IAN... Need your help....

Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Feb 22, 2013.

  1. Here is the list of supplements I take:

    1) Vitamin C powder (as Calcium Ascorbate)- 4200 mg/day
    2) Super Enzymes by NOW taken before eating anything
    3) Calcium, Magnesium, Zinc by SOLARAY- (500mg, 250 mg, 12.5 mg)/day
    * includes 50 mg Glutamic Acid HCl
    4) "Just Once" (Iron-free) Mult-vitamin
    5) Vit. B-6 - 50 mg/2xday
    6) Pantothenic Acid- 500 mg/2xday
    7) R-Lipoic Acid - 100mg/1xday
    8) RELORA- 250 mg/2xday
    9) Udo's Choice Oil (plant-derived essential fatty acids)- 1 TBSP/day
    10) L-Glutathione capsules- 250 mg/3xday
    11) Black Current Seed Oil- 600 mg/1xday
    12) Reduced form Co-Q10 (Ubiquinol/ QH-Absorb)- 100 mg/3xday
    13) Niacinamide- 500 mg/3xday
    14) NAC- 500 mg/1xday
    15) Grapeseed Extract- 100 mg/2xday
    16) Acidophilus (kyo-dophilus)- 2xday
    17) Vit. D3- 5000 IU/day
    18) 5-MTHF (L-5-Methylhydrotetrafolate)- 1 mg/day
    * I have 2 copies of MTHFR mutation
    19) D-Ribose- 2.2 g/1xday
    20) Glycine- 2 g/1xday
    21) L-Carnitine- 500 mg/1xday
    22) Sub-lingual B-12 - 3000 mcg/1xday
    23) Westhroid (natural thyroid replacement)- 65 mg/ morning and 32.5 mg/ noon
    24) Bio-identical hormones (sublingual and cream form)
    25) Vit. E Oil - 400 IU/night

    Sleep Supplements:
    1) Relax-All- 3 capsules
    2) Magnesium Glycinate- 2 caps @ 250mg/night
    3) Lemon Balm- 1 cap @ 500 mg
    4) Sub-lingual Melatonin- 5 mg

    I know this is a ton of stuff, so I appreciate you looking it over and giving me your advice. Thanks so much, Ian...


    [This Message was Edited on 03/17/2013]
    [This Message was Edited on 04/16/2013]
  2. ... for your input... Don't mind you peeking at all...

    Haven't had labs done for a few months now... Still searching for a decent doctor... Like trying to find a needle in a haystack in my neck of the woods...

    I think my potassium has always been in the normal range... Although maybe low/normal... I'm not sure what "CRP" levels refers to...

    As far as the Westhroid... I actually went up on my dosage in early December, from 1 1/4 grains to 1 1/2 grains...

    Don't know what I'm going to do... Something (or things) is def out of whack... And I just don't have any strength left right now to fight back... Feel like I'm drowning here... My husband WANTS to help but has no idea HOW to help... So I am essentially on my own...

    And I don't have the energy or strength to keep trying doctors that are not integrative... I tried 2 diff ones in early December and it was a big waste of energy that I paid a dear price for...

    But I'm glad you've found some things that are helping you... Perhaps the potassium would help me... Not familiar with the Anatabloc you mentioned...

    Thanks again, Jam..

  3. I'm so glad you are having success with the Anatabloc... And I do believe too that many of us deal with inflammation in our bodies...

    As for me, pain is not my primary problem, although at times it can be. I do have frequent joint pain and stiffness, along with muscle pain if I overdo...

    But the overriding problem for me is profound and debilitating weakness, along with nausea and other digestive issues, and neurological symptoms that can be torturous at times.

    Also, the effects on my brain (cognitive function and ability to process and think straight) are problematic as well...

    ME/CFS is such a complicated illness that it overwhelms me at times... Like right now, for instance... It seems the more I try to read up on it, the more confused I get... And this is from someone who made mostly straight A's in school and college... A brain is a terrible thing to lose...

    Just wish I could get some relief... I'm going to try increasing my potassium and see if that helps... Hoping and praying...

    Thanks again, jam...

  4. IanH

    IanH Active Member

    How long have you been taking the following:

    bio-identical hormones (prescription I assume)
    Sub-lingual melatonin
    The product which contains glutamate (glutamic acid)

    [This Message was Edited on 02/24/2013]
  5. mbofov

    mbofov Active Member

    Your adrenals may be wiped out. Weak adrenals cause profound and debilitating fatigue. All the stress you've been udner with your father and even before (I remember how worried you were about a medical procedure you had several months ago) hits the adrenals hard.

    My chiro who does muscle testing helped me enormously with this. Several years ago I was weak as a kitten, had no idea what was going on, the docs were useless of course. I saw my chiro and within a few minutes he'd picked up that my adrenals were wiped out. I had been under chronic severe stress for many years. He gave me an adrenal glandular - Drenatrophin PMG by Standard Process. I had to take about 3 times the normal dose for maybe 2 weeks (and a maintenance dose for several months thereafter), but just within a couple of days my energy started to pick up. Pantothenic acid is also very important for the adrenals, and I had to take extra pantothenic acid, besides a good B complex.

    Also, learning to deal with stress is very important. Meditation is one of the best things for it. Also, avoid or go easy on sugar, caffeine and alcohol which all deplete the adrenals.

    Re your nausea and other digestive issues - again my my chiro hleped with several digestive problems. I ended up having to take hydrochloric acid with meals. Digestive enzyjmes alone were not enough. I also had to do a liver detox. Anyways, again I would have been lost without my chiropractor.

    I think there's help for you. If you go to the Standard Process website, customer service will give you the names of practitioners in your area who use their products, and hence do muscle testing. Or you can just call chiros from the phone book and ask.

    I had been sick for about 7 years before I found my chiropractor and he helped more in a few minutes than all the doctors I'd seen in that time.

    Re potassium - mine was "low-normal", actually at the bottom of teh normal range, but still "normal" but my energy increased when I started taking it daily (400 mg.) I know I've recommended this to you before, it may be part of the problem, but it really sounds like your adrenals are involved.

    Take care -

  6. I've been taking each of those for years... since around 2006... the Relax-All, I've been on for a couple years... However, towards the end of November and into December, I had to get off of the Relax-All for about three weeks because it just suddenly stopped working.

    It was a nightmare though, because I kept trying different things and nothing else seemed to be working... so I was dealing with insomnia for those 3 weeks.

    And yes, the bio-identical hormones are by prescription...

    Oh, and the supplememt I started most recently is the NAC (N acetyl Cysteine)... started it a few weeks ago... I started the d-ribose and glycine in December (which seemed to give me a boost for a time)... but then I noticed I was gaining weight for no apparent reason and my nephew, who is a body builder and majored in Kinesiology, told me that glycine CAN cause weight gain if you're not working out.

    Then I stopped the glycine for a few days but noticed a downward turn in how I was feeling (may have just been coincidental since I had started the NAC around the same time and my dad's cancer crisis hit about that time too) but I started back on the glycine again, in case it was helping me...

    [This Message was Edited on 02/24/2013]
  7. mbofov

    mbofov Active Member

    One more thing - on a different post I saw you mention sore throat. Chronic sore throats can be a sign of pantothenic acid deficiency - generally brought on by chronic stress.

    I used to get sore throats every time I got over tired or over did it, but not any more, and I'm pretty sure it's because I've gotten my adrenals in much better shape.

  8. ... Thank you so much for your help and input... Means more than you know...

    I've been taking RELORA for a couple of months now for adrenals (one of the things you had suggested to me back in December, I think)... And I also take 500 mg of Pantothenic Acid twice a day... Should those be enough to help my adrenals? Or should I look into the Standard Process?

    It's just so hard to figure all this out sometimes... Can be overwhelming... Like everyone else here, I just want to feel better and get my strength back .... so I can contribute to this world and to my family...

    I'm so happy for you that you have found what works for you and are doing much better these days... And I appreciate all your help more than I can say...

    Gob bless you, Mary!

    Blessings and Gentle Hugs,
    [This Message was Edited on 02/25/2013]
  9. MicheleK

    MicheleK Member

    Hi Shel,

    Sounds like a lot of separate supplements. You could be overloading your system.

    And I will say it again. You have been through a tremendous amount of stress this past year. Stress is a deal breaker with this disease and it must be met with counter measures.

    Those counter measures can include some supplements but you really need sleep, deep breathing all throughout the day, peaceful thoughts, guided imagery, prayer or meditation and a surrender to a good long rest in your mind. A couple months of a good long mental rest will help the body get to a better place.

    We can't avoid stressors such as the illness of your father but to help our body deal with such things we really have to find a few good tools for calming the mind and getting oxygen flowing throughout your body, as well as a good diet.

    I hope Ian will help you figure out which of those supplements to keep and which to put aside till your body is in a better place. Or perhaps find a supplement that provides many of those nutrients in a more wholly balanced way.

    When we eat foods rich in nutrients wonderful chemistry results and nourishes our bodies. it is the same with nutritional supplements. If we can find a few products that produce a wonderful chemistry, that can be more helpful than an army of separate supplements.

    Wishing you better times ahead.

    Love to you,
  10. mbofov

    mbofov Active Member

    I remember recommending the relora to help normalize cortisol levels, if your cortisol was high, and it sounded like it was. I think this was to help with sleep, as I recall.

    But - if your adrenals are wiped out, you may need an adrenal glandular as well. It's good you're taking the pantothenic acid.

    I can't say for sure what you need. I saw your other post about potassium helping you to feel better, so I can only guess.

    I will repeat that I think a good chiro who does muscle testing can be invaluable. Mine found my weak adrenals and helped me so much there.

    He also helped me with several digestive issues I had. He saved my gallbladder. He got my digestion working properly. I did a liver detox with him. A lot of stuff.

    If I were you, I would do one thing at a time. Since the potassium seems to be helping you, I would work with that initially. When I first took potassium, I was very nervous because everything written about it says, be careful! watch out! etc. And then when I read in more depth, I found the amounts I take are very small and it's very hard to take too much orally. Someone suggested a potato a day, but I don't think it would be enough. You did research on why people with CFS tend to be low in potassium. And it has helped me a lot.

    But - at one time I also very much needed the adrenal glandular, as well as the Seriphos (I took that instead of relora), and pantothenic acid. I think it's well worth looking into, and again, with all your stress, you may need it. But I can't say for sure. Just read about it, and maybe find a chiro. He or she can potentially help with all sorts of things, including weak adrenals. I think I would have ended up bedridden wtihout my chiropractor. I was so weak from my adrenals and my digestion was so screwed up and the regular docs were so helpless.

  11. IanH

    IanH Active Member

    Do you have or have had asthma or respiratory allergic depression or extreme tiredness from respiratory conditions such as asthma? This can appear as extreme exhaustion affecting breathing.

    Also why do you take an iron free multi? Are your iron levels high? Are your ferritin levels high?

    The weakness you are referring to, is it the fatigue you have felt in the past due to ME/CFS or different?
    [This Message was Edited on 02/25/2013]
  12. No asthma or respiratory conditions that I know of, aside from the shortness of breath when my ME/CFS is at its worse. And sometimes the weakness is so profound that my breathing can become very shallow...

    Regarding the iron, I took that and copper out a while ago when I had read (long before I found this site and shortly after getting my ME/CFS diagnosis) somewhere in the midst of my research that folks with ME/CFS shouldn't take supps with iron and copper... But I can't remember why now (my memory isn't so good anymore). And since menopause kicked in a couple years ago, I didn't think I needed the iron anymore anyway. But if that's wrong, please let me know... ( and no, my iron and ferritin levels have never been high)...

    The fatigue and weakness I was feeling was similar to the the ME/CFS symptoms I've experienced before, yet a little different in that instead of improving with rest, it was getting slowly worse...
  13. LadyCarol

    LadyCarol Member

    In addition to what Ian has already highlighted; shortness of breath or gasping for breath with rapid shallow breathing could be caused by an allergic reaction to one or more of the supplements you are taking. To work out which one(s) you would need to ascertain by process of elimination. A step by step approach would be needed with such a large list supplements.

    In addition since you mentioned you are slowly getting worse it may be an indication of a possible toxic overload, in which case a process of elimination (as per above) may find you actually start to improve and feel a bit better.
  14. IanH

    IanH Active Member

    And what Dr. Oz once covered on his program about fatigue and progressive weakness.
    see here :


    I would suggest you start slow deep breathing exercises to increase your oxygen intake and improve the status of your chest muscles. It is now well established that your maxO2 is important in the fatigue/weakness of ME/CFS, especially post stress.

    Leave you supplements for now, perhaps adding the potassium (two 99mg twice)

    However you should look to reviewing your total supplement intake in time.
    [This Message was Edited on 02/26/2013]
  15. ... I'm actually doing better now that I'm taking some supplemental potassium... I'm pretty sure I was tanking because of low potassium... I have had that once before a couple years ago and wound up in the hospital (not knowing at the time what was going on) and after labs they gave me potassium through my I.V....

    So since I'm doing better, I don't think I'm having a reaction to the any of the supps I'm taking... Although I'm not sure if adding the NAC recently could possibly be causing a detox reaction, perhaps???

    I do wish I didn't have to take so many supps... I would rather just take the essential ones but want to make sure I'm taking the proper amounts that will give me the best results. I'm concerned that I may be taking too much of some and not enough of others (like the Carnitine, for instance... Wondering if I should take 2 of those per day rather than 1).

    Also, I need to get some sub-lingual glutathione since the capsules I take by mouth are not really getting past my gut. However, our health food store here doesn't carry the sublingual form, so I need some input from others here as to where to get the sublingual glutathione and in what amount. I know glutathione is crucial for ME/CFS.

    On another thread ("Mitochondrial Tests") I recently posted about what I think may have caused my drop in potassium levels...

    But thank you so much for your input and for caring, Lady Carol... God bless you!

    Blessings and Gentle Hugs,
  16. ... For your suggestions and caring...

    I know you're right when you say that all the stress and emotional upheaval have surely impacted my condition... And when I'm not too weak to move or even think sometimes, I do have quiet time with The Lord... In His Word, in devotionals and in prayer, which helps me immensely.

    But sometimes, like last week, when my brain is barely working and I am getting weaker and weaker and cant sit up or read, those are the most difficult times that can be the scariest and get me to my breaking point...

    I'm just so thankful for this board and for the discussion on low potassium, because I really think that saved me. I knew something was dreadfully wrong in my body but was afraid to go to the hospital because of bad experiences in the past. So this board is truly a lifesaver and a blessing...

    I am still hoping Ian will let me know what supps and amounts I should be taking... I agree that I am taking a ton of supps and would rather take less... But I'll do whatever I need to do if it will help me be able to function more...

    Thanks again, Michele, for your support and caring! I'm so glad that you are doing much better these days! It's an answer to prayer! Hope you continue on this upward turn! God bless you!

    Blessings and Gentle Hugs,
  17. ... for all your help and support... Means more than I can say...

    I'm so glad you found someone who was so helpful for you... Now that I think of it, I did try something similar to what you describe a few years ago, before I knew that ME/CFS was what I was suffering from... And I don't remember if it helped or not... I know that sounds crazy to say I don't remember... But that was even before my illness progressed to the level it is now.

    I did go to a chiro and he put me on a special diet (no sugar, no dairy, no grains of any kind and only certain vegetables and meats were allowed... and no fruit at first... very difficult, but I did it by the hardest) and the food-based supps he had me on, I think may have been the " Standard Process" you mentioned... But I do remember that all the supps he had me on were very hard for me to get down my throat, so I had to crush them.

    Not sure if I should try that again or not... But I will consider that. Thanks for sharing about the potassium too! I feel that was a lifesaver... So thanks so much, Mary!

    I'm so glad you're doing better these days, Mary! Thank you for caring and for all your help! You are a blessing! God bless you!

    Blessings and Gentle Hugs,

  18. I referred to the wrong thread in my post to you,,, instead of "mitochondrial tests", I should have said the thread titled, "How much potassium is safe to take?"
  19. I appreciate your input... I will check that link out and work on some deep breathing... I don't usually think about the breathing, but you make a very valid point, as have some others here about the importance of increasing oxygen intake by slow, deep breathing... Although sometimes I do worry about the air quality where I live.

    But, I'm not comfortable stopping all my supps... Even if I keep the potassium. There are certain things that I take that I know are vital... Such as the folate, since I have 2 copies of the MTHFR mutation... Also the Udo's choice oil (essential fatty acids) has helped keep my joints from being so stiff and hurting.... The acidophilus helps my gut flora, which I need badly. And I know glutathione is key... I just haven't been taking the right form.... Need to get the sublingual.

    I was hoping you could help me zero in on the correct amounts of the things I'm taking. Although, I must admit, I would love to not take so many pills... Thankfully some of my supps are in liquid or powder form... I either take them in juice or tea... But along the way, I had read how important L-Carnitine and the Lipoic acid was to folks with ME/CFS, so I added that... I just want to make sure I'm taking the right amounts...

    And Dr. Myhill talks about the importance of d-ribose... But maybe there are some others I could cut out... Do I need the NAC if I'm taking glutathione (or vice versa)... Which of the two, do you think are more important? Or better for folks with ME/CFS?

    Thanks again for your help, Ian... I appreciate it more than you know... God bless you...

    [This Message was Edited on 03/01/2013]
  20. IanH

    IanH Active Member

    We use supplements here as well as other medications prescribed by the GP or Neurologist to get a person to a particular point where they can increase their exercise and build muscle strength, flexibilty and stamina. In addition to help them develop better stress management systems. That is they are a bridging tool mainly. Some people stay on some supplements "permanently" eg vitamin B12 is a common permanent supplement as is methyl folate. Ribose has been a permanent for people with FM but not for people with just ME. However I would not rule it out for ME/CFS. (Bearing in mind that we are a small university clinic). We are currently trialling NAC and now sublingual glutahione.

    VitaminD is also a permanent supplement for many. While it is not a symptom reducer in ME/CFS it is a long term prophylactic as an anti-inflammatory, antibiotic and epigenetic controller.

    I noted someone saying they were having trouble sleeping and pinpointed vitaminD. I am not sure what form they are taking or what dose but Vitamin D3 is not known to interfere with sleep but calcium does. It is always important to take the co-factors with vitamin D3, ie magnesium (50mg per 800IU), zinc (12.5mg daily or 25mg once every two days), vitamin K2 (100-800mcg).

    It looks as though you may be finding potassium a help so wait until that is shown to help or not, possibly two weeks. Then I would suggest dropping the more marginal items. Some items are unlikely to be a problem and probably help you in other ways. I will go back and have another look at your list and make a recommendation for you to think about. I have to get to work right now.
    [This Message was Edited on 03/01/2013]