Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Hi ,Was this kinda like a knock on the door and they tell you " Hi, we are from the government and are here to help you! " Goodness run Forest run!! Really sorry to hear you had to go through this... Before I had chronic Lyme, my wife had Chronic Lyme, she wasnot as bad as your wife is, but bad enough... And I soon found as she slipped from the acute phase to the chronic phase, I was quickly learning everything in our lives had changed, I was now taking care of her and the house as she coulddo very little... She continued to work, but one day told me when she awakens in the morning, she could either shower or make her breakfast, but not both. This coming from a very active woman before there was a drastic changeand I had to step up to the plate.. I could not image at that time getting contacted from FL DCF... You were fortunate this just went away as fast as it came.. Most folks who don't have Lyme have no clue whatit is or what it is like.. And yes, they could have removed your wife and just think what may have become of her! At least you know the level of care she needs... People who are stricken with Lyme need a lot of love and understanding.The last thing we need is the government lending a helping hand... Was this visit based on what that last doctor said to you? Sure sounds like it.I can tell you no state only has 99 documented cases of Lyme...Well let me rephrase, yes, 99 documented,but far, far more undocumented cases no doubt.. Since most doctors don't understand chronic Lyme, thus don't recognize the symptoms as Lyme, most who are chronic will never be given a proper dx!! So the numberswill always be skewed.. And your situation sparked my memory of a letter my wife wrote in 2005 to the then Florida Secretary of Health, explaining her Lyme journey and fortunately her treatment and recovery and asking him to ensure all doctors in the statewere properly trained to dx and treat Lyme... She received a very nice letter back acknowledging that Florida takes Lyme and also STARI (Southern Tick Associated Rash Illness) very seriously and about 20 cases of Lymeare reported yearly here in FL... We were floored, 20 cases!!! Interesting because at the time there were 5 LLMDs practicing in Florida!! Heck, I personally got to know 46 Lymies in Jax alone!!Chronic Lyme has been swept up under the rug for years! We had great hopes When Prez Bush " W " in 2006 announced he had Lyme that things would change, we felt for sure this was going to really bring Lyme to the forefront, but sadly, theAmerican people herd far more about his Colonoscopy several months before and practically nothing about his Lyme treatment protocol.. Here is a great comparison of " W " in 1994 as TX Gov, at that time he clearly did not have active Lyme and then as President in the 2004 Presidential debate when he obviously had Lyme. It would be yet another two years before it was announced he had Lyme... Who says you can't have Lyme and still be President.... But seriously,I don't know how he did it as many people with chronic Lyme can't even work a normal job.. So, was really president... :-) Interesting about your thinking of the director of the OK medical board being paid for his cooperation.. ... In 2006, the IDSA(Infectious Disease Society of America), their 14 member Lyme board announced that chronic Lyme does not exist! Fortunately, Blumanthal, the then AG of CT investigated the IDSA and their 14 member panel and found they had far to many conflictsof interest on their panel's recommendation that Chronic Lyme does not exist. He made them disband the panel and choose a new one.. Unfortunately, this took four years and once the new panel was selected, they agreed with the first panel.. Unfortunately for the Lyme community AG Blumanthal was then Senator Blumanthol and was no longer involved with the IDSA. I think the IDSA knew Blumanthal was eyeing for Senator and decided to wait this out until he no longer was involved.This link is most likely the most about Lyme politics brought to you by the IDSA! One can only wonder about the money that may have changed hands just before the IDSA announced their flawed guidelines.. http://www.ct.gov/ag/cwp/view.asp?a=2795 & q=414284 http://en.wikipedia.org/wiki/_Blumenthal>>> Lyme disease guidelines lawsuit In November 2006, Blumenthal launched an antitrust investigation into the Infectious Diseases Society of America's (IDSA's) 2006 guidelines regarding the treatment ofLyme disease.[57] Responding to concerns from chronic Lyme disease advocacy groups, Blumenthal claimed the IDSA guidelines would " severely constrict choices and legitimate diagnosis and treatment options for patients. " [58] In 2008, Blumenthal ended the investigation after the IDSA agreed to conduct a review of the guidelines.[59] In 2010, an eight-member independent review panel unanimously agreed that the original 2006 gudeline recommendations were " medically and scientifically justified " in the light of the evidence. The committee did not change any of the earlier recommendations but did alter some of the language in an executive summary of the findings.[60]Blumenthal said he would review the final report.[61]<<< The one thing I quickly learned about Lyme, there is the disease and then there is the politics of the disease and we just get caught in the middle! For some strange reason, W has his Lyme treatments kept very quiet, the IDSA in 2006 issues their thinking about Chronic Lyme, it does not exist and then they wait Blumanthal out until he no longer is AG of CT... The good news is Senator Blumanthal continues to fight for Lyme!!http://www.lymewarriors.com/2011/07/19/us-senator-richard-blumenthal-pushing-for-lyme-disease-bill/ For your sake, I hope those doctors did listen to you and others talking about Lyme, but I honestly would not keep my hopes on about this.. Untilthe Federal government makes a firm commitment to spending money on Lyme research, it is going to be just another political football... The good news is we can all get better just by using good proven protocols.. The politics of Lyme sadly hurt those newly stricken a lot more asdiagnoses and treatments could be in place to help them, but aren't and so many will go on to have chronic Lyme... The only thing you can keep doing is keep doing what you've been doing! Every chance I get I talk to others about Lyme and the dangers of a tick on their skin... When I feel like I am losing their interest, I always say " you are just one tick bite away from where I am!! " That always gets their attention!! Just keep telling your wife's story to others, many won't listen, but some will and you never know, one of them just may make a difference in the future of Lyme!! Take care,Jim New Lymie needs advice on rife machine Message List Reply | Delete Message #29812 of 29889 < Prev | Next > Re: Re: New Lymie needs advice on rife machine Yeah, Jim, We have seen a lot of the Lyme wars that happen out there. DHS actually was sent to our house, and imagine me, a perpetual slob, having our house examined to see if I was fit to take care of my wife. Here I am, with some dishes in the sink, some stuff lying around, thinking that if I didn't have the house clean enough, they would take my wife away from me!! And me, being the only one who ever demonstrated any concern about her!! There was a great deal of prayer being sent over that period of time. Fortunately, the person sent to the house could see the concern I had for her, and they let it drop. With just a note, I believe I could have lost her. It's mind-boggling to think about. On your other note about testing and diagnosis, here in Oklahoma, was bitten in 1994. That year there were 99 documented cases of Lyme disease in OK. Over the next few years, a new director of the OK health board decided that Lyme disease did not exist in OK. (I would love to see the financial records of this person; I would be willing to bet there were deposits from some lobbyists, or pharmaceutical co's).As a result, there were just a handful of cases accepted as documented over the next 8 years or so. Near the end of this time. I, and some others, were invited to speak to the Oklahmoa Osteopathic School of Medicine, and were able to present our personal stories of Lyme Disease. Because of this, many new doctors were exposed to the horror stories of undiagnosed Lyme Disease. And hopefully, they will remember what they heard, and diagnose some of their patients in the future. Keep up the good fight!, From: jimjax2 To: Lyme_and_Rife Sent: Tuesday, January 3, 2012 2:21 PMSubject: Re: New Lymie needs advice on rife machine Hi ,Have you ever considered if the doctor suggesting you had abused your wife had decided to contact the authorities, how a bad Lyme situation could have become drastically worse and fast!Your wife is so Lyme and hers and your situation is so common, meaning that most doctorshave no clue what chronic Lyme is and this equates to them mistreating their patients without any real intent to do so... Anyone can be ignorant about any situation, I think when a doctoris clueless as your wife's various docs are/were, they should stand aside and refer her to someone else who may be able to help or just stop talking and listen to their patients and spouses have to say. I've seen some doctors take such a strong stand as they feel they can't be wrong, and this can really be dangerous for their patients. I can honestly say early on when I had undxdgut pain, my local docs referred me to a teaching hospital, being completely honest saying they don't know everything and my chances were much greater getting help from a specialistat a teaching hospital. At least there a label was put on my pain and a dx of gut dismotility wasgiven. I don't mind going from doctor to doctor if progress is made along the way.. But in your wife's case, nothing was happening until I presume you hooked up with Dr. C in MO... He's anothervery good LLMD... Unfortunately anyone with chronic Lyme who is not treated correctly and immediately.their health worsens as they spend valuable time trying to find a doctor who can help. Just from what you've written, you and your wife clearly have been put through the chronicLyme maze... Really shameful isn't it? And this is common. You go to see a specialist for help and walk away feeling even more confused. I know these guys are busy and they can't possibly know everything, their decisions unfortunately affects their patients lives.And can you believe, today the correct Lyme testing protocol is first the ELISA, if positive, thenthe Western Blot, if it is positive, it is Lyme!! But like you say, the ELISA is mostly worthless, and the WB still can show inaccurate results... And since many doctors base their decisions as to whetherpatients have Lyme or not based on the results of these test, many unfortunately are told they don't have Lyme, the test was negative, they are sent home and will continue to worsen to the point such as your wife where Lyme has taken over the body. Not only does this affect the patient and his/her family,but it also skews the correct reporting of Lyme disease to the CDC. They show about 30,000 new cases of Lyme yearly, many in the Lyme community believes this number is up to 10 times higher... The CDC at one point even made this very same statement.. Trust in what you learn and what works!!Take care,Jim >> Bettina,> > I don't think I can offer any better advise than Jim and the others have provided, but I just wanted to let you know about our experience, so you know you're not alone. > > My wife was having a lot of neurological problems, pain, aggression, ADD, etc. At one point, she could not complete a sentence, because by the time she got from the subject to the verb, she could not remember what the object was; > > She received numerous diagnoses from MD's, but the 3 neuorologists she saw had 3 of the most interesting ones.> > The first asked why she was in a wheelchair. When told that she could not stand because of the pain, that she could not straighten her neck and back, and great fatigue, and after a few little neuorlogical tests, she was told there was " nothing wrong with her " , and she was " healthy enough to run a marathon. " > > The second asked her to stand and raise her arms. Since her pain had become so intense, for so long, she could not force her left arm away from her side. He even tried to force it up, and couldn't do it (Intense pain!). His diagnosis was " frozen shoulder " ; nothing neorological. > > The third decided that all this was from something that had happened in her past, or possibly that I was abusing her, and diagnosed her with " comversion disorder " or " conversion reaction " . He wanted to give her Sodium Amitol " (truth serum) and find out what I was doing to her. Fortunately, she's a tough chick, and did not let them do that to her. > > Later the next year, we found Dr. C in MO, who easily diagnosed her, even before her tests came back. The abx and especially the IV abx saved her life. Later, the abx stopped helping, so we had to move on to other things. That's why I'm here. The rife type technology has helped her quite a bit. > > By the way, did your son get a Western Blot test? The ELISA test is really worthless - lots of false negatives. There are a few other tests out there, including the Bowen test that might help convince your husband (and sometimes insurance companies). But the bottom line is that Lyme is diagnosed " clinically " (by symptoms) with only support from lab work. I would trust a doctor who has seen hundreds of Lyme patients more than one who has seen just a few. > > By the way, infectious disease specialists, who should be better, are some of the worst. One that saw my wife made the idiotic statement, that since she had taken some antibiotics, it was going to be impossible to tell whether she had neurological Lyme. > > Good luck with your son,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Hi, have a question for you jim, or any one else who may have an opinion. i have a 17 yr old nephew who had a tick on him several yrs ago. my sister, very much aware of my lyme life, took him to the dr and dr removed it. dr said 'this is not a tick that carries lyme. i know, i have several boys and have taken ticks off of them'. ?: how true is this statement?? this nephew has an iq of 140. he can 'ace' a school test without doing a bit of homework, can read a book in class and also contribute to the discussion. he was reading the encycopedia at preschool. so smart!! however, he is failing in school. today, they are basing much of their grades on class work and he has no motivation to do it. he will lay on his bed and stare at the ceiling. he is unmotivated to do much of anything, except music, as in marching band, piano, his love. he forgets, lathargic. his dad was a pilot in the gulf and iraq wars. one daughter has cfs (tested + for ebv, cmv, myco and chlamydia pn,--also out of country and then a councelor at camp prior to illness onset) other daughter shows some stomach problems, husband (pilot) did notice some physical differences after coming home. son could just be a teenager and all that entails. he is a good kid, and when talked to says he doesn't like how he is and doesn't know why he doesn't do anything. maybe bored with high iq. parents have tried everything. they are going to have him just 'test out' on a lot of the classes because he just won't get motivated to do homework. has anyone seen anything like this in a teenager who has had a tick found on him. is this dr right, not a tick that carries lyme? kid could just be normal for his situation, but wondering-he's not the only one in the family with some interesting symptoms. many gulf war vets 'brought it home' and now families have 'symptoms'. these are not complaining people so they never put anything together with all their symptoms until i thought about it and brought it up. or am i just paranoid for my family???? barbara Hi , Was this kinda like a knock on the door and they tell you " Hi, we are from the government and are here to help you! " Goodness run Forest run!! Really sorry to hear you had to go through this... Before I had chronic Lyme, my wife had Chronic Lyme, she was not as bad as your wife is, but bad enough... And I soon found as she slipped from the acute phase to the chronic phase, I was quickly learning everything in our lives had changed, I was now taking care of her and the house as she could do very little... She continued to work, but one day told me when she awakens in the morning, she could either shower or make her breakfast, but not both. This coming from a very active woman before there was a drastic change and I had to step up to the plate.. I could not image at that time getting contacted from FL DCF... You were fortunate this just went away as fast as it came.. Most folks who don't have Lyme have no clue what it is or what it is like.. And yes, they could have removed your wife and just think what may have become of her! At least you know the level of care she needs... People who are stricken with Lyme need a lot of love and understanding. The last thing we need is the government lending a helping hand... Was this visit based on what that last doctor said to you? Sure sounds like it. I can tell you no state only has 99 documented cases of Lyme...Well let me rephrase, yes, 99 documented, but far, far more undocumented cases no doubt.. Since most doctors don't understand chronic Lyme, thus don't recognize the symptoms as Lyme, most who are chronic will never be given a proper dx!! So the numbers will always be skewed.. And your situation sparked my memory of a letter my wife wrote in 2005 to the then Florida Secretary of Health, explaining her Lyme journey and fortunately her treatment and recovery and asking him to ensure all doctors in the state were properly trained to dx and treat Lyme... She received a very nice letter back acknowledging that Florida takes Lyme and also STARI (Southern Tick Associated Rash Illness) very seriously and about 20 cases of Lyme are reported yearly here in FL... We were floored, 20 cases!!! Interesting because at the time there were 5 LLMDs practicing in Florida!! Heck, I personally got to know 46 Lymies in Jax alone!! Chronic Lyme has been swept up under the rug for years! We had great hopes When Prez Bush " W " in 2006 announced he had Lyme that things would change, we felt for sure this was going to really bring Lyme to the forefront, but sadly, the American people herd far more about his Colonoscopy several months before and practically nothing about his Lyme treatment protocol.. Here is a great comparison of " W " in 1994 as TX Gov, at that time he clearly did not have active Lyme and then as President in the 2004 Presidential debate when he obviously had Lyme. It would be yet another two years before it was announced he had Lyme... Who says you can't have Lyme and still be President.... But seriously, I don't know how he did it as many people with chronic Lyme can't even work a normal job.. So, was really president... :-) Interesting about your thinking of the director of the OK medical board being paid for his cooperation.. ... In 2006, the IDSA (Infectious Disease Society of America), their 14 member Lyme board announced that chronic Lyme does not exist! Fortunately, Blumanthal, the then AG of CT investigated the IDSA and their 14 member panel and found they had far to many conflicts of interest on their panel's recommendation that Chronic Lyme does not exist. He made them disband the panel and choose a new one.. Unfortunately, this took four years and once the new panel was selected, they agreed with the first panel.. Unfortunately for the Lyme community AG Blumanthal was then Senator Blumanthol and was no longer involved with the IDSA. I think the IDSA knew Blumanthal was eyeing for Senator and decided to wait this out until he no longer was involved. This link is most likely the most about Lyme politics brought to you by the IDSA! One can only wonder about the money that may have changed hands just before the IDSA announced their flawed guidelines.. http://www.ct.gov/ag/cwp/view.asp?a=2795 & q=414284 http://en.wikipedia.org/wiki/_Blumenthal >>> Lyme disease guidelines lawsuit In November 2006, Blumenthal launched an antitrust investigation into the Infectious Diseases Society of America's (IDSA's) 2006 guidelines regarding the treatment ofLyme disease.[57] Responding to concerns from chronic Lyme disease advocacy groups, Blumenthal claimed the IDSA guidelines would " severely constrict choices and legitimate diagnosis and treatment options for patients. " [58] In 2008, Blumenthal ended the investigation after the IDSA agreed to conduct a review of the guidelines.[59] In 2010, an eight-member independent review panel unanimously agreed that the original 2006 gudeline recommendations were " medically and scientifically justified " in the light of the evidence. The committee did not change any of the earlier recommendations but did alter some of the language in an executive summary of the findings.[60]Blumenthal said he would review the final report.[61]<<< The one thing I quickly learned about Lyme, there is the disease and then there is the politics of the disease and we just get caught in the middle! For some strange reason, W has his Lyme treatments kept very quiet, the IDSA in 2006 issues their thinking about Chronic Lyme, it does not exist and then they wait Blumanthal out until he no longer is AG of CT... The good news is Senator Blumanthal continues to fight for Lyme!! http://www.lymewarriors.com/2011/07/19/us-senator-richard-blumenthal-pushing-for-lyme-disease-bill/ For your sake, I hope those doctors did listen to you and others talking about Lyme, but I honestly would not keep my hopes on about this.. Until the Federal government makes a firm commitment to spending money on Lyme research, it is going to be just another political football... The good news is we can all get better just by using good proven protocols.. The politics of Lyme sadly hurt those newly stricken a lot more as diagnoses and treatments could be in place to help them, but aren't and so many will go on to have chronic Lyme... The only thing you can keep doing is keep doing what you've been doing! Every chance I get I talk to others about Lyme and the dangers of a tick on their skin... When I feel like I am losing their interest, I always say " you are just one tick bite away from where I am!! " That always gets their attention!! Just keep telling your wife's story to others, many won't listen, but some will and you never know, one of them just may make a difference in the future of Lyme!! Take care, Jim New Lymie needs advice on rife machine Message List Reply | Delete Message #29812 of 29889 < Prev | Next > Re: Re: New Lymie needs advice on rife machine Yeah, Jim, We have seen a lot of the Lyme wars that happen out there. DHS actually was sent to our house, and imagine me, a perpetual slob, having our house examined to see if I was fit to take care of my wife. Here I am, with some dishes in the sink, some stuff lying around, thinking that if I didn't have the house clean enough, they would take my wife away from me!! And me, being the only one who ever demonstrated any concern about her!! There was a great deal of prayer being sent over that period of time. Fortunately, the person sent to the house could see the concern I had for her, and they let it drop. With just a note, I believe I could have lost her. It's mind-boggling to think about. On your other note about testing and diagnosis, here in Oklahoma, was bitten in 1994. That year there were 99 documented cases of Lyme disease in OK. Over the next few years, a new director of the OK health board decided that Lyme disease did not exist in OK. (I would love to see the financial records of this person; I would be willing to bet there were deposits from some lobbyists, or pharmaceutical co's).As a result, there were just a handful of cases accepted as documented over the next 8 years or so. Near the end of this time. I, and some others, were invited to speak to the Oklahmoa Osteopathic School of Medicine, and were able to present our personal stories of Lyme Disease. Because of this, many new doctors were exposed to the horror stories of undiagnosed Lyme Disease. And hopefully, they will remember what they heard, and diagnose some of their patients in the future. Keep up the good fight!, From: jimjax2 To: Lyme_and_Rife Sent: Tuesday, January 3, 2012 2:21 PMSubject: Re: New Lymie needs advice on rife machine Hi ,Have you ever considered if the doctor suggesting you had abused your wife had decided to contact the authorities, how a bad Lyme situation could have become drastically worse and fast! Your wife is so Lyme and hers and your situation is so common, meaning that most doctorshave no clue what chronic Lyme is and this equates to them mistreating their patients withoutany real intent to do so... Anyone can be ignorant about any situation, I think when a doctor is clueless as your wife's various docs are/were, they should stand aside and refer her to someone else who may be able to help or just stop talking and listen to their patients and spouseshave to say. I've seen some doctors take such a strong stand as they feel they can't be wrong, and this can really be dangerous for their patients. I can honestly say early on when I had undxdgut pain, my local docs referred me to a teaching hospital, being completely honest sayingthey don't know everything and my chances were much greater getting help from a specialist at a teaching hospital. At least there a label was put on my pain and a dx of gut dismotility wasgiven. I don't mind going from doctor to doctor if progress is made along the way.. But in your wife'scase, nothing was happening until I presume you hooked up with Dr. C in MO... He's another very good LLMD... Unfortunately anyone with chronic Lyme who is not treated correctly and immediately.their health worsens as they spend valuable time trying to find a doctor who can help.Just from what you've written, you and your wife clearly have been put through the chronic Lyme maze... Really shameful isn't it? And this is common. You go to see a specialist for help and walk away feeling even more confused. I know these guys are busy and they can't possibly know everything, their decisions unfortunately affects their patients lives.And can you believe, today the correct Lyme testing protocol is first the ELISA, if positive, thenthe Western Blot, if it is positive, it is Lyme!! But like you say, the ELISA is mostly worthless, and the WB still can show inaccurate results... And since many doctors base their decisions as to whetherpatients have Lyme or not based on the results of these test, many unfortunately are told they don't have Lyme, the test was negative, they are sent home and will continue to worsen to the point such as your wife where Lyme has taken over the body. Not only does this affect the patient and his/her family,but it also skews the correct reporting of Lyme disease to the CDC. They show about 30,000 new cases of Lyme yearly, many in the Lyme community believes this number is up to 10 times higher... The CDC at one point even made this very same statement.. Trust in what you learn and what works!!Take care,Jim >> Bettina,> > I don't think I can offer any better advise than Jim and the others have provided, but I just wanted to let you know about our experience, so you know you're not alone.> > My wife was having a lot of neurological problems, pain, aggression, ADD, etc. At one point, she could not complete a sentence, because by the time she got from the subject to the verb, she could not remember what the object was; > > She received numerous diagnoses from MD's, but the 3 neuorologists she saw had 3 of the most interesting ones.> > The first asked why she was in a wheelchair. When told that she could not stand because of the pain, that she could not straighten her neck and back, and great fatigue, and after a few little neuorlogical tests, she was told there was " nothing wrong with her " , and she was " healthy enough to run a marathon. " > > The second asked her to stand and raise her arms. Since her pain had become so intense, for so long, she could not force her left arm away from her side. He even tried to force it up, and couldn't do it (Intense pain!). His diagnosis was " frozen shoulder " ; nothing neorological. > > The third decided that all this was from something that had happened in her past, or possibly that I was abusing her, and diagnosed her with " comversion disorder " or " conversion reaction " . He wanted to give her Sodium Amitol " (truth serum) and find out what I was doing to her. Fortunately, she's a tough chick, and did not let them do that to her. > > Later the next year, we found Dr. C in MO, who easily diagnosed her, even before her tests came back. The abx and especially the IV abx saved her life. Later, the abx stopped helping, so we had to move on to other things. That's why I'm here. The rife type technology has helped her quite a bit. > > By the way, did your son get a Western Blot test? The ELISA test is really worthless - lots of false negatives. There are a few other tests out there, including the Bowen test that might help convince your husband (and sometimes insurance companies). But the bottom line is that Lyme is diagnosed " clinically " (by symptoms) with only support from lab work. I would trust a doctor who has seen hundreds of Lyme patients more than one who has seen just a few. > > By the way, infectious disease specialists, who should be better, are some of the worst. One that saw my wife made the idiotic statement, that since she had taken some antibiotics, it was going to be impossible to tell whether she had neurological Lyme. > > Good luck with your son,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Thanks for the support, Jim, And yes, it was exactly like "we're from the gov't and are here to help...." Some of the scariest words in the english language! The doctor who had done the crazy stuff in the hospital arranged for her home health. After a while we found out she had special training because she was a psyche nurse. We plan on continuing to spread the word, as the opportunities arise. The leader of the Lyme Disease Support Group in Oklahoma, Janet Segraves, is very involved in communicating with the authorities, and has gotten some of us to help her spread the word. She even arranged for a few of us to speak to the Oklahoma State Medical School students and share some of our experiences a couple of years ago. You reminded me of the fact that W had Lyme. The way I remember hearing the news, I thought it was acute - and that they had caught it immediately. Did he actually have chronic Lyme? Keep spreading the word, To: Lyme and Rife Group Jim! <Lyme_and_Rife > Sent: Thursday, January 5, 2012 7:52 PMSubject: Re: The politics of Lyme (was) New Lymie needs advice on rife machine Hi , Was this kinda like a knock on the door and they tell you "Hi, we are from the government and are here to help you!" Goodness run Forest run!! Really sorry to hear you had to go through this... Before I had chronic Lyme, my wife had Chronic Lyme, she was not as bad as your wife is, but bad enough... And I soon found as she slipped from the acute phase to the chronic phase, I was quickly learning everything in our lives had changed, I was now taking care of her and the house as she could do very little... She continued to work, but one day told me when she awakens in the morning, she could either shower or make her breakfast, but not both. This coming from a very active woman before there was a drastic change and I had to step up to the plate.. I could not image at that time getting contacted from FL DCF... You were fortunate this just went away as fast as it came.. Most folks who don't have Lyme have no clue what it is or what it is like.. And yes, they could have removed your wife and just think what may have become of her! At least you know the level of care she needs... People who are stricken with Lyme need a lot of love and understanding. The last thing we need is the government lending a helping hand... Was this visit based on what that last doctor said to you? Sure sounds like it. I can tell you no state only has 99 documented cases of Lyme...Well let me rephrase, yes, 99 documented, but far, far more undocumented cases no doubt.. Since most doctors don't understand chronic Lyme, thus don't recognize the symptoms as Lyme, most who are chronic will never be given a proper dx!! So the numbers will always be skewed.. And your situation sparked my memory of a letter my wife wrote in 2005 to the then Florida Secretary of Health, explaining her Lyme journey and fortunately her treatment and recovery and asking him to ensure all doctors in the state were properly trained to dx and treat Lyme... She received a very nice letter back acknowledging that Florida takes Lyme and also STARI (Southern Tick Associated Rash Illness) very seriously and about 20 cases of Lyme are reported yearly here in FL... We were floored, 20 cases!!! Interesting because at the time there were 5 LLMDs practicing in Florida!! Heck, I personally got to know 46 Lymies in Jax alone!! Chronic Lyme has been swept up under the rug for years! We had great hopes When Prez Bush "W" in 2006 announced he had Lyme that things would change, we felt for sure this was going to really bring Lyme to the forefront, but sadly, the American people herd far more about his Colonoscopy several months before and practically nothing about his Lyme treatment protocol.. Here is a great comparison of "W" in 1994 as TX Gov, at that time he clearly did not have active Lyme and then as President in the 2004 Presidential debate when he obviously had Lyme. It would be yet another two years before it was announced he had Lyme... Who says you can't have Lyme and still be President.... But seriously, I don't know how he did it as many people with chronic Lyme can't even work a normal job.. So, was really president... :-) Interesting about your thinking of the director of the OK medical board being paid for his cooperation.. ... In 2006, the IDSA (Infectious Disease Society of America), their 14 member Lyme board announced that chronic Lyme does not exist! Fortunately, Blumanthal, the then AG of CT investigated the IDSA and their 14 member panel and found they had far to many conflicts of interest on their panel's recommendation that Chronic Lyme does not exist. He made them disband the panel and choose a new one.. Unfortunately, this took four years and once the new panel was selected, they agreed with the first panel.. Unfortunately for the Lyme community AG Blumanthal was then Senator Blumanthol and was no longer involved with the IDSA. I think the IDSA knew Blumanthal was eyeing for Senator and decided to wait this out until he no longer was involved. This link is most likely the most about Lyme politics brought to you by the IDSA! One can only wonder about the money that may have changed hands just before the IDSA announced their flawed guidelines.. http://www.ct.gov/ag/cwp/view.asp?a=2795 & q=414284 http://en.wikipedia.org/wiki/_Blumenthal >>> Lyme disease guidelines lawsuit In November 2006, Blumenthal launched an antitrust investigation into the Infectious Diseases Society of America's (IDSA's) 2006 guidelines regarding the treatment ofLyme disease.[57] Responding to concerns from chronic Lyme disease advocacy groups, Blumenthal claimed the IDSA guidelines would "severely constrict choices and legitimate diagnosis and treatment options for patients."[58] In 2008, Blumenthal ended the investigation after the IDSA agreed to conduct a review of the guidelines.[59] In 2010, an eight-member independent review panel unanimously agreed that the original 2006 gudeline recommendations were "medically and scientifically justified" in the light of the evidence. The committee did not change any of the earlier recommendations but did alter some of the language in an executive summary of the findings.[60]Blumenthal said he would review the final report.[61]<<< The one thing I quickly learned about Lyme, there is the disease and then there is the politics of the disease and we just get caught in the middle! For some strange reason, W has his Lyme treatments kept very quiet, the IDSA in 2006 issues their thinking about Chronic Lyme, it does not exist and then they wait Blumanthal out until he no longer is AG of CT... The good news is Senator Blumanthal continues to fight for Lyme!! http://www.lymewarriors.com/2011/07/19/us-senator-richard-blumenthal-pushing-for-lyme-disease-bill/ For your sake, I hope those doctors did listen to you and others talking about Lyme, but I honestly would not keep my hopes on about this.. Until the Federal government makes a firm commitment to spending money on Lyme research, it is going to be just another political football... The good news is we can all get better just by using good proven protocols.. The politics of Lyme sadly hurt those newly stricken a lot more as diagnoses and treatments could be in place to help them, but aren't and so many will go on to have chronic Lyme... The only thing you can keep doing is keep doing what you've been doing! Every chance I get I talk to others about Lyme and the dangers of a tick on their skin... When I feel like I am losing their interest, I always say "you are just one tick bite away from where I am!!" That always gets their attention!! Just keep telling your wife's story to others, many won't listen, but some will and you never know, one of them just may make a difference in the future of Lyme!! Take care, Jim New Lymie needs advice on rife machine Message List Reply | Delete Message #29812 of 29889 < Prev | Next > Re: Re: New Lymie needs advice on rife machine Yeah, Jim, We have seen a lot of the Lyme wars that happen out there. DHS actually was sent to our house, and imagine me, a perpetual slob, having our house examined to see if I was fit to take care of my wife. Here I am, with some dishes in the sink, some stuff lying around, thinking that if I didn't have the house clean enough, they would take my wife away from me!! And me, being the only one who ever demonstrated any concern about her!! There was a great deal of prayer being sent over that period of time. Fortunately, the person sent to the house could see the concern I had for her, and they let it drop. With just a note, I believe I could have lost her. It's mind-boggling to think about. On your other note about testing and diagnosis, here in Oklahoma, was bitten in 1994. That year there were 99 documented cases of Lyme disease in OK. Over the next few years, a new director of the OK health board decided that Lyme disease did not exist in OK. (I would love to see the financial records of this person; I would be willing to bet there were deposits from some lobbyists, or pharmaceutical co's).As a result, there were just a handful of cases accepted as documented over the next 8 years or so. Near the end of this time. I, and some others, were invited to speak to the Oklahmoa Osteopathic School of Medicine, and were able to present our personal stories of Lyme Disease. Because of this, many new doctors were exposed to the horror stories of undiagnosed Lyme Disease. And hopefully, they will remember what they heard, and diagnose some of their patients in the future. Keep up the good fight!, To: Lyme_and_Rife Sent: Tuesday, January 3, 2012 2:21 PMSubject: Re: New Lymie needs advice on rife machine Hi ,Have you ever considered if the doctor suggesting you had abused your wife had decided to contact the authorities, how a bad Lyme situation could have become drastically worse and fast!Your wife is so Lyme and hers and your situation is so common, meaning that most doctorshave no clue what chronic Lyme is and this equates to them mistreating their patients withoutany real intent to do so... Anyone can be ignorant about any situation, I think when a doctoris clueless as your wife's various docs are/were, they should stand aside and refer her to someone else who may be able to help or just stop talking and listen to their patients and spouseshave to say. I've seen some doctors take such a strong stand as they feel they can't be wrong, and this can really be dangerous for their patients. I can honestly say early on when I had undxdgut pain, my local docs referred me to a teaching hospital, being completely honest sayingthey don't know everything and my chances were much greater getting help from a specialistat a teaching hospital. At least there a label was put on my pain and a dx of gut dismotility wasgiven. I don't mind going from doctor to doctor if progress is made along the way.. But in your wife'scase, nothing was happening until I presume you hooked up with Dr. C in MO... He's anothervery good LLMD... Unfortunately anyone with chronic Lyme who is not treated correctly and immediately.their health worsens as they spend valuable time trying to find a doctor who can help.Just from what you've written, you and your wife clearly have been put through the chronicLyme maze... Really shameful isn't it? And this is common. You go to see a specialist for help and walk away feeling even more confused. I know these guys are busy and they can't possibly know everything, theirdecisions unfortunately affects their patients lives.And can you believe, today the correct Lyme testing protocol is first the ELISA, if positive, thenthe Western Blot, if it is positive, it is Lyme!! But like you say, the ELISA is mostly worthless, andthe WB still can show inaccurate results... And since many doctors base their decisions as to whetherpatients have Lyme or not based on the results of these test, many unfortunately are told they don't have Lyme, the test was negative, they are sent home and will continue to worsen to the point such asyour wife where Lyme has taken over the body. Not only does this affect the patient and his/her family,but it also skews the correct reporting of Lyme disease to the CDC. They show about 30,000 new cases of Lyme yearly, many in the Lyme community believes this number is up to 10 times higher... The CDC at one point even made this very same statement.. Trust in what you learn and what works!!Take care,Jim>> Bettina,> > I don't think I can offer any better advise than Jim and the others have provided, but I just wanted to let you know about our experience, so you know you're not alone.> > My wife was having a lot of neurological problems, pain, aggression, ADD, etc. At one point, she could not complete a sentence, because by the time she got from the subject to the verb, she could not remember what the object was; > > She received numerous diagnoses from MD's, but the 3 neuorologists she saw had 3 of the most interesting ones.> > The first asked why she was in a wheelchair. When told that she could not stand because of the pain, that she could not straighten her neck and back, and great fatigue, and after a few little neuorlogical tests, she was told there was "nothing wrong with her", and she was "healthy enough to run a marathon."> > The second asked her to stand and raise her arms. Since her pain had become so intense, for so long, she could not force her left arm away from her side. He even tried to force it up, and couldn't do it (Intense pain!). His diagnosis was "frozen shoulder"; nothing neorological.> > The third decided that all this was from something that had happened in her past, or possibly that I was abusing her, and diagnosed her with "comversion disorder" or "conversion reaction". He wanted to give her Sodium Amitol" (truth serum) and find out what I was doing to her. Fortunately, she's a tough chick, and did not let them do that to her.> > Later the next year, we found Dr. C in MO, who easily diagnosed her, even before her tests came back. The abx and especially the IV abx saved her life. Later, the abx stopped helping, so we had to move on to other things. That's why I'm here. The rife type technology has helped her quite a bit.> > By the way, did your son get a Western Blot test? The ELISA test is really worthless - lots of false negatives. There are a few other tests out there, including the Bowen test that might help convince your husband (and sometimes insurance companies). But the bottom line is that Lyme is diagnosed "clinically" (by symptoms) with only support from lab work. I would trust a doctor who has seen hundreds of Lyme patients more than one who has seen just a few.> > By the way, infectious disease specialists, who should be better, are some of the worst. One that saw my wife made the idiotic statement, that since she had taken some antibiotics, it was going to be impossible to tell whether she had neurological Lyme.> > Good luck with your son,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Barbara...Either we are both paranoid in our thinking (joke) or we are on the same wavelength! I have learned a lot from my son being ill and treated (homeoapthically) and from my own journey. Whether we like it or not our genes are being damaged and continually passed down to the next in line...and the horrible path continues. Their have been many articles regarding antibiotic use and the damage we pass to our children. http://www.gaia-health.com/articles501/000520-gut-bacteria-antibiotic.shtml#.TwZ\ fI2FJZ30 Women especially pass many things to our unborn children. My son is clearing the extreme amounts of " pictocin " and other drugs that I had before and during birth...WOW! Want to talk about behaviors and issues from that clearing! I also know of many children that were highly impacted by measles and the MMR vaccine but yet never received the shot themselves but when " cleared " and provoked with homeopathy have very clear reactions and improvements. If it were me...I wouldn't trust what the doctor says.....many do not even know much about lyme and/or how to even diagnose it. I have been sick with many ailments since the age of 2 with no one knowing what was causing or creating my issues. Funny now at age 37 I'm diagnosed with lyme and 2 coinfections but not from a doc, but a holistic practicionar. If it weren't for that and their treatment I probably would not be typing now. I spent 6 months chasing docs and ER's with barely a BP that plain didn't know what was wrong and truly didn't care. If It were me I would look into some holistic or alternative/natural docs that are either both Lyme literate and up to speed on vaccine damage. Clearing the vaccines gave my son speech...and the ability to assimilate some nutrients to grow! The center my son is treated at see many children affected by the vaccines from their parents and especially " gulf war syndrome " affect from dad...and strong military backgrounds because of the mirad of vaccines that they have received. I could go on and on and on...but I will spare you Sorry that this is long and rambled but that's my 2 cents worth! I would keep an open mind with his symptoms for sure! Jodie L. > > > > > > Bettina, > > > > > > I don't think I can offer any better advise than Jim and the others have > > provided, but I just wanted to let you know about our experience, so you > > know you're not alone. > > > > > > My wife was having a lot of neurological problems, pain, aggression, > > ADD, etc. At one point, she could not complete a sentence, because by the > > time she got from the subject to the verb, she could not remember what the > > object was; > > > > > > She received numerous diagnoses from MD's, but the 3 neuorologists she > > saw had 3 of the most interesting ones. > > > > > > The first asked why she was in a wheelchair. When told that she could > > not stand because of the pain, that she could not straighten her neck and > > back, and great fatigue, and after a few little neuorlogical tests, she was > > told there was " nothing wrong with her " , and she was " healthy enough to run > > a marathon. " > > > > > > The second asked her to stand and raise her arms. Since her pain had > > become so intense, for so long, she could not force her left arm away from > > her side. He even tried to force it up, and couldn't do it (Intense pain!). > > His diagnosis was " frozen shoulder " ; nothing neorological. > > > > > > The third decided that all this was from something that had happened in > > her past, or possibly that I was abusing her, and diagnosed her with > > " comversion disorder " or " conversion reaction " . He wanted to give her > > Sodium Amitol " (truth serum) and find out what I was doing to her. > > Fortunately, she's a tough chick, and did not let them do that to her. > > > > > > Later the next year, we found Dr. C in MO, who easily diagnosed her, > > even before her tests came back. The abx and especially the IV abx saved > > her life. Later, the abx stopped helping, so we had to move on to other > > things. That's why I'm here. The rife type technology has helped her quite > > a bit. > > > > > > By the way, did your son get a Western Blot test? The ELISA test is > > really worthless - lots of false negatives. There are a few other tests out > > there, including the Bowen test that might help convince your husband (and > > sometimes insurance companies). But the bottom line is that Lyme is > > diagnosed " clinically " (by symptoms) with only support from lab work. I > > would trust a doctor who has seen hundreds of Lyme patients more than one > > who has seen just a few. > > > > > > By the way, infectious disease specialists, who should be better, are > > some of the worst. One that saw my wife made the idiotic statement, that > > since she had taken some antibiotics, it was going to be impossible to tell > > whether she had neurological Lyme. > > > > > > Good luck with your son, > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2012 Report Share Posted January 6, 2012 Jodie, i'm with you on all this. my sis has come a long ways, and i have bugged her a lot over the tick, and other stuff i mentioned. they have made some changes in diet etc. but because of my history, much of what i say sometimes sounds 'one size fits all' so i get 'thanks' many times. don't get me wrong, she is opening up, but they were retired military and they are often, how shall i explain it, more easily and tend to conform to traditional 'stuff.' military are used to following traditon, but they are gradually breaking away. takes time. but i wanted to hear comments about the tick and if anyone else sees these signs in teens, even though they sound normal. it's hard to determine what is what with teens. and with his iq,he comes from a special breed. i agree with you though, and will look for an opportunity to present what you said. can't over play my hand or will lose credibility. how sad. but my family does see me as a health fanatic in some ways. i guess others feel that way until they go through the maze like we have. my husband, even though he has watched it, sometimes questions my 'health reality' shall we call it. i mentioned about neuro lyme the other day and he said, 'now you think you have neuro lyme?' had to explain it is still lyme, just gone to my head and neurological system. his joints are all degenerating, just had knee replacement, and still won't 'really' acknowledge lyme and bart, yet herxed for bart with rifampan. denial?? i finally realized i can't fix him, his life. i'm taking care of myself. he is very good for me, as well as him, taking care of me, but he won't deal with his. but not much i can do. i ramble too. to a fault, so good to talk to someone else who does. always been that way--but it's not the lyme (for once a symptom not related), it's just me. barbara Barbara...Either we are both paranoid in our thinking (joke) or we are on the same wavelength! I have learned a lot from my son being ill and treated (homeoapthically) and from my own journey. Whether we like it or not our genes are being damaged and continually passed down to the next in line...and the horrible path continues. Their have been many articles regarding antibiotic use and the damage we pass to our children. http://www.gaia-health.com/articles501/000520-gut-bacteria-antibiotic.shtml#.TwZfI2FJZ30 Women especially pass many things to our unborn children. My son is clearing the extreme amounts of " pictocin " and other drugs that I had before and during birth...WOW! Want to talk about behaviors and issues from that clearing! I also know of many children that were highly impacted by measles and the MMR vaccine but yet never received the shot themselves but when " cleared " and provoked with homeopathy have very clear reactions and improvements. If it were me...I wouldn't trust what the doctor says.....many do not even know much about lyme and/or how to even diagnose it. I have been sick with many ailments since the age of 2 with no one knowing what was causing or creating my issues. Funny now at age 37 I'm diagnosed with lyme and 2 coinfections but not from a doc, but a holistic practicionar. If it weren't for that and their treatment I probably would not be typing now. I spent 6 months chasing docs and ER's with barely a BP that plain didn't know what was wrong and truly didn't care. If It were me I would look into some holistic or alternative/natural docs that are either both Lyme literate and up to speed on vaccine damage. Clearing the vaccines gave my son speech...and the ability to assimilate some nutrients to grow! The center my son is treated at see many children affected by the vaccines from their parents and especially " gulf war syndrome " affect from dad...and strong military backgrounds because of the mirad of vaccines that they have received. I could go on and on and on...but I will spare you Sorry that this is long and rambled but that's my 2 cents worth! I would keep an open mind with his symptoms for sure!Jodie L. > > >> > > Bettina,> > >> > > I don't think I can offer any better advise than Jim and the others have > > provided, but I just wanted to let you know about our experience, so you> > know you're not alone.> > >> > > My wife was having a lot of neurological problems, pain, aggression, > > ADD, etc. At one point, she could not complete a sentence, because by the> > time she got from the subject to the verb, she could not remember what the> > object was;> > >> > > She received numerous diagnoses from MD's, but the 3 neuorologists she > > saw had 3 of the most interesting ones.> > >> > > The first asked why she was in a wheelchair. When told that she could> > not stand because of the pain, that she could not straighten her neck and > > back, and great fatigue, and after a few little neuorlogical tests, she was> > told there was " nothing wrong with her " , and she was " healthy enough to run> > a marathon. " > > >> > > The second asked her to stand and raise her arms. Since her pain had> > become so intense, for so long, she could not force her left arm away from> > her side. He even tried to force it up, and couldn't do it (Intense pain!). > > His diagnosis was " frozen shoulder " ; nothing neorological.> > >> > > The third decided that all this was from something that had happened in> > her past, or possibly that I was abusing her, and diagnosed her with > > " comversion disorder " or " conversion reaction " . He wanted to give her> > Sodium Amitol " (truth serum) and find out what I was doing to her.> > Fortunately, she's a tough chick, and did not let them do that to her. > > >> > > Later the next year, we found Dr. C in MO, who easily diagnosed her,> > even before her tests came back. The abx and especially the IV abx saved> > her life. Later, the abx stopped helping, so we had to move on to other > > things. That's why I'm here. The rife type technology has helped her quite> > a bit.> > >> > > By the way, did your son get a Western Blot test? The ELISA test is> > really worthless - lots of false negatives. There are a few other tests out > > there, including the Bowen test that might help convince your husband (and> > sometimes insurance companies). But the bottom line is that Lyme is> > diagnosed " clinically " (by symptoms) with only support from lab work. I > > would trust a doctor who has seen hundreds of Lyme patients more than one> > who has seen just a few.> > >> > > By the way, infectious disease specialists, who should be better, are > > some of the worst. One that saw my wife made the idiotic statement, that> > since she had taken some antibiotics, it was going to be impossible to tell> > whether she had neurological Lyme. > > >> > > Good luck with your son,> > > > > >> >> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Hi , Good you are speaking to med students! If they learn about Lyme in med school, they will go into the communities knowing how to at least dx it and hopefully treat it.. Big memory lapse here, but some doctor I met in my more recent past knew all about Lyme, he was young and told us he'd actually learned about it in med school.. The difference this made! This was a doctor who at least could recognize the symptoms and dx the disease instead of sending the patient home with a different dx or none at all.. So any chance you get to speak to med students is really going to help others once they become doctors.. The BIG problem with Lyme, the disease is not taught in med schools, or if it is, not in much depth.. Take care, Jim >> Bettina,>  > I don't think I can offer any better > advise than Jim and the others have provided, but I just wanted to let you know about our experience, so you know you're not alone.>  > My wife was having a lot of neurological problems, pain, aggression, ADD, etc. At one point, she could not complete a sentence, because by the time she got from the subject to the verb, she could not remember what the object was; >  > She received numerous diagnoses from MD's, but the 3 neuorologists she saw had 3 of the most interesting ones.>  > The first asked why she was in a wheelchair. When told that she could not stand because of the pain, that she could not straighten her neck and back, and great fatigue, and after a few little neuorlogical tests, she was told there was " nothing wrong with her " , and she was " healthy enough to run a marathon. " >  > The second asked her to stand and raise her arms. Since her pain had become so intense, for so long, she could not force her left arm away from her side. He even > tried to force it up, and couldn't do it (Intense pain!). His diagnosis was " frozen shoulder " ; nothing neorological.>  > The third decided that all this was from something that had happened in her past, or possibly that I was abusing her, and diagnosed her with " comversion disorder " or " conversion reaction " . He wanted to give her Sodium Amitol " (truth serum) and find out what I was doing to her. Fortunately, she's a tough chick, and did not let them do that to her.>  > Later the next year, we found Dr. C in MO, who easily diagnosed her, even before her tests came back. The abx and especially the IV abx saved her life. Later, the abx stopped helping, so we had to move on to other things. That's why I'm here. The rife type technology has helped her quite a bit.>  > By the way, did your son get a Western Blot test? The ELISA test is really worthless - lots of false negatives. There are a few other tests out there, including the Bowen test that might > help convince your husband (and sometimes insurance companies). But the bottom line is that Lyme is diagnosed " clinically " (by symptoms) with only support from lab work. I would trust a doctor who has seen hundreds of Lyme patients more than one who has seen just a few.>  > By the way, infectious disease specialists, who should be better, are some of the worst. One that saw my wife made the idiotic statement, that since she had taken some antibiotics, it was going to be impossible to tell whether she had neurological Lyme.>  > Good luck with your son,> > > Quote Link to comment Share on other sites More sharing options...
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