maybe somebody may have some insight into this... - Lyme Disease Message Board

my3sons2001 · 07-17-2002, 02:49 PM

Hi everybody this is my very first post here so please bear with me.

Way back in 1990 I was visiting West Virginia with a few friends and upon returning I started to feel ill, like I had the flu. Then a small red rash appeared on my wrist under my watch. I worked for a doctor at the time and he ordered some blood work which came back positive for lymes. He started me on a course of Tetracycline and then retested me. The blood work came back negative and was told I no longer had lymes and there was no need to see a specialist. Fast forward to present. I am not 31 years old and for the past 8 or so years I have had a great deal of difficulty sleeping, I have wide spread pain. I basically hurt from head to toe. I have headaches, dizziness, constant ringing in the ears, IBS, heaviness in both legs with some tingling and numbness, my left arm goes numb from the shoulder down and the right only in the hand, I have very little endurance, my thinking is cloudy, poor memory, palpatations, shortness of breath, elevated liver function tests (for over a year) but no one can figure out why. I have been diagnosed with Fibromyalgia but am not sure if I believe that. Nobody seems interested in checking in to the Lymes disease possibility because my SED RATE is normal.

Do these symptoms seem to fit the Lymes puzzle? Any suggestions for anything else would be welcome.

I should add that I was in a bad accident approximately 8years ago also. Only got whiplash.
Any thoughts??

Thankyou

Renee

lunank22 · 08-06-2002, 02:27 PM

I must tell you that it really bothers me to know that doctors, especially those who are supposed to be the really smart, on the edge doctors can be so ignorant. I can tell you for sure that you still have Lyme's. Most likely you were not on the right medication the first time around and did not completely kill of the disease. Since Lyme's is a spirochete, it has life cycles, and when not every spirochete is killed off it replicates itself to come back to haunt you. I am not surprised that your recent tests came back negative because conventional tests do not test your titers that will tell you if you have it or not. The conventional tests test your metabolites and lyme will only show up in an active cycle. But Lyme is not always active, it has dormant periods. It is mostly dormant when it is cold, and it is highly triggered by the heat. Not only that, but it can manifest itself to appear like one may have Fibromyalgia, chronic fatigue, depression, ringing in the ears, MS, lupus, arthritis, vertigo, and severe allergies, amongst a slew of other things. I'd suggest you to call a great doctor I know who can help you find your answers. The number is [removed]
and the doctor is Susan Marra ND. She is in SW connecticut. Good luck with everything.

[Please read and follow the board posting guidelines.
Discuss doctors by name/city/state only. No phone numbers.]

[This message has been edited by moderator2 (edited 02-07-2003).]

kky · 08-07-2002, 10:58 AM

I had to reply to your post b/c I could not believe what I just read!

My family and I have been having trouble the last year. (see kky 6/4/02 post) I also have been diagnosed with IBS and had an elevated liver function (which the doctor told me was Gilbert's disease - although I had never had yellowish eyes and high liver before). My son had an elevated sed rate, but the pediatrician acted as though that didn't mean anything. Everything you mentioned - numbness down the arms, pains down the legs, shortness of stamina, overall weakness and soreness, stiff neck and back pain, dizziness etc.. - my son and I are both having it too, and even when I asked the doctor to test for lyme, he said it wasn't necessary. When I mentioned that I was experiencing occasional mood swings and differing sleep patterns, he suggested anti-depressants!

Reading your message gives me the confidence that something is definitely physically wrong and to find a doctor who is willing to do more tests. I hope things are looking up for you and I wish you the best of luck.
Worried Mom (also 31)