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David’s Story

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Editor’s comment: David’s mother sent me her son’s story a few days after I asked for photos of people who had died of ME/CFS. She hopes that when people learn of David’s horrendous experience some progress will be made toward helping patients with ME/CFS, and that David’s suffering will not have been in vain.

It is not easy to tell David’s story.

In February of 2011, at the age of 15 ½, David had an acute infection with fever, along with inflamed, suppurating tonsils. He took antibiotics, the fever went down, and everything seemed to go back to normal. Shortly afterwards he developed back pain. He had been working very hard in his garden, carrying heavy stones. This seemed the reason for his back pain.

The following months he seemed to be functioning, but afterwards we realized that he was suffering quietly. None of us knew about his sleep disturbance, because he never complained. He only told me about the pain, so he was seen by orthopedic doctors. But we didn’t understand why no treatment seemed to really help. At the end of summer vacation 2011, he told me one evening that he was not sure if he could manage school. I thought these were strange words from our son, who was very diligent regarding school.

By the beginning of October he was no longer able to attend school. He could barely move and lay in bed like a statue.

After a few days our family doctor referred him to a children’s hospital. They did many tests for orthopedic and rheumatic illnesses – there was no result. That was where David heard for the first time: ‘It is no wonder you feel so bad, if you don’t move at all…’ The hospital’s psychologists said it could be ‘all in his head’…

After 10 days of no test results and no progress, we took David back home.

At home, he got physiotherapy for his back, but now he seemed to develop strange sensitivities and odd explanations for his bones and joints hurting – a fact that augmented the impression that it was ‘all in his head’.

Our family practitioner was very concerned about the fact that he was at home, and ‘nothing was happening’ while David was getting more and more ill. In October he could walk the 2 km to the physiotherapy office, but by December this was no longer possible, and nobody could understand why. He lost weight although he ate as much as he could – and that was really a lot! – but he hardly moved.

To make the following months short: There were no positive results from any test, and every absent finding made the impression stronger that there was something very wrong in his head. Only we, his parents, said, “We’ve known him for 16 years now, and there is something not right with the explanation that his symptoms are only signs of major depression or somatoform disorder.”

The only measurable outcome was a very high NSE [serum neuron-specific enolase] in December, but after an intense search for neuroblastoma – with no confirmation – the value was declared as a laboratory mistake.

We lost confidence in our family practitioner, but had no alternative. She urged us to go to the psychiatric hospital. We believe she did this to free her of the responsibility she felt for the situation. She was not willing to order the tests we requested, such as testing epinephrine levels. Her reaction was “Yes, we could do this at some point, but NOW it is the time to ask a psychiatrist…”  That told us that she had already made a psychiatric diagnosis. We felt that there was something wrong with this, but we had no clue what the heck our son was suffering from. We kept searching for help, and I found a way to test his epinephrine levels as he was at home (not so easy if you have no doctor), but the results took weeks.

During that time we took David to a psychiatric hospital with very heavy hearts, but our question there was, “We don’t know what he is suffering from. Can you help him?”

After one week, we got the answer: “He has no major depression, he also has no incipient psychosis (as one doctor assumed weeks before). We don’t know what he has. But NOW we have to get him moving, because activity is the most urgent thing he needs.”

While he was in the psychiatric hospital, David got worse and worse. He got no help or attention for his physical needs. His oversensitivity to sound was very acute at this time but they made no compensation for this. He was traumatized.

In the second week of his time there, we got the results of the epinephrine test he had taken weeks before. All his hormones were very, very low, nearly alarmingly low. We showed the results to the doctors and asked for follow-up, or for more testing. The answer was that the tests were designed for detecting an overproduction of these hormones, so these results are meaningless. A few days later, David was taken to the locked ward.

With the knowledge we have now, and from our experiences over the following months, we now realize it was a miracle that we managed to get him out of the locked ward. Our reason was that we wanted to try to figure out what was happening to David with an endocrinologist. (But I will never understand why it was impossible to ask the endocrinologist at the hospital for advice?! David was in a university hospital, and all the specialists were right there!)

After 2 1/2 weeks in psychiatry David could no longer walk more than a few steps, so we had to lay him down in our car, because he could not sit for the 1 1/2 hour trip. He never recovered to the level he had been before being admitted to the psychiatric ward.

I had made an appointment with an internist who was a specialist in epinephrine problems a few days after David came home with us. It was he who diagnosed David with ME/CFS. At first the diagnosis was only a hunch, but time proved him right. Nine months after David was forced to leave school we finally had a diagnosis –  of something I never had heard of before. 

The following months David got slowly, but steadily worse. Mainly his oversensitivity grew. From December 12 until February 13 he was in a poor, but stable condition, so we gained hope for things getting better, we thought we reached the bottom of the valley.

Then, in the middle of February, he crashed in a way we could not imagine before. Each week, almost every day a new low point was reached.

One morning in the last week of March, my husband heard a strange noise and went to see what was going on. He found David on the floor, unable to move, in terrible pain. But he was conscious, recognized his father, and was able to speak.

David was brought to the ER, where they found a large brain hemorrhage. They couldn’t stop the bleeding, and after some hours, a second brain hemorrhage was found. They transferred him to a hospital with a neurosurgery unit.

He died 28 hours later without regaining consciousness. His father and I were with him until the end. His brothers and sister came this last day and said goodbye to him.

None of the medical professionals we met in his last two days ever heard of an illness called ME/CFS or was familiar with the symptoms David had.

Three weeks after David’s death, I went to a meeting of ME/CFS patients and care givers. This meeting was my first contact to patient groups – before that we didn’t have the time, the strength or the knowledge about what was possible.
David’s parents wrote the following letter to the health minister of Rheinland-Pfalz
Dear Health Minister,
Three weeks ago we lost our 17- year old son David. He died after two days at the intensive care unit as a result of an unstoppable brain hemorrhage.
Before his illness he was a normal teenager with no problems at school. He played cello for 10 years, planted his garden with devotion, cared for his birds, had a passion for chemistry and biology, and never knew a minute of boredom.
A year and a half ago he had become so seriously ill that he couldn’t attend at school anymore. Nine months ago, after a long odyssey, he was diagnosed with ME/CFS.

The last months of his life he was so ill that he couldn’t bear any sound, or the presence of other people. He couldn’t handle intellectual information. Daily life was nearly impossible for us and his siblings, because all of us knew that every sound gave him unimaginable pain.
In the last two days of his life, many clinicians cared for David: First aid helpers, ambulance crew, emergency doctors, intensive care unit crew, neurosurgery OP-team, and a further anesthesiologists and neurosurgery intensive care unit crew – not one single person of all these experienced and well-prepared people had heard about an illness named ME/CFS before.
Our dream is that in the future no ME/CFS-patient has to face the situation where the ambulance crew needs to spell the name of this illness into his walkie-talkie.

And that no seriously ill child have to wait nine months for a diagnosis, during which all treatment attempts worsen his symptoms, as took place with David.

And that parents, who have the unsolvable task to care for a seriously ill ME/CFS-patient are not threatened with the withdrawal of custody and don’t get letters from the government office for youth welfare.

They need help, support and empathy, and in very hard times the chance to get care for patients outside of their homes.

In the whole of Germany there is no means for meeting the special needs of patients with severe ME/CFS.
It is our dream that this fact will be changed.
If David’s pain and our loss will change something, then we will be glad and thankful.

Please do all you can to make this happen!
Thank you.

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15 thoughts on “David’s Story”

  1. Coachme says:

    Please pass along my condolences to this family. My heart breaks for them. Their struggle is way too familiar. Please tell them thank you for sharing this story. I will share this story. Please let them know the effort they put forth to write this will make a difference. ProHealth, thank you for leading the way in sharing such relevant and important information. Your organization does great work. Thank you.

  2. gcubed says:

    The family is in my thoughts, and their passion to change things in Germany, and perhaps beyond will be greatly appreciated by many who suffer alone and without help!

  3. me/cfs says:

    My heart breaks for you, David’s parents and loved ones. Thank you for sharing the goodness of David’s life and character in your account of his situation. A young man who was a good student and cared for birds and nature must have been blessed with exceptional parents, and David carried forth your goodness in his own way and own life.

    As to the medical account, I am drawn to one statement:

    All his hormones were very, very low, nearly alarmingly low. We showed the results to the doctors and asked for follow-up, or for more testing. The answer was that the tests were designed for detecting an overproduction of these hormones, so these results are meaningless.

    By sharing this one important fact, David’s situation may help point the way to the millions who suffer with ME/CFS throughout the world.

    To those who are suffering from ME/CFS or caring for someone who is, consider seeing a health care provider who practices hormone replacement therapy. Typically this is not an endocrinologist. Instead, it is a doctor who has been trained in the benefits and practice of raising hormone levels to improve health.

  4. Gail-Fenton says:

    My prayers are with David’s family.

  5. Ginas13 says:

    What a heart breaking story but unfortunately one that is very common. Doctors do not like being wrong or not knowing something. It is rare to find a doctor that will trust the patient. They often have preconceived notions of what you have and how to treat it.
    It doesn’t help that insurance companies often will not cover tests or allow you to go get additional opinions. I find these websites and forums can be helpful.
    All my best and so sorry for all your son and your family went through.

  6. AnnettePK says:

    I am so sorry for your loss; and for David’s suffering. I wonder if Lyme disease is present in Germany, and whether David was tested for Lyme.

  7. dartist11 says:

    It is important to have your hormones checked. I am going to a HOLISTIC Dr.s for low thyroid cause the regular Dr.’s only check TSH. This is not enough plus I get small amt’s of bi-estrogen/testosterone/progesterone/plus LDN in 4 mg.(5 months). LDN “Natroxone”is good for all autoimmune & pain, including thyroid.
    Regular doctor’s don’t know this.

    I have had ME/CFS FOR 35 yrs. Pain everyday. Stopping coffee helps &Glutin Free diet with 30 min. of walking. Everyother day.

  8. ISUMI says:

    Unfortunately, this young man was/is one of many who seek help for this condition. I applaud his parents in their efforts to get this information out to the public. I certainly hope it will reach the general public and an “official” medical publication or two.

  9. janecenzura@gmail.com says:

    So very sorry for your loss to you and your family.It is a sad story for the year 2011, after 30 years doctors are so ill informed, to the point of malpractice.
    My daughter was 10 in 1995, and came down with ME, which no doctor would believe me, but her school teacher noticed how ill she was and no longer able to be the active in gym.The only saving grace was I was finally diagnosed when I became totally bedridden in 1992, although at that time my Internist thought it was depression.
    Having been an RN and knowing I had to be aggressive to have Jessica seen at Sick Children’s Hospital in Toronto,Ontario.Canada the Doctors could not find a thing wrong with her and were ready to send us home. I said I was not going home until they did find out what was wrong with my daughter. So they sent her to a psychiatrist who within ten minutes diagnosed her with ME.
    I took her totally out of school for six weeks in March, she was placed on an antidepressant to help with her pain and sleep. I let her regulate her activity level, if she was well enough to go to school, even for a few hours. In the fall she went back to school full time, her teacher could not believe the difference in her health and activity.
    Now she is 29 years old, can not sleep, headaches, hypothyroid and the doctors are as stupid as they were when she was 10 years old.
    Even if they are aware of ME/CFS doctors continue to be ignorant to the fact it exists. SAD, sad, I really believe it will take malpractice lawsuits against these DR. for them to wake up and believe. Keep a journal or a recording of what your DR. says, does and the mistakes they make.

  10. JWest says:

    This is so sad. The situation in some European countries seems to be very bad indeed. Reminds me of some of the stories covered in the film Voices From the Shadows (http://voicesfromtheshadowsfilm.co.uk/). Though I too was mistreated by my original MD and sent to psychiatrists for many years I finally wised up and accepted I had CFS/ME (thank goodness for the internet, and this was 17 years ago). I too had weight loss and severe sensitivities with my CFS/ME. Luckily I found an MD specializing in endocrinology and metabolism who has stabilized and improved my health over the last 7 years or so. I was eating twice the recommended amount of protein when I first saw her and she found that even with that protein intake most of my blood amino acid levels were way below the normal range so I took free amino acids in pill form which brought up my levels. She also found I had no measurable pregnenolone (from which all other hormones and cortisol are derived). Both of these tests are through regular labs here in the USA and can be ordered online if you don’t have a willing doctor (search for order lab tests online, there are several companies who will order the tests for you. It is done through LabCorp which has locations almost everywhere). Gluten (and dairy and sugar) free stopped the stomach pain and like some others mold and other environmental triggers can make my symptoms much worse very quickly. Also thyroid and a number of things needed to be addressed including neurotransmitters like norepinephrine which is mentioned in the article.

  11. maryannemhope says:

    I wish to extend, my heart-felt condolences, to David’ parents… Such a heart-breaking story!

    It is my belief, that there is an International cover-up, regarding ME/CFS… which has all its foundations, based within The Pharmaceutical Industry, and subsequent manipulation by Dr Simone Wesley [Phsyc’ LND] who with the support of his marital partner and member of the British Parliament, have conspired with International Governments, Large Insurance companies and the W.H.O. have between them, created such unbelievable suffering and complete disregard, of OUR HUMAN RIGHTS..
    Re-classifying the disease as a psychiatric illness, and thereby pumping out vast amounts of these phsyc med, which obviously support the Big Pharma’s and reduce the Payments, to claimants, from Insurance companies.

    This cover-up, is all about ”MONEY’,

    Mind control and manipulation… poorly researched, immunisations, causing polio like symptoms…
    This is surely one of the biggest cover ups ever..

    we are the forgotten, the ghost people…. our lives are destroyed by this corruption. we have little support… and treated with contempt…

    Sadly, there are few GENERAL PRACTITIONER’ with any knowledge of this disease… the truth is being well buried!

  12. bankteller says:

    So very sad for David and his family. I read a post concerning Simon Wesley. This man was instrumental in discouraging the much needed research concerning this debilitating disease. Shame on this man! I only wish he could experience half of his life being taken away from him with this. I had a virus in 2002, and have not recovered. I don’t dare mention ME/CFS to any doctors. They either say there’s no such thing, or immediately want to send me to a psychiatrist. I went, and the psychiatrist told me that I do NOT need him. I am physically ill. But, no one will listen. I blame Simon Wesley for putting a stop to the research we so desperately need. We need to remember that people with MS were put in institutions for the mentally ill for years until they discovered, finally, that it was a disease. God help us.

  13. shianne7 says:

    This is a pathetic shame that I know to well the suffering David and his family went through. I have been living a nightmare from hell since the early 80’s. Same symptoms of his and many more that I know his mother didn’t mention. [ am so sorry anyone has to endure this evil sickness all alone. Yes, your family is there and it takes a toll on their lives. Mainly, because it is a never-ending feeling of helplessness for our loved ones. To David’s Family there is no way to say how lucky he was to have someone who cared. However, the people that took that oath as Doctors have failed your son and myself!!My family don’t understand my suffering and to list all the symptoms and years of relentless suffering means nothing to any Doctor I’ve visited. I’ve been laughed at only to go home back to my dreadful being. When a dog barks or birds chirp constantly or all the other bizarre daily happenings that are so traumatic on a sufferer, they just think I finally went insane. Oh yeah, at first they tried to say I was depressed and needed to get out and move around even though I was crawling to the bathroom for 6 months due to weakness. To make a long story shorter, I live in Lakeland, Florida and since 1995, have pretty much been a vegetable. We pay insurance and can’t get a Doctor to even hear my symptoms. They say I have to come back because I have too many listed for this visit. HUH???? I was told I would just have to live with the pain and weakness. I have been told I have FMS and CHRONIC FATIGUE SYNDROME IS A SECONDARY DISEASE. I don’t want pity,I just WANT TO KNOW WHY I’M DYING????? OR IF I’M NOT,I MAY AS WELL BE THE WAY I’M TREATED LIKE A PIECE OF TRASH. WELL, MAYBE NOT, ATLEAST PEOPLE REACH OUT AND PICK THAT UP. MY ON GOING LIST OF CHRONIC WEAKNESS,PAIN,SPASMS,BLURRED VISION,IBS,CHRONIC FLU LIKE

  14. edesnod says:

    I was sitting in the living room watching TV when I heard my wife yell from back computer room. I came quickly and she said I had to read this. I told her to forward it to me. I chose to read this story about David.
    I met my wife in 1993. I took her to the hospital as a favor as she suddenly could not drive due to an accident she had due to what the Doctor’s called a focal seizure. At the time I washe avily involved with a company that marketed an Herbal Tonic called “Km” which was a Potasium Supplement made from 14 tonic herbs. I immediately put her on this tonic. She took it for over 2 years and had a recovery in a sense.
    So for the next 10 years I believe as a result of the health changes she experienced she seemed to be much better. She has been a diabetic since 15 years old. Over the years I would get this tonic for her but it became kind of expensive and there have been long periods when I could not afford it. She is 60 years old now and she seems to be getting worse. So I bought 4 bottles of this tonic now called “JC Tonic”. I took about 1/2 a bottle and decided to leave the rest for her. Just last weekend, right after Christmas, we planned on going to see my son and his family 1 1/2 hour drive from here. We were anxiously waiting to go. That Saturday morning when she awoke from sleep around 12 noon she told me she could not make the trip. She went back to bed and slept the whole afternoon. She got up in the evening and could not stay awake so went back to bed and slept until 2 in the afternoon that Sunday. She got up and went back to bed early that night and slept another 12 hours. She has never done that. I am a little concerned. She still doesn’t seem to have energy.
    The reason for my telling this short story is that she has a lot of the symptoms discribed in David’s Story. Her symptoms seem to be mild compared to his. But I realized that her annoyance at my intellectual conversations and tellng me to stop talking!!, some evenings constantly telling me to turn down the volumn on the TV when I could barely hear it to begin with, and not wanting to be around people, could very well be Myalgicencephilitis (spelling).
    In my opinion if it wasn’t for the Health regemines I have discovered over the years and our following them she would be in much worse condition. Or it could be that she just has always had a mild case of the disease.
    In any case I am so sorry for your experience. No one can really imagine what you went through. I can imagine to a small degree and hope the same thing doesn’t happen to her.
    Feel free to contact me for more information on the JC Tonic. I do not sell it but I recommend it. Anyone who wishes can email me at oakcreekaviaries@gmail.com any time. I would be glad to talk to you and I am sure my wife would feel the same way.
    Our prayers are out to David’s family and all the rest who suffer from this disease.
    Oh by the way I am a conspiracy theorist and I choose not to get into that lengthy dissertation I have been known to do so many times. I was a health insurance field underwriter for over 25 years and learned a lot about symptoms from my clients after talking about health problems with people all day long for all those years. When I saw so many miracles with this Tonic and hearing that the Doctors would try to take those sick people, who got better, off of the Tonic. I would get so angry. I eventually met people over the years that shared things with me and I became educated about the Military, Pharma, cartel, and learning the stories about the over 100 research scientist that had their health discocvery and records supressed or mysteriously they fell off the earth, or had some suspicious accidental death. It goes on and on. I feel sorry for the Doctor’s that ignorantly refuse to hear or acknowledge that they don’t know everything about health. The Doctor God’s.

  15. vivienhome says:

    What a heartbreaking story. I feel so sorry for the parents and family of this young man.
    As a mother (with serious ME/CFS), i can imagine the suffering he was going through and that no-one listened to him or his family must have been so traumatising. I am grateful that i have this illness and not one of my children.
    I sincerely hope that one day, the medical profession in all countries across the world will take notice of the devastation this illness causes, so that young people like David get the treatment they need and deserve!
    How cruel and callous that this goes on!

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