lymemomtooo
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posted
My daughter is on Tegretol, a seizure drug, I think, to help with her major damage from hypo-perfusion..(shown on a brain spect scan)Unfortunately, it is really messing up her blood sugars.
She was doing better with them after major non-compliance and now it is discouraging since the meds are causing off the meter highs..We were told it might affect her blood sugars.
Anyone with any experience with this and know of any good meds? I would be ever so grateful..
Marnie has offered some suggestions re: Mg and zinc and I know Mg is a big player in the tick borne disease issues,but is there something that will safely enhance diminished blood flow in the brain??
I am able to also occassionally use some chlorella as Gigi suggests because we also are constantly dealing with other toxin issues.
Thanks for any suggestions..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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Michelle M
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C0Q10 is s'posed to help, if not contraindicated by other meds (say, for example, babesia treatment). But it's gotta be taken for a good while -- not an instant fix. Check with LLMD first, a'course.
B vitamins too, but I forget which ones.
Diamox reduces intercranial pressure, which puts extra stress on a brain that already isn't getting enough blood supply, so that might be worth a try (though it did not help me, my LLMD said it helps about 50% of his patients).
Wishing healing to dear daughter -- sure know what you mean about the non-compliance thing... my daughter's symptoms have vanished now so I've practically gotta beat her to push pills down her!
Michelle
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lymemomtooo
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Thanks Michelle. I will check with the llmd to see if we can try them..
The non-compliance issue is my daughter does not want to take anything and has now refused abx and most suppelements..She is her own worst enemy but since the perfusion affects the areas of thought, she may not be able to reason well enough to take the right path..
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Carol in PA
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From what I understand, hypoperfusion of the brain is caused by inflammation.
The infection by Lyme bacteria causes inflammation. The inflammation causes the blood vessels to swell slightly.
The smallest blood vessels, the capillaries, carry the red blood cells through them, one by one.
As the red cells pass through the capillaries, the oxygen in their hemoglobin passes through the cell walls into the body cells.
The mitochondria in the cells use this oxygen and the glucose from the blood to make energy.
The brain uses ALOT of energy to do its job.
When the capillaries are slightly swollen, the red cells cannot pass through them as easily and quickly.
Therefore, less oxygen and blood sugar gets to the brain cells.
The red cells may also have the problem that their walls are a little too stiff to "deform" as readily in order to squeeze through the capillaries.
This can happen when the proper nutrients are not available when the cell walls are being made. Transfats are a problem here.
The solution lies in reducing the inflammation.
I was just reading info about this today, when I was looking at articles about cholesterol.
Antibiotics help to kill the Lyme bacteria, or they retard their growth so that the white cells can kill them, but they also can reduce the inflammation in the body's cells, so you feel better.
Excerpts: Treatment must be directed at inflammation. Such means include common dietary supplements having proven anti-inflammatory action such as omega 3, vitamins B6, 12 and folic acid, co-enzyme Q10 and buffered aspirin. All of these readily obtainable, safe, over the counter substances are of thoroughly documented benefit.
As to source and dose of the supplements, Omega 3 is found in fish, especially the oil rich fish such as herring, mackerel, salmon (fresh and canned) and sardines.
It is also found in eggs from specially fed chickens, having 100-200 mg Omega 3 per egg. Small amounts are also found in regular eggs.
Certain vegetable oils such as flaxseed, canola and walnut contain a short chain type of omega-3, less efficiently metabolized.
Fish oils are now increasingly available for use directly in capsule form. Take all you reasonably can of omega-3. There is no upper limit.
The 81mg dose of buffered aspirin is nearly as effective as regular aspirin in platelet inhibition (the mechanism of action of aspirin in Cardiovascular disease) and has much less likelihood for side effects in unusually sensitive individuals.
Remember the buffer contains magnesium, having its own benefit in heart disease.
For the vitamins, 80-100mg of B6, 200-250mcg of B12 and 400-800mcg of folic acid would be considered in the desirable range to insure homocysteine control.
Dosage of CoQ10 depends on the condition. If you are using it with your statin merely to prevent the onset of muscles aches and pains or nerve damage, a dose of 100 to 200mg daily is reasonable.
On the other hand, if you already have these problems and have stopped your statin drug and are trying to get back to normal, a daily dose of 500-1000mg might be advisable, especially since Q10 is a very safe, natural substance.
It is true also that in selected clinical trials of certain neurological diseases, doses up to 2400mg daily are being studied. As to the best form, try to find Gelcaps and look for economy.
=============
I've also read the supplementing your Omega 6's with something such as Evening Primrose Oil can help the walls of the red blood cells to become more pliable, so that they can deform more readily as they pass through the capillaries.
It takes about six weeks for a complete rebuild job of red cells.
Another thing that I found from personal experience is that Resveratrol helped improve my hypoperfusion.
Quote: Resveratrol is a unique compound produced by grapevines and other plants in response to environmental stresses.
Studies have demonstrated that resveratrol has potent antioxidant activity and also has the ability to inhibit platelet aggregation.
These actions may help prevent free-radical damage throughout the body and provide protective support to the cardiovascular system.
========
When I was taking 4 to 6 tablets of Resveratrol daily, my ablility to think was restored.
But apparently it flushed out more toxins than my kidneys could handle, and I got kidney pain, so I stopped.
Bea Seibert had posted that Resveratrol reduces one of the chemicals in the brain that causes dysfunction. (Can't remember the details.)
I've also read that vinpocetin helps the brain, but I don't have experience with that one.
Since your daughter is refusing most supplements, she may not want to take any of this stuff unless she understands the mechanism that is causing the problem, and how the supplements help fix it.
Wishing you the best, Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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lymemomtooo
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Thanks so much..this is a wealth of info..I appreciate all the help..It makes sense to me, just hope I can convince the 19 year old to try some of it..Will run all past llmd first..lmt
Posts: 2360 | From SE PA | Registered: Mar 2004
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Jellybelly
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Doesn't hypoperfusion mean that not enough oxygenated blood is reachig an area? Then maybe think hypercoagulation. Thick sludgy blood for 1. does not carry oxygen very well and 2. it moves very slowly and is harder to push through.
If you do a Google search you will find quite a bit of stuff on hypercoagulation being at the root of hypoperfusion of the brain and anywhere else for that matter. Then we know that in the majority of our cases chronic infection is at the root of hypercoagulation.
So in that case you would want something to break down the fibrin like NattoK, Rechts-Regulat or heparin.
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Carol in PA
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Oh good, Jellybelly brought up the topic of hypercoagulation.
I remembered this after I had posted, and planned to come back and say something about it.
Hypercoagulation is treated with Heparin, but it can also be treated with systemic enzyme therapy, which is what I'm doing. I've been taking Wobenzym, which is a blend of enzymes. The most remarkable result for me is that it reduced the severity of my headaches. Yay!
I mentioned this topic to my family doctor, and his absolute lack of response led me to believe that he didn't know about it. Sigh.....
Carol
p.s. Gigi and Scott have posted about Rechts Regulat, which also helps this condition.
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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sometimesdilly
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Carol B-
What a great explanation of hyperperfusion! Really, it is the best I've ever read. I actually understand the whole process- for the first time...
And wow, accompanying wonderful information about supplements that might help and why they might work. Lymemom said it right- a wealth of information.. (hope some of it helps your daughter, Lymemom!)
Seems to me that this info should go into the Newbie links (or is it already there?)
Dilly
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Carol in PA
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Dilly, Shoot, you paid me a compliment, but you directed it to Carol B, who lives in Baltimore.
Hypo-perfusion is not enough blood.
Hyper-perfusion is too much blood.
Heh, can you tell that I'm a little cranky tonight?
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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Michelle M
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Fine stuff, Carol!
I have not been able to get my LLMD too excited about any hypercoagulation issues. I thought that might be why it feels to me that my brain is not getting enough blood. There is pain, there is bad fog. I have lyme and babesia WA-1. Perhaps I just need to treat the babesia longer. I also have numerous brain lesions. Some of them are not small. I feel that they impede the flow of blood; a differential dx on my MRI was brain vasculitis.
Taking a vasidilator such as Relpax brings an almost immediate flow of blood back into my head. I can feel it. The pain recedes a lot. To me that's confirmatory there is not enough blood in my brain. I too just don't know how to treat it, and you really cannot take Relpax every day. (Insurance already has twin cows when they see the refill request.)
Michelle
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sometimesdilly
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Dear Carol A to Z except B:
Yep, I surely can tell about the crankiness
Can you tell I don't get enough blood circulating in my brain? I even edited once to change profusion and perfusion. Ah me, oh well.
And glad you weren't so cranky as to miss the compliment.
Hugs, Dilly
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lymemomtooo
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Dilly, Carol and all, thanks so much..The conversation will help me to know what to suggest to the dr..If only the brain damaged child would buy into it..
Also Carol B changed her name to Cobweb so the Carols on opposite sides of the river would not be so confusing..
I really appreciate the help..Others feel free to chime in..And I had wondered if the hypercoag might not be at the root of some of it..
Posts: 2360 | From SE PA | Registered: Mar 2004
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To those of you who seem to know lots about hypoperfusion,
Would gingko biloba help?
Carol, your description made me feel so validated. For weeks I've been herxing on Levaquin and saying, "I feel like my brain isn't getting enuf oxygen or sugar or something."
Cheers, Denise
PS My SPECT was negative. Goes to show you how this dz waxes and wanes.
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Carol in PA
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Denise, you asked, "Would gingko biloba help?"
Yes, it probably would, but I don't know if it would help me...whenever I take it I get horrible heartburn.
Carol
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minoucat
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posted
Lymemomtoo -- You're in such a delicate spot, with so many possible drug/herb intractions, that I hate to make amateur suggestions.
But FWIW, in his book "Healing Lyme Disease" Buhner discusses supplements to assist with blood flow to the brain -- vincamine, huperazine, and something else I can't remember (Ha! Obviously I've been non-compliant). Anyway, he discusses the research, dosage, and specific actions of each supplement/herb he recommends.
I hear that he'll be responding to email questions about the LD herb protocol on the Planet Thrive site come October 3, so you might want to go there and ask him directly about your situation.
Good luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
P.S. Neural Therapy in the right places definitely restored my brain.
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lymemomtooo
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Thanks all..I haven't been up to date on this post for a couple of days and am pretty busy putting on a town festival but I soooooooo apprecitate all of the help..
Gigi...I am listening every day..lymemomtooo
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Jellybelly
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Denise, if you are talking about hypo-perfusion being caused by hypercoagulation, then gingko probably would not do a whole lot. It does thin the blood, but by a different means then what is needed to treat excessive fibrin buildup seen in hypercoagulation.
If you are looking for something natural then look to the enzymes. In particular NattoK which is easy to get and take, or there is the Rechts-Regulat which is supposed to be better then the Natto, but tastes nasty if you ask me, and is pretty hard to get.
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Truthfinder
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And somewhere within the realm of hypercoagulation is Hughes Syndrome, another ``sticky blood'' disorder. (Also called antiphospholipid syndrome.) This disorder is not uncommon but often goes undiagnosed and can be deadly.
I think testing for this is fairly simple, and treatment is often with Heparin.
Just some of the symptoms are headaches, neurological problems and seizures .
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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Here's what I found on gingko - my main focus would be on the endothelium relaxation possibly allowing the RBCs to fit better through the capillaries. (This is in reference to Carol's post about the RBCs starting to flow more slowly through the capillaries thus less oxygen being released.)
FWIW, here's what American Family Physician says about the pharmacology of Gingko.
The mechanism of action of ginkgo is believed to be produced by its functions as a neuroprotective agent, an antioxidant, a free-radical scavenger, a membrane stabilizer, and an inhibitor of platelet-activating factor via the terpene ginkgolide B.3-6 Other pharmacologic effects include the following: endothelium relaxation mediated by inhibition of 3',5'-cyclic GMP (guanosine monophosphate) phosphodiesterase7,8; inhibition of age-related loss of muscarinergic cholinoceptors and a-adrenoceptors; and stimulation of choline uptake in the hippocampus.1,9 Ginkgo extract also has been shown to inhibit beta-amyloid deposition.
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lymemomtooo
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Thanks..I faxed some questions to my daughter's llmd and info about a possible hyper coag. issue and she has ordered many labs to find out..
So we may be getting there..lymemomtooo
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