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.
Many people control the nausea by taking doxy with food.
200 mg per day is not recommended by ILADS or Dr. B.
Read information at ILADS.org
The guidelines are there plus much more information by experts in the Lyme community.
There's no agreed upon consensus aboout early,late Lyme. But if the bacteria can travel to the CNS/brain in a few hours/days then my interpretation of that is that anything after a week is late disseminated.
But that's just my interpretation based on many science articles written by researchers and doctors.
200 mg per day is not recommended by ILADS or Dr. B.
Read information at ILADS.org
The guidelines are there plus much more information by experts in the Lyme community.
There's no agreed upon consensus aboout early,late Lyme. But if the bacteria can travel to the CNS/brain in a few hours/days then my interpretation of that is that anything after a week is late disseminated.
But that's just my interpretation based on many science articles written by researchers and doctors.
Hi, glad you are starting treatment.
When I first started treatment with Doxy, I threw up a lot. I had ulcers so my doc gave me a special medicine that coats the stomach. You could try something like tums and see if it will work. I have heard of some natural anti nausea meds sold by Amazon.
I was bit 20 years before treatment so I am still treating. Some doctors call 3.5 months early treatment and others disagree. I do know that your dosage is less then when most LLMD give which is at least 200 MG Doxy 2 times a day.
Let us know if you have other questions. Feel better
When I first started treatment with Doxy, I threw up a lot. I had ulcers so my doc gave me a special medicine that coats the stomach. You could try something like tums and see if it will work. I have heard of some natural anti nausea meds sold by Amazon.
I was bit 20 years before treatment so I am still treating. Some doctors call 3.5 months early treatment and others disagree. I do know that your dosage is less then when most LLMD give which is at least 200 MG Doxy 2 times a day.
Let us know if you have other questions. Feel better
Hey everyone, so I had the western blot test done a couple of weeks ago and it came back positive! Whoop! I started abx yesterday, doxycycline 100 mg 2x per day. This infection has been hell and I'm so ready to be done with it. It's been about 3.5 months since I started having symptoms.. Does this count as "early" treatment? Am I likely to make a full recovery? How long did it take all of you to recover? These Abx are kind of harsh... I threw up this morning after taking a dose. Advice on keeping the pill down?
Really curious as to what you have. I have same symptoms and I forced my dr into lymes antibiotics with a negative test result . My numbness is turning into like fire under my skin in places now. tingling is spreading to different places.
(Elleon) I hope your doctor is also testing the urine for Wilson's Disease.
"Serum copper is paradoxically low but urine copper is elevated in Wilson's disease."
Wilson's org. says this about testing for it:
Opthalmalogic slit lamp examination for Kayser-Fleischer rings
Serum ceruloplasmin test
24-hour urine copper test
Liver biopsy for histology and histochemistry and copper quantification
Genetic testing, haplotype analysis for siblings and mutation analysis.
About doxy and liver------ yes, it is metabolized through the liver but liver function tests are a common test. People taking long term antibiotics usually have those done----- I know I've had my LFTs tested regularly----- and after years of doxy , no problems. The same for many other doxy users.
"Serum copper is paradoxically low but urine copper is elevated in Wilson's disease."
Wilson's org. says this about testing for it:
Opthalmalogic slit lamp examination for Kayser-Fleischer rings
Serum ceruloplasmin test
24-hour urine copper test
Liver biopsy for histology and histochemistry and copper quantification
Genetic testing, haplotype analysis for siblings and mutation analysis.
About doxy and liver------ yes, it is metabolized through the liver but liver function tests are a common test. People taking long term antibiotics usually have those done----- I know I've had my LFTs tested regularly----- and after years of doxy , no problems. The same for many other doxy users.
Did you ask your doctor about Wilson's Disease? It's rare but a lot of your symptoms fit... as do mine. Now I don't know if I have Lyme or that. I am getting blood work taken tomorrow to check my copper levels.
This is when your liver cannot get rid of copper toxins. So it builds up...starts in childhood but you usually start to see symptoms in your 20s (aka high liver enzymes). If enough copper builds up, it can travel to your brain and start causing neurological symptoms. I'm not saying you don't have Lyme...but I went to a gastroenterologist and he mentioned this Wilson's disease.
Honestly, the liver is nothing to mess around with so I would definitely think about going to a specialist about it first. Now I am worried since I am taking Doxy for Lyme, how much is it killing my liver?
This is when your liver cannot get rid of copper toxins. So it builds up...starts in childhood but you usually start to see symptoms in your 20s (aka high liver enzymes). If enough copper builds up, it can travel to your brain and start causing neurological symptoms. I'm not saying you don't have Lyme...but I went to a gastroenterologist and he mentioned this Wilson's disease.
Honestly, the liver is nothing to mess around with so I would definitely think about going to a specialist about it first. Now I am worried since I am taking Doxy for Lyme, how much is it killing my liver?
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?
Hm, thanks for the info. My doctor didn't do any additional testing regarding the high bilirubin that I'm aware of. However, I do know that when I was born, I had high bilirubin - had to be put under a special lamp or something for a few days. So I guess that might have something to do with it? I don't have blood test history, as I've never been sick or needed blood tests for anything (rarely visited doctors before this all happened).
Also, my doctor never ran a CBC or WBC... maybe he didn't think they were necessary. Should I ask for these tests to be ran?
Also, my doctor never ran a CBC or WBC... maybe he didn't think they were necessary. Should I ask for these tests to be ran?
I had muscle weakness when my Lyme came out big time. I was misdiagnosed with MS just to give you a heads up that Lyme mimics a lot of diseases.
Keep us updated.
Keep us updated.
That's a good approach -- staying as mellow as possible till there's more data. Take care, keep us posted --
Drew--- thanks for getting back to us.
I'd posted that that might be a reason for your high bilirubin results---- and your doctor seems to think so too. I just wonder why he believes that? Perhaps all your previous CBC tests have come back high---- which might lead him to think that. Do you keep copies of all your tests (I hope so). If you do just a quick look back in them would perhaps show several years worth of the bilirubin test getting slowly higher and higher---- which may point to Gilberts disease----- or an untended liver problem.
I wonder how it can be proven that it's Gilberts and not actual high bilirubin. A question for your doctor----- for I sure don't know! He may have already satisfied any concern he might have had.
Just found this---- the differential dx for Gilbert's
http://emedicine.medscape.com/article/178841-overview
Your doctor may have already performed a diff. dx. for Gilbert's, I hope
"Gilbert syndrome
As a rule, Gilbert syndrome can be diagnosed by a thorough history and physical examination and confirmed by standard blood tests. Laboratory results include the following:
Unconjugated hyperbilirubinemia noted on several occasions
Normal results from a complete blood count (CBC), reticulocyte count, and blood smear
Normal liver function test (LFT) results
An absence of other disease processes
Specialized tests that have occasionally been used to confirm a diagnosis of Gilbert syndrome include the following:
Fasting test
Nicotinic acid test
Phenobarbital test
Radiolabeled chromium test
Thin-layer chromatography
Drug clearance test
Polymerase chain reaction (PCR) assay
Percutaneous liver biopsy - Very rarely performed"
******************************
I'd posted that that might be a reason for your high bilirubin results---- and your doctor seems to think so too. I just wonder why he believes that? Perhaps all your previous CBC tests have come back high---- which might lead him to think that. Do you keep copies of all your tests (I hope so). If you do just a quick look back in them would perhaps show several years worth of the bilirubin test getting slowly higher and higher---- which may point to Gilberts disease----- or an untended liver problem.
I wonder how it can be proven that it's Gilberts and not actual high bilirubin. A question for your doctor----- for I sure don't know! He may have already satisfied any concern he might have had.
Just found this---- the differential dx for Gilbert's
http://emedicine.medscape.com/article/178841-overview
Your doctor may have already performed a diff. dx. for Gilbert's, I hope
"Gilbert syndrome
As a rule, Gilbert syndrome can be diagnosed by a thorough history and physical examination and confirmed by standard blood tests. Laboratory results include the following:
Unconjugated hyperbilirubinemia noted on several occasions
Normal results from a complete blood count (CBC), reticulocyte count, and blood smear
Normal liver function test (LFT) results
An absence of other disease processes
Specialized tests that have occasionally been used to confirm a diagnosis of Gilbert syndrome include the following:
Fasting test
Nicotinic acid test
Phenobarbital test
Radiolabeled chromium test
Thin-layer chromatography
Drug clearance test
Polymerase chain reaction (PCR) assay
Percutaneous liver biopsy - Very rarely performed"
******************************
Hey everyone,
Thanks again for all the help. I'm still waiting on my results from the Western Blot (blood drawn last Thursday). I'm still having strange symptoms, which now includes my right arm and shoulder feeling a little weak. I'm hoping we can get this figured out soon, especially if it does not turn out to be lyme.
As for the high bilirubin and albium, my doctor did not seem concerned - he said I might have Gilbert's Syndrome, which means I just produce higher levels of bilirubin naturally. I'll keep you all updated when I find out more info.
Thanks again for all the help. I'm still waiting on my results from the Western Blot (blood drawn last Thursday). I'm still having strange symptoms, which now includes my right arm and shoulder feeling a little weak. I'm hoping we can get this figured out soon, especially if it does not turn out to be lyme.
As for the high bilirubin and albium, my doctor did not seem concerned - he said I might have Gilbert's Syndrome, which means I just produce higher levels of bilirubin naturally. I'll keep you all updated when I find out more info.
Actually, the doc might mind a great deal, but has been outed accidentally or on websites where posters are not so cautious -- and once outed on the internet, it's there forever.
It's hard enough to find an LLMD in some states without giving the anti-LLMD troops a roadmap. Just sayin'.
I personally will continue to stay on the side of caution, in honor of the docs who follow their consciences and treat Lyme as the beast that it is.
It's hard enough to find an LLMD in some states without giving the anti-LLMD troops a roadmap. Just sayin'.
I personally will continue to stay on the side of caution, in honor of the docs who follow their consciences and treat Lyme as the beast that it is.
"I agree its been instilled in my head not to name doctors on forums and I can't just do it because of all the politics causing them problems."
Mojo,
I respect your decision to not post doctor's names.
I know that it's been instilled in people's heads to not post Lyme doctors names. If a doctor has expressly asked to not have his name put out publicly, that's something I'd never do.
If the doctor is truly 'hidden' and flies beneath the radar all the time then that's a good reason to not put his/her name out there.
But when simple Google search of "Lyme doctor in XXX (state)" brings up dozens of hits-----obviously that doctor doesn't mind.
Mojo,
I respect your decision to not post doctor's names.
I know that it's been instilled in people's heads to not post Lyme doctors names. If a doctor has expressly asked to not have his name put out publicly, that's something I'd never do.
If the doctor is truly 'hidden' and flies beneath the radar all the time then that's a good reason to not put his/her name out there.
But when simple Google search of "Lyme doctor in XXX (state)" brings up dozens of hits-----obviously that doctor doesn't mind.
I agree its been instilled in my head not to name doctors on forums and I can't just do it because of all the politics causing them problems.
Drew----- Just checking up to see how you're doing since we haven't heard back from you. Have you had that very high bilirubin and albumin checked out by a doctor (MD) yet?
I think that should be of prime importance because it might be serious.
About Dr. Marty Ross---- I checked further into his practice and his Skype consultations. They aren't inexpensive.
But, for someone living in OR and with no or very little access to a doctor who will treat Lyme disease, I think you should check a bit further before you pay that fee.
His One-on-One Skype consultations can be worth it for many people. But, as his web site states, he will give a treatment plan FOR USE IN CONJUNCTION WITH that person's doctor.
Well, that pretty much leaves out most of Lymies in OR because we can't get a doctor who will treat us. (grin)
But if you DO have a naturopath who will treat with long term abx---- then Dr. Ross' and his treatment plan may be helpful---AS LONG AS IT'S WITH ANTIBIOTICS.
But first, I hope you're being seen by a doctor for your high bilirubin etc.
I think that should be of prime importance because it might be serious.
About Dr. Marty Ross---- I checked further into his practice and his Skype consultations. They aren't inexpensive.
But, for someone living in OR and with no or very little access to a doctor who will treat Lyme disease, I think you should check a bit further before you pay that fee.
His One-on-One Skype consultations can be worth it for many people. But, as his web site states, he will give a treatment plan FOR USE IN CONJUNCTION WITH that person's doctor.
Well, that pretty much leaves out most of Lymies in OR because we can't get a doctor who will treat us. (grin)
But if you DO have a naturopath who will treat with long term abx---- then Dr. Ross' and his treatment plan may be helpful---AS LONG AS IT'S WITH ANTIBIOTICS.
But first, I hope you're being seen by a doctor for your high bilirubin etc.
Emily, you say above:
"You can also provide doctor names here, so long as you are not saying anything negative."
fyi, those of us in the Lyme world have a general policy of NOT naming doctors in public, because in quite a few states, MDs who are identified as treating Lyme disease in a way that runs contrary to the standards set by the Infectious Disease Society of America (IDSA) are too often brought up before local and state medical boards for diagnosing and treating Lyme in a manner more aggressive than the IDSA approach.
Some states have 'freedom of conscience' laws which permit MDs to practice as they see fit, but many states require MDs to practice according to specific approaches for diagnosis and treatment, on the theory that, for example, all is known that needs to be known about Lyme disease, and a few weeks of doxycycline will fix you right up; any remaining symptoms or suffering are not due to an incompletely or inadequately treated infection, but are instead the immune system's reaction to a now-vanished illness.
Unfortunately, politics has taken hold within the IDSA, and in some states, those suffering from Lyme are doomed to continue in that condition. Lyme is not an inconsequential disease, and it can even lead to death from, for example, cardiac involvement. Even when not risking life, Lyme often impairs significantly the ability to function day to day in the simplest of tasks, let along taking care of family and working.
On this site, we have an informal policy of NOT naming in public those MDs who risk their livelihoods to diagnose and treat us more aggressively, because if the Lyme specialists are cowed into silence, we will have no one to treat us.
There is a serious split in the medical community that is not anywhere near remedied, and we cannot risk losing the brave MDs who treat us as they, the MDs, believe is appropriate. I had Lyme and was virtually non-functioning in my daily life. I lost my job and was largely unable to care for my family. If I had not found a Lyme specialist who diagnosed me with Lyme and another infection also often carried by the Lyme ticks, I would not have gotten well.
The toll that Lyme takes on daily life is enormous, and we need all the Lyme specialists we can find. On behalf of all of us who have or have had or will have Lyme, please understand that we discourage naming Lyme specialists in the open here for a very good reason. We may share the names of our Lyme docs in private messages, but not in the open.
Yes, this is totally unlike any other medical situation in the country, but it is what it is, at least for the foreseeable future, until the senior MDs who have staked their reputations on Lyme being 'hard to get and easy to cure' have retired and their successors are able to think for themselves.
There is an excellent documentary called 'Under Our Skin' that is available online, I believe, which explains what life is often like for those of us with Lyme. If you are interested, I recommend it. We do not all end up as ill as some of those shown in the film, but we are all at some level debilitated and unable to participate in family and work life.
Thank you for your understanding.
"You can also provide doctor names here, so long as you are not saying anything negative."
fyi, those of us in the Lyme world have a general policy of NOT naming doctors in public, because in quite a few states, MDs who are identified as treating Lyme disease in a way that runs contrary to the standards set by the Infectious Disease Society of America (IDSA) are too often brought up before local and state medical boards for diagnosing and treating Lyme in a manner more aggressive than the IDSA approach.
Some states have 'freedom of conscience' laws which permit MDs to practice as they see fit, but many states require MDs to practice according to specific approaches for diagnosis and treatment, on the theory that, for example, all is known that needs to be known about Lyme disease, and a few weeks of doxycycline will fix you right up; any remaining symptoms or suffering are not due to an incompletely or inadequately treated infection, but are instead the immune system's reaction to a now-vanished illness.
Unfortunately, politics has taken hold within the IDSA, and in some states, those suffering from Lyme are doomed to continue in that condition. Lyme is not an inconsequential disease, and it can even lead to death from, for example, cardiac involvement. Even when not risking life, Lyme often impairs significantly the ability to function day to day in the simplest of tasks, let along taking care of family and working.
On this site, we have an informal policy of NOT naming in public those MDs who risk their livelihoods to diagnose and treat us more aggressively, because if the Lyme specialists are cowed into silence, we will have no one to treat us.
There is a serious split in the medical community that is not anywhere near remedied, and we cannot risk losing the brave MDs who treat us as they, the MDs, believe is appropriate. I had Lyme and was virtually non-functioning in my daily life. I lost my job and was largely unable to care for my family. If I had not found a Lyme specialist who diagnosed me with Lyme and another infection also often carried by the Lyme ticks, I would not have gotten well.
The toll that Lyme takes on daily life is enormous, and we need all the Lyme specialists we can find. On behalf of all of us who have or have had or will have Lyme, please understand that we discourage naming Lyme specialists in the open here for a very good reason. We may share the names of our Lyme docs in private messages, but not in the open.
Yes, this is totally unlike any other medical situation in the country, but it is what it is, at least for the foreseeable future, until the senior MDs who have staked their reputations on Lyme being 'hard to get and easy to cure' have retired and their successors are able to think for themselves.
There is an excellent documentary called 'Under Our Skin' that is available online, I believe, which explains what life is often like for those of us with Lyme. If you are interested, I recommend it. We do not all end up as ill as some of those shown in the film, but we are all at some level debilitated and unable to participate in family and work life.
Thank you for your understanding.
Hi everyone -
I see that Drew hasn't posted again, but I wanted to make a couple of points.
Until you get your full results from your blood work, please be very careful with taking ANYTHING right now, as some of your levels are really high. Results like this could indicate a lot of things other than Lyme, and some are potentially very serious.
I hope by now you have followed up with your doctor and gotten some results, and are moving forward with a diagnosis and/or treatment plan.
In the meantime, let's all be really careful with suggesting ANYTHING to someone without a diagnosis, including natural supplements.
You can also provide doctor names here, so long as you are not saying anything negative.
Thanks,
Emily
I see that Drew hasn't posted again, but I wanted to make a couple of points.
Until you get your full results from your blood work, please be very careful with taking ANYTHING right now, as some of your levels are really high. Results like this could indicate a lot of things other than Lyme, and some are potentially very serious.
I hope by now you have followed up with your doctor and gotten some results, and are moving forward with a diagnosis and/or treatment plan.
In the meantime, let's all be really careful with suggesting ANYTHING to someone without a diagnosis, including natural supplements.
You can also provide doctor names here, so long as you are not saying anything negative.
Thanks,
Emily
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
