Jamison Hill's Fall: Former Weightlifter Now Has Most Severe Kind of ME/CFS

[Bon Marie]

Over a $1,000 has been raised for Jamison's health car in the last 24 hours

Janet Dafoe Whitney's mother posted this:

"We are thinking of you every single day, Jamison, as we care for Whitney we include you in our thoughts of love for him. We live near OMI, so when you are here if you need a place to crash or sleep or anything we could help with, please let us know. Cort and Ryan both know how to find us. We know what you are going through, we grieve with you for what you've lost, we celebrate your amazing being, we are fighting every single day with all our might to help you and Whitney and all who suffer from this horrid disease. You are amazing, and you and Whitney are going to get better. Together with many people working on this, we WILL figure this out!!!! Ron Davis and Janet Dafoe"

Whitney, Jamison, & many others are in my daily rituals~Lifting our community through loving meditations & sending Reiki healings. I am also a patient at the OMI. They have restored my hope in finding real answers, real treatments, & ultimately a cure.

 

[Bon Marie]

I wonder about that as well but I think they're probably his best option.

Dr Kaufman, from the OMI, saved my life. As we had been working together to improve ME/CFS symptoms, I began experiencing new & strange issues; usually around meals. After collapsing in a state of anaphylactic shock form a thrip bite (small normally harmless bug), the ER room told me I was having a panic attack, gave me a zanax, then discharged me. After returning home, the site of the bite on my left arm & the left side of my face swelled up~looked like I had been in a boxing match! I shared my strange symptoms with Dr Kaufman concerning foods/digestion & he immediately put the puzzle together ~ I tested positive for Mast Cell Activation Disease. I now know how to avoid triggers, have my histamines under control & ALWAYS have emergency meds & an EpiPen with me. He continues to listen & respond with new ideas/treatments to assist me in reaching my baseline health. Grateful!

 

[fdotx]

Over a $1,000 has been raised for Jamison's health car in the last 24 hours

Janet Dafoe Whitney's mother posted this:

"We are thinking of you every single day, Jamison, as we care for Whitney we include you in our thoughts of love for him. We live near OMI, so when you are here if you need a place to crash or sleep or anything we could help with, please let us know. Cort and Ryan both know how to find us. We know what you are going through, we grieve with you for what you've lost, we celebrate your amazing being, we are fighting every single day with all our might to help you and Whitney and all who suffer from this horrid disease. You are amazing, and you and Whitney are going to get better. Together with many people working on this, we WILL figure this out!!!! Ron Davis and Janet Dafoe"

Janet you and your family are in our thoughts also. I cried watching "Forgotten

Thanx for replying to my post. I guess we have ME/CFS & "silliness" in common, because I felt for many years I could rest/pace my way out. Now I'm counting on science. In the mean time, I'm about to embark on a "location factor" journey up higher in the Calif mountains. I plan on living a "monk" style life for the next year in hopes of calming down my nervous system etc.. I have a support system in place, an old but reliable Ford van Airstream conversion, & I'm all but ready to roll. This has been planned for over a year; just waiting for enough strength to make the move.

oh wow, good luck and I hope you keep us posted!

 

[Katie]

I'm so sorry to hear of Jamison's decline.
There's something I don't understand, My health declined fairly rapidly over an 18 month period (I had been dx with FM only until then, but know I've had ME too all these years) until I was bedridden, in severe pain, fainting, so nauseous I couldn't eat solids and liquids were not much better. I was down to 82 pounds and could not get out of bed. I had to use a slipper pan and that was extremely painful moving my body to roll on the pan. Ugly and horrible time. However, I improved, I don't really know why. I'm still sick for sure but not bedridden, mostly home-bound but I do get out of the house once or twice a week. I have a lot of back pain always and am still exhausted most of the time, however 2 or 3 years ago I thought I was headed for the grave, especially if I continued to lose weight.
It's always confounded me. I think it may have had something to do with the LDN I tried, but I had been losing weight up til then anyway.
I don't get it but I'm so very thankful I didn't continue to decline. Very very frightening.

 

[bendygirl]

I am curious to know if oxygen therapy via a nasal canola (breathing) would be a good alternative to those who don't have access to ozone therapy?

 

[Cort]

I'm so sorry to hear of Jamison's decline.
There's something I don't understand, My health declined fairly rapidly over an 18 month period (I had been dx with FM only until then, but know I've had ME too all these years) until I was bedridden, in severe pain, fainting, so nauseous I couldn't eat solids and liquids were not much better. I was down to 82 pounds and could not get out of bed. I had to use a slipper pan and that was extremely painful moving my body to roll on the pan. Ugly and horrible time. However, I improved, I don't really know why. I'm still sick for sure but not bedridden, mostly home-bound but I do get out of the house once or twice a week. I have a lot of back pain always and am still exhausted most of the time, however 2 or 3 years ago I thought I was headed for the grave, especially if I continued to lose weight.
It's always confounded me. I think it may have had something to do with the LDN I tried, but I had been losing weight up til then anyway.
I don't get it but I'm so very thankful I didn't continue to decline. Very very frightening.

It's good to know that you can get better for no discernible reason. I guess it makes sense - most people got worse for no discernable reason. Turnabout is fair play

 

[Cort]

Dr Kaufman, from the OMI, saved my life. As we had been working together to improve ME/CFS symptoms, I began experiencing new & strange issues; usually around meals. After collapsing in a state of anaphylactic shock form a thrip bite (small normally harmless bug), the ER room told me I was having a panic attack, gave me a zanax, then discharged me. After returning home, the site of the bite on my left arm & the left side of my face swelled up~looked like I had been in a boxing match! I shared my strange symptoms with Dr Kaufman concerning foods/digestion & he immediately put the puzzle together ~ I tested positive for Mast Cell Activation Disease. I now know how to avoid triggers, have my histamines under control & ALWAYS have emergency meds & an EpiPen with me. He continues to listen & respond with new ideas/treatments to assist me in reaching my baseline health. Grateful!

This guy is good! I wonder how many ME/CFS doctors know about Mast Cell Activation Disease.....Instant recommendation in my book for him.

 

[Cort]

Thanx for replying to my post. I guess we have ME/CFS & "silliness" in common, because I felt for many years I could rest/pace my way out. Now I'm counting on science. In the mean time, I'm about to embark on a "location factor" journey up higher in the Calif mountains. I plan on living a "monk" style life for the next year in hopes of calming down my nervous system etc.. I have a support system in place, an old but reliable Ford van Airstream conversion, & I'm all but ready to roll. This has been planned for over a year; just waiting for enough strength to make the move.

I love it Bon Marie - where are you going?

I've been on the road for most of the past two years. Am in the process of buying an extended GMC van which will give me and the dogs more room. Building a home in it! Nature will calm your nervous system down....

 

[Bon Marie]

I love it Bon Marie - where are you going?

I've been on the road for most of the past two years. Am in the process of buying an extended GMC van which will give me and the dogs more room. Building a home in it! Nature will calm your nervous system down....

Luv my van~I'm sure you & your canine companions will enjoy the extra space. My ultimate goal is to "help" build a tiny house. Iv'e been a huge fan of the idea for years. (Lived large~ready to adapt, & move forward) I'm already in the Calif. foothills, just planning on heading further up the mountain in Nevada County. Because of the Mast Cell, I have to be somewhat close to a medical facility & I am still a patient of the OMI. I LUV that you have been on the road. If able to travel to find the best possible location, I would do so. Hoping this will be my golden spot for awhile.

 

[Seanko]

Remember reading Jamison's story when researching safe levels of exercise last year. It is immensely frustrating how small triggers can spark such awful relapses.

One strange thing abut ME/CFS is that so many people involved in sport catch the disease. On Twitter in a small sample, I have met 4 young people who were ballet dancers and they trained to a high level too.

There is evidence that the training of marathon runners & triathletes damages the immune system

Training for Endurance Sports and Your Immune System

 

[Bon Marie]

Remember reading Jamison's story when researching safe levels of exercise last year. It is immensely frustrating how small triggers can spark such awful relapses.

One strange thing abut ME/CFS is that so many people involved in sport catch the disease. On Twitter in a small sample, I have met 4 young people who were ballet dancers and they trained to a high level too.

There is evidence that the training of marathon runners & triathletes damages the immune system

Training for Endurance Sports and Your Immune System

Yikes~thanx for sharing this info. I began intense training at an early age (8), weighed about 80lb my Freshman year of high school, contracted pneumonia & dropped to less than 70 lbs. My Jr year I was stricken with a severe case of Mono. Only times like these, when impossible to attend classes, would I miss.

 

[Bon Marie]

Yikes~thanx for sharing this info. I began intense training at an early age (8), weighed about 80lb my Freshman year of high school, contracted pneumonia & dropped to less than 70 lbs. My Jr year I was stricken with a severe case of Mono. Only times like these, when impossible to attend classes, would I miss.

 

[Robert Christ]

Thanx for replying to my post. I guess we have ME/CFS & "silliness" in common, because I felt for many years I could rest/pace my way out. Now I'm counting on science. In the mean time, I'm about to embark on a "location factor" journey up higher in the Calif mountains. I plan on living a "monk" style life for the next year in hopes of calming down my nervous system etc.. I have a support system in place, an old but reliable Ford van Airstream conversion, & I'm all but ready to roll. This has been planned for over a year; just waiting for enough strength to make the move.

I've been fortunate enough to have available to me a large metal building in the south central NM desert Near truth or consequences. Wasn't the panacea I thought it might be but I think it's better than any other living situation I have tried. There are just so many factors you take into account it's hard to say with any degree of certitude.

And my opinion has changed over time. So many things I say today about my experiences might contradict with things I have said in the past and probably will contradict many things I say in the future again. Probably why any good researcher would give so little credibility to testimonials from people like me and refer to them as antidote. Like for instance once I said the Appalachian mountains in NC I stayed at in a camper were untenable. Than I said they were not much different than NM. Now I think again they are untenable again.

Do believe environment and especially mold plays a huge role in the degree of my symptoms. But I believe it is an extremely complicated relationship. For instance just moving anywhere even a very bad place short term will many times but not always make me feel better. I call this the honeymoon effect when it does. Experienced it many times. But after time it wears off and you can actually do worse. Or even much much worse. But the effects of environment are so profound I know they are a key factor at least for me.

Than you have to add in all the other factors. Like diet and sleep. Even the water you drink. When I think of how incredibly difficult this illness is I think I should just give up. But I am 56 now got 20 years under my belt don't have the type of financial worries many have. I probably only got 20 years left to go. Going to try to stick it out unless it gets much worse than I might not. Don't have the stomach for much more than I have already been dealt. And I suspect it's a much easier hand than many.

 

[Who Me?]

@Robert Christ @Cort paragraphs please.

 

[fdotx]

I love it Bon Marie - where are you going?

I've been on the road for most of the past two years. Am in the process of buying an extended GMC van which will give me and the dogs more room. Building a home in it! Nature will calm your nervous system down....

I think you 2 have the right idea - just read an article on the health benefits of being in nature and a van simplifies things in many ways....

 

[fdotx]

I've been fortunate enough to have available to me a large metal building in the south central NM desert Near truth or consequences. Wasn't the panacea I thought it might be but I think it's better than any other living situation I have tried. There are just so many factors you take into account it's hard to say with any degree of certitude.

And my opinion has changed over time. So many things I say today about my experiences might contradict with things I have said in the past and probably will contradict many things I say in the future again. Probably why any good researcher would give so little credibility to testimonials from people like me and refer to them as antidote. Like for instance once I said the Appalachian mountains in NC I stayed at in a camper were untenable. Than I said they were not much different than NM. Now I think again they are untenable again.

Do believe environment and especially mold plays a huge role in the degree of my symptoms. But I believe it is an extremely complicated relationship. For instance just moving anywhere even a very bad place short term will many times but not always make me feel better. I call this the honeymoon effect when it does. Experienced it many times. But after time it wears off and you can actually do worse. Or even much much worse. But the effects of environment are so profound I know they are a key factor at least for me.

Than you have to add in all the other factors. Like diet and sleep. Even the water you drink. When I think of how incredibly difficult this illness is I think I should just give up. But I am 56 now got 20 years under my belt don't have the type of financial worries many have. I probably only got 20 years left to go. Going to try to stick it out unless it gets much worse than I might not. Don't have the stomach for much more than I have already been dealt. And I suspect it's a much easier hand than many.

You make a lot of good points. Hang in there Robert!

 

[Cort]

Luv my van~I'm sure you & your canine companions will enjoy the extra space. My ultimate goal is to "help" build a tiny house. Iv'e been a huge fan of the idea for years. (Lived large~ready to adapt, & move forward) I'm already in the Calif. foothills, just planning on heading further up the mountain in Nevada County. Because of the Mast Cell, I have to be somewhat close to a medical facility & I am still a patient of the OMI. I LUV that you have been on the road. If able to travel to find the best possible location, I would do so. Hoping this will be my golden spot for awhile.

I hope so too. Good luck and I hope you get well enough to hit the road at some point. The West is full of fantastic scenery and there are so many places to just pull over and camp.

 

[Cort]

Remember reading Jamison's story when researching safe levels of exercise last year. It is immensely frustrating how small triggers can spark such awful relapses.

One strange thing abut ME/CFS is that so many people involved in sport catch the disease. On Twitter in a small sample, I have met 4 young people who were ballet dancers and they trained to a high level too.

There is evidence that the training of marathon runners & triathletes damages the immune system

Training for Endurance Sports and Your Immune System

I have found likewise....quite a few athletes...

 

[Cort]

I think you 2 have the right idea - just read an article on the health benefits of being in nature and a van simplifies things in many ways....

It certainly does. I highly recommend trying it if you can. Maybe I'll see on the road one day

 

[fdotx]

We should sta

It certainly does. I highly recommend trying it if you can. Maybe I'll see on the road one day

It'd be neat to start our own little commune of tents, vans, RV's and tiny houses - followed by a reality show!