Just like Fredd?

Dear Rockt

I think I'm at about 90% improved. Some symptoms were pretty stubborn and have been consistently there for the 3 years and are just now fading away. The improvement from where I was to where I am now is dramatic. The worst of it was about 4-6 months and then it was continual improvement. Thank goodness!

 

Hi Idie,

Thanks for your reply -- that was helpful. Hope you don't mind a couple more nagging questions?

I'm wondering if you had any pych-type symptoms flare up, like agitation, anxiety, restlessness, racing mind? And/or the opposite -- depression, despondency, feelings of hopelessness?

You can PM me if you prefer.

Thanks again,

Dan

 

I certainly have Dan, following Fred's protocol. Some really bleak stuff happening, part of which I narrowed down to adb12.

PM me if you would like more info, but unfortunately I can't claim any answers.
Cheers
SJB

 

My wife had all the symptoms. Fibromyalgia, chronic flu symtoms, Extreme fatigue, a list of sleep disorders a mile long. She had been on some form of anxiety or depression meds for 10 years. She had to have jaw surgery due to her teeth grinding at night. Antibiotics and steroids for strep throat 6 times a year. You name it, she probably had it. She probably had 40 different prescriptions. We saw every specialist in Houston that would see her. Her GI doctor tested for celiac (negative), but he ran a B12 test and it was low. He put her on B12 injections (cyano)...no help and her B12 levels didn't come up. He was puzzled and prescribed a nasal spray.

By that time, I was on Wrong Diagnosis and off we went with Freddds Protocol. Large changes started happening after everything was in place. 90 days later she was 95% healed. If she stops the vitamins for about 10 days her symptoms come roaring back. She takes no presciption pills, she has no depression, anxiety, etc... She ran a triathalon 6 months after starting the protocol. She hasn't been sick or missed a day of work since.

The one lingering issue is that she doesn't sleep through the night, but who does? I think this may be because she was on sleeping meds for so long and expects to just go into a coma when you lay down. Plus her husband snoars.

If enough people are "healed" by the protocol and symptoms return when they stop, I would think that some of the mystery could be resolved. A repeatable problem with a repeatable "fix" would be advantageous to diagnose the cause.

 

Hi Dannybex,

Yes, I had depression, racing thoughts and a sense of being distant from things. I also struggled to cope with stress. My family tells me that they couldn't believe the difference when I started to improve. I think when you have suffered from these things for a long period they become your new normal. Once the protocol kicked and things got better, that become the new normal, if you know what I mean. .

 

Dear Red04,

I couldn't agree with you more. I'm glad that you posted because I think it is important for people to know that there are others out there who have the same experience in that, when the supplements are stopped the symptoms come back. For your wife it is 10 days, for me it is 3 days, for Fredd it is 3 days. Sure wish I knew what it would take to heal permanently, if that is even possible.

 

Hi Idie,

I would of course LOVE to have a 'new' normal -- I can totally relate to what you're saying, esp if these things come on so slowly and insiduously. One just gets used to things, even though deep down, you know it's not normal.

I had been prescribed b12 injections waaaay back in 2003, and didn't realize until a couple months back when I found some receipts that they were METHYLB12 injections. The doc I had back then also started me out with nebulized gluathione. I had my best semi 'rebound' for about a year after that, but was taking other things as well, and never made the connection that the b12 may have played a big role. In hindsight, in review, I'm pretty sure it did. But after last fall's disasterous multi-b12/multi-folic-folinic-folate overdosing (following another docs instructions) it's really spooked me from biting the bullet. Your story -- and others too -- has helped me reconsider.

Regarding the 'racing mind': If it's really bad, and/or you have a lot of anxiety w/your CFS/ME, it may -- may be due to copper overload/toxicity. From experts I've talked to lately, they think I may have it. One preliminary way to find out is to do a "Zinc Tally" test -- a liquid zinc supp that you hold in your mouth. If you get a strong metallic taste quite quickly, then you have sufficient zinc. But if you're like myself, and it tastes like plain water...then you're severely deficient, and that may be due to copper overload. If you have copper overload, then it's difficult to raise zinc levels, because they both share the same receptors. But that's another novel...

Just throwin' that out there.

Thanks again,

Dan

 

Thanks for telling your wife's story. Very encouraging. I know we're all different, and eat different diets, etc., but I'm curious about the other supps she takes -- are they the standards that Fred recommends?

 

She takes everything in freddds protocol except d-ribose. I think we could eliminate some of the supplements but like I said, it takes 7-10 days for her to react. This makes it difficult to optimize the protocol. At this point in time, it's easier to just take them all. (plus it works)

Also, she just takes them all in the morning. No PM dose. Her diet is terrible. She skips breakfast (maybe a smoothie) and has a snack for lunch. Then we eat fast food or takeout 3 times a week for dinner. She still has some minor digestion issues. But nothing worth going to a doctor for. Probably no more than me or an average person.

If anyone has any specific questions, I will be happy to answer. However, we aren't very scientific with it. Just take them all once a day. You can click on my name and read my early posts. It will give you an idea of our journey

 

Thanks Red04 for the reply. Sorry for my late reply...it's been a rocky rollercoaster, but hanging in there. Still losing weight however...not fun. But due to very low zinc levels and possibly high copper -- just sent in test kit for that today -- that could be why I'm having so much difficulty. That, and the low b12/folate...etc.

That's amazing that your wife recovered so quickly...I'd kill for some fast food!

Idie -- if you're still checking in -- I saw your post on the wrongdiagnosis forum where you mentioned that you got all tingly, cold, and had aching hands when you went from 400mcgs of Metafolin up to 800mcgs.

I was wondering how you resolved that. Did you reduce down to 400...then slowly move back up? I've had similar symptoms off and on -- mostly ON -- even without the metafolin, but am curious if perhaps that might be making things worse at times.

Thanks in advance,

Dan

 

Hi Dan,

I'm still here. I titrated up to 800 mcg of Solgar Metafolin and have been consistently on that dose for some time with no problems. I have something new to report. My upper left shoulder has buzzed/tingled for 3 years....the tingling is gone. It just up and stopped. It took 3 years for that to happen. Fredd always told me that healing goes through phases and that when you enter a new healing phase that symptoms can seem to worsen or intensify. He was right as I experienced all of that. My hands do still burn and throb sometimes. I have had that problem for several years so I'm hoping that that problem will eventually go away too. I have had a lot of ups and downs that I now attribute to healing. I will just reiterate that the first few months on Fredds protocol were the toughest because of all of the strange symptoms and reversals. I don't know how I did it but I stayed the course and I'm very glad I did. My digestion has finally improved too. No acid reflux and no gastritis....this has taken 3 years to get to this point as well. Suffice it to say that it took a long, long time.

 

Idie, a couple more questions, if you don't mind.

Do you get the injectable B12 via prescription or can you order it without? (I seem to recall Freddd mentioning something about B12 crystals, so wondering if you can mix up your own somehow).

Either way, how do you keep the B12 fresh? Freddd has stated that it is extremely sensitive to light, etc. and becomes useless if exposed.

I ask because I feel like I've plateaued on 3 MB12 sublinguals/day and I'm thinking about adding injections.

 

Hi Idie,
You may recognize me from the wrongdiagnosis forum. I have also had about 90% improvement of my b12 deficiency symptoms using Freddd's protocol. But my symptoms did not include chronic fatigue. I am chronically tired, but I function at about an 8 level.
When you say 90% improved, is that improvement from chronic fatigue?
Best Regards,
mogy

 

Just a comment but do you take Selenium in a dose of 200-400mg (or is it mcg?)/day? (I would go with the 400 dose if I had thyroid antibodies). There are plenty of studies (see ithyroid.com) that this is an absolute must if you have thryoid antibodies. I had such severe hyperthyroid that I had a hornet's nest buzzing in my head for most of a year and crazy-bad heart palpitations but when I figured out it was due to taking Iodoral and got off it, my thyroid is ok (no anti-bodies) probably because I also took selenium. I had heard long ago that the people that lived longest with that flesh-eating virus were those highest in selenium. I have a good respect for selenium after hearing that.

 

I am COMT +/+ and I can take any amount of MB12 or Mfolate with no problem. I would like to ask you how you know your homocysteine is fine? You did not report a value. I hope you are not relying on the lab reference range? See www.lef.org for lots of information on homocysteine (since William Falloon has genetically high homocysteine). They quote many studies in saying that homocysteine is supposed to be 6.3 and every 3 points above that is a 35% greater risk of stroke. So the reference range saying 12 os ok is not at all helpful. I general, never trust lab reference ranges because they do NOT filter out sick peole in making those ranges...they simply throw out the upper and lower 5%. It's pretty hokey how they come up with those ranges.

 

I think that some research results are getting forgotten in the shuffle. Research has shown that the Cerbral Spinal Fluid level of cobalamin is LOW in folks with CFS, FMS, ALS, MS, Parkinson's, SupraNuclear Palsy, Alzheimer's and others. The Japanese research on high dose methylb12 (50mg) indicates that this dose does gnerally succeed in penetration of the CSF by cobalamin and affecting the symptoms of those with some of these diseases. So there is a demostrated problem getting cobalamin into the CSF/CNS. Reserarch with intrathecal injection of mb12 (diabetic neuropathy) indicates some people retain cobalamin in the CSF well and some don't. This may differentiate those who develope the low CSF/CNS diseases from those who don't. It is suggestive. In one study the period of effectivness tied to CSF cobalamin level ranged from less than 3 months to more than 4 years. So some folks may have a double whammy; getting cobalamin into the CSF and keeping it there.

In the series of trials I and a few others carried out, we found that there is a CSF/CNS threshold effect where the SC injection achieved activity in the CNS starting at somewhere between 6 and 7.5mg. I also found that in order to have 24 hour sustained CNS activity required 4x7.5mg or 3x10mg. Another man found that 2x15mg also had 24 hour staying power. Since many of the folks with CFS and FMS have low CSF cobalamin levels many will benefit from CNS penetrating doses of mb12 and adb12, with separate response to each. A combined dose appears to work just as well so I either take Adb12 in a single tablet dose an hour after injecting or a 50mg dose once a week. I vary it to see if it makes a difference.

The 50mg sublingual dose produces essentially identical results to the 7.5-12.5mg SC injections. These can be used as a single challange dose to see if it is beneficial. However, for this to be effective a person has to have reached body saturation on mb12/adb12 or the body reaction completely overwhelms the much more subtle CNS response.

As the actual results a variety of people demonstrate, people with the set of symptoms, CFS/FMS/ME we are all familiar with here, benefit from body levels of b12 and folate, and many benefit form CNS/CSF penetrating doses and the amount of time between injections to maintain CNS activty varies from person to person. This is all 100% in agreement with the predictions one could make from the Japanese research. What we don't know is WHY there is trouble with cobalamin penetrating the CSF/CNS in the first place and why some people loose it so much more quickly.

 

[This is all 100% in agreement with the predictions one could make from the Japanese research./B]

Freddd, did you ever look further into intrathecal MB12 injection, as the Japanese study did, with good results for, I believe, diabetic neuropathy?

 

Hi Dan,

I would like to clarify my weight loss. I lost 85 pounds of water in too different burst of 40-45 pounds when I added certain things. I am taking Lasix which was rapidly becoming ineffective. I'm still on it becasue whatever is causing the edema dhas only diminished, not gone away. I also lost 40 pounds of fat and then put on at least that in muscle. I believe that these things are significant but I don't know how they fit in except for it also required the combination of adb12, mb12 and l-carnitine fumarate for the second batch of water and the muscle creation. THe l-carnitine-adb12 combo is also demonstrated as needed for neurological healing and neuron growth.

 

Hi Mogy,

Since your fatigue remains, what part of things did yu not include. For me aerobic exercise was essential to the process. Paper research indicates that exercise stimulates the building odf mitochondria needed to relieve fatigue and tired. That can also come as a feeling from the CSF/CNS level of things. In CFS that is a suspected factor that some of the fatigue is central.

I found my fatigue was helped by ALL of the following. Body level mb12, body level of adb12, cns level of mb12, cns level of adb12, SAM-e, l-carnitine fumarate (by far the BIGGEST kickstart) and finally metafolin.

 

Hi Rockt,

I keep mine fresh by keeping all the mixed vials in the freezer each wrapped in foil. Only the one I am using is in the frige. And that is always wrapped in foil and never expsoed to light. I also wrap the syringe in foil and draw by feel. During the mix I have the beaker wrapped in foil in a 100 deg water bath using a magnetic stirrer. For transfer to the vials from the beaker, I do it in a dark room with a red safelight only and then no direct exposure to light and do most of it by feel or barely seen.

Before you try injections, which are not as relaible as the 5 star sublinguals, try 50mg sublingual dose. You will know in a few hours if an injection would help. Also try a 50mg adb12 trial dose for the same reason, again after the body is at equilibrium.