posted
Ok I am trying to remember everything as clearly as possible, but, welll the memory is not so hot.
I printed out the Lyme treatment guidelines to bring with me and of course forgot them at home. SO I had to go on memory.
Yes I went through all the tests...reflexes, touch finger to nose etc. WHen she asked why I was there I gave my story...neck pain, headaches fatigue, and the neuro symptoms..went to GP and tested positive for Lyme. Which I saw for the first time today
IGG Negative all bands IGM 2 out or 3 positiveI think band 28? and 41? (can't remember which were positive)
SO she said the dr. followed CDC guidelines with the antibiotics and she agreed with GP for giving me 2 xtra weeks of doxy when I wasn't feeling better (which would be 5 weeks total)
I asked why I wasn't feeling better still if that was supposed to "cure" me...then she started with fibromyalgia explanations and such. I just listened politely.
She said she was sending me for an MRI and if there were any white spots she would then order IV antibiotics. If no white spots she would reccommend the spinal tap (which I am totally not on board with).
I asked about co-infections and she ordered more bloodwork for me Here is what is on the script (can't make some of it out. she did explain them but I can't remember all so any input would be appreciated)
Anaplasmosis PCR CBC lytes AST ACT or maybe ALT ESR EBV Panel Ehrlichiosis panel RMSF Panel (which she didn't feel I was sick enough for but tested anyway)
Does not believe in the urine testing.
I asked her doxy was enough for Lyme and she said it depends on how bad it is and other infections. She said that doxy has been known to have antiinflammatory properties so that may be one reason why I feel better on it.
She prescribed me 4 more weeks of doxy which is going to take me beyond the LLMD appt. The Neuro wants me to come back in a month with all the test results in...blood and MRI...and at that point I will have already seen the LLMD.
So I feel that the appointment met my needs...more doxy until LLMD appointment and she didn't totally put out the idea of further treatment. I am however really looking forward to meeting with the LLMD. I am hoping to have all the other bloodwork back and have the MRI done and results back before I go there. I will definately be getting copies to bring with me.
Posts: 193 | From New Jersey | Registered: Oct 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's good news. You're blessed to even have a neuro look at a Lyme test. I'm impressed. None I've ever consulted with care.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Wow! I wish I had found a neurologist like that! Awesome. Even the Mayo neuro thought I was crazy. I am also very excited to hear Doxy is her preferred treatment! I have been on IV cefapime and it was too toxic for me (per my llmd).
He put me back on 200mg of doxy and I am taking a probiotic and a liver detox vitamin. the vitamins seem to help me tolerate the oral doxy alot better.
I am back on doxy for only 8 days and have huge improvement. I am ready to go back to work soon.
The only issue I have is I get to foggy and very dizzy in the mall. do you have trouble in the mall?
THANKS for posting this! Great. Glad you are getting treated by one of the very FEW open minded neurologists!
ps- does she think the white spots indicate infection? The Mayo neuro saw my MRI with alot of white spots but said since no MS, he was not concerned and no further mri would be needed in the future.
Posts: 63 | From Clarkston, MI | Registered: Sep 2008
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You know I went into the appt very guarded, almost expecting the brush-off and left with a smile on my face.
The 2 things that turned me off a bit:
Not so much saying chronic lyme doesn't exsist but saying things like some people just hurt all the time. Thats when she started talking about fibromyalgia.
The other when she talked about "some doctors" that overtreat with way too many antibiotics.
Otherwise I feel that she listened to what I had to say, answered my questions, explained my western blot to me and gave me the doxy.
I never told her that I had an appt with the LLMD, but I guess they will guess I am getting some sort of second opinion when I request the copies of the bloodwork and MRI.
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
Hi Jenny...no problems in the mall or me. Mostly my trips to the mall include me running my kids through quick enough not to hear..Can I have this? 100time!
SHe said that the white spots are indicative of neuro lyme and that is when she said she would consider the IV. Something with an R...I forget the name of the antibiotic.
Great news that you can go back to work! I work in a preschool and sometimes its pretty tough crawling around on the floor with the little ones. The doxy & lots of advil have been doing the trick...and probiotics!
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
Forgot to add...she told me that as long as I am feeling bad...DO NOT get a flu shot. I was actually thinking about it this year too, but not anymore!
Posts: 193 | From New Jersey | Registered: Oct 2008
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posted
At least you have some doxy to get you started till you see your LLMD. That will help jump start your treatment.
Other then that, it sounded an awfully lot like the typical neuro, IM, hmo drs, cdc response...take some doxy, youll be fine, and if not, its probably fibroy or an inflammatory response, blah, blah, blah, post lyme syndrome, blah, blah, blah, etc.
If you dont expect much from your drs, you wont be disappointed when they dont deliver... Wouldnt it be nice if we could hold our drs up to a higher standard? Heaven help us if we have neuros who are also LLMDs...wow..would that be something?
Posts: 514 | From . | Registered: Apr 2008
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