posted
I know people have talked about this burning skin sensation in the past but I was just wondering if anyone out there currently has this as a symptom? Do you have it all over or just in select places? Also, is it there constantly or does it come and go? And finally, what do you take (if anything) to try to alleviate the symptoms especially since clothes really make it feel worse?
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I get it. Less with treatment, but still get it. Most common on lower extremeties, though also in one arm and sometimes on my face/neck. Just part of the neuro lyme symptoms.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
i get it today it was on the tops of my feet...only lasted a lil while. Other times it has been on the side of my face and ear. For me it is one of my minor symptoms.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
posted
I would highly suspect bartonella. My Doc told me burning skin is a bartonella symptom.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
My burning covered all my body but it was particullary annoying and painful on legs. Symptom of burning had started distally and progressed centraly.
During long recovery I have started improving from central parts of my body and the last burning symptoms were present on feet and hands. I still have some residue of burning symptoms and a patch o burning skin on my neck.
I have improved after typical Lyme treatment and didn't used treatments for any coinfections bartonella included.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
Both my children suffer from the burning sensations. My son gets it on his face and ears, and my daughter gets it on her feet. Both have tested negative for Bartonella. They both finally got to symptom free for a whole year after a year of Lyme and co-infection treatments. With my relapse this past year they have become symptomatic again, with the burning episodes, too. With all the stress around the house they were bound to relapse. Now they are back on their meds.
Posts: 134 | Registered: Dec 2002
| IP: Logged |
posted
The skin is very sensitive while this is going on so anything up against it will irritate you.
There does not seem to be a pattern as to when these episodes happen.
You have to treat the Lyme for this and my kids were on 100mgDoxy, twice a day, and 500 Biaxin, twice a day. It was almost a year before they began to feel relief. You have to have a great amount of patience in treating Lyme. My doc, who treats my kids, says 18 months is the turn around period before you feel good most of the time, fortunately it took less time for my kids. Also, all throughout this they took mega supplements to build the immune system up. The doc kept doing blood tests to monitor any deficiencies of changes in vitamin and minerals.
Please don't allow a doc to change your meds all the time because they don't work. I know more people suffering for years on end because they and their docs did not have the patience to stick it through. My doc has helped thousands of people over the years. If you are interested in more info about his protocol email me at [email protected].
Take care-Lisa
PS-I take 500mg Levaquin in AM with breakfast. It has been very effective for me.
Posts: 134 | Registered: Dec 2002
| IP: Logged |
posted
i have asked this question as well, i get this red patch more often on my left cheek bone it and then my face feels really warm,
i ask people to touch my face and they think i am burning up, i dont have a fever most of the time but sometimes it comes with a low grade temp.
The wierd thing is that it seems to not be there so much at night when i am relaxing. and it takes about an hour before it kicks in, in the morning. i cant understand it. some people have pointed to babs as a coinfection or bart. but i have tested neg on both twice now through smear and blood work not that, that means anything.
i hear people say this is not one of there bigger symptoms but for me it is, i cant figure it out and niether can the ducks. i also have a swollen lymph under my left jaw bone that seems to flair up when i feel the hottest.
somepeople say its the doxy because some are more sensitive to it than others and some say it is the disease in my face, some people say it is an underlying yeast problem, i get all kinds of responses. i even went to the dentist thinking i had a tooth problem or something, nothing.
the strangest thing and i will end with this is that it can be hot as heck, and then the next minute it is cool or calm as if it were turned off by a switch, i notice that a hot shower or a hot tub make this better which i also dont know why. anyone have any ideas.
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
At the time my skin was irritated by clothing a lot. I felt a relief when I was naked or just in shorts. That was how I survived most days.
It was better when I didn't move as there was less friction on my skin so spending time in bed helped.
Some people say that is worthy to wear the smoothest fabrics you can find and wear your cloth inside out as clothing is usually smother from outside.
I have heard that antiepileptic drugs (such as Carbamazepine) may help for burning skin symptom but I have never used them.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
Feels like a terrible sunburn. Rough clothes are painful. Sometimes feels like water on my thighs.
In pain terms I think it's called hyperaesthesia, or allodynia. People with Reflex Sympathetic Dystrophy or Central/Thalamic pain can get this to a severe degree.
Do a search, some people have improved this symptom. I can't imagine how, but I've just started on the abx road, so I hold out hope. I think the problem is in the brain, so blood-brain-barrier penetrating abx would seem to be a better bet. It's a horrible symptom. Good luck.
Posts: 204 | Registered: Jan 2005
| IP: Logged |
posted
Maybe it's because I am a newer "member" of the lyme club but I sometimes wonder if this skin sensation/burning issue is somehow a different problem and not related to lyme? It's just that there seems to be only a few of you that have this as an ongoing issue whereas for me it's more of a main issue.
I guess I just want to get over these symptoms as soon as possible...
--David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Oh man, I have this!!!! When it really flares up, i get it all over my body too!!! Its awful, Iknow. I wish I knew what helped it, but I don't. Taking Epsom baths does help some. This is a faily common symptom, so no I don't think you have a different problem going out, but it never hurts to check with your dr.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
| IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
It's cold but my face is red and burning. My arms are burning and feel tender.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
posted
I also suffer terribly from the burning sensation, more than a sensation. The pain in my arm,leg and face is excrutiating...it can be terrible one moment and a dull ache the next. I have it everyday from the moment I wake up until the moment I fall asleep. I take vicodin for the pain and it hardly touches it. I haven't had any luck with any other pain reliever. Allergies to others have left me with only the vicodin. I am being treated by an LLMD about 5 wks but have been ill for atleast 5-15 years. Will it ever stop? Sometimes it feels so hopeless, the vicodin only helps for a short time and then it is back in varying degrees. Thanks for reading. Feel well
Posts: 4 | From Lords Valley, Pa USA | Registered: Aug 2005
| IP: Logged |
posted
The burning skin sensation for me is definately a primary symptom and I have it 24 hours a day, 7 days a week. It started about 6 months ago and has not diminished in it's severity.
The only part of my body affected is the stomach area and boy is it annoying! Clothes, buttons, zippers, etc. The skin is hypersensitive and anything that touches it 'burns'.
One of my docs along the way (can't remember which one- maybe a rhuematologist?) told me it was something called allodynia. I have no idea what that means and when I asked if it could be a symptom of neuro lyme, she didn't seem to have the time of day for me and thought I was nuts.
I sometimes take zanaflex to help with my joint stiffness which seems to help the burning, too.
Posts: 21 | From Connecticut | Registered: Nov 2005
| IP: Logged |
posted
David, your symptoms sound very similar to mine. I get the burning in different areas. I get it on my scalp a lot. I do feel it when I go to bed almost every night. I even get it in my eyes.
I had a patch of it on my left hand for a few days, then my scalp and ears, my big toe, right knee.
I think it's inflamed nerves.
Posts: 340 | From Ohio | Registered: Oct 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
My 'burning skin' is definitely going away with ABX treatment.
There is a hope for all of you.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
I think I get it...I'm not alone with this problem! Sorry you all have this symptom because it is really quite irritating. I mainly get it on my legs..particularly the backside and sometimes sitting is just so uncomfortable. I've had it pretty much constant for several weeks. What's strange, however, is that there was a few days where I didn't have the burning feeling but instead had knee stiffness....it was like my body telling me I always have to have at least one symptom!
Anyway, I guess for me it's the psychological aspect of dealing with the skin sensation that's hard sometimes because it wears me down. I am hopeful that at some point it gets resolved as I hope for all of you it does as well. Any advice on you deal with it during the day?
Thanks for all the msgs. What a great website!
David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
Lydie
Unregistered
posted
This is my primary symptom, and typical of neuro Lyme. I have actually had a skin biopsy, which showed autoimmune activity in the skin.
MD's have suggested either Neurontin or amitryptilene (Elavil), both of which can help neuro pain.
IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I have had this for about a month or a month and a half now, it comes on every evening. It affects my neck and chest, face, and ears. My skin feels sunburned and looks red and blotchy. I have tried aloe vera creams, but the only thing that helps is applying something cold to the area (my cold hands, usually!) It is kind of embarrassing because it looks like I am blushing. It always comes on in the evening and at night I can feel it in bed, but also comes on if I feel stressed AT ALL. My PCP has no idea what it is, another doc says it is my body's way of showing physiological stress from the Lyme Disease. It is a relief however to hear others have this. It is quite uncomfortable, getting worse for me, and not something I had much of in the beginning. I feel like I am burning up with fever when it happens, but thermometer shows normal temp.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
My primary symptom is skin burning. Second is twitching.
I burn everywhere. Legs, feet, butt are the worse, although at any given time it moves, switches and changes.
I am very aware of what I wear. I wear all clothing loose and do my best to use soft fabric.
Sheets even hurt my feet.
After my body is lying at rest, the symptoms reduce.
I take LOTSSSS of epson salt baths. Warm water is my skin salvation. Can't be too hot, increases burning.
I also use foot pads-gold.
I was on 3600 mg of Nuerotin-it did not touch the pain.
Mine started in the left middle finger and moved quickly thru-out the body. It combined with severe electrical shooting thru-out my body. At that time I was calling for the Lord to take me.
As far as what has helped-don't know. I have been on many ABX.
I am now Rifing. IS it helping?
DOn't know, but for sure I am having severe herxing. I am choosing to believe that the critters are being killed due to the haed pressure. I do not have head issues when I am not herxing.
Hope this helps. You are welcome to email me.
Peace, BJG
Posts: 468 | From IL | Registered: Oct 2003
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I also have burning nerves. Everywhere. The scalp is quite painful. It is a primary symptom for me, being that I have it 24/7. However, I can sleep, so for that I am grateful.
I recently had a skin biopsy, so it will be interesting to see what that shows. My EMG is within the normal range, and has not gotten worse from the first one 2 years ago when my symptoms started.
My skin is not painful to touch. I just have nerves that burn, spark, creep and crawl all over my body.
Many of my other symptoms are going away with treatment. I am hoping that the nerves will heal too. It's nice to hear that for some of you that has happened.
Any of you take special supplements for your nerves?
Blessings....
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
BJG- Where do you experience the muscle twitching? Is it 24/7?
Timaca- What are they trying to determine with a skin biopsy? Does the dr. feel that it is something other than lyme (or co-infection) causing the problem or does the skin-biopsy help show that it is from lyme?
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
| IP: Logged |
What lab/hospital did the skin biopsy that showed auto-immune activity? And do you have auto-immune results on blood tests as well? Thanks!
Posts: 204 | Registered: Jan 2005
| IP: Logged |
Lydie
Unregistered
posted
My ANA has been around 1:640 the whole time I have been dealing with Lyme (5 years now, although I was probably bitten 22 years ago). I also have the HLA-DR 4 type.
My main symptom, which had a sudden onset in 2001, is the type of burning nerve pain that is being described. Antibiotics have helped, but the pain is still there quite a bit. Mine is worse on the left side of face and my left arm, and foot, but it is sometimes everywhere. The skin looks normal.
However, at one point, maybe 3 years ago, I had eyelid surgery for a small cancerous lesion, which resulted in quite a bit of tissue being cut away, and then cosmetic surgery afterwards. It looks okay now, but it was quite extensive.
A week or so later, I developed a shiny red rash at the worst places of my nerve pain, and the sensation worsened incredibly, so that even a gentle breeze hurt. It felt like it had been scalded with boiling water. It was quite visible and drew comments everywhere, which I disliked intensely.
That is when my skin was biopsied, at a dermatologist's, and it showed either lupus or dermatomyositis, they said. I asked for a Lyme test but at that point she'd done the biopsy and this MD had no knowledge of how to go about a Lyme test. So, if you pursue a biopsy, make sure to set something up so that it can be tested for tick-borne illnesses.
The thing is, I knew this phenomenon was related to the Lyme sensations because the redness and new level of pain followed along the same nerve pathways, on the side of my face, down my arm and hand.
Things went back to "normal" awhile after that with no visible sign of the burnings sensations. I would say that the nerve pain has moved from being sort of from the skin level, down to a deeper kind of pain, which sort of vibrates (or twitches), maybe in the muscles, definitely deeper than skin level.
For me, the burning sensations can also be prickly, or even itchy. Then they will return to the burning.
Oh- my EMG was not normal, but I'm not sure it was related to this.
The theory is that Lyme triggers autoimmune activity, which should resolve with treatment. However, I have read that this type of nerve pain, which might be parasthesia or dysthesia or hyperthesia (?) is a sign of longstanding, 3rd stage Lyme and can be "intractable."
I am resigned to it, at this point, and can get my mind off of it if I am out of the house and busy, pretty much.
David, sorry I didn't answer, I've been driving kids around. The neurontin or the amitryptilene helps a lot of people, but I seem to be hypersensitive and they both made me worse. But...try them. A lot of people are helped.
IP: Logged |
posted
Hi The twitching can be anywhere/everywhere in the body.
The primary places are in the face/eyes. One of my first symptoms was twtiching from eye to lips.
Due to Marnie, I take large dosages of Mag. I can tell when the mag leveal are low---I then twitch.
The twitching is nothing compared to the burning.
Alpha Lipoic Acid is suppose to help burning.
I beleive the Elavil 25 mg PM, was the only thing that helped. I think I then became immune to that.
Pain meds did nothing.
Stay warm All!!!!! Oh yea, the cold increases the burning. YIKES!!!!!!!
Posts: 468 | From IL | Registered: Oct 2003
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
davidx~
The skin biopsy is being done by a neurologist. I believe he is looking at the small nerve fibers to see if they are damaged (or what their condition is). He is not, to my knowledge, seeking the lyme bacteria in that biopsy.
I am, however, having some uterine tissue looked at for lyme and co-infections. That's the only tissue that has been saved from my surgeries. (The doctor didn't save any knee tissue--that would have been nice!)
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Lydie
Unregistered
posted
My skin biopsy was done by a dermatologist, because I had the red shiny "rash", which they ended up diagnosing as cutaneous lupus. I know it was Lyme, because it followed the path of my Lyme neuropathy. It only lasted a few weeks.
Biopsy of the burning sensations that we all have, without a rash, might be helpful- I have no idea. There are a lot of tests that can be done, and a neurologist would be the one to do them. I don't know if a biopsy of the same places on my body, with the burning but without the rash, would yield the same results.
For a lot of people, antibiotics help these things, and also resolve autoimmunity. But not for everyone. After 5 years, I am a lot better on antibiotics, but not all the way- and, if I get off for even two days, I go right back to the beginning. This isn't true for the majority though.
IP: Logged |
Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I was just looking at a picture of me taken three years ago at a party.
I look like my face is on fire. It was like that all the time and actually preceeded most of my other Lyme symptoms, like my arthritic knee and my numb foot.
It was very similar to what DJ described. I would splash cold water on my face constantly, and it didn't help. Nothing seemed to help. It always got worse for me at night.
I didn't really think of this as being a symptom of Lyme. In fact, when I first saw my LLMD, it wasn't even on the list. I guess I figured it was just something I had to learn to live with.
Anyway, after 6 months of treatment -- with abx and supplements, foot pads and weekly acupuncture, a lot of water -- that is one symptom that seems to have gone completely.
I have NO idea why this was the first thing to leave, but I have to say I hope it doesn't ever return!
I wish the same thing for you.
Andie
Posts: 2549 | From never never land | Registered: May 2005
| IP: Logged |
Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Just a reminder to all of you with this symptom: a proper symptomatic treatment is Carbamazepine (dose usually 300-1200 mg/day) or other antiepileptic drugs.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
| IP: Logged |
posted
Burning pain across the chest, around my neck and down my arms was a fairly major symptom for me, though there were other symptoms that were much more debilitating. I didn't find anything that would really relieve that odd pain, except for, in the long run, mountains of antibiotics, etc. When I could sit in a sauna on a daily basis, it might have flared at first, but then, for a long time, it would help with this immensely. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
| IP: Logged |
HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Burning again!!!! Arms, face and hips. My arms are super sensitve. Ow!
It hurts and is so uncomfortable.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Eek!]](eek.gif)
Printer-friendly view of this topic