Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Oxalates And Nightshades


  • Please log in to reply

433 replies to this topic

#136 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 27 September 2007 - 12:10 PM

Judy--

It'll be really interesting to hear what she has to say :)
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

Celiac.com Sponsor:

#137 Judyin Philly

 
Judyin Philly

    Moved to SO CA in November 2010

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,626 posts
 

Posted 27 September 2007 - 12:21 PM

woops double post
  • 0
Judy in Southern CA

#138 Judyin Philly

 
Judyin Philly

    Moved to SO CA in November 2010

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,626 posts
 

Posted 27 September 2007 - 12:23 PM

FLORENCE.........Here's a question:What do you think about us all sharing the list of supplements we're taking? Maybe we would learn something from each other's regimens?

I'LL BE BACK TO PUT A LIST HERE.
J
  • 0
Judy in Southern CA

#139 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 27 September 2007 - 01:35 PM

FLORENCE WROTE......Here's a question:

What do you think about us all sharing the list of supplements we're taking? Maybe we would learn something from each other's regimens?

The only suppliment I take is the Caltrate 600--3 times a day, with meals.

I haven't been able to tolerate any other suppliments.
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#140 Rachel--24

 
Rachel--24

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 9,323 posts
 

Posted 27 September 2007 - 07:10 PM

I've been reading all kinds of stuff about fungi and oxalates...seems like several species are oxalate producing but especially Aspergillus.

Oxalate crystals found in lung tissue or sinuses are a diagnostic clue to Aspergillus infection.

Oxalic Acid (A Mycotoxin) Found In Breast Cancer Lesions

Going et al. (1990) found that weddellite (calcium oxalate) crystals are present in calcifications found in the breast tissue of patients with breast cancer. Calcium oxalate crystals are formed when calcium binds with oxalic acid. In human and animal systems, this is a protective process which considerably reduces the severe toxicity of oxalic acid. Oxalic acid is a powerful corrosive agent and oxalate salts are widely used for their cleaning and bleaching properties!

Oxalic acid happens to be a mycotoxin which can be produced by a number of different fungal species. Some fungi produce such large amounts of oxalic acid that they are used for commercial production of the chemical.

Aspergillus niger fungal infection in human lungs produces large amounts of oxalic acid which is extremely toxic to the blood vessels and which may cause fatal pulmonary hemorrhages. Consequently, oxalic acid (calcium oxalate crystals) in the sputum or lung specimens of patients is also an indication of an Aspergillus infection of the lung. These calcium oxalate crystals are the same as the calcium oxalate found in breast cancers.

The presence of oxalates in the breast is indicative of the presence of fungi interwoven within the stages of breast cancer development. Since humans do not make oxalic acid themselves, this is an appropriate conclusion.


All of this soooo much explains my symptoms as well as my severe sensitivity to molds/yeasts/mycotoxins. I did not know that oxalic acid was a mycotoxin!!! :o

Many fungi, belonging to Ascomycetes, Basidiomycetes and Zygomycetes, a few Lichens and slime mold genera Perichaena and Dianema produce calcium oxalate crystals during some phase of their life cycle.

Accumulation of oxalate by fungi, particularly in Aspergillus, Penicillium and Mucor species is of such an order that these fungi could be used for industrial fermentation for oxalate.


Other sources of dietary oxalates include Aspergillus niger and A. flavus; these fungi produce oxalates as a by-product of their metabolism and frequently contaminate feedstuffs.



The association of oxalate crystal deposition in tissue in Aspergillus niger infection is documented, mostly as a pulmonary aspergilloma. In the reported cases of sinus mycetoma the causative organisms have been either Aspergillus fumigatus or Aspergillus flavus.


  • 0
Rachel

#141 Judyin Philly

 
Judyin Philly

    Moved to SO CA in November 2010

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,626 posts
 

Posted 27 September 2007 - 07:38 PM

Rachel
this is so interesting to me as my Mother, Father, Mothers brother, Mothers cousin all had Idiopathic Pulmonary Fibrosisl My family dr found this very interesting as it ususally is not found in a cluster in a family
i have had signs of it on chest x rays.
My dr said is a fungi or mold that is East of Miss river and in the Ohio valley........where we were all raised ....................that might be related or the cause.
of course idiopathic means..........unknown origin...........or cause so ................

i'm wondering if this could be the fungi your discussing.
thanks Rachel.
j
  • 0
Judy in Southern CA

#142 Rachel--24

 
Rachel--24

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 9,323 posts
 

Posted 27 September 2007 - 07:58 PM

i'm wondering if this could be the fungi your discussing.
thanks Rachel.
j


Hmmmm...I dunno Judy. Its interesting that so many of your family members had the pulmonary fibrosis. :huh:

I did read that Aspergillus can cause that.

It seems like the Aspergillus infections occur mainly when the immune system is already weakened. In my case I was going through all that stuff with mercury when I started having the sinus symptoms.. :(

Heres some info...

Aspergillus spores are found everywhere in the environment including the air we breathe. The spores can therefore enter everyone's lungs and can also enter wounds. This is how all Aspergillus diseases are contracted, although the underlying reasons for the different types of Aspergillus diseases differ.

Invasive aspergillosis occurs almost exclusively in people with a damaged immune system. Most people's natural immunity to Aspergillus means that they easily kill Aspergillus spores that enter their body. However, if someone has a damaged immune system, (for example due to leukaemia) they lose their natural protection and may develop invasive aspergillosis.

Aspergilloma, sinus disease and ABPA often occur in people with an apparently healthy immune system. Individuals with ABPA are allergic to the Aspergillus spores that enter their lungs and they "overreact" to small numbers of Aspergillus spores that most people happily tolerate. This may happen with sinus disease as well. Normally, in sinus disease and Aspergilloma, Aspergillus becomes lodged in the lung or sinus often due to a cavity in these organs.

Occasionally individuals with a healthy immune system are infected with Aspergillus. This is rare, however exposure to very large numbers of spores can lead to severe allergic lung disease called extrinsic allergic alveolitis. The most famous example of this is Farmers Lung, where farmers are exposed to massive numbers of Aspergillus spores in silage.


  • 0
Rachel

#143 Judyin Philly

 
Judyin Philly

    Moved to SO CA in November 2010

  • Advanced Members
  • PipPipPipPipPipPip
  • 3,626 posts
 

Posted 27 September 2007 - 08:16 PM

Thanks Rachel.
I did so much research on IPF when Daddy was so sick and even some of my pulmonary Dr's who I worked with in the medical library were helping me. We kept getting the asbestos's (from the air craft industries plants where my dad and uncle worked and brought home on their clothes) and this fungi/mold from the farm areas where we lived.

my research was 12 years old tho.
maybe there is more out there now.
I still think alot of mine started with the dental extractions=======that you and i have discussed at length............. :blink:
think I'm taking this tired brain to bed.
thanks rachel.
nite.
  • 0
Judy in Southern CA

#144 Flor

 
Flor

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 159 posts
 

Posted 28 September 2007 - 06:02 AM

Research on oxalates, biotin, and fatty acids:

The below was posted by Susan Owens on the low oxalate group at Yahoo. It's in vitro research with chick liver cells, as far as I can tell. And what it shows is that oxalates inhibit liver's ability to synthesize fatty acids but INCREASE cholesterol formation AND that biotin deficiency makes this worse. I'm not sure what the last part means but I'll keep looking...

Biotin seems to be coming up a lot on this low oxalate stuff. I'm gonna go get some!

The effects of oxalate and glucose on lipogenesis by isolated hepatocytes
from normal and biotin-deficient chicks (Gallus domesticus).

Abstract:
Isolated hepatocytes synthesize fatty acids and cholesterol from lactate
and acetate with lactate being the more effective substrate. Biotin
deficiency decreased fatty acid synthesis from both substrates but
stimulated cholesterogenesis. Exposure of intact hepatocytes to oxalate
inhibited fatty acid and cholesterol synthesis from lactate, this effect
was enhanced in biotin-deficient chicks. A similar effect was not observed
when acetate was the substrate. Synthesis of fatty acids from lactate and
acetate was stimulated by glucose, biotin deficiency increased this
response. Cholesterogenesis was reduced in control but not biotin-deficient
chicks.

Publication Types:
* In Vitro
  • 0

#145 Flor

 
Flor

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 159 posts
 

Posted 28 September 2007 - 06:04 AM

Sorry, Susan has this comment about that article:

Listmates,

Gluconeogenesis is making new glucose out of other things, usually amino
acids, but here, lactate. There is a lot of research looking at how biotin
activity within carboxylases is hampered by oxalate and the thought is that
the big part of this impairment is in pyruvate carboxylase. Something
about the results here suggested this enzyme was NOT the big deal. At any
rate, restoring biotin levels kept the oxalate from being so damaging.

Susan

I wonder if biotin could be like calcium in helping to prevent oxalate damage?
  • 0

#146 bluejeangirl

 
bluejeangirl

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 480 posts
 

Posted 28 September 2007 - 11:31 AM

From what I have learned, oxalates are normally digested by a good bacterium in our intestines called oxac. formigenes, and this good bacteria can be destroyed by antibiotics, perhaps vaccines, or long term intestinal illness. Once the bacteria is gone, you cannot digest oxalates normally and they cause a condition called enteric hyperoxalosis, which is a known condition by urologists and some of the more learned gastroenterologists. The oxalates form crystals which are attracted to tissue that has been damaged by injury or illness. Organs, muscles, even bone. Bacteria, such as lyme, or candida and metals bind with the oxalates

.


I'm very interested in trying this diet. The more I'm reading about and all your posts makes me believe this could help me. Like many of you going gluten free helped but I know there's along road ahead to get to where I feel good. To summarize my problems I could say it started with candida yeast shortly after the birth of my second son in 84. But I think it started way before that with mercury poisoning, just as you Rachel. I have alot of fillings and wanted to get them removed but never did. Twice I've had a filled tooth crack and them had them crowned. Which I don't think was done proper.

Anyway yeah the candida was real hard to get rid of took a year of strict dieting and lots of nistatin. I did ok for the next 15 years but I could tell I was getting sicker and sicker. I have alot of jaw and upper neck pain. Joint pain expecially on rainy days along with the brain fog and forgetfullness. The pain seems to be more in the ligements.
Also CFS which makes it hard to get a job. I haven't worked for 8 years.

Anyway I want to thank Patti for starting this thread and Rachel for your input with your research, you always help me out. I'm going to eat more then I should of the vegetables on the limited list because I won't be eating white rice or kellogs corn flakes. I can't eat cabbage or cucumbers either ..... to hard on my system. I get constipatied if I don't eat enough vegetable so I think its wise.

I'm going to just go grainless so I'm alittle worried about losing weight which I don't want to do. I might experiment wih coconut flour. If anyone has made things with it I would love recipes and tips. Also it says acorn squash is good so Im wondering about other squashes like butternut and hubbard squash. I looked on one list and it says zucchinni is bad and the list posted here says zucchinni is good, but summer squash is bad which is what I thought zucchinni was or was a part of that class? Any thouchts? How about patty pan squash?

Anyway I have to run but wanted to introduce myself and hopefully I'll be making some progress reports.

Gail
  • 0
Gluten Free since Jan. 06
Gluten intolerant. DQ 0301 DQ 0602
Lactose intolerant.

#147 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 28 September 2007 - 12:20 PM

Hi Gail,

How nice to "see" you again! The list I've been using--

http://patienteducat...OxalateDiet.pdf

says that zucchini and summer squashes are both high oxalate.

I don't know for sure, but I've been eating all the winter squashes--acorn, butternet, etc. Pattypan should be fine, too, I would think.

Yes, I appreciate all of Rachel's research, too. :)

I'm excited that you're giving this a try and I'll be looking forward to your progress reports. It sounds quite challenging with what you have to leave out, but I'm sure you're very used to substituting by now. ;)
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

#148 Flor

 
Flor

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 159 posts
 

Posted 28 September 2007 - 12:56 PM

CFS, glutathione, methylation and more parallels between "us" and folks with autism:

I just came across this paper on the "sulfurstories" yahoo group (related to the trying-low-oxalate-diet group and also moderated by Susan Owens):

http://health.groups...rstories/files/

It's a 45 page research paper, so I won't paste it in here. I haven't read it all, but it looks very readable and addresses the role of glutathione depletion in possibly causing CFS, among other things.

If you want the paper and don't want to join the group, notify me and I'll email it as a word attachment to you.

As a number of folks have mentioned, glutathione seems to be at the center of a lot of these depletion/auto-immune illnesses.

I don't know if studies have been done to see how many people overlap gluten intolerance/celiac with CFS, rheumatoid arthritis, and fibromyalgia, but I bet it's a lot. I think the mechanisms of depletion may be all related, with combo of heriditary and environmental stressors triggering events. And autism shows up through all this stuff as well.
  • 0

#149 Flor

 
Flor

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 159 posts
 

Posted 28 September 2007 - 01:14 PM

Sorry, add-on post here -- I realized the same guy who did the research paper I mention above wrote a much shorter (2 page) recommendation for treatment of CFS based on glutathione issue.

Please tell me if it's not kosher to post it here and I won't do it again. Since CFS and glutathione and methylation have come up several times and it seems so related, I thought I'd put it here.

Side question: is there an ongoing CFS sub-group on this website? I'm going to go look over at Yahoo too because it seems like we might have stuff to learn from those folks.


January 25, 2007

Suggestions for Treatment of Chronic Fatigue Syndrome (CFS) based on the Glutathione Depletion—Methylation Cycle Block Hypothesis for the Pathogenesis of CFS

Richard A. Van Konynenburg, Ph.D.


I presented the Glutathione Depletion—Methylation Cycle Block Hypothesis for the pathogenesis of CFS in a poster paper at the 8th international conference of the International Association for Chronic Fatigue Syndrome in Ft. Lauderdale, Florida, on January 10-14, 2007. This poster paper is available on the internet at the following url: http://phoenix-cfs.o...Konynenburg.htm
Since then I have received requests from some clinicians for a description of a treatment approach based on this hypothesis.

I am a researcher, not a clinician, and I am well aware that it is one thing to believe that one understands the pathogenesis of a disorder, but quite another to know how to treat patients who suffer from this disorder. Nevertheless, I will respond to these requests to the degree I am able. What I can say in this regard will be based on what I perceive are the most successful treatment approaches currently used in autism, which I believe shares the same basic pathogenetic mechanism with CFS, and also on limited experience in communicating by internet with the small number of CFS patients so far who have elected to try these approaches. Of course, I am counting on clinicians to apply their judgment to what I write here, based on their expertise and clinical experience, since responsibility for treatment falls to them.

I suspect that clinicians would like for me to supply a simple, straightforward approach that would be uniformly applicable to all CFS patients and thus readily useable in a typical busy practice in today’s medical climate, in which it is practicable to devote only a relatively short time to each individual patient. Believe me, I understand this, and I would very much like to be able to give such a response.

Now comes the “however.” At this point it appears that it will actually be necessary in most cases to devote considerable time to each patient, and to tailor the treatment program to the individual patient. In my opinion, the reasons for this do not appear now to be lack of understanding of the pathogenesis, but to be inherent in the genetic individuality of the patients as well as in the variety of their concomitant medical issues and, for many, in their general state of debility. I now see this need for individual treatment and significant time investment in each patient as the most significant problem in the practicable delivery of treatment to these patients. Hopefully this will become clearer as I explain further, and hopefully also, this problem can be ameliorated to some degree in the future as more experience is gained.

If you have read my pathogenesis paper, you know that I now believe that the fundamental biochemical issue in at least a large subset of the CFS patients is that the methylation cycle is blocked. Therefore, I think that the main goal of treatment must be to remove this block and to get the methylation cycle back into normal operation. I believe that it is also true that glutathione depletion is present in these patients and is directly responsible for many of the features of CFS, as I described in my recent poster paper, but I have found in interacting with clinicians as well as with many patients on the CFS internet lists, that it is usually not possible to normalize the glutathione levels on a permanent basis by direct approaches of glutathione augmentation. Instead, it appears that the methylation cycle block must be corrected first, to break the vicious circle that is holding down the glutathione levels. In addition to this, some patients, because of particular genetic polymorphisms, cannot tolerate supplementation with glutathione or other substances intended to help them directly to build glutathione. One clinician estimated to me that this group amounts to about one-third of the patients.

Based on what is being done in autism by the Defeat Autism Now! (DAN!) researchers and clinicians and independently by Dr. Amy Yasko, N.D., Ph.D., I am going to suggest two treatment approaches for CFS. The first is a simplified approach which may be applicable to patients who have not been ill for an extended period, and who are not very debilitated. Use of this simplified approach would be based on the hope that the patient does not have certain genetic polymorphisms, which would not be known in this simplified approach. If the patient does in fact have these polymorphisms, the simplified approach will not be successful, and then you will have to move on to the more complex treatment. This simpler treatment approach is based partly on the treatment that was used by Dr. S. Jill James, Ph.D., et al. in the study that found the connection between the methylation cycle block and glutathione depletion in autism (This was Ref. 2 in my pathogenesis paper), but it makes use of supplements that are part of Dr. Amy Yasko’s treatment program. The second treatment approach is much more involved and is based on Dr. Yasko’s complete autism treatment. I currently believe that the second approach is the type of treatment that will be necessary also for most CFS patients, and certainly those of longer standing or greater debility, as well as those having certain genetic polymorphisms. However, I am including the simpler approach in an effort to match the practical demands of current medical practice, to the degree I understand them.

In the simplified treatment approach, potentially applicable to patients who have not been ill for an extended period, who are not very debilitated, and who will initially be assumed not to have certain genetic polymorphisms, one would proceed directly toward the goal of restarting the methylation cycle, together with some general nutritional support. If this treatment is tolerated and is efficacious in a particular case, I think it could actually be relatively straightforward. I think it should be borne in mind, though, that if the simplified approach is not effective for a particular patient, there is the risk that trying it could discourage the patient before she or he reaches the second option. So I think it would be proper and wise to discuss this issue with the patient up front, and to apply considerable clinical judgment as to whether the simplified approach should be tried on a particular patient.

The simplified approach would involve giving the following oral supplements daily, all of which are available from Dr. Yasko’s supplement website at http://www.holisticheal.com:

¼ tablet (200 micrograms) Folapro (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

¼ tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, aka folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor)

(up to) 2 tablets (It’s best to start with ¼ tablet and work up as tolerated) Complete vitamin and ultra-antioxidant from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, some trimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

1 softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids)

1 sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

1 capsule SAMe (200 mg S-adenosylmethionine)

1/3 dropper, 2X/day Methylation Support Nutriswitch Formula (This is an RNA mixture designed to help the methylation cycle. It is not essential, but is reported to be helpful.)

Note that I have specified hydroxocobalamin rather than methylcobalamin as the main supplemental form of vitamin B12. I’ve done this to accommodate patients who may have downregulating polymorphisms in their COMT (catechol-O-methyltransferase) enzyme, which many CFS patients seem to have. If they do not have these polymorphisms, methylcobalamin would be more effective, but in this simplified treatment, the patient’s polymorphisms will not be known. I am also including a small amount of SAMe, which is also a compromise, since the amount needed will again depend on COMT polymorphisms, which will not be known for this simplified treatment. The amount of B12 specified is also a compromise, since those with certain polymorphisms will benefit from a higher dosage than will those without them.

After this treatment is begun, you can expect the patient to feel worse initially, and I think it would be proper and wise to make the patient aware of this before the treatment is begun. It is necessary to determine whether this feeling is occurring because the treatment is working and the patient’s body is beginning to detox and kill viruses, or whether it is occurring because the patient does in fact have upregulation polymorphisms in their CBS (cystathionine beta synthase) enzyme, in which case you will have to move on to the more complicated complete treatment regimen. Which of these is the case can be determined by taking spot urine samples for a urine toxic metals test and a urine amino acids test from Doctor’s Data Laboratories. These can be ordered through Dr. Yasko (at http://www.testing4health.com) if you would like to receive her interpretation of the results, or they can be ordered directly from Doctor’s Data Laboratories (http://www.doctorsdata.com). If the toxic metals are elevated on the urine toxic metals test, this will indicate that the patient has begun to detox, which is desirable. If taurine and ammonia are elevated on the urine amino acids test, this will suggest that the patient does have CBS upregulation polymorphisms, in which case you will have to stop this treatment and move to the more complicated approach described below. It would be best to do this treatment for a week or two before doing the urine tests, so that meaningful results can be obtained on these tests, unless the patient cannot tolerate it. If the latter is the case, then you will have to go on to the more complicated treatment approach described below.

As I have emphasized, the simplified treatment approach may or may not be tolerated by a particular patient, and I will explain why it might not be tolerated later in this discussion.

Now I will move on to the more complicated treatment approach that I currently believe will be necessary for most of the patients. I will not supply all the details of this treatment approach in this letter, but will try to give you an overall picture of the sequence of steps involved. I recommend reading Dr. Yasko’s book “The Puzzle of Autism,” and consulting her other materials as well. These are available from http://www.amazon .com by searching on “Amy Yasko.”

Before getting into this treatment approach, I first want to discuss some important issues, and then I will discuss the treatment, step by step:

1. It is necessary to minimize the use of pharmaceuticals in treating CFS patients. There are at least two reasons for this. As you know, the use of pharmaceuticals is based on their being eliminated at certain rates by the body’s detox system, found primarily in the liver, kidneys and intestines. However, many CFS patients have polymorphisms in their detox enzymes, including CYP450 enzymes and Phase II detox enzymes. (If desired, these can be characterized by the Detoxigenomic panel offered by http://www.genovations.com). Because of these polymorphisms, many patients are genetically unable to detox pharmaceuticals at normal rates, and cannot tolerate them. In addition to this, all patients who have the glutathione depletion and methylation cycle block suffer from biochemical inhibition of their detox systems, whether they have these polymorphisms or not. Because of these two factors, CFS patients suffer from the toxic effects of pharmaceuticals. Treatment using nutritional supplements is necessary, and some herbals can be tolerated as well.

2. Because of the broad nature of the current case definition for CFS, the population defined by it is very heterogeneous. It is likely that the pathogenesis model I have presented for CFS will not fit all patients. For this reason, I recommend a relatively inexpensive glutathione measurement initially, such as the red blood cell total glutathione test offered by http://www.immuno-sci-lab.com (phone them for details) or by Mayo Laboratories. Perhaps a better test is the serum reduced glutathione test offered as part of the Comprehensive Detox Panel at http://www.gdx.net/h.../detox/reports/. If a below-normal value is found in either of these tests, I think that there is a good chance that this pathogenesis model fits the patient.

3. Different patients have different genetic polymorphisms in the enzymes and other proteins that impact the methylation cycle and the associated biochemical cycles and pathways. Some of these polymorphisms will have important impacts on the choice of specific parts of the treatment program. In using the more complicated treatment approach, it will be necessary to characterize the polymorphisms before it will be possible to make some of the decisions about selection of particular treatment aspects. The most comprehensive panel for this is Dr. Yasko’s Comprehensive Basic SNP (single nucleotide polymorphism) Panel I, available from http://www.testing4health.com. Dr. Yasko has selected the polymorphisms on this panel by correlating their presence with severity of autism symptoms and with the results of biochemical testing (mainly spot urine tests for organic acids, amino acids, and essential and toxic metals). This is a somewhat unorthodox method that jumps over the usual intermediate steps involved in studying polymorphisms, and there is not universal agreement about her results in the research community, but I think Dr. Yasko’s treatment outcomes are speaking for themselves, as can be seen from the voluntary testimonials of parents of autistic children on the parents discussion group at http://www.autismanswer.com. As a researcher, of course, I look forward to the day when these polymorphisms will be thoroughly researched and characterized, and have encouraged those involved in such work to forge ahead. The results from this genetic panel require interpretation. One can either study Dr. Yasko’s materials to gain her insights on interpreting the results in general, or order her interpretation of the particular results, which is called a Genetic Analysis Report or GAR. The GAR is a computer-generated report with some general material that applies to all the cases, and specific sections that are chosen in response to the particular genetic polymorphisms found in the individual patient. As such, the continuity of the discussion in the GAR is not what would be found in a report written from scratch for each particular patient, and it may have to be read more than once to make all the connections in one’s mind, but the material contained is specific to the particular genetic panel results, and Dr. Yasko updates the material used in generating the GARs as more is learned.

4. As I have discussed in my paper, people who have been ill for an extended period of time (many months to many years) will have accumulated significant infections and significant body burdens of toxins, because both their cell-mediated immune response and their detox system will have been dysfunctional during this time. When the methylation cycle is then restarted, both the immune system and the detox system will begin to function better. When they do, pathogens and infected cells will begin to die off at higher rates, and toxins will be mobilized. The resulting detoxification will be unpleasant, and may even be intolerable. If the patient has not been prepared in certain ways, discussed below, she or he may not be willing to continue this and may drop out of the treatment program.

5. One of the most important preparatory activities is to make sure the gastrointestinal system is operating well enough to be able to absorb nutrients, including both food and the oral supplements used in the treatment, and also well enough to be able to dispose of toxins into the stools on a regular basis. If this is not done, it is likely that the treatment will not be successful. Treatments for the G.I. system, as well as for other aspects described below, are discussed in Dr. Amy Yasko’s book. Some CFS patients have reported benefit from Xifaxan to treat deleterious bacteria in the gut. This antibiotic is not absorbed from the G.I. tract, so it does not present problems for the detox system.

6. Another very important aspect of the preparation is to deal with the overstimulation or overexcitation of the nervous system that is present in CFS. This probably results from several causes, including depletion of magnesium and in some cases depletion of taurine, low blood flow to the brain because of low cardiac output, glutathione depletion in the brain producing mitochondrial dysfunction, and dietary and other factors causing elevation of excitatory neurotransmitters and depletion of inhibitory neurotransmitters. It is important that this be dealt with because if it is not, the patient will be less able to tolerate the detox inherent in the treatment.

7. Another important step is to ensure that the patient’s nutritional status is supported. Many CFS patients are in a rather debilitated state, partly because of deficiencies of essential nutrients. They are also in a state of oxidative stress. Appropriate nutritional supplements can correct these problems at least to some degree and get the overall metabolism of the patient into a better state, so that they can better tolerate the detox part of the treatment.

8. Particular organs or systems may not be functioning well and may need extra nutritional or herbal support. Which ones will vary from one patient to another, so this part of the treatment must be tailored to the individual patient.

9. Chronic bacterial infections should be addressed. According to Dr. Yasko, females in particular appear to be prone to streptococcal infections. She also finds that aluminum appears to be associated with the bacteria, so that when the bacteria die off, aluminum is excreted. While antibiotics can be used, there are downsides to this, both in terms of difficulty in detoxing some of the antibiotics and in terms of killing beneficial intestinal flora and encouraging deleterious ones, such as Clostridia dificile. In addition, some CFS patients have experienced tendon problems from the fluoroquinolone antibiotics. Dr. Yasko prefers natural antimicrobial treatments.

10. When the methylation cycle is restored, the normal detox system is able to deal with more of the toxins. Dr. Yasko also uses low doses of oral EDTA, but not the sulfur-containing chelators (DMSA and DMPS), to help remove aluminum as well as other metals, including mercury. DMSA and DMPS are not used because they can also bind glutathione, so that if a patient who is low in glutathione receives these chelators, their glutathione status can be worsened. Also, DMSA and DMPS are rich in sulfur, and CFS patients with certain polymorphisms cannot tolerate them. She also uses some natural RNA formulas for detoxing, as well as for a number of other purposes during the treatment. These are somewhat costly, and are not required as part of the treatment, but are reported to be helpful.

11. As mentioned in item 3 above, it is important to characterize relevant polymorphisms prior to bringing up the methylation cycle operation. One of the most important aspects of this is to evaluate polymorphisms in the CBS (cystathionine beta synthase) enzyme, which is located at the entrance to the transsulfuration pathway and converts homocysteine to cystathionine. Although this is somewhat controversial within the research community, Dr. Yasko finds that certain polymorphisms cause an increase in the activity of this enzyme. The result is that there is too large a flow down the transsulfuration pathway, and somewhat counterintuitively this results in lowered production of glutathione, as well as elevated production of taurine, ammonia, sulfite and hydrogen sulfide. The last three of these substances are toxins. If a patient has CBS polymorphisms, it is necessary to deal with this aspect before restarting the methylation cycle. If this is not done, efforts to start this cycle will result in increased production of these toxins. This may explain why some patients cannot tolerate direct efforts to build glutathione using sulfur-containing substances, while others derive some benefit from this. Dealing with this CBS upregulation situation can take a month or longer.

12. Only after all these issues have been addressed is the patient ready to start supplementing with larger amounts of the folates and cobalamins to begin major restoration of operation of the methylation cycle.

13. As you can see from the diagram in my pathogenesis paper, there are two possible pathways from homocysteine to methionine. One involves the enzyme methionine synthase, which requires methylcobalamin and is linked to the folate cycle as well, and the other involves the enzyme betaine homocysteine methionine transferase (BHMT), and requires trimethylglycine or one of the phospholipids (phosphatidyl-serine, -choline, or -ethanolamine). Ultimately, it is important to get the methionine synthase pathway back into operation, but in Dr. Yasko’s practice it has been found that it is easier to start up the BHMT pathway first. I think the reason is that S-adenosylmethionine (SAMe) interacts with methionine synthase, and by first starting up the BHMT pathway, one ensures that there is enough SAMe to start up the methionine synthase pathway.

14. As these steps are taken, the immune system and the detox system will start to function at higher levels, and die-off and detox will begin. These processes are monitored using periodic spot urine testing, and decisions about when to proceed to the next step in the treatment program are based on this urine testing.

15. Viral infections are dealt with naturally as the immune system recovers, though Valtrex is used in some cases. As the viruses die off, it is observed that heavy metal excretion increases. Heavy metal excretion is tracked using periodic spot urine tests and is plotted as a function of time to determine the progress.

16. When appropriate indications are seen in the urine testing, the BHMT pathway is slowed using dimethylglycine, which is a product of the BHMT reaction, and thus exerts product inhibition on it. This shunts the flow through the parallel methionine synthase pathway. This has the effect of bringing up the folate cycle, which is linked to it, and also bringing up the biopterin cycle, which is linked to the folate cycle. The folate cycle is needed to make new RNA and DNA to proliferate new cells, such as T cells in cell-mediated immunity. The biopterin cycle is necessary for the synthesis of serotonin and dopamine as well as for the operation of the nitric oxide synthases. Some patients benefit from direct supplementation of tetrahydrobiopterin, often in very small amounts.

17. The treatments up to this point should resolve most of the symptoms of CFS. The last step is to support remyelination, which has been dysfunctional during the time when the methylation cycle was blocked, because methylation is necessary to synthesize myelin basic protein. This should improve the operation of the nervous system.

That is a rough outline of the treatment process, and again, I refer you to Dr. Yasko’s materials for the details.

I’m sorry that this treatment approach is not simple, quick, easy and inexpensive, but unfortunately, I think this rather complex process is what is required, for the reasons I’ve given. I hope this is helpful, and I would very much appreciate it if you decide to try this treatment approach, that you will keep me informed of how it works out for your patients. If I can answer questions that come up, please let me know.

Rich Van Konynenburg
  • 0

#150 jerseyangel

 
jerseyangel

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 20,939 posts
 

Posted 28 September 2007 - 01:33 PM

Florence,

We don't have a CFS forum--and I don't recall a thread, either.

Thanks for posting that--it was very interesting.
  • 0
Patti


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev




0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: