Archive for the ‘Clinic’ Category

Dr. Zubcevik Challenges TBI Standard of Care

http://www.mvtimes.com/2016/07/13/visiting-physician-sheds-new-light-lyme-disease/

Dr. Nevena Zubcevik, attending physician at Harvard Medical School and co-director of Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital, http://spauldingrehab.org/research-and-clinical-trials/lyme-disease/, recently spoke at a weekly meeting of clinicians, which was open to the public at Martha’s Vineyard Hospital.

In standing room only, Zubcevic admonished that singer/actor Kris Kristofferson’s recent cure of dementia, once diagnosed and properly treated for Lyme Disease, should be a lesson for medical professionals.  https://madisonarealymesupportgroup.com/2016/06/09/alzheimers-byproduct-of-infection/.  She also stated that children present differently than adults, with headache being the most common symptom but to get them tested if they are acting out, experiencing mood issues, irritability, and fatigue.  (They need to be tested; however, with sensitive testing that Lyme Literate Doctors – LLMD’s use.  One lab that offers these tests is Igenex Labs in CA.  The best way to get good information is to contact a Lyme Support Group in your state.  They have all the information regarding LLMD’s, testing, costs, and educational materials.)

She explained of a haunting case of a young male institutionalized for schizophrenia. After proper testing for Lyme Disease, he started daily antibiotics and within six months he was normal.

For more information on how borrelia, the causative agent of Lyme Disease, and various coinfections can and often do affect the brain see: https://madisonarealymesupportgroup.com/2015/10/18/psychiatric-lymemsids/ .  Also, see Amy Hilfiger’s story: https://madisonarealymesupportgroup.com/2016/07/01/ally-hilfiger-on-fox-5-ny/, as well as how Toxoplasmosis can affect the brain: https://madisonarealymesupportgroup.com/2016/05/21/toxoplasmosis/.

She also debunked myths.

*Studies show you can get Anaplasmosis in 15 minutes from tick attachment, 10 minutes for Powassan virus, and that it is UNKNOWN how long it takes for the various strains of borrelia (LD). https://www.youtube.com/watch?v=296pVc5Zbxw&index=2&list=UUTXTo-yWGZkRwrQ9X6X7E0A

*Doxycycline CAN be given to children, infants, and pregnant women.
http://www.ncbi.nlm.nih.gov/pubmed/26680308  (no correlation between the use of doxycycline and teratogenic effects during pregnancy or dental staining in children was found)

*A two-day course of Doxy has little to no prophylactic value, and that the proper course is 100-200mg twice a day for 20 days, regardless of engorgement time.

*The current testing misses 69 out of 100 patients who have LD, and doesn’t pick up borrelia miyamotoi at all, not to mention other strains. Miyamotoi is prevalent in Massachusetts.

*The “classic” bullseye rash only happens 20% of the time and when it does present can look like a spider bite or bruise.

*Patients often have coinfections which tests do not pick up. These coinfections make patient cases extremely difficult and complex.

She also stated that borrelia can go into tissue, travel in the bloodstream and is twice the speed of a white blood cell which means it can swim against the flow of blood and evade the white cell by quickly burrowing into tissue, thereby avoiding the immune system.

She stated that having LD is a body-wide toxic war – leaving the patient feeling miserable, and that while she is fairly new to this field, she sees no controversy – that animal studies clearly show persistence after treatment and that human tests do too.

She mentions the work of Dr. Ying Zhang of Johns Hopkins Lyme Center and that his work has indicated that current treatments may not clear persisters. Due to this research she feels a combination of several antibiotics, particularly new combinations, are promising.

Zubcevik found that a patient with chronic LD, when given a PET scan, showed blue and purple, indicating atrophy, whereas after six months of IV antibiotics, presented with yellow and green, indicating metabolically active regions.

Zubcevik has patients who have been ignored, beaten down, and who have lost the will to live. They show signs of post-traumatic stress and have destroyed marriages often leaving them alone. They break down crying with she tells them she believes them.

Boston Hospital – Treating the Whole MSIDS Patient

http://up.anv.bz/latest/anvload.html?key=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“>http://up.anv.bz/latest/anvload.html?key=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

Lyme Center Opens

https://www.bostonglobe.com/metro/2015/10/11/for-lyme-disease-patients-new-approach-aims-ease-residual-effects/Dzq8hZni6BoBiKZ99eq20O/story.html

A new Lyme Center has opened at Spaulding Rehabilitation Hospital in Boston and offers free mental health counseling due to the generosity of Brandi and Chris Dean.  Dean, herself diagnosed with Lyme Disease, went through the many cognitive issues common to many and intimately experienced grief as a support group leader due to Lyme-driven suicides.

The Center will also support research including a pilot study to test whether a mild electrical current in the brain, now used for stroke and brain injured patients, might improve the many cognitive issues Lyme patients have.

The center has occupational therapists, infectious disease experts, mental health counselors, brain researchers and other professionals to treat patients whose illness persists despite antibiotic treatment.

The two specialists who direct the center are “pushing past the debate” of the schism of belief in the medical community because they’ve “encountered too many patients who simply need help.”

So far, health insurance companies have covered most services at Spaulding.

3-D Presentation of MSIDS

https://player.vimeo.com/video/37137701“>http://

Excellent video put out by Envita Medical Center.  While I definitely believe in a comprehensive treatment plan, I’m not endorsing Envita or any other clinic.  Please read reviews and do your own research.  I will state unequivocally that we are desperate patients.  I assure you there is no magic bullet. Absolutely NO MAGIC BULLET.  I often tell people that MSIDS needs everything AND the kitchen sink!  Our immune systems are different and we are infected with different pathogens.  Some have been ill longer than others.  The longer you are infected, the deeper and wider the pathogens have burrowed.  And remember, “If any treatment seems too good to be true, it probably is!”