posted
I am not claiming to be in remission or anything, but I feel really good and could see either an end to abx for a while or a life I could enjoy even if I need to continue them. I thought I might post just in hopes of encouraging anyone crawling along, which really is what I did for the first three years of treating this disease. It has been 5 years since I began having symptoms (bursts of excess saliva, thick speech, episodes of extreme fatigue) that progressed to muscle burning, heart palps, tremors, twitches, facial sensations and twitches, stuttering, brain fog, derealization, etc. etc.
It was Lymenet, of course, that made me become suspicious but a very bright neuro who sent tests for lyme & co and brought back a positive babesia microti. This was, of course, after going from doctor to doctor to doctor. He then sent me to an ID guy who said we didn�t have that in Maryland (?!?!) but gave me a week of zith and mepron. On night three, I was awakened by a fireworks display in my head and the next morning I had symmetrical rings around my armpits and a blotch on my chest. I called the doctor who said it was not an allergy but because I was in treatment ( herx). I tanked again days after the mepron ended, made my way through two other ID practices, a gastro, rheumy, and finally landed at an endo. He said he didn�t think it was menopause as the ID guy had suggested, rather he thought I had lyme disease (Those ID guys are hard heads, he told me).
The endo sent me to a lyme sympathetic MD while I searched for an LLMD. The sympathetic doc put me on 400 mg of doxy. The doxy stopped my diarrhea, and brought down my rising liver enzymes. It also hurtled me straight into a long run of brain fog, anxiety, depression and depersonalization.I wrote an �application� and was �accepted� by the book writing LLMD in Maryland.
I saw him after 5 months of doxy. He was nice, very organized, expensive, and announced he thought I had bart. Two months of Rifampin and zith made some improvement for me, but he did not want me on the Rifampin any longer. We went on to try other combinations and he assured me I�d be well soon. I bought his book, many supplements, and tried his diet. After one year he told me this was residual damage and we needed to wean off the abx. I don�t know why but he was clearly ready to move me along. I was still pretty sick. He kept saying �You were such a mess when you came here�. I was STILL a mess. Meantime, my daughter had two CDC positive Western blots and many symptoms and needed help too. I decided to take a chance and see the much reviled lymemd blogger who is 20 minutes from my home and takes my insurance. Great decision.
He treated my daughter for about a year and she is now in great remission, loving college life. Her hands no longer turn corpse green, which is always a bonus, right?
He thought I had undertreated Lyme and we spent a year addressing that. I had a rough patch where abx I�d taken before started giving me allergy-like difficulties. My depression flared. We went back to add bart treatment and Cipro gave me major tendon pain. We tried mino and I couldn�t tolerate it .Factive seemed to help but in retrospect just probably had no effect.
I had a horrible patch last fall where my face was creeping, twitching, buzzing and numb. My thinking was slowing again and my anxiety shot through the roof. I wanted to go back to babesia treatment, but he was insistent we try rifampin/doxy/tindamax. I have been on that combo since December.
Today I have TINY muscle twitching, some facial sensations and an odd eye arrangement that he thinks is Horner�s Syndrome. I am exercising vigorously for one hour per day. My memory is awful, but I am other wise fine cognitively and for the most part emotionally. I do a very stressful job quite well. I have no speech problems, no strange rashes, no tremors, no muscle burning. I do have what I think are hot flashes and night flashes due to menopause, although we argue about that. I don�t often think about it (YAY).
My lessons:
1. Not all neuros are bad. 2. Not all endos are bad. 3. All ID docs are bad. 4. Not everything is lyme, but not everything is menopause either(LOL). 5. One man�s famous skilled LLMD is another man�s so-so doc. 6. One man�s bad guy is my helper! 7. Keep trying and trying. Even the famous fail sometimes and you need to get creative. 8. EXERCISE 9. Stay the course: I did not have substantial improvement until year 3. 10. Everyone is different.
I hope I don�t have to write and tell you I posted this prematurely. I used to read over and over looking for any help, hope and ideas, so I hope this brings you some encouragement.
Posts: 520 | From Maryland | Registered: Jan 2007
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posted
Thanks, Joysie. I hope you continue on your current path. And, I hope to be on path soon myself!
Posts: 217 | From Earth | Registered: Feb 2010
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Thanks for the update. I too am getting worst on ABX at this time, might mean I have had it for years.
But at least it explains all my memory aggravations along the way. I always thought my low energy and lack of expression all these years was due to amalgam.
Posts: 2087 | From NY | Registered: Oct 2011
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posted
Happy to hear you are doing well
Posts: 191 | From va | Registered: Sep 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
So glad you have improved! Why was the LymeMD blogger reviled? I like his blog and read it frequently.
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
CherylSue, I guess he presented himself in a way that many here didn't like. I for one am very grateful to him. My point just being, different strokes...
Posts: 520 | From Maryland | Registered: Jan 2007
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Can any one PM me the LLMD blogger site,post, ..He's prpbably to far to get to... Mine had me on Rifampin ,Zith and Doxy,,it took two weeks to find out he wanted 400 mg OF Doxy..
Would tindamax make that much difference??? What is it?
Just waiting ,praying ,hoping,,,something will kick in and help,,,Thanks
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Joysie-your mailbox is full
Posts: 1276 | From maryland | Registered: Jan 2009
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Beth:Cleaned it.
Posts: 520 | From Maryland | Registered: Jan 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks for you story joysie. I am glad you stood up for yourself (and your duaghter) and are so much better now. We all need to be proactive.
I also thought my hot flashes were menopausal. They weren't. You can get your hormone levels tested and try taking bio-identical hormones to see if the hot flashes go away. If they don't, better get to treating babesia before it gets worse.
It is really easy to attribute everything to menopause - migraines, hot flashes, depression, memory loss, pain in muscles, bad moods, insomnia.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I agree with nefferdun to get your hormones checked. I still have fatigue and memory issues. Turns out my DHEA is extremely low and my pregnenolone (memory helper) is also.
Thank your for your happy story, I cannot wait to feel that way also.
What do you do for exercise?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
Nefferdun, you may be right, my doc thinks so. Pretty sure he wants to go back to babesia next. I will PM you some questions.
Jamers, I bought the cheapest exercise bike Walmart had to offer (LOL) in case I didn't use/like it .After trying walking, going to a gym, etc., my exercise bike plus some small weights for upper body stuff while I puff and peddle has been great. I can also read or listen to my iPod or whatever and that is helpful to me. I get up early to do it so I have no excuse at the end of the day. Started with 9 miles with no resistance to 22 miles at medium resistance. I am no Lance Armstrong but I'm getting there.
Posts: 520 | From Maryland | Registered: Jan 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
WOW! That is amazing. I am doing good when I can climb two flights of stairs. The exercise things are in the attic and I get more exercise than I can handle just getting up there. But I do ride my horse. That is easy. I SIT on him and he does the work.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Joysie - Love these posts; keep on posting. We need well people here to encourage the ones that are plugging along.
Posts: 2232 | From USA | Registered: Aug 2009
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