posted
Hi. I'm wondering if anyone has had methylation panels done, what it cost and how the results may have affected their treatment.
My doctor thinks I'm having detox problems, which certainly might be happening--I've gotten wretchedly sick on abx (I still have no idea what a 'reasonable' herx is).
But the panels seem like they are very expensive, and I wonder what the practical implications are.
thanks.
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TerryK
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Yes, I've had the tests done. The cost for me was $625 plus shipping. None of it was covered by insurance.
Your doctor may be able to run some SNP's through your insurance company rather than having the full testing but you will probably want the full testing.
With certain blocks, one can have a problem getting rid of viruses, parasites and bacterial infections and some mutations can severely impede detoxification but there can be many other areas affected as well.
One can use special supplements to get around these blocks. Dr. Yaskow (a doctor who pioneered nutrigenomic treatment) states that if you have these defects, you must treat them, otherwise it's like having diabetes and not treating it.
If you have certain genetic mutations in this pathway, you might need to avoid sulphur causing supplements and food as they can potentially make you sicker. You can also have a problem getting rid of ammonia. Coupled with lyme, this can lead to elevated levels of ammonia which may cause more brain fog and other symptoms.
here is the yahoo group for methylation cycle issues. This is mostly adults, some with lyme disease, some who are diagnosed with Chronic Fatigue Syndrome. You can ask questions there. http://health.groups.yahoo.com/group/CFS_Yasko/messages
One of my biggest improvements with the methylation treatment has been in the sleep area. Taking the active form of folate increased the amount of time that I can stay asleep. I've had some nights of 7 1/2 hours and up without waking up. Almost unheard of for me for many decades. My sister has had similar results.
It's late so I hope this message makes sense. I'm off to bed.
Terry
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posted
Hi - I have trouble detoxing too, and just had a bloodtest done to test the liver's genetic ability to detox. It's called the detoxigenomic test. I posted recently about it.
You can do a search for "fancy liver enzymes test" and read the liver detox discussion.
Very briefly, there are two phases to liver detox. Phase one has eight enzymes, and phase two has about ten pathways, of which the methylation one is a huge one.
The detoxigenomic test tests for four of the phase two pathways, including the methylation one.
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Rianna
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quote:Originally posted by Robin123: It's called the detoxigenomic test. I posted recently about it. The detoxigenomic test tests for four of the phase two pathways, including the methylation one.
I agree with Robin - The detoxigenomic test is an Excellent test and I have just had it run with the Genelex genetic drug reaction panel to see what drugs you can and can not take.
I think the detoxigenomic test is an excellent starting point and covers everything about detox and I believe its very reasonably priced in the states.
TerryK
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The detoxigenomic test looks like it has only one of the methylation cycle SNP's that are done with Yasko's methylation panel. Be sure to ask your doctor which test he wants done.
You don't need a doctor prescription for the Yasko test but you probably do for the detoxigenomic test.
I'd be interested to know which test your doctor is thinking would be most helpful.
Terry
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CD57
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I didn't have this test but a doc I recently consulted with suggested than rather than running the expensive test, just do a modified version of the protocol. So I'm taking B vitamins, a good multi, and phosphatidylserine to help the cell walls become more permeable. He said to give it a month to notice more energy and clarity. If I didn't notice anything, I either didn't need it or it wasn't working and we'd find out why. You could try this to see if you notice anything.
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TerryK
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CD - you must be on the simplified protocol?
It is more than a good multi and B vitamins. The B vitamins include intrinsic factor and the active form of folic acid and B12. You must limit other forms of supplemental folic acid because they will compete with the active form. Many with the methylation cycle issues have trouble with folic acid and the activated form is a huge help and a big part of the protocol.
The multi-vitamin is designed specifically for those with methylation cycle issues.
IF you are one that has a CBS upregulation (I do) or a SUOX mutation, the simplified protocol *could* make you sicker. This is all explained in some of the links that I gave in my first post. If you have these issues with sulfur and ammonia you must drain excess sulfur and ammonia before opening your methylation cycle.
Terry
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posted
Terry - the doc did say the Yasko test was more complete - something like checking for 20 methylation enzymes? That's just my memory of what he said.
The Yasko test is $1100. The detoxigenomic test is $400.
He said the detoxigenomic one tests for the whole methylation "family" of enzymes and was enough to indicate to him whether I was having problems or not.
Don't know what the medical opinion is about needing to have the more specific Yasko one done.
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CD57
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Terry yes it's the simplified protocol.
I'm to look for improvements, if there are any, keep going. If not, we'll figure out next steps, what to do.
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posted
I've been reading the Yasko Yahoo group since the beginning (on and off). I've tried reading her website a few times too. The whole thing is just so complicated, the parameters seem awfully liquid, and I don't see a lot of CFS people getting much better.
What I do see is a LOT of detox reactions. Maybe that's good, maybe not -- I have no idea. She does have a couple of compelling videos out there, however.
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TerryK
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I only saw one of the SNP's that is included in the Yasko test - the COMT - that one is associated with Chronic Fatigue Syndrome, ADD, bi-polar - and some other things. I have double mutations with that one and it is associated with a problem in degrading dopamine. Too many methyl groups - so one needs to limit things such as methyl b12 and use a different form etc. etc....
CD - if you don't have improvements - try draining sulfur and ammonia. Also, limit sulfur supplements and possibly meat. When you eat meat, eat it with yucca. Yuck!! OR, better yet, get the sulfur strips on the Holistic heal site and see if your sulfur is too high. I would think anyone should consider doing that even before trying the simplified protocol. Just my opinion after spending time researching the methylation issues.
nomoremuscles - Yasko does a lot of testing as she treats the methylation cycle issues so that she can monitor toxins and adjust the protocol. She knows how to treat these mutations in part, due to normalization of lab values of scores of people that she has treated over many years.
Lots of people do start to purge toxins including heavy metals. This is why some people may not feel well for awhile. I believe many have lyme or parasitic infections which quite a few don't accept and don't treat. This is another reason why some don't feel a lot better.
I've been monitoring both Yasko groups for over a year and have seen a fair number of people with CFS who have improved. In addition, almost everyone in my family (sisters, their children and my mother) seem to sleep better on the active form of folic acid. They are all sick like me too.
Bottom line, this is just one piece of the puzzle for many people. I firmly beleive that most everyone that is sick and has these mutations also have infections that they must deal with too.
Yes, I have noticed that many are not addressing the infections. It seems to me, that many in the group think that if the methylation improves and the immune system gets cranking, the infections will take care of themselves. Maybe this is true ... I don't know.
Is your family doing the whole simplified protocol, or just taking the active form of folic acid? That improved sleep sure sounds good about now.
You really seem to understand it very well, like some of the mom's on Yasko's site (that seem more like bio-chemists). I could never grasp it very well; like sand falling through my fingers. I have considered trying the simplified protocol, but have seen too many people get knocked backwards and I cannot afford that at this point. Also, my gut is so bad that I can tolerate few foods and fewer supplements (hardly any at all). And I respond very well to MB-12, taking a 25mg injection nightly, and I know that that would have to go, along with the shot of B-comp I take every other day.
Thanks for your insights. I will keep watching. I hope you get better.
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TerryK
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hey muscles, I think it's true that some people can be infected with borrelia and not have symptoms but I personally think it is unlikely that infections will disappear on their own in those of us who have been sick for a long time. Most of us seem to have more than one infection and the infections have really taken hold and have done some damage.
I think there is likely more than one or two issues that are keeping some of us sick. I have the methylation cycle issues and also the genetics for difficulty in getting rid of mycotoxins and borrelia toxins.
Who knows what other problems some of us have that have not been discovered or addressed. I plan to hit everything that I know about. Time is slipping by and I'd like to have a few good years.
muscles asked: Is your family doing the whole simplified protocol, or just taking the active form of folic acid? That improved sleep sure sounds good about now.
Several family members have been taking the prescriptions that contain the active form of folate. Metanx and deplin and there are others.
One sister stopped because of symptoms (probably related to purging toxins) and several others seem to be having symptoms that are likely related to release of toxins.
They started using the huge doses of folate because the doctor who tested my sister for the MTHFR mutations put her on deplin. He didn't test for the sulfur issue and doesn't seem to know anything about it and doesn't care to know about it. He said the Yasko book was too hard to read.
From what I've read, it is not a good idea to take huge doses of folate. You can dump large amounts of toxins and make yourself really sick. Also could be a big problem for those with the sulfur issues because you end up making more toxins for your body to deal with.
The idea is to compensate for your problem as if you didn't have the problem. Pharmaceuticals generally use brute force. Not the best option here.
I'm starting my brother on the simplified protocol as soon as all the products come in the mail. I've got the price down to $50 per month. We'll see how he does and if he does well, perhpas the others will consider it.
You wouldn't have to get rid of methyl b-12 if you are doing well with it. You might consider starting with very small doses of the simplified protocol to see if you respond. If you have problems, you could take even smaller doses. If you do have the methylation cycle issues, it would be important to treat them.
Thanks for your well wishes. I hope you getter better quickly as well.
Take care, Terry
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TerryK
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One more thing muscles, I forgot to tell you that the guy who created the simplified protocol apparently feels that methylcobalamin could cause mercury to go directly to the brain. I don't know if he is right about that or not but I wanted to pass it on.
What happened to Michael?
Terry
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Rianna
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[QUOTE]Originally posted by TerryK:
Great infor TerryK - once your methylation panel was run who did your interpretation of the results and set your protocol?
So even if your results come up bad is it treatable?
If you cant post the name here can you PM me
Thanks Rianna
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lymeHerx001
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b12 causes mercury to go into the brain? Is this true? Then I wont take my b12 anymore.
I think mercury is and has been an ongoing problem for me.
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Keebler
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TerryK
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lymeherx wrote: b12 causes mercury to go into the brain? Is this true? Then I wont take my b12 anymore
I don't know if it is true. It is actually METHYL b12 that Dr. Rich Van Konynenburg (not an MD) is concerned about. I think he also has said that mercury blocks b12 and higher doses of b12 are needed in people who have a large mercury load. There are many forms of b12 - several are recommended in the simplified protocol.
This is some of his explanation of the simplified protocol that talks about the methyl b12 and mercury concern
http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1330540 Perque B12--This is sublingual hydroxocobalamin. The dosage is fairly large, in order to overcome the blocking of B12 by toxins such as mercury in CFS. As I mentioned above, B12 is needed to stimulate the activity of methionine synthase.
Methylcobalamin is actually the form needed, but some people cannot tolerate supplementing it for genetic reasons, and I'm also concerned that people with high body burdens of mercuric mercury could move mercury into the brain if they take too much methylcobalamin.
Methylcobalamin is the only substance in biological systems that is known to be able to methylate mercury. (Note that methylcobalamin is the substance used by bacteria to perform methylation on environmental mercury, and the resulting methylmercury is concentrated in the food chain up to the large predatory fish and enters the human diet.)
Methylmercury can readily cross the blood-brain barrier. Methylation of mercury by methylcobalamin has been reported in the literature to occur within the bodies of guinea pigs in laboratory experiments. Perque B12 is sublingual to compensate for poor B12 absorption in the gut of many people.
You may want to change to another form of B12 if you think you have a high mercury load. You might find more about this from different sources if you do more research.
I don't take methyl b12 due to other issues so I haven't spent a lot of time researching it.
Terry
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emla999/Lyme
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Look what I found.
According to a Duke University scientist, Dr. Randy Jirtle, an ingredient found in some plastics, Bisphenol A, can actually induce HYPO-methylation and block the methylation cycle.
TerryK
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Rianna wrote: once your methylation panel was run who did your interpretation of the results and set your protocol?
The panel from Dr. Yasko comes with a detailed list of supplements for each mutation. You can work with her if you want. She will interpret follow up testing to monitor amino acids and toxins and will make recommendations.
You order the tests from her site but they are not covered by insruance. I beleive her interpretations are part of the cost but I'm not positive about that.
I did try to find someone who could help and drove 4 hours 1 way several times to consult with a doctor who supposedly understood the methylation issues but he didn't know as much as I do and was giving advice that would have caused me more problems because he was paying no attention to sulfur issues.
There is another doctor who works with Dr. H. in CA. She is an ND from Nevada, Dr. R. I consulted with her one time but I cannot afford to work with her which is why I've spent so much time learning about it myself.
Rianna asked: So even if your results come up bad is it treatable?
Yes
Terry
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Keebler
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-
Emla,
Thanks for those links. In addition to all the plastic, all the scents in products are also becoming a huge problem as endocrine disruptors to our ability to metabolize.
---
In addition to considering the detailed information that Terry has so graciously provided, anyone with detox issues might also want to look at some of this:
The subject got very DEEP here, I felt out of my depth. I was following it, though.
The truth is, I was trying to figure out if doing the panel was worth the money. My LLMD thought maybe it isn't, because he was thinking to supplement me with the things that the panel might show that I need anyway.
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Rianna
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quote:Originally posted by TerryK: Rianna wrote: The panel from Dr. Yasko comes with a detailed list of supplements for each mutation. You can work with her if you want. She will interpret follow up testing to monitor amino acids and toxins and will make recommendations.
Rianna asked: So even if your results come up bad is it treatable?
Yes Terry
Terry you are an ABSOLUTE STAR
Thank you for explaining and you have taken such a load of mine (and others) minds as knowing it is treatable is fantastic.
I have just had some other tests run and depending on these results I may have to have this panel run. I was so worried about the results but you have put my mind at rest more than you know
I have in the past taken the perque b12, intrinsi b12, and folapro. I had a huge detox reaction when I first started taking these, and I believe it was the folapro (I could only take 1/4 pill, now I take a whole). However, when I started abx after having taken these for a few months, I think it helped me cope better with toxicity, or may have reduced my toxic load. I stopped when I went on abx and have just recently added back in just the folapro. My multi has 800mcg folate and b complex has folate too. In addition, I am doing b12 shots. The folapro has 800 mcg as well.
Terry, do you think I should cut out the folapro altogether? I forgot the part about not taking any other supps with folate!
TerryK
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So glad the info was helpful Rianna.
Mandy - did you get the genetic testing? If so do you have the SUOX mutations or CBS upregulation? Did you use the sulfur strips to determine if you have a sulfur problem? If so, what were the results?
Are you on the full simplified protocol? If not, exactly which methylation cycle supplements are you taking?
If the active form of folate was helping you before, I'd probably cut out the other folate that competes with it and start at a very low dose of the active folic acid.
Does your doctor know anything about the methylation cycle issues? If so, I would get his opinion.
Terry I'm not a doctor
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No I never had any genetic testing done. I haven't used sulfur strips...but am on bactrim and don't seem to be getting any bad effects from it. Since the testing is so expensive and we know most cfs/lyme patients have issues with detox I thought I'd try them to see if they would help.
The only methylation supps I am currently taking is the folapro, because this one I think produced the most detox reaction.
I will ask my LLMD when I see him about the folapro in addition to the folates in multi. I forgot about the competition of the two.
My old LLMD did say take at least 1,000mcg folate when on plaquenil. I think what I might have to do is reduce the dosage of the folapro because I can't find a multi or b complex with out folate.Thank you for your help.
posted
Hi Michael, I am rarely well enough to post much here, but it seems to me that the methylation block isue is an important one for all to consider.
Here are some leads to further information about the methylation pathway block and treatment protocol.
The originator of the Simplified Protocol(Dr. Konenyberg, PhD not MD)participates on various health boards. He doesn't treat patients, and is not directly affiliated with lyme. He is a wonderfully compassionate professional who has been studying contributing causes and treatment options for CFS for the past decade.
Individuals with chronic illness (no matter what the source of chronic illness) seem to be prone, either through genetics or illness, to acquire the methylation block. No one really knows for sure, but it is thought there are genetic factors as well.
Dr. Van Konyeneburg has adapted his "simplified protocol treatment program" from Dr. Amy Yasko's full protocol. The "simplified approach" was designed to help reduce costs for the patient, and it has worked for many. Others may require the full Yasko approach which is more complex and more expensive.
Much of the specifics of Dr. Van Konyenburg's work and comments are available online through ProHealth.com and YahooGroups. There is enough information for a well-informed person, with the assitance of your doctor, to test for the methylation block and try the "simplified protocol". Dr. Van Konyenburg strongly recommends that patients work with the oversight of a medical clinician.
The less expensive test that Dr. Van Konyenburg says is available through Vitamin Diagnostics in NJ. If I recall correctly, my test was about $300. Info on testing requirements and costs can be obtained directly through the lab at:
Vitamin Diagnostics, Inc. Tapan Audhya, Ph.D., Director Rt. 35 & Industrial Drive Cliffwood Beach, NJ 07735 USA Phone:+1 (732) 583-7773 1.800.886.7773 Fax: +1 (732) 583-7774)
The lab test requires a doctor's order, but laws in many states allow any doctor, naturopath, or even chiropractor can order tests. The lab will be able to advise further.
From what I have read, Dr. Audhya is available to consult with your doctor to help interpret the existence/extent of a block. Much like how Nick Harris consults with patients and doctors regarding labs done at Igenex.
If a methylation block exists, one can then contemplate treatment through the more affordable Van Konyenburg's July 2007- Simplified Treatment Approach Based on the Glutathione Depletion-Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS).
While the simplied version was originally adapated to address CFS, the Yasko full version was developed to treat autistic children. The Simplified Version is now being used by various doctors in treating methylation blocks that exist in many different forms of chronic illness (CFS, FM, Lyme, etc).
In my case, I think anesthesia from surgery caused or at least worsened an existing block.
There are studies showing several different things can disrupt the pathway and cause the block, especially if one has genetic predispition factors.
The critical link seems to be that the block disrupts the body's ability to manage glutathione which is vital to detoxification.
Sorry, I don't don't have enough insights or cognitive ability to understand it all or explain. Just sharing what I have read and believe to be related to my own situation. It may or may not apply to others.
I started the methylation simplified protocol in Nov 08. It takes approx one month or two to incorporate each of the 5 supplements (listed below). You start with 1 of the 5 supplements, and add another one to the mix every week or two based on your tolerance capacity.
Allow time for your body to adjust/acclimate until you are taking the full 5 without intolerable herxing. If substantive herxing occurs, then slow the process down before adding the next supplement.
While the amounts of each supplement is fractional, they carry a huge synergistic punch. Several folks on Prohealth.com have reported they had to start at substantially lower levels.
Unfortunately, like most treatments for chronic illness, one gets worse before you get better. Dr. VanKonyenburg states it can take several months/years to fully correct the block, so patience is a virtue. This is all a very new and not yet studied leading edge of medicine.
Dr. VanKonyenburg has been collecting data from several nationally respected medical physicians who are using the protocol to treat patients with chronic illness (Dr. Jacob Teitlebaum, Dr. Derek Enlander, Dr. David Bell, Dr. Neil Nathan, etc.)
As I understand it Dr. VanKonyenburg will be presenting the data results in a poster paper at the upcoming international CFS conference in Reno, Nevada in March.
Based on what I have read, the 30 patients seem to have discernable changes with lab findings. Thusfar 29 of 30 Dr. Nathan's patients have experienced improved labs between 3-6 months of starting the simplified protocol. Not sure if they are yet reporting actual symptom improvements.
Therefore, it might not be advisable for us to judge effectiveness of whether it is working for us or not based on only a month or two of treatment.
The simplified protocol is very specific and amounts should NOT increased beyond recommended levels. More is not necessarily better, and could in fact be worse. The only supplement Dr. Konenyenburg recommends progressively increasing is the multi-vitamin from 1/2 tablet to 2 tablets.
It should be noted, that those who have "tinkered" with the formula on their own frequently report MUCH worse herx reactions and many eventually have to stop the protocol.
I ordered all my supplement components through Dr. Yasko's website, holisticheal.com.
Simplified-5 Methylation Protocol:
1. Folapro One-quarter tablet (200 micrograms) 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.
2. Intrinsic B12/folate One-quarter tablet. This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as 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.
3. Complete Vitamin and Ultra-Antioxidant Neurological Health Formula from Holistic Health Consultants Up to two tablets (It's best to start with one-quarter tablet and work up as tolerated) 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.
4. Phosphatidyl Serine Complex One softgel capsule. This includes the phospholipids and some fatty acids)
5. Perque B12 One sublingual lozenge. 2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract.
What I have learned for my own situation is that until I resolve the methylation block and improve my detox pathways, I am not tolerating lyme treatment very well. So, for now, I had to stop further lyme treatment until I can first get this problem improved, based on recommendations of LLMD. "Your mileage may vary."
Hope this helps.
[ 02-15-2009, 10:05 PM: Message edited by: jam338 ]
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posted
Wow, Jam (and everyone else), thank you for such an incredible wealth of information.
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The link to the simplified protocol doesn't work...
Thank you for this thread! Robin
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CD57
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I am doing the simplified protocol as outlined by Jam above.
I was not cautioned that I would feel worse before feeling better. What does this mean? Is it some kind of herx?
What I have noticed in the short time I've been taking it (at full dose by the way, as I was told) is more energy, just as the doc told me to look for. I guess this means I have a block somewhere and the supps are fixing it?
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Rianna
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quote:Originally posted by R62: Is there a link for the sulfur strips? Robin
Is the Genova Comprehensive Detox Profile that checks Phase I and Phase II detox in liver a different test that is worthy on its own or does the Methylation panel include the same info plus the SNPS.
Thank you.
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Does the cheaper test cover all the info that the Yasko test covers?
Thank you...
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Rianna
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I personally had the Genelex Drug Gene extensive profile run to see what drugs I can and can not take which is totally seperate from any detox test as it works with an interactive programme to guide your LLMD to what meds are correct for your genotype.
Then I have also had the Genova Comprehensive Detox Profile which does show what drugs to avoid but nothing like the Genelex test as again they have genetic consultants and the interactive software showing every drug/vitamin/food etc to avoid depending on your genotype - so the Genova Comprehensive Detox Profile was more to show my detox capabilities and covers the following
Phase I: Cytochrome P-450 * CYP1A1 * CYP2A6 * CYP2E1 * CYP1C19 * CYP1B1 * CYP2D6 * CYP2C9 * CYP3A4 Phase I is the first line of defense in the detoxification of all environmental toxins, including pesticides, herbicides, pollutants, and solvents, pharmaceuticals and nutraceuticals, as well as many of the body's own waste products (including steroid hormones). Phase II: Conjugation of Toxins and Elimination Methylation (catechol-O-methyltransferase)
* COMT Polymorphisms may lead to impaired metabolism of the catecholamine neurotransmitters (dopamine, epinephrine, and norepinephrine) and may predispose individuals to anxiety, ADHD, alcoholism, and rapid cycling in bipolar individuals.
Acetylation (N-acetyl transferase) * NAT1 * NAT2 NAT detoxifies many environmental toxins, including tobacco smoke and exhaust fumes. Polymorphisms may result in slow or rapid acetylation, both associated with increased risk of lung, colon, bladder, or head & neck cancer. Glutathione Conjugation (glutathione s-transferase)
* GSTM1 * GSTT1 * GSTP1 GST detoxifies many water-soluble environmental toxins, including solvents, herbicides, fungicides, and heavy metals (eg, mercury, cadmium, and lead). Defects in GST activity can contribute to fatigue syndromes and many cancers. Oxidative Protection (superoxide dismutase)
* SOD1 * SOD2 Mutations affecting these antioxidant enzymes can lead to increased free radical activity and cell damage, and may increase the risk of developing neurodegenerative disorders.
Depending on both sets of results my LLMD will know what to prescribe and what detox pathways I need to work on and if I need to have the full methylation panel done.
posted
CD57, I am guessing that everyone can have different types of responses, like with with all treatments.
But, here are my more specific thoughts. Keep in mind this is just my two cents worth, and I have NO medical background whatsoever. I am just a very sick cookie who is bedridden and has read a lot of Dr. Van Konynenburg's posts and exchanged emails with him a few times trying to clarify things.
Its too bad that ProHealth.com recently changed their message board software. The new design search tool is practically useless. Otherwise, I would encourage all to go there to read RichVank (Dr. Konynenburg) posts. The search tool still works "somewhat" but isn't sorting by username and isn't sorting properly chronologically. You get a hodgepodge of results. I think he uses the same user name on CFSyahoogroups.
I should emphasize that RichVank is VERY public with his work and information in hopes of helping chronically ill patients better understand the methylation block that could be a factor in their illness and an obstruction to their healing treatment process. What I am sharing here is things he has prolificly posted elsewhere himself. I am just sharing what I read by him.
CD57, glad you are getting results. Another patient I correspond with recently started (same doctor) on all Methylation 5 simultaneously. Unlike your reaction, she had a horrible herx. DrG stopped the process for about a week and is now having her restart with a slower one at the time titration to see how she does.
Yes, the protocol can produce a herx. For some it can be quite severe. Those who seem to be posting that they experience the most severe herx reactions have also posted they have severe mold illness. Many, if not most, had to move. I don't know that there has been an official link made regarding mold and severe herx with the protocol, but DrVK suspects there might be a possible connection and warned me to be on the look out about it.
To explain further, when the methylation block is lifted it allows the body to better manage glutathione processes. It seems like it would function like unstopping a plugged drain, where once the clog is gone, "stuff" rushes into the drain. Some of us can't tolerate that overload of the "rush". It seems that might also be indicative how well things are functioning downstream from the location of the original "clog" (methylation block).
I hope this is making sense. So, it seems that lifting the "clog" through a slow process might be a pre-cautionary and more "body-friendly" approach. Just a thought on my part after having read some of the substantial herx reactions experienced by a few.
CD57, I am guessing since you have had quite a bit of success with other treatment to date, that it sounds like you didn't have a huge "clog" and maybe things are lifting as they should for you? If so, maybe you can capture that remaining 15-20% in your healing. It certainly sounds promising that you experienced positive increased energy etc. I would stick it for a few months and see what it might bring for you.
R62, Rich has previously written online that the Vitamin Diagnostic test does not cover all the level of detail in the Yasko test.
Those of us who were making our decisions about which test etc. did so based on the criteria that unless one is going to invest the increased expense of doing the Yasko protocol (which is a lot more money) then it seemed to not make sense to pay for a test where you can't apply the results. As I understand it, the Yasko test goes beyond just testing for the block and also looks at genetic factors, etc. I could be wrong on specifics there. I just know it tests more than the methylation block.
For many of us, based on the recommendations of RichVank, we felt that the Vitamin Diagnostics was sufficient to evaluate the block. It is a place to start. If the block doesn't exist then it seems there might not even be a point to the rest of the Yasko testing on other elements. Again, I could be wrong.
Hopefully, a lot more information with clinical data support will be forthcoming after the March conference. All of this stuff is on the leading edge of chronic illness patient testing/treatment.
The "Rich-5 Protocol"("simplified protocol")has reportedly helped others in getting their bodies to improve detoxification.
In May or June I will retest through Vitamin Diagnostics to see if the block has lifted any. For right now, I have learned the hard way to not keep throttling my body with creating more debris than my body can possibly eliminate.
Until the block lifts some for me I think I am going to mostly focus more on body support processes and things can help improve detoxification elimination.
[ 02-13-2009, 06:45 PM: Message edited by: jam338 ]
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There is also similar good information posted regarding the methylation block on Sarah Myhill, M.D.'s website. She is a medical doctor in Wales who consults with Dr.Van Konynenburg and utilizes his protocol: http://www.drmyhill.co.uk/articles.cfm?subject=Fatigue
Wish I could explain more, but I have substantial cognitive problems in navigating websites which is why I am unable to post or read here very often.
All of the above is from earlier online research where I copy/pasted info in MS Word file for keeping. Hope this helps.
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Rianna
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posted
GREAT info jam338,
I was in the same boat regarding not tollerating Lyme treatment but am unsure if this is a methylation problem as my LLMD put me in IV glutathione with CSM, colonics and Lymph drainage and now I can take very high dose Ab's although I am still checking the detox pathways out as I want to ensure I can continue to treat.
Honestly though I have not followed the methylation protocol just what I said above and I went from only tollerating 1/4 pill of anything to now being on
2gms IV Rocephin 4 malarone 1300mg Quinine Sulphate 900mg Clindamycin
So I assume there are many other detox problems other than just the methylation pathway?
posted
hi Rianna, good to hear you have improved toleration of meds, that is wonderful!
The detox elimination pathways are confusing to me. I am sure there must be other pathways than just methylation. I remember reading something about the P450 pathway, but for the life of me I can not remember what I read. I don't remember if the P450 is an elimination or energy pathway. Sorry, lymebrain at work.
I have substantial cognitive problems and don't retain info well. Therefore, knowing my limitations, I print out and copy/paste things into MS Word documents for later retrieval when the lightbulb goes off or the dots get connected.
I think I read there is a separate test for the P450 pathway, but don't remember what it is. I haven't had that test done.
It might be of interest to you and others that some of the leading CFS specialists have studied and reported on these body function areas. That is actually how I encountered and learned from RichVank and others about the methylation block issue. Glad I did since I have it.
It might also interest y'all that there is an elite group of about 30 high profile international chronic illness specialists who have formed to study chronic illness (CFS, FM,viral, lyme, mold, etc factors). Of interest to this board is that there is a subgroup of LLMDs who are confidentially working with the group. Confidentially meaning for their own protection/anonymity. DrB is among them so the lyme factor is being well represented.
This group is working privately, the result of very generous private funding from a wealthy SF businessman. This anonymous charitable donor's wife is chronically ill. He wants answers for her and others (us) about contributing factors and effective treatments of the chronic illnesses that plague so many of us. The group has been meeting for a little over 2 years.
Dr. Amy Yasko has been among the pioneers working to learn and treat this pathway. This pathway is impacted in autistic children. Not sure, but I think that some may think that vaccines may contribute/cause the block. It is all way beyond me, but interesting.
The only public written report that I am aware of regarding the fact these doctors are meeting is on Dr. Jacob Teitlebaum's website, endfatigue.com. The direct link to the article is: http://www.endfatigue.com/web-newsletters/nl_42c_10-21-2008.html As self-reported on his website, Dr. Teitlebaum is one of the doctors and is chair of one their committee groups. For those interested, his website might be a resource to bookmark and watch for new information about the work and findings of this group.
[ 02-15-2009, 09:16 PM: Message edited by: jam338 ]
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So I assume there are many other detox problems other than just the methylation pathway?
This is just my understanding as a neophyte concerning liver detox, but there is phase one (the P-450 one), with its eight enzymes,
and then phase two, with its ten categories of detox, of which the detoxigenomic test tests for four: methylation, acetylation, glutathione and oxidative protection (superoxide dismutase).
I was told there are maybe 20 enzymes involved in the methylation one; the detoxigenomic test tests for the general whole family of them.
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Rianna
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posted
quote:Originally posted by Robin123: [This is just my understanding as a neophyte concerning liver detox, but there is phase one (the P-450 one), with its eight enzymes,
and then phase two, with its ten categories of detox, of which the detoxigenomic test tests for four: methylation, acetylation, glutathione and oxidative protection (superoxide dismutase).
QB]
Hi Jam and Robin,
Yes I was told you have to check firstly what you put in your body i.e. drugs/vits/herbs etc which influences Phase 1 so if you take the wrong meds for your genotype then you could set off serious problems in Phase 2 & 3 detox, if the drug is wrong for your genotype. This is why I have had the GENELEX EXTENDED DRUG INTERACTION PANEL run to determine what I can and cannot take, which is worked out by my Genelex test and is entered in to a computer programme and it will then tell my LLMD what Antibiotics/meds/vits/herbs I can take and at what dosage - so effectively stopping the risk of any potential detox problems in pahse 2 & 3, the computer system works it all out for your doctor once your results are entered.
In addition I am having the Genovations DetoxiGenomic Blood Profile test to determine my detox capabilities.
SO.......
By knowing both we can give me the correct meds and work on the correct detox.
I feel the GENELEX is VERY important as so many of us have no idea of what meds we can and can not take and if we take a med that we can not metabolise I truly believe this could cause SERIUOS problems or even cause a detox blockage as jam said about the anesthetic causing the methylation block, in his/her case.
I will update you when all my results are in as when my GENELEX tests come in I and my LLMD will be working with a Genetic consultant at HELEX HEALTH http://www.helixhealth.org/About_Helix_Health.htm As I refuse to take any further meds/vits etc by 'Guesswork' now, as One Size DOES NOT Fit All'
posted
I am confused. What is the difference between the methylation panels, Yakso and Konenyenburg's and the Genovations DetoxiGenomic Blood Profile?
I do understand that the Konenyenburg panel does not go into as much detail as the Yasko, but it addresses the SNPs most likely effected by CFS, lyme etc.
I think the Genova Comprehensive Detox panel is different in that it just tests phase 1 and 2 and is this testing in any of the above mentioned?
Thank you.
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lymeHerx001
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From my understanding the Genovations DetoxiGenomic Blood Profile only says what might be happening. It doesnt prove anything.
Im thinking twice about spending the money for it even though I know that my liver is probablly screwed up.
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TerryK
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Sorry I haven't been back here for awhile. My husband is on vacation this week and today is his birthday but I wanted to quickly check back in.
The Vitamin Diagnositics test does not measure the actual SNP's from what I've seen but then I'm no expert on that test since I got the full genetic test of Yasko's.
As far as I can tell, the vitamin diagnositics test measures glutatione, Adenosine, folic acid and other things that would tell one if they have a block but not if they have specific genetic mutations.
Again, I'm no expert on the Vitamin Diagnostics test and only know what I've read from other people. I took the full genetic test because that is what my LLMD asked me to do.
Yasko initially treated neurological disorders and found out by accident that the same treatments that she was using for those disorders (ALS was one of them), restored language in an autistic child. That got her interested in autism.
She states in her forum that she feels that besides autism her protocol is helpful for Fibromyalgia, Chronic Fatgiue syndrome, ADD, and that it is helpful to know the genetics for those who have certain genetics combined with infectious diseases and environmental toxins.
I'll come back next week and address the sulfur symptoms and look for any other quesitons that didn't get answered in case I can answer them.
I haven't had a chance to read all of the info that others have provided but it looks like some good info here.
Terry
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lymeHerx001
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NAC gives me a migrane.
Milk Thistle makes me suicidal. (truth)
What the hell is going on? Why cant I find a real doctor to explain thing to me.
My liver enzymes are always NORMAL! Genetic marker for detox and arthitis gene was neg.
Yale was a waste.
Biaxin makes me feel good then like death if I continue taking it.
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Keebler
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. . . Individual variations in our cytochrome P40 enzymes help to demystify why there are so many variations in how we respond to drugs and herbs. . . .
- Full chapter at link above.
===================
There are hundreds of herbs that can help liver function. A couple dozen are discussed here:
lymeHerx001
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posted
Only thing I can think of is that NAC is said to release mercury from the gut and make it go directlly into the brain.
My LLMD also said that it contains sulpher and maybee the suphlization cycle (sp) is not working properlly in the liver.
I then started taking molybdenum because the liver convers aldehydes and sulpher into acetic acid and coenzyme a
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lymeHerx001
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I have also tried high doses of binders like welchol that bind up the stuff in the bile. I noticed next to nothing except increased stools.
What a mystery.
Milk thistle is said to block toxins coming into the liver so perhaps that it makes them circulate even more?
Im gonna stick with schisandra for now. See what happens like all this ****
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posted
I was one of the first to try the simplified protocol when it was discussed over at ProHealth. I agree: they needed to change their software to make the forum easier to use, and instead, it's now harder to access information than it was before!
Anyway, I used the products in the simplified approach and felt improvement for a couple of months, and then felt a blockage. Or, possibly, that something was moving too fast for another process to keep up. I stopped using the 5 products.
Now, I've been getting IV glutathione pushes, and at first they were not helpful at all. Then molybdenum was added to the glutathione and it seems to work better for me. I don't understand the connection, but have been told I probably have trouble in the sulfuric detox pathway. I'll be asking questions about that at the next appt.
I could be wrong, but I thought I was told there are 4 major detox pathways. I don't know how it was determined which one was causing me problems, but part of it was my explaining that the simplified protocol helped me for a time and then seemed to stop being beneficial.
Anyway, this is a very good thread, and if I find some of Rich VanK's posts over at ProHealth, I'll copy and post it here, as he does such a good job of explaining his theory. He welcomes questions, and is very good at breaking down the info, so it's easily understood--even by us with brainfog.
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lymeHerx001
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how are you with sulpher containing foods like eggs?
I live off eggs and never have a problem with them. I love them now because they sustain me.
What about sulfa drugs, ever have a problem?
I heard that molybdenum is needed to detox sulphur and then it also helps turn aldehydes from alcohol and candida into acetic acid and then into coenzyme A which is needed for many body processes.
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lymeHerx001
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posted
Phase I
Oxidation Reduction Hydrolysis
Phase II
Methylation Sulphation Acetylation Conjugation
Posts: 2905 | From New England | Registered: Sep 2004
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Comprehensive Detox panel covers Phase 1 and 2 workings.
"The Vitamin Diagnositics test does not measure the actual SNP's from what I've seen but then I'm no expert on that test since I got the full genetic test of Yasko's.
As far as I can tell, the vitamin diagnositics test measures glutatione, Adenosine, folic acid and other things that would tell one if they have a block but not if they have specific genetic mutations." Terry (thanks!)
Detoxigenome tests a SNP or some but not all... genetic.
Yasko many SNPs all genetic.. or does it include what is in te vitamin diagnostic test?
I am neurological and feel ALS-ey. Nerves are messed up to limbs and in spinal cord.. this AFTER treatment started, not before. I think it has to be related to ability to clear toxins and possibly more than just the 'shoemaker' gene.. or a reason to explain it.
I think I will get the comprehensive and then decide on one of the other 3. If Yasko covers what is in Vitamin Diagnostics, I'll just go for that. I just hope the interpretation is not the other expenditure llisted below tht test, which would bring it up to over 1000$.
I'm also interested in Allergie-Immun.
Thank you so much for this information.
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Rianna
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quote:Originally posted by R62: I think I will get the comprehensive and then decide on one of the other 3. If Yasko covers what is in Vitamin Diagnostics, I'll just go for that. I just hope the interpretation is not the other expenditure llisted below tht test, which would bring it up to over 1000$.
[/QB]
IMO its best to get the Genelex done 1st as what is the point knowing your detox genetic flaws if you have no idea what meds/vits etc you can/can not take - this is exactly why i was advised to get the Genelex and Detoxigenemic done 1st to determine my drug Genetic and detox abilites and if the detox one shows a methylation problem then to go on to have the Full methylation profile run.
I know for me the Genelex genetic consultants are the key to finding out what you can take to treat the Lyme/co-infections and then to work at the same time on detox tailored to your genetics
As how possibly without a comprehensive Drug/herb/Vitamin genelex screen will you ever know what is making your detox worse as surely if you only take the correct Drugs/Herbs/Vits for your genotype that will stop the toxic overoad.
I agree you need to know your detox gene flaws but you can not leave your Lyme/Co-infections untreated and if you know what meds you can take depending on your genotype you can go on to treat these without causing a detox problem.
TerryK
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posted
R6 asked: Yasko many SNPs all genetic.. or does it include what is in te vitamin diagnostic test?
No R6, I don't believe it does cover the same things. One is genetic testing, the other is lab values of certain substances in the body. Yes, the Yasko test is all genetic. I don't think the Vitamin Diagnostic test has any of the genetic testing.
Herx- sounds like you might have a sulfur problem. You might consider getting the strips to see if you measure high with sulfur. As you probably know, NAC and milk thistle are both full of sulfur and that could be why you are having problems with them.
Terry I'm not a doctor
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lymeHerx001
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Thanks Terry, why dont eggs bother me though. Is that a different form of sulpher?
And from what I can remember MSM did me no better or worse.
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Rianna
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Terry,
To confirm, if you have a methylation problem can you still continue to treat Lyme & Co-infections with antibiotics etc.
As again you can not let the Lyme & co infections just sit there without treatment, so i am hoping one can.
TerryK
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posted
lymeherx asked: why dont eggs bother me though. Is that a different form of sulpher?
Good question. I don't know the answer. Eggs never bothered me either and turns out I'm allergic to them. With so many symptoms it's hard sometimes to sort out exactly what causes which symptom.
I have the CBS upregulation meaning that sulfur is a problem for me so I should have noticed that eggs were a problem if they are a problem for people with sulfur issues. Doesn't mean I would have noticed though.
lymeherx asked: And from what I can remember MSM did me no better or worse.
Same here.
I think the body can process sulfur up to a point, depending on your specific mutations. CBS and SUOX both deal with sulfur. I only have one mutation on CBS and none on SUOX.
For me, I need enough molybdenum and B12 in order to process sulfites into sulfur. I also need to limit sulfur sources so that my body has less to process.
Ammonia can be an issue too and the enzymes that process it can be depleted. If they are depleted, other things that are less obvious become affected. It is somewhat complicated and I'm still learning.
Rianna asks: To confirm, if you have a methylation problem can you still continue to treat Lyme & Co-infections with antibiotics etc.
I have continued to treat as I work on the methylation cycle blocks. Treating the methylation cycle blocks means that you may have more toxins to process but at the same time, your body should be better able to process them.
Like you, I feel that not treating lyme and co-infections is not an option. Some people like to take a little time off abx in order to let their body deal with the toxins that are finally able to be mobilized and excreted once the methylation cycle is open.
It is a matter of personal choice and something that we should be discussing with our doctors who hopefully know something about it. Carefully adjusting both treatments is probably necessary so that one can deal with the die-off and toxins without overwhelming or damaging the body.
I'm stil learning.
Terry I am not a doctor
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Rianna
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quote:Originally posted by TerryK: I have continued to treat as I work on the methylation cycle blocks. Treating the methylation cycle blocks means that you may have more toxins to process but at the same time, your body should be better able to process them. Like you, I feel that not treating lyme and co-infections is not an option. [/QB]
Thanks Terry - I think way back my LLMD said even if you have this problem you MUST treat but in patients that have this problem detox needs to be correct and high to enable us to tollerate antibiotics, you have just jogged my memory here as I remember now he did say YES you MUST treat but it will just take longer in patients that have this problem.
lymeHerx001
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posted
Thanks terry. Ammonia is on my list to be checked. I recentlly checked my copper and molybdenum blood levels and my copper was within range and my molybdenum was not high.
Unfounrtunatelly this was the insurance test so it said that the Molybdenum was just not toxic, it didnt say if it was low or not.
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posted
Thank you Rianna and Terry.
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lymeHerx001
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I meant I get sick from antibiotics.
When I dont take biaxin for a while things slowlly go down. Then when I take it I get a migrane and sleep all the time, I also take 200mg (small dose) The next day I feel better , much better. So I take some more, this time I get even more sick.
This has been the cycle. Once I reached a plateu with BIAXIN so I went off for a while and on Flagyl. The Flagyl did a little, did not herx from it, but the the biaxin blues started up again.
I want to know why this happens and whats going on in my liver. Why cant I take big doses of NAC. Because of sulphation? Mercury?
Who knows a detox LLMD in CT besides Dr. Z. He is very nice and kind but just hasnt really helped me in 6 years.
I went to yale and they sucked. Told me to try migrane medication that can screw with my heart. NICE. Anyway if it was caused by blood flow then vinpocentine should have done the trick.
Just cant take the herxes.
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Cass A
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posted
Dear Friends,
My LLMD did a genetics test on my husband, and found that genetically he couldn't detox. Since I was going slowly on Babesia treatment, he also recommended that I do the 5 factors, and told me that it cuts down on treatment time by about 40%, so far as he has seen in his practice.
However, he started us each with a chlorella challenge--ramping up the cholorella from Dr. K in a controlled manner, while taking the lowest dose of the 5 factors.
Then, we took more chlorella until we reached 30 at one time, once in the day, with no reactions. At that point, we cut back to 15 chlorella a day.
He also has us take the 5 factors just before going to bed.
Neither of us have gotten severe reactions doing the 5 factors this way.
We've only been taking them about two months, so I have no realistic report to make on how effective it is.
Best,
Cass A
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lymeHerx001
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posted
whats 5 factors ?
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posted
How much does the detoxigenomic test cost? I could not for the life of me see where it tests methylation.. what category is that under.. sorry to be so dense..
I think the detoxigenomic test covered different snps than the genelex.. and the genelex covers less, but others. Then there are two. Which one did you order?
Thank you...
quote: Originally posted by Rianna: The detoxigenomic test is an Excellent test and I have just had it run with the Genelex genetic drug reaction panel to see what drugs you can and can not take.
I think the detoxigenomic test is an excellent starting point and covers everything about detox and I believe its very reasonably priced in the states.
Rianna
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posted
quote:Originally posted by R62: I think the detoxigenomic test covered different snps than the genelex.. and the genelex covers less, but others. Then there are two. Which one did you order? Rianna
[/QUOTE]
The Genelex and Detoxigenomic test are TOTALLY different - so I had both run
The Genelex works on looking at what you can take meds/vit/herb wise and you get an interactive programme with your genetics entered so very detailed with every medication listed in the programme and you get assigned a Gene consultant
The Detoxigenomic test does look at and list meds but nothing like the genelex and no where near as detailed & it has no interactive programme so this is better as a starting point to look at detox
Again the Genelex is very comprehensive in its overall structure - you can not see what I mean until you use the interactive programme and consult with a gene consultant, this is not available with the Detoxigenomic test.
You would need to see a LLMD that uses and interprets and explains both to understand exactly what I mean
I don't get how this translates into the supplements listed above or on page 1.
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lymeHerx001
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posted
thanks, I would like to get one of these done also.
I am allready 6 grand in deby and dont want to pay any more money for treatment.
My credit score is good though, but my job doesnt pay more then 300$ a week. With that being said, I do have good insurance.
Its all a gamble!
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sparkle7
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posted
Thanks for all of the info.
How are people doing with this?
It's complicated, the tests are expensive & it's another "get worse before you get better" scenario... You can't tell for months if it's going to work.
It's doesn't sound too promising.
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Cass A
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posted
The 5 Factors are the suppliments used for the simplified methylation protocol referenced earlier on this thread. The Foliapro and Intrinsic B 12 Foliate are only available from a practitioner, as far as I could find on the internet.
I've copied the data below.
Best,
Cass A
Simplified-5 Methylation Protocol:
1. Folapro One-quarter tablet (200 micrograms) 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.
2. Intrinsic B12/folate One-quarter tablet. This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as 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.
3. Complete Vitamin and Ultra-Antioxidant Neurological Health Formula from Holistic Health Consultants Up to two tablets (It's best to start with one-quarter tablet and work up as tolerated) 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.
4. Phosphatidyl Serine Complex One softgel capsule. This includes the phospholipids and some fatty acids)
5. Perque B12 One sublingual lozenge. 2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract.
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
[QUOTE]Originally posted by R62: [QB] How much does the detoxigenomic test cost? I could not for the life of me see where it tests methylation.. what category is that under.. sorry to be so dense.
[QUOTE]
So this topic is up again tonite - the detoxigenomic test cost $400.
The methylation test is the first of four phase two tests (called the COMT gene)
Posts: 13116 | From San Francisco | Registered: May 2006
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