How many of you have had to go through desensitization?

[JustDucky]

Hi all...just wondering for those who have gone through this with drugs that they were allergic to, what it entails? I ask because my last culture grew out high colonies of B. cepacia despite aggressive IV therapy and found out that it was resistant to everything but bactrim and Cipro, both of which I am very allergic too. My doc wants to send me to my CF center to see an immunologist to admit me to their ICU and desensitize me. What should I expect? Have any of you had adverse reactions to desensitization? And more importantly, did it work??? I just want to know, I have read stuff on the internet, but I like to ask people about their experiences with this. I am at my last resort to treating this bug, to at least get the colonies down....I am on my 3rd week of IV's at home, I would hate to see all of that treatment not do any good.
I would appreciate any comments.
Hugs, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[EnergyGal]

I heard the doctors can do this for the patient but never experienced this myself. It sounds like a great procedure.

I know that energically there are easier ways to do this. In that book Energy Medicine they tell you how to clear allergens from your bodies. I have done this myself when I thought my medicine was bothering me and it worked.

The way it is described in the book is rather weird but I had a professional use a similar technique and it worked every single time. Except with the book's method, I do not pay a hefty fee.

I think it is a great opportunity to have yourself desenitized. Sounds like you have a wonderful doctor and she or he would not put you through something that would harm you.

I am interested in learning how they do this procedure. I think it would be painless if anything.

You are in my thoughts

 

[letsrockcfem]

Jenn,
I get desensitized everytime I go onto IV meds and even oral Cipro. So...when I get it done I do it in a regular hospital room (except once a new doc made me go to the ICU)...there are 12'ish doses. The first dose contains barely any of the med and each dose increases the amount of medicine. This is all delivered through an IV of course. Usually it takes 4-6 hours and each dose is ran over 20 minutes. The last dose is the full dose that you will be getting for the full course. They will probably hook you up to monitors to check your pulse, Oxygen sats, check your blood pressure and temp between doses. This is to see if you are having any sort of reaction.

I haven't had any problems during the procedure. My symptoms usually happen 7+ days into the course.
Let me know if you have any questions!
em

 

[anonymous]

My husband had to do desensitization. (Since you have cepacia and are becoming resistant, I'm betting they've sent your cultures for synergy testing, to Columbia and Ottawa). He was allergic to meropenem (he got a very hot rash). He was desensitized twice. Had to go through it in the ICU. Both times he still got a rash (they said he was the first person to do this, but I don't think desensitization is still that common, and if the web stats are right, doesn't always work). The first time they decided the rash was from the hospital laundry (!) and the second time they decided it was because they added cipro quickly, so it must be from cipro (he did actually have a similar reaction when he was taking cipro before, but he was on other meds as well, and convinced the dr. to try him on it again and he was fine). To me, he still got the same reaction. At any rate, no medical person was willing to take the risk of shock (and it is so time consuming, he had his very own ICU nurse). We did however, learn to work the system better, so the second time, he was admitted and discharged straight to/from the ICU (thanks to the help of our awesome NP). After that, since he was listed for tx, his cf dr. and tx dr. decided to keep him on a continued ('maintenance') dose of meropenem until tx.

If there's ever anything we can help you with, just email us!

Take care,

Jan (wife to Greg, 46 cf'er w/cepacia, tx'd 10-31-05 at Methodist, Indianapolis)
www.standinginthegap4greg.org

 

[JustDucky]

Thank you for your response...Jan, I am worried I wil be like your husband. My allergist in my hometown won't even touch me with a ten foot pole. I am still waiting on the immunologist in Albany to see what the next step is. I am allergic to 8 antibiotics...Cipro, Levaquin, Bactrim, macrodantin, Merrem, Vancomycin, Oxacillin and another one that I am blank on. The cepacia is sensitive to both Bactrim and Cipro right now, that's it. I believe my doc sent my last sample out for synergy testing to see which ones will do the best job. With Cipro, I have anaphylactic reactions...(same with Levaquin), the others are "delayed" reactions with hives and severe itching usually a week into the treatment. The poor docs are frustrated, as am I. I just wish my immune system wasn't so sensitive (I have 15 allergies in all, 8 of course are the antibiotics). I have autoimmune disease as well (collagen vasc. disease, in the same lines as lupus, RA..docs can't pin it down so they call it collagen vasc. disease) so my immune system is already hyper, it even doesn't like my own body!!! Because I am on a vent, I will be in the ICU, also because of my very sensitive immune system. I just hope and pray it works...something has gotta. Many hugs to all, Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">