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Macrocytosis persisting

Messages
54
Location
Montreal, Canada
I am new to this Forum... glad to have found it. I have a 20 year history of ill health, and an "officical" diagnosis of CFS. I now know that the underlying problem is a combination of genetic blocks in the Folate/methylation and CBS cycle and this has left me with persistant infections of Lyme and Chlamydia Pneumonia and also serious Lead toxicity ( from renovating and old house.... I stripped off all the old paint using a hot-air gun )

Attempts over the past 7 years to treat the infections and chelate the Lead have just made me feel "poisoned" and all this has been exaccerbated since, 5 years ago I was diagnosed with Hemochromatosis ( a genetic disease which causes high Iron levels ) The treatment for this is to have regular removal of blood. Now I know that this helped the iron levels to come down, but because I have MTHFR C677T +/+, it made the Folate deficiency even worse.

5 years ago my MCV was 102. Following the de-ironing it came down the expected 5% to 97%, but has steadily risen since then and it is now 107. My red blood cells are 3.63 (3.8-5.00) and my Platelets
are133 ( 140-440)

I started taking Folapro, 800mcg and Hydroxy B12 2,000mcg and Adenosyl B12 2,000mcg in July last year. Didn't notice any reaction with the HB12, but did get very bad headaches with the AdB12 at first, and had to start with a lower dose. Adding in Methyl-B12 produces a huge detox reaction.... I can just about tolerate 2,000mcg.... but even with that I have a VERY strong metallic taste in my mouth.

My MCV has not improved at all since I started this treatment. I don't see many people mentioning high MCV, but I think mine is pretty bad...... is it? I suspect that the doses I am on are not even touching the deficit What do I do?
 

Red04

Senior Member
Messages
179
Did you ever titrate potassium? When you get that huge detox, you may titrate potassium until it goes away. My wife got very "pointed" headaches that were relieved with potassium.

You have to be careful with the dosages. I think the easiest way is to take 3-4 99mg pills every 45 minutes with a lot of water. There is some danger with contact time and the stomach lining. That's why they are limited to 99mg pills. But many need several times that. I think 900-1200mg would normally subside my wife's potassium def symptoms.

If that works, then you can titrate up the mb12 ad12 and methylfolate according to freddds latest.

You may describe your detox symptoms a little more and that may give us a better idea as well.
 

dbkita

Senior Member
Messages
655
I am new to this Forum... glad to have found it. I have a 20 year history of ill health, and an "officical" diagnosis of CFS. I now know that the underlying problem is a combination of genetic blocks in the Folate/methylation and CBS cycle and this has left me with persistant infections of Lyme and Chlamydia Pneumonia and also serious Lead toxicity ( from renovating and old house.... I stripped off all the old paint using a hot-air gun )

Attempts over the past 7 years to treat the infections and chelate the Lead have just made me feel "poisoned" and all this has been exaccerbated since, 5 years ago I was diagnosed with Hemochromatosis ( a genetic disease which causes high Iron levels ) The treatment for this is to have regular removal of blood. Now I know that this helped the iron levels to come down, but because I have MTHFR C677T +/+, it made the Folate deficiency even worse.

5 years ago my MCV was 102. Following the de-ironing it came down the expected 5% to 97%, but has steadily risen since then and it is now 107. My red blood cells are 3.63 (3.8-5.00) and my Platelets
are133 ( 140-440)

I started taking Folapro, 800mcg and Hydroxy B12 2,000mcg and Adenosyl B12 2,000mcg in July last year. Didn't notice any reaction with the HB12, but did get very bad headaches with the AdB12 at first, and had to start with a lower dose. Adding in Methyl-B12 produces a huge detox reaction.... I can just about tolerate 2,000mcg.... but even with that I have a VERY strong metallic taste in my mouth.

My MCV has not improved at all since I started this treatment. I don't see many people mentioning high MCV, but I think mine is pretty bad...... is it? I suspect that the doses I am on are not even touching the deficit What do I do?
I have had borderline MCV for many years also. Ironically while methylation support has helped other things it has not aided my MCV at all.

I would caution there are other reasons for high MCV values. For example hypothyroidism. So don't be too eager to rush the methylation support. It will almost invariably be useful but you have to find the right balance slowly and give things time. Contrary to what many espouse on these forums, it is easy to overshoot the mark and it need not have anything to do with startup effects (at least you will be able to judge that a few months in).

On the other hand the metallic taste symptom is almost certainly a startup effect. For me it was when taking adb12 2500 mcg per day sublingual. Taking zinc fixed that in several weeks. But that was just me maybe.
 
Messages
54
Location
Montreal, Canada
Did you ever titrate potassium? When you get that huge detox, you may titrate potassium until it goes away. My wife got very "pointed" headaches that were relieved with potassium.

You have to be careful with the dosages. I think the easiest way is to take 3-4 99mg pills every 45 minutes with a lot of water. There is some danger with contact time and the stomach lining. That's why they are limited to 99mg pills. But many need several times that. I think 900-1200mg would normally subside my wife's potassium def symptoms.

If that works, then you can titrate up the mb12 ad12 and methylfolate according to freddds latest.

You may describe your detox symptoms a little more and that may give us a better idea as well.


I have been taking Potassium Citrate, 99mg twice a day, since I started getting painful muscle cramps in my feet after starting the Methylation supplemets. Have had my Potassium levels checked a few times and they are OK.
Detox symptoms are feeling flu-ish, hot ( though no fever.... as if I am fighting an infection ), nausea, diarrhoea, but mostly a VERY strong metallic taste in my mouth.
 
Messages
54
Location
Montreal, Canada
I have had borderline MCV for many years also. Ironically while methylation support has helped other things it has not aided my MCV at all.

I would caution there are other reasons for high MCV values. For example hypothyroidism. So don't be too eager to rush the methylation support. It will almost invariably be useful but you have to find the right balance slowly and give things time. Contrary to what many espouse on these forums, it is easy to overshoot the mark and it need not have anything to do with startup effects (at least you will be able to judge that a few months in).

On the other hand the metallic taste symptom is almost certainly a startup effect. For me it was when taking adb12 2500 mcg per day sublingual. Taking zinc fixed that in several weeks. But that was just me maybe.


My thyroid is OK.... I have just had a full panel done again. I had a Vitamin Diagnostics panel done, and also the Yasko gene test. Rick Von K told me I had a Methylation block. My Folate was low, even on a regular blood test.
I have taken Zinc.... it helps raise Metallothionine, which aids in clearing Heavy Metals. But, when I take Zinc, my Ferritin levels fall quite dramatically. Zinc competes with Iron for absorbtion.... in some people worse than others..... I guess that is me!
 

Red04

Senior Member
Messages
179
I have been taking Potassium Citrate, 99mg twice a day, since I started getting painful muscle cramps in my feet after starting the Methylation supplemets. Have had my Potassium levels checked a few times and they are OK.
Detox symptoms are feeling flu-ish, hot ( though no fever.... as if I am fighting an infection ), nausea, diarrhoea, but mostly a VERY strong metallic taste in my mouth.

The RDA for potassium is 3500mg. So adding 99mg twice a day, you are only supplementing 6% of you daily allowance. I would consider titrating up the potassium until you see a relief/reaction, or non-reaction. Your serum potassium can fluctuate throughout the day as well, so getting tested a few times randomly may not quite tell the whole story. Where you may be deficient at different times of the day. I would look into Zinc and all the basic cofactors as well. A,D,E,C, calcium, magnesium, multi B, omegas, etc...

Also, my wife responds a lot better to 2400-4800 mcg methylfolate (via Freddds protocol) over the 800mcg dosages you stated above. Of course, titrate slowly if you plan to reach those dosages.

Freddd's protocol would be to titrate more potassium and more methylfolate and all the cofactors in place. The trick is recognizing the "detox" symptoms as either potassium or methylfolate symptoms and titrate accordingly. To get through it you almost have to forget the idea of "detox" altogether. Rich's protocol would be to keep at the lower dosages, low and slow at a tolerable level. My wife got through Freddd's protocol startup symptoms pretty quickly. Maybe a few weeks of huge potassium demand, headaches, emotions, IBS fluctuations and then things leveled off. Then a few months to see relief of 90% of the symptoms. Others seem to have a harder time with it and must stop altogether. My wifes thyroid was tested like crazy, a panel from every doctor, a falling and rising test, where they would test her, inject her, test her to watch the thyroids reaction. Her thyroid was always rock solid. She was always boderline anemic and had boderline iron problems, but her ferritin and bloodwork were typically "in range" before methylation. I never really got a handle that part of it. When she had bloodwork for her pregnancy (1.5 years into methylation supplements) the doctor suggested supplementing iron, but I didn't really look into it. Let us know if you make progress. I may go pull my wifes bloodwork spreadsheet tonight and look at her values again. That seems fitting for Valentines day.
 

aquariusgirl

Senior Member
Messages
1,732
I don't know how reliable a blood potassium test is? I believe rich would tell you you should probably do the exatest test for intracellular electrolytes if he were still w/us.

The lab director at quest (or was it labcorp) said in a letter in 2011 that he got more complaints about his labs potassium testing than anything else they do.

This is posted in the files section on the yahoo groups aldosteronism group. That is where I saw it.


As for the iron thing, I am sort of obsessed w/this right now. I believe we may all be functionally iron deficient due to lack of B2. Which may be cussing cerebral hypoxia.

In this scenario , I don't think oxygen sats would mean anything.

Sorry can't type on this stupid iPad....just my 2 cents