Help with ME

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

  1. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Because of the HH, I've had to stop chlorella due to its iron content. I now know how much the chlorella was helping with my energy. I increased the Methylfolate/B12 today by 1/2 tab (now 1-1/2) and I was still kind of tired today. I'm now wondering how I'm going to detox from the heavy metals if I can't take chlorella - I'll keep getting in the sauna to see if that helps.

    I don't eat any processed foods or a lot of red meat, so I'm not sure how I'm going to lower my iron other than blood draws. From what I've researched, HH can't be completely controlled by food or supplements.

    The mystery continues... :confused:

    ljimbo42 likes this.
  2. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    What do you think the chlorella was doing that helped with your energy so much? Getting rid of toxins?

    Methylation helps a lot with heavy metals. Something else you might look into is alpha lipoic acid (ALA). That's also something that's suppose to help with heavy metals. I think especially mercury. Here is a link to things that help with heavy metal detoxing at "". This site has incredible amounts of very accurate information on getting healthy!!

    I think there are things that help to block iron absorption from food, like calcium, when taken with iron rich foods and meals. Possibly reducing how often you have to do blood draws. Here is an abstract of a study on how calcium blocks iron absorption-


    Hope you're having a good day!:) It was a hot one here today, in the 80's.

  3. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Not sure specifically why the Chlorella helped. I've read some amazing benefits of this superfood. I've also had really good luck with Cellfood. Have you ever tried it? I use it daily to help with energy and also to replace my electrolytes after using the sauna. It also helps to detox the body too. I really want to stay on the chlorella, so I may consider taking it with eggs, tea, coffee, calcium or curcumin supplements to help block the absorption of the iron. I'm still learning what foods and supplements help block iron. I'm continuing to research various brands of Chlorella, as each seems to show varying levels of iron.

    Tomorrow I'm going to increase my MTHF/B12 to 2 tabs. I'm going to stay off the Chlorella so it doesn't mask my energy levels until I get my Methylfolate at the right level.

    I saw the neurologist yesterday and good news - it's official, he doesn't think I have MS. I was telling him about the MTHFR mutation and he seemed to find it pretty interesting.

    I also received some results from a NutrEval test. I'm low on B1, B2, B3, B6 and Manganese. I also need to up my probiotics to 50 B CFU's and add in digestive enzymes. I had some of the digestive enzymes yesterday with food and I felt sick, so I may need to up my probiotics first. I also have increased levels of mercury (which I suspected) and high Toxic Exposure to MTBE. I totally agree that I need to get my Methylation dialed in. I'm going to wait on my B1,2,3,6 vitamin supplementation until I see my functional med doc on the 31st, in the meantime, I'll increase my intake of spinach.

    Funny you would mention ALA, as my test showed needed support for that.

    Looks like I really need to focus on detoxing.

    Thanks for the great info on the calcium and the link. That was really nice of you to look that up and find that information for me!

    Hope you're having a great day! I need to run some errands.

    ljimbo42 likes this.
  4. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    I've haven't tried it. It's one of the 2 supplements on the planet I haven't tried yet.;)

    How did the increase in MF/B12 go? Any changes in how you feel?

    Well that's really good news! That must be a weight off your shoulders.

    The same thing happened to me a few weeks ago. I went up on my digestive enzymes to help better digest my food and felt really awful the next day. I have read that they are good biofilm disruptors.

    Pathogenic bacteria in the gut, often live in "biofilms" that keep them protected from antimicrobial herbs like oil of oregano etc. and antibiotics. When the biofilms get broken down, more bacteria die and cause die-off symptoms.

    Being low on B vitamins is very common in CFS/FM. I have read many posts of people that were low in B's.

    Hope you're enjoying the spring weather there in Colorado!:)

  5. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Yesterday was first day on 2 MF/B12 and I did pretty good. My fitbit showed over 12,000 steps, 5.18 miles, 165 active minutes and 17 floors. It also showed 2:12 of deep sleep! Most I've ever had! I have noticed since taking the MF/B12 I've had more nights with longer deep sleep. Usually I'm only getting about an hour of deep sleep. Even though I got a lot of sleep last night, I'm tired today. Probably a bit of detox mixed with recovery from yesterday. I'll up my dosage by 1/2 tab again on Sunday.

    The weather here is beautiful! Hope you are you enjoying your spring weather as well! Have a great Memorial Day weekend!

  6. ljimbo42

    ljimbo42 Active Member

    Hi CG- I just wanted to say a quick hello. I have been in a little bit of a flare for the last day or two. It sounds like last Thursday you were having a really good day!

    Before long you'll be doing marathons!!:D Did you go up again on the MF/B12 again on Sunday. If so, how are you doing at that dose? I'm seriously thinking about increasing my dose of methylfolate.

    I just need to do it slowly or I will become over-stimulated, feel anxious at times and have trouble sleeping. If I do it right though, I should get a nice increase in energy, without the side effects.

    Hope you are still doing well!:)

  7. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    So sorry to hear you're dealing with a flare - Uuuugh! I'm so done with the roller coaster of feeling good/then a flare or detox symptoms - totally sucks.

    I have had a few really good days in the last few weeks, but the last few days haven't been so great - I've been really tired. I upped my dose on Sunday and I'll up it again on Thursday to 3 lozenges. I started back on the chlorella today and took it with coffee to block the iron absorption. I also took a sauna today, but have pretty much been napping on the couch most of the day.

    I can relate to the over-stimulated feeling. I've had days where I just wanted to run around in circles to burn off energy!

    I don't know if I mentioned this, but a few weeks ago I had some red wine (Malbec) and actually felt better the next day. I found out it can lower iron levels in the blood. I see my doc on Thursday, so hopefully she'll help get me dialed in on everything.

    Hope you're back up and feeling better!

  8. Colorado_Girl

    Colorado_Girl Member

    Hey Jim,

    I saw the doctor today and I basically have 5 things going on:
    MTHFR mutation/Methylation issues
    Heavy Metal/lead and mercury toxicity (& other toxins)
    High Histamine levels
    Gut Issues (need more probiotics)
    Hemochromatosis (Caught it in the early stages and only need 1 blood draw)

    Funny that fatigue is a symptom of all of them.

    I'm happy to know what's going on, but I read something tonight that has me concerned about my B12 intake. This is from Huggins Applied Healing: "Many Universities have published articles on the ability of Vitamin B-12 to convert mercury vapor into the much more deadly “Methyl mercury”. Methyl mercury knows no barriers, and creates far more havoc than other mercury chemicals, because of its ability to travel anywhere in the body without inhibitions. Sometimes the effects of high doses of Vitamin B-12 (over 50 micrograms) take months to correct."

    Do you know anything about this? I'm off to to some more research.


    ljimbo42 likes this.
  9. ljimbo42

    ljimbo42 Active Member

    Hi CG- Yes, those are all very common in CFS/FM, except Hemochromatosis. After 11 years of research and trying many different supplement protocols. I have learned that dysbiosis and increased intestinal permeability can cause all of those issues and often does.

    Although I am also treating mitochondrial dysfunction, high oxidative stress and methylation issues, my primary focus is on healing my gut. Which I have learned is what is causing these things in me.

    That's great that you only need one blood draw to lower your iron levels!

    I have not heard of this. My gut feeling is that it's probably not an issue.:) I've been taking about 4,000 mcg a day of methylcobalamin, sublingually for 3-4 years without issue. I have also read many posts of people with cfs/fm that have been taking high doses for years without problems.

    Given the high prevalence of high levels of heavy metals in cfs/me. I think if it was a real issue, many people would have had serious side effects from it.

    I just bumped up my dose of methylfolate another 400mcg today. I'll see how it effects my energy. If it helps and I don't become to stimulated, I'll stay with it.

    Do you take vitamin B-1? When I take even low doses of 25-30 mg, I get very stimulated and need to be careful or I become over-stimulated, feel anxious and have trouble sleeping.

    Hope you're having a good day CG!:)

  10. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Hope today finds you well. I did a little more research on the Huggins idea on B12 and it appears it may be old information that is still making its way around the internet. There have been other studies that show opposite results. It may have been an MTHFR issue that no one knew about back then. I'm taking curcumin and chlorella to help bind the mercury, so I'm hoping it won't be an issue.

    I have a feeling I may be over methylating. My doc put me back on my B-Supreme, which contains folate and she also added in 50mg B6 as P5P. I dropped my dose of B12/MF back to 2 lozenges, but it still may be too much. I'm also taking Oil of Oregano and an herbal supplement to kill off some bad bacteria in my gut, so I don't know if that's making me tired. I had good energy yesterday morning, but as soon as I took my supplements, I tanked. I have a couple commitments over the next few days, so I think I'm going to back off on the supplements until Friday.

    My doc also wants me to start NAC, so I'll probably start that this weekend too.

    I couldn't agree with you more about the gut issue being at the center of almost everything. It's great that now they're saying most autoimmune disorders are stemming from the gut! I'm almost ready to do a full juice cleanse, as I put on about 20lbs over the winter and it's not making me feel great about myself. I'd like to get out and start dating again, but I tend to lose interest in that pretty quickly as I wonder who would want to deal with this... I always say I feel like damaged goods - Pretty sad, but my interest in dating is at the bottom of my to-do list.

    I had my blood draw a few days ago and I haven't noticed much of a difference, but there's so much else going on that the benefits may be masked right now. I live above 8000' so my body should regenerate new blood cells pretty quickly. I might just start donating every 2 months for health benefits.

    How did your increase with the MF go?

    Talk soon,

    Last edited: Jun 6, 2018
  11. ljimbo42

    ljimbo42 Active Member

    Hi CG- It might very well be the oil of oregano that sapped your energy. When it kills bacteria in the gut, it can cause anywhere from mild to really bad die-off symptoms, fatigue being one of the biggies. You might want to take it every other day to start. Then once your body has adjusted to it, maybe you could take every day without side effects.

    I would like to start dating again also but like you, it's not even close to the top of my to-do list! My plan is to get healthy enough, then I can start looking again.:) My view is that relationships take so much time and energy and rate now, I just don't have it to give.

    It went well. I feel a definite increase in energy and maybe a little more clear headed. I also added in an additional 25 mg B-1. B-1 is needed for good mitochondrial function. I have also noticed an increase in energy from that too. Every day is another experiment in what will work better!;)

    I hope your commitments are going well!

  12. Mandyspike

    Mandyspike Active Member

    Hi Guy’s, I’m back!! We have all had a fabulous time. The wedding went well I am pleased to say.
    My Daughter looked so beautiful, there was lots of smiles and tears, it was certainly a day to remember.
    The weather in Cyprus as expected was glorious except for one day, we had taken a trip to the mountains when we experienced a thunder storm. It rained very heavily which was no problem really as we sat enjoying lunch in a quaint little cafe. It was quite lovely really.
    I am finding it hard to get back into the swing of things since we have arrived back. I have been to a couple of classes at the club but my heart wasn’t in it. I will start a fresh next week.
    That’s all for now
  13. Colorado_Girl

    Colorado_Girl Member

    Hi Mandy,

    Welcome back! Sounds like you had a wonderful time! Hoping things snap back for you next week!

  14. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    I took two of the Oregano last night in hopes the "tired" part would happen while I was sleeping, although my deep sleep on my fitbit was very low. It's funny that you would recommend taking it every other day, that's exactly what my doctor told me to do. :cool:

    I wanted to ask your thoughts on something... I had gone to a specialist here in Colorado to look at my genes and help me figure things out. She didn't catch the hemochromatosis and was recommending supplements that contained iron. She mentioned a specialist in PA whom she had learned from (along with Ben Lynch). Anyway, I contacted this man's office and he does consult with patients, but when I was filling out the intake form, there were several questions such as: "How much can you afford for supplements", "Are you going to be a long-term patient?" "Do you have financial hardships" "The 'special' supplements we sell are only available through us", "Will you be consulting with your doctor to review our recommendations?"... I have to say, reading and filling out these few pages on the intake form was a definite turn-off. I'd still like to meet with him to hear what he has to say (I'm mostly looking for advice on supplements for my genetics and what he recommends for MTHFR), but I feel like I'm going to be worried about having to have my guard up so I don't get suckered in by some slick salesman. The questions may be with good intention and I tend to be very cynical and skeptical, so I guess I'll just find out.

    On a fun note... I bought a couple of stand up paddle boards (It was a deal I couldn't pass up) and there is a beautiful mountain lake not far from me, so I'm hoping to make that my "thing" this summer. I'm hoping it will help with my strength and balance so next year I can get back to hiking and mountain biking.

    Have a great weekend!

  15. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- I'm happy to hear the wedding went well! How long were you there in Cyprus? I googled Cyprus, it looks absolutely beautiful! Did you find it hard to leave or were you ready to come home?

    Now you need to get back into "UK mode".:):D When you say you took a couple of classes at the club. Do you mean dance classes or something else? I'm sure you will settle back into your usual routine in no time. Have a great day!

  16. ljimbo42

    ljimbo42 Active Member

    Hi CG- As I was reading these questions, I felt they seemed fairly normal from a doctors perspective. One thing to be aware of though is when doctors become overly focused on treating genetics more so than the patient.

    I have been following Ben Lynch for several years, he says this all the time, "treat the patient not the SNP" or polymorphism. He says that having SNP's doesn't mean they are causing any problems. So there is a lot of trial and error even after one finds out what SNP's they have, according to Dr. Lynch.

    He says that too many doctors get caught up in treating the SNP's and not enough on how the patient is responding to treatment.

    That does sound like a lot of fun! I've never been on a paddle board but I'd give a try if I had the chance. I use to do some hiking. The last big hike I went on was with about 12 other people. We hit 3 mountain peaks and it was a 13.2 mile hike. It was absolutely beautiful, with a waterfall or 2 and the whole nine yards!:cool:

    Hope you're enjoying the day!

  17. Mandyspike

    Mandyspike Active Member

    Hi Jim, we were in Cyprus for a week. No I wasn’t ready to come home, I could quite happily live there and if I had the money I would. I just love the climate. It can be so depressing here where we live. It’s more often than not grey and cloudy as it is this morning. One never knows what to wear.
    And another thing, my sleeping was really good while I was over there. As soon as I got back to England my problems returned.
    However I am back in the swing of things now. I have been for an hourly walk already earlier today and I am off to the gym shortly.
    The classes I attend are fitness classes really but based on dance. I really enjoy them. I will be going to one tomorrow.
    Are you keeping ok?
    ljimbo42 likes this.
  18. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- Cyprus does look like a beautiful place to live. I understand what you are saying about grey, cloudy days. I don't mine one every now and then but when we get 4-5 days in a row like that, I also start to feel somewhat depressed.

    That's too bad about your sleeping problems coming back. Something you might want to try is basil. You might have some in your kitchen to make a tea with. I take a 400 mg capsule every night about 30 minutes before bed and it helps me drift off to sleep quite a bit.

    I'm happy to hear you are back into your routine with dancing etc.:) I'm feeling quite good most every day now. When I exercise I can do more without my usual PEM, which always comes on 2 days after I over do it and lasts 24 hours.

    What happens though, is I get these flu-like flares, that can come on anywhere from 1-5 days after I over do it. They feel just like the flu but only last 1-2 days.

    So I am not exercising as much as I would like to because of those flares, although my apartment has never looked better!:D

    Sending some sun your way!:);)

  19. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    I've been really tired lately and have found it extremely difficult to focus. After reading some more info about MF, I might be over-methylating. I feel like I'm more irritable and not as happy as I was. It also could be the opposite - I might not be taking enough, but I'm going to start with backing off the MF/B12 first, to see how I feel. I'm taking some niacin to mop-up stuff. I have an appointment with another genetic specialist on the 6th. so I'm hoping he can offer up some advice on dosages. I'm missing the super-vibrant woman I used to be.
    ljimbo42 likes this.
  20. ljimbo42

    ljimbo42 Active Member

    Hi CG- I'm so sorry that you are having such a hard time. I struggled a lot too when I first started treating methylation. If I didn't go up on my dose at least 100-200 mcg every 2-3 days I would start to feel really tired and depressed. I don't know if that will work for you.

    I hope you get a handle on this soon. I know how really awful it can make you feel. It sounds like, by increasing your methylation, you have increased your detoxification and your body can't get rid of the toxins fast enough. Over-methylation symptoms are anxiety, feeling hyper, restlessness and high energy.

    It sounds to me more like you are under-methylated. What could be happening is by increasing detoxification you are at the same time increasing your need for more methylation. Because you need good methylation to help to get rid of the extra toxins created by increasing methylation. Does that make sense?

    You will get this! :)

    All the best, Jim
    Last edited: Jun 23, 2018