Phlebotomy anyone?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Phlebotomy anyone?

Postby Bethr » Tue Jan 10, 2012 3:30 am

Hi Merlyn,
Be careful with your sample as porphyrins are destroyed by even a small amount of light, and will disappear from the sample at the slightest light exposure, so collect in the dark and protect with tin foil or similar. You'll remember (it's somewhere far back on this very thread), that a rheumatologist thought that porphyria was likely my problem, and said I needed to get my rash biopsied next time it came up. I haven't had it since then, probably as I've now had 8 phlebotomies to get rid of the excess iron.

I've been really well for the past 6 months or so, with just a small relapse after a dental anaesthetic (that's happened once before so my dentist used Articaine which is supposedly a bit better than the newer drugs but still gave me diarhea for two weeks), and also a bad turn after a glass of red wine. I thought since my iron levels were now down I might be able to drink alcohol again, but it was as bad as ever. Alcohol makes me vomit, always has. Alcohol, smoking and many types of anesthetics and drugs are porphrogenic and can increase the risk of a porphyria attack. It has something to do with cytochromes and anything that is metabolised through the P450 channels. It's kind of a "Cup runneth over" problem. So to top it off I've given up smoking in September! Smoke free now for 4 months.
Yippee, thats the end of a 35 year heavy habit and I feel sooo much better for it.

Porphyria is mainly hereditary, but not always triggered unless environmental conditions prevail.
So yeah has many similarities and heaps of Porphs (sufferers of porphyria) have been initially diagnosed with MS.
It doesn't really matter which type you have ultimately (only for family studies), as treatment is much the same, and it's more about avoidance than it is about treatment. Keep up eating carbs and glucose if you start to go off the edge, don't fast or diet, avoid things that go through the cytochrome P450 channel (many foods do as well as drugs etc, that needs a bit of research).

I hope that helps.
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Re: Phlebotomy anyone?

Postby Merlyn » Tue Jan 10, 2012 1:59 pm

I don't think that specifically Scottish/Irish/British, but whites are more susceptible.


http://www.med.nyu.edu/content?ChunkIID=22484


Risk Factors

Factors that may increase you chance of porphyria:
•Having a family member with this disease—most common risk
•Caucasians are at greater risk than Blacks or Asians
•Sex: female (related to the menstrual cycle)
•Most onsets happen between age 20-40
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Re: Phlebotomy anyone?

Postby Merlyn » Tue Jan 10, 2012 2:05 pm

Thanks Bethr! They are going to send me out a kit, and I will see what instructions are included. I am so glad you are still doing well. That is so cool! Since it takes about 45 days to replace red blood cells, methinks that is why my symptoms abated for about at length of time after doing a phlebotomy. I have ordered 2 pounds of powdered charcoal to see whether taking about 2 g three times a day will help with my MS/? symptoms. There has to be something about my blood, some component in it that is triggering spasticity. And my purple feet could very well be due to hypoxia due to porphyria. Who knows? For €90, it will be interesting to see what comes out of test.
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Re: Phlebotomy anyone?

Postby Bethr » Tue Jan 10, 2012 2:34 pm

It's all really interesting Merlyn, so do keep us up to date on your results for porphyrins.
I had a urine and faecal test done a couple of years ago, but porphyrins came back nil, I think because when I handed in the samples the receptionist at the local lab took the light covering off them, and I'd also started the phlebotomies! It's an uncommon test, so I suppose they aren't up with the play on the handling needs.

I'm sure in the future we will be able to get the genetic porphyria tests done. I've decided not to pursue testing at this point. I have a lab request from my Dr. in the drawer, so if I ever go into a major attack I can send off the samples immediately to the National Laboratory for full investigation. But I'm hoping that won't happen again so long as my iron is kept nice and low.

I haven't had any blood tests for nearly a year, so will probably go soon and see how my iron levels and hemoglobin are holding up.
One thing is for sure, I had a lot of iron stored away somewhere!
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Re: Phlebotomy anyone?

Postby Bethr » Tue Jan 10, 2012 3:40 pm

Here's a very good study Merlyn, on AIP (acute intermittent porphyria) and comparisons to MS, and other porph aspects like epilepsy, triggers. Very thorough - Enjoy :-D

EPIDEMIOLOGICAL, CLINICAL AND PATHOGENETIC
STUDIES OF ACUTE INTERMITTENT PORPHYRIA


http://www.porfyrier.dk/pdf_filer/studier_aip.pdf
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Re: Phlebotomy anyone?

Postby Merlyn » Thu Jan 12, 2012 4:21 pm

I spent about two hours last night talking to a woman with MS/porphyria who lives in Oregon. She said years ago there was a Dr. Morton at the University of Oregon who was an expert on porphyria. Her condition is very similar to mine, and she said something very interesting which I am going to try. She said that when she has terrible spasms, she takes about 500 mg of manganese and it stops. I find this interesting because once again Hal Huggins DDS said that manganese is always screwed up in MS, either too high or too low. I believe that manganese can chelate iron... anyway, she knows three other women with MS/porphyria. And yet the literature keeps repeating how rare this condition is. Meanwhile this woman in Oregon says umpteen drugs can trigger it, Mercury can disable any of those enzymes that go into making hemoglobin, in other words environmental triggers are everywhere.
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Re: Phlebotomy anyone?

Postby 1eye » Thu Jan 12, 2012 5:45 pm

I know there are HBOT chambers where you sit upright. Lying down might not work as well if your best drainage is not through your jugulars (stenosis, re-stenosis, CCSVI malformations). Might be worthwhile getting one of them 3d-MRVs and finding out if you need angioplasty first.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Re: Phlebotomy anyone?

Postby Bethr » Fri Jan 13, 2012 1:27 pm

Absolutely Merlyn, triggers are everywhere for porphs and it seems that different porphs have different triggers, even when it comes to drugs. So although there are lists you and your Dr. can look at when it comes to prescribing you may react differently to others.

I read some articles on prevalence a while back, and although most literature says the porphyrias are rare, a French Genetic study on blood donors fround 1 in 1600 carried the gene (which is dominant, so you only need one), so are at risk of being triggered into a Porphyria attack (if your cup runneth over, so to speak), and different triggers mount up from environmental sources.

These trigger issues must be quite common in this day and age with smog, chemicals, drugs and the huge range of foods (with additives) we now eat compared to older times when things were a bit more simple.

i have a lot of faith that genetics will answer many of our queries in the coming decade.
Imagine being mapped out fully and knowing where your strengths and weaknesses were.
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Re: Phlebotomy anyone?

Postby Bethr » Fri Jan 13, 2012 1:33 pm

Heres that study, done in 1997.

Acute intermittent porphyria: prevalence of mutations in the porphobilinogen deaminase gene in blood donors in France.
Nordmann Y, Puy H, Da Silva V, Simonin S, Robreau AM, Bonaiti C, Phung LN, Deybach JC.
SourceCentre Français des Porphyries, Hopital Louis Mourier, Colombes, France.

Abstract
OBJECTIVES: Acute intermittent porphyria (AIP) is an autosomal dominant disorder resulting from a 50% deficiency in porphobilinogen deaminase (PBG deaminase). The true prevalence in the general population of mutations in the PBG deaminase gene capable of causing AIP is unknown. However, it is important to identify asymptomatic carriers of AIP mutations because all are at risk to have an acute attack.

DESIGN: We measured erythrocyte PBG deaminase from 3350 healthy blood donors. When a clear cut deficiency (< mean minus 2.5 SD) was found, the PBG deaminase gene was analysed by molecular biology technics.

SUBJECTS: Four subjects with PBG deaminase deficiency were identified. Two had mutations in the PBG deaminase gene which are known to cause AIP.

CONCLUSION: We conclude that, in France, the mutations of the PBG deaminase gene show a high prevalence in the healthy population. If only these two confirmed latent cases are used for the calculation, in France the minimal prevalence of the AIP gene is 1:1675.

PMID:9350165[PubMed - indexed for MEDLINE]


So it was 1:1675 minimum for AIP (acute intermittent Porphyria), which is more common than MS maybe!
And that's only one type. There are seven other types of Porphyria that weren't tested
for, with PCT (Porphyria Cutanea Tarda) being the most common.
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Re: Phlebotomy anyone?

Postby Merlyn » Thu Feb 09, 2012 5:06 pm

Last week I started on 150 mg Doctor's Best Bentofamine and I was rather surprised to notice better mobility, better eyesight, less joint pain... then yesterday I took 300 mg, and was able to hold onto utensils like a fork or knife with much greater ease. Today, I took 600 mg and I have noticed greatly increased sensitivity of the bottom of the feet. And I can reach! Without pain! My left arm is moving in ways that it has not moved for two years! It is far far easier to control my right arm, navigate the wheelchair. This is fu**cking amazing actually. My results with this exceeds my results with the hyperbaric chamber. Now I do have to add a caveat as I have been doing CPAP therapy, but prior to this Benfotinamine, I was actually more tired because I am not tolerating the mask (I am now on my third one). Now maybe this CPAP is having some form of beneficial outcome, but until now I certainly haven't noticed any improvement in mobility... now there's a couple reasons why this stuff could help the way it is helping me. One, thiamine is what you use to make acetylcholine, which is a major neurotransmitter that assists nerve communication... you need thiamine to process sulfur, and anyone that knows by postings of years gone by, you might remember that sulfur and I do not get along. On last night's conference call, once again Dr. Scott was on the line and he said it was absolutely criminal that they were not having diabetics take 150 mg a day to prevent complications. He said he used it in his practice 20 years and never had his diabetic patients lose a limb or develop kidney problems. This stuff has been around for 50 years. Years ago, I had an Organix acid test that pointed out that I needed B1 (thiamine) three times a day... but of course, things like mercury and lead and cadmium screw up the enzymes that help you convert B1 to its active form. Considering that I cannot convert thyroid hormone from T4 into T3, maybe I should not be so surprised that thiamine is also messed up.

Mercury oxidizes B1, and I have known that forever, but I did not know you need thiamine to make stomach acid. I did not know that thiamine is critical to the blood brain barrier, that deficiency causes a breach in the BBB. Thiamine is necessary to process magnesium properly. Anyway, I am hoping my results are not transient like they are from the chamber, although last night results did last until bedtime. As far as I can figure out, it is taking about four hours from the time of dosing to the time that I see much much better mobility. And I sure as hell hope that is not like my phlebotomy where I got amazing results for about 40-45 days and then it all disappeared. Thiamine seems to be heavily involved in vascular health also, maybe because it helps carbohydrate metabolism. You need more thiamine if you have sleep apnea, and if you have a lot of Candida it releases a toxic metabolite that screws up the enzymes that convert thiamine to its active form. I paid around $15 for 120 capsules of 150 mg. I will keep you updated!


http://www.innovative-diabetic-diet.com ... pathy.html

6.Vitamin B1

Some animal studies have shown a decrease in pain with a combination of vitamin B1, vitamin B6, and vitamin B12.

The fat-soluble form of vitamin B1, called benfotiamine, has been used effectively to treat alcoholic and diabetic neuropathies.

The most marked pain relief from benfotiamine occurred in patients with diabetic neuropathy after only a three-week trial period.

http://www.whfoods.com/genpage.php?tnam ... t&dbid=100


Nervous System Support

Vitamin B1 also plays a key role in support of the nervous system, where it permits healthy development of the fat-like coverings which surround most nerves (called myelin sheaths). In the absence of vitamin B1, these coverings can degenerate or become damaged. Pain, prickly sensations, and nerve deadening are nerve-related symptoms that can result from vitamin B1 deficiency.

A second type of connection between vitamin B1 and the nervous system involves its role in the production of the messaging molecule acetylcholine. This molecule, called a neurotransmitter, is used by the nervous system to relay messages between the nerves and muscles. Acetylcholine cannot be produced without adequate supplies of vitamin B1. Because acetylcholine is used by the nervous system to ensure proper muscle tone in the heart, deficiency of B1 can also result in compromised heart function.

Deficiency Symptoms

What are deficiency symptoms for vitamin B1?

Because of its ability to disrupt the body's energy production, one of the first symptoms of vitamin B1 deficiency is loss of appetite (called anorexia) that reflects the body's listlessness and malaise.

Inability of the nervous system to ensure proper muscle tone in the GI tract can lead to indigestion or constipation, and muscle tenderness, particularly in the calf muscles.

Other symptoms related to nerve dysfunction are commonly associated with thiamin deficiency, since the myelin sheaths wrapping the nerves cannot be correctly made without adequate thiamin. These nerve-related symptoms include "pins and needles" sensations or numbness, especially in the legs.
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Re: Phlebotomy anyone?

Postby Merlyn » Fri Feb 10, 2012 1:29 pm

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Re: Phlebotomy anyone?

Postby Merlyn » Sun Feb 12, 2012 2:31 pm

This stuff was done more for me than anything besides thyroid. Amazing reduction in pain/stiffness/contraction. I am taking 600 mg at the moment, but might experiment with more. Finally finally finally finally finally finally finally finally finally finally, after spending so God damn many years taking things, finally there is a product that is producing some amazing benefit. Like I say, I am hoping and praying that the results are consistent and last, but so far so good, in fact so far so wonderful... my home care help is freaking out... not just me noticing the great improvement in mobility. This stuff is incredibly expensive in Canada and seems to only come in 80 mg capsules. I just love using this company...

http://www.iherb.com/
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Re: Phlebotomy anyone?

Postby dania » Sun Feb 12, 2012 2:50 pm

Thanks for the tip Merlyn. The stiffness due to muscles remaining contracted is my worse symptom. I will give it a try.
Did a little research on it and this might explain a few things.
Benfotiamine (rINN, or S-benzoylthiamine O-monophosphate) is a synthetic S-acyl derivative of thiamine (vitamin B1). After absorption, benfotiamine can be dephosphorylated by cells bearing an ecto-alkaline phosphatase to the lipid-soluble S-benzoylthiamine.[1] Benfotiamine should not be confused with allithiamine, a naturally occurring thiamine disulfide derivative with a distinct pharmacological profile.[2]

The primary use of this antioxidant is as an "anti-AGE" supplement.[3] In a trial, benfotiamine lowered AGE by 40%.[4] However, in Germany doctors have been known to combine benfotiamine with pyridoxine hydrochloride and use it to treat patients with nerve damage and nerve pain such as sciatica.

At high doses, benfotiamine was shown to be effective for the treatment of diabetic retinopathy, neuropathy, and nephropathy. It is thought that treatment with benfotiamine leads to increased intracellular thiamine diphosphate levels,[5] a cofactor of transketolase. This enzyme directs advanced glycation and lipoxidation end products (AGE's, ALE's) substrates to the pentose phosphate pathway, thus reducing tissue AGEs
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Re: Phlebotomy anyone?

Postby Merlyn » Mon Feb 13, 2012 1:36 pm

The thing that I find astounding about this, is that I take all kinds of B. vitamins, and have done so for years. I can't say that I've never noticed much benefit. I have injected every form of B12, I have experimented with coenzyme forms of B. vitamins for years, sprays and liquids and capsules and transdermal... although right now I am going to try Methylfolate, a form of folic acid that I have not tried. I believe this improvement is due to an improvement in neurotransmitter acetylcholine production... I have tried folinic acid, but not Methylfolate... I've taken lots of P5P, and definitely tried other forms of food sources like nutritional yeast, and Brewers yeast etc. I really cannot say anything of it made any difference...


http://www.pamelaegan.com/articles/foli ... y_0001.htm


The MTHFR enzyme is responsible for creating the circulating form of folate. Folate is important in regulating our homocysteine levels. A normal homocysteine level should be less than 10. Defects in this enzyme can cause elevated homocysteine levels. Elevated serum homocysteine levels have been associated with an increased risk of cerebrovascular disease, coronary artery disease, myocardial infarction, and venous thrombosis. In women, pregnancy complications and an increased risk of fetal open neural tube defects (spina bifida) have been reported.

With regard to vascular disease, these polymorphisms can increase your risk of vascular disease and all of the disorders listed above. Folic acid plays a key role in the maintenance of gene stability. A growing body of evidence suggests that a deficient supply of dietary folic acid may be a risk factor for several human diseases, including neonatal malformations, Down syndrome, Alzheimer's disease, cardiovascular disorders and cancer.
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Re: Phlebotomy anyone?

Postby Merlyn » Tue Feb 14, 2012 5:05 pm

Thanks JoyceF,

It seems they have related thiamine deficient brains to having iron deposits...

http://alcalc.oxfordjournals.org/content/44/2/141.full

Indeed, previous studies have reported the presence of iron deposits in TD brain, in the form of both iron and ferritin (Calingasan et al., 1998, 1999), evidence of both BBB disruption and oxidative processes at work.

XXXXXXXXXX

Seems it can even treat Alzheimer's...

http://brain.oxfordjournals.org/content ... 2.abstract
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