Recently started a new regimen for CFS, Iodine making me feel awful, i have questions....

Discussion in 'Fibromyalgia Main Forum' started by fairytalenightmare, Oct 8, 2014.

  1. Hi everyone.

    M.E and Fibro sufferer for 20 years. Some years have been better than others but initially i was bed ridden for 2 years solid, after getting glandular fever.
    I am now 32 and have a little boy, life isn't just about me but my family also and so i have decided to start trying
    everything i can to help me get my life back, so I started Dr. Myhill's suggestions re:supplements and vitamins.

    I am taking the following as of 5 days ago.

    Vitamin B12 transdermal spray- 10 sprays a day
    Vitamin D3- 4 pills a day
    Co Q10 - 2 pills a day
    Magnesium- 20 sprays daily
    D-Ribose - 1 time a day
    Iodine- 1 time a day
    Nianicimide- 1 a day
    L-carnatine - 2 scoops a day
    1 scoop of Fatigued to fantastic a day

    I was very excited, i have had b12 shots before and they were amazing, the spray is supposed to be as good as.
    After doing research however I have found that the iodine may be a problem? I have been weaker than usual, lots of pain and very lethargic, one day was so bad i could hardly get to the bathroom by myself.

    Is there anyone who has been on this regimen and seen improvements ?
    Also, how long are these side effects likely to last?

    thanks so much <3
  2. IanH

    IanH Active Member

    Firstly the regime is a reasonable one at face value.
    the iodine is not essential so drop it for now and see how you go.

    You have not stated any doses. Doses are important for some of the items. Can you list your doses please?

    You are basically missing the methylation support items (which also support mitochondrial function):
    folate as in MTHF (methyltetrahydrofolic acid)
    a sulphur containing antioxidant (glutathione substrates) such as NAC (N-acetyl cysteine) or S-adenosyl methionine or glutathione sublingual
    These two (folate and glu substrates) are more important than the D-ribose or the niacin, however D-ribose and niacin are not unimportant.

    I have noticed before that Sarah Myhill misses folate and glutathione substrates but they are important.

    Why are you taking magnesium by spray? Is it a transdermal spray because if it is these are not very effective at delivering the required magnesium. Also if you can afford it Magnesium Threonate is by far the best form.

    You are also missing vitamin K2 complex. Very important to go along with your vitamin D.
    You are also missing zinc which is critical in immune system modulation and again goes with the vitamin D. Also taking magnesium without zinc is not advisable for too long and this is a long term regime.

    Lastly, it is critical to reduce sugar intake. I don't know what your sugar intake is like but normally I would assess sugar intake. the less sugar you take in the better. It is also important not to replace sugar with sugar substitutes because most of them induce some pro inflammatory markers and alter gut balance.
    Last edited: Oct 8, 2014
  3. Hi Ian, thanks so much for all that info. I have gone and bought the following.

    NAC 600 mg free form
    zinc nitrate 30 mg
    vitamin k2 from natto extract 100 ug.

    And here are the doses i have been taking of each, apologise i didn't mention this before.

    Vitamin B12 transdermal spray- 10 sprays a day. 1 ml of solution contains 5mg (5,000micrograms) of vitamin B12 as methylcobalamin in DMSO - an organic sulphur carrier molecule derived from tree bark. Used transdermally about 6% is absorbed - this compares with the gut where only 1% may be absorbed.

    Vitamin D3- 4 pills a day- The form of vitamin D in this product is cholecalciferol. 1,000 IU

    Co Q10 - 2 pills a day 100mg

    Magnesium- 20 sprays of transdermal - 375mg Magnesium Chloride per ml equivalent to 45 mgs per ml (5 sprays) of elemental magnesium.20% DMSO - an organic sulphur carrier molecule derived from tree bark.

    D-Ribose - 1 time a day to start and then build dose up , 500gms

    Iodine- 1 time a day , IODORX (EQUIVALENT TO IODORAL) not sure of dose

    Nianicimide- 1 a day Contains Niacin (as Inositol Hexanicotinate) 500 MGS

    L-carnatine - 1 scoop halved taken twice a day, One scoop of acetyl-L-carnitine contains one gram. A typical daily dose would be 1-2 grams.

    1 scoop of Fatigued to fantastic a day ( when this runs out i think i might take a multi vitamin instead)

    Im all out of money now LOL so this is going to have to do, is there anything i need to be especially concentrating on, and is there any way of making L-carnatine taste better? yeuch! ;)
    Last edited: Oct 9, 2014
  4. IanH

    IanH Active Member

    Sounds good. Are you still having the problem symptoms? Are you still thinking it is the iodine?
    Do you know what type and amount of folate is in the Fatigued to fantastic formulation?

    I know what you mean about the carnitine it is very putrid and sour. Don't try tasting the NAC, it tastes like rotten eggs plus sour.
  5. Im not sure folate is in Fatigued to fantastic? Here is the information i was able to get on what is in it.
    Well today i feel pretty good, better than i have in a while, have managed to get some chores done and still feel ok :) Didnt take the iodine yesterday, so maybe i cracked it? but what will i be missing out on by not taking it i wonder?

    Serving Size: 1 level scoop (20.4 g)

    Servings per container: 30
    Amount per level scoop
    Calories 55
    Total Fat <1 g <1%**
    Cholesterol 10 mg 3%**
    Total Carbohydrate 5 g 2%**
    Dietary Fiber 2 g 8%**
    Sugars <1 g
    Protein 6 g 12%**

    Vitamin A (55% as beta carotene and as retinyl acetate) 4,500 IU 90%

    Vitamin C (ascorbic acid) 750 mg 1,250%

    Vitamin D (as cholecalciferol) 2,000 IU 500%

    Vitamin E (as d-alpha tocopheryl acetate) 100 IU 333%

    Vitamin K (as phytonadione) 100 mcg 125%

    Thiamin (as thiamin HCl) (vitamin B1) 75 mg 5,000%

    Riboflavin (vitamin B2) 75 mg 4,412%

    Niacin (as niacinamide) 50 mg 250%

    Vitamin B6 (as pyridoxine HCl) 85 mg 4,250%

    Folic Acid 400 mcg 100%

    Vitamin B12 (as cyanocobalamin) 500 mcg 8,333%

    Biotin 200 mcg 67%

    Pantothenic Acid (as calcium D-pantothenate) 50 mg 500%

    Calcium 100 mg 10%

    Iodine (as potassium iodide) 200 mcg 133%

    Magnesium (as magnesium glycinate) 200 mg 50%

    Zinc (as zinc ascorbate) 15 mg 100%

    Selenium (as L-selenomethionine) 55 mcg 79%

    Copper (as copper gluconate) 500 mcg 25%

    Manganese (as manganese citrate) 2 mg 100%

    Chromium (as chromium picolinate) 200 mcg 167%

    Molybdenum (as sodium molybdate) 125 mcg 167%

    Sodium 20 mg <1%

    Potassium (from whey protein, potassium citrate, gum acacia, and potassium iodide) 55 mg 2%

    Whey Protein (milk) 7 g


    Malic Acid 1 g


    Betaine 750 mg


    Inositol 750 mg

    Last edited: Oct 10, 2014
  6. IanH

    IanH Active Member

    I wouldn't worry about the iodine for a month or so, then try adding it again and see how you go.
    You have folic acid 400mcg in the "Fatigued to fantastic". Folic acid is the acid form of folate whereas folate is the salt of the acid. Some people decry folic acid but its all a bit theoretical really. However 400mcg is not really enough for you. MTHF is what you want but I wouldn't say it is urgent for you. Next time funds permit or when you run out of the fatigue to fantastic get some MTHF and take 1mg daily along with a simple multi. A multi may be cheaper too.
  7. Hi Ian, I havent had the iodine for days- made a massive improvement on me being able to get out of bed :)
    How much should i be taking of the new pills? at the moment im taking one a day.
    NAC 600 mg free form
    zinc nitrate 30 mg
    vitamin k2 from natto extract 100 ug.

    Also, do i need to be taking Vitamin K2 complex or is what im taking ok?

    I have also stopped using the magnesium spray, it stings and takes forever to absorb, should i keep on regardless of the side effects? or buy the other one you mentioned?

    thanks :)
  8. IanH

    IanH Active Member

    NAC - OK
    zinc - OK (but when this one is finished consider a zinc/copper combination, say 1mg copper to 20 or 30 mg zinc.
    Copper should always be considered alongside zinc.
    Vitamin K2 from Natto is a mixed form so should be good.

    All the best.
  9. HI Ian, fab! what about the magnesium?

    I have found a way of combatting the horrid taste of L- cartanine .... mix it with the D-Ribose, its not the best but it kinda tastes like lemonade :)
  10. IanH

    IanH Active Member

    I am sorry but I know nothing about magnesium spray except that it is not as effective as oral dosing. I take, and recommend magnesium threonate because it has been shown to cross the BBB (blood brain barrier) more effectively than any other form but it is expensive.

    I do strongly recommend magnesium supplementation for ME/CFS and FM. It probably has more effect on symptoms than any other supplement or drug. Magnesium threonate can be taken in a lower dose than other forms too. I recommend about 150mg morning and night. Other forms such as citrate, glycinate, taurinate, "chelate) would require 500mg to 800mg daily.
  11. IanH

    IanH Active Member

    Certainly is. The dose from each tablet is one third of 144mg Magnesium. So you need to take three tablets per day.
    The 2 grams per three tablets is because the threonate is very heavy compared to magnesium which is very light in weight, hence the 144mg magnesium per 2 grams. expensive are they not? These would good quality but can you not find a cheaper version? I suppose you are in UK and prices outside US can be much higher as they are here in NZ.
  12. that was the cheapest i could find :( but thats reasonable compared to some of the tablets ive bought :) ok ill get some of these asap :)

    I thought i would mention something which i have never noticed before, you might have some insight.
    As it is Halloween month, i went to a haunted house experience with some friends, it was amazing but every time i finished one of the encounters i was exhausted... felt the need for sugar and then finished them off, 3 dys later and i am bed ridden, migraines, pains the a full on relapse. The day after it felt like i had been up all night partying and drinking vodka, the best way i can describe it was like a hangover....any thought my friend? :)

    Would this MTHF be ok?
    Last edited: Oct 24, 2014
  13. IanH

    IanH Active Member

    Even imaginary or staged stress can be a problem for people with ME. These events (like TV programs) can raise cortisol levels and "excite" the N-MDA receptors just as some nuerotoxins do.

    Basically I would say you have had a "post stress malaise" Just like post exertion malaise is induced by over exertion there are a number of triggers for this malaise. Toxins, exertion, stresses all cause malaise.

    Yes methyl folate is the same as MTHF.
  14. Got it :) Well im sorry to report that the only thing i feel is making a difference is the B12 spray. So just over a month of taking mostly everything except the Iodine, and only starting the 3 things you suggested since the 9th.
  15. RadioFM

    RadioFM Active Member


    I think the general over all advice here is good. There are many possible contributing factors that need to be evaluated before supplementation can have the most dramatic affect.

    The first step is to look at diet and addressing supplementation second. We can not supplement are way out of a bad diet. I have found that utilizing the right diet can help reduce the infectious oxidative inflammation and protect the mitochondria from future collateral damage.

    Also, I feel we need to ask as many questions as possible to help limit the potential side effects of taking the wrong supplements. The goal is to evaluate all potential risk factors driving your illness.

    • What Diet has helped you the most?

    • What is the causative factors driving your illness in your opinion?

    • Have you been tested for Lyme disease?

    • Have you had any genetic testing done and are you sensitive to methylation support?

    • Have you had reactions to sulfur foods or sulfur based medications?

    • Have you look into lipid replacement therapy?

    The ultimate goal is to do no harm and support the body's own healing potential.

    The information in this thread is not intended to be medical advice. The information is meant to inspire and motivate you to make your own decisions surrounding your health care and dietary needs. It is intended for educational and informational purposes only. You should not rely upon any information found on this thread to determine dietary changes, a medical diagnosis or course of treatment. Readers should perform their own research and make decisions in partnership with their own health care providers. This thread is for educational purposes only to document that recovery is possible.
    Last edited: Nov 14, 2014
  16. Hi :) thankyou for joining the conversation. I have rang the hospital and they don't know the answers to any of your questions, scary right? The lady was very helpful and said that if she had an indicator to what tests would have been done to get these results then she may have a better idea and be able to track any results.

    causative factor- had glandular fever when 13 and then bedridden for 2 years. Now 32.
    I haven't been really bad for the full 20 years, when I lived in Gibraltar for a year i was able to hold down a full time job, i think it may have been the sunshine, but the high does of vitamin D3 that i have been taking has not made noticeable difference.

    I have also had times when i could dance and socialise and then re coup the next day and out again, about 10 years ago.

    Since then many days in bed, aches and pains, very foggy mind and constant fatigue.
    no exercise or regular outings or social interaction.

    What Diet has help you the most?
    I have been vegan/vegetarian then pescatarian for just over a year but am naturally slender and tall so never had to worry about diets. I have very recently started eating some meat occasionally as around the time i decided to go vegan i developed chronic tellogen effluvium (hair loss) and after taking very high Iron supplements to raise my ferritin levels, and not getting very far, i decided to start re introducing meat.

    Have you look into lipid replacement therapy? No i hadn't until you mentioned it, i have just read up on it,very interesting, do you suggest i try this with b vitamins?

    Have you had any genetic testing done in the pass and are you sensitive to methylation support?
    After speaking to my mother she knows no reason why I would have Lymes disease, had genetic testing or had methylation support. She says that it was in her opinion the glandular fever which set everything off.

    kindest regards :)
    Last edited: Nov 14, 2014
  17. RadioFM

    RadioFM Active Member

    Hi, Fairytalenightmare

    I do believe that Glandular fever may be one of many contributing factor in your illness. But, we may need to research Lyme disease more before we rule it out as a causative factor. Many chronically ill people have made this mistake and suffered needlessly.

    There is no one causative factor in driving these chronic infections. There are many contributing factors and Lyme and it's co-infections may be the silent epidemic playing our society.

    I thought Lyme disease was not a risk factor in my FM. I tested negative and that was the end of it. I was wrong. I retested using more sophisticated testing only to find out that I was in fact infected with Lyme and it's many co-infections.

    Lyme is everywhere, many have been infected and have no symptoms. If you study my threads you will see there are many possible risk factors that may raise the susceptibility of developing these chronic infections such as Pyroluria ...

    The elephant in the room has been exposed to the world. If you have been sick with a unexplainable illness you need to be evaluated for Lyme(.)

    If you want to learn more about the diet and supplements that has helped me the most. Please send me a PM. Also, I can try and help you find a well informed health care practitioner in your area.

    Never give up the fight!

    Last edited: Nov 15, 2014
  18. HI :) im back,lol. Been waiting to see my doctor for a lymes test, all she could do was give me a test to have at my local hospital, through reading about Lymes these tests wont give any results that can be used? should i go through with it anyway?

    My doctor said that if i did have lymes, then it would have been for 20 years and would probably now find i have m.e and fibro from having it, thus not curable and not changing anything :(
  19. IanH

    IanH Active Member

    It is certainly worth wile continuing with any tests for infection, particularly chronic Lyme. However bear in mind that ME and FM are not Lyme and you do not need to have any infections as precursor to the ME or FM symptoms. Lyme disease can precede ME (and possibly FM) but is not normally the case as can be seen by the worldwide incidence of ME (FM) compared to Chronic Lyme.
  20. RadioFM

    RadioFM Active Member

    Multi-Systemic Infectious Disease Syndrome, Do You Have It?

    Moderator@ Quote:

    "I had a flu-like illness in late summer 1987, with a severe sore throat, headache, fatigue and fever.
    My Dr told me I had a virus. Weeks later I developed an ache in my right hip. Weeks after that, I experienced severe painful throbbing in every joint in my body. When that finally subsided, I was left with all-over muscle pain and stiffness and sleep problems. I was diagnosed with fibromyalgia.
    As I got older, my symptoms slowly worsened. I developed severe fatigue and insomnia. In 2007 I tried antivirals without much effect. I learned I had food sensitivities and eliminating those foods did help decrease my symptoms. I exercised and that helped a little also.
    In early 2008 I tried Ambien CR for sleep and my symptoms became much worse. I developed severe, excruciating head and neck pain. It felt like a 4 inch diameter drill bit was drilling through the base of my skull and coming out my mouth 24/7. My neck was extremely stiff also.
    The fatigue, insomnia and brain fog were also relentless. I did not know how I would live this way. I was not getting any help from local Dr's, so I did my own online research and discovered that I had many symptoms of Lyme disease (Borrelia burgdorferi) infection, a bacterial infection spread by ticks.
    I realized that it all fit Lyme and other tick-borne diseases...the flu-like illness, the aching hip, the throbbing joints many years ago, the muscle pain and stiffness, the fatigue, the insomnia and other symptoms.
    The Dr who ordered the anti-virals, agreed to order the Lyme tests that I requested through Igenex lab in CA. I had already had Lyme tests through a local lab that were negative.
    When the results of the Igenex tests came, I got a copy and compared my results to the information about western blots found in the paper "Advanced Topics in Lyme Disease" by Dr Joseph Burrascano. Even though the test was read as officially CDC negative, I knew I had Lyme specific bands on my results, which was significant. I found a Lyme literate MD and had a very thorough evaluation in Feb 2009. I was diagnosed with Lyme, Bartonella and I also discovered that I had Rocky Mt Spotted Fever at some point in my life. I treated with the Lyme literate MD using long-term antibiotics, bioidentical hormones, supplements, etc for 3 years and I did improve at least 80%! I no longer have the fatigue or insomnia. My pain has improved and I no longer wonder how I will live this way. I am always researching and trying new things in the hopes of achieving even more improvement. I continue to exercise and eliminate certain foods such as gluten, sugar, high fructose corn syrup, dairy and soy. I am very thankful to my Lyme literate MD. He saved my life."

    Mikey is another forum moderator with a similar story of a chronic infections being a contributing factor related to his illness. I could post many other stories just like this from the PR forum.

    If you have been sick with a chronic unexplainable illness such as: "Fibromyalgia" you may need to be evaluated for Lyme Disease/Multi-Systemic Infectious Disease Syndrome as well as non-Lyme MSIDS.

    I thought Lyme disease and was not a risk factor in my FM as I tested negative.


    I re-tested using Igenex lab in California, a more sophisticated testing methods only to find out I was in fact infected with Lyme and it's many co-infections.

    Many chronically ill people have made this same mistake and suffered needlessly.

    If you study my threads you will see there are many possible risk factors that may raise the susceptibility of developing these chronic infections.

    Please review this threads below: