California US
I worked hard to try and get this in order and look up the references. I hope it is clear. If not tell me and I will try and clean it up more:
I have become seriously concerned that many people are misdiagnosed as solely having fibromyalgia when in fact their fibromyalgia is from Lyme disease. Some of the Lymies are so relieved to have a treatable condition that they want to deny it is fibromyalgia, but since it is indistinguishable from it til you make the Lyme diagnosis, I think of it as secondary fibromyalgia, secondary to Lyme. That is not the point. The point is that if you have Lyme you need to get treated with antibiotics.
Here is a website that talks about Lyme and fibromyalgia www.geocities.com/HotSpri...-intro.txt and also explains some of the ways the diagnosis of Lyme is missed by relying on testing when the testing is not good enough. Keep that in mind. There are many false negatives. We will come back to that.
Here is a site that lists symptoms of Lyme disease. www.lymetaskforce.org/N2N/Symptoms.htm Here is another list of symptoms www.lyme.org/index2.html Here is a detailed list of symptoms that is pretty comprehensive of many possible symptoms www.lymeinfo.net/LDSymptoms.pdf It has a chart spread over many pages.
To make the diagnosis of Lyme disease: Best of all find a really good Lyme literate doc. One way is to go ahead and spend $5 and ask the Lyme disease foundation www.lyme.org/index2.html to help you. I think this is a pretty reasonable fee and there are really good reasons for it-I know some of the reasons. Or try here lymediseaseassociation.or...errals.htm
The doctors that treat Lyme well have literally been harassed and persecuted. The reason is that treating long term Lyme well is sometimes very expensive. The insurance companies have fought to get these docs excluded from practicing medicine because one of the medicines they use is very expensive. At this point, it is dangerous for a doc to treat long standing Lyme well. If they are not already famous for it, they don't advertise it, and their names are guarded secrets. I've seen the evidence myself and I can show it to you. But this explains while you will be asked enough questions for someone to believe you really are concerned about being sick, not just some spy for an insurance company trying to set up a doc. It says in Conn's Current Therapy, 1997 www.geocities.com/HotSpri.../conns.txt
"The diagnosis of Lyme disease is made on clinical grounds, as no currently available test, no matter the source or type, is definitive in confirming whether an infection with Borrelia burgdorferi is present, or if so, whether the infection is responsible for the patient's symptoms." So you need to find a doc who is good enough to know clinical grounds. MOST doctors are NOT.
If you are going to start with just testing instead of a Lyme literate doc, learn about why the testing has false negatives. Go to www.thatwebspot.com/thatw...melaw.html and read about public law 1l7-116 S signed by the President in 2002. A part of the wording in that is "recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available" and "While the CDC does state that 'this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' ". Later there is a statement :", an indeterminate number of patients with late Lyme disease are simply seronegative for unknown reasons [8]. "
This is hard core scientific references to why various tests are negative in people sick with Lyme disease if you need it for your doc. www.lymeinfo.net/LDSeronegativity.pdf
Here is what Dr. B has to say about testing:
DIAGNOSING LATE DISEASE
I recommend ordering IgM and IgG western blots. Be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy.
I, Kit, recommend getting your Western blot done at Igenex. Ive done my best to look into the best Lyme labs, and I really recommend this one as the best. This is their website. www.igenex.com/ To get your test sent there it must be done in their kit, so someone, you, your doctor, or your lab must phone them at (800) 832-3200 and ask for a test kit for a western blot for Lyme disease. It will be sent where you want, to your usual lab to draw it for you, to your doctors office for them to draw it for you. Inside it there is also paper work that includes your name and address and asks for either your medicare number or you must put in a credit card number or sign a statement that you will pay. If you don't they won't run the test so look hard for that paper. Ask the lab for it, because the lab may not notice and give it to you.
Western blots are reported by showing which bands are reactive. Some are more important than others. 41KD bands appear the earliest but can cross react with other spirochetes. The 18, 23-25, 31, 34, 37, 39, 83 and the 93 bands are the most specific but appear later or may not appear at all. You need to see at least the 41 and one of the specific bands. 55, 60, 66, and 73 are nonspecific and nondiagnostic.
If you have a doc who is open and willing to learn, this is where she or he should look. www2.lymenet.org/domino/f...guidelines It is Dr. Burrascano's reference on Lyme disease, and it is wonderful that it is on line. Or you can go back to the chapter in Conn's Current Therapy from 1997 that is on line at www.geocities.com/HotSpri.../conns.txt It was written by Dr. B also. He is THE authority if you want to get better. I'm told he wrote the Canadian national protocol also but don't know where to look it up.
When I learned I had Lyme disease, I went to a conference on Lyme disese. I heard Dr.`B speak and was tremendoussly impressed with him, and saw how much respect he got from other docs. I also noticed that every doc who had Lyme disease wanted to be treated by his protocols. I thought that very telling. There were a great many speakers, it wasn't his conference or anything-he spoke very briefly near the end of the second day.
I have become seriously concerned that many people are misdiagnosed as solely having fibromyalgia when in fact their fibromyalgia is from Lyme disease. Some of the Lymies are so relieved to have a treatable condition that they want to deny it is fibromyalgia, but since it is indistinguishable from it til you make the Lyme diagnosis, I think of it as secondary fibromyalgia, secondary to Lyme. That is not the point. The point is that if you have Lyme you need to get treated with antibiotics.
Here is a website that talks about Lyme and fibromyalgia www.geocities.com/HotSpri...-intro.txt and also explains some of the ways the diagnosis of Lyme is missed by relying on testing when the testing is not good enough. Keep that in mind. There are many false negatives. We will come back to that.
Here is a site that lists symptoms of Lyme disease. www.lymetaskforce.org/N2N/Symptoms.htm Here is another list of symptoms www.lyme.org/index2.html Here is a detailed list of symptoms that is pretty comprehensive of many possible symptoms www.lymeinfo.net/LDSymptoms.pdf It has a chart spread over many pages.
To make the diagnosis of Lyme disease: Best of all find a really good Lyme literate doc. One way is to go ahead and spend $5 and ask the Lyme disease foundation www.lyme.org/index2.html to help you. I think this is a pretty reasonable fee and there are really good reasons for it-I know some of the reasons. Or try here lymediseaseassociation.or...errals.htm
The doctors that treat Lyme well have literally been harassed and persecuted. The reason is that treating long term Lyme well is sometimes very expensive. The insurance companies have fought to get these docs excluded from practicing medicine because one of the medicines they use is very expensive. At this point, it is dangerous for a doc to treat long standing Lyme well. If they are not already famous for it, they don't advertise it, and their names are guarded secrets. I've seen the evidence myself and I can show it to you. But this explains while you will be asked enough questions for someone to believe you really are concerned about being sick, not just some spy for an insurance company trying to set up a doc. It says in Conn's Current Therapy, 1997 www.geocities.com/HotSpri.../conns.txt
"The diagnosis of Lyme disease is made on clinical grounds, as no currently available test, no matter the source or type, is definitive in confirming whether an infection with Borrelia burgdorferi is present, or if so, whether the infection is responsible for the patient's symptoms." So you need to find a doc who is good enough to know clinical grounds. MOST doctors are NOT.
If you are going to start with just testing instead of a Lyme literate doc, learn about why the testing has false negatives. Go to www.thatwebspot.com/thatw...melaw.html and read about public law 1l7-116 S signed by the President in 2002. A part of the wording in that is "recognizes that the current state of laboratory testing for Lyme disease is very poor. The situation has led many people to be misdiagnosed and delayed proper treatment. The vaccine clinical trial has documented that more that one third (36 percent) of the people with Lyme disease did not test positive on the most sophisticated tests available" and "While the CDC does state that 'this surveillance case definition was developed for national reporting of Lyme disease: it is NOT appropriate for clinical diagnosis,' ". Later there is a statement :", an indeterminate number of patients with late Lyme disease are simply seronegative for unknown reasons [8]. "
This is hard core scientific references to why various tests are negative in people sick with Lyme disease if you need it for your doc. www.lymeinfo.net/LDSeronegativity.pdf
Here is what Dr. B has to say about testing:
DIAGNOSING LATE DISEASE
I recommend ordering IgM and IgG western blots. Be aware that in late disease there may be repeatedly peaking IgM's and therefore a reactive IgM may not differentiate early from late disease, but it does suggest an active infection. When late cases of LB are seronegative, 36% will transiently become seropositive at the completion of successful therapy.
I, Kit, recommend getting your Western blot done at Igenex. Ive done my best to look into the best Lyme labs, and I really recommend this one as the best. This is their website. www.igenex.com/ To get your test sent there it must be done in their kit, so someone, you, your doctor, or your lab must phone them at (800) 832-3200 and ask for a test kit for a western blot for Lyme disease. It will be sent where you want, to your usual lab to draw it for you, to your doctors office for them to draw it for you. Inside it there is also paper work that includes your name and address and asks for either your medicare number or you must put in a credit card number or sign a statement that you will pay. If you don't they won't run the test so look hard for that paper. Ask the lab for it, because the lab may not notice and give it to you.
Western blots are reported by showing which bands are reactive. Some are more important than others. 41KD bands appear the earliest but can cross react with other spirochetes. The 18, 23-25, 31, 34, 37, 39, 83 and the 93 bands are the most specific but appear later or may not appear at all. You need to see at least the 41 and one of the specific bands. 55, 60, 66, and 73 are nonspecific and nondiagnostic.
If you have a doc who is open and willing to learn, this is where she or he should look. www2.lymenet.org/domino/f...guidelines It is Dr. Burrascano's reference on Lyme disease, and it is wonderful that it is on line. Or you can go back to the chapter in Conn's Current Therapy from 1997 that is on line at www.geocities.com/HotSpri.../conns.txt It was written by Dr. B also. He is THE authority if you want to get better. I'm told he wrote the Canadian national protocol also but don't know where to look it up.
When I learned I had Lyme disease, I went to a conference on Lyme disese. I heard Dr.`B speak and was tremendoussly impressed with him, and saw how much respect he got from other docs. I also noticed that every doc who had Lyme disease wanted to be treated by his protocols. I thought that very telling. There were a great many speakers, it wasn't his conference or anything-he spoke very briefly near the end of the second day.
Mosken
USA
