LymeNet Flash: skin burning pain?

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Posted by Nal (Member # 6801) on :

Do any of you get this symptom?? What other bothersome symptoms do you get?

Nancy

Posted by Foggy (Member # 1584) on :

Nancy, did you ever take steroids?

I got this awful pain from taking steroids, even for a few days. I subsequently learned the burning can be a neuropathy Lyme patients describe.

Posted by Nal (Member # 6801) on :

No actually skin burning pain was one of my very first symptoms. I hate it! I still get it from time to time but not as bad as I used to.

Nancy

Posted by Foggy (Member # 1584) on :

http://www.canlyme.com/floridasteroid.html

Posted by lymiecanuck on :

Hi,

I have had this symptom alot. Years ago it was like hypersensitvity and then after awile it was burning and red and would come and go.

It's not nice. I don't know what you can do for it except treatment and it is something that is off/on for me and I can get it when I herx.

Take Care
Lymiecanuck

Posted by Nal (Member # 6801) on :

Thanks. It was weird. When I first started getting symptoms it was strickly peripheral nerves. I didn't have joint pain or anything right off hand. I did have a fever and chills just prior too. I hate the skin pain-thats miserable. I do notice that any time I have been on an antibiotic in the past, it cause my skin to burn so bad I thought I would die! Eventually it would die down though.

Nancy

Posted by Foggy (Member # 1584) on :

The abx were the one thing tht helped this awful pain. Neurontin, Gab, and Amitryp were not helpful.

Posted by timaca (Member # 6911) on :

I don't know if the type of burning pain that you describe is "to the touch" burning, like the guy in the florida/steroid story, or if it is "under the skin" burning...where touch doesn't bother you.

I have the "under the skin" burning nerve pain. I spark too.

I had a steroid shot in my knee before it all started (before I had any symptoms, actually) and I wonder if that didn't awaken the "dormant" lyme in me.

When I had knee surgery, I was given an antibiotic, and my burning pain intensified so much that it would have been fine with me if I had died. Now, I wonder if that wasn't a "herx" reaction to the antibiotic.

I'm going to New York next week to talk with some lyme docs there. I hope to ask them these questions....

Tina

Posted by tickitout (Member # 6982) on :

I have suffered with the burning skin pain for a very long time along with the shock sensations. I have the problems too of extreme sensitivity of anything touching my skin causing unbearable pain. It is among one of the most difficult symptoms I have had to deal with. I am going to try a new therapy, hopefully soon, and pray for relief. My prayers are with all of you who suffer from this.

Posted by BJG (Member # 4723) on :

HI
Nancy,
Sorry to hear about your skin burning.
My skin burns. If it is hypersentive skin or it is PN, Nothing worked,
Whatever it is, it is the worst chronic pain.
warm baths help.
Peace
Belva

I burn all over y body. Cold triggers as well as touch. I have not worn shoe in 3 yrs. Fuuny way to go to work.

------------------

Posted by Nal (Member # 6801) on :

Yeah mine is definately surface skin pain. When it flares, nothing can touch me! I do find that b-1 and b-12 help tremendously though!!!

Nancy

Posted by tickitout (Member # 6982) on :

Just curious if any of you have difficulty finding soft clothing you can tolerate against your skin.

What I do have is embarrassing to put on due to being overly "used" meaning holes. Mostly I wear the clothes inside out to avoid the seams from rubbing on me.

Can any of you feel the slightest texture which triggers severe pain.

I look forward to the warm weather so light clothes can be worn, however, then the slightest breeze hurts. What to do?

I would appreciate any input at all. I do B12 injections and take Bcomplex.

Tina, if you get any answers from the NY drs. can you please post or e-mail me?

Thanks for any info.

Posted by tickitout (Member # 6982) on :

Just curious if any of you have difficulty finding soft clothing you can tolerate against your skin.

What I do have is embarrassing to put on due to being overly "used" meaning holes. Mostly I wear the clothes inside out to avoid the seams from rubbing on me.

Can any of you feel the slightest texture which triggers severe pain.

I look forward to the warm weather so light clothes can be worn, however, then the slightest breeze hurts. What to do?

I would appreciate any input at all. I do B12 injections and take Bcomplex.

Tina, if you get any answers from the NY drs. can you please post or e-mail me?

Thanks for any info.

Posted by tickitout (Member # 6982) on :

Just curious if any of you have difficulty finding soft clothing you can tolerate against your skin.

What I do have is embarrassing to put on due to being overly "used" meaning holes. Mostly I wear the clothes inside out to avoid the seams from rubbing on me.

Can any of you feel the slightest texture which triggers severe pain.

I look forward to the warm weather so light clothes can be worn, however, then the slightest breeze hurts. What to do?

I would appreciate any input at all. I do B12 injections and take Bcomplex.

Tina, if you get any answers from the NY drs. can you please post or e-mail me?

Thanks for any info.

Posted by tickitout (Member # 6982) on :

Just curious if any of you have difficulty finding soft clothing you can tolerate against your skin.

What I do have is embarrassing to put on due to being overly "used" meaning holes. Mostly I wear the clothes inside out to avoid the seams from rubbing on me.

Can any of you feel the slightest texture which triggers severe pain.

I look forward to the warm weather so light clothes can be worn, however, then the slightest breeze hurts. What to do?

I would appreciate any input at all. I do B12 injections and take Bcomplex.

Tina, if you get any answers from the NY drs. can you please post or e-mail me?

Thanks for any info.

Posted by tickitout (Member # 6982) on :

Just curious if any of you have difficulty finding soft clothing you can tolerate against your skin.

What I do have is embarrassing to put on due to being overly "used" meaning holes. Mostly I wear the clothes inside out to avoid the seams from rubbing on me.

Can any of you feel the slightest texture which triggers severe pain.

I look forward to the warm weather so light clothes can be worn, however, then the slightest breeze hurts. What to do?

I would appreciate any input at all. I do B12 injections and take Bcomplex.

Tina, if you get any answers from the NY drs. can you please post or e-mail me?

Thanks for any info.

Posted by tickitout (Member # 6982) on :

Sorry to hear all that experience skin burning pain. It is the most horrible chronic debilatating pain and understand all of you.

Just curious if any of you have difficulty finding soft clothes you can tolerate against your skin. It is a major problem here.

I wear my soft things inside out to avoid the seams from touching me and triggering the severe pain.

I look forward to the warm weather so light clothes can be worn, however, then the slightest breeze on bare skin is horrible.

I would appreciate any input at all to ease the pain and try to deal with this better.

Tina, if you get any answers from the NY drs. could you please post or e-mail me?
I wish you the best of luck in NY.

Thanks for any info. and so sorry to hear all of you suffer with this.

Posted by tickitout (Member # 6982) on :

Hi all..sorry for the multiple postings. I was unaware they went through. Have problems somewhere..guess with my computer.

Posted by klcst (Member # 3427) on :

Nancy-
The burning is called Neuropathy and the sensation varies between numbness, burning, and horrible nerve pain. The right dosage level of Nerontin will help. If you have a LLMD who does not address nutritional deficiencies then all the medicine in the world won't help. A lot of people with Lyme mistakingly think every ache and pain is the Lyme, but in most cases it is vitamin deficiencies from being sick so long and the Lyme taking what it needs to survive.
My Neuropathy is much better since I received B12 shots. Your body can only absorb so much of the oral vitamins. In extreme cases like ours shots are required for better absorption.
Tell your doctor you want to try 1cc of B12 weekly for a few weeks and see how you do.
Lisa

quote:
Originally posted by Nal:
No actually skin burning pain was one of my very first symptoms. I hate it! I still get it from time to time but not as bad as I used to.
Nancy

Posted by timaca (Member # 6911) on :

Regarding the B12 issues.....

There is a lot of info about B12 on www.braintalk.org. Go to the peripheral neuropathy section. I think you'll find info on B12 in the "useful websites" section at the top of the forum.

If not, post a question, and Rose will answer it.

She has found that oral methylcobalamin is absorbed very well.

My B12 levels are fine...always been above 600; and my homocysteine and MMA levels are normal, so B12 doesn't seem to be an issue for me.

Tina

Posted by Nal (Member # 6801) on :

I do take methyl b-12 injections and believe me they do help a whole lot!! The skin pain has gone down a lot as well but it does flare a little from time to time. I was just wondering if anyone else had this problem. My dr told me that even though my b-12 levels are fine, the extra b 12 will not hurt anything and it can help ease nerve pain.

Nancy

Posted by timaca (Member # 6911) on :

That is good that the B12 is helping your nerve pain. You might be able to switch to the oral kind described by Rose at Braintalk...it might be cheaper (and less painful) for you.

You are correct that taking B12, should not hurt someone who has normal serum levels.

Sounds like you have a good doctor! Where in Colorado do you live? I'm in AZ...

Tina

Posted by Areneli (Member # 6740) on :

I have this symptom myself and have researched the issue. This kind of pain in my opinion has its source not in peripheral nervous system as some of you suggest but in thalamus that is part of the brain that is very tasty for Bb.

In fact the pain you described is most likely Dejerine Roussy syndrome except that ducks cannot make the connection between Lyme and this painful condition. I am quite sure that if you test people with Dejerine Roussy for Lyme many, if not all would come up positive.

I don't know if any of you got through any intensive Flagyl treatment. Taking this drug will make your pain even worse as more toxins will be released on these very sensitive sensory centers but eventually you will get better.

I do what I preach. I did get somehow better, but yeasts attack had slowed me down with treatment. B12 probably wouldn't hurt but the most important thing is to remove the cysts from thalamus. This will cause A LOT OF PAIN, but there is a light at the end of the tunnel.

Don't loose you hope

Dejerine Roussy syndrome is treated not with painkillers but rather with antidepressants, if you want to try symptomatic relief. These may screw up your vision, and that is why I stay away from them as much as I can. But who knows, maybe you will get lucky and your vision will stay OK.

[This message has been edited by Areneli (edited 23 March 2005).]

Posted by twicebitten (Member # 5412) on :

I have alot of nerve pain and did take flagyl for an extended amount of time (4months) along with rocephin..it was very painful and I think, I know, the flagyl was worse on me than the rocephin by far; although I was never sure why, or my doc at the time either. He was thinking I was just sensitive to it..I'm interested in what you are saying though..as I have since found out that I can not absorb b-12 through my stomach due to a raised level of parietal cell antibodies...so it damaged my lower cord and my peripheral nerves were dying due to not having b-12..I thought it was the lyme the whole time, which it was aggravating the problem..another doc thought it was MS and was giving me some copaxone..but that was ruled out by 2nd opinion..I'm interested to see how much of this was the b-12, but NOW, the lyme is acting up again b/c I'm on the b-12 shots and am having more symptoms so it has to be the lyme now..
Melinda

Posted by tickitout (Member # 6982) on :

hi,
Areneli, I am very curious abuot your posting.

I need to understand and remember somewhere reading that certain antibiotics cause LB to go into cysts form.

Having neuro. problems as main syptoms I wonder if possibly there could be cysts in the thalamus.

I never heard of Dejerine Roussy syndrome before.

Also is flagyl the only antibiotic that will kill these off?

I suffer horribly from this daily and really can't deal with it much longer. I need to do something.

I remember a dr. telling me he wouldn't put me on flagyl because it would kill me..don't know how he meant that though.

Interesting post..thanks

Posted by Areneli (Member # 6740) on :

You may use plaquenil or tinidazol as they are little easier and perhaps do about the same.

Still you will suffer, I promise. But perhaps it will be worthy.

Best wishes on you road to painless life.

I don't know if any LLMD makes this connection. I have come up with it on my own. I will bet $1000 that I am right here.

[This message has been edited by Areneli (edited 23 March 2005).]

Posted by lymeHerx001 (Member # 6215) on :

Ive been taking Flagyl for over a week now.
The itching went away. My energy improved but as soon as I started pro-biotics I got diarrhea.

I dont think it was the flagyl, just the pro-biotics as others have described.

I got up to 5 flagyls a day 250mg each.
No major herxes just minor pains,, but some depression out of nowhere. I belive this is a neuro herx.

Arneli do you still believe that the cysts are active if they are living? Your theory about the brain cysts makes sense if this is true.

Posted by tickitout (Member # 6982) on :

Hi
I will contact my dr and ask about this. I know I have been on plaqunil before however don't remember tinidazol at all.

As far as suffering the pain is unbearable everyday.

I can't recalla painfree day for a very long time.

A $1000 bet sounds great to me.
Thanks for the advice. Sounds like it is definitly worth a try.

Posted by burnbitter (Member # 7088) on :

quote:
Originally posted by klcst:
Nancy-
The right dosage level of Nerontin will help. ...
My Neuropathy is much better since I received B12 shots. Your body can only absorb so much of the oral vitamins. In extreme cases like ours shots are required for better absorption.
Tell your doctor you want to try 1cc of B12 weekly for a few weeks and see how you do.
Lisa

Hi,
I tried neurontin. It made me suicidal. Along with a host of other side effects, dizziness, vertigo, stupidity... I increased dosage up to about 1600mg/day trying to get relief but it didn't help. Nor did similar drugs.
If you take it be very careful. The suicidal thing can sneak up on you. I'm not normally like that but when you've been feeling bad for a long time it seems "normal" to be suicidal. But once I stopped, then took it again later on it was pretty clear it was the drug not me.

B12 shots though I found helped a lot. A blood test before and after shots is good so you know if they helped or not. Iron and vit. D might also be helpful.
Also as my treatment for lyme progresses (2 months now) it seems like the frequency I have the neuropathy is decreasing. Though it's still just as awful when it does happen.

Posted by ibrakeforticks (Member # 6785) on :

Areneli,
Do you know what kind of anti-depressants help with the skin pain? Tri-cyclics or SSRI's, or the newer ones like Effexor or Cymbalta?

Posted by ibrakeforticks (Member # 6785) on :

For people with the skin hypersensitivity/pain, do you have heat or cold intolerance as well?

Posted by burnbitter (Member # 7088) on :

quote:
Originally posted by ibrakeforticks:
For people with the skin hypersensitivity/pain, do you have heat or cold intolerance as well?

Cold makes my muscles cramp up. I lived in montana for a couple years and the climate there (cold and dry) really aggrevated my symptoms.
hot baths are great! my normal body temp is pretty low 97.1 so anytime I'm warmed up, I feel better and can sleep better.

Posted by Areneli (Member # 6740) on :

You don't event have to go to LLMD for an antidepressant. Any family physician will do.

I don't have much experience in differences between antidepressants but I am sure that your family physician will have a lot of experience in it.

Give yourself a few weeks before you make your judgments. Antidepressants take time before they work... and let us know what happens.

Posted by Areneli (Member # 6740) on :

"Arneli do you still believe that the cysts are active if they are living?"

I don't understand what you are asking. Please explain.

Posted by BJG (Member # 4723) on :

Hi
I was on 3200 mg of Nuerotin, it had no affect on the pain.

Cymbalta is the new SSRI that has the potential to decrease nerve pain.

I take Amytriptoline at bedtime.
At a low dose it can reduce nerve pain. At a high dose it is used for depression.

My LLMD believes the pain is from nuerotoxins, so it is important to detox your body.

Cold makes the burning worse.
I take MANY warm baths with Epson salts and HP.

It is difficult to find soft clothes and clothes with no tags.
Everything burns my body.
Sheets, socks, clothes, touch etc.
WHAT A PAIN!!!!!!!!!!

I have read where too much B12 can actaully cause burning. Is that true??

Flagyl increased the pain for me.
The only FOR SURE thing I have ever taken, which includes MANY suppliments and antibiotics is Rifampin. My LLMD uses it for my mainstay med.

Is burning a Bart symptom??

THanks
Good luck
BJG

Posted by tickitout (Member # 6982) on :

quote:
Originally posted by BJG:
Hi
It is difficult to find soft clothes and clothes with no tags.
Everything burns my body.
Sheets, socks, clothes, touch etc.
WHAT A PAIN!!!!!!!!!!
Hi BJG
This is a major problem for me also. I cut all the tags out.
I find many clothes people have purchased for me have plastic in the seams, don't know why. If the material is soft and able to tolerate wear them inside out.
Start a new fashion trend as per my kids.
I would love to wear a pair of Jeans again.
This really is a serious problem which is difficult to understand if you don't have it
And yes the cold does make everything worse.
Just wondering is tightening of the muscles part of this too.
It feels like the muscles in my neck are chocking me and continues through the rest of my body and face.
It is really scary.
A dr told me it was a combination of muscle spasms and nerve damage.
Never been tested for Bart.
Thanks

Is burning a Bart symptom??
THanks
Good luck
BJG

Posted by lymeHerx001 (Member # 6215) on :

Im asking in your opinion whether or not the cysts cause disturbences in our body/brain metabolic funtion and in the blood flow and glucose usage in the brain.

quote:
Originally posted by Areneli:
"Arneli do you still believe that the cysts are active if they are living?"
I don't understand what you are asking. Please explain.

Posted by BJG (Member # 4723) on :

Hi ALL,

Nancy and Foggy, What antibiotics are you taking?

Is the burning skin from Bart or Babs?

I keep getting mixed messages in my research. It sounds like BArt, but Bart causes headaches. I do not have headaches.
My skin burning is accompanied with twitching and the sense that my body is an electrical circuit gone haywire.

The twitching and electrical stuff has been helped with Magnesium. {thank you Marnie}

Do you all have the twitching also?

Tickitout, you are welcome to email me, as any of you are. Maybe we could all email one another.

I wish all of us that burn, could connect somehow and help one another out.

Although we know this is Lyme, the burning is not the most common symtom.

Thanks
[email protected]
BJG

Posted by twicebitten (Member # 5412) on :

for those of you asking about clothing without tags, fruit of the loom makes some undergarments like underwear for men and women and T-shirts without tags, just printing for the back..it's great, 100% cotton stuff. NO tags.
the T-shirts come in all colors.
I have several, last year when my symptoms were in full force I wore them lots and the underwear come in the kind with short legs in them so as not to cut into your legs, not just mens either, in womens 100 % soft cotton, look for them, Fruit of Loom. no tags, great stuff.. FYI.
Melinda

Posted by twicebitten (Member # 5412) on :

one more thing, the burning, painful neuropathy in the feet and legs, I used to and sometimes still get the support stocking to wear if I have to stand for long periods and the pain is very bad.
The diabetic stockings or the ones they use to prevent blood clots.
I have socks (regular cotton sport socks) like those too with the extra support. You can order online from health places or find in drugstores sometimes.
The extra support or pressure would help sometimes. I don't know why.
I know what you guys mean about the cold and extra pain and sometimes my feet will not warm up no matter what I do and I will have to get in hot bath, the hotter the better.
The epsom salt someone mentioned helps me too, although can be drying to the skin so I put in some bath oil or something to help that. The salt tends to ease the joints some. I like the "Bath Therapy" stuff too you can find at walmart too.
FYI
Melinda

Posted by Nal (Member # 6801) on :

I do not currently take any antibiotics at all. Also, I have never heard that too much b-12 can cause burning. According to one of me dr's the b 12 will act as a pain reliever to the body. The form she recommends is methyl b-12 injection form. Shes says the extra is excreted out the body so it can't cause damage. All I know is that it really, really helps me!!!!!

I definately notice that my skin is much, much more sensitive when the weather is cold! The burning pain is down a lot but before the b-12 it would get really, really bad. Wearing clothes?? What a nightmare! Laying down in bed-awful!!

I really haven't found too many drugs that can be helpful for this but thats because I have terrible reactions to nearly every anti deppresant out there. 1 that works for some may not work for others.

I have been told that applying pure peppermint oil to the skin (you can add it to your lotion) can help some. The drug stores carry a lotion--I think its called Sorgan lotion (sorry if I misspelled it) and it does help some too.

Nancy

Posted by Areneli (Member # 6740) on :

Right, it is toxin leaking from cysts

Posted by tickitout (Member # 6982) on :

quote:
Originally posted by Areneli:
Right, it is toxin leaking from cysts

Hi, I am so confused about the cysts form and if they cause many problems I have.

Also what the best antibiotic is to erradicate them. Can you please send me a link with this info. so I can try to understand it?

Thanks so much to all for any response.