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Posted 4/2/2014 2:19 AM (GMT 0)
I have been taking 3 abx now for about 3 wks. with very little
improvement. I am told it is because I am herxing and s/b detoxing
more often. I thought any improvement I had would prove that this all was LD. But that is not the case and I am
wondering if I should pursue the MS route. How do doctors tell the difference between LD & MS? I have had a positive Lyme test, a positive brain scan,
a negative spinal tap. And feel that I still have no answers...and still
sick many days.....

Thanks for any input you would have.
Posted 4/2/2014 3:24 AM (GMT 0)
Sorry that you haven't seen improvement. I think if you got a positive lyme test, you are halfway through the battle.. it just takes a while to see results sometimes.

I also had a negative spinal tap. I'm not positive but pretty sure that Multiple sclerosis can be confirmed through a spinal at least like 90 percent of the time..something like that. I saw 2 neurologists, one for a second opinion. I'm assuming that you have been evaluated by the neurologist.
Posted 4/2/2014 3:57 AM (GMT 0)
I only saw one Neurologist and he did the brain scan and spinal tap. Did you have brain lesions also? I was told that it c/b MS even though my spinal tap was negative.

But my Lyme test was def. positive, still I wonder if since there is no improvement yet on the meds, I maybe have something else like MS. I just feel so sick sometimes and it does not let up for more than a day or two. It is crazy!
Posted 4/2/2014 9:29 AM (GMT 0)
Hi Sueg,

Many of us have real difficulties getting a positive lyme test. I think that if you have been tested positive, and getting abx, you are having LD.

I think I wrote this before, but I'm not sure (Swiss cheese brain...): 3 weeks of abx is really not long at all Sueg. I myself have been in treatment for 20 months now. I have had 3 'good' days in July of last year. Besides that, it is an ongoing battle, but I'm not loosing hope. I've been on abx for 15 months, now I'm on herbals, and abx for the coinfections.

I herx every single day (some days are worse than others, depends on the treatment), I have flares (Lyme and especially Bartonella), but I keep on fighting it.

In fact, it is already a huge step forward that you are having better days after 3 weeks of treatment. That is honestly a big acheivement.

Can you tell me what detoxing you are exactly doign, maybe we can give you tips on more detoxing methods?

I think you should really keep in mind that Lyme treatment is not like treating other affections. It is complicated, different for each person (symptoms, treatment), and can take a while to see improvement. It is indeed a crazy journey.

 

Posted 4/2/2014 2:34 PM (GMT 0)
I have inflammation of the cranial nerves (causing them to think lyme or brain infection) and a small lesion thought to be a benign tumor on the outside of the brain, which doctors said don't worry about. I've had symptoms for only a few months. Trouble swallowing, facial numbness, and both legs were going numb among other Neuro stuff.
Lyme came back negative and they threw me to mental health. I went to work and my hand went temporarily lame. I couldn't get my hand around the computer mouse. Then one day soon after, I couldn't swallow at all..

I called a lyme doc and got on doxy. I've been on doxy two weeks and I have seen some small improvement. I radically changed my diet, do massive detox, and started liquid B vitamins.

Like baby step improvement. It's a long road. If you test positive for lyme, I would treat it too. This disease is no joke.
Posted 4/2/2014 5:07 PM (GMT 0)
Because some doctors don't believe in lyme or they are deathly afraid to write scripts for unnecessary antibiotics. I think some doctors know lyme is a big problem but are afraid to go against current protocol.
Posted 4/3/2014 2:55 AM (GMT 0)
Thanks for your advice, I will keep on treating the LD, my Igenex test showed IGM positive bands, 18,30,34,39,41,58,83. I know that 2 of those were IND-39,83. And some are not Lyme specific. And the
IGG had 1 positive band-41 (And the IFA?? was 80)

And the abx I am taking are-
Cephalexin 2d-500mg
Metronidazole 2d-500mg
Minocycline 2d-100mg
Nystatin 4d-?mg
Probiotic 1d
DHEA 2d-5mg

Today was day 2 of feeling better-but I still notice the very scarey leg weakness, fatigue, and memory pr.
Posted 4/3/2014 3:04 AM (GMT 0)
Oh, I forgot I am doing the detox baths w/ Eps. & Hyd.Per. and drinking more water and cutting out sweets. So--My story so far!

Thanks!
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