Went to the eye doc yesterday and MRI today, doc called this afternoon...

I am praying for you.
Try not to stress, I know easier said then done.
The Drs seem to be on top of things for you. I hope they keep it up.
Yes keep us posted, I will be looking for them.
Make sure to do the same for yourself this holiday weekend.

Fibronana-I will say a prayer that you will also be comforted. I know the health problems are not fun. I am on coumadin now, small attack 2 yrs. Ago and history of clots. Gene clotting disorder found. Send angels her way!

I'm adding you to the prayer list. Sorry you are going through this rough patch, but I'm happy to read the doctors are being so thorough in checking things out. I hope you get some answers -- and relief -- soon. Big hugs in the meantime.

Thanks everyone for your thoughts and prayers.

bcb1200, I have been tested for lyme and found negative. I've been told by several people who have lyme that they believe that is what I have.

I am also making an appt with my PCP and discussing further testing for the lyme and also having her check my hormones..

thanks again for all your prayers...

have a wonderful holiday weekend.

Jerrie

Hi FibroNana.

I'm happy to provide you with some additional information if you are interested. Based on my personal experience with an original Fibro diagnosis that turned out with lyme, and the experience of dozens of other people who I've met, I do believe that many times "Fibromyalgia" is really undiagnosed / misdiagnosed lyme. You would not believe how many in the lyme community originally were given a Fibromyalgia diagnosis (either that or they were told their symptoms were all in their head.)

Anyway..it isn't surprising that your original test was negative. Mine was too. Unfortunately, the blood tests for lyme disease are just not specific enough. The current "mainstream" test consists of a two tiered system. You have an ELISA blood test first. If that is positive, they move on to a Western Blot test to confirm. Many people test negative on the Elisa. (I did and was told "no..you don't have lyme.) THe Elisa misses upwards of 70% of cases. For those 30% that do test positive...many fail the confirmation Western Blot.

Pam Weintraub's 2008 Novel "Cure Unknown" (available on Amazon) helps explain why the tests are so poor. Basically it goes back to the mid 1980's when there were efforts to develop a lyme vaccine. A commission of doctors decided to exclude certain highly specific bands from being reported on the tests because they felt, once the vaccine was released, that it would cause a lot of positives. So..they "dumbed down" the standard commercial test and took out some of the most lyme specific bands...so a lot of people test negative when they are in fact infected. In addition...lyme attacks the immune system, specifically the Natural Killer cells. So..for someone who has had it for a while, their immune system is pretty screwed up and they are not even producing antibodies for lyme anymore. In the lyme community, it is often said that the worst off people are the ones who never test positive. At the end of the day, the CDC admits that lyme is a clinical diagnosis and tests are used to help support (but not prove) the diagnosis.

I'm sorry to say that your PCP will be useless in diagnosing you. This is because lyme is a highly controversial disease. There are currently 2 camps in the medical community. The "Mainstream" view from most doctors is one that is sponsored by the Infections Diseases Society of America (IDSA.) They published the national guidelines for lyme disease which basically states the tests are accurate and if you do get lyme, it is easily treated with 2-4 weeks of antibiotics. They also say that chronic lyme doesn't exist and if people are still sick after the 2-4 weeks treatment then they don't have lyme but instead have some sort of somatoform disorder. (i.e. blame the patient.)

The second camp is the ILADS camp. ILADS is the International Lyme and Associated Diseases Society. It is a rapidly growing group of doctors and researchers who believe that lyme (and related co-infections: Babesia, Bartonella, Rocky Mountain Spotted Fever, Anaplasmosis, XMRV, etc) can persist in the body, evade tests, and require long term, often open ended therapy. ILADS "Lyme Literate MD's" (LLMD's) are up to date on the latest research in lyme disease. They know the tests are poor, and know which tests are the most accurate.

From my experience...if you have been given a Fibro diagnosis, you should at least rule out the possibility of lyme with an ILADS trained LLMD. Your PCP won't be able to help you..but an LLMD can. YOu can find an ILADS trained LLMD by contacting ILADS, the Lyme Disease Association, or Lymenet's Flash Discussions.

If you want additional resources, I recommend the following:

-Download and Read Dr. Burrascano's treatment guidelines. This is the "bible" of lyme disease treatment. Dr. B's protocols have helped cure thousands. Check out the full symptom list. How many do you have?? Check out his treatment suggestions, testing methods, etc. I have met dozens with "Fibro" who have been CURED with a Burrascano protocol. I'm currently on one and am 95% improved. http://ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

-Watch the 2009 Oscar-nominated documentary called "Cure Unknown". This film focuses on the lyme controversy in the USA. You follow numerous patients as they work their way through the maze of going from doctor to doctor, test to test, being told they have Fibro, CFS, MS, ALS, etc, and then finally finding out it is lyme. The film also discusses WHY lyme is controversial. It interviews several well known LLMD's. Every "Fibro" patient that I have talked to really identifies with the film. Clips / trailers are on youtube. The film itself can be viewed on Netflix, iTunes, or On-Demand on most cable systems.

-Read "Cure Unknown" by Pam Weintraub. Pam is a 25 year medical / science journalist whose whole family came down with lyme in the mid 1990's. They were told for years their problems were all in their head, or Fibro, etc, and it was really lyme. They are well today after getting proper treatment...but Pam helps explain why lyme is so difficult to diagnos, etc.

-In terms of testing..the ONLY test in the USA that is remotely sensitive is a Western Blot test from IGENEX. www.igenex.com They report all of the lyme-specific bands that others don't report. They will send you a free test kit. You just need to get a doctor to sign and get blood drawn. They accept credit cards for the test. Most LLMD's use IGENEX.

Anyway...I know there are some on this site who are happy with their Fibro diagnosis. If so, then please disregard. But for those of you who would like to at least rule out lyme as a possibility for the root of your Fibro symptoms, then the info above will help. Lymenet is also a good resource. You will see a lot of people on the boards there who were originally diagnosed with Fibro...some for over a decade..and it was really lyme all along. The symptoms of chronic lyme and Fibro are EXACTLY the same.

I.D docs are no help with lyme. find an LLMD!

I would be totally excited if I found out what would/could cure whatever it is that I may have, be it lymes, fibro, MS, CFS......etc,etc.

Now having said that I would like you all to know that I am doing all I can to be proactive in my own care, as I am sure all you on this forum are.

Now the reason for my post. I have had the western blot test twice. And, both times it was negative. I have been on clyndomyacin 20 days straight along with another very strong antibiotic. And guess what? I still have fibro and I do not have lymes.

My mother passed from ALS and I do not appreciate the fact that you believe she would have been cured by a simple antibiotic. I understand that you were cured and you feel 95% better, some days I do to. But, I come to this site to get encouragement, helpful hints, suggestions, ideas, etc etc on my FIBROMYALGIA and do not appreciate having to be constantly bombarded by your "LYMES CURES".

Now please do not get upset by this. I am sure we would feel the same way if someone came here and constantly touted their cure for cancer, obesity, diabetes...etc, etc.

If you really want to talk about fibro then I would listen and help if I could. If you want to talk about Lymes disease could you please take it to the lyme forum?

I sincerely hope that I am not overstepping boundaries but I am losing interest with this forum because too many people that should be on the lymes site are here and with every conversation we are subjected to their very lengthy opinion.

Thank you Sherrine.

Sorry I got a bit testy.

FibroNana - this sounds like a scary time for you, but you will get through it and find the answers you need.

You are in my thoughts and prayers. Please keep up updated.

Please keep us posted on your condition. I know this has got to be scary. I will pray for you.
Marilyn