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.