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» LymeNet Flash » Questions and Discussion » Medical Questions » LYME worsening existing NEURO disorder?

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Author Topic: LYME worsening existing NEURO disorder?
Rachael Noel
Junior Member
Member # 27548

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I've already been plagued with mystery ailments and terrible health most of my life (premature birth, scoliosis, crossed eyes, vision comprehension, tinnitus, neurological disorders, neuropathy, numbness, loss of balance and fine motor skills, spasms, etc etc).

I did get two doctors to admit that I've some minor protrusion of the cerebral tonsils through the forman magnum (ie, my lower brain is stopping up the hole at the back of my skull, limiting CSF flow and increasing the pressure). This may or may not be considered a Chiari Malformation, but that is a condition that is difficult to get diagnosed and taken seriously, and it takes most people 5 to ten years to get diagnosed or taken seriously. I've been trying to get seen my specialists for years now.

I'd been tested for Lyme (and MS, and Lupus, etc etc) before, and even had a spinal tap to see if there were any abnormalities. I have been told by a number of doctors that I am a "mystery case".

Again and again, the tests and scans always came up without any abnormalities.

Until two years ago. When tested once again for every auto-immune disease possible, the ELISA test came up with possible Lyme. I went on antibiotics for a month.

A few months later, my rheumatologist said the tests did NOT indicate Lyme. Ok, then.

A neurologist, just for good measure, gave me a spinal tap to see if there were traces of Lyme infection in my CSF. Nope, totally clean. He, too, said I'd never HAD Lyme.

Then, this past Autumn, my head started to pound. I was already scheduled for a series of new MRIs and tests, and they just by chance happened to catch my Lyme infection in the first few months of infection. I even remembered the bullseye I'd seen on my thigh, at the beginning of fall.

This time, it was Lyme.

And my head. Oh GOD my head. The constant pounding at the back of my skull. Unable to sit upright for more than 15 minutes, and left to lay flat on my back for months. I'd already had premature arthritis of the spine, cramping-shut hands and feet, constant back pain, and so on... This just made it unbearable.

A month of antibiotics, and I was told I was fine. Soon after, the headache waned, and I felt ok.

The past two weeks though, the headache has returned. It's slowly mounting, day after day.

I'm not sure exactly what my question is...

I guess, I was wondering if anyone else has Lyme along side with some other issues, and how they manage to unravel the two?

Thank you for reading.

Posts: 4 | From Summit, NJ | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
julier212
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Yes! It's so hard to differentiate symptoms...I'm surprised more people haven't responded by now to your post! If at all possible, you need to see an LLMD! There should be some in your area, since it's much more recognized as an actual disease in the east, rather than here in the midwest...You may have had Lyme all along...I suffered from symptoms for 10+ years, and Lyme finally was brought up a year ago when I had a bullseye rash on my thigh. Though I tested negative at first, I couldn't believe how my doctor just avoided it all together and wasn't willing to make a connection to the symptoms I was having before this rash outbreak. It didn't sit right with me, so I joined Lymenet.org and learned about igenex, symptoms, and LLMD's! If your dr.'s don't have your back you'll have lots of support on here! I test positive on Igenex, and just started my battle against the disease a few days ago!
Posts: 71 | From Missouri | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Note to Rachael..

1. Neurologists and rheumies do NOT believe in Chronic Lyme.
2. Many inferior labs will come back with false negative testing.

I would suggest ordering a Western Blot from Igenex. You can order it for free, but you have to find a dr willing to sign off on it.

Better yet, begin your search for an LLMD. You're going to need a good one.

You've had a positive response to meds, now you just need to keep going until you are well.

Go here to find a dr in your area.

http://flash.lymenet.org/ubb/ultimatebb.php/forum/2

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--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95875 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Lymetoo
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quote:
Originally posted by julier212:

BREAKING THIS UP FOR EASIER READING>>>>>>>>

[QB] Yes! It's so hard to differentiate symptoms...I'm surprised more people haven't responded by now to your post! If at all possible, you need to see an LLMD!

There should be some in your area, since it's much more recognized as an actual disease in the east, rather than here in the midwest...

You may have had Lyme all along...I suffered from symptoms for 10+ years, and Lyme finally was brought up a year ago when I had a bullseye rash on my thigh.

Though I tested negative at first, I couldn't believe how my doctor just avoided it all together and wasn't willing to make a connection to the symptoms I was having before this rash outbreak.

It didn't sit right with me, so I joined Lymenet.org and learned about igenex, symptoms, and LLMD's! If your dr.'s don't have your back you'll have lots of support on here!

I test positive on Igenex, and just started my battle against the disease a few days ago!



--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95875 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
trigal2
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I have both chiari malformation and neuro. lyme. ANd yes for me, lyme most certainly made my CM symptoms much worse and the other way around as well.

My herniation is 10mm and through C-1 w/restricted CSF flow as shown via CINE Flow study. I was born with this condition.

It took me about 5 years to get the proper diagnosis from the onset of symtoms. It was difficult to say the least, as I also had lyme and the symptoms are/were overlapping.

A month ago I underwent brain surgery to correct the chiari malformaiton. It consisted of; occipital craniectomy, C-1 Laminectomy (my tonsils herniated through C-1), posterior fossa decompression and a duraplasty.

I was sure to get the lyme as well under control as possible prior to surgery and had my LLMD a part of the tx and open communication with my neurosurgeon. My CM symptoms began progessing and I did not want to wait till surgery would no longer be an effective treatment.

I have consulted with 4 or 5 of the leading experts in chiari malformaiton prior to my surgery. PM me if you have any questions re; chairi malformation.

Posts: 376 | From New Jersey | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Rachael Noel
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Yes, I've found a LLMD in my area (who takes my insurance!), but unfortunately he'll be booked until mid October. In the meantime, I've ordered myself two months of metronidazole and doxycycline.

I happened to have 12 pills of azithromycin to hold me over til the rest arrives in the post, and now that I'm on pill number seven, I'm feeling quite improved (though still rather pressured in the head).

I'm wondering though...

In my case, the perpetual brain swelling headache is the one symptom that stands out as being a symptom of Lyme. The dizziness and neurological issues are all symptoms I've had intermittantly for most of my life. Even the headaches at the back of my head were something I still got when I'd smile or laugh too much - just not constant and worsening with being upright, as it is now with the Lyme Disease.

So how will I know when I'm symptom free and can stop taking antibiotics?

Posts: 4 | From Summit, NJ | Registered: Aug 2010  |  IP: Logged | Report this post to a Moderator
   

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