Pernicious Anemia and Hydroxy B12-Help Please

[garyfritz]

I'm also taking about 30-50mg of dibencozide per week. As per current Freddd recommendations, I take the dibencozide on a day that I don't do any mB12, just to make sure the absorption of one doesn't interfere with the other. For whatever that's worth to you.

FWIW: I've been experimenting with the B12 oils. They come in various forms, including methyl-only and adeno/methyl blends. Greg, the expert behind those oils (PhD biochemist who has been studying B12 over 25 years) believes the ad/me ratio in the blended oil is appropriate for most people, and he says many people with CFS have gotten good results with it. So obviously he doesn't think ado and me interfere with each other.

I got great results with the oils for a month, then due to some mixups I changed what I was using and started feeling like crap again. I eventually figured out that the "feel great" time was apparently using 3x/day of the ad/me blend, then I switched to 1/day ad/me and 2/day mehtyl, and that didn't work at ALL. I've been back on 3/day ad/me for about 5 days now and I'm feeling much better.

I'm really puzzled why the methyl-heavy regimen didn't work. I started taking mB12 in August 2013, and 500-1000 mcg/day of mB12 totally removed ALL symptoms I was suffering. For about 6 months. Then I found this place and started experimenting with different stuff. Straight mB12 still seemed to have a strong effect on me -- e.g. I could wake in the night with symptoms and take a shot of mB12 spray or a Country Life sublingual, and within 2-3 minutes I could feel the tension draining out of my muscles. Within 5 minutes I'd be asleep.

So methyl WAS a key piece for me. I don't know why "lots of methyl and a bit of adeno" didn't work in the last few weeks. "Fair amount of methyl and about 3x as much adeno" seems to be working much better. For now. Next month it may shift again......

 

[whodathunkit]

@gracee41: Just got my ferritin level back. It was 41. First normal reading in over 3 years. I'm sure I've been anemic for much longer than that but I never went to the doctor on a regular basis before about three years ago.

My all-time recorded low for ferritin was 9 early this year when I was just starting methylation and B12. Three months ago it was 19, before I tightened up and got religious about taking the proper dose every single day, along with the vitamin C. I got really annoyed when my last blood test came in so low, but I hadn't been careful about taking a largish dose of iron every day, in conjunction with vitamin C, on empty stomach, with no other minerals to interfere with absorption, etc. I had been lackadaisical with that because of all the other stuff I take and the trouble of juggling it. Now I'm not lackadaisical any more and got pretty good results.

Also, my opinion is that my body needed to get healed enough to properly use the B12 I'd been taking. It's fairly well known that just because you're taking B12 and you have a normal or even high level in your serum test that your body isn't necessarily able to put it to proper use. I can't prove it but I've believed for some time that my bod needed to get "saturated" with the B12's before I could get really health again. I need quite a bit for optimal health, at least at this stage of the game. The pattern of healing that I've experienced led me to this belief. The increasing wellness and overall stability I'm currently experiencing (along with my little impromptu Bailey's experiment over Thanksgiving ) at continued largish dosage seems to confirm this.

Anyway, just thought I'd pass that along. I hope you find it a little bit encouraging.

 

[physicsstudent13]

I was vomiting and was bedridden with chronic fatigue after losing a lot of blood from tracheotomy Now about a year later I am still exhausted from pulmonary disease/sleep apnea and taking B complex injections. I had hemolysis on a blood test
I was given a course of iron as a child and think I may be anemic so I should probably go to a hematologist for B12 and B complex and Vit C, Iron injections for the rest of my life?

 

[Freddd]

FWIW: I've been experimenting with the B12 oils. They come in various forms, including methyl-only and adeno/methyl blends. Greg, the expert behind those oils (PhD biochemist who has been studying B12 over 25 years) believes the ad/me ratio in the blended oil is appropriate for most people, and he says many people with CFS have gotten good results with it. So obviously he doesn't think ado and me interfere with each other.

I got great results with the oils for a month, then due to some mixups I changed what I was using and started feeling like crap again. I eventually figured out that the "feel great" time was apparently using 3x/day of the ad/me blend, then I switched to 1/day ad/me and 2/day mehtyl, and that didn't work at ALL. I've been back on 3/day ad/me for about 5 days now and I'm feeling much better.

I'm really puzzled why the methyl-heavy regimen didn't work. I started taking mB12 in August 2013, and 500-1000 mcg/day of mB12 totally removed ALL symptoms I was suffering. For about 6 months. Then I found this place and started experimenting with different stuff. Straight mB12 still seemed to have a strong effect on me -- e.g. I could wake in the night with symptoms and take a shot of mB12 spray or a Country Life sublingual, and within 2-3 minutes I could feel the tension draining out of my muscles. Within 5 minutes I'd be asleep.

So methyl WAS a key piece for me. I don't know why "lots of methyl and a bit of adeno" didn't work in the last few weeks. "Fair amount of methyl and about 3x as much adeno" seems to be working much better. For now. Next month it may shift again......

Hi Garyfritz,

The effects of one B12 on another is a subtle thing and may only affect some people in certain specific ways. I am going to be detailed about the only person I know thoroughly, me. So, from more than a decade of trials I have found that I can have about half my AdoCbl need by conversion of MeCbl but that AdoCbl does not provide any MeCbl. Research I have read says that all other forms of cobalamins are generated from MeCbl. When people have done the careful titrations reaching limits on MeCbl before starting AdoCbl, for most diagnosed with CFS/FMS there are often 4 separate sets of B12 startup effects, CNS-MeCbl, CNS-AdoCbl, body-MeCbl and body AdoCbl. This I share with a lot of people.

There are also multiple forms of MeCbl, and only one variety of them has excellent CNS healing qualities and at least one variety doesn't have any noticeable effects on the body either for me and people like me even when in hypersensitive mode. In mixing two different MeCbls can sometimes be additive on effects. However, if a CNS effective MeCbl and a CNS ineffective MeCbl are mixed, the CNS effectiveness goes down with the increase of the ineffective and disappears entirely by the time the CNS effective MeCbl is at 20% or below. Unfortunately, the same thing can occur with AdoCbl, HyCbl and CyCbl. The AdoCbl as the percentage compared to MeCbl in the brain, as the AdoCbl level increases mood changes. The person becomes more generally irritable and often depressed. Then the CNS remyelination stops and the neurological problems start worsening. AdoCbl has a blood serum halflife similar to that of MeCbl, parts of hours to perhaps a day as the level sinks. The mitochondrial halflife of AdoCbl appears to be about 71 days.

Some people need daily AdoCbl in relatively large amounts daily, like my daughter. I might speculate that perhaps the situation was that she couldn't convert MeCbl to AdoCbl so she needed it in circulation all the time. It also appeared that for her, the MeCbl might have been blocking (competing?) the AdoCbl.

This "blocking" has been known or suspected in terms of HyCbl and CyCbl for decades. It is also clear that folic acid and other folates can compete with and/or block L-methylfolate. Only people who's balance point is precarious is going to be much affected by it or think of asking the questions. A lot of these problems have never been studies because of the decades wasted on studying CyCbl and the standard is based on CyCbl and noting else is worse so compared to CyCbl anything else can increase effects instead.

 

[physicsstudent13]

by the way so where can I get cheap injections of b12 and other supplements? at these asian pharmacies they sold b complex for low cost. So basically I only need to take methyl b12, methyl folate and potassium and l carnitine to start the repair of damaged blood cells and restore neurological function?
I've been disabled by sleep apnea and asthma I think from a degeneration of neurons in the brain stem. the automatic neurons or other brain cells aren't working so i never reach stage 3 slow wave sleep and I have seizure like PLMD and possible anemia, definite low iron. I tried subcutaneous injections in the back of the neck and that gave me a lot of muscle soreness, maybe low potassium?
anyway I started getting raised heartbeat of 125 dangerously high constantly I don't know if it was the B injections I started or low oxygen from uncontrolled sleep apnea. and now I have strange right chest soreness which might be arrythmia

so basically I was so exhausted after the trach surgery because I had pernicious anemia from the bleeding? but 3 hospitals didn't give me a transfusion or iron/vitamins/b12 for that it was ridiculous

 

[melamine]

@physicsstudent13 - If you are getting a reaction to B vitamins it has been my experience that it will be within minutes of ingesting them and will require lowering the dose. Anything later is apt to be something else. @Freddd and others here with more experience combining methylB12 and methylFolate would have a better idea of when side effects might occur. Potassium can cause raised heartbeat.

Surgery is likely to be more exhausting if you are anemic, even if you don't bleed.

Transfusions of B12, vitamins and iron are generally not done by hospitals because they are rarely emergencies. If your blood work shows that you are anemic, it is the doctors' responsibility to tell you and advise you on what to do about it. If they don't, it is up to you to ask them the cause and/or find the cause yourself and treat it. Doctors are known to ignore abnormal labs that are not in the extreme range of abnormal and to fail to advise patients about treatment.

 

[physicsstudent13]

the hospital never did blood work and I was so exhausted I was bedridden for 8 weeks, they should have given me large doses of IV vitamins and a transfusion. I was so DAMAGED I couldn't even speak or think at a normal speed after the blood loss.

there was no way I could have known and I was disabled after the operation

 

[melamine]

the hospital never did blood work

It would be negligent for the hospital to perform surgery without having recent blood work. Do you know how much blood you lost? Are you sure you did not get a bad reaction to something else having to do with the surgery and your health going into it? I never recovered from outpatient surgery that had nothing to do with blood loss or anemia, so that is why I am asking. Anyway, no one here can answer why the hospital was negligent. It's not so unusual. I am glad the Myers Cocktail and vitamin IVs stopped your nausea and vomiting. You were very lucky to find a safe, effective treatment.

 

[physicsstudent13]

I had tracheotomy and when I woke up I was so damaged I could barely speak and was bedridden for 8 weeks (I had 0 energy and felt I was close to death). The hospital didn't do blood work after the surgery. The surgeon botched the surgery by traching me on a size 6 shiley and I was dizzy with asthma and I was really worried my liver was failing with 80/260 AST/ALT but I was stuck in this nursing home for recovery for 1 month barely able to speak or eat. The hepatologist said it could have been the anesthesia or a drop in blood pressure...
I was treated for anemia as a child but my parents never continued the treatment. My hemoglobin is usually ok, but my iron is sometimes low, sometimes low MCV. I was able to buy low cost Iron Dextran injections but you have to be careful you don't overdose and get organ damage from it

 

[melamine]

@physicsstudent13 - When doctors and hospitals do anything negligent they have incentive to do no follow-up, and if your insurance is not to their liking, they are incentivized to move you out as quickly as possible. Unfortunately, patients are often too sick to advocate for themselves in a timely way and that was apparently your situation. If the hepatologist thinks the anesthesia or drop in blood pressure could have been a problem - in addition to any negligence by doctors and your health status at the time of surgery, those are all things that could collectively make for a much worse outcome. The sooner you are able to put it behind you the better your healing will go.

It is sometimes better to continue doing nothing for awhile but rest, eat well, avoid stress, etc., and continue using anything that is safe and you have found to be helpful, than to start new things that can potentially stress your body before it's ready, like methylating. It seems to me you have other issues that need addressing before that, but I could be wrong. I don't know anything about finding or using Myers Cocktail.
B12 cyano is not useful. HydroxyB12 is another alternative. B12 oils are being tried with success. If you check out the blogs here you should find one that talks about using it and where to get it, or type into Search.

 

[physicsstudent13]

by the way what happened with your surgery (feel free to IM me)?
so you find hydroxy b12 the most effective more than methyl or adeno b12? vitamin C is also helpful if you have asthma and I cannot exhale because of it (the double Nobel laureate Pauling believed in it).
yeah I'm injecting 4ml of b complex daily which is 200mcg cyanocobalamin and I'm still exhausted? maybe the iron dextran helps, I'm not sure

 

[melamine]

what happened with your surgery

I had pre-existing post-viral CFS/ME at the time of outpatient surgery that involved a lot of dental anesthetic, some kind of pain killer that I don't recall, and antibiotic. I did not end up in the condition you did, but after nearly passing out after the surgery from what I came to know later to be a cardiotoxic hypotensive reaction, I went on to develop a succession of new symptoms, which later evolved into lowered immunity, more unusual infections, autoimmune manifestations...

I experienced an unusual amount of swelling after the surgery, which was for scar revision. The first noticeable symptom that should not have been a result of the surgery was that my intestines seized up and would not move. This happened withing 24 hours and never resolved until I stopped taking a medicine I had been taking in the lowest dose and had never had any problem with. It was not a very necessary or helpful med, so I just stopped it after a few months of trial and error. From then on, as long as I did not use it I was able to have a bowel movement. With it, I was not, without using the strongest kind of medicine of the kind one could not use on a daily basis. The functioning of my bowels had been permanently altered in some way.

There were skin changes, poor healing, increased PEM. Then a neuromuscular symptom, IBS, cardiac, increased cognitive symptoms. After a few years of new symptoms the preexisting ones tended to worsen and become pervasive rather than post-exertional only.

Much of this began before the days of internet, so information was non-existent for the most part. I was exercising a lot at the time and possibly pushed too hard at times, but more recently I've come to believe that the drugs that were involved in the surgery - the anesthetic, pain killer, and/or antibiotic - one or more of them together were toxic to me or had altered my gut environment in some life-altering way. I needed quite a few dental surgeries in years following and became more sensitive to these same substances at times, yet my experience with them has not been entirely consistent, which has made it hard to say exactly what caused what.

I have 3 kinds of B12 excluding cyano that I am rotating experimentally. I will be trying the oil at some point, which is supposed to be a balanced formula of adeno and methyl. Hydroxy is recommended for those sensitive to methyl.
If you want an oral B formula that does not contain cyano, Swanson Brands makes a good one. A good multi with low amounts of good Bs is Amy Yasko's All In One. You probably know to take iron with Vitamin C for best absorption. Have you tried a good oral iron supplement? I am not sure if it is better to take it with vitamin c supp. or natural, as in orange juice.

Since you have asthma I would recommend that you take a look at a probiotic, biofilm spray that I have been using. It seems to help when I use it frequently throughout the day, spraying the room as well as directly up my nose and in my mouth while breathing in. The original brand was PIP, but they've changed the name: http://www.p2probioticpower.com/

 

[physicsstudent13]

Have you had great cognitive function and energy on the b12 or other protocol? I ordered the hydroxy b12 it was a great deal of money for me. I've tried GNC probiotics but it never did anything for my asthma. I still cannot EXHALE after taking azithromycin (it started 2 months after taking 6 weeks of amycin). Does this one help, do you have asthma?

 

[melamine]

All the B12s seem to make me tired. Never any energy unless negative, stiffening energy, but I am not typical. It looks like you will be experimenting to see which of the B12s you like best.
No, I don't have asthma but I do have chronic upper respiratory congestion and rawness. I'm happy with the results I'm getting with the probiotic spray so far. It's also supposed to be very effective against allergens like dust mite debris, which is said to aggravate asthma.

I would look into alternatives to antibiotics for long term treatment of your asthma, and I would stop any medicine that was causing a side effect of not being able to exhale. Here is something you might find useful. I like his comparatively more relaxed approach to the dietary measures he found helpful: http://jdmoyer.com/2010/07/17/how-i-cured-my-asthma-with-one-simple-lifestyle-change/

 

[physicsstudent13]

I was extremely damaged and near death after my operation I think with pernicious anemia. I'm afraid I was brain damaged from the loss of blood and liver damage high AST/ALT. I couldn't even speak and I can't still speak well and am foggy after the trach operation.

Is it dangerous to do daily injections of 1ml/100mg iron dextran? In december my Iron was low on a blood test at 19 I've started hydroxy b12 after methyl b12 didn't seem to do anything (also mfol). My stool colors are also yellow so maybe I am not getting enough dietary iron.
I'm not sure this calculator is accurate enough to do safe iron dosing. I've been taking daily iron tablets of ferrous sulfate at about 170mg of elemental iron (650mg FS) since december 2013.

http://www.globalrph.com/irondextran.cgi

So I mean it's a complex thing, iron can be deadly and damage your organs in high doses but b vitamins may be ok since they are water soluable

If you have GI problems I wouldn't take dicyclomine since that reduces intestinal contractions. My terrible GI doctors gave me dicyclomine which probably reduces clearance of toxins from the body. You might consider inulin and probiotics, but I'm not sure they helped me. Also antibiotic resistance can be terrible, I also had strange and terrible infections with pseudemonas luteola with which didn't respond to any normal antibiotics or combos. You should check for diabetes which can cause lowered immunity. And try saline nasal rinses for congestion. I have a deviated septum and have nasal congestion because of it and can't exhale

 

[whodathunkit]

Iron dextran did terrible things to my blood sugar. Elevated blood glucose can be a side effect of this drug. I guess since dextrose is sugar so dextran is probably either dextrose or some derivative. I don't recommend it unless you've tried every other possible avenue and your iron just won't go up.

I have cured my anemia with 35mg/day of non-constipating non-heme iron supplements taken at the same time as vitamin C every day for three months. My ferritin was 13 in August/September, and 41 earlier this month after just three months of diligence with the supplements. Wish I'd just stuck with this regimen sooner instead of jerking around with the iron dextran. My biggest problem is I'm really anal about not taking iron with any other minerals and on an empty stomach for max absorption, so it can be hard to "schedule" into my regimen. But going to the trouble has definitely been worth it.

I use IronSorb by Jarrow. It really doesn't bother my stomach or cause any problems with constipation.

HTH. Good luck!

 

[melamine]

Maybe this website has additional information - http://www.irondisorders.org/absorption/
Wish you luck.

 

[physicsstudent13]

I was supplementing with 2 ferrous sulfate tablets daily for a year is that enough or maybe too much and I may have iron poisoning? I was still nauseous and vomiting after losing blood after surgery and during the winter would feel uncomfortably cold after the surgery. about 10 months later I started taking b12 injections. I also try to eat liver

 

[garyfritz]

Iron is toxic to adult males. (Children use a lot for their growing bodies, women use a lot in their monthly cycle.) You should not be taking iron unless your doctor has established a deficiency. I would get a doctor to check your levels.

 

[physicsstudent13]

yes I think that is much better than risking iron poisoning I didn't feel much better after taking a box of tot'hema which contains liquid iron and manganese and copper.

my iron saturation was low, 19% a year ago which is a long time but my ferritin is sometimes high my hemoglobin was about 14.2. If I take daily injections of b complex and 7000mcg a day of B12 is that going to damage my liver and kidneys and other organs? I mean the damage neurologically from b12 deficiency sounds terrible also
My neurologist friend has been taking 2500mcg a day of b12 for 30 years