timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Hi all~
I have C. diff and lyme. Not a good combo.
I also have peripheral neuropathy due to the lyme.
I have only taken vanco for the C. diff. I have not taken Flagyl, for I'm afraid that it may aggravate my PN.
Any of you take flagyl that have PN?? Does it aggravate it?? What are the side effects of flagyl??
Maybe it would help treat my lyme too, for my lyme is getting worse.
Thanks in advance....Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Carol B
Unregistered
posted
Couldn't find any of your abbrev. on my handy dandy list so can't respond . Just know my LLMD has plans to put me on flagyl soon, which peeked my interest. Carol
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cactus
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Member # 7347
posted
Yes - flagyl aggravates PN for me. I pulse flagyl once monthly & PN goes through the roof, so I dread it (& the miserable herx).
For me, the PN symptoms flare badly while I'm on flagyl & become somewhat more manageable when I'm off.
Also, I have a friend who feels that flagyl worsened her PN long-term, possibly permanently.
She was pulsing flagyl, but added in extra rounds at higher doses - trying to speed up treatment last summer. Didn't work, and her PN is definitely worse, despite being off flagyl since then.
She did find an explanation for this, in her research - maybe someone will come along who has it at hand. I'm not up to searching for it (pulsing flagyl as we speak!), but can later if needed.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Yes, I had 7 mo. flagyl and it added to my peripheral neuropathy (my main symptoms), making my toes numbish. I wouldn't take it over 3 mo. max if I were you. I now use tinidazole (Tindimax) instead, as it hasn't given me the same problem and is the same class of drug, plus has been tested better for long term safety. I think the capsule hand-compounded tinidazole was a bit more effective than the tablet Tindimax, probably because of digestion/assimilation issues, so you might want to try the capsules first. Wellness Pharmacy and others compound it, call 1-800-227-2627. I can get Tindimax tablets at local drugstores like usual meds, and is less hassle filing with Rx insurance, since Wellness won't file for you.
Posts: 193 | From Virginia | Registered: Oct 2002
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
PN = peripheral neuropathy, in this case, right?
Carol, you made me want to double check! Hope I got it right, otherwise disregard anything I said...
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Below is some past posted info from researcher Dr. Martin Atkinson-Barr's old site. (PhD, Not an MD.) Nitroimidazoles in Lyme
Hypotheses on What Nitroimidazoles [class of drug for flagyl & tinidazole] do to the Lyme Spirochete
McFadzean & Squires studied the effect of metronidazole on the syphilis treponeme, the motile spirochetal form, and reported that it did impair the motility. Brorson & Brorson reported that metronidazole had no effect on the motile Lyme spirochete. How does one explain the difference in these observations on similar microorganisms? Spirochetal movement demands a viscous medium, one that can support shear (try spinning a corkscrew in water - there's just no resistance). In a low viscosity medium, like water, the spirochete will not be able to generate sufficient shear to effect motion, therefore any effect of metronidazole on motility will not be visible. This will require further investigation but, for the present, I do not subscribe to the notion that metronidazole is inactive against the classic spirochetal form.
Dorward et. al. also demonstrated that the Lyme spirochete can invade host cells. It seems likely that metronidazole will interfere with this process if it affects the motility of the axial filaments. Similar observations on T. denticola support the hypothesis that metroidazole prevents cell invasion. Note that Dorward's fine paper claimed that cell invasion had not been observed in other spirochetes - this is incorrect as the T denticola work from McGill University shows. I believe that cell invasion is common to spirochetal bacteria.
Brorson & Brorson did observe a bactericidal effect of metronidazole on the cyst form of Lyme.
Some words of explanation are necessary at this point. It has been observed for many years that spirochetes are able to exist in a variety of forms. Of course the spirochete, resembling a corkscrew, is the classic and recognizable configuration. Some of these forms have been given names: cysts; granules; blebs; string of pearls; L-forms. The importance of these morphologies in pathogenesis is not known but the classic spirochete is rarely seen in host tissue. These observations are not limited to Lyme disease. Perhaps the most widely studied spirochetal infection is syphilis, which demonstrates all of these phases.
It has commented that the severity of Lyme disease to the human host is out of all proportion to the quantity of spirochetes found. One explanation is that most of the Lyme organsisms are in the other forms. Brorson & Brorson were able to show that the spirochete rapidly converted to the cyst for when incubated in cerebrospinal fluid. We may therefore infer that cysts are present in the human infection.
It should not be thought that the cysts are a kind of vegetative spore, or seed. The cysts are active and produce toxins. On reversion to the spirochetal form each cyst gives rise to multiple spirochetes.
It is my hypothesis that perhaps as much as 90+% of the Lyme organism present in the human body is in non-spirochetal forms.
When the Lyme spirochete invades a host cell it forms a vacuole within the host cell. As a consequence of the invasion the exterior form of the host cell changes dramatically. It is inconceivable that such a dramatic shape change has no effect on the host cell's function. As a vacuole, there is less need for a strong cell wall and the bacterium may well be cell wall deficient, rendering it invulnerable to antimicrobials, like the penicillins, which target bacterial cell wall formation.
A wonderful book, replete with references, on non-classical forms of all kinds of bacteria is Prof. Lida Mattman's "Cell Wall Deficient Forms: Stealth Pathogens", published by CRC Press. Prof. Mattman is currently actively involved in Lyme research.
It is possible therefore that the nitroimidazoles act in-vivo in several ways:
Reduction in motility of the spirochete, limiting disease progression and rendering the spirochete susceptible to immune system attack.
Inhibition of host cell invasion, especially host immune cells.
Bactericidal activity against cyst forms.
Bactericidal effects on intracellular vacuole forms of Lyme (and other spirochetal diseases).
The use of the nitroimidazoles is not limited to Lyme and syphilis. There can be little doubt that these drugs will be found useful in a wide range of spirochetal diseases, including relapsing fever, late-stage syphilis and perhaps leptospira. Of considerable interest are those common diseases where spirochetes have been conjectured: multiple sclerosis and rheumatoid arthritis. Lyme disease is in a sense a model of a disease that resists elimination by popular antibiotics.
What To Expect When Taking A Nitroimidazole The Lyme patient's response to taking Flagyl, or similar, is rather complex. On the basis of talking with about 100 chronic Lyme patients who have taken Flagyl and closely observing three Lyme patients on Flagyl/tinidazole I think there is a general pattern.
Days 1-6 Mild worsening of symptoms - aches, pains and general malaise. There are often palpitations and some difficulty breathing.
Days 7-10 The honeymoon. Patients feel dramatically better, often with all pain gone, energy returns.
Days 11-21 Unfortunately the honeymoon does not last. While the joint and low back pain may go away, malaise and neurological problems come on with vengeance. Profound lack of energy and motivation.
Days 21-33 Depression. For no known reason deep, deep depression starts about now. It may lead to suicidal thoughts and be very stressful for family members. Being forewarned helps greatly so Lyme patients should warn all those around them before it happens. Depression typically lasts about 10 days. Some Lyme patients react badly to anti-depressants so there should probably be avoided.
Warning! Days 40-60. A number of patients have experienced shortness of breath and palpitations at about 6 weeks. These events may require an ER visit. This may be due to a sudden die off of the bacteria.
Days 34-60 Gradual improvement, especially in neurological status, manifest as "good days". Eventually the "good days" become seven days per week. Profound fatigue remains however and will not abate perhaps for six months. At 60-90 days there should be no symptoms other than fatigue. Time to take a vacation!
Remember individual cases will differ from this average roadmap. Some patients have responded beautifully in a short time and seemingly have stayed well. One lady wrote that a low dose of Flagyl enabled her to escape from her home for the first time in 4 years and was now mountain biking.
Elevated Liver Enzymes One of the classic signs of Lyme disease is alcohol intolerance. This suggests that the liver is an important site in the progression of Lyme disease.
Some patients have experienced elevated liver enzymes while taking Flagyl. This could be due to a side effect of the drug or a consequence of killing the Lyme spirochete within the liver: we just don't know as yet. If it is a side effect then perhaps an alternative nitroimidazole would be an option. If it is a consequence of killing Lyme in the liver the elevated enzyme level may be part and parcel of effective treatment. More work needs to be done.
Peripheral Neuropathy In a similar way the nitroimidazoles may affect the peripheral nervous system. Peripheral neuropathy, typically manifest as numbness of the feet, has been recorded as a side effect of Flagyl treatment. It may be so, but equally it may be a consequence of treating Lyme-infected nerves.
The reports of Flagyl-induced peripheral neuropathy came only in recent years. Did those cases perhaps have Lyme disease? Why wasn't this side effect noted years before? Do the other nitroimidazoles have the same effect as Flagyl? It seems, just seems, that tinidazole is not so likely to cause peripheral neuropathy. That may be because tinidazole is a slightly larger molecule and may not penetrate dense nervous system tissue so readily. On the other hand is peripheral neuropathy just a side effect confined to Flagyl. We don't know.
Recommendation: stick with tinidazole.
Posts: 193 | From Virginia | Registered: Oct 2002
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posted
This seems to be the chicken or the egg theory with Flagyl causing PN. All I can tell you is what happened to me. The first abx my LLMD put me on (after diagnosing me with late stage/neuro Lyme, and my ELISA came back positive for Lyme),
was a combo of IV 2g Rocephin and 1500 mg Flagyl daily for almost 4 months until I developed PN in my feet, and some numbness in my fingertips.
I had complained about it to the infusion nurse the week before, along with the dr.'s personal pharmacist, but neither seemed like it was a cause for alarm.
The next week when I saw the LLMD he immediately pulled the PICC and took me off all abx, in fact, he practically booted me out the door.
He told me he was referring me to a neuro, and he was sure they would find out what was wrong with me, and he was certain there would be a cure.
I said "What about the Lyme? He said that sometimes there are false positives, yada, yada, yada.
I left there numb, (literally). That was in April. The neuro still can't find out what's wrong, and I am in so much pain I can't believe it. I"m on neuropathic pain meds for my feet, and the dosage keeps having to be increased.
So, I have no idea if I have Lyme, and I now have a condition that I don't know whether will be permanent or not. It could have been the Flagyl, or it could be caused from Lyme (which I had, but then I didn't). All I want is some answers!
If you Google Flagyl it will tell you the side affects, and most of them list PN.
I'd like to know the severity of your PN, and what you're doing to treat it.
Healthy Healing, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Thanks for everyone's replies.
PN = peripheral neuropathy (to clarify )
Jill~ I had latent lyme...I was very healthy...but a steroid shot to my knee activated the latent lyme. I started with bizarre symptoms. My nerve symptoms were a burning left foot (high pain); numb left calf, and tingling fingertips.
After knee surgery, where I was given IV vanco, I developed full body nerve pain that was excruciating. This was my herx reaction to the vanco.
I ended up with scalp burning pain that was dreadful, left foot pain that was also bad, and nerves that creep, crawl and spark and burn most anywhere on my body.
Since starting treatment, the nerves have been less painful.
I would suggest that you find another LLMD to evaluate you. Nerve pain is a symptom of lyme. It is good to have a neurologist look you over though. To rule out other things. Most of them don't have a clue about lyme, however.
If you live near NY, I can give you the names of a good LLMD, and some neurologists who at least don't scoff at the mention of lyme.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Carol B
Unregistered
posted
I figured out PN on my own-but what about C-diff?
Anyway I am so glad I read this thread because I don't need any deeper depression to deal with. I think I will pass on the Flagyl.
I just skimmed over this post and it's responses but I noticed vancomycin mentioned a couple times so I wanted to comment on that. I was given IV vanco in 1993 and I lost hearing in my right ear from it. It's very strong and ototoxic (toxic to the ears). If you notice any ringing in the ears, tell your doc immediately because it can cause permanent hearing loss. Luckily for me, it only happened to one ear, and I noticed it right away, so it could have been worse.
I just joined this group recently and haven't posted much but I'm starting to believe I might have Lyme's. I had a bite of some kind, with an obvious rash, a little over 3 years ago. The docs suspected it might have been a brown recluse spider bite but I have my doubts. I was diagnosed with fibromyalgia and I'm now on SS Disability so my mission now is to find a lab, that will accept Medicare, and do the accurate testing I need to determine a positive Lyme diagnosis, if that's what I have. My local doc is willing to treat me with the long-term antibiotics IF I can get that positive diagnosis. Does anyone know if IGeneX accepts Medicare? If not, what Lyme literate lab does? Any advice or suggestions would be greatly appreciated. Thanks, Dianne
Posts: 8 | From northwestern PA | Registered: Jun 2006
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Carol~ C. diff is short for Clostridium difficile, which is bacteria that can proliferate in the gut due to an imbalance in gut flora often due to antibiotic use. It is NOT fun to have. I am the current CEO of the Poo R Us Union and a sustaining member of the Abdominal Agony Association, since I've had the C. diff for 6 months now.
Dianne~ IV vanco and oral vanco act differently in the body. IV vanco is very strong. It was given to me during my knee surgery, when I didn't know lyme was my problem, and I ended up in full body nerve pain that was excruciating.
You're correct, it can cause hearing damage.
On the other hand, oral vanco is NOT absorbed systemically, it only works in the gut. So, it kills off C. diff (along with the good bacteria) but does not kill the lyme, for it is not absorbed.
Igenex does not accept any insurance. MDL lab might...not sure. Others may know. Try a separate post for your question. You'll get more answers that way.
Read the newbie info...lots of good stuff there.
Please inform your doctor that lyme disease is a CLINICAL diagnosis with lab data supporting ONLY.
Click on www.columbia-lyme.org. Click on "ask the doctor" there is a question there that goes something like "Can someone have a negative lyme test and still have lyme." The answer is YES.
Welcome (sorry you have to be reading this stuff)
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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