Cipro for Lyme?

[louris]

My MD mentioned at my last appointment that he suspected I might be infected with lyme.  His assessment was based on my comment about a profound improvement while taking minocin and fluconazole concurrently and my rapid regression once the fluconazole script was done.  I quit the minocin about two weeks after the fluconazole was done as symptoms from what appears to be a fungal overgrowth also returned along with my intense cranial neuritis/facial neuralgia symptoms.

I've suspected lyme for the past few years but didn't necessarily have the evidence to support me.  Well, without ever mentioning suspicions of lyme to this doctor who is treating me since mid-January for this apparent fungal overgrowth, he mentioned it to me.  I finally got the evidence I believe I need close to a month ago, and then BAM!, he throws this out to me two weeks ago from this coming Wednesday.

He wrote me a script for Cipro @ 500mg twice a day and really I think he is interested to see if I have a similar improvement to what I experienced in the fall on the Mino/Diflucan combo.  We didn't discuss lyme any further at the last appointment.  I have not yet filled the script.  A bunch of questions popped into my mind on the ride home and that evening which left me with some hesitation.

Has anyone here used Cipro against lyme?  I don't know if that is what is ailing me or not, but I strongly suspect it.  I am planning on heading up north hopefully some time this summer to consult with an LLMD, but am still working out who to see (quality of MD) and how soon I can get in for an appointment.  I do plan to throw some questions out to my MD on Wednesday when I see him again regarding if he would plan to continue to treat for lyme until I see an LLMD, what the treatment would be, and how long he would agree to treat me.  I suspect, should I be infected with lyme, that it has existed for at least four years and maybe as long as 15 years. 

I have concerns about the Cipro due to this FDA black box warning, although I once took levaquin for either 10 or 14 days without issue.  I also, based on a cursory search, can't find much regarding the effectiveness of cipro against lyme.  I found some references to effectiveness against bartonella, but nothing on lyme.  Therefore I was hoping someone here might be able to offer more insight into any effectiveness of Cipro against lyme. 

Thank you,
Jay 

[Trudi]

Although never diagnosed with lyme, I had symptoms (neurological, cognitive, visual disturbances, panic attacks, etc.) of the disease in the early '90's.  My doctor put me on Cipro for some bacteria in my gut.  ALL my symptoms regressed–not a 100%, but I considered myself cured from whatever was ailing me. 

Looking back and recognizing what lyme is capable of, I'm pretty sure the Cipro put me into remission in the early 90's.  I've been tempted to ask my current doctor about doing Cipro again, but am leary of the new black box warning.  I had no problems, however, when I took it initially.

Good luck,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[shaz]

Hi Lauris,

I don't have rheumatory arthritis but have been diagnosed with lymes.  I live in Toronto Canada and am being treated by a LLMD in NY city – Dr. B.R. (would recommend as a potential for you).  I'm on several meds and one of them is Cipro 500 mg x 2/day.  I've been taking this with the other meds/supplements since end of January with no incidence so far!  While I have seen improvements since beginning this regimin, one of the worst symptoms persist.  I was very interested in your statement in your posting on April 2 “…..fungal overgrowth also returned along with my intense cranial neuritis/facial neuralgia symptoms.”

Where exactly is this pain and can you describe more specifically what your symptoms are?  For me, I have moderate to severe pain daily in the occiput area of my head – usually increasing as the day wears on.  I also have neck/shoulder fibro pain and have been battling fungal overgrowth for about 10 years now.

I'm happy to provide any info that you might find helpful as to this physician or the protocol.  I look forward to hearing back from you.

Shaz 

Edited by RBFV to remove Physician's full name. Support Forum policy is to use Physician initials only. Thank you for your understanding. Please feel free to share physician info in private messages.

[m.]

JMO, but I wouldn't risk Cipro.

[Maz]

[user=1009]shaz[/user] wrote:

I live in Toronto Canada and am being treated by a LLMD in NY city

 

Hi Shaz! Lovely to hear from you, though sorry to hear you're still struggling with this pain. Have you noticed any improvements in other ways since starting Lyme protocols? This can take a long time, but hope it won't be long till you turn the corner.

Peace, Maz

[louris]

Hello Shaz. 

These symptoms are sometimes typical trigeminal neuralgia brief shocks/stabs or spasms of durations lasting 10 to 15 seconds (however, it feels like it lasts a lifetime when it's happening).  Other times it can be a dull, continuous, throbbing pain or ache that has lasted up to two hours.  It seems to vary in intensity and pattern.  It also seems to vary in regards to what triggers an episode of pain.  There have been times where I can't seem to get it to stop and just have to deal with it.  The pain is typically in my mandibular branch (think bottom jaw) of the trigeminal nerve and occassionally the maxillary branch (think upper lip below the nose) of the trigeminal nerve.  The throbbing/pulsing headaches usually occur near the front of my ear or in my temple.  As stated, it varies. 

Lately, there has been continuous discomfort and a feeling of numbess and swelling (as if I've had multiple shots of novocaine) in my lips.  I get pain throughout my jaw and teeth.  The side of my head is numb.  Touching my forehead is slightly painful (think nerve sensitivity pain).  I also get burning sensations throughout the side of my face.   All of this occurs on the right side of my face.  I don't talk anymore, otherwise I'll set off an acute attack.  Eating is difficult as chewing is minimal at best and most food is swallowed (after being chopped or pureed). 

I finally relented and started on Tegretol as it became apparent that I was not experiencing any sort of remission at any point in the last year.  Previously, I had periods of remission (around four months) after having flares lasting up to eight months.  This current episode has been going on for over a year. The Tegretol has provided some support, but not much.  I can tell it is only covering things up.

What made me first target lyme was a doc calling it crainial neuritis.  I had found many instances of bell's palsy as the crainial nerve invovement with lyme, but little, if anything regarding trigeminal neuralgia.  I recently stumbled across something that clearly and confidently stated that an individual could experience trigmeinal nerve involvement.

Right now I'm attempting to identify doctors in PA (I'm a native of PA) with plans to see one there, but am keeping my options open.  I consulted with a doctor here in GA last summer who is supposed to be an LLMD.  He may treat existing cases, but I'm not really sure he is proficient in diagnosis of lyme.  He really didn't know what to do with me and really did not prove helpful.  My current integrative doctor mentioned lyme at my last appointment.  Now I'm working to get everything sorted out.

I hope this helps!  Wishing you success in healing!

[Kim]

Jay, your description of TMJ pain brings back horrible memories for me.  I was in a car accident that dislocated both my jaw joints and suffered exactly what you are describing.  Absolutely the worst pain I've ever had in my life.  Lyme is also part of my pea soup and the bacteria love to hide in the weakest joints so I still flare in that area.

You are smart to eat soft foods for now.  I became quite the chef for soups and stews.  Absolutely no gum, nuts or chewy foods.  Warm, moist pads over the joint helped me, and if you haven't been fitted for a night guard, you should check into it to keep from grinding at night (it also will relax your jaw and prevent it from locking).

You really have my sympathy on this one…….kim

[shaz]

Hi Lauris,

Thanks for the detailed reply.  Your symptoms sound very painful and dibilitating.  I'm glad to hear you're seeking out a knowledgable LLMD.  When I began this journey earlier ths year it was Maz who was an incredible resource of information and helped me seek out my LLMD.  In Canada, we have almost no experts in Lyme. 

My symptoms are very different from yours and interestingly, I found the opposite when researching lyme.  Most research I found mentioned Trigemenial neuralgia of various sorts but almost nothing to do with cranial/occiput area where I'm experiencing chronic pain daily.

I also wish you the best of luck in getting well!  Take care,

Shaz

 

 

[shaz]

Hi Maz,

I think I may have sent you the reply meant for Lauris in regards to her email – let me know if that's what happened.  I'm obviously not very adept at this board….

So good to hear from you and I think of you often.  We'll have to chat sometime in the near future.  How's the Shardt protocol working for you?  are you still on it?

Not sure if we've spoke since my first follow up with Dr R. about 2 wks ago, but I did the Western blot when I was in NY seeing him and it came back with a positive on 6 bands so at least I know I'm not crazy!!

The protocol he has me on has certainly helped with many symptoms (which I believe we spoke about on the phone).  I have better energy, not nearly as much nausea/gastro upset etc but several other symptoms persist.   My gut feeling is that this regime has gone about as far as it can go and won't do the trick to kill these nasty critters off.  I asked him what his next move might be and he mentioned possibly intravenous……not sure how I feel about that.  Have you ever tried it Maz?

Anyways thanks for getting in touch and let me know how you're doing.

Shaz (Sharon)

Edited by RBFV to remove physician's full name and replace with initial only, as per Support Forum policy. Thank you for your understanding.

[Maz]

[user=1009]shaz[/user] wrote:

So good to hear from you and I think of you often.  We'll have to chat sometime in the near future.  How's the Shardt protocol working for you?  are you still on it?

Not sure if we've spoke since my first follow up with Dr R. about 2 wks ago, but I did the Western blot when I was in NY seeing him and it came back with a positive on 6 bands so at least I know I'm not crazy!

I asked him what his next move might be and he mentioned possibly intravenous……not sure how I feel about that.  Have you ever tried it Maz?

 

Hi Shaz,

Thanks for your kind thoughts! Looks like your message to Louris was posted just fine…it's just above on this thread.

No longer on the Shardt Protocol…only did that for about a month and then in pulses in my first year. Currently on low dose AP (see signature below), but planning on switching things up a bit in the near future with my LLMD and asking if I can pulse in some Flagyl, maybe in place of azithromyin. Gotta keep the critters on the run!

Wow, Shaz, sounds like your IGeneX tests were pretty undeniably positive, eh? I'll have to dig out the link for you to check against your results to figure out what it all means. The different bands test for different things. Well, the good part is that you know you're on track with this and your long distance trek to Dr R was well worth it! You're sure not crazy….it's the ridiculous situation that is causing so much denial about Lyme with the poor diagnostic testing and inadequate treatment when it becomes chronic.  

With the TMJ probs you're getting (very common in Lyme), it may be that the IVs will help. I never had a lot of neurological probs – more musculo-skeletal – so the IVs weren't big on my agenda. LLMDs tend to use the IVs more where there is neurological involvement. Unfortunately, the road is very long with chronic Lyme and, as you mentioned, the critters are always there waiting for an opportunity to seize hold again. The best hope is to get the immune system strong enough and up and running again properly so that it can ward off future attacks. I'm not sure I'd want the portacath into the chest for IVs that many Lymies have, but if it was a short series of IVs, I might try it personally to see if things improve. If so, then at least I'd know it was important to keep going with the orals. I just don't know how having the Rocephin IVs would work for you up in Canada with Dr R down here or even if his script would be valid up there. You might have the problem of finding a resident Canadian physician to rewrite it for you. 😕 Dr R, although in NYC, is a Canadian, so he might know how to deal with the system.

Difficult decision for you, Shaz, I know. Maybe if you get all the nitty gritty details about the IVs, first, it would help to make an informed decision. Really glad to hear some of the other issues are resolving – something must be working!

All in all, I'm doing pretty well…still having occasional flares, but these are pretty short-lived and more palindromic in nature….kind of how the Lyme started for me. Can be debilitating when it happens, but nothing I can't deal with and is a far cry from being bed-ridden with all my limbs on pillows!

Will look fwd to your update when you figure out your next steps. Take care, Shaz!

Peace, Maz

PS Just editing to add in the WB interpretation thread on the LymeNet BB:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0 

[louris]

[user=40]Kim[/user] wrote:

Jay, your description of TMJ pain brings back horrible memories for me.  I was in a car accident that dislocated both my jaw joints and suffered exactly what you are describing.  Absolutely the worst pain I've ever had in my life.  Lyme is also part of my pea soup and the bacteria love to hide in the weakest joints so I still flare in that area.

You are smart to eat soft foods for now.  I became quite the chef for soups and stews.  Absolutely no gum, nuts or chewy foods.  Warm, moist pads over the joint helped me, and if you haven't been fitted for a night guard, you should check into it to keep from grinding at night (it also will relax your jaw and prevent it from locking).

You really have my sympathy on this one…….kim

These jaw and facial problems are pure evil, aren't they?  This problem is not mechanical based on what I've been told by the dentist, oral surgeon, and tmj doctor.  It is according to the “experts” (i.e. neurologists) purely a cranial nerve problem.  At it's worst, I can touch my lip and experience what seems to be the equivalent of a jab to the head by a professional boxer 😀 (hey I have to find some humor in the situation).

I find what you state about the bacteria loving to hide in the weakest joints causing them to flare very interesting.

[Author]

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