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DIAGNOSED WITH LYME!!
Hi, All,
After years of inquiry, I FINALLY got diagnosed - with Lyme. My deepest gratitude to Quix for suggesting I continue to pursue this route (even though I had done so 2 years ago to no avail and had therefore given up on Lyme inquiry). I am posting this to you MSers because it is of vital importance to you since many MS patients have been found to also be positive for Lyme.
Two years ago because of a positive Lyme test, I had been referred by my very concerned primary care physician to an infectious disease doctor. That idiot Infectious Disease doctor just sat across the room and coldly informed me that I "could not possibly have Lyme disease because chronic Lyme disease does not exist." Yep, that's the lie he handed me and I believed him because back then I thought all doctors were knowledgeable and truthful. My eyes had not yet been opened. And he was able to lie to me with impunity because our national policy/statement on Lyme (written by a team of infectious disease doctors who have since been investigated for "conflict of interest") was that "chronic Lyme does not exist." Unbelievable falsehood!! The Lyme bacteria is a "spirochete" like syphilis and it kind of screws itself into our tissues. In other words, if you have Lyme, you're "screwed" (LOL!).
Lyme bacteria are very clever and often do not show up on lab testing - especially in the chronic stages of Lyme and especially in cases of "neurologic Lyme". In addition, our govt. pressures the labs to fine-tune their tests so that they will only show some of the people who have Lyme - the tip of the iceberg actually. That is why Lyme diagnosing has to be basically clinical rather than based on labs. I know there have already been posts here about a lab in California which specializes in Lyme testing - called IgenIX - and that is currently probably the best lab for Lyme testing in this country, but still, you can't just go by any lab test results on Lyme because all labs have to answer to our government - which does not want the Lyme testing to be too accurate.
For a real eye-opener and further information on what people with Lyme are going through in this country, read "Without A Cure" a book written by a medical writer whose entire family, including herself, had Lyme. Also, I highly recommend the DVD called "Under Our Skin" - which is easier than reading the above-mentioned book - for a quick insight into the dilemma of Lyme patients in the U.S. To see excerpts from this DVD, go to the ILADS website and click on "view videos" at the bottom of the page. Be sure to watch excerpt #1, #3, #5, and one called "Turn the Corner Foundation." ILADS is the International Lyme Disease website. Its President Elect had been diagnosed with ALS but really had Lyme.
Many of the Lyme patients on the DVD had been diagnosed with other neurologic conditions such as: MS, ALS, Parkinson, Lupus, fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome, etc. If they had not discovered that they actually had Lyme they would have died because Lyme, like syphilis, is a killer. That is why I am posting this lengthy discussion of Lyme on our MS website!! It is important for all of you, diagnosed or not, to consider investigating the possibility of Lyme. First, it is possible to have both, Lyme and MS (like Quix said, where is it written that we can have "only one"?). Second, your MS diagnosis may or may not be accurate. However, I'd say that if your current MS treatment has improved your symptoms, then you likely don't have Lyme - 'cause you'd be getting way worse with just MS treatments and no antibiotics.
How to investigate for Lyme? Rule #1: You MUST go to what is called a "Lyme-literate doctor" - be it an M.D. or a D.O. or an N.D. You can find a Lyme-literate doctor by contacting your local Lyme support group or through ILADS. Do NOT go to an infectious disease doctor: They wrote the chronic-Lyme-does-not exist policy nonsense and you will be blown off by them like I was 2 years ago.
There are precious few doctors now willing to treat Lyme patients because the govt. and the medical associations have instituted a "reign of terror" against capable physicians treating chronic Lyme. Such doctors have been persecuted/prosecuted. Excellent Lyme physicians who were saving the lives of many chronic Lyme patients have been dragged into court, accused of treating patients against national policy (i.e. there is no such thing as chronic Lyme) and had their licenses jerked and have been fined millions, bankrupted!! This has been happening silently around us.
Rule #2: Use IgenIX lab in California for your Lyme testing.
Rule #3: Don't rely on just test results. Lyme diagnosis is mainly a clinical thing since the tests have been altered under government pressure not to show everyone who has Lyme. According to ILADS, the current two-tiered ELISA/Western Blot testing fails to detect up to 90% of Lyme cases - effectively preventing most people with Lyme disease from being diagnosed and getting life-saving treatment.
The official government/medical statement on Lyme has recently changed, I was told, now stating that, yes, chronic Lyme DOES exist, but they declare there is no treatment for it. So I guess those brave doctors treating chronic Lyme effectively can still be persecuted/prosecuted by the govt/medical associations because they are violating the national policy that "there is no treatment for chronic Lyme."
Lyme is not a rare disease that is easily cured as our govt/medical officially state. Per the CDC, Lyme is the fastest growing vector-borne disease in the U.S. Early Lyme is more easily cured, but chronic Lyme treatment involves difficult and lengthy treatment. Lyme is epidemic and is in all states!! There may actually conservatively be more than 10 times the current estimate of new cases by the CDC (because of widespread non-diagnosing of Lyme).
So people, choose wisely!! You know how to proceed. Best of luck to all of you!!
WAF
WAF
After years of inquiry, I FINALLY got diagnosed - with Lyme. My deepest gratitude to Quix for suggesting I continue to pursue this route (even though I had done so 2 years ago to no avail and had therefore given up on Lyme inquiry). I am posting this to you MSers because it is of vital importance to you since many MS patients have been found to also be positive for Lyme.
Two years ago because of a positive Lyme test, I had been referred by my very concerned primary care physician to an infectious disease doctor. That idiot Infectious Disease doctor just sat across the room and coldly informed me that I "could not possibly have Lyme disease because chronic Lyme disease does not exist." Yep, that's the lie he handed me and I believed him because back then I thought all doctors were knowledgeable and truthful. My eyes had not yet been opened. And he was able to lie to me with impunity because our national policy/statement on Lyme (written by a team of infectious disease doctors who have since been investigated for "conflict of interest") was that "chronic Lyme does not exist." Unbelievable falsehood!! The Lyme bacteria is a "spirochete" like syphilis and it kind of screws itself into our tissues. In other words, if you have Lyme, you're "screwed" (LOL!).
Lyme bacteria are very clever and often do not show up on lab testing - especially in the chronic stages of Lyme and especially in cases of "neurologic Lyme". In addition, our govt. pressures the labs to fine-tune their tests so that they will only show some of the people who have Lyme - the tip of the iceberg actually. That is why Lyme diagnosing has to be basically clinical rather than based on labs. I know there have already been posts here about a lab in California which specializes in Lyme testing - called IgenIX - and that is currently probably the best lab for Lyme testing in this country, but still, you can't just go by any lab test results on Lyme because all labs have to answer to our government - which does not want the Lyme testing to be too accurate.
For a real eye-opener and further information on what people with Lyme are going through in this country, read "Without A Cure" a book written by a medical writer whose entire family, including herself, had Lyme. Also, I highly recommend the DVD called "Under Our Skin" - which is easier than reading the above-mentioned book - for a quick insight into the dilemma of Lyme patients in the U.S. To see excerpts from this DVD, go to the ILADS website and click on "view videos" at the bottom of the page. Be sure to watch excerpt #1, #3, #5, and one called "Turn the Corner Foundation." ILADS is the International Lyme Disease website. Its President Elect had been diagnosed with ALS but really had Lyme.
Many of the Lyme patients on the DVD had been diagnosed with other neurologic conditions such as: MS, ALS, Parkinson, Lupus, fibromyalgia, rheumatoid arthritis, chronic fatigue syndrome, etc. If they had not discovered that they actually had Lyme they would have died because Lyme, like syphilis, is a killer. That is why I am posting this lengthy discussion of Lyme on our MS website!! It is important for all of you, diagnosed or not, to consider investigating the possibility of Lyme. First, it is possible to have both, Lyme and MS (like Quix said, where is it written that we can have "only one"?). Second, your MS diagnosis may or may not be accurate. However, I'd say that if your current MS treatment has improved your symptoms, then you likely don't have Lyme - 'cause you'd be getting way worse with just MS treatments and no antibiotics.
How to investigate for Lyme? Rule #1: You MUST go to what is called a "Lyme-literate doctor" - be it an M.D. or a D.O. or an N.D. You can find a Lyme-literate doctor by contacting your local Lyme support group or through ILADS. Do NOT go to an infectious disease doctor: They wrote the chronic-Lyme-does-not exist policy nonsense and you will be blown off by them like I was 2 years ago.
There are precious few doctors now willing to treat Lyme patients because the govt. and the medical associations have instituted a "reign of terror" against capable physicians treating chronic Lyme. Such doctors have been persecuted/prosecuted. Excellent Lyme physicians who were saving the lives of many chronic Lyme patients have been dragged into court, accused of treating patients against national policy (i.e. there is no such thing as chronic Lyme) and had their licenses jerked and have been fined millions, bankrupted!! This has been happening silently around us.
Rule #2: Use IgenIX lab in California for your Lyme testing.
Rule #3: Don't rely on just test results. Lyme diagnosis is mainly a clinical thing since the tests have been altered under government pressure not to show everyone who has Lyme. According to ILADS, the current two-tiered ELISA/Western Blot testing fails to detect up to 90% of Lyme cases - effectively preventing most people with Lyme disease from being diagnosed and getting life-saving treatment.
The official government/medical statement on Lyme has recently changed, I was told, now stating that, yes, chronic Lyme DOES exist, but they declare there is no treatment for it. So I guess those brave doctors treating chronic Lyme effectively can still be persecuted/prosecuted by the govt/medical associations because they are violating the national policy that "there is no treatment for chronic Lyme."
Lyme is not a rare disease that is easily cured as our govt/medical officially state. Per the CDC, Lyme is the fastest growing vector-borne disease in the U.S. Early Lyme is more easily cured, but chronic Lyme treatment involves difficult and lengthy treatment. Lyme is epidemic and is in all states!! There may actually conservatively be more than 10 times the current estimate of new cases by the CDC (because of widespread non-diagnosing of Lyme).
So people, choose wisely!! You know how to proceed. Best of luck to all of you!!
WAF
WAF
Hi! Something about your moniker makes me VERY nervous!! How did someone with MS end up with the username of "tick123"? Regarding that girl you haven't seen: Lyme, untreated, kills. It is a "spirochete" bacteria similar to syphilis (which allegedly killed Napoleon).
WAF
WAF
I too wish you the very best of luck WAF
It's been a hard road, but you have done so well on getting a dx.
Please keep us all informed on how your doing.
Wishing you the very best,
Hugs,
Debs X
It's been a hard road, but you have done so well on getting a dx.
Please keep us all informed on how your doing.
Wishing you the very best,
Hugs,
Debs X
WAF-
Thank you for not taking my message out of text. I was worried you would not understand what I was trying to say.
I have always known Lyme was one of the mimics, but truthfully know next to nothing about it. I haven't felt the need to learn about any of the mimics once they were tested for and ruled out. I did have one of my Lyme tests done while living in CA but don't know if it was sent anywhere. I will have to check on that when I get back home.
I have to get going now. Time to go look at houses! But, I wanted to send a quick note and will write more later...
Hugs,
Addi
Hi, Drsdonthelp,
I'll try to answer your questions:
1) Do you always get the bulls eye rash when bitten? No. Most people never see a rash.
2)Does lyme show lesions like ms? Not sure. Maybe rarely.
3)Are all the symptoms the same as ms? Not sure all are the same, but MS and Lyme can share many symptoms.
4) Does lyme cause an EEG to be abnormal? Not sure.
5)Last one I promise :)... If you don't recall ever being bitten by a tick, and say you were a kid when it happened, what kind of problems would you be experiencing say 30 something years later? If this is or could be deadly, why wouldn't these doctors be looking to find if that is the cause for the neuro. symptoms sooner? That's pretty sad. For this answer, you'd best see the DVD, "Under Our Skin". You can go to the ILADS website and click on "view video" at the bottom of the page. There you can click on excerpts from that DVD. Be sure to see #1, #3, #5, and the "Turn the Corner Foundation" excerpt. If I remember right, in the Turn the Corner Foundation excerpt you will see a disabled teenager with contractures who can't walk down the stairs. In the DVD, the parents of that boy spoke and shared his story. They had told his pediatrician repeatedly of their concerns about Lyme and the boy's developmental problems since that boy was a toddler. They were blown off. The end result is that now that boy is extremely disabled, cannot walk or even talk. He had Lyme. Yes, it is sad.
For further, better information, please go to the MedHelp Lyme website. It is excellent. They know far more than I do. Wonko or JackieCalifornia will be glad to help you!!
Good luck to you!!
WAF
I'll try to answer your questions:
1) Do you always get the bulls eye rash when bitten? No. Most people never see a rash.
2)Does lyme show lesions like ms? Not sure. Maybe rarely.
3)Are all the symptoms the same as ms? Not sure all are the same, but MS and Lyme can share many symptoms.
4) Does lyme cause an EEG to be abnormal? Not sure.
5)Last one I promise :)... If you don't recall ever being bitten by a tick, and say you were a kid when it happened, what kind of problems would you be experiencing say 30 something years later? If this is or could be deadly, why wouldn't these doctors be looking to find if that is the cause for the neuro. symptoms sooner? That's pretty sad. For this answer, you'd best see the DVD, "Under Our Skin". You can go to the ILADS website and click on "view video" at the bottom of the page. There you can click on excerpts from that DVD. Be sure to see #1, #3, #5, and the "Turn the Corner Foundation" excerpt. If I remember right, in the Turn the Corner Foundation excerpt you will see a disabled teenager with contractures who can't walk down the stairs. In the DVD, the parents of that boy spoke and shared his story. They had told his pediatrician repeatedly of their concerns about Lyme and the boy's developmental problems since that boy was a toddler. They were blown off. The end result is that now that boy is extremely disabled, cannot walk or even talk. He had Lyme. Yes, it is sad.
For further, better information, please go to the MedHelp Lyme website. It is excellent. They know far more than I do. Wonko or JackieCalifornia will be glad to help you!!
Good luck to you!!
WAF
Regarding your comments about how it is scary - yes, it is scary in all the ways you mentioned!!
Why do lab tests at all? Well some lab test results can be positive and yours might be. I had 2 positive initial lab tests 2 years ago, but because of the negative backup tests, I was told they were "false positives." Also, even if your test results are not considered officially positive, they still might show the presence of bands which would only be present if you had Lyme (they are specific to Lyme). You might be only one band away from being considered positive (either by CDC standards or by IgenIX lab standards) and, once you go on antibiotic treatment and start "herxing" (having bad reactions because the bacteria being killed are releasing toxins that accumulate in your body) you might then have more bands show up leading to a positive lab result for you. Also the lab tests by IgenIX can show whether your Lyme disease is in an early or later stage. That's why you should do labs: But you are more likely to see the true picture with IgenIX labs.
You question about how do you know for sure? It's hard. Lyme is the great imitator of many other diseases. One indicator of Lyme might be if you "herx" (see above) to certain antibiotic treatment, or to cat's claw, or to anything that is known to kill Lyme bacteria, that would be something expected with Lyme. Most likely, MSers wouldn't have that reaction. But it is hard to know for sure. I heard on the news of 2 people dying in our state of what they and their families thought and been told was ALS, but on autopsy it was really Lyme.
Hope this helps a little.
Good luck to you!
WAF
Why do lab tests at all? Well some lab test results can be positive and yours might be. I had 2 positive initial lab tests 2 years ago, but because of the negative backup tests, I was told they were "false positives." Also, even if your test results are not considered officially positive, they still might show the presence of bands which would only be present if you had Lyme (they are specific to Lyme). You might be only one band away from being considered positive (either by CDC standards or by IgenIX lab standards) and, once you go on antibiotic treatment and start "herxing" (having bad reactions because the bacteria being killed are releasing toxins that accumulate in your body) you might then have more bands show up leading to a positive lab result for you. Also the lab tests by IgenIX can show whether your Lyme disease is in an early or later stage. That's why you should do labs: But you are more likely to see the true picture with IgenIX labs.
You question about how do you know for sure? It's hard. Lyme is the great imitator of many other diseases. One indicator of Lyme might be if you "herx" (see above) to certain antibiotic treatment, or to cat's claw, or to anything that is known to kill Lyme bacteria, that would be something expected with Lyme. Most likely, MSers wouldn't have that reaction. But it is hard to know for sure. I heard on the news of 2 people dying in our state of what they and their families thought and been told was ALS, but on autopsy it was really Lyme.
Hope this helps a little.
Good luck to you!
WAF
Thank you so much for your kind words and support!!! It has been 6 years of inquiry for me and, though disgusted at hosting Lyme bacteria, I'm so glad to be finally diagnosed. I would have preferred to have had a mild form of MS (if there is such a thing) because it's cleaner and I love this MS website and all of you MSers here who I am so fond of, but I think most of us who are diagnosed with something would usually have preferred a different diagnosis - right? Anyway, I'm so glad its Lyme and not ALS!!!
Regarding the governmental instructions to labs to limit the number of people diagnosed: This seems to be true and it is called being "cost effective." Lyme treatment can take a long time and be very expensive. It can mean insurance companies would have to pay lots on behalf of chronic Lyme patients as would companies where the Lymees take disability or leave of absence. Cost is the reason for not diagnosing a lot of chronic Lyme people. The part about excellent Lyme physicians being targeted, taken to court, and essentially put out of business or "stalled" or discouraged in their practice of treating Lyme also happens to be true. You can see it in the documentary DVD "Under Our Skin" or the book "Cure Unknown" (thank you Wonko!). However, I hear you and I believe you are right about the importance of leaving this info about our govt. out in future posts because people want to believe that our govt. has our best interests at heart. I know it can alienate, so I'll try not to inform readers about governmental actions in future posts. My son has repeatedly told me to leave the govt. out!!
Thanks so much, Wonko, for correcting me on the title of the book by Pamela Weintraub: Cure Unknown. I was having brain fog when I said it was "Without A Cure" - MSers know well what that is right? Well Lymees have the same thing!!! I actually (big rush) recently used a men's room without knowing it (until I came out). Fortunately no one else was in there!! At times we can be way gone mentally and at other times we're fine!! Kind of reminds me of the fog rolling into the beautiful Oregon coastline obscuring everything, and then it might lift in 30 minutes and everything is back to normal. Anyway, glad Wonko came to the rescue or you guys might have been looking a long time for the title I gave.
Anyway, I see my Lyme doctor today and may start on antibiotics today. Looking forward to doing something about the progressing symptoms I have been having lately. To understand the Lyme symptoms I'm having, just think about your MS symptoms - they can be the same (although Lyme can present in lots of different ways). And remember, whether we are already diagnosed with MS or something else, Lyme can still sneak into our lives. For your sakes, I sincerely hope it doesn't!!
Hugs to all!!
WAF
Regarding the governmental instructions to labs to limit the number of people diagnosed: This seems to be true and it is called being "cost effective." Lyme treatment can take a long time and be very expensive. It can mean insurance companies would have to pay lots on behalf of chronic Lyme patients as would companies where the Lymees take disability or leave of absence. Cost is the reason for not diagnosing a lot of chronic Lyme people. The part about excellent Lyme physicians being targeted, taken to court, and essentially put out of business or "stalled" or discouraged in their practice of treating Lyme also happens to be true. You can see it in the documentary DVD "Under Our Skin" or the book "Cure Unknown" (thank you Wonko!). However, I hear you and I believe you are right about the importance of leaving this info about our govt. out in future posts because people want to believe that our govt. has our best interests at heart. I know it can alienate, so I'll try not to inform readers about governmental actions in future posts. My son has repeatedly told me to leave the govt. out!!
Thanks so much, Wonko, for correcting me on the title of the book by Pamela Weintraub: Cure Unknown. I was having brain fog when I said it was "Without A Cure" - MSers know well what that is right? Well Lymees have the same thing!!! I actually (big rush) recently used a men's room without knowing it (until I came out). Fortunately no one else was in there!! At times we can be way gone mentally and at other times we're fine!! Kind of reminds me of the fog rolling into the beautiful Oregon coastline obscuring everything, and then it might lift in 30 minutes and everything is back to normal. Anyway, glad Wonko came to the rescue or you guys might have been looking a long time for the title I gave.
Anyway, I see my Lyme doctor today and may start on antibiotics today. Looking forward to doing something about the progressing symptoms I have been having lately. To understand the Lyme symptoms I'm having, just think about your MS symptoms - they can be the same (although Lyme can present in lots of different ways). And remember, whether we are already diagnosed with MS or something else, Lyme can still sneak into our lives. For your sakes, I sincerely hope it doesn't!!
Hugs to all!!
WAF
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