Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
My hands are painful and burning, so are my soles.
These symptoms are some of my initial symptoms. While other symptoms are resolved or reduced greatly, these symptoms are untouched or worsen after Bart. treatment, and become almost unbearable.
Recently, every typing hurts my finger tips.
Before I thought these symptoms were from Bart.
However, with Bart. treatment (Rifampin+Mino), these sx have been worsened, and now it's become the biggest problem.
When I on Lyme treatment(doxy, Tini,Ketek), these sx were minors.
I remember Levaquin is rather effective on these sx.
I would like to know what coinfections are responsible for these sx? and what's the effective abx and herb treatment?
I am really at my wit's end. Any input will be greatly appreciated.
posted
BJG...I noticed that you were burning as far back as 2004. I hope you're taking pain meds, it is not healthy to be in pain all the time. I can't imagine having the leg burning pain that I have all over my body.
I think these burning pains aren't all created equal. For example mine is excerbated by activity and moves around my lower legs. It is also accompanied by stiffness. It is not affected by touch like some other posts I have read.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Dave,
I get burning hands sometimes, at night, and more often get other skin symptoms -- prickly, pin-prick burning sensations on legs and other areas.
I do not know much about peripheral neuropathy and what treatments are used to treat this. Since I have had such pressing neuro problems, I have focused on addressing those and not tried to address this set of symptoms yet. (And assumed if I addressed the neuro problems, everything else would hopefully get fixed too!).
I did ask my doc recently about IVIG treatment, since Dr. Fallon had mentioned it at the opening of the Columbia Lyme Center as a potentially promising treatment. His response was that this was used for peripheral neuropathy.
So maybe this is something to look into?
You are not alone! My facial numbness has improved over the last year, with high dose amoxy,
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I had burning sensations for years and they are GONE GONE GONE!!!
For me they were Babs & Bart meds that took them away- those burning feet & burning spots!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
This was a recent topic/video provided by Scott that might be helpful. I don't think Dr. S discusses burning, but he does discuss biotoxins in general.
posted
You are not alone-The burning I have is on my scalp and all over my neck,my shoulders,my feet ,hands and other places. It doesn't stop and is enough to make someone crazy. So far,Ketek was the only drug that seemd to lessen it somehow but I couldn't tolerate it beyond six weeks. I believe metals are involved and about to take the heavy metal challenge test with DMSA-not looking forward to it but need to know if I am over the limit. Also just got a prescription for Lyrica but haven't taken it yet. I saw one doctor in PA that believes neurotoxins are responsible but then it makes no sense to me that certain antibiotics decrease the burning since they don't affect neurotoxins. I believe it is active infection that causes this. If you find relief with anything please let me know.
Posts: 425 | From NY, United States | Registered: Mar 2005
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posted
Dave6002 says in a previous post 2 months ago: "I started rifing two months ago and now also pulsing MWF Rifampin plus Mino. I feel I am improving on this regimen. Pulsing giving me more time to use probiotics and detox to restore the gut flora. For Bbs, rifing only may be enough, cause they grow very slow. I may have Bart. which grow quicker and may need abx to eliminate them. and the abx combo seems working, so I'll stick to this regimen for a while. I have been doing rifing extensively, almost every other day."
You have only gone downhill since reducing abx and going with Rifing. Rifing doesn't work. I've used one of the best machines, and it will NOT, Does Not get rid of Lyme and coinfections. Some people claim that it does work, but these folks have been on heavy abx protocols for years prior to Rifing. They have reduced their infections down far enough with abx so that they actually do feel better for a while, but really all they have done is bought themselves some time.
The other problem is that you are pulsing Rifampin. This is a big no no. You need to read the Bartonella Buddies thread all the way through. The drug should not be pulsed or stopped and started repeatedly. As a matter of fact, pathogens develope resistance to it rather easily, even when used properly....it happened to me. So it's most likely a useless drug for you now against Bart.
Now if Rifing did work, you would not be going downhill, especially since you have also added at least some medication
A negative test for Babs or Bart with the standard tests doesn't mean that you don't have them, and neither are short trials of abx conclusive for ruling them out as coinfections. I suggest that you get the blood smear test from Dr F in AZ. It's the best test. Bartonella Buddies Thread
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Thanks everybody for your input.
It seems you guys know better than me about my current situation; I was really at my wit's end, don't know what cause this problem.
Today I was thinking virus involvement and viral meds might be my next straw.
I got some relief by your reassuring that I am not alone.
Truly, burning probably is one of most common symptoms among lymies.
In my sickest days, the burning of the whole body really drove me nuts; I would prefer to sleep in a freezer or jump out of my skin, or use a powerful fan to cool down.
I could not wear gloves or socks one minute.
With lyme treatment, thank god, the unbearable burning's gone within a couple of months.
Then I thought the residual symptoms would be gone soon with treatment.
However, after one year and a half of treatment, it didn't improve, rather recently worsened.
At beginning, I attributed it to Rifing herx.
Now it obvious it's not the case.
...
Cannot type more now because the fingers hurt a lot.
I'll continue after awhile.
Dave
Posts: 1078 | From Fairland | Registered: Apr 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Have you ever tried hitting all your TBD's at the same time?
Personally, I improved the most when I treated my bart, lyme and babs together.
I also added glutathine and B-12 shots.
Feel better.
Posts: 1603 | From ny | Registered: Aug 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Yes, I have.
I have been on Rifampin and Mino, which should cover Lyme and Bart., and I don't have babs.(didn't response to Mepron/Zith/Arte treatment).
This combo only keep Bart at bay.
Once I stopped the meds, within three days, Bart symptoms would come back.
Posts: 1078 | From Fairland | Registered: Apr 2006
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
Thanks guys for your opinions, experience and encouraging.
With your help, I hope I'll figure out what's wrong soon.
BJG, I have been on and off Chlorella for a while, didn't have any major response.
Because you responded within a few minutes to Chlorella, seems to me it's an allergic reaction.
Chamade, you are right at that burning pains are different. I still need to find one who has similar pattern of burning pains to me.
Vermont, you are absolutely right. Now I tend to think that all lymes and coinfections are diseases of neurosystem. The pathogens are mainly attacking neurons and neurofibers, at different places for different people, causing arrays of different symptoms. BTW, what's the IVIG?
Sarah, your stories are always encouraging.
Claire, thanks for bringing this video up to my attention. I'll look into bitoxins in more details.
Amkdiaries, I agree that the burning sysmptom is caused by active infections and neurotoxins are byproducts of these infections. With effective treatment, once the pathogens are eliminated, the neurobiotoxins will be removed by the body.
Micul,my expectations always fail me when com to lyme problems and I now really understand how complicate and difficult this disease is, and single modality may never work. Rifing is not as effective as I expected. However, at this stage, I am not ready to give up rifing. I feel it's working, though not completely sure. Thanks for pointing out the pulsing and resistance problem. If this concept is true that if you cannot kill pathogens in a short time, they'll develop resistance to the treatment, the resistance problem may be one of biggest problems we are facing. I agree that I may have resistance problem because seems I am plateaued at the current treatment or going downhill. However, I read about Babs and Arte, saying that Babs can temporally develop resistance to Arte, however, once stopping taking for a while, they will become sensitive to the treatment... got to go.
Dave
Posts: 1078 | From Fairland | Registered: Apr 2006
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