Hello From The Far Past

It has been a long, long time since I visited here. I used to be a regular back in the baby days of the website. I know Sandi remembers me. Don't know how many others will. I have been in remission for 15 years now with allergy shots. I was on here daily trying to learn as much as I could about this disease and offering advice based on what I knew. I eventually found my way out of the disease but unfortunately it seemed to be a very unique treatment which only seemed to work on me and very few others - if any. Allergies I didn't even know I had at the time seemed to be kicking my immune system into overdrive and since the allergy shots have desensitized my body to the allergens, my ITP has been in remission. It got to the point where I couldn't offer much help to others since my treatment plan was so unique. Five years ago I came down with a secondary autoimmune disease - ulcerative colitis after a round of broad spectrum antibiotics. This has been taking up much of my time the last few years. This too I have learned to control on my own and I am in about a 90% remission and live a pretty much normal life. Since I'm doing much better with my ulcerative colitis I thought I'd check in here more often and try and catch up on treatments, etc.

Gary,
Thanks so much for checking in. I am pretty new so I didn't know you at the time you were diagnosed, but am thrilled to hear that things have been going well for you. How did you determine your allergies and then how did you treat them?
emily

Got diagnosed in 1990. It was in 1998 that I finally figured out that I had an ITP relapse every single fall during fall allergy season. It corresponded with a chronic sore throat that time of year which lasted for months. I didn't believe I had allergies but others would tell me I did. I brought up my thoughts with my doctors that maybe my allergies were related to my ITP. They all laughed and humored me but I finally decided to get tested by an allergist via the skin prick test on the back, which showed I had mild allergies to fall pollens and molds. Tried several different things like allergy pills and nose sprays but even though they helped out with my chronic sore throat thing, they did not help out my ITP. As luck would have it my allergist had a son who had acute ITP at one point and he actually thought it was possible that there could be an indirect relationship. I eventually decided to try allergy shots even though I didn't really think I needed them for my allergies. I knew it was a gamble that my ITP might actually get worse but thought it was worth the gamble to find out. In the beginning the allergy shots didn't do much because they start you out with an extremely low dose of allergens and work their way up. Once I was worked up the higher doses in the shots I attained remission and never looked back. I brought this up several times on the this forum and many were interested but I don't remember anyone who got the same results that I did. I have been in remission since 1999.

Hey Gary! How are you? Tal showed up today too....what's going on here? Old Timers week!

Just an FYI: Gary was one of my guides when I was first diagnosed in 1998. He showed me the ropes, taught me what he knew and convinced me not to be afraid. He used to be the Modertor before he handed that torch to me. I took my cue from Gary and a few others who gave their time and wisdom to the PDSA forum. Things have sure changed since then!

You're too kind. I did notice Tal had made a post too. I felt that I did a lot of good during my time here but with my situation being so unique and my life changing with marriage and kids, I didn't feel I could contribute much anymore so I kind of went awol. Then I came down with Ulcerative Colitis (another autoimmune disease) five years ago and I had been back on the research bandwagon all over again with that. I have succeeded (so far) in getting that to about as close to remission as you can get.

One thing I learned from having ITP was that I couldn't trust the doctors to look for the cause or the cure because they have books stating that there is no known cause and no known cure so they don't even try. While doctors have their usefullness, it only goes so far. If you really want to get better you often have to figure it out for yourself. I had a lot of ITP doctors outright lie to me in the beginning while mixing in too many false hopes at the same time.

I kind of liked it when my GI doctor basically told me right in the beginning that my new disease was going to be a lifelong struggle and told me I could find a lot of info on the internet. What kind of a doctor tells you that? A doctor who is willing to admit that overall there's not really much he can do for you and I found that very refreshing and honest. He's actually one of the most respected GI specialists in the area. Prednisone is often used as a treatment with this disease as well but my GI is against prednisone as he knows that it only works while you take it and not after tapering off and he knows the incredible amount of damage that can be done to your body by long term prednisone use. Unfortunately, with ITP there are not many alternative or natural treatments which seem to work (I guess I got lucky with the allergy shot thing).

I learned that with my new disease there are actually countless alternative and natural treatments that not only work but have legitimate scientific medical studies done on them, proving that some of them work in some individuals. I guess what I'm trying to say to everyone is don't give up and do research yourself, even if it is outside the box, like my allergy treatment plan for ITP. The doctors all laughed at me for going this route but in the end I got the last laugh. It's harder to figure out the right treatment plan if you can't figure out what is causing it in the first place, which is where I lucked out after 8 years of observations. I have fallen behind the times in ITP research but hope to update my knowledge by checking in here more than I have been. Good luck to all.

Ha, don't be so modest. You and Bill were the two primary sources of information, but I never knew what the heck Bill was talking about. It took me a while to figure out that I don't think he did either. The names back then.....Cher, Lib, Tal, Yvonne, Cris, Jeannie, Chuck, Kim. Other than you, I keep in touch with a few.

My sister has ulcerative colitis and has been pretty lucky so far. She's had about 3 flares in the past few years, but has been able to get it under control within a week or two. I'm glad that you figured out what works for you. Are you gluten free?

Nope. There are many who claim success with various diets (often diets that contradict each other) but there is really no such thing as a UC diet that works in the masses. Different things work in different people and many times diets don't work at all. Colon damage does effect what people can eat so often times when you are flaring many foods (such as gluten) will be bothersome but are not bothersome while not flaring. You do have to find out what works for you and what doesn't as some foods, such as gluten, can trigger a flare in certain people.

After a lot of observations and research I discovered I was histamine intolerant and couldn't handle high histamine foods without getting much worse. I did discover a digestive enzyme (DAO) I can take before eating higher histamine foods and now can eat them whenever I want with no problems. That was one part of me getting better. Another thing I did was pay to have a detailed DNA analysis of a my stool and this was key to me discovering another part of my problem. Doctors don't do this. After addressing these issues I have been much, much better.

I noticed in another post of yours in another thread you talked about nightshade foods. Since you brought it up, there are people who have problems with nightshades but this problem also mimmicks my histamine food intolerance thing so you could really have the histamine intolerance and not the nightshade thing at all and vice versa. Same holds true for the gluten thing. Several foods containing gluten are also higher in histamines so if you get better by eliminating gluten you might not ever realize that it was actually a histamine intolerance and not the actual gluten itself and vice versa there too.

I also saw you talked about Turmeric/Curcumin in another thread. This is one of the anti-inflammatories which has solid medical evidence behind it as actually working. In UC most people who get benefit ingest at least 2 grams of it per day, usually with a pepper additive. If anyone's ITP is related to inflammation at all this could possibly be of benefit but I guess that's for another category. It's much harder to find alternatives that work with ITP but it's important to always think outside the box.

I tried a gluten free diet for three months last year and was feeling so much better. Then I had some things happen in my life and didn't have the time to keep up with it. I keep talking about getting back to it, but still don't have the time or the energy (and it's expensive).

Nightshades are horrible for me. Huge pain increase with those (but I love tomatoes)!

Hey, do you happen to remember when you stopped being Moderator? I have no idea how long I've been doing this.

Can't remember for sure. I'm going to guess 2002.

Yes Gary I remember you. When first finding this site I soon discovered your wisdom. It helped me through many questions/concerns. I pretty well have a handle on the disorder but something always comes along and gives me a reality check. Good Luck Gary and although you are busy don't be a stranger.

Hey Christine! How are you doing?

Hi Christine! I remember you to. Glad you have been hanging in there. Make the most of your good times and know from experience that you will bounce back from the setbacks.

Gary and Sandi, I'm doing fine - once I accepted the fact I had ITP with no known specific cause. This site is great in that I feel I am not alone.I find more people are being diagnosed and during several IVIG treatments years ago met a "newbie" ITP person and was able to make her feel better by reassuring her on many things. I felt I had moved up to an "old timer" with ITP (35yrs)!!!
I have been on Nplate for 3 years and it seems to be holding things steady. Although there are quite a few times I still need the reassurance and wisdom of the people on this site.
It's a case of "If life gives you lemons, make lemonade"
Take Care.

Yep - you have certainly earned the status of 'old timer'!