Guest guest Posted September 12, 2001 Report Share Posted September 12, 2001 Dear a, I'm sorry to hear that you are not improving (yet) despite your IV treatment. I have only taken oral meds - 6gms Amoxi + 200mgs Doxy daily. I had one bad day following first dose then initial improvement was quite spectacular. However, I then relapsed somewhat, only to improve again & that seems to be the pattern, but overall I am much better than before treatment, although I still take pain meds, which may mask the true picture. I am sure you will eventually improve: it may be a question of time, different abx or co-infections. I hope you have had adequate testing & know precisely what you are fighting, something that is extremely difficult here in Europe. I have discovered I also have Q-fever (iella Burnetti, a Rickettsia), not that this changes much treatment-wise. I would just add that recent posts have mentioned nightmares & very real dreams; I also had these during my illness - they have now ceased. I am still trying to digest reality & realize that the twin towers I once visted, long ago in another life before illness, no longer exist. Peace & healing to you all - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2004 Report Share Posted July 21, 2004 Hi, Cngradulations Cowgirl, Reg, Steve and Helen. I hope everything keeps improving. FlashyKathy74 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 Mike, Did you mean prednisone? Prednisone is a really bad idea with Lyme. It depresses the immune system and allows the bacteria to get a foothold. According to Dr. Burrascano, ANY steroid is absolutely contraindicated. See: http://tinyurl.com/fn7am mikemassimi <mikemassimi@...> wrote: - glad to hear there is light at the end of the tunnel. I have been on Doxy now for 6 days (24 to go) and I still have this lazy, hazy feeling along with muscle pain. We think my initial exposure was in late June and I have been struggling with muscle pain since then, and eventually a bout of Bell's Palsy that prompted the blood test for Lyme. I am curious if anyone has any advice on releiving the muscle pain. Is it a build up of toxins? I have been drinking lots of water to try to flush it out. Should I stretch it? I have an appointment with an infectious disease doctor next week to discuss my treatment. My Neurologists prescribed pregnisone for the Bell's and that is clearing up. Thanks MikeM --------------------------------- See the all-new, redesigned .com. Check it out. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2006 Report Share Posted August 2, 2006 He is so right. No prednisone when you have lyme. My LLMD wrote on my notes to my PC NO NO PREDNISONE! She really looked twice at it, but got the message. At 05:07 PM 8/2/2006, you wrote: >Mike, > >Did you mean prednisone? > >Prednisone is a really bad idea with Lyme. It depresses the immune system >and allows the bacteria to get a foothold. According to Dr. Burrascano, >ANY steroid is absolutely contraindicated. > >See: <http://tinyurl.com/fn7am>http://tinyurl.com/fn7am > > > >mikemassimi <<mailto:mikemassimi%40>mikemassimi@...> wrote: >- glad to hear there is light at the end of the tunnel. I >have been on Doxy now for 6 days (24 to go) and I still have this >lazy, hazy feeling along with muscle pain. We think my initial >exposure was in late June and I have been struggling with muscle pain >since then, and eventually a bout of Bell's Palsy that prompted the >blood test for Lyme. > >I am curious if anyone has any advice on releiving the muscle pain. >Is it a build up of toxins? I have been drinking lots of water to try >to flush it out. Should I stretch it? > >I have an appointment with an infectious disease doctor next week to >discuss my treatment. My Neurologists prescribed pregnisone for the >Bell's and that is clearing up. > >Thanks > >MikeM > > >--------------------------------- >See the all-new, redesigned .com. Check it out. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Actually I am taking prednisone to treat the Bells Palsy, which is a symptom for me. So this is a tough dilemma - do I let my face contort and treat Lyme or do both and draw this out if what the report you sent is correct? I have an appointment with an infectious disease Dr after we determine today if my central nervous system is affected. MikeM --- Frick <laurafrick@...> wrote: > He is so right. No prednisone when you have lyme. > My LLMD wrote on my > notes to my PC > NO NO PREDNISONE! She really looked twice at it, > but got the message. > > > > At 05:07 PM 8/2/2006, you wrote: > > >Mike, > > > >Did you mean prednisone? > > > >Prednisone is a really bad idea with Lyme. It > depresses the immune system > >and allows the bacteria to get a foothold. > According to Dr. Burrascano, > >ANY steroid is absolutely contraindicated. > > > >See: > <http://tinyurl.com/fn7am>http://tinyurl.com/fn7am > > > > > > > >mikemassimi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 i took predisone 3 years ago and wound up in the booby hatch. of course i didnt have lyme at the time{or at least thats what they told me} ill never take that crap again! Massimi <mikemassimi@...> wrote: Actually I am taking prednisone to treat the Bells Palsy, which is a symptom for me. So this is a tough dilemma - do I let my face contort and treat Lyme or do both and draw this out if what the report you sent is correct? I have an appointment with an infectious disease Dr after we determine today if my central nervous system is affected. MikeM --- Frick <laurafrick@...> wrote: > He is so right. No prednisone when you have lyme. > My LLMD wrote on my > notes to my PC > NO NO PREDNISONE! She really looked twice at it, > but got the message. > > > > At 05:07 PM 8/2/2006, you wrote: > > >Mike, > > > >Did you mean prednisone? > > > >Prednisone is a really bad idea with Lyme. It > depresses the immune system > >and allows the bacteria to get a foothold. > According to Dr. Burrascano, > >ANY steroid is absolutely contraindicated. > > > >See: > <http://tinyurl.com/fn7am>http://tinyurl.com/fn7am > > > > > > > >mikemassimi > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Unfortunately, you will have a tough time weeding out the useful from ineffectual from dangerous when working with non-LLMDs. I would encourage you to talk to one. If you ask for a referral here, it is possible someone can direct you to one in your area. Alternatively, read, read, read, read, and get acquainted with the two standards of care and the controversy that separates them. Look at the evidence behind both approaches. The treatment guidelines paper from Dr. Burrascano is a good starting place. You are in the early stages and probably have a very good chance of a complete recovery. But if your doctor under-treats or does something to exacerbate the infection, you could easily be in it for the long haul. Good luck with your decisions. It ain't easy. --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 , Your advice to read and be informed is RIGHT ON! If we can learn everything there is to know about this disease then we will be better equipped to help our doctors help ourselves. We will know when a doctor is suggesting something that doesn't sound quite right for us or we will know when a treatment idea sounds perfect. We can be better prepared to deal with the side effects and to know when something is an emergency. Learning is the first step in getting better. The following is my starter list for reading and learning about Lyme disease. =) Robynn If you are new to Lyme disease there are a few things that you must read. The first link contains an article published in the magazine Alternative Medicine entitled Lyme Disease: The Unknown Epidemic by DJ Fletcher and Tom Klaber (May 2001). I believe the article gives a good overview of the current issues concerning this disease. http://www.mercola.com/2001/jul/25/lyme_disease.htm The second thing to read is Dr. ph Burrascano's Treatment Guidelines. http://www.ilads.org/burrascano_0905.html or use the following link to begin the download immediately: http://www.ilads.org/files/burrascano_0905.pdf Dr. Burrascano is an excellent physician and researcher. He has spoken in front of thousands of peers and a senate committee about Lyme disease. These guidelines will be very important for you to read and understand. Many doctors across the country follow these guidelines when treating their own patients. Another article that explains much of what is wrong about Lyme disease research can be found at: http://www.angelfire.com/biz/romarkaraoke/Lymetruth.html Three of the BEST books available that will explain all the complexities of Lyme disease are: Confronting Lyme Disease: What Patient Stories Teach Us by P. Yerges and Rita L. Stanley, Ph.D. Coping with Lyme Disease by Lang and Everything you Need to Know About Lyme Disease and Other Tick-Borne Disorders by Vanderhoof-Forschner I highly recommend getting at least one of these books. If you can't afford to purchase one or both of these books, please check with your local library. =) Robynn Re: [ ] improving Unfortunately, you will have a tough time weeding out the useful from ineffectual from dangerous when working with non-LLMDs. I would encourage you to talk to one. If you ask for a referral here, it is possible someone can direct you to one in your area. Alternatively, read, read, read, read, and get acquainted with the two standards of care and the controversy that separates them. Look at the evidence behind both approaches. The treatment guidelines paper from Dr. Burrascano is a good starting place. You are in the early stages and probably have a very good chance of a complete recovery. But if your doctor under-treats or does something to exacerbate the infection, you could easily be in it for the long haul. Good luck with your decisions. It ain't easy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Mike, I have never heard of taking prednisone for Bells palsy. I was given prednisone by a Dr and it CAUSED bells palsy and made my lyme disease so much worse I honestly thought I was going to die, the pain in my body was so intense and I could not walk correctly for months after I stopped the steroids. Lyme patients should never, ever take steroids. With PROPER treatment, the bells will get better. For my bells palsy, I used a tens unit twice a week, along with ice packs. It really relieved the pain and the drooping. You need to see a lyme literate Dr right away. I am afraid you are being lead down a dangerous path of treatment and healing. Because of the prednisone, my immune system is still completely shot. It ruined my recovery. > > > > >Mike, > > > > > >Did you mean prednisone? > > > > > >Prednisone is a really bad idea with Lyme. It > > depresses the immune system > > >and allows the bacteria to get a foothold. > > According to Dr. Burrascano, > > >ANY steroid is absolutely contraindicated. > > > > > >See: > > <http://tinyurl.com/fn7am>http://tinyurl.com/fn7am > > > > > > > > > > > >mikemassimi > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Amen Robynn and ! Knowledge & Research is a powerful tool....Lizzie > > , > > Your advice to read and be informed is RIGHT ON! If we can learn everything > there is to know about this disease then we will be better equipped to help > our doctors help ourselves. We will know when a doctor is suggesting > something that doesn't sound quite right for us or we will know when a > treatment idea sounds perfect. We can be better prepared to deal with the > side effects and to know when something is an emergency. Learning is the > first step in getting better. > > The following is my starter list for reading and learning about Lyme > disease. > > =) > Robynn > > If you are new to Lyme disease there are a few things that you must read. > > The first link contains an article published in the magazine Alternative > Medicine entitled Lyme Disease: The Unknown Epidemic by DJ Fletcher and Tom > Klaber (May 2001). I believe the article gives a good overview of the > current issues concerning this disease. > > http://www.mercola.com/2001/jul/25/lyme_disease.htm > > The second thing to read is Dr. ph Burrascano's Treatment Guidelines. > > http://www.ilads.org/burrascano_0905.html > > or use the following link to begin the download immediately: > > http://www.ilads.org/files/burrascano_0905.pdf > > Dr. Burrascano is an excellent physician and researcher. He has spoken in > front of thousands of peers and a senate committee about Lyme disease. > These guidelines will be very important for you to read and understand. > Many doctors across the country follow these guidelines when treating their > own patients. > > Another article that explains much of what is wrong about Lyme disease > research can be found at: > http://www.angelfire.com/biz/romarkaraoke/Lymetruth.html > > Three of the BEST books available that will explain all the complexities of > Lyme disease are: > > Confronting Lyme Disease: What Patient Stories Teach Us by P. Yerges > and Rita L. Stanley, Ph.D. > > Coping with Lyme Disease by Lang and > > Everything you Need to Know About Lyme Disease and Other Tick-Borne > Disorders by Vanderhoof-Forschner > > > I highly recommend getting at least one of these books. If you can't afford > to purchase one or both of these books, please check with your local > library. > > =) > Robynn > > Re: [ ] improving > > > Unfortunately, you will have a tough time weeding out the useful from > ineffectual from dangerous when working with non-LLMDs. I would encourage > you to talk to one. If you ask for a referral here, it is possible someone > can direct you to one in your area. Alternatively, read, read, read, read, > and get acquainted with the two standards of care and the controversy that > separates them. Look at the evidence behind both approaches. The treatment > guidelines paper from Dr. Burrascano is a good starting place. > > You are in the early stages and probably have a very good chance of a > complete recovery. But if your doctor under-treats or does something to > exacerbate the infection, you could easily be in it for the long haul. > > Good luck with your decisions. It ain't easy. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2006 Report Share Posted August 4, 2006 This is a good discussion, and I will take the advice on contacting a LLMD regarding a second opinion. Any recommendationd for an LLMD in Massachuesetts, hopedully north of Boston? Thanks MikeM > > Unfortunately, you will have a tough time weeding out the useful from ineffectual from dangerous when working with non-LLMDs. I would encourage you to talk to one. If you ask for a referral here, it is possible someone can direct you to one in your area. Alternatively, read, read, read, read, and get acquainted with the two standards of care and the controversy that separates them. Look at the evidence behind both approaches. The treatment guidelines paper from Dr. Burrascano is a good starting place. > > You are in the early stages and probably have a very good chance of a complete recovery. But if your doctor under-treats or does something to exacerbate the infection, you could easily be in it for the long haul. > > Good luck with your decisions. It ain't easy. > > > > > --------------------------------- > How low will we go? Check out Messenger's low PC-to-Phone call rates. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2006 Report Share Posted August 13, 2006 Gotta agree with Edie. Based on symptoms over the years, I think I was probably first infected with Lyme when I was 8 years old. I did well over the years, and was considered very healthy over all, with mild bouts of fatigue, a loss of math skills, some arthritis, chronic sore throats, rashes... but honestly, over all I felt well and had plenty of energy. Then 5 years ago I had 4 wisdom teeth removed under general anesthesia, and they put dexamethasone in the IV. The incompetent boob of an oral surgeon broke my jaw (long story of how he refused to x-ray and left me holding it together with my hand for 5 days), so I had an additional surgery 5 days later where it was put together with plates and screws - more dexamethasone in the IV. Immediately after that, the Lyme took over. I'd have lightening bolt sensations through the head that knocked me off my feet, followed immediately by a head to toe hot flash with my skin cramping, and me barely able to take a breath. Vision changes, mood swings, crushing fatigue, anger... Menopause, I was told. Anyway, not to get into the whole thing, but I think my body was doing a darn good job with the Lyme until I was given steroids. Now, it's a battle. elr1227 <elr1227@...> wrote: I'm kinding of kicking myself right now for not following this board more closely lately. I just have a few words of advice regarding Prednisone and Bells Palsy. In August of 2000 I developed Bilateral Bells Palsy and was ultimately given Acyclovir (it was thought that I had a Herpes viral infection similar to Shingles and chickenpox) and Prednisone to treat the inflammation. Bells Palsy can be extremely painful due to the entrapment of the facial nerve in a tunnel (called a foramen) that passes through the skull directly behind your ear. This is where I had a lot of pain. In turn, I experienced cramping " charlie-horse " type pain in my cheeks. The Prednisone possibly helped with the inflammation, but medically speaking, it is a matter of debate whether the Prednisone actually helps or if the inflammation resolves on it's own. Had I for one minute thought I had Lyme during all of this and I knew what I know now regarding the use of steroids and Lyme disease, I would have steered clear. I also began having difficulty breathing and was diagnosed as having adult onset asthma, where I was treated on occassion with a Prednisone taper as well. Initially I felt better, but after a few years symptom after symptom showed up and I was eventually diagnosed with Lyme clinically. I would definitely not take any steroids today if it were suggested. Good luck to you Mike. I'm interested in knowing how you make out. Edie --------------------------------- How low will we go? Check out Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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