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Avatar universal

Burning Skin Anyone?

HI All,
I see this thread is old but I figured I would try it post anyway.
I have burning on the tops of my feet and on my hand too.
Sometimes my cheeks feel tingling and my thighs can burn too.
I have had so many tests - no peripheral neuropathy no small fiber neuropathy, no rheumatalogical conditions, no diabetes, not thyroid issues, and no MS.
My neurologist wants to send me to Mayo Clinic.
I am on neurontin and elavil and it only takes the edge off and makes me groggy.
I noticed today on my quest blood work that my band for 41 IGG was reactive but my 41 IGM was not.
I spoke to a lyme literate doctor that I am going to see soon - she thinks it is possible that I have lyme.
In 2008, the docs thought I could have it but my tests were off per CDC guidelines.
I was given doxy and insisted that I have it for a full month at least.
My symptoms started in April of 2015 with feeling like a hair was around my toes, progressed to my toes going numb when I slept, and now to the burning. I also sometimes get the feeling of freezing cold in my left foot.
I tell you, this is just nuts.
The only other thing that is on my radar is that I am close to or in menopause and my hormones are tanked. My neurolist says he has seen my symptoms with that too.
I am starting bio identical hormones on Thursday. The birth control pills did nothing to help in the month that I took them. I am afraid and feel that my life is in a holding pattern until I can get this under control. I used to be super healthy and exercise quite a bit. I am currently not exercising .
Thanks,
Amy
4 Responses
Avatar universal
You say:  "My neurologist wants to send me to Mayo Clinic."

As a group, neurologists are not big believers in Lyme as a serious infection, so they tend to put it way way down the list of possible ailments.  If they do diagnose Lyme, they are likely to give a short course of antibiotics that are not very effective against Lyme, and any continuing symptoms at that point are often called 'post-Lyme syndrome', meaning your immune system is over-reacting against a now-dead infection by Lyme.  Lots and lots of explanations and excuses.

Many docs have been taught that Lyme is rare, hard to get, and easy to cure, so it's no big deal.  Uhhh, wrong.  Lyme is a relatively new infection and it is spreading fast, but docs aren't always ready to understand that.  

Among MDs, neurologists are often the most stubborn when it comes to Lyme disease, insisting that Lyme is rare, hard to get, and easy to cure with a short course of doxycyline.  That was the first effort the medical community made against Lyme a few decades ago, and the neuros (as a group) are still clinging to that view.  Just the list of tests you have had run on you would (to me) indicate the doc is being stubborn and is ignoring Lyme as a possibility.  
  
"My neurologist wants to send me to Mayo Clinic."  Before you go there, I would, in your situation, find a Lyme specialist for a a work up.  A brief physical exam and some blood tests is all that would likely be done ... it just has to be the RIGHT tests.

"I noticed today on my quest blood work that my band for 41 IGG was reactive but my 41 IGM was not."  IgG and IgM bands are looking at two different time frames:  IgM is what your immune system rolls out to fight an early case of Lyme, then after a while, the immune system switches over to make IgG, which is effective later in a Lyme infection.  A double whammy against the Lyme!  These two tests are not perfect, but any positive result (such as yours) is something I would pay serious attention to.

"I spoke to a lyme literate doctor that I am going to see soon - she thinks it is possible that I have lyme."  Yes!!  Do it!!

"In 2008, the docs thought I could have it but my tests were off per CDC guidelines."  The CDC guidelines are seriously outdated, but the docs who first 'discovered' Lyme only a few decades ago still insist on their early assessment that Lyme is rare, hard to get, and easy to cure with a short course of ... doxycycline.  

You say, "I was given doxy and insisted that I have it for a full month at least."  Except very very early in the infection, doxy is not effective against Lyme, because Lyme goes into hiding in the body where the immune system AND the antibiotics cannot reach, creating slimy areas in the body that protect the Lyme bacteria.  Different meds and longer treatment time is what a Lyme specialist would likely prescribed.  It works.

"My symptoms started in April of 2015 with feeling like a hair was around my toes, progressed to my toes going numb when I slept, and now to the burning. I also sometimes get the feeling of freezing cold in my left foot.
I tell you, this is just nuts."  Lyme affects everyone differently, so don't try to match up your symptoms too closely to what others have.  

See a Lyme specialist:  I went through *20* MDs before one of them finally tested me for Lyme, and when the test (one of the older, less accurate tests) came back positive, the doc blew it off and said (direct quote):  "You could not possibly have Lyme.  I have patients with Lyme, and they are all ... near death."  Nice, huh.  It happens that an old friend of mine had had Lyme some years before I got sick, so I knew a bit about Lyme and RAN (okay, hobbled) to a Lyme specialist, got properly diagnosed (Lyme and a co-infection, babesiosis), and treated.  That was about ten years ago, and I am still well today.  It's worth doing.

You say, "The only other thing that is on my radar is that I am close to or in menopause and my hormones are tanked. My neurologist says he has seen my symptoms with that too."  Yeah, maybe -- I was about that same age when I got Lyme -- but I would definitely sneak off and see a Lyme specialist for a second opinion.  You don't need to tell your neuro you are going to see a Lyme doc.  Just do it.  The worst you will find out is that you DON'T have Lyme.

"I am starting bio identical hormones on Thursday. The birth control pills did nothing to help in the month that I took them. I am afraid and feel that my life is in a holding pattern until I can get this under control. I used to be super healthy and exercise quite a bit. I am currently not exercising."  Good for you for keeping a grip on wanting your life back!  Don't give up -- just find a Lyme doc and go!

"I am on neurontin and elavil and it only takes the edge off and makes me groggy."  Be sure your Lyme doc knows you are taking or were taking these meds and others, so the Lyme doc can take that into account in your symptom presentation.

"I noticed today on my quest blood work that my band for 41 IGG was reactive but my 41 IGM was not."  That is likely a function of time, as mentioned above here:  as time passes, your immune system will switch from one form of antibodies (IgM to IgG).  Both are important markers.  Take copies of all your tests to date when you go see a Lyme doc.  If your current doc isn't giving you full copies of all your tests, sweetly ask the receptionist or nurse for copies 'for my files' ... and you need not say you are going to see another doc.  

You say, "I spoke to a lyme literate doctor that I am going to see soon - she thinks it is possible that I have lyme."  That would be the way to bet.

"In 2008, the docs thought I could have it but my tests were off per CDC guidelines."  The CDC guidelines are outdated, as mentioned above, and a month of doxy is not effective against Lyme unless you have a very very recent infection.  Many of us don't know when we were bitten or infected, so guessing how long you've been infected is a loser's game.

"I was given doxy and insisted that I have it for a full month at least."  A month of antibiotics is likely not enough treatment (unless you were very very recently infected, and many of us don't know when we were first bitten).  A month of doxy is "old think".

"I am close to or in menopause and my hormones are tanked. My neurologist says he has seen my symptoms with that too."  It's what a doc would do and say when s/he doesn't really understand Lyme.

"I am starting bio identical hormones on Thursday. The birth control pills did nothing to help in the month that I took them. I am afraid and feel that my life is in a holding pattern until I can get this under control. I used to be super healthy and exercise quite a bit. I am currently not exercising."  Take hormone replacement therapy (HRT) is not bad, but it won't take care of Lyme and its companion infections.

You don't need to tell your current doc you are going to see a Lyme specialist for a second opinion:  there is a war going on in the medical field about whether Lyme is serious (or not) and how to treat it (or not).  But I would definitely go see a Lyme specialist.  There are docs who think they are Lyme specialists but are not, but ILADS can likely refer you to a doc near you.  Also, patient groups near you often have the scoop on who the good docs are.  Not all docs are up to speed with Lyme, even if they think they are, so keep your eyes open.

Let us know how you do, okay?  I know it's a hassle to do all this when you're not well, but it's well worth it.  You go!!  ... and let us know how you do, okay?  

(Sorry, no time to proof read this, so if something doesn't make sense, post back to us here, and we'll clarify.)
1 Comments
Thank you Jackie! I really needed someone to support me today :)
I am seeing the lyme doctor on Saturday!! She wanted to fit me in and managed it. I have all of my test and will write out my meds.
I had another interesting thing happen this week - seems my b6 is off the charts high 142 ( range is 2-21) Now I am wondering if this could be causing my woes. I have stopped all supplements and am attempting a low b6 diet. I am so absorbed by all of this health stuff that I am struggling with my other "normal" life.
Amy
Avatar universal
This is the kind of data (about your test results) that your new doc could find very useful ...

If you can, take copies of ALL your tests so far in your battle with Lyme.  What may have been a 'so what' from your other docs could read very differently by a Lyme doc.  Be sure to give your new doc the B6 levels etc. so that the doc has a complete picture of all the data.  

Sometimes I think when a patient goes for a second opinion from a new doc (as you are doing), the patient just clams up and doesn't give the history, the test results, the medications taken (how much and for how long) and so on.  There may be things that the previous doc didn't fully understand, but a new look at the data by a new and more experienced doc (esp. in the field of Lyme) can make a huge difference in what the new doc perceives.

Think of it like buying a used car:  wouldn't you want to see all the service records the previous owner had?  (Such as:  how often the oil was changed, any problems the car had, etc.)  Docs are the same way.  Give them lots of data so they can see into the past.  Your B6 numbers are something I'd be sure to tell the new doc about ... and even better, give the new doc a full copy of your B6 and other tests from the old doc's office.  You have a right to get full copies, even if the doc makes you pay the photocopy costs.  There can be valuable data the old doc simply overlooked or didn't understand.

Let us know how the new appointment goes!  Fingers crossed!!
Avatar universal
Yes, I have all of the info ready to go!
I'll update you tomorrow.
Thanks for caring.
Amy
1 Comments
Sending you many good thoughts.  :)  Will be waiting to hear!  And if it's not exactly what you would like to have heard, don't give up -- just go to the next plan.  Fingers crossed!  (X)
Avatar universal
Just got back!
So here is what my new favorite doctor ever had to say!

Just returned from a 2 hr private pay specialist in my area-  Dartmouth and Mayo trained internal medicine Doctor
Who is also Lyme literate.
She said I must have a defective genetic snip related to my b6 breakdown. People used to do 23 and me tests to help determine this. FDA now prevents 23 and me to comment on this type of info. She suggested I do 23 and me and run the results through
Genetic genie.
I think I will do it and then have my kids do it.
I have had Lyme in the past, and she says it wasn't treated properly and is likely rearing its ugly head again due to an antibiotic that I was given for a few months prior to my symptoms starting .
Says this antibiotic breaks down the biofilm that Lyme was hiding in.
So...
Antibiotic for urinary infection in 3/15 brought out Lyme and nerve symptoms in foot started 4/15
Started supplement with B6 for symptoms
Metabolic problems with b6 caused my toxicity and worsening of symptoms.
Plan:
Low b6
Treating Lyme disease with a very specific way per my Lyme literate new doctor!
F/U in 2 months!!
1 Comments
Wow!  When you get a move on, you get going fast!!  YAY!!!  Most excellent.  Keep us posted -- and take care -- !!!  J.
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