I was dx with Lyme this past August. I have been seeing the ND that dx'ed me since 2002, when I became ill. Have gone through several diagnoses but have been operating with polymyositis, which we treated with doxycyline/minocycline to good effect. The ND suspected Lyme after attending a conference and has been testing all her pts with weird problems that never fully resolve.
I was dxed by the Igenex labs. CD-57 was in the low 40s.
I began with Augmentin 500mg 2x/day and clarithromycin 500mg 2x/day. Flagyl 500mg 2x/day was added around Thanksgiving. I haven't experienced much of a herx that I am aware of, though my mood and general feeling of wellbeing are affected by the flagyl.
Besides these drugs I take high dose vitamin C (about 16-20g a day in divided doses--I've long been a follower of Linus Pauling), 4g of D a day, NAC, bromelian, ALA and CoQ10. I've read the Burascano (sp) guidelines.
Does anyone have any suggestions regarding this regimen? My CD-57 was retested around Christmas; I don't know what it is but the ND says it's good and shows low probability of relapse. Would you add or change anything? My biggest problems are fatigue (which has been a longtime problem) and muscle weakness. I am also trying to get off the trazodone I've been taking for years to sleep, down to 50mg now.
A side question: has anyone ever experienced strange welt-type lesions on their fingers and toes? I started to get these at times when I was first very sick in 2002. I'm getting them again now. They are flat, don't seem to have any fluid, and appear as red areas. I'm just getting them on my toes now, and they're distracting enough to be painful.
Thanks in advance, Derek
Posted by sixgoofykids (Member # 11141) on :
Welcome, Derek, sorry you have the need to be here.
It sounds like you're in good hands.
I usually hear about people using amoxicillin because it can be taken in high doses, so maybe someone else will know about the Augmentin. I was taking 2500 mg 3x daily of the amoxy.
I took clarithromycin and had good results from it.
I'm glad you've been spared the herxes!
I've been taking Neuroreplete for sleep issues and it's worked well. They have a website.
Maybe someone else will be able to answer your other questions.
Posted by David Miller (Member # 21583) on :
Bartonella can produce a variety of rashes, crushing fatigue as well as other neuro effects, and the drugs you're taking aren't very effective against it. Classic bart rashes look like stretch marks, but it also often appears as red postules like acne or measles.
Talk to your ND about a bart species test at clongen or frys, or just trying a more bart effective abx like levaquin, cipro, or rifampin.
Posted by dex3703 (Member # 23930) on :
@sixgoofykids: Thanks for the response. I'm doing ok with sleep as the trazodone goes down, so hopeful that will continue. I'd rather try to sleep on my own, even if it takes a while to relearn how to do that.
@David: I've had a problem with weird lupus-like rashes--pustules and little red welts. I had the butterfly like rash on my face and a lot of junk on my chest 2002-2004; the face was brief, the chest mildly persists, with both having been knocked down by the minocycline. I don't think I've ever had anything like stretch marks.
The Igenex tests I've had are: B. microti (babesia) - negative HME panel (ehrlichiosis) - negative B. henselae (bartonella?) - negative (I also had another cat scratch test some years ago which was also negative) Lyme IgM and IgG western blots - strong positive
When I look at the symptom lists for Bartonella and Babesia in the Burrascano guidelines, a lot of them pop out at me. But the classic Lyme ones fit pretty well too.
I'll ask the ND about these other things and see what happens. Thanks both for the replies. Derek
Posted by 17hens (Member # 23747) on :
Derek,
I'm new to lymenet too and learning like crazy. I've read that you can have Lyme and one or more coinfections and until you get rid of one or two, the others can test negative (like they hybernate until they can have their turn at you). That's why diagnosing based on your symptoms might be necessary.
BTW, I pulled a tick off me and had a bull's eye this past April. I've tested negative for lyme 3x and coinfections 1x.
I believe I had lyme (which I was treated for 2x) and still have Bart (which will require different abx) because my symptoms have not resolved and because my most obvious symptoms are fatigue and muscle weakness which is typical for Bart. I don't have any rashes or stretchmarks, just symptoms.
In the past few days I've realized my daughter, son and husband all have the stretch marks and red postules with no obvious symptoms (although hubby hasn't slept well in years). Weird. And scary.
Also, I take Sam-E for mood and it really helps. A natural alternative to antidepressants. It helps your body absorb Vit. B which is good for the blues, so I take B too.
Reguarding the sleep aids, I personally recommend doing what it takes to get enough sleep. Sleep is so important to the body in any kind of illness and recovery. I don't have huge problems with sleep but when I do, chamomile tea right before bed helps me.
Take care and get well.
Posted by sixgoofykids (Member # 11141) on :
Neuroreplete is not a sleeping medication, it's a supplement of amino acids, etc. to replenish what's been lost due to illness. The amino acids help balance seratonin/dopamine levels. One the levels are back to normal and the cause of the low levels is gone, then the supplementation can be stopped because these nutrients are normally obtained from diet.
When I got better from Lyme, I weaned off my sleep medications, but had trouble going to sleep and staying asleep, but not as much trouble as when I was sick. I found 5HTP helped, so my doctor put me on the neurotransmitters because it's a more balanced source of 5 HTP.
Maybe you won't need this .... we can hope. Posted by sixgoofykids (Member # 11141) on :
Oh, and go by symptoms, testing is unreliable. I had both bartonella and babesia but tested negative for both. I responded to treatment of them, which confirmed my clinical diagnosis.
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