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Bryan Rosner's Lyme Disease Video Blog

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I decided not to blog with text when instead I can reach my readership with video blogging—much more exciting! The field of Lyme Disease research and alternative treatment is constantly evolving. I hope this blog helps you gain insight into this elusive and widespread infection. Thanks for visiting! To learn more about my research, please check out my two best-selling Lyme Disease books:

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#3647 - 06/19/08 11:14 AM The Lyme Disease End Game
BryanRosner Administrator
Forum Veteran


Registered: 11/08/06
Posts: 268
Loc: Mountains of Northern CA
June 19, 2008

In this video I am talking about the last 10% of the recovery process, after you have removed most of the bacteria from the body.




Please read the Blog Disclaimer before viewing this Video!

Feel free to join the discussion by commenting below.
To do so, use the reply form below, after you have logged in. Not a member yet? Join here. Membership is easy and free.


_________________________
Bryan Rosner

DISCLAIMER: Bryan Rosner is a journalist, not a healthcare provider or doctor.

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#3648 - 06/19/08 01:23 PM Re: The Lyme Disease End Game [Re: BryanRosner]
Connie
Spirochete Hunter


Registered: 03/06/08
Posts: 58
Bryan,

This is interesting information.
I am curious...how can a person know, if they are still symptomatic, that they are 90% healed? You mention that it's possible to have a number of symptoms, even when the infections are 99% gone...is this Dr. Horowitz's opinion? I can't remember what he said at the conference. If so, how does one know how many bugs are left, if that person is still highly symptomatic? I am not sure whether I believe in "post-Lyme" syndrome; I think it is possible, but I wonder to what extent symptoms are still possible, when the infections are gone. Surely it depends upon the extent of damage in the body, but how many people still feel poorly when borrelia and co-infections are gone? Sigh. If only we knew!

BTW, I agree with your point about "re-building" the body after the storm is past; however, IMHO, I do believe that just as much attention to supportive therapies should be given at the beginning of the process as the end, to help the body effectively fight infection.

Thanks for the information!
Looks like a nice place to get some sun over there...I do miss it here in rainy Costa Rica!

Connie
http://www.lymebytes.blogspot.com
_________________________
Connie Strasheim
Author, "The Lyme Disease Survival Guide"
http://www.lymebytes.blogspot.com

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#3649 - 06/19/08 02:10 PM Re: The Lyme Disease End Game [Re: Connie]
BryanRosner Administrator
Forum Veteran


Registered: 11/08/06
Posts: 268
Loc: Mountains of Northern CA
Connie, you are right in all accounts. It is largely speculation; although, I believe, educated speculation. Dr. Horowitz has treated 11,000 chronic Lyme patients according to his presentation and this thought originated with him. But I'll concede that it is a theory.

I agree that rebuilding is important during recovery...I was just pointing out that in my opinion, the antibacterial aspect is critical early on.
_________________________
Bryan Rosner

DISCLAIMER: Bryan Rosner is a journalist, not a healthcare provider or doctor.

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#3650 - 06/19/08 02:21 PM Re: The Lyme Disease End Game [Re: BryanRosner]
Connie
Spirochete Hunter


Registered: 03/06/08
Posts: 58
Thanks for your response, Bryan.
So this is somewhat Horowitz' theory--I wonder how he came to these conclusions. He must have methods for testing to discern the level of infection that is still present in patients.
He definitely seems to have a lot of wisdom, though.
_________________________
Connie Strasheim
Author, "The Lyme Disease Survival Guide"
http://www.lymebytes.blogspot.com

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#3651 - 06/19/08 02:27 PM Re: The Lyme Disease End Game [Re: Connie]
BryanRosner Administrator
Forum Veteran


Registered: 11/08/06
Posts: 268
Loc: Mountains of Northern CA
He is definitely smart. But the more interesting part for me is that I have come to roughly the same conclusion. Not that the bacteria are not still there; they definitely are. But, that the majority of the problem transitions to becoming more about the body's continued over-reaction (or inappropriate reaction). This is why I was so intrigued by his talk - he was thinking along the same lines as I have been wondering about for some time.
_________________________
Bryan Rosner

DISCLAIMER: Bryan Rosner is a journalist, not a healthcare provider or doctor.

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#3652 - 06/19/08 03:09 PM Re: The Lyme Disease End Game [Re: BryanRosner]
Connie
Spirochete Hunter


Registered: 03/06/08
Posts: 58
Interesting.
Do you feel this theory applies to you, personally?
I would not be able to say for myself, as I still think my infection load is up for debate.

Hmmm...maybe I can steal a moment to pick Horowitz' brain at the LIA Conference next week.

Thanks again,

Connie
_________________________
Connie Strasheim
Author, "The Lyme Disease Survival Guide"
http://www.lymebytes.blogspot.com

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#3663 - 06/20/08 09:17 AM Re: The Lyme Disease End Game [Re: Connie]
solbrig56
New Researcher


Registered: 06/20/08
Posts: 1
Fortunetly I can say I may be approaching the END GAME as well. As much as I have been estatic about overal improvement with the way I feel, I can also admit that am often dissapointed and bewildered by consistent chronic symptoms that seem to persist despite much of the infection subsiding. I routinely still rife and take some herbs for the antibacterial component of the treatment but i wonder if they are doing much besides mental comfort, for the die off has seem to come to an end since I experience virtually no herxing now.

This is an important theory and is on par with my outlook. I feel as if my immune system is extremely "overactive" especially when I overfeed it with vit D. It is as if my immune system was once a general in terribly gruesome war and even though his environment is safe now and the war is over, he suffers from extreme post dramatic stress and is constantly commanding massive orders when the smallest threat is noticed.

I think retraining our immune systems to a normal functioning will require not only strengthening, but also some way of calming it down and keeping it at bay.

Just one last comment on your description- In my opinion supporting the body and the immune system is always of upmost importance and even more important during a heavy onslaught of bacteria phase- the greatest difference in the end game is the level of anti-bacterial can be greatly reduced where like you said, the entire emphasis is on supporting the immune system.

Thanks ros awesome blog!
Matthew


Edited by solbrig56 (06/20/08 09:42 AM)

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#3667 - 06/21/08 04:06 AM Re: The Lyme Disease End Game [Re: solbrig56]
ephylymie
New Researcher


Registered: 01/22/08
Posts: 1
Loc: Connecticut
Hey Bryan, I'm glad you do these posts! Thanks again.

Weither it be .1%, 1 percent or more left over in the body. After you gone through all the treatments, the

bottom line you will have a remainder left in the body doing what it does best, evading the immume system and

causing it to go awry.

as far as geting rid of it. I agree, I don't think you can. Or at least not with out doing major damage to

yourself.

I agree we should focus on,not killing it, but living with it. And as you said,specifically on the immune

system. I believe the answer to this disease is through answering some tough questions.



I personally was on both sides of the fence. And this goes hand in hand with the IDSA VS ILLADS.

When I had my first taste of lymes back in 97' I believe it was easily cured with the obligitory 30 days of

doxy. And for the most part I was. I lived my life as I should, going to school full time working full time and

living my life full throttle. I had no clue,I put this illness long behind me.


It wasn't until december of 2003, that I came down with a flu that I couldn't shake. I was sick and I kept

geting sicker. Looking back at it I probally had lymes that resurfaced along with it, just didn't know it at

that time.Months later, this time around I tested positive for cns lymes through a spinal tap. And I've been

battling lymes with abx ever since.


I've come to the conclusion, and it is my belief that once you introduce a virus into the picture, weither it

be a flu, or something else, thats when the acute lymes turns into cronic lymes.

That is where the controversy lies, everybody is missing part of the puzzle. Common sense tells us, it has to

to with the immune system. What else could it be?

Byran keep on this, don't stop with the research, your on the right track. Much appreiciated.

Ephraim Dean
_________________________
ephraim c dean

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#3670 - 06/21/08 04:48 PM Re: The Lyme Disease End Game [Re: BryanRosner]
Rich_Van_K
New Researcher


Registered: 06/21/08
Posts: 8
Hi, Bryan.

I don't know if you will remember me. I participated on Lyme-and-rife about four years ago, and you and I corresponded some.

I want to say that I like the direction you are going here, and I think I might be able to help.

Take a look at message number 43647 on Lyme-and-rife, which I posted yesterday, and also, take a look at the two files I posted in the files section of the group's website.

Basically, what I am suggesting is that the "last 10% of Lyme recovery," as you put it, is being held up by a partial block in the methylation cycle, which is also holding down glutathione. This combination keeps both the detox system and the immune system in dysfunctional states, and that prevents final recovery. I think this is how long-term Lyme disease meshes with chronic fatigue syndrome, and why there is so much overlap in the symptoms. And we now have a treatment for this partial block, which came from the autism community. It's all described in the files I posted.

I will be interested to hear what you think of this.

Rich Van Konynenburg, Ph.D.
richvank@aol.com

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#3672 - 06/21/08 05:32 PM Re: The Lyme Disease End Game [Re: Rich_Van_K]
BryanRosner Administrator
Forum Veteran


Registered: 11/08/06
Posts: 268
Loc: Mountains of Northern CA
I saw the post and your article in the files section. However, for the sake of expediency, can you please list here the supplements you are suggesting? In a simple, short post? I'm not asking for the substantiation - just the names of the supplements.

Clearly I believe there is a Lyme-autism connection:
http://www.lymebook.com/lyme-autism-connection


Edited by BryanRosner (06/21/08 05:37 PM)
_________________________
Bryan Rosner

DISCLAIMER: Bryan Rosner is a journalist, not a healthcare provider or doctor.

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#3674 - 06/21/08 06:03 PM Re: The Lyme Disease End Game [Re: BryanRosner]
Rich_Van_K
New Researcher


Registered: 06/21/08
Posts: 8
Hi, Bryan.

Yes, here is a short description of the simplified treatment approach:

March 26, 2008


SIMPLIFIED TREATMENT APPROACH
FOR LIFTING THE METHYLATION CYCLE BLOCK
IN CHRONIC FATIGUE SYNDROME

(Extracted from the full treatment program
developed by Amy Yasko, Ph.D., N.D.
which is used primarily in treating autism [1])

SUPPLEMENTS

1. FolaPro [2]: ¼ tablet (200mcg) daily
2. Intrinsi B12/folate [3]: ¼ tablet daily
3. General Vitamin Neurological Health Formula [4]: start with ¼ tablet and work up dosage as tolerated to 2 tablets daily
4. Phosphatidyl Serine Complex [5]: 1 softgel capsule daily
5. Activated B12 Guard [6]: 1 sublingual lozenge daily


The first two supplement tablets are difficult to break into quarters. We recommend that you obtain (from any pharmacy) a good-quality pill splitter to assist with this process. They can, alternatively, be crushed into powders, which are then separated on a flat surface using a knife or single-edged razor blade, and the powders can be mixed together. They can be taken orally with water, with or without food.
These supplements can make some patients sleepy, so in those cases they take them at bedtime. They can be taken at any time of day, with or without food.
GO SLOWLY. As the methylation cycle block is lifted, toxins are released and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Although this treatment approach consists only of nonprescription nutritional supplements, a few patients have reported adverse effects while on it. Therefore, it is necessary that patients be supervised by physicians while receiving this treatment.


[1] Yasko, Amy, and Gordon, Garry, The Puzzle of Autism, Matrix Development Publishing, Payson, AZ, 2006, p. 49.
[2] FolaPro is a registered trademark of Metagenics, Inc.
[3] Intrinsi B12/Folate is a registered trademark of Metagenics, Inc.
[4] General Vitamin Neurological Health Formula is formulated and supplied by Holistic Health Consultants LLC.
[5] Phosphatidyl Serine Complex is a product of Vitamin Discount Center.
[6] Activated B12 Guard is a registered trademark of Perque LLC.


Best regards,

Rich

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#3676 - 06/21/08 06:15 PM Re: The Lyme Disease End Game [Re: BryanRosner]
Rich_Van_K
New Researcher


Registered: 06/21/08
Posts: 8
Hi, Bryan.

Right on. I've met Tami and have corresponded with her by email. I think the methylation cycle block is the key to both autism and CFS. I believe that autism and CFS are essentially the same from the genetic and biochemical points of view. The differences in symptoms and in epidemiology result from the different ages at onset. In particular, the onset age for autism occurs before the brain is fully developed and interferes with brain development, yielding the characteristic brain-related symptoms of autism. Lyme disease is one entry path into autism or CFS for those who are genetically predisposed. If a genetically predisposed person contracts Lyme disease at an early age, they develop autism. If they contract it after their brain has developed, they get chronic fatigue syndrome. In both cases, the methylation cycle has a partial block, and glutathione is depleted. This was discovered first in autism by S. Jill James et al., and the successful treatment of autism involves lifting this partial block. I recognized in late 2004 that the same biochemical mechanism was going on in CFS, and subsequent treatment experience appears to be confirming that.

------

Hi, Bryan.

Just a few more comments to describe what I think the biochemical process is that carries a person who is genetically susceptible from Lyme disease into chronic fatigue syndrome (or into autism, if they are very young when they get Lyme):

The first point is that Borrelia burgdorferi have a big need for the amino acid cysteine to make several of their proteins, and of course, they take it from their "host." This is in the published literature.

Cysteine is normlly the rate-limiting amino acid for making glutathione, so this tends to lower the host's glutathione level, producing oxidative stress, which includes a rise in the concentration of hydrogen peroxide. There is a published paper reporting that Bb lowers the glutatione concentration and also lowers the activity of glutathione peroxidase, which normally converts hydrogen peroxide to water.

When hydrogen peroxide rises, Bb assumes the cyst form, which is more difficult to kill. This has been reported in a published paper.

When glutathione goes low enough, vitamin B12 loses its normal protection (it is normally stored in the form of glutathionylcobaamin). This is in the literature, too.

Toxins such as mercury build up because there is not enough glutathione to conjugate them and take them out of the body (the process of detoxication).

The toxins then react with the unprotected vitamin B12, and divert it from its normal conversion to methylcobalamin and adenosylcobalamin.

When methylcobalamin goes down, there is not enough to serve as a cofactor for methionine synthase, and the methylation cycle develops a partial block.

Since the folate cycle is linked to the methylation cycle at methionine synthase, it becomes blocked as well. A "folate trap" condition develops, in which folates drain out of the cells.

The partial block of methionine synthase causes sulfur metabolites to drain down the transsulfuration pathway and eventually to be excreted as taurine and sulfate.

This exacerbates the shortage of glutathione, and the oxidative stress becomes more severe.

The oxidative stress causes cysteine to shift to its oxidized form, cystine.

The enzyme cystathionine gamma lyase catalyzes a secondary reaction on cystine which passes through hydrogen sulfide to thiosulfate.

Depletion of glutathione prevents conversion of thiosulfate to sulfate, and thiosulfate is excreted in the urine.

The person is stuck with a vicious circle that keeps the methylation and folate cycles blocked, and keeps glutathione low.

This produces all the symptoms of chronic fatigue syndrome (or autism, if the person develops this when very young, before development of the brain is completed).

The CFS (or autism) continues in a genetically susceptible person, even if the Bb are knocked out, because the vicious circle mechanism maintains it.

Genetics comes into the picture in the form of polymorphisms that the person has inherited in genes that code for several of the enzymes involved in this pathogenesis mechanism. It isn't just a single polymorphism that causes the susceptibilty to this mechanism, but polymorphisms in several of the involved enzymes. Basically, this collection of polymorphisms makes it easier for this mechanism to take place, dropping the person into a chronic vicious circle that keeps them ill.

Rich



Edited by BryanRosner (06/22/08 04:04 AM)

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#3681 - 06/22/08 10:06 AM Re: The Lyme Disease End Game [Re: Rich_Van_K]
pawelw
New Researcher


Registered: 06/22/08
Posts: 3
Loc: Poland
Thanks for interesting info and discussion. The methylation block treatment sounds promising.

I think however that simplifying Lyme disease treatment to steps like: (1) Knock off borrelia (99% of it or so) by any antibiotic treatment and (2) fix methylation block is BIG oversimplification.

The idea of supporting the immune system is of course always valid. There is also an evidence that is not only immune system fighting borrelia but borrelia actually using immune system of the host to dissolve collagen tissues (in joints, skin, brain, heart etc. causing symptoms). This is done by borrelia by initiating inflammation - so it is often mistaken as auto-immune conditions.

This seems to be confirmed by many studies and taken together by Stephen Buhner in Healing Lyme book - which is in my opinion probably the best description and research analysis of what actually borrelia does in the body.

So now the catch, if you still have inflammation and symptoms - is it just an upregulated immune system after the war is over or is it still upregulation caused by still active infection???

Pawel

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#3682 - 06/22/08 02:17 PM Re: The Lyme Disease End Game [Re: BryanRosner]
BryanRosner Administrator
Forum Veteran


Registered: 11/08/06
Posts: 268
Loc: Mountains of Northern CA
Quote:
So now the catch, if you still have inflammation and symptoms - is it just an upregulated immune system after the war is over or is it still upregulation caused by still active infection???

There are still active bacteria, so antibacterial treatments should not be abandoned. However, since the last of the active bacteria may be unreachable, one must approach the situation as if the goal is to stop the upregulation regardless of the presence of the bacteria.
_________________________
Bryan Rosner

DISCLAIMER: Bryan Rosner is a journalist, not a healthcare provider or doctor.

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#3684 - 06/22/08 03:39 PM Re: The Lyme Disease End Game [Re: pawelw]
Rich_Van_K
New Researcher


Registered: 06/21/08
Posts: 8
Hi, Pawel.

Thank you for your comments.

I have not read Buhner's book, and I will order a copy this evening. Thank you for recommending it.

I agree that there is a lot more going on that what I have described. The main point that I want to get across though, is that I believe that the methylation cycle block and glutathione depletion are the core issues in the biochemistry of CFS and autism, and that I think it is likely that in long-term Lyme disease this same vicious circle is activated.

With regard to the immune system, in CFS what appears to happen is that part of the immune reponse is disabled, in particular the cell-mediated immune response. This is the immune response that is particularly important for combating viral, intracellular bacterial, and fungal infections. At the same time, because the hypothalamus-pituitary-adrenal (HPA) axis is blunted, the cortisol secretion drops, and this allows inflammation to proliferate.

When Lyme disease acts as a route into CFS or autism, as I believe it does in people who are genomically susceptible because of the set of polymorphisms they have inherited, the changes in the immune system that occur because of glutathione depletion and the methylation cycle block actually "play into the hands of" the Borrelia, because Borrelia has the capability to become intracellular, and thus escape effective attack by the immune system in the absence of a competent cell-mediated immune response. Furthermore, the collapse of the HPA axis facilitates the inflammation process you described.

So what I'm saying is that the development of CFS or autism is helpful to the Borrelia. I agree with Bryan that efforts must be made to combat the Borrelia directly, but unless the immune system is brought back to normal operation it will not be able to "pick up the ball," and the Borrelia will just repropagate after the direct efforts against it are terminated. I'm suggesting that in order to restore the integrity of the immune system, the methylation cycle block must be lifted, and that's where adding in the methylation cycle block treatment could play an important role in bringing about Bryan's "last 10% of recovery," in my opinion.

Rich

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#3686 - 06/22/08 05:20 PM Re: The Lyme Disease End Game [Re: Rich_Van_K]
Connie
Spirochete Hunter


Registered: 03/06/08
Posts: 58
Hi All!

It's late and I'm sleepy and don't have a lot of mental acuity to respond at length here, but I just wanted to mention that I agree with Pawel that the solution to "post-Lyme syndrome" or whatever you want to call CFS and any remaining symptoms post-Lyme, is a complicated one and the result of different contributing factors, depending upon the damage that borrelia has done to the body, a person's unique biochemistry, and other factors that my wee brain can't intelligently discuss in-depth. CFS is thought, in general, to be caused by multiple factors and it seems nobody has the monopoly on WHAT exactly causes it. While the methylation issue certainly is important (and thanks for the info., Rich, that is interesting), other dysfunction may be occurring in the body as a result of Lyme and which also contributes to CFS and other symptoms. I personally feel, based on the clues my own body has given me--that adrenal insufficiency can be the trigger for both CFS and Lyme (and Dr. Poesnecker pioneered a theory that CFS is caused by adrenal insufficiency), and that it can also be the reason why a person has CFS post-Lyme. This adrenal insufficiency may also be caused by many things...(I wasn't sure Rich, if you meant to say that a "blunted HPA" is the result of inflammation...would you mind clarifying?). Also, since Lyme can go anywhere and destroy just about anything in the body, I would think that any post-Lyme symptoms can be the result of any number of dysfunctions that have a cascade-like effect upon the body.

As a final note, I have learned that liver detox enzymes can also be destroyed by toxins, esp. heavy metals, and that the damage which metals do compromise detoxification ability; hence, it is an environmental problem as much as it is genetic (and if you subscribe to the theory in epigenetics that you can alter your genes through your environment then it really doesn't matter which chicken or egg came first...)

After reading all these posts, I'd like to know...for those of you who believe you have eradicated--or nearly eradicated Lyme, did you do tests to confirm this? What kinds of symptoms do you still have? Lately I have been hearing a few stories about people who feel they are "cured" of Lyme but who are yet symptomatic. This troubles me; at what stage do you assume that what is leftover in your body is a result of Lyme damage, or the critters causing inflammation? ...Or perhaps yet, emotional trauma or another undetected infection? I haven't read Dr. Singleton's book--does he address this?


Okay, this is already longer than I meant for it to be (sorry for the soapbox!)

Thanks,

Connie
http://www.lymebytes.blogspot.com
_________________________
Connie Strasheim
Author, "The Lyme Disease Survival Guide"
http://www.lymebytes.blogspot.com

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#3687 - 06/22/08 06:46 PM Re: The Lyme Disease End Game [Re: Connie]
Rich_Van_K
New Researcher


Registered: 06/21/08
Posts: 8
Hi, Connie.

I appreciate your comments.

I certainly don't want to minimize the complexity of these disorders. There is indeed a lot going on. My effort over the past twelve years has been directed toward finding the root issues, underneath all the complexity. If we can correct root causes, I think we have a good chance to achieve cures.

With regard to the causes of CFS, in my hypothesis the causes are a combination of an inherited genomic predisposition, together with a variety of factors, different in each case, but having in common that they all place demands on glutathione or cause it to become depleted. These factors include physical, chemical, biological, and psychological/emotional factors, and the reason that they combine together is that the body's nonspecific stress response (secreting cortisol, epinephrine and norepinephrine) is a result of the entire combination of stressors to which the body is being subjected. I think this variety of causal factors agrees well with the published risk factors for CFS, the experiences reported by many individual people who have CFS, and the known behavior of the body's nonspecific stress response system. The genomic involvement is supported by published twin studies, familial studies, and measurement of polymorphism frequencies.

With regard to the blunting of the HPA axis in CFS, in my hypothesis this results from glutathione depletion in the pituitary as part of the systemic glutathione depletion that I believe is causal for CFS. When the glutathione level drops in the pituitary, the proper synthesis and routing of proopiomelanocortin (POMC) no longer occurs. POMC is the parent molecule of ACTH, which is what the pituitary uses to regulate the secretion of cortisol by the adrenals. It is supposed to be released in a controlled fashion to produce the proper diurnal variation of cortisol secretion, and also to provide proper response to stressors on a continuous basis. When glutahione is depleted, the signalling hook on the POMC molecule is not properly formed, and this causes the molecule to be routed to the nonregulated secretory pathway rather than the regulated secretory pathway. The result is blunting or dysregulation of the HPA axis. The HPA axis problem in CFS is, I believe, thus a downstream effect of glutathione depletion. This explanation is based on work that has been published in the peer-reviewed medical literature, and I think it agrees well with observations. I realize that the late Dr. Poesnecker called this adrenal insufficiency, but in most cases of CFS, the adrenals themselves are not at fault, as shown by normal results on the cortrosyn test. The problem is higher up in the HPA axis, at the pituitary, in my opinion. Some of Dr. Poesnecker's treatments were actually working higher up in the HPA axis, in my opinion. His successors are still using Seriphos, and it is likely that it is one of the treatments that helps higher up.

With regard to the heavy metals in CFS, according to my hypothesis they build up because of glutathione depletion, since glutathione is normally responsible for conjugating them and carrying them out of the body. That logic seems straightforward. It's certainly true that when they build up, they impact the biochemistry in many ways. However, it has been found in both CFS and autism, using urine toxic metals testing, that treatment to lift the methylation cycle block and to restore glutathione levels increases the excretion of heavy metals and also produces a collection of symptoms that can be attributed to detox, suggesting that the detox system returns to normal operation under this treatment.

It is certainly true that there are epigenetic effects in these disorders, and I think they are one of the main reasons that the recovery from autism and CFS under treatment to lift the methylation cycle block takes such a long time. The gene expression has to adapt back to a healthy state from the adaptation it made as a result of these disorders.

Best regards,

Rich

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#3688 - 06/23/08 01:16 AM Re: The Lyme Disease End Game [Re: Rich_Van_K]
pawelw
New Researcher


Registered: 06/22/08
Posts: 3
Loc: Poland
Connie, Bryan and Rich,

Thank you for your valuable comments.

I agree with Connie and also wonder how someone claims 90% "cured" and still have symptoms? Tests are in my opinion useless (at least so far) in assessing that. Bacterial load does not always correspond to symptoms or well-being. In addition to that we have so called "coinfections", more and more of them and new tests trying to catch up. If you find what G. Ederlein (the father of Isopathy) discovered wise, you know that this route leads nowhere - there will be more, newly mutated pathogens and their forms/variants than we will be able to catch by tests.
I thik one can only considered “healed” if one does not have symptoms and stays in healthy state without support of any particular treatment. Stays also in an event of stress which is live guaranteed:-)

Focusing on kicking down this or that bacteria as primary approach can be successful only if certain conditions are met. The first and most important condition is overall health of immune (meaning hormonal, detox, psychological and other) system. It is necessary to assume healthy operation after antimicrobial therapy is finished.

Unfortunatelly, if condition is chronic the above does not hold any more. It is then necessary to support the body to regenerate important functions, if possible in parallel to antimicrobial therapy. For that herbal therapies, methylation cycle block therapy presented by Rich and other similar approaches are far superior to purely antimicrobial approaches like abx (it is still unknown to me if rife therapy has effects beyond antimicrobial).

At that point I creatively disagree with Bryan, who puts herbs in the same box of "antimicrobial" as abx. Herbs go far wider and beyond simple "killing" action of abx. For one example Polygonum Cuspidatum is able (as one of many actions) to shut down inflammatory pathways used by borrelia to initiate inflammation and collagen tissue break-down. So bacteria is still in the body but cannot do more damages and body is allowed to heal. This is not "frontal attack concept" but still can be very if not more effective (my personal experience confirms that:). In that light, I take methylation cycle block therapy as similar, valuable approach.

Best regards,
Pawel

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#3691 - 06/23/08 04:27 AM Re: The Lyme Disease End Game [Re: Rich_Van_K]
Connie
Spirochete Hunter


Registered: 03/06/08
Posts: 58
Rich,

Thank you for your comprehensive reply. I am curious, has your hypothesis been tested at length in those with CFS and post-Lyme CFS?

Early on in my treatment, I used to get glutathione fast pushes once a week (10 cc, I think) and in-between I would give myself intramuscular injections. I did not notice any substantial change in my symptoms--(I was doing the Detoxx protocol), but I also did not use the other things you mention above, ie, B-12, in conjunction.

I would be interested in hearing about any positive results as a result of your theory (are you involved professionally in the medical field?).

Thanks,

Connie
_________________________
Connie Strasheim
Author, "The Lyme Disease Survival Guide"
http://www.lymebytes.blogspot.com

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#3697 - 06/23/08 12:38 PM Re: The Lyme Disease End Game [Re: Connie]
Rich_Van_K
New Researcher


Registered: 06/21/08
Posts: 8
Hi, Connie.

You are certainly welcome!

Concerning testing of my hypothesis, you can find the details about that in the two files I posted to the files section of the Lyme-and-rife Yahoo group. Just look for the ones from rvankonynen.

Briefly, the so-called "simplified treatment approach" has been out for about a year and a half now. The first person with CFS started on it Feb. 19, 2007. Since then, I estimate that several hundred with CFS have started it, worldwide. Most are reporting benefits.

There are about ten physicians whom I am aware of who are currently using this treatment or something similar to it for their CFS patients, and the ones who have sent me reports are saying that about two-thirds are showing ongoing improvement.

Currently, a more structured research study of this treatment is underway in the practice of Dr. Neil Nathan in Springfield, MO. There are 30 women in the study, and each will be treated for six months, with some testing at the beginning and at the end, and careful recording of symptoms in logs. This study is not randomized, blinded or placebo-controlled. Early results are that about 70% are showing a positive response. So we have yet to do an orthodox clinical trial, but the pilot study results are looking very good at this point.

Individual people on the treatment have been reporting in to the ImmuneSupport CFS discussion board and the Yahoo cfs-yasko group.

With regard to post-Lyme CFS, we don't have much experience with that yet. I think there are a small number of women in the Nathan study who are positive for Lyme, so we should get some information about this when we see their responses to the treatment. I have just begun to suspect that Lyme is one pathway into CFS for those who are genetically susceptible, so I have not been encouraging people who are Lyme-positive to try this treatment in the past. Now I think it could help them, too, as part of their treatment program, but I suspect not as their entire treatment.

My experience with direct efforts to boost glutathione has been that it helps some people with CFS temporarily, and some cannot tolerate it, but it does not seem to raise glutathione levels to normal on a permanent basis, and it is not a cure.

The big breakthrough for me was in late 2004 when Jill James showed in autism that there is also glutathione depletion, just as there is in CFS, but that in autism it is associated with a partial block in the methylation cycle, which is located earlier in the sulfur metabolism. I realized that this could be the thing holding down glutathione in CFS also, by a vicious circle mechanism, and subsequent study and testing seems to bear that out.

If you want to read reports directly from people on the treatment, I suggest that you join the two groups I mentioned above. Some of the results reported there are quite positive.

I should note that this treatment also produces detox and die-off symptoms, and there have been a small fraction of people who have had adverse effects, which is why I say that people need to be monitored by a physician while on this treatment, even though it is all food supplements, because some people have needed assistance. This is discussed in the files I posted to the Lyme-and-rife group's files section.

In the cfs-yasko group, there are some people doing the simplified treatment, and some doing the full Yasko treatment, which is much more complicated and also somewhat expensive, because it includes a lot of supplements and a lot of lab testing. There is quite a bit of "mixing and matching" that goes on in the treatment of CFS by individuals, just as in Lyme, so some people are doing only part of the simplified treatment approach, some have added things to it, and some are doing the full Yasko treatment. But all of these appraoches are aimed at lifting the methylation cycle block.

I am working professionally in the healthcare field now, as an unpaid researcher, and as a part-time paid consultant, analyzing individual cases. I have no formal training in the biomedical field. My Ph.D. is in Engineering--Applied Science. I am retired from the University of California. I'm an old guy--66!. I started studying CFS 12 years ago in order to help a friend who developed a case of it. I thought it would be easier to figure out than it has turned out to be! But I got hooked on the science and also came to "e-know" a lot of people with CFS in the internet groups, and I wanted to help them, so I just didn't want to give up. Thankfully, especially because of the work done in autism, I think we now have a good shot at curing people who have CFS.

I'm now trying to see if the hypothesis I've developed will apply, at least partly, to chronic Lyme disease, too, and I suspect that it will. When I read what Bryan said about the last 10% of recovery, it seemed to me that fixing the methylation cycle block might be part of that, so I started waving a flag over here!

Take care, and I wish you the best.

Rich

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