10/2 NEW info /14 years in remission/ free protocol available

Discussion in 'Fibromyalgia Main Forum' started by kallsup, Sep 11, 2008.

  1. kallsup

    kallsup New Member

    I figured I would offer daily step by step lessons about how to understand FM and how to cure it.
    Here is the short version, what to do and when to do it. Longer explanations follow.

    Fibromyalgia Recovery Protocol

    Refrigerator Version

    1. Print this and show it to your doctor. If she/he approves, put it on your refrigerator.
    2. Find a low or medium carbohydrate diet you can be comfortable with. Atikns iis a Low Carb Diet. The Zone is a low to medium carb diet. A diet for people with diabetes can work as it is medium carb. You will have to ignore any suggestions about eating after dinner.
    3. Be sure you consume no fluoride and are not exposed to electromagnetic radiation, especially when sleeping.
    Breakfast: a Low to medium carb breakfast
    Take these supplements
    100 Mg B! (thiamine)
    50 Mg B complex
    divided dose multi vitamin from Solgar or Natrol
    taurine 500 MG
    L carnitine 1000 mg

    Lunch a low to medium carb lunch
    Take these supplements
    100 Mg B! (thiamine)
    50 Mg B complex
    divided dose multi vitamin from Solgar or Natrol
    taurine 500 MG

    Dinner a low to medium carb dinner eaten by 6:30 PM
    Take these supplements
    100 Mg B! (thiamine)
    50 Mg B complex
    divided dose multi vitamin from Solgar or Natrol
    taurine 500 MG
    L carnitine 1000 mg

    You may have water and unsweetened herb tea. Do not drink decaffeinated beverages now or at any time of day as these do have some caffeine.
    Take a hot bath (as hot as you can comfortably tolerate) sometime between dinner and bedtime.

    Just before bed take
    500 to 100o mg of magnesium and an equal amount of calcium
    3 to 5 mg of Melatonin OR 2000 to 3000 mg L Arginine.
    ####### end of short version

    Fibromyalgia Recovery Protocol Long Version with Explanations

    The first thing to understand is that FM is related to a failure in every cell in your body to transform food into energy. Dr. Eisinger identified it as a problem with glycolosis, the process of turning blood sugar into energy.

    Every cell turns blood sugar into energy in order to carry out its function. This means that all functions from thyroid to kidney to muscle strength run only partially because low levels of energy are produced. This also explains why FM has so many smoking guns, why it seems like it is about the dysfunction of some organ, then it seems to be a problem with something else. It is a partial breakdown of every function!

    September 13, 2008

    The first step toward remission involves protecting deep sleep. Growth hormone is secreted during deep sleep and this helps to repair muscles. Deep, stage four sleep is facilitated by a fasting state. People with FM have slow cellular digestion. Specifically, in each cell, blood sugar is transformed to pyruvic acid as part of the Krebs Cycle (also called citric acid cycle) but the next steps of this cycle that transforms pyruvic acid into energy does not function well. Imagine that every cell in the body is a wood stove and that for some reason the wood stove burns slowly and incompletely leaving charred remains of logs. (It feels like that sometimes too, like your cells are full of charred remains of something.)

    So, we have to allow more time than most people for cellular digestion to take place before the main deep sleep cycle.

    Normal people go in and out of deep sleep all night. The most significant period of deep sleep usually comes around 12 or 1 AM. People with FM often have too much pyruvic acid in their systems at that time so their deepest sleep comes much later if at all. (When I had active FM, I often felt like I was just getting to a period of deep, satisfying sleep when I had to wake up for the day.)

    Here is what we have to do to protect deep sleep:

    1) Establish a regular bedtime and do not ingest any calories three to four hours before you go to bed. You can drink water and other beverages without calories. If this is too many hours to go without food, set out a snack to have after 3 AM.
    2) Do not consume caffeine. Many people will need to eliminate even decaffeinated beverages as these have low levels of caffeine. After you are in remission you might try decaffeinated drinks. (I can now drink decaf coffee early in the day.) Remember that chocolate has caffeine.
    3) In the first months of this approach eat a low/ balanced carb diet. Food eaten after about 4 PM should is more critical than food eaten earlier in the day. Do not drink alcohol or have sweets in after 4 PM. Eventually, you will be able to bring more carbs back into your diet.
    4) Take a hot bath before bed. This helps with the release of melatonin. You want to actually raise your body temp. A hot shower will not work. I can get away without doing this now, but in the early stages of moving toward remission this was important.

    Don’t expect to wake up pain free at first. Initially, after I began to improve, I had morning pain that would subside within the first hour after waking.

    This approach does take commitment. But it is worth it and some of the rules can be bent a bit after you feel better. The one rule that cannot be bent is the No Eating After Dinner rule. It was hard at first, but today I don’t even notice food after dinner. I drink a lot of unsweetened herb tea as part of my evening ritual. Find some herb teas you really like.

    Tomorrow: Supplements—what and why. There are only 4 key ones, but there are others that are helpful at first.

    If you do this, please let me know how it is going for you.

    [This Message was Edited on 09/13/2008]
    September 14, 2008

    Discuss the use of any supplements with your doctor. The advice below is not meant to replace medical advice but to be ideas to suggest to your doctor for evaluation. Some of the doses here are higher than recommended on the bottle, so be sure to have medical approval.

    Supplements are an important part of this protocol. I am going to talk about this in two parts. I will write about the four key supplements tonight and tomorrow I will write about additional supplements that may be helpful especially at the start of recovery.

    Supplements to support glycolosis (the process of tuning blood sugar into energy)

    --Vitamin B1 (thiamin). This is the most important supplement. Thiamin is needed to take pyruvic acid to the next step in the Kreb’s cycle. Eisinger found people with fibromyalgia have high levels of pyruvic acid. Take 300 mg per day. Start by dividing this up, 100 mg with each meal. Sunflower seeds and pork also have relatively high amounts of thiamin, but you cannot get enough by just eating these foods. (I did eat a lot of sunflower seeds in my recovery phase and I had a feeling this helped, but this was only a hunch and I did not keep doing this as they are high calorie.) Thiamine is one of the cheapest supplements. I use whatever I find with a good price at the drug store of grocery store.

    I have also experimented with a form called allithiamine which is a fat soluble rather than water soluble form of the vitamin. The brand name I use is Cardiovascular Research and I get it from www.vitaminshoppe.com. I replace one or two of the regular 100 mg thiamin tablets with one of these 50 mg capsules. My sense is my energy is even better with allitiamine. A word of caution: the capsules go down fine, but if they begin to dissolve your throat, you will taste this stuff and it tastes horrible. Take with plenty of water and have something with a good flavor ready to wash down the bad taste if it comes back on you.

    --A good multivitamin with high levels of B Complex OR a standard multi plus a BComplex supplement. For B Complex I like Solgar. The Multi I used for years is My Favorite Multiple by Natrol. You can get this in a divided dose (4 pills per day) version that you can take with your meals to spread evenly over the day. I changed to another multiple when I was going through menopause because I was concerned that the ginseng in the Natrol product be exacerbating my hot flashes. I now take Solgar Formula Vm-Prime Adults 50+ Iron Free. I no longer divide my dose over the day, but if you are still doing this ( and I advise you do during your recovery phase) the two pills per daily serving could be taken at breakfast and lunch.

    Supplements to support sleep

    Melatonin or LArignine

    Initially, I took 3000 mg of L arginine to promote growth hormone release. (If you are prone to cold sores or any other herpes condition, this is not your best choice.) This can also be taken with L ornithine

    One brand I have used is: Vitamin Shoppe L-Arginine-Ornithine (Super Strength)

    This seemed to work well, but at some point when traveling I tried melatonin to promote sleep and wondered it this could replace the arginine. I stopped taking arginine and I take melatonin instead. I take 3 to 5 mg of melatonin at bedtime. Do not take this at any other time of day. I look for a product that does not contain vitamin B6. I get enough Bs through the day and B6 at bedtime is said to cause vivid dreams and nightmares. This is the supplement that is most important to discuss with your doctor, especially if you take other sleep meds.

    Supplement that supports glycolosis and sleep

    Magnesium: I take 500 mg at bedtime. This should be balanced by calcium.

    Tomorrow I will write about taurine, carnitine, malic acid and some other supplements that I took during my recovery phase that I no longer need to take.

    [This Message was Edited on 09/14/2008]
    Later this week I will write about optional supplements for the initial recovery phase. But first I wanted to talk about exposures that can sabotage your recovery even if you are doing everything else right.

    Caffeine: I wrote about this in a previous post, but it is worth mentioning again. Do not use any caffeine, even decaffeinated beverages (which do have some caffeine) until you have been pain free for a year. At that point you might try decaffeinated beverages early in the day. Watch your reactions carefully. Even after recovery do not ever drink caffeinated beverages including Coke and some types of root beer.

    Fluoride: Others have written posts about this toxic chemical. Fluoride will damage your mitochondria and thus wreck havoc with your ability to covert blood sugar into energy. There are some who think that fluoride exposure is the cause of many cases of FM. The Gulf War Syndrome has many of the same symptoms of fibromyalgia and it is thought that the widespread use of fluoride based drugs was the cause of this syndrome.
    This link takes you to a well thought out article about fluoride and fibromyalgia. Stay away from drugs that have Fluoride. These include cipro and levaquin. Get rid of fluoride toothpaste and Teflon pans. (Notice the fl in Teflon. Things that contain fluoride often have that fl in the name, although this is not the case with cipro or levaquin.)

    Electromagnetic radiation (EMR): Electromagnetic radiation can reduce your body’s ability to utilize melatonin. It also can damage mitochondria. You can rent a meter to test your home. Even without a meter you can reduce your exposure. Digital clocks are a surprisingly powerful source. Get these away from your bed. Make sure you sleep far from the electric meter. An electric meter on the other side of the wall can be inches from your head. Some hybrid cars have high levels of EMR. Use speaker phone on your cell phone whenever possible. If you live near power lines or in a home with old wiring or wiring that uses the plumbing as a ground source, you may be exposed to continual electromagnetic radiation. You might want to rent a meter to determine what your exposure is.

    I will be at school quite late the next two nights, but I will be back on Friday to write more about supplements for recovery. Meanwhile, I would love to hear how you are doing if you are trying any of this!

    [This Message was Edited on 09/16/2008]

    New info September 19

    Somone found an old post of mine on another website. In that post I spoke about Taurine and Carnitine.
    These are two supplements I have dropped because I don't seem to need them anymore and to save money. After rereading this old post, however,I decided to give Taurine a new trial to see if it might increase my strength. (I don't feel weak, or in pain, but stronger is better.) I'll let you know how that goes in a few weeks.

    Early in my recovery these supplements were like wonder drugs. At that time I would take 500 mg of taurine three times per day and 1000 mg carnitine am and pm. I also took malic acid or malic acid with magnesium at times and found this to be helpful during recovery. Like thiamine, malic acid is a key part of the Krebs cycle. It is also in apples.

    So far it seems four people report trying the protocol or some aspect of it and reports have been positive. I would be so pleased to hear that people who have had to cut back on their activities are able to do more that they find enjoyable and meaningful.

    After Recovery
    Once you have felt well for many months, you can begin to add back some carbs. Start adding some carbs early in the day and see how you do. Add a little at a time and aim for low glycemic carbs. I can now have a fairly high carb breakfast and get away with this. One thing I can't have is chocolate except for small amounts infrequently. My current diet has a fairly high carb breakfast (homemade granola with coconut oil), very low carb lunch (usually chicken roll up in a low carb roll up) and a balanced carb dinner.

    October 2: Record Keeping

    One thing I did for many months as I began my journey back to health was to keep daily records of how I was feeling. The way I figured it, people with FM have bad days and good days and if I didn't track my pain levels and my energy levels I might slowly begin to improve and not know if there was an actual trend toward health or whether I was imagining things.

    I had lots of fun with this. I used colored pencils and one color meant low pain, another color high pain etc. I wish I knew where all those records are hiding in my boxes of books.

    Anyway, whether you use colored pencils or just a quick note for each day, I recommend keeping records of how you feel and supplements and practices you are trying. Good luck?

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  2. cct

    cct Member

    If it is legitimate, I am interested.
  3. vannafeelbettr

    vannafeelbettr New Member

    My screen name should say it all.
  4. kallsup

    kallsup New Member

    Looks like I have two people who might be interested.

    I figured I would offer daily step by step lessons about how to understand FM and how to cure it.

    The first thing to understand is that FM is related to a failure in every cell in your body to tranform food into energy. Dr. Eisinger identified it as a problem with glycolosis, the process of turning blood sugar into energy.

    Every cell turns blood sugar into energy in order to carry out its function. This means that all functions from thyroid to kidney to muscle strength run only partially because low levels of energy are produced. This also explains why FM has so many smoking guns, why it seems like it is about the disfunction of some organ, then it seems to be a problem with something else. It is a partial breakdown of every function!
  5. Rosiebud

    Rosiebud New Member

    willing to read your advice - I already know that I feel better if I dont eat after my dinner at 6 but its hard.

    Looking forward to reading your daily posts.

  6. cct

    cct Member

    The energy engines of the cells are called mitochondria. If the mitochondria are not making energy, then we are very fatigued.

    Is this the basis of the protocol? Is the objective to get the mitochondria working better?
  7. Juloo

    Juloo Member

    Was Eisinger the one that divided FM into different subsets? If so, which subset did you fit, and do you have any information if the protocol would be the same for the whole range of subsets?
  8. simonedb

    simonedb Member

  9. gapsych

    gapsych New Member

    Could you tell us how you were diagnosed? What are you in remission from, FM? CFS?.

    Not to be disrespectful, but are you selling something?

    I just see red flags when someone says they have been in remission that long and they have the "answer".

    I may be wrong but maybe a bit more information might help.

  10. kallsup

    kallsup New Member

    I appreciate your questions.

    I am not seeling anything. If this works for others I might sell a book about it someday.

  11. kallsup

    kallsup New Member

    I am in remission from FM. I had an official dooagnosis from a specialist who told me I would never be cured.
  12. kallsup

    kallsup New Member

    Please let me know if you try this method and if any of this works for you.
  13. hensue

    hensue New Member

    Is just listed and I am to stupid to see it?
    what is the deal here?
  14. vannafeelbettr

    vannafeelbettr New Member

    I think kallsup just wrote the first part of her protocol attached to the start of this thread. Then TOMORROW she will type of PART 2 which is the 4 supplements. It's like she's dividing it in steps/chapters.

  15. vannafeelbettr

    vannafeelbettr New Member

    You are the Queen of Research!!
    [This Message was Edited on 09/14/2008]
  16. vannafeelbettr

    vannafeelbettr New Member

    When you list your supplements, would you also list the brand names you prefer. Also, you must be super-skinny from this protocol. Talk about having double the motivation!! It'll be like killing two birds with one protocol.
  17. kallsup

    kallsup New Member

    My approach to sharing my protocol is to keep adding information by editing the original post. This is so newcomers to this can read it all at once and not have to find their way trough a thread.

    I wanted to add a few personal notes here in response to questions about my progress with FM. When I was quite sick with it, I considered leaving teaching. I had to find ways to nap at school and came home and passed out most days. I recovered before I had to decide to leave my profession and at age 57 I am still a fulltime teacher, working very busy days, and long evenings of prep. I am at school at meetings until 5:30 two days a week and teach gardening in addition to my own class.

    I am not perfect and I have been known to take too many liberties with the protocol, usually around the holiday season or on vacation when I sometimes take chances with away with eating some sweets late in the day, but find that after a couple of days I wake up achy. A painful wake up is really a wake up call and I am back on the wagon and better by the next day.

    I can also find time changes challenging. This is because the circadian rhythm for deep sleep does not change with the clock. I do best when I make the dietary time change gradually over two weeks.

    Please post any questions about the protocol.

  18. kallsup

    kallsup New Member

    Hi Folks,
    I have to skip a night of posting information about the protocol because I have too much school work to do.

    Has anyone tried any of this? Is there any interest in my continuing to write about this protocol?

  19. vannafeelbettr

    vannafeelbettr New Member

    The hardest part for me is not having my stage 4 sleep interrupted, due to a 19 month old and 3 1/2 year old who are not good sleepers themselves. I've been waking up several times a night for years because of them!!! It's a no wonder I have this disease if lack of stage 4 sleep is a big culprit.

    But, what I'm doing, starting tonight is not letting them eat close to bedtime so maybe they will sleep better!
    I took my B vitamins today, had some taurine in protein powder, and got out of the bath an hour ago. Didn't eat since 5:30 and am okay with that. I like that my stomach does not feel bloated in the morning. I plan on going to GNC to pick up other supplements in your future posts.

    Thanks for all your hard work. It would be a dream come true for me to be able to work fulltime again!!!

  20. simonedb

    simonedb Member

    I tried modifying diet and time I eat last couple days and took b-1 once today and I actually have had a pretty good day, endurance better than usual and I can feel that feeling like my metabolism is burning vs. the opposite that was happening lately where was going into a holding-onto-weight phase.
    I have tried b12 and b6 and multi b and had bad side effects with them all but b-1 is a cake walk and I like it so far.