My research obsession

After I got my diagnosis, even with the crazy class they put me in at the Mayo Clinic (see earlier blog entry: My Experience in the Jacksonville Mayo Clinic's CFS program), I felt both elated and empowered. Before, if I researched my symptoms to find an explanation, the medical community would think I had Medical Student Syndrome and write me off. With an actual diagnosis instead of just mysterious symptoms, I could finally research my disease to my heart's content and not be scared of censure! With this in mind, I was determined to find out all the information I could about my disease so that the doctors, who I had lost all confidence in at this point, couldn't mislead or mistreat me anymore.

The first thing I did was get my hands on any documentaries on ME/CFS that I could find...even ones from the past. Documentaries are great for getting a basic information and give you a platform to dig deeper. I watched Forgotten Plague, Voices from the Shadows, and I Remember Me. There was another documentary I watched from the 80's but I don't remember its name. I also eagerly awaited the release of Unrest and followed its progress on facebook. Through these documentaries, I learned what COULD happen to me eventually, especially Voices from the Shadows. I could get bad enough that I won't be able to leave my bed and spend years alone, in the dark and in silence. I also learned about the political controversy surrounding this disease and the lack of understanding from doctors and the public. Forgotten Plague also gave me some tests I could take to help and theories as to what caused my disease.

From there, I hit the internet. I had a list of questions about my disease and would research until I found the answers. My questions centered around the theories into the causes for this disease, proof that it was a disease and why it isn't a psychological issue, what could be causing certain symptoms, possible cures and ways to help, etc., etc. I only looked at credible sources such as medical papers, government reports (which can be unreliable but are considered credible), and news articles with references. I was like a woman possessed.

All I could think about was my research. My family got sick of talking to me about it! During that time all I would say is "This is so interesting! Did you know they think the communication problems is caused by..." or "I am so angry! Did you know that the reason most doctors treat ME/CFS patients bad is because..."! My family was even beginning to worry about me.

"It is good to want to know about your disease," my mother said to me one day, "but there is such a thing as being too obsessed. If it's all you think about, that isn't healthy!"

When she said this, it didn't stop me. I assured her that once all my questions were resolved and I felt that I read every resource I could find on the topic, I would stop. I wanted to be an expert in my disease! If I knew what was happening to me and the most recent answers on how to fix it, along with references to back my knowledge up, I can have some control in how I was treated!

And, after a couple months, I finally got to that point. All of my questions were answered and I had my hoard of sources to refer to. True to my word, I stopped obsessing and moved on to other projects. But first, I took the most relevant papers that explained this illness and possible treatments and sorted them into categories. I also put suggestions for documentaries and books to read. Then, I went to the Fed Ex store and had it all professionally bound and covered. I was now ready.

My next doctors appointment with my primary care doctor, I gave her all the research. She flipped through as I told her what I had found. I talked about viruses, mitochondrial damage, the Stanford brain scans, inflammation, post-exertion crashes, why mental exertion was just as damaging as physical, the immune system and T-cells, the newest CDC meetings (in 2015) and their exciting decision, and about the PACE trials and why they are wrong. After that, I asked her if she was willing to work with me based on this information and not the current treatment method her affiliated hospital recommends (which was cognitive therapy and graded exercise at the time). After all of that, not only did she accept, she asked if she could pass the information I collected to her colleagues. I was so proud of myself!

Through my research, I found that Stanford Medical School was the best place to go for treatment if you have ME/CFS. One of my requests to my doctor was to get a referral to go there and I did get to eventually! But that is a whole other story...

Comments

damn your pushing it a bit with four fish lol . when you have a disease the world wants to ignore what other option is there but to search for answers yourself . nicely written piece .
 
Good for you! It's a fight for life isn't it? And of course why not get at least a little bit "obsessed" with fighting for your life back? That isn't even a selfish wish. It's for LIFE, and for you and your family in the end. It gets to the point where no one else is going to put the research in -so we either do, or we don't bother. You did, so you have a fighting chance now.
 
Most non-communicable, chronic diseases are related to mitochondrial malfunction.
DDW (deuterium depleted water) can be helpful. But DDW alone is not capable to reverse disease conditions. It definitely must be used together with hydrogen. Hydrogen can be infused into DDW. But the volume infused is low--about 2% in volume. For this reason, drinking DDW (with or without hydrogen infusion) should be accompanied by hydrogen inhalation, for serious conditions.

High purity hydrogen miniature storage tube (for 10L or 50L capacity) is expensive.
Small size hydrogen water maker (using electrolysis process, Proton Exchange Membrane of DuPont) can be considered for this purpose.
Small, potable hydrogen water maker, with an inhaler/nasal cannula, may produce about 5ml per minute hydrogen, 99.995%.

It is recommended to use ONLY DDW to produce hydrogen for inhalation.
All waters, filtered/purified or distilled, contain 150 ppm deuterium approx. DDW has less than 110 ppm deuterium. It is not necessary to buy DDW with very low ppm.
Put 2 sets in parallel may produce 10ml per minute for inhalation. A good flow rate is between 10 to 20 ml per minute. Flow rate much higher than this volume is not necessary.
Check info about hydrogen for therapeutical use: molecularhydrogenstudies dot com
About DDW--there are several makers, in Hungary, Romania, Russia and Taiwan.

Do some research regarding DDW, molecular hydrogen, and mitochondrial disease.
The combination of DDW and hydrogen has a synergistic (disease modifying) effect.
Applied separately, neither has sufficient power to cure serious disease such as ME.
 
hello, i'm interested in knowing more about your research on hydrogen and ddw combined.
could you please contact me with a personal message?
thanks in advance,
wolfgang
 

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