posted
Note: Post reformatted at bettyg's request.
I live in RI, am looking for a new LLMD, and am willing to travel quite far to find one who may be able to help me.
I have been treated by two different LLMDs over the past 18 months in MA and CT and have only become worse with the exception of a handful of "honeymoon" days at the beginning of two or three antibiotic courses.
In both cases, the LLMD reached a point at which he didn't believe there were additional viable, safe treatments to attempt, but I know that is not the case from reading about an abundance of other medications and successful treatment methods described online.
All of my symptoms came on gradually and keep getting worse over time. I primarily suffer from:
- Cognitive dysfunction (went from getting an engineering master's degree to having difficulty putting a coherent sentence together over about 2 years)
- Constant fatigue (can't sit upright for more than a short while without having to return to bed)
- Muscle pain throughout entire body
- Restless sleep
Of course I have tons of other symptoms that come and go such as cold sweats, abdominal pain (left side only), head and neck aches, and distorted/numb sensations on the left side of my face and back.
All blood tests are normal, and seeing a neurologist and getting an MRI revealed no other conditions.
Attempts to treat me with the following have not been successful.
Herx reactions occurred with a few of the medications, but were quite mild (probably just when I was cycling) and there was never an improvement after the herxes.
- Doryx (Doxycycline) (one month)
- Tetracycline (one month)
- Biaxin + Ceftin (one month)
- Mepron + Azithromycin (about 7 weeks)
- Fluconazole (just over one month)
- Minicycline (one month)
- Bicillin injections (10 weeks)
In addition, prior to seeing an LLMD and getting a clinical diagnosis I was on 12 months of Cipro (with a few weeks of gaps) and 1 month of Levaquin for a seemingly unrelated prostate infection.
This infection was triggered by me taking just two days of Doxycycline for a small cyst.
An attempt to treat the infection with Bactrim was made, but it caused chest pain and a racing heartbeat so I didn't continue with it.
I had major reactions within about 24 hours each time I went off of the Cipro, sometimes lasting for days, but not so much when I was on it.
The course of Levaquin finally cleared the prostate infection, and I had a day of increased suffering after I went off of it before I returned to my baseline condition at that time.
My previous LLMDs did not order co-infection tests but an attempt to treat me for Babesia was made with the Mepron+Zitro based on my symptoms. Western blots were negative with both IgeneX and Quest.
I am on Mepron + Biaxin right now, but will soon be on Biaxin + Plaquenil.
My current LLMD will not explore treatment options beyond that, so I need to start looking for a new doctor now since I know there can be a long wait for appointments, my current medical and prescription coverage won't last forever, and I don't want any more gaps in treatment attempts.
Thank you all in advance for your suggestions!
[ 06-25-2009, 02:12 AM: Message edited by: Greg F ]
Posts: 10 | From RI | Registered: Oct 2007
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posted
Thanks Meg, Nancy2, and bettyg for the replies.
Nancy2: Your mailbox is full and I can't respond to you. Posts: 10 | From RI | Registered: Oct 2007
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EtherealGirl
Unregistered
posted
I'm very curious to know who your doctors were as well, since I'm in the process of finding an LLMD in New England. Good luck to you Greg!
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
PM sent!
Posts: 1487 | From New England | Registered: Oct 2000
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
Mail box swept clean!
Posts: 1487 | From New England | Registered: Oct 2000
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