Most recently, I would like to thank TreePatrol, TinCup and RecipeGirl.

I have been ill since July of 2002 starting with a fever and malaise. Shortly after, a tooth abcess. So that must have caused those symptoms? Then muscle spasms of the right arm resulting in a frozen shoulder. Doc agreed and asked "What do you want me to do for You?", no Tx except Motrin.

A couple months later, severe vertigo, visual disturbances, brain fog, photophobia etc.etc.etc.. New Doc.

I switched MDs after no blood work, no treatment other than Antivert, Antidepressants, and two weeks of antibiotics.

January 2004, I could no longer make the drive to work or function. No sense paying COBRA for this network of docs. Bedbound for the most part for three months.

A friend mentioned that my symptoms sounded like another person's that was dx with Lyme.
Now I remember the tick. The research began, I found you guys (Thank God), symptoms checklists etc..

A new doc, now private pay. I heard those words echoed throughout the office and waiting room numerous times.

I finally get in, went through my list of symptoms, history of removing a tick in 2002, and was asked, "So what do you think is wrong with you?" I said Lyme. The response was "We don't treat that here".

Denied for health insurance due to diagnosis of Asthma, but could reapply in a year.HA

Now insured under my husband's insurance. Just got married. New Doc. Finally CBC, RPR, Thyroid studies, Lyme Titre, Chemistry Profile, ANA, Rheumatoid Factor. I get a call five days later, all normal except for Lyme, 1.2. Western Blot ordered. Doc said I need IV Rocephin as most symptoms are neurological.

I got the "Good News" yesterday, "All bands negative".
I questioned the Doc prior to bloodwork re: my self medicating with antibiotics and then questioned how long my blood sat before WB. I figure about five days.

I am new to this insurance and planning on appt. with an LLMD but would appreciate any responses or e-mails.

Oh, I live in the Pocono Mountains and the last Doc said he only saw one true case of Lyme in twenty years. I said maybe because they don't test for it.
Thanks To ALL of you ready to help someone in need.

You need to have your labs sent to Igenex...if you haven't. A negative from them is no guarantee either.

If you've had Lyme a while your body is too run down to produce antibodies for the test to work. A short treatment of abx helps sometimes.

I don't think 5 days is too long. I think Igenex wants their blood in 5 day or something like that. Correct me if I'm wrong.

Welcome to Lymenet. We're very glad to help you find answers so you can get your life back.

Sorry you've been having such a rough
time with no real answers yet. You have really been through a lot.

You've started a whole new life since getting married so I know you want to get well fast.

You mentioned an infected tooth. My LLMD told me that Lyme Disease can very well infect root canaled teeth.

Generally speaking, Lyme travels to the weakest part of your body & sets up residence.

Lyme disease can do anything it wants and that's why it's called the great imitator.

You may already know from your research that the Lyme diagnosis is based on symptoms.

There is no test that will diagnose Lyme 100% of the time.

If you happened to have had a Bulls eye rash, then that is the diagnostic sign for Lyme Disease-----You have Lyme Disease.

However, a physician has to verify the rash & record this in your medical record.

If you later develop a Bulls eye rash, take a picture of it & keep it forever.

Most folks don't ever have a rash or don't remember one, but you can still have Lyme Disease.

It sounds like you had a positive ELISA test for Lyme, but Lyme Literate Medical Doctors (LLMD) don't rely on that test.

LLMDs will only use testing to back up a clinical diagnosis. Again, the diagnosis is made after a history is taken & a physical examination is performed.

Many LLMDs order Western Blots from IGENEX Labs in California. IGENEX will provide you with the necessary paper work & medical codes so you can file for reimbursement from your insurance.

Even if the Western Blot test is negative, you can still have a raging Lyme infection.

It depends on your LLMD, but some give 14 days of antibiotics prior to IGENEX testing & some do not.

Lyme is a deep tissue infection & some believe the antibiotics will elicit a positive test.

There are many reasons for a negative Western Blot. Your body may have already formed immune complexes to the Lyme bacteria.

If that is the case, then there are no free Lyme specific antibodies that show up in the blood.

Some of the sickest patients have negative Western Blot tests.

Lyme testing is complex, but even testing at IGENEX you can still get a test with no Lyme specific bands--a negative test.

The LLMD will understand this.

He will also want to check you for symptoms of tick born co-infections such as Babesia, Erlichiosis and Bartonella.

Sooner or later these must be addressed as many have silent co-infections. Many of the symptoms overlap with Lyme-----so it's very hard to distinguish between them.

Only an LLMD can tell you for sure if you have Lyme.

Here is a Lymenet link provided by Tincup that will make learning about Lyme a bit easier:

http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

I believe there is a section in that link that explains Lyme tests in more detail.

We've all learned firsthand how important it is to get to the root cause of our symptoms.

I saw that you posted in Seeking a Doctor for an LLMD near you.

If you indeed have Lyme, finding that doctor is the most important thing you can do to preserve your future.

Please, let us know if you still can't locate an LLMD.

Try not to worry about the Lab tests. Once you see your new LLMD, you'll be able to get the answers you've deserved to have for over 2 years now.

I can share your frustration because I've had a similar situation this winter and finally found a LLMD in Flemington, NJ which isn't too far from you. There is also a Tick Borne Disease Center in Phillipsburg- they are big advocates for i.v. abx. versus oral abx.

I've been tested twice by my LLMD for lyme and both times it came up equivocal, but he is treating me based upon the symptoms that I've been having. He's very informed, takes time to listen and worth the drive if you can make it. Just drop me an email if you want his name and number.

I completely understand your frustration and I hope you're feeling better soon!

There are several llmds down here in Chester county. You can e-mail me if you haven't gotten their info already.

How ya doing?