posted
My friend (who is too sick to be on the computer right now) seems to have neuro Lyme, but now even her LLMD is questioning her symptoms. She had a tick bite and classic EM rash, and very classic Lyme symptoms, but she has not had a positive Lyme test yet. She was diagnosed with Lyme based on the tick and the rash.
Anyway, her symptoms are very severe and sometimes pretty odd (good ol' wacky neuro Lyme!), and I told her I'd help with the following. So if anyone has any info., please post it here (or email me if it's doctor's names):
- Does anyone know of a LLMD neurologist in/near Western Massachusetts?? (Southern VT, CT, upstate NY, Southern NH could work).
- What are the basic tests she should get to prove the existence of neuro Lyme? Are MRIs useful? Spinal tap? What else?
- For those who have neuro Lyme, does anything help besides IV antibiotics?
Thanks!!
Posts: 929 | From Massachusetts | Registered: Oct 2007
| IP: Logged |
bettyg
Unregistered
posted
NO SPINAL TAPS EVER! *******************
mri's show white matter but are misinterpreted as MS many times!
try this for drs;
Please go to SUPPORT GROUPS, left-hand side column by state. CALL the nearest group leader for advise. Do NOT email; many are too sick to reply; thanks!
People seeking doctors in certain states might be able to get help from their state online information and support group. Over 1200 people belong to these state groups. Many of the groups are small but quite a few have 20 or more people on them.
Type your state name and lyme as one word, e.g. newyorklyme
For SC, SD, ND and WY, put a hyphen between the statename and lyme, e.g. northdakota-lyme
The groups are moderated so you have to apply, and we 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.
i'll let others answer your other questions; time for
IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I have neuro Lyme. Doxycycline 200 mg twice daily cleared up my head in just a few weeks.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
You are VERY lucky CherylSue! How long had you been ill when you took the doxy?
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by CherylSue: I have neuro Lyme. Doxycycline 200 mg twice daily cleared up my head in just a few weeks.
CherylSue
Cheryl, I am confused...in other posts you say Doxy only cleared up your brain fog by about 10%, and mention subsequent relapses and other courses of antibiotics (Amoxicillin, etc.)
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by LymeCFIDSMCS: - What are the basic tests she should get to prove the existence of neuro Lyme? Are MRIs useful? Spinal tap? What else?
- For those who have neuro Lyme, does anything help besides IV antibiotics?
Thanks!!
I did a month of IV without much luck due to untreated (and unknown) babesia WA-1.
Orals have helped me tremendously, AFTER treating babesia a couple of times.
High-dose Amoxicillin plus Probenecid helped. So did a course of (ugh) Flagyl. Other drug combos which I can't even remember. Doxy is wonderful for initial treatment, albeit puke-some!!
I personally think an MRI is a good idea. Non-invasive and sometimes useful to identify areas of increased signal or white matter lesions. Also to rule out other problems.
As for spinal tap, NO WAY, unless her LLMD feels it's necessary or suspects some other process other than lyme. And given her history, can't imagine why. Taps reveal lyme only about 10% of the time in people with proven lyme, so it's diagnostically kind of unlikely. However, a neurologist (generally idiots) will immediately think of this as the first thing to do, and would declare her to NOT have lyme if her tap is negative.
Good luck -- you're very kind to help your friend out!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Clarification: I only started Doxycycline in Decemberand have been on it 5 weeks. I still have fatigue, malaise, and burning skin.
I suffered from remitting/relapsing Chronic fatigue for 7 years. I was recently diagnosed with Lyme in October. Amoxicillin was my first antibiotic but made me feel worse. I could not get up to the high dose required. My LLMD switched me to doxycycline in December. That was the only abx I could tolerate and it did work a bit for me. I seem to have plateaued. Dr. C wanted me to try azithromycin 1/4 tablet. I did that for two days and herxed pretty badly. I'm working up the courage to start it again. I also take Nystatin and cumanda.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
jamescase20
Unregistered
posted
man, I took 1500mg zithro for two weeks, no wonder I could barely walk!!!!
IP: Logged |
lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I'd been having severe neuro symptoms earlier this month but I'm now on plaquenil/biaxin and it's getting better.
My eyes are no longer rolling around, my neck stopped shaking back and forth, and the electric headache is gone!
Now I just feel sick, tired, and toxic.
Whoohoo!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[sleepy]](graemlins/sleepy.gif)
![[confused]](graemlins/confused.gif)
![[Roll Eyes]](rolleyes.gif)
Printer-friendly view of this topic