A 59 year old patient was prescribed Cipro in 1992 for a urinary tract infection. He experienced a variety of progressive symptoms. These included burning sensations, shortness of breath, fatigue, confusion, chills, sleep disturbances, night sweats, a feeling of alternating hot and cold, ocular problems, increasing cognitive dysfunction, a sensation of electric shocks and many other symptoms. After a long evaluation it was decided that he was suffering with a severe quinolone reaction; he was prescribed Klonopin which he has taken every since. The Klonopin has been effective.
He recently visited my office because he was not feeling well. He had been off Klonopin for 5 months and symptoms were returning. Off the Klonopin recently--he developed: severe fatigue, sleep disorders, tinnitus, head pressure, a sensation of electric shocks, numbness and tingling, joint pain, increased anxiety and hot and cold sensations.
Upon further questioning, perhaps he has not felt entirely normal on Klonopin. He has suffered with stiff fingers, anxiety, periodic weakness in his legs. dry mouth with dental carries and progressive brain fog associated with progressive memory loss. He has written these symptoms off to normal aging.
His wife has been successfully treated for chronic Lyme disease.
An exam showed evidence a stocking glove pattern of decreased sensitivity to pin prick, a loss of vibratory sense and absent deep tendon reflexes in his ankles.
A brain MRI showed non specific, periventricular white matter changes compatible with microvascular ischemic changes. He has no risk factors for this disease.
An initial set of lab studies (lLabcorp) showed: CD57 24, Bb Western blot no bands, Bababesia duncani positive, titer 1:256, all other studies negative. He vitamin D levels were properly balanced. There was no evidence of autoimmune dysfunction or inflammation.
He is an outdoors-man. He lives in a wooded area frequented by visiting deer.
I sent off another Lyme Western Blot to Clongen. (pending)
Many questions remain in this case, answered at this point. Is this truly a case of quinolone toxicity? If so, why have symptoms persisted for 17 years. Are quinolone reactions, at least in some cases, really "Herx" reactions in patients with asymptomatic but disseminated Lyme disease? I have documented such a case in a previous post. He does test positive for Babesia; this suggests exposure to tick borne illness. He has many symptoms and signs frequently seen in chronic Lyme disease. Why has Klonopin, a sedative, been so effective in stabilizing many of his symptoms for so many years, and why does he quickly relapse off Klonopin? The persistence of symptoms 5 months after stopping Klonopin makes withdrawal an unlikely explanation for this phenomenon. Does Klonopin. a GABA agonist in the brain have any positive benefits for some Lyme patients? For now, I have questions, not answers.
I hope the second Western Blot will be telling.
I have the same history. Had anxiety and heart symptoms for many years, took klonopin, which barely held symptoms at bay.
ReplyDeleteI came down with Prostatitis and took Levaquin, then all hell broke loose exactly as you describe above.
Klonopin helped relieve symptoms but I still did not feel very well. Low body temp, anxiety, panic, then GI problems and low grade flu feeling.
Took long term antibiotics (Doxy, Zith, Rifampin) and was able to go off the klonopin and feel very well now.
I think I was exposed to Lyme (many ticks in my area) and had it for many years with low grade symptoms, then the Levaquin set off a herx and sent me downhill.
My two cents.
Perhaps those with Lyme and Bartonellosis that have a lot of overexcitatory CNS phenomena might benefit from neurostabilizers or GABA drugs. Hubby benefits quite a bit from Lamictal.
ReplyDeleteSince Bartonellosis is so hard to detect in chronic patients from personal experience, perhaps those quinalone reactions may be due to that component of the tick bourne diseases?
Question: if "His wife has been successfully treated for chronic Lyme disease" was he ever tested for it too?
ReplyDeleteQuestion: can the medicine he took, klonopin, might have worked as a "pain killer" masking the symptoms but not curing the person?
Question; how is that we survive to having so many bugs inside with no proper treatment?
It is easy to think that quinolones do the bad job, but what if they are the ones that wake up the organism to defend from the dangerous bacteria? quinolones have deeper penetration, might be what we really need?
Hope he can really recover!!!
Thanks for trying!!!
I have been following your blog and find the information you post tremendously helpful-not only for me, but I often relay the info to my PCP in helps of treating my illness! I was bit in june 0f 08-had the rash but didnt seek treatment. since then, i"ve been diagnosed with CFS, Fibromyalgia& poss MS amongst other things!!I tested "ëquivocal", then neg. on the western blot however I did convince my pcp to start me on doxycyline just recently! I called your office but they said you are no longer taking new patients-very upsetting! I live in howard county-is there anyway you could take me on as a patient or if not, could you consult with my pcp regarding treatment?? He's trying to help me but is not a LLMD! I would greatly appreciate any help you could offer-I'm very ill and very frustrated!! thanks!
ReplyDeleteYour post could open a hornet's nest for some patients.
ReplyDeleteFor example, had hubby in the ER today for the 2nd time this week. Because the doc could not understand his neuro presentation he labeled hubby as psychiatric because his tremors and myoclonus and muscle rigidity and loss of speech respond to IV Ativan.
In my opinion Ativan, Klonipin, Zanax and other benzo's just mask the neuro symptoms the same way that pain meds work for others. Don't think these drugs do anything treatment wise except maybe in some cases prevent actual seizures.
Bea Seibert
Hello,
ReplyDeleteIve been reading your blog too and had called in the beginning of September , but never made an appt. I called today and you are closed for new patients. Do you know when you might open again? thanks
I have found great benefit from klonopin. It is the only thing that can tame my neuro sx. and headaches. It is an anti-epleptic and I feel that it has some neuro protective effect. My sx are not psychological.
ReplyDeleteOff Topic Doctor,
ReplyDeleteConstant Fatigue Syndrome shown to be correlated with a retro virus.
http://www.nytimes.com/2009/10/09/health/research/09virus.html?em
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/85172?#000007 there was a discussion on ssri and neuro lyme at lymenet a while ago
ReplyDeleteThis post is VERY interesting to me as it is remarkably similar to my situation. I had a devastating reaction to a short course of Cipro given to me for a UTI with all of the features you describe here. This happened in 2006. (I was 41 y/o.) I am still far from normal.
ReplyDeleteI am a clinician myself. What tremendous frustration not to be able to heal myself or even to get a clear clinical picture of what occurred.
I was profoundly affected. I was an avid traveler and busy and active professional until taking the medication. The effect was swift (came on within a day of initiating treatment with Cipro) and was prgressive over months as you describe.
I began to wonder about an infectious process after "herx" like reactions to subsequent abx.
I have heard that Klonopin provides symptomatic relief for some affected by Cipro. Med literature indicates that in certain individuals (and lab animals) Cipro and Fluoroquinolones affect GABA receptors.
I am also someone who spent a great deal of time camping and outdoors as well as living and working in rural areas on the East Coast and Southwest and Northern Europe, Asia and Latin America. I now live in the DC area.
As hard as it is to say, what has happened has been disabling, and lifechanging.
I would tremendously appreciate your posting any thoughts and/or findings r/t this case as I continue to to find answers for myself. I am currently seeing someone who is trying to r/o Bartonella. I have not had Lyme testing other than through Lab Corps which only showed band 41.
Thank you for all of your work.
I currently have a back log of patients and have had to temporarily close my practice to new patients suffering with tick borne disease.
ReplyDeleteI will be accepting new patients in the next month or two. If you call my office my staff should be able to give you updates. The dates are not written in stone; they are based on my ability to offer my patients the care they deserve.
Below is a link to the 2005 Study "Gabapentin for the Symptomatic Treatment of Chronic Neuropathic Pain in Patients with Late-Stage Lyme Borreliosis: A Pilot Study."
ReplyDeletehttp://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=DRM2005211002123
For any advice for Aussie Lyme sufferers or the few helpful Dr's please leave comment on my site:
www.lymegreenaustralia.blogspot.com
Quinolones harm tendons and the central nervous system in generally healthy people with bladder infections and no Lyme disease. They are unsafe and should never be used for tick borne infections since the damage done by quinolones looks just like symptoms of Lyme disease. Furthermore, the damage is all but untreatable and may persist for years.
ReplyDeleteHere is a link to more information by Dr. Jay Cohen, MD. He is a pharmacist who specializes in research on drug risk factors.
http://www.medicationsense.com/articles/jan_dec_08/toxicity070508.html
He recommends glutathione injections to treat quinolone damage. This fits with the original cause of quinolone damage which may be from blocking receptors for magnesium on cells.
This is a summary I wrote from a conversation with Rich Van Konynenburg, PhD. Any errors are mine, not Rich's.
In order to form ATP or energy human cells must bond with magnesium. The attachment of magnesium to the cell is formed at two oxygen molecule links. When these links have enough magnesium and are blocked by the magesium any further magnesium will signal that the cells doesn't need more and the cell will shut down until the attached magnesium is used up and the oxygen molecule links become empty again.
Quinolones bind to these oxygen molecules but will not be able to be used by the cells to produce energy. Neither can the quinolone signal the need for more magnesium. Because mitochonrial function is blocked the body cannot produce enough glutathione. Magnesium is lost, and the patient has no energy. Low glutathione levels produce oxidative stress. Magnesium is needed at the NMDA receptors in the brain. Without adequate magnesium NMDA receptors are in a constant state of excitotoxicity.
How to fix? Ongoing vicious cycle started????
Possible solutions: Rich V.'s simplified methylation protocol, IV glutathione, nondenatured whey protein. Nondenatured whey protein is excellent to raise glutathione levels and probably is the fastest way to get the Cipro or other quinolone damage over with. I always bought ImmunoPro RX, but it has become terribly expensive. Rich says True Whey from Source Naturals is just as good and cheaper, much cheaper. Here is a link.
http://www.healthsuperstore.com/p-source-naturals-true-whey-16-oz.htm
Paula Carnes
This is very interesting to read, as I was diagnosed with Lyme in June (positive Western Blot) after I began having joint pain. I do not recall any tick bites or rash, ever. The interesting part: in May I was sick and my Dr. treated me with a quinalone drug. A month later I had the symptoms of an advanced case of Lyme disease.
ReplyDeleteNow, if the drug set off a herx reaction, understandable. However, why would I continue to exhibit symptoms after the initial die-off and discontinuation of the drug?
Maybe you should get some of the nondenatured whey protein powder I mentioned above and try it. Can't hurt.
ReplyDeleteIsn't the protien high in glutamate, which is the substance we should avoid? I am a little confused by all the information I have read. Could you clarify for me? Thanks.
ReplyDeleteNon denatured whey protein is a glutathione precursor. It does not contain glutamate or MSG. It must be non denatured. Here is a link which covers this.
ReplyDeletehttp://www.evenbetternow.com/als-diet.asp
"Why does the patient continue to relapse when off Klonopin?" Because Klonopin withdrawal can take YEARS to recover from. Benzos change the receptors in the brain which can take years to revert back to normal. Yes, the patient may have lyme, but please explore the real possibility that this patient is in protracted withdrawal from a very potent drug. Just look around the Internet to see the 1000s of people suffering from benzo withdrawal syndrome...which, by the way, mimics lyme symptoms exactly. It takes approx. 6 - 36 months to return to normal after long-term use of a benzo. Please don't overlook this fact when prescribing benzos to lyme patients.
ReplyDeleteCipro and Klonopin are two different drugs...
ReplyDeleteGeneric Cipro
I have previously benign, undiagnosed dormant lyme that seems to be activated into abrupt late nuero lyme by 3 doses of cipro. The change appears permenant, not a herx, as 9 months later I am still house bound. What do you think of the research about quinolone antibiotics activating virulant bacteriophages? John Travis in Science News (July 2003;164)
ReplyDeleteI have previously benign, undiagnosed dormant lyme that seems to be activated into abrupt late nuero lyme by 3 doses of cipro. The change appears permenant, not a herx, as 9 months later I am still house bound. What do you think of the research about quinolone antibiotics activating virulant bacteriophages? John Travis in Science News (July 2003;164)
ReplyDeleteSame story as mine. Took levaquin for a sinus infection, and was immediately overwhelmed with joint pain (its known to cause tension and muscle pain, not joint pain) and within a few weeks had all symptoms of late stage Lyme mimicking ms.
ReplyDeleteNever been the same since. Took about 4 months to get properly diagnosed after seeing 20+ doctors, but ultimately one sent my lab work to igenex, 4 positive WB bands and dna of borrelia detected in my blood. Most just thought the problem was quinolone toxicity.
I had known that something was wrong with my health for many years prior to that happening. But I still wonder how much damage was caused from the levaquin and how much from the herx. I now have constant joint pain, which I never had prior to the levaquin.
I hear you. We are all in a confounding mess. How do we know if the quinolones damaged us or if it is Lyme? And I have another question. How do you know your pain is joint pain or tendon pain? I think my pain is in the tendons because the inside of the joints do not hurt. But maybe there are no nerves inside the joints, so the only pain we feel is out and around the joint???
ReplyDeleteFlouroquinolones activating nasty pathogenic bacteria to release neurotoxins may explain part of the Fluoroquinolone Toxicity Syndrome . . . (and it is a syndrome in its own right) . . AND, the immune system's response to lyme and other stealth pathogenic bacteria and the response to toxins put out by these bacteria when they are under attack by antibiotics might produce some similar symptoms, too . . . . . However, Flouroquinolone toxicity includes the trademark destruction of human cells (direct toxicity) (remember these were originally chemo drugs) to tendon cells throughout the body, cartilage cells and others + mito dna destruction + neuromuscular weakness/myasthenia gravis, psychosis, and other symptoms well documented in patients victimized by Flouroquinolones that don't have lyme . . . . some of the constellation of 'floxed' (Flouroquinolone) symptoms [esp brain fog, others??] might come from the mechanism you're discussing and might be similar to lyme brain fog in it's genesis but we don't know . . . Don't discount the power of Flouroquinolones to destroy lives in their own right. Also, the damage done by Flouroquinolones to the mitochondria and cellular energy making mechanisms will also lower the immune systems ability to contend with opportunistic pathogens.
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