Who has burning sensations?

[patsy10]

I am curious as to how many of us have or have had burning sensations.  This can also include tingling and other sensations like numb feelings, cold sensations etc....

[JackieCalifornia]

You are doing what I would do -- keep a wise eye on the doc to be sure you understand and agree with his/her approach.

... and here's why:  Elavil is an anti-depressant, not an antibiotic.  Anti-depressants don't cure bacterial infections.  And neurologists are well known for not 'believing' in Lyme as a serious bacterial disease that needs to be treated as such.  It sounds like the doc thinks you have emotional issues and not a bacterial infection.  I would find a new doc.  You don't need to tell the neurologist you are seeing another doc.  It's none of his business if you don't want to tell him.  

Do get copies of the test results ... and it may be that the doc was giving you Elavil just to help you feel better till the test results are in, but neurologists as a group are famous for not 'believing' in Lyme.  So I'd find another doc in any event, but you are entitled to copies of the tests, and do show them to your new LLMD.

To find a true Lyme specialist, email to

            contact   [at]    ILADS    [dot]     org

and tell them what city you live in or near and how far you can reasonably travel. They will send you the name(s) of ILADS docs near you.  ILADS stands for International Lyme and Associated Diseases Society and is the main voluntary group for MDs who understand that Lyme is a serious illness that need proper testing to see if the tick that brought you Lyme also brought another infection altogether, which about half the time, the Lyme ticks do.  These 'co-infections' usually need different meds from Lyme.

Lyme is curable, but accurate diagnosis of Lyme and any co-infections is necessary so the doc knows what and how to treat it.  Non Lyme specialists just don't understand or believe this.

I'm not medically trained, but that said:  Elavil might help you feel better and be worth taking, but it won't cure a bacterial infection like Lyme.

Let us know how you do, and how we can help, okay?  Best wishes --

[JackieCalifornia]

You truly are NOT alone.  We've all been where you are, in one way or another.  Not everyone has exactly the same symptoms, due partly to different immune systems and often due to having bonus diseases the Lyme ticks carry in addition to Lyme (called 'co-infections').  After taking your history, a Lyme doc will know what co-infections to test for and treat.

Doxy works in a very recent infection, but if you were bitten or could have been bitten longer ago than a few weeks before you started treatment, doxy may not be effective, because the longer Lyme has been around, the more likely it is to hide in your body in slimy shields the bacteria make to protect them from your immune system -- there are meds that can break through these 'biofilms', but doxy is not one of them.  

Docs can believe that they are Lyme docs, but they may not be practicing up to current standards as set forth by ILADS, the International Lyme and Associated Disease Society.  You can email to

             contact   [at]   ILADS   [dot]    org

and tell them what city or near what city you live in, and they will send you names of Lyme specialists near you.  Oddly enough, infectious disease docs are often not up to date on Lyme diagnosis and treatment, so what specialty the doc is in is less important than the doc's point of view.  If the doc is registered with ILADS, it's not guaranteed that the doc knows what s/he is doing, but it's a good sign.  If the first referral name you get from ILADS is a doc that you don't click with, get another name and try again.

Also always get copies of ALL tests run on you.  Doc A may not see anything useful in a test, but when Doc B reads it, there may be a whole different point of view in play.

Best wishes, and let us know how you do, okay?

[amyech]

I have had tingly burning sensations mainly on my face tongue and lips...novocaine/sunburnt feelings... I have tested positive to the first part of lyme 1.2 ... I have just had the western blot awaiting results on that... Anybody know of any drs in Miami area that deal with lyme as my neurologist seems confused that the first part of test was high...He started me on Elavil but In haven't started it... thanks...

[Liz2323]

Can I just say that I am so glad I'm not alone on this?? I've been terrified that the constant burning sensations throughout my body are due to something more serious than Lyme, such as MS. I took about three months' worth of Doxy and I still have the burning. Maybe my symptms aren't so strange after all.

[JackieCalifornia]

Hi -- I saw your note to Jeff --

Are you pursuing Lyme treatment now?  To my knowledge, it's never too late.  Lyme is a stubborn customer, but worth getting rid of.  (Been there.)

If you'd like some suggestions on how to find an up-to-date doc in your area, please let us know and we'll give you some ideas.

J.

[karolh44]

Hi, So sorry you've been dealing with the symptoms for a year.  Would you believe I lived in Austin, TX, had a bulls eye rash and took three rounds of oral antibiotics and still kept getting sick, that was approximately 9 years ago.  I was tested for Lyme twice and came back negative.  Finally about 4 or 5 yrs ago I moved to Reston, VA and my knees were swollen and I could barely walk, I was probably 48 years old, too young for osteoarthritis.  Finally went to the right rheumatologist and told him I had been tested for Lyme twice.  He asked if my joint fluid had ever been tested and I said no.  He tested it and sure enough it came back positive.  Only problem is he didn't treat me long enough with IV antibiotics so I'm still getting sick off and on if I work too many hours or workout too vigorously.  You're lucky you're headed in the right direction so soon in your illness.  I sooo wish all this info had been out there for me so long ago.  I wish you the best and I'm sure you're going to be well before you know it.  Take care.