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My bad. I had an IV lock with saline flush. No heparin ever. I guess I thought the actual “device” was called a heplock. Sorry for any confusion.
hi everyone,
I just started the AP protocol yesterday and I'm glad to read that it is normal to feel worse before you feel better, because I feel awful! I am a novice at this treatment and in this discussion, but as someone who is the same size, I would advise against such intense treatment unless you have nothing to do in between but lie in bed and stare out the window. Isn't the point of this particular AP that it is gradual? I am looking forward to learning from your experiences and sharing anything I learn in the process,
Jody
Thanks for the cautionary words. However, in my case I'd rather get as much as I can out of the two weeks I have without my kids. They will be at camp far away and I will be able to feel awful if I have to while I get the IVs. Hopefully it won't be too bad. Once they get back, I need to be Mom again and I'd love to have something significant under my belt by then.
I have been taking Low Dose Naltrexone (LDN) since December and believe that has already caused my immune system to begin working on the bacteria. I've been having flares off and on (mostly on) so I'm already feeling it. Hopefully the LDN will have helped me make some headway and I won't be starting from scratch when I do the IVs. I'm also doing hyperbaric oxygen treatments this week in preparation for the IVs, hoping that these will prime my system and begin the bacteria-kill in advance.
Not sure what else I can do but hope and pray this turns out ok! I have to start somewhere, and my doc says Dr. S told him that people usually feel a lot better by the end of the week of IVs. Has anyone here had that experience? Or a different one?
Can someone tell me, do you continue taking NSAIDs during the IV treatment? Also, didn't I read somewhere that Benadryl can help if the herxing is bad from the AP?
[user=324]jfr[/user] wrote:
I have to start somewhere, and my doc says Dr. S told him that people usually feel a lot better by the end of the week of IVs. Has anyone here had that experience? Or a different one?
When I was there I was blown away at the difference in the RA people from the beginning of the week to the end—-what a transformation! SD results more unpredictable.
Sorry for the confusion. I had heplock in Ida Grove. I thought they were called the same.
By the way, Kim told me this tip, drink enough water before the IV. This helped to open up my veins.
I felt a lot better after 5 days IV. I could breath easier. My lung was a major concern at that time.JB
I get my 5th treatment this morning……. I am already feeling some major differences. I do hope it lasts! Last night was the first night in forever that I didn't sweat all night long and then wake up this am freezing so much that I couldnt warm up. I have so much less pain and stiffness. It's really amazing!
[user=420]kat[/user] wrote:
Last night was the first night in forever that I didn't sweat all night long and then wake up this am freezing so much that I couldnt warm up. I have so much less pain and stiffness. It's really amazing!
Great going, Kat – keep up the good work! Wonderful to hear that you're already noticing signs of improvement at this early stage. How does it feel to be on your road back?! 😀
Peace, Maz
Thanks JB and Maz!
I was feeling so good we decided to head to Walnut, to the antique stores about 75 miles from here. I was fine for the first hour of browsing the shops, then my back and knees started hurting and I felt exhausted. So we headed back. By the time we got here I felt most recovered but I am very very tired this afternoon (as they warned me might happen after the 4th or 5th dose). So its nappy time here in Ida Grove. 😀
PS, for anyone making the trip here, Walnut is, IMO, not worth the 150 mile round trip. Lots of very expensive stuff in stinky old buildings. I am glad we went but would not go back again ever. It felt really good to drive up to the Motel Delux and be back “home”.
Kim, I see you are doing MP now too. I'm curious to know how it's going. I was considering MP but cannot commit to that kind of intense protocol for the next year, due to some big stuff coming up. My plan is to do RB for a year and then possibly switch to MP, with the hope that I will already have done much of the work at killing the little buggers and that then the MP won't be so bad or take so long. Any thoughts?
[user=324]jfr[/user] wrote:
Kim, I see you are doing MP now too. I'm curious to know how it's going. I was considering MP but cannot commit to that kind of intense protocol for the next year, due to some big stuff coming up. My plan is to do RB for a year and then possibly switch to MP, with the hope that I will already have done much of the work at killing the little buggers and that then the MP won't be so bad or take so long. Any thoughts?
AP got me in a good state of remission, but I knew there was still more infection that was not being reached so it seemed reasonable to take it to the next level. From what I know now, it is probably Lyme that started all of my problems and AP doesn't go deep enough for that. I'm so glad I knocked down a large bacterial load before MP though because it is a pretty harsh program, so you are wise to wait until your life is a little less hectic. I don't have the serious light sensitivity which makes most people miserable so I'm lucky on that front, but I do take precautions. Fatigue is the toughest for me, but fortunately I can rest during the day which makes all the difference.
Just like AP, it is very individual as how people respond and the length of time before you notice improvements. John is the resident MP expert and can answer any questions. He's great.
Good luck…….kim
Perhaps the fact that you did AP before the MP is the reason you do not have the light sensitivity? That aspect is the thing I fear most and the main reason I'm not going to do MP this year. I realize there's no way of knowing if I'll have it or not, but I can't take the risk with what I have on my plate this year. I'm hoping that by knocking stuff out with AP I will reduce the likelihood of serious MP side effects.
This is all very scary. I worry about having a serious reaction to the IV clindy next week, as it will be my first foray into AP. I realize most people do fine with this, and I've never reacted to antibiotics before. It's the allergic reaction to the toxins I'm worried about.
Do people ever take Benadryl prophylactically when starting this protocol?:
jfr,
I was scared of a reaction to the IVs too! I seem to react badly to almost anything I've ever been given. Had my 6th IV tonight and still doing A-ok.
In the material I was given by the hospital here, is said that (at the time of printing) Dr S had treated over 800 patients without any bad reactions in any of them. That's pretty darn good odds, IMO.
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