This Is MS Multiple Sclerosis Community: Knowledge & Support

M, waiting for a call back from abbotsford re islnd dr inquiry...lost your email in crash...pls resend?

http://www.anapsid.org/cnd/diffdx/irondisease.html

I don't know anymore whether learning all this is just making us more frustrated as long as drs refuse to educate themselves...they block needed treatment thru their arrogance/ignorance/fear...my dna sample is sent but I still face a fight no doubt whatever the 'results' show...discouraging to say the least....each day is another struggle to manage an iron-poisoned body with no hope as far as mainstream drs go...they do recognize stroke, cirrhosis or heart attack...It shouldn't have to come to that.

When someone becomes truly anemic, their hemoglobin does not "bounce back", is what I understand. I feel fine of course, but ferritin seems to be the only criteria to look at according to my doctor. So he will not continue further. How low can the hemoglobin go safely? There's a man on the hemochromatosis forum that goes strictly by hemoglobin and the MCV... he's been dealing with this for 30 years, and said that ferritin for him was not a good indicator of iron storage because it took him another three years to fully de-iron and get rid of symptoms. In other words it took him years of monitoring hemoglobin to ascertain when he could stop. The fact that I had the low TIBC of 45 (45-75 reference range) and the transferrin saturation of 44% is not relevant according to my doctor and though I have not asked to refer me onward, my blood work is normal enough that in Canada no one is going to refer me to a hematologist. Originally, I had a ferritin of 66 and Steve Barfield said that I had an extra 6 g of iron stored. If that is the case, I could safely do 15-20 treatments before having alarm bells go off. Theoretically at least... is anyone else pursuing this are getting treatment?


April 1, 2010, after second phlebotomy

WBC 6.1 4.0-10.5
RBC 3.98 3.80-5.2
hemoglobin 123 120-150
hematocrit 0.37 0.35-0.45
Mean Cell Volume 92 82-98
Red Cell Distribution Width 13.1 12.1-14.5
Platelet Count 228 150-400
Neutrophils Absolute 4.7 2.00-6.00
Lymphocytes Absolute 1.38 1.00-4.00
Monocytes Absolute 0.39 0.10-0.80
Eosinophils Absolute 0.05 0.00-0.45
Basophils Absolute 0.02 0.00-0.10

Ferritin level 15 L 20-160

BORDERLINE/Low ferritin

-Reduced Iron Stores
-Rule out Blood Loss (GI, GU)
-If pre-menopausal, exclude Menorrhagia
-Recommend assessment of Occult Blood/Urinalysis if clinically indicated
-Consider Malnutrition
-If symptomatic of Iron Deficiency, suggest Iron Therapy

Research Shows Plasma Exchange Helps Multiple Sclerosis Patients
Main Category: Multiple Sclerosis
Article Date: 30 Apr 2009 - 2:00 PDT


Researchers at Aurora St. Luke's Medical Center in Milwaukee report that plasma exchange therapy or PLEX dramatically improves the health of multiple sclerosis patients who fail to respond to conventional therapies.

"There is no other treatment that brings about such a reversal in multiple sclerosis," says Bhupendra Khatri, M.D., the study's principal investigator and director of Aurora's Regional Multiple Sclerosis Center. "This treatment can turn lives around."

Over 25 years, Dr. Khatri and his team followed 271 patients with chronic and progressive multiple sclerosis. These patients had not responded to drug therapy and were experiencing an increasing decline in their motor and verbal abilities. Patients received weekly plasma exchange treatments for 10 weeks, with the pace of plasma exchange therapy slowing over time or as their condition improved.

Out of 271 patients, 217 or 80 percent, saw a long-term improvement in their disability.

Unlike conventional multiple sclerosis treatments, such as chemotherapy drugs, which can have serious side effects such as heart damage or leukemia, the plasma exchange therapy was found to be safe, with no serious side effects.

The study, "Sustained Long-Term Improvement in Disability with Plasma Exchange in Patients with Worsening Multiple Sclerosis: Results of a 25-Year Study," was presented April 29 at the American Academy of Neurology annual meeting in Seattle.

Dr. Khatri explained that patients with chronic, progressive multiple sclerosis may see their condition stabilize with conventional therapies, but they generally do not see any improvement in their condition. This is what makes the plasma exchange therapy all the more remarkable, according to Dr. Khatri. Not only did the majority of patients with worsening symptoms respond to plasma exchange, over time many patients found their weak limbs became stronger, their steps steadier and their speech clearer. Some grew strong enough that they could return to work.

Plasma exchange is a process where the patient's blood is run through a centrifuge, which separates out the plasma. The plasma is replaced with a synthetic fluid, and the blood is returned to the patient. Plasma exchange is thought to work because it filters out the agents that attack the nervous system. Once the bloodstream is cleared, the body has the opportunity to repair itself.

Multiple sclerosis is a disease where the body's immune system attacks the protective sheath surrounding the nerves. The National Multiple Sclerosis Society estimates 400,000 people in the United States have the disease. There is no cure for multiple sclerosis though there are several drugs that can slow or stop its progress. Symptoms can include blurred vision, loss of coordination and short-term or long-term memory loss.

Multiple sclerosis has been linked to vitamin D deficiency, and its geographic distribution is tied to sunshine. One in 500 Wisconsin residents have multiple sclerosis, while one in 10,000 Texans have the disease.

Aurora Health Care is a not-for-profit health care provider and a national leader in efforts to improve the quality of health care. Aurora offers care at sites in more than 90 communities throughout eastern Wisconsin.

Merlyn,
I think the reason the plasmapheresis works for some MS is that it must work on the immune angle--it would get rid of the antibodies I think.
Plasma exchange would have nothing to do with the Iron in the blood cells.

Shye-yes, I do believe you are right, however I still want to keep my iron very low because of the fact that it feeds any pathological organism. I will not rest until I have this treatment, considering the way that I reacted to the phlebotomy...

http://www.expert-reviews.com/doi/pdf/10.1586/eci.09.42

Merlyn,
I'd appreciate you input--
my iron levels were done again on 4/6/10- but were not fasting (did not realize they would run the iron test with the blood they drew for other tests)--
this time results were:
total iron 137 (ref 40-160)
TIBC 253 (250-450)
Transferrin Sat 54 H (15-50%) but see for Females is (14-45)
ferritin 75 (20-288)
again, not fasting, and did have red meat for breakfast, before test--AND have had at least 7 more chelations since last iron done

NOTE: Hematocrit is fine 35.1 (35.0-45. %)
Hemoglobin is fine 12.1 (11.7-15.5 g/dL)

previous tests:
my NON_FASTING iron prior to chelation:
total 82 (40-160)
TIBC 244 L (250-450)
trans sat 34 (15-50)
Ferritin 103 (20-288)

after 2 chelations, and FASTING:
Total 138
TIBC 301
Trans Sat 46
Ferritin 79

It looks to me like the EDTA chelation is somehow affecting the trans sat level--for the worse; although the ferritin has decreased. NOTE: the chelation drip has a number of grams of vit C in it! (which increases absorption of iron).
Some of my other bloods are off also, platelet and RBC just a tad low.
Know i need extra zinc, and my thought is the chelation is taking too much zinc out, with affects the iron.
I am going to up the Zinc supplements (and copper also), and redo bloods in 3-4 weeks.
What I am pondering, is donating blood also. they take a pint, and my dr thinks that the slightly low RBC and platelet count would not deter them from taking blood. My dr is not too involved in this iron thing--kind of tolerating me and taking the bloods for the tests, but not really listening to me about why. She would get active of course if results were REALLY bad. So on my own with this at the moment.
You seem to have researched this pretty well, so I'd greatly appreciate any input. Thanks

I don't know this for a fact but I would think perhaps plazma exchange logically would rid the blood of porphyrins...as opposed to the 'autoimune' theory? I'm sorry to say I in no way believe in the autoimmune scam....just my opinion...no offense intended if by autoimmune, they mean the body's natural inflamatory response to an invader ..that I can go with....

Interesting Katie45--you've really got my interest here--will need to look further at the plasmapheresis...

Shye, Bethr has more info on porphyria ...she has been diagnosed. I'm just spouting what I think and hoping I'll still be here to watch the s...hit the fan.( that worked out well didn't it) lol

Well I gave blood for my first time. It was easy, didn't hurt at all and I hate needles. I can go again on 6/17/10 and I AM going:-)
My results so far which is only one day are:
I couldn't sleep at all-I was NOT tired. This is a first, normally I take naps and sleep a lot.
My legs don't seem to be so stiff. I am not walking better but it is early and I haven't had much sleep so they may be really tired. Might be to early to tell yet.
I am amazed at not being tired though. There is NOTHING else to attribute this to because that is ALL that I have done different.
Will post further updates as they occur. I am pleased so far with the results.
Debbie_K

Shye-I think the EDTA seems to be working for you. I saw a new ND yesterday and we removed 100 mL of blood, but I cannot keep dumping the river of life LOL because my hemoglobin and RBC is not bouncing back properly. So we are going to be testing for digestive problems/Candida...

http://www.docgeorge.com/Toxic-Gut-Test ... -Test.html

I was on antibiotics, everyday for literally four years. Chronic bladder infections almost killed me, because I was developing super infections. When I had 16 fillings removed, the infections stopped. But I wiped out my digestion/gut flora, and had a gut full of Pseudomonas and strep B... I don't believe I have ever managed to reimplant any of the proper bacteria like acidophilus and bifidus even though I have consumed bottle after bottle of probiotics, make my own yogurt, make my own sauerkraut... it seems almost impossible to correct... try getting some blood, see if it makes you feel any different from the EDTA... but then again I am a guinea pig and don't mind self experimenting.

Hey everyone, glad to see your back in here.
Shye, your transferrin saturation is a worry to me.
That was definitely my trigger. I feel so good now that it is down to low 40's, no fatigue now, but still awake in the middle of the night for my nightly "session of insomnia", I'm getting used to it now, and go with the flow, a good research time So long as i get my 7 hours I'm sweet. You definitely have an iron thing going on there IMHO.
Iron is very toxic for anyone with Porphyria, all metals are.
My theory is that the stiff joints (knees and hip in my case), and heavy fatigue is the iron effect. The neurological symptoms are the porphyrins or a combination. Once the iron gets highly saturated, the porphyrins start to increase causing the neurological effect. The cup runneth over, so to speak. Add in a dose of unsafe drugs, ie: my dental injection and you are history. That has happened twice to me, with the accompanying brain lesion, and also in both cases Epilepsy.

What about the latest studies from Maria De Sousa, really interesting, her studies have found that ferritin levels/iron metabolism is controlled by the Killer-T's (lymphocytes). And people who get high ferritin because of hemochromatosis always have low levels of lymphocytes. But what happens to the iron in people with high lymphocytes? Do people with MS generally have low or high lymphocyte levels. Any study results available?

I have extremely high levels of lymphocytes (due to splenectomy after a car accident 35 yrs ago). So I differ from the normal hemochromatosis person. This may be why I respond to the blood draws in miraculous ways, I just don't know the answer to that, or why I don't load ferritin like classic HH does, but still get the bad effects.

My iron levels are halved and I'm great, energetic and frisky again
But with a lot of heart antics going on, probably a neurological effect as I feel better with exercise, lying down brings it on and it feels electric.
Solution - Keep moving

Merlyn
sounds like the blood letting worked for you--I'm sorry it is not the full answer.
Re: super candida, etc.
About 6 mos ago I was given Clindamyacin for abscessed tooth--ended up with on and off diarrhea for several months, and used LOTS of Boulardii (this is the yeast that is about the only thing that attacks C. Difficile, which is what overgrows in gut in response to Climdamycin) and organo oil. Then had another root canal infection, and since I am allergic to penicillin, was given clindamyacin once again. From what I ahd read, if I had any of previous infection left, would get severe reaction--I stupidly chanced it--ended up with severe diarrhea--stopped the clindamyacin immediately, and super amts of Boulardii and Orgeno Oil, and 10 B Acididophoulus and Bifidus per day--all for 2 months--now tapered down, only 1 Boulardii per day, and 5 B of other, and no more oregano oil--but it seems to have been the answer. I also took Reuteri every other day.

So might be worth your checking into Boulardii, and Oregano Oil, and possibly Reuteri (I was not breast fed, and reuteri would have been implanted if I had been--even at this late date could still need it). Lots of literature out there.

Did talk further wtih my Dr re my iron--we did one more fasting panel, and also the genetic test for hemachromatosis--will get results of both on may 18th. (she is on vacation til then-so also no chelation til then). Should be interesting. If I have it, she will give script for phlebotomy--if gene test not postive, she said she will still work with me re: what to do about bringing the iron lower than it is. re: MS, brain, etc. I know I can give blood once every 60 days, so will at least do that, but willl not start til get results on the 18th.