In my last post, I raised the question whether chronic Lyme is often a false positive to re-activated EBV and/or CMV and/or other Herpes virus (due to microbiome shifts). I beleive that Post Infection Fatigue Syndrome is a better approach for treatment success. It is a question that needs to be asked if you have a chronic Lyme diagnosis.
- “False-positive results of serological tests for Lyme disease have been reported in cases of recent primary infection with varicella-zoster virus [1,2], Epstein-Barr virus [3,4], and cytomegalovirus . We report the first association of false-positive results of serological testing for Lyme disease with infection due to another of the herpesviruses, herpes simplex virus (HSV) type 2.” 
Reviewing PubMed, I found the following for your consideration
- “Post-treatment Lyme disease symptoms (PTLDS) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have several clinical features in common, including fatigue, musculoskeletal pain, and cognitive difficulties (Gaudino et al., 1997). Immunologic mechanisms have been suspected to play a role in both PTLDS and ME/CFS. However, biomarkers for the two conditions are currently lacking, creating a barrier to better understand them.” 
- Living in Limbo: Contested Narratives of Patients With Chronic Symptoms Following Lyme Disease. 
- “Six months after completion of therapy, Lyme disease patients were found to have 31 to 60% of their pathways in common with three different immune-mediated chronic diseases. No differential gene expression signature was observed between Lyme disease patients with resolved illness to those with persistent symptoms at 6 months post-treatment”  – this symptomless post treatment and persistent symptoms have the same gene expression — implying that it is not a persistent lyme bacteria!
- “The attribution of chronic, non-specific symptoms to “chronic Lyme disease”, in the absence of specific evidence of ongoing B. burgdorferi infection, is inappropriate and unfortunate, leading not only to unneeded treatment and its associated complications, but also to missed opportunities for more appropriate management of patients’ often disabling symptoms.” 
- “Lyme“: Chronic Fatigue Syndrome by Another Name? 
- Subjective health complaints are not associated with tick bites or antibodies to Borrelia burgdorferi sensu lato in blood donors in western Norway: a cross-sectional study. 
- “Patients with persistent symptoms possibly associated with Lyme disease often provide a challenge for clinicians. Recent studies have provided additional evidence that viable B. burgdorferi do not persist after conventional treatment with antimicrobials, indicating that ongoing symptoms in patients who received conventional treatment for Lyme disease should not be attributed to persistent active infection.” 
- Lyme Disease Diagnosed by Alternative Methods: A Phenotype Similar to That of Chronic Fatigue Syndrome. 
- ” When these symptoms occur in patients with Lyme disease, they typically also subside after antimicrobial treatment, although this may take time. Chronic fatigue states have been reported to occur following any number of infections, including Lyme disease. The mechanism underlying this association is unclear, although there is no evidence in any of these infections that these chronic post treatment symptoms are attributable to ongoing infection with B. burgdorferi or any other identified organism. Available appropriately controlled studies indicate that additional or prolonged courses of antimicrobial therapy do not benefit patients with a chronic fatigue-like state after appropriately treated Lyme disease.” 
- ” Data do not support the proposition that chronic, treatment-refractory infection with Borrelia burgdorferi is responsible for the many conditions that get labeled as chronic Lyme disease. Prolonged symptoms after successful treatment of Lyme disease are uncommon, but in rare cases may be severe. Prolonged courses of antibiotics neither prevent nor ameliorate these symptoms and are associated with considerable harm.” 
Many of researchers of the papers above were actively (optimistically!) looking for alternative evidence that Borrelia burgdorferi was still a player with Chronic Lyme. My read is simple, there is no clean evidence to deem Chronic Lyme to be different in any way the ME/CFS. Most people have had one or more herpes virus in their life, a virus that can be re-activated and result in (false-)positive lab report for the classic Lyme Tests.
The belief in chronic lyme, like that of Occult Infections (Jadin, Pasteur Institute in the 1950’s) were all reasonable beliefs to explain what was observed. The key word is were. In my humble opinion, a simpler explanation is just “post infection syndrome” (with the specific infection having little consequence for the syndrome). It is my belief, that post infection syndrome is a stable dysfunctional microbiome shift that results in similar chemicals being produced (causing the symptoms!!!) as when the infection was happening.
My wife just came in and said “But what about the family on … whose son had CFS for years, then got a Lyme diagnosis, was given antibiotics and recovered???!!!!” My answer, “That does not prove it was lyme, it only show that what ever caused “CFS/Chronic Lyme” was susceptible to the right antibiotics.” Antibiotics cause microbiome shifts — for the better or the worst, to sickness or health — with CFS, we have evidence of the shift of the microbiome and thus need to tailor antibiotics, herbal anti-bacterial, probiotics (which often produce antibiotics themselves!) to correct those shifts.
Is getting a Chronic Lyme diagnosis bad?
The answer is no – provided you can negotiate with your physician on which antibiotics to take. On my last remission, I knew what antibiotics I probably need to take — the problem is that with the concern over antibiotic-resistance, getting a physician to prescribe is almost impossible. Where I live, naturopathic physician have the right to prescribe. I found one that worked with a Lyme MD, Marty Ross, and she (Dr.Iller, ND) was open to following a Jadin-like protocol of rotating antibiotics — however, she wanted to test for Lyme because if positive, it provided protection for her prescribing antibiotics. In short, she and I were “working the system”. I was positive for Lyme according to the labs.
The first two were minocycline and doxycycline. The improvement accelerated when I add Neem and Tulsi capsules (which impacts the overgrowth families that the prior antibiotics do not impact).
Officially, she was prescribing appropriate antibiotics for Lyme. I just spun the choices to deal with the microbiome shift reported for CFS — a win-win. Who was right? It does not really matter because what was important was the remission.
One of my classic lab tests to indicate CFS
The patient in my prior post was very kind and forwarded their Vitamin D charts which are shown below. The classic fingerprint for CFS is high 1,25D — why is unclear. I suspect that it may be due to the dysfunction microbiome but I have not found any studies exploring that. Also note, that 1,25D can go up when 25D goes down.
- 25D is reserves — the amount of oil stored in refineries.
- 1,25D is active — the amount of pollution being produced by cars burning oil.
|Vitamin 25D||Vitamin 1-25D|
If you do not have high 1,25D and a normal SPECT scan — get a second (or third) opinion about whether you have CFS. IMHO, there is a good chance that you have another condition! See Lazy Diagnosis, You have Chronic Fatigue Syndrome.