Since I'm allergic to EVERYTHING (including ALL FOODS), this is the "medication food" I "eat" for nutrition: http://amzn.to/R2SHTV You can see ( http://www.youtube.com/playlist?list=PL46173213845C1C92 ) how I've gotten much healthier, no more malnutrition from allergies, normal skin and hair growth, and stronger in general with the help of this! ( http://amzn.to/R2SHTV ) I've said it before and I'll emphasize it again. How I've recovered from the depths of hopelessness is REALLY REALLY hard for many people. Not eating FOOD is hard for many of you. Choosing to use medication instead of being disciplined and avoiding things you're allergic to. That's hard for many of you. But It's only hard because you believe you have a choice. If surviving and not being in pain is truly the only thing you want, as is what I want, then the choice is obvious and simple. For me, eating food would cause me a significant amount of pain, and so would taking more medication. So if I don't have the self discipline to avoid food, I'll cause myself pain. Furthermore, I'll have to take more medication, which will cause myself more pain. The decision is actually TOO easy. It is a mindset thing. Top athletes do the same. Have a very focused diet. No, they probably don't suffer physically as much as those of us with allergies. BUT, here's the point. Their mindset is that if they do anything that'll prevent them from being the best at their sport, it is pain. Pain worse than death. And thus for them, as it is for me, there is no choice to be made. We want to live (whatever each individual's definition of that is). Elecare: http://amzn.to/R2SHTV Gastrocrom: http://www.webmd.com/drugs/drug-14269-Gastrocrom+Oral.aspx?drugid=14269&drugname=Gastrocrom+Oral Over the Counter AntiHistamines Zyrtec (cetirizine HCL): http://en.wikipedia.org/wiki/Cetirizine Pepcid (famotidine): http://en.wikipedia.org/wiki/Famotidine
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Belated Update from June 1st Utah Medical Trip. New plan/regiment including increased Cyclosporin dosage to 125mg from 100mg, starting Gastrocrom and Epiceram, and UV light treatment soon. Getting help from new doctors now here in SoCal who are working with Dr. Gleich and Dr. Leiferman in Utah. Also, more allergy blood tests done with updated allergic IgE values and some good news ;) Thanks everyone for the love and support. I'm not sure why I'm still alive...and the doctors say the same thing. Doesn't matter why-just matters that I am alive and hope I can do the best with this life I got back and somehow help those that are still suffering as I did (and am) for 26 yrs...
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http://jeffreylin.net - Utah Medical Trip health update for trip from 1.9.14 - 1.13.14. "End of the Line. Where's The Next Train?" Facebook: http://facebook.com/teamjeffrey Twitter: http://twitter.com/jeffreylin Google+: https://plus.google.com/+JeffreyLin/ Update: I'm at a difficult crossroad: take on the risk for a potential cure with Rituximab + Omalizumab (Xolair) or stare at the inevitable relapse to rotting skin, muscles, intestines, and nerves and wasting away. We've seemed to maxed out the positive benefits of the current treatments. Up to 800mg of gastrocrom since december and able to eat solid foods 80-90% of meals, leading to weight gain, now at 132lbs and holding. Never happened before. However, current treatments aren't a "cure," just buying time. But now I'm also running out of time, having been on Cyclosporine for years now. Both Doctors believe if I'm to make significant improvements it'll be with Rituximab + Omalizumab combination. Here's how this experimental "treatment" is supposed to work. My IgE proteins (that triggers allergic sensitivities) has been 22,000 and now sometimes drops to 9,000 range. Well, "normal" range is 75 to 200. There's no easy way to get it there from my stratospheric IgE numbers, so we had to get creative. IgE's, in a way, are produced by B-cells of our immune system. Rituximab, the drug we're hoping to experiment with, kills off B-cells. Therefore, we should stop IgE production from those B-cells. The DANGER is my immune system will be greatly damaged for a while. Though IgE production may be reduced, other important elements of our immune system that the B-cells produce will also decrease, leaving my body defenseless or worse, unbalancing immune system in some other way. The hope is none of that will happen, and when we kill off SOME of the B-cells and IgE is decreased to around 700, we use Omalizumab (xolair) to soak up the remaining 700 IgE count down to the 75 IgE count that's normal. This way, we are trying NOT to kill off all the B-cells and therefore won't leave my immune system completely defenseless. Won't the IgE's come back? Maybe, but recent research has shown people maintaining a normal IgE count and thus "cured" even 18 months after they started treatments. In these cases, it suggests a feedback loop that's broken. In other words, in normal IgE ranges, the B-cells IgE factories produce a certain number of IgE's everyday and stays that way. The factories check the IgE's already out there in the blood stream and sees it is enough, and only produce enough to maintain that amount. But if there are tens of thousands of IgEs in the blood stream, like me, the IgE factories interpret that as being on high alert, and keeps producing a ton more IgEs. We're hoping thats my problem, and once we reduce IgE's to a normal level, the IgE factories will reduce their production accordingly! ABOUT IGE: http://en.wikipedia.org/wiki/Immunoglobulin_E ABOUT RITUXIMAB: http://en.wikipedia.org/wiki/Rituximab Question is, is it even possible that I get rituximab through my insurance Kaiser? Rituximab is ridiculously expensive. If so, what do I need to do? Dr. G is also working other angles including proposals directly to the manufacturer and proposals to the Univeristy of Utah Hospital. CURRENT MEDICATIONS/TREATMENTS Diet - Elecare: ( http://amzn.to/1j86SGP ) Immune System/Allergy Pathway Cyclosporine (immunosuppressant): alternating 3-day cycles. 125mg, 125mg, 100mg. - Gastrocrom: 100mg 8x Daily. - Zyrtec (Certirizine): 20mg 2x Daily ( http://amzn.to/L77gGQ ) - Pepcid (Famotidine): 40mg 2x Daily ( http://amzn.to/1j877l7 ) - Doxepin: 1.5mg Daily Atopic Dermatitis Skincare - Fluocinonide - Triamcinolone - Desonide - Protopic - CeraVe ( http://amzn.to/1j87bBi ) - Vanicream ( http://amzn.to/Kk6zt6 ) - Robathol ( http://amzn.to/1m7LlxO ) - Eucerin Professional Repair ( http://amzn.to/Kk6IwF ) RESEARCH RELATED TO RITUXIMAB TREATMENTS FOR ATOPIC DERMATITIS Sequential combined therapy with omalizumab and rituximab: a new approach to severe atopic dermatitis. ( http://www.ncbi.nlm.nih.gov/pubmed/23967758 ) Rituximab in severe skin diseases: target, disease, and dose ( http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3262375/ )
Просмотров: 448 Jeffrey Lin
http://facebook.com/jeffreylintv - One of the toughest aspects of dealing with a rare disease like mine is that it's constantly changing, so even if my daily routine and medications are the same, what used to work may not continue to work. The environment (including ingredients in foods) don't stay constant either, so there are always new enemies to fight. What "healthy" people (or those who haven't faced much hardships) fail to realize is, often you can do all the "right" things and life still falls apart. Why? Because the situation changes. ================================== RARE IMMUNE DISEASE SURVIVAL PACK (Non-prescriptions only): ================================== Mask - http://amzn.to/2eaAiWs Mask Filter - http://amzn.to/2dKF66A Elecare Nutritional Powder - http://amzn.to/2eayNHv Neocate Nutritional Powder - http://amzn.to/2dT3zG2 Robathol Bath Oil - http://amzn.to/2e2th9H Vanicream Skin Cream - http://amzn.to/2eaAzIU CeraVe Moisturizing Cream - http://amzn.to/2eaARzj Cetirizine Antihistamine (Zyrtec) - http://amzn.to/2e2vxO0 Famotidine Antihistamine (Zantac) - http://amzn.to/2dKG6rf
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