Aa
Mysterious Problem
Last Friday I couldn't sleep five minutes my arms were so tingling and numb. I went to the ER they did a CT scan and head and neck x-rays and a cbc. They said everything was normal, the ER doctor said I had an extra rib on one of my vertebrae which might be the problem. They referred me to a Neurologist. I went to the neurologist on the following Monday he set me up with a cervical MRI. The Neurologist didn't think the rib was anything. He did his nerve testing and evaluating and said it was normal. The MRI came back normal as well. Not knowing is almost as bad as knowing it is something bad. Back at square one.
Since last Saturday, I have been fatigued, stiff neck, creaking neck sound, sinus pain in the morning, nausea, testicular pain that comes and goes, frequent urination, shortness of breath, high blood pressure, stiffness of joints, twitching on the side of my face below the temple, not really a headache, but more like pressure in the back of my neck and sometimes behind my ears, numb tongue on tip, itchy skin mainly back of neck and scalp, floaters in the eyes, lightheadedness, dizzy, motion sickness when driving in passenger seat, confusion, difficulty concentrating, and forgetfulness. The tingling and numbness in the arms and legs is still there, but not as bad. I haven't had to use ambien to sleep for the last 4 days.
I tried to remember when this started and if it was related. I noticed the tongue problem at the beginning of September. In the middle of September I got a bad upper respiratory infection that lasted a few weeks. Since the respiratory infection I haven't been feeling well in general. Feeling out of it, general malaise, dizziness especially with sudden movements, nausea. At the beginning of October, I got worried my tongue was still furred and bothered me. I made an appointment to see an ENT. He cultured my throat and it came back negative for bacteria or viral, still awaiting yeast results could take 6 weeks. Other than that he said everything looked normal.
A friend of mine mentioned it could be Lyme disease. I remembered I went camping in the Georgia Mountains at the end of August. That is about a week before any of the symptoms appeared. (I do golf at least once a week at a course with many deer and often go through the woods to look for balls.) I researched it and I do have many symptoms of Lime disease.
I went back today for a MRI follow-up.
The Neurologist said he couldn't find anything wrong. He suggested I go to my normal doctor, because it wasn't Neurological, which was his field. He said he couldn't diagnosis it, because of the variables and it is not his specialty. He said if he had to guess he thought it might be viral meningitis that is starting to go away, mainly because of the very stiff neck and fatigue. I mentioned Lyme disease to him. The Doctor said he doubts its Lyme disease. He said it is not common in Georgia. He also said that I would have had a rash. He also said It usually starts with Arthritis. According to my research he is more than likely wrong on all accounts. He offered to give me a Lyme titers test if it would make me feel better. I agreed, funny thing is the lady who took my blood says she has a 13 yr old girl who comes in for blood work every so often. She got Lyme Disease camping in Tybee island, GA.
I guess I will find out in a week. Hopefully the test catches it if it is there. I have heard the ELISA test is not that accurate. I was wondering about heavy metal poisoning as well. The CBC test should more than likely catch metal poisonings? Just concerned, wondering what this could be.
Since last Saturday, I have been fatigued, stiff neck, creaking neck sound, sinus pain in the morning, nausea, testicular pain that comes and goes, frequent urination, shortness of breath, high blood pressure, stiffness of joints, twitching on the side of my face below the temple, not really a headache, but more like pressure in the back of my neck and sometimes behind my ears, numb tongue on tip, itchy skin mainly back of neck and scalp, floaters in the eyes, lightheadedness, dizzy, motion sickness when driving in passenger seat, confusion, difficulty concentrating, and forgetfulness. The tingling and numbness in the arms and legs is still there, but not as bad. I haven't had to use ambien to sleep for the last 4 days.
I tried to remember when this started and if it was related. I noticed the tongue problem at the beginning of September. In the middle of September I got a bad upper respiratory infection that lasted a few weeks. Since the respiratory infection I haven't been feeling well in general. Feeling out of it, general malaise, dizziness especially with sudden movements, nausea. At the beginning of October, I got worried my tongue was still furred and bothered me. I made an appointment to see an ENT. He cultured my throat and it came back negative for bacteria or viral, still awaiting yeast results could take 6 weeks. Other than that he said everything looked normal.
A friend of mine mentioned it could be Lyme disease. I remembered I went camping in the Georgia Mountains at the end of August. That is about a week before any of the symptoms appeared. (I do golf at least once a week at a course with many deer and often go through the woods to look for balls.) I researched it and I do have many symptoms of Lime disease.
I went back today for a MRI follow-up.
The Neurologist said he couldn't find anything wrong. He suggested I go to my normal doctor, because it wasn't Neurological, which was his field. He said he couldn't diagnosis it, because of the variables and it is not his specialty. He said if he had to guess he thought it might be viral meningitis that is starting to go away, mainly because of the very stiff neck and fatigue. I mentioned Lyme disease to him. The Doctor said he doubts its Lyme disease. He said it is not common in Georgia. He also said that I would have had a rash. He also said It usually starts with Arthritis. According to my research he is more than likely wrong on all accounts. He offered to give me a Lyme titers test if it would make me feel better. I agreed, funny thing is the lady who took my blood says she has a 13 yr old girl who comes in for blood work every so often. She got Lyme Disease camping in Tybee island, GA.
I guess I will find out in a week. Hopefully the test catches it if it is there. I have heard the ELISA test is not that accurate. I was wondering about heavy metal poisoning as well. The CBC test should more than likely catch metal poisonings? Just concerned, wondering what this could be.
I went to a Lyme Specialist at the end of November. She made the clinical diagnosis of Lyme. She also is sending out a number of tests to a lab in CA. She put me on heavy antibiotics now. She claims I am second stage and said I would have to take the medicine for two years. She did not think I will need to take it after that. The funny thing is, I had a bad feeling about the camping trip before I went. Weird I almost cancelled out. Hindsight is 20/20.
Ditto on the "You have Lyme!"
You do, you sound very much like me when I first became ill with the disease. At one point I would even wake up with both arms and legs numb. Testing is almost worthless - the tests are based on the strains found in Lyme, CT. There are over 100 strains in the US. The dominant positive strains have been removed from the average test due to the those who have a financial interest in developing a vaccine. They've removed these strains from the average tests since their vaccines will be based on them. However, very few people have received these flawed vaccines so those Western Blot bands should still be used for the majority of the population. The average lab only tests for 13 out of 32 bands. Get tested by Igenex out of CA. They test for all 32 bands and you will see your results for each band. You should also be tested for co-infections. Ticks can transmit more than one disease in a bite and this can complicate your treatment.
I was bitten in NC and was told "you have next to no chance of getting Lyme" despite the fact almost all my symptoms were pointing to Lyme. Ignorance almost killed me because I ended up with brain inflammation which took months to subside. I still can't shake my head without having pain and dizziness - 2.5 years later. I also ended up with permanent heart damage from going just a short time without antibiotics. I did not have a bullseye until 10 months into treatment and was only very lucky to even find it. You can see less than half you body so why people are expected to find this is beyond me - esp when only 20-50% of those infected have a bullseye. Also, arthritis and swollen knees and elbows are late stage symptoms - and even then not everyone gets them. The clinical course of this disease is different for everyone. Even the CDC says the diagnosis is to be clinical - and only about 1 out of 10 cases of the disease are even diagnosed. Why the resistance? Insurance companies that do not want to pay for expensive, long term treatment.
There are two sites I would advise you to look at on the web: www.lymenet.org and www.lymeinfo.net Both sites are a wealth of information and are highly recommended.
You need to be on antibiotics ASAP. You will likely have to travel a good distance to find treatment. At this stage in the game you may need to have access to antibiotics for life in order to control the disease. I know many people cringe at the idea but it is a reality for those of us suffering from Lyme. If we were diabetics that needed insulin people would be understanding but as people who can not fight off a serious infection, we are constantly met with resistance and denial which only serves to cause us very real physical damage. My immune system can not fight this disease and it is almost impossible to erradicate it. The spirochete takes many forms to avoid being killed by antibiotics. One form is a cystic form. When you take antibiotics the spirochete will encyst itself for protection and then come out once the threat is gone. It is estimated it can live in the cystic form for 9-12 years.
In addition, even if the disease could easily be erradicated with antibiotics you must take them much longer than for a normal infection. Antibiotics are generally dosed on a schedule of a bacteria that would replicate every 20 minutes. However, Lyme replicates every 12-20 hours. Due to the extended time frame needed to treat this infection as completely as you would your average bacterial infection it should take almost 2 years of continued antibiotic treatment.
{For anyone interested in learning more about this go to
http://www.lymeinfo.net/lymefiles.html
You can read here about persistence as well as cystic forms of Lyme Disease. At the very top left of the page is a link called "tick borne disease" click here and there you will find a wealth of information that may be of help.}
Best wishes to you for a healthier future.
You do, you sound very much like me when I first became ill with the disease. At one point I would even wake up with both arms and legs numb. Testing is almost worthless - the tests are based on the strains found in Lyme, CT. There are over 100 strains in the US. The dominant positive strains have been removed from the average test due to the those who have a financial interest in developing a vaccine. They've removed these strains from the average tests since their vaccines will be based on them. However, very few people have received these flawed vaccines so those Western Blot bands should still be used for the majority of the population. The average lab only tests for 13 out of 32 bands. Get tested by Igenex out of CA. They test for all 32 bands and you will see your results for each band. You should also be tested for co-infections. Ticks can transmit more than one disease in a bite and this can complicate your treatment.
I was bitten in NC and was told "you have next to no chance of getting Lyme" despite the fact almost all my symptoms were pointing to Lyme. Ignorance almost killed me because I ended up with brain inflammation which took months to subside. I still can't shake my head without having pain and dizziness - 2.5 years later. I also ended up with permanent heart damage from going just a short time without antibiotics. I did not have a bullseye until 10 months into treatment and was only very lucky to even find it. You can see less than half you body so why people are expected to find this is beyond me - esp when only 20-50% of those infected have a bullseye. Also, arthritis and swollen knees and elbows are late stage symptoms - and even then not everyone gets them. The clinical course of this disease is different for everyone. Even the CDC says the diagnosis is to be clinical - and only about 1 out of 10 cases of the disease are even diagnosed. Why the resistance? Insurance companies that do not want to pay for expensive, long term treatment.
There are two sites I would advise you to look at on the web: www.lymenet.org and www.lymeinfo.net Both sites are a wealth of information and are highly recommended.
You need to be on antibiotics ASAP. You will likely have to travel a good distance to find treatment. At this stage in the game you may need to have access to antibiotics for life in order to control the disease. I know many people cringe at the idea but it is a reality for those of us suffering from Lyme. If we were diabetics that needed insulin people would be understanding but as people who can not fight off a serious infection, we are constantly met with resistance and denial which only serves to cause us very real physical damage. My immune system can not fight this disease and it is almost impossible to erradicate it. The spirochete takes many forms to avoid being killed by antibiotics. One form is a cystic form. When you take antibiotics the spirochete will encyst itself for protection and then come out once the threat is gone. It is estimated it can live in the cystic form for 9-12 years.
In addition, even if the disease could easily be erradicated with antibiotics you must take them much longer than for a normal infection. Antibiotics are generally dosed on a schedule of a bacteria that would replicate every 20 minutes. However, Lyme replicates every 12-20 hours. Due to the extended time frame needed to treat this infection as completely as you would your average bacterial infection it should take almost 2 years of continued antibiotic treatment.
{For anyone interested in learning more about this go to
http://www.lymeinfo.net/lymefiles.html
You can read here about persistence as well as cystic forms of Lyme Disease. At the very top left of the page is a link called "tick borne disease" click here and there you will find a wealth of information that may be of help.}
Best wishes to you for a healthier future.
You've got Lyme!
I had the same presentation. Take the Western Blot test, and get ready to love antibiotics.
(BTW, many people call it "Lymes" with an "s", but the condition is called Lyme Disease, after Lyme (really East Lyme) CT, where it was first identified. A recent book on the subject, Bullseye, by Jonathan Edlow of Harvard Med, will give you a sane and balanced overview of the history, nature, and treatment of Lyme---about each of which there is plenty of controversey)...
I had the same presentation. Take the Western Blot test, and get ready to love antibiotics.
(BTW, many people call it "Lymes" with an "s", but the condition is called Lyme Disease, after Lyme (really East Lyme) CT, where it was first identified. A recent book on the subject, Bullseye, by Jonathan Edlow of Harvard Med, will give you a sane and balanced overview of the history, nature, and treatment of Lyme---about each of which there is plenty of controversey)...
I was diagnosed with Lyme 4 years ago. I had many of the same strange symptoms. I also went 8 mos with no diagnosis. I was unaware of controversy of Lyme Disease between doctors until I was tossed around the medical field for months sick as ever. I tested positive on the Elisa and the Western Blot test had 3 of 5 bands positive. Some doctors considered this Lyme but some doctors will only follow CDC standards and all 5 bands must be positive on the WB in order to be diagnosed with the disease.
I responded to antibiotic treatment (Flagyl, more than Doxycycline) and so many of my strange neurological symptoms have subsided.
I was told by my lyme MD that with the results of my spinal tap, I could have been given a diagnosis of MS by a doctor skeptical of lyme. He told me that the CSF of lyme patients shows so many of the same things as MS.
Good luck getting the proper diagnosis and treatment. Sometimes it takes a long time.
I responded to antibiotic treatment (Flagyl, more than Doxycycline) and so many of my strange neurological symptoms have subsided.
I was told by my lyme MD that with the results of my spinal tap, I could have been given a diagnosis of MS by a doctor skeptical of lyme. He told me that the CSF of lyme patients shows so many of the same things as MS.
Good luck getting the proper diagnosis and treatment. Sometimes it takes a long time.
Continue your search. don't give up. I was told it was not MS by every single neurologist that saw me, including a head of a dept. at Miami University. I will not mention names. You also need to know that the MS specialist that diagnosed my MS was the only one who saw any sign of MS in my MRI, all others said it was clear! In my case, only a Neurologist specialized in this condition would have seen the markings of MS. It is not always easy to detect it, and there is a small % that does not show in MRI's. So don't guide yourself on that.
Three weeks after my first crisis, when I came out of the hospital and the doctors where baffled by my condition, I went in the internet to do research. I needed to Know! By the end of the research I printed a page, my husband walked in the room, and I handed him the paper. I then said tho him, "If I don't have MS I'll eat this paper". You do not know what I went through the following six months! "Silent seizures" was the dx of one of the top neuro, yet I was not any better. Well, four neurologist later and six months later finally someone told me what I had. I was so happy! People ask me if I was devastated to hear that I had MS. (Progressive) I was delighted. Finally I got my answer and I could be treated correctly.
So, continue your search. I will keep you in my prayers.
Three weeks after my first crisis, when I came out of the hospital and the doctors where baffled by my condition, I went in the internet to do research. I needed to Know! By the end of the research I printed a page, my husband walked in the room, and I handed him the paper. I then said tho him, "If I don't have MS I'll eat this paper". You do not know what I went through the following six months! "Silent seizures" was the dx of one of the top neuro, yet I was not any better. Well, four neurologist later and six months later finally someone told me what I had. I was so happy! People ask me if I was devastated to hear that I had MS. (Progressive) I was delighted. Finally I got my answer and I could be treated correctly.
So, continue your search. I will keep you in my prayers.
I thought it was MS at first too. The doctors told me MS would be asymmetrical (not glove and stocking, this was effecting both arms and both legs.) They also said they would of seen it on the MRI.
After doing research on Lymes, having gone camping in an area that there have been cases reported before. I went camping a week or so before any of this happened, finding out Lymes is not detectable on a cbc test. Taking a symptom survey and having 35 of 38 symptoms of Lymes are pretty big coincidences.
I will find out one way or another. The sad thiing is I had to diagnosis it myself, and ask the doctor for a Lymes titers test. It was the farthest thing from his mind. He was so uninformed on Lymes, saying it always has a rash, it starts with Arthritis, etc.
If the test doesn't catch it. I am going to a Lyme informed doctor in my area for other tests. If it is not Lymes, I will head to a medical university in my area. I will find out, I must.
After doing research on Lymes, having gone camping in an area that there have been cases reported before. I went camping a week or so before any of this happened, finding out Lymes is not detectable on a cbc test. Taking a symptom survey and having 35 of 38 symptoms of Lymes are pretty big coincidences.
I will find out one way or another. The sad thiing is I had to diagnosis it myself, and ask the doctor for a Lymes titers test. It was the farthest thing from his mind. He was so uninformed on Lymes, saying it always has a rash, it starts with Arthritis, etc.
If the test doesn't catch it. I am going to a Lyme informed doctor in my area for other tests. If it is not Lymes, I will head to a medical university in my area. I will find out, I must.
Have you considered MS? I spent many months with many of your symptoms, saw 6 Neurologysts that could not figure out what I had. Some of them even flatly discarted the possibility of MS. But, sure enough, it was. So please get a second opinion, and dont stop until you get an answer. Your symptoms have a name, and there is a doctor out there who can help you find it. It took me seven months, but I found it. I am now getting the treatment I need and feeling much better. God Bless.
i hope your mother saw a neurologist and has had mris of her spine and head............good luck
I have a good friend who had many of the same symptoms that you have described. He was finally diagnosed with prostatitis, the doctor did a PSA blood test, and a test to measure for joint imflamation- both of these were very high... He was put on a massive dose of antibiotics and after about a month, he is feeling better. He was also treated for Lyme disease even though his test was negative- because he had so many of the key symptoms. I really hope this helps!
Laura
Laura
MY MOTHER HAS VERY SIMILAR SYMPTOMS. IT HAS BEEN TOUGH ON MYSELF SEEING HER SUFFER FOR THE PAST TWO YEARS AND DOCTORS SEEMING TO BE HELPLESS TO DO ANYTHING ABOUT IT AS WELL. SHE HAS TINGLING THROUGHOUT HER BODY AND SAYS IT FEELS LIKE THERE IS SOMETHING PUSHING DOWN ON HER ABDOMEN AREA TO JUST ABOVE HER LEGS. EXCUSE ANY BAD GRAMMER, I AM ONLY 15. PLEASE E-MAIL ME ANY INFORMATION YOU MAY COME ACROSS. MY BEST WISHES TO YOU!
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I forgot to mention that I took Lamisil Tablets for three months and stopped at the end of August. The doctor told me that it will remain in my system for months after. That could explain the furred tongue maybe other problems as well. Also, the dates are off, after reading this it seems like it all happened within a week. I actually went to the ER on nov 8, had MRI on Novemeber 13th.
Your symptoms are very complex and invovle more then just your neurologic structures. Therefore, considering diseases such as lyme which affect the nervous system and body is reasonable. I do not know the prevelance of Lyme in Georgia, but you could probably find information regarding this at the Centers for Disease Control website. Other things to consider are connective tissue diseases, and sarcoidosis.
If you are still concerned after the Lyme test, I would recommend a second opinion at an academic medical center. Good luck.
If you are still concerned after the Lyme test, I would recommend a second opinion at an academic medical center. Good luck.
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