Listen To M.E. – An ME/CFS Recovery Story III: Renewal

Posted by Cort Johnson

Click Here for  Part I/ Part II

When we last left ‘patient X’ he was in a semi-coherent state and had trouble tolerating even mild stimuli without pain. Emaciated and in pain he had  essentially resigned himself to dying.  Then, remarkably enough, he heard of doctor in his own area whom, he was told, was successfully treating ME/CFS. He would take one last chance.

A Leap of Faith A few days later I decided to take the leap of faith. I crawled into my dad’s car. We arrived at the doctor’s office where I crawled my way into the lobby. I laid in the lobby until my name was called. Dad lifted me up onto the table and the doctor walked in.

At this point I could only stay conscious when I was stimulated so he put his hands on my shoulders to awaken me. I could only mumble a few words for a short period of time. After I was done mumbling that I’m sick with mercury poisoning and a bunch of viruses I said “I have M.E,” the doctor looked at me and said in a very gentle voice. “I’ve seen this before and I know I can cure you. I’m a 99% shooter when it comes to curing patients who come in to my clinic.

He looked over at my Dad and said “Your son does have M.E and everything he has said is correct.” I said how are you gonna cure me? and he looked at me and said “All you need to do is have faith and just LISTEN TO M.E. !! ” Which I did.

He looked over at my Dad and said “Your son does have M.E and everything he has said is correct.”

I would not see him for another several days as we were awaiting test results.  He took the results very seriously. At this point I weighed 115 pounds and the tests indicated that I was in organ failure in virtually all my organs including being inundated with mold and worms in my liver.

A few days later he arranged for me to go to the hospital to get a pic line placed so that I could be fed intravenously. That night I got home from the hospital and my doc was at my house waiting for me. Doc said we didn’t have enough time so he was gonna start coming to my house to feed me at night and start my treatment. I overheard my dad say the first office visit was $500 and he could not afford the doctor so I told my doc that. Doc said “Don’t worry about the money”.

A few days after my doc started treating me I told Krystal that I wanted to go to the clinic one day. Boy, was that a mistake. When I got to the office I tried to lean up. I hadn’t really leaned fully upright from just a sitting position in 5 months or stood upright in 2 years. As a matter a fact I was eating flat on my back for at least a year.

Out of the Frying Pan – Into the Fire: Ouch I yelped!!! I had the worst pain I’ve ever felt in my chest. Doc came running over and did an ultra sound on me and he knew right away my lungs had collapsed. He said I had to spend the next few days in the hospital in case my lungs fully collapsed. When I got to the hospital they said my lungs were 15% collapsed on the left and 10% on the right which is known as a pneumothorax. They also discovered that I had pancreatitis.

But they told me my insurance company was refusing treatment and they were sending me home. Once again was I surprised, well, not really. In all my years of having this disease I don’t think the traditional medical community has helped me in any way.

Back to my apartment I went. This started my final spiral that would last about 2-3 weeks. Man, when I say my body was dead, I mean totally dead but with a heart beat. Doc could only feed me because of my lungs. During this time my blood pressure dropped down to 80/40 and I lost an additional 14 pounds. I was now down to roughly 101.

At this point I was literally numb, didn’t really have any sense of touch, smell or sight. I was almost comatose. Doc stands over me and says.. “Have faith, even more faith than me. You gotta fight, you gotta fight!” So I DID FIGHT and continued to fight as doc began treatments again after about 10 days.

Doc stands over me and says. “Have faith, even more faith than me. You gotta fight Mike, you gotta fight!”

“A Blob of Fat!”: The Renewal Begins – It’s now a few weeks later – early January, 09. I’m laying in bed and I feel this blob of fat on my tushy. I also could kinda see the walls around me!! I look up at this plant hanging in my room and I start saying PLANT out loud. Then I start spelling P-L-A-N-T right afterwards. I looked at the door and did the same thing. D-O-O-R. Then the window and so on. What the heck is going on!!?

It’s now a few weeks later – early January, 09. I’m laying in bed and I feel this blob of fat on my tushy.

Doc comes over and he looks at me and says “You’re CURED!! You’re gonna keep on gaining weight and your brain is retraining itself. You’re just gonna keep on improving. It will be like a train that keeps chugging along the path of wellness until you’re FULLY HEALED!!” He laughs and goes “Chuga, Chuga my friend.” Well, as amazing as that sounded I still was in disbelief considering I still felt so horrible.

Doc was right, though. A few weeks later I could lean up to eat for the first time in two years!! I could look at light for brief periods so I eventually took the blankets off the windows. That was so cool, I could see nature again and how beautiful it was. Then my noise intolerance slowly went away. I could only lean up completely for a few minutes but it was so great. Then I started to read just a few words again. Then I could speak a few clear sentences here and there by the end of January.

The Train Keeps Chugging: Walking and Talking: I was also well enough to go into the doctor’s office very gingerly, being able to walk about 15 feet slouched over. Then came the day I stood straight up for the first time in almost two years, perfect posture and I walked 20 feet just like that!! Then I walked 30 feet, then half-way around the building, then I made it all the way around the building!!! I was beginning to see very well again and the psychosis and dementia began too lift.

“It will be like a train that keeps chugging along the path of wellness until you’re fully healed!!” He laughs and goes “Chuga, Chuga my friend.”

Driving: By early February on our way out the door to docs I grabbed the car keys out of Krystals hand. My goodness, you should have seen the look on her face!! Sure enough I drove 20 minutes to docs with Krystal shitting her pants the entire way there!! Yes I drove, was I ready for Nascar? Probably not. I also went into a public place again for the first time. Yea, it was only a speedway gas station but again it was so darn exciting!!! I asked the lady at the counter if I seemed normal and she chuckled. Wow, that was such another wonderful day for me. Over the next several weeks I would continue to rehab my brain and body and relearn the world!!

Back on His Own: On April 5th Krystal calls my dad and says Jay has passed, 6 months after diagnosis. At this point I could show emotion and was so sad. Dad told me Krystal was gonna miss a few days. He said, “Who are we going to get to take care of you?” I looked at dad and said “I think I’m ready to be on my own again.” Dad said “Are you sure? I said “Yes”. Gosh, Such a twist of fate, what a bitter-sweet time it was for me. God Bless Jay and Krystal. Dad took $700 out of his next paycheck and bought me a car. That marked the day I was really free again. 14 years of bondage were over. 14 years a prisoner to M.E gone.

I don’t have much in the form of wealth anymore. I’m far removed from those days living on the beach running my own business. I have a beat up old car and a crummy old apartment in Ohio. No furniture except for my bed in my room and a platform in the living room I write on, using my old wheelchair for a seat when eating and writing. Most of my personal belongings got lost along the way.

I looked at dad and said “I think I’m ready to be on my own now I’m now 80% functional and expect to be nearly 100% in 6 more weeks. I can basically do what any healthy person can do. Life is grand, more grand than it ever was. I’m full of faith and want others to have faith as well. This time around I hope the world will really…LISTEN TO M.E.
May 10th, 2009

From the Editor This is the most astonishing thing I’ve heard in the five years I’ve been running this website. It’s so far beyond our conception of what the medical community can do for ME/CFS patients that it beggars disbelief. If so many people with a less severe case of ME/CFS can’t get help how is it that this person could recover – almost completely – in six months? It asks us to believe that one doctor somewhere in the United States has somehow gotten a very good handle at treating the most extreme cases of ME/CFS – something that’s understandably hard to swallow.

I would suspect that someone’s running some sort of scam. But this is not how one runs a scam. Scams work by focusing out isolated, vulnerable, usually ignorant people – not by testing them out on prominent individuals in a community – which, as you will see, is what ‘Patient X’ proposes. Nor did this person just pop out of nowhere – he frequently interacted on ME/CFS forums before he became too ill to do so. Rich Van Konynenburg, the creator of the Methylation-Glutathione theory of ME/CFS interacted closely with this person as he became more and more ill.

“I began to be aware of the details of ” X’s” condition when he wrote to me shortly before Christmas, 2007, though I had read posts from him to the ME/CFS internet groups prior to that time. He was one of the most seriously ill PWMEs I have encountered in 13 years of trying to help people with this disorder. His condition was such that nothing I could do was adequate to help him. He needed intensive onsite care and special, tailored treatment from qualified medical personnel.

I attempted to find people in his area who could and would come to his home to help him, and I communicated with several doctors, to no avail. As time went on, his condition became even more grave. What we could do was to pray for him, which we did.

At the darkest hour, in November, 2008, a physician who was willing and able to help him was found, with the help of a friend. The treatment he subsequently received was extraordinary, and the results have been profound. My hat is off to that physician, and also to the Physician upstairs.

” Rich Van Konynenburg

Of course, the big question is who this treatment will work on? This patient, who wishes to remain as anonymous as possible as he recovers – in part to protect his doctor’s identify – did not have a typical case of ME/CFS. (But then again what is a typical case?). He had a mild case of ME/CFS for many years but a stressful event kicked off more symptoms which lead him to seek more help. One treatment, in particular, left him horribly debilitated. (The doctor, interestingly told him afterwards told him “that is the risk we run” – he had seen that reaction before).

After that he reacted badly to every treatment he tried (except the last) with his health taking an incredibly precipitous descent. Detoxification problems were critical arena for him. Despite his high pathogen loads he believes that anti-virals probably would have killed him had he tried them. That’s obviously not true for all patients.

His symptoms reached a point that few, fortunately, ever have to face. If you take away their magnified nature, though, they’re not so different from the ones patients experience all the time; the exhaustion, the cognitive problems, the problems with stimuli and coordination, the orthostatic problems, and chemical sensitivities are all commonly found – certainly in much lesser amounts – in many people in the ME/CFS community.

What Now? His goal is to provide hope and to find ways for patients, particularly the less well off, to access this treatment, to provide safe facilities for them to use and ultimately to spread it beyond the small area it’s currently limited to. But there are significant problems.  His doctor has his hands full treating the patients in his local area. (He is a Doctor of Osteopathy (DO); DO’s are licensed medical doctors (i.e. M.D.’s) who specialize in the muscoskeletal system and focus more on preventative medicine. As with allopathic doctors (M.D.) they are licensed to prescribe drugs and perform surgery).

The Protocol: the doctor uses his own version of a technique called neural therapy that traditional western minded doctor’s probably wouldn’t touch with a ten foot pole. He believes that the body’s response to a viral infection, probably one or more strains of coxsackie virus and possibly CMV, alters the functioning of the amygdala and other areas of the brain adjacent to it resulting in the deregulation of the autonomic nervous system, HPA axis and immune functioning. The therapy is designed to re regulate psycho-neuro-endocrine-immune function so that the person can return to a healthy state of mind and body.

The doctor uses various treatments that integrate osteopathic, eastern acupuncture and homeopathic principles. A primary focus is a technique frequently used in Germany called ‘Neural therapy’ that has gained a margin of acceptance by the work of Dr. Klinghardt here in the U.S. His unique contribution to the neural therapy field has been his application of homeopathic formulas in place of the anesthetics usually used in neural therapy. These formulas are hand-picked on a day-to-day basis and are injected into neural points to return balance to the neuro-muscular-endocrine response and fight off the infection. He also utilizes prolotherapy, laser therapy, intravenous nutrient replacement and other techniques that help revitalize the competency of the body as a whole.

He has his license to protect; something that could conceivably be in jeopardy given the intolerance the FDA sometimes alternative minded physicians if he became too prominent. But he also recognizes that if he really does have a fix on how to treat these patients that this information needs to get out. If we can find a way to help him safely do that he is willing to try.

The Roadblocks – We see four roadblocks to this therapies acceptance.

  • Legitimacy – Patient ‘X’s’ is confident that this approach has widespread applications but until the patient and medical community sees more people that it knows become well it’s scope will naturally be limited. Our goal at this point is to rigorously assess it’s  effectiveness.
  • Cost – This is a hands on, time and labor intensive approach which means it’s relatively expensive. He was given the treatment pro-bono – but any doctor can only do that so many times. This limits it’s scope to more well-off patients something that he finds unacceptable.
  • It’s Unique Nature – The unusual treatment approach presents a biggest challenge to it’s widespread use. This is the only doctor in the US, so far as we know, that does this type of treatment! Other doctors use some similar procedures but he has altered them significantly. Our ability to get other physicians interested hinges on our ability to document it’s  effectiveness.
  • The Doctor’s Concerns – we all know the difficulties alternative oriented health practitioners can have with the FDA. If this treatment is effective across a broad range of ME/CFS patients it’s important that (a) this doctor be protected while (b) his protocol gets disseminated safely.

Our Plan – Our first goal is to try and document this treatments effects with regards past and current patients. We’re exploring ways to do that now. The treatment takes several weeks at a minimum to produce significant effects.

As noted earlier it’s not cheap; bills of up to $20,000 can be expected for really, really severely ill patients and it requires a significant time commitment on the part of both patients and the doctor. It’s obviously not for everyone but if you’re interested e-mail me and I can put you in touch with ‘Patient X’. Because we’re trying to document this treatments effectiveness hopefully you’ll be willing to go public with its effects. Basically we’re in a our ‘treatment trial’ stage.

We’ll be discussing the treatment in greater depth in the new Phoenix Rising Forums ( Register for the forums and chat if you’re interested. For now the discussion will be centered in the General Treatments Section

It may be that this procedure will always be – at least in the United States – a kind of ‘back-door’ treatment option. Since it takes considerable skill, training and experience to master it’s not something an MD can pick up quickly. Some practitioners do have experience in the techniques the doctor uses. Interestingly this doctor’s model of this disease, so far as I understand it, fits in well, with other theories regarding this disease – it’s his treatment approach that’s so different.

Patient X – How is ‘patient X’ doing right now? The road back has been exhilarating to be sure but, of course, not always easy. He started the treatments in late November of last year and takes them twice a week now. Periods of progress have been interspersed with down cycles – something his doctor says is a natural part of the healing process. On his four steak a day diet (!), though, within several months he’d recovered all of his weight. Eight weeks ago he went jogging for the first time. By mid-June – approximately seven months after first starting these treatments – he wasworking out for over an hour at a time at the gym and growing stronger.  He made his first cross-country trip in an airplane with no side effects in July. His intolerance to alcohol has disappeared.

Is it too good to be true? Will it work for others? Only time will  tell.

Cort Johnson

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