Tuesday, October 13, 2015

New Lyme disease center at Spaulding treats lingering symptoms (Boston)

Reprinted from the Boston Globe
By Kay Lazar GLOBE STAFF  OCTOBER 12, 2015



Oct 12, 2015


Spaulding Rehabilitation Hospital
300 1st Ave
CharlestownMA 02129
Attn: Dr. Nevena Zubcevik


Dear Dr Zubcevik,


Thank you for your involvement with Lyme patients and lingering symptoms at the Spaulding Rehabilitation Hospital. I think everyone who sees these patients will agree that Lyme is not your average "nuisance disease" and until we have lab tests to gauge treatment failure or success, Lyme patients around the globe will continue to suffer with little or no treatment options.


Our family had a prolonged exposure to the Lyme bacterium before diagnosis so we missed the narrow window of opportunity for successful short term treatment. I suspect it was a twelve year exposure for me before diagnosis and perhaps four years for my daughter. There are no treatment guidelines for this class of patient and most who went this long are usually incapacitated. When finally diagnosed in the fall of 2008 I was bedridden, on oxygen and nearly died.


As far as objective signs of disease both my daughter and I currently have reactivated Epstein Barr virus which may offer an explanation for the daily bouts of exhaustion that I still experience requiring that I nap frequently. (Mononucleosis has been labeled the sleeping sickness) My daughter's CD57 NK levels are very low (16, reference range: 60-360) as is her IgA levels. She is also testing positive to the B19 Parvovirus. It has been recommended that she see an immunologist and undergo IVIG therapy for her immune dysfunction. It would appear that our immune systems have been compromised allowing these viruses to remain active. The stimulants Vyvanse for ADD and Provigil that my daughter has been prescribed allow her to work but without these amphetamines she does not function well at all. A recent cold turned into yet another sinus infection and she experiences recurrent yeast infections.


It has been suggested that Lyme is immunosuppressive causing a post-sepsis like immunosuppression:  (AIDS-like disease)


Dormant viruses re-emerge in patients with lingering sepsis, signaling immune suppression
June 11, 2014


Sepsis-induced immunosuppression: from cellular dysfunctions to immunotherapy.



NEW, by the NIH:  "Surviving Sepsis: Detection and Treatment Advances"
By Carolyn Beans for the National Institutes of Health   |   August 18, 2014 08:43am ET 
Preventing Secondary Infections

"Some people who survive sepsis can develop secondary infections days or even months later. A research team that included Richard Hotchkiss, Jonathan Green and Gregory Storch of Washington University School of Medicine in St. Louis suspected that this is because sepsis might cause lasting damage to the immune system. To test this hypothesis, the scientists compared viral activation in people with sepsis, other critically ill people and healthy individuals. The researchers looked for viruses like Epstein-Barr and herpes simplex that are often dormant in healthy people but can reactivate in those with suppressed immune systems. [Sepsis Has Long-Term Impact for Older Adults, Study Finds]"


Lyme disease subverts immune system, prevents future protection
July 2, 2015
"The bacteria that cause Lyme disease are able to trick an animal's immune system into not launching a full-blown immune response or developing lasting immunity to the disease, report researchers at the University of CaliforniaDavis."




Per the following study, reactivated Epstein Barr was cleared after anti-malarial treatment:


PLoS One. 2011;6(10):e26266. doi: 10.1371/journal.pone.0026266. Epub 2011 Oct 24.
Effect of acute Plasmodium falciparum malaria on reactivation and shedding of the eight human herpes viruses.

Author information

 1Department of Microbiology Tumor and Cell Biology (MTC), Karolinska Institutet, Stockholm,     



Human herpes viruses (HHVs) are widely distributed pathogens. In immuno-competent individuals their clinical outcomes are generally benign but in immuno-compromised hosts, primary infection or extensive viral reactivation can lead to critical diseases. Plasmodium falciparum malaria profoundly affects the host immune system. In this retrospective study, we evaluated the direct effect of acute P. falciparum infection on reactivation and shedding of all known human herpes viruses (HSV-1, HSV-2, VZV, EBV, CMV, HHV-6, HHV-7, HHV-8). We monitored their presence by real time PCR in plasma and saliva of Ugandan children with malaria at the day of admission to the hospital (day-0) and 14 days later (after treatment), or in children with mild infections unrelated to malaria. For each child screened in this study, at least one type of HHV was detected in the saliva. HHV-7 and HHV-6 were detected in more than 70% of the samples and CMV in approximately half. HSV-1, HSV-2, VZV and HHV-8 were detected at lower frequency. During salivary shedding the highest mean viral load was observed for HSV-1 followed by EBV, HHV-7, HHV-6, CMV and HHV-8. After anti-malarial treatment the salivary HSV-1 levels were profoundly diminished or totally cleared. Similarly, four children with malaria had high levels of circulating EBV at day-0, levels that were cleared after anti-malarial treatment confirming the association between P. falciparum infection and EBV reactivation. This study shows that acute P. falciparum infection can contribute to EBV reactivation in the blood and HSV-1 reactivation in the oral cavity. Taken together our results call for further studies investigating the potential clinical implications of HHVs reactivation in children suffering from malaria.


So what is my point to all this you might ask?


It is quite possible that reactivated viruses found in Post-Treatment Lyme Disease Syndrome are actually an indirect marker for persistent Borrelia infection.


Respectfully submitted,


Carl Tuttle
HudsonNH 03051




The Tuttle family was featured on New Hampshire Chronicle's "Living with Lyme" with the program archived on their site in six small segments for viewing on the computer


1 comment:

  1. thanks for post! that new center sounds so very promising for us late stagers!!!


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