Wondering About Lyme ???

[AllAboutPeace]

I'm trying to figure out whether this is something I should pursue or not...

About 8 weeks before I had my sudden onset of POTS, I was on a wooded walking trail when I was on vacation. There have been no known cases of ticks infected with lyme in the immediate area I was in; however, there are known cases of it within an hour all around this area. The known cases have been spreading rapidly within this region as well. I didn't notice a tick on me, nor did I have the trademark bull's-eye rash. When I researched it, the experts seem to say that less than 50% (some say 30%) of people infected with lyme, are ever even aware that they had a tick on them or saw a rash.

I also read that the test for lyme is notoriously inaccurate - showing false positives as well as false negatives.

The symptoms for lyme overlap heavily with POTS. This link shows symptoms and states that anyone who has 20 of these symptoms should be investigated for lyme. http://www.canlyme.com/.

When I mentioned this to my internist he told me that they just don't test people randomly for lyme. He also mentioned that the results are not accurrate and therefore he wouldn't do it.

I agree that it's unlikely...but I had no precipitating event for POTS at all. I have had no previous health issues, no virus, no trauma or accident, etc.

Any info or experience with this??? The postural changes are definitely POTS and not lyme, but can lyme cause POTS or does the overlap of symptoms just cause confusion between the two?

[issie]

I'm not sure. Since I feel I've had POTS most of my life and there are other things that contribute to my POTS - I'm not thinking that the tick I got in my 30's made a huge difference in how I felt, but I have wondered if that was when things seemed to get worse for me. I don't think I've ever been checked for it.

But, I do know there have been some on this site that have been bitten and do have Lyme's and there is a connection with that and their POTS. A couple of guys that don't post any more both had Lymes and POTS. I've been trying to get a hold of one of the guys - because, last time I spoke with him - he was really sick (about a year ago). So, hoping he's okay and just not posting. I know some girls on here also that have had Lymes. Maybe, they will talk about their experiences and whether or not they think it either caused or made their POTS worse.

Issie

[Katybug]

They have started to find that Lyme patients develop POTS during the disease process. Its not that surprising given the jont pain and fatigue that Lyme can cause which often causes people to be layed up for quite a while. Additionally, Lyme spirochetes can cross the blood-brain barrier (which most bacteria does not) and so it affects the nervous system in ways many bacteria do not.

[HopeSprings]

Yes, I've thought about this a lot. The symptoms sure do overlap. I had two tick bites the summer before many symptoms began. I have tested negative for Lyme - well "indeterminate" - positive on some bands, but not enough. The testing may not be totally accurate, with lots of false negatives, BUT I don't understand why the Dr. wouldn't test to see if you do get a positive??

[skiberthoud]

I've also looked into this as a possiblity for myself. Lyme can effect most every system in your body, including your ANS, so it isn't uncommon for those with Lyme to also have ANS issues including POTS (just like on this forum there are those with POTS and Lyme, on Lyme forums there are threads for those with POTS). Since POTS is simply a syndrome, then you should expect a doctor to look for a precipitating factor, so to not be willing to do a Lyme test doesn't seem reasonable. That being said, testing can be tricky. There are only a few labs that have decent accuracy with results, and those tests can be costly and not all docs use those labs (Lyme is such a political mess). The tests alone can not diagnose Lyme. A Lyme Literate Doctor needs to read results and take history and exam to make a diagnosis.

[kmichaelson]

I actually just had a positive result for a lyme test, but I've had POTS symptoms for years before this, so I don't know if lyme could be the cause in my case. However, I have read of people who say they developed POTS due to Lyme. I don't know it there's really data on this--I've just seen people who say that's how it happened for them.

I have to be retested and then see my doctor again, so I'll definitely be asking questions about how this all figures into POTS!

[bellgirl]

I was tested, but negative....but my husband just pulled a tick off of me the other day, and I had a red raised area, but no bull's eye with a ring around it, so I think I'm Ok We literally live in the woods.

[Katybug]

kimbellgirl - You should get tested 5-10 days after the bite. It is believed that only 30 -50 % of people that are infected with Lyme ever show any rash at all, let alone the bulls-eye. If you know you have had a bite and are in an area known to have Lyme cases (which is most of the US at this point), it really is wise to have the test. And, since you have POTS and Lyme symptoms overlap with POTS symptoms, only testing will ever let you know if you are infected. The testing is sketchy too but at least the positive tests are usually accurate...it's the negative tests that are usually suspect. I promise you, you do not want to have undiagnosed tick-borne illness on top of POTS. The tick borne illness seems to have been the tipping point for me. It went undiagnosed for a little over 6 mos. from the point when I started noticing strange symptoms. If it had been caught sooner, I may not have ever gotten as sick as I did/am. We will never know as it seems I also have some underlying issues but I definitely wasn't on the disabled list until after the Babesiosis and Lyme.

[AllAboutPeace]

Kim,

Do you think it's possible the tick bite could have something to do with your new symptoms (uneven pupils; crawling feeling on your head)?

[MomtoGiuliana]

AllAboutPeace

I am not by any means a Lyme expert and the issue is controversial. But I will just say that I live in an area that has a lot of Lyme disease. I have at least a dozen friends who have had Lyme and know of dozens more. Some unfortunately were not diagnosed until 2nd stage.

Of all of them I do not know of any of them developing POTS. And definitely not within 8 weeks of a bite. The first stage symptoms are typically a rash (but not everyone gets a rash), fever, and severe fatigue and muscle and joint pain. Neurological symptoms show up in the 2nd stage if the first stage is not treated or effectively fought off by the body, but this is several months later. The neurological symptoms my friends have had have been Bell's palsy, tingling sensations and memory problems.

That said, if you have been bitten, most conventional wisdom these days says you should get tested, and definitely if you have any symptoms. Keep in mind that ticks also carry other diseases, unfortunately. At the same time, I would not freak out. I have been bitten and of course so have many others, without development of disease.

[AllAboutPeace]

Thank you everyone for your responses! I had no idea how controversial lyme disease was until I saw my doc's reaction to what I thought was a request for a simple blood test. Apparently, many docs in Canada wont even touch it, and patients are forced to seek treatment in the US.

MomtoGiuliana,

Thank you so much for that information!

I wasn't able to find any timelines at all for the symptoms/stages, so I really appreciate you passing on the knowledge you have about it. Looking at the list of symptoms alone isn't very helpful because there is such a big overlap with POTS. My 'gut' tells me I don't have it, but I've been getting quite a bit of pressure from family, friends to get tested to rule it out (even though I have explained the potential for inaccuracy of results).

[bellgirl]

I sure hope not, AllAboutPeace, but I've felt pretty good the last week...no fever, joint pain, and I have more energy than I have had in awhile, because of my massive dose of Vitamin D, so I think I'm Ok...Just a few more days on increased dose than back on maintenance...Thanks for your concern!! No other stroke symptoms, btw, either Just dysautonomia weirdness, I suppose

Thanks Katybug, I know what to look for, too, so I am very aware of Lyme here living in the foothills of the Appalachians!! So sorry you are dealing with so many symptoms. My sister in law has a friend with lymes, and she has other issues, as well, and has suffered a lot. Prayers to all...

Thanks to to MomtoGuiliana for all the tips, too!

[Katybug]

AllAboutPeace,

Here's a good website for Lyme info:

http://www.ilads.org/

[sue1234]

Twenty years ago I came back from a trip in the country and had a tick on me. It had a white spot on its back, so the next day I went to my local GP and told him about it. He said I didn't have anything to worry about. I believed him, because even though I was familiar with Lyme, I am in the very South and had not heard of any Lyme down here. This was all 15 years pre-POTS, but around the time I developed anxiety and hypoglycemia. I don't think I got Lyme, but, you never know what I might have gotten---as in something that is not familiar. So long ago for me and I'll never know.

[Darlene]

I became sick after coming back from Niagara Falls. Dr. Grubb tested me for Lyme. The ELISA was positive, and the western blot was negative. He sent me to an endocrinologist. He said he didn't think I had it.

[RichGotsPots]

i put yes but my test came back neg. they treated me because of the bullseye

[HopeSprings]

I don't think I got Lyme, but, you never know what I might have gotten---as in something that is not familiar.

This reminds me there are also other infections associated with ticks. Katybug was positive for one, right? The infectious disease Dr. tested me for them - no other Dr. had done that before. All was negative, but just wanted to mention this.

[runningshoe]

Two years of Lyme treatment....using less medication for POTS but definitely not better...YET.

[RichGotsPots]

I wanted to get the co-infection tests and wouldnt you know it the only doc i think is credible to test for it around me, canceled all his visits the day before my visit and isnt rescheduling

[Annaliese]

So rich did your pots start after your tick bite? Ie do you think lyme caused your pots?

[RichGotsPots]

It's hard to say if Lyme caused my pots. I didn't get pots immediately afterward. I got Lyme bite in 2004/2005 and got pos 12-16 months later. Also btwn 2005 and 2006 i started getting back in shape and had hardly no problem biking long distance and fast for many months. But I think the Lyme or co-infection might have contributed because in 2006 I got severe food poisoning and a stomach virus and also paint my basement with toxic heavy duty paint. So I think one of those damaged my nervous system and Lyme might have weakened my defenses enough to allow that...

[ramakentesh]

I think the whole Lyme thing is very equivocal.

[issie]

I think there are many protozoa and co-infections that consists of bacteria, parasites, fungals etc. and some of them live in a bio-film that protects them in our system. Our immune system may not detect them and they can proliferate and cause all sorts of issues. If you research some of these different organisms you find that they could possibly cause issues seemingly similiar to our POTS symptoms. Not only can they cause some of these symptoms - they can trigger issues with the autoimmune system and cause dysfunction in it. So, do I think it's possible ---MOST DEFINIETLY. (We all have parasites in/on our body. It's when the immune system doesn't trigger and protect us from them and they are allowed to proliferate ---that we have problems.)

I think we have to be open minded enough about the possibility of an issue. If the organism is in our body, and we can eliminate it, possibly create more harmony within our body and less issues with autoimmune related issues - we will be much further ahead in our recovery.

I did not test positive for Lyme but I did for co-infection and another protozoa called FL 1953. It is really hard to get a positive reading for Lyme ---so I read ---but, that doesn't mean that it's not an issue for some. And from what I'm reading not all people have the bulls-eye rash. Some people test positive for it and never even knew they have been bit. So, it's not something I'd totally dismiss - if it seems like it might fit.

Issie

[ramakentesh]

hahah. So you keep remind me!

[issie]

hahah. So you keep remind me!

Keep on smiling- and keep that open mind-------- will you!

Issie