A thirty seven year old female presented for an evaluation at the end of 2010. She had previously been in good health until 18 months before the visit. She had been diagnosed with chronic fatigue syndrome and fibromyalgia by several other doctors. She had been informed that blood tests, including a Lyme test, had all been normal. She had recently moved back to Maryland from North Carolina. She had previous lived in Maryland 2007 to the beginning of 2009.
Her symptoms had included: fatigue, swollen glands, joint pain and swelling, headaches, nausea, vertigo, blurred vision, dizziness, loss of balance, facial twitches, tremor, memory loss, decreased appetite, muscle cramps, abdominal pain, flulike symptoms, night sweats, shortness of breath, numbness and tingling, disorientation, confusion, poor cognitive processing, random lactation, hot flashes and chills.
She is not an outdoor person although she has had many cats. She does recall walking barefoot through tall grasses on several occasions. There is no history of tick bite. There is no history of an EM (bulls eye) rash.
After 6 months of treatment, including 5 months of Rocephin she is feeling reasonably well. She is still weak but has good endurance. The fatigue is all but gone. Cognitive problems have largely resolved. Muscles pains are gone. Overall, she is about 80% better.
Response to antibiotics is extremely variable amongst patients. Currently the combination of Tindamax and Levaquin have been very effective. The addition of Cortef seems to have been very helpful.
I would like to suggest that I(we) frequently do not know what we are really treating. We do not have a microsopic view of tissues, the immunological responses, microbiological responses or cellular functions.
For example. From many quarters it would be assumed that I am treating Lyme, Bartonella and adrenal fatigue. Perhaps this is mostly wrong.
Regarding Lyme, we have no data regarding microbial resistance. A patient yesterday asked me if Lyme is a "super bug." Actually a good question. We know Lyme has a complex genome and we know Lyme should have the ability to develop drug resistance. Super bugs like MRSA and VRE have evolved the ability to resist multiple antibiotics. Efflux pumps within the bacteria pump out antibiotics of differing classes rendering these antibiotics to be ineffective.
Perhaps Levaquin works, and/or Tindamax, because the offending germs have not developed resistance to these antibiotics.
And Cortef. Treating adrenal fatigue? Maybe not. Patients with treatment refractory Lyme may have very high levels of cytokines such as IL6 and TNF alpha. These are potent mediators of inflammation. It is well know that one of the ways Lyme makes people so ill is because it causes excessive inflammatory reactions. Steroids are the best way to tamp down these excessive immunological responses.
I really started writing this blog because of the patients measurable immune responses to the germ. Currently, the standard WB shows no reactivity but the C6 peptide, 1.55, is positive for the first time. The WB sent to Stony Brook showed only 41 IgM and IgG bands. One year ago, a Labcorp WB was positive for IgG bands (4/10) 66,58,41 and 28 and IgM band 23. Six months prior to that, Labcorp found IgG bands (3/10) 66,58 and 41 and a positive IgM (2/3) 39 and 41. Previous C6 peptides had been 0.4 and 0.7.
It shows that either the tests are completely unreliable or that immune responses are extemely variable over time. Maybe some of both.