LymeNet Flash: still burning-still herxing?

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Posted by Nal (Member # 6801) on :

Geez, I am a mess! My skin is still burning. Muscles and joints don't ache near as bad. Why the burning skin? Yep, one of my most common symptoms but I still hate it!! Even my scalp is burning!! Im trying everything but not much help. Im taking flagyl (1000mg once a week) and diflucan-100mg 1- 3x's per week. Still herxing?? I know it's not a drug reaction or anything like that. I just hate this symptom!

Nancy

Posted by timaca (Member # 6911) on :

Nal~

All I can share is my experience. Before I knew I had lyme, the nerve burning pain (for me it is just under the skin) was my first symptom. And it was EVERYWHERE...even my eyeballs at times.

The most painful area was just under my scalp. My left foot would burn a lot too, but it was "further away" from the brain, and even though it was very painful, it was not as painful as the scalp burning.

Some vancomycin given to me during my knee surgery caused the burning to flare big time (looking back, it was probably a herx).

Now (17 docs later, including 4 neurologists who didn't have a clue as to why I had burning nerve pain)...I know that I have lyme.

I am on antibiotics...2 gms amoxicillian a day. I have not had a herx to speak of...certainly nothing like I had with the vancomycin. But IV vancomycin is more powerful, I would imagine, than amoxicillan.

I still have some nerve pain...yes, it is a main symptom still. It's just not a level 7 or 10 like it used to be. More like a 3 or 4 most days.

I imagine when I start the IV rocephin, it may kick up.

Hopefully, as the lyme is killed off, the nerve pain will go away for both you and I!!

Tina

Posted by fiddler (Member # 3993) on :

Like I said in your earlier post on burning...I had a 'flare up' (haha- that is a nice way to put it- more like from h*** burning in my forearms, hands, shines, feet) for close to 12 weeks last summer. Yes, it was the Lyme- was it a herx? I like to think so...but who knows.

Then it subsided, but I still have it to some extent always. Lately it has been pretty bad again.

So, at least you know you are not the only one who has it- I did think last summer that I was going to lose my mind- IT WAS SO PAINFUL- unbelieveable & relentless. Noritriptyline (sorry- wrong sp.)- which is an anti-depressent given at low levels to hlep nerve pain- did help it perhaps 20%- which was better than nothing.

Have you spoken to you LLMD about trying anything to help with the pain? I tried Neurotin (did nothing) & they also gave me high powered pain killers (which I hardly took as they are very addictive & I was scared of that factor).

Thinking of you. So sorry.

-Sarah

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Posted by Nal (Member # 6801) on :

Thanks guys. When I herx i get scared as hell! I hate the burning pain-hurts just to put clothes on! When it flares I get really mad then start wondering "is it a herx?", "am I having a bad reaction to the meds?". Its crazy. Right now I am waiting for a call from my holistic dr to see what we can come up with. I hate this!

Nancy

Posted by ibrakeforticks (Member # 6785) on :

If it's a herx then the dead bugs and their toxins could be contributing, so are you doing anything to get rid of this junk? I think cholestyramine and the Heel homeopathic Detox Kit may be helping me. Idon't have any advice, but there was a post about different ways to detox a couple weeks ago I think. I can't wait to hear how you overcome this symptom, so hang in.

Posted by Areneli (Member # 6740) on :

Detox doesn't work for burning skin. I have been there. It is in the brain and it is damage to sensory centers. Even if the bug gets killed it will still take a loooong time to heal damaged fibres.
During Herxes toxin gets right onto sensory fibres. I don't think you can do much about it. Sleep as much as you can, perhaps.

I wrote before, that the only drugs that can truly help the symptom somehow are antidepressants.

I was also thinking that acupuncture may help for that but never tried it myself. Perheps you will.

[This message has been edited by Areneli (edited 01 June 2005).]

Posted by Nal (Member # 6801) on :

I spoke to my homeopathic dr today. She recommends glutathione to help detox. Ill be ordering some of that I guess. I also have to increase my b-12 injections to one daily for two weeks. I know its flaring because of a herx but it is definately rough. She also recommended St Johns wart for nerve pain-ever hear of that before?

Nancy

Posted by BJG (Member # 4723) on :

Hi Nancy,

I too have skin burning, all over.
It is my primary symptom as well.

I do not know for sure, because this disease is so crazy, but I think Flagyl made my skin burn more. I think Rifampin helped.

Most of the time I cannot wear shoes-sheets hurt my toes. All clothes must be BIGGGG.
Nothing close fitting.

I would suggest warm baths.
You can add epson salts and Hydrogen Peroxide
But a simple warm bath should help.

Email me if you would like.

I take Rifampin and Biaxin now.
I will rotate Biaxin with Quinine and Clydi.
Rif is my base antibiotic.

Good Luck,
Peace,
Bjg

Posted by Areneli (Member # 6740) on :

Be careful with St Johns wart. It will change metabolism of antibiotics.
You don't want that.

[This message has been edited by Areneli (edited 02 June 2005).]

Posted by Foggy (Member # 1584) on :

Be sure to mention this to your LLMD to be safe.

I had burning from bb and it took bout a year to improve.

I also hd burning from a chelation drug my LLMD gave me so one has to be very careful.

Posted by fiddler (Member # 3993) on :

Nal,

IMO only...if your burning is due to inflamed/damaged nerves....YOU NEED TO TALK TO YOUR LLMD because you really should consider trying: Nortriptyline, Neurotin, prescription pain killers. Now, as I said before, I haven't had great luck with any of these, but the pain killers did help me sleep (yes, the pain was still VERY MUCH THERE)- but I felt sort of high and sleepy so it did help me sleep. And one of them may help you..it is worth a try.

Nothing against your alternative doc. (I strongly believe in alternatvies..)_ it's just that you may need to address the problem with straight medication as well.

Having lived through this, this is my opinion. However, I am no expert & like I said I am still having nerve problems months later after that 'flare up'. YOur nerv pain it might last a long time (I am sure it already seems like it has been there forever...I know that feeling...I pray it doesn't)- but DO NOT WAIT TO GET HELP FROM YOUR LLMD.

In addition to my LLMD, I also ended up going to a pain management clinic for the nerve pain. Although they weren't knowledgeable about Lyme, they did offer some advice for nerve pain. I ended up getting a "Nerve Conduction Test" run & surprise, surprise...it was "Normal"- as with Lyme so many times things show up that way. It was sort of reassuring to know I didn't have 'detectable damage'- but that didn't make the pain any less...

I tried glutathione myself (In IV form)- it didn't help the burning, but over all I thought it helped my immune systme some what. However, I have researched oral glutathione on the internet & there seems to be no evidence that the oral version is much good. I can almost guarantee it won't touch that nerve pain.

Keep in touch. Hang in there.

-Sarah

Posted by trailsgrl (Member # 7285) on :

nancy,

Careful with st. Johns wart! It caused major hives and allergic reaction in me. If you have any hay fever or seasonal allergies, you shouldnt take it. Also ragweed allergies.

But some swear by it.

I took Elavil...tryciclic antidepressant at the low dose of 10mg and that helped my nerve pain. (not burning skin but other types of nerve pain) Email me if you wanna know more about that.

Trails

Posted by Foggy (Member # 1584) on :

I tried IV Alpha Lipoic & Glutathione and no dice with the nerve pain. It did lower my metals levels, though.

Posted by krazykt1 (Member # 3739) on :

I know for me the yeast causes burning and the yeast die off (diflucan) also causes burning..

Posted by Lyddie on :

I've had this for more than 4 years w/Lyme. A really hot shower (on my scalp) followed by a really hot bath seems to be the only thing that gives me any reduction in pain (though at first the hot water causes increased prickly sensations).

Also, I find that I am worse in warm weather, or in sun.

Funny that the hot shower/bath combo reduces my pain while warm weather increases it, but that's what happens with me...

Posted by Nal (Member # 6801) on :

Thanks guys!! My homeopathic dr is great in that she knows that I am doing both her remedies along with antibiotics-she has no problem with that and that is why she is careful to suggest things that will not interact.

I do not expect the glutathione to reduce the burning pain-I will be taking that to help boost my nervous system. The oral form she recommends is supposed to be new and she has seen great success with it-all I can do is try it.

Is it yeast? Is it Lyme-who the heck can tell?????? I never get vaginal infections so I doubt it. I still have to take antibiotics so how do you do that if its a yeast problem? Again the skin burning was my first (very first) symptom. I do flare when on the meds so I have to think its a herx.

I can not tolerate antidepressants. Believe me, I have tried almost every one of them!! I can somewhat tolerate nortriptiline and if I have to I will go back on it. Elavil sent me to the hospital with an incredibly fast heart rate (like well over 200-it was awful!).

Those of you who get burning pain from yeast die off-where do you notice the pain the most? Again if its yeast, how am I supposed to fight the lyme at the same time????

Nancy

Posted by Nal (Member # 6801) on :

I just want to add that I think its strange-the skin burning was pretty much "under control and gone" until I started taking antibiotics a couple months ago. Now, boom!!!! Its angry and letting me know! I guess thats why I feel so strongly its a herx sign. Could it also just be that since Im trying to kill the lyme bastards that my nervous system is saying "wow, whats going on here? I don't like this" and it reacts with horrible pain? Ok, that could be why a herx though right? Im rambling. Im going to bed.

Nancy