Resource Research of Dr. Alan MacDonald, pathologist, Harvard Brain Bank

[Merida]

As a result of being diagnosed with late stage Lyme ( from a tick bite in 2010/Virginia) I have listened to the entire NorVect conference (2014) and to the videos of Dr. Alan MacDonald. His understanding and research scope of the potential of Borrelia to wreak havoc in all parts of the human body is profound.

His fluorescent DNA probes have shown Borrelia DNA in brain nerve cell cytoplasm and in the mysterious amyloid plaques of Alzheimer's patients ( dxed by Harvard docs) who died.
Just last year he found a tiny parasitic worm ( neural larval migrans) in the spinal fluids of deceased M.S. patients. Additionally, inside the worms are Borrelia organisms. They co-exist as endosymbionts, and even exchange DNA.

Borrelia DNA was even found in cancerous brain tumor tissue - of the same type of cancer that killed Senator Edward Kennedy.

Currently it is appreciated that ticks are an important vector of both Borrelia and the parasitic worms. But I expect new research will uncover new vectors and other ways that these organisms are transmitted.

I am a California resident, but got Borrelia from ONE tick bite in 2010 while visiting Manassas Battlefield, Virginia. I had a slight, funny semicircular rash. My infectious disease doc here did a screening for Lyme in 2010, but it was done too early after infection. Now, I have 5 positive bands in the IgG immunoglobulin studies - fitting the CDC criteria. The point is : Borrelia ( and coinfections) are easily acquired, easily missed on laboratory tests even by infectious disease docs. Watch Dr. MacDonald's presentations on You Tube.

 

[Farmgirl]

This is so interesting and frightening! Have any of you read the book Brain on Fire? I am just now watching lectures on parasite cleansing. Autism One has some lectures on this subject that make a lot of sense.

 

[Farmgirl]

@Merida. How can you tell the difference between ME and Lyme's in your body...or is it all the same? What is a treatment that really works?

I

 

[Merida]

@Farmgirl
I keep reminding myself that all of these names we are given ( M.E., Fibromyalgia, SEIDS, CFS) just describe a set of symptoms. Lyme disease is caused by a specific bacteria in the genus Borrelia. It looks like there is more than one species that us causing a problem.

But the symptoms of people diagnosed with Lyme/ Borrelia can be identical to those of CFS/ ME. There is a specific blood serology test - Western Blot for Borrelia - that came up positive for me. Done by Lab Corp. But I understand that this test has many false negatives. Plus, coinfections with Babesia, Bartonella, and more may be present and not picked up on the Borrelia Western Blot.

I tried to post a video by Dr. Richard Horowitz, "Why Can't We Get Better? " 2015, and failedBut go to You Tube and search for this. It will come right up.

The experts say that Lyme/ Borrelia is a clinical diagnosis. Horowitz mentions these points that indicate Lyme disease:
1. Good/bad days ( sometimes a 4 week cycle)
2. Migrating joint/ nerve pain
3. painful eye syndromes
4. Lyme mimics all psychiatric disorders
5. Hormonal cycles can influence symptoms
6. There are many, many other symptoms: dysautonomia, heart problems, kidney issues, hormonal imbalances, sleep disturbances, concentration problems, vasculitis, severe fatigue, and more. A real quagmire.

So, Lyme / Borrelia is a complex illness that certainly has symptom overlap with what is being called " M.E./ CFS/ FM . It seems that it takes a real Lyme/ Borrelia expert to appreciate who may benefit from treatment.

If you have ever been bitten by a tick ( but many people get bitten and are unaware) keep looking at these videos. This is all new to me as of 2 months ago.

 

[Merida]

One more point: I have had CFS since an injury in 1998. However, in the last 4 years I have had new symptoms - known tick bite with rash was 2010. New symptoms: severe sweating/ hot episodes, diastolic heart dysfunction ( some heart pain?), kidney disease in left kidney only, very erratic blood pressure - high spikes when standing, constant hunger - even during the night.

So this is quite confusing.

 

[Farmgirl]

@Merida Thanks for your sharing your life here. I appreciate the ideas. You are a gem.

 

[Farmgirl]

One more point: I have had CFS since an injury in 1998. However, in the last 4 years I have had new symptoms - known tick bite with rash was 2010. New symptoms: severe sweating/ hot episodes, diastolic heart dysfunction ( some heart pain?), kidney disease in left kidney only, very erratic blood pressure - high spikes when standing, constant hunger - even during the night.

So this is quite confusing.

@Merida Hi. I am sorry you have so much to deal with! Did you have some cardiac testing done? My heart has been bothering me a lot for years, but recently is bothering me (pain) all the time now. My doctor is going to run some tests soon. My doctor said the AV's are supposed to help the cardiac issues.

I get my Igenex Lyme's test done soon. Pretty sure I am going to end up on Doxy or Minocyline soon. My dermatologist says I have an ongoing internal bacterial infection. he wants me on them, too. I am not a big fan of using medications like these, but I don't feel I have a choice.

I DID have a deer tick attached to me 3 days in 2012 and 2 weeks antibiotics. So, we'll see what that shows.

Oh, well, I still have something to be happy about! I have a cute little dog that loves me, a great husband and great kids. (not particularly in that order) :-D Our son is in college, but lives at home and regularly gets things for me when I am stuck in bed. This is something to be thankful for!

 

[Merida]

@Farmgirl
Please keep everyone informed of your results. I just haven't been well enough to respond much. I was having neck problems from picking up grandkids, went to my (great ) sacroocciptal chiropractor( since 2002) to see if he could help. He tried to adjust my neck and it wouldn't adjust. Neck work is always tricky. So, I immediately got much worse : weakness in legs and arms, bowel function shut down, bladder pain, headache, pain behind eyes, tremor on right side returned, blurry vision, electrical sensations all over body when lying down.

So, the point is: structure is important. The possibility of Lyme Borrelia is important. Are Lyme people susceptible due to structural issues, and poor blood/ CSF flow? Or do we have some inherited immune differences? Wow. Who can even answer these questions???

Hugs. Glad your son is in college and pretty self sufficient. Yes, there are many things to be grateful for - plenty to eat, clean water, soft bed.

 

[Merida]

@Farmgirl
One more thing - after the neck 'adjustment' I also had erratic heart beat. So, again, when the upper neck is involved, anything can and does happen.