I'm a 28 yr old female. Started having problems nearly a year ago (last April) with foot swelling and loss of sensation. Swelling went down with meds and 75% of use and feeling returned after several months. Foot doc tested for arthritis, lupus, etc and found nothing. Sent me for EMG which was fine. Recommended neurologist or MS specialist. Neurologist found nothing - brain and spinal MRIs, SSEP, spinal tap, lots of blood work (though not Lyme). Said I was fine and sent me on my way.
Self referred to an MS/MS mimicker specialist. She agreed that something was indeed wrong - especially after a relapse of sorts this January (foot problems again - couldn't tell where it was and couldn't feel vibration, decreased sensation on right side of body, memory recall problems, trouble focusing, no restful sleep, very tired and generally achy and now difficulty/pain in using my hands). Rehab consult agreed something was wrong. Brain and spinal MRI normal again. VEP normal. Thyroid, HTLV, sarcoidosis and Lyme blood work done with LabCorp. Lyme came back positive but lab lost blood before they could do Western Blot. Had more blood drawn which again showed positive for Lyme but the Western Blot was negative. (I still haven't been able to get a copy of the Western Blot. All I know is that the nurse reported the 5 required bands were not found. However, this is from an MS doctor's office so I don't expect them to be versed on anything else.)
MS doc wants to do another spinal tap and continue looking for the root cause. I'm totally open to suggestions, as well as a referral for Lyme specific second opinion.
Thanks in advance!
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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This is a big struggle for me. I'm definitely open to alternative things to help but I'm a bit old school in that I'd like to work with an MD and start with antibiotics.
Not so easy to find, it seems.
Posts: 15 | From Seattle, WA | Registered: Mar 2009
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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