Aa
Think I have Lyme
Hey everyone,
I wanted to let you all know what I've been going through and see if anyone can identify. I think I have Lyme disease, and I'm going to schedule an appt with a naturopath tomorrow. I'm really worried, especially since my symptoms appear to be more advanced. Here's the breakdown:
Started with intense arthritis in both wrists, mellowed out and spread to forearms. Had my mind blown as to why this was happening.
For a couple weeks, I just dealt with the pain in my forearms/wrists, and the tingling. I saw a chiropractic, but a cervical MRI showed nothing wrong.
About 3 weeks after the first onset of symptoms, one of my calves had about a 6 hour spasm - the day after, all my symptoms went away for about 3 days, although i was still overall a little out of energy.
The 4th week (this past week), I've been feeling strong flu like symptoms - chills at night, low energy, headache. The other symptoms came back with a vengeance this time. Halfway through the week, I started having memory problems and fatigue a couple hours a day. I was also really thirsty, and peeing constantly (I don't have diabetes). On Friday, I was really struggling to stay on top of my work and think straight. Also started having panic attacks/anxiety. That night, I couldn't sleep because both my calves were spasming, and it was very uncomfortable. I've been having panic attacks throughout the day, and sometimes not thinking clearly. One side of my jaw, especially my teeth, feels numb.
I went to the ER on Saturday night because I was freaking out, but they told me "we don't have lyme here" (I live in Portland, OR), and they sent me home. The research I did says otherwise, although it doesnt seem to be very prevalent around here.
Until I can see my naturopath, does anyone have any advice dealing with symptoms? the muscle cramping, headaches, the mental slowness? I'm going to try taking magnesium supplements and Epsom Salt to see if it helps. Thanks in advance for any advice.
I wanted to let you all know what I've been going through and see if anyone can identify. I think I have Lyme disease, and I'm going to schedule an appt with a naturopath tomorrow. I'm really worried, especially since my symptoms appear to be more advanced. Here's the breakdown:
Started with intense arthritis in both wrists, mellowed out and spread to forearms. Had my mind blown as to why this was happening.
For a couple weeks, I just dealt with the pain in my forearms/wrists, and the tingling. I saw a chiropractic, but a cervical MRI showed nothing wrong.
About 3 weeks after the first onset of symptoms, one of my calves had about a 6 hour spasm - the day after, all my symptoms went away for about 3 days, although i was still overall a little out of energy.
The 4th week (this past week), I've been feeling strong flu like symptoms - chills at night, low energy, headache. The other symptoms came back with a vengeance this time. Halfway through the week, I started having memory problems and fatigue a couple hours a day. I was also really thirsty, and peeing constantly (I don't have diabetes). On Friday, I was really struggling to stay on top of my work and think straight. Also started having panic attacks/anxiety. That night, I couldn't sleep because both my calves were spasming, and it was very uncomfortable. I've been having panic attacks throughout the day, and sometimes not thinking clearly. One side of my jaw, especially my teeth, feels numb.
I went to the ER on Saturday night because I was freaking out, but they told me "we don't have lyme here" (I live in Portland, OR), and they sent me home. The research I did says otherwise, although it doesnt seem to be very prevalent around here.
Until I can see my naturopath, does anyone have any advice dealing with symptoms? the muscle cramping, headaches, the mental slowness? I'm going to try taking magnesium supplements and Epsom Salt to see if it helps. Thanks in advance for any advice.
Besides being an LLMD, my doctor is a family practice doc (LLMD can be from any specialty) so that is probably why she takes all the CBC, WBC etc,
Most Commonly Reported Symptoms
From the following, here are the most common symptoms:
Frequently Reported: fatigue, tiredness, brain fog, headaches, poor memory, dizziness, depression, irritability, anxiety, nausea, loss of appetite, irritable bowel syndrome (IBS), stomach pain & cramping, liver/gallbladder pain, abdominal pain, tremors, itchiness, jaundice
Commonly Reported: insomnia, difficulty concentrating, panic attacks, hypoglycemic reaction to foods, intolerance to carbs, food intolerances, alcohol intolerance, loose stools / diarrhea, abdominal bloating or swelling, breathlessness or labored breathing, heart palpitations, aching muscles / body ache, joint pain, numbness & tingling, weakness, chemical sensitivity, weight loss, lump in the throat, feeling constantly sick
Sometimes Reported: difficulty finding the right words, feeling drunk, vomiting, intolerance to fatty foods, strong hangovers, acid reflux, excessive thirst, chest pain, muscle twitches, cold hands and feet, environmental allergies, swollen lymph nodes, toxic feeling, bitter or metallic taste in the mouth, eye pain
Occasionally Reported: waking panic attack, mood swings, feeling antisocial, intolerance to drugs, constipation, pale stools, indigestion, back pain, dry skin, feeling cold, low body temperature, pale skin, low weight, night sweats, excessive sweating, poor immune system, sore or dry throat, light sensitivity, bloodshot eyes
http://www.gilbertssyndrome.com/symptoms.php
[my note: If those symptoms were posted on a Lyme board nothing much would have to be taken off or added it. Sigh. I certainly can't say that Gilbert's syndrome is Lyme or that Lyme is Gilbert's syndrome!
What a tangled web.]
From the following, here are the most common symptoms:
Frequently Reported: fatigue, tiredness, brain fog, headaches, poor memory, dizziness, depression, irritability, anxiety, nausea, loss of appetite, irritable bowel syndrome (IBS), stomach pain & cramping, liver/gallbladder pain, abdominal pain, tremors, itchiness, jaundice
Commonly Reported: insomnia, difficulty concentrating, panic attacks, hypoglycemic reaction to foods, intolerance to carbs, food intolerances, alcohol intolerance, loose stools / diarrhea, abdominal bloating or swelling, breathlessness or labored breathing, heart palpitations, aching muscles / body ache, joint pain, numbness & tingling, weakness, chemical sensitivity, weight loss, lump in the throat, feeling constantly sick
Sometimes Reported: difficulty finding the right words, feeling drunk, vomiting, intolerance to fatty foods, strong hangovers, acid reflux, excessive thirst, chest pain, muscle twitches, cold hands and feet, environmental allergies, swollen lymph nodes, toxic feeling, bitter or metallic taste in the mouth, eye pain
Occasionally Reported: waking panic attack, mood swings, feeling antisocial, intolerance to drugs, constipation, pale stools, indigestion, back pain, dry skin, feeling cold, low body temperature, pale skin, low weight, night sweats, excessive sweating, poor immune system, sore or dry throat, light sensitivity, bloodshot eyes
http://www.gilbertssyndrome.com/symptoms.php
[my note: If those symptoms were posted on a Lyme board nothing much would have to be taken off or added it. Sigh. I certainly can't say that Gilbert's syndrome is Lyme or that Lyme is Gilbert's syndrome!
What a tangled web.]
Well, if you were born with high bilirubin it's sounds as if you DO/MAY have Gilbert's syndrome. And if that's correct there's nothing that can be done about it and that it 'usually' doesn't mean anything. (?)
But I went looking and a lot of people with Lyme do say they have it. I can't make a case for Lyme and Gilbert's just on the basis of several people having it AND Lyme----- but it's interesting.
Wiki states:
"Gilbert's syndrome often shortened to GS, also called Gilbert–Meulengracht syndrome, is the most common hereditary cause of increased bilirubin and is found in up to 5% of the population (though some gastroenterologists maintain that it is closer to 10%). A major characteristic is jaundice, caused by elevated levels of unconjugated bilirubin in the bloodstream (hyperbilirubinemia)."
However! One site states:
Testing for Gilbert's Syndrome
Elevated bilirubin levels are not enough to diagnose GS. The two primary reasons they can be elevated are from liver problems or blood problems (as in anemia, where too much bilirubin is produced). There are genetic tests for Gilbert's Syndrome, but it might be hard to get covered by insurance.
The best route is to be tested for liver problems, blood problems, and bilirubin levels. The liver test is called a 'liver function test'. For the bilirubin test, have your total bilirubin, conjugated bilirubin, and unconjugated bilirubin levels tested. When total bilirubin is elevated, unconjugated bilirubin is making up a large majority of your total bilirubin count, and no other liver or blood problems are apparent, Gilbert's Syndrome is properly diagnosed."
That site has tons of information about Gilbert's but I can't find out (yet) who runs it and how valid it is. But since the person who runs it posts a lot of links to valid sites I think it might be a good place to find some answers.
I don't know if his/her conclusions about some of that information is correct though. That's my disclaimer and I'm sticking with it. (grin)
http://www.gilbertssyndrome.com/
If it were me (and it's not!) I would have those other tests performed to confirm that it was truly Gilbert's and not some untended to condition.
Back to your CBC tests----- I can't imagine a doctor NOT having that performed on a patient. Maybe check with him? Or was it a naturopath? I also can't imagine an ND not doing a CBC----- but NDs can be good or not so good. I prefer the good kind.
WBC? White blood count? Is that of some significance? Maybe I missed where your said your was out of whack?
But the bottom line, about Lyme, ------ in OR you won't find an MD who will treat Lyme disease. Some NDs MAY and they MAY treat it correctly with long term abx------IF YOU DO HAVE LYME.
Which we and you don't know yet.
But I went looking and a lot of people with Lyme do say they have it. I can't make a case for Lyme and Gilbert's just on the basis of several people having it AND Lyme----- but it's interesting.
Wiki states:
"Gilbert's syndrome often shortened to GS, also called Gilbert–Meulengracht syndrome, is the most common hereditary cause of increased bilirubin and is found in up to 5% of the population (though some gastroenterologists maintain that it is closer to 10%). A major characteristic is jaundice, caused by elevated levels of unconjugated bilirubin in the bloodstream (hyperbilirubinemia)."
However! One site states:
Testing for Gilbert's Syndrome
Elevated bilirubin levels are not enough to diagnose GS. The two primary reasons they can be elevated are from liver problems or blood problems (as in anemia, where too much bilirubin is produced). There are genetic tests for Gilbert's Syndrome, but it might be hard to get covered by insurance.
The best route is to be tested for liver problems, blood problems, and bilirubin levels. The liver test is called a 'liver function test'. For the bilirubin test, have your total bilirubin, conjugated bilirubin, and unconjugated bilirubin levels tested. When total bilirubin is elevated, unconjugated bilirubin is making up a large majority of your total bilirubin count, and no other liver or blood problems are apparent, Gilbert's Syndrome is properly diagnosed."
That site has tons of information about Gilbert's but I can't find out (yet) who runs it and how valid it is. But since the person who runs it posts a lot of links to valid sites I think it might be a good place to find some answers.
I don't know if his/her conclusions about some of that information is correct though. That's my disclaimer and I'm sticking with it. (grin)
http://www.gilbertssyndrome.com/
If it were me (and it's not!) I would have those other tests performed to confirm that it was truly Gilbert's and not some untended to condition.
Back to your CBC tests----- I can't imagine a doctor NOT having that performed on a patient. Maybe check with him? Or was it a naturopath? I also can't imagine an ND not doing a CBC----- but NDs can be good or not so good. I prefer the good kind.
WBC? White blood count? Is that of some significance? Maybe I missed where your said your was out of whack?
But the bottom line, about Lyme, ------ in OR you won't find an MD who will treat Lyme disease. Some NDs MAY and they MAY treat it correctly with long term abx------IF YOU DO HAVE LYME.
Which we and you don't know yet.
"Also, my doctor never ran a CBC or WBC... maybe he didn't think they were necessary. Should I ask for these tests ---"
The problem is that even if you talk the doc into ordering the tests, the doc may not know how to read the results properly.
Not all docs believe Lyme is serious or even found throughout the country, so even a positive test may well not get you a diagnosis and treatment.
It's less an informational issue for the docs than a mindset issue: nonLLMDs think Lyme is rare, hard to get, and easy to cure, and they often don't consider co-infections (separate diseases that the ticks often carry that need separate testing and treatment from Lyme).
Other than *having* Lyme, the hardest thing is figuring out why the medical profession is in such a mess over it. I was very ill and with no idea why -- saw 20 MDs before one finally ran a Lyme test on me, because she had run out of all other ideas. This was one of the less reliable Lyme tests that too often comes back false negative (that is, the test says, 'no Lyme' but you really do have it).
This doc assured me I 'could not possibly have Lyme' because I was 'not sick enough' -- to quote her: "I have patients with Lyme, and they are all near death." So, to get a Lyme diagnosis from this doc you had to be dead or on the way to dead. Insanity.
The point of this lurid tale is that non-Lyme specialist docs simply don't recognize Lyme when they see it, or recognize it but dismiss or undertreat it. That's why not just any doc will do when it comes to Lyme: this terrible split in the medical community gets in the way of proper diagnosis and adequate treatment.
About your muscle symptoms, you could try taking magnesium (Mg) supplements -- any kind ending in '-ate' is the most absorbable, so I read. Mg malate, orotate, aspartate, citrate, etc. I have read that Mg is already low in the American diet for several reasons, and then the Lyme bacteria use up Mg in their reproductive cycle, so you can end up with a Mg deficiency. Twitching and muscle cramps can be a sign of Mg deficiency.
From what I've read and docs have told me, you will know you have taken too much if you get diarrhea. If that happen, then back off the dose a bit. I still take 200mg twice a day and have no problems with it, and I'm a lightweight when it comes to any kind of meds.
I've also read in several places that the 'CalMag' combo of calcium and magnesium is not particularly good, dunno why -- maybe the chemical makeup of the ingredients that particular brand uses isn't easily absorbed.
If you take the Mg, be sure to tell your docs when you see them that you are taking it, so they can factor that in to your symptom array, and tell them if and how you feel better since you started taking the Mg.
You ask mojo above if her symptoms were consistent and constant -- everyone is a bit different, which is partly what confuses the docs: all the different presentations of symptoms and history. I didn't have anything specific, but felt 24/7 like I had a hangover and the flu at the same time, for over a year until I was diagnosed and treated.
Co-infections that the Lyme ticks also carry about half the time confuse the diagnostic picture, because these 'bonus' diseases each have their own set of symptoms, and everyone's body reacts differently. No wonder the docs are confused.
If you had each of us here list our symptoms when were ill but not diagnosed, I suspect we would not have more than half our symptoms in common with each other, and maybe less. The mix of infections with each of our different immune systems creates chaos. That's why a Lyme specialist is so important.
My symptoms were consistent day to day -- like having a bad case of the flu AND a bad hangover at the same time. For months. I never had a good day. I had a lot of brain fog and less physical pain, while others are the opposite. Tricky Lyme.
Also know that Lyme and co-infections can give varying symptoms that seem to rise and fall with the seasons in some people, or will cycle every month or so, due to the bacterial reproductive cycle. Also some women report symptoms getting worse around their period, maybe due to the infections messing with the endocrine (hormonal) system. Dunno.
So there's no slam dunk set of symptoms -- that's why a Lyme doc is so important.
Take care, take heart -- and find a good doc! And keep us posted.
The problem is that even if you talk the doc into ordering the tests, the doc may not know how to read the results properly.
Not all docs believe Lyme is serious or even found throughout the country, so even a positive test may well not get you a diagnosis and treatment.
It's less an informational issue for the docs than a mindset issue: nonLLMDs think Lyme is rare, hard to get, and easy to cure, and they often don't consider co-infections (separate diseases that the ticks often carry that need separate testing and treatment from Lyme).
Other than *having* Lyme, the hardest thing is figuring out why the medical profession is in such a mess over it. I was very ill and with no idea why -- saw 20 MDs before one finally ran a Lyme test on me, because she had run out of all other ideas. This was one of the less reliable Lyme tests that too often comes back false negative (that is, the test says, 'no Lyme' but you really do have it).
This doc assured me I 'could not possibly have Lyme' because I was 'not sick enough' -- to quote her: "I have patients with Lyme, and they are all near death." So, to get a Lyme diagnosis from this doc you had to be dead or on the way to dead. Insanity.
The point of this lurid tale is that non-Lyme specialist docs simply don't recognize Lyme when they see it, or recognize it but dismiss or undertreat it. That's why not just any doc will do when it comes to Lyme: this terrible split in the medical community gets in the way of proper diagnosis and adequate treatment.
About your muscle symptoms, you could try taking magnesium (Mg) supplements -- any kind ending in '-ate' is the most absorbable, so I read. Mg malate, orotate, aspartate, citrate, etc. I have read that Mg is already low in the American diet for several reasons, and then the Lyme bacteria use up Mg in their reproductive cycle, so you can end up with a Mg deficiency. Twitching and muscle cramps can be a sign of Mg deficiency.
From what I've read and docs have told me, you will know you have taken too much if you get diarrhea. If that happen, then back off the dose a bit. I still take 200mg twice a day and have no problems with it, and I'm a lightweight when it comes to any kind of meds.
I've also read in several places that the 'CalMag' combo of calcium and magnesium is not particularly good, dunno why -- maybe the chemical makeup of the ingredients that particular brand uses isn't easily absorbed.
If you take the Mg, be sure to tell your docs when you see them that you are taking it, so they can factor that in to your symptom array, and tell them if and how you feel better since you started taking the Mg.
You ask mojo above if her symptoms were consistent and constant -- everyone is a bit different, which is partly what confuses the docs: all the different presentations of symptoms and history. I didn't have anything specific, but felt 24/7 like I had a hangover and the flu at the same time, for over a year until I was diagnosed and treated.
Co-infections that the Lyme ticks also carry about half the time confuse the diagnostic picture, because these 'bonus' diseases each have their own set of symptoms, and everyone's body reacts differently. No wonder the docs are confused.
If you had each of us here list our symptoms when were ill but not diagnosed, I suspect we would not have more than half our symptoms in common with each other, and maybe less. The mix of infections with each of our different immune systems creates chaos. That's why a Lyme specialist is so important.
My symptoms were consistent day to day -- like having a bad case of the flu AND a bad hangover at the same time. For months. I never had a good day. I had a lot of brain fog and less physical pain, while others are the opposite. Tricky Lyme.
Also know that Lyme and co-infections can give varying symptoms that seem to rise and fall with the seasons in some people, or will cycle every month or so, due to the bacterial reproductive cycle. Also some women report symptoms getting worse around their period, maybe due to the infections messing with the endocrine (hormonal) system. Dunno.
So there's no slam dunk set of symptoms -- that's why a Lyme doc is so important.
Take care, take heart -- and find a good doc! And keep us posted.
I had muscle weakness on and off in my arms/hands and legs.
The calf twitching and tightness could Lyme. I am sure you have tried stretching it?
When mine all came out it was not constant or consistent. One day I couldn't open the fridge and the next day I could so I was all over the place. That doesn't mean it would happen to you like that because everyone is so different when they get Lyme and co's.
Usually doctors will run a CBC and WBC to see if your symptom is fighting something. It may not hurt to ask for one although that won't prove you have Lyme.
The calf twitching and tightness could Lyme. I am sure you have tried stretching it?
When mine all came out it was not constant or consistent. One day I couldn't open the fridge and the next day I could so I was all over the place. That doesn't mean it would happen to you like that because everyone is so different when they get Lyme and co's.
Usually doctors will run a CBC and WBC to see if your symptom is fighting something. It may not hurt to ask for one although that won't prove you have Lyme.
So, did you have muscle weakness all over? The thing that bothers me the most right now is the constant calf twitching/tightness in both my legs. Could this be a lyme symptom? It's been fairly constant for the past week or so. I can still walk fine and everything, but my calves feel tight and it's uncomfortable.
Also, when you're lyme came out big time, were your symptoms fairly constant/consistent?
Also, when you're lyme came out big time, were your symptoms fairly constant/consistent?
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