Starting AP either today or tomorrow

[terri9967]

Well met with my family doc yesterday after having all my pre AP blood work done. and I will be starting AP either today or tomorrow, depending when the in home nurse calls to set it up. My doc has changed the protocol a little. Instead of doing extreme high dose i.v over 5 days he is lowering it just a little and doing it over 7 days. He does this in hopes that I wont have a severe reaction to the antibiotics. Then I will go on oral pill 3 times a week. I guess the in home health care agency is having a fit because this treatment should be done while admitted to hospital because alot of people have a reaction to this anitbiotic. But he explained I can not be put into a hospital enviroment due to low immune system. He went over all the side effects and of course the herxing.....He told me to imagine my worse flare times 100 and that COULD be herxing for me but that its a good sign as it means treatment is doing what it should. And also that in some cases people 5 to 7 years down the road end up with chemically enduced lupus. But he said "I dont have anything to lose, if I do not try AP I wont be here in 5 years" I said well.....then I will deal with that in 5 years if it happens but atleast I will be here in 5 years. He also told me that this treatment basically pisses off my insides and thats why we herx" I told him that my insides have been pissed off for 4 years now and that its time for my insides to just take a chill pill LOL.

He also wants to me to keep a detailed journal on my progress, so I have to start a journal and begin it with all my symptoms pre AP and then do a daily entry of any changes or even if no changes. He wants to use my case and a couple other patients for a medical journal to try to open other doctors eyes to AP as a treatment for some auto immune diseases. he said that this treatment will probably not help with ALL the diseases I have but hopefully will help with the ones I have that can end my life. And we will deal with the others later.

They will put a heprin lock in so that I do not have to be stuck for the i.v everyday for 7 days as my veins are so thick it is very painful to try to insert a needle.

I am so excited to get to try this treatment!!!!!

I will let ya know when I have my first i.v and how it goes.

Hugsssss
Terri

[jeffn]

Good luck with the new program. You may not herx at all, from what I read most SD people do not herx. I did herx some but that was nothing compared to my SD pain. I never received any IVs though, that may be different. The herx is supposed to be more of a RA thing. Again good luck.

[aajmom]

Terri, good luck to you! I am approaching my 2 year mark on AP and can honestly say it's been wonderful! The many improvements in my body have been tremendous! Most of them happened gradually, over time- so be patient. I never "herxed"- only reaction I had was dizziness to the minocycline. I've only done oral dosages- never IV. When I was starting the med. and became dizzy, I tried to stay home and not do too much. I was determined to get thru it and really wanted to keep taking the mino. Before I knew it, my body had adapted and I was fine. Since beginning the meds. my fingers have become useable again, I can now easily make fists, the skin on my body is soft again and my energy is better than it was.

My local sd doc (not the doc who prescribed the mino) did not initally believe the AP would help me- she has since changed her tune and is now a believer! I hope your doc can open some other doctors eyes to AP- it would be a wonderful thing!!

Good luck- please let us know how things are for you! -Adriane

[Cubby]

I have talked to doctors and anyone who would listen about AP. Only those who have had success with patients believe in it and it seems, that NO ONE believes those doctors!!

I had a friend on the phone last week. She is a physician assistant and her husband is a Psychiatrist. She was out here and saw me at my worst 4 years ago.

She had the nerve to say to me "are you sure you really had Scleroderma?". I said, "well, I have over 1/2 million dollars of medical bills that all say I have it!!!!!".

I have sent letters to Dr. Phil, Oprah, the DOCTORS, to try to spread the word. But, most people think we are a bunch of kooks because most mainstream doctors still say that the AP does not work!

TERRI: I never did the IV, just the Minocin pills. However, I also never herxed, so don't worry, there is a good chance you won't, but if you do, it's a good thing!!!! Let us know what is going on? By the way, could I have your doctor's name and contact info. I want to sent it to the roadback organization.

[sherion]

Oh Terri I am so happy for you!!! Be sure to keep us updated on your progress. I think it's great that your doc decided to do the AP, so many of them refuse. Good luck to you!!!!

Sherion

[terri9967]

Hi Cubby

Just got the call from the in home health company and I am a bit pissed off. This is how it will go for me.....

Monday.... report to their office at 9am....they will put the heprin lock in and do the first iv treatment, then from there on out I am on my OWN. I have to my own i.v infusions for 7 days!!!

minocycline

monday and tuesday..... 300mg i.v twice a day
Wed and Thurs.... 600mg i.v twice a day
Frid, Sat and Sund 900mg i.v twice a day.

Then on Mondays, Wed, and Thursdays I take the pill form (not sure what the mg will be yet)

Then in 3 months if the i.v infusion seems to be working I will do the 7 day course of i.v again.

He changed the protocol from 5 days to 7 days so that I have a less chance of having a severe reaction to the anti biotic.

As for giving his info to the RBF I would like to wait till my 2 week check up and ask him first. He and I talked a long time and he is overwhelmed with the amount of people that are calling already for the AP. Which he will be fine with except he is the type of doctor that doesn't want to go full on with this till he has educated himself 110%. He has been talking to Dr Sennot in Iowa and has the book from Dr Brown and all the info that I printed out from the RBF and he is doing ALL his homework before he starts taking on new patients for this. Right now he is doing the AP for his own patients while he gets totally comfortable with this treatment.

So....I am a bit worried about doing this on my own, not the actual doing the i.v bag, but not having a nurse atleast check in here twice a day to make sure I am not having any problems of heaven forbid a severe reaction to the medicine. But its a risk I am will to take to find some relief from all this.

I will keep you all posted how it goes on Monday. Thankyou so much for all the great support

Hugssss
Terri

[christine10]

Hi Terrie;
I never had ino I.V.s but did have clindamycin ones.A nurse came to my house to jab me and start the I.V , when finished I removed the needle myself.Nothing to it!I did not find the I.V s did anything more than the pills did however.
I did not herx with mino or clindamycin but when the doc. added zithromax a few years later I sure did.OUFFFF!
When your sjin starts to soften you will likely have some very wierd sensations so don't go and panic like I did.It felt like zillions of tiny schocks and bugs crawling around under my skin.YIKES At the time I thought that the SD was coming back big time but it was just the healing.Just make sure you take a good probiotic at 3 times the recomended dose.You know you already have yeast issues a they are part of the SD package and you sure do not want it to get worse as it is near impossible to get rid of it.

[Cubby]

TERRI: I am still confused. You have do do your own IV infusions?? How would you find a vein and get it in correctly? I would talk more extensively to them when you go in Monday.

[terri9967]

Cubby.... No they will be inserting a heprin lock i.v then will show me how to hook the i.v bag up on my own.

[grammie]

Glad you are able to go this route. Keep us posted, ok. grammie