November 25, 2013 at 9:57 pm #307928
ItNovember 25, 2013 at 10:25 pm #370465MicheleParticipant
I was on AP about 5 years ago for RA and had similar issues. I herxed mightily on very small doses of antibiotics. (Minocyclince at the time.) I worked with Dr. S in Iowa. It was frustratingly horrible in that I couldn’t tolerate hardly a whiff of antibiotic and that I couldn’t tell a herx from disease. Like you, my initial docs did not find Lyme disease on their tests either. It wasn’t until I worked with a very specific LLMD that knew which tests to do that some major lyme coinfections turned up. My point here is don’t rule out lyme too quickly. It’s a complex of infections and testing is not great. The ELISA test is worthless. Western Blot is better but you have to consider whose definitions are being used to decipher the results of the test. For example, in Germany, two bands having positive markers is considered positive for lyme. In the US, five positive bands are CDC standard…and a joke.
Let me skip to the endstory quickly here. I no longer have joint pain, rarely muscle pain, very little fatigue. I still get headaches. It’s my nemesis right now. There is no doubt in my mind that most “autoimmune” dx are really a complex of problems that must be unraveled. (bacteria, molds, heavy metals, viruses) The body system needs to be detoxed. Perhaps people should start with detox before killing microbes. For me, once the LLMD supported my body and opened up my detoxification pathways I started to feel better. The pain is caused by an accumulation of neurotoxins. I have tested positive for mold sensitivities, heavy metals, parasites, mycoplasm, viruses, etc. It shut down my adrenals, thyroid, cortisol, etc. I do a lot of supplements which support my body’s specific needs and it seems to work. It’s mighty involved, but it works. (except for the headache…curse this headache!) 😉
When I feel my worst, I focus on multiple avenues of detox. I think Maz has posted a list on here of detox options. I do a minimum of five kinds of detoxification items daily. When I feel horrible, that increases and I pull out all the stops until I’m feeling better.
There are several tests that can determine how well your body detoxes. My doc used the Genova Diagnostics genetic testing. I have heard of other tests that are new. Your description of your reactions to antibiotics is a classic fit for having problems releasing toxins from your body. As you take more antibiotic, you create more toxins and have more pain.
It’s definitely possible to feel A LOT better and get your life back.
All the best,
MicheleNovember 25, 2013 at 10:47 pm #370466
Thanks so much for your post. In terms of Lyme testing, I went to a Dr. who IDecember 2, 2013 at 6:53 am #370467PhilCParticipant
In terms of Lyme testing, I went to a Dr. who I
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinDecember 5, 2013 at 7:28 am #370468April 21, 2014 at 12:20 pm #370469April 21, 2014 at 3:00 pm #370470
Hi A Friend,
Your points are completely valid; IApril 21, 2014 at 6:35 pm #370471
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