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Dale

Lyme Disease

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I just got some of my labs back from dr Stewart and I tested positive for lyme disease I'm calling my dr for an appointment first thing in the morning. The funny part is I could have swore that I've been tested for lyme disease before and it was negative.And whats even more funny is my neighbor who just happens to live right next door to me got sick in 2001, the same year that I did when he was in Florida which is where I lived and where I got sick and diagnosed with chronic fatigue syndrome. Now we live in Pennsylvania and are neighbors. Anyway hes been sick with all the same symptoms as me and finally he found a doctor who treated him with alinia (NITAZOXANIDE). Which is a medication that was primaraly used to treat stomach problems but now its been found to cure Hepatitis C. He was mixing that with doxycycline and taking malaria medication(through shots) for the last two months and he swears he is 100 percent completely cured. He told me that his dr said that alot of his patients have a diagnosis of dysautonomia and its caused by either a virus or bacteria. It breaks the blood brain barrier. Hes been trying to convince me that I have lyme disease since I met him but I wouldnt listen to him.Wow This is crazy. Oh my other blood test is indicating Renovascular hypertension. Anyone know what that is? The test was Renin activity plasma which was out of range (high.)

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Hey- congrats on a DX. Sounds a bit strange I know, but each piece of the puzzle gets you one step closer to an effective treatment. I will be keeping my fingers crossed for ya!

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As scary as it may seem (or not) its good to get a NAME to the monster!!

Now who will treat you and will you get the same meds as your friend?

How do you know about the cure for Hep C??..that is a miracle.

Take good care and let us know how it goes.

Warmly, Jan

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I know about the hepatitis C because my neighbors doctor is one of the doctors doing the trial of alinia for hepatitis C he found that its not only curing hepatitis C but its helping aids patients improve there liver function and now its curing lyme disease and chronic parasite infections. The only bad part about it is hes not accepting new patients so I need to try to find a doctor who either knows how to treat lyme disease or try to convince my doctor to put me on the 3 meds that cured my neighbor. When I first got sick I suspected lyme disease but I had a negative lyme test done so I ruled it out. Now im reading about it online and most people do test negative for it at first and it sometimes shows up later and doctors are supposed to use a clinical evaluation to diagnose it based on symptoms and history instead of lab results due to the high amount of false negatives. Their so quick to rule out lyme disease and give someone a wastebasket diagnosis like chronic fatigue syndrome. I just hope this works for me because im sick and tired of being sick and tired!

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Very exciting, Dale, and goes hand in hand with info we just received at Hopkins. They are not even bothering to test my son for Lyme- as getting a positive DX is so iffy- whether one is or not. It depends what cycle of infestation you are at & what type of test is used, and who is interpreting it, etc. I strongly recomend that you get to a lyme doc (yes, there is such a specialty!) for treatment. Kudos to Dr. Stewart for finding the cause of your dysautonomia!!! I pray you find a 100% cure.

Very curious as to WHO is treating your neighbor and WHAT he is DXed with. My son has taken Alinia several times for GI bacterial overgrowths. He's felt dramatically better after each round. I take doxycycline daily to control rosecea, but it's helped my dysautonomia too. So exciting to see this new info.

Julie

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Dale, My husband, my mother, and my dog have all had lyme. This could be very good news for your because you could be completely cured. Lyme can cause all of your problems and more. My husband even dealt with paralysis. Anyway I know that all three of them (Hubby, Mom, and dog) took Doxycycline for 4 weeks. You have to take it that long for Lyme. I urge you to get this antibiotic asap. In week you might even feel healthy... but after you take it for 4 weeks you should get rechecked in a few months to make sure the infection is totally cleared. Good luck but don't delay you need to star on this med as soon as you can.

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I hope treatable Lyme ends up being the case for many, could help a lot of folks. Seems like screening for Lyme should be standard procedure for POTS patients (not that there is a standard)! There just as well could be other little buggers floating around that don't happen to have diagnostics tests available (and the Lyme test can give false negatives, too).

Coincidentally, before even learning of POTS, I did a month of Doxycycline out of personal concern for leptospirosis exposure (unlikely, but I was feeling extra horrible and wanted to eliminate that possibility after potential exposure on a hike). During that time, the nurse would gasp at my vitals... she even doubted and double checked her equipment! Anyway, depending on the doc, they are not overly stingy with Doxycycline and it's even used prophylactically some times (that doc was an adventurer and did this himself, so he was more inclined to entertain my concern)! I may have had a mild help from it (nothing dramatic for me), but my symptoms wax and wane so I never really know what is helping or hurting specifically. I might try it (or another antibiotic) again if I can, now that I know more about POTS and what to look for symptom wise (but my case may be the central brain trunk variety).

I will bring up Lyme test with my doc. Is it something you have to "fight" to get tested for?

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I thought the consensus was that chronic Lyme resulted from an autoimmune or auto inflammatory response to the infestation rather than from the infestation itself - thus it can result in neurological disease long after the initial infestation has gone. Either way, hope it works out for you, but there is some speculation about some of that stuff.

Did Dr Stewart actually diagnose you with Lyme and did he tell you it was the cause of your problems and POTS? I would go with what ever he says to you. His knowledge is second to none.

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Thank you all for your support! If this is the cause of my problems i'll do whatever it takes to make it public knowledge even if I have to contact my local news station. More research needs done reguarding lyme and dysautonomia. My neighbor was diagnosed with all kinds of stuff like chronic fatigue fibromylagia he had brain lesions...His dr said it was all comming from either lyme disease malaria or some sort of parasite infection it didnt matter which one because the treatment is pretty much the same. He even treats people when their labs are negative based on history and symptoms plus he runs a very significant lab work up which provides evidence and indicators of infection. I hope this helps us. Most doctors will test you for lyme but if its negative they'll dismiss it completely oblivious to the fact that most people that have it do test negative untill sometimes later on in life when you build enough antibodies.They just dont know what their looking for. You have to find a specialist. All I know is once it breaks the blood brain barrier its literally impossible to find. It hides very well in your body while damaging everything especially the central nervous system! I will get the name of his doctor and post it on here soon for those of you who maybe interested. K I wish all of you the best and your all in my prayers! Some day we will over come this and be healthy again! Never give up hope!!!!

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Dale -

I sometimes wonder about Lyme because it can be dormant for a long time - and I lived in the Midwest most of my life and have had ticks!

Did you got to a Lyme Specialist? I called two offices in my area and they don't take insurance and it's $1000 for a visit. ;)

How do you go about treating/testing for Lyme if you can't afford a specialist? I think it's so bizarre these physicians don't take a PPO!

Thanks!

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While we are on the subject.......

I just looked at my 2000 results to B. Burgdorferi. It was positive, but the western blot did not produce positive in the necessary bands?

Could I have chronic lyme? I'm going to ask my doctor to retest as well.

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Sorry guys but I'm not understanding this issue. Are you stating that people who have pots got it from lyme disease and if we take the meds that you describe our pots will go away? I live in Florida and thats when I started feeling sick and received my dx. Could someone please explain this in a more simple term?

Maggie

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That seems to be what Dale has learned from Dr. Stewart. I hope he elaborates for us. I recently posted in a different thread about the fact that my son's doctor, Peter Rowe at Johns Hopkins is planning to treat Mack for lyme regardless of any test results. This is the kicker. He actually suspects that lyme is NOT behind Mack's symptoms because of his severe GI stuff as an infant. BUT, he's been seeing many of his patients improve on an antibiotic regimen. He says he's not sure WHY at this point. He thinks there may be another infection, parasite, or even inflammation at play that they currently don't know how to test for. The fact that after antibiotics, his patients improve.... speaks volumes. He thinks it's worth a try.

Mack will start his regimen in a few weeks. He'll take minocycline, 200mg (I think) daily for ? amout of time. I'll pass along more info as I get it. If anyone else is trying this, I'd love to hear your results. I take a small dose of the same family of antibiotics, doxycycline, daily and also feel much better with it. It was initially prescribed for rosecea, but I love it so much I've stayed on it for months now despite the fact that my face is clear.

Julie

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Sorry it took so long for me to respond I've been really feeling under the weather to say the least. Dr Stewart did test me for lyme it showed positive antibodies but the bands are still pending. He is not my dr I just participated in some of his research so he wont discuss anything with me. He just sends his findings to my primary care physican who hasnt received the rest of my labs yet which is a joke anyway because he knows nothing about POTS or CFS he couldnt even interpit the letter from dr Stewart and to make matters worse hes one of many doctors who think that when you get lyme disease it usually clears up within a month or two which is why you have to pay over a thousand dollars to see a lyme specalist because insurance companies wont cover them because they dont believe in chronic lyme infections. all I know is that lyme disease hides very well in the human body and most people that have it actually test negative. it is usually a clinical diagnosis. I also know that it causes dysautonomia along with many other disorders.

I had an appointment today with my dr who tryed convincing me that pots is an anxiety disorder so I wont be seeing him anymore. I dont have money to see a lyme spealist but I am seeing dr goodkin in philly on the 31st. Hes a pots specialist and I will discuss the issue with him and hopefully he can shed some light on the better because im just as confused as many of you. Ill post an update after my appoint in philly.

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I'm going in to talk to my new PCP about a Lyme Disease Test. I think the 'basic' one isn't that costly and see how it goes. I have to see hom about the flu shots anyway so I have a reason to be going so he doesn't think I'm begging for testing.

Now...the theory of LT antibiotics helping is interesting. Who is to know if there aren't other bacterial infections like Lyme Disease? I'm pretty sure my hard-core POTS came on a couple months after a flight, then a horrible flu...so it's reasonable this could help some people. It is SO DIFFICULT to get LT antibiotics prescribed but I'd take the risk, I think, at least for a month or two to see if it helps.

For those of us who are otherwise pretty healthy except for POTS (as my doctor says, at least, minus the out of shape stuff)...what is the big risk with a 60 day regimen of antibiotics?

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I'm really not understanding this issue. I have pots but did not get it from lyme disease, if I took these meds would my pots get better also?

Maggie

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