posted
Hi folks - thanks again for all the support. I don't know what I'd do without it.
Saw doc last week, had to stop all abx, adrenal glandular and support, and several supplements b/c of severe gut pain, weakness, puking...
My gut just can't take anymore. When after not being able to stand long enough to shower in 4 days, I finally got a shower only to throw up on my nice clean self while still in the shower. Sigh - and that's the most activity I've gotten in several weeks...) At least it was easy to clean up.
Anyway - decision to stop for a little while so I can regain strength, and then I'm to get a pic line and start IV Rocephin, and switch to sublingual versions of anything else I can find that way.
My questions are
1) I am having trouble b/c I'm in NM where insurance companies don't even know Lyme, and of course they don't want to pay for any LT abx, or IV.
How can I get them to pay? They say I just have to get a preauth, but, I don't believe them since they've turned down all other requests regarding Lyme.
2) Can I get someone to come to my house to do the IV, since I can't drive and don't have rides 7 days a week? I'm thinking through my medicare - some kind of home
nursing/healthcare? (I used to start my friend's IV's for his pic line (AIDS).Anyway to convince them to let me do this myself?
3) Can anyone comment on how they felt on IV Rocephin as opposed to oral abx (I was doing Ceftin or Biaxin, with Albenza and Tinidazole. I'm allergic to tetracycline.) Is it a sudden feeling or sort of constant like with oral?
4) Anyone know good sources for spray vitamins, other sups like adrenal suuport, or other typical stuff we all take?
Thanks!
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
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posted
up for some help. I don't know enough about IV to help you any!
Someone will be along soon, I'm sure!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Good morning Lymiebabe,
I am not an expert by any means...but I did stay on IV therapy for 15 months, so I can answer a few of your questions.
First let me say that I am so sorry about the tummy issues... Have you spoken with your doc about repair? Once you stop the orals, you may be able to repair the lining with some L-glutamine...please find out about it, OK?
Unfortunately, many of these answers will depend heavily upon your insurance carrier, and what they will allow you to do.
You can have a PICC placed at home, but that decision is up to the insurance.
The same thing goes with aftercare. A homehealth nurse will come once a week to change the dressing and draw blood. It would be very simple for you to do this yourself, but it is the insurance that will decide what is permitted. Length of time for IV usage will also be their call.
Are you aware of the patient assistance program through Roche? They manufacture rocephin and are very good at providing free meds when there is a need. If you would like their contact info, let me know.
But, if you do get free meds, you will still have to finance the other misc. stuff. Blood checks, flushes, misc. supplies, etc. It is complicated, but can be done!
I do believe that rocephin helped me tremendously, but it took a good 2 months to turn things around.
You will run across a few horror stories with rocephin. I think tis due to several reasons: the treatment was usually monotherapy, it was ceased too soon, was not followed up with orals, and Actigall was not prescribed to protect the gall bladder.
Of course, not all meds will help every person.
I'm sorry; I don't know enough to address your last question.
My best, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Rocephin helped me alot but I had to go off it do to gullbladder issues from the rocephin...
I ended up having my gullbladder removed.
I am not positive but I believe that medicare only alows about 30 days of IV...
Also I believe they require you to go to the hospital to infuse...
BUT maybe they make exceptions if you are homebound which you sound like you are...
If they let you have home health care.... a nurse comes out and shows you how to infuse properly...
Then they come out about once a week to change the bandages ...
and they also take bloodwork when necessary... they can usually get it through the picc line.
I would call the insurance company and ask them if they allow home health care.... if they say no.... stress the fact that you are homebound.
posted
Thanks for the responses. Roche has discontinued patient asssistance. So - back to fighting wiCn anh the insurance companies/medicare...
Can anyone give me more info about what happened to their gallbladder? Also - any other success stoires? Anything I should watch out for (other than the typical pic line problems, etc...)
-su
-------------------- Forgiveness is the fragrance that the violet sheds on the heal that has crushed it. (Mark Twain)
"It's only after you've lost everything," ... "that you're free to do anything." (Chuck Palahniuk, Fight Club) Posts: 24 | From somewhere outside Boston, MA | Registered: Feb 2006
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