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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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Old 09-20-2018, 11:26 PM
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Thank you so much for directing me to this thread. I have chronic Lyme, and my son and I probably contracted it in 2004. I was just diagnosed about 3 years ago, so it’s gone untreated for over a decade. There was no bullseye, but I currently have a textbook case with the arthritis, etc.

So far, I’ve been treated with antibiotic pulsing, ozone chamber therapy three times weekly, samento drops, cumanda drops, and I’m supposed to start mora drops. Long term antibiotics have not had a lasting effect on me, and my body stopped tolerating them after about 9 months. The borreliosis came right back, but I don’t think the babesia did. I had a MAJOR herx on samento where I actually thought I was dying in December of 2017. I’ve learned to take treatment much more slowly and to really detox when I’m treating. I am not treating currently (holding off on the mora) because my son was sent to jail in mid August. I think the stress and treating would probably send me to the hospital right now.

I also think I’m genetically pre-disposed to chronic inflammation, so I’ve got a double whammy... genetics and Lyme. I think genes have a lot to do with how badly some people’s bodies deal with Lyme, and obviously I have the chronic form which doesn’t help. I’m hoping to alleviate symptoms and stop my downhill progression rather than cure the disease because I don’t think it’s possible to eradicate it completely in my body at this time. It’s set up camp, then traveled, and built castles. I think it would take something really amazing to break down the fortifications at this point.

My LLMD believes that my son also has Lyme & co and that it has caused his impulsive, erratic behavior leading to his arrest and needs to be treated. He is willing to do whatever we need, even testify, if we think it will help our son. I think the best I can hope for is to get some treatment court-ordered for him. At the very least I’m hoping he’ll stop feeling suicidal.

Does anyone have any suggestions about how to convince people who are completely ignorant of this disease to allow treatment in jail? The lawyer doesn’t believe that a Lyme diagnosis will help my son’s case at all, so that part is out. To me that seems absolutely ridiculous, but I’m probably one of the most informed people besides my doctor about Lyme in my state.

Also, should we bother to treat if he has to be eating food that will feed the Lyme? My doctor is convinced that treatment doesn’t work unless you follow a strict diet, and that won’t be possible in jail. Should I push for antibiotics and a probiotic? My LLMD really believes herbal remedies are best, but he let me try antibiotics as long as I wanted. He is a great guy and willing to work with me on anything. Should I just wait and hopefully my son will be out in a few years?

What do you think? Again, even if we come up with a great plan, I’m not even sure I’ll be able to get a judge or the jail to cooperate.

I really wish I had the money to get some of the east coast experts to weigh in. That would probably take millions, but at least they have some clout. I have daydreams of these doctors coming to our rescue and taking this Lyme battle to the national stage. A girl can dream.
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Old 09-20-2018, 11:29 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.

Ok, have you noticed that vets are so much more informed about Lyme than most doctors? What is the deal with that? I go into my vetís office, and thereís a huge poster on the wall about Lyme. They know all about it.

Do you think this is about Wormser and the CDC group? I just donít get how vets would take this seriously and mainstream doctors wouldnít.
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Old 09-20-2018, 11:34 PM
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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.
Do you mind updating us on your health? Iím worried that you still may have Lyme even with a negative test result. According to my doctor, MOST patients end up with negative test results even though they are clearly infected.

Iím sorry this is such a late response. Iíve just recently joined this forum and am investigating how Lyme has been affecting my sonís behavior.
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Old 09-20-2018, 11:45 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.

I have to tell you that this cracks me up. Being a horse person myself, I know SO MANY people who treat themselves with horse meds! Some people would just be appalled by that which I think is funny too! To me it makes perfect sense. My brother is a farrier and my dad was a doctor, and they used to work together on horses all of the time even though my dad had no vet training. He was a good horseman though! I donít think he would have had a problem using horse meds on himself or us, though he might have gotten hit with a malpractice suit if he had tried it on his patients!

I canít think of the product now, but I used to use a spray shine for horses on my hair when I wanted it to look healthy... show sheen I think? I also thought it was funny when Mane and Tail started being marketed for humans!

Iím so glad youíre still able to ride. I havenít been able to ride for a number of years, but we just finally sold the horses a few months ago. It breaks my heart to have the pasture empty. Even when I was stuck on the couch, I could still see them out my window. I wish someone would board some horses here, but theyíd have to be responsible for everything. Thereís no way Iím mending any fences or shoveling stalls in my current situation.

Sorry... got off topic there for a minute!
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Old 09-21-2018, 12:00 AM
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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.
Here are my thoughts on people who believe theyíre cured or are symptom free after having chronic Lyme.

I do not believe chronic Lyme is actually a curable disease at the moment. I do believe that many people who had it and are in remission have REALLY good genes and immune systems. I do not.

I also believe that many people who believe theyíve been cured of their chronic Lyme are going to be severely disappointed when some major traumatic event hits and their immune system is weakened. Iíve heard this story far too many times in the Lyme forums, and itís heartbreaking. My doctor informed me when I was going into my long term antibiotic treatment that I would probably feel great for a while but that things would go downhill and that my body would eventually have to take a rest from them. Then the Lyme would come back with a vengeance. Thatís exactly what happened to me. I was so glad he had prepared me for that because I would have been devastated if I had thought it was a long term cure.

I also would not have been able to afford the antibiotics if I hadnít had good insurance. Thereís no way I could have attempted that treatment at that time without insurance paying for it.

My husband has a very strong immune system, and I believe heís living with chronic Lyme and still functioning pretty well. He thinks he probably has it too, but he doesnít want to treat because it hasnít changed his quality of life that much. He gets tired pretty easily, and heís starting to get arthritis in his hips, but nothing has been bad enough for him to want to go to the trouble of treating. I pray that it never gets worse, but I still wish he would treat to prevent bad things from happening. I really donít think heís willing to change his diet either, and he knows that would probably have to be part of the treatment. I just have to let him decide for himself.

My son, on the other hand, desperately needs treatment as you obviously know.


Iím impatiently waiting for a cure.
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Old 09-24-2018, 09:17 AM
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I also believe that many people who believe theyíve been cured of their chronic Lyme are going to be severely disappointed when some major traumatic event hits and their immune system is weakened. Iíve heard this story far too many times in the Lyme forums, and itís heartbreaking.
I've seen this as well. I had a good stretch of relatively low-symptoms and thought that perhaps it had done what it was going to do and I could put it in the past. But as you said, stress and trauma has woken the beast the last few years. It's hugely frustrating.

Also got my labs this morning for Valley Fever-- positive. Not sure how or if this will complicate things in the long run. It explains the "sudden" presence of pulmonary issues, though. Here we go again! lol *sigh*
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Old 09-24-2018, 10:57 AM
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Do you mind updating us on your health? Iím worried that you still may have Lyme even with a negative test result. According to my doctor, MOST patients end up with negative test results even though they are clearly infected.

Iím sorry this is such a late response. Iíve just recently joined this forum and am investigating how Lyme has been affecting my sonís behavior.
No I've been tested over and over I have diabetes, psoriatic arthritis, high blood pressure, and a bunch of stomach and intestinal issues. Thankfully no lyme.
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