Guest guest Posted May 8, 2006 Report Share Posted May 8, 2006 Thanks Penny. I did find s file. I was looking in the wrong group. duh. penny <pennyhoule@...> wrote: I'm reposting 's request for help below (it's also in the file section). Hopefully a group discussion will yield some kind of solution for and help anyone else who may be dealing with similar issues.pennyPost by , 5/08/06I've not posted here in months. I seem to be dying. I need to cover a lot of ground. So I'm putting this in the files section, and will post a note summaring it briefly.I've had a total of 18 months continuous high dose antibiotic therapy for seropositive Lyme and three other seropositive tick borne diseases.Treatment includes oral macrolides and fluoroquinolones, IM Bicllin, and Ceftriaxone. Four months of macrolides and antimalarials. Then two momths of levaquin followed by three months of Bicillin followed by 7 months of Ceftriaxone followed by three more months of Bicillin.I stopped the Bicillin last month. I am seronegative for each of the four tick-borne infections I have been treated for, and was worsening, not improving, on antibiotics, beginning in the second half of last November. It was tachycardia, aggravated by the physical presence of a properly placed PICC, which caused the ceftraixone treatment to be terminated by order of my Lyme specialist, who felt no good would come from continuing it anyhow, in all likelihood.My pulse reached 162 and stayed there for too long, and the PICC got pulled. I still have tachycardia but not as severe or as frequent. It is, unfortunately, getting worse.Ceftriaxone treatment reversed cognitive slowing and eliminated hypersensitivity to sound and light. There may be other gains down the road, as the benefits of not having whatever pathogen was destroyed in my body, I assume it was Lyme but can't say that with certainty, you've had to autopsy my brain to be sure.All other symptoms are progressing except pain, which is currently more manageable, largely because I am too weak to move.I have visible muscle wasting from one month to the next, pointed out by three doctors in the same two month period, at the start of the year. The whole constellation of symptoms which were in my legs, weakness, neuropathy, motor and sensory nerve problems, has migrated to my upper body. This began in the fifth month of ceftriaxone treatment and is NOT a 'herx', IMO, but again, I can't prove it so I don't really know that.Anyhow, the long and the short of it is that I cannot live much longer if the following symptoms are not stopped from progressing at their current rate:Muscle atrophy Unexplained weight lossWeaknessFatigueGenerally low pulse, somewhat higher after two months of low dose synthroid, but still lower than normal 80% of the time, which can triple in less than three minutes, both in response to physical or emotional stress and at rest, in a calm state, for no apparent reason at all.BP also labile but generally in the healthy range and not shooting up to the stroke point like it was. But pulse now triples in a matter of minutes, perhaps seconds, both under physical stress but also at rest, for no reason.Because skin punch biopsies of the lesions on my legs revealed a particular type of activated T lymphocyte that is common in auto immune diagnoses but not in infectious disease (according to two doctors, the dermatologist who did the skin punch biopsy and the oncologist who is trying to save my life.My pain level is manageable primarily because I am usually too weak to move or do anything so there is no exertional stress on the body except the stresses that lack of activity itself imposes. At no point did it improve on ceftriaxone, but it's kind of a revelation that nearrly no movement, over a period of several days, actually brings the pain down as much as it does.Guys, they're gonna want to consider some immunosuppression, so I want to be damn sure this isn't the work of pathogens. I'm satisfied for now that it's not the tick-borne infections, though whatever it is probably was enabled by them or the treatments I received for them.Tony, can you give me a list of things you think I should get tested for? Specify what samples are needed, what the pathogen is, and what the lab has to do. I will pull out the stops to make it happen, and now is the right time, while my seeming to be dying has the doctors in a cooperative mood. Jaep, ditto on fungal pathogens, I need you to give me the most complete descriptions of which tests to get done as you can.Everyone invited to chime in if they have thoughts.Right now, the only things I'm positive for that we know of are symptomatic HPV, Early Antigen positive EBV but Capsid negative, and we just learned a strong positive for HHV-8, which unfortunately only occurs in 5% of controls and the rest are mostly cancer patients and people with severe chronic illness.My labs are remarkably consistent. White counts always elevated, neutrophils and lymphocytes always elevated. Doctors think auto-immune, but I can't be sure of that. Wish there were better antiviral options. Wonder what people think about acyclovir.On the possibility this is auto-immune disease triggered by chronic infection, I would take IVIG but am resistant to steroids, unless dosages are very, very low and antiviral drugs are given simultaenously. My chest x-rays are consistently clear so no one is thinking Sarcoidosis. I just had a CT scan a week ago, don't know the results but am sure I'd have been called if there was something obvious.I have high genetic risk factors for both cancer and mitochondrial disease. I was also born when my mother was nearly forty, which means that I was exposed to a different set of hormones, and inherited an older set of genes, which changes probabilities for many conditions but in particular makes mitocondrial disease more likely.I have a niece who is dying of a mitochondrial disease right now, at the age of 28. She's blind, incapable of speech, unable to control her movements, losing basic reflexes that life requires, on a feeding tube for over a decade, but is in the last stage and expected to die in the next few months.At the moment, the only pathogenic organisms we know I'm positive for are the viruses I mentioned, all risk factors for cancer and suspected of playing a role in triggering both mitochondrial and immune-mediated diseases that roughly fit my current symptom profile.A CT scan was just done, a muscle biopsy to try and confirm mitochondrial disease or rule it out is in the works, and I think they should check that biopsy for pathogens too - welcome suggestions there as to what to look for.Because of the muscle biopsy, I have taken no supplements for the last 45 days except B shots because they can corrupt the results and we're only gonna get one chance. Many MITO patients have to have repeat biopsies, I can't sustain that kind of stress and don't appear to have that much time.Three doctors, all of whom know my case well, have said they feel MITO is most likely even though statistically cancer is more common, because of my specific symptoms. No one, not my Lyme specialist and not anyone else, is looking for pathogens.So I need your help, gang, I need you Brainiacs to think about what other lines of investigation than those under way might be wise.Nothing anyone says will offend me.Thank you. New Messenger with Voice. Call regular phones from your PC and save big. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 PAul Just reading that tells me the drugs where done wrong.The fact that you keep the bugs in a state of aggrevation has worsened your situation In MY Opinion.I know your big on tickborn stuff but every drug you listed and had administered works negatively against your gram positive bacteria and the tips of people's succesfull treatments over the years alway's pointed to gram positive relief from many autoimmune problems. > > I'm reposting 's request for help below (it's also in the file > section). > > Hopefully a group discussion will yield some kind of solution for > and help anyone else who may be dealing with similar issues. > > penny > > Post by , 5/08/06 > > > I've not posted here in months. I seem to be dying. I need to cover > a lot of ground. So I'm putting this in the files section, and will > post a note summaring it briefly. > > I've had a total of 18 months continuous high dose antibiotic > therapy for seropositive Lyme and three other seropositive tick > borne diseases. > > Treatment includes oral macrolides and fluoroquinolones, IM Bicllin, > and Ceftriaxone. Four months of macrolides and antimalarials. Then > two momths of levaquin followed by three months of Bicillin followed > by 7 months of Ceftriaxone followed by three more months of Bicillin. > > I stopped the Bicillin last month. I am seronegative for each of the > four tick-borne infections I have been treated for, and was > worsening, not improving, on antibiotics, beginning in the second > half of last November. It was tachycardia, aggravated by the > physical presence of a properly placed PICC, which caused the > ceftraixone treatment to be terminated by order of my Lyme > specialist, who felt no good would come from continuing it anyhow, > in all likelihood. > > My pulse reached 162 and stayed there for too long, and the PICC got > pulled. I still have tachycardia but not as severe or as frequent. > It is, unfortunately, getting worse. > > Ceftriaxone treatment reversed cognitive slowing and eliminated > hypersensitivity to sound and light. There may be other gains down > the road, as the benefits of not having whatever pathogen was > destroyed in my body, I assume it was Lyme but can't say that with > certainty, you've had to autopsy my brain to be sure. > > All other symptoms are progressing except pain, which is currently > more manageable, largely because I am too weak to move. > > I have visible muscle wasting from one month to the next, pointed > out by three doctors in the same two month period, at the start of > the year. The whole constellation of symptoms which were in my legs, > weakness, neuropathy, motor and sensory nerve problems, has migrated > to my upper body. This began in the fifth month of ceftriaxone > treatment and is NOT a 'herx', IMO, but again, I can't prove it so I > don't really know that. > > Anyhow, the long and the short of it is that I cannot live much > longer if the following symptoms are not stopped from progressing at > their current rate: > > Muscle atrophy > Unexplained weight loss > Weakness > Fatigue > Generally low pulse, somewhat higher after two months of low dose > synthroid, but still lower than normal 80% of the time, which can > triple in less than three minutes, both in response to physical or > emotional stress and at rest, in a calm state, for no apparent > reason at all. > > BP also labile but generally in the healthy range and not shooting > up to the stroke point like it was. But pulse now triples in a > matter of minutes, perhaps seconds, both under physical stress but > also at rest, for no reason. > > Because skin punch biopsies of the lesions on my legs revealed a > particular type of activated T lymphocyte that is common in auto > immune diagnoses but not in infectious disease (according to two > doctors, the dermatologist who did the skin punch biopsy and the > oncologist who is trying to save my life. > > My pain level is manageable primarily because I am usually too weak > to move or do anything so there is no exertional stress on the body > except the stresses that lack of activity itself imposes. At no > point did it improve on ceftriaxone, but it's kind of a revelation > that nearrly no movement, over a period of several days, actually > brings the pain down as much as it does. > > Guys, they're gonna want to consider some immunosuppression, so I > want to be damn sure this isn't the work of pathogens. I'm satisfied > for now that it's not the tick-borne infections, though whatever it > is probably was enabled by them or the treatments I received for > them. > > Tony, can you give me a list of things you think I should get tested > for? Specify what samples are needed, what the pathogen is, and what > the lab has to do. I will pull out the stops to make it happen, and > now is the right time, while my seeming to be dying has the doctors > in a cooperative mood. > > Jaep, ditto on fungal pathogens, I need you to give me the most > complete descriptions of which tests to get done as you can. > > Everyone invited to chime in if they have thoughts. > > Right now, the only things I'm positive for that we know of are > symptomatic HPV, Early Antigen positive EBV but Capsid negative, and > we just learned a strong positive for HHV-8, which unfortunately > only occurs in 5% of controls and the rest are mostly cancer > patients and people with severe chronic illness. > > My labs are remarkably consistent. White counts always elevated, > neutrophils and lymphocytes always elevated. Doctors think auto- > immune, but I can't be sure of that. Wish there were better > antiviral options. Wonder what people think about acyclovir. > > On the possibility this is auto-immune disease triggered by chronic > infection, I would take IVIG but am resistant to steroids, unless > dosages are very, very low and antiviral drugs are given > simultaenously. My chest x-rays are consistently clear so no one is > thinking Sarcoidosis. I just had a CT scan a week ago, don't know > the results but am sure I'd have been called if there was something > obvious. > > I have high genetic risk factors for both cancer and mitochondrial > disease. I was also born when my mother was nearly forty, which > means that I was exposed to a different set of hormones, and > inherited an older set of genes, which changes probabilities for > many conditions but in particular makes mitocondrial disease more > likely. > > I have a niece who is dying of a mitochondrial disease right now, at > the age of 28. She's blind, incapable of speech, unable to control > her movements, losing basic reflexes that life requires, on a > feeding tube for over a decade, but is in the last stage and > expected to die in the next few months. > > At the moment, the only pathogenic organisms we know I'm positive > for are the viruses I mentioned, all risk factors for cancer and > suspected of playing a role in triggering both mitochondrial and > immune-mediated diseases that roughly fit my current symptom profile. > > A CT scan was just done, a muscle biopsy to try and confirm > mitochondrial disease or rule it out is in the works, and I think > they should check that biopsy for pathogens too - welcome > suggestions there as to what to look for. > > Because of the muscle biopsy, I have taken no supplements for the > last 45 days except B shots because they can corrupt the results and > we're only gonna get one chance. Many MITO patients have to have > repeat biopsies, I can't sustain that kind of stress and don't > appear to have that much time. > > Three doctors, all of whom know my case well, have said they feel > MITO is most likely even though statistically cancer is more common, > because of my specific symptoms. No one, not my Lyme specialist and > not anyone else, is looking for pathogens. > > So I need your help, gang, I need you Brainiacs to think about what > other lines of investigation than those under way might be wise. > > Nothing anyone says will offend me. > > Thank you. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2006 Report Share Posted May 9, 2006 Thank you. That is exactly the kind of feedback I was hoping for, this and your other post, very clear and simple and well-reasoned. I will review the need to get the tests done with doctor tomorrow. > > > > I'm reposting 's request for help below (it's also in the file > > section). > > > > Hopefully a group discussion will yield some kind of solution for > > and help anyone else who may be dealing with similar issues. > > > > penny > > > > Post by , 5/08/06 > > > > > > I've not posted here in months. I seem to be dying. I need to > cover > > a lot of ground. So I'm putting this in the files section, and > will > > post a note summaring it briefly. > > > > I've had a total of 18 months continuous high dose antibiotic > > therapy for seropositive Lyme and three other seropositive tick > > borne diseases. > > > > Treatment includes oral macrolides and fluoroquinolones, IM > Bicllin, > > and Ceftriaxone. Four months of macrolides and antimalarials. Then > > two momths of levaquin followed by three months of Bicillin > followed > > by 7 months of Ceftriaxone followed by three more months of > Bicillin. > > > > I stopped the Bicillin last month. I am seronegative for each of > the > > four tick-borne infections I have been treated for, and was > > worsening, not improving, on antibiotics, beginning in the second > > half of last November. It was tachycardia, aggravated by the > > physical presence of a properly placed PICC, which caused the > > ceftraixone treatment to be terminated by order of my Lyme > > specialist, who felt no good would come from continuing it anyhow, > > in all likelihood. > > > > My pulse reached 162 and stayed there for too long, and the PICC > got > > pulled. I still have tachycardia but not as severe or as frequent. > > It is, unfortunately, getting worse. > > > > Ceftriaxone treatment reversed cognitive slowing and eliminated > > hypersensitivity to sound and light. There may be other gains down > > the road, as the benefits of not having whatever pathogen was > > destroyed in my body, I assume it was Lyme but can't say that with > > certainty, you've had to autopsy my brain to be sure. > > > > All other symptoms are progressing except pain, which is currently > > more manageable, largely because I am too weak to move. > > > > I have visible muscle wasting from one month to the next, pointed > > out by three doctors in the same two month period, at the start of > > the year. The whole constellation of symptoms which were in my > legs, > > weakness, neuropathy, motor and sensory nerve problems, has > migrated > > to my upper body. This began in the fifth month of ceftriaxone > > treatment and is NOT a 'herx', IMO, but again, I can't prove it so > I > > don't really know that. > > > > Anyhow, the long and the short of it is that I cannot live much > > longer if the following symptoms are not stopped from progressing > at > > their current rate: > > > > Muscle atrophy > > Unexplained weight loss > > Weakness > > Fatigue > > Generally low pulse, somewhat higher after two months of low dose > > synthroid, but still lower than normal 80% of the time, which can > > triple in less than three minutes, both in response to physical or > > emotional stress and at rest, in a calm state, for no apparent > > reason at all. > > > > BP also labile but generally in the healthy range and not shooting > > up to the stroke point like it was. But pulse now triples in a > > matter of minutes, perhaps seconds, both under physical stress but > > also at rest, for no reason. > > > > Because skin punch biopsies of the lesions on my legs revealed a > > particular type of activated T lymphocyte that is common in auto > > immune diagnoses but not in infectious disease (according to two > > doctors, the dermatologist who did the skin punch biopsy and the > > oncologist who is trying to save my life. > > > > My pain level is manageable primarily because I am usually too > weak > > to move or do anything so there is no exertional stress on the > body > > except the stresses that lack of activity itself imposes. At no > > point did it improve on ceftriaxone, but it's kind of a revelation > > that nearrly no movement, over a period of several days, actually > > brings the pain down as much as it does. > > > > Guys, they're gonna want to consider some immunosuppression, so I > > want to be damn sure this isn't the work of pathogens. I'm > satisfied > > for now that it's not the tick-borne infections, though whatever > it > > is probably was enabled by them or the treatments I received for > > them. > > > > Tony, can you give me a list of things you think I should get > tested > > for? Specify what samples are needed, what the pathogen is, and > what > > the lab has to do. I will pull out the stops to make it happen, > and > > now is the right time, while my seeming to be dying has the > doctors > > in a cooperative mood. > > > > Jaep, ditto on fungal pathogens, I need you to give me the > most > > complete descriptions of which tests to get done as you can. > > > > Everyone invited to chime in if they have thoughts. > > > > Right now, the only things I'm positive for that we know of are > > symptomatic HPV, Early Antigen positive EBV but Capsid negative, > and > > we just learned a strong positive for HHV-8, which unfortunately > > only occurs in 5% of controls and the rest are mostly cancer > > patients and people with severe chronic illness. > > > > My labs are remarkably consistent. White counts always elevated, > > neutrophils and lymphocytes always elevated. Doctors think auto- > > immune, but I can't be sure of that. Wish there were better > > antiviral options. Wonder what people think about acyclovir. > > > > On the possibility this is auto-immune disease triggered by > chronic > > infection, I would take IVIG but am resistant to steroids, unless > > dosages are very, very low and antiviral drugs are given > > simultaenously. My chest x-rays are consistently clear so no one > is > > thinking Sarcoidosis. I just had a CT scan a week ago, don't know > > the results but am sure I'd have been called if there was > something > > obvious. > > > > I have high genetic risk factors for both cancer and mitochondrial > > disease. I was also born when my mother was nearly forty, which > > means that I was exposed to a different set of hormones, and > > inherited an older set of genes, which changes probabilities for > > many conditions but in particular makes mitocondrial disease more > > likely. > > > > I have a niece who is dying of a mitochondrial disease right now, > at > > the age of 28. She's blind, incapable of speech, unable to control > > her movements, losing basic reflexes that life requires, on a > > feeding tube for over a decade, but is in the last stage and > > expected to die in the next few months. > > > > At the moment, the only pathogenic organisms we know I'm positive > > for are the viruses I mentioned, all risk factors for cancer and > > suspected of playing a role in triggering both mitochondrial and > > immune-mediated diseases that roughly fit my current symptom > profile. > > > > A CT scan was just done, a muscle biopsy to try and confirm > > mitochondrial disease or rule it out is in the works, and I think > > they should check that biopsy for pathogens too - welcome > > suggestions there as to what to look for. > > > > Because of the muscle biopsy, I have taken no supplements for the > > last 45 days except B shots because they can corrupt the results > and > > we're only gonna get one chance. Many MITO patients have to have > > repeat biopsies, I can't sustain that kind of stress and don't > > appear to have that much time. > > > > Three doctors, all of whom know my case well, have said they feel > > MITO is most likely even though statistically cancer is more > common, > > because of my specific symptoms. No one, not my Lyme specialist > and > > not anyone else, is looking for pathogens. > > > > So I need your help, gang, I need you Brainiacs to think about > what > > other lines of investigation than those under way might be wise. > > > > Nothing anyone says will offend me. > > > > Thank you. > > > > > > > Quote Link to comment Share on other sites More sharing options...
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