After struggling for so many years, the pieces of the puzzle are starting to really point to Lyme disease (even the tell-tale Bartonella marks which I've had for many, many years now make sense). I had blood work done a few years ago, and my family physician stated "Well it's showing positive levels, just not positive enough to concretely diagnose you with Lyme disease, so I'm going to say it's negative."
Needless to say I'd really, really appreciate any referrals to any LLMDs in the San Jose (CA) area. I'm kind of at the end of my rope here, and I'm desperate to find a LLMD physician in my area.
Whatever information or referrals you may have, I'd be forever in your debt. Thank you.
Posts: 4 | From California | Registered: Jun 2013
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For the record, I am in my mid-20s, so this is not for an adolescent. I have been struggling with symptoms/diagnoses ranging from R.A., chronic migraines/headaches, seizures (right temporal lobe epilepsy), and soft-tissue disease.
My muscles & joints have been ravaged, and I've had multiple surgeries to reconstruct complete rhomboid-scapula tears. Even now, my muscles on my right scapula are disintegrating, and I still have chronic pain in my neck (muscles & joints), knees, you name it.
I've been having seizures for about 5 years, though was only diagnosed 2-3 years ago. Other neurological symptoms include things such as poor balance, decreased concentration, memory & sleep issues, as well as a huge decrease in my overall intellect (cognitive impairment).
I still also suffer from cold & hot sweats, fatigue, random shooting pains, neck stiffness, stomach issues, chest pain, panic attacks, and so much more.
This has been going on for about 10 years, although I always attributed these symptoms when I was younger to something else. I can, however, specifically recall that I was bitten by a tick multiple times.
I recently was put on prednisone, which has made my pain skyrocket, and now feel as if I'm at the end of my rope.
I would really appreciate any LLMD referrals in my area. Thank you, and bless everyone who's dealing with this terrible illness.
Posts: 4 | From California | Registered: Jun 2013
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You will get the help you need, Bike!! "Robin123" usually comes here in the evenings. She'll be here! I always defer to her since she's in CA and knows the ropes there!
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Thank you so much! It's comforting to know that there are people out there who are not only going through the same thing, but are putting their time, effort, and strength to help others.
I've had one foot off the ledge the last day or two, especially since my pain has flared up so bad again as it often does. Finding this place gives me the tiny shred of hope I need to make it until tomorrow.
Posts: 4 | From California | Registered: Jun 2013
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Robin, I got your email! Thank you both so much for the help with the referrals, as well as the information. At least I know what direction to take this now, and I'm not as completely lost as I was before.
Definitely stopping the prednisone, it's killing my muscles & joints. Hoping to get in to the LLMD asap, it's time to turn the fight around.
Again, thanks for all the help/information you've shared. You've really given me hope that this might be something I can finally get figured out.
Posts: 4 | From California | Registered: Jun 2013
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Yep, we're giving you hope, because with some proper treatment, you have an opportunity to turn this around.
Posts: 13117 | From San Francisco | Registered: May 2006
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