A few questions

I have been told for the last 2 years I have fibromyalgia. I have posted here a few times and wanted to ask a couple of questions. I know with fibro people say they feel "sick". I feel like this alot. I have a 24 hr sick virus feeling, esp. if I get overheated with activity. I was bit by a tick back in the mid 90's and developed the bulls eye rash and was put on antibiotics for 2 weeks. Never looked back until I started having fibro symptoms in the last few years. Does anyone with lymes ever get this "sick" feeling that comes and goes? I do have pain all over in my muscles and esp around the joint area and have several other symptoms along with fibro. I also have tendor points all over too. What is the fine line in determining the difference between fibro and lymes? My md said my symptoms do not sound like lymes, we have only tested a few times and it was negative. I am now trying to save money for a test from Igenex, but I don't know which one to get and would like to know if someone could tell me the one I need. I am so tired of feeling sick. It may be fibro and not lymes, but what if it is and I can get it treated?

Thank you for any help and advise.

Karen

Hi, Klambert1, welcome to the forum! Sad to say I've heard your story a million times before - I actually lived it, too!

I'd been sick with something no one could really diagnose since I was 10 - no one put two and two together that it started after a tick bite until I was 16, diagnosed, and treated with Lyme. After a few months of no progress, I was sent for a second opinion before insurance would approve further treatment, and I got sucked into the world of infectious disease specialists, and was told that I didn't have Lyme anymore. Like so many, I believed them - I assumed this "specialist" must be trustworthy. So I kept searching for answers. Spent a few years being treated for chronic fatigue syndrome - with a little progress here and there but I never got back to normal. Then it was fibromyalgia - again, nothing really helped.

It all actually started falling into place that it was Lyme when I had all of these "isolated" extra symptoms that didn't fit into the fibro bubble - and I felt what you're describing, that general SICK feeling. I knew it couldn't all be coincidental - so I found myself an LLMD and have finally been progressing ever since.

Of course no one here can tell you for sure if you have Lyme, but your symptoms and exposure are one giant red flag! Anyone but a LLMD (Lyme literate) is going to follow the IDSA guidelines for Lyme - which basically say that it's really not a serious disease at all and is always cured within a few weeks of treatment with a single antibiotics, without regard to coinfections, or the fact that testing is highly inaccurate.

Fibromyalgia is one of those things that can't really be specifically diagnosed - they don't really know what causes it, and a lot of people with Lyme consider fibromyalgia a symptom of tick-borne illness, and not a syndrome in and of itself. I would definitely recommend finding an LLMD - it's your best bet to figure this thing out and get the treatment you need, if it is in fact Lyme. Sorry for the long-winded response!

Best of luck!

Thanks for all of your help! Yes I do need help finding a LLMD. I am located in Virginia. Does most LLMD take insurance? I know that the test would cost around 500 for me to order and take. I would rather see a specialist. If anyone knows of a MD around my area please let me know.

Thanks so much
Karen

skBM,
How do I get treated for lymes without positive blood diagnosis? I'm positive then I would have to see a LLMD for sure then and not my regular md?

The thing to keep in mind is that even with sensitive testing like through IGenex, you are not guaranteed 100% accuracy. I don't know the exact likelihood of a test being correct or not, but I do know that many people go through the entire course of treatment, and get better, without ever having a positive test. I think, like skBM was saying, your best bet is to go directly to an LLMD, who is likely to order the same tests you're looking into, but is also knowledgable enough to know how/if to treat you clinically if you don't test positive. Some doctors will begin treatment before ever seeing test results, based on clinical presentation, as, if it is Lyme - which sounds pretty likely in your case, though I'm not a doctor - the benefits of beginning treatment ASAP outweigh the risks of unnecessary treatment.

My LLMD does not take insurance, and I think the general consensus is that most typically don't, however if you've got good insurance they will usually reimburse you for quite a bit (mine reimburses my doctor visits 100%, thankfully). I'm not familiar with any doctors in your area - you may want to post a new thread titled something like "looking for LLMD in virginia (or a more specific location)" to see if anyone can offer suggestions.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
phassan@optonline.net

If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html