I am currently at a complete level of confusion regarding Lyme and hoping someone can help make a little sense of it all. I was diagnosed a year ago with Lyme disease - I found the tick and started showing symptoms within a month. Tested positive and started 10 day course of Doxy. With further research, I was unsure this was adequate treatment and went to an infectious disease specialist. Was put on Doxy for 2 weeks, but had increasing joint pain so was switched to Ceftraxione (IV) for a month. Most symptoms subsided except joint pain. Tested negative for rheumatoid arthritis. Doctor presumed Lyme was gone. I have had joint pain for a year which is now increasing, have started getting headaches again, lethargy increasing. Additionally, 6 months ago I began having problems with my digestive system. After undergoing an endoscopy, various blood tests, I have a sensitivity to gluten that was never present before. With all that said, my question is with such aggressive treatment and finding it so early, is it possible this is still the Lyme disease? Can the gluten intolerance be related to it? If I get tested for Lyme, will the test show positive from having it a year ago or will it be an accurate show of exactly what is in my system currently? Any help would be appreciated.
Posted by dmc (Member # 5102) on :
Breaking up so we can read...just making smaller paragraphs.
I am currently at a complete level of confusion regarding Lyme and hoping someone can help make a little sense of it all.
I was diagnosed a year ago with Lyme disease - I found the tick and started showing symptoms within a month.
Tested positive and started 10 day course of Doxy. With further research, I was unsure this was adequate treatment and went to an infectious disease specialist.
Was put on Doxy for 2 weeks, but had increasing joint pain so was switched to Ceftraxione (IV) for a month. Most symptoms subsided except joint pain.
Tested negative for rheumatoid arthritis. Doctor presumed Lyme was gone. I have had joint pain for a year which is now increasing, have started getting headaches again, lethargy increasing. Additionally, 6 months ago I began having problems with my digestive system.
After undergoing an endoscopy, various blood tests, I have a sensitivity to gluten that was never present before.
With all that said, my question is with such aggressive treatment and finding it so early, is it possible this is still the Lyme disease? Can the gluten intolerance be related to it?
If I get tested for Lyme, will the test show positive from having it a year ago or will it be an accurate show of exactly what is in my system currently?
Any help would be appreciated.
Posted by Lymetoo (Member # 743) on :
YES, it's still Lyme. (IMHO) Your treatment was NOT that aggressive. If you had any symptoms at all after the IV, then you needed to continue treatment.
However, sometimes the symptoms WILL be "gone" .. only to return later.
Lyme is very difficult to kill out.
and yes, the gluten issue is connected. Infections can cause this to happen. Did with me.
Yes, the Western Blot test would be as accurate as it can be. Lyme testing in general is not the end-all, however. A good evaluation by an LLMD is what you need.
Get a test thru Igenex Lab .. www.igenex.com You need test #188 and 189.
Please post a request in Seeking a Doctor here and someone will give you names of Lyme specialists in your area.
print out green booklet from http://lymepa.org explains the tick diseases.
Your dosages may have been too low for any theraputic benefit.
Posted by t9im (Member # 25489) on :
Hi Manderson:
Unfortunately your treatment was not that agressive and the infectious disease MD is really not the one to go to.
We learned this the hard way with our daughter and wasted 4+ months with a pediatric infectious disease specialist. He insisted our daughter didn't have lyme and actually never ran a western blot or tests for co infections.
You need to do the following: 1 - Read Dr. B's Advanced Topic's in Lyme Disease (as you need to start preparing yourself to manage this as you can't rely on the typical MD's). 2) Go the the seeking a MD board and find a LLMD in your area and set up an appointment.
3) To the extent possible have blood work done not by the LLMD as this may not be covered by insurance.
4) When the Western Blot is run insist on the bands in advance or the normal labs won't provide the detail. Its best to have IgeneX run the WB as they include 2 lyme specific bands the CDC excludes.
Good luck and while I'm not a MD it sure sounds like you have Lyme and a co infection.
Posted by manderson7185 (Member # 27787) on :
I don't remember if I was tested for a coinfection at the time. Maybe Rocky Mountain fever - if so, it was negative. The lymapa.org book listing symptoms really got to me. I have had so many of those things going on and I never would have attributed it to Lyme. I literally thought I was developing an eating disorder which was bewildering to me. I did post to the seeking MD board, but would like to also request here if anyone is aware of a LLMD in Pennsylvania.
Posted by Lymetoo (Member # 743) on :
Very important link found at the top of all the topics here:
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