Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 Dr Schardt left me a message and is apparently coming to NY in May so I guess I will get to talk with him then and will report. I find reports such as the one below very frustrating. , you are a veterinarian. Who is " we " . How many patients are involved, is this laypeople, it is reported as if a doctor is overseeing it. How long have the patients been on it, and what improvements are they seeing? Dr Schardt did not mention doing concomitant antibiotic therapy, although I saw on another list he did advise it. Anyway, this report is nothing one can hang one's hat on because it does not say who is overseeing this, how many patients are involved, etc. I know this is only the internet nonetheless with new therapies, it would be appreciated if more robust and precise detail were given (at least appreciated by me in any case). Sorry to sound annoyed but it's too important a potential therapy to post so vaguely. In addition, speculating that it might take 9 months sounds completely arbitrary, and then speculating that it may be a true cure. You wouldn't know that without a sufficient number of patients on the therapy longterm and then not relapsng over a sufficient period of time. > > I continue to be impressed with the response borreliosis patients > are having to high dose fluconazole (200 mg / day) therapy. Based > on patients reports of symptom relief, this stuff really seems to > get to the borrelia in the CNS. > > What we've learned about fluconazole in the past few months: > > Variable response to therapy in patients...some have serious herxes > others don't. Some respond with noticable benefits in a few days, > others take several weeks to a month. > > Those that herx initially; we've noticed that if the patient starts > with a low dose (50 mg) and gradually increases the dose over a few > week period to 200 mg / day, they tolerate it much better and the > herx reactions are less severe. As always, I encourage a > comprehensive anti-inflammatory regimen. > > Most of these patients are taking low-dose doxy or mino along with > the fluconazole. Some are only taking fluconazole and also doing > well. > > The duration of fluconazole therapy is still questionable. I'm > suspicious we will end up with a 9-12 month regimen for refractory > cases. But, this may be a true remission...similar to what we see > with TB or leprosy. > > In any case, this is the most effective anti-microbial for chronic > borreliosis I've seen thus far. IMO, it's a significant > breakthrough! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 I would like to add more input to ’s note about using Fluconazole 200mg daily. I am one of the patients undergoing this treatment & am under the care of a Physician that corresponds frequently with. I tested highly positive for borellia via Igenex testing. The mainstream doctors tell me I have lupus/scleroderma overlap syndrome. I’m still not sure what I have. Someone’s right & someone’s wrong. The fact that my IGENEX test was positive is not convincing to me that I’m conclusive for borrelia b/c it’s my understanding that some of the weird antibodies I have might cross react with the bands causing a false positive. I am on day 60 of Fluconazole 200mg a day. I didn’t take babysteps. I jumped right in with the full dose in addition to 200mg of Minocin daily. I have to say, the 1st three weeks I was a lot more fatigued than normal. The fatigue is sometimes hard to gauge b/c it is my worse enemy, so I didn’t know if it was a consequence of the Fluconazole or not. It was pretty powerful though. Because of sheer will & the fact that I have young kids that need me, I just tried to keep putting one foot in front of the other. I am happy to report that I have come out of the fog. It’s too early to say if this is the ticket or not, I’m a skeptic by nature. Let’s just say I will never be vulnerable to the placebo effect, b/c I’m so skeptical of these new found cures. I’m hopeful for the first time in a long time though. I need to thank for his encouragement through this. Patrice From: infections [mailto:infections ] On Behalf Of free2reckon Sent: Saturday, April 16, 2005 8:24 PM infections Subject: [infections] Fluconazole therapy update...FYI I continue to be impressed with the response borreliosis patients are having to high dose fluconazole (200 mg / day) therapy. Based on patients reports of symptom relief, this stuff really seems to get to the borrelia in the CNS. What we've learned about fluconazole in the past few months: Variable response to therapy in patients...some have serious herxes others don't. Some respond with noticable benefits in a few days, others take several weeks to a month. Those that herx initially; we've noticed that if the patient starts with a low dose (50 mg) and gradually increases the dose over a few week period to 200 mg / day, they tolerate it much better and the herx reactions are less severe. As always, I encourage a comprehensive anti-inflammatory regimen. Most of these patients are taking low-dose doxy or mino along with the fluconazole. Some are only taking fluconazole and also doing well. The duration of fluconazole therapy is still questionable. I'm suspicious we will end up with a 9-12 month regimen for refractory cases. But, this may be a true remission...similar to what we see with TB or leprosy. In any case, this is the most effective anti-microbial for chronic borreliosis I've seen thus far. IMO, it's a significant breakthrough! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 One good thing, diflucan is off patent in the US. And Cosco in phoenix was selling 200mg fluconazole (Taro brand from Israel) for about 1.30 USD per pill, but I also noticed some places still have a high price. --- Patrice <PKR527@...> wrote: > I would like to add more input to 's note about > using Fluconazole 200mg > daily. I am one of the patients undergoing this > treatment & am under the > care of a Physician that corresponds > frequently with. > > > > I tested highly positive for borellia via Igenex > testing. The mainstream > doctors tell me I have lupus/scleroderma overlap > syndrome. I'm still not > sure what I have. Someone's right & someone's > wrong. The fact that my > IGENEX test was positive is not convincing to me > that I'm conclusive for > borrelia b/c it's my understanding that some of the > weird antibodies I have > might cross react with the bands causing a false > positive. > > > > I am on day 60 of Fluconazole 200mg a day. I didn't > take babysteps. I > jumped right in with the full dose in addition to > 200mg of Minocin daily. > > > > I have to say, the 1st three weeks I was a lot more > fatigued than normal. > The fatigue is sometimes hard to gauge b/c it is my > worse enemy, so I didn't > know if it was a consequence of the Fluconazole or > not. It was pretty > powerful though. Because of sheer will & the fact > that I have young kids > that need me, I just tried to keep putting one foot > in front of the other. > > > > I am happy to report that I have come out of the > fog. It's too early to say > if this is the ticket or not, I'm a skeptic by > nature. Let's just say I > will never be vulnerable to the placebo effect, b/c > I'm so skeptical of > these new found cures. > > > > I'm hopeful for the first time in a long time > though. I need to thank > for his encouragement through this. > > > > Patrice > > > > _____ > > From: infections > [mailto:infections ] > On Behalf Of free2reckon > Sent: Saturday, April 16, 2005 8:24 PM > infections > Subject: [infections] Fluconazole > therapy update...FYI > > > > > I continue to be impressed with the response > borreliosis patients > are having to high dose fluconazole (200 mg / day) > therapy. Based > on patients reports of symptom relief, this stuff > really seems to > get to the borrelia in the CNS. > > What we've learned about fluconazole in the past few > months: > > Variable response to therapy in patients...some have > serious herxes > others don't. Some respond with noticable benefits > in a few days, > others take several weeks to a month. > > Those that herx initially; we've noticed that if the > patient starts > with a low dose (50 mg) and gradually increases the > dose over a few > week period to 200 mg / day, they tolerate it much > better and the > herx reactions are less severe. As always, I > encourage a > comprehensive anti-inflammatory regimen. > > Most of these patients are taking low-dose doxy or > mino along with > the fluconazole. Some are only taking fluconazole > and also doing > well. > > The duration of fluconazole therapy is still > questionable. I'm > suspicious we will end up with a 9-12 month regimen > for refractory > cases. But, this may be a true remission...similar > to what we see > with TB or leprosy. > > In any case, this is the most effective > anti-microbial for chronic > borreliosis I've seen thus far. IMO, it's a > significant > breakthrough! > > > > > > > > > > > > > _____ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 Yes and that’s a great thing since my insurance will only cover 2 Diflucan per script with a co-pay at Costco. I get it 30 pills (a months supply) for $44.95. Patrice From: infections [mailto:infections ] On Behalf Of jim davis Sent: Saturday, April 16, 2005 11:04 PM infections Subject: RE: [infections] Fluconazole therapy update...FYI One good thing, diflucan is off patent in the US. And Cosco in phoenix was selling 200mg fluconazole (Taro brand from Israel) for about 1.30 USD per pill, but I also noticed some places still have a high price. --- Patrice <PKR527@...> wrote: > I would like to add more input to 's note about > using Fluconazole 200mg > daily. I am one of the patients undergoing this > treatment & am under the > care of a Physician that corresponds > frequently with. > > > > I tested highly positive for borellia via Igenex > testing. The mainstream > doctors tell me I have lupus/scleroderma overlap > syndrome. I'm still not > sure what I have. Someone's right & someone's > wrong. The fact that my > IGENEX test was positive is not convincing to me > that I'm conclusive for > borrelia b/c it's my understanding that some of the > weird antibodies I have > might cross react with the bands causing a false > positive. > > > > I am on day 60 of Fluconazole 200mg a day. I didn't > take babysteps. I > jumped right in with the full dose in addition to > 200mg of Minocin daily. > > > > I have to say, the 1st three weeks I was a lot more > fatigued than normal. > The fatigue is sometimes hard to gauge b/c it is my > worse enemy, so I didn't > know if it was a consequence of the Fluconazole or > not. It was pretty > powerful though. Because of sheer will & the fact > that I have young kids > that need me, I just tried to keep putting one foot > in front of the other. > > > > I am happy to report that I have come out of the > fog. It's too early to say > if this is the ticket or not, I'm a skeptic by > nature. Let's just say I > will never be vulnerable to the placebo effect, b/c > I'm so skeptical of > these new found cures. > > > > I'm hopeful for the first time in a long time > though. I need to thank > for his encouragement through this. > > > > Patrice > > > > _____ > > From: infections > [mailto:infections ] > On Behalf Of free2reckon > Sent: Saturday, April 16, 2005 8:24 PM > infections > Subject: [infections] Fluconazole > therapy update...FYI > > > > > I continue to be impressed with the response > borreliosis patients > are having to high dose fluconazole (200 mg / day) > therapy. Based > on patients reports of symptom relief, this stuff > really seems to > get to the borrelia in the CNS. > > What we've learned about fluconazole in the past few > months: > > Variable response to therapy in patients...some have > serious herxes > others don't. Some respond with noticable benefits > in a few days, > others take several weeks to a month. > > Those that herx initially; we've noticed that if the > patient starts > with a low dose (50 mg) and gradually increases the > dose over a few > week period to 200 mg / day, they tolerate it much > better and the > herx reactions are less severe. As always, I > encourage a > comprehensive anti-inflammatory regimen. > > Most of these patients are taking low-dose doxy or > mino along with > the fluconazole. Some are only taking fluconazole > and also doing > well. > > The duration of fluconazole therapy is still > questionable. I'm > suspicious we will end up with a 9-12 month regimen > for refractory > cases. But, this may be a true remission...similar > to what we see > with TB or leprosy. > > In any case, this is the most effective > anti-microbial for chronic > borreliosis I've seen thus far. IMO, it's a > significant > breakthrough! > > > > > > > > > > > > > _____ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 Patrice, We would love to see a clinical study that uses the new PCR test for borrelia to monitor patients on fluconazole therapy. Similar to what Eskow has done with M meleagridis and Levaquin. That study would be very informative. > I would like to add more input to 's note about using Fluconazole 200mg > daily. I am one of the patients undergoing this treatment & am under the > care of a Physician that corresponds frequently with. > > > > I tested highly positive for borellia via Igenex testing. The mainstream > doctors tell me I have lupus/scleroderma overlap syndrome. I'm still not > sure what I have. Someone's right & someone's wrong. The fact that my > IGENEX test was positive is not convincing to me that I'm conclusive for > borrelia b/c it's my understanding that some of the weird antibodies I have > might cross react with the bands causing a false positive. > > > > I am on day 60 of Fluconazole 200mg a day. I didn't take babysteps. I > jumped right in with the full dose in addition to 200mg of Minocin daily. > > > > I have to say, the 1st three weeks I was a lot more fatigued than normal. > The fatigue is sometimes hard to gauge b/c it is my worse enemy, so I didn't > know if it was a consequence of the Fluconazole or not. It was pretty > powerful though. Because of sheer will & the fact that I have young kids > that need me, I just tried to keep putting one foot in front of the other. > > > > I am happy to report that I have come out of the fog. It's too early to say > if this is the ticket or not, I'm a skeptic by nature. Let's just say I > will never be vulnerable to the placebo effect, b/c I'm so skeptical of > these new found cures. > > > > I'm hopeful for the first time in a long time though. I need to thank > for his encouragement through this. > > > > Patrice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2005 Report Share Posted April 17, 2005 Who is the " we " ? The mysterious royal we -- . Honestly, I find this very annoying. Who is the " we " who is studying this, are they professional M.D.'s, how many are involved, how many patients, etc. If it's " I " , please say so. If it's " we " please identify. > > I would like to add more input to 's note about using > Fluconazole 200mg > > daily. I am one of the patients undergoing this treatment & am > under the > > care of a Physician that corresponds frequently with. > > > > > > > > I tested highly positive for borellia via Igenex testing. The > mainstream > > doctors tell me I have lupus/scleroderma overlap syndrome. I'm > still not > > sure what I have. Someone's right & someone's wrong. The fact > that my > > IGENEX test was positive is not convincing to me that I'm > conclusive for > > borrelia b/c it's my understanding that some of the weird > antibodies I have > > might cross react with the bands causing a false positive. > > > > > > > > I am on day 60 of Fluconazole 200mg a day. I didn't take > babysteps. I > > jumped right in with the full dose in addition to 200mg of Minocin > daily. > > > > > > > > I have to say, the 1st three weeks I was a lot more fatigued than > normal. > > The fatigue is sometimes hard to gauge b/c it is my worse enemy, > so I didn't > > know if it was a consequence of the Fluconazole or not. It was > pretty > > powerful though. Because of sheer will & the fact that I have > young kids > > that need me, I just tried to keep putting one foot in front of > the other. > > > > > > > > I am happy to report that I have come out of the fog. It's too > early to say > > if this is the ticket or not, I'm a skeptic by nature. Let's just > say I > > will never be vulnerable to the placebo effect, b/c I'm so > skeptical of > > these new found cures. > > > > > > > > I'm hopeful for the first time in a long time though. I need to > thank > > for his encouragement through this. > > > > > > > > Patrice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2005 Report Share Posted April 18, 2005 Thanx. I think its very important when making a post like that to identify how many doctors are involved (don't have to name them, can do what you just did or even less if wanted), how many people on the protocol etc. > > > I would like to add more input to 's note about using > > Fluconazole 200mg > > > daily. I am one of the patients undergoing this treatment & am > > under the > > > care of a Physician that corresponds frequently with. > > > > > > > > > > > > I tested highly positive for borellia via Igenex testing. The > > mainstream > > > doctors tell me I have lupus/scleroderma overlap syndrome. I'm > > still not > > > sure what I have. Someone's right & someone's wrong. The fact > > that my > > > IGENEX test was positive is not convincing to me that I'm > > conclusive for > > > borrelia b/c it's my understanding that some of the weird > > antibodies I have > > > might cross react with the bands causing a false positive. > > > > > > > > > > > > I am on day 60 of Fluconazole 200mg a day. I didn't take > > babysteps. I > > > jumped right in with the full dose in addition to 200mg of > Minocin > > daily. > > > > > > > > > > > > I have to say, the 1st three weeks I was a lot more fatigued than > > normal. > > > The fatigue is sometimes hard to gauge b/c it is my worse enemy, > > so I didn't > > > know if it was a consequence of the Fluconazole or not. It was > > pretty > > > powerful though. Because of sheer will & the fact that I have > > young kids > > > that need me, I just tried to keep putting one foot in front of > > the other. > > > > > > > > > > > > I am happy to report that I have come out of the fog. It's too > > early to say > > > if this is the ticket or not, I'm a skeptic by nature. Let's > just > > say I > > > will never be vulnerable to the placebo effect, b/c I'm so > > skeptical of > > > these new found cures. > > > > > > > > > > > > I'm hopeful for the first time in a long time though. I need to > > thank > > > for his encouragement through this. > > > > > > > > > > > > Patrice > > > > > > > _____ > > Quote Link to comment Share on other sites More sharing options...
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