posted
I'm making slower progress than my doc would like, so she is testing me for the mutation.
It'll be a few weeks before the results come in, but in the meantime I'm doing a little research.
Here are the symptoms that caused her to test for it:
-I am VERY sensitive to ALL medications. I have always taken the child's dose; any more than that makes me have signs of overdose or bad side effects.
-I am making some good progress in treatment (Lyme and Bartonella), but not as much as we would like, seeing as how I started treating 2 months after symptoms started.
-Whenever I up the antibiotic dose, I herx like crazy for at least a month. Also, I can't take more than half of the prescribed dose of abx without getting very sick.
-If I stop exercise for a few days, then start up again, I feel like I have the flu.
-Even before Lyme + Bart, if I got a massage after a long period of no massages, I'd feel flulike the next day.
Again, I haven't tested postivie yet, but a positive would explain a lot! My Mom has always called me "the Princess and the Pea" because I am sensitive to EVERYTHING.
She mentioned Chlolesteramine (sp?) as the primary treatment. Do you guys take that?
Posts: 330 | From TN | Registered: Sep 2011
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nefferdun
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I tested heterozygous for the C677T mutation. I have had migraines and insomnia since I was a child. I was always tired. I believe I had ADD. My daughter was diagnosed with it as an adult. I had two miscarriages.
This mutation causes hypercoagulation which I have. That is a very big problem because it makes it difficult for the drugs to penetrate into the tissues or to detox everything out. Your body is not as well oxygenated which Bb loves. It is associated with chronic fatigue and brain fog.
I am also very sensitive to drugs but I can tolerate them as long as I don't get too aggressive. After awhile though, I develop a sensitivity and have to take a break.
I got tendonitis from Levaquin after which I could not tolerate any drugs for 8 months. I suddenly developed an allergy to Zitho. A doctor told me years ago to take Bendryl for the insomnia and after awhile I became so sensitive to it I cannot take any antihistamine. It makes me very nervous.
I could never tolerate coffee or alcohol. I guess I just don't detox it out of system the same as other people. I am hyper alert. I have to sleep with a fan on to drown out any noise.
I have not heard of chlolesteramine. I just started methylated vitamins on my own. They seem to be working because I am sleeping better. The doctor I saw is $400 for a phone consult and refuses to give me abx so I have not spoken to her about the results of my tests - yet.
You should ask your doctor to do blood work for hypercoagulation. One LLMD says 90% of his patients have it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
My daughter has one copy of C677T gene. She also had very high B12 levels last year. I think this is a piece of the puzzle (apparently high B12 is due to deficiency of folate and she isn't metabolizing B12 efficiently).
She has been on extra detox supplements for a month. She has been on Cholestyramine for several months. Also added this month was Rifampin for Bart. She has certainly had increased sweats. I attribute this to better detox or a bart herx. Anyway, I know something is happening.
She has continually felt nauseous. Even before Lyme diagnosis, I always thought she was "toxic."
Cholestyramine works like a binder and is used a lot for neuro lyme and commonly used for mold sensitivities too.
Neff, What is blood test for hypercoagulation?
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Cholestyramine is very important but many cannot take 4 scoops. Many take one a day...a great sight for MTHFR is MTHFR.net
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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posted
Where do you get tested for the gene mutation, and how much does it cost?
Posts: 250 | From canada | Registered: Oct 2007
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nefferdun
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Sick, the test that showed my hypercoaglation was a high thrombisis antithrombosis complex.
Annelet, you can ask any doctor to do the test. It is sent to the Mayo clinic and costs about $150. I did not have to pay for mine as medicare covered it but that is what I have read. Don't rely on any doctor to be competent about evaluating the results though.
I am going to search cholestyramine. I sure hope I don't need it. I don't know how I can squeeze another supplement in!
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Welchol is an alternative to cholestyramine(CSM) and is often better tolerated. I found 4 scoops of CSM rendered me suicidally depressed after 4 months--I guess my cholesterol became way too low(I have low normal cholesterol levels to begin with). Both are Rx.
Posts: 226 | From Princeton | Registered: Oct 2010
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posted
Thank you..... but I am in Canada, so I will need to get it done at some kind of private lab? Any suggestions?
Posts: 250 | From canada | Registered: Oct 2007
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posted
I get very confused between the solution to the MTHFR mutation and the solution to KPU--especially if you suspect both conditions. Even if you only have one, why can't you just take a high dose B complex vitamin(the bioactive form) and some zinc, and have all your bases covered?
I'm sure it's more complicated and hopefully someone with more knowledge than I will chime in.
Sue
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nefferdun
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The best place to get your answers is mthfr.net. This was a real eye opener for me. There are two mutations 677 and 1298. Look up the differences. There is a place where you can ask questions too and you can consult with him after you are tested for a fee.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
That site is the best because this doctor and his family live it !!!!
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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feelfit
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Actually there are about 30 gene mutations that can be tested for. MTHFR is just the tip of the iceberg.
If you look at Amy Yasko's work, you will see that this is much more than B vitamins and Folic acid...that is only one pathway..
If, like Nefferdun, you have problems with alcohol and coffee, this could be a mutation in processing sulfites- those of us who cannot tolerate glutathione fall into this category too.
the good news is that there are ways around these mutations and pathways can be opened by bypassing or using precursor supplementation.
Yasko's testing is 500 dollars and takes 10-12 weeks to complete. For those of us who are not able to tolerate meds or who become very toxic after a week or so, I think this may be a key issue.
5 years of heavy meds and I am not well. I see some improvement in the first week or so and then it is all downhill...diet becomes key also, when you know your blocked pathways, maybe low to no oxlates, amalates, sulfites.
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nefferdun
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Sulfites? Thanks feelfit.
I thought Yasko's tests were over $2000. Can you post a link for the $500 tests. I would sure like to get to the bottom of this. I will just pm you to be sure you get this. Very interesting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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feelfit
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for excellent information on the whole methyl cycle genomics.
Posts: 3975 | From usa | Registered: Aug 2007
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feelfit
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nope, 500.00. You send for the kit and it comes with finger prick stickers and a blood blot sheet. send it back and that's it. A lot of money, still, in my opinion, but it could be part of the problem for many of us who don't get well.
My test won't be done until the middle of May. And I am seeing the doctor in the article that I linked in the first part of June. I hope it leads to significant gains.
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sparkle7
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Comprehensive Methylation Panel with Methylation Pathway Analysis
the 495.00 panel
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feelfit
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oops, Sparkle, sorry, posting at same time.
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Tammy N.
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Does anyone know of anyone doing the protocols and actually seeing lasting benefits and results?
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feelfit
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Ralphi,
sorry, got caught up in this thread and didn't respond to your questions.
I know that I have one copy of MTHFR. However, I am being tested for 29 additional mutations.
My symptoms are slow digestion, inability to take most drugs for longer than 1-3 weeks before becoming severely toxic feeling. Turning red with wine, glutathione, etc.. Migraines. treatment failure.
Posts: 3975 | From usa | Registered: Aug 2007
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I don't drink alcohol, so I don't know if I'm sensitive to it; I just know that caffeine has always made me sick. I can do a square of dark chocolate, but more than that leaves me jittery and nauseated.
I've been doing some detoxing the past couple of days (couple of epsom salts/peroxide baths a day, dry brushing, lots of water, alka-selzer gold, slow movement) and get an hour or two of relief with each of those.
Posts: 330 | From TN | Registered: Sep 2011
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posted
this is all interesting and I'm calling my doctor tomorrow to see if I can get tested and if my insurance will cover it. I was wondering though, if phenylephrine(what they put in decongestant meds now) causes me to become extremely nervous...would a mthfr mutation be possible?
Posts: 287 | From somewhere | Registered: Oct 2011
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posted
Getting the yasko test done tomorrow.....
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feelfit
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Sk8ter- !!! hope that this yields some helpful answers for the both of us!
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nefferdun
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I just ordered the tests from the Yasko site. I also ordered one for my son, who has adult onset type one diabetes which is slow to kill his beta cells.
I am VERY excited about this. It takes up to three months to get the results back, which is a long time, but they give you specific recommendations to fit your specific results.
Buffyfan, don't go through a doctor. You may get one or two tests but not 30. Even if he did do more than two tests, he is not qualified to read them and tell you what to do.
For those that want to see what our results are before spending the money, I will report back on what I think - but that will probably be 6 months.
This is just so exciting to me - makes so much sense. The world has changed so much in the last hundred years. We are exposed to so many toxins- everything from the fillings in our mouths, to the junk food grown on depleted soil with chemical fertilizer, insecticides and herbicides, to the poisons released in the atmosphere from traffic and industrial waste.
As the doctor said, "we are the canaries in the coal mine". We are the ones getting cancer, auto immune diseases and chronic infections like lyme because we are the weakest ones with genetic mutations.
They say you have a genetic family history of this or that. . . Why? This explains everything. It is why my grandmother died of a sudden stroke at the age of 60. It is why my mother got dementia and diabetes. It is why there is so much alcoholism in my family. It is why I can't recover; can't take enough drugs, can't get them into the deepest tissues, can't detox.
No matter how many supplement I stuff down my throat, how many herbs or even the antibiotics, I have tolerated for over four years, Lyme remains virulent. It is like hanging off the side of a cliff and feeling my fingers slipping away. I need to look much deeper.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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feelfit
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well said nefferdun. I feel the very same way. this is the only logical explanation (for Me) as to why I have toleration problems, detox problems, etc. And, the reason I cannot get out of the rabbit hole.
I have to thank a good friend of mine (she has studied this stuff for 6 years) for educating me and opening my mind to this possibility.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
How does this differ from Dr S' Biotoxin illness research/protocol? and/or porphyria? Sounds very similar.
I do know that I have a CYP 2d6 enzyme deficiency and they used to test this using dextromothorphan. That sounds a lot more like porphyria. That may be why you cannot tolerate cold meds, Buffyfan.
For many of us who are not making progress, Biotoxin illness is also something that should not be ignored.
Someone in a previous post posted this link. It is truly an eye opener. Biotoxin illness isn't just about mold. It's about the body's inability to get rid of all toxins: mold, bacteria, medications, pesticides, etc, etc.
I am wary of a Dr (Yasko) who is not an MD, but a PhD and went to a natural health college that is closed and unaccredited. I don't think she is an ND either. I am always a bit leary about tests that are banned in certain states. Buyer beware.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Tammy N.
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I'm curious to know who was able to actually "crack their code" and get the rights supps.... AND IS SEEING LASTING BENEFITS. Anyone actually know of anyone who is SUCCEEDING in this area?
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feelfit
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posted
I'll happily report back my experience and outcomes, good or bad....
Aperture, skepticism is healthy. The Dr. that I am seeing for this is a MD cardiologist (linked above) and uses the Yasko test.
Dr. Yaskos credentials are extensive, I will post them, in her support. I'm not so sure that "MD" behind a name means much at all, considering what most of us have been through with them-
The people who have helped us the most, in fact, have been PhDs- Think Alan McDonald, Ben Luft.
anyway, Here are Dr. Yaskos credentials:
Dr. Amy Yasko, Ph.D., NHD, AMD, HHP, FAAIM Degrees/Certification * Doctorate Microbiology/Immunology/Infectious Disease * Registered Naturopath � Washington D.C. * Certified Alternative Medical Practitioner * Certified Holistic Health Practitioner * Fellow-American Association Integrative Medicine * College of Physicians-Certified Diplomat * College of Herbal Medicine-Certified Diplomat * College of Pharmaceutical Sciences-Certified Diplomat Education Albany Medical College of Union University * Dept. Microbiology/Immunology & Infectious Disease; Ph.D. � graduated Summa Cum Laude * Research � Antibiotic Resistance and Transport; Dean�s Award foxr Research Excellence Clayton College of Natural Health * Doctor Naturopathy; Graduated with Highest Honors * NHD � Doctor Natural Health; Graduated with Highest honors Colgate University * Hamilton, New York * Double Major � Chemistry and Fine Arts * B.A. � Graduated Magna Cum Laude Academic Positions Yale Medical Center Department of Hematology New Haven, Connecticut Fellow � Eukaryotic/Prokaryotic Drug Resistance Strong Memorial Hospital Cancer Center Rochester, New York Fellow � Mammalian Retroviruses Strong Memorial Hospital Dept. Pediatrics & Infectious Disease Rochester, New York Fellow � Bacterial Vaccines Industrial Positions Neurological Research Institute, LLC Director, Registered Naturopath Complementary & Alternative Health Care Holistic Health Consultants, LLC Medical Consultant Complementary & Alternative Health Care Serenity Corners Chief Medical Officer Complementary & Alternative Health Care Oligos Etc. Inc. Cofounder and Vice President Development of Nucleic Acid based drugs as anti-microbial and anti-inflammatory agents Biotix Inc. Cofounder and Vice President Development of automated DNA Synthesizer International Biotechnologies Inc. (now Kodak/IBI) Director of Research and Development Development of Molecular Biology Kits Honors and Associations 2004 CASD Award for RNA Research in Autism Who�s Who in the World Who�s Who in American Women Who�s Who in Science and Engineering Who�s Who in Young Professionals Who�s Who in Emerging Leaders Scientific Advisory Board-National Foundation Alternative Medicine (NFAM) American College for Advancement in Medicine Founding Member of National Integrative Medicine Council (NIMC) American Naturopathic Medical Association Society for Neuroscience American Nutraceutical Association Association of Drugless Practitioners National Center for Homeopathy American Association of Pharmaceutical Scientists Marion Foundation Association of Medical Diagnostics Manufacturers American Chemical Society � Division of Medicinal Chemistry American Society for Microbiology Life Extension Foundation New York Biotechnology Association New York Academy of Sciences American Association for the Advancement of Science National Association of Female Executives Sigma XI Research Society
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posted
Feelfit..you found a cardilogist who does her protocol? OMG ..Can you pls PM me their info...
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feelfit
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And, just to be clear, Yaskos work is with autism, not Lyme and associated diseases. I do not think that using this protocol will affect infections much at all. But it may help us detox and utilize drugs better.
I also do not think much of Yaskos supplements, esp. the RNA products- For me, selling a test, and then selling a remedy creates a conflict of interest. But tht is just my opinion.
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feelfit
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sk8ter- your box is full- Dr. James Roberts, toledo, Ohio. www.heartfixer.comPosts: 3975 | From usa | Registered: Aug 2007
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Of course, MD behind a name must be taken with a grain of salt.
However, I would expect someone who is recommending a protocol and selling a test to desperately sick people, to at bare minimum, have a degree from an accredited institution, not a closed one.
She may be a genius at deciphering the genetic code. However, there is a very real conflict of interest.
I stand by my skepticism. I got the info off of the resume, that you pasted,from her website as well. (I don't feel it was necessary to copy and paste her entire resume).
Does anyone know why is the test banned in NY? I am very curious about that.
MTHFR is a very real concern. I just have a problem with opportunists who benefit from people's suffering.
We are all on the same team.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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feelfit
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Many tests are banned in NY. or not available. They are mostly newer tests that doctors interested in Functional Medicine, Complimentary American Medicine (CAM) or Holistic practitioners use.
It is not because the tests are sinister or bogus, in fact, many tests that are useful for evaluating lyme and co are not available in NY.
Burrascanos new Borellia Culture test, for instance, is not available in NY. Is the geonomic test 'not available' or 'banned'?
I agree, and have stated, that there is a conflict of interest with Yasko providing a test, and selling remedies - huge conflict of interest. Yasko is not the only provider of Geonomic testing, there are other labs doing the work, but they only test for 8-11 mutations and cost about the same amount.
I think that all of us have a huge problem with opportunists who benefit from peoples suffering. And, yes, we are all on the same team, no doubt about that. Thanks for your healthy skepticism, Aperture, we should all investigate before proceeding with any out-of-pocket testing.
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I may have been a bit harsh in my assessment of Ms. Yasko. I have a son with autism symptoms who only started getting better with Lyme treatment from an LLMD/ND.
So, I am a bit sensitive on the subject of someone claiming to crack the code and all but cure Autism with nutrition and supplements alone.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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feelfit
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I understand, aperture. completely.
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Tammy N.
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Don't feel bad...a lot of people are skeptical of Yasko. My mother did some research that has caused me to be more skeptical. I may not have all of the facts remembered correctly so I don't want to share what my mother found because it may just be spreading base-less rumors. Good doctors can often be targets. I'm still very interested in Yasko's work and will continue to research and learn, and assess for myself.
I just wish this was easier to figure out and understand.
I'm most interested in learning about success stories, preferably from people we know.... like from here on lymenet, etc.
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nefferdun
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I went to a MD in Seattle and she gave me Yasko's site. She calls herself an LLMD but I don't think she knows how to treat lyme very well because she did not know what malarone is and she refused to prescribe anything. Although I asked several times, we couldn't get back on topic about the infections.
Although she is the person that directed me towards the MTHFR mutation, she did not give me any of the other genetic mutation tests. The way she talked I believe she became interested in this about 6 months ago. So she is not very knowledgeable in my experience.
I plan on making an appointment with a nurse practitioner who treats lyme and is one of the most well respected lyme doctors in the country. She can't even practice in a lot of states unless she is under the direction of a medical doctor. There are a lot of knowledgeable people that don't have medical degrees and many doctor that are worthless.
I do understand the skepticism. I can be very gullible but when I am duped I am also very noisy about it. The difference between these mutation and the far out things I have reached for is it has science behind it. My test for MTHFR was done at the Mayo clinic. The vitamins really are broken down into more absorbable forms.
I bought the simple protocol to try and it seemed to help. That is why I am doing more. I think it would be a good idea to just invest in something like the folate to see if you feel any better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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PS The danger in this is these people can treat online by phone consultation because they are recommending vitamins. It invites people into the market that don't really know much about what they are doing and just want to make a fast buck. You just don't know who you can really trust.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I was mentioning that she was not an MD or an ND because she uses the title Dr as part of her name. I wanted to make sure people didn't think she was a Medical Dr or ND, when she is actually a PhD.
I'm not wary of practitioners who are not MD's or ND's. I just took issue with her use of the "Dr" title, which can be misleading when someone is recommending treatments for medical conditions.
-------------------- aperture Posts: 551 | From Louisville, KY | Registered: Nov 2011
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Tammy N.
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Please read my new thread on Gilbert's syndrome. Important! Busy now and can't write more.
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I understand, aperture. completely.
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