Friday, December 28, 2012

Anxiety Herx is Back

My anxiety right now is through the roof. I guess my good week has ended. I have not slept more than 2 hours all night. I've been up since midnight and it's now after 4 a.m. I have things to do at 8 so I won't be going back to sleep. I tried benadryl, melatonin and high doses of valerian root, b vitamins etc. Nothing is helping my mind and body to calm down. This is not good energy, it's over the top extreme anxiety that is leading to obsessive thoughts.

Since it woke me up, I am wondering if hypoglycemia could be to blame this time. I quickly ate a piece of fruit and some nut butter. It calmed things down slightly, but considering I'm on benadryl, valerian and melatonin and still awake and hyperactive I think the anxiety came from more than just a need to raise my blood sugar.

Anxiety seems to be becoming a major herx symptom for me. I have had these episodes on nearly every single antibiotic. The most noticeable was on Doxy, Rifampin, Ceftin and Biaxin. So it appears that mainly the Lyme meds and potentially bart flaring contribute to the anxiety.  It's a full moon and I'm also entering the 3rd week of Flagyl (a notoriously bad week for herxing). I'm in the second week of mino as well which I felt no effects from until now.

I absolutely hate when I get anxiety or any type of emotional breakdowns or psychological symptoms. It makes me feel like I'm crazy and I worry that I'm going to be referred to a psychologist or something. I know that I don't have any psychological problems independent from Lyme. This is pure herxing and Lyme and co-infection effects.

I don't know what to do. I had been doing methylcobalamin (b-12) shots and I didn't have any anxiety on the days that I did them. I skipped the last few days, but I don't think that could have caused such a drastic increase in anxiety. If so, I probably shouldn't take it continuously because I'm definitely going to become dependent on it if this is what happens when I skip a day or two.

I'm debating whether or not to call my LLMD's office in the morning because this anxiety is extreme and it gets to the point that I think it's unsafe physically and psychologically for me to try to push through this type of herxing. However, because it's pretty rare for me to call about a symptom unless something is seriously wrong, the response I always get is to go off antibiotics. That's not what I want to do and I'm not having an allergic reaction or a life threatening herx so I'll give it a few more days.

I've also been having extreme chills yet feel feverish (with a low temperature) and lots of twitching and pains. I was so happy last week because I felt some improvement but I should have known.......it never lasts. It's almost more disappointing to have improvement and then revert back to this than it would be to have never had the improvement in the first place.

Saturday, December 22, 2012

I'm Having a Decent Week

I started Flagyl at 750mg spread out throughout the day a little over a week ago. That dose is a little low for my weight but I'm not in any hurry to push the limits on this particular medication. I was expecting to herx severely but I haven't really herxed at all yet and I'm over 10 days in. Usually the third week is the worst for me though so I'm not getting too excited yet.

This week I was actually getting short spurts of time that I felt better than usual. Not as tired, more clear-headed and less depressed. The same thing happened right when I started Bactrim and Biaxin. On those two, the improvement lasted a week and then I started feeling really ill again.  I have felt terrible for a while now and I started to feel a little better almost as soon as I started Flagyl. I know it's not a placebo effect because consciously I did not want Flagyl to be the one to work for me. I was hoping it wouldn't work well because I'm afraid of taking it long-term.

I haven't been eating well for a long time and yesterday I was able to eat a small steak and some rice and fruit! That's huge for me since lately I've been eating a diet almost exclusive of almond milk, soup and peanut butter and I even had to force that.

A few days ago I changed Ceftin over to minocycline and I don't feel bad on that either. No dizziness yet.........but I have only taken 2 doses of it. I also have done 2 methylcobalamin shots so far and they are going well although I didn't feel anything particularly drastic happen instantly from them. Today I went for a walk in a snow storm for 5 miles! It was 29 degrees (18 wind chill) and I wasn't even cold! I usually can't even stand outside for 5 minutes without feeling like I have hypothermia.

I'm still having a lot of twitching and muscle spasming that's making it's way into my eye and mouth. That has increased on Flagyl. I also had a new stutter which comes randomly and yesterday I had severe back pain which was very unusual. Tonight I'm starting to not feel great again. I don't know if it's my vitamin IV wearing off, skipping a B-12 shot today or the herx starting to hit from Flagyl or Mino.

However, overall, I definitely had a few days of more energy and less depression, and since it started improving immediately when I started Flagyl, I can be pretty sure that Flagyl is what brought that improvement. I just wish it would return or stick around long-term.

Lurking in the back of my mind is the thought that I'm feeling better because my liver is not doing well. Pretty much every time I've had any hint of improvement, my liver enzymes have been elevated and I've had to stop all antibiotics or drastically reduce them.  I hope that's not the case this time, but I have a feeling it is.....On my last LFT right before starting Flagyl, my liver enzymes were very close to being abnormal (within 1-2 points).  Since Flagyl has a reputation for raising enzymes, they almost certainly went up above the "normal" range since they only had to rise 2 points. I did another test after adding Flagyl but before adding Mino. Hopefully they aren't elevated.

One potential explanation I have for the lack of a herx on Flagyl is that it's effectiveness is being significantly lowered by Rifampin. I have read that Rifampin lowers the plasma concentration time of Flagyl by 33% and the clearance of Flagyl is increased by 44%.

Another possible explanation is that the dose I'm taking of Flagyl is too low. A third explanation (although I don't have much faith in this) is that Rifampin and Plaquenil already significantly lowered my cystic Lyme load.

Whatever the reason, I'm glad I got a little break from symptoms and was able to go for a few walks. I really needed this. I was so depressed that I was breaking down and crying last week about everything. I guess the break was my Christmas present this year!

Sunday, December 16, 2012

Flagyl

So I'm about to add Flagyl and also B12 shots. Flagyl is one of the medications that I have avoided the entire time I've been in Lyme treatment. As someone who was completely against the use of medications prior to Lyme, I'm scared of Flagyl. It has a black box warning as a carcinogen.

Is getting rid of Lyme worth the risk of developing cancer? It's hard to say for me. I'm getting toward the point that I'm starting to lose my ability to function like a normal person. Lyme is literally taking my life from me so I have to do something to stop the progression from occurring. I know if I wait too long, Flagyl will be more difficult to take due to all the bacteria converting to cysts. I have already waited a year with strong Lyme symptoms. I've likely had a milder or dormant state of Lyme infection for many years prior to that.

I have tried to rationalize the Flagyl addition to calm myself down. After all, we are exposed to NUMEROUS carcinogens every day. The difference is, we don't have a warning printed on our microwaves, cell phones, foods etc. Also, Lyme disease has been linked to lymphoma so having an advanced stage of Lyme infection that is not treated aggressively, can increase the chances of developing cancer as well. The studies that were done on Flagyl involved animals and much higher doses than what is normally given to humans. There was also a study done that showed no significant increase in cancer from Flagyl.

So I decided to just go ahead and start taking it. My dose is a little lower than what some doctors would prescribe based on my weight but I have no desire to ramp this up because of my fear of the medication and the herxing that is likely to come (for me herxing is always very strong in the 3rd week). So far, I have not had anything unbearable happen, but I was already in a pretty strong herx when I started Flagyl and I'm dreading the 3rd week of this.

One of the increases that I've noticed since adding Flagyl is being off balance transiently. This gets a lot worse when it's dark. I fell yesterday getting out of a car in the evening. Another increase is a different type of exhaustion than I normally have. I feel overwhelmingly weak and ill particularly in the morning or if I oversleep. I think that could be due to a buildup of toxins or adrenal insufficiency along with Flagyl.

I'm also getting spacier and can't really watch TV (especially in a dark room). I have a problem getting tranced by Christmas lights and headlights also. I just feel really "out of it." This worries me. I'm worried it's some type of seizure but it's not new to Flagyl. I've had this several times over the past year and even had two definite (unconscious) seizures last year when I was off all medications.

And finally, my symptom of twitching is increasing in my eyes, hands, legs etc. I already ruined a friend's table this week because I lost the feeling in my hands and dropped something caustic all over the wood finish. That was followed by an unproportional breakdown because I felt so badly about it. All of the things that have been happening to me for the past year caught up to me at once. Now these friends probably think I'm completely crazy. I never cry in front of people about anything. They weren't even upset about the table and were trying to make me feel like it was no big deal but I was overwhelmed and couldn't pull it together that day.

These new increases are in addition to all my "regular" symptoms of pain, numbness, no appetite, etc. This is tough, but I have to keep trying. I cannot stand the thought of living my life with this level of symptoms. I literally will have no joy in my life if I can't get this under control so that I can be a functioning "normal" person.

Sunday, December 2, 2012

Contemplating a Future Plan

So, this has been a rough week. I don't know if it's the full moon or just a monthly Lyme flare or what. I have been extremely depressed and I feel like my life is being ruined by Lyme. I'm not usually like this. I usually spend all my time figuring out a way to make things better for myself. A new treatment option, a new supplement, forcing some exercise, coming up with something I could make to sell online etc. Lately, I've just lost all my motivation. It's hard for me to see right now how or when anything could possibly get any better.

I am currently working at a "bottom of the barrel" job based on my degrees and experience. I only work VERY part-time (if that) per week right now. I can barely do this simplistic job in a very limited capacity because my hands constantly go numb, I'm completely exhausted all the time, constantly having joint and muscle pain along with twitching, and I have a hard time staying alert throughout the day.

This is not how I expected my life to be at this point in time. I just graduated with a M.Ed.. I wanted to start a career or at least obtain a decent and stable job. I wanted to get married, have kids, etc. Now my main concerns are how I'm going to make it through the day without collapsing, how I'm going to pay for medical treatment, and how I'm going to live like this long-term.

I can forget about having kids as well because I would not want to take a chance and knowingly subject a child to this degree of disease. I think unless a definitive cure is found, I would not be comfortable carrying a child based on the risk of transmission and the possibility of birth defects from all the medications I've been on long-term.

I'm a year into aggressive treatment. I still have never made substantial improvement. I am CDC positive for Lyme with a very low CD57 so I know Lyme is to blame for this (along with co-infections). I never had any health problems prior to last year when I had several tick bites followed by flu-like illness/high fevers.

I have tried so many herbal combos and antibiotics. Here's my list:

Herbs: Banderol, Samento, Andrographis, Japanese Knotweed, Cryptolepis, Artemisia, Ginseng, Ginger, OLE, GSE, Turmeric/Curcumin (and more that I can't think of).

Medications (in various combos): Mepron, Clindamycin, Amoxicillin, Biaxin, Tindamax, Bactrim DS, Rifampin, Doxy, Plaquenil, Ceftin, Probenecid, Cortef, Florinef, Azithromycin, Nystatin.

I have also done a ton of different detox supplements: Lemon water, alka seltzer gold, ALA, NAC, glutathione, milk thistle, detox teas.

In addition to these supplements: Vitamin C, CoQ10, magnesium (malate and citrate), multivitamins, probiotics, s. boulardii, calcium, methyl B-12, Vitamin D, B-complex, etc.

So what do I do now? I'm 2 months into a new combo and still no improvement. Each day is getting harder and harder to deal with. Is it time for IV's? I don't know. They will be VERY difficult for me to afford. I quoted a price with Infuserve (which is very affordable and the most likely infusion service that I would go with) for 5 day pulses of Rocephin 2g per day. The cost with all supplies will be a little over $400 per month for 20 infusions and of course I would have to take orals alongside Rocephin and worry about infection, gallbladder complications etc.

I have always been completely against IV's. My LLMD could tell you that. It was one of the first things I ever said to him. But unless I can figure out another oral combo (and one that actually works) I don't think I  have a choice.


Friday, November 30, 2012

Will I ever feel normal again?

I'm not having a good week physically or psychologically. My muscle pain returned very strongly in my calves. I could not walk up stairs yesterday without extreme pain. I'm also not able to eat a normal amount. I'm lucky if I can consume 500 calories per day and it's been like that all week. Most of the 500 calories are from liquids. My hands were frustrating me beyond belief the other day because I couldn't button an outfit.

I started thinking about long-term again which is never good.......but I couldn't help it. I never expected this to happen. I worked so hard all through high school and 6 years of college so that I could be successful in life. Then right in my last year of college, I contracted or re-activated Lyme. Since then it's mostly been a downward spiral with very limited (if any) lasting improvement.

I know several of the big name LLMD's (and my own) have said that there is a certain percentage of people (10% or so) that do not get better with treatment. For those people, they still don't know what to do to help them. I'm starting to think I'm one of them. 

Everything I've worked for is meaningless now. I can't do what I was trained to do. I can't even complete simple tasks sometimes. I'm so worn out and run-down. I have to focus on just making it through each day and instead of looking forward to days ahead, I dread them. I wish that Lyme had a cure and that it had not ruined my life and so many other people's as well.

Friday, November 23, 2012

Thanksgiving

Well I made it through another Thanksgiving and I'd like to try to list a few things that I'm thankful for this year. Overall, I'm thankful for many things: my family, friends, pets, etc.

I'm thankful that my immediate family is supportive of my Lyme diagnosis. I come from a family that NEVER takes any medications. I was expecting some of them to have an issue with the number of meds I take but all of them are fully supportive of my protocol and the diet I have to follow. My sister made a gluten free apple pie (without any added sugar) and my mother made stuffing with gluten free bread and separate potatoes that I could add almond milk to this year.

I'm thankful that I was able to eat a small amount of food over the past few days. I hadn't been eating well for a while. I was able to eat some turkey, gluten-free bread and pie. I did get sick afterwards and fell asleep very ill for a few hours but at least I ate something.

I'm thankful that I was able to help people that were trying to get some sale items on Black Friday. I actually made it a full day of shopping. I did have to use excessive B-vitamins, green and ginseng tea, CoQ10 and magnesium but at least I did it. I'm lucky that I had a good IV this week that lasted me. 

Last year on Thanksgiving I was still trying to figure out what was wrong. I knew I had Lyme but I couldn't get a doctor to test or treat me for Lyme. So even though I'm not doing too well physically lately, I am very thankful that I have several doctors that are willing to put in the time to attempt to help. I'm thankful that my liver is finally cooperating so that I'm able to stay on a fairly strong combination. I'm also thankful that I am not in such a desperate, depressed psychological state of herxing like I was a few weeks ago.


Monday, November 19, 2012

Aftermath of the Herx

This picture says it all. The cloud is lifting, but I'm still in a cloud.

That was a tough few weeks of herxing. It was the worst herx I've ever had. For a while I could not even type or use my hands and arms to be able to hold a fork or eat.

I didn't get a call from the office after getting my blood work done, so I am assuming at least my liver and kidneys held up through that massive herx. I'm starting to feel a few things calming down. At least I'm no longer depressed to the point that I feel like giving up on life like I was a few weeks ago.

I had a really good few hours after a vitamin IV recently. I went running a short distance. It was the first time in many months. I had to stop pretty quickly and walk because I'm still tasting blood in my mouth and it triggers a lot of lung and heart pain. At least I felt up to attempting it though. I haven't even been able to go on decent walks in a long time. The IV worked really well this time. I'm so glad because I really needed a break.

The rest of the week didn't go as well though once the IV wore off. I'm still incredibly run-down. I can't tell if it's due to the herx's aftermath, the weather, or just my normal weekly cycle of symptoms. Whatever it is, it's not fun. I needed to go and get some ingredients to make a dessert for Thanksgiving this weekend and I wasn't able to leave the house. I was extremely exhausted and for no good reason.

I'm at a point now that I don't know what to do. How long is too long to wait for some improvement on a combination? Do you wait it out long-term even though you aren't feeling significant positive changes or do you change things frequently until you do get a magic combo that moves you in the right direction?

I've tried a lot of combos but I haven't found any magic one yet. I was stagnant for most of the summer and I had significant improvement in my 2nd week of adding bactrim and biaxin. What now though? I'm slightly worse than normal. How long do I let it stay like that before trying to make a change?

Sunday, November 4, 2012

Flu-like Herx is Back

First of all, isn't this the coolest bed? It really has nothing to do with this post, but I would love to have a bed like this so I could lie around happily.

I've been posting nearly daily this week. It's been such a difficult week for me. The lack of a nutrient IV is part of it. That was not smart of me to skip it in my 3rd week of new meds. I should have known. Like clockwork, I always have a moderate to severe herx in the first week of a change or increase in dose and a SEVERE herx in the third week.

Last night I had to work for a few hours.  I felt TERRIBLE. I was freezing cold like hypothermia with extreme body-wide aching. I had to wear leggings under my jeans, 3 shirts, a winter fleece and a winter coat and I was still shaking uncontrollably in a room that was heated to 70 degrees.

This morning has not been an improvement. Now I have dry eyes and a swollen throat as well. I probably have a fever, but I can't get out of bed to find a thermometer. This is one of the strongest flu-like herxes that I've ever had. My other strong one came from Mepron, and then another when I started Plaquenil.

Sadly, the turmeric doesn't appear to be helping the pain, but I'll keep taking it. Maybe it's cumulative. I'm also thinking of taking some olive leaf extract today in case this really is a virus of some sort. However, I don't think it is. This is my typical herxing pattern. I don't know which one of my meds is causing this, but at least I know that since I'm on a strong combo, it's probably not progression. 

Between the extreme muscle pain, exhaustion, flu-like stuff and the lack of coordination of my hands, this has been a fun week! I wish I could just sleep for the rest of the week to recover from this. Unfortunately I only have today to try to improve enough to be functional.

On top of this, I just pulled about 6 ticks off my dog today. Several of which I accidentally exploded between my fingers (after removing them) due to my hand inaccuracy. Hopefully I'm not adding to the infection through my skin somehow.  People have often joked to me that with all the tick bites I've had since February last year, I'm infecting all the ticks!

Saturday, November 3, 2012

Getting so weak

It's been about 3 weeks since starting my new additions to the combo (bactrim and biaxin). It's been a week since I doubled Ceftin. I've been on Rifampin and Plaquenil for many months. I feel absolutely terrible today. I literally have no strength in any of my muscles. It is taking me hours to write this because my hands are trembling and numb. So please excuse any typos because going back to correct them is an ordeal today.

I'm on a strong combo now. This is what I wanted. I asked for this. My liver is cooperating so far so I don't want to back down. I knew the 3rd week would be bad. I just hope that this time it doesn't stay bad like it usually does from week 3 on.

So my main symptoms right now are extreme fatigue and weakness. I literally could not hold onto a fork due to extreme weakness and mild trembling in the muscles of my arm. I have no appetite, but have lost a little more weight so I've been trying to make sure I eat enough. That's hard to do when you're exhausted just from lifting a fork.

I also have extreme burning muscle pain in all of my muscles. Last night I couldn't even touch my legs because they hurt so badly. I tried some turmeric as was suggested to me by a doctor. I don't notice any improvement yet, but I know it's probably a cumulative effect and won't work quickly.

The muscle spasms are also pretty bad and at night I am sometimes getting a feeling of suffocation which many call "air hunger." It's usually a babesia symptom. I have not had much of this up until the last few weeks.

 Last night I had tremendous pain under my right rib cage. I literally could not shift the way I was sleeping without extreme pain. Had I not just done a liver test, I would have thought something was seriously wrong in that regard. It's gone today for now.

This is rough. I hope it gets better. I thought not being able to go running was a huge loss. Now I can't even attempt to walk my dog a short distance. In addition, I lost most of my income. For some reason I'm still not extremely upset by any of this. If anything, I'm probably happier than I've been in a while although I have no idea why. To be happy at a time like this doesn't even make logical sense. Maybe one of the meds is affecting my attitude or maybe I'm just in shock :).

Wednesday, October 31, 2012

Halloween!

This Halloween will be my 2nd one with active symptoms of chronic Lyme.

I used to love Halloween. I love scary stuff. Every year I try to at least go to 1 scary event. Usually I go to a haunted corn maze. You go in at night and you only have a flashlight. It's loaded with people trying to scare you and buildings to crawl through complete with strobe lights and chainsaws. Unfortunately, it's not the safest event and each year there are many people falling off the staircases and getting injured or slipping on the mud of the corn maze path.

One year I went with a family member down to Universal Studios for Horror Nights. That's a huge event with MANY haunted houses. We were expecting to be terrified as it has the reputation for being the scariest Halloween event in the country. Unfortunately, we were kind of disappointed. We didn't feel like the houses were significantly scarier than ones we have access to locally and the cost was astronomical in comparison.

One of the best Halloween events we've been to was put on by the volunteer firefighters of a very small rural town. It's a hayride around a lake at night. The fireman run out of the woods and lake and jump onto the hayride in costumes grabbing people through the slats. It's surprisingly scary.

Another event by a firefighter troup takes place at an abandoned summer camp in the cabins. Unlike at Universal, these small haunted events are less restrictive about the "no touching" policy which tends to make things a lot scarier. At least in Universal, you know the actors can't touch you. Not so for these local things.

Somehow, our group of people always seem to be the ones in charge of leading the group through the houses. Almost every year, we accidentally lead people the wrong way and end up behind the scenes. It's usually hilarious because the actors start screaming "go back, get out of here!" We can never tell if we should listen to them or if it's part of the act.

This year I stayed away from all the haunted stuff even though I really wanted to go. I have been having some strange episodes which are provoked by stress and sometimes by certain lights. I'm not positive whether or not they are seizures, but since haunted attractions tend to provoke some level of stress and also frequently have strobe lights, I thought it was best to avoid them this year.  I don't want to end up causing a scene at something that should be fun or ending up in an ambulance or hospital having to explain everything.

I'm not having the best week physically, so tonight I'm probably just going to lie down, watch TV and sleep in preparation for a busy next few days. 

This is the first year of my entire life that I am not having any Halloween candy. I am on a strict diet of no gluten, refined sugar or dairy and I stick to it 100%. Thanksgiving will mark the 1 year mark of staying on that diet.

My favorite Halloween candies sure are tempting though. Can you believe they are selling Cadbury scream eggs now? I love those and now you don't have to wait until Easter for them. I don't mind abstaining from candy though. I can still have some coconut milk ice cream and popcorn tonight.


Sunday, October 14, 2012

Trust Issues and Lyme

I met with my LLMD again to follow up  on some recent changes to my protocol. This time I decided that I would directly bring up my concern of being dropped as a patient. I based this concern on some things he has said to me several times. Apparently I was misunderstanding the situation because he said that he was not intending on doing that. That information takes a huge load of stress off me. I have been worried for months about potentially and unexpectedly being on my own with this.

I have been trying to hide the severity of a lot of my symptoms because I was afraid that if I started to get too sick, I would be sent somewhere else. My options are severely limited financially.  I'm starting to not be able to hide things anymore so I'm glad that I brought up my concerns and they were addressed. My LLMD probably thinks I'm very mistrustful of him specifically, but he should see what I'm like with other doctors for comparison!

I made some changes and I agreed to do a test at the hospital which I was previously VERY against. I decided that after the length of time I have been going to this LLMD, I am going to have to try to trust his judgement regarding certain things. I hate it when things get out of control and I have to depend on someone else to decide what the next step should be.

The problem with this test is that I have pretty severe germ OCD that my LLMD is not fully aware of. I have mentioned it casually but he has no idea how severe it once was or how difficult it is for me to even set foot in a hospital. I also have severe trust issues with hospitals after a very traumatic event that involved a close family member. I didn't tell him either of these things because frankly, there is nothing he or anyone else could possibly say or do to change these feelings in a short amount of time. I just need to rationalize and talk myself down. I don't need to add psychological disorders onto a permanent medical file.

 I will probably be able to hold things together while in the hospital, but as soon as I'm out, I'm very likely to completely break down. I had been getting a LOT better with OCD, but I'm worried that this test could put me over the edge and create a strong OCD relapse.

I'm also not looking forward to dealing with other doctors knowing what the consensus of opinions is regarding chronic Lyme. I'm not intending on discussing anything with them. They will not change my mind over to the IDSA point of view so I don't expect that I can change them over either. It's not worth the aggravation right now.

I'm going to act like I don't know anything about the test or why it's being ordered.  The ignorance act shouldn't be difficult to get away with since in my experience, most doctors tend to treat me like I don't know anything and shouldn't dare to question their judgement. It's hard to tell if that's because of my age, my gender, or the fact that I have chronic Lyme. I can't change the first two, but I don't need to add to the condescension by mentioning Lyme and arguing with them. I'm likely not going to get anywhere, and while they won't give my opinions a second thought, the things they say will stick with me and bother me for a long time.

After all, what do patients know about their own symptoms and their own bodies? I have a graduate degree in research, but I'm incapable of possibly being able to research or comprehend anything medically related according to some of these doctors. I hope they just do the test like they are being paid to do. I'm not asking for their opinions.


Sunday, October 7, 2012

Lung Pain

This past month has been kind of rough for me. I started to have so much lung pain at night now. It used to be just when I tried to go running and now it's almost every time I lie down. I'm so restless every night because I have to contort my body in order to not lie on my back. Breathing aggravates the symptom.

I haven't been able to go running for at least 6 weeks. That is starting to get to me. Last week after my IV, I wasn't even able to go for a decent walk because I developed a bad headache that lasted several days. Headaches are very unusual for me while on antibiotics.

Overall I haven't felt like doing anything. I'm dreading activity and dreading things that I normally look forward to. Everything wears me out so easily lately and sleep doesn't help things. I get worse after I sleep. 

I go to my LLMD soon. I hope he's not in a discouraged mood this time. I actually have a lot of confidence in him even though sometimes he tells me that my case is too complicated or I may need to seek "outside" help. I hope he doesn't say that again. Those kind of statements create so much stress for me. I'm always afraid he's going to drop me as a patient and then I'll be in serious trouble because I cannot afford the other LLMD's in the area and I'm getting quite ill. I don't know what would happen if I was forced off treatment right now.............

To be frank, I know that Lyme treatment is basically an experiment. Whether I get biaxin, tindamax and doxy from him or from a well-known LLMD for $1000 per appointment, the meds are either going to work or they aren't. My lack of response to treatment is NOT due to my LLMD. It's due to not finding the correct combination and a number of other factors that many with Lyme deal with.

I have a combination in mind that I would like this month, but I'm not going to say anything until I hear what my LLMD wants to do. I feel like Plaquenil has stirred up babesia symptoms for me again. The headaches, abnormal hunger alternating with no appetite, severe chills, hot flashes, lung pain etc. Those are my obvious babesia signs. The problem is that I can't tolerate Mepron for extended amounts of time. I'll start, and a few weeks later my liver enzymes will go up despite all kinds of AGGRESSIVE liver detoxing. Then I'm not allowed to continue it.

I am a believer in Dr. B's and Dr. S's suggestion of 4 months or more for babesia treatment so that the life cycle of all the red blood cells have a chance to run their course. I don't want to restart Mepron if I can't take it for the full length of time that is required to at least have a chance of eradicating it.

My solution is a weaker babesia combo that I may be able to deal with for the 120 day life cycle. I'm thinking: Malarone, Bactrim, Zith and Ceftin or Doxy with a pulse of Flagyl. I could also stay on Plaquenil for a while and then pulse Flagyl later. I think that will be a good Lyme and Babesia combo. I can go back to Bartonella later. I've already been on Rifampin for 4 months.

I am hoping my LLMD has something similar in mind. It will be interesting to see if our ideas line up this time. Usually we're on the same page, but sometimes I think that he reads me wrong and thinks I'm subtly asking for a break when what I'm really getting at is that I want a stronger combination. He's very cautious with me lately in terms of dosages and constant blood work and I can't figure out why. I think he feels that I'm starting to push things too far in trying to deal with certain symptoms and herxes when he would prefer to back down during those times. Overall, I do trust him more than the other doctors I have seen. I have a very difficult time trusting doctors and I know that I would struggle with that if I had to see the other area LLMD. The other LLMD does not appreciate patient input so our personalities are not going to match up well.

Friday, September 28, 2012

Financial Worries

As I get closer to entering my repayment period on my student loans, I am starting to get extremely worried. I have a substantial student loan debt. It's over $50,000. I did not expect that I would not be able to find a job after graduation. I also didn't expect that I would be so weak with progressing neurological symptoms in my 20's.

What do I do? How do I get a job when half the time I can't move my left hand, am dizzy all the time and am so weak I cannot stand? How do I pay back this debt? Loan lenders don't care about your problems.

My car is also on it's way out. It's over 100,000 miles. That will mean I can't travel to doctor's appointments. I have no other way to get there. There is no public transportation in my rural area.

Doctors appointments..............that's another thing that will prevent me from taking a normal 9-5 job even if I am offered one. I don't think too many employers will be okay with letting a new hire out early once a week for appointments. Not that I'm even being offered any positions. I have 3 college degrees and cannot even get a minimum wage job in retail or food services.

Things are just not good right now. I have not slept in days because of a chest pressure that keeps me awake and makes it uncomfortable to sleep on my back. I'm so exhausted during the day that I can't function. In the early morning I'm up worrying, searching for jobs, and trying to figure out what I can do to get myself out of this mess.

The other day, I was at someone's house visiting. A little girl asked me if I could braid her hair. This is something I've done thousands of times. As I went to start the braid, I realized I suddenly had no idea how! I couldn't remember how and could not do it. Shortly after as we were watching a movie, I realized that everything sounded distorted. I felt extremely strange and I couldn't understand anything I was hearing. This stuff is getting scary! I don't know what to do anymore.

I am sometimes so sad. I feel like Lyme has taken away my whole life. I feel like I'll never be able to afford the treatment to get better and I'll just keep declining. I am so upset with my life right now. I literally have lost everything this past year. I have no career, no spouse, no finances, no level of health, and right now it just seems like no positive future. The only thing I have is piles of mounting debt that I cannot repay and symptoms that seem to worsen day by day.

Sunday, September 23, 2012

Random Rambling

So after a horrible week full of anxiety, I have now become completely exhausted and weak once again. I can barely walk any distances whatsoever. I am barely making it through the day and several times this week I have fallen asleep in the middle of the day for 3-4 hours.

I am having pretty extreme numbness and tingling in my limbs and a very heavy heart/lung pressure at night. I still feel like my current combo is not strong enough. In a few weeks when I meet with my LLMD, I want to make a much stronger combo. I want to make sure that any symptoms I'm having are definitely from herxing and not progression.

Tomorrow I get another blood test done. It's the first blood test I've had since starting a new medication. Since I've had a lot of liver issues (both on and off meds) the first test of a new med always makes me kind of nervous. Usually when I'm feeling really badly, my liver is normal. When I feel slightly better it's elevated. Judging by how I've been feeling, it's normal this week but we'll see.

I've had a sad day today. I was thinking about how last week I was forcing my way on difficult hikes every single day to try to burn off some of the unrelenting anxiety that was literally driving me crazy. This week, even after a vitamin IV that usually makes me feel great, I was barely able to walk one time. I struggled with dizziness and heart and lung pain. I had to lie down at the halfway point of the trail on a cliff of rocks. If anyone had seen me doing that they would have either thought I was crazy or thought I needed immediate medical help. I just can't believe that not only am I losing the ability to go running, but I'm also struggling severely to even walk any distance.

I was also watching some of the music videos I've done over the years. I am completely unable to perform any longer. I had worked nearly my entire life to get to the level I was musically and now due to the unpredictable paralysis/neuropathy of my hands, I am probably able to play at about 10-20% of what I used to. Will that be reversible or will it progress until I can't even play at all? What do I do with my life now that I've completed college degrees in a field where the use of my hands is absolutely necessary? What job doesn't require accuracy in hand movement?

Sometimes I think to myself, why does this happen to people? I know that things could always be worse, and there are much worse situations that a lot of people are living with every day, but why? Why do so many people have to struggle with terrible hardships and what lessons are they learning that couldn't be learned in a less psychologically and physically damaging way? Why do some people have things so easily and others must struggle every day?

I have friends that literally have no worries. They make six figure salaries, have beautiful families, million dollar homes, and are in perfect health. These people often say to me........"Why don't you just go on IV's if that is the strongest and most likely to get you better?" They have no concept of the fact that I am struggling just to purchase food each week and could no way afford to pay $700 per month for IV antibiotics on top of my already insurmountable bills and college debt. To them, that's unheard of. They have never had to worry about money. What I'd give to be in that position!

Well I guess I'm going to have to accept the fact soon that there are a lot of things about having a chronic illness that I can't control. I have a VERY hard time dealing with that. I have been so obsessive with my food intake for nearly a year because that's one of the only things I CAN control. Everything else feels out of control in my life right now.

I have no control of when my medications are stopped. I can't control my liver enzymes no matter how much detoxing I do. I can't control my symptoms which continue to get worse. I can't control the opinions and thoughts of so many others who constantly tell me that Lyme is not serious and that I'm exaggerating. I can't control that no matter how many positions I apply to, I am apparently not qualified to work in my field even with three very specific college degrees.

So what can I control? I can control my mind and continue to research in the hopes that I will find something that will work to make me feel better. I can also control my personal choice to not start any medications that have the potential to become addictive.

A few months ago I met with someone who also had Lyme along with other serious non tick-related infectious diseases. I had never met this person before. The connection came from the leader of my state's lyme organization. Within minutes of meeting with this person, it became clear to me that he had a drug problem. He was taking oxycodone along with several other street drugs.  In addition, he was on tons of anti-depressants along with valium and xanex. He even tried to offer various medications to me! I was absolutely shocked.

This troubled me severely. I thought to myself, what if I end up like that? While I felt badly for this person, I felt like this type of behavior is what makes some doctors treat Lyme patients badly. I know for a fact that one of my acquaintances who is a doctor (he doesn't know I have Lyme) thinks that most "chronic" Lyme patients are seeking pain meds and disability.

I completely disagree with that doctor's view of chronic Lyme patients. I don't believe that all of them are seeking pain meds. I for one, am extremely resistant to all medications. I also feel that most of the true Lyme patients that are seeking disability, likely need it.

I can't however, relate with people that are self medicating with controlled and illegal substances. It is completely against my values. I will not be meeting with this person again. I cannot take the stress of trying to remain polite to someone who is doing something that I am so strongly against and trying to convince me that it's helpful and I should "try it." I feel like the type of behavior he was exhibiting is what gives Lyme patients a bad rap with doctors and that angers me.


Friday, September 14, 2012

Extreme Anxiety Returns...........

The past few days have been very bad days for me. I am having extreme anxiety. For several days I have not been able to calm myself down. I have barely slept or eaten. I haven't been able to run lately because of heart and lung pain, so instead I am now hiking and pushing things too far trying to force short spurts of sprinting. Two days ago I did 5 miles and then another 3. Yesterday I did 5 miles, then another 5 on extremely mountainous terrain, and then another 1 mile. This morning I'm up at 3:00 a.m. waiting for the sun to rise so I can go up another mountain before my scheduled plans for the day begin.

This is not good. I went from too weak to do anything to over the top energy in a very short amount of time. It's not healthy energy. It is definitely going to be detrimental for me to continue this amount of exercise, particularly since I am not eating a normal amount of calories. Logically, I know I shouldn't run or go up mountains, but I can't help it. My mind is racing and I'm out of control. I can already feel some of the negative effects this is having on me as the numbness in my left hand yesterday was much worse than usual.

I believe the anxiety is from pesticide/insecticide exposure again. It always happens shortly after I breath in air from a recently sprayed lawn, or am near someone who is coating themselves in DEET. This week, several houses nearby were spraying their lawns. I was unable to avoid breathing in the fumes because I had to wait outside for children to get off the bus.

I did start Ceftin a few days ago, but I don't think that is causing the anxiety. However, with this episode also came a strong concern that I have weakened my combo by pressuring my LLMD to switch me from high dose doxy to Ceftin. When I wanted to switch, I did not expect him to switch me to a very LOW dose of Ceftin. If I had known, I probably would not have changed it and would have instead discussed adding biaxin to the combination or substituting Tindamax or Flagyl for Plaquenil.

I called the office to express my worries about having switched the meds. It was the first time I have ever called for that reason. They told me I can switch back to doxy if I want. I don't know what to do. I know I'm not myself right now because for the first time ever I want someone else to decide for me. I absolutely hate this feeling of being completely out of control. I like the fact that my LLMD includes me in making decisions, but this time, I'm not in a place to decide. It's putting more stress on me that if I make the wrong choice, I could potentially allow this to progress again and cause more damage.

I am worried about this low dose because now if I get new symptoms or get worse, I will know it's likely not due to a Ceftin herx because the dose is far too low to do any good.

Monday, September 3, 2012

New Symptom This Morning

Today I woke up with another new symptom. I kind of expected that something was changing since I've been having a few unusual symptoms the past few weeks. I hope that nothing really severe starts up this week. 

Sometimes when I write this blog and look back on certain things, I think..........I should have seen that coming. I almost feel like writing things down makes me worry less.

For the last several weeks I've been having a lot of heart problems. I've always had minor heart palpitations, but these are stronger. I've been getting chest and lung pain along with a very rapid and irregular heart rate which completely prevents me from running. 

Several times I tasted blood in my mouth while running. That scared me quite a bit so I've backed way down from exercising. The chest pain and shoulder pain worries me. I've refrained from all running this week. Even so, I've been getting a racing heart up into my throat randomly without activity.

Then came anxiety this week. I haven't had that for a while. It was completely preventing me from sleeping. I felt like I needed to go running, but I obviously could not. 

In the past, the anxiety always seemed to coincide with exposure to DEET (I don't spray it on myself but many of the people I'm around on a daily basis do). This time I'm not sure if that was the cause. 

Then this morning, I woke up to a pretty unusual symptom. After two nights of very restless sleep, all of a sudden last night I was able to sleep without the aid of benadryl or valerian. I fell asleep early and was completely out. I did not wake up for nearly 12 hours. 

When I woke up my entire body felt like it was vibrating and trembling although it was not visibly moving. It kind of felt like if you are holding a weed-eater or something. The only other time I have had that sensation was when I broke a bone. It feels like a vibrating numbness. Sort of like what happens right before you lose all the feeling in a limb. Except this was not only my hands, but my arms, legs and head.

I don't know what's going on this week, but I still don't want to back down off meds. I went from really bad exhaustion and a high fever/flu last week to a week with lots of new stuff going on. I hope my LLMD is thinking the same thing when I meet with him next time. If anything, I would like to hit this with something stronger, not back down or "take a break."

Thursday, August 23, 2012

Didn't think things would get worse.........

Just when I though I was hitting the peak of the herx from Plaquenil, I got worse yet again. The other day after experiencing heart issues and tasting blood in my mouth, I woke up to a 103 degree fever and severe muscle and body aches along with painful swollen lymph nodes and some soreness and swelling in my throat. I haven't been around anyone who is sick, and this started exactly on my 3rd week of Plaquenil.

Yesterday I went to a beautiful place nearby. It's full of marble rocks and a trickling stream/waterfall that pools for perfect swimming conditions in crystal clear water. My intention was to watch from the sidelines as it was only in the 70's and I didn't feel well. As I inched down the rocks to find a good place to sit, I slipped and slid all the way into the icy water. What's worse is I didn't have the strength to pull myself back up the slanted smooth rocks (picture a long flat waterslide) so I had to swim across the pooled water and climb out on the other side.

I quickly realized that I was not very cold despite the freezing temperatures of the water. That's VERY unlike me, especially under those circumstances. I wish I had a thermometer on me at the time because my suspicion is that my fever may have been even higher than 103 at that time.

The only other time I've herxed like this with a fever and severe flu-like symptoms was while taking Mepron. It's hard for me to tell now if it's the Plaquenil hitting babesia, the cyst form of Lyme or increasing the effectiveness of my bartonella combo. Either way, it's not fun. I was struggling without the fever to function and now it's 10X harder. I'm going to stay on though. I'm stubborn and I don't like to quit easily. My LLMD doesn't know about the fever, but even before this happened he said to go ahead and stop and not try to push things. However, I am still hoping that something will improve if I can just stay on long enough. 

Today I don't feel any better even after taking advil. I hope that I don't continue to get any worse because I'm reaching the point where it's going to be very difficult for me to function in a normal capacity. Plus today is a day where I have had very bad luck in past years. So even though I'm not an extremely superstitious person, in the back of my mind I'm thinking what's going to happen this year on this day? Hopefully nothing and the fever will be eventful enough.

Sunday, August 12, 2012

Plaquenil Herx

Many months ago, as I sat across the desk from my LLMD at our first appointment, I remember stating that there were several medications that I did not want to take. As he asked me which ones I was worried about, I promptly stated: Levaquin, Cipro, Flagyl, Tindamax and Plaquenil. At the time I felt that the potential side effects of these medications such as permanent nerve, vision and tendon damage along with the carcinogenic properties of Flagyl/Tindamax outweighed any possible benefits that I could get from them.

Over time I started to get worse than I was at that first appointment. Especially regarding weakness, twitching and numbness in my extremities. Once a highly active person, I am currently severely struggling to make it past the afternoon. If I do sit down or take a nap, I find it VERY difficult to recover. I become so weak that I cannot finish out the day. I decided that it's time to try whatever it takes to get well. I want to try the strongest meds that I can before I get too weak and become bed-bound or non-functional.

Plaquenil was not considered one of the "strongest meds" in my mind. I saw it as a weak cyst-buster and a possible weak treatment for babesia. I know it also raises the effectiveness of zith and biaxin (neither of which I'm on). I was not expecting much of a reaction if any to Plaquenil. I was actually more worried that it would just be covering up and masking pain since it is used for other supposedly non-infectious conditions such as Rheumatoid Arthritis.

A few days ago I added Plaquenil to Doxy and Rifampin. I was EXTREMELY worried about this one because of the risk of eye damage (even though I know it's very rare). Within about a day of taking it I started noticing some strange effects. I'm having pain in joints that don't normally hurt, increased numbness and a drugged feeling. Sometimes the pain in my ankle and knee is so bad that I can't even put weight on it.

I have been very dizzy since starting Plaqunil. I have some pressure/heaviness in my chest and throat. I've also had some heart racing increase without activity which is odd because I don't believe Plaquenil has this risk. I've taken others that are known to cause this (Zith and Biaxin) with less heart issues than I'm having now.

In addition, I feel very exhausted again and overwhelmed by lights and sounds that typically don't bother me. My emotions are going crazy and I am developing frequent headaches (something that is very unusual while I'm on meds).

Again it's hard for me to pinpoint what is causing this reaction. I had been starting to get weaker before beginning Plaquenil. I also decided to stop the cortef/florinef this week because my liver enzymes are heading up again and I wanted to stop all non-essential meds and supplements before my LLMD stops everything. So is it really the Plaquenil? Is it cortef/florinef withdrawal? Or is it elevated liver enzymes causing me to feel like crap again?


Friday, August 10, 2012

LLMD Appointment Update

Thank goodness! My LLMD appointment went well. I was SO worried about my appointment this week because at my last appointment, my LLMD was very discouraged and I thought he might  send me to someone else (which I did not want at all).

On the way to my appointment, I got so nervous that I was throwing up in the car. I initially thought it was nerves from the anxiety I had. Then I started getting nauseous again later on in the day and I remembered that I was also throwing up on a walk a few days ago. I also had a really bad headache yesterday which is very unusual for me while I'm on medications. My back was killing me all along the joints. That's another symptom that I've never had before.

Sure enough, as soon as I started to eat again last week, my liver enzymes started to go up. I don't know if it's eating, bromelain or the one normal test I had a few weeks ago was a lab error. Somehow I need to figure out something before my enzymes get too high again. 

I'm going to be starting Plaquenil. I'm pretty nervous about that one. I do not like the risk of retinal damage associated with it. I've heard it's a very rare risk, but I still don't think the track record of plaquenil makes it a good choice. I have not heard of a ton of people who have had drastic improvement just by adding plaquenil. To me it seems like a supportive drug to increase the effectiveness of zith or biaxin (neither of which I'm on) or a weak cyst buster. I think I would have rather taken Flagyl or Tindamax (even though I used to be totally against those for the cancer risk). I figure why try the weakest thing? I would rather try the strongest thing now while I'm still somewhat functional. I'm getting weaker and I don't want to wait until I'm too physically exhausted to handle those meds.

My LLMD did not agree. He wants me to try this first before something stronger. He also wants me to start weaning off of Cortef/Florinef already even though he said I'm still having adrenal problems.  He doesn't want me using those long-term and then my adrenals completely become irreparable. Going off Cortef/Florinef will be hard for me because it was helping me get through the day, but I will try to do it. I am just happy that I had a positive appointment. I will pretty much try anything at this point.



Sunday, August 5, 2012

Worried about my Upcoming LLMD Appointment

I will be having a LLMD appointment next week and I am pretty worried about it. I started a new protocol about two months ago of Doxy/Rifampin. It wasn't working the last time I went in and he was getting pretty discouraged which has me very worried.

It's been another 3 weeks since then. The first week I had a little more energy than normal which was probably from the cortef/florinef kicking in. The next week I had a few pretty good (better than normal) days after my glutathione IV followed by VERY bad days and then this week I had virtually no good days and several very severe days despite an IV.  I am extremely weak again with lots of pain, twitching and numbness.

I am worried. Last time my LLMD mentioned that we might need to get help from someone else. I have researched all the LLMD's in the area as well as their protocols. I like my current LLMD and I do not want to go somewhere else.  I can't afford the others and I know from their patients that they try the same protocols that I have been trying (except for longer lengths of time before switching).

For the past several weeks I have been frantically trying to force improvement  by exercising despite feeling really bad, taking supplements and aggressively detoxing. I was hoping that I would have something positive to report and my LLMD would not get frustrated and send me to someone else. It hasn't worked. I may have even made things worse.

Now I'm trying to figure out what type of combo I can suggest. Last time he told me what he thinks he might want to add and he mentioned that it's kind of a last option. The problem is, the med he wants to add is not particularly strong. I don't think it's a good option for my last choice. I don't want that amount of pressure put on this particular med.

 I think I may need to start thinking about IV's a little more seriously. I was completely against IV's for financial reasons as well as infection risk when it was mentioned a few months ago,  but I'm going on a year since I got drastically ill and I can't say I have had any improvement in that time.

Saturday, July 28, 2012

Flip Flopping

I don't know what's going on the last few weeks.

I've been getting a few GREAT days after my IV and then when it wears off I get really bad days. A few weeks ago I was just weak all the time and slightly better after an IV so I guess this is an improvement? Now I can make it to the end of the day with the help of my 2nd dose of cortef and for some reason, added salt.

The other day I was able to go for my usual weekly jog. On the way, I saw a beautiful (very young) deer. It bounded off into the woods only to reemerge in front of me a few minutes later on the trail. This deer actually followed me for about 2 miles in the woods. It ran along side the trail and would periodically dart out in front of me and face me twitching his ears. It was so close several times that I could have touched it. The deer had absolutely no fear of humans.

A different day, I went swimming with some kids that I have known for many years. One of them wanted to do training for swim team so we swam back and forth in their pool for over 100 laps. I generally don't care for swimming much, but that day I wasn't able to go running so I was happy that I would still be able to do something active.

Nothing makes me feel as good as jogging. Sometimes I have tried to keep the jogging up after my glutathione IV wears off thinking it would help increase my energy. That works occasionally, but usually by the time my IV wears off, I have an extremely difficult time jogging or even making it for a walk and going to work.

When the IV wears off, I get a very low time starting at about noon. I usually hurry and take my second cortef, but if that doesn't kick in fast enough I find that drinking something salty usually helps. The first few days I tried the salt (either salt water or V8) and it helped a LOT. It completely turned my energy around. The last few days the result hasn't lasted as long. The salt will give me a 45 minute period of being able to function and then I crash again.

I think I might be slightly improving but I'm not sure. I want to give it more time. I hope my LLMd doesn't expect miraculous things because I don't have that yet. However, I don't want to go off this combo yet. I'd rather add to it and I DON'T want to go somewhere else either. I have confidence in my LLMD even though he seems worried lately.

The numbness and twitching have been bad lately. I'm freezing cold most of the time to the point that it wakes me up at 3:00 a.m. almost every day. My neck hurts and my joints are very painful as well. I get very strange and sudden weakness with a lot of dizziness. My appetite is also becoming extreme again which makes me think babesia may be returning.

So a few things have improved:  One is the positive effects of my glutathione IV. I'm back to getting really good days from it. I'm also able to make it through the day until evening most days without falling asleep and I am sleeping better at night. My appetite is also improving (although it is becoming extreme again. Things are so scattered that even though I keep meticulous track of my symptoms I'm having a hard time lately.

Now I have to start thinking about what I want to add to my protocol. I'm hoping my liver is holding up fine. I assume it is.


Tuesday, July 24, 2012

Knee Pain

Tonight I'm having pretty severe knee pain. I have not been able to fall asleep for more than an hour at a time. I've been up about 5-6 times and it's not even 3:00 a.m. The pain is getting worse the farther I get away from my jogs/walks. It feels like my knee is going to explode. I cannot WAIT to get my glutathione this week. I need it so badly for pain.

The only thing I take during the week for pain is advil when it's really bad, but it doesn't really do anything so usually I just try to wait things out. I am afraid to take any type of prescription pain meds. I have tried a few natural ones like flax seed and bromelain, but they don't seem to help either.

I'm not sure what I'll do. I'm so exhausted and I already tried my new trick of loading magnesium to encourage sleep for the night. I may need to resort to benadryl soon and just sleep late today. It will at least knock me out so I can get some sleep despite the pain.

Sunday, July 22, 2012

I hope this isn't Bell's palsy starting.........

For the last few days I have been getting a weird sensation on the left side of my face. It feels like how my hands and legs get right before they lose feeling and become completely numb. It's like a tingling sensation similar to when novocaine spreads to your cheek at the dentist. Luckily, so far, it only lasts about a minute each time. The episodes have been happening about 10-15 times per day.

I hope that I don't lose the feeling in my face soon and develop Bell's palsy. This all started happening when I increased doxy from 200mg to 400mg. I have been on Rifampin for a month and Nystatin for a LONG time. Florinef and Cortef for about 2 weeks.

 I had an okay day the other day despite my blood pressure being "out of range" on the store machine. Hopefully that's nothing to worry about. I tried adjusting when I took the Cortef. Instead of waiting until I became overwhelmingly tired, I took it slightly before. It seemed to work. I tried the same strategy today............no luck.

Over the last few days I have tried to increase my energy by continuing to force walks and short amounts of jogging after my glutathione wore off for the week. Usually I feel better after going jogging and have MORE energy so I was hoping I could force some improvement if I tried to keep it up despite being off the positive effects of my IV.

 It worked............. for a few days. I felt like it was helping the cortef/florinef combo. Then I felt TERRIBLE out of the blue today. I have a headache and neck ache which are very rare for me while on meds. I also have extreme pain, dizziness and exhaustion again. It kind of feels like a severe flu without the fever. I'm so out of it. It's rare for me to feel this bad. It's also quite scary how suddenly and severely it came on.

Just when I think I may be on to something I'm not. Oh well. I need to figure out something and I'm going to keep trying. Hopefully my LLMD will be in a better mood next time and he'll have another idea to try other than sending me somewhere else.

Wednesday, July 18, 2012

Trying things on my own

So I haven't had a lot of improvement on my combo of Rifampin/doxy and the addition of adrenal support. My doctor is getting worried and is starting to suggest that I may need to go to someone else. Because of my financial situation, I am unable to and I am very worried that I will be dropped as a patient from my LLMD.

Today I decided I would try to figure something out on my own to elicit some improvement before my next appointment. I went to the store and decided to add some more supplements. I can't afford to do a ton so I followed some of his suggestions and added some that I researched on my own.

I am going to get more aggressive with taking my supplements routinely. I have been slacking on them. I don't get a ton of advice about supplements unless I specifically ask. I took a break to let my liver calm down and I've been afraid to go back on since finally getting normal enzyme levels.

So I'm now adding calcium, d3, b-complex, methyl b12 sublingual, flax seed, and kyo-green energy. I am going to be getting more on schedule with ALA, NAC, milk thistle, and magnesium (which I have had to increase to 2000mg to stop my twitching lately). I'm also increasing my decaf green tea intake.

Hopefully something will turn around soon. I am pretty worried. I have a VERY hard time trusting doctors and I was just starting to trust my LLMD's judgement after seeing him routinely for months. I don't know what I'll do if he turns me over to someone else. If that happens, I will be out of luck as I cannot afford treatment or appointments with the other area LLMD's.

I also am having some issues this week with blood pressure. I felt really cold the other day amidst the heat wave and I was also very dizzy and weak. I checked my blood pressure in a store and it said "out of range." The machine was working for others so I walked around a while and tried again about 30 minutes later. When I got a reading it was 83/60. I'm on meds that are used to raise blood pressure (florinef and cortef). I'm thinking this isn't good...........

Monday, July 16, 2012

Lyme Symptom Tracking Chart

I am someone who likes to keep track of my symptoms on a chart for my LLMD. I feel that by writing things down, I'm more confident that I'm not forgetting to mention something that may be important. Sometimes I also just don't want to bring things up in conversation. Writing it down seems a lot easier. Then my LLMD can determine if it's something we need to discuss. It makes the appointments more streamlined and leaves extra time for questions and discussing treatment plans.

So when I go for an extended amount of time between appointments, I make sure that I bring a chart that describes anything that has changed since I last met with him.

I have posted a sample chart as a template for anyone to use. Feel free to share it with anyone who may need to keep track of symptoms for their doctor. To access the template click here. Then you need to click file and download the form to save it to your computer and fill it out with your info.

Sunday, July 15, 2012

Are all Pharmacies Like This?

Since I really have never needed to use a pharmacy for anything, I don't have much experience with them. However, the experiences I've had since needing  to use them have not been good. I am in a VERY rural area. The nearest pharmacies are between 40 and 60 minutes away from me. So when I need a prescription, I want to make SURE it's ready before I drive an hour to pick it up.

 Nearly every time either I call to confirm or  they call and tell me my order is ready and it isn't even in stock! A few weeks ago I drove up to pick up two. Surprise! They only have a record of one and can't refill it until they hear from my doctor's office yet again. Even though the office confirmed this script several times already that day! One time I have had a pharmacy call me to tell me that the dose is wrong and dangerous (untrue, the dose was on the low side of standard for the medication prescribed).

Most recently I told them to ship my order to my home and a week later, they called to tell me the order hadn't shipped and they were waiting for me to pick it up! I asked them why they didn't ship the order when it was billed a week before and I was told it was going out the same day. The response: "I'm not sure."  I have been out of this medication for many days now. It's not the kind of med that should be started and stopped. So I ended up having to drive about 3 hours (with traffic) round trip for the 4th time this week! The amount of time and gas that I'm spending on pharmacy errors is outrageous.

The scary thing is, the same situation has happened at 4 different pharmacies! Big chain pharmacies as well as privately owned small ones. I kept switching to see if I could find a decent one, but so far no luck.

Friday, July 13, 2012

LLMD Visit

So I had a visit this week with my LLMD to go over my liver results. To my disbelief, my liver enzymes were completely normal. This includes bilirubin which has almost NEVER been in the normal range. I was told by another doctor that the bilirubin elevation was a genetic mutation (Gilbert's Syndrome) but I always had my doubts.

Unfortunately, despite the good news on tests, I am not feeling well whatsoever. This seems to be a common problem for me. I feel better when my liver enzymes are high than when they are low. My weakness is the worst when my liver is normal. I can't understand it.

Lately I cannot make it through the day. I am struggling significantly. I fall asleep between 3 and 7 p.m. and then lie in bed for a few hours before falling asleep again for the night. Then for the entire time I'm awake between (morning and noon) I am so tired that I really can't do anything.

The exception to this exhaustion is right after I get an IV of vitamins and glutathione. Throughout the week I take the vitamins orally, but they don't do anything for my energy or symptoms. If I don't do something active after my IV, I feel like I'm wasting it. I've tried just resting after an IV and then it doesn't make it last any longer so I figure I'll take advantage of my one day of energy to get things done and go jogging or for a really long walk. That's one thing I will NOT give up. I am losing so much muscle and weight, that if I stop that weekly walk or jog I will likely be headed toward becoming bedbound.

I am currently trying a new option which consists of two steroids in extremely low physiological doses for adrenal support. As most with Lyme know steroids are VERY risky when you have Lyme and co-infections because of their immune compromising properties. I worry about taking even a low dose although I know a lot of LLMD's use this dose for adrenal support. So far it is not working for energy. I had EXTREME thirst after the first dose and drank a massive amount, but since then I have returned to my normal thirst level along with my normal level of exhaustion and other symptoms.

I hope something turns around for the better soon. I don't know how much longer I can continue to get worse. I'm afraid that soon some of my symptoms will become irreversible.

Tuesday, July 10, 2012

Bruising

The other day I started noticing that I had a lot of bruises in a cluster, well more like a line down the side of my right upper thigh. This week I have been extremely exhausted (more than usual). I am struggling to make it through the day. I get to about noon and I really want to go to sleep. I stay like that until I get home and can lie down.

Once home, I either lie down and fall asleep for a few hours or I stay awake but very tired. It's like I'm so tired that I can't sleep sometimes. I'm also noticing some yellowing skin again. I know that's not a good sign with the liver issues I've been having. Rifampin makes me nervous about my liver.

I get the results of my first liver function test since being on Rifampin for 3 weeks today. I am hoping they will be okay, but since I'm not feeling any better on this protocol I'm not going to be too upset if I have to take a break or switch things up again.  

Lately I've been getting kind of scared. I used to be the person who was pushing my LLMD to try stronger doses and stay on meds. Fearless is how I would describe it. Ready to get these infections out of my body. Lately, with the weakness that seems to be getting worse, I worry that something worse than a herx or a harmless new or evolving symptom is going to happen. Like I will develop cirrhosis or have a heart attack. I'm afraid to do strenuous things and push myself because my body feels like it's going to give out soon.

If this protocol doesn't start working, I don't think I'll be as upset as last time about the suggestion of an MRI to get things into place for IV meds. I have up to this point been completely against IV's, but I'm starting to think that I may need them to stop Lyme from progressing. Maybe I can do them for a few months just to get on the right track and then switch back to orals. I don't know what I should do, but I can't keep getting worse like this.

Tuesday, July 3, 2012

Anxiety is Scaring Me!

Yesterday as I was near the end of my first Rifampin pulse, I started to get extreme anxiety and restless legs. My body felt terrible, but my mind was racing. I felt like I needed to exhaust myself. I needed to go running. My thought process was similar to the OCD I've had in the past about other things.

I went running in the morning. It was really hot out; mid-80's in the shade. I knew I was overdoing it because my dog could not keep up with me on the run. I went 5 miles. I came home and took a shower and tried to go to sleep because I was very tired. My body was tired, but my mind and anxious-feeling legs were preventing me from falling asleep. I could not relax.

Later that day I went running again! Another 5 miles. I came home and still had tremendous restlessness and stress. It lasted from 5:00 a.m. until midnight when I finally caved in and took some benadryl hoping it would help me get to sleep. Today is the last day of my first pulse and I am afraid to take any medication. Is this the type of thing I should call my LLMD about or is it just a herx? I hate calling every second. I already called once this month when my throat was swollen (again from Rifampin).

The anxiety and exercise OCD has happened once before. It was when I was taking Biaxin. My liver enzymes were also very high the last time this happened. I think this time it was more intense. It still does not feel like healthy energy. It's over-the-top and purely stress motivated exercise.

I'm happy that I seemed to herx on Rifampin, but so far I still don't have improvement from it. I guess it's too soon to tell, but I hope that soon I will have significant improvement. When that happens, do LLMD's keep you on that combo or do they switch it up again?

Friday, June 29, 2012

Here Comes the Rifampin Herx!!

After going the week without any noticeable changes, I can safely say that I feel worse yet again after doubling the Rifampin dose. I didn't think it was possible to get any worse, but I have. I had two of the best days I've had in many months earlier this week after my glutathione IV. Then I started to feel pretty bad when it wore off.

The first thing that happened was extreme weakness and I was also very agitated and worried. I kind of felt depressed, like a total failure in life which is pretty out of the ordinary for me. I also had some pretty severe worrying/anxiety which is continuing (hence being up and writing this at 12:30 a.m.).

Next came the numbness. My legs and arms have gone numb so many times yesterday and today. Sometimes I'm having painful pins and needles, other times I just can't move or my limbs feel like something's holding them down.

I'm also having a lot of pain and weakness in my arms and legs. My muscles hurt really badly. I cannot straighten my arms or put them above my head. My knee has been very painful like it's not in the right place or something.

The fatigue is back very strongly and so is the insomnia. I was so tired today that I almost fell asleep at work. I was also freezing cold and wearing a blanket outside in 90 degree weather. It felt like I hadn't eaten in days. I thought eating would help my weakness, but it didn't.

My sense of smell has gone over the top since I started Rifampin. Every little smell is super strong to me. I also feel very strange. My body doesn't feel right. It feels like what I would imagine being drugged is like.

I'm a little worried, but I trust my LLMD, and I don't think he takes any unnecessary risks. If anything, he's probably one of the most cautious of the LLMD's that I know of. I just hope my liver is holding up. I notice a slight tint of yellow to my skin (which isn't unusual since my bilirubin is ALWAYS high). Sometimes I worry that some of my "herx" symptoms may really be a liver issue acting up.

Wednesday, June 27, 2012

Finally a Good Day!

After a few days of no improvement in my throat with benadryl and advil, I decided to try to drink some of my liquid Nystatin (anti-fungal). My tongue was getting completely white again so I figured Candida might be to blame. Luckily, a few doses gave me back my ability to swallow without pain and I was able to eat and drink again!

I was allowed to restart Rifampin and the rest of the week I felt the same as always. I was very tired with a lot of eye twitching coming back and hand and leg numbness returning. I don't think I've had a herx yet on it. I have felt this way for months whether I'm on or off meds.

I am not eating well and haven't been for a long time. I know that the amount of calories that I'm eating combined with the level of physical activity that I have to maintain at work is eventually going to catch up to me in a negative way. So now when I do eat, I make sure it is a very high calorie food like whey protein shakes in coconut milk, coconut milk ice cream (no sugar) and nuts.

When I went to my IV this week, I was not feeling well. I was extremely dizzy and getting very frustrated again because the last several times, my IV has not really helped me like it used to. The last time I had one, I tried to go for a walk and my heart started beating so fast and I became so instantly ill feeling that I felt like I needed to lie down IMMEDIATELY. I came home, took a cold shower and then started to throw up 3-4 times before I fell asleep in an unusually short amount of time (5 minutes or less). When I woke up I felt better for a few days, but my energy was not good enough for any further walks and definitely no running.

This week I was not in the best mood at my IV appointment. I was so tired that I just didn't feel like talking much. I feel bad about this now. I could have been friendlier. I started to get really dizzy during the IV. Likely from not eating much over the past several days. In the back of my mind I was thinking, there is no way that this IV can work well enough for me to go running this week. I'm way too weak and sick.

Well by some miracle, the IV actually worked better than it ever has! By the time I got home, I had a normal appetite and ate quite a bit. Then I decided to go for a walk which quickly turned into a 5 mile jog since I was feeling so good. I jogged up the steep hill with no heart problems. That is extremely rare for me lately. I had enough energy to jog up the hill that comes right before I get back to my house as well. I had absolutely no joint or muscle pain, dizziness or fatigue for the 6 hours that I was awake. I was even able to play one of my musical instruments; something I have not wanted to do for many months since I have lost the ability to move my hands as accurately as is needed to play with any level of skill. Then I had a good amount of sleep. Not anxiety ridden and not total exhaustion either.

I woke up at 5:00 a.m. the next day like always and most of my symptoms were coming back. I was pretty weak again already. However, this time I wasn't upset. I am SO happy that I got a few hours to go running and feel normal. I was really worried that I was going to lose that too. It's the first time I've gone that far without pain or symptoms popping up. With the way I've been feeling the last few months, I would have been happy with as little as 10 minutes of relief.

I will be happy to report the good day to my LLMD and the doctor that does my IV next week. I always feel like I have nothing but negative things to say. That's one reason I'm sometimes quiet at appointments. I don't want to be a chronic complainer and negative all the time, but there have been a lot of weeks lately that I really can't find anything positive symptom-wise.

Friday, June 22, 2012

Only Lasted 3 Days on Rifampin

Today was day 3 of a terrible sore throat. My throat was so swollen that I could not even swallow my own saliva without extreme pain. It was really hot outside today and I was so thirsty, but drinking was too painful; forget about even attempting to eat. I ended up calling my LLMD.

I did NOT want to. I knew if he heard the words "swollen throat" that I would not be allowed to continue taking Rifampin. I tried for the entire 3 days to take benadryl, gargle with salt water, take advil, eat garlic, drink tea, drink cold things, rinse with mouthwash etc. Nothing worked. I felt like my throat was getting worse so I decided to call. Now I have to go off rifampin for the weekend. I barely made it 3 days and I wasn't even at the full dose.

I am pretty worried as I've already been on a lot of combos and I'm running out of options. I've had allergic throat symptoms before from foods and this wasn't the same. This time my throat was very painful and swollen. When I'm having an allergic response, it's usually not painful and I often have some type of rash. My allergic reactions always improve with benadryl fortunately. There was no change to this sore throat even with high doses of benadryl. It didn't progress to breathing difficulty either. I don't think this was an allergic reaction, so on Monday assuming my throat improves, I'm going to call back and see if I can try to restart it.

Wednesday, June 20, 2012

I feel weird today

So today I woke up and took my first dose of Rifampin. I was a little worried about it. I was told to expect a headache. My doctor wanted me to wait to take it until daytime hours in case I had an allergic reaction or something I guess.

I definitely feel strange today but I can't tell if it's a herx or just a bad day. I've been feeling pretty terrible for weeks, so it would be hard to get significantly worse from where I was. I did have some new stuff come up today though. Coincidence, or is it the rifampin starting already?

Within about an hour of taking the first pill, I started to get a really sore throat. It felt like swollen tonsils. It hurts to swallow. I didn't have to go anywhere today so at first I just tried to catch up on some work on my computer. I wasn't feeling too bad, but my muscles and joint pain were kind of increasing and I noticed my twitching was back a little stronger than normal.

Then in the afternoon I started getting really tired and weak. My muscles were not working very well. I was exhausted going up my stairs. It was as if I had climbed 100 staircases instead of 1. I fell asleep for a few hours and woke up to some returning numbness and paralysis. My legs and my right arm were very numb. I couldn't feel them and I had no control to move them for about 10 minutes. Then I got tingling and the feeling slowly returned along with some lovely throbbing in my feet and ankles.

I feel very strange in my head today. Kind of like when you have a really high fever and you are in and out of awareness. You aren't really focusing on what's going on around you. I've been having waves of that all day. Several times I have just been lying down not wanting to do anything that involves my mind. I just stare at the fan not really falling asleep but not fully awake either. It's surprisingly worse of a disconnected trance-like feeling than I was getting a few weeks ago on Mepron.

I hope this is typical of Rifampin? I looked into side effects and it's so hard for me to tell what is a side effect and what's a herx.