posted
As some of you may know hubby recently saw a new neurologist and had multiple ER visits and a 3 day hospitalization in the last 2 weeks.
The hospital and ER docs are definitely NOT Lyme literate docs. However, based on some comments they made I have been doing some research to try to understand hubby's neuro symptoms.
Not that I believe the docs at this point -- it is all theory on their part with no test results to support their assumptions. Anyway what I have been told is that hubby has permanent brain damage to the cerebellum area of his brain.
What he has been experiencing is a return of several neuro symptoms that had either gone away entirely or improved greatly in the past with IV treatment for Lyme and oral meds for Babesia.
The primary symptoms revolve around tremors and other movements.
Here are 3 articles which explain the symptoms and causes of cerebellar disorders.
Note that mercury and celiac disease damage this part of the brain. I am pretty sure that Lyme also damages this area of the brain as well.
CoQ10 and Vitamin E both can protect this area of the brain. In my opinion they could also help heal these disorders as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
thanks bea for the info; so you are finding a LITTLE more about hubby's condition, and doing more research. best wishes; hope others come along more knowledgeable t han me!
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Bea,
This may give you some clues as to what is happening:
[pay close attention to this: "prevents the release of γ-aminobutyric acid and glycine.[34,35] The resultant ***lack of this inhibitory input*** leads to the muscle rigidity ..."
For many reasons, ask the docs (politely...make them think about it) if they think Mg sulfate or Valium would help.
NO drugs that may open the Na channels!
Valium opens chloride channels and inhibits the NAT enzymes...and...
"The effects of valium are thought to act on GABA-A receptors in the limbic system of the brain, especially in an area called the amygdala.
o The amygdala appears to be a center of emotions (e.g., fear). It sends signals to the hypothalamus and medulla which can activate the flight or fight response of the autonomic nervous system.
In rats, at least, the amygdala contains receptors for
vasopressin whose activation increases aggressiveness and other signs of the flight or fight response;
***oxytocin whose activation lessens the signs of stress."***
Be sure he stays hydrated and keep an eye on blood glucose levels...not too low...the brain must have glycogen! Complex carbs are okay and are needed. Think: Italian.
How are his electrolyte levels?
Brain cells CAN regenerate! When docs say "permanent" damage...I cringe!!! Proof:
Get a good vitamin E...like Gamma E by Jarrow Formulas. Need all the topocopols...not just "alpha". That one contains all 4...alpha, beta, gamma and delta.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
Thanks Marnie. Hubby is currently on IV Ativan -- actually has been on this for over 3 years now. Basically a stronger version of valium (works on GABA also). Docs changed med from PRN as we had been doing to a lower dose every 3 hours around the clock. Steady dose seems to be better tolerated, but not a fun schedule to be on.
Hubby actually was given IV magnesium (not sure if it was chloride or sulfate) during his last ER visit. I have been giving him magnesium sulfate IV's at home for about 3 years now.
See the thread I posted today on Babesia and IV Magnesium -- getting more confused by the minute.
He takes Unique E brand of vitamin E which does include all the forms of vitamin E.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Bea, has he been on the gluten-free diet for while now? [seems like I read that he is] Are you sure it's completely gluten-free??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi Bea, and sorry to interrupt your thread, but i have to say a huge thank you to Marnie for the links provided about brain regeneration.
what incredibly hopeful news they contain! thank you so much for posting them, Marnie.
I hope the info lifts your spirits as well, Bea!
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
Yes, thank you Marnie...as always!
Carol Ann
Posts: 1062 | From CA USA | Registered: Jan 2001
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Bea, Mg works WITH P5P (B6). It is critical that a "Meyers cocktail" contains a blend of the B vitamins.
In addition, the body will eliminate "excess" Mg within a 2 hour time frame which is why I feel it is important to take less more often. Sorta like "eating small meals frequently"...keep the nutrient levels up.
Bb ferments sugar to alcohol (ethanol)...as all spirochetes do.
I will post the alcohol-acetaldehyde toxicity link which includes info. about the RBCs.
Watch for it.
Also, Bb looks to be using transferrin (iron transport) and downregulating lactoferrin...which would bind iron. In that situation, it LOOKS like Bb and babesia might be "friends". Bb looks to need zinc to replicate, babesia looks to need iron.
I'm posting a RA - too much iron in the joints - lactoferrin connection (very recent abstract).
I will try to simplify all of the benefits of lactoferrin and post that also. I have pages and pages to go thru to do this...be patient.
Complicating matters...low L-histadine = high iron.
We look to be trying to use tryptophan and histadine to fight Bb's use of tyrosine (kinase) and phenylalanine.
In addition to stimulating tyrosine phosphorylation...when one route fail..another kicks in.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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Hubby is still having G.I. problems -- on nausea meds every 6 hours and it is only partially effective. Vomited some lunch today.
In desperation restarted low dose Quinine and Clindamycin a week ago when got out of the hospital. Somewhat helpful. Tremors/myoclonus/seizure-like episodes have improved.
Trying to hang in until fly to Missouri next week.
The acetylcholine issue has me totally stumped. Had been taking oral phosphatidylcholine prior to early January hospitalization for paralytic ileus. Since then have major problems with this supplement.
Stomach keeps trying to lock up -- slightly improved with quinine. Previously would break out in sweats and have greatly increased tremors/seizure-like episodes along with lower back pain -- episodes mostly shortly after eating.
The duck gastroenterologist was a pretty worthless appointment. As usual repeated many tests and wouldn't move on to other things that haven't been done -- wanted hubby to come back in a month. Don't think that is going to happen with this doc.
5 stomach x-rays and 2 abdominal CT's since early December -- obviously the G.I. slowdown is either a nerve issue or a metabolic problem or something else that no one has thought of checking into yet.
Lymetoo -- Hubby has been on a mostly gluten free diet for about 7 years since he was diagnosed with mercury toxicity. Not 100% compliant, but he does not have positive genetic tests.
A different test from Great Plains Lab showed an intolerance to gluten -- it was similar to a leaky gut test, but tests for byproducts of gluten which cross into the bloodstream from the stomach (test used with autistic kids).
The same test also found an intolerance to casein -- one of the major proteins in milk.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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