Need immediate advice - Might need antibiotics for lyme disease, which one is ok

[[Ne...]]

Hi,

 

Title says it all. A few months back, two ticks bit me. Nothing special. One was a little bit red around the bite mark, but maybe because I scratched it so much. Anyway, four days ago my hips started hurting. Now also my other joints feel weird, uncomfortable.

 

Hospital told me to get checked for lyme disease. I read that the treatment is antibiotics. I know that certain (maybe all? I don't know) antibiotics are not good if you're recovering from benzos.

 

So, in case I have to take an antibiotic - which ones are "safe"? And which ones are an absolute no-go?

 

It's quite urgent. I'd appreciate any and all advice.

[Guest [so...]]

Sorry this has happened to you, i don't know which ABs may be prescribed for Lyme but penicillins act on the gaba receptors like benzos so they get reinjured. However, although Keflex is a penicillin it has been shown to have the weakest effect on gaba receptors. Most ABs have a neurotoxic effect especially with those of us with a compromised cns but Clindamycin has been shown to have fewer adverse effects.

 

In so saying there are many people who take ABs in bwd  who have no problems with them just as there are many buddies who've experienced nasty setbacks (me for one), we are all different. You might get more info if you post on the Other Medications thread. Best wishes.

[[Le...]]

Sofa - WE are the experts in Benzo Withdrawals.  Doctors have not assimilated thousands of people's experiences into a forum where people can get the exact advice that NeverSurrender is looking for. I don't mean to be argumentative but without this type of information (DIRECT from BB) - I would have had setback upon setback. 

[[Pa...]]

NeverSurrender,

 

You are asking for prescriptive advice from forum members.  It’s against forum rules to give advice.  This is for you and your doctor to discuss.  Not appropriate for an online forum.

 

Sofa

 

Hi sofakingdone,

 

While it's against forum guidelines to give prescriptive advice, it is not to ask for it.  I admit, asking for advice might lead members to offer it, but we trust them to adhere to the guidelines and to only offer their personal experience and opinion to any subject they're discussing. 

 

Pamster

 

 

[[Pa...]]

Hi,

 

Title says it all. A few months back, two ticks bit me. Nothing special. One was a little bit red around the bite mark, but maybe because I scratched it so much. Anyway, four days ago my hips started hurting. Now also my other joints feel weird, uncomfortable.

 

Hospital told me to get checked for lyme disease. I read that the treatment is antibiotics. I know that certain (maybe all? I don't know) antibiotics are not good if you're recovering from benzos.

 

So, in case I have to take an antibiotic - which ones are "safe"? And which ones are an absolute no-go?

 

It's quite urgent. I'd appreciate any and all advice.

 

Hello NeverSurrender,

 

I'm sorry to hear about the tick bites, I used to get those as a kid, scary stuff!  I hope you don't get lyme disease, but if it turns out you do, check out this thread, it will help you and your Dr make the best decision for your care.  http://www.benzobuddies.org/forum/index.php?topic=36633.0

 

Pamster

[[or...]]

Okay, I get what the guidelines say, and members' concerns about not following them.

 

HOWEVER if someone had alerted me to the fact that Cipro was a no-no when it was prescribed for me in the middle of my taper (for a UTI for crap's sake) I could have saved myself from a world of hurt. I had a terrible reaction to it. UTIs can be treated without the sledgehammer of Cipro (or any of the fluoroquinolones).

 

It's pretty much conventional wisdom now for us to avoid the whole class of drugs of which that Cipro is a member.

 

If the OP were me, I would ask my doc about any proposed AB and do my own research. I didn't do that during my taper -- actually I was too brain dead to do any research -- but sure would have appreciated advice.

 

This is a pickle, isn't it?

 

 

Katz

[[Ma...]]

NeverSurrender, go to home page, under your avatar, and see search, type in antibiotics and you will get lots of information, you can also type in Lyme .........hopefully you will find what you need there .

Good luck Mary 🍀🍀🍀🍀

[[Ne...]]

Thanks guys, appreciate it.

[Guest [so...]]

I'm sorry but most Dr's don't know about the neurotoxicity of ABs on a compromised cns in bwd, they certainly don't have the time to undertake the meticulous research. My own Dr was horrified at the effect a penicillin had on me, lots of us on here do have the time to research many topics and to pass that information on to other buddies, what people do with that information is up to them but if we can't pass on what we find out about other meds what is the point of having a board dedicated to them? I'm confused here. I almost died from an encounter with a penicillin and found the research that explained why. If i see a buddie asking for information on ABs then i believe it is morally wrong not to pass that information on. Discuss it with your Dr seems to be the new mantra on here, but we have many buddies giving sound advice on tapering which Dr's know little about, a case in point being the issue of CT. All the titration boards are offering "prescriptive advice" and thank god they are.

[[Da...]]

You should ask your doctor to consult a neurology research database (or an actual neurologist) and ask them to find the antibiotic that is the least neurotoxic (ie has the fewest number of nervous system-related adverse events per prescription or just no known neurotoxicity). Doctors have access to plenty of resources, so they should be able to do something like that if you ask.

[Guest [so...]]

That presupposes that the Dr believes you are in bwd.

[[or...]]

You should ask your doctor to consult a neurology research database (or an actual neurologist) and ask them to find the antibiotic that is the least neurotoxic (ie has the fewest number of nervous system-related adverse events per prescription or just no known neurotoxicity).

 

Not meaning to argue, but this assumes a lot, DG. One that your doc is even interested in helping you out in this way; two that she/he can access such a database or will consult a specialist; and three that they have more than 15 or 30 minutes to devote to you. Truly, my doc sees people in 15 or 30 minute intervals. Anything I want to know more about, I have to research on my own, which is pretty crappy medicine, imo. But that's the way it is in my giant medical system.

 

And southern, I'm confused, too. There seems to be a "sea change" here at BB. Something's happening, and I'm not sure that something is a change for the better. Discuss it with your doctor? It has indeed become a mantra. Hmm. If we can't pass on what we learn about medications, what is the point of this BB? I get it that we can't and shouldn't willy-nilly advocate that people take drug A or drug B, but are we no longer "allowed" to post our own "research" findings?

 

Maybe it's time for me to move on.

 

 

Katz

[[so...]]

To everyone on this thread,

 

I pulled down my post regarding advice.  I’ve actually had a change of heart.

 

Although I plan to follow the forum rules, we are all adults here and each of us chooses the advice we want to follow.  Nobody puts a gun to our heads and we all have the ability to use discretion.  I will always “advise” people to consult with their doctors, but that’s MY advice and need not be followed.

 

Sofa

[[pi...]]

You should ask your doctor to consult a neurology research database (or an actual neurologist) and ask them to find the antibiotic that is the least neurotoxic (ie has the fewest number of nervous system-related adverse events per prescription or just no known neurotoxicity).

 

Not meaning to argue, but this assumes a lot, DG. One that your doc is even interested in helping you out in this way; two that she/he can access such a database or will consult a specialist; and three that they have more than 15 or 30 minutes to devote to you. Truly, my doc sees people in 15 or 30 minute intervals. Anything I want to know more about, I have to research on my own, which is pretty crappy medicine, imo. But that's the way it is in my giant medical system.

 

And southern, I'm confused, too. There seems to be a "sea change" here at BB. Something's happening, and I'm not sure that something is a change for the better. Discuss it with your doctor? It has indeed become a mantra. Hmm. If we can't pass on what we learn about medications, what is the point of this BB? I get it that we can't and shouldn't willy-nilly advocate that people take drug A or drug B, but are we no longer "allowed" to post our own "research" findings?

 

Maybe it's time for me to move on.

 

 

Katz

 

Katz,

 

Of course it is appropriate to post your experience. We welcome members to post their experience and well as share any research they might have found.  Knowing that others have experienced the same issues, problems, does a lot to allay many of the fears we all have during withdrawal.

 

No one on the team has said this is not allowed and we have not discouraged it either. Sometimes there are theories that are presented with no scientific backing, if this is the case we may ask for verification of the research and it's results. Additionally, we have to remember that no one is an expert here so when information is disseminated by a member, it's our responsibility to make certain that information is correct and reliable.

 

Yes, we do often suggest that people consult their doctor, this is common sense, especially with something like Lymes.  True, the tests can be inaccurate at times. However, Lymes is a tricky and sometimes debilitating disease so it's important to see a doctor for this. 

 

Pamster gave the OP the link to the valuable thread about fluoroquinolones. These medications can be problematic for people in general, not just those on benzos or in withdrawal.

 

I don't believe there is a change of disposition here on the forum. You'll read a lot of different viewpoints because we have a very diverse population here.

 

pianogirl

 

[Guest [so...]]

Katz i totally agree with your above post.

 

Discussing it with my Dr got me into this mess especially regarding coming off the poison. I believe we all have to be our best advocates, diligently do our own research, ask questions of others, and not blindly adhere to what the Dr tells us. WE know our bodies best, i will never discuss anything with my Dr again unless i am armed with multiple sources of evidence, it is very clear to me after being 2 years in this hell that i know more than any Dr. Maybe the word "advice" should be changed.Anyway I'm done now, this snappy snarly croc is off to get advice from the cardiologist, I'll bet my life I'll get the eye roll when i say I'm in bwd at 21 months off. Grrrr

[[be...]]

The thing about Lyme is few labs give the right conclusions. For example my brother had Lyme as there were ticks all up and down his arms after a hunting trip in Maine. He went to five labs and they all said negative.

 

He asked my doctor dad why. Dad said most don’t know what they are doing. There are special Lyme only labs that are useful impo. David went to one and got a positive reading. He was on antibiotics for a freakin year.

[[SS...]]

having had lymes and treated it - going to weigh in here - first - not all ticks carry lymes - in fact most dont - so simply having a tick bite does not mean you will have lymes.  whenever possible - its best to try to keep the tick itself and have the tick tested.  there are several labs that have very solid assays for lymes diagnosis.  my lymes diagnosis was confirmed by 3 different labs.

 

when it comes to antibiotics-  not all antibiotics kill lymes so its not like you can go in and say you want "x" if "x" isn't known to impact lymes then why take it .  doxycycline remains the drug of choice for treating lymes.  its not effective for everyone and it wasnt for me.  plus i couldnt tolerate it - caused severe diarrhea.  i took both minocycline and ceftin  and also needed a PICC line with IV antibiotics.....

 

so- again - a tick bite doesnt = lymes and not all antibiotics are effective for treating it....

 

sadly - a lot of doctors just give a lymes diagnosis when they can't figure out what is wrong with someone....... given the large number of people in the world on SSRIs and benzos-  i often wonder if this lymes issue isn't a phenomena related to the use of these meds.  if you have a positive test - then its a bit more clear but if you don't have a positive test - i'd be cautious about jumping to that conclusion

[[Da...]]

 

Not meaning to argue, but this assumes a lot, DG. One that your doc is even interested in helping you out in this way; two that she/he can access such a database or will consult a specialist; and three that they have more than 15 or 30 minutes to devote to you. Truly, my doc sees people in 15 or 30 minute intervals. Anything I want to know more about, I have to research on my own, which is pretty crappy medicine, imo. But that's the way it is in my giant medical system.

 

 

Right, but if your doctor is just going to blow off your concerns about about the neurotoxicity of ABs when that is a known problem with them, then why are you even going to that doctor? There is really no harm in asking and then researching their answer yourself. That is a great way of finding out whether you have a decent doctor or just some charlatan.