I've been so relieved to find this board, and so many of my questions have already been answered. I wish more doctors read this, since most of my symptoms are here, and I've always been told that it "may be" Lyme.
I'd like to know if anyone has any insights here, if you'd be so kind.
I had the rash 7 years ago or so, but no one bothered. Went untreated and undiagnosed, had some negative routine tests, till 2 years ago. My symptoms were vague: some shoulder pain, but I was doing pottery, soo...then, some memory problems, tinnitus, pericardial fluid, twitching of face muscles, strange vibrations and buzzing in legs, sudden weight gain, water retention all over.
Two years ago, my legs started swelling, one thigh first, then the other, then it became a slight pitted edema, bruising increased. No one but I worried. I started having shooting pains in the legs and barely could walk.
Finally, I found a doctor who went through the whole testing, and of course, it was Lyme.
I've been on Minocycline, Tetracycline, Doxy, etc.but just one at a time. I have a sensitive GI so it was bumpy. Finally, am now on an anti-candida med, which supposedly works for Lyme.
Some symptoms have improved - but stiffness in legs and swelling, as well as buzzing in leg and twitching nerves have stayed most of the time.
I am beyond discouraged and I am giving up on pursuing anything much. Please advise me if you can.
Sorry to be so long and needy, but I realize that the Lyme sufferers are the most informed of all.
THank you, and the best of health to all,
-------------------- June Posts: 22 | From CT | Registered: Jan 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
I was bit 8 years ago. I've been on antibiotics for a year now.
I've improved alot w/ the help a lyme specialist.
You need a Lyme literate doctor. Go under seeking doctor and ask for one. List your town and state.
It's the best thing you can do for yourself.
Did ya read all the newbie stuff? Newbie links. You've come to the right place.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Thank you, Heather. I have seen two Lyme specialists, and I have posted on the doctor search site. I have to say, I am not happy with the treatment, so I am actually looking for another doctor.
Thank you, and best wishes,
-------------------- June Posts: 22 | From CT | Registered: Jan 2006
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liz28
Unregistered
posted
Here's what has helped me so far--but of course, this is just one person's experience, and could change if something better comes along. Please don't hesitate to do a lot of comparison with other abx protocols.
Lyme: omnicef 300mg/2x day ketek 400mg/2x day Intense liver support required--not just a couple of dinky milk thistles, but handfuls of supplements.
Bartonella: rifampin 300mg/2x day ketek 400mg/2x day Symptom-free after five months of abx, am keeping fingers crossed.
If you reach a point where you seem close to being done, and have no other continuous symptoms that might actually be a co-infection at work, you can throw in flagyl or tinidazole, pulsed 3-5 days a week, until you stop herxing on them.
I was disabled with no break for four years, switched to this regimen a year ago, and am now only experiencing babesia symptoms. And it's going to be nailed soon...
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posted
You are not taking any abx that will treat cystic form of lyme. Ask your doctor about a form of mepron, like flagyl.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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Troup, above is stating misinformation. Mepron and flagyl have nothing to do with each other. It must be a typo or something.
Mepron is atavaquone and is used for malaria and babesia microti. Flagyl (metronidazole) is an "azole" as we call them and has been found to break up the cystic form of lyme disease.
You have to also consider the many coinfections that can be passed through the same tick and other types of ticks.
Find a LLMD that has a good rep and read, read, read about these diseases.
Also, you haven't tried any other class of drug but the "cyclines." There are so many more that have helped people with lyme. There are many different strains of lyme that react better to other classes of drugs. At least with all of those "cyclines," you probably don't have Ehrlichia anymore if you had it to start with.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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BostonLyme2005
Unregistered
posted
Hi,
Find a LLMD...Do what they say! See what your results are....Post ?'s here as well...Follow your Dr.'s directions..
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