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-   -   Advice, Please! Tremors, Trembling, Jumpy Nervous System (https://www.healthboards.com/boards/lyme-disease/587806-advice-please-tremors-trembling-jumpy-nervous-system.html)

monarog 03-13-2008 09:22 AM

Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi,

Okay, I know patience is a key word with Lyme treatment. I am only one week on oral Azithromycin and easing into it, 250mg now, increasing to 500 mg in one more week. I have Lyme, Bartonella, Babesia and Erlichia.

Of course, I have tons of awful symptoms, mostly neurological. My biggest hardship is my internal trembling, tremors, hyped-up central nervous system. It is so hard for me to tolerate 24/7, terribly uncomfortable and definitely my biggest complaint.

I would so appreciate hearing from any of you that deal with this, or better yet, have dealt with it (ie: therapy worked!). It is hard for me to believe that oral abx will give me relief, has it worked for any of you? Please, please let me know as I am in need of a little hope right now; I'm really struggling. I believe my LLMD's plan is after a couple of months I will go on Flagyl and be changing up the abx as she sees needed. Appreciate any input from you. Thanks loads. Mona

fernee 03-13-2008 10:32 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Mona,

I had internal shakes that were pretty bad and then moved on to head shakes (like bobbing and rocking). I was (and still am to some degree) very moody and jumpy. Felt like I was loosing it and do not think anyone really understood that had to deal with me. It has gotten better but it did take time.

My head shakes only come on now with stress. I am not as moody but with three kids (two teenagers) I tell them to cut me some slack. :)

It will get better. I have been on several different combos of meds. Currently on IV rocephin, flagyl, zithromax and mepron. This is the best I have felt in a lonnnnggg time so something must be working.

Good luck and just try to hang in there.

TropicalTrace 03-14-2008 09:29 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi Mona,

I know exactly what you are talking about. I have experience most of what you are experiencing also. I find that have some Xanax or other benzo around helps when it becomes to a little to much to handle. I have small children who move quickly, and they often startle me so I find that the Xanax helps mellow me a bit. Doesn't take away the symptoms, but makes it a little easier to handle.

Tracy

monarog 03-14-2008 11:40 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi Tracy & Fernee,

Yes, I have used a benzo before as well, but currently am not. Are you being treated for Lyme Tracy? I guess my question is if you/anyone has experienced improvement with these nervous system symptoms after oral abx therapy for Lyme Disease. I am hoping to get some relief from these symptoms vs. just masking them, you know what I mean? I appreciate input.

Sounds like Fernee has had improvement, though she's on IV now, not oral. Were any of those symptoms improved when just on oral Fernee? Yes, I understand the kid thing you guys, I too have 3 of them, ages 16, 14 and 7 - busy, busy. I am rattled enough when I'm healthy!...so this trembly, jumpy stuff is awful. It's hard to tolerate a loud noise, my son suddenly throwing a ball toward me, whatever...feels like I am going to jump out of my skin and often makes me wish I just could! It makes me wonder if this is what a drug addict feels like when they're going through withdrawals - it sure is terrible. I hear so many Lymies talk about pain and fatigue, which I do have; but, this over active nervous feeling that I just can't shake is the worst for me. Just wondered if I was the only one...sorry you guys have this too...but my misery does love the company. I find relief knowing that this is a part of "normal" with Lyme, though I'm holding out hope my therapy will help and that yours does too. Thanks loads for your input and support. Mona

fernee 03-14-2008 12:49 PM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Mona,

I felt a little relief with the orals but the symptoms would seem to be going away and come right back. This is truly the best I have felt in a long time. My husband says he can see where I have a little bounce in my step again. More energy but I do get tired. Dr said this was improvement though because before I just stayed tired and did not even recognize a difference. Now I do. And to be honest, I do not mind the picc anymore. Pain with the issue of getting it wet and all but thats about it right now. I hate with a passion taking any pills and to be on so many orals is just making me sick so I am hoping this is definately going to do the trick with the other meds.

Our kids are the same ages, well two of them. Mine are 16 (17 next month, she is my diabetic) 14 & 8. Just signed all three of them up for softball so we will see what this does to me. They just go through so much that they have to live also. I will do my best to not let it stress me. My husband helps as much as he can but he works almost 60 hours a week and there is not even much time for rest so it is hard.

I truly love this board. It helped me so much and it part of my daily life. I should be working but I sneak a look and see what is going on through out the day.

Hope that you feel and get better soon.

Tammy

TropicalTrace 03-14-2008 10:19 PM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi Mona,

Yes I have lyme. I have been treating it for 10 months on both orals and IV. I am currently on IV Rocephin. On my first go around on orals I found some relief, but then a break to rest the liver, these symptoms came back in full force and I just have not been able to shake them. Hence the benzos. At the beginning of my treatment I was resistant to use the Xanax, 10 would last me 2 months (use only when I haven't slept in 5 day kind of thing). Also things slightly improved on the antibiotics I was first on that I didn't need them. After the relapse and dealing with these symptoms for so long I decide I need to mask these symptoms in order to be around the people I love, I can't spend the next x amount of months waiting for the antibiotics to kick in and work. I have a family I need to interact with, I can't hide in my room by myself. So I use the benos to function. That is a personal choice I guess, I just wanted to live as much of my life that I can while fighting this bug. Because no one can tell me when and how I will get completely better, I do what I need to make my life the most comfortable as possible until I don't need them.

Tracy

monarog 03-15-2008 07:23 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi Tracy and Tammy,

Thanks for your input. Tracy, I totally get what you're saying. At some point, you have to look at how you're functioning and what your life is like. This has all been very humbling for me and would never judge another on how they are being treated, personal choices and what works for some may not for another. I am so early in treatment (one week!) I am just holding out hope that it will provide me some relief of symptoms. If it comes to me having to mask symptoms because things aren't improving, I'd do it as well - I'm just way too miserable. I will see how things shake out I guess. I have to admit I get discouraged when I read the length of time you guys have been treated and are still struggling, though it's great to hear - as it sounds like Tammy is feeling better than she has in a "loooooong" time. :) Glad to hear it.

Yes, my kids keep me hopping too. One in track, the other in volleyball and my youngest in soccer - it's hard to keep up with; but, like Tammy said, they need to live too. As scary as it is sometimes, it was a relief for my oldest to get her license and help with driving. She is my most social, active one, so it really helps. Tammy, sorry to hear your oldest has diabetes, hopefully they're able to keep it under control. My mom has Type II and every surviving sibling of hers has it as well - it's all over my family, Type II that is. My husband also has been so supportive of me, though owns his own business therefore also works long hours. Sometimes I feel guilty as he really tries to be understanding and cut me slack when I'm just a pile; I feel like I don't deserve him sometimes - I wish I could be healthier for him and hope one day I will be.

This board became a part of my life a couple of years ago and has been a God send for me too. However, I was a regular on the Spinal Cord Disorders Board. I herniated a disc in my neck and had surgery about one year ago. None of my symptoms improved after surgery - therefore continued doctor visits trying to figure out what was so wrong with me. My LLMD suspects the Lyme played a role in the herniation, not an uncommon scenario in Lyme patients I guess, ugh!

Thanks again you guys. I look forward to "talking" with you more as I continue on this roller coaster. I am meeting a friend for a run this morning, when I'm well enough, I try to muster up just enough to know I can still function to some degree, some days/hours are definitely better than others. Have a good weekend. Mona

fernee 03-16-2008 11:57 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
It sounds like you had a nice weekend. My has been pretty nice. Cannot complain too much. Started running a fever again this weekend and had some night sweats but it is ok.

I do think the mes are starting to take there toll on my stomach. I just feel so sick in my gut and everytime I have to take the mepron or flagyl I just want to throw up. Zithro not too bad since it is once a day.

My oldest is suppose to get her license in May but it is so busy around here I am freaked out about her driving alone. She did mention recently to me about how much help she could be. Sure she was saying that sincerely and in hopes that I would cut her some slack.

Her diabetes is all over the place but that is because she also has rheumatory arthritis and when that acts up it throws her numbers all over which is why we were in the er Monday night. She was 123 one minute and literally within an hour she jumped over 600. She did a correction of 10 units and we left for hospital, one hour later when they did labs they confirmed she was almost 700 then so not sure how high she really was since meter stops at 600. Pretty scary how bad it gets but she is a strong girl and trys to deal with everything and continue to help me out. She has already asked if I was sure if it would ok for her to play softball. She is worried it will be too much for me.

Yeah, I know what you meant about being discouraged about how long everyone has been on meds especially when you hear years, but we all do what we have to in order to get better, or at least feel it. Next month is my one year mark of steady meds and I really feel lucky that I have got to this point with no problems with liver or stomach. Just hope they are not starting now. Hell, I have not even had any yeast problems so very lucky;).

Hope we all continue to improve. At least we all can say we made some friends and sure did learn a lot about it. I will give my 2 cents on lyme whenever I can.

brimmy 03-16-2008 03:43 PM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
[QUOTE=monarog;3484905]Hi,

Okay, I know patience is a key word with Lyme treatment. I am only one week on oral Azithromycin and easing into it, 250mg now, increasing to 500 mg in one more week. I have Lyme, Bartonella, Babesia and Erlichia.

Of course, I have tons of awful symptoms, mostly neurological. My biggest hardship is my internal trembling, tremors, hyped-up central nervous system. It is so hard for me to tolerate 24/7, terribly uncomfortable and definitely my biggest complaint.

I would so appreciate hearing from any of you that deal with this, or better yet, have dealt with it (ie: therapy worked!). It is hard for me to believe that oral abx will give me relief, has it worked for any of you? Please, please let me know as I am in need of a little hope right now; I'm really struggling. I believe my LLMD's plan is after a couple of months I will go on Flagyl and be changing up the abx as she sees needed. Appreciate any input from you. Thanks loads. Mona[/QUOTE]


Mona, I dont know if you are doing any detox baths, but they have always helped me tremendously with that awful somatic and psychological jumpyness.
The recipe I've used is 1 cup of baking soda and 3 to 4 cups of Epson Salt in a normal sized bathtub, warm, but not hot water.

monarog 03-16-2008 08:15 PM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi,

Tammy, sounds like you've had a rough go with the stomach issues, so sorry. Hope it resolves itself shortly and is not an ongoing battle, one more thing I'm sure you don't want to have to deal with! Also, sorry that your daughter's diabetes is all over the place; sound like she's a tough kid, arthritis as well - I'll bet she's wise beyond her years. I'm sure it must be a huge stress for you - on top of your own health issues.
Brimmy, thanks for the detox bath idea. No - never tried it, I am just starting my Lyme treatment and learning all I can. Of course, I just got out of the bath when I read your email! So....I'll pick up some Epsom salt and extra baking soda and give it a try. This constant over-charged electrical feeling is terrible for me; I'm hopeful my abx therapy, in time, will help...I'll try anything! Thanks for the idea....I'll let you know how it goes - appreciate your input - everybody. Mona

AuntSissy 03-17-2008 06:20 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Mona, can you please explain some of your symptoms . It sounds like you are on the same treatment as my husband, he also has mostly neour. symptoms.

monarog 03-17-2008 09:03 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
Hi...

I have terrible neck/arm pain (I also herniated a disc in my neck - probably attributed to the Lyme), balance issues, tremors - fairly body wide, muscle twitching, numbness that moves around, face, tongue, feet etc. I have sound and sometimes light sensitivity. I developed sudden onset of elevated blood pressure and also feels like my heart is racing/palpitating a lot. It almost feels like all of my nerves are constantly vibrating/trembling, it's very uncomfortable and my biggest complaint. Sometimes my fingers get rather stiff...everything waxes/wanes. My over-reactive/trembling nervous system is by far my worst symptom to tolerate. I have only been on oral Zithromax for 10 days at 250 mg., I bump it up to the full 500 mg. later this week. I have noticed no change in symptoms, have had a few pretty bad days, but don't know if this is actually herxing or my usual bad days that I often have. Hope this helps. Mona

AuntSissy 03-19-2008 06:34 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
[QUOTE=monarog;3490262]Hi...

I have terrible neck/arm pain (I also herniated a disc in my neck - probably attributed to the Lyme), balance issues, tremors - fairly body wide, muscle twitching, numbness that moves around, face, tongue, feet etc. I have sound and sometimes light sensitivity. I developed sudden onset of elevated blood pressure and also feels like my heart is racing/palpitating a lot. It almost feels like all of my nerves are constantly vibrating/trembling, it's very uncomfortable and my biggest complaint. Sometimes my fingers get rather stiff...everything waxes/wanes. My over-reactive/trembling nervous system is by far my worst symptom to tolerate. I have only been on oral Zithromax for 10 days at 250 mg., I bump it up to the full 500 mg. later this week. I have noticed no change in symptoms, have had a few pretty bad days, but don't know if this is actually herxing or my usual bad days that I often have. Hope this helps. Mona[/QUOTE]
Okay, some of the symptoms sound like his..i.e. neck arm back pain. He also has trouble with his eyes and presure in his hear. He is on Zithromax 500 a day and 400 of Plaquenil. He has been on it for 8 days now and no change in him yet.

monarog 03-19-2008 09:44 AM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
My LLMD said it will be a sloooow process. Also, sounds like the longer one's been sick the longer things could take. Of course, the number of co-infections is also a factor - I have 3 coinfections as well. I believe I was infected the summer of 2004, with symptoms really kicking in the fall of 2005 -hope your husband and I start seeing some results sooner than later. I am actually consulting a cardiologist next week. Every time I take my BP it almost always indicates an irregular heart beat. I know this is not an uncommon symptom with Lyme. I just figure better to be safe...it took me over 2 years to figure out what was causing my horrible health problems and am hopeful I am on a road to recovery, albeit slowly. I would prefer not to keel over with a heart attack at this point now that I finally know what I am battling. Please keep me posted on your husband's progress, okay? I'll do the same. Take care. Mona

brimmy 03-21-2008 07:03 PM

Re: Advice, Please! Tremors, Trembling, Jumpy Nervous System
 
[QUOTE=monarog;3490262] My over-reactive/trembling nervous system is by far my worst symptom to tolerate. [/QUOTE]

Have you started the detox baths yet? I used to feel [I]exactly[/I] like you describe and the baths really helped.


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