posted
For those that watch their budget, the package that Immune pro sells is the identical products that Dr. Nathan sells out of his office. I like the idea of the B-12 lozenges versus capsules/pill also. When you add the phos. serine the total shipped to your house is 115.00 for immune pro versus 142.00 from the other site.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Bugg I haven't gotten the test results back yet. As I said I was jumping the gun with the diagnosis but as I had so many symptoms since early childhood I am positive I have it.
"The 677 variant is associated with early heart disease and stroke and the 1298 variant with a variety chronic illnesses. The MTHFR is reported out as heterozygous or homozygous. If you are heterozygous that means you have one affected gene and one normal gene.
The heterozygous MTHFR enzyme will run at about 55% to 70% efficiency compared to a normal MTHFR enzyme. If you are homozygous then enzyme efficiency drops down to 7% to 10% of normal, which of course makes a huge difference."
As you age things get worse especially when you are exposed to a lot of toxins which your body cannot get rid of. Diagnosing myself, I bet I have 1298 - I believe I am heterozygous and was assimilating at 55%. If I am homozygous, it is incredible I functioned as well as I did (before I got lyme) but it would make more sense that both of my children are affected (unless my husband also has defective genes).
I have read a lot of doctors dismiss the 1298 gene especially if it is heterozygous. This site tells more about the 1298 mutation and it's effects. This is what really rang a bell for me.
These are the first ten things listed that are improved in CFS patients and it startled me that almost everything mentioned I have always had or developed: 1. sleep disturbance - insomnia 2. thyroid supplementation 3. excess urination (especially at night) 4. low body temperature and low blood pressure 5. longstanding infection 6. decreased energy 7. brain fog, poor memory 8. hypoglycemia - I don't have this one 9. alcohol intolerance (also caffeine and drugs) 10. pain; headaches
Further down: extreme fatigue, intolerance for heat/cold, feeling stressed, not feeling like "part of the world" and inability to retain what you read. Do you know that CFS patients with this mutation have reduced killer cells? Their immune systems are compromised.
When you are wondering about which came first, the chicken or the egg - lyme disease or CFS - the mutation is something we are born with and I had the symptoms of CFS when I was a child.
When you are diagnosing, you look for the primary problem - the root of the condition. Is it lyme or is it the MTHFR mutation? Maybe our bodies cannot fight lyme disease without first addressing the mutation.
-------------------- 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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The fact he states it is beneficial is enough for me to add it to the mix.
Posts: 805 | From Utopia | Registered: Feb 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You know, it is so wonderful to see everyone pitching in their own information on this thread. Thank you!!!
History - We've had a sub-set of people over the years who were unable to take the antibiotic protocols that most now think are standard. Some would get so ill from trying to take what was prescribed they would want to die.... and unfortunately, many did- suicide.
People would often tell them to push through the bad herxes. Me, the queen of the big "sissy-babies" would tell them to stop the meds and let the toxins clear out, then start back SLOWLY!
I didn't know why some got so stinking sick and I had no "legs to stand on" scientifically, but I kept pushing the "sissy-baby" approach as being ok.
The ONLY doctor back then to support this way of thinking was Dr. C in Missouri. He is the first to say that too much is not ok if you get really sick- go slowly if needed.
He saved a lot of lives by coming out on that topic and standing his ground. I thanked him for his support and for helping many of our "sissy-babies" over the years.
For years though, we were both kicked hard by the non-MTHFR people for doing so, they just didn't understand, and that was reasonable because we didn't know why this was happening.
Anyhow... I think the BEST thing here is we've finally got an answer as to WHY some folks can do the protocols and why some can't. AMAZING!!!!
And it is good to know why some can take certain supplements and some can't. Each person is different.
Lesson for the day... If someone says they are too sick on a protocol- PLEASE do not push them to keep going. Herxes kill. And there is no reason for people to get so sick while treating- it can be dangerous.
I am thrilled for the folks who are learning about MTHFR and Lyme, et al, and doing better! You all are fantastic!
Just wondering if it would be a good idea doing methylation protocol, heavy metal/toxins chelation and treating HPU/KPU at the same time?
Any recommended chelation agents?
Some people with CFS also use magnesium to calm the nerves. What kind of magnesium is usually used? I read that transdermal magnesium chloride is best absorbed?
As for HPU/KPU treatment, I'm thinking about taking The Core by BioPure.
reply from RichVanK
I favor testing to see what the issues are first, if feasible.
If HPU/KPU is present, it will deplete several of the cofactor vitamins and minerals needed by the methylation cycle and related pathways, so if it is present, it will need to be dealt with before the methylation treatments would help.
Dr. Klinghardt reportes that in many of his Lyme patients, HPU/KPU treatment will automatically bring up the methylation cycle, but I'm not sure if that's true in all cases of ME/CFS.
If heavy metals levels are sufficiently high, they will also block the methylation cycle, so if present, they may need to be dealt with before treating the methylation cycle, too.
Magnesium glycinate is the best absorbed oral form of magnesium.
I urge you to work with a physician who is knowledgeable about these aspects, because there can be serious adverse effects in some cases when these things are treated.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
Wow, now I'm thinking I need to get my children tested for this blockage.......
Thank you for this thread--possibly another piece to solving the puzzle.
Posts: 648 | From northeast | Registered: Feb 2009
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springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
"I urge you to work with a physician who is knowledgeable about these aspects, because there can be serious adverse effects in some cases when these things are treated.:
Has anyone who just did the treatment on their own without tests or guidance have any issues or side affects that they want to share and warn others about?
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Rich responded to one of my posts on the yahoo site for MTHFR. He wrote that what I got is no longer used and you should get the following supplements instead. The manufacturer changed something in one of the products. This is from his post.
SUPPLEMENTS
1. General Vitamin Neurological Health Formula [2]: Start with � tablet and increase dosage as tolerated to 2 tablets daily 2. Hydroxy B12 Mega Drops [3]: 2 drops under the tongue daily 3. MethylMate B [4]: 3 drops under the tongue daily 4. Folinic acid [5]: � capsule daily 5. Phosphatidyl Serine Complex [6]: 1 softgel capsule daily (or lecithin, see below)
GO SLOWLY. As the methylation cycle block is lifted, toxins are mobilized and processed by the body, and this can lead to an exacerbation of symptoms. IF THIS HAPPENS, try smaller doses, every other day. SLOWLY work up to the full dosages.
Various patients reported some early exacerbation of symptoms, which in most cases was followed by a greater improvement in symptoms. Three of the patients found it necessary to decrease their dosage frequency to every second or third day for several days, until they could tolerate the full daily dosage schedule.
Sixteen of 30 patients (53%) reported an initial worsening of symptoms, beginning in most of these cases within 3 or 4 days, but in some cases beginning at up to 2 weeks.
Most of the symptoms were mild, and none of the patients discontinued usage of the supplements during the first 3 months. The most common side effects were gastrointestinal (pain, cramps, constipation, or diarrhea), reported by 6 out of 30 patients or 20%;
increase in pain, reported by 4 out of 30 or 13%; and increase in fatigue, reported by 3 out of 30 or 10%.
Other symptoms, reported by one patient each, were a decrease in appetite, poor sleep, weak legs, flu-like symptoms, and an increase in anxiety and depression.
For those who experienced improvement, the time to self-reported improvement on protocol was an average of 5.6 weeks, with a range from immediate improvement (which was rare) to to as long as 8 weeks before improvement was experienced.
-------------------- 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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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I'm very happy to be following this thread. I think this is BIG. I'm just taking the few things (as I listed above) per my appt. with Dr. K. And I'm feeling good. I would like to look into the other supps listed above as well. Thanks for all the links listed above..... lots of research for me to catch up on! This is all very exciting. I have not felt this encouraged in as long as I can remember.
Best to all! Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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quote:Originally posted by Tincup: You know, it is so wonderful to see everyone pitching in their own information on this thread. Thank you!!!
History - We've had a sub-set of people over the years who were unable to take the antibiotic protocols that most now think are standard. Some would get so ill from trying to take what was prescribed they would want to die.... and unfortunately, many did- suicide.
People would often tell them to push through the bad herxes. Me, the queen of the big "sissy-babies" would tell them to stop the meds and let the toxins clear out, then start back SLOWLY!
I didn't know why some got so stinking sick and I had no "legs to stand on" scientifically, but I kept pushing the "sissy-baby" approach as being ok.
The ONLY doctor back then to support this way of thinking was Dr. C in Missouri. He is the first to say that too much is not ok if you get really sick- go slowly if needed.
He saved a lot of lives by coming out on that topic and standing his ground. I thanked him for his support and for helping many of our "sissy-babies" over the years.
For years though, we were both kicked hard by the non-MTHFR people for doing so, they just didn't understand, and that was reasonable because we didn't know why this was happening.
Anyhow... I think the BEST thing here is we've finally got an answer as to WHY some folks can do the protocols and why some can't. AMAZING!!!!
And it is good to know why some can take certain supplements and some can't. Each person is different.
Lesson for the day... If someone says they are too sick on a protocol- PLEASE do not push them to keep going. Herxes kill. And there is no reason for people to get so sick while treating- it can be dangerous.
I am thrilled for the folks who are learning about MTHFR and Lyme, et al, and doing better! You all are fantastic!
- Yes, indeed!
I really think I have this problem. My internal med Dr is checking this out for me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
The doses came and my son started.He had a slight fever hot ears and face blush ( not temperature) and is the pulling of toxins in the frontal lobe.He felt the change right away and he is just in small dosage.He said I feel like pulling feeling in my frontal lobe.
I gave him in empty stomak .I was happy it work right away.
Posts: 1379 | From disable | Registered: Aug 2011
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posted
Couple of questions,please. What is the name of the test done by Quest or LabCorp? And does high folate level in the blood mean you have MTHFR or don't have it or irrelevant? Thx!
Posts: 70 | From U.S.A. | Registered: Dec 2008
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
My queston again, do we continue all of our Dr. B vitamins also ?
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Manybites, don't give your son too much at once. It is recommended to cut them up when you start. Look at the directions. I think you are supposed to take them with food.
But I am glad he feels it working. Most people do not respond so quickly. It can take 8 weeks to see improvement. Just like lyme, there can be some discomfort when starting because of the detoxing so go slow.
Tonglen, the levels of folate, B12 in your blood does not reflect how much of it your body is utilizing. This mutation means your body cannot convert those vitamins to their usable form so no matter how much you ingest in food or normal supplements, you remain deficient. That includes B12 shots.
It does not matter where you get the test for the mutation done.
Yes, you continue taking the supplements recommended by Dr. B. The doctor I saw thinks Dr. B is the best. She mentioned Reishi mushroom and also transfer factor but said she would tell me what supplements to take when the test results are all back. I started taking these on my own.
-------------------- 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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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sorry but did i miss something? what's mthfr or something???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Yes I did give him a quarter.will see tonight.
Posts: 1379 | From disable | Registered: Aug 2011
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fflutterby
Frequent Contributor (1K+ posts)
Member # 28081
posted
Interesting post about HPU above.
"Dr. Klinghardt reportes that in many of his Lyme patients, HPU/KPU treatment will automatically bring up the methylation cycle, but I'm not sure if that's true in all cases of ME/CFS.
If heavy metals levels are sufficiently high, they will also block the methylation cycle, so if present, they may need to be dealt with before treating the methylation cycle, too."
Neff, do you have mercury fillings or high mercury? Have any of you on the protocol been tested for HPU. I have some Core here and maybe I should start this first ?
I do have elevated mercury but have mercury fillings. So I cannot chelate
-------------------- Psalm 46 1 God is our refuge and strength Posts: 1367 | From North Jersey | Registered: Sep 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have a mouth full of amalgams but the test I had done in 2010 said my blood levels were within normal.
The doctor said she is doing more tests for mercury etc. She said you cannot tell by the blood alone because it will be in the tissue. She said there is no question the amalgams leach mercury.
Altogether, I had 33 vials of blood drawn so I hope something in there will clarify what is what. I am still supposed to send in saliva and urine.
They would have to put me under to get all these filling out and replaced with composite ones. My son who just started dental school said composite fillings shrink and sometimes large ones will fall out. He said there have been no studies to confirm the safely of composite fillings so if you don't have elevated mercury it is best to just leave the amalgams alone..
-------------------- 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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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
springshowers- I think there are alot of people who do this on their own, especially in the CFS community. Rich VanK is a PhD. (not an MD) so I would think that he doesn't want to see people get really ill & blame him. All of this is experimental - so no one knows for sure what each individual will experience.
---
It's a tricky issue with the mercury fillings. I've had composites for a long time & they are fine. They can be toxic, too. I posted a list of materials & they can cause problems in sensitive people. There's a list on the parasite doctor's website (the MD who practices in AZ).
Some people got them removed & had little change in theie health problems. Some people felt better. If you have alot - it may be better to just get one out at a time & let your body detox rather than doing a whole bunch at once.
I still have 2 remaining. It's probably best to get them all out before trying to chelate. I read something on the NDF Plus website & it says you can use their product with fillings if you put the drops way in the back of the throat.
All of this detox takes time. I think it's better to take it slow & don't rush it. It's a process. It took all of these years to get toxic so it can take time to reverse it all.
I guess the best thing to do would be to get the KPU test first & work on that if it's an issue. I don't know if it's a good idea to do both - particularily at the same time. I dowsed it a number of times & for me - I'm going to try the glutathionine methylation protocol first.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
Be sure to scroll down to methylation and the immune system.
-------------------- 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
Nefferdun, I am so happy to hear your feeling much better!!
Reading through the thread, I just wanted to remind everyone about potassium levels. When the methylation cycle comes up, potassium will fall and can become dangerous. You can read about the potassium issues, at PhoenixRising.com, a CFS/ME forum chock full of info about methylation and the two protocols, including RichVanK's.
Laurie
-------------------- �Never doubt that a small group of thoughtful committed citizens can change the world; indeed, it�s the only thing that ever has.� Posts: 149 | From Kansas/Missouri | Registered: Aug 2008
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posted
Neff,are you still feeling "great" like when you first posted. Keep us up to date on how you are feeling.
Posts: 805 | From Utopia | Registered: Feb 2006
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posted
Yes Neff, wondering how you're feeling? Still "great" I hope. Keep us posted. Sounds like you might be going to see the LLND in Seattle we PM'd about; hope it's helpful for you. TS
Posts: 566 | From West Coast | Registered: May 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am doing about the same. I feel better than I did before quitting the abx but symptoms are sneaking back. In the evenings I have pain in my calves. It is not really bad but worries me. At night I have woken up a couple of times sweating.
I am not on any anti-malarials or abx but I am going to start a round of Coartem tomorrow. I was having mild headaches but they go away without any medication now. Some of this is probably detoxing. My eyes do not seem as dry and irritated.
I emailed the doctor requesting she hurry up our consulatation and she said she would call the lab to try to speed up getting the rest of the test results. After I talk with her, I will know a lot more.
I am not getting the symptoms back of depression, anxiety, extreme lack of motivation, sharp pains, cramps, overwhelming fatigue, dizziness, inability to concentrate etc. But in the past, things seemed to sneak up on me, especially the mental changes, so I don't feel completely safe not having any drugs. My last CD57 in October was 37 - very low and obviously infected.
I am taking a huge amount of supplements - not just the ones for the mutation. I am probably over zealous. The doctor did so many tests she should know exactly what I need to take.
If I did not develop any more symptoms than what I have now, I could get by for a long time and call myself well enough. If my legs quit aching at night and if I developed more stamina and eagerness to do things, I would say I was in remission - cured.
I hope these supplements will help my immune system stay on top of the infections better. In the past I always reached a point of intolerance to abx when the side effects were worse than the lingering infections.
I was forced to quit treating relying on herbs to get me by but I always relapsed - the first couple of years with a new infection I had not been treating. Then last fall it seemed to be the return of borellia and bart that was dormant rather than dead. I fall back into the pits of lyme, sometimes slowly, sometimes quickly.
So my hope is treating this mutation will help me be able to tolerate whatever drugs I need to get myself into remission. It will strengthen my immune system. It will help me detox the years of accumulated garbage that is causing me to decline mentally as well as physically.
And it might even change my life so much that I feel better and more normal than I ever imagined. That would not be such a stretch as I am sleeping better for the most part. I wonder what I have been missing all my life.
What would it have been like to have known about this when I was young so that something as simple as falling asleep could have been easy and natural. I could have taken my children on vacations, celebrated New Years and just lived feeling refreshed and ready for every new day.
It is not just about Lyme disease. It is much more.
My adult kids just started the vitamins. I am anxious to see how they feel in a month or so. As soon as I talk to the doctor I will update this.
-------------------- 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 have been following this thread and I am so happy you are feeling some improvement. My daughter just got results showing she has one copy of C667T. I printed off article above and will add it to my reading!
Posts: 312 | From Utah | Registered: Nov 2010
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posted
Nefferdun, Will you or have you had your kids/family tested?
Posts: 312 | From Utah | Registered: Nov 2010
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Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
neff - I am so glad you are still feeling better! I think that is HUGE.
Regarding the legs -- try to start some exercising. I think walking would be best, at least 20-30 minutes at a clip (really work at building up to that). I think bringing good circulation into your body will bring you to the next level and will possibly alleviate the leg issues.
Keep on going! You are doing great!
Posts: 2238 | From East Coast | Registered: Jul 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
will somebody please tell me what "mtwthf" stands for? is it a brand or what???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
re: I wonder what I have been missing all my life.
I can relate to that... I often wonder why we have to go through all of this.
Anyway- trying to be positive. I got all the supplements today & I started the protocol. I guess I'll see where it goes.
The official name of this gene is �methylenetetrahydrofolate reductase (NAD(P)H).�
MTHFR is the gene's official symbol. The MTHFR gene is also known by other names, listed below.
Read more about gene names and symbols on the About page.
What is the normal function of the MTHFR gene?
The MTHFR gene provides instructions for making an enzyme called methylenetetrahydrofolate reductase. This enzyme plays a role in processing amino acids, the building blocks of proteins.
Methylenetetrahydrofolate reductase is important for a chemical reaction involving forms of the B-vitamin folate (also called folic acid or vitamin B9). Specifically, this enzyme converts 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate.
This reaction is required for the multistep process that converts the amino acid homocysteine to another amino acid, methionine. The body uses methionine to make proteins and other important compounds.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thanks. Dumb me. I thought it stood for Monday Tuesday Wednesday Thursday and Friday......lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Would it be reasonable to think that a sublingual b12 and folic acid supplement could help a bit even though it's not the complete and specific protocol?
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thanks. Dumb me. I thought it stood for Monday Tuesday Wednesday Thursday and Friday......lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by gigimac: Would it be reasonable to think that a sublingual b12 and folic acid supplement could help a bit even though it's not the complete and specific protocol?
I would think that would provide very very little help for those with the gene problem. If you have limited availability to convert the regular folic acid, then supplementing with more of the regular folic acid doesn't sound like it help too much.
Posts: 1927 | From se usa | Registered: Mar 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am with you randibear! I won't say how I trained my mind to remember it.
sparkle you are so smart! I am still struggling to figure out what in the heck is going on with this mutation.
Walking is a good idea. I think I should take a walk right now. My fingers have done the walking for way too long.
But before I get off my rear end, I want say I just ordered the parts to finish our stairs. I was afraid to do it. I thought it would overwhelm me trying to figure things out. I couldn't even decide what I wanted. It has been ten years and now we are finally going to have a railing - and newel posts - and balusters - it will be all done - at last!
I have the mental, physical and emotional energy to do this (that is supervise my husband doing it). I finally can remember what part is what. I watched a video and decided it is not really all that hard to do.
By the way I got Perque activated B12 yesterday, which has 33,330 percent of the B12 you need. Nice.
-------------------- 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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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I'm not that smart - I just google things...LOL.
I tried just the folic acid a while ago to see if it would help & it didn't do much. I think you have to do the whole protocol.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
I was hoping maybe there was a cheaper way to just give it a try but maybe I can get the money for the testing one of these days.
Considering how horribly I herx it seems like mthfr mutation could be a problem.
Posts: 1535 | From Greensboro NC | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
thanks. Dumb me. I thought it stood for Monday Tuesday Wednesday Thursday and Friday......lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I think it's working for me. It was too much - actually. I must be one of those people who are sensitive. I woke up with a headache & I felt like someone hit me in the back with a 2 X 4... I started with the low dosage, too. I think I'm going to do it every other day & work it up slowly (as per dowsing).
I'll keep you posted...
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
do you think everyone with lyme should get tested for this?
oh, and when I see MTHFR, I think of mother f'er, haha.(if anyone is offended by that, I'll remove it)
Posts: 287 | From somewhere | Registered: Oct 2011
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It would take a lot to shock and offend me. I think your comment is hilarious. Considering I feel like crap, I appreciated the humor, thanks!
Completely unrelated....my friend's young son with LD and company has a port; they also have 3 small dogs, one of which is a Dachshund...her son's "screen name" when he plays computer games is, "Wiener with a Port." Funny!
Sorry moderators, remove this if you have to! TS
Posts: 566 | From West Coast | Registered: May 2008
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quote:Originally posted by BuffyFan: do you think everyone with lyme should get tested for this?
oh, and when I see MTHFR, I think of mother f'er, haha.(if anyone is offended by that, I'll remove it)
Actually that is appropriate for anything associated with our illness..the MTHFR gene disorder
I started it last night and it did make me sleepy as was mentioned. Had very slight headache but noticed last night and today I had good color in my face. My serine has not come in yet but it is optional so I went ahead and started protocol. Good stable energy today and that's my report.
Posts: 805 | From Utopia | Registered: Feb 2006
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Anyone with the CBS upregulation may find that they feel worse either over the long term or right away. That is because you will be making more toxins for your body to deal with as you try to supply your body with the methylation nutrients that some of you are taking.
Yasko talks about this quite a bit as do others. Most doctors who treat the methylation issues as a side issue seem to be missing this piece and don't test for it and don't seem to know about it.
http://www.heartfixer.com/AMRI-Outcomes-Non-CV-Autism-Methyl%20Cycle.htm "The CBS up regulation �pulls down the drain� all methyl cycle intermediates, generating ammonia and sulfur breakdown products. We must control this defect before we aggressively supplement you with methyl cycle intermediates; otherwise the intermediates will �fall down the drain�, aggravating your condition."
I wanted to make those of you who are supplementing for this aware of this potential problem. If you want to know more please go to Yasko's site and read. Even doing a search on the internet should yield some answers. There are lots of posts in the archives with links to yasko and other groups that talk about methylation.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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sparkle7
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Thanks Terry!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
This thread on another message board discusses the CBS upregulation -
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