posted
I know you all have heard me whine about burning plenty. The burning is bad today, I cant help but whine more. 300mg of Lyrica is suppose to help but it is not. If it is not helping does this mean it is not neuropathy?
Does anyone else burn all the time? For me it is real bad in center of back up through shoulders, calves and thighs.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Very Very Very bad, with me its like someone took my legs and dipped them into hot acid!!
Search the term nueropathy.
IE staying away from sugar really helped!
I used to torture myself by drinking 10 cups of cofee a day with sugar in it thinking that this would give me a boost.
All it did was mess me up even more!!!!!!!! Dont do it
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I burn all the time also! Mine is deep in my shoulders and spreads down to my elbows and wrists at times. I have no idea why. It also burns deep inside my hips quite a lot lately. I know it is no fun! Sorry you are burning too! Take Care! Kellyann
Posts: 8 | From usa | Registered: Feb 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I burn too...just under my skin...over all of my body, including head AND private parts (UGH). I also "spark" or have electric jolt type feelings.
It has gotten better with treatment. In fact, I got to a point in treatment where it seemed that my only symptom left was the burning nerves.
Then I had to stop treatment due to a fungal infection in the picc line, and C. diff, and many of my symptoms came back AND the burning got worse.
I am hoping that with further treatment, all my symptoms will go away (including my burning nerves.)
We can always hope (and pray) can't we?
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Was my worst symptom for years, but is near gone now... It improves with proper treatment...
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Just out of curiosity....How many of you saw a neurologist in your search for a diagnosis, and what did they diagnose you with?
Did any of you have a neurologist that diagnosed you with Lyme disease?
I saw FOUR neurolgoists, and none of them diagnosed me. I even suggested lyme disease to the last one and he rolled his eyes at me!
I was pleased to send him a copy of my report from Columbia University Medical Center stating that I had lyme disease!
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I saw a neurologist when I developed muscles spasms and jerks and almost like seizures. The guy was nice enough. But we had a major disagreement because he opined that this is not neurological and perhaps I should try prozac or antianxiety meds. That made me mad. I said that whenever you specialists can't find something, you blame it on psychiatry, and that is b.s. Don't you understand, I said, that this is an infectious disease that is causing inflammation of the brain due to toxins and the bacteria itself? But that does not fit into his box of specialty.
The second visit we reached a peaceful solution because I said, what if we call it Neuro = Psych and he agreed.
All my tests were negative, the MRI had no spots in it, the nerve conduction test, etc. He wanted to do a spinal tap "to get conclusive evidence that you have Lyme" but I said no, I already know conclusively I have Lyme.
My daughter's neurologist at Kaiser was an a**h*le who when he couldn't find anything accused us of poisoning her with arsenic, and then intimated that she was faking her seizures because he could not find EEG correlates but did not do a lead through the nose to the back of the brain. I think now that her seizures were also caused by brain inflammation. But he never once considered Lyme. We fired him.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Bothrops, I'm really sorry you have to deal with this symptom.
For me, it's been part of Bartonella, and tonight, it's really flaring.
I got in a situation today and did a really not-bright thing: while I was out, I had a sandwich on bread they claimed was multi-grain. I only had about a third of it, but at this point, my symptoms are worse than they've been in about a month.
Normally, I'm fairly careful about what I eat, so I'm sorry I made that choice. For me, wheat is a much worse trigger than sugar (though that's not great!).
That burning sensation (which I get on my lower legs) has diminished since I started taking rifampin. I hope I didn't lose too much headway today.
Feeling the pain I'm in tonight makes me realize just how much better I had actually gotten.
Hope this gets better for us all.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Yes, i have the burning.......bladder and private parts.......sometimes my feet.
I saw a neuro duck, thought it was my neck...diagnosed migraines saw 3 neurosurgeon ducks only one thought lupus and systemic illness. the neuro did order a lyme titer....hahaha quest only did an IGG.
Andie- sorry to hear you reacted to wheat......i think i may have a similar problem to wheat as well. and eggs.
-------------------- "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
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
I used to burn: shoulders, arms, neck, thighs, feet. Took me almost a year to reduce it to something that I call skin hypersensitivity. Still a way to go.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I used to burn inside of my biceps and arms...mostly right arm.
Now I also burn at the skin level or right below it on both legs. mostly in the thighs and mostly in the front.
I sometimes feel like my joints are on fire too.
I dont mind it as much as feeling like there are razor blades in my muscles and like a sledgehammer has hit my joints.
I havent noticed anything that helps or hurts. Well, actually hot long baths make it WORSE. BUt I try to ignore that. I love those baths too much.
best of luck,
Posts: 1950 | From New Mexico | Registered: Sep 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I used to get it so so bad,,
The burning feet face back of hands.
Id eatten some pancakes then 30 minutes later I would pass out and start moaning in the car.
My Friends would be like "whats wrong with you" I said THE BURNING STABBING PAINS IN MY FEET uhhhh uhhhh,,,,, nedless to say they stopped hanging out with me.
My vision would also go doubble and my eyes would look like I was on drugs.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I hate to see all of you deal with this burning crap, but feel better to know I am not alone.
I can honestly say that I have never noticed a differance in what I eat but do notice an increase in symptoms during bad weather.
Burning is my worst symptom, that is saying alot considering how dizzy, spaced and tired I am. When I burn bad, especially face, I feel like im running a fever. I really can not understand why the lyrica is not working. I thought thought that was what it was for.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Canabis may work for skin hypersensitivity and burning. There was some research done. But it will also negatively affect immune system and is not exactly legal in the US. Can be legaly used in Canada.
Many patients with MS also have this symptom of burning skin or hypersensitive skin. Many use Canabis to relief this pain.
[ 24. March 2006, 12:43 PM: Message edited by: Areneli ]
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
Burning is always present and dull in shoulders neck ears feet and hands.
When in a herx the burning is excruciating. feel like entire body is on fire. Want to die.
Now in third month of abx treatment, had two bad herxes so far each lasting five days. I pray that the next herx will be less as the neurotoxins should not be as plentiful.
Two neuros (one head a yale) told me that I was perfectly fine even though my hands and feet were burning and tingling and my brain was exploding.
One said that if I could ever show him a pos lyme test then he would consider doing a spinal tap.
HA NO WAY BUDDY!!!!! don't need a neg spinal tap shoved in my face for him to prove I am a hypocondriac...
(BTW, I did get a CDC pos test from stonybrook but never told him-- he he he he....)
AND THIS IS IN CT!!!
-------------------- We are spiritual beings on a human journey...
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have burning in my feet, hands, bladder, private parts, nose, eyes. Skin sensitivity in hands and feet, especially fingertips. I associate the skin sensitivity with toxins. Sometimes I get a different kind of burning in my arms and legs when I move around much, like cleaning the shower etc.. It's muscle burning instead of skin.
I take b12 but only 2,000mcg in pill form and not always with folic acid. In light of this conversation I will up the b12 and add folic acid every day and see if that helps. I don't eat sugar and haven't for years. I rarely eat wheat. I have noticed over the years that using antimicrobial treatment helped a lot so I assume it is related to infections of some kind.
The burning in feet and hands is common with neuropathic damage for diabetics. My dad's got a lot better when he got the blood sugars under control. I've had hypoglycemia for years so maybe that has something to do with it? I really think the underlying cause for me is infectious. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
Wow, this is like the million dollar question. This continues to be a "pain" in my a** symptom as well. I get it mostly in face and sometimes ears and sometimes in my eyes.
Sometimes there is a low grade temp and sometimes nothing. No one can tell me what it is all about, and the only thing i can think of is that is is neuro.
I have it almost everyday, and the wierd thing for me too is that it is worse on the days were the weather is crappy, and i can take a hot tub, or bath and it feels better for hours, go figure. DJ
-------------------- D.J. Lyme Posts: 69 | From shoreline CT | Registered: Dec 2005
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posted
I burn all over too, esp. scalp, feet hands. I have it on legs and hands too.
I saw 3 neuro's. the first one said he "didn't have a clue" what was wrong with me. He said I don't fall into any known disease category. He sent me to neuro #2
Neuro #2 first said it was from my neck surgery then said "we may never know what's wrong with you"
Neuro #3 said fibromyalgia and also that I'm depressed.
Of course I'm depressed. I'm numb and burning all over and know one knows why.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
Extensive burning sensations for me as well, especially on the legs, have occurred almost daily in the past. However, over the last few months the degree of burning has diminished significantly.
The improvement could be due to the nightly 2000 mcg of sublingual Methylcobalamin (biologically active form of B-12), although it is difficult to prove.
Also I have started Magnesium Tabs SR (= Slow Release over 12 hours)obtained online from http://www.niche-inc.com to determine if this helps the other peripheral neuropathy problems (twitching, buzzing, formications and myalgia).
Posts: 59 | From Canada | Registered: Mar 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
How many of you have tested positive for bands 18 and 93 on the WB? Dr. B states these bands are specific for neurological lyme.
I have tested positive on those bands.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
Although it is so sad to read about everyone's misery with burning pain, it is reassuring to know I am not alone in this.
My burning is mostly hands, feet and between my shoulder blades, although it is also on legs and arms etc, but not as bad.
I don't remember this 'burning' feeling before I started ABX for Lyme. My hands, feet and between shoulder blades was always the most painful, but I didn't use the word burning to describe it, mostly aching, bruised muscles.
Anyone else not have the burning til they started ABX?
Happygranny
-------------------- Dxd clinical Nov 05 - March 08 tested low pos. from Igenex Started Bicillin/Flagyl Oct 2008 was on Ketek Tinidazole prior - PN, concentration low, tinnitus, PVCs, sore lymph nodes, hair loss, joint pain with some swelling, muscle tenderness. Posts: 56 | From Manitoba | Registered: Feb 2006
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posted
I had this symptom for awhile and still have it a bit here and there. After thinking about this endlessly (as I usually do) and trying to understand my body, it seems like I have 2 sensations: burning and skin hypersensitivity.
Anyone else seem to have a combo of these 2? Over time the burning seems to have settled down a bit (6 mos of abx probably have helped somewhat) but I am left with this skin sensitivity. Anyone else have this? What I mean is that clothing (in particular) does not feel right..isolated to my legs. At best it feels like wet clothing on my skin and at worst the clothing gives me stabbing pains.
Timaca- I had 2 ++ for band 18 and 1 + for band 93 and the spect scan also shows lyme so I think that sums in up for me.
If anyone has successfully gotten over this PLEASE post what you took and for how long!
~David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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Oh my gosh, for the last five years...before I realized that my Lyme was back, I have been saying "I can feel my clothes" I have felt my clothes in that weird way for so long , I guess just got used to it. I just tested positive for Bart. I never knew I had it. That may contribute. I have just started taking meds again and supplements...Mag. three times a day at about 600mgs. If anything helps I will let you know. I cannot believe someone else has this. I also get the "spiders' feeling next too my clothes on my skin. You?
Posts: 298 | From los angeles | Registered: Mar 2006
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A good night's sleep helps me with "burning of the clothes" feeling. The wet clothes thing is not helped by the sleep, but the burning is.
Posts: 298 | From los angeles | Registered: Mar 2006
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alexander
Unregistered
posted
so since we found out we share similar symptoms the most interesting question for me is: which abx-combo helped most against nerve burning?
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posted
Well I have tried most and can only say that flagyl makes the burning pain worse.
Posts: 208 | From Greenville SC USA | Registered: May 2005
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