Lyme or immune issue?

[ScoobsterSnacks]

I have been tested multiple times for lyme but the tests come back negative. I had this pressure in feet, chest, upper spine and tingling in feet. Now I have neuropathy in feet, muscle twitches, rib pains and it feels like a slow meningitis. If not lyme any other ideas? normal cmp, clean emg/ncv, esr and csr, thyriod, b12, liver and kidney function normal.

[JackieCalifornia]

[continued from the previous post]

Some (many?) Lyme docs don't accept insurance, because the controversy about Lyme has lined up the insurance companies to deny the prevalence and serious nature of Lyme.  My LLMD would give me a bill, I would pay the bill, and then submit my payment for reimbursement by my insurance company.  Oddly enough, there was no hassle from my ins. co. -- so why wouldn't the ins. co. pay the LLMD directly instead of paying me?  To save face.  Again, the politics of Lyme.  

Your symptoms sound like they line up with Lyme and possible co-infections, but it takes a knowledgeable LLMD to make an accurate diagnosis and chart a treatment plan for you.  No one here is medically trained that I know of, but we're glad to share with you what we have learned from dancing with Lyme ourselves.  

Treatment is over a period of months, not weeks, because Lyme bacteria have the ability to hide in the body, and also because the Lyme bacteria have an exceptionally long reproductive cycle -- and it is when the bacterial cell wall is disrupted when dividing and reproducing that the bacteria are most susceptible to being killed.  This is another reason why the supposedly standard 'couple of weeks of doxycycline' treatment doesn't work except VERY early after the infection occurs, but many of us never saw the tick that bit us or had a rash (I sure didn't, and neither did someone else in my family, but we were definitely infected).  So be patient.

So-called mainstream medicine just doesn't get all this, and if you get a couple weeks of doxycycline and still have the same symptoms as before treatment, nonLLMDs will say it's just 'post-Lyme syndrome', in which your body is over-reacting to bacteria that are no longer there.  Uh, no.  What it means is that the diagnosis may well have missed one or more co-infections, or that treatment was not long enough or with the right meds.  Lyme treatment is not weeks:  it is months.  

ILADS  [dot]  org, on its website, has medical and scientific explanation for all this if you are interested, including essays under Dr Burrascano's Treatment Guidelines.  He is one of the great Lyme docs, and while the guidelines are aimed at MDs, they are readable and helpful if you're up for it.

Also consider reading the book 'Cure Unknown' (now in paperback), by Pamela Weintraub, about the mess the medical profession has made of Lyme.  The title is unfortunate, because Lyme IS curable with the right antibiotics, and I think she is implying that the 'cure' that is needed is for the stubborn blindness of much of the medical community.  I am now some ~5 years post-treatment for Lyme and babesiosis, and remain very healthy (knock wood), as does another family member, so we're living proof that Lyme IS curable.  

... and if it turns out that you DON'T have Lyme, an LLMD will be first to tell you and can likely help you figure out what you DO have.

Let us know how we can help and also how you do -- best wishes!

[JackieCalifornia]

Welcome -- sorry to hear you are still having symptoms.  There's a split in the medical community about how to diagnose and treat Lyme disease (and also about other infections that the 'Lyme' ticks carry about half the time).

The tests you were probably given are Western blot and/or ELISA.  If you do not have copies of the actual test results, call the doc and get full copies, and begin keeping your own file or binder with ALL your test results going forward.  Docs' offices don't like spending money or time copying stuff for patients, so be persistent and remind them whenever you ask for copies that it be *complete* copies of all tests and not just summaries.  

Here's the reason:  these two tests are not very reliable, but many in the medical profession rely on them.  I went through 20 MDs before I finally got a diagnosis of Lyme and a co-infection (one of several 'bonus' diseases the so-called 'Lyme' ticks often carry, about half the time).  The doc handed me the positive test results, and said, "But you can't possibly have Lyme.  I have patients with Lyme, and they are all ... near death."  

Uplifting, eh?  Lyme doesn't usually kill its patients, but this just shows how clueless many docs are about Lyme.  There are many many docs who take this approach, using outmoded tests (Western blot and ELISA) and not believing the tests when they ARE positive.

The split in the medical community continues today.  The problem with the Western blot and ELISA tests is that they look for the response of your immune system against Lyme, but the Lyme bacteria have the ability to *suppress* your immune system, so that the W.blot and ELISA tests can be negative but you can indeed be infected.  Or, like the first doc I saw, who said that my test was positive, but it must be an error because I didn't look sick enough.  Brilliant, eh.

There are other docs (my heroes!) who think bigger thoughts and use different tests which look for Lyme bacteria DNA in your blood, which is a direct test and does not rely on your potentially compromised immune system's reaction.  The test is called a PCR (polymerase chain reaction) test, offered by IGeneX Laboratories.  Docs who think these bigger thoughts about Lyme are (for convenience) called by us patients 'LLMDs' -- shorthand for 'Lyme-literate medical doctor.'  It's not a degree or a credential -- it's just a handy tag we patients use to mark docs who really understand Lyme and how to diagnose and treat it.  

LLMDs can be of any specialty or none (mine happened to be an immunologist), because what matters is their level of understanding about Lyme.  Oddly enough, infectious disease docs and rheumatologists are two specialties that in particular are *not* inclined to understand Lyme.

This split in the medical community has been going on for quite a while, and the battle is not over yet.  When my 20th doc handed me my positive Lyme results but said they must be incorrect, I knew it was serious, because an old friend from some years ago had had Lyme, so I said thank you to Doc #20 and immediately found an LLMD to review the test results and take it from there.

So.  Finding a Lyme doc who understands all this is what I would do in your situation.  You can start by posting a new message here, with a title of something like "Need LLMD near [Bangor] Maine" or whatever city or area is near you.  

You may then receive a reply from other posters here who have a recommendation, likely as a private message through this system.  (Look at the blue bar at the top of this page, and if there is  'My Med Help (1)' at the top of this page, you'll know you have a message from someone through this site.  Click through.  

The reason for all the secrecy is that in too many states, LLMDs have to practice very quietly to avoid hassle from the state and medical boards for treating Lyme too aggressively.  Lyme is treated with antibiotics, but usually for a period of months, not weeks, and nonLLMDs don't understand that.  

I just searched online for

                          -- lyme disease Maine --

and got some good links, including one group called

                          -- MaineLyme [dot] org --.

It has a list of other groups in Maine that can likely help you find a Lyme specialist nearby.

And a third option is to send an email to

                        -- contact  [at]  ILADS   [dot]   org --

and tell them generally where you live ('near Bangor, Maine'), and they can send you names of local LLMDs.  There is no test to become an LLMD, and you still need to keep your antennae up till you are comfortable that the LLMD knows what she/he is doing, because some of the docs are a little far out there.  

I know, this is all very strange, but the medical profession still hasn't caught up with Mother Nature regarding Lyme and its co-infections.  First is getting diagnosed properly, to know whether you have Lyme and whether you have any other infections ('co-infections') carried by the same ticks.  Then your Lyme doc will review the test results with you and lay out a treatment plan (usually antibiotics of various kinds, tho some people use herbal treatment or Rife machines or other approaches; antibiotics worked fine for me).  

Keep in mind that there is NOT one single list of symptoms that everyone has -- that is due, I think, to the additional symptoms you get with any co-infections (of which there are several), and also due to how the Lyme bacteria are attacking the body -- some of us have more muscular discomfort, some of us have 'brain fog' that messes with cognition (thinking and memory) -- it's different for everyone.  That's one reason the nonLLMD docs are so confused:  the different presentations the infections have.  So don't worry if you hear or read that others have different symptoms from you.  It's just the way it is.  (Lyme bacteria are in the same family as syphilis, which in the old days was called 'the great imitator' because it presented symptoms so variable among different patients.  Ditto for Lyme.)

[see second part of this post in the following message]

[JackieCalifornia]

Welcome -- I started a detailed answer to your post, but it's late and I'm fried from a long week.  Will finish and post tomorrow.  Hang on!