I think it has returned--please advise!

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!!!

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.

I had a lot of the symptoms you mentioned, including stabbing pains in the left ear. Your symptoms do suggest bartonella to me.

Mylyme,

How are you now? I have very similar symptoms to you and am wondering if you’ve figured out this relapse?

Thanks!

If you are experiencing pain in healthy teeth, stabbing ear pain, tinnitus, tremors, if your health is declining quickly you could be dealing with mold toxicity.

Hi Woodduck if there was black mold present in my childhood home could it still be effecting me now?

I feel your pain. I finished iv rocephin in October. ID doc told me it would be 6 months until I know what my new normal feels like. Neurologist told me my slight tremor might take years to go away because of how slowly nerves regenerate. Opthamologist told me my floaters were actually brain damage and I have to learn to live with it. Thank goodness for second opinions. I went to the P vision institute in CT last week and get my prism glasses soon. I can’t wait. I have been compensating so hard for my visual issues that it has led to poor posture and back pain. I don’t know if my Lyme is chronic. I try to stay optimistic. But every ache and pain definitely makes me nervous. I had the flu last week and wound up in urgent care and the doc said “well it is either the flu or Lyme” and I seriously almost fainted. Turned out to be flu, but I’m still scared all the time.

Yeah it could be, you might not have gotten it all and it could always grow back if circumstances are the same that made it grow in the first place. There is a blood test you can take at LabCorp for types of mold to see if you still have it.

Thanks so much jb I’ll ask my doctor for it!

Hi Christinety,
I believe you have posted your questions to an older post from march 2018.

I am not sure if My Lyme is still active on the forum, you can try to look in their profile to see if an email is enabled.

If it is you could try emailing them with your question.

Hope you get some relief soon from your symptoms, take care.

CatskillsMelanie said...
Girlie,

I tested negative for both - maybe I should get retested?

Unfortunately the tests for Bartonella and Babesia come with a high number of false negatives.

You could re-test....or you could find a LLMD that looks into treatment for confections.

What have you taken so far? Have you been on Mepron...or Malrone...(babesia treatment.)
What about Rifampin or Rifabutin (bartonella treatment)?

CatskillsMelanie said...
I haven’t taken anything for babs or bart because I tested negative — I just made an appt with my doc to be retested. For Lyme, I took doxy for 8 wks, cetriaxone for 2 wks, then did the iv rocephin for a month. Thanks for the feedback.

You’re retesting for bart and Babesia?
A negative result won’t rule them out, unfortunately.

Most (all?) people have a coinfection or two ....