Nal
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posted
how many of you have/had skin burning pain that was directly related to Lyme or a co-infection? Its so frustrating for me because my skin (when it flares) just burns from head to toe! It was actually one of the first symptoms I had with Lyme (tingling arms and legs first and then my skin started burning, and then the joints, muscle pain, etc-like a cascading effect). I just want to know I am not alone with this symptom! Will it get better with treatment? Im on a candida diet but I don't know if yeast is causing it-I really think it could be the Lyme or Bart? Who else has experience with this? Does your skin flare when you herx too?? My LLMD has me backing off the zithromax again for a few days. Geez.
posted
Wrote this on general support: "Yes, only when I have herxed on IV rocephin. It was EXTREMELY helpful to take long hot epson salts baths and add hydrogen peroxide to the bath about ten minutes in. Also peroxide to bare skin helpful when I couldnt make it into bath. It opens the pours and draws out the toxins. 2 cups of epson salts and 1 bottle of peroxide to each bath."
posted
Since the search function doesn't work, here's a link to this topic from a few days back. I think it's been discussed again since then too, but I'm not sure. Yes, it's a horrible symptom and no you're not alone.
Since it's your whole body I would guess the problem is Lyme or neurotoxins in the brain, and not in the actual sensory nerve fibers in the skin. I've heard cholestyramine and/or methylcobalamin B12 help some people with this. http://flash.lymenet.org/ubb/Forum1/HTML/033716.html
breathwork
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posted
I was just chatting with Dr. S about this today....I've had the burning in my legs...feels like my legs, or more specifically, my skin has a high fever...He said it's neurological...can't say whether it's a herx or a lyme neuro symptom...
Posts: 1062 | From CA USA | Registered: Jan 2001
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Nal
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posted
Wow, thanks for the link-and support!! I hate this symptom because its not like you can walk around without clothes on so you have to deal with it.
Areneli
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posted
I agree that this is the most terrible symptoms of Lyme disease that there is.
Still bothers me to some extent, but less than in the past. It fluctuates a little bit during a day so I get some rest. I hope it will eventually disappear once my nerve system heals itself.
Treatment with Tinidazol helped quite a bit in my case, but initially it made me much worse for several weeks. I was bedridden for a while and it made me suffer so much that I was begging my doctor for euthanasia.
You have to get through it somehow without killing yourself.
I belief that this symptoms is caused by presence of cysts in thalamus - our brain sensory center and that is why I expect cyst busters to be the proper, although not easy, treatment. Later you will need patience and food facilitating brain regeneration.
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posted
"You have to get through it somehow without killing yourself." Areneli, you have a way with words. How do you heal the brain? Have you looked into Patricia Kane's work with fatty acids? Is that the type of regeneration from food you're talking about?
I've found taking GABA (2-3 grams a day), with B-complex can help reduce it a bit.
I'm thinking of trying the dry brush skin massaging that's discussed in that book on sensory defensiveness. It sounds bad, but the theory is it helps desensitize the nerves for a few hours. Rubbing the skin can help too, if it's not too painful.
Areneli
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posted
ibrakeforticks, the treatment is tough but it is a mistake to give up because of increase of the symptom . Nal has to be prepared for serious trouble but there is a light at the end of the tunnel.
Brain food? I meant vitamins, minerals, fish oil, some fish in the diet.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
You mean GABA as in gabapentin?? That's a good idea. Nancy, can you ask your dr for some neurontin or GABA? It should help! You have to build up your dosage and give it time, though.
Foggy
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posted
Buring skin improved with abx and Mepron over time. Neurontin & Gabentin didn't help at all. Pain killers were marginally helpful.
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Areneli
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Antidepressants will help - but you have already been there and didn't like side effects.
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Nal
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posted
you guys are so great!! I have been taking an increased dose of methyl b-12 injections the last few days (yep, under dr's supervision). Things are calming down again. For some reason I get on antibiotics and thats the first Lyme symptoms that will flare up big time!!!!! Usually a couple days later I get the joint, muscle, etc pain.
The problem I have is that once I start a bad herx, I want to get off the antibiotics right away-scared Im having a reaction or that the meds aren't working, etc. I know meds have side effects but I really need to stick to following my dr's advice and truly give them a try.
If a herx means I will eventually get to feeling better, then I will take it!!! However I can't herx so bad that I can't take care of my 3 young ones and such. Thats why my dr has really backed off quite a bit with the meds and I am taking it VERY SLOWLY right now!
posted
Just so you know you ARE NOT ALONE. My burning was my second Lyme symptom, and THE WORST. Too bad it is one of the things I have been unable to get rid of yet...(after 2+ years of it..sigh)- however at times it does get better.
I have thought my central nervous system is being inflamed (vs. in the brain) because my symptoms are completely symmetrical (both my arms & legs burn in the lower extremities- same place exactly). And dang if it doesn't HURT LIKE ALL GET OUT...It is indeed horrible. It is unexplainable how much it hurts unless you have suffered yourself. And the way it goes on & on...just awful...
I pray we all recover (sooner rather than later, but later rather than not) :}.
-Sarah (in Lymecentral Maryland)
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Posts: 58 | From Leonardtown, Md, usa | Registered: May 2003
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posted
I have the Burning issues way before being treated. All of the muscels in my chest would get it, and then it moved into my arms. My accupuncurist saved my life a number of times on this. 20 min into treatments and it would melt away. Really. I don;t know wht I would have done without it
Posts: 582 | From milwaukee wi | Registered: May 2005
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Areneli
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posted
My skin was in such a pain before that I spent weeks in bed. It was all caused by 250 mg/day of Tini.
Today I take 2.2 g of Tini per day and have only tiny little herxy.
[This message has been edited by Areneli (edited 28 May 2005).]
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Nal
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posted
I meant GABA the amino acid, not gabapentin/neurontin, the drug. In theory GABA is safe (get pharmaceutical grade) and doesn't have the side effects neurontin does. Yes, neurontin helps the burning pain for some people, but it is a toxic drug.
You can also try the amino acid tryptophan, which helps boost serotonin, which may help reduce pain.
posted
I used to have burning skin pain on the left side of my face and it would drive me crazy!!
This symptom cleared up after 5 years. I don't know what caused it to go away, but I'm very thankful that it did!!
During the winter, when I would go outside, in addition to the burning on one side of my face, one side was actually colder than the other.
kathie
Posts: 3 | From fort myers beach, florida | Registered: May 2005
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Nal
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posted
Well mine flares as soon as I take my meds-ok within a few hours or even a day or two. When my skin burns, its head to toe!! I have to believe its a herx reaction. It was one of the first symptoms I ever had and its the first to flare every time.
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