Topic: All those Starting or on Biaxin Antibiotic - Support Thread Here!
lymestop
Unregistered
posted
I have read quite a few posts in the past two months from people starting Biaxin and or people on Biaxin and the troubles they have getting started or moving along on this medication.
Others who have had time under their belt have tried to help and some of us who are on about the same timeframe trying to support one another.
I thought we could have ONE thread and all come here to support one another and get information in one place would be helpful.
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btmb03
Unregistered
posted
great idea..will post shortly...
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posted
Thank you so much for this thread!!! Your story matches mine.
I was off 3 days for a break and am so scared to take a dose. My dad saw his Dr. in Cali today and told him the med's I am on. The Dr. said," What is she taking that for! That's like chemotherapy." so that made me realize that I'm not just being a whimp it really is that bad!
Can you tell me the mg of the singular that you took?
How often do you take it?
Are you still taking it?
Wondering if you see Dr. D? If so guess I could call for the singular script.
So you just do 3 days a week if I read that correctly?
So maybe I can just take the Med's Fri, Sat Sunday for awhile so I can work during the week?
I certainly can't work in the condition I was in before taking the 3 day break!
Sorry for all the questions. Just trying to figure this whole mess out, get adequate treatment and still be able to work.
posted
Biaxin got me well. I took it for a year and a half straight. Took 4 yrs for me to get completely well. Worth the trip!!
Hang in there, guys and gals!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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btmb03
Unregistered
posted
thx for that encouragement lymetoo.
a side-note to newbies or new to biaxin - never, never self-medicate, pls check with your doctor before taking even OTC stuff - google "anaphylaxis", not pretty
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
My side effect with Biaxin is extreme depression - I've posted about that before here, search under my name for prior posts. I don't have that problem with Azithromycin or Mepron alone.
Yesterday I re-started the Biaxin- boom, immediate vivid dreams happened, another side effect. I seem to recall that they go away for me.
-------------------- Symptom Free!!! Thank you all!!!!
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
also, there seems to be a difference in the 'awful after taste' side effect, depending on whether I"m taking generic clarithromycin or brand name Biaxin XL. The XL doesn't cause that for me.
-------------------- Symptom Free!!! Thank you all!!!!
posted
I HATE THE TASTE!!!!! That for me is one of the worst parts!
I personally have had a rought ime on this combo, trouble breathing, rash, anorexia, severe nausea, stomach pain, shall I continue???
BUT I will say that as the days pass I am feeling less of the herx's. Still feel Lymie.
I definitely think the combo works. It must if its causing such herx's.... I take 1000 mg biaxin, and 400mg plaquenil a day. Breakfast 500 biaxin and 200 plaquenil, supper same.
I still have to pulse every once in a while, but for the most part I am on full dose now. The last time I had to stop for a bit was rash week... But doing better now "knock on wood"
I went through many days where I wanted to quit but now I am glad I did not. Best of luck to all and if theres any way I can help please let me know!
posted
Not sure if it will last, but since dropping my dose down I have been so much better. I am going to see how I do for a couple more days then add a 2nd dose.
I also noticed from posts here that I seem to have been taking an extra 500mg compared to others. I was wondering why that was. I will have to ask my Dr. Esp. since I know at least one on here see's the same Dr. as me.
Ann
-------------------- If you keep doing nothing...nothing changes!
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
is it ok to take generics of both of these, or must they be brand? Anyone else on here doing IV Rocephin or Bicillin with it? I am supposed to do 500mg Biaxin with 200mg Plaq, and then work up. Is anyone else concerned with resistance with this protocol?
Posts: 3528 | From US | Registered: Apr 2007
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
myco- Though it may treat some co-s, it's general use is to treat Lyme directly. This combo is esp useful for the joints, so is often used when arthritic symptoms are significant.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I definitely did notice a much stronger tongue-yellowing & metallic taste when on the name-brand original Biaxin many years ago. My latest experience was with generic Biaxin XL. Much less "tongue" issues. {Either that or the stuff was defective/weak:(~ }
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
Hi I started Biaxin 3/8 for Lyme. I take 500 mg twice a day, the pills are yellow and oval, smell like vanilla.
I never got a metallic taste. One day after starting my typical symptoms got worse. The next day I hurt all over, achy. Felt like nerve pain. I wanted to rub it away but nothing helped.
By 3/13 the periods of pain got shorter. By 3/14 no more body pain and symptoms overall improved.
I was supposed to increase biaxin to 1000 mg twice a day 5 days after starting on it. Then add 2000 mg twice a day of Augmentin
Thankfully I am not to do that now since I had this reaction. When I feel better I am to increase the Biaxin as planned. I do feel better but I am giving myself some more time before I increase.
The herx convinced me, if there had been any doubt, that I do indeed have Lyme. I know my healing will take more time than I had thought so no need to rush it.
I need to prepare for the herx I will get upon increasing. My hope is that it will not be worse then what I have experienced. Then I can do the protcol and hopefully get better.
Posts: 32 | From Pennsylvania | Registered: Mar 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Anyone having to pay for this? If so email me at [email protected].
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Ok so I read through some of these posts and this abx sounds like it is a strong one!
I am about to start both my boys on this. The LLMD gave them each 1000 mg a day. They are 10 and 13 and weigh about 130 each. Both are sensitive to meds also.
So he didn't say to work our way up to 1000 per day. Any advice on where to start with this?
Also what symptoms or herxes do you find to be the worst with this abx compared to others? They are still in school so I am wondering if we will need to put them on a medical leave?
Thanks! Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I did 1000mg of biaxin a day and I only weighed 105lbs.
Maybe start at 500mg for a few days and ramp up slowly.
See if they herx and how bad.
Both the boys weigh more than I did and I did fine for a long time on it.
I am just trying to go back to biaxin.
After one year straight I started with PVC's and had to stop for a while.
I am back on 500mg and am suprised at how good I feel on it.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I've heard it causes psycho symptoms-I'm really afraid of that as I'm already freaking out about this whole thing. Have you had any of these symptoms?
posted
I've heard it causes psycho symptoms-I'm really afraid of that as I'm already freaking out about this whole thing. Have you had any of these symptoms?
posted
Hi everyone, I thought I'd bump this up to see how y'all are doing. I just started Biaxin yesterday. I took 500 mg, was Ok except for some wild dreams, so will do 1000 today. He didn't prescribe Plaquenil - do you think it will work as well without it?? I also take 3000 mg Amoxy, 500 mg Levaquin and Nystatin. I had to go off Ceftin because it gave me some nasty arrythmias.
Hope everyone is as well as possible :-)
Posts: 22 | From Oregon | Registered: Feb 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
just remember to take plenty of probiotics.
biaxin and flagy gave me yeast from hell that took weeks to get over...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i'm finishing it tomorrow and didn't have any trouble
i also took nystatin and diflucan and probiotics (away from the other stuff
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kreynolds
Frequent Contributor (1K+ posts)
Member # 15117
posted
I am scared to start my Biaxin because of anxiety/panic attacks.
I am on IV Doxy,Tindamax,Zithromax,Malarone and Artemesia....
I have the Biaxin, just waiting for the "right time" to take it.
I have heard from many that it increases anxiety and that is something that I do not want.
I have severe panic attacks and essentially Agoraphobia.
Kind of stuck because I know it will help, but just scared of the side effects.
Thanks for the post!
-------------------- Diagnosed CDC + 6/2007
Quest: + IGG Bands 18,23,39,41,58,66 and 93.
Quest: + IGM Bands 23,39
Quest: + Bartonella (B.Henselea & B. Quintana),+ Babesia, and + Mycoplasma and Lyme-Induced Addisons Disease
+ Biofilm blood test 12/2010 Posts: 1185 | From New York | Registered: Apr 2008
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posted
Our daughter just started on Biaxin / Plaquinil tonight. She's enthusiastic because it is supposed to help with her terrible joint pains.
Hers smells good, just like vanilla. I'm just starting to research it, apparently there is a type that leaves a bad metallic taste, but she has the good one.
Her LLMD said IF she has a flare from it, it should last about a week and then she'll start to feel much better.
She has nowhere to go but up, therefore willing to try anything!
Burrascano says Biaxin alone is not so effective, but when paired with Plaquinil or another in that anti-malarial family, it works well.
Posts: 228 | From Mass. | Registered: Feb 2009
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
My daughter has started out on 500mg of liquid Biaxin, 500mg going to 1000mg. She has been on the 500mg for a week.
we had to stop the minocycline due to ear tones/ringing, she is still getting the ear ringing, but not as bad.
Anyone know if this goes away on Biaxin.?
She is also on Rifampin and Zoloft.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
My report on Biaxin side effects:
I'm on the brand name. The aftertaste sucks but gets a little better for me after a few weeks.
I sometimes get some weird depression on it- I don't normally get depressed at all- and I've finally figured out that if I take a few days off from the drug, the depression goes away and I can re-start it with no problem.
I have/had babesia and was taking the drug with Mepron, and I'm pretty sure all of this was some kind of babesia 'herx' or babesia symptom or something like that this time around. Now that my babesia symptoms seem to be under control I do'nt seem to have these problems.
-------------------- Symptom Free!!! Thank you all!!!!
posted
MariaA - Did your doc mention it was Ok to take a couple of days off Biaxin? Just wondered. I'd love to do that. I have a phone consult with my LLMD soon and will ask him. Just wasn't aware that was an option.
I also didn't realize you could do monotherapy with it - I might have misread your post - perhaps you're on other meds? The Plaquenil (small dose) I'm on is kicking my butt too and I'd love to be off of it for a couple of days! Good luck with your tx!
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
No, I didn't actually ask him whether it was OK, I just had to do it.
I was taking Mepron with it for most of the time I was on it- I think there's some evidence that it's not a good idea to take breaks from either medication when treating babesia because of concerns that babesia could become resistant, but no one's really studied this issue very closely (there's a study that showed, in hamsters only, that babesia can develop resistance to Mepron alone and macrolide antibiotics help prevent that, but that doens't really tell us anythjing about what a few days' break from Biaxin would do in a human in the same situation).
Biaxin- I don't think it's super effective as monotherapy, at least according to various posts here where patients report that their doctors say this.
Biaxin can also cause fatigue. The fatigue I attributed to Biaxin went away eventually.
-------------------- Symptom Free!!! Thank you all!!!!
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I think no Abx is effective as mono-therapy if chronic Bb exists.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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btmb03
Unregistered
posted
Thx for your input MariaA and seekhelp - I seem to do OK on one med but as soon as another is added all h!^* breaks loose.
Will ask my LLMD about the above, also whether my teenie dose of Plaquenil is beneficial at all.
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posted
Biaxin rocks! This stuff works and I think my body craves it, like it knows it's working or something, 500mg x2 a day here.
Zero side effects. OR, the lyme nightmare has put me through so much I haven't noticed any extra mental issues and/or insomnia.
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Thanks for the replies.
We now think that the zoloft is the culprit for the ear issues.
I feel a litle better knowing that it might not be the antibiotics, Hate to have to change them again for her.
Pharmacist said it is most likely the Zoloft. So we will see.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Just found out. DO NOT TAKE BIAXIN AND ZOLOFT together.
Biaxin interacts with the Zoloft, so basically the Zoloft stays in your system and can build to toxic levels. Basically the Biaxin interferes with the clearance of Zoloft.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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