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]

Jeff,  

I replied to your earlier post yesterday --

It's really not a good idea to post your personal information on a message board like this.  It may even be against the rules here, not sure.  

Good luck!

[jeff4267]

Hi my name is Jeff R i need a llmd i have all the symptoms of lyme but have tested negative twice im suffering I live in West Warwick RI. im desperate been at this for at least a year Thank you Jeff R

[JackieCalifornia]

Hi -- glad you're formulating a game plan --

I'd suggest you start a new thread on this site, by clicking on an orange-brown button near the top of this page that says POST A QUESTION, and make the 'question' something like 'need LLMD near Chicago'.  That will get attention instead of being buried here at the bottom of an old thread.

Also I would try:
=========================================
1 -- Send an email to

                       contact [at] ILADS [dot] org

and tell them you are looking an LLMD near Chicago.  ILADS is Intl Lyme and Associated Disease Society, which is the main voluntary group for the more 'progressive' Lyme docs.

==========================================
2 -- Google/search for something like

                        Chicago Lyme
==========================================

You'll be amazed at the resources out there!  Let us know if you have any questions about what you find -- we're always happy to share our thoughts.

Best wishes to you -- keep us posted!

[rj1961]

Hi!  I think I may have this...I feel like this is the only place where I can find people describing my exact symptoms!  It's strange but I almost feel relieved right now.  I would be interested in knowing where I can be tested by someone who specializes in this.  I live right outside the Chicago area.  Thanks!

[Ricobord]

Two weeks will definitely not cure it. Even the overly rigid IDSA says three weeks (who h has a significant failure rate).  Test results are useless in the beginning because it takes the body 4+ weeks to crank out enough antibodies to show up on a test. She was right to diagnose on a bulls eye rash alone, as only Borrelia causes it.

You need more antibiotics, probably a few months worth now that it has had a couple months to re-establish itself. You need a new doctor. You will not change the mind of the one you have.  Go quickly...the longer you wait, the harder it is to get treatment and the harder it gets to treat.

[JackieCalifornia]

Welcome to MedHelp -- sorry to hear what you are going through.

It sounds like your doc followed the standard approach to Lyme:  it's hard to get and easy to cure with a couple weeks of antibiotics.  Unfortunately, that approach is (in my view and that of many others) seriously outdated information.

The test results are dodgy, never very precise, and a doc is supposed to use the tests as one clue, but not the deciding factor.

Also, 2 weeks doxy may not be enough, because Lyme has the ability to hide from antibiotics and usually needs longer treatment than most infections (with some exceptions:  standard treatment for tuberculosis is 18 months of antibiotics, so the long term treatment approach is hardly news.)

Also, your doc may not have tested you for other diseases the Lyme ticks often carry, called "co-infections."  There are several of these illnesses that need different testing and different treatment from Lyme, but regular docs usually don't think about that.

Your doc is following what many would say is an outdated approach.  Bottom line:  if you are still having symptoms, then you still have the bug.  Some docs call this 'postLyme syndrome', where they say you must be well but your body is just over reacting to a now cured infection.  Lyme does will tell you otherwise.

And importantly:  the sooner you are properly diagnosed and properly treated for the right length of time, the more likely you are to get fully well and to do so more quickly.

If you need help finding a Lyme specialist, let us know what area you live in and we can give you some ideas on how to approach the search.

Good for you for not just giving in to your doc's dismissive attitude!  Keep going till you get some real answers and real treatment, if that's what's needed.  Take care -- we're rooting for you.