Tuesday, December 17, 2013

Stevia for Cysts

All along since contracting Lyme disease in 2011, I've tried to use Stevia as my sweetener of choice whenever possible. Stevia is a reasonably good choice for people with Lyme because it's less likely to "feed" the bacteria or encourage Candida overgrowth. It's also less toxic than Sucralose and Aspartame.

Back in the early summer, I came across some research which suggested an added benefit of Stevia for those with Lyme disease. The study was from the University of New Haven and it focused on the effects of Stevia on Lyme cysts. I can no longer find the study online, but according to the notes I took, Stevia was shown in vitro to reduce Lyme cysts by 98% and spirochetes by 60%.

Doxycycline reduces spirochetes by about 77% but increases the cystic form. That's one of the reasons I've always been extremely hesitant to use doxycycline as monotherapy. My personal opinion is that no matter what stage of Lyme a person is in, doxycycline should always be combined with something for the cystic form whether that's Stevia, Flagyl, Tindamax or GSE.

The study also did some research on Cumanda which was shown to be less effective for Lyme bacteria (although Cumanda is primarily used for co-infections). Cumanda reduced spirochetes by 24% and cysts by 4%. It reduced biofilm colonies by 43%.

The study was preliminary and had no information regarding dosages. I contacted Dr. Cowden regarding the Stevia dosage and he suggests 30 drops 2x per day for an average sized adult when used as an antimicrobial. I use the same dosage for Cumanda.

If Stevia can reduce Lyme cysts by 98% that would make it a great substitute for toxic medications like Flagyl and Tindamax. The effects of Cumanda on biofilms are also promising. I tend to herx the most on Cumanda. I feel like it brings out bartonella symptoms in me and hopefully is killing off some of it as well.........

Tuesday, October 15, 2013

Restarting Herbs.........

Well a few days ago I was in a very scary state of depression which only comes from herxing for me. It was really bad and it became the main factor in my decision to back down off the herbs. I was in a state where I didn't want to try any treatment any longer. I was extremely frustrated and nearly in tears as I was telling several different people the thought that I usually keep to myself: That I don't think anything is going to improve from Lyme treatment if it hasn't by now. I still feel like that is a realistic and probable statement for my situation, but I'm normally not so emotional about it. I very rarely cry about my symptoms or Lyme. To me, when I'm thinking logically, it makes no sense to cry about things because crying never improves the situation.

I wouldn't go as far as to say I was suicidal, but I was extremely frustrated and angry and purposely exceeded my exercise capabilities (while on a heart monitor) because I really didn't care if something were to happen as a result. I don't have much to lose anymore. I've already lost my career, my athletic capability and my ability to function like a normal person. "Exceeding my exercise capabilities" at my current level of health means going for a short walk on a slight incline. Prior to Lyme I was running and hiking 10+ miles up mountainous trails daily.

Along with the depression, I was very physically sick. I was vomiting with a severe headache, rib pain, neck pain, tremor in my arms and legs, extreme fatigue, muscle weakness and exhaustion. I couldn't see a thing out of my left eye which made me very motion sick and dizzy. I was also having muscle spasms in my mouth and eye which are rare for me.

The vomiting was great........I was literally throwing up at a park with my friend's kids sitting in a sandbox a few feet away. I live in a small town, and everyone at the park knew me so it was a pretty embarrassing situation. It doesn't take long for word to spread. The entire town probably thinks I have a horrible flu strain by now. I wanted to just crawl into bed and sleep forever, but unfortunately that's not an option.

So I went off Banderol, Samento and Cumanda. My headache was killing me and I wasn't getting any relief from Advil, Tylenol, Excedrin, etc. for many days. As a last resort I tried Quina again and it stopped the headache after the first dose. That's the 2nd time that Quina has resolved a very severe unresponsive headache for me. I remained on A-BAB and did a few doses of Enula as well.

Tonight I'm changing up my plan. I decided to restart the Lyme herbs in a different way. I've only been off them for 48 hours but I feel like I need to get back on them and deal with the herxing because there is never going to be a "good" time for me to do this. The longer I wait, the worse I get (in my opinion from permanent progression). I don't like the slow ramping up method starting at 1 drop. I feel like that could increase the chances of resistance developing.

So I'm going to do Banderol (30 drops) and Samento (30 drops) two times per day. I will do this for one week and then I may add in A-BAB again. On November 1st, I will keep Samento (30) and add Mora (30) and Cumanda (30). After a week on that, I may switch the A-BAB to A-BART. This is fairly close to the suggested Cowden protocol for month 3. I will have the detox herbs to use as needed. I plan on using them this time along with the serrapeptase and magnesium.




Sunday, October 13, 2013

Bad Night..........I'm Backing Down

I am not doing well. My depression and anxiety are severe and I'm having a very bad headache and fever that I can't sleep through. I'm also having a lot of unusual pain in my ribs and lower abdomen which is making me worried about my liver and kidneys. I'm backing down off my protocol tomorrow. I'm stopping Samento, Banderol and Cumanda until I get my "month 3" package which comes with the detox tinctures and then I will try to restart.

I'm going back to Quina (30x2) and staying on Enula (30x2) and A-BAB (10x2). I can't go completely off everything for any significant length of time because I'm worried about progression. So tomorrow I'm going to drink tons of water to detox and stick to the above three herbs along with B12. I'm angry that I can't manage this herx, but it's getting to me both physically and psychologically. This is the first time I've ever needed to back down from herxing. I didn't expect herbs to be this strong............my opinion about herbs is changing.

I think it's definitely herxing because it didn't start right away. It took over 2 weeks. Normally when I used to start new antibiotics, week 2 was my "good" week and herxing started in week 3. With these herbs, week 1 was considered "good" (it got me up and out of my bed-bound state) and during the beginning of week 3 (day 16), herxing escalated to the point that I had to admit for the first time I was not able to handle it physically or psychologically.That has never happened with antibiotics.

I will try everything again though when my full protocol arrives and I have detox tinctures to help out. For the rest of this week, I'm cutting way back. When the herx dies down, I will restart. I may wait until November 1st so that I can keep track more easily. The protocol I'll begin with will be Samento (30x2) and Banderol (30x2) for 18 days and then Samento (30x2), Mora (30x2), Cumanda (30x2) for the remainder of the month as the "Month 3" protocol suggests. I may add in A-BAB until I complete the first bottle and then move onto A-BART. I may also add Enula (which I found in a locally made tincture) for $10/bottle.

Tuesday, October 8, 2013

October Update

I'm not going to say much in this post because I'm still not in a great place emotionally. Last week I was able to get up and attempt a few walks. I was no longer nearly bed-bound like I was a few weeks ago. I'm still very upset and depressed and I feel like any type of Lyme treatment at this point is only going to be able to get me to my "typical" level of symptoms which is not a good place to be. I don't like doing everything in my life sub-standard. Even simple things like folding clothes, buttons, holding objects, going up steps, driving, walking to the bus stop, etc. are 10x as difficult as they would be normally. I wish that I had something other than Lyme. I want to have a clear-cut diagnosis and a definitive treatment that works.

Here is my self-treating plan. I've started it all so far. My symptoms became really bad when I was off all treatment so I had to jump in and start herbs aggressively. I waited until things couldn't get any worse and that was too long. By week 5 of no treatment I was unable to get out of bed due to fever, an excruciating unrelenting headache, neck and muscle pain, dizzy spells, vomiting, numbness in all of my limbs, extreme fatigue, etc. It persisted and worsened for many days and didn't appear to be improving. It was one of the first times that I was extremely scared by my symptoms. So this is what I started:

Daily

Samento 20 drops 2x per day
A-BAB (Byron White) 10 drops 2x per day
Cumanda 15 drops 2x per day
Enula (Elecampane tincture not nutramedix brand) 15 drops 2x per day. 

In rotation (2 weeks on)

Banderol 20 drops 2x per day
Quina 20 drops 2x per day

So each day I take 5 different tinctures 2x per day. They need to be taken away from each other by 15 minutes and away from food (2 hours after and 30 minutes before eating). The A-BAB should be taken 20 minutes from other herbs. So every morning and evening there is a 3 hour and 35 minute window that I cannot eat. I have a busy schedule most days and by the time I get home I just want to eat and go to sleep; not go through an elaborate tincture routine for hours. It's very inconvenient. The herbs seem to have stopped the progression that was clearly happening by week 5 of no treatment, but that's it.

What I really want at this point is to just cover up the symptoms. I want to treat things symptomatically (with supplements or herbs not medications) and ignore Lyme for a while. I'm tired and Lyme treatment doesn't help me anyway so I don't know why I keep trying..............If it hasn't worked by now in several years of aggressively treating, it probably isn't going to.

Monday, August 19, 2013

Heart Problems

So I was at my doctor's office for a regular thing and I mentioned how my heart has been beating strangely more often than usual along with dizziness, feeling "off" and losing the feeling in my arms very suddenly for no reason. I shouldn't have said anything...........

I had a mild fever and apparently even though I could barely feel the heart palpitations at the time that I was in the office, apparently my heart was beating abnormally. So another doctor came in and said he thought it was A-Fib and told my PCP to send me for an EKG and I have to go to a cardiologist before I can resume any Lyme treatment. Since I've had this symptom all along, even prior to seeing my LLMD, I have no idea what suddenly made it so urgent. I had to go to the ER for the EKG since it was after hours. I did the EKG and I'm home, but now I'm in a full panic attack because I was pulled off all medications and the last time I was off everything I declined very quickly and had seizures.

I'm losing it emotionally. I feel like crap and I'm so weak that I'm near collapse, but I had to go running many times to keep my mind off my germ OCD. I am extremely upset and crying. The entire time of the EKG and sitting around waiting in various beds and chairs I was focused on all the different things that my skin was contacting and the germs that were getting on me. I am literally sobbing right now because I can't take the thoughts of it. I showered obsessively last night but I still feel like there are germs on me.

So I went running at 3:00 a.m. I had to, and I will probably go again later today because my anxiety level right now is through the roof. It was pitch black and there were literally bats flying all over the place but I didn't care. I don't even care if something happens with my heart. Several years ago my dad was in the ER having a heart attack and was not helped whatsoever by doctors. They didn't even call a cardiologist. They allowed him to progress into full cardiac arrest and then they covered up the fact that they didn't treat him appropriately by falsifying the time that he arrived at the hospital on their forms. So my attitude has always been that if I'm dying, so be it. I'd rather die at home or out doing something I enjoy than rely on a hospital to do anything to help the situation.

The ER doctor I saw was a real winner...........The first question he asked me was if I'm a runner. Followed by "Do you do cocaine?" Ummmm..........yeah, I literally don't even take caffeine and does he actually think that if someone did use cocaine they would tell him? What kind of question is that? Other than those two questions, I was so vague in my answers that he just let me go. He was staring me down trying to figure out why I wouldn't answer his questions or discuss my symptoms with him. I didn't want his advice or his treatment. I wanted to get the EKG over with and get out. So I told him only about the heart palpitations and none of the other 20+ symptoms that accompany it daily.

I asked a doctor that I know socially about his feelings towards the cardiologist that I was referred to since he's worked with him in the past. He said the individual doctor is okay, but in general the cardiologists he's worked with do unnecessary procedures on people to bring in money. Those procedures cause complications that he has to deal with in his specialty and then the cardiologists expect him to cover up the fact that their unnecessary procedures created the patients' permanent disabilities.  So that makes me feel great about this referral..........   Plus the fact that nobody around here takes Lyme seriously so I can't even be honest about my diagnosis, symptoms, or even mention Lyme. I just don't want to do any of it. I feel like it's not going to be helpful in any way to go to a doctor that has no interest or experience in the complications of Lyme. Plus I'm already in a horrific panic attack and going to another appointment may put me over the edge.

Whatever. I don't care anymore about anything. I don't like to depend on doctors and I never did. I have no way to help myself with symptoms and no advice on what to do to prevent things from worsening in the time until the appointment. And nobody cares including myself. I don't know why or how I keep getting up every day. I've said this before. I would never intentionally harm myself, but I wouldn't care if I never woke up again. The way I function right now is a very low quality of life anyway.

Wednesday, August 14, 2013

Liver Enzymes Up Again!

Liver enzymes were one of the only things that ever came back abnormal for me from standard doctors before I even knew about having Lyme or began treating it. When I went on Rifampin last year and started doing glutathione IV's, my liver enzymes immediately lowered and have stayed in the normal range for almost an entire year.

Recently I decided to drop several antibiotics. I started to try some Chinese herbs but didn't feel any positive effects and was having an issue with the consistency and taste of the powders so I stopped those very quickly.  I then strictly started to follow a vegan low-fat diet recommendation suggested by an ILADS-affiliated doctor who believes I may have issues with biofilms or protozoal infection. I also added nattokinase, serrapeptase and a mixed enzyme and continued to not eat sugar or gluten. I eliminated caffeine and magnesium as well. My most current LFT shows elevated ALT, AST and Bilirubin and slightly low potassium. My liver enzymes are pretty much back to square one. They are close to the highest level that they've ever been. The medications that I currently take are not new. I've taken them very long-term. So my one objective improvement that can be measured by lab tests appears to be regressing now again.

It was suggested that the elevations may be from malnutrition. I don't think that's it. I have been absolutely starving over the last several weeks and eating far more than I used to. Mainly gluten free cereals, almond milk, veggie burgers, rice, oatmeals, fruits and vegetables. I have not restricted in terms of calories and I haven't had any additional weight loss although I was already considered borderline underweight with a BMI of 17.2.

I did notice an increase in heart palpitations, pain and fatigue. I have really not felt up to doing anything lately. All I want to do is sleep. There were many other components to the biofilm protocol but for the first time, I didn't feel well enough to jump into everything at full strength.

My thoughts are that this increase in liver enzymes is likely due to going off Rifampin (although there is a reason I don't want to go back on). I also think that it could be a result of eliminating magnesium and adding systemic enzymes both of which may be increasing the absorption of antibiotics and the dieoff of bacteria which would be filtered through my liver. I also think that it's possible that one of the infections is starting to regain control of things now that I drastically weakened my treatment protocol.

I don't know. I'm speculating like everyone else I guess. I'm waiting to hear back from doctors that are consulting about what to do. I won't get upset this time about going off things or testing for other contributing factors. At this point as long as a proposed treatment doesn't involve steroids or addictive substances, I will try anything.

Wednesday, July 10, 2013

Doing things on my own.....

Today I started Japanese Knotweed, Artemisia and Houttuynia. I have taken knotweed and artemisinin before. Houttuynia is completely new. This was not suggested to me by anyone. It's something I'm doing myself. My LLMD and the other doctor I go to don't know yet. I recently went off of 3 out of 6 rx antibiotics. I didn't feel any better after doing that so I became pretty depressed, frustrated, angry and felt like giving up completely. Then I tried to calm myself down and think logically. I figured I might as well stay off those 3 and add in herbs as powerfully (and affordable) as possible. I'm staying on 3 rx abx for the time being along with the new herbs.

In regards to herbs, I want to decide my own dosages and take as much as I feel comfortable with. The doctors I go to would probably not agree with the dosages that I will eventually work up to. After two years of constant symptoms that have not improved and are drastically affecting and ruining my life, I would rather hit this as hard as possible then plod along feeling like crap forever. I really don't care about the consequences of taking too much (if that's even possible). At this point, I have no quality of life anyway. Today I mixed 1 tsp of each herb into juice. So that's about 4000 mg of each. When I took capsules of Japanese Knotweed in the past, I took 500 mg 3x per day. So this is a substantial increase in dosage. We'll see what happens. It was definitely hard to stomach.


Saturday, June 29, 2013

CD57

So I had my CD57 retested a few weeks ago. I do not place a ton of value in this test based on the research that was presented at the ILADS presentation in 2012. Apparently the number can fluctuate by as much as 60% in a day and it is questionable whether other conditions can also lower this specific subset of NK cells.

Although I don't think that it's a clear-cut measure of remission, I do think that those who have tested with a low number can use it to guide treatment somewhat. In my case, I had a CD57 of under 20 before treatment. Now, after two years of aggressive treatment, it's even lower. In my situation it does coincide with how I feel. I feel severely ill 90% of the time.

Friday, May 17, 2013

Armour Thyroid

I got the results back from my thyroid and hormone testing. The only abnormal results based on the reference range was my sex hormone binding globulin (high) and Free T4 (low). My TSH was 3.3. And my reverse T3/free T3 ratio was 15. I showed some mild anti-thyroid antibodies as well.

Don't ask me to interpret these. I had a very had time focusing at the appointment for some reason. Normally I understand things (including medical data) very well but this week I'm completely exhausted. All I heard was that it was up to me to decide if I wanted to do a trial of Armour. I decided to try it. At this point I'd pretty much try anything.

One thing I don't understand about the range is that all sites say that for people on thyroid medication the goal TSH is around 1.0. Yet a "normal" range for those off of meds is up to 5.5? That doesn't make any sense. If optimal is 1.0 why are people with a 5.5, 3.0, 2.0, etc. considered "normal?"

In some ways I'm really happy that my thyroid was not completely normal. Part of me hopes that some of my symptoms will go away easily with treatment for hypothyroid. I've gotten to the point where I wish I had another disease other than Lyme to explain my symptoms. Treating Lyme is so frustrating because of all the uncertainties and the length of time it's taking to see improvement. I wish I didn't have to take anything at all anymore. I just want to feel normal again. I'm afraid that if I start Armour I'll be on it for life. That upsets me the most.

I'm completely disgusted and mortified at the thought of consuming a dried pig thyroid. I have OCD that I've written about in the past. It's self-diagnosed because I don't discuss it with anyone and it's germ related so this is going to set it off. I mentioned this at the appointment, but I think that the doctor thought I was kidding. They have no idea how severe my OCD can get.

I'm just coming off of a VERY bad time last week where my mind was racing and I was in a total breakdown state of anxiety. I couldn't eat or sleep all week. I had gone off B12 because I'm sick of having to rely on things to feel normal. That was a mistake because my anxiety/OCD quickly became completely out of control to the point that it scared me.

This week I've been back to my "normal" level which isn't very good. I'm having a ton of heart palpitations though which are kind of scary. They aren't provoked by anxiety or activity. I don't know what to make of them but nobody else seems concerned by it so I guess I'll just ignore it.

I was asked by my LLMD what my timeline is and when I will take a break. My timeline is simple: I don't have an alternative so I will keep trying something until I improve. To me it doesn't matter how long it takes. I cannot live my entire life feeling like this so I'm not going to settle. 

Tomorrow morning between 3-4 a.m. I will take the first dose of Armour. I hope it goes okay. I'm a little worried that I will lose even more weight while taking it. I'm already underweight. The doctor said I might get more heart palpitations but they aren't dangerous. I'm a little scared about it. To me they feel dangerous and abnormal.


Friday, May 10, 2013

Horrendous Anxiety

A few days ago I was incredibly stressed for no reason and couldn't calm myself down. I was unbelievably overwhelmed and upset. That level of anxiety has happened before. I remember it clearly a few times. It usually happens when I first start meds and usually B12 keeps it at bay. Lately I have been skipping B12 and other supplements. It crosses my mind that it could be a side effect of one of the antibiotics, but I don't think it is. I think it's the diseases. I haven't changed any meds in many months. This came out of nowhere along with the increase in temperature outside. In my opinion, the weather change set it off.

The other day I had to take 50mg of benadryl and some ashwagandha and magnesium. I hadn't slept in days and I wasn't eating. My mind was racing from one thought to the next. I was so upset and was constantly crying for no particular reason. Well, I have some reasons, but nothing that I haven't dealt with before. Everything is so difficult for me sometimes. I can't run anymore and I don't even want to attempt walks. My whole day consists of trying not to collapse in exhaustion. Sometimes I completely hate how my life is. I just can't be positive.

I was really nearing a breakdown and then I had to add back artemisinin for another pulse. I was pretty nervous about that but now my symptoms seem to have reversed back to total weakness and exhaustion. I am trying licorice root tincture. The anxiety seems to have lessened since I started that, but I'm very skeptical that it could have been coincidental. I believe the only way that licorice root could have helped anxiety would be by normalizing cortisol levels which I don't believe are abnormal for me. 

Friday, May 3, 2013

Heart Issues

I'm having a lot of heart palpitations this week. I don't know what's going on. I haven't changed any of my meds or supplements in the last 5 months. The other day I was at an appointment and the doctor asked if it was happening at the time. I said no because I didn't think it was. Then I felt a single unexpected skipped beat that he picked up. Still, that's nothing like what's been happening in random spurts for days. It's like my heart skips multiple times in a row. It's extremely often and it's away from exercise and lifting.

I'm also getting anxiety again. It's not from the heart palpitations and anxiety wasn't the cause of them either. It's building from everything that's going on lately. I just can't calm down. My mind is constantly racing from one thing to the next. I was asked if I have ever done an EKG or worn a Holter monitor. I haven't. I don't want to do it. I'm sick of tests. They never show anything and even if they did show something what would be done about it? Probably nothing so I don't even want to know.

I'm in my 20's and my heart should be fine. I just want all of these symptoms to go away. I want to feel like a normal person and not have to worry that I'm going to have a heart attack. Someone very close to me died suddenly of a heart attack right at this time of year. Doctors didn't help. That's where a lot of my mistrust comes from.

I had a tick on my back this week. I had another in my hair the other day that came out on a brush. I also had a barely attached one on my neck a few weeks ago. I was at a friend's house and their kids were playing outside. When the one year old came in to get his diaper changed he had 3 deer ticks inside his diaper. It's a bad season this year. If you don't already have Lyme (or even if you do) please be careful. 

I had a glutathione IV this week and had two really good days. I still am not able to running or for walks or hikes but I felt substantially better and closer to normal than usual. It was really hot out so I took the kids up to a pond to swim. Pools aren't open in the Northeast until Memorial Day. When we got there, the entire pond was dried up. The kids weren't disappointed though. They were eager to play in the massive mud pit! There were tons of salamanders all over the place. Since I was feeling pretty good, I allowed it but it was disgusting and soon my germ OCD got the best of me. I was sinking up to my waist in mud. The only place to wash off was a tiny ice cold stream running through the middle of the crater. As soon as you stepped out of the stream you fell back into a sinkhole of quick-mud. Then the 7-year-old pulls off her croc and tells me there are slugs in it. I go over to look and there are leeches in her shoe.

Even though that sounds like a horrifying bad experience, I loved that day because I was close to my "normal" pre-Lyme self. Unfortunately, it's artificially induced by glutathione IV's. I can't get anywhere near that level of improvement with any other method (and I've tried a lot of things). I always loved teaching and taking kids out to catch frogs and salamanders, swim, and be active outdoors. Lately I'm barely able to even walk around at a playground supervising. I can't stand my weakness. I don't even feel like myself except when I'm on glutathione.

By the 3rd morning, it felt like a truck hit me with all my normal symptoms returning. This morning as I'm trying to eat my bowl of gluten free cereal, my hands are trembling so much that I can barely keep the milk on the spoon. I just woke up and I'm already incredibly tired. If I could sleep the entire day every day that's what I'd do. Unfortunately sleep makes me a lot weaker physically.

Next week I get the results of my thyroid and hormone testing. At this point I'm really hoping something comes back abnormal. I know that sounds really weird but because nothing ever shows up on blood work or tests for me I feel like I'm crazy. How can I feel this bad all the time and be considered perfectly healthy based on testing?

I know I have Lyme because I'm CDC positive with a low CD57 and the symptoms match up perfectly with Lyme and co-infections. However, sometimes I wish I had something else. A thyroid issue would be fairly easy to remedy compared to this.


Wednesday, April 24, 2013

More tests

Yesterday I had 4 vials of blood drawn for more tests. This time the tests are for thyroid abnormalities, hormone levels and vitamin D. Does anyone want to place bets on how many come back normal? I'm predicting all of them. So far almost every test I've ever gotten has come back normal despite how crappy I feel 100% of the time. I guess this is why doctors always think people with Lyme are hypochondriacs. I feel like I'm dying, but my tests reflect a completely healthy person. What's even worse is that because I never have abnormal tests I feel like there is no "cure" or help to feel better. It's discouraging. It makes me feel like I'm crazy. How can I feel so horrible and be in perfect health on tests?

The only tests that have been abnormal were liver enzymes, Lyme western blot (CDC positive), CD57's, and parvo B19. That being said, I never actually saw my test results in person when I had tons of them done with the first "regular" doctor I went to. He just handed me a checklist and checked off normal or abnormal so I don't have much faith in those results. My thyroid was checked as part of that original panel about 2 years ago. I have no idea which test that doctor used, but I would assume it was whatever would be the most likely to allow him to easily dismiss my concerns (likely a TSH).

Yes, I do have many of the symptoms of both hyper and hypothyroid. However, those symptoms carry over to Lyme as well. No, I don't get my period regularly (however I lost a ton of weight and am now underweight via BMI which I'm sure isn't helping that issue). I never got my period regularly anyway. It actually became closer to regular after I started taking antibiotics last year than it ever has been.

So knowing that I'm completely anti-medication unless the medication is directly treating the cause of the problem (which in my opinion is Lyme and co-infections) I was asked if I would be open to treating abnormalities in thyroid, hormones or adrenals. One of the potential treatments would be bioidentical hormones.

My answer to that.........I have no idea. I don't know the financial costs involved or the health risks. I don't know if that's a long-term thing that needs to be taken for life or if it will repair damage and I can go off it. I'm also very angry that I can't just treat Lyme and get rid of the damage that happened. I don't want to have lifelong medical problems. I wanted this to be cured and over with. I have a lot of research to do..........

Sunday, April 7, 2013

I'm too tired

I am not doing well this weekend. I'm incredibly depressed and stressed out. My car is breaking down. I have absolutely no way to afford to fix it and obviously no way to replace it either. I'm in severe financial trouble and I feel so sick all the time. I'm on my own. I don't have anywhere to turn.

Today my limbs were so weak and numb. I feel like they aren't even mine. I've been crying all day. I've been spacey and out of it. Very quiet, very tired. I'm just...........done. I don't  know what I can do anymore. I can't always figure something out. I feel like such a failure. Like my entire life I worked really hard academically so that I could be successful and now not only am I unsuccessful, but I'm losing everything that was ever important to me. I know this attitude is not me tonight. I just don't know what I'm going to do.............

Tuesday, March 26, 2013

Nightmare

Well it's 4:00 a.m. and I just woke up from a nightmare which is really unusual. I never dream. I'm off artemisinin. I've been on everything else for many months. This must be from one of the infections.

Here's how the nightmare went:  I was alone. I had no family anymore. I went downstairs in my house and all of the lights were flickering and the TV was on like a haunted house. I was very scared but since I had nobody left, there was no one to call.

I woke up with anxiety about what I'm doing (long-term antibiotics). I have no worries about the side effects or potential for risk. To me, the symptoms that I have from Lyme are a lot worse than the side effects I could have from antibiotics. My anxiety comes from being worried about creating a problem for my LLMD. It's very unusual for people to take several antibiotics at a time and I know eventually someone is going to look into it. Another LLMD recently lost his license in WI. I'm very worried about that. I don't want to be the reason why someone loses their entire career. I've thought about purchasing all my generics instead of going through insurance since insurance companies are usually the ones that start trouble for LLMD's. My doctor doesn't seem as concerned with the ramifications of treating Lyme long-term as I am.

I'm cancelling my plans today. I almost never cancel anything but I'm still not feeling well. I haven't recovered from the fever last week. That was a horrible week. I've never had so much pain jumping around my body. One minute it was my foot. It felt like every bone was shattered. The next minute it was my stomach. Then it jumped to my ribs. Next, my lymph nodes. Right now, the pain is manageable but it was very scary for a while. It felt like something was seriously wrong when I started to get such severe nausea and pain in my stomach. I was hoping it would end and it wouldn't be my gallbladder or something. I no longer have a fever, but I'm still very weak, dizzy and nauseous and I have a headache. I haven't eaten anything but white rice and coconut milk (sugar free) ice cream in days.

I think I'll go get a liver test later and just sleep for a day.  I can feel that something isn't right but I don't think it's because of my liver. That's the only test I have a standing order for so at least ruling that out will make me feel a little more confident about starting the next artemisinin pulse in a few days.


Friday, March 22, 2013

Wow.........I feel terrible

My fever is continuing. Last night it was 104 when advil wore off. I'm also extremely nauseous and in a lot of pain in my muscles and joints. I called to see if I could take Tylenol in rotation with Advil. In the past I've had liver issues so I never take acetaminophin. I can take it according to my doctor but I'm trying to hold off. I'm not sure what to do. I'm really very sick and nauseous and I'm losing weight quickly. I was already underweight before this hit.

I've been around a lot of sick people lately, but I never caught any cold symptoms. Just the fever. It was like a delayed reaction from my last artemisinin pulse.

Wednesday, March 20, 2013

Fever out of Nowhere

Yesterday we had a pretty big storm for March. It was the day of my glutathione IV so I drove up to the appointment which is 1.5 hours away. The roads were terrible. They weren't even plowed. There were many cars off the road, but I definitely wasn't going to skip an IV. I really need a break. I'm so tired. Unfortunately, I didn't get a good break this week.

After my IV I felt okay. I wasn't able to go running though. I had to supervise a kids' sport. I didn't get home until after midnight last night because of the snow and dangerous roads. To top it off, I cut my hand opening a can of soup and because of neuropathy, I didn't even feel it. A child was screaming that I was bleeding and I didn't even notice. Then I started getting really irritable and very depressed. I think going off B12 during artemisinin pulses is a bad idea for me. I get too upset. I get to the point that I don't even care what happens anymore. I'm very irritable and depressed. This morning I was completely wiped out. I feel like a truck hit me. I've tried to eat and get up for a bit. I'm so tired and it's right after an IV. That's very unusual. Sometimes I wish I never had to get up again. This level of weakness is pretty scary.

Later this afternoon I started to feel really bad and I wanted to go home but couldn't. When I finally had access to a thermometer, my temperature was 102. A few days ago it was 95.1. I don't know what's going on. This came out of nowhere. I haven't changed anything. My whole body feels terrible. 

In my last few posts I talked about the possibility of getting more glutathione. I'm not going to be doing that. There's an insurance glitch that's preventing additional IV's. That's fine though. I never liked depending on it anyway and I can still get the same amount I have been for the past year. I think it's good that I have to figure out other ways to get by. I'll find something.

Friday, March 15, 2013

More Vitamin IV's?

So I'm kind of in a weird position right now. I am on a very strong oral combination (6 abx and artemisinin pulses). Changing anything at this point would most likely weaken my protocol and that's not something I want to do. My medications and herbs target Lyme, Babesia and Bartonella adequately.

My doctor suggested last week that I get more vitamin IV's. Glutathione makes me feel substantially better. I almost feel completely normal after it, but it wears off quickly. So why do I hesitate to do more of them? First of all, it's nearly impossible for me to schedule it, even though the office is being extraordinarily accommodating. It's also not treating Lyme or helping to get rid of the cause of my symptoms in any way. That bothers me. I don't like to resort to convenience medications and symptomatic help. I would like to feel better on my own without using anything.

If something happens and I can no longer afford glutathione I will be very upset. It's literally one of the only things that keeps me going. After it wears off I count the days until the next one. I constantly say to myself when things are tough "Only _____ more days until I get a break." If I get used to feeling better by using it more often, it will be difficult for me to cut back. That worries me. I feel like an addict and a failure if I have to resort to IV's (vitamins) more often. IV's more often equates to not being able to handle things on my own. I don't like that feeling.

I feel the same way about dependency on the supplements that I take. I take 3000mg of magnesium a day to control twitching and heart symptoms. I skipped it last night and woke up 5-10 times from tremendous full-body twitches (apparently they're called hypnic jerks). B12 is the same. I'm reasonably normal mentally as long as I do the shot each day. When I skip it, I'm a crying depressed mess. I give up on trying to figure out ways around my symptoms and I have so much anxiety that I can't calm myself down. It scares me. I've never had any type of psychological issues before Lyme.

I miss how I used to be. I never needed supplements, vitamin IV's or antibiotics to function. I was hiking and trail running 10 miles a day, maintaining a high level of physical activity at work and doing full-time grad school at night. I had no problems handling that. In any free time I had I would go snowboarding, horseback riding, swimming, playing with Celtic bands, going out with friends, etc.  One tick bite and fever changed my entire life. I can't do any of that anymore.

Do you know what my accomplishment was this week? What I was so happy that I was able to do? Hold an infant up for an hour. Normally that's not even something I would think of as being challenging. Another one? Stand still and kick a soccer ball back and forth with a child for 30 minutes. After that 30 minutes of "soccer" I started shaking so much that I felt like I was freezing to death. When I finally got around to finding a thermometer I assumed I had a fever, but my temperature was 95.1.

Today I forced a walk with my dog. He has not gone on a decent walk in months. While on the walk, my knee felt like the joint was scraping bone on bone. Several times I became very tired and weird feeling. I stared at the ground. I was too tired to even think. Even my dog thought I was nuts and started jumping all over me. When I returned, I laid down and a few minutes later was having a very difficult time moving my legs. For a normal person, these symptoms would be highly concerning, but for me they're just part of a typical day. I'm in my 20's and my body feels like it's 100 and nearing the end.

So my feelings about more glutathione IV's are mixed, but I did add some in each month. Both of the doctors that I see are helpful. I trust them and I respect their opinions (although I have definitely not always agreed with them).I know that it's a big risk to treat a Lyme patient long-term and I appreciate that they have taken that risk for me. I know that they probably think more IV's will make things easier. They will.......physically, but I don't like having to accept that I need more help.I'm rationalizing this over and over in my mind by saying that it will help me stay on a strong combination to get rid of Lyme permanently.

Monday, February 25, 2013

I'm on the edge today

I am extremely angry and frustrated today for pretty much no reason. I'm on the edge of a breakdown. I absolutely hate what Lyme has done to my life. I feel like I don't even have a life anymore. My day consists of mustering up the energy to get out of bed and then sludging through the day counting the minutes until I can lie down again only to start another horrible day all over again the next morning. I've lost the ability to go running, play music, walk my dog, go for walks, go shopping, go skiing, cook, work effectively, use my hands, etc. Basically I've lost every part of myself and everything I've ever found any happiness in. The one last thing I've been holding onto was motivation. I have always persisted in treatment and continued to figure out something new to try. Now I'm losing my motivation as well.

I'm so angry! I have been on so many combinations of medications and herbs over the past 1.5 years and I continue to get weaker and go crazy psychologically. The past several weeks I've started getting to the point where I don't have any desire to do anything anymore. Everything is getting too difficult and too stressful for me.

It used to be that I'd ignore my symptoms and focus my energy on researching something new to try. Now I have no desire to research things any further. I've realized that it doesn't matter how much I research. Researching something that could work doesn't mean it will work for me. So far nothing has. I can't stand the constant disappointment. Over and over I try something new, have hope that it will work and then lose all hope when it doesn't. Sometimes this disease is so cruel. For example, when I first started Flagyl in December,  I was expecting a horrible herx. Instead, I had one of the best weeks I've ever had since I first got acutely ill in September of 2011. That good week repeated itself the following month. I thought I was on the right track! Apparently not. After the 2nd good week things went downhill fast and I haven't recovered.

I've talked to many of the top LLMD's and tried a lot of their protocols. I'm running out of supplements, herbs and abx combos to try. I don't have money to keep trying things that could work and I honestly don't feel like any one LLMD has the answers. If they did, there wouldn't be so many people sick with this.

I've never felt like this before. I'm so enraged and full of anxiety and depression. I feel like things are never going to get any better so why continue to take supplement after supplement? Why go and get IV's of glutathione? Sure they make me feel better but only for a few hours to a day at most. I like the break, but it's never permanent. Why stab myself with a B12 shot every day? To cover up depression? I don't want to live like this anymore! At this point if symptomatic help was effective for my symptoms that's what I'd be doing. Even if I knew it wasn't addressing the underlying problem.

For now I'd better go look up some natural mood enhancers to pick up at a local store today. I'm never going to make it through the week if my attitude remains like this. This is what I was worried about with B12. The shots work fantastic, but I get horrible relapses of depression and desperation when I try to skip it (like today). I don't like the feeling of being dependent on things. I want to feel okay without help.

Saturday, February 9, 2013

Dr. H's Protocol: Notes from ILADS 2012

I wasn't able to go to the ILADS conference in person this year. It took place in Boston which isn't too far from me, but I wasn't feeling up to it, and I couldn't financially afford to attend. So instead, I watched from my bedroom and took meticulous notes particularly on New York's Dr. H. protocol.

I organized my notes into a booklet similar to that of Dr. B. Please do not take this booklet as 100% accurate. It was transcribed from his 2012 ILADS presentation. I'm a Lyme patient with a M.Ed. and a research background, but I could have made some errors in the packet. I don't have medical training and I'm not suggesting people self-treat with this information. Please do not attempt any of the protocols without consulting with your LLMD and please do not copy or distribute this information. It is meant solely to help individual patients plan different treatments. 

That being said, I think that many of you may find the info in this packet of enormous benefit to use in conjunction with your LLMD when determining potential regimens.

If you would like the packet of info please contact me and I'd be happy to send you the link to the PDF file!

Monday, February 4, 2013

I was wrong about artemisinin

In my last post I wrote about how I was starting a pulse of artemisinin (400mg 3x per day) in the middle of an existing herx. At the time I was about 5 doses in and didn't notice any type of change. Well, things definitely changed by the end of the 2nd day. Herbs usually don't affect me..........until I started this one.

I didn't think things could get worse but they did. I had severe chills, flu-like aching, head pressure, exhaustion, dizziness etc. It's still sticking around and I've been off for about 24 hours now. During the time that I was taking artemisinin, I stopped taking antioxidants. In my case that consisted of CoQ10, green tea, vitamin C, NAC, ALA and B12 shots. I've read that antioxidants interfere with artemisinin's mechanism of action. That makes sense to me because other anti-malarials (like Mepron) have warnings against using CoQ10 with them. I also tried to start the pulse several days away from my glutathione IV which is another potent antioxidant.

Having not reacted strongly to herbs in the past, the herx was pretty shocking to me. I didn't expect much to happen especially since the first several doses were uneventful. I'm off ART until the 14th and I'm not looking forward to having this level of herxing again. I've had to load up on every supplement I have along with advil just to get out of bed. The past 2 weeks have been pretty severe. I haven't had this strong of a reaction to many medications.

I was hoping that I had gotten rid of babesia with Mepron last year even though I wasn't able to take it longer than 6 weeks. However, the reaction I had from artemisinin seems to suggest otherwise.....I can't take Coartem, Mepron or Malarone. Cryptolepis and sida acuta are too expensive for me right now. I'm hopeful that artemisinin will be strong enough in combination with plaquenil and bactrim ds.  

Sunday, January 27, 2013

Pet Therapy

No matter how terrible I feel, I always feel better when I get home to see my dog and my cat. I don't have children yet so my pets are like my babies. They are completely spoiled. They eat only organic food, sleep in the bed, and have every toy sold at Petsmart. My dog is my running and hiking partner. I used to run or hike with him EVERY day 5-10 miles. I really miss that.......I wish that we could jog like we used to before I got sick last year. I know he wishes that also. Lately, I'm lucky if I can walk him 1/4 of a mile once a week. The rest of the time he has to go out and play in the yard.

Last week in the middle of my "good" days I got a kitten. I don't know what I was thinking. I already have bartonella and now I'm increasing my risk of re-infection. I couldn't help it though. I felt really bad for this little cat. She was so thin and her hair was stuck together and unkempt. Every bone in her body was protruding. She's about 8-10 weeks old. She's not the most beautiful kitten in the world yet, but I think she will look better once she gains some weight and becomes healthier. Her personality is pretty good. She's very sweet. As I'm typing this, she's curled up on my neck. She eats like she's never had access to food. She can gobble up a can of food in under 30 seconds. She also completely uses the litter box with no accidents. She doesn't act like a typical wild trouble-making kitten. She's very calm and gentle. I'm glad that she came at this time. She's cheering me up after I had another rough week.

I had that great week symptom-wise and now I'm back to my "normal" level which isn't good. I feel like I have a fever and I'm very tired. My feet were swollen today which is really unusual and I have no appetite. A few days ago I completely lost the feeling in my legs which hasn't happened since May. They were vibrating/tingling but without the pins and needles feeling. It took a long time to regain feeling. My hands have been losing feeling also. I couldn't see out of my left eye today and I haven't gone on any walks due to exhaustion and joint pain all week. The only thing that has stayed improved is my attitude. The B12 shots are helping me with that. For months I was ready to give up. I have never been suicidal, but I have thought to myself that I wouldn't care if something were to happen. Now I feel a little better. I'm ready to keep trying to figure something out that will help long-term.

Saturday, January 26, 2013

What's been Happening?


I haven't written in a while. That's because last week after I had a glutathione IV I felt absolutely great for a while. I was going for walks and in a fantastic mood. I had a busy week schedule-wise that normally would have wiped me out but I was able to handle it very well.

During that good week I had an unbelievably stressful day where my dog got lost, my car went off into a ditch while I was looking for him, and I had to listen to some of the most insensitive and condescending comments about chronic Lyme that are humanly possible (from an acquaintance who is a doctor!). I had a minor breakdown from the stress, but nothing like how that would have affected me normally. I found my dog and some very nice people lifted the back of my car out of the ditch with their hands so I didn't have to call a tow truck on a Sunday.  Plus I finally decided to stand up to the doctor's arrogant misinformed opinions by stating some facts based on ILADS research.

The doctor situation is aggravating. I have a working relationship with this person and he is the most anti-Lyme doctor in the entire area. For that reason, I've never outright told him my diagnoses. I'm sure he strongly suspects what I have now after our conversation the other day. Not many average people are aware of cystic forms, CD57's, babesia etc. I'm not medically trained. I normally keep my mouth shut, but his comments were unbelievable. I had to say something. If he fires me for being educated, there are worse things that could happen. Although instead of being educated, he groups people that seek long-term treatment for Lyme into the following categories: "hypochondriacs, naive, brainwashed, ignorant, and just trying to seek disability" LOL. See why I avoid talking to him?
 
My LLMD and the rest of the office could tell I was feeling much better when I saw them during my good week. I'm glad they finally caught me on a good day so they could see the difference in my attitude and how I am normally. I was so happy. It was great to have a break from symptoms. The main break was from the psychological feelings that this is never going to end. My physical symptoms were still sticking around during my good week but they were easier to handle when I didn't feel completely hopeless and depressed.

The methylcobalamin is working miracles for my mood. It helps me get out of bed and have a good outlook. I'm able to figure out ways around the symptoms  and stop myself from getting completely frustrated and giving up. It doesn't give me sustained energy though. I can feel the energy surge wearing off by the afternoon.

We talked a lot at my last LLMD appointment, but didn't change anything drastically yet. I wanted to change the way I  take Flagyl to all at once in the evening instead of 3x per day. I take 750mg at night now. My reasoning for that was concern that Rifampin is lowering the bioavailability of Flagyl. I'm thinking a higher dose 1x per day will result in a higher spike in blood levels. My LLMD said it was fine to try that as long as I didn't get any GI side effects (which I never do on any medications oddly).

We talked about artemisinin a little bit. Over the next week or so I'm going to start it. I believe that some of my very resistant symptoms and the lack of drastic or permanent improvement could be due to babesia. Over the past 1.5 years I was only able to treat with Mepron for about 6 weeks at a time. I tried it for that length of time twice and both times had to stop for liver enzyme elevations.

The dosage that I'm going to start with for artemisinin is the Nutricology/Allergy Research brand Super Artemisinin 180mg. I will be starting with 2 pills 3x per day for 3 days on 11 days off. The theory behind the pulsing (according to a Seattle LLMD who uses it this way) is that your intestines develop an enzyme by about the 4-5 day point on artemisinin that renders it ineffective. So I'm starting at the middle dose. You can use up to 500mg 3x per day for 3 day pulses according to this LLMD. Another option is to do the low-dose daily schedule that Buhner used to recommend. He no longer suggests Artemisinin due to side effects. He now uses Cryptolepis and Sida Acuta. I can't really afford to dish out that much on those tinctures. I know that a lot of the "big name" LLMD's are still using Artemisinin and pharmaceutical relatives like Coartem because they feel it is the strongest of the herbs. For now, I'm going with that.

I also talked to a doctor about my appetite. I'm losing too much weight. It was bad enough when I was hungry and eating. At least I knew I was getting nutrition. Lately I have no sense of hunger and I've been eating next to nothing. Size 2 jeans that I bought a few weeks ago are falling off me now. So I asked for some help with that. The doctor I asked is not my LLMD, but an ND who knows I have Lyme and how I treat it. He suggested Gentian in a tincture to increase appetite. I was VERY worried about taking this since it contains alcohol and Flagyl and alcohol don't mix, but he said it should be fine and so far I haven't reacted.

I haven't had an increased appetite since starting Gentian. The only thing it does is give me a bad taste in my mouth so that it makes it more likely that I will eat to get rid of that taste. Maybe it takes time to work. I'm not sure.

I wish I could say that I'm still feeling great and going for walks but unfortunately this week has headed in the complete opposite direction. I'm flu-like, feverish, I lost a lot of feeling in my legs the other day to the point that I couldn't stand up for a while, and I'm very weak, tired and spacey again. I'm also having a lot of heart palpitations and joint pain. However, I'll take physical symptoms over psychological ones any day.I feel so out of control when the anxiety and depression come on. I'm glad I'm able to keep that in check naturally.

Sunday, January 13, 2013

I'm scared today........

Today has been a tough day for me. I overdid things yesterday with snowboarding and that experience made me realize how weak I've gotten from Lyme. I haven't gotten up out of bed all day. I'm feverish, in a lot of pain, and very mentally and emotionally drained. My mind is completely abnormal. I feel completely out of it. I have extreme depression and anxiety and I can't stop crying. I'm so upset. I've been getting worse symptom-wise for months. I feel like I'm never going to be the same as I was or even feel somewhat healthy again.

I wasn't able to do a B12 shot today. I know that the lack of B12 is making the depression worse. My muscles are twitching too much. I was afraid that I would hurt myself if I tried to do it with twitching hands. I still have some fear after what happened the other day with the scary shot experience.  I'm afraid that will happen again.

I know I'm depressed when I'm not even looking forward to a vitamin IV. I don't know why I get so down and ready to give up. It's not like me at all and I think it could be either a side effect of one of my antibiotics or from herxing.

Either way,  I just feel like this combination is pretty much my last option and it's not working. I've tried everything but IV antibiotics (which I cannot afford). I'm worried that all of this will be permanent. I don't know how I will ever be able to live the rest of my life like this especially if it continues to get worse. I've tried so hard to get better. I've taken all kinds of antibiotics, herbs and  supplements. I haven't eaten gluten, sugar or dairy for a year. I just don't know what else I can do. I hate being out of control. I'm scared of how my life is going and I feel like there's no way for me to change it.



Snowboarding

Well yesterday I had a ton of anxiety and frustration about all the things I haven't been able to do since I've had Lyme. It built up so much that I decided to stop being cautious and I went snowboarding. I don't know what I was thinking. I woke up with a fairly high fever. I couldn't even put weight on my knee or my right calf without a brace or an ace bandage wrapped tightly around it. I was twitching like crazy as well. Nevertheless, I chose to go to a mountain that is considered pretty small and easy to navigate. The conditions were slushy since it was about 45 degrees yesterday. I was so sick of not being able to do anything. I thought snowboarding would be easier than trying to go for a long hike or running (which I have been very unsuccessful with lately).

In the morning before going I loaded up on advil, CoQ10, ginseng and I used the new increased volume of B12. This time I didn't have the massive twitch reaction that scared me a few days ago when I injected the B12. The new volume is 1mg suspended in a full ml. of solution instead of .5ml of solution. So a greater volume of the actual vitamin is able to make it past the IM needle. It made a big difference. That B12 shot felt much more potent. Without it, I would not have been able to get out of bed. I felt really bad from the fever.

Since my own snowboard is an advanced heavy one that is very responsive to any shift of weight I decided to rent one that would be a little easier to handle. On the way over to the lift I started getting really nervous. I was having a really hard time digging the edge into the snow in order to stop myself. The board was extremely slick. It was a very lightweight Burton board. Not wanting to be a wimp I just headed straight up to the top without any practice runs. I've been snowboarding and skiing for a long time so when I feel normal, I'm very confident on the mountain. My lack of balance made me feel more like a cautious beginner this time.

The first time down was a little difficult. I fell a couple of times but not badly. Then I started to get a little more confidence but I still stuck to easy and intermediate trails for the majority of the time. I was only able to make it down 2 times from the top and 2 times from the 3/4 point. It was okay, because the people that I went with were not the type of people who take run after run anyway. We rode the lifts up together but we split up on the mountain because we were all at different levels and speeds so I wasn't hindering anyone.

After about two runs, I started to get really lightheaded and I was seeing spots. Sure enough this happened right on time between 1:30 and 2:30 p.m. My hands were going numb and I was having heart palpitations. With my luck, this happened to be the one time all day that I was on a black diamond trail. I had to go over to the side and lie down for a few minutes. A few people stopped and asked me if I was okay and I just told them I was waiting for someone. Then I got up and made it down. 

I had a good appetite yesterday which is typical when I have a fever. I was able to eat a good amount of food without getting too sick although I was pretty nauseous for most of the day. Towards the end of the night my typical psychological symptom of uncharacteristic anxiety and depression returned. Today I'm back to really weak and tired again. I slept for 11 hours without waking up even one time. I feel like I could go back to sleep for another 12 hours.

I'm glad I went, but in a way I'm sad about it too. I am getting really scared lately because I'm losing the ability to do a lot of what should be normal and easy for me. Snowboarding yesterday was about 10x more difficult than usual.  I'm really not making any progress with my symptoms and I feel like yesterday may have been one of the last times I will be able to go snowboarding if something doesn't start drastically changing in a good direction.

Saturday, January 12, 2013

Scary B-12 Shot

So I recently wrote a post about how easy it is to do your own B-12 shots. As someone who really isn't a fan of needles (like most people) I have been doing really well with the shots. I've done about 20 so far and they were all painless (probably from the neuropathy I have) until yesterday.............

Yesterday was a "normal" day. I woke up extremely exhausted having just come off the previous day of blurry vision in my left eye, a headache and lots of twitching and nausea. I should have known that bad things always follow headaches for me. In the past I've had seizures right after headaches. Headaches are a rare symptom for me while I'm on antibiotics.

So yesterday I felt like crap but I needed to get up, so after getting something to eat and taking my medications I laid back down in bed and prepared to do my B-12 shot in my leg like I do every day. B-12 gives me enough energy to get up and moving for a few hours (by the afternoon I still crash).

I first attempted my left leg which can be difficult because I have to use my right hand to inject. I have too much numbness in my left hand to be reliable. Well as soon as the needle hit muscle, I had a tremendously painful muscle spasm that started in my leg and paralyzed my whole body for a few seconds. Thinking I had hit a nerve, I removed the needle and tried on the right leg. Again, right as I inserted the needle, my muscle spasmed PAINFULLY and I lost control of my hands and body for a few seconds again. Now I was getting scared...........I decided to try it again though because I didn't want to scare myself off of B12 altogether since it's the only thing that's helping to get me out of bed in the morning lately. The 3rd time it happened again!! This time I focused really intently on continuing to keep the needle in place. When the pain and twitching stopped, I slowly pushed in the solution.

Nevertheless, I was scared by the experience. It was very strange. I knew I had been very twitchy all week. I had a twitching attack at a doctor's office when I went in for a vitamin IV and I had other weird spacey things happening all week but this tops the cake. I have no idea what it was but it hurt and seemed to trigger something in my nerves/brain.

Today I did another one and it went okay. No extreme twitching or abnormal pain.  I received a new order from Infuserve. I had asked them to increase my dosage to a larger volume because I only take 1mg per day of B-12 and it was suspended originally in a .5ml volume. That meant that when I injected intramuscularly through a 1" needle, over 25% of the volume was left in the syringe. Therefore I was only getting 75% or less of my dosage. So Infuserve kindly compounded the 1mg into 1ml of solution. The syringe is much sturdier this way and about 90% of the solution makes it into my muscle. It creates a little more of a dull aching and soreness during the injection since increasing the volume 100%, but it's not unbearable. I'd rather have some discomfort if it means getting more of the dosage in.

Today I have plans to go snowboarding. I know without a doubt that it's an extremely bad idea with how I've been feeling lately. I don't know what I'm thinking. I feel terrible. I can barely move my knee and calf and all of my muscles already hurt from all the twitching that I had this week. I'm extremely exhausted and spacey and we're going in the afternoon which is my worst time of day. I know that this type of activity is going to be next to impossible for me. I'm far from a glutathione IV as well. However, even just going up and being around something that I used to enjoy actively doing is better than not doing it at all. I'm going to rent a beginner board and try to get down on some easy/intermediate trails. No jumps, black diamonds or half-pipe for now.

I'm aware that going snowboarding today will probably make me very ill and in a lot of pain. One thing it won't do is give me any setbacks or relapses. I haven't improved. I'm worse than usual right now so I'm not losing any progress by going today.  I'll be lucky to leave the mountain uninjured with the amount of dizziness, twitching and neuropathy I have that is likely to throw me off balance.

Sunday, January 6, 2013

Back and Stomach Pain

Ugh! I am having really severe stomach pain right now. It started last night. After a week of low appetite again, I went out to dinner and had a salad with a few bites of steak and some fruit and yogurt. Well within a few hours, I was throwing up. The rest of the night I had a burning pain in my lower back wrapping around the front of my abdomen. It has persisted and worsened today.

I'm in a LOT of pain. If I don't keep my mind busy, it's almost unbearable. I was crying last night from it. The pain is literally making me shaky and freezing cold. The only thing I can do is lie down on a vibrating heat mat, rest and shake from unrelenting chills under 4 blankets. I am completely non-functional today. I woke up and took 3 advils in the middle of the night and I just took another two mid-morning along with alka seltzer gold to hopefully calm my stomach.

I'm getting dehydrated because drinking anything is intensifying the pain (as is eating). I hope this goes away by tomorrow. I avoid calling the office, but this pain is pretty severe and unusual so if it doesn't decrease in a few days I'll have to call. In a few hours I'm going to try to get it together enough to cook some rice and chicken broth.

This pain could create a problem for me if I can't start eating and drinking soon. I was actively trying to force some eating so that I wouldn't lose anymore weight. On days that I was having a hard time eating, I would make sure to drink at least 1000-1500 calories. Now I can't even do that.  I don't want something within my control (weight loss) to be the reason why I have to stop meds.