I had undiagnosed Lyme for approximately 5 years. To some degree, I've been able to function though in a constantly confused / flustered state. I've been on antibiotics now for the last year; clarithramyocin and cefuroxime axetil.
Really though, I don't feel any better. The "pressure" has gone away but I still have almost all other neurological difficulties. Plus I have no focus, newly awkward social miscues, am very jumpy / overemotional, and sometimes paranoid and obsessive. I'm young, was bright, and this has destroyed my post-college life prospects. Financially, I'm nowhere near ok.
I don't really think I can live like this for the rest of my life.
So onto the happy stuff: how long till someone needs to switch ABX? Is switching even worth it?
Can I expect to get my memory back, my cognitive functioning, etc? One year is quite a while for no real improvement.
Is it possible to have this severe of an infection and recover?
Thanks anyone,
fghghghg
[ 08-17-2010, 09:44 AM: Message edited by: thehause ]
Posts: 372 | From west of the mississitty | Registered: Jul 2009
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Dear thehause, Welcome to the supportive LymeNet Community!
You CAN get healthy again AND achieve long-term remission of (what sounds like) your chronic Lyme neuroborreliosis and synergistic Bartonelliosis co-infection. You do not have to suffer endlessly with chronic Lyme disease.
It's most likely you've not experienced any significant improvement because you've not been working with an experienced ILADS-trained Lyme-Literate M.D. (LLMD) or LLDO who follows the ILADS's treatment guidelines produced by Burrascano (16th Edition, Oct 2008).
You'll need to be very active in your own recovery. Posting here was a wise step. There's lots to learn.
Print this 37-pg monograph, put it in a 3-hole binder, and begin reading & highlighting as you are able. Important supportive therapy you can do yourself now begins on Pg 27. Re-read this document again & again.
The important paper below was presented at the 44th Annual Meeting of the Infectious Diseases Society of America in Canada, October 2006. It's written by an ILADS member and explains the stealth spirochete that causes Lyme disease and enables parasitic co-infections:
You may feel better to know that thousands of people have experienced many of the same challenging symptoms you have of untreated (or under-treated) chronic Lyme disease. In the excellent essay below by a wonderful ILADS doctor, you may be surprised to read much about your own life!
posted
Clarithro + flagyl or ceftin + flagyl would likely be more helpful with neuro symptoms. Flagyl must be used carefully and you need a LLMD/LLDO who can treat you in a step-wise fashion for Lyme/ and co-infections eg Bartonella and Babesia. Dr. B's treatment guidelines are the best single reference on this subject and that is why ILADs puts them up on there website. I have a copy on every workstation. From personal experience 2 meds that have been very helpful for neuro symptoms, and I am talking about memory and recall issues, word search issues, attention deficit issues, depressed mood issues-- have been flagyl and bactrim added to clarithromycin.
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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BackinStOlaf
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Beach: I am on Bactrim and Clarith right now- just started yesterday.
I still have my flagyl to pulse. When I pulse it, should I stop the other meds for those days, or take them all together?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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