I posted awhile ago about testing positive for Lymes. My dr said that I did have all the symptoms of Lupus going back as far as 4 years ago but since I tested for lymes I had to treat for it (4 years ago I had a false positive for lymes). I have finished my 21 days of Doxy antibiotic treatment and I have noticed that nothing has changed. I still have all the same symptoms that I had prior to the treatment. I have to go back to Dr on Tuesday and I am so nervous and confused. I was hoping I had lymes so that I could be cured and finally feel better. After stopping the treatment I am sad that I still feel sick. The other day I went to an outdoor event with my parents and I could barely walk around because my joints ached so bad but I did what I always do ignore it, not complain and go about my day(of course somed days is easier than others.
Anyways I just wanted to post because this forum is really the only place I feel understands. Hopefully I can get answers on Tuesday.
I sympathize with you deeply because I too have both lupus and Lyme disease. I just had to jump in here to address two things you said in your post that stood out to me (with bright red flashing lights!):
1. You say you had a "false" positive for Lyme disease 4 years ago. Why do you think it was a false positive? I'm not a doctor, but just the fact you have Lyme now makes me think that it probably WASN'T a false positive 4 years ago. I've had Lyme disease for over 7 years for sure, since I don't know when I was bitten I'm not sure just how long. I've heard of people who've had it for decades before they were actually diagnosed. Lyme is NOTORIOUSLY difficult to diagnose.
2. You say you finished 21 days of doxycycline. Did someone (mistakenly) tell you that 21 days of antibiotics would completely get rid of Lyme disease? Because unless you take doxy within the first couple of weeks after being bitten, you will likely need more than one single course of antibiotics to get Lyme under control. You can't eradicate it, just beat it down to the point where your own body's defenses can deal with it.
Most people with Lyme that I know about
required many, many
months of antibiotics to make any progress, and doxy is just the beginning. My sister-in-law took various antibiotics for 18 months before her Lyme was in remission.
I was just diagnosed with Lyme in January. I took doxy for 2 months, then switched to zithromax, added Alinia and Mepron (because the tick that bit me also gave me Babesia), then did IV Rocephin for 7 weeks (until I ran out of money....my insurance wouldn't cover it). I actually finally started to feel better on IV Rocephin (my brain fog even got better!!) but I can't afford it right now so I'm taking Suprax (one of the oral versions).
Here's a link to a very inspiring story of a woman who got 100% well on IV Rocephin, it took at least 9 months; she was extremely ill from Lyme, near death actually, and many of her worst symptoms were neurological (Lyme in the brain is the worst, and that's my problem too):www.lymeneteurope.org/forum/viewtopic.php?f=10&t=157
Well, the LymeNet Europe forum where Sarah's story is posted seems to be unavailable right now but maybe it will be up later....?
Another helpful place to go is www.lymenet.org/
Anyway, I'm currently taking Suprax, zithromax, Alinia, and Mepron TOO....4 antibiotics simultaneously! And this is not at all unusual for people who have Lyme disease!! Naturally I have to take lots of probiotics too!
Is your doctor a Lyme-Literate doctor (aka LLMD)? If not, please, for your own sake, try to find a doctor who is an *expert* on Lyme disease. Please be aware that the need for long-term antibiotics has become a political issue in the medical community, even though studies have proven time and time again that most people don't get well on 21 - 30 days of antibiotics.
The people in the Lyme disease forum here on Healing Well will help you, and they will answer questions. There's a GREAT bunch of people on the Lyme forum, just as the people here in the lupus forum are a wonderful group too! I hang out in multiple forums on Healing Well because I have so many autoimmune diseases (Lyme disease triggered at least 3 of them plus my fibromyalgia).
Anyway, this is a really long post (because my heart really goes out to you!) and if you want to email me privately to hear more, please feel free to do so. I hope at least some of this is helpful to you. You will be in my thoughts and prayers!
Lyme Disease, Babesiosis, Ehrlichiosis, Bartonella, EBV, CMV, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, IV Rocephin, Alinia, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAPautoimmunediseasesgfliving.blogspot.com
Post Edited (nasalady) : 9/11/2010 5:38:52 PM (GMT-6)