Re: FFC / Fibromyalgia & Fatigue Centers (long)

[Guest guest]

Here's my 2 cents' worth about the Fibromyalgia & Fatigue Centers (FFC)… well,

okay, it's more like 2 dollars' worth:

I read Dr Teitlebaum's book " From Fatigued to Fantastic! " about 7 years ago, I

think, after I'd already been ill for some time. It seemed to me to have a lot

of common-sense ideas in it for people who were struggling with " chronic

fatigue " , but not as applicable for people who had " chronic fatigue syndrome " . I

was deeply suspicious of any claim that someone with the illness I was living

with could go " from fatigued to fantastic! " if they just followed the advice in

the book, since I was not aware of any treatment that consistently helped people

who had the same illness as I did. I figured if something really worked, news

would be spreading like wildfire. And I hadn't heard from anyone who was now

recovered and feeling fantastic.

About 6 years ago, I found the Denver FFC through web searches, looking for some

clue as to how to treat this illness. I went to the presentation, I signed up to

be seen by one of their doctors. I wasn't certain that they would be able to

help, but I was willing to have an open mind and give it a try, as none of the

GP's or endocrinologists I'd seen so far had been able to help me. IIRC, the

doctor I saw was named Deborah Sainer. The first round of suggested treatment

was all supportive, using supplements that were similar to what was outlined in

Dr T's book. Didn't do a darned thing for me. Then came some Rx's for hormones,

and an Rx for Adderall. The hormone replacements *maybe* helped a bit? but it

was hard to tell. The Adderall (sim. to Ritalin) made me feel so wired and weird

that I only took that for a couple of days. After that round, she ordered a slew

of blood tests for pathogens. She said that in her experience, about 2/3rds of

the patients she saw were helped by the supplement regimen, and the remaining

1/3 usually had some sort of infectious thing going on. My tests came back

positive for EBV, cytomegalovirus, mycoplasma pneumonia, and two other things I

don't recall at the moment. That's when the lightbulb went off in my own head:

whatever this illness was, it involved a disordered immune system. It wasn't due

to any *one* pathogen, it was due to the immune system not successfully fighting

off multiple pathogens, some of which were common in other people but in their

bodies held under control. Dr Sainer started me on an antibiotic (Zithromax)

targeted at one of those pathogens. [i started it on the first day of a

cross-country car trip. Big mistake. I'd read about die-off reactions, and I'd

been warned this might happen, but POW! It was like a really bad case of the

flu. I ran a fever, I ached badly all over, and felt every bump in the road for

those 2,000 miles.]

Since I had then moved to a different part of the country, I looked up the

Boston-area FFC in hopes that they'd be able to pick up where I'd left off with

their Denver clinic. No such luck. The doctor I saw at the Boston-area FFC

started all over again, with a whole new set of blood tests, a whole new intake

interview. She lectured me on basic sleep habits. (Really?!? if it were that

easy, I wouldn't be there in the first place.) She had never heard of Dr Cheney

or some of the other specialists that were working in the area of ME/CFS. She

hadn't even bothered to read the files that were forwarded to her from the

Denver FFC office, and was generally dismissive and disrespectful. I declined to

have a second visit with her. I heard later that several other people had had

bad experiences with her, and sometime after that I found out that she had been

replaced by a different doctor.

I won't go into my medical odyssey after that, except to say that I eventually

became a patient of Dr Klimas in Miami, Florida, and know that she gets

it. Whatever this illness is, she understands it as well as it is currently

understood, and I have a great deal of confidence in her.

As far as my experiences with the FFC go, I was not particularly pleased with

their overbearing marketing, or the fact that in addition to the high

consultation fees, the first round of their program consisted of armloads of

expensive FFC-branded supplements. At the time, I paid per visit. Since then

I've heard that they've changed to a different payment structure where you sign

up for a whole course of treatment up front ( " that encourages you to see

treatment through to sustainable improvement " ). I think a high rate of return on

investment is an big part of their business model. I'm all for businesses making

enough profit to stay in business, but this seems kind of pushing the edge

between fair return and money for money's sake. My opinion only, but that's my

impression.

Now, as for the care I received. I think, from my own experience, and from what

I've read of other's experiences, it depends a great deal on which particular

doctor you happen to see. I think Dr Sainer was reasonably experienced and

competent, as a doctor. I am grateful to her for ordering the blood tests for

pathogens, because that was a big ahah! moment for me, and valuable information.

I think she saw a lot of " fatigued " patients. I don't think she, at that time,

had much specific insight into ME/CFS as opposed to more general fatigue.

I think Dr T. has made contributions into what supplements will help people who

are fatigued from other causes. I don't think Dr T. has any particular insight

into ME/CFS vs generalized fatigue, otherwise I would be hearing more about him

in the circles of doctors and researchers that are working on ME/CFS in

particular. Or I would be hearing him talk more about neuroimmune issues.

If you have no other leads for doctors that specialize in ME/CFS, and you don't

mind spending buckets of money, and you go into it with your eyes open knowing

that you might get a good doctor who understands this illness or you might not,

then trying your nearest FFC might be an okay idea. However, you could also

waste a couple of years going down blind alleys. If you're going to spend a lot

of money anyway, I'd strongly recommend looking up one of the doctors that's a

genuine expert on ME/CFS instead, and going to them, even if it means you have

to travel to some other part of the country to do it.

Oh, and one other thing. If you are not sure whether your illness is general

fatigue, or " chronic fatigue syndrome " (also known these days as ME, or Myalgic

Encephalomyelitis), you should check out the recently proposed international

consensus criteria. Here's a link:

http://www.research1st.com/2011/07/25/me-case-definition/

I'll get down off my soapbox now.

Best wishes,

Marcia on

in Salem, Massachusetts

[Guest guest]

Marcia writes:

> If you are not sure whether your illness is general fatigue,

> or " chronic fatigue syndrome " (also known these days as ME,

> or Myalgic Encephalomyelitis), you should check out the

> recently proposed international consensus criteria.

> Here's a link:

> http://www.research1st.com/2011/07/25/me-case-definition/

This IS an interesting list of criteria.

The problem I have with it is that many of the line items

could have other causes.

Carol W.

willis_protocols

[Guest guest]

Both you and Kathleen have contributed very good details of the FFC

experience-------many of my own.

What has improved while under the care of Dr. Klimas?

God Bless,

Sara

>

> Here's my 2 cents' worth about the Fibromyalgia & Fatigue Centers (FFC)… well,

okay, it's more like 2 dollars' worth:

>

> I read Dr Teitlebaum's book " From Fatigued to Fantastic! " about 7 years ago, I

think, after I'd already been ill for some time. It seemed to me to have a lot

of common-sense ideas in it for people who were struggling with " chronic

fatigue " , but not as applicable for people who had " chronic fatigue syndrome " . I

was deeply suspicious of any claim that someone with the illness I was living

with could go " from fatigued to fantastic! " if they just followed the advice in

the book, since I was not aware of any treatment that consistently helped people

who had the same illness as I did. I figured if something really worked, news

would be spreading like wildfire. And I hadn't heard from anyone who was now

recovered and feeling fantastic.

>

> About 6 years ago, I found the Denver FFC through web searches, looking for

some clue as to how to treat this illness. I went to the presentation, I signed

up to be seen by one of their doctors. I wasn't certain that they would be able

to help, but I was willing to have an open mind and give it a try, as none of

the GP's or endocrinologists I'd seen so far had been able to help me. IIRC, the

doctor I saw was named Deborah Sainer. The first round of suggested treatment

was all supportive, using supplements that were similar to what was outlined in

Dr T's book. Didn't do a darned thing for me. Then came some Rx's for hormones,

and an Rx for Adderall. The hormone replacements *maybe* helped a bit? but it

was hard to tell. The Adderall (sim. to Ritalin) made me feel so wired and weird

that I only took that for a couple of days. After that round, she ordered a slew

of blood tests for pathogens. She said that in her experience, about 2/3rds of

the patients she saw were helped by the supplement regimen, and the remaining

1/3 usually had some sort of infectious thing going on. My tests came back

positive for EBV, cytomegalovirus, mycoplasma pneumonia, and two other things I

don't recall at the moment. That's when the lightbulb went off in my own head:

whatever this illness was, it involved a disordered immune system. It wasn't due

to any *one* pathogen, it was due to the immune system not successfully fighting

off multiple pathogens, some of which were common in other people but in their

bodies held under control. Dr Sainer started me on an antibiotic (Zithromax)

targeted at one of those pathogens. [i started it on the first day of a

cross-country car trip. Big mistake. I'd read about die-off reactions, and I'd

been warned this might happen, but POW! It was like a really bad case of the

flu. I ran a fever, I ached badly all over, and felt every bump in the road for

those 2,000 miles.]

>

> Since I had then moved to a different part of the country, I looked up the

Boston-area FFC in hopes that they'd be able to pick up where I'd left off with

their Denver clinic. No such luck. The doctor I saw at the Boston-area FFC

started all over again, with a whole new set of blood tests, a whole new intake

interview. She lectured me on basic sleep habits. (Really?!? if it were that

easy, I wouldn't be there in the first place.) She had never heard of Dr Cheney

or some of the other specialists that were working in the area of ME/CFS. She

hadn't even bothered to read the files that were forwarded to her from the

Denver FFC office, and was generally dismissive and disrespectful. I declined to

have a second visit with her. I heard later that several other people had had

bad experiences with her, and sometime after that I found out that she had been

replaced by a different doctor.

>

> I won't go into my medical odyssey after that, except to say that I eventually

became a patient of Dr Klimas in Miami, Florida, and know that she gets

it. Whatever this illness is, she understands it as well as it is currently

understood, and I have a great deal of confidence in her.

>

> As far as my experiences with the FFC go, I was not particularly pleased with

their overbearing marketing, or the fact that in addition to the high

consultation fees, the first round of their program consisted of armloads of

expensive FFC-branded supplements. At the time, I paid per visit. Since then

I've heard that they've changed to a different payment structure where you sign

up for a whole course of treatment up front ( " that encourages you to see

treatment through to sustainable improvement " ). I think a high rate of return on

investment is an big part of their business model. I'm all for businesses making

enough profit to stay in business, but this seems kind of pushing the edge

between fair return and money for money's sake. My opinion only, but that's my

impression.

>

> Now, as for the care I received. I think, from my own experience, and from

what I've read of other's experiences, it depends a great deal on which

particular doctor you happen to see. I think Dr Sainer was reasonably

experienced and competent, as a doctor. I am grateful to her for ordering the

blood tests for pathogens, because that was a big ahah! moment for me, and

valuable information. I think she saw a lot of " fatigued " patients. I don't

think she, at that time, had much specific insight into ME/CFS as opposed to

more general fatigue.

>

> I think Dr T. has made contributions into what supplements will help people

who are fatigued from other causes. I don't think Dr T. has any particular

insight into ME/CFS vs generalized fatigue, otherwise I would be hearing more

about him in the circles of doctors and researchers that are working on ME/CFS

in particular. Or I would be hearing him talk more about neuroimmune issues.

>

> If you have no other leads for doctors that specialize in ME/CFS, and you

don't mind spending buckets of money, and you go into it with your eyes open

knowing that you might get a good doctor who understands this illness or you

might not, then trying your nearest FFC might be an okay idea. However, you

could also waste a couple of years going down blind alleys. If you're going to

spend a lot of money anyway, I'd strongly recommend looking up one of the

doctors that's a genuine expert on ME/CFS instead, and going to them, even if it

means you have to travel to some other part of the country to do it.

>

> Oh, and one other thing. If you are not sure whether your illness is general

fatigue, or " chronic fatigue syndrome " (also known these days as ME, or Myalgic

Encephalomyelitis), you should check out the recently proposed international

consensus criteria. Here's a link:

http://www.research1st.com/2011/07/25/me-case-definition/

>

> I'll get down off my soapbox now.

>

> Best wishes,

>

> Marcia on

> in Salem, Massachusetts

>

>

[Guest guest]

Dear Carol,

Yes, of course they may have other causes. The thing about a " syndrome " is that,

even though the cause is not known, certain clusters of symptoms occur together.

It's that pattern of particular symptoms that is characteristic of the syndrome

in question, and usually not any one symptom by itself.

This proposed new criteria includes many items from older attempts at criteria

for ME/CFS. The changes (as I recall) are that it puts more emphasis on the

neuroimmune aspects, and puts post-exertional malaise front and center as one of

the required symptoms.

Until the underlying cause(s) are teased out by research, any criteria will be

an educated guess. But I think this latest attempt comes pretty close.

Also keep in mind that many people, myself included, suspect that ME/CFS is a

collection of related conditions or illnesses, which further muddies the water.

I think more progress will occur when we're better at distinguishing the

different subgroups, which will no doubt have somewhat different sets of

symptoms.

Marcia on

in Salem, Massachusetts

Hm. I seem to have a bit of a brain today, I'd better go knock off a few of the

things on my " to do " list!

On Feb 14, 2012, at 5:08 AM, cbwillis9 wrote:

>

>

> Marcia writes:

> > If you are not sure whether your illness is general fatigue,

> > or " chronic fatigue syndrome " (also known these days as ME,

> > or Myalgic Encephalomyelitis), you should check out the

> > recently proposed international consensus criteria.

> > Here's a link:

> > http://www.research1st.com/2011/07/25/me-case-definition/

>

> This IS an interesting list of criteria.

>

> The problem I have with it is that many of the line items

> could have other causes.

>

> Carol W.

> willis_protocols

>

>

[Guest guest]

Dear Sara,

First and foremost, at Dr Klimas's clinic in Miami her entire staff understands

the illness, understands that you have a real illness, and does their best to

make you comfortable. Just being *believed* is a huge thing. The waiting room is

furnished with recliners, so you can sort of lie down, and you can request a

blanket if you feel chilly.

My first round of blood tests through Dr Klimas showed my immune markers were

way off, some sky high and some very low. She started me on an immune modulator

called Imunovir, which is an Rx available only through Canada. She's having me

take it 3 months on, 3 months off. After the first round, she ordered another

set of blood tests, and said the immune markers were starting to normalize,

although some of them weren't all the way back into normal ranges yet.

She also encouraged me to exercise. Ah, I saw everyone's eyebrows just shoot up!

But she had me work with a physiologist to determine my personal energy

envelope, and I learned about how to pace myself so as not to crash afterwards.

One thing is to start with very small periods of exertion--in my case, 3 minutes

work, 3 minutes rest, repeat for a total of 3 rounds altogether. Also the

physiologist showed me how to monitor my heart rate, again to stay within my

personal envelope. Unfortunately my brain fog is severe enough most of the time

that doing such exact timing and heart rate monitoring is an obstacle; currently

I just take the general idea and exercise gently until my body tells me it's

time to stop, and that seems to be working okay for me. It's hard to do it

regularly, and I keep falling off the wagon, but I know that it's an important

part of the plan so I keep trying.

One of the characteristics of ME/CFS is that people tend to have low blood

volume, " down a quart " as some joke. Dr Klimas recommended I drink something

like a sports drink regularly. That's been helpful, and I can tell my body needs

it, because I crave it and feel better if I've got some around to sip on during

the day. (I use VitaLyte, which is an electrolyte solution that has less sugar

than most other sports drinks.) She also Rx'd Florinef, which helps retain

fluids in the body, to help with low blood volume, which is something many

people with ME/CFS have, but it gave me serious headaches, so I discontinued

that.

She was willing to continue my Rx's for Low-Dose Naltrexone (LDN) and vitamin

B-12 shots. My local family practitioner was not willing to Rx such large

amounts of B-12, and I didn't even bother trying to explain LDN to my GP.

Neither of those things give me spectacular results, but are helpful for me as

low-level supports. Dr Klimas has at least heard of them and didn't mind Rx'ing

them if they helped me. I appreciate that.

As to what has improved… Well, the immune markers on my blood tests have

improved. I think my physical stamina has increased somewhat. I don't have as

many completely bashed days as I used to. Brain fog has been my most limiting

symptom, and that's still a problem. I've been very ill for a very long time,

and it wouldn't surprise me if it takes awhile to climb back up out of the hole.

What has improved most is my confidence that my doctor understands the illness

(as well as anyone does, these days), will continue to study and research it,

and will continue to work with me while respecting me as a person and as a

patient. And that's really important to me.

Whoops! Brain is fading…

I'll try to post future updates, and certainly if anything changes.

Best wishes,

Marcia on

in Salem, Massachusetts

On Feb 14, 2012, at 8:12 AM, grammie2304 wrote:

> Both you and Kathleen have contributed very good details of the FFC

experience-------many of my own.

>

> What has improved while under the care of Dr. Klimas?

>

> God Bless,

> Sara

>

> -

[Guest guest]

Hi Marcia,

May I ask what is the dose and kind of B-12 shots you take; how frequently, too?

Dose of naltrexone, too?

TIA,

Gail

>

> > Both you and Kathleen have contributed very good details of the FFC

experience-------many of my own.

> >

> > What has improved while under the care of Dr. Klimas?

> >

> > God Bless,

> > Sara

> >

> > -

>

>

>

[Guest guest]

Dear Gail,

LDN in liquid preparation, from Skip's Pharmacy. Label says " 3mg/ml, take 1ml by

mouth at bedtime " . So I guess that works out to 3mg per day. When I take it, I

feel less fidgety and more calm.

Vit B12 is hydroxocobalamin (which is one of 3 diff types of B12). Label says,

" 25mg/ml, inject 5ml " . I inject myself subcutaneously 2-3 times per week. The

disposable insulin syringes I'm currently using are marked up to 3/10 cc's (and

30 units, the equiv I guess). 1 cc = 1ml. Anybody with a function brain and some

math skills to work out the amount of B12 I get with each shot? Alas, I'm fried

today.

Hope this helps,

Marcia on

in Salem, Massachusetts

On Feb 14, 2012, at 12:30 PM, wanda85929 wrote:

>

> Hi Marcia,

>

> May I ask what is the dose and kind of B-12 shots you take; how frequently,

too? Dose of naltrexone, too?

>

> TIA,

>

> Gail

>

[Guest guest]

I " think " 1ml = 1,000 mcg B=12. So if that is correct, you would be taking

5,000 mcg when injecting 5 ml. Again, I think. <chuckle> But you said both the

naltrexone and B-12 help only minimially? Bummer

Gail

>

> >

> > Hi Marcia,

> >

> > May I ask what is the dose and kind of B-12 shots you take; how frequently,

too? Dose of naltrexone, too?

> >

> > TIA,

> >

> > Gail

> >

>

>

>

>

[Guest guest]

Yeah, they help enough to keep taking them, but only as a mild support, not as a

" wow! I feel great! " sort of thing.

M.

On Feb 16, 2012, at 5:39 PM, wanda85929 wrote:

> I " think " 1ml = 1,000 mcg B=12. So if that is correct, you would be taking

5,000 mcg when injecting 5 ml. Again, I think. <chuckle> But you said both the

naltrexone and B-12 help only minimially? Bummer

>

> Gail

>

>

> >

> > >

> > > Hi Marcia,

> > >

> > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > >

> > > TIA,

> > >

> > > Gail

> > >

> >

> >

> >

> >

[Guest guest]

Can anyone tell me the difference between hydroxo-----B12, and cyanoc---B12?

My doctor prescribes the later.

God Bless,

Sara

> > >

> > > >

> > > > Hi Marcia,

> > > >

> > > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > > >

> > > > TIA,

> > > >

> > > > Gail

> > > >

> > >

> > >

> > >

> > >

[Guest guest]

Hi, Sara.

The difference is that the first one has a hydroxo group attached to it, and the

second has a cyano group, basically cyanide.

Normally, the cells can convert either of these to the two coenzyme forms of B12

that they need, namely methylcobalamin and adenosylcobalamin.

The reason these initial forms are used as supplements is that they are more

chemically stable and have a long shelf life.

So long as a person has normal intracellular B12 processing enzymes, either is

O.K. at typical RDA dosages, which are a few micrograms per day.

However, in ME/CFS, it has been found (initially by Drs. Cheney and Lapp, a few

years ago, and more recently as we have adapted the methylation type treatments

used in autism to the treatment of ME/CFS) that the B12 dosage needs to be about

2 milligrams or higher, taken either sublingually or by injection. At these

higher dosages, there would be a lot more cyanide for the body to deal with if

cyanocobalamin were used.

Most people can probably still handle that, but I know of one case in which the

four detox pathways for cyanide were all depleted, and the person began to

suffer from cyanide poisoning and was headed down. His physician consulted with

me, and I recommended stopping the cyanocobalamin and continuing with

hydroxocobalamin as well as giving oxygen by mask. This pulled him back up.

Hydroxocobalamin at high dosage is the standard rescue for cyanide poisoning,

and the oxygen helps to displace the cyanide molecules from the molecular sites

where oxygen is supposed to bind.

Since hydroxocobalamin is now readily available, my view is that it is better to

use it than cyanocobalamin, especially at the higher dosages we need to use in

ME/CFS because of the functional B12 deficiency in this disorder.

Best regards,

Rich

> > > >

> > > > >

> > > > > Hi Marcia,

> > > > >

> > > > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > > > >

> > > > > TIA,

> > > > >

> > > > > Gail

> > > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

Rich, I've just ordered from dr myhill her transdermal mineral spray which

includes b12 and which apparently is the cyano form. It works put at 5000mcg.

Could this be too high? You rub it on your skin

Many thanks

bel

Sent from my iPhone

On 17 Feb 2012, at 21:03, " rvankonynen " <richvank@...> wrote:

> Hi, Sara.

>

> The difference is that the first one has a hydroxo group attached to it, and

the second has a cyano group, basically cyanide.

>

> Normally, the cells can convert either of these to the two coenzyme forms of

B12 that they need, namely methylcobalamin and adenosylcobalamin.

>

> The reason these initial forms are used as supplements is that they are more

chemically stable and have a long shelf life.

>

> So long as a person has normal intracellular B12 processing enzymes, either is

O.K. at typical RDA dosages, which are a few micrograms per day.

>

> However, in ME/CFS, it has been found (initially by Drs. Cheney and Lapp, a

few years ago, and more recently as we have adapted the methylation type

treatments used in autism to the treatment of ME/CFS) that the B12 dosage needs

to be about 2 milligrams or higher, taken either sublingually or by injection.

At these higher dosages, there would be a lot more cyanide for the body to deal

with if cyanocobalamin were used.

>

> Most people can probably still handle that, but I know of one case in which

the four detox pathways for cyanide were all depleted, and the person began to

suffer from cyanide poisoning and was headed down. His physician consulted with

me, and I recommended stopping the cyanocobalamin and continuing with

hydroxocobalamin as well as giving oxygen by mask. This pulled him back up.

Hydroxocobalamin at high dosage is the standard rescue for cyanide poisoning,

and the oxygen helps to displace the cyanide molecules from the molecular sites

where oxygen is supposed to bind.

>

> Since hydroxocobalamin is now readily available, my view is that it is better

to use it than cyanocobalamin, especially at the higher dosages we need to use

in ME/CFS because of the functional B12 deficiency in this disorder.

>

> Best regards,

>

> Rich

>

>

> > > > >

> > > > > >

> > > > > > Hi Marcia,

> > > > > >

> > > > > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > > > > >

> > > > > > TIA,

> > > > > >

> > > > > > Gail

> > > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Hello

At Rich's suggestion I started injecting cyano b12 and later swithed to Hydroxo

For about the first six month I got very sleepy after the Hydroxo (a herx)

No it just helps with energy

I think continuous use of b12 has helped me with CFS

Steve

On Feb 17, 2012, at 4:21 PM, bel wrote:

> Rich, I've just ordered from dr myhill her transdermal mineral spray which

includes b12 and which apparently is the cyano form. It works put at 5000mcg.

Could this be too high? You rub it on your skin

>

> Many thanks

> bel

>

> Sent from my iPhone

>

> On 17 Feb 2012, at 21:03, " rvankonynen " <richvank@...> wrote:

>

> > Hi, Sara.

> >

> > The difference is that the first one has a hydroxo group attached to it, and

the second has a cyano group, basically cyanide.

> >

> > Normally, the cells can convert either of these to the two coenzyme forms of

B12 that they need, namely methylcobalamin and adenosylcobalamin.

> >

> > The reason these initial forms are used as supplements is that they are more

chemically stable and have a long shelf life.

> >

> > So long as a person has normal intracellular B12 processing enzymes, either

is O.K. at typical RDA dosages, which are a few micrograms per day.

> >

> > However, in ME/CFS, it has been found (initially by Drs. Cheney and Lapp, a

few years ago, and more recently as we have adapted the methylation type

treatments used in autism to the treatment of ME/CFS) that the B12 dosage needs

to be about 2 milligrams or higher, taken either sublingually or by injection.

At these higher dosages, there would be a lot more cyanide for the body to deal

with if cyanocobalamin were used.

> >

> > Most people can probably still handle that, but I know of one case in which

the four detox pathways for cyanide were all depleted, and the person began to

suffer from cyanide poisoning and was headed down. His physician consulted with

me, and I recommended stopping the cyanocobalamin and continuing with

hydroxocobalamin as well as giving oxygen by mask. This pulled him back up.

Hydroxocobalamin at high dosage is the standard rescue for cyanide poisoning,

and the oxygen helps to displace the cyanide molecules from the molecular sites

where oxygen is supposed to bind.

> >

> > Since hydroxocobalamin is now readily available, my view is that it is

better to use it than cyanocobalamin, especially at the higher dosages we need

to use in ME/CFS because of the functional B12 deficiency in this disorder.

> >

> > Best regards,

> >

> > Rich

> >

> >

> > > > > >

> > > > > > >

> > > > > > > Hi Marcia,

> > > > > > >

> > > > > > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > > > > > >

> > > > > > > TIA,

> > > > > > >

> > > > > > > Gail

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

Hi, bel.

Well, I guess it wouldn't be my favorite, though it may be O.K. for most people.

The body has four pathways for disposing of cyanide: reacting with thiosulfate,

hydroxocobalamin, pyruvate, or alpha ketoglutarate. I've encountered one person

who was depleted in all four. I don't know how common that would be.

Best regards,

Rich

> > > > > >

> > > > > > >

> > > > > > > Hi Marcia,

> > > > > > >

> > > > > > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > > > > > >

> > > > > > > TIA,

> > > > > > >

> > > > > > > Gail

> > > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

[Guest guest]

On Fri, 17 Feb 2012 21:03:14 -0000, " rvankonynen "

<richvank@...> wrote:

>Since hydroxocobalamin is now readily available, my view is that

>it is better to use it than cyanocobalamin, especially at the higher

>dosages we need to use in ME/CFS because of the functional B12

>deficiency in this disorder.

Can you tell me where I can get high dose hydroxocobalamin in the

sublingual form? Thank you in advance for all replies.

[Guest guest]

Thanks Rich. Are there any specific symptoms I should look out for if my bod was

not disposing of the cyanide well? Hopefully it will be ok as I do want to use

the mineral spray for all the other goodies in there

Sent from my iPhone

On 18 Feb 2012, at 06:41, " rvankonynen " <richvank@...> wrote:

> Hi, bel.

>

> Well, I guess it wouldn't be my favorite, though it may be O.K. for most

people. The body has four pathways for disposing of cyanide: reacting with

thiosulfate, hydroxocobalamin, pyruvate, or alpha ketoglutarate. I've

encountered one person who was depleted in all four. I don't know how common

that would be.

>

> Best regards,

>

> Rich

>

>

> > > > > > >

> > > > > > > >

> > > > > > > > Hi Marcia,

> > > > > > > >

> > > > > > > > May I ask what is the dose and kind of B-12 shots you take; how

frequently, too? Dose of naltrexone, too?

> > > > > > > >

> > > > > > > > TIA,

> > > > > > > >

> > > > > > > > Gail

> > > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

> > > > > > >

[Guest guest]

Hi, .

In the current version of the simplified protocol, I have suggested using

HydroxoB12 Megadrops, available from www.holisticheal.com

In the earlier version, I suggested the Perque hydroxocobalamin lozenges,

available either from that source or others.

There may be others.

Best regards,

Rich

>

> >Since hydroxocobalamin is now readily available, my view is that

> >it is better to use it than cyanocobalamin, especially at the higher

> >dosages we need to use in ME/CFS because of the functional B12

> >deficiency in this disorder.

>

> Can you tell me where I can get high dose hydroxocobalamin in the

> sublingual form? Thank you in advance for all replies.

>

[Guest guest]

Hi, bel.

Here's a quotation from an email I wrote to the other patient I mentioned, over

three years ago:

" As I wrote in my previous email, some of the symptoms of cyanide toxicity are

dizziness, weakness, congestion of the lungs, hoarseness, conjunctivitis, loss

of appetite, weight loss, and mental deterioration. You reported becoming

bedridden, losing weight, and having greatly increased brain fog. I think these

appear to be similar.

" The biochemical mechanism by which cyanide causes toxicity in the body is that

it blocks the enzyme cytochrome oxidase. This enzyme is located in the

respiratory chain of the mitochondria in all the cells, and it is responsible

for reacting oxygen molecules with electrons and hydrogen ions to form water

molecules, as the terminal electron acceptor in the oxidative metabolism. When

some molecules of this enzyme become blocked, the energy production of the

mitochondria in all the cells is lowered, and oxidative stress develops from the

induced hypoxia. The cells of organs that depend most on oxidative metabolism

are affected the most. These organs include the brain, the skeletal muscles,

the liver and the heart. I believe that the effects of cyanide toxicity

primarily on those organs produced the symptoms you experienced. The elevated

liver enzymes could also have been caused by cyanide toxicity. Effects on the

mitochondria of the parietal cells in the stomach may have lowered the

production of stomach acid. "

I hope this helps.

Rich

> > > > > > > >

> > > > > > > > >

> > > > > > > > > Hi Marcia,

> > > > > > > > >

> > > > > > > > > May I ask what is the dose and kind of B-12 shots you take;

how frequently, too? Dose of naltrexone, too?

> > > > > > > > >

> > > > > > > > > TIA,

> > > > > > > > >

> > > > > > > > > Gail

> > > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

> > > > > > > >

[Guest guest]

Short course.There are three types of B12

Cynocobalamine is the cheapest, must be converted by the body to

hydroycobalamine for the body to use and to methylcobalamine for the brain to

use.

Cynocobalamine has a trace of cyanide and is best avoided.

Hydroxycobalamine is safest Thats what   I take.

Some people need methylcobalamine

http://en.wikipedia.org/wiki/Vitamin_B12