Starting treatment for Lyme

Discussion in 'Fibromyalgia Main Forum' started by jbennett2, Sep 14, 2005.

  1. jbennett2

    jbennett2 New Member

    Well, I saw my LLMD today and he gave me a clinical diagnosis of Lyme. I didn't have enough of the bands for the CBC designation, but I had enough that he is convinced I have it. I am on two different antibiotics Clarithromyacin and Vibramycin, and a anti-malarial Plaquenil that they also use to treat lupus. I am not looking forward to the herxing!

    After doing a lot of research, there is a large school of thought there that believe that there are many, many untreated Lyme patients out there that are told they have fibro, cfs, or even MS. Scary to think, isnt' it?

    Wish me luck with my new drug regimen - I also have to stay out of direct sunlight, which will be very hard for me because I CRAVE sunshine!
  2. jbennett2

    jbennett2 New Member

  3. pumpkinpatch

    pumpkinpatch New Member

    Be very careful in the sun! I even got burnt in the shade on the antibiotics. I looked like rudolph!!

    Cindy
  4. KJ2003

    KJ2003 New Member

    Hi JBennett,

    I'm a promotions director at a cluster of radio stations and, earlier today, I was working on a barter for Hall and Oates tickets and came across their website.

    On the blog part of the site, Darryl Hall gives a rather detailed account of his illness and diagnosis of Lyme disease.

    Thought you might be interested! Just do a yahoo search on Hall and Oates. You'll find the site easily.

    Chin up,

    Kim
  5. lbconstable

    lbconstable New Member

    Good Luck with your treatment!

    I will be starting Vibramycin very soon also. I'm taking it to treat mycoplasma.

    My MD has me taking it 3 days a week. I can't remember the dosage. I'll be picking up the script tomorrow.

    Are you taking it daily? And at what dosage? Interesting that you'll be taking two abx at one time.

    I'll be interested to know how it goes for you!

    Laurie
  6. jbennett2

    jbennett2 New Member

    I am taking it(vibramyacin) daily. Don't know the dosage because I haven't picked it up yet - they had to order it

    He wanted to put me on Biaxim but because I have GERD, it is suggested not to use that one.
  7. sickasadog

    sickasadog New Member

    JB-

    Just curious... do the drs still feel you have CFS or that the CFS was caused by the lyme? I was recently diagnosed with late stage neuro lyme aftet years of a CFs/FM diagnosis. My LLMD said that my lyme was the cause of the CFS and that the FM is secondary. He also said the lyme caused alot of the other stuff that was misinterpreted as CFS, such as suppressed immune system, reactivated infecctins, heavy metals, thyroid disease, etc.

    I am glad you are on the road to recovery. Take care!

    SD
  8. redsox10

    redsox10 New Member

    Good luck. My daughter was diagnosed with Lyme in Nov. She has been sick for almost 3 years with CFS. She is making some very slow progress. Remember to drink lots of fluids espically if herxing.
  9. jbennett2

    jbennett2 New Member

    as I knew that there are different theories. I have FM, not CFS. Someone on the Lyme board told me that once the Lyme was gone, so was the FM. I sure hope that proves to be true.

    The vibramyacin I take is 100mg. twice daily.
  10. jarjar

    jarjar New Member

    There are probably a huge amount of people on this board that have Lyme which is causing there cfs or fibro. Not everyone but a large amount. I stongly urge those that have been ill for a long period to get the Igenex western blot test to confirm if they have Lyme. You can even go their web site and they will mail a kit for you to take to your Dr. Do the research you find out it can remain dormant for years then pop up. A large amount of people who have lymes don't even remember being bitten by a tick. Research it and you will see CFS and LYMEs have the
    same symptoms.
  11. jbennett2

    jbennett2 New Member

    As I mentioned before, I also belong to Lymenet. There was quite a discussion a few weeks back about Igenex and if there were ANY Lyme tests that they did that came out negative. If I recall, none had

    My doc used Stonybrook in NY
  12. jarjar

    jarjar New Member

    I have read on this website and its in the history of many people coming back with negative results from Igenex. The Igenex arguement has already been talked about on this website so I don't care to continue it.
  13. sickasadog

    sickasadog New Member

    BTW- most of the people I know with Lyme will not ever go back to stonybrook for treatment due to horrible experiences!!!!

    Also, remember, lyme is a clinical dx, so even w/out a positive result, you can still be dx'd.