Guest guest Posted June 14, 2009 Report Share Posted June 14, 2009 Gosh , I hope the others who have gone through revision will be able to guide you. Being a PRE-revision patient, I have NO info for you. But I did want to say that you are an inspiration to me as you seem to be doing remarkably well, so quickly. I have not posted in a while, but I do read often and have been following you from the beginning. I for one will really be looking forward to you future posts. I hope someone has some ideas for you..... D (RI) > > HI EVERYONEI hope those of you that went to the retreat had a great > time! I know Eve & have posted some updates on my > status and I really appreciate that. I will be sending a more full > report of my experiences since surgery last Tuesday, but right now I'm > having an issue that I'm hoping someone may have some advice for me. > (Please forgive me for being me for being a little graphic...It's > not a pretty subject, be forewarned..)I am completely constipated!! > My stomach is very descended and I feel like I'm ready to go, but > when I try, it's not productive. It's also difficult to sit there > and relax because I've had post-surgical leg pain that gets so bad when > seated. After 5 minutes, I start moving my legs around but it makes > it almost impossible to be calm on the toilet. In the hospital I > began colace and a stool stimulator, but up until I left I was just > passing a lot of gas and mucus. Once I got to the Metrolofts on > Tuesday, I've been continuing the colace and tons of water. I've > also added prunes, salads, fruits, & activia yogurt. Last night, > after many times of trying to move my bowels, I was a little successful. > However, that was the one and only time thus far, yet I've felt like > I've needed to go ALL DAY today! Besides the hemorrhoids that > have now developed , I now have another reason to be sore while > seated. I know I may sound a little unclear, hence the meds, the > culprit of this issue at ahnd, but any input or advice wouldl be so > greatly appreciated!!!I will be back in touch with more about my general > recovery so fr, but Dr.Bridwell seemed very plesed with the incision and > reslts thus far!thanks fro listenng!!!with hugs, lauren > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 is anyone suffering burning pains and severe bone pain...and my vision is so bad now i cant hardly see to type this..im not paroniod or anxious but scared i know this isnt normal...im getting so much worse with symptoms even my brain burns and my head feels real strange..lots of burning in head and spine and other places in body..hard to think straight or spell words or concentrate...or rmember things...very very very sensitive to lights and sounds and smell.. and body well i can tell the CNS is affected so many neurologcial symptoms.fingers cold and its 75degrees here today...i cant even stand to walk by the window because its so bright and my head is burning so bad...i know your supposed to have herxing...and i even stopped the antiobtiocs for a few days..and it didnt matter i still feel really ill...and can relax my body ...shaking even though im not nervous...some kind of damgae..can anyone here tell me if they are going thru these symptoms..also humming so severe which im sure i mentioned in other posts but so loud causing pain in head none of this is normal.... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Ah, brain burn. I had a lot of this in the first couple months of treatment. It meant that the antibiotics were working in the meninges and cortex -- a thought that did little to make me feel better while it was happening. Are you taking quercetin with your antibiotics? I take 1000 mg, per my LLMD. It helps quite a bit with reducing the inflammatory response to the treatment. Epsom salt baths helped the sleep. And, per our recent conversations re: sleep apnea, have you had a sleep study? If you're not sleeping well, it could create a lot of these symptoms. If you're taking B12, you may want to back off on it for a while. It will really amplify the detox process -- a good thing, unless you're in incredible pain. Also: consider painkillers. I have a big fat bottle of Vicodin that's my best friend on days like this. I also learned to distract myself with TV (if I was up for it) or listening to podcasts or books on tape (if I wasn't). Simply having something to engage my mind besides how miserable I felt made the days go by better. Finally, if it's too much to handle, consider cutting back on your dosages. Some people (me) have genetic glitches that impair our ability to clear certain drugs from our systems. Drugs are dosed on the basis of the " normal " rate at which people's bodies metabolize them. People who take " normal " doses but metabolize the drugs more slowly than expected can easily build up too much in their systems, and effectively overdose within a few days. I had to have a chat with my LLMD just last week. He wants to put me back on biaxin, which leans especially hard on the CYP3A4 pathway -- the one I'm most broken on. It very quickly poisons me to the point where I'm completely dysfunctional. Talking it through, he agreed to put me on a half dose. Since I clear it more slowly, I'll still be getting a therapeutic dose -- hopefully, without the buildup to a toxic level. These cytochrome P450 glitches are fairly common, so you might consider the possibility that you're simply getting more than your body can handle. Sara On Oct 21, 2009, at 11:17 AM, CR wrote: > is anyone suffering burning pains and severe bone pain...and my > vision is so bad now i cant hardly see to type this..im not paroniod > or anxious but scared i know this isnt normal...im getting so much > worse with symptoms even my brain burns and my head feels real > strange..lots of burning in head and spine and other places in > body..hard to think straight or spell words or concentrate...or > rmember things...very very very sensitive to lights and sounds and > smell.. and body well i can tell the CNS is affected so many > neurologcial symptoms.fingers cold and its 75degrees here today...i > cant even stand to walk by the window because its so bright and my > head is burning so bad...i know your supposed to have herxing...and > i even stopped the antiobtiocs for a few days..and it didnt matter > i still feel really ill...and can relax my body ...shaking even > though im not nervous...some kind of damgae..can anyone here tell me > if they are going thru these symptoms..also humming so severe which > im sure i mentioned in other posts but so loud causing pain in head > none of this is normal.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 the only thing that helped me with the severe bone pain was the homeopathic dr in chattanooga, tn. It went away in 12 hours. I still have stiffness but the extreme pain is gone. > > is anyone suffering burning pains and severe bone pain...and my vision is so bad now i cant hardly see to type this..im not paroniod or anxious but scared i know this isnt normal...im getting so much worse with symptoms even my brain burns and my head feels real strange..lots of burning in head and spine and other places in body..hard to think straight or spell words or concentrate...or rmember things...very very very sensitive to lights and sounds and smell.. and body well i can tell the CNS is affected so many neurologcial symptoms.fingers cold and its 75degrees here today...i cant even stand to walk by the window because its so bright and my head is burning so bad...i know your supposed to have herxing...and i even stopped the antiobtiocs for a few days..and it didnt matter i still feel really ill...and can relax my body ...shaking even though im not nervous...some kind of damgae..can anyone here tell me if they are going thru these symptoms..also humming so severe which im sure i mentioned in other posts but so loud causing pain in head none of this is normal.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 what did you use? im so sick..burning in my brain and spine..so sensitive to lights sounds smells..im scared From: jgray1025 <jgray1025@...> Subject: [ ] Re: help!!!!!! Date: Wednesday, October 21, 2009, 4:33 PM the only thing that helped me with the severe bone pain was the homeopathic dr in chattanooga, tn. It went away in 12 hours. I still have stiffness but the extreme pain is gone. > > is anyone suffering burning pains and severe bone pain...and my vision is so bad now i cant hardly see to type this..im not paroniod or anxious but scared i know this isnt normal...im getting so much worse with symptoms even my brain burns and my head feels real strange..lots of burning in head and spine and other places in body..hard to think straight or spell words or concentrate. ..or rmember things...very very very sensitive to lights and sounds and smell.. and body well i can tell the CNS is affected so many neurologcial symptoms.fingers cold and its 75degrees here today...i cant even stand to walk by the window because its so bright and my head is burning so bad...i know your supposed to have herxing...and i even stopped the antiobtiocs for a few days..and it didnt matter i still feel really ill...and can relax my body ...shaking even though im not nervous...some kind of damgae..can anyone here tell me if they are going thru these symptoms..also humming so severe which im sure i mentioned in other posts but so loud causing pain in head none of this is normal.... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 Sara...thank you for thinking of me..this is a nightmare i wished i could wake up from..so much pain...youve told me way more than any of my docs every did...thank u dear friend..you are very smart...are u a doctor? im suffering as i write this..never any relief..i know God i listening and will help me soon.. write me again if you can if you have any more info for me....do you suffer excrutiating bone pain???i do and its torutre.. > is anyone suffering burning pains and severe bone pain...and my > vision is so bad now i cant hardly see to type this..im not paroniod > or anxious but scared i know this isnt normal...im getting so much > worse with symptoms even my brain burns and my head feels real > strange..lots of burning in head and spine and other places in > body..hard to think straight or spell words or concentrate. ..or > rmember things...very very very sensitive to lights and sounds and > smell.. and body well i can tell the CNS is affected so many > neurologcial symptoms.fingers cold and its 75degrees here today...i > cant even stand to walk by the window because its so bright and my > head is burning so bad...i know your supposed to have herxing...and > i even stopped the antiobtiocs for a few days..and it didnt matter > i still feel really ill...and can relax my body ...shaking even > though im not nervous...some kind of damgae..can anyone here tell me > if they are going thru these symptoms..also humming so severe which > im sure i mentioned in other posts but so loud causing pain in head > none of this is normal.... > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 , are you around tomorrow to talk? I would be happy to call you and see if there's anything I could suggest for you. I have had a lot of what you describe and my son did as well, so I really get how scared, alone and in pain and freaked out that you are. Where are you and when would be good? Cindi Cindi Callanan, MsT, CST, BEC Re: [ ] Re: help!!!!!! what did you use? im so sick..burning in my brain and spine..so sensitive to lights sounds smells..im scared Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 My homeopathic dr uses the ASRYA test ( It was developed by one of the Ivy League schools (Harvard or Stanford). He uses high end medicines. I would try to find someone who uses this technology if you are interested. The test tells him where to start. Then he imprints the various bottles that he gives me. I take drops under my tounge. Sometimes I One of the first things I did was eliminate gluten. That helped a lot too. > > > > > > is anyone suffering burning pains and severe bone pain...and my vision is so bad now i cant hardly see to type this..im not paroniod or anxious but scared i know this isnt normal...im getting so much worse with symptoms even my brain burns and my head feels real strange..lots of burning in head and spine and other places in body..hard to think straight or spell words or concentrate. ..or rmember things...very very very sensitive to lights and sounds and smell.. and body well i can tell the CNS is affected so many neurologcial symptoms.fingers cold and its 75degrees here today...i cant even stand to walk by the window because its so bright and my head is burning so bad...i know your supposed to have herxing...and i even stopped the antiobtiocs for a few days..and it didnt matter i still feel really ill...and can relax my body ...shaking even though im not nervous...some kind of damgae..can anyone here tell me if they are going thru these symptoms..also > humming so severe which im sure i mentioned in other posts but so loud causing pain in head none of this is normal.... > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2009 Report Share Posted October 21, 2009 I think several people have told you and I will tell you also that: YES, all of these are symptoms of lyme and co-infections. I have personally had almost all of these. It is indeed very unpleasant. In particular I relate to the symptom of not being able to relax my body even when not discernably anxious. Please consult with your LLMD, but persist with your treatment, because these symptoms will get better. Try not to be scared because these symptoms can be relieved by proper treatment. The severity of your neurological symptoms does suggest the possible coinfection of Bartonella, which has made my neurological symptoms worse than run-of-the-mill lyme (if there is such a thing!). Also, Bartonella is typified by anxiety, which I do sense that you are experiencing. Perhaps your LLMD might consider an anti-anxiety med such as lorazepam to be indicated. Maureen Quote Link to comment Share on other sites More sharing options...
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