lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Biaxin, the drug of nightmares, false hopes, and some relief.
For all those who dont know its where I got my name. Herx from hell followed by some mild improvement and then wham bam no thank you mama vertigo and MCS to this day.
Stayed on the stuff for almost 2 years strait. Tried to quit 3 times. Each time the same thing.
Air Hunger Weakness Burning and twitching in my feet Sore muscles Encephalitis like feelings
Now mind you I still have these on the Biaxin but its not that bad.
So this summer I said thats it! I hit a plateau. I quit. Began to work out and everything. I was comfortably miserable. "Ive been worse." so I said.
I vowed to only take Flagyl. I know I know....but it doesnt make me feel like crap, in fact I feel mildly calmer on it.
Summer ends and the months pass
September October November December January Febuary (present)
Around Jan I knew something was off. When I worked out I couldn't move the next day. Besides that I felt as if someone dropped anvils on my feet. I could die!!!!! The woman at work didnt know what to think. "Oh there he is, that guys nuts, he had problems,, yada yada yada.
So I said "ENOUGH" Im gonna take the darn Biaxin again.
And poff!!!! Another herx. Weird bug feelings. Twitching Sweating Head feeling better. Pain in feet gone %75!!!
Oh my sweet Jesus. What have you done You have made me a drug addict of unworthy proportions.
I couldnt buy this stuff if I wasnt working $300 a bottle for a little poison. Youve got to be kidding
So here I sit and type and ponder those yellow vanilla pills My mouth waters for the acid metal taste I know they will bring me.
But my heart years for the pain relief that percs cant touch. Muscle relaxers dont give and advil fails.
Oh my miserable Biaxin. And my Lyme or Mycoplasma
Flip a coin.
Even the LLMD doesnt know.
Hmm, Ohh, really, ahh try this and that.
Im getting older and so sick of the pain.
I look at wrinkled folks and ask.
Do they want to ampuatate their feet cause they hurt so bad,.
And then I think.
I think that I have done this before.
Perhaps Ive had abused some others in a past life a little too much.
And now I pay $5 and 35 gruling hours for those vanilla yellow pills.
Oh Biaxin, why have you forsaken me.
Posts: 2905 | From New England | Registered: Sep 2004
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adamm
Unregistered
posted
Wait, lemme see if I got this straight--
Biaxin is the only drug that
relieves your symptoms, but they just come right back after you
stop? Sound like you're killing the bugs, getting better after your
herx like your supposed to, but omitting some crucial element
of your treatment.
What other meds have you been on? I know my LLMD usually
prescribes Biaxn in conjunction with at least one other med.
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I think the same thing often: I must have done some very bad things in a past life to deserve this.
I am taking Biaxin, but never noticed much of a herx on it. I've been on it for quite a while now.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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adamm
Unregistered
posted
Disturbed--noticed any improvement? How long
have you been on it, and what have you been taking it with?
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Biaxin's not good for bart? Because my LLMD prescribed it with
Cat's Claw to treat that infection.
I think the drugs of choice are the quinolones or Rifampin. Maybe Biaxin does work on it.....sorry.
I don't have bart, thank goodness...so what I know about it I learned here.
Lymeherx...why not take Biaxin or some other drug with 100 or 200mg of doxy per day? Just throwing that out there....?
When I was going through treatment and I herxed hard, I would stop the abx for a day or two. That's all you have to do. Some drs don't agree with that...but that's how my LLMD does it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I dont know what to think.
Im wondering now if 100MG of doxy will have the same effect as 2MG
Thats right, even if I take a tiny tiny amount of doxy now I get really weird feelings in my head and burning skin.
Its not so much so the doxy I think it is the immune systems reaction to it.
Posts: 2905 | From New England | Registered: Sep 2004
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Yeah it's such a tough disease with so many different treatments.
I took Biaxin with Plaq for almost 6 years and really never felt much better, had some good days but mostly bad days.
On Azith and Amantadine now going on week 5, lot of herxing but I'm in it for the long haul, don't care how long it takes or how bad I have to feel, I will beat this!
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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adamm
Unregistered
posted
So is the consensus that Biaxin generally disappoints?
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Also, I would not suggest to anyone to not take Biaxin, just giving everyone a little history on my treatment so far.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
MusicMan,,
Sounds like me, even the music part. What really stinks is my Lyme keeps me from my music. Thats the toughest part. I also have to work a job just for the insurance, that also sucks.
By the time I get home I just go to sleep. You can guess how I feel about that.
After my other Biaxin herx the other day I had about 3-4 hours of feeling better then I had in 6 months!!!!
I was like "oh this is how it feels to be "normal." Then I got upset because I knew what was coming.
I think I will just overdose on Welchol thankyou
quote:Originally posted by MusicMan: Hi
Yeah it's such a tough disease with so many different treatments.
I took Biaxin with Plaq for almost 6 years and really never felt much better, had some good days but mostly bad days.
On Azith and Amantadine now going on week 5, lot of herxing but I'm in it for the long haul, don't care how long it takes or how bad I have to feel, I will beat this!
Steve
Posts: 2905 | From New England | Registered: Sep 2004
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
Maybe the biaxin is gettin' at the cell wall-deficient ("L-form") of Bb, but maybe a combo will help if it's morphing to cyst and spiro forms immediately upon starting the biaxin. Then changes back again to cw-deficient when you're off the drug? I don't know- just thoughts.
-D.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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I agree and think it works too, I just think the amount of time I've had it was probably why I didn't get great results.
I would still be taking it if the Plaq had not caused Pancreatitus.
lymeHerx001
Hello fellow musician!
I had to stop working about 6 years ago, I got so bad I was falling down. I did appliance repair and really liked it, plus I was in a three piece Blues Band, I played Bass.
I still play but just at home and do a lot of recording. If you click my link, everything I did on that site I did while I had Lyme.
I have times when I can't play like right now, going on about 4 weeks and really hate that part but when I can't get up, I can't get up.
Hang in there and keep the faith.
Steve
Posts: 406 | From Rhode Island | Registered: May 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Dawn I think youre right. This is why I took the Flagyl for months. Plaquenil didnt do much.
quote:Originally posted by Dawn in VA: Maybe the biaxin is gettin' at the cell wall-deficient ("L-form") of Bb, but maybe a combo will help if it's morphing to cyst and spiro forms immediately upon starting the biaxin. Then changes back again to cw-deficient when you're off the drug? I don't know- just thoughts.
-D.
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Steve I did check out your music. I gotta tell you I do respect that you didnt let your disease get your hopes down... You write very upbeat music! Im into more darker stuff and jazz but as ive gotten older I respect ALL musicians and artists.
quote:Originally posted by MusicMan: Hi LymeToo
I agree and think it works too, I just think the amount of time I've had it was probably why I didn't get great results.
I would still be taking it if the Plaq had not caused Pancreatitus.
lymeHerx001
Hello fellow musician!
I had to stop working about 6 years ago, I got so bad I was falling down. I did appliance repair and really liked it, plus I was in a three piece Blues Band, I played Bass.
I still play but just at home and do a lot of recording. If you click my link, everything I did on that site I did while I had Lyme.
I have times when I can't play like right now, going on about 4 weeks and really hate that part but when I can't get up, I can't get up.
Hang in there and keep the faith.
Steve
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Today was the worst.
I took 1/2 a BIAXIN PILL
4 hours later I had some nice feelings on my skin, my pain went away for 5 minutes. Then
The fatigue started, I had trouble walking, my eyes got red, I feel in the hall way. I wanted to die.
I went to the LLMD after work and fell asleep in his office. I gave him my cholestyramine light and said I have no use for it and then said that I felt terrible.
I told him i felt like I had bone cancer and we neeed to talk about managing these herxes. He told me I dont have lyme anymore based on Iginex. Says who?
The biaxin almost killed me today. I took 4 welchol for a mop-up but its still doing nothing.
The herx cleared about 12 hours later. I came home from the LLMD and slept 3 hours.
There has to be something for these herxes.
Im praying actos is the answer. Im taking chlorella allready. I need to stop the cytokine overkill.
I allready wanna die with these horrible herxes.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
You're on the right track considering MP. The long term high dose antibiotic treatment you've been on has no doubt eliminated any normal bacterial infection. This was confirmed by your latest Igenex tests. It's the inflammation caused by the cell-wall-deficient forms that is probably continuing to make you feel ill. MP is designed to eliminate the source of that inflammation. I bet you'd know if MP were the answer for you within a few weeks of trying it.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007
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posted
Sorry your having such a tough time. I don't know if Biaxin would have helped me or not because I can't take any of the Macrolide antibiotics.
I started antibiotics three years a go and I started with Doxycycline. It about killed me. I couldn't even take 200mg a day. Since then I've been on other antibiotics. I've always had to start really slow and low dose.
About six months a go I again tried Doxcycline, and this time I am much better on it. I also take Cephelaxin with it. It's the first time I've been able to tolerated Doxycycline and the first time I've ever been able to take two antibiotic's at one time.
I think I finally got the bacterial load down enough to take the antibiotics without feeling like they were killing me.
I also think Bartonella is a huge problem for me. So make sure you treat for co-infections.
It does get frustrating feeling so crappy all the time. I wish there was an easier way to do this for all of us!!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Kathy you just kept going low and slow?
This is what I did with the BIAXIN, I was on it for a year strait though. I hit a plateu.
I was sick of taking it all the time and thought that I needed a change. SO this summer I stopped. I started to take Flagyl. Took Flagyl for 4 months.
Now I dont know if the bacteria kept growing or not and came back or if the Flagyl caused some of them to come out. I dont know anything anymore other then pain and an ignorant LLMD.
quote:Originally posted by aiden424: Sorry your having such a tough time. I don't know if Biaxin would have helped me or not because I can't take any of the Macrolide antibiotics.
I started antibiotics three years a go and I started with Doxycycline. It about killed me. I couldn't even take 200mg a day. Since then I've been on other antibiotics. I've always had to start really slow and low dose.
About six months a go I again tried Doxcycline, and this time I am much better on it. I also take Cephelaxin with it. It's the first time I've been able to tolerated Doxycycline and the first time I've ever been able to take two antibiotic's at one time.
I think I finally got the bacterial load down enough to take the antibiotics without feeling like they were killing me.
I also think Bartonella is a huge problem for me. So make sure you treat for co-infections.
It does get frustrating feeling so crappy all the time. I wish there was an easier way to do this for all of us!!
Kathy
Posts: 2905 | From New England | Registered: Sep 2004
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posted
Yes I just keep going low and slow. It seems to work for me.
Is it possible to try other antibiotics other then Biaxin? I've been rotated on quite a few different antibiotics in the last 3 years.
Again also make sure your treated for co-infections!
Hang in there!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Thanks for the support. That's why we after all come to this board. It isn't everyday in the real world where people care to have compassion and empathy for others who are sick with this horrible disease.
Others really dont know. I cant blame them. They are living life.
Posts: 2905 | From New England | Registered: Sep 2004
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adamm
Unregistered
posted
Wait, Lymeherx,
Was Biaxin the only thing you were on then, and did it help?
Also, what infections did you have and for how long
lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Here I am taking the BIAXIN daily again.
I felt some strong neuro herxes today and started to cry at work. No biggie.
Then I became super energized and started running around doing tasks.
The only thing that SUCKS is my sinuses are more dry and my VERTIGO is worse. I hate this freakin vertigo allready!!!!!!!!!!!!!!!!!!!!!!!
I wish that I never had this.
I long for the days were I can enjoy a scented candle or incense or cologne. uhhh, Im getting depressed again.
lh
Posts: 2905 | From New England | Registered: Sep 2004
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
lymeherx, I can relate to the terrible symptoms of die-off and the effects of major inflammation.
Have you considered seeing an ND who can help you manage the herxes? Someone who knows about lyme?? My LLMD works with many ND's and it is really helpful.
I know I've written similar information to you before so I won't go into all the details but some things to consider: You must take actos and cholestyramine together if you can't tolerate cholestyramine alone. Actos is part of the protocol for biotoxins but you will need to take cholestyramine too.
There are tons of things you can take to help control inflammation and that could really help you tolerate doxy. Here are a few: (check with your doctor before taking of course) fish oil - high doses serraflazyme digestive enzymes between meals
Consider drainage remedies, I was totally miserable until we got the debri to move out of my cells.
Some brands: Pekana detox kit Heel Gemmo remedies Unda
Think about far infared sauna.
I'm sorry you are having such a hard time. I was absolutely miserable and didn't know how I was going to manage long term treatment until I went on drainage remedies. I was already on actos and cholestyramine and many anti-inflammatory supplements.
Your body may need a lot of help detoxing.
MCS for me is caused by toxicity. I can tell when my liver is overtaxed because my MCS comes back.
I agree with others. A combo is usually what seems to be prescribed. Work on getting the inflammation down so you can take doxy. The dead bugs die in your tissues and cause inflammation so if you have a lot of inflammation on doxy, that's likely why. It probably means doxy would work for you!! You need to get the dead bugs out. Enzymes between meals will eat the debri. If you use enzymes use enteric coated proteolytic enzymes.
I know some people think that detox is hogwash and not needed. It may well be that they themselves don't need it but many of us do, if we are to stay on abx.
Many of our LLMD's agree as evidenced by the treatments that they use. It is NOT bogus as evidenced by the experience of MANY people. I'm happy for the people who don't think they need it but that doesn't mean that everyone is the same. Also, it could be that those who don't think they need it would find that they would be doing much better if they tried it.
I hope you can get some help to move forward in your treatment.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Yes thanks for the info Terry. Im taking welchol right now. The cholestyramine was just to loaded with aspartame and sugar. I couldnt handle it.
Ive always told me LLMD what is it, the toxins or the inflamation. There must be a reason that we are more sensitive to toxins.
There are plenty of people who drink and smoke that dont feel half as bad as us.
Posts: 2905 | From New England | Registered: Sep 2004
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