I think it has returned--please advise!

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Mylyme
Regular Member


Date Joined Jun 2013
Total Posts : 31
   Posted 3/30/2018 3:32 PM (GMT -6)   
Hello,

I haven't posted for over two years and I really need some supportive advice. I was bitten 5 years ago; my test results were positive for Babesia duncani, and the following were approximately my lyme bands from Igenex, etc:

IgM : 31++ 34+ 41++ 58+ 93+ 39IND

I understood from someone that these are lyme specific bands. Is that true?

I saw a very good LLMD and did almost three years of oral treatment in including mepron, amox at 3.5 grams per day (probably not enough in retrospect), 250 azith per day (maybe also not enough), and for a period of a couple or a few months, 300 rifampin per day. We suspected Bartonella because I sometimes get weird spotty rashes (not exactly stretch marks but weird pattern-like red areas).

To make a long story short, I sort of plateaued because I got my energy back and the stabbing pains in small joints and healthy teeth mostly disappeared, along with a lot of shooting pains and tingling. But my muscle twitching always hung on and I assumed it was just nerve damage.

So after three years of abx I stopped to see what would happen. Then for two years the muscle twitching always remained and would kind of flare and die back down and spread from one place to the other, but very often in my calves and feet. So I was off abx for two years with muscle twitching and occasional stabbing pains in healthy teeth.

Then about 7 months ago I started getting this really loud ringing tinnitus and sometimes stabbing pain in my left ear. ENT said I lost a bit of hearing on the left side.

Then in late January all hell broke loose. I started getting the weirdest neurological issues...

When I would go to sleep, just at the onset of sleep, a muscle somewhere in my neck (it would often migrate around my neck from one side to the other) would start to tremor. But it would subside when I was fully awake. This made me horribly sleep deprived.

Then my right foot started to have neuropathy, like a tingling, pins and needles sensation when I walk, and sometimes it would burn at night. Then my GI tract starting acting up at the same time with bloating and looseness, and then I started to get a really bad shakiness/hand tremor which would come and go throughout the day. In other words, I became a mess and a neuro puzzle to my neurologist.

I started a low dose of zoloft to stay calm during all this, and after a few weeks most of it started to settle down again and I was able to sleep without getting weird tremors. Then I started abx (just a few days ago). But my foot is still neuropathic and I still get some hand tremors at different times during the day. Even my vocal chords were a bit affected for a while but they seem better now, and I read that people's vocal chords are sometimes affected by Lyme (including Shania Twain).

I called my LLMD who I hadn't spoken to in two years. He said Lyme is the "great imitator" and is acting like ALS--but he also said my case doesn't really fit the ALS profile because of the whole sleep tremor thing. Also I don't think it fits because I was super positive for Lyme, and also I get this weird hand tremor in both hands that fluctuates throughout the day, and also, during all of these 5 years, I have never had any muscle weakness whatsoever. And the tinnitus that comes and goes in my ear is weird, and the fact that for several weeks I felt like I was on the verge of having seizures, with this really weird clicking sound in my ears (especially the left). It feels to me like something is attacking the left part of my brain and making all kinds of neuro issues. I am guessing it is possibly Lyme or Bart?

My LLMD asked for a full workup so I am now waiting for Igenex and spinal fluid results. I just started Amox 3 grams per day and hope to get up to 6 grams per day. Then I am supposed to add 250-600 azith per day, and then eventually add rifampin and also try Tinazadole. (But last time I tried Tinizadole I had a strong neuro reaction and we didn't know if it was a herx or a bad genetic nerve reaction to the drug).

He also said I should get an ultrasound of my gall bladder in case we decide to go IV.

I was also thinking of having a phone consult with Dr MR treat lyme in Seattle since I really like his work.

If anyone has ever experienced anything similar to what I have been through, please write, because it has been awful and so scary. And if you can, please try not to write anything scary (like other dreaded diseases I might have for instance) because this whole thing has been really frightening.

Thank you so much for your help!!!

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 3/30/2018 5:17 PM (GMT -6)   
Hi and yes I have had tremors/vibrations, ear issues, muscle twitching and more.

The tremors/thumping/vibrations came mostly upon laying down to go to sleep, but the vibrations/current in my arms or legs would happen at any time.

There are many different Skin manifestations from Bartonella . Not just the classic stretch mark/scratch like ones.

You do need to keep treating and make sure to detox daily.

When you herx from treatment you can also take binders to help .

I understand how you feel when you have these symptoms but try to distract yourself, change position,anything that helps and think good thoughts about getting well.

I wish you the best of healing and take care, Jo

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 3/30/2018 6:20 PM (GMT -6)   
Sorry to hear that you have relapsed...but it's good you are back on treatment again.

What I wanted to mention - is the Rifampin dosage. It should be 600 mg per day.

(unless you're meaning Rifabutin?)

I had tremors and also tinnitus (pulsatile)...those are fairly common with lyme and co's.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33876
   Posted 3/30/2018 6:22 PM (GMT -6)   
Your Igenex WB IgM bands 31, 34, 93 is lyme.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2023
   Posted 3/30/2018 7:19 PM (GMT -6)   
I had a lot of the symptoms you mentioned, including stabbing pains in the left ear. Your symptoms do suggest bartonella to me.

Kitkate
Regular Member


Date Joined Jun 2014
Total Posts : 148
   Posted 3/30/2018 7:50 PM (GMT -6)   
Hi MYLyme,

I have a similar story. I've been treating on and off for four years. I thought I was better, still had twitching like you but had treated with abx and different herbal protocols for two years and had such small symptoms that I decided to finally stop plus I was having a lot of liver/gal bladder issues. I have the same neuropathic right foot btw. I've had it to lesser or greater degrees for four years (it was my first symptom). I had a nasty bout with the flu last month and my lyme flared so I'm back with my LLMD and back on abx and I've had some serious herxs, more so than I remember the first time around. I also got bit two more times in the last four years so who knows. Anyway, yours sounds like lyme again and bartonella (what I'm treating right now). Hang in there.
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