Are there any threads here that show your protocol, and the protocols of other people that helped them, thx
Some of us have "dedicated threads" which discuss their initial and followup visits with an ME specialist, give their test results and subsequent treatment protocol. Others of us have spread our comments over many threads. This was my approach, as each patient is individual and no single protocol is going to be effective for all--so I have commented by subject in many threads.
After you have read the forum for a while you will see the members with "dedicated threads." I'll leave it to them to supply links, if they wish to.
For me, after an initial appointment and review of my medical records (I brought with me tests done by an autonomic specialist showing dysautonomia, and earlier systemic testing, heavy metal testing, gut testing etc.), my doctor ordered testing of:
The immune system (including immunophenotyping, the gut (DNA testing for about 67 bacteria), food sensitivity (US BioTek), pathogen testing (antibody, PCR, genetic sequencing for viruses, intracellular infections and other infections often found in ME patients), inflammatory cytokines and other markers of inflammation, extended CBC, specific endocrine testing, specific genetic testing (genes that are often found to have significant SNPs in ME patients and which would impact treatment), some specific tests that have been shown to reveal problems in ME patients--such as PrPc functioning, Elastase expression, Perforin mRNA expression, soluble CD14, C4A, total antioxidant capacity, a mold panel etc., etc.
My doctor reviewed all the test results (he has seen only ME patients for about 20 years and is one of the primary authors of both the ICC and the CCC). I was diagnosed by the ICC:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full
and he suggested an individual protocol to address lab findings and symptoms.
In the first phase of treatment he addressed my extreme imbalance of gut flora and several gut infections, prescribed GcMAF injections as testing showed that macrophage activation was partially blocked, other types of immune support (I had very dysfunctional immune test results), antivirals to address positive tests for viral infections, methylation support (I had brought with me a methylation panel showing partially blocked methylation) and treatment for systemic inflammation.
Later he began treatment for intracellular infections (Bartonella and Yersinia) and continues to adjust other medications and supplements according to further lab tests and symptom response.
I have had significant changes in both physical and cognitive function. I can now drive, do necessary shopping, read as long as I wish, walk for about 30 minutes, stand without medication for OI, handle an intense pilates class, and have been able to successfully take university courses. I could not do these things before treatment.
That's the short story!
Sushi