Need urgent medical help for boyfriend

  1. You have chosen to ignore posts from JPcoffee. Show JPcoffee's posts

    Need urgent medical help for boyfriend

    My boyfriend is in some SERIOUS need of medical help and doesn't know where to turn.  For 15 years he has suffered from severe chronic pain (NOT fibromyalgia, it has been ruled out) and has not been able to get a single diagnosis.  PCPs have been unable and unwilling to help, as it is way out of their area of expertise.  He's been to several hospitals in his native state, has been to MGH and Lahey Clinic, and no help at all.  He is out of options and out of energy.  His parents and I tried reaching out to the media recently to try to get his story told because it is such an  unknown, undiagnosed and mysterious illness that is plaguing him.  He can barely sit or stand for prolonged periods.  Everything that people like us take for granted -- going for a short walk, sitting on the couch comfortably to watch tv, cooking a meal at the stove -- are all an ordeal for my boyfriend, as he experiences such pain during and after each activity.  Well, we got little to no response from the media.  I even sent a message to Suzanne Koven who writes for BDC and got a short and unhelpful response: "I'm sorry about your boyfriend's illness.  I'm currently not taking any new patients.  Maybe your boyfriend should get a new PCP."  :-(

    My question/plea is this:  does ANYONE here know how to communicate with or reach the media to get exposure for this sort of thing?  This is not to get attention for vanity's sake, but to get help for real medical attention!  I thought of trying to contact a PR firm, but didn't realize they only seem to work with corporations/businesses/etc.

    Feeling stressed.  Hope someone here can offer some useful advice.  Thank you...
  2. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Need urgent medical help for boyfriend

    JP, this sounds very much like what my husband had gone through his whole life before he met me and saw my aunt who has been a well respected nutritionist and chiropractor for over 30 years with a practice (in Pennsylvania, unfortunately for us) that serves people in his boat very well.  He's improved ddramatically since she saw him and told him NO MODIFIED grains and NO SUGAR.

    He, too, had to have severe arthritis and fibromyalgia (sp?) ruled out, and no medical doctor he's seens knew where to go next.  It was hopeless as far as they were concerned. so that makes me think your boyfriend might be having the same trouble.

    Watch "The Future of Food" on Netflix if you doubt.  Your boyfriend sounds like someone who is very sensitive to genetically modfied food, and the worst for inflammation is corn and wheat.  And, sugar actually incapacitates my husband.

    I cook with organic spelt (Arrowhead brand that I order from Amazon but is also sold at Whole Foods), and we use stevia extract (droppers, not powder) for any sweetening.  But, if he "cheats" and has something he shouldn't, he can barely move for 3 days.

    Your boyfriend might feel totally alone because of the treatment, or lack thereof, he's gotten from the medical community.  They are hopelessly behind the times on the reaction some people have to these changes to the food supply.  

    Of course, I have no idea if that's really what's going on, but it sounds so similar that I had to try.  Please watch that video and do an experiment.  Have him cut out the big ones, wheat (especially white flour), corn, and refined white sugar.  It takes about a month (after the holidays) for DH to come out of it so be diligent and patient with your try.

    Best wishes,

    P.S.  If you want to talk further about this, please contact me at kargiverbdc at gmail dot com.
  3. You have chosen to ignore posts from dog-lady. Show dog-lady's posts

    Re: Need urgent medical help for boyfriend

    I don't know what the criteria is to get on the Dr Phil Show...but that would certainly give you exposure.
  4. You have chosen to ignore posts from JPcoffee. Show JPcoffee's posts

    Re: Need urgent medical help for boyfriend

    Thank you, kargiver & dog-lady.  I appreciate both your responses. 

    Kargiver, my boyfriend has also been told no sugar or wheats but changing his diet hasn't helped one bit. :-(  He is already trying to maintain a healthy and organic diet, but to little avail.  I will keep that documentary you mentioned in mind.  Thank you.

    Dog-lady, thanks so much for the link!  I will check it out. :-)
  5. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Need urgent medical help for boyfriend

    My husband said he tried it, but really didn't.  He thought, "Oh, this little something or other won't make a difference."  When he came clean and REALLY did it, it worked after about a month of being totally off genetically modified grains and all processed sugar.  To rule it out, I think your bf would benefit from going with simply all organic vegetarian for one month.  An expensive, pain the butt month.  If after that (and he REALLY does it) there is no change, I'd be more willing to concede that grain and sugar is not the root cause.  It can't hurt, although, it will be expensive.

    There is one total body cleanse I can recommend (it is NOT anything like the kits you can buy off the shelf anywhere no matter what those claim to be or do), but it is by prescription only.  Chiropractors and other natural health professionals can order it for you and will monitor your progress for the 3 weeks it takes to do it.  My aunt uses it in her practice, but she will not give it to anyone she cannot see because it can have some dramatic effects that can need her to make changes along the treatment path.  It's made by Standard Process, and while my husband is doing it and as long as he keeps away from his trigger foods afterwards, he's the best he's ever been in his life, nearly pain free, because all the things that are causing his inflammation are completely out of his system, and as long as he keeps it that way he's dramatically better (but when he backslides just for one little treat, he feels it badly).

    Call natural health professionals in your area and find one who will order this for him:
    Standard Process Purification (read the PDF link under "Literature")

    ETA:  As far as what he's done so far with the dietary changes, he has to do it 100%, no slips whatsoever, not that one piece of office candy, one slice here and there of pizza, NOTHING.  Because IF that is the cause, he's not letting his body completely detox from the effects of the white flour and sugar before he sneaks another treat.  He'll never know that way - that was exactly what my husband was doing for months and said, "It's not helping." He wasn't able to assign a clear cause and effect to the while flour and sugar until he cut it all out, no slips, for a long time and then had some.  Bang, he was down as if he'd been shot.
  6. You have chosen to ignore posts from dog-lady. Show dog-lady's posts

    Re: Need urgent medical help for boyfriend

    How about the Dr Oz Show?    If you could get on one of these shows, at the least you'd get the attention of a specialist.                             Have psychiatric illnesses been ruled out,  as Major Depression and Conversion Disorder (among others) can manifest as chronic pain and fatigue.
  7. You have chosen to ignore posts from Shortylicious. Show Shortylicious's posts

    Re: Need urgent medical help for boyfriend

    Hey JP
    I suffered from very similar conditions as your boyfriend and have some personal experiences to share. First, I had to be really persistent in finding a doctor that would listen and work with me to get positive results.  I went through several PCPs and while it was extremely frustrating and a bit humiliating, in the end, it was very worth it to find a doctor who acts as a trusted partner. Ask friends and family for referrals and if you've exhausted all those avenues, try some online review sites. I ended up asking my pharmacist and she gave me a great referral- the doctor I now have today. Additionally, I do practice 'alternative therapies' including diet, physical therapy, cognitive therapy and herbal remedies. It's been a long road, but I am nearly pain free today. I do experience pain, but it is not near the incapaciting pain I used to have.  It's also a lot of work to maintain but again, so worth it in the end. Good luck! 
  8. You have chosen to ignore posts from kargiver. Show kargiver's posts

    Re: Need urgent medical help for boyfriend

    Shorty, so glad you persisted and have the reward of good health to show for it.  Like you said, it is very hard to accomodate DH's condition, actually; it takes commitment.  I order a lot of ingredients online to bake and cook with.  (Just recently, xantham gum to make dairy-free sugar-free frozen treats in my new ice cream maker.)   It's expensive and time consuming, but it improves his quality of life (and our life together) so much that I see it as imperative.  

    Keep up the great work!