Ok, let's see if this works...trying to quote and reply to everyone... lol
Girlie said...
Personally, if I had access to IV , I would do a run of IV for several months.
But, I don't. To get IV, I have to either camp out on Washington DC for several months, (which is not doable - i.e. expense) - or go several times (every 4 - 6 weeks) over the several months.
I would also have to pay out of pocket for the Picc or port to be installed.
just too much $$
I can't do either.
i would want this to get the abx into my brain/spinal cord effectively.
I don't know enough about IV abx to advise you. I do know that some people have done Rocephin, others' have done Vancomycin.
Re artesunate /aremisinin. I've taken both, and I do not find them easy to take.
Gah! It's infuriating that money comes between people and getting the care they so need! Can I ask what effects the artesunate had? Was it in pill form?
Girlie said...
You know you should be on Actigall for your gall bladder when on IV abx, right?
As far as C-difficile goes - I would think the the IV abx would be WAY better for your gut than oral antibiotics.
I haven't heard overwhelming testaments that the IV rocephin is difficult to take.
BTW - is your nurse friend lyme literate? If not, then it's maybe not a good idea to discuss what's good for lyme...as she may not be knowledgeable, or know enough people to have a good idea of successes, tolerance, etc.
I had not heard about
Actigall before...definitely something I will ask my ND about
. Yeah I think IV abx probably is better than oral, I'm just upset and frustrated about
having to go through it. Although I guess I should be grateful that it's even available to me (wish I could send them your way!).
My nurse friend works at another Naturopathic Clinic with a doctor that is supposedly very Lyme literate (also VP of the WA Association of Naturopathic Physicians, a member of the American Association of Naturopathic physicians and the WA chapter of Physicians for Social Responsibility) so I do have an appt with her clinic on 6/5 to see what other things might be recommended and also to see if there's a possibility of the 2 ND's working together as her clinic is much closer and easier to get to if I have to do some kind of IV therapy multiple times a week. I'll see how that goes, but I think it would actually help me a lot having someone I know set up my IVs (especially who knows what a baby I am!) so it may turn out to work out for the best.
goshawk said...
I would go to Hansa for treatment if was able to.
Instead I have gone all Buhner Bartonella herbal protocol and also building the immune system(11 months ago).
Starting today I am going to start different methods and outlooks for handling stress.
Sorry that you are going through all of this and keep asking questions and reach out for support when ever you need to.
Treatment takes time and can also need to be changed from time to time to get well.
Take care and I wish the best of healing.
Thank you!! Yeah, stress is something I don't handle well either but I've been informed is extremely important to limit as much as possible while healing.
Notime4lyme said...
I'm glad I did what I did... Lot's of different herbs. I decided I didn't want to do IV.
I don't know about rocephin.
That's what I was hoping to do too, but it's not looking like I'm going to be able to handle them. I thought the herbal route would be gentler and easier to deal with but I'm finding that it's really different for each person. I'm glad it worked for you though!
Sheeks175 said...
I have taken IV rocephin and I currently have a PICC line. It is not as bad as you would think. They make bandages that cover the PICC that are well tolerated for people with sensitive skin like me. I had to get a different bandage than the standard, but it is no big deal. Whoever will be handling your IV supplies will have a stock of many different bandages.
Rocephin is well tolerated. It is very easy on the gut compared to orals. In regards to C-diff, while you are on antibiotics you should take at least 100 billion CFUs of probiotics 2 hours away from your antibiotics.
While on rocephin you need to take actigal to prevent gallstones, which is a common side effect of rocephin, but the actigal is an easy way to prevent it and actigal is very well tolerated as well.
If you take oral antibiotics take them with a meal to prevent GI upset.
I guess I won't really know until I at least get one treatment done, I'm just afraid of feeling lousy and herxing like crazy since I have the CBS gene mutation which inhibits detox. I have some detox strategies in place but I'm worried about
getting through some of those too. Can you feel the PICC line once it's in or do you actually forget it's there once used to it? Are you a super sensitive to pain like I am? How was the procedure getting the line? I worry about
sleeping with it because I toss and turn and am afraid to catch it on something while sleeping. I can't even manage to keep my wrist brace on all night before getting annoyed with it and tossing it off! Do you think a PICC line is worth it for even just 2 IV's a week? The only reasons I haven't completely dismissed the idea of getting one yet are because my veins are horrible, IV's and blood draws are painful (and often require multiple pokes) and since they can be used to draw blood from as well, it would make the frequent blood work my ND wants me to do much much easier. But right at the beginning of summer? I think that has to be the worst timing possible. Kinda like finding out I had diabetes a week and a half before Halloween! At least that went away with the weight loss.
I definitely will ask my ND about
Actigall because gall bladder problems are so common after all weight loss surgeries already so I don't need to add any more risk factors or be forced into surgery while my body is already so weak and ill. Thank you!
WalkingbyFaith said...
I don't have answers about the meds.
If money and eveything else were no objective, I would like to go to Hansa.
In fact, the next doctor I seek out will likely be one who does bioresonance. I don't really understand it very well, but it sounds like a cheaper (I think) and easier way to identify exactly what my driving issues are so I can address them in an effective order. At least that's what I've been leaning towards lately.
I have not heard of bioresonance...another one to look up! There is so much information out there that it seems impossible for one to learn about
all the possible treatments there are. I'm actually wondering about
Dr. Klinghardt and the Sophia Health Institute since it's so close to me but it's so expensive and the soonest I could even get in for a
telephone patient interview/consultation wasn't even until July 2nd!
I am so grateful for this board because I think I've learned more here than I have in all the other places I've been reading. There's really no substitute for being able to share our experiences and help each other through this situation that we've found ourselves in that just plain SUCKS!
Now I don't suppose any of you know how to read, or know someone else who knows how to read, a brain MRI? lol Patience has never been a quality I've ever been able to learn! haha