After living with a misdiagnosis of fibromyalgia for 3 and a half years, and constantly searching for more answers, I was tested for Lyme Disease by IGeneX in CA and the result was positive. The testing was covered by Medicare because I'm on SS disability but there are still some people, even some doctors I've been to, who don't believe the test is correct. It's not approved by the FDA but I don't trust the FDA anyway.

My regular doctor believes it's true and he put me on doxycycline for 5 months but it didn't help at all so we decided to stop it. I'm wondering what to do next and I know he's wondering too because I think he realizes it will never go away. I'm feeling weaker every day and I've already had bad reactions to so many antibiotics that I'm not sure an IV treatment would be even be a good idea.

My story is much longer but I'm tired, as usual, and I just wanted to ask if anyone can tell me what to expect in the future. If I just continue to take pain meds, which I can't live without, and do no more treatment of any kind, what can I expect to happen to me and when? It's been 4 yrs. now since I got sick, from what the doctors thought was a spider bite, so the Lyme went untreated for 3 and a half yrs. I'm 47, disabled, and feel like I'm ready to just give up. I guess I need some words of encouragement.

Thanks for listening. Dianne in PA (but I lived in southern VA when I got the "bite")

Hello lymed_in_va and welcome to NeuroTalk.

There is a forum for Lyme Disease but it doesn't appear to be very active however there is a "Sticky" a the top of the forum that has information that you may find helpful...........

This one has useful websites and resources.......
http://neurotalk.psychcentral.com/showthread.php?t=232

This is the link for the Lyme disease forum.........
http://neurotalk.psychcentral.com/forumdisplay.php?f=91

I'm sorry for your dx Dianne...welcome to NeuroTalk..I see that Snoopy has shown you the "way".

Hi Dianne and welcome

we have several members here who have Lyme disease and so I hope you will find the support and information to help you

Cheri

For some reason Lyme disease is the piriah of the medical system. I too, was bitten in 1994 and now have small fiber neuropathy which is very disabling. I have had many oral antibiotics over this period of time and to be honest, I don't think that it has provided me any relief. Some antibiotic regimens cause neuropathy, so, be careful with any one hawking treatment.

I don't think that they really know what the Bb organism is capable of. When researching Lyme disease you will find much more medical information if you research Borrelia Burgdorferi.

I know I had a tick bite, I got a classic EM and had a physician diagnose me. They drew blood and my titer was rising, but due to oral antibiotics 20 days worth of amox, my titer stopped climbing, which is what usually happens. I test negative now except with Igenex labs. Most facilities will not accept Igenex results. I am not sure why.

I can't say for sure if my Bb infection caused my current problems, but it isn't an answer for anyone. You generally get some oral antibiotics and a pat on the head. Lyme is not a fashionable disease to treat, and for some doctors it is down right career suicide.

I wish I had pursued aggressive IV treatment when I got the Lyme back in 1994 but I bought the line that the oral was enough. I do not believe in long term IV treatment. Their doesn't seem to be much benefit and people expose themselves to serious risk with PICC lines and heavy doses of meds. I do not believe in long term antibiotic treatment as it leads to poor absorption of nutrients from the intestines and there are many side effects. I do believe that the disease needs more research. I do not think they know enough about this organism which has dozens of other states such as blebs and cysts.

I will caution you about Flagyl or Metronidazole for treatment of 'cyst form' of Bb. It can cause neuropathy and you don't want that. Getting a diagnosis of Lyme disease is like opening a can of worms and many practioners will give it no credence whatsoever.

Also, a positive titer simply means you have produced antibodies to the germ. It does not mean the germ is active. You should have positive antibodies to any germ you had vaccinations for and any disease you have had. If you had a Hepatitis B vaccine you should have a positive titer and that is not treated. A positive titer of Bb does not mean you have active disease. Unfortunately, they really do not define what active Lyme disease is. If they can culture a live organism you are in luck. If not, you are called a post lyme, which doesn't get you much.

That said, varicella, or 'chicken pox' can live in your nerves and emerge 20 years later to produce shingles....medicine is not as knowledgeable as people think.

I was bitten by a tick a year ago and although I had very severe symptoms at the time (105 fever for 10 days and my limbs all curled up and were unusable), both my Western Blot and my Lyme Titre came back negative. My doctor said I must have had Ehrlichiosis because my Liver Enzymes went crazy and Ehrlichia attacks the Liver.

I took the 10 days of Dioxycyline and got over my fever and got the use of my limbs back. I haven't been right since. A year later, I've been diagnosed with Celiac Disease because the antibody test for gluten intolerance came back off the charts.

I have been adhering to a strict gluten free diet. I make all of my own food from scratch and I never eat out. The gluten related symptoms - abdominal swelling and abdominal pain - are gone. They are the only symptoms that are gone.

The problem is, all of my doctors seem to be ignoring my other symptoms. The ones that haven't gone away: numbness and tingling in my hands, feet and face, dizzy spells and light-headedness, tighness in my neck and throat, chest pains, chest tightness, heart palpitations (rare but when I get them its scary), trouble concentrating.

I read recently that many people positive for Lyme Disease develop Gluten sensitivity. I was bitten by a tick. I had the EM rash. I have had all of the short term and long term symptoms. It is because of deadbeat doctors that I am still struggling from day to day to live my life.

DON'T LET THE DOCTOR'S TELL YOU NO!! EVEN IF YOUR LYMES COME BACK NEGATIVE THERE ARE OTHER TESTS AND OTHER DOCTORS!!