Re: Are B vitamins OK with Lyme?

[Guest guest]

There's another argument that says that stuff like B vits and

magnesium -- both of which make us feel MUCH better -- encourage Lyme

to move back out from the cyst phase into spirochete form. Once

they're spirochetes, the abx can kill them much more effectively. This

would seem to be a good thing.

My LLMD told me to keep up with both the magnesium and the Bs,

especially B6 and B12. As noted, I also take a lot of niacinamide,

which is also a B vitamin. So I doubt there's a strong consensus on

this.

Sara

On Oct 27, 2008, at 5:17 AM, wrote:

> My LLMD has advised me to stop taking multivitamins because he

> believes

> the spirochetes thrive from the B vitamins. Given the support my

> immune system needs now, I'm questioning this advice and was wondering

> if anyone has heard this or knows of any research about this.

>

> Thanks!

> -

[Guest guest]

Very interesting, ! My LLMD actually gave me B12 injections to give

myself.

Kenda

> My LLMD has advised me to stop taking multivitamins because he believes

> the spirochetes thrive from the B vitamins. Given the support my

> immune system needs now, I'm questioning this advice and was wondering

> if anyone has heard this or knows of any research about this.

>

> Thanks!

> -

>

[Guest guest]

Kendra, After my last post I did more research and found lots of the LLMDs

recommend B12! I guess I should have asked more about why my LLMD disagrees

with the B vitamins.

-

[Guest guest]

Hi, ,

I'd love to know what your LLMD says. To me, it only makes sense that we

keep our bodies strong so we can fight the tick diseases we have.

Kenda

> Kendra, After my last post I did more research and found lots of the LLMDs

> recommend B12! I guess I should have asked more about why my LLMD disagrees

> with the B vitamins.

> -

>

>

[Guest guest]

Does he/she also want you to stop eating fruits and veggies so you do not

want to feed the spirochetes as well? :-)

The way I look at it, you give your body everything that it needs to get

healthy so your body can better fight the spirochetes.

On Mon, Oct 27, 2008 at 8:17 AM, <maryha@...> wrote:

> My LLMD has advised me to stop taking multivitamins because he believes

> the spirochetes thrive from the B vitamins. Given the support my

> immune system needs now, I'm questioning this advice and was wondering

> if anyone has heard this or knows of any research about this.

>

> Thanks!

> -

>

>

[Guest guest]

That's what I thought too! He does recommend eating a well balanced diet so he

did not suggest cutting out all B vitamins. During my long wait to see this

LLMD and as my symptoms became increasingly neurologic, I had also made an app't

with a Lyme neurologist who I just saw. He does not believe what the other LLMD

recommended regarding stopping intake of B vitamins and said I needed extra too.

He is running more tests then I will meet with him to go over results and I'm

sure he will recommend a different course of treatment. The first LLMD has just

put me on 1500 mg tetracycline. I guess I'll have to make a decision between

these two LLMDs. The Lyme neurologist is a much further drive and doesn't take

insurance but so far I'm more encouraged by his approach.

-

[Guest guest]

Yes, not ALl LLMD's are really LLMD's, or at least not good ones. But

that is the same in any business.

I took high dosages of vitamin B on a recommendation and after a couple

months of pain during urinating I ended up with prostatitis. So I

stopped it and too Amoxycillan for 14 days and it went away, but was

very painful for awhile. I have NOT taken vitamin B since except what

I get in my foods. I do take A LOT of vitamin C though and also

Vitamin E and also vitamin A. They help a little. But herbs helped

the most.

Jim.

###

>

> That's what I thought too! He does recommend eating a well balanced

diet so he did not suggest cutting out all B vitamins. During my long

wait to see this LLMD and as my symptoms became increasingly

neurologic, I had also made an app't with a Lyme neurologist who I just

saw. He does not believe what the other LLMD recommended regarding

stopping intake of B vitamins and said I needed extra too. He is

running more tests then I will meet with him to go over results and I'm

sure he will recommend a different course of treatment. The first LLMD

has just put me on 1500 mg tetracycline. I guess I'll have to make a

decision between these two LLMDs. The Lyme neurologist is a much

further drive and doesn't take insurance but so far I'm more encouraged

by his approach.

>

> -

>

>

[Guest guest]

any amount of vitamin B is really bad for women with Interstitial

Cystitis, it will definitely make you flare up. Could be the same for

prostatitis...

cathleen

Jim wrote:

>

> Yes, not ALl LLMD's are really LLMD's, or at least not good ones. But

> that is the same in any business.

>

> I took high dosages of vitamin B on a recommendation and after a couple

> months of pain during urinating I ended up with prostatitis. So I

> stopped it and too Amoxycillan for 14 days and it went away, but was

> very painful for awhile. I have NOT taken vitamin B since except what

> I get in my foods. I do take A LOT of vitamin C though and also

> Vitamin E and also vitamin A. They help a little. But herbs helped

> the most.

>

> Jim.

[Guest guest]

I have a question about the vitamins. I have some b-complex and gave my husband

one a couple days in a role for energy. He said his kidneys hurt from it, is

that possible?

Im afraid he might be getting sick bc of me. Is it true about lyme attacking the

gallbladder? Im 28, had mine out at 12, he's 41 and had his out 4 years ago.

Which was a year after we were together and right after I got severely ill.

thanks

Christie Lynn

Re: [ ] Are B vitamins OK with Lyme?

any amount of vitamin B is really bad for women with Interstitial

Cystitis, it will definitely make you flare up. Could be the same for

prostatitis...

cathleen

Jim wrote:

>

> Yes, not ALl LLMD's are really LLMD's, or at least not good ones. But

> that is the same in any business.

>

> I took high dosages of vitamin B on a recommendation and after a couple

> months of pain during urinating I ended up with prostatitis. So I

> stopped it and too Amoxycillan for 14 days and it went away, but was

> very painful for awhile. I have NOT taken vitamin B since except what

> I get in my foods. I do take A LOT of vitamin C though and also

> Vitamin E and also vitamin A. They help a little. But herbs helped

> the most.

>

> Jim.

[Guest guest]

Not sure what the relationship is with B and Prostatitis, but I do

know it is a no, no for me to take any amount of it over and above

what I get in my food. I haven't had trouble with it the last two

years now, although I am having an enlarged prostate with the

problems I am having urinating as an indication. I am 67, so it is

expected. I am taking Saw Palmetto and Nettle ROOT for it. Seems to

help, at least from getting worse.

I had chronic prostatitis in the late eighties and throug a lot of

the 90's; but heavy barages of abx finally caused it to subside.

Good, DEEP, sex helped too. After awhile my doc said it couldn't be

prostatitis any more. He called it prostatosis. But on getting to a

more stable diet, etc., it went away for years, until the bout after

taking Vitamin 5 tablets about two and a half years ago.

Jim.

###

>

> I have a question about the vitamins. I have some b-complex and

gave my husband one a couple days in a role for energy. He said his

kidneys hurt from it, is that possible?

>

> Im afraid he might be getting sick bc of me. Is it true about lyme

attacking the gallbladder? Im 28, had mine out at 12, he's 41 and had

his out 4 years ago. Which was a year after we were together and

right after I got severely ill. thanks

>

> Christie Lynn

>

[Guest guest]

some people with IC seem to be able to tolerate vitamin B, though it is not

uncommon for it to be a problem. I cannot take it, but I am going to try

sublingual B to see if that makes a difference. Somehow I don't think it will

work out, but I have my fingers crossed. My B12 is at the low end of " normal "

and I'm quite sure I could benefit from a bit more B vitamins than what I get in

my food. I'm pretty nervous to try it, but if it works out I'll spread the word

that it may be worth a try for others as well. How else does one go about

increasing their vit B levels?

Tiff

[Guest guest]

I take different oral B's but don't absorb them well. Dr. C prescribed

injected B-12. Have you ever tried it? It should work well with your

bladder and are very easy to give oneself. I can even tolerate high levels

of vitamin C if it's injected or in IV form. My bladder does not tolerate

oral C at all.

Kenda

> some people with IC seem to be able to tolerate vitamin B, though it is not

> uncommon for it to be a problem. I cannot take it, but I am going to try

> sublingual B to see if that makes a difference. Somehow I don't think it will

> work out, but I have my fingers crossed. My B12 is at the low end of " normal "

> and I'm quite sure I could benefit from a bit more B vitamins than what I get

> in my food. I'm pretty nervous to try it, but if it works out I'll spread the

> word that it may be worth a try for others as well. How else does one go about

> increasing their vit B levels?

> Tiff

>

>

>

>

>

[Guest guest]

Kenda,

Have you tried Calcium Ascorbate - Ester C? is is non acidic. I just

started taking it and have had no reaction at all. I was very careful to

open the capsule and put a little in a smaller capsule for a few days to

try it out. I have not had a reaction at all. I do take it with a meal

too. My dr said her IC patients don't have a problem with the calcium

ascorbate/Ester C product. And my bladder is very sensitive, my diet is

very restricted.

Cathleen

Kenda Skaggs wrote:

>

> I take different oral B's but don't absorb them well. Dr. C prescribed

> injected B-12. Have you ever tried it? It should work well with your

> bladder and are very easy to give oneself. I can even tolerate high levels

> of vitamin C if it's injected or in IV form. My bladder does not tolerate

> oral C at all.

>

> Kenda

>

[Guest guest]

I've sort of avoided talking about this, but for a lot of us, B12 is a

central issue.

I've mentioned before that one of the biggest problems I've had due to

my Lyme is that my methylation cycle -- the biochemical cycle that

digests the sulfur in foods, and is responsible for feeding the

immune, energy (Krebs), and glutathione (detox) system -- simply broke

down under the onslaught of the disease.

A doctor name Amy Yasko observed many years back that this kind of

biochemical breakdown is universal in autistic kids. She speculated

that it happened when some kind of immune shock (environmental, viral,

bacterial, or whatever) hit the system of someone who already had

faulty gene function in a cluster of the genes that support

methylation. (This is one sensible explanation that resolves the

debate between mothers who insist that the vaccines triggered their

kids' autism, and the doctors who insist it's not possible. Most kids

do, in fact, clear the mercury just fine, because their detox is

working as it should. But for a handful of kids with gene mutations,

the mercury breaks their methylation cycle, and sends them into

autism.) The shock causes the immune system to upregulate, and

basically get stuck there. When that happens, the body steals

resources from the methylation cycle. Eventually, it breaks down --

and when that happens, you don't make energy, you don't detox, and

your immune system stays stuck in overdrive forever -- usually going

after the wrong things, like your own tissues.

Yasko developed a protocol that tests autistic kids for about 40 genes

that contribute to methylation. Based on the results, she designs an

individualized staged series of supplements and drugs to be taken in a

certain order, which re-start the cycle and support its continued

function. Most of the supplements are vitamins or amino acids that are

essential to the cycle. She's had remarkable results with this over

the past few years, and Discover magazine even did an article on the

promise of her approach.

B vitamins -- particularly niacin, B6, and B12 -- figure largely in

this whole scheme. Depending on which genes are malfunctioning and

where the cycle is broken, these may not be metabolized at all well --

or they may be absolutely essential to the jump-starting process.

In early 2005, I met a researcher on a CFS list who had come to

believe that many adults with chronic illnesses like CFS and FM had

the same methylation breakdown problem, only acquired it at a later

stage of development and thus had a different set of symptoms. He

gathered together a pilot group of 60+ CFS patients to try his thesis

on. I was one of them. We all agreed to proceed with Dr. Yasko's

protocol, and she agreed to work with us.

In this same time frame, completely independently of this, a CFS

doctor I was working with in LA put me on an injected cocktail of B12,

AMP, and glutathione. I took it every other day for nearly a year, and

once a week for another year. I began to get better almost immediately

-- and the improvement accelerated with the addition of the Yasko

drugs three months later. (The genetic tests revealed that, in my

case, B12 supplementation was absolutely critical, since among other

chaos, I'm missing three genes that are responsible for processing

it.) In June, I could barely get out of bed more than one day a week,

and couldn't remember three numbers in order. By November, I was down

to 2-3 bed-ridden days per week, blogging at top-rated blog, and

getting ready to start to graduate school. It happened that fast.

Because people whose methylation is compromised don't detox everyday

crud, it builds up in the system. This is why autistic kids often have

insanely high heavy metals loads in their systems, and are prone to

low-grade infections that their bodies just can't fend off. This

buildup (says the theory) causes the muscle pain of FM, and the brain

fog of CFS. It can exacerbate IC, and cause IBS (also common in

autistic people). The Yasko process is structured to re-start the

detox cycle, and thus enable the body to clear this accumulated load.

It was while I was working this protocol that I became familiar with

the term " herxing " -- and endured some brutal ones before I learned to

manage it. But that's how I knew it was working: for every bad week of

herx, I started having some wonderfully great days.

I was on Yasko for two years, with amazing results. I'm now a (paid!)

fellow at a major policy think tank in Washington, and my MS is almost

finished. But, a year ago, I mentioned to the researcher (now a

trusted friend and advisor) that while my pain and brain were sooo

much better, the exhaustion and low-grade infections were lingering.

(Most of the other patients got their energy back, too, because as

glutathione came up, their Krebs cycles came back online. I wasn't

getting that.) He looked at my file, and mentioned that about 20% of

the patients he'd been working with fit the same pattern -- and all of

them who'd had an Igenex test had come up positive for Lyme. He

suggested it was time for me to find an LLMD. So I did. He was right

(as usual). And now I'm here.

This is how I know so much about all these supplements, and managing

herx. Right now, my friend's research is starting to become public,

and it's creating quite a buzz in the CFS medical community, which is

very gratifying for all of us who were involved. But he's already

onto his next project. He's got a strong suspicion (if not outright

conviction) that Lyme is one of the major triggers of CFS; and he can

describe in detail the pathways by which Lyme acts in the body to

break methylation. If he's right, Yasko may eventually become an

important piece of the arsenal for stimulating the immune system to

defeat and clear Lyme.

Long and complicated -- and this isn't a tenth of it. But it does

explain where I've been, and where I'm coming from on this. And it

also suggests an answer to the question of why some of us do great on

B12, and others really don't. Tiff, if you try to increase your B12

intake and don't get anywhere with it, you might consider whether

you've got a methylation/genetic issue that's keeping your levels low.

Sara

On Oct 31, 2008, at 3:56 PM, Kenda Skaggs wrote:

> I take different oral B's but don't absorb them well. Dr. C

> prescribed

> injected B-12. Have you ever tried it? It should work well with your

> bladder and are very easy to give oneself. I can even tolerate high

> levels

> of vitamin C if it's injected or in IV form. My bladder does not

> tolerate

> oral C at all.

>

> Kenda

>

>

[Guest guest]

Wow Sara! Your background story is interesting! Thank you for sharing your

story - it sounds like that research is pertinent. Can you recommend any good

sources of info to read further about the methylation cycle?

-

[Guest guest]

Sara,

Excellent post! Thank you!

What tests did you do to know that your methylation pathway was broken?

On Fri, Oct 31, 2008 at 7:56 PM, Sara

<srobinson@...>wrote:

> I've sort of avoided talking about this, but for a lot of us, B12 is a

> central issue.

>

> I've mentioned before that one of the biggest problems I've had due to

> my Lyme is that my methylation cycle -- the biochemical cycle that

> digests the sulfur in foods, and is responsible for feeding the

> immune, energy (Krebs), and glutathione (detox) system -- simply broke

> down under the onslaught of the disease.

>

> A doctor name Amy Yasko observed many years back that this kind of

> biochemical breakdown is universal in autistic kids. She speculated

> that it happened when some kind of immune shock (environmental, viral,

> bacterial, or whatever) hit the system of someone who already had

> faulty gene function in a cluster of the genes that support

> methylation. (This is one sensible explanation that resolves the

> debate between mothers who insist that the vaccines triggered their

> kids' autism, and the doctors who insist it's not possible. Most kids

> do, in fact, clear the mercury just fine, because their detox is

> working as it should. But for a handful of kids with gene mutations,

> the mercury breaks their methylation cycle, and sends them into

> autism.) The shock causes the immune system to upregulate, and

> basically get stuck there. When that happens, the body steals

> resources from the methylation cycle. Eventually, it breaks down --

> and when that happens, you don't make energy, you don't detox, and

> your immune system stays stuck in overdrive forever -- usually going

> after the wrong things, like your own tissues.

>

> Yasko developed a protocol that tests autistic kids for about 40 genes

> that contribute to methylation. Based on the results, she designs an

> individualized staged series of supplements and drugs to be taken in a

> certain order, which re-start the cycle and support its continued

> function. Most of the supplements are vitamins or amino acids that are

> essential to the cycle. She's had remarkable results with this over

> the past few years, and Discover magazine even did an article on the

> promise of her approach.

>

> B vitamins -- particularly niacin, B6, and B12 -- figure largely in

> this whole scheme. Depending on which genes are malfunctioning and

> where the cycle is broken, these may not be metabolized at all well --

> or they may be absolutely essential to the jump-starting process.

>

> In early 2005, I met a researcher on a CFS list who had come to

> believe that many adults with chronic illnesses like CFS and FM had

> the same methylation breakdown problem, only acquired it at a later

> stage of development and thus had a different set of symptoms. He

> gathered together a pilot group of 60+ CFS patients to try his thesis

> on. I was one of them. We all agreed to proceed with Dr. Yasko's

> protocol, and she agreed to work with us.

>

> In this same time frame, completely independently of this, a CFS

> doctor I was working with in LA put me on an injected cocktail of B12,

> AMP, and glutathione. I took it every other day for nearly a year, and

> once a week for another year. I began to get better almost immediately

> -- and the improvement accelerated with the addition of the Yasko

> drugs three months later. (The genetic tests revealed that, in my

> case, B12 supplementation was absolutely critical, since among other

> chaos, I'm missing three genes that are responsible for processing

> it.) In June, I could barely get out of bed more than one day a week,

> and couldn't remember three numbers in order. By November, I was down

> to 2-3 bed-ridden days per week, blogging at top-rated blog, and

> getting ready to start to graduate school. It happened that fast.

>

> Because people whose methylation is compromised don't detox everyday

> crud, it builds up in the system. This is why autistic kids often have

> insanely high heavy metals loads in their systems, and are prone to

> low-grade infections that their bodies just can't fend off. This

> buildup (says the theory) causes the muscle pain of FM, and the brain

> fog of CFS. It can exacerbate IC, and cause IBS (also common in

> autistic people). The Yasko process is structured to re-start the

> detox cycle, and thus enable the body to clear this accumulated load.

> It was while I was working this protocol that I became familiar with

> the term " herxing " -- and endured some brutal ones before I learned to

> manage it. But that's how I knew it was working: for every bad week of

> herx, I started having some wonderfully great days.

>

> I was on Yasko for two years, with amazing results. I'm now a (paid!)

> fellow at a major policy think tank in Washington, and my MS is almost

> finished. But, a year ago, I mentioned to the researcher (now a

> trusted friend and advisor) that while my pain and brain were sooo

> much better, the exhaustion and low-grade infections were lingering.

> (Most of the other patients got their energy back, too, because as

> glutathione came up, their Krebs cycles came back online. I wasn't

> getting that.) He looked at my file, and mentioned that about 20% of

> the patients he'd been working with fit the same pattern -- and all of

> them who'd had an Igenex test had come up positive for Lyme. He

> suggested it was time for me to find an LLMD. So I did. He was right

> (as usual). And now I'm here.

>

> This is how I know so much about all these supplements, and managing

> herx. Right now, my friend's research is starting to become public,

> and it's creating quite a buzz in the CFS medical community, which is

> very gratifying for all of us who were involved. But he's already

> onto his next project. He's got a strong suspicion (if not outright

> conviction) that Lyme is one of the major triggers of CFS; and he can

> describe in detail the pathways by which Lyme acts in the body to

> break methylation. If he's right, Yasko may eventually become an

> important piece of the arsenal for stimulating the immune system to

> defeat and clear Lyme.

>

> Long and complicated -- and this isn't a tenth of it. But it does

> explain where I've been, and where I'm coming from on this. And it

> also suggests an answer to the question of why some of us do great on

> B12, and others really don't. Tiff, if you try to increase your B12

> intake and don't get anywhere with it, you might consider whether

> you've got a methylation/genetic issue that's keeping your levels low.

>

> Sara

>

[Guest guest]

Hello Sara, you sound like an incredible intelligent woman as well as an

absolutely top notch writer. I was interested in your treatise(medical advice)

especially on autism. I was infected with Lyme in '94, able to put myself in

complete remission for 4 years by eating no meat, sweets, taking massive

amounts of vitamins and herbs, and loosing 30 pounds by not eating much, and

working out on a treadmill one hour each day, after which my clothes would be

as

wet as if I jumped in a river. In '99 I had slipped on some of my regimens

and began to pass out while walking or even setting. A doctor finally

diagnosed my Lyme in 2001 when I could hardly walk one day. Went on to learn

that

doctors are not created equal plus that some health care providers are better

than doctors. I have experimented with many possible Lyme fighters, such as

the Rife machine(read about it at) _www.Royalrife.com_

(http://www.Royalrife.com)

Herbs such as cat's claw, both liquid or capsule, garlic plus others and a

great number of vitamins and minerals. I currently, and have been taking

since '94 about 30 separate vitamin/mineral capsules daily which includes a

standard B vitamin complex, c, e, potassium, manganese, calcium, zinc etc. A

little about garlic, this herb is very potent, if a Lyme infected person takes

this, depending on their Lyme load, they can have a strong herx. First

starting out with 200 mg a day there should be no discernable effect, but as

one

goes to 400 mg, 600 mg there can very likely be a noticeable herx. I have been

taking 2800 mg of garlic daily for about 4 or 5 years now. Another weapon

with Lyme is L-glutamine which I have only taken in powder form. I discovered

this in 2002 while reading several books about Lyme and regular medical

books, mostly about alternative medicine. I took about 3 teaspoons of this

powder

and began to herx in a very bad way, i.e., passing out. I did not resume

taking it again until early this year. My Lyme infection load was much lower

than in 2002 so I could take it without much trouble. My legs and feet were

swollen, caused by the Lyme bacteria in the feet toes and legs. I mix knoxx

gelatin powder and the L-glutamine in a big of glass with orange juice and

water. Two big heaping teaspoons of Knoxx gelatin and one very large heaping

teaspoon of L-glutamine. My lower legs, feet and toes became very hot,

burning and itchy from this treatment. Small sores broke out on my legs in

some

places as the Lyme bacteria tried to flea the L-glutamine. You see the

L-glutamine can kill the bacteria even in the cell membrane where main stream

medicine can not reach it. I would alleviate the burning and itching with hot

water which I would run on my legs and feet. It helped as it will also kill

Lyme bacteria close to the skin surface. My feet and ankles went back to

normal as the bacteria was killed off. It took about 30 days with some days

when

I did not use the L-glutamine. I caution anyone who might be brave enough to

try this approach that it can be extremely dangerous if you are heavily

infected with Lyme as it can cause neurological harm.

I know from long experience that this is probably a waste of my time and

possible yours, if you bother to read it, as most people are afraid to follow

any advice from a non doctor and rightly so. I have lived it and am now 76

years of age. I feel good each day and walk for one hour each day, outside if

possible or in a shopping mall if it is too hot or too cold or raining.

I wish you all only the best and pray that you will get better and that a

complete cure will be found for Lyme one day very soon.

Sidney

PS Vote for McCain to save your liberty and your children's liberty. I

don't care much for McCain, but boy do I like Palin. I want someone with

common sense who has lived an ordinary life, not all of the lawyers who now

run the house and senate. That is what is wrong with our government now. Is

it too late to be fixed or do we go the route of Venezuela, Mexico etc?

In a message dated 11/1/2008 12:03:19 A.M. Eastern Daylight Time,

srobinson@... writes:

I've sort of avoided talking about this, but for a lot of us, B12 is a

central issue.

I've mentioned before that one of the biggest problems I've had due to

my Lyme is that my methylation cycle -- the biochemical cycle that

digests the sulfur in foods, and is responsible for feeding the

immune, energy (Krebs), and glutathione (detox) system -- simply broke

down under the onslaught of the disease.

A doctor name Amy Yasko observed many years back that this kind of

biochemical breakdown is universal in autistic kids. She speculated

that it happened when some kind of immune shock (environmental, viral,

bacterial, or whatever) hit the system of someone who already had

faulty gene function in a cluster of the genes that support

methylation. (This is one sensible explanation that resolves the

debate between mothers who insist that the vaccines triggered their

kids' autism, and the doctors who insist it's not possible. Most kids

do, in fact, clear the mercury just fine, because their detox is

working as it should. But for a handful of kids with gene mutations,

the mercury breaks their methylation cycle, and sends them into

autism.) The shock causes the immune system to upregulate, and

basically get stuck there. When that happens, the body steals

resources from the methylation cycle. Eventually, it breaks down --

and when that happens, you don't make energy, you don't detox, and

your immune system stays stuck in overdrive forever -- usually going

after the wrong things, like your own tissues.

Yasko developed a protocol that tests autistic kids for about 40 genes

that contribute to methylation. Based on the results, she designs an

individualized staged series of supplements and drugs to be taken in a

certain order, which re-start the cycle and support its continued

function. Most of the supplements are vitamins or amino acids that are

essential to the cycle. She's had remarkable results with this over

the past few years, and Discover magazine even did an article on the

promise of her approach.

B vitamins -- particularly niacin, B6, and B12 -- figure largely in

this whole scheme. Depending on which genes are malfunctioning and

where the cycle is broken, these may not be metabolized at all well --

or they may be absolutely essential to the jump-starting process.

In early 2005, I met a researcher on a CFS list who had come to

believe that many adults with chronic illnesses like CFS and FM had

the same methylation breakdown problem, only acquired it at a later

stage of development and thus had a different set of symptoms. He

gathered together a pilot group of 60+ CFS patients to try his thesis

on. I was one of them. We all agreed to proceed with Dr. Yasko's

protocol, and she agreed to work with us.

In this same time frame, completely independently of this, a CFS

doctor I was working with in LA put me on an injected cocktail of B12,

AMP, and glutathione. I took it every other day for nearly a year, and

once a week for another year. I began to get better almost immediately

-- and the improvement accelerated with the addition of the Yasko

drugs three months later. (The genetic tests revealed that, in my

case, B12 supplementation was absolutely critical, since among other

chaos, I'm missing three genes that are responsible for processing

it.) In June, I could barely get out of bed more than one day a week,

and couldn't remember three numbers in order. By November, I was down

to 2-3 bed-ridden days per week, blogging at top-rated blog, and

getting ready to start to graduate school. It happened that fast.

Because people whose methylation is compromised don't detox everyday

crud, it builds up in the system. This is why autistic kids often have

insanely high heavy metals loads in their systems, and are prone to

low-grade infections that their bodies just can't fend off. This

buildup (says the theory) causes the muscle pain of FM, and the brain

fog of CFS. It can exacerbate IC, and cause IBS (also common in

autistic people). The Yasko process is structured to re-start the

detox cycle, and thus enable the body to clear this accumulated load.

It was while I was working this protocol that I became familiar with

the term " herxing " -- and endured some brutal ones before I learned to

manage it. But that's how I knew it was working: for every bad week of

herx, I started having some wonderfully great days.

I was on Yasko for two years, with amazing results. I'm now a (paid!)

fellow at a major policy think tank in Washington, and my MS is almost

finished. But, a year ago, I mentioned to the researcher (now a

trusted friend and advisor) that while my pain and brain were sooo

much better, the exhaustion and low-grade infections were lingering.

(Most of the other patients got their energy back, too, because as

glutathione came up, their Krebs cycles came back online. I wasn't

getting that.) He looked at my file, and mentioned that about 20% of

the patients he'd been working with fit the same pattern -- and all of

them who'd had an Igenex test had come up positive for Lyme. He

suggested it was time for me to find an LLMD. So I did. He was right

(as usual). And now I'm here.

This is how I know so much about all these supplements, and managing

herx. Right now, my friend's research is starting to become public,

and it's creating quite a buzz in the CFS medical community, which is

very gratifying for all of us who were involved. But he's already

onto his next project. He's got a strong suspicion (if not outright

conviction) that Lyme is one of the major triggers of CFS; and he can

describe in detail the pathways by which Lyme acts in the body to

break methylation. If he's right, Yasko may eventually become an

important piece of the arsenal for stimulating the immune system to

defeat and clear Lyme.

Long and complicated -- and this isn't a tenth of it. But it does

explain where I've been, and where I'm coming from on this. And it

also suggests an answer to the question of why some of us do great on

B12, and others really don't. Tiff, if you try to increase your B12

intake and don't get anywhere with it, you might consider whether

you've got a methylation/you've got a methylation/<WBR>genetic issue that'

Sara

On Oct 31, 2008, at 3:56 PM, Kenda Skaggs wrote:

> I take different oral B's but don't absorb them well. Dr. C

> prescribed

> injected B-12. Have you ever tried it? It should work well with your

> bladder and are very easy to give oneself. I can even tolerate high

> levels

> of vitamin C if it's injected or in IV form. My bladder does not

> tolerate

> oral C at all.

>

> Kenda

>

>

**************Plan your next getaway with AOL Travel. Check out Today's Hot

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[Guest guest]

Tiff,

I have IC and Solaray sublingual B without citric acid works good for me.  

 

Deb

From: Tiff <bestel63@...>

Subject: [ ] Re: Are B vitamins OK with Lyme?

Date: Friday, October 31, 2008, 4:38 PM

some people with IC seem to be able to tolerate vitamin B, though it is not

uncommon for it to be a problem. I cannot take it, but I am going to try

sublingual B to see if that makes a difference. Somehow I don't think it will

work out, but I have my fingers crossed. My B12 is at the low end of " normal "

and I'm quite sure I could benefit from a bit more B vitamins than what I get in

my food. I'm pretty nervous to try it, but if it works out I'll spread the word

that it may be worth a try for others as well. How else does one go about

increasing their vit B levels?

Tiff

[Guest guest]

Sara,

My son was diagnosed with Asperger's Syndrome (autism) last summer. I

myself acquired Lyme at the age of 15 and was under treated. I'm 30

now, and have been sick for several years, with varying diagnoses. I

would have had Lyme at the time I was pregnant. I have heard about

Lyme being a possible connection to autism in the past, and what you

say here aligns with that and makes sense to me. Do you have any

suggested readings for one who might want to become more educated on

this subject??

Much thanks!

>

> I've sort of avoided talking about this, but for a lot of us, B12 is a

> central issue.

>

> I've mentioned before that one of the biggest problems I've had due

to ....

[Guest guest]

,

2 of my 3 kids with congenital Lyme also have autism (AS and PDD-NOS - both

high functioning). And yes, Lyme can induce autism congenitally.

Here is a web page about the Lyme-autism connection

http://www.autism-in-the-christian-home.com/lyme-autism-connection.html .

Here is a terrific book that helped me understand about my kids' autism and

my own chronic Lyme disease. http://www.lymebook.com/1a2z

This website is also awesome http://www.lymeinducedautism.com/

Good luck!

On Sat, Nov 1, 2008 at 10:38 PM, <astendahl@...> wrote:

> Sara,

>

> My son was diagnosed with Asperger's Syndrome (autism) last summer. I

> myself acquired Lyme at the age of 15 and was under treated. I'm 30

> now, and have been sick for several years, with varying diagnoses. I

> would have had Lyme at the time I was pregnant. I have heard about

> Lyme being a possible connection to autism in the past, and what you

> say here aligns with that and makes sense to me. Do you have any

> suggested readings for one who might want to become more educated on

> this subject??

> Much thanks!

>

>

[Guest guest]

Hi Sara,

I found your post fascinating and I'd love to understand what the

" methylation cycle " is because I suspect it may be part of the answer

for my health problems.

I am wondering also what AMP is....?

And, I'd like to know, as another reader also asked, which genetic tests

did you take?

I've been diagnosed with neuro lyme and my LLMD just started me on

glutathione infusions--2500 2 X week, which have finally, for the first

time, made my neuropathy symptoms subside to a minimal level. B12 shots

alone didn't seem to help. I've been tested for HLADR4 and am positive

for DR1 and DR15 which my LLMD says might make it harder for me to

" detox " .

In addition to Lyme acquired in 2003, I have long had muscle problems,

myofascial pain syndrome, since my teens and I'm now 56. Several hours

after exercise I get massive trigger points and muscle pain. If I do

nothing, my muscles weaken and I get more and more pain from doing less.

I've just had my muscle function tested and all was normal...but

nevertheless several hours after the test (bloodwork before & after a

treadmill test) I was in terrible pain. I have often wondered, and my

various physical therapists with me, if there isn't some fundamental

metabolic function that just isn't working right to clear my system of

even ordinary toxins like the ammonia and lactic acid created from

exercise.

Now, with lyme, my muscle & tendon aches & pains are REALLY bad along

with all the neuro symptoms (numbness & tingling of limbs, burning on

skin, brain fog, etc.) and the only thing so far that has helped is the

glutathione infusions. My LLMD wants me to have only 8 of these

infusions and is going to try to maintain me with oral antioxidants and

if needed, glutathione nebulizers.

Any further answers to my questions and or links to more information

about your treatment protocol (naturally I will google to find what I

can on my own) would be greatly appreciated.

Thank you for taking the time to write this long and interesting post!

Maureen

[Guest guest]

Maureen,

Can u tell me more about the glutathione inhale. What would I ask my doctor for?

I have severe mcs, that would probably help right? Also are the injections ur

getting really expensive?

Christie Lynn

RE: [ ] Are B vitamins OK with Lyme?

Hi Sara,

I found your post fascinating and I'd love to understand what the

" methylation cycle " is because I suspect it may be part of the answer

for my health problems.

I am wondering also what AMP is....?

And, I'd like to know, as another reader also asked, which genetic tests

did you take?

I've been diagnosed with neuro lyme and my LLMD just started me on

glutathione infusions--2500 2 X week, which have finally, for the first

time, made my neuropathy symptoms subside to a minimal level. B12 shots

alone didn't seem to help. I've been tested for HLADR4 and am positive

for DR1 and DR15 which my LLMD says might make it harder for me to

" detox " .

In addition to Lyme acquired in 2003, I have long had muscle problems,

myofascial pain syndrome, since my teens and I'm now 56. Several hours

after exercise I get massive trigger points and muscle pain. If I do

nothing, my muscles weaken and I get more and more pain from doing less.

I've just had my muscle function tested and all was normal...but

nevertheless several hours after the test (bloodwork before & after a

treadmill test) I was in terrible pain. I have often wondered, and my

various physical therapists with me, if there isn't some fundamental

metabolic function that just isn't working right to clear my system of

even ordinary toxins like the ammonia and lactic acid created from

exercise.

Now, with lyme, my muscle & tendon aches & pains are REALLY bad along

with all the neuro symptoms (numbness & tingling of limbs, burning on

skin, brain fog, etc.) and the only thing so far that has helped is the

glutathione infusions. My LLMD wants me to have only 8 of these

infusions and is going to try to maintain me with oral antioxidants and

if needed, glutathione nebulizers.

Any further answers to my questions and or links to more information

about your treatment protocol (naturally I will google to find what I

can on my own) would be greatly appreciated.

Thank you for taking the time to write this long and interesting post!

Maureen

[Guest guest]

This is a website of a cardiologist, Dr. , who is using Dr. Amy

Yasko's methlyation cycle and testing to treat his patients with heart

disease. It's a pretty good summary of the methylation cycle and the 30

genetic variations that Dr. Yasko tests for:

http://heartfixer.com/AMRI-Nutrigenomics.htm

Dr. Yasko's website is: http://holistichealth.com

She also has this site with some info:

http://www.knowyourgenetics.com/Welcome.html

Amy

On Sun, Nov 2, 2008 at 12:22 PM, Maureen Havenner <havenner@...>wrote:

> Hi Sara,

>

> I found your post fascinating and I'd love to understand what the

> " methylation cycle " is because I suspect it may be part of the answer

> for my health problems.

>

> I am wondering also what AMP is....?

>

> And, I'd like to know, as another reader also asked, which genetic tests

> did you take?

>

> I've been diagnosed with neuro lyme and my LLMD just started me on

> glutathione infusions--2500 2 X week, which have finally, for the first

> time, made my neuropathy symptoms subside to a minimal level. B12 shots

> alone didn't seem to help. I've been tested for HLADR4 and am positive

> for DR1 and DR15 which my LLMD says might make it harder for me to

> " detox " .

>

> In addition to Lyme acquired in 2003, I have long had muscle problems,

> myofascial pain syndrome, since my teens and I'm now 56. Several hours

> after exercise I get massive trigger points and muscle pain. If I do

> nothing, my muscles weaken and I get more and more pain from doing less.

> I've just had my muscle function tested and all was normal...but

> nevertheless several hours after the test (bloodwork before & after a

> treadmill test) I was in terrible pain. I have often wondered, and my

> various physical therapists with me, if there isn't some fundamental

> metabolic function that just isn't working right to clear my system of

> even ordinary toxins like the ammonia and lactic acid created from

> exercise.

>

> Now, with lyme, my muscle & tendon aches & pains are REALLY bad along

> with all the neuro symptoms (numbness & tingling of limbs, burning on

> skin, brain fog, etc.) and the only thing so far that has helped is the

> glutathione infusions. My LLMD wants me to have only 8 of these

> infusions and is going to try to maintain me with oral antioxidants and

> if needed, glutathione nebulizers.

>

> Any further answers to my questions and or links to more information

> about your treatment protocol (naturally I will google to find what I

> can on my own) would be greatly appreciated.

>

> Thank you for taking the time to write this long and interesting post!

>

> Maureen

>

>

>

[Guest guest]

Hi Christie Lynn,

I have absolutely no idea of whether glutathione would help with mcs.

Mine was prescribed for me because I have severe neurological

symptoms...burning and tingling of my feet and legs, my forearms and

hands, burning on my skin and other tissues and weakening muscles. The

glutathione has helped tremendously with mitigating most, but not all of

those symptoms. My LLMD said that the goal is to lower superoxides and

thus cytokines (toxic die off from the lyme plus my own immune system

fighting it off).

I am early in my treatment, so I only know a little right now, but I

trust my seattle LLMD. My glutathione infusions are given to me by a ND

and are not covered by my insurance. They cost $110 each one and I go

twice a week. I believe that is in part why my LLMD wants me to try to

maintain my progress after 8 infusions by using other oral antioxidant

products. I've just been given something called FibroBoost for this

purpose. Another product commonly used for detox is alpha lipoic acid

which just didn't help me much. He said that if I don't maintain my

progress he will order nebulized glutathione for me which will be made

at a compounding pharmacy to his direction (and I don't know what that

would be 'cause I'm not there yet.) The nebulized glutathione will be

less expensive than the infusions and presumably a much lower dose.

In addition, my integrative physician, noting that I have improved on

glutathione, has suggested that after the infusions stop I should try to

boost my natural glutathione levels by taking 2 level tablespoons of

glutamine and 3-4 tablespoons of whey protein daily.

My LLMD just went to the conference in San Francisco & says that there

is even more emphasis among LLMDs of the need to support their patients

through detox.

Just for your information, I am taking Biaxin 500 mg 2 X day and Omnicef

300 mg 2 pills twice a day.

Hope this helps answer your questions.

Maureen

[Guest guest]

Maureen, it seems distinctly possible we are currently seeing the same

doctor. Mine's in West Seattle, and has a solid grasp of the role

glutathione plays in detox. He's asked me to forward info on the Yasko

stuff, because my brief description made a lot of sense to him.

Christie, GSH should, in theory, help with MCS. It's the main

antioxidant produced by the body. Anything that reduces oxides, clears

cytokines, and boosts detox seems likely to have a net calming effect

on immune function. Many of us in the CFS trial did see a reduction in

the number and severity of our allergies. I'm allergic to soy (and

always have been); but find my reactions now are much milder than they

once were.

A lot of us took whey protein with good result, too. Whey comes in

several forms, some not as good as others. RenewPro is the product

most optimized for raising GSH, and I recommend it highly.

On the other hand, we were specifically warned off glutamine. I'm

trying to remember why -- it's been a while. My recollection is that

there's a counterintuitive twist in the system that make supplemental

glutamine an antagonist to the cycle -- but that may only be true for

people with certain SNPs. I know I used to take it, and felt better

(less sore, mostly) when I got off of it because it was

contraindicated by my SNP panel.

That's the problem with all this stuff. What works to open pathways in

one person interacts badly with the genes of another, causing more

problems than it solves. Some of us did great on SAMe (which is one of

the last things produced down toward the end of the cycle). Others of

us, with particular kinks in the cycle (IIRC, it was a COMT or SUOX

issue, both of which I have), felt great for three days and then

crashed hard on it. The upside is that people who understand the

intricacies of the cycle can tell you a lot about which genes are

working just by noting what you do or don't react to.

Sara

On Nov 3, 2008, at 9:13 AM, Maureen Havenner wrote:

> Hi Christie Lynn,

>

> I have absolutely no idea of whether glutathione would help with mcs.

> Mine was prescribed for me because I have severe neurological

> symptoms...burning and tingling of my feet and legs, my forearms and

> hands, burning on my skin and other tissues and weakening muscles. The

> glutathione has helped tremendously with mitigating most, but not

> all of

> those symptoms. My LLMD said that the goal is to lower superoxides and

> thus cytokines (toxic die off from the lyme plus my own immune system

> fighting it off).

>

> I am early in my treatment, so I only know a little right now, but I

> trust my seattle LLMD. My glutathione infusions are given to me by a

> ND

> and are not covered by my insurance. They cost $110 each one and I go

> twice a week. I believe that is in part why my LLMD wants me to try to

> maintain my progress after 8 infusions by using other oral antioxidant

> products. I've just been given something called FibroBoost for this

> purpose. Another product commonly used for detox is alpha lipoic acid

> which just didn't help me much. He said that if I don't maintain my

> progress he will order nebulized glutathione for me which will be made

> at a compounding pharmacy to his direction (and I don't know what that

> would be 'cause I'm not there yet.) The nebulized glutathione will be

> less expensive than the infusions and presumably a much lower dose.

>

> In addition, my integrative physician, noting that I have improved on

> glutathione, has suggested that after the infusions stop I should

> try to

> boost my natural glutathione levels by taking 2 level tablespoons of

> glutamine and 3-4 tablespoons of whey protein daily.

>

> My LLMD just went to the conference in San Francisco & says that there

> is even more emphasis among LLMDs of the need to support their

> patients

> through detox.

>

> Just for your information, I am taking Biaxin 500 mg 2 X day and

> Omnicef

> 300 mg 2 pills twice a day.

>

> Hope this helps answer your questions.

>

> Maureen

>

>