LymeNet Flash: Lyme and abx: Do you all know?

This is topic Lyme and abx: Do you all know? in forum General Support at LymeNet Flash.

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Posted by SAK (Member # 7387) on :

I was reading-up again on Lyme and I read something that made sense to me. It sounds like what's happening to me!

Here it is:
"The ability for Lyme Disease to persist and even worsen despite swallowing pink pills [abx] accounts for why some Lyme

Disease sufferers experience horrendous relapses after they discontinue antibiotics, often including new symptoms they've never had before."

This sounds like me!! I'm sooo much worse (new symtoms) after Flagyl taken in June and Levaquin stopped a few weeks ago. I can barely walk at all now.

I'm still no better. So, it's probably I'm just worse permanently. It can't be just a herx right?

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Bye for now,
SAK

Posted by Starphoenix (Member # 2402) on :

SAK: Please don't lose hope. I don't think you're beyond help!

I don't know how long you were following your regimen. Maybe you need longer treatment, or a better combo. Maybe you need to focus on co-infections?

That's what I've heard. I've been ill for 20 years now, and I'm finally going to get proper treatment. I had some before, but it wasn't sufficient.

I always got worse after insufficient treatment.

Hang in there.

Hugs, Steph

Posted by treepatrol (Member # 4117) on :

Levaquin causes bad muscle pain and can cause tearing of ligiments,tendons and it stays with you a long time.

Posted by griswoldgirl (Member # 5365) on :

I just saw my LLD yesterday. Due to liver disease (NASH) I am no longer able to continue my abx treatment presently. I did 8 months of IV, flagyl, mepron etc with some results but nothing astounding. Bear in mind though we tracked my first signs and symptoms to when I hiked the appalachain trail in the Northeast-RI, VT, NY, NJ--LYME COUNTRY--back 15 years ago. I fell ill with flu like symptoms and was diagnosed in Arizona, where I moved right after several hundred miles on the trail, with CFS.

This spawned diagnoses of over 25 varieties including: MS, Lupus, fibromyalgia, OA "way beyond my years" , interstital cystitis, DDD, DJD etc etc--over 45 docs later and 7 states I was diagnosed two years ago this coming Feb.

Sorry to get off track--I have developed several new symptoms and am now getting slowly worse after being off abx for 4 months. My LLD basicaly said that I never had a vast improvement with the abx. I, too after IV was on levequin 800 mgs a day plus ketek with flagyl pulse from dec to april on and off due to liver panels going up. My muscle and tendon pain is still with me.--He went on to say that we may be at the stage with me where yes I need more treatment but it is not worth risking a liver transplant. It is about acceptance, treating the symptoms (which is hard because all meds must be approved by liver doc and he is not very flexable--I have had to stop anxiety meds, estrogen-had a hysterectomy in '99-breakthrough pain meds, antidepressants, no tyleno, no advil, no asprin) At this point my LLD is talking to my liver specialist and will decide what to give me to make me more comfortable.

unfortunately those of us with late deceminated disease are in uncharted waters. It is not known why some of us respond after a few months of IV or orals and make a huge comeback and why some of us may take years to get better and some of us unfortunately have to adjust to living with the consequences of this disease. It sucks.

I wish you luck.

How long were you on abx? How long have you been ill? Have you been on IV? I do not know your background. I pray that this is a temprary set back for you. Like Steph, I have been ill now for about 16 years. The glimer of hope that the abx may cure me was a great rainbow to ride for a while. Now I am taking care of the one liver I have trying to cleanse it, eat right, lose weight and get my liver values down.

take care

Cathy

Posted by SAK (Member # 7387) on :

I've been sick 18 years. Flagyl I took for 5 days. Levaquin for 3 weeks. I'm on IV clindmyacin 4 days and ketek 800mg for 10 days.

I've noticed some symptoms improve; other gone. My walking is still bad though. I would love to be more mobile again. It was my last symptom really. I don't know if that has anything to do with it.

Thing is, sounds like abx CAN cause symptoms! I did not know that. Did you?

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Bye for now,
SAK

Posted by rosesisland2000 (Member # 2001) on :

Hello and good luck to you...IMO, what you are describing is a "classic Herx" reaction.

I'm here to tell you that Herx's will go away in time as you either get cured or get into a long remission.

I hate to say the "R" word (remission), however, I believe that I am now in a remission..."knock, knock, knock on wood" as I have only been in this state for about 5-6 months.

I've agressively, IMO, attacked Lyme disease with over 3 years, that's over 36 months of antibiotics (abx) for me to get to this point.

I know that 36 months sounds like "forever", however, it took me almost that long to find the correct diagnosis. So, for me, that didn't nor doesn't sound like a very long time.

Just hang in there, get a physician who is willing to give you long term and strong enough abx and I believe that you, too, will be where I am today.

I'm doing things now to detox my raveged body...and I'm feeling well with just some residual fatigue. I figure the fatigue just comes with the territory.

Best to you and yours,

Rosemary