I have had lyme for 15 years. I got it in the US but i live in
Australia. Ive grown up on the east coast but mid last year my
fiance was tranfered to the west so i went. I wasnt doing
brilliant then but we didnt think it was lyme.
In October my lyme test was positive so i flew back to the east to
see the lyme specialist and my lyme doc. They started me on IV
rocephin along with Fasigyn for the cysts. I just finished the
three months the id doc prescribed and i desperatly want to go
home to my fiance.
I have tried every ID doc in the state (western australia) and no
one will treat me with anymore ivs. I have tried all the iv friendly
docs that i could find out about and none of them will take me
on.
Basically if i want to go home i cant stay on ivs. But if i stay here
the id doc wont prescribe anymore so i would have to go to my
docs everyday and hes about an hour 1/2 away. I dont know
what to do.
We will me moving back close to the doc when he gets
transferred back but thats 3-5 months away.
I need advice on what to do. Will I improve if i stop the ivs and
do orals or do i need to be on the ivs for longer? My doc ideally
wants me on ivs for 6-9 months. I( cant afford to go backwards
i really need to improve. Im getting married in 6 1/2 months.
I dont know whether to find a way to go to the doc here 5 days a
week or go home and go on orals. I thought some of you might
have experience in what happens if you go off the ivs at this
point and what will happen if im on orals. Will I get better?
I need advice and experiences from those whove been there. I
need help decieding what to do. Whats best for me as a whole.
Btw my flights in a week so i dont have much time on this
Please please help me figure out whats best
Thanks
Ozcat
Posted by lymeout (Member # 8045) on :
ozcat, I wish I had surefire answers for you. But I don't think anyone does. I can only share my experience.
My daughter has been on IV therapy several times, totaling at least 10 months over a 3-year course. She is not better. I don't think I would make IV access a reason for changing or not changing locations.
I would try oral ABX theapy in combination with aggressive homeopathic therapy. If our LLMD hadn't started including this, we would be looking for for a homeopathic doctor!
You might need to reconsider IV's down the road, but why not consider this "phase two" approach?
I'm hoping someone else can refute, support or add helpful information to this. It is terrible to have to face such dilemmas as this.
I hope things work out for you.
Posted by dontlikeliver (Member # 4749) on :
Hi Ozcat,
I don't know the answer. But, I do think that people are on IV a lot less these days and some orals/combo's have been found to be very effective.
There is also IM Rocephin and IM Bicillin, which might be another option for you.
DLL
Posted by lou (Member # 81) on :
People respond to different meds on different schedules, so there really is no way to know how you will react to any med. Some do fine on orals, some need IV.
How are you responding to the IV?
If this is the right med for you, then I would think that continuing would be important and that 3 to 5 months is not a long time in the grander scheme of things. It is also not long for someone who has chronic lyme and needs longterm treatment.
It might also be a factor on what kind of line you have. Once that is taken out, might be hard to get it put back in.
No one knows how you will respond to other meds. If you currently have a doc who will do IV, why dont you ask him/her about IM bicillin or IM rocephin?
Posted by bettyg (Member # 6147) on :
oz,
Try contacting AUSSIE BARB, one of the moderators at:
Perhaps she might have some ideas & you could check the drs. list with her! HOPE she can; she was always a person giving 200% Send her a PM there; it works like this board does...ok.
If you talk with her, please send my best to her ok! We got to be good friends on that board before I came here since I do NOT practice the MP protocal.
I have NO knowledge on ivs, just trying to hook you up with a fellow Aussie.
Posted by riversinger (Member # 4851) on :
IM Bicillin is being found to have good results in many people with neurological issues. There is no way to tell for sure how it might work out for you, but it may be a reasonable option to IV if you need to move.
It is often used with an oral in addition, usaully a macrolide like Biaxin or Zithromax. Have you looked at Dr. Burrascano's Treatment Protocols? It will give you some idea of what might work. the only real answer is to try, but many do well on orals or with the Bicillin.
Posted by ozcat (Member # 8076) on :
Even if i stay and remain on the ivs with this doc there are problems. I cant get homecare anymore and my doc is over 1 1/2 hrs away so if i wanted to continue treatment i would have to travel up and back every day (which you guys would know would be sooooo rough on my body) or move which is hard because me and my fiance are having trouble paying the rent where he is and where im trying to get back to.
If i stay there are just as many difficulties as if i go.
I was herxing big time on the ivs but because of the length of treatment was only three months it wasnt long enough to see if i was improving or if the herxes would lesson because we were making an impact on the bugs.
I believe the rocephin was working i just think i hadnt been given long enought to make its mark. My do aggrees but he also agrees that its better for me to be with my fiance for my overall health. Normally i would think i could get back on them in a few months and in the great scheme of things its all still good but with a wedding and a honeymoon in 6 months time its kind of important to me to be doing everything i can now so i have my best chance to be ok for them.
If i go i dont get ivs if i stay i have to travel every day or move. Theres no ezy choice. I just want to know that if i go on orals that i will still be heading forward. I dont want to be on something that only maintains where i am now cos where i am now sucks. The only reason im not totally bedridden and in tears all day if because or the oxycontin im on. Since i started treatment thats the only thing thats made me feel a bit better and i know thats only because its masking the pain.
I want to keep herxing its my way of telling how im going and the meds he put me on in the mean time clindamiacyn arent doing that - they arent killing them off