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Needing help with MTHFR and how to correct it

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Posted 8/21/2015 2:03 PM (GMT 0)
Hello Everyone, let me begin by saying this whole Lyme thing is totally confusing, at least to me. But I have been fortunate to have met two very nice people who are helping me with this. Due to personal reasons I am unable to begin actual treatment till middle of September and in the meantime I have been trying to detox my body using the foot soaks, charcoal tablets and coconut oil pulling. However, I have been doing this now for almost 3 weeks on a daily basis and wake up feeling horrible. It is almost unbearable, but definately wearing me down. These two wonderful people whom I have met on this sight have suggested that I try the DNA test to see if I have some gene mutation which might be hindering my body from expelling these toxins. I think it is a great idea, however, I am asking others who have done this DNA test and implimented it in their Lyme treatment to tell me of their experiences with it. As I understand it, I will send a sample saliva in to this company and they give me numbers which I then go to a website and "plug them in" and find out if I do have a gene mutation. Also, if there are people out there that have had trouble with this detox, Id love to hear from them as well. I did just order that Alka Seltzer Gold online yesterday, hopefully that will help.

Looking forward to hearing from others who have done this method and their experience. Thanks to all of you.
Posted 8/21/2015 6:35 PM (GMT 0)
Badd302 - I haven't had the MTHFR gene testing done, yet. But, if you get it done, and go to one of the websites and 'plug in ' your results...you will get advice on what to do.


Regarding detox: Are you doing full epsom salt baths, or just foot baths?
You could also dry brush your skin - if you only do showers, then you could dry brush before the showers.
Are you drinking 8 glasses of water daily? Adding in some fresh squeeze lemon juice to some glasses?

Have you cleaned up your diet?

Just a few ideas to help you detox.
This will bump the thread back up - so others with more knowledge about the MTFHR gene testing will see it.
Posted 8/21/2015 7:04 PM (GMT 0)
I have a milder MTHFR mutation - one that many people have. These mutations can make it difficult to detox. There might be others and I'm hoping other members here can chime in.

LabCorp runs the MTHFR tests and maybe some of the other large labs do as well.

I'm hetero for the C677T mutation which means my body is not able to process folic acid nor the common forms of B vitamin supplements.

So, I take a methyl folate supplement along with methyl B12 and an activated (methyl form) B complex.

MTHFR testing is obviously simpler than the DNA testing that requires analysis.

Girlie read my mind re detoxing and I'll add the suggestion that you consider a cold rinse at the end of your shower. This causes blood vessels to constrict which, in turn, gets lymph fluid moving. Our lymph system is one of the larger detoxification systems in our body and moving lymph is a manual process (exercise helps a lot with this as well).
Posted 8/22/2015 12:57 AM (GMT 0)
Thanks to both of you who responded. Girlie, I am doing the foot baths each day, not baths. And no, I guess I havent cleaned up my diet, I really didnt know what to change. Hey folks, I am new to all of this. I am just learning about all that is involved and let me tell you, there is allot! and I am working on drinking water each day. I know I drink a 16 oz water when I take my charcoal tablets. I try to do more through the day, but honestly, I am trying to like water. LOL

And cd3764, I think that is a great idea about Labcorp, we have one in our area. But will I have to have a doctors prescription like I always do when I have lab testing done? Would you know if it is cheaper? Im assuming that is where you went and thank you for the example of the types of things I might be told. Do you have a doctor tell you what to take after you found out what you were deficiant in or rather mutated? How did you find it out and did you do the suppliments in a certain order? I was told that it should be in a certain order, which would mean I would have to get a doctor to kind of prescribe a certain protocol for me, based on this information. Did you feel better after you got these results and took the neccesary suppliments to help with your body to detox? Wow, I am all questions tonight. LOL

Hey, I totally appreciate all this information. I have always said, who knows better the condition than those that have it. You guys live with this and deal with all the problems. I appreciate all these tips as I am thankful that I finally figured out why I am having all these crazy things going on in my body. Now, I can fix it.

Thanks again to both of you, looking forward to hearing from you again.
Posted 8/22/2015 1:17 AM (GMT 0)
I was told to quit eating dairy, gluten, sugar and no alcohol. Drink 8 glasses of water per day and add fresh squeezed lemon in it. Eat as much organic fruits and veggies as possible to cut down on pesticides. I even went to the farmeRs market for my meat or buy organic at the store or I usually won't eat it. I also make my own Kombucha tea which is a great detoxifier.

I also have the double 677 mutation that cd has and take the methylfolate and methyl B-12. And I can't say I notice a difference.

It took me 15 yrs to get diagnosed, I took herbs and antibiotics for about 18 months and felt much better, but you will feel worse before better and then I started doing bee sting therapy and it is way better and I've seen faster results in 2 months then the past 18 and I've quit doing my anx and sometimes do herbs.

Sorry you have Lyme and hopefully you will feel better soon.
Posted 8/22/2015 1:30 AM (GMT 0)
Wow, thanks Revive.....So you dont really feel any different after you took the suppliments according to your mutation? Ok, good to hear, this way I have a real idea about this. Bee sting therapy? Oh wow, I saw that on TV once. OMG, i cant imagine how getting stung over and over, that must hurt too. Right now, I do not like bugs. ANY bug. LOL Even flying ones.

Revive, you put allot of things in there not to eat. Oh, I get the fresh veggies without pesticides, only makes sense. The hard one I see is sugar. Alcohol, no problem, I really dont drink anyway. And I do know I am going to get worse before better, before I took the Blot test, I took the oil of oregano "just to see" if I had a reaction and boy did I. And Im sure it is nothing compared to what I have coming up once I begin treatment, probably antibiotics. Thats why I was wondering if everybody had trouble with the detoxing as that is all I am doing right now. I have cut back on the time to try and level off here, as I am told I am not getting rid of all the toxins. But I am really pretty weak, which is bad.

You said it was 15 yrs to get diagnosed? Wow...did you have any type of idea this was what it was? For me, I have been bit twice in my life, once when I was like 10 years old and one this past 2013. I have experienced weird things, like RLS, which just appeared and then disappeared like it arrived. And swallowing, I have difficulty swallowing yet have had it medically checked out, there is nothing wrong with me. These are examples of the weird things, but I have had painful things, like bakers cysts in both knees and other. It wasnt until I had surgery in February and began vibrating in my chest and arms jerking, but only when I was resting and sleeping. That was such a weirder than usual thing, that lead to the Lyme and the rest is history. So I guess I have had it, just didnt realize it until now. But I am very thankful that I found out now so I can get treatment and feel better. I have hope and appreciate all the people I have spoken to about Lyme.

thanks again for responding.
Posted 8/22/2015 2:47 AM (GMT 0)
If you have the MTHFR mutation, try bio available B-vitamins and folic acid. Glycine also helps.
Posted 8/22/2015 12:41 PM (GMT 0)
My insurance dictates that I use LabCorp. My health insurance policy covers lab work 100% so I was thrilled to learn that LabCorp does MTHFR testing.

My LLMD told me that he ran the test more out of curiousity because the topic is just starting to get attention in the medical world.

When he saw my results, he just told me to increase my intake of green leafy vegetables (for folate).

I'm the type of person to research stuff like this and I made the decision to switch my supplements to the methylated versions. I never heard nor read about the need to start the new supplements in a certain order.

This site has good info on the MTHFR mutations:

mthfr.net/

I, too, didn't feel any different but, who knows what's going on behind the scenes? I've made so many changes to improve my health with Lyme that I think feeling better is a collective result.

I've always believed in making small, liveable changes - this way it's easier to have them become habits.

Best of luck to you moving forward! We're here for you whenever you need us for information and/or support.
Posted 8/22/2015 1:56 PM (GMT 0)
The methylfolate after I took it for a few weeks actually started making me feel nauseous and weird and it was the only new thing I started so I backed off a few days then started doing half and slowly worked up to the 10mg.

When your so sick anyways I really don't think you can tell if your detoxing right.

Back when I got Lyme, I was tested through Labcorp and I was negative, at that time I wasn't aware the testing wasn't accurate so I thought Lyme was ruled out plus my joints didn't hurt, it was more like my muscles hurt.

I rode horses all the time so could of very well had a tick but never saw it. I do remember picking a ton of them off my horse one summer. Or could have come through a mosquito.

When I first got it, I had the flu and never pulled out of it completely. I was exercising a lot and my muscles would cramp and my heart raced and I thought I was going to kill over. Then my neck started hurting and getting stiff all the time, I felt like someone beat me with a bat or something. Then I had the swallowing issues like you plus I choked a lot. I've had about 50 symptoms over the time period but more like fibromyalgia.

Bad when you do start treatment, just start slow and easy, if you herx then back off a few days till you get over it. Several people had to start out with just detoxing before the treatment began.

Good luck with everything and keep us posted on your progress. Glad you found this forum, it has helped all of us since most outsiders can't relate to what we go through.
Posted 8/22/2015 3:38 PM (GMT 0)
The diet has been a tough one for me. I always ate what I wanted, as I never had a weight issue. I was teased at work - because everyone would be turning down the treats (baking) that were sometimes brought in...and I would eat more than my fair share.

So, maybe do a gradual switch over - re: diet. Sugar is the big one. Start with one, and build on it.

I have gone gluten free, milk free (still eat cheese sometimes), sugar free for the most part.

I eat a lot of fruit and veggies and healthy protein.

I am not strict - meaning I do indulge - I do have a treat now and again (some dark chocolate, a cookie)and even a little gluten slips in to my diet when I'm away from home.

I think for me the simple carbs is the one place I need improvement. I still eat pasta (gf) and I made gluten free crepes yesterday.
Posted 8/22/2015 9:16 PM (GMT 0)
I take the same suppement as CD does for it
Posted 8/23/2015 2:24 PM (GMT 0)
I take L-methylfolate. My llmd says this will be a lifelong drug for me. I don't know if you can so much cure it but just relieve the symptoms and potential problems because of the mutation
Posted 8/23/2015 4:41 PM (GMT 0)
This is so eye opening!! I should have been on Methylfolate when I was younger!! I had all the symptoms of a deficiency, including treatment resistant anemia!! Ugh.

Does anyone know of any reason to not just try out taking methylfolate, since it's not stored in the body? I already take Methylcolbalamin because the cyano type makes me extremely exhausted for 2 hours after I would take it.

And can you believe that this is actually on a site? Oh MY!!! : "The body does not use the natural form of folic acid (folate) as easily as the manmade form. " Stay away from this site!!!
womenshealth.gov/publications/our-publications/fact-sheet/folic-acid.html#b

And I found this, which might be helpful for some:
Medications that lower levels of folic acid: The following medications may interfere with the body's absorption of folate, meaning you may need to take a folic acid supplement while taking them. Talk to your doctor first.

*Antacids.


*H2 blockers: Used to reduce stomach acid, including cimetidine (Tagamet), famotidine (Pepcid), and ranitidine (Zantac).


*Proton pump inhibitors: Used to reduce stomach acid, including someprazole (Nexium), lansoprazole (Prevacid), omeprazole (Prilosec), and rabeprazole (Aciphex).


*Bile acid sequestrants: Used to lower cholesterol, including colestipol (Colestid), cholestyramine (Questran), and colsevelam (Welchol).


*Anti-seizure medications: Including phenobarbital, primidone (Mysoline), and carbamazepine (Tegretol).


*Nonsteroidal anti-inflammatory drugs (NSAIDs): Including ibuprofen (Advil, Motrin) and naproxen (Aleve).


*Sulfasalazine (Azulfidine): Used to treat inflammatory bowel disease (IBD) and rheumatoid arthritis (RA).


*Triamterene (Dyrenium): A diuretic (water pill).


*Cycloserine: An antibiotic.


*Pyrimethamine (Daraprim): Used to prevent and treat malaria and to treat toxoplasmosis.


*Trimethoprim: An antibiotic used to treat urinary tract infections.

/umm.edu/health/medical/altmed/supplement/vitamin-b9-folic-acid
Posted 8/23/2015 9:34 PM (GMT 0)
Traveler

I read a few websites and it says not to take unless your doctor prescribes. It does come in different milligrams. Mine come from the pharmacy. Deplin is also listed as a associated medicine to l-methyl
Posted 8/23/2015 10:09 PM (GMT 0)
It's because I've passed menopause that I was asking. I have no doubt that I should have been on it when I was younger.

I guess I need to see what my levels are first - LOL! Folic acid helps with a lot of things that we are at higher risk for once we hit 50 yrs though. Heart disease, age related hearing loss, Age-related macular degeneration (AMD), and some forms of cancer- which is what got me asking about it.

Thanks SailorKim!!
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