I am recently diagnosed with Lyme via a Western Blot (IGM+ on 23, 41 / IGG negative / ELISA neg.). I have been unwell for 6 months. Started with feeling light headed, then felt flu like, as if something was attacking me, panic attacks set in (at night only, would wake from sleep), as time has gone on left side wkness, muscle soreness, noticed loss of muscle on my left shoulder, cognitive fog/short term memory loss, shortness of breath some days (like someone is squeezing my chest or it is super heavy).
I have had a myriad of tests done: blood work galore, MRIs of brain/neck, heart looked at twice, all negative... then I get the WB back as IGM positive with co-infection with Chlamydia Pneumoniae, Mycoplasm.
I am a week into Doxy... feeling particulary bad today, headache mainly.
If anyone else out there is dealing with neurological issues, I would love to hear from you or hear your story. Thank you for your support. gracefullyteaching
Posted by Nicole2011 (Member # 30672) on :
we're in the same boat! I went thru everything your going thru. I started Doxy on 2/11 & i started feeling way worse than i was before.. But its normal.. You feel worse before you get better... i hadd terrible headches/migranes, felt a great deal of depersonalization... made me feel like i didnt know who i was... not even 800mg of ibprofen could help my headaches thats how bad it was... I start zithromax tomorow to help with the neuroligic problems.. we'll see how it does Posted by farraday (Member # 21494) on :
Sounds so familiar. I started out with doxy way back when. But after many tries with this and that, I finally found an excellent and experienced lyme doc so I am making progress.
For headache he gave me Fioricet and it works very well.
I have late stage neuro lyme, which is probably what you are "enjoying" as well. I have all the cognitive problems, halting speech, etc. I did have a SPECT scan of my brain which was abnormal and I, too, have CpN as do many of us.
My best progress came when I began the twice weekly Bicillin shots as well as Biaxin. But now I have stopped those and am taking Flagyl and Ketek. Usually the doctors have you use two abx at a time....they work better in combination.
The net of all this is that I suppose you have to tough out the side effects that occur as the bacteria die off. It takes quite a while with neuro lyme.
I am more than 18 months into treatment and expect to be at it possibly another year. I have been ill since the mid eighties, but only got the lyme diagnosis 18+ months ago. I am definitely getting better....just very, very slowly. I am extremely thankful for any progress I make!!!!
Posted by Haley (Member # 22008) on :
Good explanation Farraday. I have also been at this about 18 months. Many of my symptoms have subsided except for the cognitive/brain stuff.
The first time I took Doxy (in the beginning of treatment) I thought I was having a stroke. I actually went to the ER because I was so freaked out.
It will get better. Give it time.
Posted by TF (Member # 14183) on :
I suggest you take a look at the lyme disease symptom list on pages 9-10 of the Burrascano Guidelines found here:
You will see all the neurological symptoms you mention and many, many more.
This is one bad disease. It is basically a disease of the nervous system.
From page 4 of Burrascano:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system."
Posted by seekhelp (Member # 15067) on :
Yes, I got nearly all the stuff you did and that's how it started. It can destroy your life quickly and doesn't take long to do so.
Posted by Caniggia (Member # 30479) on :
I have Borrelia Activity along with Chlamydia pneu and Ehrlichia (mycoplasma!?) for me 7� years have passed. Don't give up. My body could stand all these years, well at least until 2008, before the white and red blood cells gave in completely to ehrlichia. Now I have constant fasiculations in my left foot, my upper lip has been getting smaller with obvious atrophy and I can't swallow properly. I have just gone on doxy for ehrlichia, taking it very slow so that the body can adjust to the med.
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