LymeNet Flash: IV Treatment for Lyme

This is topic IV Treatment for Lyme in forum Medical Questions at LymeNet Flash.

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Posted by Fourknaz (Member # 2057) on :

My next meeting with my Lyme Doc is in September. After 7 years of oral treatments, I'm left with Lyme arthritis, plus still testing positive for Lyme, and having a low CD-57 number.

He is suggesting I do 3 1/2 months of IV treatment. Can anyone give me any literature or advice on this??

Posted by liz28 on :

I'd definitely try it, as long as you've made sure to get rid of the co-infections, you'll also get some cyst busters in at some point, and it won't cause too much financial difficulty.

The big question with IV rocephin seems to be whether it kills all the Lyme, or chases them into dormancy. That's a question for more knowledgeable people on the board.

Posted by robi (Member # 5547) on :

Liz ... have you done IV?

Posted by caat (Member # 2321) on :

I added flagyl, then switched to tinidazole with the rocephin and I honestly think it may have gotten rid of the lyme and left me with one or 2 co-infections.

Also left me with a bad sytemic yeast infection- be careful of yeast. Probiotics alone are most likely not enough with that combo. I needed a lot of flucanazole- the only anti-fungal that gets to the brain.

Posted by Fourknaz (Member # 2057) on :

Can anyone speak to the whole procedure of getting an IV? I'm more concerned with the maintenance of it.

Posted by valymemom (Member # 7076) on :

My son just had his first home health visit yesterday and the IV inserted. Our out of state llmd contacted our primary and they arranged for everything. The home health agency called and the insurance nurse who has my son's case called. It was an easy process.

The difficulty will be getting them to okay more than a month's IV treatment. That is a journey that is new to us.

My son got to choose between a mid-line catheter and an the inch hep-lock one.

He is pulsing the rocephin (4 days on/3 off) so he chose the catheter that isn't permanent but he was so very worried he would lay on his arm and cause it to come out of his arm. (Don't think he slept much).

He has been sick 6 years and on oral abx only for the last two years.

I am sure more experienced people will post or send you an email.

Go for it!

Posted by betsy (Member # 7105) on :

I have had a picc line in for nine months. The insersion process was an easy hospital event and I have wonderful homehealth care that comes once a week for lab work,dressing changes, and to set up 2 IV protocals that I can't do solo.

I have had a few mishaps in the 9 months...due to an accident my line came out too far so it had to be redone...also I got a blood clot on the line very close to my heart so had to get that line removed and put in the other arm. I have just pulled the darn thing out 2 inches but we are just working around that for now.

Would I recommend it...absolutely if symptoms warrant it. I have major neuro symptoms and although progress for me has been very very slow, I support the theory that perhaps an IV is best for brain issues. I am convinced that SOMETHING is holding back my progress but we can't find that something as of yet. Very frustrating! Still trying!

The picc line, drugs, home healthcare are very very costly. My insurance has been great and I feel very blessed with that. I reached my whole year's out of pocket in January. Make sure you do the homework first...you don't want to be surprised by a $10,000 or so denied claim for ONE MONTH!

Downsides to picc lines....can't do much in the way of aggressive exercise....bathing is a problem as it can't get wet....my skin is raw where the sight is with the constant adhesives.....rocephin has caused some gallbladder problems....risk of blood clots

What I have put through my picc line to date...rocephin, zithromax and vancomycin. Also..weekly vit c and magnesium.

Hope this helps. Betsy

Posted by Lymetoo (Member # 743) on :

quote:
Originally posted by liz28:
The big question with IV rocephin seems to be whether it kills all the Lyme, or chases them into dormancy. That's a question for more knowledgeable people on the board.

I would suggest something other than Rocephin....like maybe Claforan.

------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu

Posted by Stella (Member # 3119) on :

I was afraid of IV medication but did it and it changed my life for the better!!!

I took 1 gram of Rocephin everyday for 13 months. I was also on Flagyl towards the end to break cysts.

Vitamins, mild exercise, eating habits and positive attitude had something to do with my getting better as well, but I owe it mostly to IV.

It wasn't an easy journey, but I will go through it in a heartbeat if I ever get Lyme symptoms again.

E-mail me and I'll share more of my story with you.

Healing thoughts,
Stella