Phlebotomy anyone?

[Bethr]

Seven weeks post-phlebotomy and I'm just starting to go backwards again.
I started to afternoon sleep in the past week, and my joints are stiffening and getting a little bit sore. Bit of nerve pain in my arms and legs also. I have to wait another 5 weeks until I am eligible to donate again!

I'll go and get my iron panels done in the next couple of weeks, and see where I am at (that will also give me a small blood draw, which will definitely put me right for a week or so). I'll also see what my new doctor thinks about authorising therapeutic phlebs every six weeks to see if we can get my ferritin under 50. Having to wait three months may be just a bit too long when you have an iron loading gene! I'm sure I'll get there but it might take years at this rate, and I don't see why I should have to "go backwards" at all, when there is a public therapeutic phlebotomy clinic 5 minutes drive from where I live!

Don't get me wrong, this last phleb put me right for a longer period than the first one in January, so I'm on the right path.

[Merlyn]

Glad to hear that you are still finding relief Bethr-I have not had a recent blood panel done... went to the hematologist, no enlightenment there.

I am waiting on the results of a heavy metal test for lead... a used 5000 mg of EDTA. The hematologist agreed that it is a very good blood thinner, so I am taking 3000 mg a day. The only caveat I find is that I must take plenty of multi-minerals in order to replace what is being removed. So far no real side effects good or bad. I have not been posting much, not much to report. When I get the results of the heavy metal test, I will be sure to post the outcome.

[shye]

Bethr--at seven weeks, you still sound pretty good despite effects starting to wear off--hope your new dr is more knowlegeable, and can see immediately what you are attempting. Very frustrating, for sure.
I'm at six weeks out now, and have been losing the energy I gained, but not totally back to zero--and the lengthy, unrelenting heat wave we are having here does not help And I have been getting different blood tests done almost every week for past 6 weeks, so meant still gettting rid of some blood consistently.
Will be able to donate again on the 5th or 6th of August--then for all of august, no other blood tests to be done (my dr on vacation for that month)--so the 1 pint will have to do til the next allowable donation, 56 days later. But I am okay with that, my trans sat and ferritin are pretty low now. Might even turn out I don't need to donate so frequently--the results from this next one will let me figure a schedule out.
Crazy that we have to do almost all the figuring out ourselves--at least my dr goes along (to a certain point) with my logic.
Let us know what your blood panel is when you get it drawn.

[shye]

Merlyn,
Glad to see you back. This article http://www.naturalnews.com/029148_pecti ... etals.html
might intererest you ?? Definitely a safe way to do it.

Re: my chelation--due to error? (and/or clearly trying to cheat me), my dr was only giving me o.6 gm of EDTA per drip for the first 20 drips!!!!!
this is way too low to be of any help. Had a real show down, and now getting 2.5 GM EDTA per drip, but just started this amt, and the dr's office will be closed for month of August. So, not at all sure where chelation will get me at his point--much time and effort wasted, because need about 30 drips to have effect, so at one per week, will be doing this drip stuff thru next Spring, and am losing patience with the process. (esp now with the stress of having to check up each week to make sure they are giving me the correct amt).

[Bethr]

Over here you can only donate every 82 days!
So like I said, a very slow boat to recovery.

[Merlyn]

Well, I got the results of my heavy metals test using 5000 mg of the Oral EDTA. I am very very pleased by the results, because Oral EDTA is not usually recommended as the provoking agent. EDTA IVs yes, or IVs of DMPS, or oral DMSA, but Oral EDTA is not the agent of choice. In fact, my naturopathic Dr. doubted I would see any metals showing up because she said oral EDTA would only pick up what was in the digestive tract. It would not indicate organ storage at all. However, I countered with some of the research of Dr. Gary Gordon who says that while you absorb about 5% of Oral EDTA so that it gets into the bloodstream, if you have leaky gut, all bets are off. Considering that I had just done an indican test for leaky gut which came back at a high positive, I went ahead and did the heavy metals test.

I took 5000 mg of oral EDTA, waited 3.5 hours, did one single urine collection. Had I collected more over a longer period, I bet the numbers would've been higher.

Some metals came back within reference range, but they were detected. This included Antimony, Arsenic, Cesium, Mercury (1.2... reference range is below 4), Nickel which came in at 11, reference range is below 12, Thallium which came in at 0.4... reference range is below 0.5, Tin and Tungsten. I was pleased with the mercury, because EDTA is not to be a great chelator of mercury. Any little bit of it that I can get out of me is most welcome.

Barium came out elevated at 11... reference range is below 7

Cadmium came in at 1.3... reference range is below 1

Lead came in at 2.8... reference range is below 2

The last time I did a heavy metals test, I was using zeolite. Barium also showed extremely elevated on that test, and I don't know where I am getting that exposure, because I've never had any of the medical tests that use barium. The paperwork says barium is in peanuts, but I don't eat a ton of those, some but not a ton.

On the zeolite test, I had no lead showing, and this does not surprise me as most lead is stored in bone. I don't think zeolite can remove lead from bone. The reason I went ahead and did this test was because when I went to the hematologist, I showed very low reticulocytes. According to this paperwork from Doctor's Data:

"Lead accumulates extensively in bone and inhibits formation of heme and hemoglobin in erythroid precursor cells. Bone lead is released to soft tissues with bone remodeling that can be accelerated with growth, menopausal hormonal changes and osteoporosis. Low levels of lead can cause impaired vitamin D metabolism, decreased nerve conduction rates.... at relatively low levels, lead can participate in synergistic toxicity with other toxic elements (e.g. cadmium, mercury)."

Anyway, I found this interesting and I will continue to take an oral EDTA. I am taking 3000 mg every morning, I am tolerating it well, but I must take a multi-mineral supplement with it or I feel mineral depleted.

[Merlyn]

A recent study shows that people who supplement with more than 700 mg/day of vitamin C have a 62 per cent lower risk of dying from heart disease than do people with a daily intake of 60 mg/day or less(49). Supplementation with 2 g/day of vitamin C has been found to reduce adhesion of monocytes (white blood cells) to the lining of blood vessels and thereby reduce the risk of atherosclerosis(46,47,50). Vitamin C supplementation (2 g/day) also effectively reverses the vasomotor dysfunction often found in patients with atherosclerosis(51). Some very recent research carried out in Japan has shown that restenosis (reclosing of opened arteries) after angioplasty can be significantly reduced by supplementing with ascorbic acid (500 mg/day)(52).

http://www.yourhealthbase.com/vitamin_C.htm

I am experimenting with large dose vitamin C... started at 6 g, mainly to see if it is as effective as nystatin, but then got interested in how it prevents plaque from forming on arteries etc.

[Bethr]

I've got my latest lab results in and I'm really happy with my lower iron levels.
Iron 14 (down from 28 )
transferrin saturation 20% (down from 62%) yipee!!
Ferritin 69 (down from 175)

BUT
My CBC has gone weird
Hemoglobin is up to 163 g/L (range 115-155)
HCT 0.485 (range .35-.47)
White Cell Count 15.4 (range 4-11)
Lymphocytes 6.9 (range 1-3.9)
Monocytes 1.4 (range 0.2-1)

So I'm having the test repeated in a few weeks.
My blood is very thick usually, but it's got worse.

[Merlyn]

Let us know how it goes Bethr-everything is high, like your body has decided to hyper produce blood cells. I have the opposite problem, although I have not done any recent blood work.

[shye]

Bethr-
some kind of infection? or allergic reaction, such as reaction to medicine?

[Bethr]

The hemoglobin and HCT are much higher than usual for me, the others are usually quite high and fluctuate sometimes because I'm asplenic and my blood doesn't get filtered by the spleen.
I'm well (other than the daytime sleeping) and I don't take any medicines.

The good thing was the fatigue disappeared for five days after the blood test draw. Still works for me obviously.

There is a condition called polycythemia where your Hb and HCT get too high. This is counteracted by phlebotomy!
I seem to be going around in circles.

[shye]

Bethr
could dehydration have anything to do with it? I seem to recall that blood volume controls a lot of these parameters, and the volume of plasma cn be skewed if dehydrated.

[Bethr]

Yes, dehydration can cause it too. I've been told to drink a lot before my next blood test to rule that out.
I don't think I was dehydrated, but you never know.

[Merlyn]

I am hoping to go back to my physician in September to see whether I can do another full phlebotomy. My ferritin seems to creep back up slowly, that is not my limiting factor really, it is hemoglobin. My small blood lets do not seem to be as effective as full phlebotomy. They help, but not enough I am going to phone the center in Vancouver to see whether I can pay for plasmapheresis, because they do not have the funding for MS. I cannot really afford it, who could? I would have to sell something, move to another house. So it would be a very big financial problem. There is something in the blood, exactly what? Most people with MS seem to have hypercoagulation, thick blood. Mine is thick even without a lot of red blood cells.

[Merlyn]

http://www.digitalnaturopath.com/cond/C546009.html

Hypercoagulation means thickened blood. Research from the late 1990s reveals that many patients with chronic disease may have an underlying coagulation defect contributing to their symptoms. While few doctors are familiar with this condition, understanding the theory behind it can help explain many symptoms. Treatment based on this theory can lead to improvement and even recovery.

David Berg of Hemex Laboratories has been studying the hypercoagulation often found in patients with chronic disease. This list currently includes CFS/FMS, myofascial pain syndrome, osteonecrosis of the jaw, fetal loss, multiple sclerosis, Crohn’s disease, Sjogren's syndrome, IBS, Lyme disease, autism, gulf war illness and ADD.

Thick blood is the result of fibrin being deposited in the small blood vessels. Fibrin formation is the last step in the clotting process that stops bleeding when blood vessels are cut. Normally, long strands of fibrin weave a mesh around platelets and blood cells to form a clot that plugs the break in the wall of a vessel.

A very complex series of reactions activates the clotting process. The release of thrombin ultimately results in the production of a substance called soluble fibrin monomer (SFM). SFM is a sticky protein that increases blood viscosity (thickness) and results in the deposit of fibrin on the endothelial cells lining the blood vessels. Normally, a single burst of thrombin would generate a large amount of SFM that would produce strands of "cross linked" fibrin, resulting in an actual clot. However, in CFS/FMS and other chronic conditions, continuous generation of low levels of thrombin can occur. The result is hypercoagulation.

There are at least three possible causes or contributing factors:

Virii, bacteria, mycoplasmas, and/or parasites activate certain antibodies in the immune system that trigger the production of thrombin, generate SFM and result in fibrin deposits.
Genetic coagulation defects can lead to hypercoagulation. White people are susceptible to this and black people have a resistance to it.
Chemical exposure can result in changes that trigger the coagulation process.
The results of this thickened blood are:
When fibrin coats the walls of the capillaries, nutrient and oxygen delivery to muscle, nerve, bone and organ tissue is compromised.
The fibrin coating the capillaries and producing thick blood can make virii and bacteria less accessible to treatment.
Thicker blood is harder to pump.
By depriving the gut of proper nourishment, hypercoagulation may be a major factor in IBS. If the bowel is deprived of blood, cells will die too rapidly.
The endothelial cells lining the capillaries are the source of heparans, the body's natural blood thinners. When fibrin coats these cells, the heparans cannot be released, reducing the body's ability to dissolve the fibrin.
Hypercoagulation can be detected by Hemex Laboratories' ISAC (Immune System Activation of Coagulation) test panel. Five substances are measured, and abnormal results on any two are considered a positive test result. Studies show that 79-92% of CFS/FMS patients have a hypercoagulation defect. A standard coagulation work up usually will not detect any abnormalities, since it only assesses the risk of actual clotting. The ISAC panel is 10 to 20 times more sensitive, as well as being more expensive.

In a 1998 study, heparin was given to 7 FMS and 9 CFS patients suffering from hypercoagulation. Of the 7 FMS patients, 1 reported some, 3 moderate, and 3 significant improvement. Of the 9 CFS patients, 4 reported moderate and 5 significant improvement.

Since then, David Berg has learned that the best chance of success involves treating both the hypercoagulation and the underlying pathogen(s). Ideally, a blood thinner such as heparin is prescribed one month before beginning antibiotics for bacteria (for example mycoplasma or chlamydia pneumonia) and/or transfer factor for viruses (such as HHV6, CMV and EBV). The heparin is continued throughout, and then slightly beyond, the course of anti-microbial treatment. It dissolves the fibrin, making the virus and/or bacteria more vulnerable, thus improving the treatment's effectiveness.

CFS/FMS patients who have been ill for more than ten years may show only one abnormality - or possibly none - on the ISAC test. A trial of heparin, however, especially if accompanied by antibiotics or transfer factor, may change that. Berg suspects that once a pathogen has a large area of fibrin deposits in which to settle, the less active it needs to be. It may therefore stop triggering the coagulation process. As the heparin removes the fibrin and allows a more effective attack against the pathogens, they reactivate and/or become more active, once again triggering the coagulation process. Most patients have more abnormalities on the ISAC test one month into treatment than on their initial test, indicating progress. They often must pass through a time of increased illness when the infection is temporarily activated.

The treatment of this condition is not easy or inexpensive. It requires a doctor who is familiar with the theory, comfortable with the lab testing and willing to individualize treatment.