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Some Questions About Lyme


LindaJoy
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Hi, just a few questions about lyme that I've not read.

Can you have lyme for years and years, and have it go in and out of remission?

Can stress or illness make the remissioned lyme come out again, severely?

If you've been on antibiotics on and off for years for other things, such as bronchitis, etc., would these doses cure the lyme if you had it?

Thanks,

Linda

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Oooh, ooh, good questions. Everyone keeps on telling me to be tested for Lyme, too. I was bit by a tick years ago (I mean....YEARS ago) and I've been on antibiotics, even via IV off and on ever since the bite. Is it even possible for me to still have Lyme? I don't want to pay for the dumb blood test if it's impossible for me to even still have Lyme.

Good.....good question. I was going to ask the same thing and in my foggy mind, I forgot. Then I remembered and then, by the time I logged onto the computer, I'd already forgotten what I was doing on the computer in the first place!!!!!!

Rebecca

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I am new to the LYME thing but I do not regret spending the money to be tested. My tests came back and I had bands that were positive and bands that were indeterminate (weak possitive) (on Wester Blot, Igenx lab). Due to this and my doctors clinical diagnosis I am being treated for LYME.

A good link to research and ask questions is lymenet, I am on a diff computer that I usually use and it doesn't have it in my favorites, but I will look and post it later.

I am starting my third month of antibiotic treatment and I have had some of my symptoms lesson and a few almost go away and some still here.

If you in any way feel you might have LYME I urge you to be tested as it can do much damage over the years.

It's advisable to see a doctor who has treated many lyme patients, I personally travel 1 and 1/2 hours to another state to see mine, and I don't regret going that far as he is very knowledeable and understands pots also, as a few of his patients have lyme and pots.

I paid about $300.00 out of pocket for testing and am sending for reimbursement to my insurance co and they say it should be covered.

Take Care

Kim

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But, have you ever been on anitbiotics before? You've been on these for 3 months???? Is that safe??? Is that required?? So, the IV antibiotics I've had for surgeries, etc. wouldn't have treated it? I'm somewhat confused about all this Lyme stuff, to be honest. I don't understand how I could have had something for all these years and not know it and no doctors have known it. It seems a little far fetched to me, but, then again, I think that I've had POTS for at least 16 years and no one ever believed me, so..................

Rebecca

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From what I have been told and have read the LYME bug has many different variations what works on one strain may be ineffective on another. Also LYME has a life cycle of what I believe is 4 weeks, and I think can be treated by antibiotic when it is in a certain stage of it's life cyle. It can also be dormant and return later. YOu are treated with the antibiotic until your symptoms show you are well. I am also sent for a blood test each month to test liver and kidney function to see if any harm is being done. Any sign of irregularitis will be addressed and a change in meds. I had been on antibiotics before for sinus stuff and other things and the thing is I always felt better after treatment and then felt symptoms return. My neighbor has a friend who got lyme 10 years ago and did not know he had it. He recently got tested and got a positive result and has begun treatment. Going without treatment for all that time he has many neurological symptoms and has trouble walking and balance problems that probable will not get better. It's all new to me to and I am constatly reading info to learn what I can. Lyme mimics many things and I never had a doc even bring it up. Only reading others with similar symptoms posts and them saying they tested postive did I search out a lyme literate doc to test me. It doesn;t hurt to get tested and if you find out your negitive you can scrach that off your list of things to check, but if your positive and never go furthur to check it out it can progress. I am glad I got tested.

But, have you ever been on anitbiotics before? You've been on these for 3 months???? Is that safe??? Is that required?? So, the IV antibiotics I've had for surgeries, etc. wouldn't have treated it? I'm somewhat confused about all this Lyme stuff, to be honest. I don't understand how I could have had something for all these years and not know it and no doctors have known it. It seems a little far fetched to me, but, then again, I think that I've had POTS for at least 16 years and no one ever believed me, so..................

Rebecca

http://lymenet.org/

Here is the site that has alot of good info. It has a forum that has alot of info. My doc recommended it but said be careful not to take everything said in the forums as medical truth. But mostly its a great site.

Kim

But, have you ever been on anitbiotics before? You've been on these for 3 months???? Is that safe??? Is that required?? So, the IV antibiotics I've had for surgeries, etc. wouldn't have treated it? I'm somewhat confused about all this Lyme stuff, to be honest. I don't understand how I could have had something for all these years and not know it and no doctors have known it. It seems a little far fetched to me, but, then again, I think that I've had POTS for at least 16 years and no one ever believed me, so..................

Rebecca

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Rebecca,

I just saw your post, and am fading fast, so will have to keep this short.

But, yes, you can have Lyme for a zillion years and be undiagnosed. I was just diagnosed after being very, very sick for 8 years.

Little short courses of antibiotics over the years or for surgery would not kill off the Lyme.

I have promised for a long time now to post an update on my story, and I haven't gottne there yet. But, I really, really need to b/c Lyme is popping up a lot on the site lately.

I do urge you to do a search on this site for 'LYME' in the topic heading. You will find a LOT of threads on this with some extremely knowledgable posts by people like jenn202 and blackbirdsings...both of whom are very Lyme literate and are being treated for Lyme.

Lyme can cause POTS.

That's a very short version!

Kim is also right that Lymenet is full of information.

Hope this helps a little...

Emily

P.S. LindaJoy--stress/trauma is a big trigger for Lyme and perhaps the reason my Gallbladder surgery sent me in the worst tailspin of my 8 years of being sick. I have a great deal of neurological damage and at this point the Lyme has been untreated until just recently.

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I just went to the CDC's website and looked up the number of cases of Lyme per state and it shows that Colorado has like 0-1 (per 100,000 people) every year! That's just about as low as it goes, aye? Then there are states that have like thousands!!! How is that possible? My goodness!!!

Anyway, I'm afraid that my doc will look at my like I've got four heads if I ask for a Lyme test and I tell him that I was bit by a tick when I was in high school!!! Plus, isn't the test (the blot one) really expensive and only done through one company and they don't accept insurance?? I'm flat broke from all the MG testing crap, ie. Athena Diagnostics tests, :) , that came back normal!!! With my luck, the Lyme would be the same way.

Shouldn't I try some POTS treatments first? If it is Lyme, won't the treatments for POTS be ineffective? I'm new to all this and it seems to me that there has to be SOME way to differentiate between Lyme and POTS without an expensive blood test (at least at first.....not to officially DX or anything). Am I wrong? (Probably, huh?)

Rebecca

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I don't have Lyme, and in fact I have somewhat limited knowledge of Lyme, but just so you know...

I don't think that you need to ask your doctor for a blood test on the grounds that you were bitten by a tick so many years ago. I DO think that you should ask if you've got these symptoms that are otherwise unaccounted for. I'm not saying whether you do or don't have it, but lots of us get bitten by ticks and don't know it- I've had plenty of bites that I know about from camping with Girl Scouts, but they could always die or fall off of their own accord unnoticed, too.

Secondly, I *think* that the ticks that transmit Lyme disease prefer the wetter, more temperate climate of the northeast to the dry mountain or grassland area of Colorado. But that doesn't mean that a person couldn't get Lyme in Vermont, return to CO, get bitten by another vector tick, which then bites another person and gives them Lyme.

Thirdly, the bacteria that causes Lyme likes to hide out in places in the body where it might not turn up in a 20 ml blood sample, so lots of people produce false negatives. Even people who've been tested might then test positive years later, which is kind of unfortunate, because by then it'll have had a chance to do more damage.

Fourthly, from what I've heard, Lyme can cause damage to the ANS, and could therefore cause POTS. I think that's the basic understanding around here. However, infections i general can make the heart work harder, so if you've got a more constant tachycardia not brought on by postural changes, it could be from other causes (besides POTS) as well. Also, our meds don't cure us, they just help to manage our symptoms. So treating the symptoms of POTS should be as valuable to a person with POTS caused by Lyme as by anything else.

It seems like when the Lyme cycles to increase its wrath over the body, POTS symptoms may be worsened, as with other illnesses making POTS symptoms worse. But if it's caused damage to the ANS, then treating the Lyme probably won't fix the damage to the ANS.

Anyway, what I guess I'm trying to say is that "differentiating between" POTS and Lyme maybe isn't exactly the step that would help you... I would think that treating POTS symptoms, wherever they come from will benefit you, and if you still think you might have Lyme on top of that, then please talk to your doctor (and maye a Lyme specialist) about it.

Best of luck with everything!!

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Megan-

Thank you soooooooooo much. That is exactly the information that I was looking for (and needing to hear). I know that there is no cure for POTS, but some treatment (besides what I'm already doing) would be amazing.

I don't think that I have Lyme either (just by the occurence rate here in Colorado) and even if I do, like you said, the damage has probably already been done and therefore I need to focus on treating the end result, too (maybe even more so).

Anyway, I just wanted to thank you for taking the time to be so generous with your knowledge and information about the subject.

Rebecca

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No problem,

but I didn't mean that if you've got Lyme, you shouldn't get it treated. Yes, the damage (to the whole body, not just the ANS) will occur more over time, but it'll still continue to get worse, so I just meant that if you have reason to believe that you might have Lyme, then you need to get tested so you can get treated.

Also, even though it's rare in Colorado, there's still that 1 person per 100,000 or whatever, who gets it, so it's not impossible.

There are also other tick-borne illnesses that can thrive in CO, too, though the ones I know of are more immediately life-threatening, rather than chronic.

So I'd still say to talk with a doctor who's familiar with Lyme, tell him or her your symptoms and history, and if he/she says to get tested just to be sure, then go with it. Because the tests might be expensive, but the damage that could occur further down the line would be more expensive.

But, I hope you don't have it, and good luck with the journey.

Take care!

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