posted
1. I've been getting all my txment covered by insurance so far--will this stop after I've had IV for however long they say you can have it for? I have bc/bs.
2. I read one study in which it was stated that IV ceftriaxone was no better than oral doxy in many cases. Anything to this?
3. Has anyone with a neuro case ever made a full recovery without IV abx?
4. What's my risk of developing a serious complication (like gall sludging or sepsis) if I go on?
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Hi Adam, I personally think IV is streets ahead of orals of any kind. My first treatment was oral Doxy but all it did was open a massive can of worms that I am still trying to put a lid on.
I feel it just stirred up all the co-infections and the heavy neuro stuf kicked in.
I flew to Germany about a month later for IV treatment as my ex girlfriends mother had a clinic there.
I arrived there barely able to climb a fight of stairs and in a total mental fog. 10 days into the IV I was snowboarding down a glacier in the Austrian Alps.
My intitial diagnosis was made after I developed floaters and Uveitis in my left eye. This cleared up too. Infact the only symptoms I was left with was mild tinnitus and a few floaters.
I relapsed like a frieght train 2 weeks after I got back whilst on oral Amox.
I have been on many treatments since then but nothing has touched the eye inflammation since the IV. Even two double shots of Bicillin a week.
IV for me was streets ahead of anything. I am hoping to finally go back on it soon and get a PICC installed.
Get on it if you can is my advice.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Hi Kat, I think you are wasting your time for sure. They all read off the same hymn sheet and you will proabably just come out of there feeling be-littled and sick.
The sludging Adam refers to is because IV Ceftriaxone can crystalise in the Gall bladder which can lead to it having being removed. You must take actigall or similar to ensure this does not happen. It is on Dr B's guidlines.
Good luck with your appointment all the same. I went to 2 ID docs. Came out fuming and I still have those arguments running around my head.
The last one did not end well at all, I refused to shake his hand and told him he was a disgrace to medicine and that ID docs need to get there heads out of the the sand about chronic lyme.
I just stormed out and cursed myself for being so foolish. I am just a gluten for punishment.
Stick with your LLMD and let the rest be damned. You will have far more peace of mind which in turn will help you recover faster.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I wish I would have had the guts to tell the first ID doc I saw what you did. he deserved every bit of it. Complete arrogant A######. He was a complete disgrace to medical. The jerk didn't even accept credit card payments when I received my co-pay bill in the mail. I was tempted to tell him to shove the $20 bill up his ###. Can you tell I liked him? lol.
quote:Originally posted by NMN: Hi Kat, I think you are wasting your time for sure. They all read off the same hymn sheet and you will proabably just come out of there feeling be-littled and sick.
The sludging Adam refers to is because IV Ceftriaxone can crystalise in the Gall bladder which can lead to it having being removed. You must take actigall or similar to ensure this does not happen. It is on Dr B's guidlines.
Good luck with your appointment all the same. I went to 2 ID docs. Came out fuming and I still have those arguments running around my head.
The last one did not end well at all, I refused to shake his hand and told him he was a disgrace to medicine and that ID docs need to get there heads out of the the sand about chronic lyme.
I just stormed out and cursed myself for being so foolish. I am just a gluten for punishment.
Stick with your LLMD and let the rest be damned. You will have far more peace of mind which in turn will help you recover faster.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
iv is no better than oral combos in a lot of very good llmds opinions.
that being said i had 1yr of it so i cannot say id be where i am now w/o it.
i do think if ins will pay for it to do it.
it is much easier on the gut and if medicare would approve it for me now instead of may of 09 id have a picc in me...
anyway, it will help with the neuro stuff, yes. is it permanent, no.
you NEED to transition to AGGRESSIVE high dose multi oral combos ASAP once the IV is pulled.
and as far as the sepsis yadi yadi yah youre fine
keep the dressing clean change it 2-3 x week and its all good.
be sure to flush it with saline and heparin 2x day and the rest is history.
IV is great IMO.
you can achieve the same success with long durations of high dose multi oral combos but iv is easier and good for the very ill.
honestly, i cant say its that much better, but easier, yes.
many drugs such as doxy (mentioned in this thread) penetrate NO better into the brain than IV. for ex. doxy dose for this analogy is 400mg
CSF concentration was no greater in the patients who took 400mg oral VS 400mg IV. this is the case with many drugs but not all of them. some, such as rocephin, have to be administered via IV, etc.
good luck. there are MANY awesome IV drugs id like to try. consider yourself blessed if it goes thru.
keep your eyes open for MERREM, IVANZ, TIGECYCLINE, AND MANY OTHERS.
the above 3 and others like it (i failed to mention many) are only avail IV and provide great benefit. most were formulated for MRSA.
zyvox is another.
questions 1 & 2....
IV roc VS oral doxy, no way to tell. every patient is different. end of story.
INS co, duno, its your ins co.... they will not cut off oral coverage after IV to be sure, but if they cover more than 3-6 months of IV consider yourself blessed.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I"m not sure anyone can answer #1 definitively - it depends on your particular BC/BS plan. Is it through your employer (usually better coverage) or is it an individual plan that you purchased?
In our case - (not BC/BS) the ins. co. paid for 30 days of IV treatment only, but continues to pay for dr. visits and other medications just as they had before. And because our plan provides unlimited home health nursing, it continues to pay for those weekly visits to change the picc line dressings even though we had exceeded the 30 days of IV treatment.
Not sure what your IV arrangements are going to be, but if you are infusing at home and your insurance offers you mail order pharmacy plan of 3 mos supply for 1 mos co-pay, you may try ordering the medication that way. We were successful in getting the ins. co. to pay for 3 mos. of rocephin in that manner - but our dr. office was reconstituting it and we were infusing it at home.
Posts: 39 | From wdc | Registered: Aug 2007
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