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Zizzle wrote:My rheumy would say I'm hard-headed, over-read and borderline non-compliant, since I always argue for the least amount of medication possible and keep delaying the inevitable heavy-duty meds.
He probably would, but I would argue that you are just using good, common sense, and looking out for your long-term health.
And I definitely agree that DM is almost surely the most difficult rash to treat. But all the medical treatments only work as long as they are continued, so that makes dietary treatment vastly more health-friendly, in the long run, (IMO). (If you can ever perfect your dietary treatment).
I've also wondered about the effects of working under fluorescent lighting all day on your rash. If I spend too much time under fluorescent lighting, stuff tends to grow on my ears. That couldn't be a good sign for skin health.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'm lucky to have my own office, so I leave the lights off and use an incandescent lamp when I need it. Of course the natural light from my old windows is probably harming me too. I can't win. Need to live in a cave.
Btw, was reading about cytomegalovirus infection in tissue samples of IBDs. CMV is a herpes virus like EBV. They lie "dormant" in the central nervous system after the initial infection...maybe that's what activates the microglia?
Also, I know many people with DM and peripheral neuropathy, carpal tunnel, etc. Many see neurologists. So there is definitely a neurological component to the disease that I'm ignoring since my symptoms are mild. But I've always had tremor, sleep myoclonus, occasional restless legs, and now arm/hand issues. Just no brain issues (that I've noticed). Hmmm.
Good luck trying to find a neurologist who is qualified to actually be helpful with something such as this. Gluten-induced peripheral neuropathy has been an established fact in the medical literature for over 10 years now, but I have yet to find a neurologist who will even consider the possibility. Most seem to be mighty slow to adapt to new innovations, in my experience.
The lack of a brain connection does seem odd. Of course it could be so minor as to be insignificant, I suppose.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I don't plan to seek the help of a neurologist anytime soon. After all, LDN is supposed to fix everything! My doc did say my EBV and HHV-6 titers were "borderline" last year. I assume that means I definitely had past exposure, but we don't know if I'm in a reactivation phase. I have a friend with EBV and CMV, and she is constantly fatigued with high titers. EBV is now becoming the smoking gun in MS, so there are definitely nervous system implications for the herpes viruses.
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Did you notice the link that Pat posted about Dr. Wahls (concerning MS and diet)?
I've been following Dr. Wahls on Facebook for more than a year. Very inspiring success story. I'm starting to believe there are 2 types of people...those on the SAD diet who can get miraculous success by switching to a GF/anti-inflammatory diet, and then those of us with more sinister food/environmental sensitivities (and perhaps pathogens) that impede progress even on the right type of diet.
Of course, I keep having to tell myself I might be in a wheelchair and on oxygen (or dead) if it weren't for these herculean diet efforts. It's hard to pinpoint where you are in the "healing" journey.
I've read everything including Dr. Kaplan's theory on his book jacket and I only have one question: if LDN is supposed to cure everything, why aren't more of us on it and where are the success stories on this board from those who attempted it?
Theoretically we should all be on it.
Puzzled.
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
LDN is a cheap drug that must be compounded for use. It gets no attention from mainstream docs because there is no marketing for it, and no one willing to pay big bucks for clinical trials. There are patient groups around the world trying to raise awareness. I suspect there is professional blacklisting that may happen to docs who prescribe it, since there are not expensive clinical trials proving its value. They don't want to get in trouble for off-label use.
Also, patients cannot be on immune suppressing drugs when they start LDN, other than 10 mgs prednisone or lower. So very sick patients would take a big risk in discontiniung their meds in hopes that LDN will work. You also can't take any opiate pain killers while on LDN, so people with pain syndromes or in need of surgery might have issues with it.
Here is the largest group I'm aware of. They are very active, are producing a documentary, have a YouTube channel full of doctor and patient interviews, have a database of patient results, etc. I follow them on Facebook, but there are other Facebook groups too.
Zizzle wrote:I'm starting to believe there are 2 types of people...those on the SAD diet who can get miraculous success by switching to a GF/anti-inflammatory diet, and then those of us with more sinister food/environmental sensitivities (and perhaps pathogens) that impede progress even on the right type of diet.
I totally agree.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Monique wrote:if LDN is supposed to cure everything, why aren't more of us on it and where are the success stories on this board from those who attempted it?
Good Question. It may be better suited to other types of autoimmune type problems, but it doesn't seem to do an outstanding job for MC, unfortunately. Still, there are a few who have had some success, for example:
Unfortunately, I can find more posts by people who tried it without success, or those who felt that it helped initially, but it soon (or eventually) lost effectiveness.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thanks for all your links. I have already done tons of research on it more than 2 years ago. And you're right there is no motivation from pharmaceutical or the medical community to promote this for the obvious reasons. However, we all know about it and I think the only one that I think was on it is Kari. I haven't heard anything from her about it since she started it a while back.
My pharmacist compounds it too...and you can get it from alldaychemist.com without a prescription. The only doctors that prescribe it here in atlanta are functional med docs.
Who else has tried it on this board?
Monique
Diagnosed 2011 with LC. Currently on Low Dose Naltrexone (LDN)
Do a search for low dose naltrexone to find a list of old threads that refer to it. Beverly, for example, tried it early on, and had initial success, but it didn't last, as noted in this thread (I found out by emailing her):
Note that that thread was posted in 2009 (almost 5 years ago). The LDN stopped helping her MC, but apparently continued to help her MS, thus the reason for my comment in the previous thread.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Oops, I posted this to the wrong thread, and don't know how to delete it there...
Thanks for posting those threads Tex! I note that Linda was on a very low dose, 1.5 to 1.75 mgs. My doc thinks those doses are ineffective. He wanted me to start at 4.5 (the upper limit), but I insisted I at least start at half the dose (2.25 and work my way up). The LDN Research Trust recommends starting at 1.5 and going to 3.0 for maintenance, 4.5 if it agrees with you
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
My doc did say my EBV and HHV-6 titers were "borderline" last year. I assume that means I definitely had past exposure, but we don't know if I'm in a reactivation phase. I have a friend with EBV and CMV, and she is constantly fatigued with high titers. EBV is now becoming the smoking gun in MS, so there are definitely nervous system implications for the herpes viruses.
