I went on Doxy thirty days after I was bitten and continued on medication for the next five months. At that point my ID doctor pulled me off orals to see what would happen.
Four weeks later I developed symptoms again.
I then went on three months of IV ceftriaxone combined with minocycline.
I just came off that and I'm contiuning with the Mino although my doctor wants to try Planequil and Biaxin to treat an autoimmune reaction.
I've never tested positive for co-infections and my latest blood work showed no lyme antibodies although it did reveal continued vitamin depletion.
I'm still symptomatic, worse now since going off the the IV.
- Muscle aches - Muscle weakness, especially in the arms - Plantar Fascitiis, developed overnight. - Stiff neck - Numbness in the face - Swollen lymph nodes - Cognitive issues - Headaches
When I run it feels as if my muscles are already used up and they give out before my cardiovascular system has a chance.
Thoughts?
Thank you!
Posts: 146 | From Virginia | Registered: Mar 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Although your ID Dr sounds more open-minded than many, I think you should see a LLMD.
You definitely need an eval for coinfections. Most ticks do not just carry lyme.
The longer this goes on, the harder it will be to treat.
Please post on the Seeking a Doctor Board for a LLMD near you.
You need eval for Babesia, Bartonella, Ehrlichia, RMSF, etc.
Plus, you need an expert to decide what kind of lyme treatment you need at this point.
If you are still having symptoms, then don't delay....get to the absolute expert LLMD asap....please.
make sure you read......symptom list p 9-11, coinfection info p 22-27....
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
BABESIA
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Adding plaquenil and biaxin will go after the Lyme in a different sense. I'd try it. Good that he will keep treating you even if he's mistakingly calling it autoimmune. Perhaps his taking the autoimmune angle will make it so he continues open-ended treatment.
Coinfection tests are not accurate and don't test for all strains. I had a clear case of babesia and a not so clear case of bartonella that ended up responding well to bart treatment. I tested negative for both. You have to go by symptoms not tests.
Unfortunately, there is no test to see if the Lyme is still active. Antibody test will not show it. I still show IgG antibodies and I show no symptoms of Lyme at all and haven't for well over a year now. If you still have symptoms, you still have Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Thank you all, it looks like it's time to get that second opinion. My symptoms certainly don't tick off all the boxes for Babesia or Bartonella but I felt that there was enough overlap that it worth giving it a shot, even if my labs tested negative. When I went off IV my symptoms surged back in a matter of days so it can't be Lyme kicking me around.
Posts: 146 | From Virginia | Registered: Mar 2010
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
A good LLMd can clinically diagnose lyme and/or co-infections if the tests are negative. No test is 100% reliable. Igenex testing is the most reliable, but tick borne diseases should be clinically diagnosed by symptoms and treated.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic