It took a while for me to get back on my feet, to get mental stability (I was suicidal at the prospect of having MS) back before I started researching. I couldn't grasp what was wrong, so I went to the only "diagnosis" I had which was MS. On that site I found there are mimicking diseases of MS. I went to each of those websites, went through the symptoms & discovered the only one that hit on the symptoms I was having was Lyme. Now I had to research that & found blood work would rule Lyme out.

My family doc of 20 years cussed me out, told me the tests were expensive & not necessary & "You need to get your ass to the MS clinic & get on the drugs". I was angry, walked out on him & made a decision on my own. I would go to the local quick care clinic & find out if a doc there would draw blood for what I wanted it drawn for & send it to the lab I had found to be tops in Lyme testing (Igenex--they have a .com site). God was with me that day; a doc said yes.

I had previously called Igenex & found out the tests they recommended & the cost & that was the beginning. It took a month (late 2002)& the results were "Equivocal" meaning there was something found that wasn't strong enough to be positive, but not weak enough to be negative.

From there I asked a pharmacist if he knew of anyone who could test me for Lyme disease. This was just before I had the blood work done; he said he didn't know that info, but there were several people in our little town being treated for Lyme & gave me the name of a doc (LLMD actually)in the neighboring state of PA.

I called them & set up an appt after getting the blood work done. The appt was set for 1-1/2 months forward, so there would be enough time to get the test results back. I went for that appt, test in hand, & have never looked back. A few months back, a local LLMD who has just started her practice, had repeat blood work done; I'm now positive for Lyme. Antibiotic treatment brings that out for some reason.

I can tell you, from a story on a site I use to belong to, a woman from FL said a neighbor of a relative had ticks crawling up the side of their house. As gross as that sounds, she said the ticks were everywhere.

That woman had found a Lyme doctor (LLMD) in FL to treat her & you will get info to do the same. I can't remember the site where you go to find an LLMD, but I'm sure someone will be along to help you. If push comes to shove, start the process on your own.

Here is a site that will help you document any of the symptoms you have or did have (they come & go): scroll to 38 for the symptoms list....

http://www.wildernetwork.org/faq.html#faqmisdx

50 QUESTIONS AND ANSWERS

Keep in mind, symptoms are used to make the diagnosis, & the blood test results are only used as a backup of that diagnosis. The test results aren't used for the diagnosis at all. I know where Ocala is; my brother lives in Lakeland.

If no one has the site for LLMD's in Fl; I'll figure it out & get back to you. We won't leave you all alone, we'll do our best to help you. None of here are doctor's, so we can't make a diagnosis, but if you want to investigate further the possibility of Lyme, we'll all help as much as we can!!

Take care & stay tuned.....Ruth in WV

www.lymenet.org

Click on "Flash discussions", then "Seeking a doctor". You have to join the site in order to post; do that then you can ask if there is a Lyme doctor in FL.

They won't post the answer as all of us keep the names of our LLMD's secret. There are people out there who are out to discredit & get rid of Lyme doctors; it's a witch hunt!

Anyway, you'll be sent an email if you provide that when you sign up or a PM (private message) will be sent. Either way, if they have a list of doctor's names, it will be sent to you.

Ruth

I was diagnosed with so many things like fibromyalgia, CFS, lupus (never tested positive for it, though) and possible MS. With the fibro came the severe full body pain, fatigue, migraines, Raynaud's, TMJ, etc. I do have 3 types of neuropathy, arthritis and severe musculoskeletal issues (bulged disks, scoliosis, degenerative spine) which were all found through testing. The seizure, abnormal brain scan (that mysteriously got better), muscle atrophy, shaking and twitching along with the extreme weight loss, constant chills, etc. had doctors scratching their heads. Then I spoke with a woman in a guai protocol forum who had Lyme, and that stuck with me.

I had the bullseye rash 10 years ago. My doctor said it looked like Lyme but that I couldn't get it here. I was at the top of my game at work, had a new family, life was wonderful when all this hit. I lost it all (luckily, my family has stuck with me – I also have a wonderful, supportive husband - but it sure changed our lifestyle).

When I first got sick, finding an answer was number 1, but a close second was finding relief from pain. After searching for a year, I found a wonderful pain doc who treated me for 2 years. But you can’t treat pain here, so he retired and I’ve been referred twice since then. My current pain doc is now going into practice alone and no longer wants to do medication management – he will go broke doing it – and wants me to find someone else. If I get the cortisone injections, I can stay…but I can’t do that!!!

So, I am also searching for a pain management physician. Many do not take insurance, just like the LLMDs (my current one is the first who has taken my insurance and I don’t want to lose him, despite the lousy treatment he has given me). I may not be able to afford to have my pain treated anymore.

Another way to find an LLMD is through the Lyme Disease Association Doctor Referral page, http://www.lymediseaseassociation.org/referral/.

It is so hard to get anything done at all when all you feel like is crashing. But we keep each other going.

Lori

i, too, believe that i was misdiagnosed with ms. i live right at the edge of the mountains in california and los vegas. i go out for hikes and walks a lot which makes me think something bit me.

plus, i never had any symptoms of ms except for in the past month in a half. yes, my mri showed 3 lesions, but no old lesions, and not plaque.

my spinal tap showed 5 IGg bands which is also found in lyme. it also showed oligloclonal bands -- which is sometimes found in lyme disease, but mostly found in ms.

i think i am the exception and i am a lyme victim with ocg bands. right before i got numb on my left side, i

had a fever, horrible headache, and my whole body ached.

i had night sweats too.

i was put on the solumedral and treated like an ms patient. but i insisted on getting the antibiotics for lyme too.

it's been 2.5 weeks since i've been on the antibiotics --

since taking them, my headaches, fevers, and night sweats are gone. still, i am told that i must take the

avonex every week for the rest of my life : (/

is there a way to confirm i have lyme? is there any

doctor anyone can recommend for lyme in southern california.

i read that even mosquitos can give someone lyme --

i've been bitten by so many mosquitos.

I'm sure you'll be pleased to know that we've started a TMJ support Group.

check it out - http://www.mdjunction.com/tmj

I've gotten to the point, if an LLMD prescribes something that has nothing to do with Lyme, then I don't get it filled. The same goes with any other doc who doesn't have a clue about Lyme. Excuse me, but I live with this body 24/7 so I think I know better than you what's going on with it. Needless to say, most doctors hate me; hey who cares!!!

Avonex the rest of your life; if you're not sure it's MS, if you feel in your gut it isn't, if you have test results that point to Lyme, then I'd say dodn't take the Avonex & see how you do. If you get better without it, then it's not MS. True MS patients will NOT get better using abx (antibiotics). That's the one way LLMD's know for sure they're dealing with Lyme instead of the dxed(diagnosed) MS.

If you haven't found it yet, here's the site for CA & in my opinion, it seems like a very good site; I've read it several times. If anyone could point you in the direction of a SoCal LLMD, this group could.

http://www.lymedisease.org/

No one can say for sure if you have Lyme or not; Lyme mimics so many diseases & the tests for Lyme are not great. With that said, I personally feel, as do many othes, Igenex in Palo Alto, Ca is the best lab for testing Lyme. www.igenex.com

For all those who say you can't trust Igenex because they only send out positive results, well here's a big ole to them.

My first test was Equivocal (basically means maybe), my 2nd test a few years later was a very big Positive (the abx possibly kicked in my immune system) & the one I had just a few mths ago was a resoundidng Negative. Igenex has proven themselves & for all those who don't trust them, that's fine go somewhere else & get your negative & take drugs for a disease you don't have. That sounds rude, brash or whatever you want to call it, but I'm tired of all those people saying don't go here or there but come at you time & again with questions about what's wrong with them. If you don't trust the lab I'm telling you about, then why are you asking me what's wrong with you? It's a personal issue; I've talked to a lot of people over the years.

One little footnote: I've been off all abx for 6 mths now & feel great. I feel I'm done with this after 5 long years. However, it needs said, I never had any co-infections. I'm sure treatment would still be on going if I had. I've tested neg for co's & never had symptoms related to any of them. So, cross your fingers as mine are, I'm done with this crap. A big ole to those docs who said it was MS & wanted me to take the drugs for the same.

Take care, good luck with your treatment. Ruth in WV

Post edited by: RuthH, at: 08/14/2008 11:13