Help with ME

Discussion in 'Chronic Fatigue Syndrome Main Forum' started by Mandyspike, Apr 30, 2015.

  1. ljimbo42

    ljimbo42 Active Member

    Hi again CG- I just remembered this email exchange between Dr. Ben Lynch and a client about over and under-methylation. The client gave him permission to share this. I hope this helps you get a better understanding of whats happening with you!:)

    link to page

    Jim
  2. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Thanks for the supportive words. Your last paragraph said it best! I was cracking up! So true! "When you do this, that happens, but when that happens, you've increased this, but you need that to do this or this to do that!" o_O

    I took some niacin the other night (about 250mg) over a 2-3 hour period and I actually felt better. Yesterday I tried to do some work in the yard and very quickly completely crashed. I was so frustrated and discouraged last nigh that I actually just said screw it and opened a bottle of wine. I only had one glass and woke up with a headache.

    My intuition this morning was to look at carbs and electrolytes. Living at altitude and eating so clean, I started wondering if my body was getting enough carbs for energy. (I've read you burn more carbs at altitude) I don't eat gluten, grains, beans or potatoes, so my carbs pretty much need to come from fruits and veggies. I try to keep the sweet fruits to a minimum to avoid candida issues. This morning I tried some gluten free oatmeal with blueberries and then had some organic ground beef with romaine lettuce and black beans for dinner. I'll see how I feel tomorrow.

    I found this website: https://mentalhealthdaily.com/2015/...s-overmethylation-causes-symptoms-treatments/
    The interesting thing is I have symptoms of both over and undermethylation. I don't know how true that site is, but I found it interesting.

    Some more research led me back to Dr. Lynch's website and his article: http://mthfr.net/preventing-methylfolate-side-effects/2014/11/26/
    I read it and re-read it, then read it again, checked blood work, read it several more times ;) and discovered a few things about what might be going on: I am low in Manganese and most likely low in Electrolytes (I used to take emergen-c, but don't now because of the folic acid) My B1 is also low, so I ordered some SH B-minus, Electrolyte packets and Manganese to get those levels up. From what he wrote in his article, it would make sense that the glutathione and MF are making me feel worse. I also have a general deficiency in B vitamins, and as he points out, the MF will make things worse until I get those levels up. I feel a little more informed today, which is good. I also took an adrenal support supplement and my energy did pick up a bit.

    At the end of the article he talks about pulsing MF, so I'll have to remember that when I start to feel good.

    Whew! That was a long message! :eek:

    Hope you are enjoying life and getting out and about! I'm jealous that your house is getting clean! :D

    CG
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  3. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Thanks for the article. I read that today. I do think I'm detoxing too fast and my pathways aren't ready to handle it. Need to slow things down and build up my vitamins and minerals, then start back on the glutathione and MF/B12.

    Have you read his book?

    CG
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  4. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    Exactly, you got it!!:D;)

    I think you have hit the nail on the head. It makes sense that your symptoms are coming from detoxing. There is no doubt that people with CFS have VERY, VERY high levels of oxidative stress from toxins.

    So anything that we can do to lower the toxic load the better. I take a boatload of supplements to help my body detoxify but it has taken me years to be able to incorporate all of them without major side effects.

    I don't know if I have posted this diagram before. It shows the vitamins and nutrients needed for phase 1 and phase 2 liver detoxification. If you look under phase 2 (conjugation pathways) you see methylation.:)

    I haven't read his book but I have watched and listened to many of his webinars and his slide shows. Very informative! Have you read his book?

    [​IMG]

    Jim
  5. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    I feel like a health detective! Your diagram gave me the thought to look more into Phase 1 and Phase 2 detoxification pathways and I found this great website:
    http://www.livingnetwork.co.za/chelationnetwork/food/liver-detox-pathways/
    So interesting and I discovered the Niacin is slowing down my Phase 1 which is why I feel better when I take it. I'm really excited to research more on this website! Looks like I may want to try grapefruit juice too - And more epsom salt baths. The explanation of Phase 1 and Phase 2 reminds me of the I Love Lucy Candy Factory Episode! :D


    Yesterday was good, but I spent today on the couch feeling like :(. So frustrating as the weather is gorgeous and I want to be on the lake trying out my new paddle board! I think I just need to increase my Niacin while I slowly start the methylation - (at opposite ends of the day)

    Each glimpse of knowledge gives me hope. Praying for a better tomorrow!

    CG

    P.S. Nope, haven't read his book. I can get through websites, but taking on a book is just too much of a challenge sometimes. You probably know what I'm talking about! :cool:

    Also - looking at some of those elimination diets on that website is Crazy! That's everything I eat!! I just went to Trader Joe's and Costco yesterday, so I won't be trying them any time soon! o_O
  6. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    I remember that I love lucy episode, hilarious!!

    As you continue to experiment and find new ways of improving your health, the ups and downs will smooth out. They have for me. Most days now I have fairly stable energy, unless I get a little wild and crazy and over do it.:)

    Speaking of weather, it's noontime here and already 91 degrees in the shade, with a heat index of 103, because of the humidity!!:eek: I've got my a/c on though with a 20" fan blowing cool air on me.:cool:

    I've had really good energy for a while now and have gained about 5 lbs in the last few weeks, which I really need. I'm focused on helping my mitochondria create more energy. I started taking more vitamin B-1 a few weeks ago, which is very important as a co-factor in something called the pyruvate dehydrogenase (PDH) enzyme.

    This enzyme was found to be impaired in CFS, which slows energy production in the mitochondria, so I'm doing what I can to help it along.

    The B-1 seems to have made big difference in my energy levels, which makes sense given that it's a co-factor for PDH.

    I know just what you're talking about. I can't remember the last time I read a book! I'm sure it was a loooooong, looooong, time ago.:D

    I'm going to take a look at that website you posted. Hope you're doing well!

    Jim
  7. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    After reading more information on that website and his protocol, I decided to try the sulfur food exclusion trial and start the supplements on the following link - http://www.livingnetwork.co.za/chelationnetwork/chelation-the-andy-cutler-protocol/ You'll see "Supplements to take while chelating" I started on these and I'm taking 1/4 tab of the MF/B12. Andy didn't really subscribe to the MTHFR mutation idea, but if you look at both, I think you'll see they're actually quite similar - It's all about clearing pathways. I think you'll find his protocol very interesting and very spot-on.

    I started his recommendations on Friday and started adding in what I needed and removed glutathione and ALA for now. I also stopped the chlorella and any sulfur related supplements. I felt better almost instantly. I had an incredible amount of energy Friday afternoon and evening. Saturday was great and I worked in the yard for 7 hours! Today I went paddle boarding in the morning and horseback riding in the afternoon! I was tired this afternoon, but heck, after a weekend like that, who wouldn't be!

    I'm really excited to get Andy's book, it should arrive this week. I was at such a low point when I found his website, I'm very grateful I found it. This is a book I will actually read, especially now that I'm feeling better.

    I'm glad to hear your energy levels are pretty stable! That's great! Nice to hear about your weight gain - always nice when needed. It's very cool that you're still on here giving advice. I appreciate it!

    I don't know how you handle the humidity and the heat. I actually have to use a humidifier in the house to keep it at about 25%. I don't have AC here in the mountains and it's been hot here lately :(.

    Funny that you would mention B-1, I went through all the minerals and vitamins I was low in (including B-1) and made a spreadsheet of the top food that were high in magnesium, manganese, B1, B2, etc and what I found was that a lot of them are sulfur foods, so if my sulfur pathways aren't functioning, no wonder I wasn't doing well!

    I'm off to bed!

    CG
  8. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    Is this protocol working for you?


    I've learned how to manage my energy without the major crashes/PEM. When I do crash, it's usually gone in a day or two. However, I'm not anywhere near 100% yet.

    My energy is continuing to improve though, so I know I'm going in the right direction!:) It seems like my energy is not only improving and becoming more stable but also I am getting stronger without doing anything different. The weight I'm putting on is mostly muscle, I can feel it. Something I see as a very good sign.

    That's great!! It's nice to have the little oasis's in the desert, so to speak! I hope you didn't suffer too much PEM.


    Humidity is a killer! I use a big 20" fan and my A/C if I need it, to stay reasonably comfortable. Do you not have A/C there because it's usually cool enough that you don't need it?


    You might want to consider adding B-1 to your supplements. I know many people with CFS have had big increases in energy from it, myself included and it's cheap!:D

    Hope you are doing well CG!

    Jim
  9. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    I'm glad your energy continues to improve - that's great! Getting stronger is also a really good sign! I'm hoping my energy will be a bit more steady once I start chelating. I'm hoping to start later this week, as I got the all clear from my dentist today - No more mercury left in my mouth. Yay!

    I've been learning a lot about detox pathways and also learning that a lot of the MTHFR hype is just that - I had a phone appt with another genetic specialist and he didn't focus on my MTHFR mutation at all. He focused on clearing other pathways due to my genetic makeup and actually suggested I back off the MF/B12. I'm adding a little more focus to a supplement called Sulforaphane - The supplement I'm using is from Broccoli seeds. It does seem to be helping with the energy a bit and I'm trying to get in the sauna as often as possible to get the toxins out. I stopped taking ALA as suggested by the Cutler Protocol, but will resume it, starting at a low dose once I've taken low dose DMSA for a month or so. The links I sent you were extremely informative and I continue to learn more and more about the liver detox pathways and how those can be affected by lead and mercury. I'm hoping that once I begin to clear those and other heavy metals, that my health will fall back into place

    It's definitely about finding the right balance of what works for your particular body and taking the correct supplements to support your Phase 1 and Phase 2 detoxification. I also discovered that some of the supplements I was taking were making me worse because of the mercury. It's going to be a slow process, but I have to do it and IV chelation isn't the right option for me. Slow and steady. Hopefully things begin to clear sooner than later.

    Most homes up here in the mountains don't have AC because generally it doesn't get that hot and most homes have nice pine trees for shade. Lately it's been very hot and I have old windows that only seem to amplify the heat. As soon as the sun goes down, the temps drop into the 50's or 60's, so it's windows open and fans a blazin'!

    Enjoy your week!

    CG

    P.S. I am taking a Vitamin B complex, as I'm low in all.
  10. Mandyspike

    Mandyspike Active Member

    Hi Jim, hope are keeping well? I have been trying to rack my brains as to when it was I had any proper ME/CFS symptoms. It seems like months and months ago. I am doing so well in that regard.
    My sleeping however is so bad! I’m only getting a couple of hours each night, it’s horrible and I am at my wits end.
    You mentioned Basil. What must I do with it? I have fresh and dried which must I use?
    On a good note, the weather here has been absolutely gorgeous. Sun,sun and more sun for us, in fact it has been the best summer we have had in years. We are desperately in need for some rain though. Anytime soon they will be issuing us with a hose pipe ban. Never thought I would be able to say that. Is it nice and sunny where you are?
    Are you still keeping up with your karaoke? How’s things with your Son is he still with his girlfriend?
    What is your diet like at the moment? When we last discussed food you were on a low carb diet. Are you keeping up with that?
    Speaking of carbs, I am going to put some potatoes in the oven now to bake for later, they will be nice with quiche and salad.
    Have yourself a nice evening.
    All the best Jim
    Mandy
  11. ljimbo42

    ljimbo42 Active Member

    Hi CG- Hope you're enjoying the summer!

    Yes, I think some doctors focus too much on the SNP's and loose site of the other factors that cause dysfunctional enzymes and pathways. Probably the biggest factor in CFS is excessive oxidative stress. My view is that most of that oxidative stress is coming from an altered gut microbiome and increased intestinal permeability (leaky gut).

    I think the oxidative stress that causes, is massive!!

    There are now 3 leading ME/CFS researchers that think that gut dysbiosis is the primary driver of CFS. Ian Lipkin, Chris Armstrong and Derya Unutzman.

    This is a quote from Chris Armstrong-

    LINK

    This is Derya Unutzmans' view-

    LINK

    This is Ian Lipkins' view-
    LINK

    So that's three leading ME/CFS researchers, SO FAR, that think that the gut is the cause of CFS.:) I think that number will continue to grow as the research continues.

    I hope this gives you some food for thought!:)

    Jim
  12. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I am doing well but wish I was 100%!:) I'm happy to hear that your CFS symptoms are a thing of the past!! Fingers crossed, that will continue.

    I can't imagine what it must be like to only get a couple of hours of sleep a night, I feel tired just thinking about it. If I only get 5-6 hours, I'm a basket case.

    I buy capsules but you can make a tea out of the dried basil. I take a 400mg capsule about 30 minutes before bed and it makes me noticeably drowsy and is a big help in my sleeping.

    With all that sun are you getting a good tan? We have also been having a really good summer lately. It's been sunny and up around 26 C, very nice!


    Unfortunately my son and his girlfriend broke up, so now he's playing the field again. He is still an apprenticing electrician and going to school to become a master electrician, he really likes it. I'm still doing about an hour of karaoke 3 times a week. I might even be getting better.:)

    I'm still on the low carb diet but I do eat a small amount of carbs every day, like rice and potatoes.

    I hope your CFS symptoms continue to be a thing of the past!

    Have a great day Mandy....... Jim
  13. Colorado_Girl

    Colorado_Girl Member

    Hi Mandy and Jim,

    Just thought I'd check in. I've started the new protocol for detoxing mercury, heavy metals and other toxins from my body and I'm on week two. So far it's been a bit of a roller coaster, but I'm learning a lot. I've been focusing on my diet (Paleo/keto), gut health, supporting my liver (detoxification pathways), adrenals and doing the chelation low and slow. I'm only taking 1/2 tab of the MF/B12. I've noticed that artichoke extract, milk thistle and grapefruit juice are really helping my liver. Jim, per your suggestion I bought some B1. I'm already taking a B complex, but thought I'd in a little more of the B1 for some extra energy. I just got it today, so I'll keep you posted. Have either of you ever tried Inositol? I purchased some today and will be trying that within the next few days. Jim, I don't know if the same will be true for you, but I found that once I went off all grains (including rice) and went off potatoes too, I felt better. I also don't eat any gluten.

    Hope you both are continuing to improve!

    CG
  14. ljimbo42

    ljimbo42 Active Member


    Hi CG- How's the detoxing going? Did you get any benefits from the b-1? I have tried inositol but oddly enough it gave me anxiety, it suppose to help with anxiety!:confused: I only eat a very small amount of rice and potatoes now and I am slowly cutting back on those too. I think it's best for the gut to cut out all starches if possible.

    I started taking branched chain amino acids (BCAA's) a few weeks ago, to help with PEM and crashes. I'm happy to say I have only experienced very minor PEM and NO crashes since I started them!! I have been reading posts at Phoenix Rising about people getting great relief from PEM and crashes so I thought I"d give it a try.

    I'm taking a fairly high dose at 10-12 grams a day but it's worth it. This is the first thing I have found, EVER, that has had any kind of a significant impact on PEM and crashes. I just hope it lasts!!

    Hope you are doing well!

    Jim
  15. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Are the amino acids still helping? I'm actually doing ok. I've backed off taking the ALA and I'm just focusing on diet, exercise and sauna. I think a daily sauna is key for me in getting out the toxins and heavy metals. I'm also back to doing everything I can to improve my methylation. I found this great article:
    https://www.mindbodygreen.com/0-182...ters-for-your-immunity-inflammation-more.html

    One thing that seems to be helping me is 2000mg NAC, 1000mg L-Glutamine and 500mg of Glycine. I learned glutathione supplements don't digest well, so I'm doing the aforementioned instead. I'm also pulsing the B12/MF, and taking a B supplement a few times a day as I learned mercury can deplete one's B vitamins. I did add in more B-1, but not sure if that directly is helping. I'm sure it isn't hurting.

    I'm also starting weight training and I'm hoping that will help me get back in shape, get some better quality sleep and lose some weight.

    Are you doing anything for the Labor Day weekend? I'm hoping to get in some horseback riding and maybe have dinner with friends.

    Hope you're continuing to improve.

    CG
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  16. Mandyspike

    Mandyspike Active Member

    Hi Jim, it’s been ages since I contacted you.
    I am writing to say that I am leaving the forum now. I have been going through complete and utter hell for weeks with this insomnia I am plagued with. I am going night after night without any sleep whatsoever. I am finding it so difficult to function. I have no interest in anything and as you will know, that is not me.
    It has been really nice conversing with you all these years.
    I wish you a very long and happy life and thank you for all the support you have been giving me during that time.
    Goodbye Jimbo
    Mandy
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  17. ljimbo42

    ljimbo42 Active Member

    Hi CG- Sounds like you are doing a lot of the right things!:) I am doing really well. The BCAA's have allowed me to increase the dose of antibiotic herbs A LOT, to get rid of the bacterial overgrowth in my gut. The BCAA's were actually giving me so much energy I had to cut back on the dose so I could sleep better.

    I am absolutely convinced that my core problem is my gut. So I'm continuing to treat it more and more aggressively. The more aggressively I treat it, the better I feel.

    I hope you continue to improve as well!

    Jim
  18. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Thank you so much for the kind words. I'm very sorry to hear about our ongoing insomnia and how much it's messing up your life. I feel confident that you will find a solution.

    The only thing I could possibly compare that to would be my CFS at it's worst. I was spending 12-14 hours a day sleeping and still waking up exhausted and spending most of my days in bed from exhaustion. It was a horrendous time in my life.

    I am doing so well with my CFS that I am spending less and less time on this forum and another forum that I use to spend a lot of time on.

    I have also really enjoyed our talks over the years very much. I hope for you a very speedy solution to your insomnia and nothing but the very best for you in the future!!

    All the best, Jim
  19. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    It's sad about Mandy. Chronic illness with no clear idea of what's going on is so frustrating!

    I have some great news! My autoimmune disorder is gone! (Confirmed by a blood test last month) After 6 years of dealing with a connective tissue disorder, my immune system is normal again! I did it with diet, supplements and detoxing.

    You are so right about your gut! I hope that's improving! I know L-Glutamine is excellent for helping to heal the gut.

    As happy as I am about my immune system, I'm still a bit confused about my health... I'm still dealing with some pretty bad fatigue. I had my first B-12 shot (Hydroxocobalamin) in early September and I did great for about 3 weeks, so I'm going to go back today for another one.

    I'm really interested in the BCAA's. That's amazing that they were giving you so much energy! I was looking on Amazon at Bulk Supplements BCAA's. Do you have a brand you recommend?

    Also, as it seems you and I are the last two here, is there a way to private message and maybe we could exchange emails? I would like to keep in touch with you, as I too, am spending less and less time on the forums, but there are a few people I've met who I am maintaining contact with.

    CG
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  20. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    From our past talks, I think it's menopause that's causing her chronic insomnia. She has completely recovered from ME/CFS but the insomnia is destroying her life.

    That's fantastic! Must feel great and give you validation that you are doing the right things.

    I would encourage you to focus on healing dysbiosis and leaky gut. I am having great progress doing that. That's also how Mandy fully recovered. In fact that's the only thing she did to recover, was to treat her gut. She was taking dancing lessons, doing yoga, going for 1-2 hour walks etc, without any issues before the insomnia from menopause got so bad.

    I have taken Bulk Supplements brand but I prefer this one, I also think it's cheaper. Bulk Supplements brand is made from duck feathers, which sounds bad but really isn't.:) The one I use is made by fermentation, which is suppose to be better quality.

    I am using 14 grams a day on an empty stomach and out of all the 100-150 supplements I've tried in the last 12 years. Nothing comes close to being as effective as BCAA's, at high doses!! 10-15 grams a day.

    I would start off with just 2-3 grams on an empty stomach though to make sure you don't have any side effects. You shouldn't because we get BCAA's through our diet every day. They are very bitter so you will probably need to mix them into some kind of a flavored drink.

    I will PM you my email address.:)
    Last edited: Oct 4, 2018