posted
It all depends. Some people don't need IV at all. Some people need a lot of it. It also makes a difference what stage of disease it is. Early cases don't need as much treatment as late cases. Chronic cases may not be curable, but are usually treatable. Unfortunately, a lot of people can't get treatment, or if they do, the ins co won't pay.
If you tell us more about when you think you were bitten, or how long you have been having symptoms consistent with lyme, it might be possible to make a better guess. Also, what kind of symptoms? Neuro? Arthritic? Other?
Posts: 8430 | From Not available | Registered: Oct 2000
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
I was on IV rocephin for 6 1/2 months. It took 4 1/2 months before I felt like I was in the land of the living again (not well by any means, just functioning again).
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
I was mis-diagnosed with MS for approx. 20 years. Have now found out through a spinal tap that I din't have MS, but rather Lyme from at least 20 years ago. Starting Rocephin IV next week and wondering how long I may have to be on it, any guess? Thank you
Posts: 43 | From Suffolk County | Registered: Mar 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Kings Park~ No guess how long you'll need IVs. I wish I could have stayed on longer, but a fungal infection in my picc line required that it be pulled.
Make sure you get a monthly blood culture from blood drawn from the picc line to catch any subclinical infections.
Hope your insurance covers it...it is pricey. Daily rocephin, weekly nurse visits and weekly labs amounted to $7000 a month for me. I think generic rocephin is available now, so that should help.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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posted
more history, 10 years ago, bitten, diagonised and treated with orals for 2 months. Did not do a follow up, started having head aches 6 months to a year later. At first 2,3 a week, now every day. Brain fog, fatigue, are both with me constantly. MOOD swings, from Rage,sucide to never stop fighting for loved ones.
I have jiont pain but assumed it was do to my age of 44. I also have blurred vision and my eyes have changed several times. Again I thought was do to age.
My ability to focus is near to none.
With Dr. R since Dec 30 days of orals, then two months of IV. took a week off and now going back. During week had good days but bad also, assuming it was the numerous weather fronts, yesterday it was freezing in KC today it is 65.
I can not get insurance to agree to pay. I am going forward though. I am hoping that the thrid is the last treatment.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
It sounds like you have had it for ten years. That's a long time for the bugs to get entrenched. As Lou wrote, not all chronic cases are curable but are usually treatable. I fall into that category and am doing well.
When I was deciding what route to pursue, part of what I took into consideration was looking at what regimen was sustainable regardless of what insurance did. I did not want to get several months into treatment and then get cut off. As my insurance had not been problematic about orals, the decision my doctor and I made was to go with Biaxin and intramuscular Bicillin LA. I lot of chronics do well on that. I also did not like the idea of having an IV in my arm as I hoped to become physically active again. Also, I like to go to the gym, swim, and sit in the hot tub. All of these things are somewhat problematic with an IV. I just inject myself with Bicillin three times a week.
I encourage you to use the search function and check out various meds. Good luck. If you want to know more about my treatment, PM me. A lot of people here have heard it all before.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
My daughter was on IV Rocephin for 2 months before gallbladder issues, then IV Claforan for 1 month but was allegic. She improved some on both, and then took 4 months off before trying 2 months of IV Zithromax with no change. 11 months ago she started IV Doxycycline and it has been amazing. Consistent improvement seen just about every month. Even the winter setback found her better than a year ago. Total she has been on 16 months of antibiotics and has had 2 ports and insurance is still paying. We pray it continues. Her LLMD says as long as she is improving he doesn't want to stop. This was after 2 years of nothing dramatic on many oral meds.
Posts: 55 | From USA | Registered: Sep 2005
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posted
My daughter was on IV Rocephin for 2 months before gallbladder issues, then IV Claforan for 1 month but was allegic. She improved some on both, and then took 4 months off before trying 2 months of IV Zithromax with no change. 11 months ago she started IV Doxycycline and it has been amazing. Consistent improvement seen just about every month. Even the winter setback found her better than a year ago. Total she has been on 16 months of antibiotics and has had 2 ports and insurance is still paying. We pray it continues. Her LLMD says as long as she is improving he doesn't want to stop. This was after 2 years of nothing dramatic on many oral meds.
Posts: 55 | From USA | Registered: Sep 2005
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