I don't know how experienced the LLMD's are that you have consulted but it sounds like your infections haven't been fully treated yet.

Co-infections like Babesia can reportedly cause tremors and again diagnosis is very often clinical in the absence of a positive test.

I have had slight tremors and muscle weakness myself and have Babesia, Bartonella and Lyme. My WB is equivocal too and Dr B is certain I have Lyme.

Also antibiotic combinations are generally used and IV followed up by oral antibiotics.
6 months is not long for Lyme treatment.

If you are confident in your LLMD's abilities then they should pursue other possibilities or change your treatment if you are plateauing. If you are not happy with their treatment post in 'Seeking a Doctor' and see a doc that comes highly recommended.

Hope this helps
Emma

I'm very sorry for what you are going thru - I do know that 6 months of treatment possibly isn't long enough to make a difference at all.

It didnt with me atleast. If you trust the LLMD's I would be inclined to believe them. Have you been tested for coinfections? I hadn't been tested (effectively) and until I started babesia treatment I had no improvement (8 months atleast) and it is still going to take me a very long time to get rid of lyme (i have more coinfections).

I am sure someone more knowledgeable will be by to give you better information, I just wanted to reassure you that 6 months unfortunately is not always the trick.

I'm a pretty impatient person by nature but one thing I've learned is that there are just some things I can't control, lyme being one of them, and I have to let them take their course.

To give you an example of where I am with my treatment, I am rounding the bend on being in treatment for 3 years. I have been treated for two coinfections in this period of time and I am finally starting to see some positive response to the current lyme treatment. My hunch is that I probably have at least a couple more years to go. I may continue to progress, I may slide back and need to change my abx, but only time will tell.

I know that might seem overwhelming to you at this time, but improvement from lyme disease does not happen overnight and six months is a very small amount of time in 'lyme years'. I too have a tremor in my right hand, and once and awhile my left hand joins in (too bad I wasn't in a band with tamborines!!!). I also have nonstop tinnitis. While I'm seeing an improvement in my energy level, the tremor and tingling is still there as is the ringing in my ear. I figure in time it will go away.

I am so sorry that you are feeling a bit confused right now about your diagnosis...

I think we have ALL been there too at some point on our journey to better health...
questioning whether it is or isn't LD.

I just would like to further echo what the others before have already pointed out...

this takes SO much patience! Six months is NOT long considering you have had symptoms for at least two years.

I am also dealing with a Bart infection that has just recently shown up in testing. I'm convinced that this co-infection has really slowed down my progress thus far.

But, once I began treatment for that as well...things really started to shake up!

I'm just hitting the 14 month mark in my own treatment. I've slid back many, many times...BUT, can tell you, that right now...I am feeling better than I have in so very long, that I had actually forgotten what feeling good felt like .

Hang in there my dear, and you too will get there.

My very best,
Melanie

Be sure to read this explanation on the Western Blot test. Your "equivocal" probably is really "positive"....maybe this will give you peace of mind about the Lyme dx.

My father was dxd with Parkinson's and died 7 yrs before my dx with lyme. I am convinced that he really died from complications of Lyme disease, not PD. My mother is also ill from Lyme, but is too fragile to go thru treatment.

Please continue your abx regimen! Hopefully, the tremors will go away.

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

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oops!
Lymetutu

Four months ago, Dr. H started to treat the co-infections even though I had not tested positive to any of them. Given my symptoms, I am all but sure I have Bart and Babs.

Once I started that treatment things started to change. Symptoms went away and I had my first real Herx. It is hard amongst all the things that effect you to keep the faith, but things will get better. Just religiously follow your doctors protocol.

I will keep you in our prayers.

Lyme diseases best defense is that people give up before the treatment will work.

The average infection reproduces every 20 seconds. Scientists have figured that during a phase in reproduction it is not affected by antibiotics. It takes like 1170 cycles to kill the bacteria, which means about a week.

Now if we apply the same model to lyme disease, which reproduces much slower, it will take 6 months to reach the time to kill the bacteria....IF IT WAS CAUGHT EARLY.

By early, we are speaking of, tick bite, followed by flu symptoms, rash.

If it disseminated, even once, it would increase that time. If you have multiple disseminations (which is likely to have causes tremors and neuro stuff) it may take longer.

also, are you checked and treated for co- infections?

Have you discussed your plateau with your doctor?

Our daughter had lyme from 1993 to 2001 undiagnosed (by the docs anyway....) in 2001 I finally got her a diagnosis (which fell into the CDC guidelines thankfully) and she got treatment. She was on treatment for 17 months, including 9 months IV rocephin before she made a huge turnaround. We did notice subtle changes before then, but she had a HUGE change last novemeber, and has continued to improve since then.

Be patient.
Keep a diary and if you dont have time, keep a small notebook by your bedside and every night and morning, write a number from 1-10 based on how you feel.
Do this for another 6 months, and see if the average number gets closer to the side of the scale you would call good.

I have a post here somewhere called, Mileposts or something like that...it outlines similar frustrations to what you went through, and the outcome after we were persistent in maintaining treatment.

quote:

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Originally posted by Lishs mom:

I have a post here somewhere called, Mileposts or something like that...it outlines similar frustrations to what you went through, and the outcome after we were persistent in maintaining treatment.

.

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found it!!!
http://flash.lymenet.org/ubb/Forum1/HTML/022885.html

quote:

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Originally posted by Mandy:
Thank you all so much for the posts and thanks to you Lish's Mom....your daughter's accomplishments and recovery is a true blessing! I am so over joyed to hear stories like that. I do have faith, but when doctors bring up PD, it's frighenting. My PCP sent me to an Infectious Disease doctor who told me that 6 mos. of abx is enough to cure any lyme and that what I have is a neuorological problem. He wants to send me to a neuro (a path I've been down already). That's when I turned to you all in hopes of finding someone with similiar symptoms and has felt relief. I'm so afraid of this tremor turning into PD. Has anyone had tremors and PD symptoms that have been resolved? What abx have helped? Thank you all again.

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