posted
I realize that this may be an unpopular idea here, and many people here have a day to day struggle with Lyme and Co. and I feel for you . . .
But I feel I have mostly kicked the tick soup, at least antibiotics are not working for me anymore. Treating the nerve pain with a pain doctor and working with a doc that knows about POTS and dysautonomia have helped me tremendously after the abx plateaued for me.
I still have relapses of POTS 1-2 times a year. They are short lived (1 month) and they respond better to POTS treatment than to abx. ( florinef, water, gatoraide, beta blockers ) I really think that this is not Lyme / Bart, but just my nervous system being damaged? messed up?
Does anyone else have this? Is anyone else left with POTS after the Lyme battle?
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
There is another post on POTS going right now.
Good for you!! I, too, am over the day to day struggles of Lyme. Trying to get up the courage to wean off of abx.
My 17 year old has to treat POTS daily. He may be in the pool of teens who are able to outgrow it. I was hopeful that it was purely a Lyme thing.
Is your POTS doc in Chicago? We have seen the Toledo guru.
It could very well be dysautonomia causing your issues. I hope everything works out for you.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
| IP: Logged |
posted
I think I have kicked the Lyme too and am stuck with nerve pain and some type of ANS dysfunction. My body seems to always be in a tug of war between the flight or fight and the calm down systems. I am still treating Bart but think the abx are useless at this point.
I am currently reading CFS unravelled as he talks a lot about this particular problem..beta blockers made me extremely sleepy so I am going to try some other things...
What do you take for the nerve pain? It is still one of my prominent problems which I think might just be permanent damage.
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
posted
Hi Kim 812 thanks for responding. I just had surgery on c2 through c5, they severed the sensory and pain transmitting branch of nerves that come out of those vertebre. I'm really glad that I did it, it's cut my nerve pain in half, but they can't do it on just any nerve. My nerve pain is mostly in my neck and refers into my head and face.
I still have pain, and before the surgery I took alot of migraine meds, neurontin, lyrica, robaxin, vallium, elavil, those are the ones I can remember.
I found a doctor that treats dysautonomia, and currently I am trying an exercise program that involves alot of cardio. The idea is to get your deconditioned body and heart rate at a rate where with time your ANS can "reset itself" but it is supposed to take a while. Also I hope my body can make it!
I felt a lot of relief from florinef, if you can convince a doctor to prescribe it for you. If you haven't taken it and have questions I'm happy to help.
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
Hi Holly- My nerve pain is in my left calf and foot along with constant muscle twitching. I only have it there...no place else ever. It was my first symptom and seems to get worse as the years go by. I sometimes use neurontin if it is severe and I can't tolerate it.
I am not sure I could do alot of cardio exercise. I struggle with alot of fatigue so the most I am able to do is walk at a brisk pace. I will talk with my doctor next month.
I did try florinef a few years back but it made me feel very bloated and my mouth salty. I know I don't have true POTS as I have worn a holter monitor and had the TTT test and passed easily. My heart rate averaged at 69 beats during a 24 hour period.
I am pretty positive I have no active infection now but will stay on the abx till next month when I see the doctor again.
I always feel like the parasympathic and sympathetic functions are clashing continously. It is horrible....
Thanks for the info
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
posted
I know what you mean about the parasympathic and sympathetic functions clashing. For many years I felt like I couldn't do anything to disrupt or activate one or the other. I just stayed REALLY conservative and even keel.
I still have those feelings, but they are less. I get a headache when I do more than just walk, but I hope that the exercise will help my body, because it's supposed to be one of the best non drug things you can do.
If you are able, I would keep up the walking or whatever you are able to do. I feel for you and hope that you can find an answer or something that works.
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
I had one neurologist tell me that your nervous system should balance out if you leave it alone for a long while . . .
Not sure that I believe him, but sometimes I wonder if all the drugs I was taking (and I still take some) might have been exacterbated my ANS symptoms.
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
I feel that the drugs really mess with my ANS as I always feel worse on them and I know it isn't herxing. Right now it is my worse problem. I really don't know what to do about it. I keep telling my doctor I feel like I am in flight or fight constantly and he keeps telling me it is the Bart infection which I don't believe anymore.
I try to walk every day. I am seeing the doc next month and tell him I am done with meds. Hopefully he will open his mind to other reasons as to why my body is so out of balance. It is brutal....
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
posted
My pain doctor said that extreme pain can cause an vasovagal response, like fainting or ans dysfunction. But it usually recovers when the pain gets better, like when you first break your arm or they re-break a bone to put it in a cast.
I've had extreme neck pain for 4 years, and no one can tell me the source. Started 4 months after lyme treatment, but could I have had a minor injury that was blown up by they lyme? At any rate the RF surgery on my neck helped a lot, FINALLY I am getting some relief.
For those 4 years I had really bad ANS disfunction like you are talking about and no one knew what to do for me, it was so horrible. A year ago I had to quit my job and move in with my parents, and this was 3 years into treatment.
Having less stress in my life helped, but I quit all drugs for a few months and that helped too. Going to the doctor was such a huge source of stress for me that I would be in bed for 2 days after an appointment, I would spend all this money and they would act like monkeys and blame it on me like it was some small thing I was doing or not doing.
In the mean time I was suffering and not able to eat because even that tripped up my system.
Rifampin and Levaquin helped me the most, so I have bart too, but after a while I plateaued.
I would say if you feel like going off drugs, then go for it and trust your body. It's taken me a long time for that response to calm down, and I still have it a little bit. Maybe I am just extra sensitive. But have hope that it can calm down with time if you can find a way even if it's doing nothing.
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
Can I ask what your dose of Rifampin was? I am currently on 900mg and he wants me up to 1200mg and then add the factive slowly. I can't take levaquin due to tendons becoming sore.
I just feel that since starting the Rifampin again my whole ANS system has become out of control. My leg pain and twitching is sooo bad I sometimes just want to cut it off below the knee so I don't feel the pain. I suppose I could try neurontin full time but just don't like being on all these meds....
That is how I am after an appointment...totally wiped out and drained. Even just socializing or taking a short trip will drain me and it makes me feel just horrible inside. My body can't tell good stress from bad I am guessing.
So I think I will go down to 600mg on the Rifampin and start adding the factive 1/2 tablet at a time. I want to be able to tell the doctor next month that I did try and it made my body go nuts....
I honestly don't have much stress. I work a couple days a week...my kids are grown and gone..I have a wonderful husband and great friends. It is mostly certain activities that push me over the edge. Mostly involving interaction with others...not even physical stuff for the most part.
Thanks for all your help and it is nice to know I am not the only one with this problem...question is how to reverse this and get me back to where I was even 3 years ago. I would even settle for that at this point!
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
posted
I don't have POTS as described in most literature. I feel mine is more of something called hyperadrenergic pots which is a little different. I don't have tachycardia when standing or ever feel dizzy...lightheaded...or lowered blood pressure.
My problem is more with the nervous system meaning flight or fight/calm down problems. I always feel wired/hyper inside and have trouble settling down for sleep or anything that requires relaxing.
My body is in a definate tug of war with itself constantly...I am going to try some of the stuff outlined in the article I read on this particular type of POTS....
I don't think it is a symptom of any particular co infection..just a result of whatever infection attacked my body. I didn't have this when first sick but it has developed over the past 4 years...
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
posted
I was on 600mg of rifampin I believe. There is research the rifampin can affect adrenal function, that might be worth a google search. It may be worth it to go off and see if that is waking it worse, but please do what feels right for you, everyone is different, I can't give medical advice.
Florinef may be able to help with the adreniline rushes because it is aldosterone. Or you could try increasing potassium in your diet and see how that feels.
Posts: 33 | From Chicago | Registered: May 2008
| IP: Logged |
posted
I am going to stick it out until I see the doctor next month. He wanted me to get up to 1200mg of Rifampin but there is no way I am going up that high. I am sure that 600mg is the dose that the doctors usually prescribe.
I only was on Florinef for about a week before quitting so that maybe will give that a try again. Thanks!
Posts: 343 | From North Carolina | Registered: Oct 2008
| IP: Logged |
posted
Holly, I am absolutely left with ANS dysfunction, although it is slowly improving over time.
I don't have POTS, although I did have those symptoms pretty severely years before dx and tx. I do have symptoms similar to kim812 but they are slowly improving.
I stopped ABX recently and am hoping these symptoms will continue to improve without the ABX toxicity.
Posts: 478 | From Third Coast | Registered: Feb 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic