posted
I'm just so miserable and upset...I just don't know what to do anymore...I could really use your support right now...
I've been treated for lyme by an LLMD since November. During that time, I have tried the following antibiotics:
Doxycycline - just for a short time, because it caused me to have a seizure, so I stopped taking it. I don't think it helped me much anyway though, but I'm not sure, as I could have just been herxing and wasn't familiar with it, since it was the first one I tried.
Ceftin - for a little longer time, but I gained 15 pounds of fluid while I was on it. Even though I was put on Lasix and potassium later into it, it didn't completely alleviate it, so I had to stop taking it too. I do think it helped my brain though, although mildly, but noticeable.
Zithromax - stayed on it the longest, over several months. Initially it doubled my liver enzymes, but after a while, they came back down to almost normal. I did feel more tired and brain fogged, but felt like I was making slow, but steady progress.
Six weeks ago, I had a severe central nervous system reaction to Levaquin and have yet to fully recover. I still get very agitated and restless easily and am having to take Valium to calm my body down.
Now my LLMD wants to start treating me for Babesia with Clindamycin and Quinine, with some Tinidamax thrown in. I have already tried Flagyl, but couldn't tolerate it, as it gave me peripheral neuropathy.
I did try a small dose, only 25mg, then 50mg, of Artemesinin over a two day period, which caused me to herx horribly. I sweated so bad and could hardly move my head off my pillow for two days, not to mention had horrible depression. Does my reaction somewhat confirm a bad Babesia infection?
My delimma is, first, I feel like I am losing ground treating the lyme. How do I get around that?
Second, I gather that the treatment for Babesia is worse than for lyme. How do you deal with that?
Third, how does one differentiate an ongoing adverse reaction to a medication versus the rearing of coinfections, alongside a relapse with lyme, which should be treated?
I'm scared of getting even sicker from doing nothing, yet, at the same time, I'm not sure if I can handle anymore herxing right now. I also need to visit the dentist to get one tooth fixed and another extracted, but I'm scared of anesthetics now too, as to how they might affect my central nervous system.
I just cannot seem to get over what the Levaquin has done to my central nervous system though. Although I have improved some over the past six weeks, I still continue to have a lot of problems. It's like I'm tired, but wired, almost all the time. It's even been hard for me to eat, as it feels like it's even affected the nerves in my stomach, which has lead to me having a loss of appetite quite a bit, along with nausea. It's been hard for me to sleep too, as sometimes I just cannot quit moving and other times I'm woke up out of my sleep in a panic. I now have to take Valium to calm myself down sometimes from feeling restless, agitated, anxious, panicky, or whatever you call it. Maybe I just need to give myself a little more time? Does that seem reasonable?
I started having really bad pressure headaches, so I started a product called Ultra Clear Plus by Metagenics, which is helping me to detoxify and although I am herxing some, I do think it is helping. My PCP put me on it, as I am an imbalanced phase II detoxifier, according to a Great Smokies Diagnostic Laboratory detoxification profile test.
It just seemed like everything was progressing with me, although slowly and not without some complications, but mild, compared to how I feel since taking that darn Levaquin. Now I just cannot get back to my baseline level, no matter how hard I try and it seems to have deeply affected my nervous system. Ugh!
I just feel so darn helpless and I don't know what else to do...
-------------------- My Lyme dx:11/05. My Mom's Lyme dx:5/16. ISO ASAP-Lyme Literate Dr & Neurologist-Prefer IL, IN, KY, MO, OH, TN. Can travel farther. Finances limited. Prefer Drs take Medicare or Payments. Need great list to find best fit. Tyvm. Posts: 701 | From Owensboro, KY | Registered: Sep 2005
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posted
Wow, you really have quite a dilemma. Many here helped me find a new LLMD when I felt tx wasn't working or I needed another opinion.
I can't speak to your unique biology or medical situation. But I can tell you that taking any of these abx make you sicker for a while. Every single one you mentioned, except levaquin, which I never took, made me achier, more arthritis-ier, weird moods swings, depression, extremely nauseous -- and basically bedridden for five months.
My solution was to admit that I had a catastrophic illness and organize my life around being catastrophically ill -- no work, no stress, no responsibilities. The herx's knocked me out of commission for a long time, and it was really, really scarey. Still is -- but less so.
My second strategy was meditation, Mindfulness Based Stress Reduction, and only positive diversions.
My third strategy was one I was so reluctant to do, but finally did and was so glad . . . I lined up an arsenal of symptom relievers -- nausea medication, pain medication, antidepressants, and anxiety medication -- and took them sporadically, as needed, if any symptoms from the herx started taking hold of me.
I am still in the midst of treatment, 1.5 years, and follow the same strategies. I am out of a wheelchair, out of bed, basically off pain meds, but still quite sick and coping.
That's my two cents' worth. I hope there is something useful there.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I'm sorry you're having such a tough time.
I would be suspicious of Babesia as well. I have it and LLMD won't let me try Artimisinin, yet. I think it might be too strong for me starting out.
I just finished a 21 day course of Mepron & Azithromycin. I go back 10/5 and I don't know what's next. My treatment is supposed to have less side effects than the Clindamycin & Quinine. You might want to ask LLMD about that. I also think Malarone is supposed to be a little easier than Mepron? I'm not really sure on that one.
OK - I got distracted by my daughter and completely forgot where I was going with this.
Sorry about that.
I hope some of my babble might help. Good Luck & I hope you feel better!
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I did try a small dose, only 25mg, then 50mg, of Artemesinin over a two day period, which caused me to herx horribly. I sweated so bad and could hardly move my head off my pillow for two days, not to mention had horrible depression. Does my reaction somewhat confirm a bad Babesia infection?
My delimma is, first, I feel like I am losing ground treating the lyme. How do I get around that?
Second, I gather that the treatment for Babesia is worse than for lyme. How do you deal with that?
1. Yes, most likely. 2. Some drs rotate the babs meds with the lyme meds, so that neither gets the upper hand. 3. The only way out is through.
I think you are a person who needs to approach every med carefully and cautiously. I would continue to take whatever dosage you can tolerate.
Do not try to take mega doses of anything. I'm so sorry you're suffering so. Just continue to detox, eat healthy, drink plenty of water....eliminate the sugar and carbs, and hopefully you will be much better in a few months.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Yikes! I'm so sorry to hear it's been so hard for you! It sounds likes a nightmare.
I don't know how to characterize my rxn to Levaquin with what you went thru since I don't know the details though it sounds like there might be some similarities. My herx on Levaquin has been far worse then either the Lyme or Babs tx. And I've always been seronegative for Bart!
One of my LLMDs said that if that doc gave Levaquin to a non-Lyme pt and that pt had the rxn I'm having, that doc would immediately suspect Lyme and Bart. The doc was that sure that my sx were a herx.
Two of my LLMDs (the one above included) were ready to pull me of Levaquin due to my rxn/herx: nervous system hyperirritability (Levaquin reduces GABA in the brain), severe depression, insomnia, restless legs. These were all sx I'd had before although magnified many, many times.
Since I'd read that Dr. B said that Levaquin was the only tx for Bart w/ which he hadn't seen a relapse, I really wanted to stick it out. One of my LLMDs fully supported this approach and suggested many meds to help me with the herx: antiseizure meds, sleep meds.
Unfortunately, I've had bad rxns to all the meds which effect brain chemistry. Finally, I decided to consult a LLMD/Psychiatrist to hold my hand through the process of working with meds to get me thru the herx. I also considered working with a local psychopharmacologist but wasn't able to get an apptmt soon enuf. The LLMD/Psych apptmt is Wednesday.
I'm rambling so I'll try to get to your questions. When I felt like I was at a plateau in my tx, I went with the advice of one particular LLMD. This doc really understood that I was plateaued; this doc could see my energy was low. He changed my meds and that got me over the hump. I agree that sometimes seeing another LLMD can be very helpful.
Also, I had to make it a real point to complain big time to my docs. I've made more calls to their offices in the past two months than I had ever before. Finally one LLMD said that they just don't know enuf about the psychiatric component (meds and sx) and that seeing and LLMD/Psych was a good idea.
My tx for Babs was easy compared to Levaquin. There was some depression but on the whole the Mepron/Zith and then Bicillin/Flagyl (yeah, I know Flagyl isn't supposed to be a Babs drug but it worked) was so much easier than the Levaquin. Maybe Babs tx will be easier for you.
If I were in your shoes, I would consult a psychopharmacologist of LLMD/Psychiatrist, if you can get to one. It seems that your brain chemistry is sensitive like mine, and I feel I need the support to make it thru the tx. The LLMD/Psych said that it is the LLMD/Psych's job to help the pt make it thru the tx.
I'm not usually a fan of more meds but I feel strongly that the Levaquin is doing its job (along with the nasty side effects). I posted about nervous system hyperirritability, levaquin, restless legs, insomnia and heard back from a whole lot of people who used various meds I'd never heard of before to cope with the herxes/side effects. (You might want to search for that thread - it was within the last month.)
That's about as coherant as I can be right now. I hope there's something in this reply that's helpful to you. My heart goes out to you.
Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Sorry you feel crappy Jenny,
TuTu is right...a lot of us have been thru this junk on our way to some assemblance of health.
It's tough I know...
Perhaps taking a break from abx for a month and detoxing may help...
I had some bad stuff with levaquin also and the symptoms finally subsided...I don't remember how long it took but probably close to six months.
Hang in there is all I can offer...know that we are here to help....know that we have been thru what you are going thru at present and have made it thru...
You will too......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Jen, My heart goes out to you. This disease is difficult enough, and having medicaiton reactions in addition can be demoralizing.
Before I was diagnosed with lyme, I began having reactions to nearly every pharmaceutical medication I took and most supplements. Cortef which was too give me energy was sedating.Threee doctors could not explain this. Nardil, an antidepressant which is usally sedating and causes hypotension, gave me insomnia and increased my blood pressure.
By the time I was diagnosed with Lyme I knew I could handle most antibiotics, the overall toxicities and side effects.
Fortunately, the doctor who diagnosed me has 20+ yeas experience with kinesology (or muscle testing) and integrative medicine. I left the first appointmenet with a list of thirty or so supplement, herbs, and homeopathics none of which I had a reaction to. In addition to asking if a medication or herb was beneficial, he my body asked if I could tolerate a medication. Many I couldn't for various reasons. This approach has saved me much anguish, as well as time.
There are few doctors who practice in this way, more now thatn two years ago. For me there was no other way so I moved to be closer to this doctor.
Posts: 628 | From the south | Registered: Dec 2005
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