hi Zoe;
Thank you so much for your interest; yes; I have basically been just surviving and doing the very best i can not knowing why i always felt weird on all insulins- and being told that I AM BASICALLY an alien in my reactions.
You are wise to pick up on my mention of CFS. I have met people with environmental illness and even went to a clinic in Texas 3 yrs ago looking for a way to survive when the pork insulin was removed from the market. It is a very complicated illness and I;m nnt sure if I fit into that category; very sunjective; very unusual; and some of my symptoms fit; like my overreactions to meds but i don’t fit in other categores. Anyway they offered crazy treatments that I could not possibly live with and i felt did not know how to treat diabetes especially. The doc was too old to understand the details of my situation and I left there very disappointed.
As far as Lyme disease is concerned; I did grow up in Ct; where Lyme is now prevalent; but have been tested 3 or 4 times in my life and always negative. I think with Lyme joint pain is prevalent and I do not really experience that. I saw a Lyme specialist a few years back and she insisted I did not have it. So i still think the swollen glands are something connected to diabetes or insulin but have been worked up bllood wise many times and it just gets left as undiagnosable or CFS is when there is no other explanation found.
Thank you for your help- really good suggestions- I appreciate all thoughts and help I can get. I think I fall in between the cracks of diagnosisi bu;t there must be others out there like me.
I have switched to your discussion page for posting. I take Avapro (ace inhibitor–also protects kidneys in diabetics), amlodipine (calcium channel blocker) and clonidine (alpha receptor stimulant) for blood pressure. I have to split the amlodipine dose to 3 times per day and the clonidine to 4 times per day. Both make me too tired to drive or anything else if I take them all at once. I will not take beta blockers (though my cardiologist had tried to prescribe them) because these drugs can block the symptoms of low blood sugar (like shaking, sweating, anxiety). I have frequent lows, some as low as 25 so I don’t need symptoms masked. I started with Avapro, then amlodipine, then clonidine was added when my BP was up around 175/95 for a while. These do work–my BP is often normal now.
I, too, often felt as if my heart rate were very high. However, when I would actually check it using my BP monitor, it was fine. I wuold wake up feeling as if my heart was racing at 2 am, but it’s not. I don’t know why I perserve it as such. I am glad I measured it because that’s why my cardiologist kept giving me the beta blockers.
I do have a slight mitral valve prolapse. My heart rate was always around 90 before the BP meds. It’s down to 75-85 now.
I get red welts only at the injection site. It swells, feels very hard (and sore!) and is hot to touch. It may last for over 24 at times.
I was on pork/beef insulin and had no problem changing. I take NPH and was on “Regular” until humalog came out. The switch worked fine. I was on Lente for a while but the overlapping durations caused a mess, so I went back to NPH.
I thought of the same thing you said about a transplant–what would the immunosuppressant drugs do to me? I have another condition for which those can be prescribed, but I really don’t want to go there. I have avoided prednisone for the same reason. It’s very hard on diabetics.
I do not take any supplements associated with reducing allergies, etc. I am hypersensitive even to some naturals. I do take Valerian for leg twitches and thrashing about at night. I’m a mobile sleeper!
Allergy shots for desensitization kept landing me in the ER struggling to breathe. I gave that up.
I actually have a friend who has more allergies and more violent reactions than I do. She ended up in the ER for anaphalaxis after taking Reglan. (She’d not diabetic, but is epileptic.) Another friend I had was the same way–allergic to medications, aloe, lanoline, etc. So I have been around people who have the same experiences with the allergies in general.
I find that if I can avoid as many allergens as possible, I can keep the reactions less severe (there’s a threshold for reactions that once crossed, many things set you off). If the allergies get out of hand, I explosive outbursts of temper (up to throwing things, etc) and get very anxious. When this happens, I try to get away from the allergens for a while. While you obviously cannot get away from insulin, if you can identify other triggers and avoid some of those, your reaction to the insulin may be more tolerable. Allergens are cumulative–the more you are in, the worse it gets.
Insulin allergies are rare, but there are studies out there and places that do research on this. I was surprised how many studies I could find on the internet. Many mention Aspert insulin as a possible solution, but then others say no! Don’t you love research?!
Guess that’s enough for now. Don’t want to ramble too much!
Nearing 40 yrs;
thanks for your response again. I; in an earlier post explained that I went to an Environmental Health Center in Dallas 3 yrs ago to find an insulin that I could tolerate. The doctor has the reputation worldwide of finding treatments for rare and environmental allergies;so I got on a plane 1st time in 30 yrs to try to save my life. Disappointingly; the doctor is advanced in age and I found did not know too much about insulin in general; just about a few preservative and I was there one week getting tested for preservatives. In the end i left without any real treatment except for an insane schedule of taking antigens they make there from your insulin. It was something I could not live with; it was really insane and non helpful in the real world.
I find it curious that you also have mitral valve prolapse; I have read that it contributes to all kinds of weird conditions and sensitivities; and in my case; even though it’s mild; i think that its true for me in some capacity. I also called Joslin Center and New England Deaconness Hospital and spoke to top endo who said I couldn’t posibly be allergic to all insulins and was a total idiot; he heads up some of the research; I believe and was so dismissive to me; it was truly an insult.not the first time I’ve been dealt with like that; but fortunately not too often, either, Uusally docs are respectful but completely ignorant; like you say; we have to figure it out for ourselves.Also was wondering how one finds the studies you mentioned on insulin allergy on the internet? Could you explain how you found them? Thanks so much
These are three of the sites I found. You may be familar with some of these–Don’t know what you have researched.
http://onlinelibrary.wiley.com/doi/10.1111/j.1398-9995.2007.01567.x/full
http://www.clinicalmolecularallergy.com/content/3/1/16
http://care.diabetesjournals.org/content/26/10/2961.full
This is a children’s link, but list current research: http://www.childrenwithdiabetes.com/d_0j_100.htm
I just type in variations on allergy to insulin and see where it goes. It generally takes multiple variations. If you can limit your search to .edu it gives more scholarly information.
I was surprised that Joslin Center does not even consider this problem. Their website has no information at all on this. I thought they were a top diabetes center. It may be that an allergist would be more help.
I did not find any current studies that are open, but will watch for some. Most things say 1% of diabetics have this allergy–that’s a lot. I know there has to be an answer somewhere.
I hope you are doing better with the Benedryl. I live on the stuff. I know what the allergic fog feels like and it’s not good. We have wind and dust all over today, which really makes me tired and cranky. It’s lousy to feel that way so much of the time. I try to keep other allergens down so I can deal better, which kind of helps.