Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
March 3rd was the first anniversary of my "adoption" of my walker. I call him Johnny Walker.
A year ago when I started a new drug regimen, I was not anticipating needing to use the walker a year later.
It's been three weeks now that I've been on Flagyl and have been on short term disability.
I try to look for every little ray of encouragement I can, but the truth is I am worse off than I was a year ago.
I spend most of my time in bed; in fact, I rarely leave my bedroom.
Anyway, thanks for letting me vent.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Good Morning,
I am really sorry to hear that you are having such a hard time!
How long have you had lyme? Do you have the lovely, evil co-infections?
I have had it for 5yrs and I am one yr into treatment. It is hard to see these anniversaries go by and not see the lack of progress that you hoped to see. And I am not dealing with the level of difficulty that you are facing.
If it is any consolation, I have been doing 5 day pulses of the cyst-busters over the last yr. I find flagyl and now the tindimax really are a challenge, especially the herxing and for me it makes me more depressed. It sneaks up on me after a few doses and bam I am down.
Once I get the cyst-buster cleared out of my system, I do see a bit more recovery. I hope that you are have the same experience. This whole deal is overall bearable to me if I can see even an inkling of progress.
You must be killing those buggers! They are so evil going out screaming like demons. On the cyst-busters I get these striking pains in my rear end just like someone has kicked me. I am like kick me you jerk you are on the way out.
Anyway, I will pray for you, especially everytime I see you post.
Do you get netflicks or cleanflicks. They send you movies and you don't have to leave the house. We like the cleanflicks as it has opened up a selection of movies we didn't feel we should watch. They take out sex and language to get them down to PG.
(Although I once during Flagyl torture watched a really violent terrorist movie that I usually hate just to distract me from the pain. Incredible.)
Maybe this got to long. All's to say, we are with you.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hiya Monica.
You're such a fighter. I'm glad you decided to take a break from working and can't believe you hung in there so long!
Any chance you could get an Rx for some kind of physical therapy? To strengthen specific muscles?
Give that Flagyl some time.
Just being in bed may be discouraging in and of itself considering your lifelong determination to keep working. Char has a good idea. Rent some silly movies. Invite a good friend over for a pajama party and eat popcorn.
Visualize spirochetes withering.
Remember too that Flagyl itself can cause depression; combine that with suddenly stopping your longtime employment and not being where you expected to be one year post-diagnosis. Please lean on us for support, talk to your LLMD, reach out to friends and family LOTS, and don't lose hope.
You're made of strong stuff.. I am rooting for you.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Thank you for your kind words of hope, advice and humor.
I have been infected since at least 1988. Was on abx off and on from 1995 on, but in 2003 I wasn't on any at all, plus I was in a high stress job, and in my opinion I think that gave the spirochetes the upper hand.
No coinfections. LD seems to be enough!
When I started using a cane in 9/03 it was to help with my balance. Now it seems that the walker doesn't just help me with balance, but holds me up. That is tough for me.
Too early for PT until we get the keetes out of my CNS according to the doctor.
Thanks for your encouragement. It's helped a lot.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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bettyg
Unregistered
posted
Hi Monica, sorry to read your downhearted thread.
I went to the cane this past month. It does help so much on my bad, left PAINFUL GROIN area.
Discouraged; yep, me too. Had this bugger at least 35 years, and finally dx 1.5 yrs. ago. No rx meds helping me.
I had a terrible herx on flagyl combined with the other 19 rx meds they have me on. You can read it in medical, "I'M OK, police just checked up on me." I posted it on 2-9 as it was happening & there may have been 1 wk. of discussion of it.
I agree, rent the funny movies that give you BELLY LAUGHS, etc.
Are you photos written on &/or organized? I type labels for mine; copy/paste & it sure saves time. Just thinking of something helpful to you and or others.
Best wishes until you are back on your feet & recovery.
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hey Monica,
I am sorry you are having such a rough time. you deserve better than that!!
it's really tough to be out of step with the world. they are scurrying about doing lots of busy things and you think to yourself, what's wrong with me?
even those of us who are out working and leading a less isolated life, are asking the same questions.
it is so difficult to be patient. there is nothing else to be done since you are taking your meds and getting rest. in the rooms of aa, there is an expression, "Let Go and Let God."
i am having a crummy day, myself, and know that letting go is all i can do.
each day is a new one. let's hope tomorrow will be a little better than today. if not tomorrow, then the next day.
that's all i got.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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Just Julie
Frequent Contributor (1K+ posts)
Member # 1119
posted
[ Use every weapon in your arsenal. The suggestion for video or DVDs is a good one. I just rented and loved this most precious one, The Wild Paragraphs of Telegraph Hill. See it if you want to see one that ends on a positive note, I just loved it. And I loved CRASH - glad it won last night.
OptiMisTick For You
OptiMisTick----I believe the movie is called "The Wild Parrots of Telegraph Hill" (not paragraphs). When I googled it just now, another person wrote "paragraphs" instead of "parrots" in his blog. Hmmm. Must be a brain twister. But, I knew that you meant parrots, even though I haven't seen the movie, I guess somewhere in time I'd heard about it.
Funny how us lyme brains work alike, eh?
-------------------- Julie Posts: 1027 | From Northern CA | Registered: May 2001
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posted
I wish you strength my firend. It is so hard, however, you are a fighter. Everyone here is a fighter. Not easy, considering all of the lives we have lived prior to this. Get movies, radio, cds. use your computer. I play millionaire on line, jeopardy and sudoka. Though eyesight is poor, I do it. I send email e cards to keep up with everyone. I write a lot of posts here. Some are a little down, when I have my own problem and looking for answers and need to vent. A lot of times, I try to send someone a post to give them encouragement or to share maybe sometime of info that I had from being a nurse to help them. I try to do one kind thing a day or more despite my suffering to keep me focused" I do count." I will try to get over this no matter how long or how hard. Stay focused. stay strong. Reach out for help. I wish you a stonger day and hope toward recovery.
Posts: 719 | From Delaware | Registered: Jan 2006
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Hmm. I did see a segment on those Wild Parrots on CBS recently.
Didn't know about the Wild Paragraphs. It makes sense though, because what else would you be telegraphing but paragraphs?
And I do often call the spirochetes "Parakeets" and they might be related. Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Monica
you hang in there,flagel's a beast.
You will get better some day .I know it's hard right now but it won't always be.
I rented the movie parrots of telegraphill.
I won't recommend it.
Yes dana gives it 2 thumbs down
I won't tell you the end but it did not make me laugh, I cyed like a baby.
I do netflix. I go to the webb site and make a list of the movies I want to watch. Ya keep them as long as you want.
When you are done-pop it in the mail and the next one on your list comes in the mail.
I like to rent mindless comedy's like "forest gump:- I can identify with that charcater-simple minded but without the tremndous luck he had.
Get someone to hook up a dvd/tv in your bedroom This has saved me many a day.
posted
Thanks Just Julie. That laugh felt really good. Its been a very painful heavy last couple of weeks. That movie is great. Take care All Joyce
Posts: 905 | From Santa Cruz,Calif | Registered: Aug 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Monica,
I probably have asked you this before but have you had a spinal tap and the fluid tested for co-infections?
My blood was clean for all co-infections but I kept getting worse with lyme treatment, even IV.
A spinal tap yielded a positive PCR for mycoplasma, now I'm on the long road to recovery.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
We have indeed discussed it before, Mathias. No spinal tap. Igenex testing for coinfections was negative. I tried Artemesia (sp?) in case of Babs, but it had no effect on any symptom.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
Poor Monica, she has been upstaged by parrots!
Well, don't know if the movie is an upper, but I sure got a laugh over the wild paragraphs. A really wonderful screw up. And typical lyme brain mistake, in my opinion.
There is another cheap source of entertainment, in talking books. My library has a lot of them, think commuters use them as well as people who have vision problems, etc.
I used to know someone who did "Art therapy" which always puzzled me. How could art be therapy? Have since changed my mind about that. Adding color to a blah life does help. Can use cheap materials, do temporary things that you stick up on the wall, look at a while and then toss, create something new. Cheerful colors and interesting shapes can improve the visual surroundings. Don't worry if you don't think you have an artistic ability. You might be pleasantly surprised.
Posts: 8430 | From Not available | Registered: Oct 2000
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