Aa
Is this MS, Lyme, something else...can't get any answers.
About 5 years ago, there were a couple of months during which I would feel intermittently lightheaded . It was annoying but only happened a few times, so I didn't worry. I then went for about 2 years until the same lightheadedness came back, this time along with frequent urination (no urgency, just felt like I needed to go alot more than normal), mild headaches, and fatigue. This time, it occurred much more often over the two-month period I was having symptoms. In Fall of '04, the aforementioned symptoms returned, with the addition of visual floaters, and an increase in the intensity of the fatigue. Once again, this lasted for 2-3 months. Finally, in the last few months, all of the symptoms have returned once again (with the exception of headaches), with one more addition: very light intermittent tingly / numbness in parts of my left foot. I also have trouble concentrating sometimes.
I have have been to my GP many times, a neurologist whose opinion it was that I had no neurological deficit, and a sleep specialist. I also have been to an ophthalmologist about the floaters, who said she couldn't see the floaters through the slit lamp. I have had every blood test known to man, a normal head MRI in Oct. '04 , and a normal sleep study. Their latest thing was a Lyme test, from which I have yet to hear results. I am from KY, so Lymeseems. Does this sound neurological? Perhaps MS? Does it sound consistent with Lyme? The sometimes cognitive symptoms scare me, as I am a lawyer, and I kind of need to be able to think. Any suggestions as to what I should do next?
Thanks
I have have been to my GP many times, a neurologist whose opinion it was that I had no neurological deficit, and a sleep specialist. I also have been to an ophthalmologist about the floaters, who said she couldn't see the floaters through the slit lamp. I have had every blood test known to man, a normal head MRI in Oct. '04 , and a normal sleep study. Their latest thing was a Lyme test, from which I have yet to hear results. I am from KY, so Lymeseems. Does this sound neurological? Perhaps MS? Does it sound consistent with Lyme? The sometimes cognitive symptoms scare me, as I am a lawyer, and I kind of need to be able to think. Any suggestions as to what I should do next?
Thanks
Negative Lyme tests mean nothing ........ Please see a Lyme Literate physcian. There is a very good one in Missouri. Go to Lymenet.org, click on flas discussion on the left hand side of the page and they will fill ou in on the details.
I am tired of neurologists that are greatly misinformed about lyme. They are not listening to there patients.
robi
I am tired of neurologists that are greatly misinformed about lyme. They are not listening to there patients.
robi
Well, the Lyme tests came back, and they were both negative. One the Western Blot, it had a section for the number of bands present, which was zero. Onward in trying to find out what the heck is wrong with me.
There are many cases of Lyme in California, especially in Ukiah and Santa Cruz Counties.
Since direct lab reporting was implemented in California in August of 2005, the Cal. Dept. of Health is reporting three times more cases in 2006 than 2005, and six times more cases than in 2004 (as of April, the latest date for which figures are available).
A survey in an endemic area of Northern California showed that doctors only considered a diagnosis of Lyme disease in one out of 25 patients who came in with Lyme-compatible symptoms.
Your specific symptoms are certainly consistent with the hundreds of people I've interviewed with the disease. But the best thing to do is see a physican experienced with Lyme diagnosis and treatment.
Since direct lab reporting was implemented in California in August of 2005, the Cal. Dept. of Health is reporting three times more cases in 2006 than 2005, and six times more cases than in 2004 (as of April, the latest date for which figures are available).
A survey in an endemic area of Northern California showed that doctors only considered a diagnosis of Lyme disease in one out of 25 patients who came in with Lyme-compatible symptoms.
Your specific symptoms are certainly consistent with the hundreds of people I've interviewed with the disease. But the best thing to do is see a physican experienced with Lyme diagnosis and treatment.
Since you seem to be knowledgeable on this subject, I thought I would ask you if any of the following symptoms seems like they can be caused by Lyme disease:
One episode of electric shock like feeling in head and face w/
simultaneous buzzing in ears- felt almost like a lightening bolt had hit me
Several stroke-like episodes w/ temporary paralysis (lasting only seconds)in face.-usually affects entire face. Sometimes seems related to vibrations or low resonating sounds...other times no explanation.
While sleeping, have heard an odd sound in my head/ears and have a sensation as if a gas bubble has burst in my head- immediately wakes me up & then I have to gasp for breath.
Hot flash type feelings that last for hours- my body feels almost as if it were a furnace. This seems to sometimes precede the stroke-like symptoms
Equilibrium/balance issues- floor often appears/feels as if it is moving. Had one episode where it felt like the building jumped underneath me. Also head feels like it is swimming-sort of like a "bobble head"
Tingling, burning, pins and needles mainly in head and face, but also all over body.
Hands fall asleep often.
Aching/soreness in joints & muscles- especially hands, neck & shoulders
Weakness in legs
Headaches- also head feels stuffy/tight
My GP said there hasn't been any reported cases of Lyme in CA since 1970 (which I find hard to believe) and wouldn't even consider it as a possibility...however I am seeing a neurologist who did make mention of it and did some blood work to test for it(not sure which tests yet). I read all about the inaccuracy of the standard tests and just in case the results come up negative, I went ahead an ordered some test kits from IGENEX and plan to take them with me to my follow-up appt. I also just had an MRI/MRA to rule out other possible causes.
One episode of electric shock like feeling in head and face w/
simultaneous buzzing in ears- felt almost like a lightening bolt had hit me
Several stroke-like episodes w/ temporary paralysis (lasting only seconds)in face.-usually affects entire face. Sometimes seems related to vibrations or low resonating sounds...other times no explanation.
While sleeping, have heard an odd sound in my head/ears and have a sensation as if a gas bubble has burst in my head- immediately wakes me up & then I have to gasp for breath.
Hot flash type feelings that last for hours- my body feels almost as if it were a furnace. This seems to sometimes precede the stroke-like symptoms
Equilibrium/balance issues- floor often appears/feels as if it is moving. Had one episode where it felt like the building jumped underneath me. Also head feels like it is swimming-sort of like a "bobble head"
Tingling, burning, pins and needles mainly in head and face, but also all over body.
Hands fall asleep often.
Aching/soreness in joints & muscles- especially hands, neck & shoulders
Weakness in legs
Headaches- also head feels stuffy/tight
My GP said there hasn't been any reported cases of Lyme in CA since 1970 (which I find hard to believe) and wouldn't even consider it as a possibility...however I am seeing a neurologist who did make mention of it and did some blood work to test for it(not sure which tests yet). I read all about the inaccuracy of the standard tests and just in case the results come up negative, I went ahead an ordered some test kits from IGENEX and plan to take them with me to my follow-up appt. I also just had an MRI/MRA to rule out other possible causes.
I Cannot give you a clinicl diagnosis over the internet unfortunately, as this site is purely educational
Lyme disease is relatively common in certain areas (such as New England), I believe Kentucky is not one of them. It usually presents initially with a rash, and headache from meningeal irriatation. Later on one can get peripheral nerve or nerve root problems, and very rarely, cognitive difficulties.
MS presents with dicrete episodes of a focal neurological complaint such as vision loss in one eye, weakness or clumisness on one side of the body etc, thats last between 1-3 weeks then goes away, and is associated with abnormal MRIs
Tingling in the foot is relatively non-specific without other neurological symptoms. An EMG study of the leg could ruleout a more widespread disorder. Commonly, the small nerves in the foot get damaged from ie tight shoes, and can also show changes on EMG.
Headache, difficulty concentrating, and fatigue can be a feature of a chronic headache disorder, and you may benefit from specific treatment for chronci headache from a headache specialist
Good luck
Lyme disease is relatively common in certain areas (such as New England), I believe Kentucky is not one of them. It usually presents initially with a rash, and headache from meningeal irriatation. Later on one can get peripheral nerve or nerve root problems, and very rarely, cognitive difficulties.
MS presents with dicrete episodes of a focal neurological complaint such as vision loss in one eye, weakness or clumisness on one side of the body etc, thats last between 1-3 weeks then goes away, and is associated with abnormal MRIs
Tingling in the foot is relatively non-specific without other neurological symptoms. An EMG study of the leg could ruleout a more widespread disorder. Commonly, the small nerves in the foot get damaged from ie tight shoes, and can also show changes on EMG.
Headache, difficulty concentrating, and fatigue can be a feature of a chronic headache disorder, and you may benefit from specific treatment for chronci headache from a headache specialist
Good luck
Do people with Lyme ever get a false negative test on both the ELISA and Western Blot. Well, yes, for a variety of reasons.
First of all, it's important to note that both of these tests are **indirect** tests. They don't actually detect bits of the organisms; they detect your immune system's response to the organism, which is the production of antibodies that are used to fight the bugs.
1. These tests were originally designed for the acute, early phase of the disease. Sometimes people who've had untreated Lyme for a very long time test negative because they're so sick, their immune system is no longer working well, so they aren't creating enough antibodies to detect them. But typically after they've received some antibiotics to get their germ load down, they'll test positive. That's why getting with a Lyme doctor is important. Regular docs may not know this.
2. Sometimes a person's immune system is so overloaded, that the antibodies are all tied up in "immune complexes." So the antibodies are there, but they don't show up on the tests. One researcher found that you can break up these complexes, and then the tests work, but that's not available to mere mortals.
3. So far they've found over 200 strains of the bacteria that causes Lyme. The FDA-approved tests only test for one strain (the B31 strain from Shelter Island, NY). You may have a strain that isn't detected by this very limted test. For example, I know of 2 people who've gotten Lyme from Italy. The test may not pick up the exotic strains. That's why the IGenex tests are better. They test for more strains.
4. There are different definitions of "positive." You should understand that the CDC's definition of a positive test is WAY more stringent than is needed for a clinical diagnosis. The CDC definition is "for surveillance purposes only." They want to count cases as Lyme spreads across America year by year in a highly consistent manner. IGenex's and NY state's definition are more rational; they say you only need a couple highly specific bands that are only lit up when a person has been exposed to the Lyme bacteria. Also, the CDC has removed the most specific antibody Western Blot bands (31kda and 34kda), because they were once used by the Lyme vaccine that was removed from the market. IGenex put them back in, because they're very informative. IF you have those band, you have Lyme.
First of all, it's important to note that both of these tests are **indirect** tests. They don't actually detect bits of the organisms; they detect your immune system's response to the organism, which is the production of antibodies that are used to fight the bugs.
1. These tests were originally designed for the acute, early phase of the disease. Sometimes people who've had untreated Lyme for a very long time test negative because they're so sick, their immune system is no longer working well, so they aren't creating enough antibodies to detect them. But typically after they've received some antibiotics to get their germ load down, they'll test positive. That's why getting with a Lyme doctor is important. Regular docs may not know this.
2. Sometimes a person's immune system is so overloaded, that the antibodies are all tied up in "immune complexes." So the antibodies are there, but they don't show up on the tests. One researcher found that you can break up these complexes, and then the tests work, but that's not available to mere mortals.
3. So far they've found over 200 strains of the bacteria that causes Lyme. The FDA-approved tests only test for one strain (the B31 strain from Shelter Island, NY). You may have a strain that isn't detected by this very limted test. For example, I know of 2 people who've gotten Lyme from Italy. The test may not pick up the exotic strains. That's why the IGenex tests are better. They test for more strains.
4. There are different definitions of "positive." You should understand that the CDC's definition of a positive test is WAY more stringent than is needed for a clinical diagnosis. The CDC definition is "for surveillance purposes only." They want to count cases as Lyme spreads across America year by year in a highly consistent manner. IGenex's and NY state's definition are more rational; they say you only need a couple highly specific bands that are only lit up when a person has been exposed to the Lyme bacteria. Also, the CDC has removed the most specific antibody Western Blot bands (31kda and 34kda), because they were once used by the Lyme vaccine that was removed from the market. IGenex put them back in, because they're very informative. IF you have those band, you have Lyme.
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