Help with ME

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

  1. Mandyspike

    Mandyspike Active Member

    Hello, no I don’t mind you joining in the conversation. You are right about Jim he is a very knowledgable guy and hopefully he might bet back to you about the Methylfolate. I’m Sure he will know all about it.
    Have you been sick for a while?
    I am still feeling great Jim. My sleeping isn’t brilliant but it’s far better than it was. Lack of sleep plays havoc with the mind and body. I feel so much better like everybody else if I manage to get a few hours kip.
    It isn’t very nice weather wise here in the UK at the moment. last week we had a couple of sunny days which was lovely! It was my birthday at the weekend and my two children very kindly treated me to a luxury Spa day at a really posh hotel. It was fabulous! Such a nice treat. We spent a lot of time outdoors in our swim wear my daughter and I. With the glorious weather it was just like being in Southern Europe. Pity I never thought to take any sun cream. Silly me. What’s the weather like in your neck of the woods?
    How are your energy levels at the moment Jim?
    That’s all for now
  2. ljimbo42

    ljimbo42 Active Member

    Hi Colorado_Girl - I'm happy to help with what I can. I started methyfolate a few years ago and suffered profound detoxification symptoms. Methylation happens in every cell of the body but mostly in the liver, where it helps to detoxify many toxins.

    I learned that going up slowly, 100-200 micrograms (mcgs) every 2-3 days almost completely eliminated my detox symptoms. You should also be taking methylcobalamin (Methylated B-12), sublingually, with methylfolate, as they work together to keep the methylation cycle moving. I think 1,000 mcgs sublingually would be the minimum to start.

    Some people also have problems with detox symptoms from methylcobalamin too. So if you aren't taking it, I would start a a very low dose, like a quarter tablet (250 mcgs or less) and see how you feel, then go from there. Treating methylation has helped me a lot but it's part of a much bigger picture.:)

    Last edited: Apr 24, 2018
  3. ljimbo42

    ljimbo42 Active Member

    Hello Mandy- It's wonderful to hear you are still feeling great!! What a great way to spend your birthday, at a spa being pampered!! Gotta love that.:) Belated HAPPY BIRTHDAY!! Don't worry, I won't ask.;)

    The weather here was miserable up until last Friday. The days since have been really nice and comfortable not too hot, not too cold. Goldilocks days.:D

    My energy is REALLY good. I'm back out walking every other day now in addition to doing several hours a day of cooking, cleaning and organizing. I'm cleaning, dusting and organizing things, that haven't been cleaned, dusted or organized in a few years or more.

    I have been taking 100 mg a day of something called coq10 for a long time. I recently went up to 400 mg a day and have noticed a big increase in energy and it stopped the flu-like flares I was getting from exercising. They felt just like the flu and would often put me in bed for 4-5 days.

    It hasn't stopped my PEM but it has helped reduce it's intensity, quite a bit. My PEM hits me 48 hours after I physically over do it and lasts 24 hours, every time I get it, like clock work.

    Little by little, everything is coming together!!:)

    Have a super day Mandy!!.......... Jim
  4. Colorado_Girl

    Colorado_Girl Member

    Hi Mandy and Jim,

    Thanks for the support! I'm SO frustrated! I really feel like Folate and this MTHFR mutation are playing a major role in my condition - and are going to play a major role in my healing! Last year I felt great and was working on my house in CA - I was laying floors, painting, installing baseboards, etc. I felt awesome! The move to Colorado took a lot out of me and I've had times since I moved here where I've felt great, but that usually doesn't last.

    I had my amalgams removed in December and I think I may be dealing with some residual toxicity from that. (And with the MTHFR mutation I'm not able to clear it normally.) I have the A1298C and C677T mutations. I recently saw a genetic specialist who has taken several courses from Dr. Lynch and it was suggested I take 500mcg of Methylfolate and 500mcg of Methylcobalamin. I have no problem taking the Methylcobalamin, but when I added in the Methylfolate I got SEVERLY depressed and extremely fatigued - spending days on the couch. I have a new functional medicine doc who suggested increasing the B12 to 2500mcg/day and going off the Methylfolate until we get my blood results to find out exactly what is going on.

    I do have a sauna at home and I've been using that about 3 times per week. My fibro feels like it's gone and I've gotten rid of that through diet and posture therapy, but this feels like a new issue. After doing some research, the fatigue and weakness seem to match up with a folate deficiency, so I'm anxious to see the blood test results.

    Will eating high folate foods resolve it, or do I need to take the Methylfolate too? I'm also really frustrated, as I've had doctors suggest everything from not taking it, a dose of 250mcg/day, a dose of 1000mcg/day, to a dose of 5mg/day. I think your advice on starting slow is the way to go. Do you have a particular brand you use? The seeking health brand I have is a 1000mcg lozenge, so tough to increase 100mcg at a time. I'm using Douglas Labs Liquid B12 Methylcobalamin, any other brand you suggest? I saw something on Phoenix Rising about Jarrow brand being good.

    So good to see you're both feeling great! Glad you're still here too! A lot of people find an answer and stop posting because they're too busy getting back to living their lives - can't say that I blame them, but I appreciate any advice you can offer.

    Best wishes,
    ljimbo42 likes this.
  5. ljimbo42

    ljimbo42 Active Member

    I got a very similar reaction to 50-100mcg of methylfolate, it was devastating! Like you though, I have had no issues at all with any dose of methylcobalamin.

    I don't think diet alone will do it based on my experience and reading that of many others with cfs/fm.

    I use 2 different brands. I think as long as it's a reputable company the brand doesn't matter. Low dose capsules are probably the best way to go. You should be able to get 400 mcg capsules. These are the ones I use. That way you can estimate 50 to 100 mcgs fairly easily. Just pull the capsule apart, dump about 1/8 to 1/4 capsule into the top half and you have 50 or 100 mcg.

    I read on Phoenix Rising forum of someone that was able to go up on their dose of methylfolate quite fast without the horrendous side effects by increasing his dose by 50 to 100 mcg every 2-3 days. That worked for me too. It almost completely stopped my side effects and I was able to go up to 6.4 mg methylfolate in just a few weeks.

    At exactly 6.4 mg it felt like somebody flipped a switch in my body and I had a big increase in energy. It's very clear to me now that I had a partial block in my methylation cycle that Rich van Konyenburg has written about extensively.

    His theory was that CFS was caused by a partial methylation block, which I don't believe is true. Although impaired methylation can cause significant problems.

    I think using sublingual tablets is better than the liquid. They are better absorbed because they take longer to dissolve. I have also heard Jarrow brand is a good one. Although I haven't noticed any difference with the 3-4 different brands I have used.

    Thank you. Happy to help in any way I can!!:)

    EDIT- If you are interested in buying from Swanson Vitamins, I can help you get a promo code for 10% off and 99 cent shipping on an order of at least $30.:)

    Last edited: Apr 27, 2018
    Colorado_Girl likes this.
  6. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    That sounds really promising! When I saw the genetic specialist, she said the 5mg my doctor prescribed was way too much and between the Methylcobalamin and Methylfolate she didn't want me taking over 1000mcg total. When I told her about the intense depression I was suffering, she didn't suggest increasing the methylfolate. Interesting how each practitioner is all over the place with their recommendations... Frustrating.

    I think the methylfolate scares me a bit, as I've read stories about people's potassium tanking, or they end up in the hospital. Normally supplements don't scare me like this one does. I haven't yet found a doctor who really knows a good protocol for it and I'm hesitant to experiment with this on my own.

    I saw Rich van Konyenburg's video, his list of detox symptoms reported by patients and his list of beneficial changes reported by patients and a lot of it hit home with me. Did you do his full protocol?
    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)

    I also see he's recommending Hydroxy B12 and not Methyl B12....?

    Uuuugh... I'm so confused :confused: It seems the deeper down the rabbit hole I go with this, the more confused I get...

    How long have you been on the 6.4mg of methylfolate? How much B12 are you taking? Have you had to lower your dose of methylfolate since being at 6.4mg?

    I do feel I'm on the right path with this and really think I'm close to finally finding the answer to my fatigue... I've done everything else, I think this is the last piece of the puzzle, I just need to find the right practitioner to aid me with it.

    I've been off all my supplements for a few days now due to the blood tests and I'm actually feeling a little better - go figure...

    Hope you're enjoying your Saturday!
  7. ljimbo42

    ljimbo42 Active Member

    I can't tell you how many posts I have read saying the same thing! That must be incredibly frustrating and confusing.

    I understand and that makes good sense.

    I did and am doing everything except for the Phosphatidyl Serine. I use methylcobalamin instead of hydroxycobalamin. Rich said after he wrote his original protocol that some with cfs/fm would do better with methylcobalamin and I am one that does.:)

    That is very easy to do!:eek::) If you can find a good doctor to help guide you it would be a godsend. I have just researched extensively and traveled WAY down many, many rabbit holes.:D

    I am only taking 3.8 mg of methylfolate now, I lowered the dose because of cost. Although I think I might increase it to see if it feel better without getting over-stimulated. That's one of the side effects of too high a dose of methylfolate, over-stimulation. I'm taking 3,750 mcg methylcobalamin.

    That happens to me also, at least temporarily, then I usually feel worse again. Unless I'm too high a dose to begin with. Lots of trial and error.

    Thank you. I hope you are enjoying yours as well! It's a beautiful day here in New Hampshire, sunny and about 67 degrees-spring has sprung!:)

  8. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Thanks again for the help! I'm enjoying the warmer weather as well! Bought a new bird feeder today and going to spend some time outside!

    I, like you, have done tons of research, but this whole MTHFR and methylfolate thing are new to me and I've only been researching for about a month or so. As soon as I get my blood work back, I'll be contacting some new docs with thorough knowledge of this MTHFR issue.

    I had one day a few weeks ago where I felt amazing - My thinking was crystal clear and I had great energy! I'm hoping to get that back and keep it permanent, but as you say, it's trial and error. At least now I know it's detox symptoms and knowing that, makes it easier to handle.

    Have you ever tried PQQ? I had never heard of it before, but it was suggested to me and I felt good the first day I took it, but then crashed again. I started taking a few new things at once, so now I'll have to start over, adding things back in slowly, but I'll get there, I'm too stubborn to give up!

  9. ljimbo42

    ljimbo42 Active Member

    Your welcome.:) I live in a building where my landlords have tons of flowers all around it. I often see hummingbirds, which I think are absolutely amazing little birds!!

    I have tried PQQ but didn't notice any benefits from it. I have read of others that have though. I also wonder if I took it long enough to get the biggest benefits. From what I understand it's suppose to increase the number of mitochondria we have, which should increase energy. That sounds like something that could take 2-3 months or longer to get the full benefits from.

    Been there and done that a few hundred times.:D What I have learned, to some degree-lol, is that it usually takes my body 3 days to adjust to any new supplements or increase in supplements. So I try to keep that in mind when doing so.

    I'm with you. I'm the same way, WAY to stubborn to give up!

  10. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    I hope you're still feeling good. I've been off my supplements now for 2 weeks, as my doctor hasn't done all my blood work yet, but my appointment is tomorrow, so things can finally get back to normal. (Thank goodness, as I've been exhausted lately!) I'm looking forward to trying the methylfolate, but I'm also dreading it. I've tried eating more high folate foods this week and I'm just getting headaches. I don't know if I mentioned this, but I have higher lead levels and now I'm concerned about some mercury toxicity too, as I had my amalgams removed in December. I think the higher folate foods are causing detox reactions, so I'm wondering if I just need to focus on getting the heavy metal toxicity lowered before considering the methylfolate...?

    I found Dr. Lynch's info on taking 1/2 pill of the Methylfolate/B12 lozenge and increasing the dose by 1/2 tablet every 7 days until one feels really good. This sounds like what happened to you. Did you experience detox symptoms the entire time? When you increased your dose did your symptoms get worse? I would be interested in hearing how your journey went.

    Do you have any knowledge about lowering heavy metal toxicity prior to trying the methylfolate, so my detox reactions aren't too severe? My plan is to get in the sauna more often, juice with cilantro, slowly increase my dose of chlorella and continue my vitamin C and Milk Thistle. I'm still going to see my doctor about this, but not until the end of the month and I'm just trying to get a head-start on things. I know it's going to take a while to detox and it's just leaving me frustrated, as I was doing so good at this time last year. I thought the worst of it was behind me. It seems trying to do the right thing and get the amalgams out may have created more issues for me. o_O

    Let me know your thoughts... Thanks!

  11. ljimbo42

    ljimbo42 Active Member

    I never tested for lead or mercury. Methylation is a big part of removing heavy metals from the body like lead and mercury. If I did have high levels, they should be normal now, because I've been treating methylation daily now for 3-4 years.

    The headaches you had from the higher folate foods makes sense. Headaches were one of my biggest detox symptoms from treating methylation. I think the best approach is to go very slow with diet and supplement changes and listen to your body. If you get big detox symptoms, I think it's best to slow down and maybe cut back on the changes you have made.

    Weather you need to lower your heavy metal load before treating methylation, I really don't know. I guess that would depend on how well you're able to improve your methylation, without too many detox symptoms.

    I really struggled for long time and was unable to tolerate even 50-100 mcg of methylfolate a day. Then I started increasing the methylfolate 50-100 mcg every 2-3 days and for some reason, that almost completely stopped my detox symptoms! Before that, I would get sick every time I took 50-100 mcg and the detox symptoms wouldn't go away. Methylcobalamin never gave me side effects at any dose.

    I don't have experience in lowering heavy metals. The other thing to consider is that it might not be heavy metals causing the detox symptoms. FM and CFS causes many, many, different toxins to build up in the body. Taking herbs that support liver detoxification, like milk thistle, dandelion root and/or burdock root, will help your body with detoxification. If the detox symptoms from treating methylation are too strong, you might want to support liver detox for several weeks. Then try methylation support again.

    It sounds like you are on the right track!:) My only suggestion might be, if you find that cilantro and chlorella are too strong and are causing a flaring of symptoms. You might want to switch to the milder herbs I mentioned.

    Hope you're having a good day!

  12. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Thanks for the info! I know it's going to be a slow process and it's going to involve trying various supplements to see what works. I am taking molybdenum and milk thistle, (niacin if necessary) and I'll look into the dandelion root and burdock root.

    The heavy metal combo with the MTHFR mutation seems to be a tricky issue. From what information I can find, it looks like I need to lower my body burden, while taking the methylfolate. It seems to be a catch 22 - lower heavy metals so detox isn't so severe when I start L-5-MTHF , but hard to detox if methylation pathways are an issue. o_O

    As far as the heavy metals, I know I have higher lead levels and after having several amalgams taken out in November/December of last year, I have continued to get worse. I'm exhausted on a daily basis and I'm getting weaker. (This is all after feeling great) There were some concerns of MS, but it looks like that has been ruled out. (Thank goodness!:)) I'm sure, as you suggested, there are other toxins that have built up, so I may end up doing another juice cleanse soon, or maybe doing Gerson therapy. I totally agree with your suggestion of supporting my liver.

    You said you've been treating methylation for 3-4 years, but your higher energy levels seem to be recent...? Did the higher methylfolate levels make the difference in your energy? What else are you doing to treat your methylation issues? Methylfolate seems to be another one of those catch-22 things. I've read that if you take even a small amount and feel sick, (Dr. Lynch) then you should back-off, but as you experienced (and even as Dr. Lynch suggests), higher doses can make you feel better - Talk about confusing! :confused:o_O Take it, back off, lower the dose, increase the dose, back off, take it, lower the dose, increase the dose...

    I guess it's just going to be a lot of trial and error... I'm trying to keep my spirits up as I used to be so active and now I just feel like a shell of myself. I had to get an extension on my taxes, as it's been extremely difficult to get my paperwork together. My appointment is next week and I'm only able to put in an hour or two a few times a week - and that's a struggle. I've backed off on any detoxing supplements for now until I can get this done, I'm just doing more support for now. The depression is tough at times, but I'm trying to keep in mind, it's just the detoxing. Sitting in my house on a daily basis is getting REALLY old! I want to get out , but when you feel like crud, it's tough.

    Thanks for the support, it sounds like you can totally relate.

  13. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    The higher doses of methylfolate did increase my energy quite a lot but then my energy increase leveled off, I didn't continue to heal. So I started to look for other things that could be still causing my fatigue. That's when I found that dysbiosis and increased intestinal permeability could cause all kinds of problems, not the least of which is impaired methylation.

    So, just over a year ago I started to treat gut issues, that's when my energy started to increase and has continued to, month to month ever since. :)

    Yes, it really can be very confusing sometimes. I think a big reason it is, is because even with the same illness, each of us are affected differently on a biochemical level. So what works for one person, doesn't always work for someone else, BUT it might!:Do_O

    I've been doing something very similar. I have a bunch of paper work to put together and have step one of a three part process done. Like you, I stopped increasing my supplements, so I would have a clearer head and more energy. I just started taking olive leaf extract last night, which I have been putting off for about 2 weeks, so I could get the paperwork together and make the necessary phone calls without too much brain fog and fatigue.

    I don't know if I experience depression but my thinking can get really messed up and convince me that I haven't made any progress and never will, in a heartbeat, especially when I'm in a flare, experiencing PEM or detoxing. That's when it takes a lot for me to remind myself of how far I have come and that I am consistently improving, regardless of what my negative thinking tells me.

    I feel the same way, especially now that the weather is so nice! I would like to get out more but I've only got so much energy and that will only take me so far. It's really not worth paying the price of PEM or a flare, for going out and doing more.

    Your welcome and yes I can really relate to your experience in MANY ways!:eek:;):)

  14. Colorado_Girl

    Colorado_Girl Member

    Hi Jim,

    Are you getting out and being social at all? I know when I'm social, it always seems to help with my energy levels. I got out this morning and it definitely helped, but once I got home, had lunch and sat on the couch, it was time for a nap!

    I started the B12/Methylfolate 1/2 tab a day and I'm on day 4. I'm also taking 2 chlorella tabs per day and will most likely increase it to 3 tomorrow. I've been adding in Cell Food as well and that seems to be helping with energy, although it's been fleeting. I have noticed I've been sweating more in the sauna, which is good and I'm making sure to maintain hydration and electrolytes.

    I'm not too familiar with PEM, but I used to deal with flares quite a bit when my Fibro was at its worst. I haven't dealt with a flare in ages, but I had a major stressor in March and then things got really bad. The only stress I'm dealing with now is what is causing this setback and why my fatigue has gotten so bad. I've been seeing functional medicine doctors since 2014, so I've had a lot of guidance and done an enormous amount of research on my own, but the mystery remains... I refuse to accept this as my existence.

    Great to hear you are focusing on your gut and so glad your energy continuing to improve! Did you get checked for food sensitivities? Or have you tried an elimination diet to find out if you have food triggers? I found out that some healthy foods I was eating were affecting me. My autoimmune disorder was at a level 5/6, with 6/6 being the worst. Through diet I was able to bring my numbers down and am now at a level 1/6 - (Just over normal). I'm still working to get my numbers completely normal and I know the only way is through my gut. I'll be doing another juice cleanse in June (After my paperwork and doctor appointments are out of the way) Have you ever seen Fat, Sick and Nearly Dead? Pretty amazing documentary on how Joe Cross cured himself of an autoimmune disorder. I'm a big fan of his and of the process. I try to juice as often as possible. It's not a new process, pioneers in the medical field have been curing illnesses with this method for years. Do you juice?

    I'm sure with all your research, you've discovered Dr Axe's website. I think he has one of the best websites and programs out there for healing leaky gut. On another note, have you looked into a ketogenic diet? Every expert in the field seems to be recommending it. It doesn't work for me, it just made me put on weight, but I do try to add in healthy fats every day. I did notice that the higher fats did help with my brain fog. There's also a great book by Terry Wahls, who's an MD and has made remarkable strides with her MS through diet. She is no longer in a wheelchair and is back working full time.

    I've been off gluten for 3 years, I don't eat grains, no dairy (it actually makes me depressed), no soy, no sugar, no processed foods - it's pretty much animal proteins and fruits and veggies. I know the animal proteins can affect my mutation, so I need to cut back on some of those and increase the veggies. I've been eating a lot more avocados, which I discovered is great for my mutation - folates and potassium! :)

    I think one of the reasons I'm so frustrated is I seem to be doing everything right - diet, gut issues, sleep, dental work, (not only did the amalgams come out, I had a root canal removed too!) I do stress management, stretching, etc. My naturopath says I'm on all the right supplements and doing all the right things, which makes it even more mysterious. If the methylfolate doesn't help, I'm really going to be perplexed :confused:o_O I won't stop doing what I'm doing, but the mystery will continue...

    I totally get what you're saying about not making progress and how your thinking can get screwed up. Like I mentioned above, I discovered when I would cheat and have dairy that I would get EXTREMELY depressed and there was definitely some ugly crying going on. The recent detoxing is screwing with me again and last night I had to just tell myself - This is good! This mean's you're getting the ugly out! :D

    Wow, I wrote a lot tonight! (Didn't mean to!) If you need some sleep, you can read this! ;)

    Hope you have a great weekend!

  15. Mandyspike

    Mandyspike Active Member

    Hi Jim, how are your energy levels these days? Are you still able to get out and about? I hope so because I know you enjoyed your little strolls. I went out for a two hour walk at 7.00 this morning. There was no one about so it was bliss. I really enjoyed myself.
    Has the weather been good to you? It’s been lovely here today and I have even managed to do a bit of sunbathing this afternoon. I am trying to get myself a bit of colour before we go away at the end of the month. Just under two weeks now before we board that plane. I am already feeling nervous.
    I continue to feel extremely well. I have had no symptoms for weeks now which feels great!, I hope that all will be well with me while I am in Cyprus. I think we always live under threat don’t we?
    My sleeping has really improved. Not brilliant but I am happy. I get by let’s put it that way.
    Do you still get to get a bit of singing in? I am sure you do.
    Is your Son and his girlfriend doing ok? Any plans for a wedding?
    We have been corresponding about four years now. Where has that time gone?
    Well I have no more news Jim
    Enjoy the rest of your day
  16. ljimbo42

    ljimbo42 Active Member

    Hi Mandy- My energy levels are pretty good and I go out walking 2-3 times a week. WOW a 2 hour walk! That's quite a stroll. Early in the morning can be quite peaceful. :) The weather here has been really nice.

    When I feel nervous about something, I try to just focus on rate where I am. That helps to set aside the worry but I have to remind myself often of where I am.:D

    It's always good to hear you are doing so well.

    I think we do. I know somebody that got CFS and recovered from it 3 times. The good news is now he knows exactly what to do if he feels like he might be going back into CFS. He has been 100% recovered now for several years.

    I still sing 2-3 times a week. The more I recover from CFS the more enjoyable the singing is. My son and his girlfriend broke-up, unfortunately. He is doing well though. I can't believe it's been 4 years that we've been talking!! It does go by fast.

    Hope you have a great day and the UK weather is kind to you.:)

  17. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    I am getting out now and then and it does help with my energy levels also.

    I think that's a good attitude to have! I use to be mostly bedridden, so experience tells me there is a lot I can do to get healthier.

    I did get checked for food sensitivities but only had a few very low sensitivities. Mostly to food I rarely or never eat.

    I don't know much about how they measured your autoimmune disorder but that kind of improvement seems impressive!:)

    I have not seen that but it sounds interesting. I don't juice much anymore because I don't have a car, so it's hard to get the fresh fruits and veggies I need. I am a big believer in it's health benefits though! I do get several lemons every few weeks or so and make fresh lemonade with them.

    I have tried it but for some reason I couldn't get past the keto flu, even after 5-6 weeks. That was enough torture for me.:D I thinks it's a great diet though for leaky gut and dysbiosis.

    Treating these kind of disorders is often very puzzling, for the very reasons you mention. You do everything right but still are fighting the illness. I think persistence is key to getting well.

    It still amazes me how much flares can mess up my thinking. Although it's not nearly as bad now as it use to be. They use to completely turn my thinking around sometimes and make me feel like, not only was I not making any progress but I never had!! Even though I had made big progress.

    I think there is some low grade brain inflammation that is causing this. There has been 1-2 studies that have shown low grade brain inflammation in CFS and I believe FM is just a different expression of the same illness.

    I'm going to read this again tonight to help me drift off!:):D;)

    Colorado_Girl likes this.
  18. Colorado_Girl

    Colorado_Girl Member

    Hi Jim and Mandy!

    Mandy - Are you looking forward to the Royal Wedding?? I'm so excited and have set my DVR for 3 or 4 different channels. I won't be getting up at 3:00 a.m. to watch it, but I will be watching it when I wake up :)

    Jim - Funny guy ;) Unfortunately, I don't think this message will put you to sleep!

    Great news! I am on day 4 of feeling amazing! No naps at all this week and yesterday I worked for 5 hours in the yard! I didn't feel like an old lady or like I had a 50lb bag of cement on my chest! I played with the dogs, walked all over the place (13,000+ steps) and was in a great mood. I figured today would be the true test since I did so much yesterday, but today I feel great too! (A bit less energy, but it feels like my muscles are repairing themselves like they should!) I did a hard 20 minute workout on the treadmill this morning (5.5% grade at 3.5 mph) and 11 flights of stairs. I did my posture stretches and when getting up off the floor I didn't feel any difficulty. I am SO excited! :D I bought a bottle of Champagne and will be celebrating this weekend!

    I think the chlorella is definitely helping, along with the Cell Food and I am taking 1 full tablet of the B12/L-5-MTHF. I just added in Cilantro today, but am going VERY slowly so I don't get any heavy detox reactions. I'm not getting any headaches, I'm finally sweating normally - usually I could never break a sweat and the heat does not seem to be affecting me the way it used to.

    There's still that scary little part of me wondering how long this is going to last, but this feels different, it feels like the answer. The funny thing is - I don't know which supplement actually made the difference, as I added in the Cell Food, B12/Methylfolate and Chlorella all at the same time - I know those are 3 supplements I will never be without!

    Well I'm off to do laundry and clean the house - I've never been this excited to clean! :)

    Hope you are both doing well and continue to improve!

    ljimbo42 likes this.
  19. Colorado_Girl

    Colorado_Girl Member

    Update - So I received back some blood results yesterday and between my iron levels and my genetics, it looks like I have Hereditary Hemochromatosis (HH) - It's a disease where too much iron builds up in the body. This would make so much sense! As I was eating foods to help my MTHFR mutation, I was actually contributing to the HH condition!! And guess what the top symptoms are? Chronic Fatigue, Joint Pain and Weakness! The standard iron tests weren't catching it, but this new doc tested for the right thing! Yay!

    I learned with this illness, one of the easiest ways to remove iron from the blood is to have regular blood draws. These could be weekly, or just a few times a month depending on how high one's levels are. I also discovered that the curcumin and quercetin I'm taking for leaky gut and inflammation can help the HH. I won't know how often I'll need blood draws until I see my doc at the end of the month, but in the meantime, I'll be altering my diet to avoid red meat and high iron foods and supplements.

    Last edited: May 18, 2018
    ljimbo42 likes this.
  20. ljimbo42

    ljimbo42 Active Member

    Hi CG-

    I wonder how much relief you'll get in your symptoms once this is controlled. There really are so many things that can cause fatigue, joint pain etc.

    I had very high iron levels once. My doctor wanted me to do blood draws to bring it down. When he told me that, I remembered all the cereal I had been eating and how high in iron it was. I didn't need to do the blood draws, I just stopped eating that particular cereal.

    High iron levels also cause high levels of oxidative stress and in CFS or FM and we already have very high levels of oxidative stress. I think it causes many symptoms in both cfs and fm, because it interferes with mitochondrial function. Which is another whole can of worms!;)

    That's good.:) I'm also taking both of these for inflammation and leaky gut. I think they are very important for gut health and inflammation in general.

    How are you doing with the methylfolate/methylcobalamin?

    I'm really happy to here you have been doing so well! I hope it continues!