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
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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!
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randibear
Honored Contributor (10K+ posts)
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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
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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)
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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
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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: 1534 | From Greensboro NC | Registered: Aug 2011
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randibear
Honored Contributor (10K+ posts)
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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
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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
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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
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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
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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: 1534 | From Greensboro NC | Registered: Aug 2011
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randibear
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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
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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
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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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posted
Thanks Terry!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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sparkle7
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posted
This thread on another message board discusses the CBS upregulation -
posted
As TF mentioned, Spectracell is an amazing lab.
I had testing done with them this summer.
Another great lab is Genova. They do a test called NutraEval.
I take a B Vitamin Complex by Xymogen for the MTHFR mutation. It's called B Activ. Good stuff.
Posts: 77 | From Denver | Registered: Feb 2012
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canefan17
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3. The best methylation test (the one we used in our study) is simply called a "methylation panel" from Vitamin Diagnostics Lab in New Jersey. [Now Health Diagnostics and Research Institute, phone 732 721-1234].
It runs about $325 for 11 measures of methylation chemistry, so it would be cheaper to just start the protocol, which is what I advise. I don't typically order the panel unless the patient is not responding to it adequately, so we can figure out what they are missing.
-----
Note - this test is not a genetic test. It tests for levels of various vitamin/nutrient levels in the body to see how methylation is occurring. It's a little different than the Yasko test.
It was the one Dr. vanK recommended.
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