A Goodbye to Jason Breckinridge (2006)

Jason was only 23 when he died. He’d had CFS for about 5 years and following a car accident Fibromyalgia for a year or so. Jason was an unusual person; bright, articulate, full of intellectual energy and enthusiasm.

Jason first posted to the CFSFMExperimental chat group in December of 2004. He didn’t post regularly until July but from then on the message board was filled with detailed, often quite technical posts. Who was this guy I wondered, as I tried, often vainly to keep up with his ideas. I was surprised to learn that not only was he quite young but that he managed to keep up his enthusiasm in the midst of what appeared to be a difficult home environment. Despite his tragic passing Jason's enthusiasm and creativity left me with a sense of hope and that is how I will remember him.

MESSAGES OF SYMPATHY

(Thanks to Sue Bailey for providing many of these)

People from around the world expressed their dismay and sense of loss at Jason’s passing. There are too many to provide them all but here are some short excerpts from a few of them.

Barbara from Canada expressed the thoughts of many of us when we first heard the news ‘I was absolutely shocked and stunned by the news of Jason's death…He was so full of hope and expectation"

Sylvic from France wrote "What a shock it has been to lose him... He was so young, and full of life despite our common illness. We will miss him a lot, we already miss him a lot."

Jan from Australia said "I feel deep deep sorrow at his death. His light shone so brightly. He has touched all of us with his enthusiasm, generosity of spirit and his dedicated research. I hope he had an inkling how much we valued and admired him."

Katrien from Belgium wrote "His sentences were full of hope and life. I will surely miss his presence. May he rest in peace"

Kathryn from Canada wrote "Jason, we never saw your face or heard your voice, but you were one of us. I will miss your writings on our group; the CFS monster has taken another precious soul from us. …You are silent now and at peace. Rest quietly, while we mourn."

Jo from the UK wrote "He had so much potential and it is tragic that he is no longer with us. I will miss him greatly, he will not be forgotten."

Rich from the San Francisco Bay area wrote "Jason was kind, intelligent, and highly motivated to find a cure for chronic fatigue syndrome. In spite of suffering from this fatiguing disorder himself, he was tireless in pursuing a cure. As a researcher, I found his ideas very stimulating, As a human being, I appreciated his great kindness to others, going out of his way to help them with their own particular issues, while he, himself, had his own ongoing struggle."

Lisa from London wrote "He was remarkably brave to carry out his work under such adverse circumstances and I admired his strength enormously Had Jason lived, with his talents, he would have gone far and achieved a great deal. It is a great loss."

Jason’s doctor from New York, Dr. Enlander wrote "I am devastated by Jason’s death… Jason was a kind, bright, enthusiastic young man. He will be missed by many friends and family. He was snatched from us in the prime of life."

Sheila from Scotland wrote ‘He touched many lives through the Internet... we have to fight on trying to work out what is causing this illness….just like Jason did."

Cort from San Diego wrote "Jason was our partner in fighting this disease and he was very fine partner indeed….the world is a little less bright without Jason in it. His death exposes both the moral and scientific hollowness of those who prefer to see this disease in psychological terms and underscores the tragedy that is CFS for hundreds of thousands of sufferers across the world."

Donna from North Carolina wrote "Jason was a beacon of light in the often times rather dark world of CFIDS…His enthusiasm was contagious, especially for us long term sufferers, and he will truly be missed"

A quote from Pam in England is perhaps the best way to end this tribute "He must not be allowed to die in vain, we will get to the bottom of this tragedy and doctors must get to hear about the effects of this devastating illness…It is up to us to inform, question and debate the horrors of CFS".

A SELECTION FROM JASON'S POSTS

Nobody on the chat lists appears to have actually known Jason apart from his postings. We knew Jason (and know each other) through our words. There are no faces to put to these words, nothing physical at all really, and often not much of a story …. just the thoughts and ideas and strivings of people trying to come to terms with and conquer a difficult and mysterious illness.. Rereading some of the posts Jason contributed over the period of time he was with us is perhaps the best way to remember him.

Jason was unusually giving with information about all aspects of his life and it was a joy reading his posts. He was a prolific poster; in one four day period early in December, for instance, Jason posted 28 times to the CFSFMExperimental and CFSResearch groups. Between the Dec 12th and the 15th the day before he died Jason contributed 13 posts. A lot of people fed off his reports and they generated quite a bit of discussion. His detailed posts also give us an unusually concise overview of his treatment protocol during the last months of his life.

He had enormous fluctuations in his health in the last half of 2005 but had, surprisingly, made substantial progress overall. We pick up Jason’s trail in July. Not surprisingly he felt he was hot on the trail of something and it was good to hear that his health had recently improved dramatically...

JULY - On July 3rd speaking of his ‘years of nonstop research’ he was excited to report that ‘after 3 days/nights with no sleeping’ that ‘EVERYTHING (CAME) TOGETHER nearly at once while (he was) just sort of unconscious, staring at the screen and not really thinking’. He was at a real high and requested help, both financial and intellectual to help him prove his theory.

None was forthcoming; in fact, no one replied on the list and he didn’t post for another two weeks but July was a good month for Jason. An inveterate experimenter Jason continually adjusted his treatment regimen and he’d recently hit on a good package; four things he was taking (low dose naltrexone (LDN) 4.5mg, nattokinase, maitake d-fraction, and B12/magnesium/glutathione injections) had brought him more energy, greatly increased libido, no constipation or diarrhea and much less pain. Most of it he felt was due to LDN.

By July 26th things were looking up enough that he was able to report that ‘I have recovered 75% and continue to see benefits (and) was basically bedridden’.

His only really big problem was sleep and that problem was somewhat embarrassing. He reported. ‘My sleep is DEEPER when i get it. The problem is actually rather embarrsing……. Ill just say it bluntly : the reason i cant FALL sleep on liquid low dose naltrexon is because of constant noctural erections. They are constant and wake me up. My sex drive is also high with this and my orgasms are BEYOUND this EARTH. Just too much for me." What a problem!

AUGUST - At the end of August he reported that he continued to see benefits; his candida had apparently cleared up (no white tongue) and his temperature had risen about a degree and was now normal. He also appeared to be undergoing regular herxing – having a fever for a day or so every week or two and then feeling better. He said he felt "very ‘different’ after 3 months on naltrexone. He had also added a substantial number of supplements to his protocol; including mag sulphate, folic acid and b-12 injections, NAC, nattokinase, b-6, b-3, selenium, creatine, a protein supplement and increased salt intake.

The only real problem was a trip to the hospital from excessive vomiting and dehydration. The hospital diagnosed increased calcium and magnesium injections stopped the vomiting.

On August 28th he reported that Dr. Enlander has prescribed 2400 mg. Neurontin for him and that it also was working really well: "Neurontin significantly helps many PWCFS including me, in fact it can make me feel almost normal. Good sleep. Energy, and no pain." And that "Neurontin is stimulating for me and just makes me feel centered and normal." He would echo these thoughts several times during the next month or so.

SEPTEMBER – Apparently not satisfied with his progress on September 1st he reported he had embarked on the salt C protocol but it had left him nauseous and herxing at least at first.

On Sept 3rd he noted that he didn’t respond to many antibiotics anymore because he’d ‘overused them so much’. He also noted that Zithromax had given him a seizure. On Sept 6th he contributed another very long post. In a series of posts he reported how obsessive he was at learning about CFS, "I research 24/7 on every single resource on the net, people etc." and that sometimes he got so deep in his research that "I have gathered far too much information for my brain to handle.". This naturally lead him to be sometimes less than organized in his posts. ‘My replies will go way off topic because my mind is buzzing with CFS and related ideas.

One part of his need to communicate was his loneliness and Jason was upfront about how devastating CFS had been to his social life.

"One reason may be because I am very lonley. Like many of us, I lost all my friends, girlfriend (of 5 years) and my job and life. I am 22 and still fighting for disability. I live with my parents who don't support me and they are not very nice. I am college graduate but cant work, UNLESS from home….(any suggestions?)"

He did have one big asset, his doctor; "my doctor is wonderful (Dr.Enlander, i suggest anyone in NY or near to see Dr Enlander, he knows it all….. and is compassionate and will do almost anything to get your life in order the best he can."

Not surprisingly he didn’t feel his brain had been affected by CFS saying ‘my brain has not been effected by CFS (at all even! - in fact i feel very able to learn + understand and comunicate, though obviously when I am overstimulated. I can't stay on one subject."

Surprisingly given his volubility we learned that he was pretty shy, that "in social settings I am the shy one’ and had developed anxiety and agoraphobia and depression since his car accident. He was about to start another drug (desipramine) and was still happy with Neurontin considering it ‘one of the best main or co treatments for CFS and FM’. Sometimes he felt pretty good stating "I sometimes feel almst normal, if i get sleep, and with the LDN" and hoped his current protocol might "be the key for me and I hope some of you." Despite his problems he felt he might be on the right track.

On Sept 12th he updated us on his full protocol which had continued to rapidly change. He had added xyrem for depression and sleep (and it had helped), mag sulphate injections, vinpocetine to increase blood flow and was going on an antidepressant, probably despiramine because depression had turned into a big problem "The depression this disease brings is just getting to me badly, I am agoraphobic etc... since Jan when my Fibro set in". He was excited starting the anti-elastase antibiotic cefobid recommended by De Meirleir and had stopped nystatin (no more yeast problems), methylselenocysteine (lots of selenium in other places), inositol, Salt/C (too much herxing but wanted to return to it), Samento, Zofran (not nauseous anymore), niacin, thiamine.

On Sept 16th. During a discussion on isolation we found out what a difficult home environment Jason was caught in and how important researching and the internet were to him. He said quite poignantly

‘I am recently giving in to the antideprsssants i am just so depressed. i have no friends in my area, no job or vehicle anymore, nothing. i live with my parents who are not supportive mentally. So I sit in my room all day or in bed and research CFS/FM and related. I know a lot now about medicine and stuff because of years of reading about this stuff. Without the net, i do not know what i would do. I would be all alone."

By Sept 29th Jason was in real trouble; despite his earlier success with it Jason had decided to get off Neurontin but it was turning out to be brutally difficult; He stated "I am trying to withdrawl from neurontin atm and i cant. im having terrible problems...".

OCTOBER – By the middle of October Jason reported that he was suffering constant nausea and that it was nearly impossible for him to drink liquids without vomiting. The vomiting induced dehydration had gotten so bad that he’d had to go the hospital five times to get IV’s in the last few months. He said "As soon as the neurontin starts leaving my system, my palms become clamy, sweating, cold (as well as my feet) and i vomit anything that goes into my mouth and dehydrate, at this point its the hospital or i take 1 neurontin"

A psychiatrist finally told him what was going on but he was clearly in for a long haul. The psychiatrist "said it could be months but i will recover. Blah I hope so cause this is worse than any withdrawl i have ever been through." At this point we learn the reason Jason was going through all this turmoil; ‘This was all so i can start fresh on the Blasi protocol." (!)

He had researched the Blasi protocol thoroughly. On October 14th after "reading nearly every bit of information on the product, protocol and how it works, and then reading *literally* every testimonial and all the messages from every group, AND the archives since 2004(!)" he reported "they all are in significant remission", and that success was "just a matter of sticking with it".

Despite his problems with Neurontin Jason posted regularly throughout October on a wide range of topics including naltrexone, gene expression research, HHV-6 and glutathione, MHC class molecules, Stat I, etc., etc. He posted, in fact, more in this month than any other to date.

Still unable to get off Neurontin fully Jason started Recup. It seemed to go okay with the exception of him feeling dehydrated. We get a good look at the scale of his problems with sleeping when Jason stated he was happy that "I am able to fall asleep for about 3 hours a night which is amazing for me, especally during this neurontin withdrawl."(!).

By the end of October Jason was plainly not sleeping any better. On Oct. 29thhe posted on 12:25 AM, 1:19 AM, 2:17 AM, 2:29 AM, 3:48 AM, 4:47 AM, and 6:41 AM! and then added seven more posts that day (!)

Jason didn’t post much in the first half of November. On Nov. 15th however he reappeared in a big way posting 10x’s in one day. In response to a query as to how he was doing he said that he was now seeing a neurologist and that he’d also stopped another former success, low dose Naltrexone (LDN). This apparently had caused problems; "I am suffering numerous infections apparently from being off LDN. I have much more pain in my muscles, and now see that I may have 'endorphin' withdrawl. I had community aquired pneumonia, however it was atypical probably c pneumonia" Not only did he now have pneumonia but was also "suffering from suspected edema in my brain,specifcally splenial edema" which was a side effect, from the drug, Lyrica, that had replaced neurontin! He was now using L-Theanine, Klonopin and low dose neurontin and was scheduled for an EEG with his neurologist.

He was excited to report, however, that Dr. Enlander had gotten in Dr. Kerr’s gene expression study. Meanwhile he posted long posts on glutathione, glutamate, RNase L, etc.

He didn’t post again for another week when he noted he’d added benfotiamine, a fat soluble form of tiamine, good for nearly all neuropathies it seems" and then a day later stated he’d been "prescribed Zithromax for community aquired pnemonia/bronchitis". A few months earlier he’d noted he’d had a seizure while on Zithromax but now found that "Many symptoms seems to be improving. Dr E prescribed it after I mentioned the 3-day pack helping. My gut health has gotten better too. I am also taking diflucan at the same time though" and was in the process of switching to a more ketogenic diet’"

A few days later we found that he now attributed some of his withrdrawl symptoms to getting off LDN and that while LDN had removed his fibromyalgia pain it was apparently the cause of his insomnia. Taking LDN at night tricked his body into producing more endorphins during the day and took away his pain, but soon after stopping LDN he ‘developed an pneumonia (which continues) as well as severe constant bruxism (a known effect of opiate withdrawl and ….and restless legs syndrome".

Yet this was a silver lining to these events; he said that "All day long i feel shitty now and sick far worse than before, however, at EXACTLY 9:15PM which was the average time i took LDN 4.5mg for 4 months, all my pain goes away, my many years of cold hands and feet warm up perfectly, I get in a good mood and most of all, my sleep is so good now its just not right. I wake up feeling bad, but i require less sleep and dont feel sleep deprived at all… In essence, I am CFS-free and perhaps feel better than I have since I was very young, but only bweent 9:15PM and around 3AM, the exact time I had a constant blockade on my MU opioid receptors using LDN"

He was close enough to feeling well to state if "all my other natural sleep inducers kicked in, I seriously dont think i would have any CFS or FM symptoms.". This was about three weeks before he died.

Instead of taking LDN at night Jason decided to turn Dr. Blasi’s protocol on its head and use it in the morning. If he was correct the "MU opioid receptors will upregulate, become more responsive to my own bodies endorphin peptides and actually remiss all my symptoms". Two days later he reported on some evidence that LDN was working in autism patients.

Meanwhile he was as upbeat and creative as ever on most of his posts. On Dec. 5th (at 5:18 a.m.!) he said, regarding the similarity between cystic fibrosis and CFS "I am telling you there is a clear connection! And asking ‘Anyone researching this stuff see all this? That night he was on another tack reporting that he thought the endorphin dopamine interaction could play a role in CFS and its related diseases. Always eager to share he stated ‘if anyone wants a detailed explanation on any of those diseases and endorphin and dopamine relation please do ask as I am eager to respond and explain’ and noted that he was ‘currently writing a paper on this’.

In the last week of his life Jason seemed more lucid than ever. His July posts, while always informative were sometimes rather chaotic often containing incomplete sentences, grammatical errors and misspellings. By December he seemed much more relaxed, unless he was really excited, he wrote in complete sentences with few grammatical errors or misspellings. At least judging from his posts he seemed doing much better.

December 15th - Jason traveled to New York City shortly before his death to see Dr. Enlander. Apparently he thought he might be giving up a lot of blood and queried the group about the effects of that. It turned out that he did give up a lot of blood (16 vials) but he returned from the trip as enthusiastic as we’d ever seen him. He spent about two hours with the doctor who laid out a new treatment plan and assured him that his chances for going on disability were good.

About 7:30 p.m. that night he contributed a long post that ended with him saying "He is very compassinate and will work with you. I really think he is the best 'overall' specialist in CFS and FM."

Apparently in the next hour his parents told him they were kicking him out (in middle of a very cold New York winter) and called the police.

In Jason’s last post at about 8:15 p.m. titled "Please HELP me’ he was clearly distraught. It was alarming to see this usually enthusiastic young man reduced to near tears.

First, i live in Central New York, in the Baldwinsville/Liverpool Area with my parents I am 23 years old male, college grad, and I will explain my terrible delemia :

I am begging, anyone I have no income and am in much pain unless on medications. I try new things all the time and am hopeful I will be remissed. My problem is my parents are unsupportive and alcoholics and consome sedatives illegally bought from their friends. They mix it with alcohol and are very emotional and now mentally abusive to me. It has reached a point where I can no longer live with them, they called the police on me tonight because they an "asshole sick messsed up (as in fibromyalgia) fuck" or something who wants to kill them to get their money. This is so untrue and rediciously and I am terrified. The police came and my parents do have the right to kick me out on the freezing cold street, as I am 23 now. They are paranoid due to chronic alcohol and sedative useand blame me for all their problems. I am crying I will lose all my possestions and the rescue mission is full.

His needs were not great, not surprisingly given its importance to him, they included internet access "I need a place to live, to bring my belongings and a bacthroom, internet access and 25 dollars a week for food that is all". Despite his difficult circumstances his long term future was not bleak at all, within six months he planned "to have income, SSD, SSI, medcare and madicaid" Jason’s family had recently been put on a health plan that didn’t pay for many of his medications, plus, of course, he would be free of his really bad home environment and there was always Dr. Enlander. But for now he was in real trouble; "I dont have much time before my parents will 'freak out' and just throw my stuff out in the snow, and me" and unfortunately the local rescue missions were filled. He was looking for an understanding CFS patient he could temporarily move in with and promised to back pay his rent when his disability kicked in. Again he stated "I just really need help…." and ended his message "Thank You So much"

The first response by Jennifer occurred twenty-five minutes later. Four more people responded before the night was out offering suggestions about where to stay; Salvation Army, etc. Paula even mentioned a retreat run by her uncle in Pennsylvania. Sue e-mailed someone in the area involved in social services. Others offered their street smarts in dealing with public agencies. Options were opening for Jason but something went terribly wrong and he died early the next morning. We at CFSFMExperimental still do not know the cause of his death.