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Old 04-07-2017, 05:01 PM
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Default Any other Lymies? (Lyme Disease)

I listen to a lot of NPR and today I tuned in midway through a broadcast on a "frustrating" and "mysterious" illness. It took me all of one minute to realize that the laundry list of symptoms and lack of adequate treatment associated with the illness was in reference to Lyme. I've lived with it for 30 years. What fascinated me the most about what the guests of the broadcast were saying was that next to no advances have been made in treating Lyme. 30 years ago I was offered a two week course of antibiotics for "whatever" I was battling. The treatment, with a high failure rate, is still the same if I were to contract the illness tomorrow as it was in 1987 and yet 300k new cases are diagnosed every year.

I'm curious if you have (or had, as some folks are able to live symptom free after the recommended treatment) Lyme and how it affects your life.
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Old 04-07-2017, 05:20 PM
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I have had it, about 30 years ago, too - it's practically a requirement of dealing with horses and riding in woods and fields. It was utterly miserable - slept 18 hours a day and bitched 6. Getting rid of it was insanely simple then - doxycycline 100 mg. twice a day. And it did get rid of it; I could tell within the first 24 hours.

I was also in a vaccine trial back then. Obviously they weren't successful enough with that vaccine, as there's still nothing on the market.

I've only gotten it once more, and as soon as I recognized what it was, I grabbed the horses' doxy and cured myself with it (horses get it, too).

Now, if I find a tick, I treat immediately with 2 doxy, then one AM and one PM for 3 days. It's worked perfectly.

On the other hand, I have an acquaintance who had testicular cancer, was cured, but gets Lyme periodically. How does he know? Epileptic seizures! Take doxy, they go away, but it's really hairy if someone else doesn't know why he's suddenly writhing on the floor.
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Old 04-07-2017, 05:35 PM
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I have had it, about 30 years ago, too - it's practically a requirement of dealing with horses and riding in woods and fields. It was utterly miserable - slept 18 hours a day and bitched 6. Getting rid of it was insanely simple then - doxycycline 100 mg. twice a day. And it did get rid of it; I could tell within the first 24 hours.
I'm so glad that worked for you! I wonder what factors influence a person's ability to respond to the antibiotics. I was 8 when I was bitten, they gave me two weeks of amoxicillin and then said they just didn't know. Keep in mind I lived on the West Coast. Physicians out this way are still undereducated about it, but back then it was unheard of. It took my grandmother reading an article a year later in Family Circle to connect the bullseye rash (not always present) I had to this illness. But even then, it was the hard and fast rule that Lyme wasn't present on the West coast. They sent my Western Blot to the CDC and sure enough.

I had horrible symptoms through my mid-teens. My joints would swell to the point I couldn't walk and the fatigue you mentioned is no joke. At this point, my care is overseen by a rheumatologist. Basically, if it can inflame, it will. It can be pretty frustrating.
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Old 08-11-2017, 07:59 PM
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I'm so glad that worked for you! I wonder what factors influence a person's ability to respond to the antibiotics. I was 8 when I was bitten, they gave me two weeks of amoxicillin and then said they just didn't know. Keep in mind I lived on the West Coast. Physicians out this way are still undereducated about it, but back then it was unheard of. It took my grandmother reading an article a year later in Family Circle to connect the bullseye rash (not always present) I had to this illness. But even then, it was the hard and fast rule that Lyme wasn't present on the West coast. They sent my Western Blot to the CDC and sure enough.

I had horrible symptoms through my mid-teens. My joints would swell to the point I couldn't walk and the fatigue you mentioned is no joke. At this point, my care is overseen by a rheumatologist. Basically, if it can inflame, it will. It can be pretty frustrating.
My good friend is currently in the hospital with advanced Lyme. She is in bad shape. I'm trying to learn all I can to help guide her and her husband.
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Old 08-11-2017, 08:30 PM
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Lyme's has become far more complicated in the years since I had it. Some are no longer susceptible to doxycycline, some don't even respond to tetracycline. Now we're on to minocycline for our tough cases.
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Old 08-11-2017, 09:11 PM
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Wow. That's amazing. Thanks for sharing your story!!!
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Old 08-12-2017, 06:03 AM
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I have been recently tested came back neg. I have psoriatic arthritis. They were just ruling out everything I guess symptoms are similar. I know a old neighbor who had it and he's been ill for years with it. It's sad that nothing is being done to cure this.
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Old 08-12-2017, 06:58 AM
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Oh, there's been a ton of research! 20 years ago I was part of a vaccine trial for Lyme's. No protective results. They keep trying, testing, working on meds for dogs, horses and people...still nothing particularly helpful. It's a very difficult and deceptive disease.
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Old 08-12-2017, 12:53 PM
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People are seeing benefit from hard-hitting treatment that works to eradicate Lyme and its co-infections. But it looks like a year with a PIC line and basically having your system stripped down to nothing and starting again. It's also not an approved method of treatment. AMA still says basic course of antibiotics is sufficient. It's not, they know it. They're finding evidence of infection in autopsies of "treated" individuals. There have been prosecutions for malpractice against doctors who practice Lyme Literate techniques.

I'm not especially into conspiracy theories, but I do believe that, like the financial ties to incarceration, research funding by pharm companies and having pharm stake holders on the boards that determine appropriate treatment hurts us. A lot of money is to be made in keeping people sick.

There is a documentary called "Under Our Skin" that I think does a good job of discussing that aspect. It will also scare the crap out of any newly diagnosed person, so I do give that caution and the reminder that Lyme affects everyone a little differently.

**didn't know there was a sequel made, but apparently there was. I'll try to give it a watch.

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Old 08-12-2017, 02:54 PM
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Pharm companies who'd LOVE to get something for Lyme's. Love it! They would be dancing little jigs up and down the coastlines and across the country. A vaccine that would need to be re-upped every two or three years would keep them in serious bucks practically forever.
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Old 08-12-2017, 02:59 PM
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I'm not sure of course of treatment yet because it was just discivered. Right now working with a neurologist, infectious disease and I am guessing rheumatologist in the future. They are looking to see if it went to the brain.

The pain is horrible. All muscle spasms, so it is hitting the spinal cord.
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Old 08-12-2017, 05:26 PM
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I'm not sure of course of treatment yet because it was just discivered. Right now working with a neurologist, infectious disease and I am guessing rheumatologist in the future. They are looking to see if it went to the brain.

The pain is horrible. All muscle spasms, so it is hitting the spinal cord.
I'm truly sorry to hear this. It's a very difficult thing to tackle but depending on where you're located there are informed, competent doctors. I certainly have your friend in my thoughts and hope they find a way to ease her pain.
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Old 08-12-2017, 06:01 PM
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Yeah, the reason some doctors and vets are going to minocycline is that it crosses the blood/brain barrier more effectively. Theoretically.
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Old 08-13-2017, 02:52 PM
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I'm truly sorry to hear this. It's a very difficult thing to tackle but depending on where you're located there are informed, competent doctors. I certainly have your friend in my thoughts and hope they find a way to ease her pain.
It is Lyme that cause meningitis. They have a plan now and think it will take 6 weeks for full recovery. Thankfully we have an answer
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