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POTS AND LYME DISEASE


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One of the symptoms of LYME DISEASE

"Neurally mediated hypotension (NMH) is not uncommon. Symptoms can include palpitations,

lightheadedness and shakiness especially after exertion and prolonged standing, heat intolerance, dizziness,

fainting (or near fainting), and an unavoidable need to sit or lie down. It is often confused with hypoglycemia,

which it mimics. NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present,

treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. NMH is

diagnosed by tilt table testing. This test should be done by a cardiologist and include Isuprel challenge. This

will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and

sympathetic dysfunction. Immediate supportive therapy is based on blood volume expansion (increased

sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added

based on response to the Isuprel challenge. The long term solution involves restoring proper hormone levels

and treating the Lyme to address this and the autonomic dysfunction"

There are other symptoms to that are similar to ones I have and have heard others have. How many of you have had LYME? It's got me wondering if I should ask to be tested, I spend an awful amount of time in the parks when the weather is nice, and camping to. Has got me wondering?

Kim

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I have Lyme and it is a very common link with POTS......

If you in any way suspect Lyme I would definetly get to a good Lyme literate Dr

www.lymenet.org is a good place to start.. most of the good Lyme Dr's are on the East coast but I do know there are others as well and Lymenet has a section where you can post for one.....

Like Dr Grubb Said: POTS is usually an effect from something else.....its very rarely just comes on by itself.....and to isolate the true reason for it is important if you can...

Lyme needs proper antibiotic treatment and can cause a bunch of neuro problems. Mine went undetected for years and I have payed the price unfortunately, although antibiotics have saved my life and gave me a life back as well.

Good Luck and feel better.

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I have Lyme disease AND co-infections. It is important that you get tested for both and know the symptoms of both. If you just treat the lyme and not the co-infections, you will remain sick.

As Jenn mentioned, please go ASAP to www.lymnet.org and join the forum. From there, post in the section for "seeking medical help" it's titled something like that...People will send you PMs or emails with names of doctors closest to you. It is VERY VERY important to go to what we refer to as a LLMD-lyme literate doctor. Blood tests aren't the greatest and it's of utmost importance to go to specific labs AND know that lyme is also a clinical diagnosis. Bloodwork doesn't mean you don't have it. Some of us are so sick, it doesn't show up in our blood until we have been treated for awhile...the body stops recognizing the antibodies, until treatment and the body understands what is going on.

Lyme disease treatment is controversial, there are not alot of doctors that really understand how to diagnose and treat the disease. It is actually worse than trying to find a doctor to treat POTS.

In the main section of the forum, feel free to post that you are a newbie, and all of your questions. It is a great group of folks, and they will help you. Find a symtoms list and check off all symptoms you have. It also helps the LLMD if you keep a symptom chart, that you can find online. There are patterns to lyme disease and co-infections. If the doctor sees that certain things happen every three weeks for example, it will be a huge help in diagnosing.

Nobody ever told us lyme can be a cause of POTS. If a doctor had told us this, it would have saved me from years of being really ill and suffering. Before I started treatment I was fainting everyday, multiple times. It was to the point of me sitting up in bed and fainting, getting out of bed fainting...you get the idea. Now I am going weeks without syncope episodes. When I have flairs, I faint, but it is more rare than common these days. I do still have pre-sync and tackycardia. The pre-sync is ALOT less and tackcardia is actually a lyme disease symptom.

Another good website is www.ilads.org They have a two page overview on lyme disease that you should read, along with lots of journal articles, etc.

Good luck and if you have more questions please feel free to post here or PM me.

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Before I was diagnosed with POTS last month, I was doing research and came across the same information. Which was really disturbing to me because I had all the symptoms and I live in one of the most highest known counties for lyme disease. So I got tested. Good to know that I didn't have it, but I am still on my quest to find out what brought on this illness. . .

Best of luck! :lol:

Nicole

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Nicole, I am glad to hear you had some bloodwork done and believe you do not have lyme from that BUT what lab did you use? Igenex is the top lab for testing lyme due to using more than one strain, you see every bar, and they have more advanced testing in general. It's really important to use a lab that does this testing specifically, there are four labs that most people use.

Lyme is a CLINICAL diagnosis. Bloodwork further supports the diagnosis. That is why going to a Lyme Literate Doctor is so important. They see so much lyme they can say okay, we need to check you for these other illnesses, we don't think you have lyme. OR they will say, based on your symptoms, patterns, etc we believe you have lyme. From there they will do more bloodwork, have you keep a detailed symptom chart. They may start treatment to see how you do, etc.

I am just bringing this up because I do not want to see other people get sicker with lyme disease due to poor testing and doctors that aren't up to speed. Lyme worsens over time and becomes very hard to treat, if it's not dealt with as soon as possible.

I do not know where you are located, but if you are in an epidemic area, there is bound to be a LLMD there. It is worth getting an appointment and talking with the doctor. They may say, no its not lyme or it is BUT the lyme doctors are really good at thinking outside of the box, and working to get a patients body balanced.

My doctor works on my entire body and does not just focus on lyme. Everything has to be working well to heal and function well and we focus on that. I hope you will re-consider getting tested again, and seeing a LLMD. They might be able to help you far more than another doctor. My LLMD is used to seeing POTS and is great with dealing with it, and mine is nearly gone due to my treatment.

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I agree with blackbird....The Lyme tests are not accurate...they only drtect antibodies to the disease.

If some one has had Lyme for a length of time their bodies stop making antibodies against it b.c eventually your system recognizes that Lyme Bacteria as its own instead..

I had lots of negatives , but that does not mean anything... Only someone who is Lyme literate can actuallyu diagnose properly......

Its hard to have been through what I have been through and then see so many on here in similar boats ...it brings me way back when I was SO ill with little to go on and Dr's telling me it was all in my head...

Believe me I am not saying everyone with dysautonomia has Lyme and coinfections, BUT I would never not thouroughly rule that out... Had I not been treated I have no idea where I would be... As is I have damage that the antibiotics cannot fix from so many years of misdiagnoses....

Anyway feel free to email me if you have any questions...... Take Care.

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Radha, I had a LONG post full of info. on coping with a herx, alternatives, etc. My computer froze and I lost my post at the end of writing it :-(

Herxes are rough to deal with. The first one is the worst and each one after it will lessen. They only last a week or less. You can do detox baths, drink lots of waters, etc. Your LLMD might even want to reduce your dose during this time, take you off and put you back on or even switch meds. We sometimes reduce my dose until I am through the worst part.

Also, what part of the herx is the worst for you? Pain, vomitting, nausua, mood, fainting, etc? Your LLMD should be able to help you control those things, so you can get through. We address the nausua/vomitting, and pain with appropriate meds, and alternative therapies (massage, relaxation, etc).

There is a natural med you can take if you are unable to do the antibiotics at this point. You have to be off of all caffeine and mint for it to work well. It is taken three times a day and dissolves under your tongue. It doesn't taste bad. It is widely used in Europe and is FDA approved to be used in the states. If you want the info. I can find it for you.

I urge you to find a way to treat the lyme and bite the bullet to get through the worst. Sadly, lyme only gets worse without treatment. Research and doctors back that statement. It's not worth getting even worse, by not treating. Perhaps a different doctor with a different more balanced approach would be able to help you. Herxes are rough, but all lymies go through them and get better. It's finding ways to get through the bad spots with a support system in advance that makes the difference.

Have you been to lymenet? There are lots of old and current discussions on herxes. We all herx about once a month...it varies, but there is a cycle to them and some of it depends on what meds a person is on. I hope you can find a way to get through so you feel better. Good luck and I hope this makes sense. My first post was better but it got lost. grrrr.... You may need a different doctor that deals with severe cases of lyme to be able to help get you through this.

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thanks so much for your long post, yes i go to lymenet regulary, and the herxes last much longer than a week , the night sweats which are already daily get even worse which makes me even more tacky and dehyrated no matter how much i drink, the bone pain is already unbearable, which i take ultram, darvocet, codeine, vicodin, not all at once! but even these drugs give so so little relief, more chills lower my bp even further, the more tachy i am, makes the eating problem that i already have, just about unbearable, i already tolerate so little food! the headaches which are daily and most of the time unbearable, well, i cant take any more pain or POTS symptoms or fevers than i already get, so i dont know what to do, could you tell me about that natural medicine? is it homeopathic, coz i have tried that, and no luck, thanks again for your help

radha

and i forgot to add the brain fog, mood swings, and lightheadedness is already unbearable! i have adrenal problems too, anyway, there is no easy answer,

radha

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Have you been tested for co-infections? The night sweats (I have them too, they are rough) are caused by a co-infection, so that really needs to be dealt with. Are you going to a LLMD? If your herx is that long, it sounds like the doctor needs to come up with an alternate plan to make you comfortable.

Dehydration...there is a powder you can get that helps with electrolytes. When mine gets bad, we call my doctor and if we need to do IV fluids. So far we haven't had to, but its good to know it can be done if it gets bad.

Have you done hormonal testing and tried things to take stress off of the adrenals? Those are things LLMD's typically do. Those things are also made to go haywire thanks to lyme and co-infections. Headaches are part of it too.

If you don't handle orals well (some people don't) can you go on IV treatment? I will find the info. on the natural stuff...don't have it handy. Alot of people that are unable to take antibiotics have some improvement with this stuff. Will get the info and post it for you.

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I just wanted to chime in here with the others that if you even suspect lyme it is really important to find a lyme literate doctor. I have had pots for almost 10 years now, and have been tested numerous times for lyme - all negative. About six months ago I ended up at a LLMD for another condition and tested positive for one of the co-infections (babesia). It's amazing to me that I had never been tested for that before cause there is a lot of overlap in the symptoms. With treatment I have found that my good days are better, but my bad days are worse, so it can definitely be a long road.

Radha, I had a lot of trouble tolerating one of the medications (plaquenil). I had to take the smallest dose possible every 2 or 3 days and build up from there. Maybe you could try a tiny dose once a week or something? It took me about 3 months but I did eventually adjust and am doing better now.

Also, here's a strange one, the night sweats actually make me feel better (after I have them). It's like my body is getting rid of the ick...

Pam

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I just wanted to add that it is very very important to have the proper medical care while testing and treating conditions such as these...... A good LLMD along with a POTS Dr and GP or whoever else is nessesary will monitor progress, admit to the hospital if nessesary, and continue to check blood work, vitals etc etc.....

there is a lot of grey area and I think it is very improtant to be able to sort out as much as possible through a Dr's supervision.....

When I was very ill I had so much going on that had I not had the proper testing and continued to endlessly seek out good Dr's ( lots of trials to find the good ones), it would have been very difficult for me to try and guess what was going on.....

Yes I did have Lyme disease and coinfections and still do , but these things have caused me to have POTS/dysautonomic like episodes along with some other new things I am currently exploring......

B/c of these other problems I need certain things to help me along with the Abx treatment such as monthly monitiring of Blood Work, IV fluids when nessesary, vitals checked, and additional testing when required...

So I think to really know what you are dealing with in ALL aspects is so very important so that you can treat feeling safe as you go along.

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the problem is i cant travel at all to different specialists, so i am stuck with the doc i have now, who doesnt feel comfortable giving iv fluids, or iv abx, what is that electrolyte powder you mentioned? and i know i have babesia too, please let me know about the natural remedy you mentioned, and i will think about trying the abx once a week, it seems like it would be useless taking it so infrequently, but i guess something is better than nothiing, and sweating makes me feel even worse if that is possible, even weaker and more foggy and more lightheaded, thanks again for all your suggestions and replies,

radha

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I found a LLMD that is supposed to be on my insurance, his office is double checking and I should know by Monday. He was recommended by a few who answered my posts on lymenet.org for a Dr. in or near Ohio. I was surprized that there were not that many? It would be a relief to find a cause for all my wierd symptoms even though I really don't want to have lyme, but it would at least something that could be treated and maybe give me some relief. I never even thought of lyme till I saw that alot of my symptoms were similar and that fall when I got sick I did find a big fat ugly tick on the dustruffle of my bed that had filled up on somebody. The dog could have brought it in? We have family who live on a farm, and before they got chickens last year, ticks were everywhere! It's possible I got bit and didn't even know it?

Kim

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Kim, Please edit your post so the doctors full name is NOT listed. Just Dr. J and the state. We do not ever list llmd's names on the internet and especially on forums. Treating lyme is very political and there are people that go after doctor's that treat and try to get their license taken away. It might be okay to do it here BUT it is far safer and less risky to just follow what is standard on the internet when discussing a LLMD.

I have heard good things about this doctor.

60% of the people with lyme disease do not ever see the tick or a rash. The tick could be as small as this period --->. So it would be very easy to miss!

I have a migraine and will post the information you all have asked for later on.

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I got to talk to the llmd office and I'm so happy the Dr is on my health plan. They are sending me a test kit in the mail, that I guess I take to a lab and get my blood drawn and then sent to CA to a lab they use for testing. Then I go on April 26th to PA for my appointment. He's only an hour and 30 min from me so it's not that bad. I just want to rule this out for my peace of mind. I have so many crazy symptoms going on.

Kim[]

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Congratulations!! Sorry, you have to go, but it's great that you got an appointment SO soon. Sometimes people wait three months to a year to be seen!

Thank you for editing the name. It's okay-you didn't know. One of those things you learn soon on in the lyme journey.

I have not forgotten or ignoring messages about information. I have been flat out in bed for days and am having a really tough time. I will get the info. to you all soon. Just wanted to let you all know that since I saw this thread come up, before I got a chance to post info.

OH! On the kit they send you for bloodwork. Make sure somebody competant does it! Get it drawn early in the week, and when it can be FedEx'd right away to the lab. Those bloods have to be handled VERY carefully and can not sit for a day OR over the weekend before being sent.

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Blackbirdsings,

I'm sorry your having a tough time, I do hope your feeling better soon. She didn't explain anything about the test kit, just that when they got my deposit they are mailing it right out. If it doesn't come with instructions I'll have to call them back. Do you think any hospital lab will do it for me? Do they send a script for it in the kit? Do you think the'd let me FedEx it myself so I know it was sent out quickly? I guess I should call and ask Dr.'s office all this. I didn't think about all this when I had them on the phone. I'm lucky lately I can remember anything. Take care and Thanks. Kim

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Hi Kim,

Make a list of your questions. Either call now or wait till you get the kit. Most LLMD's and their offices are used to dealing with patients that have brain fog, etc. and will give detailed instructions. I would assume this office does that. So you might be able to wait until the kit comes and go from there. Good luck!

PS-Make sure you are keeping a running list of questions/concerns and symptoms.

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