posted
What is your experience with oral antibiotics? How long did you try them before going the IV route? How hard was it to have the pic-line inserted?
Posts: 33 | From Silver SPring, MD | Registered: Sep 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I think this wpuld get more answers if posted on Medical page.
I did 6 yrs oral (with 5 weeks of Rocephen early in treatment.
Had ups & downs but overall slow spiraling ownhill.
My LLMD had me do IV Tigecyl when it first came out in 2008. Did 4 months and had to stop due to blood clot.
I did well on it & have been off Lyme & cos treatment since. Working on rehab/rebuilding.
I was DXd MS for 17yrs before finding out lyme.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I had undiagnosed lyme disease for at least 10 years.
Once diagnosed, my lyme docs gave me only oral medications. It worked for me. In April it was 6 years since I completed my lyme treatment and I am still symptom free, enjoying my life.
Also, I have at least 5 friends who had lyme and they all got rid of it with oral meds only.
The key to me is to see a doctor who follows the Burrascano Lyme Treatment Guidelines found here:
IV is not a silver bullet that is guaranteed to heal you. The doc is the key to getting rid of this disease. Can't emphasize that enough. A lot of doctors treat lyme, but only a few know enough to get rid of it for a person.
If you get to a good Burrascano type doc who has gotten rid of lyme for at least 3 people you know, then just do what the doctor says to do. If the doc thinks all you need is oral meds, then do that. If the doc thinks you need IV, then do that.
It takes high dose combinations of antibiotics to knock out lyme. And, the coinfections need to be treated with their own particular medications. So, even if you take an IV medication, you are still going to be taking oral medications along with it. You can't get rid of lyme on only one med.
Those that definitely need IV are:
bedbound wheelchair bound having seizures total zombie (can't follow a conversation, barely talks), and, not sure but perhaps those with the ALS presentation of lyme disease
I have 2 friends who had undiagnosed lyme for many, many years (20 to 50 years) with fibromyalgia diagnoses. Both of them had become "stupid" due to lyme disease. They both got rid of their disease and got their brains back on oral medications only.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - the 2 friends with long undiagnosed Lyme... How long before they got better on orals?
and do you know if they were treated for Lyme + all of the co's, or just one or two co's?
Just curious, but as you know just hearing about others ever getting well is such a huge help for those of us who have had the disease for over 15 years.
Thanks
Beagle
Posts: 348 | From MA | Registered: Dec 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Both of these women had lyme, babesiosis, and bartonella.
One could not detox (as was figured out in hindsight), so her treatment made her feel terrible the entire time and it was slow going. It took her 3 years and some visits to a naturopath near the end of treatment and then at the very end an ayervedic medicine practitioner to detox and feel well again. By the time the lyme doc said she was finished with treatment, she could only eat 5 foods. Everything else made her sick. (This woman may also have had ehrlichia. I can't remember.)
The ayervedic medicine practitioner fixed her up in 3 months (after completing lyme treatment). He said she had evidence of the tetanus shot she had had years ago plus her flu shot etc, still not cleared from her body.
This woman was likely born with lyme that she got from her mother because the mother and all 3 daughters had the fibro diagnosis and all of these women had white tongues their entire lives. (No doctor ever thought it was a problem.) This woman also had a daughter who, when she reached her 20s, got the fibro diagnosis. So, likely 3 generations of lyme disease, and at least 2 generations congenital.
The second woman had fibro so bad that she was approved for Social Security Disability benefits. She had had fibro for at least 20 years. She took 3 1/2 years to complete her lyme treatment.
This woman had to stop her mepron after 30 days because she turned yellow. All treatment stopped for about 5 months until her liver numbers returned to normal.
This woman had had a "totally unexplained" heart attack which we now attribute to lyme disease because tests showed she had no blocked heart arteries and the heart attack gave her no heart damage. So, she had a very bad case.
Treatment for her was also slow going because she had difficulty with all medications, as seen with the mepron above. But, she eventually made it through.
Posts: 9931 | From Maryland | Registered: Dec 2007
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