This is topic Help! BAD first day on Biaxin in forum Medical Questions at LymeNet Flash.


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Posted by swachsler (Member # 18155) on :
 
Bitten June 07. I have positive tests for Lyme and babs, but LLMD and I have come to conclusion I probably also have bart because I have almost all the symptoms, though we've never tx for it yet besides one disastrous week of Rifampin 2 yrs ago.

Right now I'm on bicillin (every other day) which has finally led to big improvement the last two months after ~2 years bedridden, and artemesinin (pulsing 3 days on, 4 days off).

I was on Mepron and Zithro from Nov. through March, but went off zith due to tinnitus/hyperacusis, and then went off Mepron due to elevated ALTs.

However, my ALTs are still bouncing, so we suspect artem and have lowered dose, but LLMD said it would be OK to try Biaxin, and if all goes well, get an eye test and start Plaquinil.

I took my first 500 mg tab around 1 pm today. By 7pm I was in a world of pain, mostly joints, some more swollen than before, also mild but continuous nausea and headache, worse exhaustion and cognition than (already bad) usual. Pain meds did almost nothing.

I couldn't get out of bed or move my legs without help. I've emailed my LLMD, but I don't know if she'll get back to me on Monday or not. Goes on vacation following week through half of July.

I haven't had an instantly bad reaction like this since Rifampin, Nov. 07, which I was on for one week. It was horrific, and caused a crash I've only started recovering from in the last 2 months.

By midnight either the pain meds kicked in OR the Biaxin was wearing off OR for whatever reason, I started to feel better, so I decided to take just half a tab for my second dose.

Then I became super nauseous (almost barfed but didn't) and got a big ol' migraine.

Has anyone else had such a fast, bad reaction to biaxin?

Did you stay on it?

Does this sound like a herx?

Is there any connection between Biaxin and Rifampin?

Has anyone tried starting at a low dose (maybe 1/4 tab twice a day) and working up? Is this the kind of pill you're not supposed to break up?

I want to kill the bugs, but I don't want to go back to complete 24/7 bedridden, unable to move, stand, talk, etc., again.

Thanks for any help.
-Sharon
 
Posted by Geneal (Member # 10375) on :
 
Biaxin is recommended by Dr. S to treat bartonella.

Often used for babesia treatment as well.

Sometimes it is best to start with a baby dosage

And work your way up.

My LLMD never advocates pushing through a really bad herx.

Call your LLMD on Monday.

Maybe lay off the biaxin until you speak with your doctor.

Hugs,

Geneal
 
Posted by radfaraf (Member # 11909) on :
 
To me that sounds really odd as I think beside different side effects your reaction to Zith and Biaxin should be very similar they are such similar drugs. I'm assuming you handled Zith well except for the tinnitus/hyperacusis since nothing else was mentioned...

For me having both Bart and Lyme, they just make me feel better and I notice different side effects. Biaxin makes me have insomnia and GI disfunction that tends to randomly give minor diarrhea. Zith the only side effect I notice is GI disfunction that tends to constipate and a bit of GI pain if not taken with food.
 
Posted by swachsler (Member # 18155) on :
 
Thanks, these responses are helpful.

Confirms my hunch to back way down on dose.

Woke with chills. Right now have on turtleneck, hoodie, wool socks, under quilt. . . .

Also, chest pain for about an hour. I haven't yet set up my 30-day heart monitor because it's so smelly. (MCS) Have been airing it out. Now wish I had it on. Directions overwhelming.

Also, eyes hurt, itchy - new sx for me.

Voice GONE again.

Major sensory sensitivity (light, sound, touch, etc.), like I had with Rifampin right away, too.

I think this is a bart and babs herx, does that sound right?

Geneal, who is Dr. S? Can you PM me that?

Any time I have ever gone on anything effective -- amoxi, mepron, artem, zith, bicillin (big time), flagyl -- i have herxed BAD, usually for at least a month, then it calms down, then it starts to make me feel better.

However, my dog has cancer, and I need to take care of him. I can't afford to be incapacitated right now.

But I want to keep getting better -- fighting the bugs. I REALLY want to get at bart, as my psych sx have been horrible for 2+ yrs.

Anything else I can do to reduce herx besides lower dose?

I will call LLMD tmw, but she is very hard to reach.

Yes, as far as I know, only negative effect w/zith was tinnitus/hyperacusis, but that was pretty bad after a few months.

Thanks for more feedback, ideas, experience, etc.

Hate this rollercoaster.

-sharon
 
Posted by btmb03 (Member # 18394) on :
 
Sharon, so sorry you're suffering but I CAN relate. I think the huge die-off sets off a cascade of pro-inflammatory cytokines and other immune chemicals that make us feel very sick - actually I've felt like I was dying..

Hang in there, it does get better!! [Smile]
 
Posted by swachsler (Member # 18155) on :
 
btmb,

yes, when on rifampin it felt like every time i took a pill i was murdering myself.

i'm now wondering if my reaction to rifampin was because i started at the full dose - 50 mg 2x day.

Gives me hope maybe some day could try again at very low dose and work up.

this board is a godsend. i have been away from all the lyme communities for the past month to take care of my dog who has lymphoma. such a blessing to be able to "show up" and get help so fast.

big relief to my partner, too. i know she was worried we were about to have another rifampin nightmare.

so grateful we both remember sign language as we are back to communicating nonverbally. uck.

-sharon

[ 06-14-2009, 06:41 PM: Message edited by: swachsler ]
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
Biaxin had a brief, positive effect on my bartonella cardiac symptoms before I knew I had bartonella. I was only given a couple of weeks of it. I did not continue it due to Long QT issues and the fact that it has Long QT risks. When I later had a similar response to other bart meds, I realized it must have been hitting the bart.

I think with CFIDS and bart treatment it's tricky, as bart can become resistant if you don't treat hard enough, but as I understand it treatment kills red blood cells, and CFIDS already gives us low blood volume, so killing more cells could theoretically cause a whole host of other issues. Also, dead red blood cells cause the production of endogenous carbon monoxide, which Albert Donnay believes to be a problem in MCS people. Also, the cytokines someone mentioned, etc. (not sure I'm stating this exactly right as my brain is pretty fogged, so you might want to fact check).

I actually think bart treatment, though effective, is part of what has weakened me to the point I'm at now. I'm not sure what to do about this. I restarted Rifampin a couple of weeks ago and it has gotten me out of my bedroom a little bit, for which I am grateful, but I also feel very weak in new and different ways, yet I'm reluctant to cut back on treatment since my case of bart is pretty severe.

It seems to me that since Biaxin is pretty different from Rifampin in action you are indeed having a herx.

Chills, eye symptoms, and chest pain are all bart symptoms for me and worsen during a herx.
 
Posted by swachsler (Member # 18155) on :
 
Hey friend, nice to "see" you. :-)

Since I got CFIDS and MCS partly as a result of carbon monoxide poisoning, that is worrisome.

Also, last blood draw my blood was dark chocolate brown again, suggesting the infection count is up, even though I've been feeling better. So, I don't want more thick, sludgy blood!

Yet, I bruise every week when I do my allergy shots, no matter how careful I am, and I'd assumed that was from the nattokinase I'm on for hypercoag.

AUG. CFIDS, MCS, and Lyme and co are NOT a good combo!

It's good to know these sx are typical of bart. i had assume the chills were babs. i thought i was on biaxin for babs....

when u say, if you don't hit it hard enough, do u think starting at a low dose and ramping up will therefore be a prob? make it more resistant? i don't know if i can handle going through a "death-herx" right now.

As it is, it's pretty upsetting that i can't lift my own covers, get out of bed, speak, etc., again. Gadget has an important chemo appt tmw AM, and now I don't think I'll be able to go. :0(

-sharon
 
Posted by swachsler (Member # 18155) on :
 
p.s. mcscfidslyme,

do u think i shd up my usage of oxygen while on biaxin? wd this help w/the endogenous CO??

do u think my LLMD might have any insights re: points you raise above in terms of tx, seeing as how she's familiar with all of these DD?

-s
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
Hey I hear you about the non-speaking. I haven't been able to talk in months now!

With Rifampin they say to get to full dose fairly quickly -- not the first day necessarily, but as quickly as you can handle it. I don't know about Biaxin. It is my understanding that bart can become resistant within a few days, so personally I don't wait too long to ramp up. I too am in a mega herx right now from restarting the Rifampin.

I also read an article on treating bartonella (conventional medical article) that stated severe cases should be treated with two meds to prevent resistance. They were mentioning Rifampin and Doxycycline for example. Apparently some use Ceftriaxone and Rifampin for BART which is actually what I'm on now. This was not an article by an LLMD however.

Angelica helps build blood and I have found it helps somewhat with the blood stuff. In terms of oxygenating your blood, however, doing nasal oxygen won't nec. help. I know Donnay believes high flow oxygen can help with CO poisoning, but most things I have read said that only hyperbaric can really effectively uncouple CO from hemoglobin to increase oxygen transport.

The dark blood does seem to indicate your blood isn't oxygenated. You could try Donnay's method of doing 2 hrs of high flow/daily to see if that helps at all. It might. Vitamin C at high doses sometimes helps with the dark blood too.

I also find Floravidal Iron plus herbs to be helpful with preventing anemia and it sometimes gives me more energy. Unless you have too much iron it's pretty safe to take regularly.
 
Posted by Lymetoo (Member # 743) on :
 
Biaxin works well!! So go easy! I hope you can get hold of your LLMD!!
 
Posted by swachsler (Member # 18155) on :
 
Yes, I went such a long time w/out speaking, it's been so nice lately to be able to talk again.

LymeCFIDSMCS said:
I also read an article on treating bartonella (conventional medical article) that stated severe cases should be treated with two meds to prevent resistance. They were mentioning Rifampin and Doxycycline for example. Apparently some use Ceftriaxone and Rifampin for BART which is actually what I'm on now. This was not an article by an LLMD however.

I was on cefuroxime -- which I don't think was helping me, but that was before I really knew much of anything -- two years ago when I went on Rifampin and got knocked flat. Is cefuroxime and Ceftriaxone the same thing? I didn't react badly to cefuroxime; I don't even remember a herx at all, so I wouldn't mind going on that again.

I was supposed to start plaquinil soon to go with the biaxin because the biaxin was supposed to be for babs, but it seems like the biaxin is hitting the bart, too. So now I'm wondering if i shd get Rx for ceftriaxone before LLMD leaves for 3-wk vacation?

Plaq treats babs and the cyst form of Lyme, right? It doesn't affect bart?

Vit. C and I are old friends, so that's no prob.

What is angelica?

I don't think my regulator lets me go high enough for Donnay's protocol, but I have already sometimes been doing 2 hrs at 4LPM, where this regulator maxes out.

You are a font of info, as always!
-Sharon
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
Sharon,
I actually would love to know if cefuroxime has some efficacy against bart -- it IS in the same class of drugs as Ceftriaxone but I don't know if it works against bart.

Our LLMD indicated to me that Ceftriaxone might work against bart but Rocephin didn't -- even though they are basically the same drug. So if anyone can clarify this point about whether cefuroxime works on bart, I'd really like to know.

I just read this good big on LymeMD's blog (http://lymemd.blogspot.com/2009/06/life-after-rocephin.html) about maintaining benefits of IV Rocephin with orals, but I don't know if going from IM Ceftriaxone to orals would change things since I believe it's treating both Lyme and bart for me.

Angelica is an herb used a lot in TCM.
 
Posted by HaplyCarlessdave (Member # 413) on :
 
quote:
Originally posted by LymeCFIDSMCS:
Sharon,
I actually would love to know if cefuroxime has some efficacy against bart -- it IS in the same class of drugs as Ceftriaxone but I don't know if it works against bart.

Our LLMD indicated to me that Ceftriaxone might work against bart but Rocephin didn't -- even though they are basically the same drug. So if anyone can clarify this point about whether cefuroxime works on bart, I'd really like to know.

I just read this good big on LymeMD's blog (http://lymemd.blogspot.com/2009/06/life-after-rocephin.html) about maintaining benefits of IV Rocephin with orals, but I don't know if going from IM Ceftriaxone to orals would change things since I believe it's treating both Lyme and bart for me.

Angelica is an herb used a lot in TCM.

On the blog you mention, there IS mention of alternatives to 'rocephin'; I don't know if this means the kind of combination-therapy I had, but I had very good luck with that. For me, 'biaxin' and amosicillin (1g and 6g a day, respectively) were very effective.) I did have cefuroxime axefil, in combination with doxycycline, before that, too.

Note: It's my understanding that 'rocephin' is a ..'brand name'.. of ceftriaxone. I really think that in medicine, this kind of confusion should prevented! (cefuroxime axefil has 'brand name' ...ceftin'.., too)

Another interesting post on the blog ref'd above wondered whether gall bladder problems associated with ceftriaxone might actually be a result of lyme itself. I must say, though, I didn't seem to have gall bladder issues...(I was, however taking
<a href="http://herbal-properties.suite101.com/article.cfm/milk_thistle">mil thistle</a>, which is supposed to help
DaveS
 


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