Wrong Diagnosis Site - Fredd's Protocol

[Undisclosed]

Please note: This forum is specifically for persons with ME/CFS and other related NEIDs. It would be appropriate for those who have been diagnosed with B12 deficiency (no diagnosis of ME/CFS) to find a health forum that deals specifically with this issue.

Thank you. Kina.

 

[Rockt]

Please note: This forum is specifically for persons with ME/CFS and other related NEIDs. It would be appropriate for those who have been diagnosed with B12 deficiency (no diagnosis of ME/CFS) to find a health forum that deals specifically with this issue.

Thank you. Kina.

I wonder if we could hold off on this. I have many symptoms of CFS per the Canadian Concensus document, and am quite debilitated, but I've never been diagnosed with CFS, (I'm also in Ontario and I'm not sure where or how one would be diagnosed here. Certainly not from any of the docs I've seen). Since there are so many factors potentially causing CFS, couldn't B12 deficiency be one of them? I know that I've had my biggest improvements in almost 7 years utilizing some of the advice from both Rich Van K and Freddd re B12 (etc) supplementation and I would truly hate to lose the valuable input of others who have improved. If someone has been seriously, chronically ill, whether they've been labelled "CFS" or not, and has improved greatly, whether from B12 or say, valcyte, I'd like them to be able to share their stories. I think it's relevant.

 

[Undisclosed]

I wonder if we could hold off on this. I have many symptoms of CFS per the Canadian Concensus document, and am quite debilitated, but I've never been diagnosed with CFS, (I'm also in Ontario and I'm not sure where or how one would be diagnosed here. Certainly not from any of the docs I've seen). Since there are so many factors potentially causing CFS, couldn't B12 deficiency be one of them? I know that I've had my biggest improvements in almost 7 years utilizing some of the advice from both Rich Van K and Freddd re B12 (etc) supplementation and I would truly hate to lose the valuable input of others who have improved. If someone has been seriously, chronically ill, whether they've been labelled "CFS" or not, and has improved greatly, whether from B12 or say, valcyte, I'd like them to be able to share their stories. I think it's relevant.

Rockt -- there is a huge thread on the forum -- a sticky -- called "B-12-The hidden Story"

http://forums.phoenixrising.me/showthread.php?188-B-12-The-Hidden-Story&highlight=vitamin+B12

You might want to take a look at that.

Kina.

 

[Rockt]

Thanks Kina.

Yep, I know about the "...Hidden Story" thread and it's been very helpful. I just thought that if the people from Wrong Diagnosis were good enough to come here and contribute, I'd like to see this thread kept open for that. Again, CFS has many, many facets and anything that helps is useful and appreciated.

 

[Valentijn]

Again, CFS has many, many facets and anything that helps is useful and appreciated.

I think the problem is that we are an ME/CFS forum. There is useful stuff we can learn from other diseases, but only when they're presented in the context of ME/CFS. The problem with creating a space for people a simple B12 deficiency is that they aren't likely to talk about it in the appropriate context. Then we can end up with a lot of suggestions that aren't appropriate, such as exercising, with a lack of clarity as to whether this advice is intended for people with ME/CFS or not.

There's also a matter of logistics. If we allow a subforum for simple B12 deficiency, there's no good reason not to have a forum for simple POTS, simple sleep apnea, simple restless leg syndrome, etc. And if diseases other than ME/CFS are allowed to find a home here, then we have to figure out how to deal with them. It would be extra work for the moderators and administrators, without adding content that necessarily advances ME/CFS concerns.

People with simple B12 deficiency and other isolated aspects of ME/CFS have other forums that they can turn to, which specifically address their condition. If we want more information or discussion on those aspects of ME/CFS, we can go to other forums to find it, or we can discuss it here in the general context of ME/CFS. No one is being denied an opportunity to discuss or learn about their medical problems, it just makes more sense for this forum to remain focused on ME/CFS.

 

[Rosebud Dairy]

As a new member, seeing this thread, and other similar threads relating to the "OLD" thread at the WD website helped me to
1. find this forum to continue to seek help as a ME/CFS patient (that really doesn't even fit the typical ME/CFS symptom pattern)
2. continue to search for answers besides JUST B-12, as I distinctly recall that the spirit of the "OLD" thread was to figure out what ELSE might be wrong with us, work on in for a bit, and report back, in a clinical manner, as to what may have improved or not.

3. see the WHOLE pattern of my own ME/CFS as related to "another illness" or "simple B12 deficiency" -- for example --- I didn't get MTHFR checked until a few years after I had been on the WD thread, and even then had worked on thyroid, adrenals, diet, environmental exposure, and some other genetics. I really do NOT want to get in to my personal diagnoses, but I have to say that the "OLD" thread and mention of it here, helped me to get here and contribute here in small ways.

For so many of us, we are working on this sick thing WHILE brain fogged and sick, and having something as simple as a tag to an old thread very well could help save and improve one more life. And golly, you folks here are good at THAT!

I am really grateful to have found Phoenix, as my own fatigue is NOT just one thing, but I have had to chip away at it over the years with one small thing and then another. Every little thread, no matter how small, helps to make the whole fabric of the whole blanket of things that gets me better. I am RISING!

Gratefully yours, and hoping I have explained myself well in a moment of mental clarity,
RD

 

[Freddd]

I think the problem is that we are an ME/CFS forum. There is useful stuff we can learn from other diseases, but only when they're presented in the context of ME/CFS. The problem with creating a space for people a simple B12 deficiency is that they aren't likely to talk about it in the appropriate context. Then we can end up with a lot of suggestions that aren't appropriate, such as exercising, with a lack of clarity as to whether this advice is intended for people with ME/CFS or not.

There's also a matter of logistics. If we allow a subforum for simple B12 deficiency, there's no good reason not to have a forum for simple POTS, simple sleep apnea, simple restless leg syndrome, etc. And if diseases other than ME/CFS are allowed to find a home here, then we have to figure out how to deal with them. It would be extra work for the moderators and administrators, without adding content that necessarily advances ME/CFS concerns.


People with simple B12 deficiency and other isolated aspects of ME/CFS have other forums that they can turn to, which specifically address their condition. If we want more information or discussion on those aspects of ME/CFS, we can go to other forums to find it, or we can discuss it here in the general context of ME/CFS. No one is being denied an opportunity to discuss or learn about their medical problems, it just makes more sense for this forum to remain focused on ME/CFS.

If a person CAN"T be diagnosed with FMS without 11 of the 18 tender points then what are their other 60 symptoms? Developing FMS?

I think that CFS and FMS are limited subsets of mb12/adb12/methylfolate deficiencies. There are other involved cofactors that helps distinguish between the various forms. Focus on SYMPTOMS, not the many names assigned to any specific subsets of symptoms because most of those might be descriptively correct but wrong none the less. So IBS is a subset of FMS but it is also directly caused by methylfolate deficiency as well as mb12 deficiency.

I know there are a lot of hypothesis about what causes FMS/CFS but when it comes down to it the things that heal them are mb12/adb12/Metafolin plus cofactors. To exclude people because they have too many of the additional symptoms or are near the beginning of the illness and only have part of the symptoms is kind of ridiculous. If the central neurological symptoms of adb12 deficiency can be spotted 20 years before they cause Parkinson's they will be some of the symptoms of CFS/FMS but not all of them. And just maybe, Parkinson's could be prevented. The problem is the same for ALL of us. The doctors want to ignore the early symptoms as "non-specific" and wait until our lives are well on the way to being destroyed before considering the symptoms worth looking at and treating, if they knew how. After all these others generaly get the same name calling by docs, "Its all In Your head" and other such. They are accused of being liars and hypochondriacs and having imaginary diseases. How is this any different? Most can't be exactly diagnosed as anything becauue they cross one symptoms boundry or another. However, they all have methylation or mitochondria shutdown just as most diagnosed with CFS amd FMS. With a 400 symptoms universe and the wide range of possible combinations of 50-100 symptoms subsets one could qiite artificaially derive hundreds of syndrome names further obscuring the problem without helping solve it.

 

[Rockt]

I think that CFS and FMS are limited subsets of mb12/adb12/methylfolate deficiencies. There are other involved cofactors that helps distinguish between the various forms. Focus on SYMPTOMS, not the many names assigned to any specific subsets of symptoms becasue most of those might be descripttively correct but wring none the less. So IBS is a subset of FMS but it is also directly caused by methylfolate deficiency as well as mb12 deficiency.

I know there are a lot of hypothesis about what causes FMS/CFS but when it comes down to it the things that heal them are mb12/adb12/Metafolin plus cofactors. To exclude people becasue they have too many of the additional symtpoms or are near the beginning of the illness and only have part of the symptoms is kind of ridiculous. If the central neurological symptoms of adb12 deficiency can be spotted 20 years before they cause Parkinson's they will be some of the symptoms of CFS/FMS but not all of them. And just maybe, Parkinson's could be prevented. The problem is the same for ALL of us. The doctors want to ignore the early symptoms as "non-specific" and wait until our lives are well on the way to being destroyed before considering the symptoms worth looking at and treating, if they knew how. After all these others generaly get the same name calling by doics, "Its all In Your head" and other such. They are accused of being liars and hypochondriacs and having imaginary diseases. How is this any different. Most can't be exactly diagnosed as anything becasue they cross one symptoms boundry or another. However, they all have methylation or mitochondria shutdown just as most diagnosed with CFS amd FMS. With a 400 symptoms universe and the wide range of possible combinations of 50-100 symptoms subsets one could qiite artificaially derive hundreds of syndrone names further obscuring the problem without helping solve it.

AHMEN!!

Welcome back Freddd, we've missed you. REALLY missed you.

 

[richvank]

Hi, Freddd.

It really is good to see that you're back here on Phoenix Rising! I hope things are going relatively O.K. for you.
Welcome back!

Rich

 

[Freddd]

Hi, Freddd.

It really is good to see that you're back here on Phoenix Rising! I hope things are going relatively O.K. for you.
Welcome back!

Rich

Hi Rich,

I'm trying to just get back into the world again. The holidays are tough but I don't want to dive back down the hole. I have a bunch of new questions and so on. So tally ho ho ho.

 

[Idie]

Thank you Fredd....I'm so glad you are back. I sent you a private email, did you get it.?

I was hoping people would see the connection with chronic fatigue, ME, etc. Thanks for giving some perspective.

 

[Freddd]

Thank you Fredd....I'm so glad you are back. I sent you a private email, did you get it.?

I was hoping people would see the connection with chronic fatigue, ME, etc. Thanks for giving some perspective.

Hi Idie,

I did receive it and was going to get back to you after the holidays. I have an eye popper under preparation. It's not ready yet, but getting close.

 

[Idie]

Hi Idie,

I did receive it and was going to get back to you after the holidays. I have an eye popper under preparation. It's not ready yet, but getting close.

Great....I will be patiently waiting. I cannot tell you how much help you have given people with chronic fatigue and methylation problems.

By the way, I'm trying a new experiment. I had my pharmacist change my shots from 12 mg per mil to 25 mg per mil. I learned from Dr. who treats kids with autism that they had much better luck and the effects lasted longer when they changed the concentration from 12 mg per mil to 25 mg per mil. I have been doing this for about a month and have not noticed a real significance yet.

Idie

 

[Rosebud Dairy]

Concussion Boy is receiving Hyperbaric Oxygen Therapy (PLUS RICH/FREDDD basics) for his very persistent post concussive syndrome since he struck out on three different meds. (Concussion was on Aug 31) So, if mb12/Rich/FREDDD -old thread-new thread, etc.etc. can help those of us with all kinds of "wrong diagnoses" and the old thread helped all of us with all that, then certainly it can help someone genetically kin to one of those.

Oh, and yes...Patient named : Concussion Boy ALSO could get a diagnosis of idiopathic chronic fatigue in addition to, and possibly even before, his other problems.

 

[Freddd]

Great....I will be patiently waiting. I cannot tell you how much help you have given people with chronic fatigue and methylation problems.

By the way, I'm trying a new experiment. I had my pharmacist change my shots from 12 mg per mil to 25 mg per mil. I learned from Dr. who treats kids with autism that they had much better luck and the effects lasted longer when they changed the concentration from 12 mg per mil to 25 mg per mil. I have been doing this for about a month and have not noticed a real significance yet.

Idie

Hi Idie,

On a topic here on the methylation directory there is on the first page a b12 injection topic that you might want to read. I speak on the issue of concentration. I would think that the difference between 12 mg/ml and 25mg/ml is no more than a couple of hours at most for the 90% level of absorbtion, which with 20mg/ml is about 6 hours at 7.5mg injected and 8 hours for 10mg injected. If there were any significant difference you would know within a day or two.

 

[Freddd]

Concussion Boy is receiving Hyperbaric Oxygen Therapy (PLUS RICH/FREDDD basics) for his very persistent post concussive syndrome since he struck out on three different meds. (Concussion was on Aug 31) So, if mb12/Rich/FREDDD -old thread-new thread, etc.etc. can help those of us with all kinds of "wrong diagnoses" and the old thread helped all of us with all that, then certainly it can help someone genetically kin to one of those.

Oh, and yes...Patient named : Concussion Boy ALSO could get a diagnosis of idiopathic chronic fatigue in addition to, and possibly even before, his other problems.

Hi Rosebud Dairy,

The necessary factors for relieveing the body fatigue via mitochondria, if it is from the typical deficiencies, is adb12, Metafolin, l-carnitine fumarate, Alpha lipoic acid, D-Ribose tried in the order listed with adb12-Metafolin together. THis is assuming that one of the 5 star brand methylb12 is used already. If there is dificulty getting the cobalamins into the CNS/CSF as is the case according to research, for CFS/FMS then larger doses are not available. If mb12 or ADB12 injections are used then it must be protected from the light from the beginning of mixing to actual injection into the body. One minute of light in the syringe can destry it's effectivenss. What country are you in? Not all mb12 is creared equal. The worst of it is only somewhat better than hydroxycbl and doesn't significantly affect neurological things. The best of it is perhaps 100 to 1000 times more effective than the worst of the mb12.

A lack of the correct mb12/adb12 in the brain itself can cause a "fatigue", different from the fatigue of the body mitochondria malfunction. SAM-e can also help as can l-carnitine fumarate. Other carnitines might not have the same effect. TMG might also help body or brain.

 

[Little Bluestem]

Glutathione-Free Whey?

Would cheap 'denatured' whey be free of glutathione and a safe protein source?

 

[Freddd]

Would cheap 'denatured' whey be free of glutathione and a safe protein source?

Hi Little Bluestem,

I don't know. I'm only attempting to report accurately what I was told by the people doing the trial with various different precursors. The whey is a precursor, not containing glutathione but rather allows the body to make some.

 

[SoniaR]

Safety concerns of B12 supplementation

My 24 year old son has symptoms of Sub Acute combined degeneration of spinal cord since the past 1.5 years. However, repeated MRIs and nerve conduction study have been normal. He has been on B12 supplementation since the past 15 months - B12 (Methylcobalamin) injections - 500 mcg injection intra-muscular twice a week and sub-lingual Methylcobalamin lozanges (Jarrow). After 15 months he is about 50-60% better. He has also been taking some of the co-factors like omega 3, b-complex.

His primary symptoms are:

1. Loss pf proprioception in legs and arms - symptom intensifies on bending/ turning of back and neck
2. Constant unsteadiness/ dizziness - symptom intensifies on bending/ turning of back and neck
3. Weakness in arms and legs
4. Neck stiffness
5. General fatigue

Even though he feels much better with more frequent injections, the neurologist has refused to prescribe more than 500 mcg Methylcobalamin per week. We did blood counts a week back and some of the results were a bit worrying:

Red blood cell count 5.76 (Range 4.5 - 5.5)
Hemoglobin 16 (Range 13 - 17)
Hematocrit 47.9 (40-50)

Platelet count 150 (150-410) - His platelet count has always been on the lower side of normal

The Red blood count, Hemoglobin and Hematocrit have been slowly increasing. The red blood cell count is slightly out of range. On seeing this result the doctor has asked us to stop all B12 supplementation for 6 weeks. After that my son's symptoms have started increasing even though he is still taking 2-3, 5000 mcg sublinguals of Methyl B-12 (Jarrow) a day. I recently read Mayo Clinic's report on the safety of B12 and I quote:

"Use cautiously in patients with hematological concerns, as, according to case report data, treatment of vitamin B12 deficiency may lead to polycythemia vera, which is characterized by an increase in blood volume and the number of red blood cells".

I am really stressed out and worried as on one hand my son feels better with more B12 injections and on the other hand his RBC count and Hemoglobin/ Hematocrit are increasing. Please can someone advise what to do. Many thanks, Sonia

 

[Freddd]

My 24 year old son has symptoms of Sub Acute combined degeneration of spinal cord since the past 1.5 years. However, repeated MRIs and nerve conduction study have been normal. He has been on B12 supplementation since the past 15 months - B12 (Methylcobalamin) injections - 500 mcg injection intra-muscular twice a week and sub-lingual Methylcobalamin lozanges (Jarrow). After 15 months he is about 50-60% better. He has also been taking some of the co-factors like omega 3, b-complex.

His primary symptoms are:

1. Loss pf proprioception in legs and arms - symptom intensifies on bending/ turning of back and neck
2. Constant unsteadiness/ dizziness - symptom intensifies on bending/ turning of back and neck
3. Weakness in arms and legs
4. Neck stiffness
5. General fatigue

Even though he feels much better with more frequent injections, the neurologist has refused to prescribe more than 500 mcg Methylcobalamin per week. We did blood counts a week back and some of the results were a bit worrying:

Red blood cell count 5.76 (Range 4.5 - 5.5)
Hemoglobin 16 (Range 13 - 17)
Hematocrit 47.9 (40-50)

Platelet count 150 (150-410) - His platelet count has always been on the lower side of normal

The Red blood count, Hemoglobin and Hematocrit have been slowly increasing. The red blood cell count is slightly out of range. On seeing this result the doctor has asked us to stop all B12 supplementation for 6 weeks. After that my son's symptoms have started increasing even though he is still taking 2-3, 5000 mcg sublinguals of Methyl B-12 (Jarrow) a day. I recently read Mayo Clinic's report on the safety of B12 and I quote:

"Use cautiously in patients with hematological concerns, as, according to case report data, treatment of vitamin B12 deficiency may lead to polycythemia vera, which is characterized by an increase in blood volume and the number of red blood cells".

I am really stressed out and worried as on one hand my son feels better with more B12 injections and on the other hand his RBC count and Hemoglobin/ Hematocrit are increasing. Please can someone advise what to do. Many thanks, Sonia

Hi Sonia,

I answered at your other post becasue I saw that one first.