This Is MS Multiple Sclerosis Knowledge & Support Community

Merlyn,
I was just at a Canadian Blood Services office yesterday to make a financial donation in honor of friend who recently passed. The family wish was $$ or a blood donation in lieu of flowers. When I entered the office, they asked if I was making a blood donation (my wimpy husband opted to stay in the truck lest he be wrestled into making a blood donation!!). I said I have in the past & would again(donate blood) but that I was no longer able to because I have MS. After I wrote a ck, I asked if I was indeed ineligible... and offered that there seems to be a relationship between MS & hemochromatosis for which blood-letting was beneficial. She was familiar & told me that if I tested positive for the condition & with a doctor's approval that they will allow me to make blood donations every 80 days (I believe that was the time frame). Other than that, as we know... no donations are accepted from pwMS, for our safety, not because of meds or the disease. Is that the same story you have gotten or is it different from province to province? I just have to get tested... not sure why I'm dawdling???

I am going to experiment with cayenne pepper, Dr. Christopher's! It may do me in, but I understand that Cayenne will dissolve fibrin. Years ago, my fibrin was high off the scale...


http://www.bastis.org/cayenne.htm[/quote]

thanks for the info on fibrin Merlyn--
nattokinase is also supposed to be good for this
http://www.ask.com/wiki/Nattokinase

When I donated blood, my blood was so thick they had to use pincers with rollers to push the blood thru the tube--it just wasn't moving.
I donate again this week, and assume it will happen again. I did pick up some cayenne today, and will start using that and see how it goes for several months (til after the blood donation 60 days after the one this week), and then reevaluate what to use.
the product I got has 40,ooo heat units, and recommends 1 capsule 3 times daily.
Let us know how the cayenne helps you Merlyn--I'll post likewise.

dlb-I do not believe that blood regulations vary from province to province, I believe it is federal. I basically got the same story as you, and I understand their reluctance considering the debacle with hepatitis C. I also found out they don't test for Lyme disease, which makes me totally reluctant to ever have a blood transfusion. They should be using some other blood replacement fluids, there is just too much chance of pathogenic transmission.

Shye-I would start slow with the Cayenne, build up. I am afraid it is going to exacerbate my hot flashes! But I will try it, as Dr. Christopher has long maintained that Cayenne can correct any kind of venous insufficiency! From head to toe! Personally, I am a spicy food freak, and the only problem I have with it sometimes is poop that burns (thanks for sharing that LOL).

Years ago I wanted to try Heparin after reading Dr. Cheney, but I never did pursue it. I think there is something in our blood that is screwing up the veins, and removing it seems to give me about 45 days of relief until all of the red blood cells get totally replaced.


http://www.sciencedaily.com/releases/20 ... 105436.htm

Past studies showed that the destruction of the myelin sheath is associated with the accumulation of fibrinogen deposits in the brain of human MS patients. In this study, Akassoglou and colleagues showed that fibrinogen is not merely associated with the damage in MS, but an active participant.

I remember pulling out an embedded tick from my foot with a pair of tweezers when I was a kid, maybe eight or 10 years old. I grew up in Ontario, which at the time was not considered a Lyme disease risk. For years I have told doctors not to give me tetracycline because it makes me very ill. Now I'm wondering whether it was a Herxheimer reaction.

A number of people that have gone to Poland to get the CCSVI have been diagnosed with Lyme disease instead. When I was 19 I had something called Chlamydia pneumoniae, and I was not treated properly for it

http://www.davidwheldon.co.uk/ms-treatment1.html

I made a doctors appointment, I am going to try
doxycycline see whether I get the Herx, but my Dr. is on vacation so my appointment is not until August 27. Has anybody experimented with this antibiotic? I still believe I am removing some sort pathogenic critter from my bloodstream when I do phlebotomy, which results in improvement until the blood cells are totally replaced in 45 days. I am going to see whether my Dr. will do the Western blot test for Lyme, but I don't know whether he will.

Dr. Christopher's tincture of cayenne really rocks I guess! So far I'm only doing one drop, and it is burning my mouth... it will take me a while to get up to a full dropper full unless I get extremely brave. Some people swear that cayenne is what cured them of Lyme.

Merlyn
I recently got a bug bite of some sort--area got sort of pebble-like raised
tiny bumps, all a deep raspberry color--checked internet for pictures of lyme--only vaguely similar--could not find a dark area that might be the tick--so called E room, and they said come in. The Lyme specialist said definitely not lyme just from looking at it (did not know what it was--flue like symptoms for several days)--but he is used to people panicking and wanting him to run the test despite his 30 years experience. I took his word for it and did not get tests; but what was most imformative was his telling me that if suspect lyme, just take the meds--the tests are not accurate.
So Western Blot might not show anything, even if you have infection.

I have not been phoning in to listen to Dr. Lyn during her conference calls, but last night I decided to touch base with her again. She works with the company that developed the nano colloidal silver product:

http://www.resultsrna.com/products/acs_ ... orferi.php

She says that she is seeing great results using the silver for Lyme, that there are people that have been suffering terribly for years that are reporting getting totally better in three months or less... she is working with some clinic in Pennsylvania to set up a protocol for Lyme... she said Homeland security is all over this stuff, wanting to buy it by the gallon... it has been approved as a hospital disinfectant etc.

Anyway, she suggested that I try something... try to nebulize the colloidal silver, the zeolite, and glutathione all at once. She said she has seen great results with people doing this, it gets into the bloodstream immediately and systemically. I still have some glutathione, some of the ACZ zeolite and the ACS silver, so what the heck? I'll see what happens.

I bought a nebulizer a couple years ago, was nebulizing glutathione, didn't notice much of anything, so I stopped. But glutathione is the best way to get the liver working again... so I guess I will try her soup...

http://www.theranaturals.com/products.html

Reduced L-Glutathione™ Plus

Reduced L-Glutathione™ Plus Theranaturals™ trademarked name for its buffered form of GSH-Caps. Reduced L-Glutathione™ Plus capsules are specially engineered, without excipients, using high purity pharmaceutical grade reduced L-glutathione and sodium bicarbonate. Reduced L-Glutathione™ Plus Capsules can be administered in a variety of ways without body soft tissue irritation. An isotonic solution is produced when one Reduced L-Glutathione™ Plus capsule is dissolved in roughly 5 milliliters of distilled water.


Reduced L-glutathione is a tripeptide composed of glutamic acid, cysteine, and glycine and is found is almost every cell in the human body. Scientific literature suggests that reduced L-glutathione serves as a primary antioxidant for normal body function. Supplementation has proven clinically beneficial to those suffering from respiratory disorders such as emphysema, cystic fibrosis, chronic bronchitis, and asthma. Scientific studies also suggest that reduced-L-glutathione may be beneficial to those suffering from arthritic type autoimmune conditions.

Note: These statements have not been approved by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.

That's interesting Merlyn as I was just reading this article (a little old), through the Porphyria forum. They mention Gluthianone and lysteine as detoxifying porphyrins.

http://news.bbc.co.uk/2/hi/health/347735.stm

Porphyria is not one condition, but a group of diseases. While most of them are inherited, some can be picked up later in life.

They are caused by a build up of particles called porphyrins. These exist in all living things, but in porphyria, the enzyme that processes them breaks down. This causes illness because the porphyrins act as a toxin.

Research breakthrough

Dr Nick Jacobs at Dartmouth Medical School in New Hampshire and Dr Franck Dayan at the US Department of Agriculture's Natural Products Utilisation Research Unit in Mississippi led the new research.


They found naturally occurring enzymes that can detoxify porphyrins, but only in conjuction with two other substances called glutathione and cysteine.

The same enzymes exist in humans, and the scientists suggest that supplements of glutathione and cysteine could be given to patients with porphyria as a treatment.

"The stage is set for other researchers to feed people glutathione," Dr Dayan said.

Fascinating finding

Kate Grainger, of the British Liver Trust, said it was a "fascinating" finding.

Hal Huggins DDS has always maintained that MS is a porphyrin disease. He could be right, who knows? But thank you very much for that information. I tested very low in glutathione (Dr. Lyn tested me, it is not a standard test by any means). It is your body's main detoxifier of heavy metals, xenobiotics, anything that shouldn't be there. It is your main liver detoxifier... years ago, I basically flunked my liver detoxification profile. My phase 1 was too fast in relationship to phase 2, but I had a very peculiar problem. The rate limiting amino acid for glutathione is usually cysteine, but I was high in cysteine and low in glutamic acid and glycine. Cysteine makes me worse because it is neurotoxic at higher levels. Dr. Lyn attributes my problems with glutathione to mercury because Mercury interferes with thiol metabolism (basically sulfur metabolism). I was also low in sulfates because I was not converting methionine properly to sulfates... it is so complicated, I feel like a boring obsessive-compulsive when I start to detail the results of all of these tests that I had years ago. Dr. Lyn was very thorough, ran all kinds of tests that nobody's ever heard of. She concluded that I was thoroughly mercury poisoned, but detoxifying it has been very frustrating and not in my case very effective.

Glutathione gets depleted with heavy metal poisoning, any kind poisoning really, and taking it orally doesn't work very well according to most doctors. Certain foods are supposed to raise it, but you have my particular bottleneck with cysteine, the whole thing gets very complicated because my sulfur metabolism is so screwed up I cannot process anything but sulfates. I can take glucosamine sulfate, sodium sulfate, magnesium sulfate... but not sulfur. So things like eggs, onions, garlic, all make me worse. And until I can get rid of the mercury, this problem will continue. So yes I guess I will try to nebulize glutathione and the others together to see what happens. People with MS seem to be low in glutathione, same as those with Parkinson's, ALS, Alzheimer's, anybody with a neurodegenerative condition. Glutathione is what protects the CNS from lead or mercury etc. I have a feeling a lot of genes are influenced by levels of glutathione. I think I have read that glutathione can treat vasculitis (which is what I am assuming our narrowed/stenosis veins really indicate). GSH (glutathione) is used by the liver to clean up toxins from the death of red blood cells on a daily basis, and I am assuming again that if I have low levels of GSH my liver cannot deal with metabolic waste. Maybe this is why phlebotomy is so helpful? Dr. Lyn says the only reason the phlebotomy would help is that it is offloading toxins from the liver. Of course, too much iron will exacerbate any pathogenic issues like Candida or other bacteria...

Yes! Once you go "down the rabbit-hole" it can get very complicated. All that balancing to do! And one thing puts out another.

It's quite strange how lowering my iron levels has made this polycythemia pop up instead. But it definitely ties in with why the phlebotomies and blood tests, and menstrual bleeding making me feel so much better.

I'm wondering if the high hemoglobin etc showed up because I did the blood test in the afternoon and not fasting. I always have my tests in the morning usually, and fasting, because of the iron tests.

My new doctor said not to fast this time, and we took the bloods around the same time in the afternoon when I usually pass out on the couch.
I'll make sure I duplicate that with the next test. I always fell pretty good in the mornings. It's like my blood lacks oxygen in the afternoons, and when I was at my worst I was so out to it, no-one could wake me.

The plot thickens. I've noted quite a number of people with Porphyria also have Polycythemia, and some Porphs also develop brain lesions similar to MS. Wonder if the connection is in the oxygen content of the blood (for whatever reason, reflux, secondary polycythemia/hypoxia etc, exascerbated by iron content/saturation/synthethis of heme ie: as in Porphyria. Same result)

It is so controversial, there are so many special interest groups involved, it is very difficult to sort out what the heck is going on. This is kind of lengthy, but worth the time. It was a local presentation. The chapter of the MS society here on Vancouver Island is quite unique. They own their own building, have an on-site gymnasium, and it's a very proactive group. Dr. Code has written books because he has MS, and he totally recovered by raising his glutathione, his vitamin D etc. But he is still going to to Buffalo to have the CCSVI done. There's some really good information in this video, I learned a lot from it.

http://tinyurl.com/ccsvi-aug9-video

Where I live has been extremely hot for the last five days. I am talking 33°C (95°F). So I guess my observation concerns heat/cold and wondering how it all relates to CCSVI. I suffered for a couple of days like an idiot, and then I put on a wet T-shirt. This is how I generally devise my own personal air-conditioning because I don't have any air-conditioning in the house as it is rarely needed in this moderate climate. So as soon as I cool down in front of a fan with a shirt on that is wet, my mobility returns by about 30% compared to the meltdown in the heat.

So how does this all fit in with CCSVI and the fact that most people with MS have greater motor control when they are cold... if the veins in the neck are closed you would think that the mobility factor would remain constant, or at least I would think that. But my mobility is so much better when I am colder. I do not believe that blood flow would be better when you are colder, it should be worse... nor am I sure why heat intolerance seems to improve with phlebotomy. Am I missing something, does anybody have any idea why this would be? I used to argue with my neurologist that if there was permanent nerve damage I would not be able to move better in the morning than in the afternoons, it should be pretty much the same whenever... aargh matey, it hurts my brain.

Merlyn-good observations and questions re heat, cold and CCSVI--definitely applies to me--need to think about it--do know that after getting blood drawn, react better to heat.
I was to get second phlebotomy last week, but my blood pressure was too high, so they would not let me donate.
Will try again on Thursday 19th for phlebotomy, and post on my reaction.

But did get 6 vials of blood drawn today for tests, and was fasting (which usually makes me feel really ill)--yet felt better after the blood draw, including more energy, and then had fairly okay tolerance of the heat.
(I'm in NYC, and we are having one of the hottest summers ever--and super dry--trees dead all over the city--so been dealing all summer with the heat, and I'm sure the phlebotomy, and frequent small blood draws have helped me deal with it better than before).