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Should Lyme Show In CSF?
Hi Everyone,
Ive been having problems since last april now, and the doctors still haven't been able to get a definate answer.
Im seeing a neurologist and have been told 'possible ms' though every test I have had, has come back negative.
MRI's of the Brain, with and without contrast neg. Spinal Tap, no bands and nothing else that I was told.
I am up to just recently have a MRI of my spine without contrast. I have degenerative disc disease, a few disc bulges and what 'appears to be a benign hemangioma.'
My symptoms are consistant with a mixture of MS, Lyme and Lupus.
I had both test for Lyme and ANA done previously and both were negative. My neuro ordered the Lyme with the CSF and as far as I know it was negative. She has also retested the ANA and Im still waiting for the results.
My main question is, if I actually did have Lyme would it show up in the CSF for certain? And if not, how does one get a positive test if both the Titer is negative along with the CSF?
Is there reasons as to why you wouldnt get a positive?
Thank You for reading and your replies.
xLx
Ive been having problems since last april now, and the doctors still haven't been able to get a definate answer.
Im seeing a neurologist and have been told 'possible ms' though every test I have had, has come back negative.
MRI's of the Brain, with and without contrast neg. Spinal Tap, no bands and nothing else that I was told.
I am up to just recently have a MRI of my spine without contrast. I have degenerative disc disease, a few disc bulges and what 'appears to be a benign hemangioma.'
My symptoms are consistant with a mixture of MS, Lyme and Lupus.
I had both test for Lyme and ANA done previously and both were negative. My neuro ordered the Lyme with the CSF and as far as I know it was negative. She has also retested the ANA and Im still waiting for the results.
My main question is, if I actually did have Lyme would it show up in the CSF for certain? And if not, how does one get a positive test if both the Titer is negative along with the CSF?
Is there reasons as to why you wouldnt get a positive?
Thank You for reading and your replies.
xLx
The reason Lyme may not show up on a LP is cause the bacteria is a genious at hiding itself so it will not be discovered.. It does this by hiding in your white blood cells...So at the time you have the LP,( and they are clever at hiding) it would not show up in yor LP..
I am a Registered Nurse in Emergency Medicine with Lyme It is probably a little bit easier for me to understand the medical terms.
My first western blot was negative the second was positive only 1 month apart the second showed positive igg and igm 23,39,41
If you have any questions I could help with Please e-mail me ***@****. God Bless all of you!!! Cheryl
I am a Registered Nurse in Emergency Medicine with Lyme It is probably a little bit easier for me to understand the medical terms.
My first western blot was negative the second was positive only 1 month apart the second showed positive igg and igm 23,39,41
If you have any questions I could help with Please e-mail me ***@****. God Bless all of you!!! Cheryl
The reason Lyme may not show up on a LP is cause the bacteria is a genious at hiding itself so it will not be discovered.. It does this by hiding in your white blood cells...So at the time you have the LP,( and they are clever at hiding) it would not show up in yor LP..
I am a Registered Nurse in Emergency Medicine with Lyme It is probably a little bit easier for me to understand the medical terms.
My first western blot was negative the second was positive only 1 month apart the second showed positive igg and igm 23,39,41
If you have any questions I could help with Please e-mail me ***@****. God Bless all of you!!! Cheryl
I am a Registered Nurse in Emergency Medicine with Lyme It is probably a little bit easier for me to understand the medical terms.
My first western blot was negative the second was positive only 1 month apart the second showed positive igg and igm 23,39,41
If you have any questions I could help with Please e-mail me ***@****. God Bless all of you!!! Cheryl
Good luck with the appointment, let us know how you do.
Infectious disease (ID) docs are not big believers in Lyme, but it's a place to start.
Infectious disease (ID) docs are not big believers in Lyme, but it's a place to start.
This is all so strange to read. I actually suffered thru a neck fusion followed by a bad neck injury just 4 months later. After 8 months I have all the signs of Arthritis (test neg.) Nueropathy, and CRPS. Now the pain management doc ordered Western Blot and called me in to say it's possitive on 3 levels. (3 levels, circles, rings?) I am going to see an Infectious Disease doc next week. I think we will get along because we both hunt with bird dogs and ticks are common around here. Symtoms are electrical sensations in my hands, numbness in hands, severe cold/ blueish hands, sporadic swelling in most joints with redness and warmth, headache, along with muscle spams, tremors, and shooting/ stabbing neck pain along with watery dry eyes that turns out to be a bacterial infection? Started antibiotics immediately and after a week the only thing difference is no swelling but sometimes that goes 10 days or more between episodes. We will see...
I looked at the photos, but can't make any sensible comments ... I never had a rash, and only know what I've seen online. If you see a rash, then there's a rash, but if you don't see one, it doesn't mean you don't have Lyme.
Actually I did get positive Lyme tests -- first from a kindly endocrinologist who dismissed the positive result as an error, on the basis that I wasn't sick enough to have Lyme (and mind you, I was pretty sick). The comment was: "I have patients with Lyme, and they are all near death." Therefore I could not have Lyme. Eventually I found an LLMD, and was positive on those (Western blot and ELISA) tests too, which surprised the doc, because a while after infection, the body stops making antibodies to the Lyme bacteria, and the tests measure antibodies. Those were just the basic, not-IGeneX tests. Everyone is different, tho.
Along the way through 20-odd docs to finding an LLMD, I saw an ID doc, and he didn't even run any tests, just showed me the door ... and I never mentioned Lyme, because I had no idea that I might have it. I just knew I was terribly ill. All ID docs will say they treat Lyme, and they do, usually according to the (outdated) standards set by their organization, the Infectious Disease Society of America (IDSA). These docs truly truly truly believe they are doing the right thing, or they wouldn't be doing it. Some of them, who have inquiring minds, may have looked into the more open-minded ILADS positions and recommendations, and may quietly adhere to some of the ILADS approaches to diagnosis and treatment.
All docs believe they are doing the right thing, even if they are doing the wrong thing. They all take an oath to "do no harm" when they become MDs -- the Hippocratic oath. Non-LLMDs truly believe that the LLMD/ILADS approach to treating Lyme and its coinfections ARE doing harm by overdiagnosing and overtreating patients, which is why IDSA docs hold LLMDs (and often the LLMDs' patients) in such contempt: they believe wrong is being done, and malpractice is being committed.
If you ask an ID doc if s/he treats Lyme, the answer will always be 'yes.' The difference is in how they diagnose and treat it. And you won't know that till you see the doc. So go to the appointment, do your best to communicate your symptoms and history, and see what happens. Then figure out what to do next, whether it's seeing that same doc again or going somewhere else.
Let us know what happens and what the doc says, okay? Hang in there -- you're doing all you can, so keep plowing ahead.
Actually I did get positive Lyme tests -- first from a kindly endocrinologist who dismissed the positive result as an error, on the basis that I wasn't sick enough to have Lyme (and mind you, I was pretty sick). The comment was: "I have patients with Lyme, and they are all near death." Therefore I could not have Lyme. Eventually I found an LLMD, and was positive on those (Western blot and ELISA) tests too, which surprised the doc, because a while after infection, the body stops making antibodies to the Lyme bacteria, and the tests measure antibodies. Those were just the basic, not-IGeneX tests. Everyone is different, tho.
Along the way through 20-odd docs to finding an LLMD, I saw an ID doc, and he didn't even run any tests, just showed me the door ... and I never mentioned Lyme, because I had no idea that I might have it. I just knew I was terribly ill. All ID docs will say they treat Lyme, and they do, usually according to the (outdated) standards set by their organization, the Infectious Disease Society of America (IDSA). These docs truly truly truly believe they are doing the right thing, or they wouldn't be doing it. Some of them, who have inquiring minds, may have looked into the more open-minded ILADS positions and recommendations, and may quietly adhere to some of the ILADS approaches to diagnosis and treatment.
All docs believe they are doing the right thing, even if they are doing the wrong thing. They all take an oath to "do no harm" when they become MDs -- the Hippocratic oath. Non-LLMDs truly believe that the LLMD/ILADS approach to treating Lyme and its coinfections ARE doing harm by overdiagnosing and overtreating patients, which is why IDSA docs hold LLMDs (and often the LLMDs' patients) in such contempt: they believe wrong is being done, and malpractice is being committed.
If you ask an ID doc if s/he treats Lyme, the answer will always be 'yes.' The difference is in how they diagnose and treat it. And you won't know that till you see the doc. So go to the appointment, do your best to communicate your symptoms and history, and see what happens. Then figure out what to do next, whether it's seeing that same doc again or going somewhere else.
Let us know what happens and what the doc says, okay? Hang in there -- you're doing all you can, so keep plowing ahead.
Two things: First of all, like you I am not yet diagnosed but am suffering. JackieCalif suggested I get the book "Cure Unknown" written by a woman whose entire family got Lyme. That book was a real eye-opener!! In it I read how the medical establishment has so tightened the requirements a patient has to fulfill for an "official Lyme diagnosis" that it effectively prevents most people having Lyme disease from being officially diagnosed with Lyme. That means their insurance companies won't have to pay for any Lyme treatment since those people will not have official diagnoses of Lyme. Throughout that book, the Infectious Disease sector of medicine seems to be the most resistant to Lyme diagnosis!! It's OK to consult with the ID, but don't spend too much time trying for an "official diagnosis". Like JackieCalif, I strongly suggest that you find a Lyme-literate doctor! Like you, I was actually referred (by my primary physician due to a positive Lyme test) to an "infectious disease specialist" and that ID "doctor/bozo" callously (and quite incorrectly) told me that I could not possibly have Lyme because, in his words, "Lyme is not a chronic disease." For that incorrect pronouncement he charged my insurance company $400!!! In my opinion, ID doctors have a very bad track record on diagnosing Lyme indeed!! In "Cure Unknown" the author mentions the "Lyme Disease Diagnostic Center" which was known for "sending patients to shrinks and dismissing them in droves." The author states the doctors at the Lyme Diagnostic Center were "the only doctors at the hospital NOT treating Lyme disease."
Secondly, regarding your initial question about whether or not Lyme would show up in CSF fluid, I remember reading in Cure Unknown (but now cannot find it) a statement that once it was discovered that a certain substance rarely, if ever, showed up in CSF fluid of a Lyme patient, then that was the very substance they ended up requiring to be present in CSF for an "official Lyme diagnosis." Unbelievable!!
You can see that neither JackieCalif nor Wonko have received official Lyme diagnoses! They got treatment without an official diagnosis and feel better. It is possible you may actually be able to get an official diagnosis from an ID doctor only because you have, in the ID opinion, done things right: You found ticks present, found a bullseye rash (make sure you photograph it so they can't deny it), caught new infection (superimposed on old) early in the game. You may be one of the few lucky ones having Lyme and finding it in just "the right way" as ID doctors feel it should always present. So you may be able to get an official diagnosis which would force your insurance company to have to pay for your treatment which is good! In the book, someone like you with a recent infection who intervened early in the Lyme presentation was actually able to be cured of the Lyme with only 28 days of antibiotics. However, others with textbook Lyme presentations have been denied diagnoses. I guess, in your case, official diagnosis is worth a try. Good luck with the ID doc. Hope your experience is better than what many of us have had with ID docs.
However, if you don't get your official diagnosis from the ID doc, then move on to an LLMD!
Good luck!!
WAF
Secondly, regarding your initial question about whether or not Lyme would show up in CSF fluid, I remember reading in Cure Unknown (but now cannot find it) a statement that once it was discovered that a certain substance rarely, if ever, showed up in CSF fluid of a Lyme patient, then that was the very substance they ended up requiring to be present in CSF for an "official Lyme diagnosis." Unbelievable!!
You can see that neither JackieCalif nor Wonko have received official Lyme diagnoses! They got treatment without an official diagnosis and feel better. It is possible you may actually be able to get an official diagnosis from an ID doctor only because you have, in the ID opinion, done things right: You found ticks present, found a bullseye rash (make sure you photograph it so they can't deny it), caught new infection (superimposed on old) early in the game. You may be one of the few lucky ones having Lyme and finding it in just "the right way" as ID doctors feel it should always present. So you may be able to get an official diagnosis which would force your insurance company to have to pay for your treatment which is good! In the book, someone like you with a recent infection who intervened early in the Lyme presentation was actually able to be cured of the Lyme with only 28 days of antibiotics. However, others with textbook Lyme presentations have been denied diagnoses. I guess, in your case, official diagnosis is worth a try. Good luck with the ID doc. Hope your experience is better than what many of us have had with ID docs.
However, if you don't get your official diagnosis from the ID doc, then move on to an LLMD!
Good luck!!
WAF
Hey Jackie,
Thanks for your reply! I really appreciate you taking the time to answer my questions.
I know you said you weren't medically trained, though your knowledge on the subject is unreal.
I actually rang the ID MD and spoke to the nurse and she stated that he does deal with Lyme Disease. To what extent Im not sure, though Im hoping he's unlike some you have said can be. :o)
If what I have previously was Lyme then I obviously didnt get the rash.
The neuro agreed that the first symptoms can be arthritic pain, which mine was back in april. My ankles were so painful in the morning, I would go to stand and almost fall over from the pain.
Oh to updated you also, I went to the Urologist and he Diagnosed me with Interstital Cystitis.....ironic hey?
I know you said you arent medically trained though would you mind looking at the pics of the rash? Like I said, its fairly faint though if you look at it for a little bit you will eventually see it. Even if its not the Bulls eye rash, just knowing there is actually something there will ease my mind. LOL
http://i739.photobucket.com/albums/xx31/JDandLisa/24012011059.jpg
http://i739.photobucket.com/albums/xx31/JDandLisa/24012011060.jpg
Thanks Heaps
xLx
Lisa,
These are all good questions. I never had a rash, bullseye or otherwise, but everybody is different in whether and how a rash shows up. NonLLMDs put great importance on the rash, but not everyone gets one (maybe half do), and it shows up in different ways. Also I'm not medically trained, so this is just me chattering about what I've read in various places. Others here may have better data than I -- but that said:
1) I don't think it matters whether you had Lyme before or still -- and you would not necessarily have gotten a rash anyway. I have read that some people don't get a rash until they start antibiotic treatment, and then they can get multiple rashes. Some people like me never got a rash, and I have friends who didn't either.
2) The coloration of the rash is different in everyone. Lyme manifests in different ways at different times in different people -- that's one of the things that makes diagnosis so tricky.
3) The rash lasts until it goes away. :) [[Sorry, couldn't resist.]] A week or two maybe? It depends on your immune system, and everyone is different.
I wouldn't obsess over the rash -- take a photo of it for your records, since docs get really interested when they see pictures, and it helps persuade those who don't believe.
The way you describe your rash, with a ring and a spot in the middle, sounds pretty classic to me.
If you go search "lyme rash photos" you'll find lots of links.
I don't want to rain on your parade, but infectious disease (ID) docs are not always keen on treating Lyme or treating it aggressively. I'd still go see him, if I were in your situation, but don't be crushed if he's less than enthusiastic.
Personal experience: I found a tick in the back of my leg, fished it out in one piece, was having strange new symptoms, and happened to be seeing an ID doc in the next couple of days ... so I took the tick and my bitten spot to the appointment. The doc peered at the bite and at the tick, pronounced it 'rather buggy' and sent me home. Full stop.
Lesson: ID docs can be particularly stubborn when it comes to Lyme. I hope yours is different!! Let us know how it goes --
These are all good questions. I never had a rash, bullseye or otherwise, but everybody is different in whether and how a rash shows up. NonLLMDs put great importance on the rash, but not everyone gets one (maybe half do), and it shows up in different ways. Also I'm not medically trained, so this is just me chattering about what I've read in various places. Others here may have better data than I -- but that said:
1) I don't think it matters whether you had Lyme before or still -- and you would not necessarily have gotten a rash anyway. I have read that some people don't get a rash until they start antibiotic treatment, and then they can get multiple rashes. Some people like me never got a rash, and I have friends who didn't either.
2) The coloration of the rash is different in everyone. Lyme manifests in different ways at different times in different people -- that's one of the things that makes diagnosis so tricky.
3) The rash lasts until it goes away. :) [[Sorry, couldn't resist.]] A week or two maybe? It depends on your immune system, and everyone is different.
I wouldn't obsess over the rash -- take a photo of it for your records, since docs get really interested when they see pictures, and it helps persuade those who don't believe.
The way you describe your rash, with a ring and a spot in the middle, sounds pretty classic to me.
If you go search "lyme rash photos" you'll find lots of links.
I don't want to rain on your parade, but infectious disease (ID) docs are not always keen on treating Lyme or treating it aggressively. I'd still go see him, if I were in your situation, but don't be crushed if he's less than enthusiastic.
Personal experience: I found a tick in the back of my leg, fished it out in one piece, was having strange new symptoms, and happened to be seeing an ID doc in the next couple of days ... so I took the tick and my bitten spot to the appointment. The doc peered at the bite and at the tick, pronounced it 'rather buggy' and sent me home. Full stop.
Lesson: ID docs can be particularly stubborn when it comes to Lyme. I hope yours is different!! Let us know how it goes --
Hey Jackie,
Well the Neuro has pushed me out the door, but not before I got a referral to the Infectious Disease MD.
I a little confused about some things with regards to my symptoms and was wondering if you could help me out?
Well I told you I found another Tick on me Friday. Well yest, right near where it was I have a purple ring which also spreads to the side a bit with a purple spot in the middle.
Its a little hard to see though Im thinking its the Bulls eye rash.
I have had a sore neck and headache since yest, and today a little sick to my stomach.
My questions are,
1) If I previously had Lyme and I was bitten by another tick which transferred Lyme would I get the rash? Wouldnt I have got it the first time, if it is Lyme I have?
2) Is the Lyme rash ever a purple looking colour and does it get darker? It seems to be staying the same colour at the moment and is faint to the eye unless in the right light.
3) How long does the rash tend to last?
Thanks Again!
xLx
Hi Jackie,
I just had to let you know, I found a Infectious Disease MD that deals with Lyme Disease 10 mins from me!!!!!!! And he takes my Insurance too!!!!!!!!!!! LOL IM SO EXCITED!!!!!!! WOO HOO!!!! Now I just have to get a referral from my Neurologist and we are good to go!!!!!!!!!!!!!!!!! Excuse me while I do a backflip! LOL
YAAAAAAAAAAAAAAAAAAAAAAAAAAY!
Thank You!!!!
I just had to let you know, I found a Infectious Disease MD that deals with Lyme Disease 10 mins from me!!!!!!! And he takes my Insurance too!!!!!!!!!!! LOL IM SO EXCITED!!!!!!! WOO HOO!!!! Now I just have to get a referral from my Neurologist and we are good to go!!!!!!!!!!!!!!!!! Excuse me while I do a backflip! LOL
YAAAAAAAAAAAAAAAAAAAAAAAAAAY!
Thank You!!!!
Hi Jackie,
Wow, its amazing how many people actually feel like they are having a heart attack with this disease. I have read up on it, and the number of stories about people going to ER because of that is astonding.
You actually triggered a memory in me when you mentioned electrolytes. Since going to the Neurologist I have had numerous tests, one of them being a nerve study on my arms and legs. After having my arms done, my Neuro came in and said my test was perfectly normal and that it may be something to do with my electrolytes!!!! Thank you for reminding me, and Ill be sure to mention that to him tomorrow.
I have also read about magnesium being a major factor in the functioning of your body. I know for a fact that I havent been tested for that, or iron for some reason.
Im sorry it has taken me awhile to write back to you, though I had a little episode after my last post. You ready?
After I posted last I went outside for a smoke, I then needed to go to the bathroom.
As you do, you sit on the toilet and kinda not really pay attention to anything.
I looked down at the side of my leg where your hip connects to your thigh, not really thinking. Again I thought 'Oh a blackhead, thats a strange place to get one.' I looked closer and was like 'That seems to be big for a blackhead' so I went to squeeze it. It hardly budged, so I tried again. BANG!!!!! It popped and blood went everywhere, and I realised it was another TICK!!!! Can you believe it? I neally fell over, what are the odds of that? I still have the mark from where it was connected so I will show my neurologist tomorrow and push the subject of lyme disease. I have been watching how I have felt, and this morning I have an extremely sore neck.
Do you know what happens if you have more then one transferring of Lyme from a tick?
I havent noticed any 'Bulls Eye' rashes on me. Though I have one spot on my left calf that the doc said was ring worm, and then two days ago I had another spot come up on my left calf. I have been putting cream on the spot that is supposedly ringworm for months and it hasnt budged?
I also have a spot just below my knee cap that doesnt itch, though it comes and goes?
I will try the magnesium like you suggested and see how that goes.
I am hoping my neuro will be a little more opened minded and willing to help me out.
He was the President of Neurology in Florida for years so Im going to try my luck with his experience. His daughter who I was originally seeing is a MS specialist. Maybe the two of them together can work this out.
I will also search for Infectious Disease MD's around here and see where that might lead me.
Again thank you so much for your advice and help. Your a inspiration to help me fight whatever this might be. THANK YOU!!!!
Wow, its amazing how many people actually feel like they are having a heart attack with this disease. I have read up on it, and the number of stories about people going to ER because of that is astonding.
You actually triggered a memory in me when you mentioned electrolytes. Since going to the Neurologist I have had numerous tests, one of them being a nerve study on my arms and legs. After having my arms done, my Neuro came in and said my test was perfectly normal and that it may be something to do with my electrolytes!!!! Thank you for reminding me, and Ill be sure to mention that to him tomorrow.
I have also read about magnesium being a major factor in the functioning of your body. I know for a fact that I havent been tested for that, or iron for some reason.
Im sorry it has taken me awhile to write back to you, though I had a little episode after my last post. You ready?
After I posted last I went outside for a smoke, I then needed to go to the bathroom.
As you do, you sit on the toilet and kinda not really pay attention to anything.
I looked down at the side of my leg where your hip connects to your thigh, not really thinking. Again I thought 'Oh a blackhead, thats a strange place to get one.' I looked closer and was like 'That seems to be big for a blackhead' so I went to squeeze it. It hardly budged, so I tried again. BANG!!!!! It popped and blood went everywhere, and I realised it was another TICK!!!! Can you believe it? I neally fell over, what are the odds of that? I still have the mark from where it was connected so I will show my neurologist tomorrow and push the subject of lyme disease. I have been watching how I have felt, and this morning I have an extremely sore neck.
Do you know what happens if you have more then one transferring of Lyme from a tick?
I havent noticed any 'Bulls Eye' rashes on me. Though I have one spot on my left calf that the doc said was ring worm, and then two days ago I had another spot come up on my left calf. I have been putting cream on the spot that is supposedly ringworm for months and it hasnt budged?
I also have a spot just below my knee cap that doesnt itch, though it comes and goes?
I will try the magnesium like you suggested and see how that goes.
I am hoping my neuro will be a little more opened minded and willing to help me out.
He was the President of Neurology in Florida for years so Im going to try my luck with his experience. His daughter who I was originally seeing is a MS specialist. Maybe the two of them together can work this out.
I will also search for Infectious Disease MD's around here and see where that might lead me.
Again thank you so much for your advice and help. Your a inspiration to help me fight whatever this might be. THANK YOU!!!!
I hear you. I ended up in the ER twice with symptoms of a heart attack. They hooked me up to an IV with electrolytes, and within an hour or so I was feeling so chipper I walked home a couple of miles uphill from the hospital. I asked the first ER doc what he thought could be wrong as I miraculously recovered, and he said very honestly and seriously: 'I don't know.' I think now that I got better so fast both times is that IV electrolytes include magnesium, and Lyme bacteria use up Mg in their reproductive process. Blood levels stay stable on tests, but intracellular Mg is being depleted to keep blood levels up to par. When the cells run out, the blood levels drop, and bang. (Mg is needed to allow cells to communicate their little electrical signals to each other, and the heart being cells that need to yell "BEAT NOW!" on a regular basis .... well.
You might try Mg supplements ... I read that the sign you are taking too much Mg is diarrhea, and I keep it at a reasonable level and haven't gotten diarrhea. I had one unsympathetic ID doc (is there any other kind??) tell me I could damage my kidneys, but in other places read that diarrhea will kick in before that happens. Be sure tho that you tell future docs that you are taking __ mg of magnesium daily, so they can factor that in to their assessment. There are different formulations; I take one that has Mg citrate, aspartate and orotate ("CAO") all in one and it works well for me. I take the MDR, and also get some from dietary intake, so it's not huge, but I'm very sensitive to everything.
Good luck with the neuro. They aren't keen on Lyme, but there are surprisingly enlightened docs out there ... sometimes they have had personal or family experience with Lyme and that changes their minds, ever so quietly.
Also: Fair warning that many mainstream docs think IGeneX is part of the LLMD/nutjob complex and perhaps even a fraud.
I hope the neuro is enlightened and all goes well -- but if not, you know where we are, hanging around the electronic water cooler! Best wishes, fingers crossed (X) for luck -- You sound strong and determined, and that's all to the good.
You might try Mg supplements ... I read that the sign you are taking too much Mg is diarrhea, and I keep it at a reasonable level and haven't gotten diarrhea. I had one unsympathetic ID doc (is there any other kind??) tell me I could damage my kidneys, but in other places read that diarrhea will kick in before that happens. Be sure tho that you tell future docs that you are taking __ mg of magnesium daily, so they can factor that in to their assessment. There are different formulations; I take one that has Mg citrate, aspartate and orotate ("CAO") all in one and it works well for me. I take the MDR, and also get some from dietary intake, so it's not huge, but I'm very sensitive to everything.
Good luck with the neuro. They aren't keen on Lyme, but there are surprisingly enlightened docs out there ... sometimes they have had personal or family experience with Lyme and that changes their minds, ever so quietly.
Also: Fair warning that many mainstream docs think IGeneX is part of the LLMD/nutjob complex and perhaps even a fraud.
I hope the neuro is enlightened and all goes well -- but if not, you know where we are, hanging around the electronic water cooler! Best wishes, fingers crossed (X) for luck -- You sound strong and determined, and that's all to the good.
Hi Jackie,
Again thank you for your reply.
I too have also read that Lyme can cause Interstital Cystitis. Lets see what the urologist has to say.
I think that the controversy about Lyme Disease is horrible. It is well known that there is a Paralysis Tick, so why is it so hard to fathom that a tick could cause other problems?
I just dont get it.
I have been to the ER 3 times with symptoms making me believe I was having a heart attack. All times, I was told my heart was fine, my chest was fine and all blood work was fine. I was told that they were Anxiety attacks, and I tell you I had to refrain from going crazy at them.
Why would an anxiety attack make my legs go numb? Why would I have an anxiety attack while laying on the lounge watching TV? Its all a joke.
The worst part about it is, all us with these crazy symptoms KNOW there is something wrong. We KNOW our bodies and that something isnt right.
Im 30yrs old and feel like a 90yr old. I did gymnastics for 9 years and have always been fit. I eat healthy and I have minimal stress in my life. Why does it feel like I have arthritis when the tests say I dont. Why is my vision going on me when there is nothing wrong with my eyes? Why do I have excrushiating stabbing pains in my head that they put down to migranes when I never use to get even headaches?
I could go on and on. LOL Sorry I just had to vent.
Thank you so much for your advice. I looked up some LLMD's and the closest one is 6 hrs away. I am going to talk to my Neuro about the possiblity of lyme and being tested with the IGeneX test and see how I go. I was told at my last appointment that if these last tests come back with nothing significant then he is sending me to a Psychologist. LOL Yep I am on the same path as everyone else. Im looking like Im crazy.
If only I could make the doctors feel what I am, like something inside me is slowing eating me from the inside out.
Thank you for having the confidence in me, and listening and giving me advice. Its hard these days because its so easy for people to label you a hypocondriac or with having some mental illness.
I hope they start to realise that this disease is very real and its ruining peoples health and lives.
xLx
Again thank you for your reply.
I too have also read that Lyme can cause Interstital Cystitis. Lets see what the urologist has to say.
I think that the controversy about Lyme Disease is horrible. It is well known that there is a Paralysis Tick, so why is it so hard to fathom that a tick could cause other problems?
I just dont get it.
I have been to the ER 3 times with symptoms making me believe I was having a heart attack. All times, I was told my heart was fine, my chest was fine and all blood work was fine. I was told that they were Anxiety attacks, and I tell you I had to refrain from going crazy at them.
Why would an anxiety attack make my legs go numb? Why would I have an anxiety attack while laying on the lounge watching TV? Its all a joke.
The worst part about it is, all us with these crazy symptoms KNOW there is something wrong. We KNOW our bodies and that something isnt right.
Im 30yrs old and feel like a 90yr old. I did gymnastics for 9 years and have always been fit. I eat healthy and I have minimal stress in my life. Why does it feel like I have arthritis when the tests say I dont. Why is my vision going on me when there is nothing wrong with my eyes? Why do I have excrushiating stabbing pains in my head that they put down to migranes when I never use to get even headaches?
I could go on and on. LOL Sorry I just had to vent.
Thank you so much for your advice. I looked up some LLMD's and the closest one is 6 hrs away. I am going to talk to my Neuro about the possiblity of lyme and being tested with the IGeneX test and see how I go. I was told at my last appointment that if these last tests come back with nothing significant then he is sending me to a Psychologist. LOL Yep I am on the same path as everyone else. Im looking like Im crazy.
If only I could make the doctors feel what I am, like something inside me is slowing eating me from the inside out.
Thank you for having the confidence in me, and listening and giving me advice. Its hard these days because its so easy for people to label you a hypocondriac or with having some mental illness.
I hope they start to realise that this disease is very real and its ruining peoples health and lives.
xLx
Lisa,
Quick note about the interstitial cystitis: I believe I have read that Lyme can cause bladder problems, so it's something to keep in mind, even if your urologist doesn't think in that direction.
There is talk in various medical circles that a tick (like the one on your stomach) must be attached for longer than X hours/days before it can infect you ... but I have never read anywhere how that was determined. It strikes me as ridiculous on its face, because it only takes a few seconds for a mosquito to transmit malaria or dengue fever. That you even saw a tick is amazing; many of us don't (including me).
Don't be stymied if your W.blot was negative. Those tests are far, far from accurate. Lyme has to be a clinical diagnosis, based on symptoms and history, aided by tests -- but too many MDs rely ONLY on the tests, and that's why there are very ill people wandering around out here. It's not the test that's important: it's the doc reading the test and looking at and talking to the patient.
LLMDs do not advertise, because local and state medical boards in some areas come down on them pretty hard for practicing outside the boundaries of known medicine...known to nonLLMDs, that is. So you may have a LLMD nearby and not know it. Try the referral sites in the links I sent above, and also google/search around various areas you can get to -- given your location near so many state borders, you may get lucky that way. Some of our friends posting here drive hours to see an LLMD, and if you gotta do it, you gotta do it. Even here in California where MDs have freedom of conscience to practice as they see fit, LLMDs are not easy to find, so I understand what you're saying.
I'd get your hubby tested to, when you find an LLMD, just in case, given the symptoms you describe.
About the tests to ask for ... an LLMD knows what to order; a nonLLMD might order the traditional W.blot etc. tests, but may not know how to read them in conjunction with your symptoms. A nonLLMD usually doesn't think to order tests for co-infections in any event, so misses those possibilities altogether. And even if an LLMD orders an IGeneX test, s/he won't know what to make of them.
Bottom line: finding the right doc is the first and most important thing you can do. The state of medicine is in disarray with regard to Lyme and its coinfections, so any doc won't do, sadly enough.
Best wishes -- let us know how you do and what you do, okay? I think you are very well equipped in your thinking to get this taken care of. You go!
Quick note about the interstitial cystitis: I believe I have read that Lyme can cause bladder problems, so it's something to keep in mind, even if your urologist doesn't think in that direction.
There is talk in various medical circles that a tick (like the one on your stomach) must be attached for longer than X hours/days before it can infect you ... but I have never read anywhere how that was determined. It strikes me as ridiculous on its face, because it only takes a few seconds for a mosquito to transmit malaria or dengue fever. That you even saw a tick is amazing; many of us don't (including me).
Don't be stymied if your W.blot was negative. Those tests are far, far from accurate. Lyme has to be a clinical diagnosis, based on symptoms and history, aided by tests -- but too many MDs rely ONLY on the tests, and that's why there are very ill people wandering around out here. It's not the test that's important: it's the doc reading the test and looking at and talking to the patient.
LLMDs do not advertise, because local and state medical boards in some areas come down on them pretty hard for practicing outside the boundaries of known medicine...known to nonLLMDs, that is. So you may have a LLMD nearby and not know it. Try the referral sites in the links I sent above, and also google/search around various areas you can get to -- given your location near so many state borders, you may get lucky that way. Some of our friends posting here drive hours to see an LLMD, and if you gotta do it, you gotta do it. Even here in California where MDs have freedom of conscience to practice as they see fit, LLMDs are not easy to find, so I understand what you're saying.
I'd get your hubby tested to, when you find an LLMD, just in case, given the symptoms you describe.
About the tests to ask for ... an LLMD knows what to order; a nonLLMD might order the traditional W.blot etc. tests, but may not know how to read them in conjunction with your symptoms. A nonLLMD usually doesn't think to order tests for co-infections in any event, so misses those possibilities altogether. And even if an LLMD orders an IGeneX test, s/he won't know what to make of them.
Bottom line: finding the right doc is the first and most important thing you can do. The state of medicine is in disarray with regard to Lyme and its coinfections, so any doc won't do, sadly enough.
Best wishes -- let us know how you do and what you do, okay? I think you are very well equipped in your thinking to get this taken care of. You go!
Hi Wonko,
Thank you for your reply also.
I had a LP done and they did test for Lyme. I wasnt told anything so Im guessing it was negative. I know that they tested it with Western Blot so who knows whether it was right or not.
Im getting a copy of all my results so hopefully I can get some idea about my situation.
The one thing that has also stuck out in my mind, is my EOS count is really high. That can point towards viral, bacterial or fungal infection. Lets hope Im right and can sort this out before I go crazy. LOL
xLx
Thank you for your reply also.
I had a LP done and they did test for Lyme. I wasnt told anything so Im guessing it was negative. I know that they tested it with Western Blot so who knows whether it was right or not.
Im getting a copy of all my results so hopefully I can get some idea about my situation.
The one thing that has also stuck out in my mind, is my EOS count is really high. That can point towards viral, bacterial or fungal infection. Lets hope Im right and can sort this out before I go crazy. LOL
xLx
Hi Jackie,
Thank You so much for your quick and detailed reply.
As you have experienced yourself, I am to the point of complete frustration.
Before I was referred to a Neurologist I actually printed out a list of Lyme symptoms, from the Canadian Lyme Disease Foundation.
It states any more then 20 of the symptoms and it represents serious potential for Lyme. The list has 76 symptoms and I have 62 of them!!!
I have researched and researched and have come to a bit of a dead end.
Both my mother and father have autoimmune diseases so that puts me a a higher risk of either MS or Lupus. I have Psoriasis myself and am seeing a Urologist monday for possible Interstitial Cystitis.
Now the main thing that makes it tricky is I started gettting symptoms about 2 months after I had my daughter, so that also coinsides with MS and Lupus.
The thing that has sent me back to Lyme are these few things,
1) We took in a stray dog Oct 09 and she was covered in ticks. My husband washed her and took the ticks off. I have read that Lyme can be passed through their saliva, even their paws. We passed her onto another family before xmas and she is now living with them.
2) 5 Months ago we moved from our old house into the new apartment we are in now. One night I was outside, my stomach felt itchy. I scratched it while lifting my shirt, and noticed what I thought was a blackhead on my belly. I went to squeeze it and noticed it was a TINY tick. I pulled it off and never thought any more about it.
3) Around Dec 09 not long after we passed the dog on, I noticed these two strange marks on the top of my feet. Kinda at the ankle where your shin connects to the start of your foot. They looked like brusies though they had a dry spot in the middle. I showed my husband and what do you know, he shows me that he has the same on his feet! Now what are the odds of that? I have worked out they are pupura and we both still have them today.
Now we are all probably thinking the same, what are the odds of both my husband and I having MS or Lupus or both for that matter?
Does it seem Lyme would be the most likely explanation?
I marked off the list for my husband also and he has 36 or more.
I want to now see a LLMD though there are none in Florida. I have read up all about how you can have coinfections and they can hide the other.
Is there any tests I can ask for that may lead to the positive of Lyme?
The other thing too is I want this sorted as soon as I can, because we had this dog while I was pregnant there is a high possibility I have passed it onto my daughter. :o(
Thank You so much for taking the time to talk with me and Im looking forward to hearing from you.
xLx
Thank You so much for your quick and detailed reply.
As you have experienced yourself, I am to the point of complete frustration.
Before I was referred to a Neurologist I actually printed out a list of Lyme symptoms, from the Canadian Lyme Disease Foundation.
It states any more then 20 of the symptoms and it represents serious potential for Lyme. The list has 76 symptoms and I have 62 of them!!!
I have researched and researched and have come to a bit of a dead end.
Both my mother and father have autoimmune diseases so that puts me a a higher risk of either MS or Lupus. I have Psoriasis myself and am seeing a Urologist monday for possible Interstitial Cystitis.
Now the main thing that makes it tricky is I started gettting symptoms about 2 months after I had my daughter, so that also coinsides with MS and Lupus.
The thing that has sent me back to Lyme are these few things,
1) We took in a stray dog Oct 09 and she was covered in ticks. My husband washed her and took the ticks off. I have read that Lyme can be passed through their saliva, even their paws. We passed her onto another family before xmas and she is now living with them.
2) 5 Months ago we moved from our old house into the new apartment we are in now. One night I was outside, my stomach felt itchy. I scratched it while lifting my shirt, and noticed what I thought was a blackhead on my belly. I went to squeeze it and noticed it was a TINY tick. I pulled it off and never thought any more about it.
3) Around Dec 09 not long after we passed the dog on, I noticed these two strange marks on the top of my feet. Kinda at the ankle where your shin connects to the start of your foot. They looked like brusies though they had a dry spot in the middle. I showed my husband and what do you know, he shows me that he has the same on his feet! Now what are the odds of that? I have worked out they are pupura and we both still have them today.
Now we are all probably thinking the same, what are the odds of both my husband and I having MS or Lupus or both for that matter?
Does it seem Lyme would be the most likely explanation?
I marked off the list for my husband also and he has 36 or more.
I want to now see a LLMD though there are none in Florida. I have read up all about how you can have coinfections and they can hide the other.
Is there any tests I can ask for that may lead to the positive of Lyme?
The other thing too is I want this sorted as soon as I can, because we had this dog while I was pregnant there is a high possibility I have passed it onto my daughter. :o(
Thank You so much for taking the time to talk with me and Im looking forward to hearing from you.
xLx
Lyme bacteria can show up in CSF, but it does not always. I don't know the statistics, and as JackieC points out there is a lot of dispute over Kyme disease within the medical community so any stats on Lyme in CSF out there are probably not uiniversally accepted anyway.
I had an LP to rule out MS, and at my request I also asked the CSF to be tested for Lyme, and it came back negative. Ive read many patient experiences and it seems common for Lyme sick people to have normal CSF. I don't think an LP is a definitive test for Lyme.
I had an LP to rule out MS, and at my request I also asked the CSF to be tested for Lyme, and it came back negative. Ive read many patient experiences and it seems common for Lyme sick people to have normal CSF. I don't think an LP is a definitive test for Lyme.
Lisa,
Welcome to MedHelp. I'm sorry to hear about all you have been through and still no answers. I think you are asking good questions, and that's important, because it's easy to be overwhelmed by MDs and their speculations and hypotheses.
I'm not medically trained, so you can't rely on what I say, but .... here's my take for what it's worth:
There is a split in the medical community about Lyme, and neurologists are among the group that don't view Lyme as a serious, persistent infection, so they are prone to answer as your docs have: looking for MS, lupus, and other diseases that are even more indistinct than Lyme -- tho mainstream medicine doesn't view them that way.
Lyme is known to be a bacterial disease, and based on research now several decades old, the medical establishment holds that Lyme is cured by 2-3 weeks of antibiotics, and any remaining symptoms are attributable to so-called 'post-Lyme syndrome', in which your body continues to react to bacteria that are no long there, in a vague form of auto-immunity, OR are attributable to some other disease process such as MS, lupus, etc.
The docs then focus on the MS/lupus/etc. possibilities and don't spend much time on considering Lyme further. Performing a spinal tap partly or wholly to look for Lyme bacteria is sometimes done, but Lyme bacteria are often not evident in spinal fluid, from what I read.
MRIs also don't detect Lyme; Lyme docs sometimes order a SPECT scan instead, which shows blood flow (perfusion) through the brain, and if it is impaired, it may be due to inflammation that Lyme causes in the brain, interfering with blood flow. MRIs don't show that.
To complete the scenario, blood tests done to detect Lyme are not very accurate, particularly if a period of time has gone by since infection. The standard blood tests look for not the actual Lyme bacteria in the blood, but look for antibodies your immune system makes against the Lyme bacteria. Lyme has a trick of surrounding itself in a slimy curtain of goo inside the body, where the immune system can't see it, and what can't be seen cannot be identified and attacked by the immune system. So the immune system goes to sleep, the Lyme antibodies drop, the tests don't find antibodies, and therefore the tests are negative. Therefore you don't have Lyme.
There are other tests that Lyme docs order to look for bits of the Lyme bacteria (in some scientific fashion I can't recite), which tests are run by a lab called IGeneX. NonLyme docs think it's useless or fraudulent, I'm not sure which, and won't order or give credence to the tests when the come back positive. (I've had nonLyme docs take each of those positions.)
The bottom line in my non-medical view is: it doesn't sound like you have been adequately tested for Lyme (or for other infections that the same ticks carry, in maybe 50% of Lyme infections), so your docs are focussing on the things they know about: lupus, MS, etc.
This is not to say you have Lyme and don't have lupus or MS etc., but Lyme is curable, or at least it can be beaten down to the point that it feels like a cure -- while neither lupus nor MS has a cure or even near-cure that I know of.
I am sure your docs mean well and probably believe that Lyme docs are quacks, which is the mainstream medical view of Lyme docs and the International Lyme and Associated Diseases Society (ILADS), the main Lyme organization with its eyes wide open. However your docs are likely not aware of their own shortcomings.
In your situation, I would find a Lyme doc (sometimes casually called by us patients 'LLMDs' or Lyme-Literate MDs) and get a work up. Your current docs probably believe they have done all that established medicine can and should do to rule out a Lyme infection in you, so they are looking at lupus, MS, etc. You would have to find an LLMD.
Here is a list of websites, some of which have/had referral functions to locate an LLMD in your area. I also just googled 'LLMD florida panhandle' and there were a bunch of links to other people also looking for an LLMD in your area. You could also search "LLMD Pensacola" and "LLMD Mobile" or wherever you are able to travel to.
ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
standupforlyme [dot] org (I think this is a Texas-oriented website)
txlda [dot] org (txlda I think is short for Texas lyme disease association)
Also try ILADS [dot] org for information, esp under the tab 'About Lyme', where you will find Burrascano's "Diagnostic Hints and Treatment Guidelines" article. Every LLMD has a different approach, and sometimes it takes more than one try to find a doc who is a good fit, but we are on the frontiers of medicine, so it's understandable. I don't think they have a referral function currently, but you might look.
I went through about 20 docs before I found an LLMD, who diagnosed me. I was in terrible shape and no one knew what it was. I've seen other docs since then who don't want anything to do with me because they don't 'believe' in Lyme, and their reaction is pure contempt. It's ugly out there, so be prepared.
Bottom line: I think you are asking all the right questions, and I would encourage you to find an LLMD, take copies of all your tests, and get another opinion. Your current docs might not react well if they know you are seeing an LLMD, so you might want to keep that to yourself, but it's a judgment call. LLMD = witchcraft & quackery in the view of mainstream docs.
I hope this rambling bit is useful to you. Again, I think you are asking the right questions. Keep asking till you get answers that make sense to you. Let us know how you do, okay?
Welcome to MedHelp. I'm sorry to hear about all you have been through and still no answers. I think you are asking good questions, and that's important, because it's easy to be overwhelmed by MDs and their speculations and hypotheses.
I'm not medically trained, so you can't rely on what I say, but .... here's my take for what it's worth:
There is a split in the medical community about Lyme, and neurologists are among the group that don't view Lyme as a serious, persistent infection, so they are prone to answer as your docs have: looking for MS, lupus, and other diseases that are even more indistinct than Lyme -- tho mainstream medicine doesn't view them that way.
Lyme is known to be a bacterial disease, and based on research now several decades old, the medical establishment holds that Lyme is cured by 2-3 weeks of antibiotics, and any remaining symptoms are attributable to so-called 'post-Lyme syndrome', in which your body continues to react to bacteria that are no long there, in a vague form of auto-immunity, OR are attributable to some other disease process such as MS, lupus, etc.
The docs then focus on the MS/lupus/etc. possibilities and don't spend much time on considering Lyme further. Performing a spinal tap partly or wholly to look for Lyme bacteria is sometimes done, but Lyme bacteria are often not evident in spinal fluid, from what I read.
MRIs also don't detect Lyme; Lyme docs sometimes order a SPECT scan instead, which shows blood flow (perfusion) through the brain, and if it is impaired, it may be due to inflammation that Lyme causes in the brain, interfering with blood flow. MRIs don't show that.
To complete the scenario, blood tests done to detect Lyme are not very accurate, particularly if a period of time has gone by since infection. The standard blood tests look for not the actual Lyme bacteria in the blood, but look for antibodies your immune system makes against the Lyme bacteria. Lyme has a trick of surrounding itself in a slimy curtain of goo inside the body, where the immune system can't see it, and what can't be seen cannot be identified and attacked by the immune system. So the immune system goes to sleep, the Lyme antibodies drop, the tests don't find antibodies, and therefore the tests are negative. Therefore you don't have Lyme.
There are other tests that Lyme docs order to look for bits of the Lyme bacteria (in some scientific fashion I can't recite), which tests are run by a lab called IGeneX. NonLyme docs think it's useless or fraudulent, I'm not sure which, and won't order or give credence to the tests when the come back positive. (I've had nonLyme docs take each of those positions.)
The bottom line in my non-medical view is: it doesn't sound like you have been adequately tested for Lyme (or for other infections that the same ticks carry, in maybe 50% of Lyme infections), so your docs are focussing on the things they know about: lupus, MS, etc.
This is not to say you have Lyme and don't have lupus or MS etc., but Lyme is curable, or at least it can be beaten down to the point that it feels like a cure -- while neither lupus nor MS has a cure or even near-cure that I know of.
I am sure your docs mean well and probably believe that Lyme docs are quacks, which is the mainstream medical view of Lyme docs and the International Lyme and Associated Diseases Society (ILADS), the main Lyme organization with its eyes wide open. However your docs are likely not aware of their own shortcomings.
In your situation, I would find a Lyme doc (sometimes casually called by us patients 'LLMDs' or Lyme-Literate MDs) and get a work up. Your current docs probably believe they have done all that established medicine can and should do to rule out a Lyme infection in you, so they are looking at lupus, MS, etc. You would have to find an LLMD.
Here is a list of websites, some of which have/had referral functions to locate an LLMD in your area. I also just googled 'LLMD florida panhandle' and there were a bunch of links to other people also looking for an LLMD in your area. You could also search "LLMD Pensacola" and "LLMD Mobile" or wherever you are able to travel to.
ilads [dot] org
lymediseaseassociation [dot] org
truthaboutlymedisease [dot] com
lymenet [dot] org
chroniclymedisease [dot] com
lymedisease [dot] org (California Lyme Disease Assn -- CALDA)
standupforlyme [dot] org (I think this is a Texas-oriented website)
txlda [dot] org (txlda I think is short for Texas lyme disease association)
Also try ILADS [dot] org for information, esp under the tab 'About Lyme', where you will find Burrascano's "Diagnostic Hints and Treatment Guidelines" article. Every LLMD has a different approach, and sometimes it takes more than one try to find a doc who is a good fit, but we are on the frontiers of medicine, so it's understandable. I don't think they have a referral function currently, but you might look.
I went through about 20 docs before I found an LLMD, who diagnosed me. I was in terrible shape and no one knew what it was. I've seen other docs since then who don't want anything to do with me because they don't 'believe' in Lyme, and their reaction is pure contempt. It's ugly out there, so be prepared.
Bottom line: I think you are asking all the right questions, and I would encourage you to find an LLMD, take copies of all your tests, and get another opinion. Your current docs might not react well if they know you are seeing an LLMD, so you might want to keep that to yourself, but it's a judgment call. LLMD = witchcraft & quackery in the view of mainstream docs.
I hope this rambling bit is useful to you. Again, I think you are asking the right questions. Keep asking till you get answers that make sense to you. Let us know how you do, okay?
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