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Janno Curing his Multiple Sclerosis

Discussion in 'My Optimal Journal' started by janno joona, Mar 19, 2014.

  1. janno joona

    janno joona New Member

    This will be the journal about my path with MS. Hopefully I can close this story some day by stating that my Dark Passenger has left me for good. But until then this is my story...


    ROUTINE-FREE LIFE SINCE 2008

    I was born Oct 7, 1984 in Estonia, Europe (I am 29 at the moment). In Estonia we have clean air, water, cold weather etc, but high stress and not a lot of sunshine.

    In college my tonsils were removed, because I always had a sore throat and my heart was racing during the last months before the surgery. Doctor’s comment after the surgery was that my tonsils were like “rags.” I don’t know if that matters to the story or is it just a fun fact.

    I was officially diagnosed with MS in August 2008. I remember being under a huge amount of stress at the time. I was getting worse during traveling and when I finally got to the hospital I had pretty much every possible symptom they say MSers typically have:
    • Lost balance
    • Blurry double vision
    • Weak bladder
    • Lost skin sensitivity
    • Reduced libido
    • Weak legs
    • Fatigue
    • Brain fog
    • Overall weakness in my body
    • Depression

    This is what is written to my Patient History by the doctors about the first diagnosis after I made it to the hospital:

    Before the fall 2008 the patient claims having problems with eyes.
    There were multiple periods when I had blurry vision (right eye), especially during the spring (I assumed it was caused by stressful exam session periods and ignored it).

    February 2008 – Lhermitte’ positive.
    It means when I bend down my head I get buzzing (not electrical shock) sensation in my hands and spine.

    July 2008 numb feeling in the legs that spread to the waistline. Numb fingertips, emptying the bladder was complicated.

    MRI of the brain

    Many smaller lesions in the white matter, that is with an intensified signal on T2, PD and FLAIR images. T1 image doesn't show lesions.

    Following the injection of the contrast agent it can be seen a small contrast enhancement in the furnace to the right parietal. Infratentorial - concrete lesion ponsis on the left, which extends to the bottom of mesencephalon.

    Vague T2 signal intensification near the IV ventricle. Supratentorial - lesions of about twenty. On the right OP jukstakortikal lesions. On left are three jukstakortikal frontal lesions. Small vague lesions of the corpus callosum.

    2008 Aug 06- Aug 08 – diagnosed with MS.

    AFTER THE 1st DIAGNOSIS

    Unfortunately the doctors didn’t really get into other health factors with me, besides prescribing the immunomodulating medications. I was advised to go on Copaxone and keep living the exact same lifestyle as before. No other tests were done.

    After the first diagnosis they gave me IV steroids of predinsolone and solumedrol. The attack subsided, but really slowly. In couple of months I was more or less back on my feet. But I couldn’t tolerate sunlight or heat very well. So the treatment helped to some extent. Some symptoms still remained. Main problem was the brain fog, depression, problems with sleeping, weakness, weak eyes. I was injecting copaxone (glatiramer acetate) for 2 years, but I wasn’t thinking much what to eat or how to deal wth stress etc. Was going to partys and so on. Just as any 23-year old college student.

    For a year I lived in a new apartment with serious mold in it. I remember we had fungus growing in the corners of the rooms. The only allergy I know is when I visit my grandparents’ house. I get itchy eyes and it’s just very uncomfortable to stay there. I spent a lot of time there when I was a kid.

    But the plan was just to ignore the disease, not to stress about it, and enjoy what was left of my health as long as I still had it. Because as the doctors said it would not come to a beautiful end anyways. There was nothing to be done – soon I would be riding a wheelchair and getting worse and worse no matter what I do.

    I got new attacks

    I have had them pretty much 3-4 times a year. And the yearly amount has been growing. Every time been treated with IV solumedrol. Sometimes it helps to an extent. But I’ve had periods where the symptoms have been completely vanished as well.

    So they decided that Copaxone was not really the best drug and put me on Betainterferon. I also tried Avonex. Both of those gave me really bad side effects like depression, fatigue, flu-like symptoms, head aches etc. I didn’t feel much diference in over all well-being while injecting myself with those or just having an MS relapses. So now I haven’t been on any of those drugs for about 2 years.

    I wouldn’t really say I have felt much difference with or without the meds. I probably could slow down the progression of MS with interferon, but I don’t feel this fixes the problem long term.

    Recent developments and the situation right now

    Last summer I was in Hawaii, running, surfing, working out. Every time I go there I seem to get well in about 2-3 weeks. MS symptoms are disappearing. I am active and happy. Only problem is that I have crazy cravings for carbs in Hawaii.

    And combined with leaky gut that that makes me bloated, fat and a bit sick. After we started to come back to Europe this fall I got one of the craziest attacks in New York. The coming back included many days of sleeplessness, flying, worrying, stress, eating random foods, jet lag etc.

    I heard about LDN (low dose naltrexone)

    This fall I tried LDN. While taking that I was declining and I decided to stop with the LDN. At first I was on 2.25 mg for a month and then 4.5 mg. Legs started cramping and something inside me told that it might not be helping me. I also have severe problems with gut and I have heard the gut should be fixed first.

    So this exacerbation again required a new steroid IV treatment. After that I got better, but once it weaned off – I was getting worse again.

    5 days ago I started again another steroid treatment
    I don’t remember needing seroids again only after one month. I have been given the double dose of the standard amount (2 grams IV Solu Medrol). For 5 days. Last one was with 1 gram for 5 days and 2 grams for 5 days. So it’s very intense. Some people get better only after 3 days of 1 gram.

    I know that it’s really bad for adrenals and gut health, but without it I can’t walk. And the main thing – I can’t see. I admit, I surely am overdoing it – but it just helps me to stay alive at his point.

    All in all – I feel that once I am off the steroid now – I am starting to get worse pretty much the next week. Loosing the vision, ability to walk, getting cramps, can’t think straight etc. I feel that even very small things get me irritated and I seem to constantly worry about something. I guess the biggest worry in the back of my head is that my MS might have transitioned from relapsing-remitting into secondary progressive. And it has been planted into my head that once that happens – there is no return.
     
  2. janno joona

    janno joona New Member

    MY BIG PLAN

    Step 1: Gonna “sell my Ferrari”
    I will wrap up everything I am currently doing in Estonia and move to Hawaii for 6 months. This is the period my visa legally allows me to stay there. I will do it after a month approximately I suppose.

    This is why:
    • Low stress,
    • Lots of sunshine,
    • Ocean and seafood,
    • Grounding,
    • Happy smiling people around me
    Those things will hopefully make the initial change I need to work on the rest of my health problems. I will try to find the housing without any mold in it.

    So my main question is: should I go back on some of those drugs (interferon, avonex) just until I get my gut lining fixed.
    Because now I need those steroids once in a while and this screws the gut up bad. Maybe I could cut the steroids out then. Or should I continue with LDN at a very low dose.
    I currently feel that I will say no again to the interferons and ask the docs to prescribe me steroid pills. Just in case I get into serious trouble.

    Step 2: Diet
    I have serious leaky gut issues.
    So as far as I have read I should consume lots of healthy fats, clean water, plants, organ meats, iodine, broth. And add some supplements. Trying to eat as organic and local grown as possible. The second question is how to stay away from carbs in Hawaii. This craving there is crazy. Power of will is not gonna suffice in the long run, I am sure. Iodine should help?

    Broth
    seems to bring the bloating down. But I was wondering if I could be histamine intolerant? Should I get a lab for histamine at this point? I have also been reading that glutamine in broth might worsen MS symptoms. So should I use stock (boil it only 1-2 hours instead of 24-48?) Should I prefer broth made of fish?
    Many foods cause some serious bloating and weight gain for me. Sometimes it seems quite random. Like peppermint tea, even salad, some nuts or seeds, (wasn’t supposed to eat them anyway, right?), bacon etc.

    So yeah, I need a food diary.

    Step 3: Stress
    This is the toughest puzzle for me to solve at the moment. Seems that the only way to solve it – to fly to Hawaii or some other country. I am an enterpreneur, running different businesses and projects, but I am completely burnt out.
    The only problem is that it’s kind of hard to eat healthy in Hawaii. Just need to find a Whole Foods there. Or knowing myself – I will probably end up starting one health shop there anyways.

    Step 4: Sleep
    I know what I should do in terms of light and EMFs. But I have one thing that wakes me – I need to pee at least once every night. I will do some exercises to strenghten the muscles. But I was wondering if I should add a medication for that as well.

    Step 5: Training
    Another question is how should I train? Should I do quick explosive exercises like sprinting or more like swimming, jogging and walking or meditating type of stuff?
    How about CT? Since my immune system is screwed up – maybe I should’t do it at this point? Could baths are good for burning fat and for about 2 hours after I feel much better. But then it’s getting bad again. It’s just – when I have been eating high fat and doing the CT it seems that I am starting to decline as soon as the steroid wears off. I might be wrong about staying off of the CT and probably I am.
     
  3. janno joona

    janno joona New Member

    My Current Labs

    Haemogram
    Hemoblobine 135 g/l
    Hematocrit 40.8 %
    Leukocytes 7.7 9/L
    Erythrocytes 4.64 12/L
    MCV 87.9 fL
    MCH 29.1 pg
    RDW 13.5 %
    Palatelets 190 9/L
    Trombokriit 0.25 %
    MPV 13.0 %
    PDW 17.9 %

    Neutrophil % 70.2
    Eosinophils % 0.4
    Besophils % 0.3
    Monocytes % 8.3
    Lymphocytes % 20.89/L
    Neutrophils abs 5.4 9/L -
    Eosinophils abs 0.0 9/L
    Asofiilide abs 0.0 9/L
    Monocyte al 0.6 9/L
    Lymphocyte al 1.6 9/L

    ALAT 15 U/l
    ASAT 18 U/l
    Bilirubin (total) 11 mkmol/l
    CRP 1.39 mg/l
    eGFR (MDRD) 90.96 ml/min/1,73
    Gamma-glutamine 12 U/l
    HDL cholesterol 2.3 mmol/l
    Cholesterol 7.2 mmol/l
    Creatinine 86 mkmol/l
    Creatinine kinase 18 U/l
    Uric acid 349 mkmol/l
    LDL cholesterol 3.9 mmol/l
    Magnesium 0.89 mmol/l
    Iron 5.7 mmol/l
    Triglycerides 0.61 mmol/l
    Urea 5.8 mmol/l
    HbA1c
    HbA1c 5.6
    %
    HbA1c (IFCC) 37.7 mmol/mol
    DHEAS 6.57 mkmol/l
    Insulin 3.6 MlU/l
    Cortisol 544 nmol/l
    Testosterone 9.8 nmol/l
    TPO Ak 35 kU/l
    Vitamin B12 342 pmol/l
    Vitamin D (25-OH) 122.0 nmol/l = 48.88 ng/ml:
     
  4. fitness@home

    fitness@home Silver

    Janno, welcome. Wonderful start with your journal. Would it be possible to add the ranges to your labs listed above?

    Good luck on your journey of recovery. If you always feel better while in Hawaii it make sense to start your healing there.
     
  5. kovita

    kovita Silver

    welcome, Janno! Good to have another european here. I wish you, you succeed in your pursuit of health! i wish that for myself too ;-)
     
  6. kovita

    kovita Silver

    did you read something about protomyxozoa rheumatica? i think it is highly fragile subject, but you mentioned you get much worse on high fat and CT, this is something this parasite likes according to S.Fry who discovered it. I myself sometimes wonder whether I am not just feeding the internal enemy.
     
  7. caroline

    caroline Moderator

    Welcome janno! and good morning from OZ! Have you been to florida? The pan handle? The Gulf?

    living accommodations would be way cheaper and wonderful fresh seafood etc......
     
  8. Jack Kruse

    Jack Kruse Administrator

    histamine release is related to low redox on CMI......so as you improve it it will go away. You do not need to treat it. It likely is a consequence of the AI
     
    janno joona likes this.
  9. SeaHorse

    SeaHorse Gold

    What about letting the environment in Hawaii do it's magic for awhile, don't stress your body further by exercise, drink lots of great water, stay away from emf, think of your food as brain fuel (only fresh fish, fat, meat and veg)and spend lots of time in the ocean for CT. See how you are in a month...welcome to the forum and all the best!
     
    janno joona and Jude like this.
  10. nonchalant

    nonchalant Silver

    Welcome, Janno, glad to have you with us. The peeing at night is a consequence of dehydration. Oddly enough, I found that having a bottle of RO (reverse osmosis) water beside my bed, and drinking about a mouthful whenever I awakened, diminished the need to get up at night (after a few nights.)

    I believe Dr. Kruse said that with MS, you need lots and lots of energy. If you could get every possible second of sunlight on your skin, it should help, even though you are up north now. Great that you have access to good water, but RO water is even better for reversing disease.
     
  11. Jack Kruse

    Jack Kruse Administrator

    Energy and Epigenetics 1...........for MS is big.
     
  12. kyrakitty

    kyrakitty New Member

    Welcome Juno finally had time to read your journal after reading your post on FB wow they had you change zero in your lifestyle accept take some prescription and basically told you there's no hope! Nice NOT. I am the massage therapist with a client who has progressive MS so I/we will be watching your journal and I hope it encourages my client too...

    You are a fast learner with good a good plan. I haven't read all the blogs yet, I am still working on that, but from all I've read any and all CT is good and it will improve your redox due to the collagen/water/semiconductor connection which is affected by the skin being in contact with the cold water.

    The more you CT the more your body will be able to heal itself even faster. Maybe you could temporarily play with the ratios of fat and/or protein to see if that helps when the steroid starts to wear off with your symptoms getting worse with CT.

    But Continual CT is supposed to improve your redox so perhaps you don't need to temporarily play with the fat or protein ratios but instead be consistent with CT, no deep CT for now, but regular CT between 50-55.

    Have you inquired into if there is a possibility to stay in the Gulf by Jack to work with him directly for 6 months if he is taking clients in his office/practice? With how serious things are for you 6 month is a blip of time in the big picture and you are so young it seems like that would be time very well spent. If it is financially possible for you and if Jack's practice is taking clients that seems like the most direct and sure fire way to tackle this head on.
     
  13. Inger

    Inger Silver

    Welcome Joona - we are neighbors :) I am close to Helsinki. My one sister lives in Estonia BTW. I think we have pretty much sunshine? ;) I have been tanning nude for many days already this spring - have you? I bet it would help :) no need to wait for Florida
    I suggest you start keto diet ASAP, that way it will be easier when you are in Florida. Then you have weaned off sugar by then :)
    Try to eat lots of seafood, I am sure you can get it where you live? Estonia has lots of fish... we even have fresh fish from Estonia in our shops here
    Are you doing any earthing? Now is the time for starting to walk barefoot :) and yeah.. I cannot stress it enough.. take something to lay on the ground (wool or cotton) and lay down in the sun with as little clothing as possible... you will not be cold if you find a spot that is now windy. It will help you heal so much!

    I am 100% sure you will heal Joona!

    :love:
     
    Last edited: Mar 20, 2014
  14. sooperb

    sooperb New Member

    Janno have you read or looked up Dr. Terry Wahl? She was an MS sufferer who effected a miraculous recovery, might be worth a look.
     
  15. kyrakitty

    kyrakitty New Member

    Would love to hear about things that have been working for you Janno? I want to share them with my MS client for encouragement not to copy you but to see the possibilities as he has his own n=1. I am sure you have received plenty of advice and hope to hear about what is helping you.
     
  16. janno joona

    janno joona New Member

    Thank you guys for your responses! It feels really good to have such supportive group! That really helps when trying to solve that crazy puzzle.

    Dr Jackson’s comments about my labs
    I consulted with dr Tim Jackson over the phone. He recommended 2 tests. As the first step I took the Genova Diagnostics stool test and sent them back to the States. Haven’t got the results back yet. The other one is 23andme.com genetic test. But shipping this one to Estonia is really expensive. So I decided to order that once I am in the States.

    He saw that testosterone is extremely low, also vitamin D. I have been supplementing with drops, but it’s still on the lower side of the suggested range for people with autoimmune diseases. Low DHEA. All in all – I clearly have an inflammation in my body. Low DHEA + Low testosterone = autoimmune disease.

    I got what dr Jackson recommended.
    Repairvite supplement for healing the gut,
    Micellized vitamin D3 that should absorb better,
    DHEA cream,
    Pregnenolone, which is a precursor to testosterone.

    Got them from Neurobiologix website.

    I have been taking them for about a week. Also taking magnesium. I haven’t felt any improvement in symptoms or sleeping. My own idea was to add Tongkat Ali supplement as well for testosterone.

    My diet
    I have been following the diet you guys and dr Kruse recommended here even before I found out about dr Kruse and this website. I guess the main change that I have made now is that I’ve added more fish and seafood. I have consumed lot of fat and a lot of animal protein for couple of years.

    I have had some white matter in my mouth for about 4 years. It is not on my tongue so much, but more behind my teeth in the back of my mouth. It seems to always be there every morning, no matter what I eat. When I am not eating anything - it’s gone. And it seemed to get worse when I was eating sugar, alcohol, fruits, rice or meat. When I am doing the Solu Medrol IV after the MS relapse it also disappears for a while. I remember it getting really bad when I was drinking alcohol. I haven’t been doing that for 2 years now. I also cut out sugar completely and I haven’t been eating any fruits this winter. The white matter lessens, but I feel terrible. I can’t see well, I have cramps in my legs, balance problems, fatigue, bad sleep, terrible mood and I have had 3 relapses of MS this winter. And it seems to get worse. The foods that didn’t make it show up before now seem to do that.

    2 days ago I felt really bad and ate couple of oranges. And I started to feel better right away. My vision and overall mood got a lot better. My walking seemed better. I added some apples and I started to pass some gas that smelled terrible. But now when I am eating apples it doesn’t smell so bad anymore.

    Today I was eating some strawberries and drinking pure cold pressed orange juice. Both yesterday and today I slept much better. I have a raise in my libido, mood is better, vision is way better. I remember in Hawaii, besides the sunshine, I have also been eating more fruits and carbs. I even remember I when used to feel another MS relapse coming I used to drink some cider that has huge amount of sugar and I always felt better right away.

    On the other hand, after eating the apples etc there is much more of that white matter in my mouth. And it seems I have added some fat on my stomach and legs.

    3 more things I wanted to mention
    I always feel better for about 2-3 hours after 20-30 minutes in cold bath.
    I feel better during the evening and worse in the middle of the day
    When I am trying to go ketogenic (drinking extra fat coconut milk and eating more fat, less fruit etc) I am feeling really sick, tired and dizzy.

    The connections between my exacerbations and my lifestyle I can intuitively bring are:
    high stress – relapses have almost always followed a high stress period in my life
    alcohol consumption – if drinking too much I have been getting worse
    high fat diet or fasting (when I have been trying to lose weight).

    The bad thing is that this is not based on a written log, but on my own blurry memory, of course.

    I have found lots of youtube videos by people with leaky gut or autoimmune problems who claim they felt better instantly when eating fruits and some even recommend a high fruit diet. So as you can guess - I am really confused now. I guess I have a lot of reading and self experimenting ahead.

    If you guys could give me your thoughts I would really appreciate that. Sadly, neurologists can only recommend another immunosupressant and that’s it. I would consider them to get back to the happy Matrix so to speak, but the side effects of those meds are unbearable and sadly the statistics say that this would only postpone the unhappy end for me.
     
    Last edited: Apr 7, 2014
  17. janno joona

    janno joona New Member

    Yes, I know about her. I just finished her book. Good reading in the cold bath :). Thanks for the recommendation.
     
  18. janno joona

    janno joona New Member

    Terve! :)

    Great advice, thanks! Yeah, we've had like 4-5 sunny days :). But to get the vitamin D I think you should be closer to the equator? I have actually been on keto for a while. Loosing weight, but feeling terrible. Weak, dizzy, depressed, insomnia, MS relapses etc. So I guess, for me, there is another piece in the puzzle I need to find and put into the right place.

    Earthing is one thing I could definitely improve!

    Kiitos, Inger!
     
  19. janno joona

    janno joona New Member

    This is in Estonian. But I guess you can understand :). Any comments greatly appreciated!
     

    Attached Files:

  20. janno joona

    janno joona New Member

    Other things I have done so far.

    I’ve been disconnecting my wifi router at night. Ordered the blue light blocker glasses. Doing a lot of CT as well.
    I gave up my downtown apartment in Tallinn. I have one more week left here and then Im going to move out. Going stay at the countryside with my parents for a while. Lots of lakes and forest there and a lot less EMFs.

    I have been trying to finish my projects here. Can’t really leave before those things are done. Hopefully I can complete them in 1,5 months. But I haven’t bought the plane tickets yet.
    I prefer Hawaii, because I have a great opportunity to stay there at my friend’s house and also because of some work related stuff. I definitely couldn’t afford to rent an apartment or a house on Oahu. Labs, meds, supplements etc take a lot of money. And once you feel sick it’s really hard to think straight. You just wanna feel better at any cost. This is why pharma is such a big business.

    I have been reading a lot and listening to a lot of podcasts. MS has really opened my eyes to a whole different world. Sometimes, my wish to know the truth is seriously conflicting with my wish to stay sane. But I guess learning is always somewhat of a painful experience.
     
    Theka likes this.

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