Lyme disease and POTS

[DancingLight]

Jenn,

A HUNDRED THANKS FOR THAT!

i just decided to cut and paste your post and create new topic, so that for future reference if someone goes looking for a post on Lyme, this will come up quickly, b/c after all that work you did...well, it's a great informative post that hopefully will be more likely to be seen this way.

i really appreciate you typing that all out.

i did not realize until just the other day how complicated Lyme testing was...i thought when i had the little Lyme titre done or whatever early on that was that. it's absolutely fascinating to me how difficult and mysterious it is to get this illness diagnosed. i also did not realize the overlap with POTS until i had seen one of your earlier posts a while back.

do you remember having a tick bite? i don't' have any memory of one.

how do some of the symtpoms differ from you POTS? or don't they?

can you pinpoint a time when the Lyme started vs. the POTS?

just wondering...

also anyone else who has tips or experience with Lyme, let me know

i am so grateful that finally after all of that searching you found treatment that has returned so much of your functioning...thank goodness for answers finally!

thanks again, i really appreciate it, as i know how hard it is to type all this stuff out...

emily

Hi emily - It is funny how we all seem to connect there on different topics... I think thats what is so great about this forum!

I have gotten so much information that has changed my life

I would be happy to share information and my personal experience with Lyme.....

I became ill in 1993.... Too many symptoms too mention but mainly severe fatigue, muscle weakness, problems with coordination, heart palps, dizzyness, trembling, Cognitive problems, fevers, headaches, numbness ..... Etc....

I went to tons of Dr's at the time and nothing showed on any tests... I was diagnosed with CFS, and told I was just depressed and it would get better. I had Lyme tests at the time that would come back either negative or as they put it "boarderline positive" Like there is such a thing!

It didnt get better, for the next 4 years I got worse and worse... I was so ill and weak I could not lift my head off the pillow. I was nonfunctional and bedridden.... I sought out more Dr's with no answers, and many alternative health practitioners who could not help.

It wasnt until 1997, that they ran another Lyme test...It came back VERY positive.

From then until now I have been on Lyme treatment. I have hit some road blocks along the way with Bad Lyme Dr's and not the right treatment which hindered my progress. ABout 3 years ago I found a great Lyme Dr and got on the right combination of abx which slowly but surely worked... I have gotten better and better.... I can say I am about 80% functional now. And many of my symptoms are completely gone or mild.

In the wake of all this I was diagnosed with dysautonomia... Which was caused by the Lyme Disease. I was also just diagnosed with hypermobility By Dr Grubb as well. All these things contribuited to this dysautonomic like conditon.

Dr Grubb is pretty positive that with continued treatment that I will start to reverse the dysautonomia.... He has about 30 patients with Lyme that triggered this condition and he said those have the best chane of recovery b/c it is still a treatable condition,

Treating the source of the dysautonomia is the best thing you can do. Although there are times when this is not possible such as if it was triggered by a virus, or is genetic....

The biggest problem I have is tolerating the higher doses of abx, b/c of med sensitivities..... As You know its hard for anyone with dysautonomia to take an antibiotic, and for people with Lyme as the cause it is the thing they have to take.

Bottom line is that abx have saved my life, and I am so thankful for the progress I have made.

Lyme is a debilitaing disease that left untreated can wreck havoc...

ABout testing: Its very hard to go by any of the testing available to tell you whether you actually have Lyme Disease... The tests are not accurate...

when you have the Lyme bacteria in you for a long time your own body stops making antibodies to it b.c it views the Lyme as part of the body... This makes any blood test irrelevant. There are specialized tests that if sent to the right Labs have a better chance of showing up such as a PCR or FISH test.

I was lucky I got some positive tests,,,as well as Positive tests for babesiosis, erlichiosis, and bartonella, which are coinfections that more people than not have along with the Lyme. Those also need to be treated to make a full recovery.

Most of the good Lyme Dr's are here in the Northeast. What makes it difficult is that most mainstream Dr;s do not understand the complexities of the Disease and go by testing alone, and not symptoms..... ANd even if they do decide to treat the person for Lyme they di not out them on the right disage, combo of abx as well as not wanting to keep them on it for long term.

www.lymenet.org is a good website to go to that can help give you info on Lyem disease, and also info on Dr's.....

Let me know if I can help in any way,

Maybe I should have made a separate post for this since it is so lengthy.....!

Anyway, I hope this could help you a little ......

[Jenn202]

Hi Emily - Thanks for posting this on a separate topic.. I am computer illiterate in that respect! LOL

I grew up around 14 acres of land as a kid... I remember having numerous ticks taken off me....

I have learned that Lyme disease can Lie dormant, and your immune system can keep it in check , and it can come out later with a stressor to the body either physically or mentally....

AT the time I got sick I was working about 50 hours a week, and had quite a bit going on in my life..... So I am not sure if was bit again in this time period or if it was just the disease surfacing from the childhood bites.

Also the tick that transmittes Lyme is the size of a poppy seed, so it is VERY easily missed. Also only 40% get the classic bullseye rash which makes it more tricky since mainstrean Dr's seem to like to go by only that piece of info.

As far as being able to tell POTS from Lyme... Its so difficult b.c the symptoms can be SO much alike...

For me, as I got further along in my Lyme treatment, and had resolution of many of my symptoms, it made it easier to see what was doing what.

I would say that 90% of my problem right now is POTS related.

My next goal is be able to up my Lyme treatment..... I leave for Mayo next week so hopefully I will get some confirmation from my Grubb Appt....

Have you ever had a tick bite that you remembered?

Again thanks for reposting this!!

Have a Good night

[ethansmom]

I was diagnosed with POTS 3.5 years ago by a cardiologist who beleived that the onset may have been viral in nature, but he was never interested in pursuing any further testing. Initial tests for Lyme came back negative of course. The POTS improved over the last few years, but my fatigue has gotten worse and continues to do so. I kept having viral like falre ups where I would feel achy, weak, and tired for days at a time- which really made me think my illness must be autoimmune in nature. When I moved to Florida last summer, I talked to someone I knew that had been diagnosed with Lyme disease and she referred me to her doctor- an internal medicine doc with a specialty in chronic fatigue, Lyme, and autoimmune illnesses. After one simple blood test (well, one visit to the lab for multiple tests!) he confirmed that I did test borderline positive with the specialized testing, and it indicated that Lyme has been in my system for a number of years. He beleives that is the cause of the onset of POTS, CFS, and chronic candida infection, and the outlook is very good. I was pregnant when he performed the test, which can alter the results, so I am going to be going back this summer after my baby is born to be retested and treated if neccesary. My children will also need to be tested, as it usually does pass from mother to child- I had no idea that I had Lyme or I would have definitely been treated first. However, so far everyone seems to be developing normally. Mine is a very mild case compared to others I have talked to, but it continues to fascinate me that our medical community hasn't recognized this much more than POTS.

I don't ever remember having a tick bite either, but did spend a lot of time outdoors and certainly had ticks on me several times as a child and teenager. I hope we can continue to get more info on this topic!!

[Jenn202]

Hi Jessica - I didnt realize you had tested positive for Lyme Disease..... Definetly get treatment for it... I cannot stress this enough, and have your children tested periodically as well. Isnt it just great to have 2 misunderstood diseases?!?!?! It gets so frustrating.

I wish that mainstream Dr's would get more educated on how aweful Lyme is, and understand that most people with Chronic Lyme need long term treatment.

DId he test you for coinfections also? I would definetly get tested for these as well since they usually go hand in hand. Also if your POTS is brought about by Lyme Disease then you have a chance at getting much better from that also!

E mail me anytime if you have questions..I would be more than happy to help

I wish you a safe and healthy delivery...

[MomtoGiuliana]

I have had many tick bites and have been treated once for Lyme, following a rash and fever. The blood test came back negative, however, and my doctor at the time told me this meant I did not have Lyme. However, he had already put me on a two week course of antibiotics, which I finished. When POTS cropped up in 2002/2003, I saw a neurologist who ordered the Western Blot test, and this came back borderline--3 positives out of 8, if that makes any sense. She and my gp felt this did not warrant treatment, it only showed that I had exposure in the past, according to them.

Funny this topic comes up now, as I am going to my gp this afternoon with a tick bite that appears this morning to have a bullseye rash--it is a faint circle about 2 inches in diameter around the bite. I have no idea what he will do.

I have many friends here on the eastern shore who have had Lyme. Most got well again after antibiotic treatment, even those who had 2nd stage Lyme with neurological involvement. I only have one friend who has continued problems with it, following treatment.

So, that's my story.

Katherine

[Jenn202]

Hi Katherine - I cannot tell you how important it is to get treated right away for this new Bite...... Also its important that you get the right treatment, and find out if you have any coinfections as well since these are separate illnesses transmitted by the tick that need to be treated separately....

Lyme Disease when treated right away and treated correctly...which means a minimum of 1 month of an abx such a doxicyclene, will usually take care of it, but if symptoms continue then I would definetly seek out more treatment and a Lyme literate Dr who understands more about Lyme and the different treatments.

Please do not think that I am trying to be alarming..... But Lyme causing permanent neurological problems like POTS can be avoided if it is found and taken care of.

If I had any of this information years ago I most likely would not even be on this board today..I would be healthy and living life.

Take Care.

[Jenn202]

One thing I forgot to add out of respect to this wonderful forum:

This is my personal experience with Lyme Disease.

When I speak about treatments etc...I am speaking from years of research of information given to me by Dr's, my own reserach as well as other patients.......

BUT I am not a Dr myself and in no way intend to try and diagnose anyone when I give advise for Lyme....

I would advise anyone who thinks that they could have Lyme or want to explore it futher to seek a dr's opinion. They know more about your health than anyone.

[MomtoGiuliana]

Thanks Jenn for your concern and your thoughts. I don't know much about Lyme, except the experiences that I described, and that I know there are a lot of opinions out there--some medical some quasi-medical about how to diagnose and treat it. The neurologist I saw two years ago had a lot of experience with diagnosis and treatment, so I greatly relied on her expertise. I have one friend whom I respect, who has suffered from Lyme repeatedly (due to repeated exposure--his work involves a lot of field work in the woods), recommended a physician to me ( I guess he's a physician) for a second opinion. I got suspicious though when this physician's secretary informed me that it would be $600 for a consultation and that they didn't accept insurance. Later I read that his practices were under-going scrutiny. Apparently he was diagnosing nearly every patient he saw with Lyme Disease, using questionable urine and other tests, and putting them on long courses of antibiotics, at great expense and probably unecessarily.

Unfortunately with conditions like Lyme that can be variable, and there is still not enough known--and POTS--there are people out there who will take advantage of that vacuum and make a living defrauding ill patients. So, unfortunately, if we do have these conditions, or think we do, we need to be extremely well-informed to make sure we are getting the best possible care--particularly when seeking non-traditional healing, or physicians who are off the beaten path. I ran into this problem with POTS as well, btw. Before I was diagnosed, I went to a homeopath out of desperation. She was certain of her diagnosis and her suggested remedies. They were expensive, did absolutely nothing for me, and one was dangerous, and I am glad I did research and talked to my doctor and didn't use it.

OK, I am off my soap box, and on to my appointment regarding this darn tick bite. ugh.

Katherine

[Guest tearose]

Hi all, another topic that makes me have to work really hard to explain my experience....there is so much the medical field is still discovering! So, here is my time with lyme and how it relates to my pots...

In 1991 I got a teensy wiensy hard to see tick stuck into my left hand after doing mega gardening over a weekend. I thought I just developed another "beauty mark" because I have many of them and they spring up after I'm in the sun a lot. Well, two days later, my new "beauty mark" was gone! And, simultaneously, I now had a blotchy rash on my left wrist and entire arm. I went to the doctor...then to another...it wasn't the typical bulls eye so it wasn't until 9 months later and more symptoms...I finally found a doctor who took this seriously. I had a only a "boarderline positive" test for lyme. By then my symptoms were much worse and I had neck pain and fatigue and palpatations...After months of oral antibiotic, the super lyme doctor put me on 6 weeks of IV antibiotics twice a day. I owe my life to this treatment and to his dedication! I started to feel better.

The swelling of the left leg and left arm remained. I also noticed shortness of breath and weakness and fast heart rate...I went to Mayo by fall of 1992. They said I no longer had lyme, now I had to learn about lymphedema. They noticed "something" in the heart tests but only mentioned them superficially.

Years later, I still felt horrible and noticed the low blood pressure, heart rate swings and problems with cognition and other things...so 1998, I was dx with POTS from a tilt table test at Columbia Presb. Hospital. They never said how to manage it. They just named it and sent me on my way!

From 1998 to 2003 was horrible because I had no idea of what I had or what I could do to help myself. My doctors never even spoke of pots. It was like saying I had hay fever or really, not anything that could be contributing to how lousy I felt and what a limited quality of life I had.

In a 2003 trip back to Mayo, they more extensively diagnosed my type of pots.

As I look back I CLEARLY see that my pots started to "bloom" after my lyme disease.

I have not been getting better, my pots has been getting progressively worse.

I believe my Lyme disease was an unusual presentation that left me with permanent damage including a weak immune system and a damaged autonomic nervous system. I am beginning to wonder if there is also damage in my central nervous system.

I do think my Lyme is gone. I think the damage remains and I can worsens over time and with things like viruses and flu. I also believe the body, my body, has an ability to do some healing after a relapse/spell. I seem to bounce back after a cold or flu..but the relapses are getting longer, more frequent and harder to bounce back from.

I think I feel better in general when I take an antibiotic because they act like anti-inflammatory drugs on my system. I can and do live without antibiotic therapy for lyme but this is because I don't believe my lyme is still there. I only use antibiotics for new infections and for only short periods of time. I have developed med sensitivity. Some people absolutely need them daily...some still have lyme...we are all so different and I can only tell you about my body.

I don't think the medical professionals will be able to know if my pots was dormant and the lyme brought it out OR that lyme disease started the process. I have stopped trying to figure it out. I am trying to JUST STOP THE POTS FROM PROGRESSING!!!

I am hoping my body is going to "re-innervate" and my barroreceptor reflexes are going to get strong enough that someday, I will be doing much better. Until then, I wear my compression garment, compression panty hose, maintain my lymphedema, stay away from contagiously sick people, watch my electrolytes and hydration levels, break my daily tasks down into manageable peices, ponder what to do to earn money when I "feel better", try to be loving in my daily deeds, and try to live in the moment and follow my breath.

That is all I can do for now. If I have omitted something important I will add it. If you have any questions don't hesitate to ask!

Now I am ready for a snack and then a nap!

best regards, tearose

[Jenn202]

Hi Katherine - thanks for your post. I hope you get some answers and help today at your dr's appt.

I just wanted to clarify the thing about Lyme Dr's.... Many of the treating physicians out there right now cannot accept insurance b/c insurance will reject the testing... You can always submit and most insurance will pick up most or at least part of it.

many of these physicians ( including mine) are good people that have put endless efforts into research and help for patients.

They are the Dr Grubb"s of Lyme and have gone against the "yale" mentality to help people..... These Dr's saved my life. I am not exaggerating when I say that I most likely would of not made it if I had not gotten treatment. AT the least I would have been in a wheel chair.....

Not every person that goes in is diagnosed with Lyme disease....

Although there are a couple I can think of who have the reputation.... but most of them are not.

the others are a the Dr's who are interested in linking dysautonmia with Lyme and working with Dr Grubb..... and giving their patiens back quality of life which they would never have otherwise.

I guess we could say the same for the Autonomic speicalsts , that they diagnose everyone with dyautonomia that goes to them. I think that is because the people that seek them out actually do have dysautonomia.

On the flip side I fall suspicious to the supossed Dr's who treat Lyme who tote supplements and other experimental therapies which can be bought or done in their office. I would stay far and clear from that....

I just wanted to add that in..... I'm not trying to be a "know it all" I apoligize if it sounds that way.. Its just that I have gone through so much and seen so much the good and the bad that I know the ins and outs of the Lyme community....

Now I am having to learn the ins and outs of the POTS community!!

For myself had I not treated the Lyme I would most likely still barely be able to stand in the shower without dropping on the bed afterwards for the entire day ( and that was a good day! LOL)

Anyway, I am off the soap box too, and on to getting errands done that I have been putting off all morning! LOL

[MomtoGiuliana]

Just an update--I am on a two-week treatment with doxycycline as of today. The Dr. said the blood tests are just not good enough yet to always detect the presence of the infection and so their office goes on symptoms (tick bite, fever, joint pain) and likes to err on the side of caution. This is somewhat different from what I was told by a different doctor in 2000, so I guess the medical community is finally waking up to how prevalent this is. Anyway, she also said that since my test in 2003 was borderline positive, it is another argument for this two-week treatment. AND, she said since I already have POTS, there is no need to risk any complications from Lyme.

Katherine

[Jenn202]

I'm so happy you are getting treatment Katherine!

Remember that if you still have symptoms after the 2 week period you might need additional treatment.... Espicially b/c of your positive Lyme tests even before this bite.

Email me anytime, I would be happy to help you in any way I can.

Glad you got the doxi.. Take Care

[MomtoGiuliana]

Jenn--thanks for your offer. I appreciate it. Katherine

[DancingLight]

Katherine,

Thank you for keeping us updated. I was wanting to hear what your doctor said. I am glad that you are being treated with antibiotics! I sure hope one round takes care of any problems/potential problems.

Jenn,

Please don't apologize for possibly sounding 'like a know it all'....I found all of your posts incredibly, incredibly helpful and full of useful information and I appreciate you sharing. I can hear the passion in your posts...and I know that comes from a place that you can only be if you have EXPERIENCED IT YOURSELF! You are just trying to make the road a bit easier for those who follow! That is what drives me some days...praying and hoping that someone, just one person, will not have to go through the hoops or challenges that I have. You have learned all of this stuff and now you are just sharing it so that the rest of us don't have to try to figure it out on our own. Like, just learning what kind of hose to wear...it's like, yeah, I don't have to do this all on my own! That's why I love this site so much.

Tea,

I did not realize that you too had Lyme. I, too, have gotten worse over the years. And I, too, try to focus my energy on those I love and living in the moment. But it is very very hard. And I very quickly get overwhelmed b/c I want to be able to better nourish my relationships and my life, and I can never keep up! I have sooooo much passion for life but my body won't keep up! I also wonder what comes first...Lyme or POTS and how they play off of each other. I hear the struggle in your voice in your post...and I just wanted you to know, I'm here holding on with you and hoping for brighter days!

Thank you all so much for posting your stories about Lyme...I found them so helpful. I will let you know where things go from here and if my doctor thinks I need to be tested.

My mom went out to dinner tongiht with some friends and my mom was telling her my 'latest medical news' (very exciting of course! ha!), and the wife said to my mom..."I have always wondered if she had Lyme!" I thought, it NEVER crossed my mind until a week ago! Weird.

As Tea would say...

Sending you all healing light and energy!

Later alligators!

Emily

[Jenn202]

Thank you so much Emily for your kind words

You hit it all in what you wrote.

I usually do not like to talk about Lyme Disease b/c I have realized through the years I have gotten negative responses from people like " oh well that is not me or I am not like that"

So I have chosen to keep info to myself and help myself with what I have learned ( which is working very well)

It gets very tiring to try and explain Lyme... I have become so educated in it and been through so much I can hear someones story and know if its Lyme or not...

Anyway, I appreciate you understanding!

About what cam efirst Lyme or dysautonomia...

Lyme disease effects the central nervous system as well as the Autonomic system.

Dr Grubb explained that b/c Lyme gets into the brain it disrupts the connection to the hypothalamus area which is turn causes all these problems....

Treatment can actually make dysautonomia MUCH better or even completely better. because it is going after the bacteria that is causing thr disruption. So that is the route I am taking since I have seen success already.

Feel free to email me anytime if you have questions. Like Katherine I woudl be more than happy to offer any help That I can ......

[MomtoGiuliana]

Jenn

I think it is wonderful that you have been able to get to the bottom of what is causing/contributing to/triggering dysautonomia for you. I know it was hard work educating yourself and finding the right doctors. It is generous of you to share your knowledge now with others. I do hope you continue to improve.

As is probably obvious, many of us never get as definitive answers. While it is possible that Lyme has triggered my POTS, I have one sister also diagnosed with POTS and another undergoing evaluation. She has the symptoms and I suspect she will be diagnosed as well. So, in my case, there is pretty clearly some kind of genetic link.

Dancing Light/Emily--thanks so much for your concern. I will take the antibiotic diligently, and hopefully it will be all I need!

Tearose--you continue to inspire me by your strength--you all do! I guess that's why I love this forum so much!

Katherine

[DancingLight]

jenn,

are you up to typing at all yet? i am so sorry to bug you, but if you check this and can tell me...

i am going to my PCP tomorrow and my POTS doc has decided to do the Lyme testing...

do I need to request anything in particular about the labs the blood gets sent to? I have tremendous confidence in my POTS doc, and he has worked with a couple of other Lyme patients before...but I am in a small town and he is at a big hospital, so wanted to check and see if I needed to know anything about where to have the blood sent given that I am in a small town?

i am not making any sense am i? this Lyme stuff is beyond complicated!

okay, i hope your trip to mayo went well...you are back? i need to check up on your posts and see where things are at with you!

later alligator!

emily

[Merrill]

Emily, that's SO COOL that you're gonna have these tests done ... Yay! I hope they can provide some answers ... and/or some peace of mind, no matter what the results. This is a good thing. Here's hoping for a strong day with lots of energy points to spare tomorrow ... have a good journey. (Maybe it'll just feel really good to get away from the house for an hour or two ... to get beyond the mailbox!) Keep us posted, OK?

PS I wouldn't think you need worry about where they should send your blood; I imagine the hospital and/or your pots doc will know how to take care of that detail. But if you do find out the best center for analysis, it certainly can help to see if you can direct your blood there.

Best to you,

and peace,

m

[MomtoGiuliana]

Emily

Jenn is the expert, but all I can say is that when I saw a neurologist who has expertise in Lyme, she ordered the "western blot test". You are right that not all labs do this test, but your doctor knows or can find out where to send it. It is an expensive test, btw. Mine came back borderline, I think I mentioned. It defintely showed past exposure, which I already knew. I think these borderline cases can be the most difficult to know what to do with.

Katherine

[DancingLight]

hey all!

just a little update...8 tubes of blood later! and very pooped out.

well, i tried to just 'let it go' and leave it in the hands of the docs, but it was hard. my POTS doc had sent everything, perfect detail etc. and while i love my PCP, the office had NO idea about the tests i needed. it took them an hour in the lab to figure whatever they needed to out and then take the blood. i was so frustrated.

by the time i left i looked so green the whole staff was like are you going to be okay, what can we do...i had the one nurse get me a gingerale for some sugar to get me home. my PCP poked his head back in and was like, oh man, are you okay.

i don't know why, but it just frustrates me to have so much waiting and then have such a huge price to pay afterwards. it doesn't exactly make me excited to leave teh house again!

anyway, deep breath. i am seriously rambling tonight...

but, thank you for your help. i know i got all of the right tests done in terms of the western blot, all of the tick-borne illnesses, etc. but really am a bit nervous about the lab that is reading it.

my POTS doctor is so on top of things though and said he may still consider a 3 month course of antibiotics, so from that end, things will be okay...

i will let you know what the tests show and what the letter said from my POTS doc says when i get it.

i had to leave the office before i got a copy b/c i had already been there more than 2 hours and was so sick, i couldn't wait any longer.

this thread has helped me so much, thank you so much for helpng me through this process...

emily