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Post by Little Bear (LB) on Aug 5, 2017 2:03:59 GMT
Hi Randy!-
Were doctors trying to diagnose you with ALS before you knew that you had Lyme and co's? OR after you started treatment for Lyme?
I am just curious, because I never had a doctor diagnose me with MS until AFTER I started treatment for Lyme and all hell broke loose with weird symptoms.
Long story short..... After a couple of months of Lyme treatment, I had an appointment with my GP (he is Lyme friendly). On that day I was unable to talk, my reflexes were not working properly when he tested them, and I was having difficulties with walking. He told me to go to the Emergency Room. I shook my head "NO" because I knew that it would be a waste of time and money.
Well.... my husband and I decided to go after awhile, because we didn't know if something more was going on than just Lyme. The ER doctor suggested that I might have MS and to set up an appointment with a neurologist who would be able to tell me if this was MS or Lyme. Their neurologist was a huge waste of money. She didn't know anything. I spent 20 minutes stuttering through reading an eye chart and the neurologist only spent 15 minutes with me. She suggested that I get an MRI.
Through all my 27 years of weird symptoms that would come and go, not one doctor ever mentioned MS to me, until I was herxing bad from Lyme and co.
Also, my husband works with a guy who had Lyme Disease around 1980. Doctors didn't know what was wrong with him, because he had severe muscle wasting in his upper arms. The doctors put this guy into the HIV ward, because they didn't know what he had.
I wish that the medical community would take Lyme Disease more seriously!
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Post by Randy on Aug 5, 2017 3:25:38 GMT
WoW sounds a bit like me and many other folks Ive talked with. I was told I had "ALS" before my Lyme test because of twitching and muscle loss in hands and shoulders and speech issue. EMG was sorta inconclusive but docs called it based on symptoms. I have since learned "ALS,MS,Alzheimer's and Parkinson's plus Fibro" are all Lyme & Cos.
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Post by girlie on Aug 5, 2017 10:03:34 GMT
WoW sounds a bit like me and many other folks Ive talked with. I was told I had "ALS" before my Lyme test because of twitching and muscle loss in hands and shoulders and speech issue. EMG was sorta inconclusive but docs called it based on symptoms. I have since learned "ALS,MS,Alzheimer's and Parkinson's plus Fibro" are all Lyme & Cos. I guess I was 'lucky' and the ALS, MS, Parkinson's were ruled out. When my GP was testing me every week to find an answer to what was causing my symptoms...I ended up at an Endocrinologist appt. (because of high cortisol)...After he had me do some more tests to rule out an Adrenal tumor (plus a CT of my adrenals) - he said I was fine. I wanted a second opinion - so my GP sent me to another Endocrinologist that I chose. He did a more thorough test...and said it wasn't an endocrine issue, it was a neuromuscular issue and I should see a Neurologist. So a few months later I went to the Neurologist appt. for him to rule out MS, Parkinson's and ALS...which he did. He didn't think my weakness was significant enough, and my tremors were mild, and he reported no muscle wasting in my left hand (there clearly was) I passed the ALS test - where they lightly rub the bottom of your foot...and depending on what your reflex is an indication whether or not you may have ALS. He sent me to a Physiatrist who did the NCS and EMG. What a horrible time in my life.
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Post by DJ on Aug 5, 2017 12:58:04 GMT
Hi Randy!-
Were doctors trying to diagnose you with ALS before you knew that you had Lyme and co's? OR after you started treatment for Lyme?
I am just curious, because I never had a doctor diagnose me with MS until AFTER I started treatment for Lyme and all hell broke loose with weird symptoms.
Long story short..... After a couple of months of Lyme treatment, I had an appointment with my GP (he is Lyme friendly). On that day I was unable to talk, my reflexes were not working properly when he tested them, and I was having difficulties with walking. He told me to go to the Emergency Room. I shook my head "NO" because I knew that it would be a waste of time and money.
Well.... my husband and I decided to go after awhile, because we didn't know if something more was going on than just Lyme. The ER doctor suggested that I might have MS and to set up an appointment with a neurologist who would be able to tell me if this was MS or Lyme. Their neurologist was a huge waste of money. She didn't know anything. I spent 20 minutes stuttering through reading an eye chart and the neurologist only spent 15 minutes with me. She suggested that I get an MRI.
Through all my 27 years of weird symptoms that would come and go, not one doctor ever mentioned MS to me, until I was herxing bad from Lyme and co.
Also, my husband works with a guy who had Lyme Disease around 1980. Doctors didn't know what was wrong with him, because he had severe muscle wasting in his upper arms. The doctors put this guy into the HIV ward, because they didn't know what he had.
I wish that the medical community would take Lyme Disease more seriously!
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Post by DJ on Aug 5, 2017 13:15:42 GMT
Hi all,
The first thing they dx me with was MS Little Bear, That's all I heard from doctors, and because of my age, ha ha, they said it was menopalos! Than the next thing I had was romatory? arthritis, which is mainly hereditary! ha ha, I told them there was no such thing in my family medical history! duh idiots! Than it was Lou Garics disease ( my spelling probably wrong) Now I have alzheimer's disease LOL ( my age!). I was like no idiots, try lyme disease! If I had all the diseases they said I did, I would be dead by now!
The funny thing is I always tested positive for Lyme and co infections! I even tested positive with the CDC! But still I was told so many different things, I just said the heck with this, I know what I have and smarter than them and they hated it. O boy did I argue with them. I went into a lyme rage at some of them! Went through a lot of cr*p with doctors than I walked away from the medical field to find my own treatment! So much stress and frustration for me and a huge waste of money! I know some that went bankrupt over trying to get medical help.
I went through so many test and MRi'S it isn't funny! I even had an HIV test done, duh jerks! I don't think they missed to many test with me!
I am with the rest of u about CDC and the rest of those idiots to get a grip on this disease! But they won't... to scared to find out what Lyme is all about and where it came from, that means LAW SUITS and a HUGE embarrassment!
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Post by Admin/ Traveler on Aug 5, 2017 16:10:42 GMT
I'm sure you all have read how I was yelled at by my GP at the time because he diagnosed me with MS and I refused to start treatments, so he yelled at me "If you don't start treatments TODAY, you will die!" - I was NOT a happy camper about that, as my (at the time) young kids were with me, and so I had to explain it all to them, and reassure them that the doctor didn't know what he was talking about. My other diagnoses were fairly innocuous though - Fibro, CFS and others like that, but mostly that I was a very healthy 90 year old (I was in my late 20's/early 30's at the time).....the humor was lost on me.
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Post by Randy on Aug 5, 2017 17:12:14 GMT
I think the biggest issue is what doc you see. One doc can say one thing and another can say another thing. Either way those diseases dont exist. All the testing they do for those are just looking at what lyme does to us. I was told I was a slow progresser LMMFAO! Anywho, after I learned the truth I left any and all docs except for my gp who I see for my cannabis card once a year.
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Post by Little Bear (LB) on Aug 5, 2017 19:29:11 GMT
WoW sounds a bit like me and many other folks Ive talked with. I was told I had "ALS" before my Lyme test because of twitching and muscle loss in hands and shoulders and speech issue. EMG was sorta inconclusive but docs called it based on symptoms. I have since learned "ALS,MS,Alzheimer's and Parkinson's plus Fibro" are all Lyme & Cos. Hi Randy!-
Thank you for your response!
This is very heartbreaking! So many people are being misdiagnosed!
I have a friend that I have known since high school. She texted me when she found out that I had Lyme Disease. I texted her my story of weird symptoms through the years and being misdiagnosed with other issues. She was shocked when she read my text. She said that her husband had a lot of similar symptoms as me.
Her husband was diagnosed with Lyme through a chiropractor that he saw. He freaked out when the chiropractor mentioned the possibility of Lyme and never went back to that chiropractor. Long Story short.... He still has symptoms and never got treatment. Recently, my friend from high school texted me that she just got diagnosed with Fibro.
She said that she was tested for Lyme 4 times and that all tests were negative. I have mentioned to her to get tested through IGENEX, because regular labs are worthless and a lot of doctors don't even know how to properly read test results.
She is very mind set that she has Fibro. because who wants to think that a doctor would ever misdiagnose someone. She has mentioned that the diagnosis of Fibro makes sense to her because her Aunt and Cousin also have Fibro.
I could just about scream!!!!
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Post by Little Bear (LB) on Aug 5, 2017 19:51:23 GMT
WoW sounds a bit like me and many other folks Ive talked with. I was told I had "ALS" before my Lyme test because of twitching and muscle loss in hands and shoulders and speech issue. EMG was sorta inconclusive but docs called it based on symptoms. I have since learned "ALS,MS,Alzheimer's and Parkinson's plus Fibro" are all Lyme & Cos. I guess I was 'lucky' and the ALS, MS, Parkinson's were ruled out. When my GP was testing me every week to find an answer to what was causing my symptoms...I ended up at an Endocrinologist appt. (because of high cortisol)...After he had me do some more tests to rule out an Adrenal tumor (plus a CT of my adrenals) - he said I was fine. I wanted a second opinion - so my GP sent me to another Endocrinologist that I chose. He did a more thorough test...and said it wasn't an endocrine issue, it was a neuromuscular issue and I should see a Neurologist. So a few months later I went to the Neurologist appt. for him to rule out MS, Parkinson's and ALS...which he did. He didn't think my weakness was significant enough, and my tremors were mild, and he reported no muscle wasting in my left hand (there clearly was) I passed the ALS test - where they lightly rub the bottom of your foot...and depending on what your reflex is an indication whether or not you may have ALS. He sent me to a Physiatrist who did the NCS and EMG. What a horrible time in my life. Hi Girlie!-
Thank you for sharing your story!
"and my tremors were mild" OMG!!!! What "normal" healthy person has tremors! This was obviously a symptom that something was attacking your body!
"I passed the ALS test- where they lightly rub the bottom of your foot" I'm sorry, but if this is how they diagnose ALS, I would also have this as a diagnosis. This is what partly angers me. It is these "worthless" tests that the doctor uses for a diagnosis.
I have heard a little about the "test" that a doctor will give to a person that they think has Fibro. The doctor will press of different parts of your body to see if they are tender and painful. Well... I guess that I would also have Fibro as a diagnosis.
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Post by Little Bear (LB) on Aug 5, 2017 20:12:30 GMT
Hi all, The first thing they dx me with was MS Little Bear, That's all I heard from doctors, and because of my age, ha ha, they said it was menopalos! Than the next thing I had was romatory? arthritis, which is mainly hereditary! ha ha, I told them there was no such thing in my family medical history! duh idiots! Than it was Lou Garics disease ( my spelling probably wrong) Now I have alzheimer's disease LOL ( my age!). I was like no idiots, try lyme disease! If I had all the diseases they said I did, I would be dead by now! The funny thing is I always tested positive for Lyme and co infections! I even tested positive with the CDC! But still I was told so many different things, I just said the heck with this, I know what I have and smarter than them and they hated it. O boy did I argue with them. I went into a lyme rage at some of them! Went through a lot of cr*p with doctors than I walked away from the medical field to find my own treatment! So much stress and frustration for me and a huge waste of money! I know some that went bankrupt over trying to get medical help. I went through so many test and MRi'S it isn't funny! I even had an HIV test done, duh jerks! I don't think they missed to many test with me! I am with the rest of u about CDC and the rest of those idiots to get a grip on this disease! But they won't... to scared to find out what Lyme is all about and where it came from, that means LAW SUITS and a HUGE embarrassment! Hi DJ!-
Thank you for sharing your story!
I think that the ER doctor even said that I probably had MS because I was around that "certain age". Meanwhile, my husband was telling the doctor that I have Lyme disease and was currently treating it with antibiotics. The doctor and nurse had the dumbest look on their faces.
"I was like no idiots, try lyme disease! If I had all the diseases they said I did, I would be dead by now!" I couldn't have said it any better!!!
This is beyond sad when we have to argue with doctors about a POSITIVE Lyme test. What I don't get, is that doctors are always the first to say that a "negative" test is absolutely guaranteed that you don't have Lyme. But, a Positive test is probably a false positive and that the person doesn't have Lyme. It is only when a Lyme test comes back positive that the doctor questions the reliability of the test.
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Post by Little Bear (LB) on Aug 5, 2017 20:22:11 GMT
I'm sure you all have read how I was yelled at by my GP at the time because he diagnosed me with MS and I refused to start treatments, so he yelled at me "If you don't start treatments TODAY, you will die!" - I was NOT a happy camper about that, as my (at the time) young kids were with me, and so I had to explain it all to them, and reassure them that the doctor didn't know what he was talking about. My other diagnoses were fairly innocuous though - Fibro, CFS and others like that, but mostly that I was a very healthy 90 year old (I was in my late 20's/early 30's at the time).....the humor was lost on me. Hi Traveler!-
That is absolutely horrible that the doctor told you would die, if you didn't start treatment for MS that day! And to say that in front of your children was very unprofessional!
It is very sad to hear all the stories of how we have been treated by doctors. And all the stupid comments that doctors have said to us over the years. I should write a book on all the stupid things that doctors have told me through the years.
We are the patients! We are the ones that are sick and looking for answers!
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Post by Admin/ Traveler on Aug 5, 2017 21:49:18 GMT
LB, share this video with your friend: CDC admits that many tests may be needed for Lyme diagnosis and you can bring up that there are over 700 scientific articles on seronegative Lyme proving that just because a person has a negative test does not mean that they don't have the infection. If you need the list, let me know!
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Post by girlie on Aug 6, 2017 8:17:35 GMT
I guess I was 'lucky' and the ALS, MS, Parkinson's were ruled out. When my GP was testing me every week to find an answer to what was causing my symptoms...I ended up at an Endocrinologist appt. (because of high cortisol)...After he had me do some more tests to rule out an Adrenal tumor (plus a CT of my adrenals) - he said I was fine. I wanted a second opinion - so my GP sent me to another Endocrinologist that I chose. He did a more thorough test...and said it wasn't an endocrine issue, it was a neuromuscular issue and I should see a Neurologist. So a few months later I went to the Neurologist appt. for him to rule out MS, Parkinson's and ALS...which he did. He didn't think my weakness was significant enough, and my tremors were mild, and he reported no muscle wasting in my left hand (there clearly was) I passed the ALS test - where they lightly rub the bottom of your foot...and depending on what your reflex is an indication whether or not you may have ALS. He sent me to a Physiatrist who did the NCS and EMG. What a horrible time in my life. Hi Girlie!-
Thank you for sharing your story!
"and my tremors were mild" OMG!!!! What "normal" healthy person has tremors! This was obviously a symptom that something was attacking your body!
"I passed the ALS test- where they lightly rub the bottom of your foot" I'm sorry, but if this is how they diagnose ALS, I would also have this as a diagnosis. This is what partly angers me. It is these "worthless" tests that the doctor uses for a diagnosis.
I have heard a little about the "test" that a doctor will give to a person that they think has Fibro. The doctor will press of different parts of your body to see if they are tender and painful. Well... I guess that I would also have Fibro as a diagnosis.
The foot test - is called the Babinski test...they take a tool and rub the bottom of the foot - and depending on your reflex it is a sign you may have ALS (I think it's also for MS). The physiatrist doing the emg and ncs was a weirdo. And, I wasn't prepared that the NCS would hurt. (jabbing needles into my arm and hand)
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Post by Admin/ Traveler on Aug 6, 2017 17:41:56 GMT
Oh, I hated those tests where they jab needles into the arms and legs to test the nerve responses!! I started refusing them after the first 3 - all it did was set off my nervous system for a week. It never once helped me get a Lyme diagnosis or treatments. I started telling Neuro's that they were not allowed to touch my feet too - gentle they were not!!!
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Post by Little Bear (LB) on Aug 6, 2017 18:18:18 GMT
LB, share this video with your friend: CDC admits that many tests may be needed for Lyme diagnosis and you can bring up that there are over 700 scientific articles on seronegative Lyme proving that just because a person has a negative test does not mean that they don't have the infection. If you need the list, let me know! Hi Traveler!-
I have shared videos, scientific articles, told her to watch Under Our Skin. I really think that she might have Lyme. Her and their family go camping a couple times a year. Her husband was told by his chiropractor that he most likely has Lyme.
I have hinted to her that I can understand her symptoms, because Lyme and Fibro have a lot of similar symptoms.
Have you ever looked up the symptoms of Fibromyalgia? It is very sad, because it is all the same symptoms of Lyme Disease. It is LYME DISEASE!
I feel like it doesn't matter how much valuable information I give to her. She is one of those people that trusts doctors.
Plus now, people think that just because I have Lyme, that I think everyone else has it also.
I have mentioned several times for her to get tested through IGENEX and to not get tested through her regular clinic. It all falls upon deaf ears. Nobody wants to believe that an "average" person (me) would know more about a serious disease than their family doctor.
Thank You!
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Post by Admin/ Traveler on Aug 7, 2017 16:33:30 GMT
LB, I HAVE the symptoms of Fibro - no need to look them up. That was my first misdiagnosis and I have been living with it for about 27 years now. Believe me when I say that Lyme produces those same symptoms - and more. If the opportunity comes around, you can feel free to either mention my case, or share my email with her as someone that was diagnosed with Fibro for about 17 years before we found the real cause, and once I treated for the tick-borne infections, my Fibro symptoms "magically" went away as well because it was Lyme and company all along. I had just over 2 full years with zero symptoms (it was a little rude to allow me to feel that good in my opinion!!! LOL!).
But, we can only do what we can, unfortunately. As the saying goes, you can lead a horse to water, but you can't make him drink. And so it goes with humans.... you can lead a human to information, but you can't make them think. I'm very sorry for your friend, and I do hope that one day soon she sees the information clearer.
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