June 15, 1998

I've just come back from my doctors appointment. I didn't have a treatment today. I had decided to postpone treatment. (I'd thought very long on this.) But in talking with Dr. Pomeroy, I will be stopping the 20mg mitoxantrone treatment till I can get hold of immunoglobulin. I don't want to reach MAXIMUM dosage with mitoxantrone without having immunoglobulin. Immunoglobulin is a MUST.

I will be having the IV Port( arrangements are scheduled for June 22nd) put in to continue using 1gm Solumedrol (steroid) once a month and possibly 5mg mitoxantrone weekly. With the Port, it will be easy on my veins. I know that adds up to 20mg monthly but at a slower spread out pace.

I say "Possibly", because I will stop using mitoxantrone IF my improvements stay as slowly as they have been. I think introducing immunoglobulin would make improvements happen more noticeably. Reading, talking with Dr. Pomeroy and Dave has convinced me.

When I say"slowly" that is Dr. Pomeroy more so than I. I told him that noticeable improvements to him probably won't start showing up till about 6 months to a year. Improvements to me are there, not as fast as I would like but improvements are happening. Considering the length of time I've been without moving, my improvement are Great but subtle. I can feel them inside more so than running outside!

The story I have for the reason why there's none available is that when Immunoglobulin was approved they found so many uses for it that they couldn't keep up production. And with having to change the (for lack of a better word) "Recipe" (which was supposed to have been ready April, 98) there's none (supposedly) to be found for "Clinical" use.

They discovered that this is such a useful drug that they ran out. BUT, they have NOT run out of it for research! They're doing research for the future not taking care of the PRESENT.(Which is fine to a point) there should be room for both.

I made contact with Biodesign International (Maine, USA) THEY (one of many) HAVE IT! Their response to me was: "But not for clinical or diagnostic use"."For research use only"!(email response at bottom of page). I telephoned them, hoping for information on another manufacturer but they had none. She did tell me of Lin Scotts Directory, they list ALL immunological and biological studies being done around the world. ( I found it by entering < Lin Scott >. This is a quote from that website"The products listed are available from more than 1800 different suppliers and distributors all over the world.")

I understand the need for research,(obviously, I would have never started this treatment otherwise.) I don't understand how they can do studies with an approved drug and not have that drug for ILLNESSES NOW. I'm not talking about mine, I'm talking about people with cancers... NOW... and other diseases that immunoglobulins have been approved for and PROVEN EFFECTIVE. There has to be room for BOTH. When I go into the IV Room for my treatment of 20 minutes and see others that will be in there for hours, with smiles on their faces, exhaustion, sadness, blank eyes and HOPE... ...WHERE'S THE LOGIC!...Some are doing a treatment that would be better served if they had immunoglobulin but they can't get it because it's being used for research! ... They're being told the same as I, "It's on back order"...That's true... but it's HERE!

I'm angry, depressed, disgusted and get a heavy feeling of defeat with finding this out. "A life without hope is a terrible existence."(You can quote me!)

It taken 2 years (2 years with a body that can hardly move) to get a doctor to finally listen and start this treatment. We begin, only to find out that the complete treatment can't be done because there's no Immunoglobulin EXCEPT for Research. (and there's a LOT of that going around!) So... what do I have going for me? My plans are these... I'll continue with Solumedrol monthly.(possibly 5mg mitoxantrone weekly). Begin using the TENS unit when it arrives. (speediness is a not Medi-Cal feature!) Exercise to stretch and buildup my body. Write my Congress Representative,in this case Barbara Boxer. (She's the one that arranged for me to get the research papers that finally got things rolling.) Have an ELISA food allergy test, (they test for 190 foods) and try to stay UP (even though someone is having a "Field day" with me!) and see how I can get immunoglobulin.

I have a request. Would you write your Representatives and ask... WHAT'S GOING ON!... that's the bottom line to this. What's going on that there's people suffering NOW. If they've had to change "Recipes", what are they doing the studies with??... old stuff... that's obsolete! If that's the case than those studies aren't worth much. If these studies are valid than the immunoglobulins that are being used are valid as well.

At the moment my next treatment is up in the air, until I have the Port put in.

Here's the letter from Biodesign International... The salutation is to Dr. Bettencourt... that's her mistake, not my inference.

6/12/98

Dear Dr. Bettencourt:

Thank you for your recent e-mail. BIODESIGN International manufactures various types of immunoglobulins, as well as antibodies to immunoglobulins, among other immunological reagents for research use only. Are you looking for a specific type of immunoglobulin or antibody? Let me know your specific interests, and I will be happy to fax you some information on our products. Please bear in mind that our products are not for clinical or diagnostic use. If you are interested, please send us your address, and we will send you our 1998-99 catalog.

If you have further questions, please do not hesitate to contact me. My telephone number is 207-985-1944, and I am at extension 113. Also, our fax number is 207-985-6322. I look forward to hearing from you soon.

Kind Regards,

Daria J. Blake

Customer Service Representative

BIODESIGN International