Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Do it the Indian way

Discussion in 'Alternative Therapies' started by 62milestogojoe, Aug 20, 2017.

  1. 62milestogojoe

    62milestogojoe What's a forum then?

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    Ayurvedic medicine remains the choice of a majority of India's 1.25 billion people. Why, when western pharmacies are available? Ayurvedic medicine and technique has been honed over 3000 years in a massive, continuous kind of empirical experiment.
    [​IMG]

    Following 3 weeks of treatment in India in January I experienced 3 months of almost complete remission from ME. Moderate to mildly symptomatic prior to treatment, post treatment I was able to resume swimming, cycling and gym workouts and go to work 3 days a week.

    I say almost complete remission because I still didn't feel able to risk mountaineering, but I had been sometimes bed-bound with ME over 5 years. I will returning to India for a further 3 week session in November and hope second time around with a modified (more intensive) regime which I hope will enable me to get back in the mountains.

    If you are too ill or not in a financial position to get to India then you will be able to find a qualified Ayurvedic practitioner in most cities and towns in the West. Ask around to find a good one!

    Here is how my Indian doctor approached treatment-
    Panchakarma- or simply detox and replenishment of microbiota. I did 5 days of this but some braver souls do 10 days. Diet is restricted to 2 organic rice/veg gruel dishes a day.

    In the morning, the patient takes their medicine-panchagavya- a liquid microbiota concoction ( a Western alternative can be found here- http://forums.phoenixrising.me/inde...n-order-to-alleviate-severe-ibs-symtoms.2200/

    The patient is also massaged for an hour with oil
    [​IMG]

    Following either a deep tissue massage on a low table or a slightly gentler massage on a higher table, the patient sits in a steam box for 20 minutes and you can really feel the fluid running out of your skin
    [​IMG]

    Five days of this treatment left me feeling more energetic and fresher but this is only preparation for the focused treatment.

    Massage continues and the head is massaged for 1 hour prior to the session of shirodhara-this is a very powerful technique targeting the the central nervous system-the brain. The patient lies flat on his/her back, eyes covered whilst the technician pours heated medicinal oil in a slow rhythm across the forehead-back and forth.

    Prior to treatment I was rather non-plussed by the idea, post treatment I found myself profoundly removed from my normal 'head-state'. From then on I would anticipate the day's shirodhara with a slight sense of trepidation.
    [​IMG]
    The photo above is a posed shot, normally the patients eyes are covered and oil runs down the pipe of the oil vessel.

    In shirodhara, therapeutic pulses are sent through the brain. I think it was primarily this technique that gave me my first deep, refreshing sleep (N3) in 5 years. The experience of proper sleep was truly wonderful.

    Combined with shirodhara was a technique that seemed pretty exotic to me called nasyam, in which the patient snorts freshly extracted juice from medicinal herbs mixed with fresh human breast milk-(probably not available in the West along with panchagavya but there are probably alternatives).

    During the entire 3 weeks I also took a variety of liquid/tablet medicines (all in picture albums on the site called Ayurvedic 1,2 and 3)
    [​IMG]

    At the end of the 3 week process I felt completely different-a quantum change in health and well-being (which is why I'm going back for more).

    Reflecting on these techniques I think the detox speaks for itself. The panchagavya is really interesting in the light of research into gut microbiome in the West. I have no explanation for the nasyam. The shirodhara I think may be compared to recent therapeutic work using pulsed magnetic therapy.

    I have experimented with a wide variety of supplements/drugs/medicines in an attempt to put ME behind me. This Ayurvedic treatment has brought me closest to a solution.

    As a final note, I am not an exhibitionist or proud of my body-but I think a photo conveys a lot more than words.

    Quick note to moderator, sorry for size of photos, I do not know how to minimize them. Please minimize. Sorry
     
  2. jpcv

    jpcv Senior Member

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    way to go !
     
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  3. raghav

    raghav Senior Member

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    I underwent Ayurveda treatment in Chennai (my city ) in India in 1998. Before going there I was labelled a Mitral valve patient by Allopathic medicine experts in the city. Chennai is considered the modern medicine health capital of India. So when I went and met the ayurvedic lady doctor, I showed her my MRI, CT and echo. She said she was not interested in those reports and asked me to describe my symptoms. That was the first time a doctor asked me to elaborate on my symptoms. In allopathy they dont have time to hear your symptoms (So many patients to see in a day, kind of quota). So I described my symptoms.

    She immediately said your problem has nothing to do with your mitral valve, but it is a case of rigid intestines. Till then I did not know of an organ called intestine in the human body. All I knew was a stomach and bowels. LOL. She put me on oil massage therapy for 15 sessions. The first few sessions were simply fantastic. My visual and head symptoms cleared. But from 5th session onwards I felt a tightening sensation in the chest. But I put up with it and went through the massages. (Which in hindsight was a mistake). I should have told her about the symptom.

    Anyway after 15 sessions she gave me a pill to take just once at night. This was for purging the intestines. I took the pill at around 9 pm in the night and within fifteen minutes I was running to the toilet every 10 minutes. It was tiresome. Then after all the contents of my intestines were flushed out I felt exhausted. Then for the first time I experienced a racing heart. My heart rate went to aroung 180 bpm. I was scared shit. I contacted her and she said it is all the toxins coming out which caused this. (In hindsight it was epigastric aura).

    Then after 3 days rest she put me on kashaya Vasthi (A herbal enema) for 5 sessions. But my symptoms started worsening and I became very sensitive to ordinary room light. So I rushed to a Gastroenterologist and told him my ordeal. He started laughing and said "Did you suffer this for 3 months. lt is just hypomotility of the intestines. He too missed my hippocampal sclerosis (Abdomen epilepsy) His treatment worked. He gave me cisapride and MPS methyl polysiloxane. I continued this treatment for two months.

    He said I can stop the cisapride as I was cured. But when I stopped all my epigastric symptoms reappeared. So he put me back on cisapride. The symptoms vanished. This continued for 2 1/2 years. Then I developed full blown IBS. He did not know how to control it. Then the cfs set in. Luckily around 2007 I consulted a professor of Neurology in Chennai itself. He did an eeg and told me I have Temporal lobe epilepsy most probably due to hippocampal sclerosis. He said it is due to a mitochondrial disorder. I am now taking Levetiracetam for this. My epigastric symptoms are under control. But my fatigue is still there.

    But if not for that brilliant ayurvedic doctor I would have been stamped a cardiac patient and they would have put a mitral stent and killed me by now. I am giving the link to the ayurvedic doctor's website. You have to get an appointment one month in advance. http://www.girijasanjeevani.com/ Why am I giving a link to a doctor who aggravated my problem ? Well diagnosing abdomen epilepsy is extremely difficult. But she diagnosed it as vatha dosham in Ayurveda.

    Unfortunately Ayurveda is not that good at treating epilepsy. But for CFS I think it is a good fit. You may not get 100 % cured. But even 80% is something fantastic. for us. If only I did not have the hippocampal sclerosis I would have gone back to her and set my system right. Mods if you think if it is inappropriate to give the website link you may remove it. There are many Kottakal trained ayurveda doctors in Kerala. But getting to Kerala with our kind of health will be difficult. Of course there are connecting flights available. But Chennai is one of the four metropolitan cities.Her clinic is in the heart of the city. You can find paying guest or hotel accomodation during the treatment. Chennai is not costly like Mumbai or Bangalore.

    Of course Kerala is called God's own country and also known as Venice of the East. So you should visit the state of Kerala once you become healthy. It is a beautiful place with backwaters. A laid back approach in contrast to the hectic lifestlyes in most cities of the world.
     
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  4. raghav

    raghav Senior Member

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  5. Gingergrrl

    Gingergrrl Senior Member

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    @62milestogojoe Although I do not believe that Ayurvedic medicine would help my own personal situation with autoimmunity, I am so glad that you are sharing about it and that it has helped you. I wish you had the opportunity to continue your treatments.
     
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  6. 62milestogojoe

    62milestogojoe What's a forum then?

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    No probs. Great detective story. The doctor who treated me was a very smart guy who worked with his colleagues first to figure out a course of treatment to address symptoms.

    Really smart guy! Methodical and skilled.
     
  7. 62milestogojoe

    62milestogojoe What's a forum then?

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    Thanks GG. We have to explore all options in the face of ME....I took a chance.

    No regrets and I do think the treatment makes sense. Can't wait to go back in November and undertake a modified protocol with hopefully longer lasting remission.

    Still hope we can formulate a AAB database specific for ME. Still think that may be the underlying cause or one of...I wonder if the neuromodulation helped remediate neuroinflammation.???
     
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  8. *GG*

    *GG* Senior Member

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    If she is GG who am I? LOL

    GG
     
  9. Jesse2233

    Jesse2233 Senior Member

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    Great that you documented this @62milestogojoe

    I'm wondering if the nasyam functions in a similar way to IVIG by transferring healthy gamma globulins from the donor mothers
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I am the OG @*GG* (except I just checked and you joined PR in 2009 and I joined in 2014 so I am clearly wrong LOL).

    Jesse, that was my original thought, too, when 62Joe first posted about his experience except that the amount of gamma globulin in breast milk would be so incredibly tiny compared to 100,000 different donors in each batch of IVIG, that I'm not sure if it could work that way?
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    Hmm good point. I suppose the same would be true for SCIG even though the dose is lower. The closest thing I can think of is bovine colostrum which some swear is as potent as IVIG in terms of antibody supplementation. But I tend to doubt that, and even so bovine colostrum is presumably from many different cows.

    Maybe the nasal administration of the breast milk concentrates antibodies more directly in the brain and makes up for the lack of donor quantity? Seems like a stretch as well
     
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  12. 62milestogojoe

    62milestogojoe What's a forum then?

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    Hi Jesse, can you figure this out kDA wise? Hip had a look at this earlier in the year and we couldn't figure it out but yes, I understand your thinking.
     
  13. 62milestogojoe

    62milestogojoe What's a forum then?

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    The GG formerly known as GG?;)
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    kDA?
     
  15. 62milestogojoe

    62milestogojoe What's a forum then?

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    molecular weight, in this case of Ab.
     
  16. Jesse2233

    Jesse2233 Senior Member

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    Ah got, I'm afraid that one is beyond me
     
  17. 62milestogojoe

    62milestogojoe What's a forum then?

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    No probs Jesse. Have to go to work now. take it easy.
     
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  18. manasi12

    manasi12

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    In ayurvedic medicine , nasya is mainly used to calm the vata dosha (similar to adrenergic or sympathetic activity ). It is said to affect the head via the nasal route.Off course it is a very individualized treatment and the medicine in nasya depends on the vitiation of normal composition of body.
     
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