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.
Posts: 563 | From New Mexico, USA | Registered: May 2007
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Phase I
Oxidation Reduction Hydrolysis
Phase II
Methylation Sulphation Acetylation Conjugation
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
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$.
I'm also interested in Allergie-Immun.
Thank you so much for this information.
Posts: 861 | From USA | Registered: Dec 2008
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
quote:Originally posted by R62: I think I will get the comprehensive and then decide on one of the other 3. If Yasko covers what is in Vitamin Diagnostics, I'll just go for that. I just hope the interpretation is not the other expenditure llisted below tht test, which would bring it up to over 1000$.
[/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
Frequent Contributor (5K+ posts)
Member # 8552
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
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
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
Frequent Contributor (5K+ posts)
Member # 8552
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
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
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
Frequent Contributor (1K+ posts)
Member # 6215
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.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
posted
Thank you Rianna and Terry.
Posts: 861 | From USA | Registered: Dec 2008
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
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.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
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
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
whats 5 factors ?
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
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
Frequent Contributor (1K+ posts)
Member # 11038
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.
Posts: 861 | From USA | Registered: Dec 2008
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
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!
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
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.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
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
| IP: Logged |
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: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Rianna - I'd like to ask you - you had both the genelex and detoxigenomic tests done.
My recollection is that the genelex tests less detox pathways than the detoxigenomic one?
I note your comments about the genelex results coming with some instructions.
The detoxigenomic test results came back with full pages about health risks and how to minimize them, and also a full list of which meds plus other substances induce or inhibit the problem pathways.
Btw, since the detoxigenomic test tests for one's genetic capacity to detox, my doc had me do a bloodtest for current glutathione level (also done through Genova Diagnostic lab) before starting any treatment for that pathway. Don't have results back yet.
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Cass wrote: The Foliapro and Intrinsic B 12 Foliate are only available from a practitioner, as far as I could find on the internet.
No, you can buy them in many places on the internet without a doctor. They are over the counter. Google folapro or Intrinsi B12/Folate
You can get all of the products here but you can usually get them cheaper at other places. http://www.holisticheal.com/
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
How does anyone "feel" after going through all of this?
Do any of the supplements actually help with this?
I'm not big on complicated, expensive tests & treatments that may or may not help after several months.
Why not try some of the detoxification protocols available on the internet? It seems to be alot less money & hassle...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sparkle - I do sleep a lot better as do other members of my family that have tried it. Presumably better sleep will help with healing.
I've been treating for my specific methylation problems for about a year and I have had marked improvement in that time. Hard to say how much of my improvement is related to methylation cycle issues because I'm in lyme treatment too.
The first 2 years of treatment for lyme were hellish although I also had improvement then too, just not as much. My pain improved a lot with IM ceftriaxone. I don't know how much of that improvement is related to methylation cycle issues.
Yasko states that if you have these problems and they are not treated, it's like having diabetes and not treating it. You will pay in the long run.
I can't help but think that both of my aunts wouldn't be dieing of cancer right now if they had been treating for certain methylation cycle issues that seem to run high in my family.
One of the methylation cycle abnormalities that every single person in my family has had so far 6 tested, 6 have it, is implicated in colon cancer which is what one of my aunts has.
No one can tell you if this would be helpful for you without testing but you can try the simplified protocol for a few months. I was able to get enough for my brother for several months at $50 per month.
He does say that he feels better. Sleeps better, less fatigued, less depressed and this is after a month. That said, as others have mentioned, you can feel worse for awhile on this treatment too.
One pharmaceutical medication that has huge doses of the active form of folate is made specifically for diabetic neuropathy. Another similar one states that it helps make antidepressants more effective.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Terry,
Thanks for the correction!!
I'll have to look for it on the Internet again! Perhaps I can get it at a better price?
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Regarding active B 12 pushing mercury into the brain--my LLMD wants my husband and myself on it to get mercury OUT of the body--this is why he has us taking chlorella every day also.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I don't know if the concern over methyl b-12 is valid or not but I wouldn't doubt that there might be some controversy over it.
I can't take methyl b-12 for other reasons so I take 2 other forms of active b-12. For those who are interested:
Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome (CFS) by Rich Van Konynenburg, Ph.D.
Improvements. The following symptoms of CFS have been reported to have been corrected by various PWCs on this treatment. Note that these are gathered from reports from many PWCs, so that not all have been reported by a single person.
1. Improvement in sleep (though a few have reported increased difficulty in sleeping initially).
2. Ending of the need for and intolerance of continued thyroid hormone supplementation.
3. Termination of excessive urination and night-time urination.
4. Restoration of normal body temperature from lower values.
5. Restoration of normal blood pressure from lower values.
6. Initiation of attack by immune system on longstanding infections.
7. Increased energy and ability to carry on higher levels of activity without post-exertional fatigue or malaise. Termination of "crashing."
8. Lifting of brain fog, increase in cognitive ability, return of memory.
9. Relief from hypoglycemia symptoms
10. Improvement in alcohol tolerance
11. Decrease in pain (though some have experienced increases in pain temporarily, as well as increased headaches, presumably as a result of detoxing).
12. Notice of and remarking by friends and therapists on improvements in the PWC's condition.
13. Necessity to adjust relationship with spouse, because not as much caregiving is needed. Need to work out more balanced responsibilities in relationship in view of improved health and improved desire and ability to be assertive.
14. Return of ability to read and retain what has been read. 15. Return of ability to take a shower standing up.
16. Return of ability to sit up for long times.
17. Return of ability to drive for long distances.
18. Improved tolerance for heat. 18. Feeling unusually calm.
19. Feeling "more normal and part of the world."
20. Ability to stop steroid hormone support without experiencing problems from doing it.
21. Lowered sensation of being under stress.
22. Loss of excess weight.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
good find sparkele, every little bit helps. Im one that cant handle the years of herxing.
Posts: 2905 | From New England | Registered: Sep 2004
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I have alot of those symptoms that are mentioned...
Here's the simple protocol. I made some price notes on them.
Look at the above link for more info. Some people here referred to this article, as well.
---
FolaPro Intrinsi/B12/folate Complete Vitamin and Ultra-Antioxidant Neurological Health Formula Phosphatidylserine complex Perque B12
extra support-
SAMe Health Foundation RNA Formula or the Stress Foundation RNA Formula Adding glutathione support will help some people, as will adding molybdenum.
-----
1. One-quarter 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). $18.25
2. One-quarter tablet Intrinsic B12/folate (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) $17.25 (luckyvitamin)
3. Up to two tablets (It's best to start with one-quarter tablet and work up as tolerated) Complete Vitamin and Ultra-Antioxidant Neurological Health Formula 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.) $29.90
4. One softgel capsule Phosphatidyl Serine Complex (This includes the phospholipids and some fatty acids) $39.50 or $14.54 (Vitacost)
5. One sublingual lozenge Perque B12 (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract) $29.95
The first two supplement tablets are difficult to break into quarters.
One of the PWCs who is following the simplified treatment approach has suggested that an alternative approach is to crush them into powders, mix the powders together, and divide the powders into quarters using a knife or single-edged razor blade and a flat surface.
The powders can be taken orally with water, with or without food, and do not taste bad.
Some people have asked what time of the day to take the supplements.
A few have reported that the supplements make them sleepy, so they take them at bedtime. If this is not an issue, they can be taken at any time of the day, with or without food.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Question: Is taking Methyl B-12 shots bad if I have any of these issues at all?
My LLMD's PA put me on the Simplified Protocol outlined above with the 5 supplements, but she also put me on methyl B12 shots that I do in a muscle, 3 times a week.
I was wondering if those two things contradict each other (being on the Simplified Protocol, but taking the Methyl B12 shots)? Should I be on a different form of B12 shots (not the methyl ones) if I have issues with the methylation cycle?
The only panel I have had done is the Vitamin Diagnostics panel. I was low in adenosine and Folic Acid (RBC). On a lot of the other things this panel tested, I was at the bottom end of normal, but still within normal range. (this was for almost everything else on the panel that was tested).
Also, I seem to have tested high for some chemical pollutants like styrenes and phthalates, so it seems like in general my body does not detox well.
Should I ask to have additional testing done?
The PA didn't seem to recommend additional testing. She just wanted to try what we are doing so far, which is the 5 supplements and the methyl B12 shots. They aren't working miracles, but maybe it's too early to tell. Oh, and she also put me on transdermal glutathione, which is not producing a huge effect in me so far.
I have another phone consult tomorrow with LLMD's office, and I was just wondering if anyone could give me any more info on the two above questions, since my LLMD's office didn't seem super knowledgable.
Thank you so much!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
How much does the Genelex test cost?
Posts: 311 | From CA | Registered: Jul 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Great sleuthing sparkle!
Sparkle asks: Is there any actual proof that not treating this can lead to cancer? Seems there are many other sources of cancer in the world as it is...
I doubt there is absolute proof that not treating specific polymorphisms leads to cancer or other illnesses that are associated with some of these methylation cycle mutations because it's not only genetics but environmental factors that affect ones risk for developing disease. By environmental I mean chemicals, food, infections, stress, lifestyle etc..
When I mentioned cancer, I was thinking specfically of the MTHFR polymorphisms that so far exist in every member of my family that has been tested so far. MTHFR affects folate metabolism. Folate metabolism is essential for DNA synthesis and methylation, crucial steps in carcinogenesis.
If your body has trouble converting folic acid to a usable form, you will be at a greater risk for developing cancer. If you work around that problem by supplementing with the active form of folate, you will have less risk than if you didn't work around the problem.
Much of Yasko's work is referenced by studies. That said, they are still just learning about what some of these mutations mean. Dr. Yasko studies nutrigenomics (relationships between nutrition and genes) but there is also the fast growing field in Pharmacogenomics which will likely help drive research.
The thing to understand is that methylation covers lots of genes and enzymes. Certain methylation mutations increase the risk of developing certain diseases and certain exposures may cause one to develop certain problems in their methylation pathway that they would not have had otherwise.
Sparkle asks: Without getting a test - are there symptoms of this?
There are symptoms associated with various mutations but that covers a lot of ground. I think the list that you gave above is a start.
I have looked into my specific mutations and the list of symptoms is long but apply to me and my specific permutations. Each person will be a little different based on their specific mutations. That said, Rich's theory that CFS patients have methylation problems that cause glutathione depletion is a place to start looking for general symptoms.
Sparkle asked: Are there any cross-references that you may know of off-hand that I can look at about this that are not all from Dr. Y?
This is a very broad subject but you can enter "methylation" in google and come up with a lot of information. Then get specific by narrowing your search - add "cancer" or "diabetes"
UH OH, I'm late for an appointment. I'll come back later and see if I missed anything and look for other questions that I might be able to answer.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Thanks for the info, Terry. It's alot to study. I don't know much about chemistry...
I'm just wondering if this issue makes it hard to detox everything or specific toxins? I guess you said that Dr. Y adjusts the protocol depending on the specifics of the person...
There's also the genetic test that Dr. Shoemaker does with mold. Is there any relationship between these two ideas?
If they are specific to the toxin - we may need something particular to Bb toxins...? I don't know, just a guess.
There could be 1000s of potential blockages to all the chemicals in the world. If each one is specific - it could be many years to get a grip on it.
There is another holistic doctor who has some reference to ammonia build-up, too. The doctor's from the mid-west - I forgot his name. His company makes products from herbs that grow near his place...
His last name starts with a J - if I recall correctly. I'll have to look it up later.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
From Wikipedia - It's pretty complex but it does seem to mention a relationship to cancer...
I'm not sure if Dr Y's protocol addresses this specifically.
The pattern of methylation has recently become an important topic for research. Studies have found that in normal tissue, methylation of a gene is mainly localised to the coding region, which is CpG poor.
In contrast, the promoter region of the gene is unmethylated, despite a high density of CpG islands in the region.
Neoplasia is characterized by "methylation imbalance" where genome-wide hypomethylation is accompanied by localized hypermethylation and an increase in expression of DNA methyltransferase.[7]
The overall methylation state in a cell might also be a precipitating factor in carcinogenesis as evidence suggests that genome-wide hypomethylation can lead to chromosome instability and increased mutation rates.[8]
The methylation state of some genes can be used as a biomarker for tumorigenesis. For instance, hypermethylation of the pi-class glutathione S-transferase gene (GSTP1) appears to be a promising diagnostic indicator of prostate cancer.[9] In cancer, the dynamics of genetic and epigenetic gene silencing are very different.
Somatic genetic mutation leads to a block in the production of functional protein from the mutant allele. If a selective advantage is conferred to the cell, the cells expand clonally to give rise to a tumor in which all cells lack the capacity to produce protein.
In contrast, epigenetically mediated gene silencing occurs gradually. It begins with a subtle decrease in transcription, fostering a decrease in protection of the CpG island from the spread of flanking heterochromatin and methylation into the island.
This loss results in gradual increases of individual CpG sites, which vary between copies of the same gene in different cells.[10]
[edit]Bacterial host defense
Additionally, adenosine or cytosine methylation is part of the restriction modification system of many bacteria. Bacterial DNAs are methylated periodically throughout the genome.
A methylase is the enzyme that recognizes a specific sequence and methylates one of the bases in or near that sequence.
Foreign DNAs (which are not methylated in this manner) that are introduced into the cell are degraded by sequence-specific restriction enzymes.
Bacterial genomic DNA is not recognized by these restriction enzymes. The methylation of native DNA acts as a sort of primitive immune system, allowing the bacteria to protect themselves from infection by bacteriophage.
These restriction enzymes are the basis of restriction fragment length polymorphism (RFLP) testing, used to detect DNA polymorphisms.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hoosiers asked: Question: Is taking Methyl B-12 shots bad if I have any of these issues at all?
I think I mentioned that Rich has talked about some concern with those who have high levels of mercury taking methyl B-12 but as I mentioned, I don't know the validity of his concern. I copied and pasted the info that he mentions about it in this thread if you read back through some of my posts.
Aside from that, it depends on your specific mutations as to whether it is a problem for you. For example COMT - I have 2 of the morphisms that mean I don't degrade dopamine very well. Because of that, I am not using up methyl groups like I should and thus I'm told that I should avoid adding methyl b-12. Some symptoms of excess methyl groups are mood swings, panic attacks and bi-polar mood disorder.
Hoosiers asked: I was wondering if those two things contradict each other (being on the Simplified Protocol, but taking the Methyl B12 shots)?
I haven't read anything that indicates it would be a problem. You might ask that question at the Yasko forum. A very helpful group of people and Rich sometimes answers questions there.
Hoosiers asked: Should I be on a different form of B12 shots (not the methyl ones) if I have issues with the methylation cycle?
Not necessarily. As I mentioned previously, it would depend on your specific genetics. Lots of people can take methyl b-12 with good results.
Sorry, I can't be much help with Vitamin Diagnostics. Questions about those results would be best answered through the yahoo group. Lots of people there can help with VD test results.
I can't really answer your question about whether you should get more testing. If it were me and I'd already spent the money for the VD testing, I would go ahead with the simplified protocol and see how that goes. If you don't get satisfactory results with that, then maybe do testing that would pinpoint your specific problems.
The other thing to try if you don't get good results with the simplified protocol is to work on the sulfur issue and see if that improves results with the simplified protocol. I've heard that it can take time to see improvement. If you are on the simplified protocol, you are on very low doses.
I'm not on the simplified protocol but a protocol that includes the folate and intrinsi b-12 - one that is tailored to my genetics. After I'd been on low doses for quite awhile, I moved the doses up and that helped. You would need to be very careful with that though because you can start purging a lot of toxins and make yourself very sick.
I hope your phone consult goes well.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Janice, Sorry but I've never had the test and don't know how much it costs. You could call them. I think this is the company that does the testing. http://www.healthanddna.com/
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
TerryK,
Thank you for your incredibly thoughtful replies. Very much appreciated!
I will keep all those things in mind.
The appointment went well. We are switching up my prescriptions to focus more on babesia.
I will stay on the "Simplified Protocol" for now, and also stay on the Methyl B12 shots for now, and the transdermal glutathione.
We're going to look into a couple other causes of my fatigue too.
With time (and also further investigation of some of my other issues like hormones), if my chemical sensitivities and fatigue don't improve, I will then look into more thorough testing.
The sulfer issues is another good suggestion, so I will consider that as well.
I can't remember if I ever took the time to thank you also for the helpful PM's you sent me a couple months ago, since my memory is so bad. So if I did not, thank you for those as well, I took a lot of those suggestions to heart and wrote down a bunch of stuff from there that you said.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hey Sparkle - It might be helpful to have an in-depth understanding of the chemistry but I don't think it's necessary for our purposes.
You are digging up some great info, thanks for posting it. I don't know enough to understand all the info on cancer that you posted but I find it interesting. You ask some good questions but I don't know the answer to many of them.
Some methylation cycle problems likely don't have increased risk for cancer while others do. I looked at my methylation cycle problems and found that cancer was a BIG issue. Not a big surprise because so many in my family have died of cancer. So many in fact that my aunt had taken out a cancer policy. Unfortunately she ended up needing to use it.:-(
sparkle asked: There's also the genetic test that Dr. S does with mold. Is there any relationship between these two ideas?
I've wondered the same thing myself. There probably is some relationship between methylation and the genetic information that Dr. S uses but I'm not aware of Dr. S mentioning methylation. Dr. S works with the genetic issues that cause a reduction of the specific antibodies needed to get rid of biotoxins and Yasko focuses on methylation.
Methylation is such a huge area that there is probably some overlap but I'm not a doctor or scientist and haven't studied this specifically so can't say for sure if they overlap or how they might overlap.
sparkle asked: If they are specific to the toxin - we may need something particular to Bb toxins...? I don't know, just a guess.
Certain mutations are known to cause an increase in particular toxins but I don't know of any methylation mutation that is specific for borrelia. Doesn't mean there isn't one.
sparkle wrote: There could be 1000s of potential blockages to all the chemicals in the world. If each one is specific - it could be many years to get a grip on it.
In general, the idea is to open the methylation pathway (or at least reduce some of the bottlenecks) so that the detox systems are functioning better. You can expect better detox but I'd have to dig around for the list of all the toxins that have shown up in the lab results of people being followed by Yasko. I know heavy metals start to move out along with chemicals, sulfites, ammonia etc.. It's not just about detox though. It also helps normalize brain chemistry which is huge for depression, anxiety, behavior issues, sleep and even pain.
Sparkle wrote: There is another holistic doctor who has some reference to ammonia build-up, too. The doctor's from the mid-west - I forgot his name.
There is a lot to learn with even just the specific area of methylation that Dr. Yasko focuses on but methylation is huge. It would be great if we had a Dr. Yasko type doing research specifically for lyme patients but from what I've heard, many chronic lyme patients do seem to have many of the issues that Dr. Yasko has identified so that is a place to start.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hi Hoosiers, Glad the info was helpful and I appreciate knowing it was helpful, thanks! I think you did thank me for the PM I sent you.
Glad the appointment went well. I'm very interested in anything you find that helps with fatigue. Let's hope something helps. I've been working on trying to improve the krebs cycle but haven't seen huge improvements with that.
Fatigue is a huge issue for me and seemed to get much worse with IM ceftriaxone. I'm afraid to see what might happen with IV.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
This is from one of Dr. Y's sites... It's sort of the "for dummies" version.
It really seems to be getting into the area of epigenomics...
Interesting stuff! Thanks, Terry - Dr. Jernigan... I remembered it when I work up today.
By using a simple genetic test we can evaluate a specific area in your body.
The area we concentrate on is called the methylation pathway. This pathway in your body has ties to most major diseases including:
* Heart disease * Stroke * Cancer * Diabetes, * MS * Alzheimer's disease * ALS * Parkinson's disease * Huntington's disease * CFS/FM * Mitochondrial disease * SLE, neural tube defects * Miscarriages * Down's syndrome * Bipolar disorder * Schizophrenia * Repair of tissue damage * Proper immune function * The aging process * Autism
What is the methylation pathway?
Methylation acts as an on/off switch that allows the body to learn how to respond to environmental change.
It represents the only cellular pathway that effects both adaptability and structural integrity of the body. Like the simple water molecule, methyl groups are necessary for life.
This pathway is directly related to most major chronic conditions.
Using our knowledge of the methylation cycle, we assess your results and provide suggestions to help support a healthy body and mind.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
The lack of use of this powerful diagnostic technology highlights the need for adequate means to address the results of personalized genetic testing.
It is a travesty to have the ability to specifically identify genetic weakness, yet have this technology underutilized out of fear.
It points to a dire need for therapeutic technologies that take advantage of this same genetic information with an eye toward personalized treatment or nutritional supplementation, rather than simply personalized diagnosis.
It is essential to take advantage of the strides that have been made in the human genome project not only to understand underlying genetic susceptibilities but also to successfully deal with chronic health issues. (8)
The beauty of nutrigenomic testing is that it focuses on weaknesses in known, characterized nutritional pathways. Knowledge of these pathways lends itself to providing nutritional "bypasses" for genetic mutations.
Nutrigenomics integrates concepts in molecular biology and genomics to study the ability of foods and nutritional supplements to interact with genes to influence health and lower the genetic risk component for multifactorial disease. (9)
This field of nutrigenomics is perhaps best described by the group that is dedicated to promoting this new science of nutritional genomics.
According to the National Center of Excellence in Nutritional Genomics at UC Davis, "The science of nutrigenomics seeks to provide a molecular understanding for how common dietary chemicals (i.e., nutrition) affect health by altering the expression and/or structure of an individual's genetic makeup.
Just as pharmacogenomics has led to the concept of "personalized medicine" and "designer drugs," so will the new field of nutrigenomics open the way for "personalized nutrition."
In other words, by understanding our nutritional needs, our nutritional status, and our genotype, nutrigenomics should enable individuals to manage better their health and well-being by precisely matching their diets with their unique genetic makeup."
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic