posted
I have been on oral abx of various types, a year on Bicillin shots and am now at least 6 months into Flagyl/Ketek. My neuro symptoms are greatly improved. When I stopped the Flagyl to take Septra for a bladder infection I quickly relapsed and had to start it up again along with the Ketek.
My LLMD said to prepare myself for the idea of an IV for Rocephan in August. Is this the usual progression? I am wondering if this is a lifetime ordeal! And what happens when the Rocephan is stopped....do I relapse again?
Getting the IV is a big deal for me...cost, infection, etc. I am on Medicare and am concerned that I will have to find a way to get it paid for. My husband is very experienced at managing my old port and can easily do them for me every day. But I have heard that the only way Medicare will pay is if I travel to a dr. office daily and that is ridiculous.
Any thoughts?
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I don't understand if you symptoms are improving why not stay on oral meds? Why IV if orals are working? Perhaps you are stopping meds too soon if you're relapsing?
I only started IV after 12 months of oral antibiotics and herbs and 1 month on Bicillin with NO improvement. If my symptoms didn't continue to deteriorate I would never go on IV meds.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
How long will Medicare pay for IV? 4-6 weeks or will they do it for months. I don't know how long their time is?
How long is LLMD wanting to have you on it?
I seem to recall it does need to be done in office/hospital? Not a good plan I would think unless the place is block from home or very very close.
I did IV after 2+ yrs of orals. 6 weeks was all insurance would pay. I found it worthless for that time period. Did get one good day from that.
Sometimes LLMD throw out ideas and don't think about the expense or all the how to do with each patient. It is all over the place.
Some companies pay for months and months. Some 4-6 weeks. Out of pocket you would need big money.
I can't image traveling to do it? How many times per week. 3-5 days back and forth. How would you get there on bad days when you don't feel up to getting in car?
So many questions.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
My LLMD says you only need IV when orals are not making progress or when you have very bad neuro symptoms.
-------------------- IgM- 31,34,39,83-93 IND IgM- 41+
IgG- 31,34,39,83-93 IND IgG- 41++ Posts: 610 | From Lymeville | Registered: Nov 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
If you are improving on orals, why not just keep doing that?
My daughter started IV after being on orals for a year, but it was our decision in the end. If I didn't think we could afford to do it when the insurance quits paying, I would have never put my daughter through all of that.
I wouldn't do it for just four weeks. I think it would be better just to stay on orals.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am not against IV but dont forget there are risks assocaited with it. (the line could get infected/blood clot ect) that you dont have on orals.
Also rocephin can cause gallbladder problems. One can loose there gallbladder to rocephin (i did, after much pain , problem er trips and hospitaliztions)
Like I said i am not against iv in any way. I just want you to be aware of the added risks AND that IV is not a guarentee either. It is still a medication treating the disease(s). Its not a magic potion that will definetely just fix everything.
Have you been acessed for coinfections? and yeast overgrowth? these among many other things are important in treatment.
posted
I just started IV after two years on heavy oral antibiotics. I was not really progressing and constantly feel out of my skin. As if I'm not myself. I have huge executive function / memory issues.
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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posted
Thanks, everyone. You are certainly echoing many of my own concerns.
Yes, I do have serious neuro issues: speech, memory, cognition, swallowing and now probably bladder function. All these problems appear very strongly when I am tired or off the meds.
I think he feels that I will need the IV for some time. He is not satisfied with my progress.
If the Flagyl/Ketek keeps working and I improve, of course I will stick with it. But my improvement rate is very slow, I am still in bed too much and I tremble and perspire with the slightest effort. Some of it is deconditioning, but not all. I have had periods of time when I was quite functional.
One thing that helps is the lymphedema therapy I get at a hospital rehab unit. It is a very effective detox method.
Yes, I have been tested for co-infections and have a few of them. I take Florastor and Fluconazole for yeast.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Just so you know there are also other IV abx used for lyme (and some of them treat coinfections). some of the others are (brand names)
doxycyline
zinthromax
clafaran
I think their may be others too.
I have heard some people say diet did make a difference for them in their recovery. I dont know if you/your dr have considered food issues.
posted
I started IV after 2 years of orals and I am getting better.
Medicare will cover if you go to outpatient infusion for 6 weeks.
I did Infuserve for a few months and now mix my drugs at home with husband help. There are ways to do it cheaper if you want to take it on but you need support
Posts: 128 | From MICHIGAN | Registered: May 2008
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posted
Just by accident I was hospitalized for septicemia for 6 weeks in 2003. I went in in a wheelchair, having been bedridden for at least 10 years. I was barely able to stand.
I got 2 IV's a day...vancomycin and naphcillin. The side effects were horrendous. But I walked out of the hospital and began walking for blocks and blocks. Everyone said it was a miracle.
But years later I got worse and worse and that's when the sophisticated DNA testing showed the lyme and other coinfections I had. No one at the hospital ever thought to test me for lyme, even though one of my symptoms was a terrible rash.
So I know that the vanco will work. I just need to be hospitalized for it and I don't know how long I would need it.
My LLMD thinks that the Rocephan will do the job. But I can't see how I can go daily from our rural home to an infusion center. I may try to talk a local doc into helping me.
My husband is very experienced (I had a port for 6 years that he managed) and capable if we can get a doc to sign on. Medicare is crazy to insist that we run up huge bills for infusions when we are perfectly able to do them at home, especially if we see the doctor every week or so to check on the shunt.
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
farraday~ I was on IV rocephin for 6 1/2 months and it helped me tremendously. It was the first medication I tried because I had pretty severe neurological problems. I got a fungal infection in the picc line, the line was pulled and 3 weeks later all of my symptoms came back and hit me like a freight train. IVs are expensive and they have their risks.
Since then I've learned that I am also battling various chronic viral infections. So I am on both antibiotics (oral) and antiviral medication. I've made progress.
I would suggest you get tested for the various viruses listed on this website: http://chronicfatigue.stanford.edu/infections/ (click on each pathogen, then click on "lab tests") If any pathogen comes back with very high antibody titers, consider treating that first before going the IV route.
Good luck, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I was on IV Roc. for six months and it provided a tremendous amount of recovery. Make sure to take Actigal sp. to provide some protection for your gall bladder. Good Luck! climber
Posts: 108 | From Connecticut | Registered: Jun 2010
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