Aa
Does this sound like Lyme?
Hello to the Lyme board! Sorry for my long initial post...
I'm a 31 yr old female that had an episode of aura migraine in 2008 - I had the aura with flashing lights in my right eye (first time I've ever had that although I've suffered headaches and migraines most of my life) and the entire right side of my body went numb. The numbness went off after about 20 minutes. Everyone figured I was having a migraine due to meds I had just started taking (which were immediately stopped, Citalopram/Cipramil). Please note the medication was an antidepressant but I am not very depressed or very anxious any more but I do get bouts of it. Thyroid medication has taken care of most of it.
Since then the numbness came back back little by little and is now currently with me all the time - the intensity varies but it's always there. Some days it's mildly irritating and other days it is deepy painful and leaves me bed-bound. I also experience blurred vision in my right eye a few times during the day. Occasionally the numbness will 'spread' over to my left side but it's not the same as on the right, it's a much lighter numbness.
On my right side I have altered sensations, and it is usually colder than my left side and it feels weaker (but I don't think I have a loss of strength), especially with repetitive movements. I've lost the fine motor movement on my right also. I feel like I am wearing a glove and a tight sock on the right side (but sort of like that over the whole side, including my face and head). Even the inside of my mouth and tongue are affected.
It effects the way I walk as I can't feel the ground beneath my foot properly so constantly in fear of falling over.
I suffer terrible migraines with the pain centering around the right temple. I feel mildy dizzy all the time with vertigo at times. I suffer with very bad brain fog and a 'spaced out' feeling in my head, leaving me feeling very detached and like I am watching real life on TV. Fatigue is a very bad problem for me all the time.
Occasionally I will experience crawling sensations on the LEFT side of my face. I have low-normal blood pressure that goes as low as 90/60 at times. My fingernails often turn blue (possibly related to my thyroid condition?).
I've had several MRIs, CT scans, brain angios, countless blood tests - all completely clear with no leisons or anything abnormal. So I'm at a loss as to what is causing this problem.
I have autoimmune thyroid disease which I am optimally treated for (have tried many variatons of the meds) and the meds have resolved lots of things for me but not enough to get a good quality of life back. I've looked in food intolerances and adrenal insufficency but not come up with anything apart from severe Vitamin D deficiency - was 10< but now up to 75 with treatment. I supplement with B12 to be on the safe side.
A short course of steroids made the symptoms LOTS worse and it spread to my left (that reduced once the meds were withdrawn). It's also much worse in the week leading to my period. Occasionally when my thyroid meds are too high it will make it worse also.
Last week I tested negative for the ELISA Lyme test and am wondering if I should continue to pursue a diagnosis (which would mean spending lots of money on testing). In the last 6 weeks or so I have also developed oral thrush so am also looking at candida as a possiblity.
Thank you for reading!
I'm a 31 yr old female that had an episode of aura migraine in 2008 - I had the aura with flashing lights in my right eye (first time I've ever had that although I've suffered headaches and migraines most of my life) and the entire right side of my body went numb. The numbness went off after about 20 minutes. Everyone figured I was having a migraine due to meds I had just started taking (which were immediately stopped, Citalopram/Cipramil). Please note the medication was an antidepressant but I am not very depressed or very anxious any more but I do get bouts of it. Thyroid medication has taken care of most of it.
Since then the numbness came back back little by little and is now currently with me all the time - the intensity varies but it's always there. Some days it's mildly irritating and other days it is deepy painful and leaves me bed-bound. I also experience blurred vision in my right eye a few times during the day. Occasionally the numbness will 'spread' over to my left side but it's not the same as on the right, it's a much lighter numbness.
On my right side I have altered sensations, and it is usually colder than my left side and it feels weaker (but I don't think I have a loss of strength), especially with repetitive movements. I've lost the fine motor movement on my right also. I feel like I am wearing a glove and a tight sock on the right side (but sort of like that over the whole side, including my face and head). Even the inside of my mouth and tongue are affected.
It effects the way I walk as I can't feel the ground beneath my foot properly so constantly in fear of falling over.
I suffer terrible migraines with the pain centering around the right temple. I feel mildy dizzy all the time with vertigo at times. I suffer with very bad brain fog and a 'spaced out' feeling in my head, leaving me feeling very detached and like I am watching real life on TV. Fatigue is a very bad problem for me all the time.
Occasionally I will experience crawling sensations on the LEFT side of my face. I have low-normal blood pressure that goes as low as 90/60 at times. My fingernails often turn blue (possibly related to my thyroid condition?).
I've had several MRIs, CT scans, brain angios, countless blood tests - all completely clear with no leisons or anything abnormal. So I'm at a loss as to what is causing this problem.
I have autoimmune thyroid disease which I am optimally treated for (have tried many variatons of the meds) and the meds have resolved lots of things for me but not enough to get a good quality of life back. I've looked in food intolerances and adrenal insufficency but not come up with anything apart from severe Vitamin D deficiency - was 10< but now up to 75 with treatment. I supplement with B12 to be on the safe side.
A short course of steroids made the symptoms LOTS worse and it spread to my left (that reduced once the meds were withdrawn). It's also much worse in the week leading to my period. Occasionally when my thyroid meds are too high it will make it worse also.
Last week I tested negative for the ELISA Lyme test and am wondering if I should continue to pursue a diagnosis (which would mean spending lots of money on testing). In the last 6 weeks or so I have also developed oral thrush so am also looking at candida as a possiblity.
Thank you for reading!
Hi JackieCalifornia,
Many thanks for the detailed reply, I really appreciate it.
I can see how lots of things match with Lyme but I do appreciate how it mimics other illnesses (and how other illnesses mimic Lyme).
Your comments on balance sum it up perfectly - it was so much worse before thyroid meds, walking into things can be a common symptom of underactive thyroid from what I have read but I still always have to put a steadying hand out or risk a shoulder bruise!
Interesting what you say re blood pressure too - exactly the same for me in terms of having low-normal to start with that's become lower since being ill - I've often read Lyme can raise the BP so I did wonder about that.
I will be sure to raise the subject of Candida with the Breakspear Clinic when I see them in November as my current GP hasn't been much help so far.
I've read quite a lot on the benefits of Vitamin D but that's such an interesting point you've made about it suppressing the immune system. It would make sense as it is a pre-hormone (rather than a true vitamin) from the steroid family of hormones.
I think I will reserve judgement on what to do about that when I know for sure what's wrong with me.
Thanks again and I will update when I have had my tests done.
Many thanks for the detailed reply, I really appreciate it.
I can see how lots of things match with Lyme but I do appreciate how it mimics other illnesses (and how other illnesses mimic Lyme).
Your comments on balance sum it up perfectly - it was so much worse before thyroid meds, walking into things can be a common symptom of underactive thyroid from what I have read but I still always have to put a steadying hand out or risk a shoulder bruise!
Interesting what you say re blood pressure too - exactly the same for me in terms of having low-normal to start with that's become lower since being ill - I've often read Lyme can raise the BP so I did wonder about that.
I will be sure to raise the subject of Candida with the Breakspear Clinic when I see them in November as my current GP hasn't been much help so far.
I've read quite a lot on the benefits of Vitamin D but that's such an interesting point you've made about it suppressing the immune system. It would make sense as it is a pre-hormone (rather than a true vitamin) from the steroid family of hormones.
I think I will reserve judgement on what to do about that when I know for sure what's wrong with me.
Thanks again and I will update when I have had my tests done.
Gorybelle, thank you for the reply - I am in the UK too - I am going to the Breakspear Clinic in November, which has LLMDs so have specified who I would like to see.
Fingers crossed they are the right people to see, they seem to test a range of things.
Fingers crossed they are the right people to see, they seem to test a range of things.
I see you are in the UK -- so is Gorbybelle! You two can compare notes on the specifics of whatever variety of Lyme exists 'over there.'
Here are a few comments in addition to Gorby's good points ---
You say: "I am not very depressed or very anxious any more but I do get bouts of it. Thyroid medication has taken care of most of it." Anxiety can be a major aspect of Lyme ... I still get it but it's much less than it was. I too am now on thyroid meds, and it does help a great deal. I have read that Lyme greatly affects the endocrine system, including the thyroid.
re numbness and blurred vision: these are not uncommon, tho I don't have the numbness (mine is more the achy variety), but do have vision that comes and goes -- I think from swelling.
You say: "It effects the way I walk as I can't feel the ground beneath my foot properly so constantly in fear of falling over." My balance is sometimes affected, esp when walking around a corner ... I feel like one of those little cartoon cars that goes up on two wheels and seems about to tip over, but I never do.
"I suffer terrible migraines with the pain centering around the right temple. I feel mildy dizzy all the time with vertigo at times. I suffer with very bad brain fog and a 'spaced out' feeling in my head, leaving me feeling very detached and like I am watching real life on TV. Fatigue is a very bad problem for me all the time." I am lucky not to have bad headaches, but fatigue and spaciness were very much a problem before I was treated.
"Occasionally I will experience crawling sensations on the LEFT side of my face. I have low-normal blood pressure that goes as low as 90/60 at times. My fingernails often turn blue (possibly related to my thyroid condition?)." My body temp is chronically low, but now that I am on thyroid meds, it's better. My BP was always 110/70 pre-Lyme, but now is like yours: 90/60 or even a bit lower. It's Lyme mucking with the endocrine system. I salt up my food and it helps.
"I've had several MRIs, CT scans, brain angios, countless blood tests - all completely clear with no leisons or anything abnormal." To my understanding, these tests don't usually show anything related to Lyme. A SPECT scan is sometimes ordered by LLMDs, because it tracks perfusion in the brain, that is, where the blood is flowing and where it is not. When I was first diagnosed, my SPECT scan was a wreck.
"I have autoimmune thyroid disease which I am optimally treated for (have tried many variatons of the meds) and the meds have resolved lots of things for me but not enough to get a good quality of life back." It may be that thyroid is taken care of for the most part, but it's the other aspects not yet treated that are still troubling you.
"I've looked in food intolerances and adrenal insufficency but not come up with anything apart from severe Vitamin D deficiency - was 10< but now up to 75 with treatment. I supplement with B12 to be on the safe side." I too supplement a bunch of things, but not with Vitamin D. There is a divide in the medical community, as I read it (not medically trained here!), and the side against supplementing with Vitamin D says that Vitamin D is an immune suppressor, and when the Vitamin D levels are low, it is because the immune system is active against a disease, so taking add'l Vitamin D will only suppress your immune system, which is the opposite of what should be done. I do not know the correct answer here, but if you want to see how thoroughly confused the medical/scientific community is, go to wikipedia's entry called Vitamin D.
"A short course of steroids made the symptoms LOTS worse and it spread to my left (that reduced once the meds were withdrawn)." Steroids suppress the immune system, so they are contraindicated in Lyme, which is a bacterial disease and needs the immune system working to kill the bacteria. This is not uncommonly what MDs do, without understanding what they are up to.
"It's also much worse in the week leading to my period." This is a not uncommon comment.
"Occasionally when my thyroid meds are too high it will make it worse also." Don't know about this one.
"Last week I tested negative for the ELISA Lyme test and am wondering if I should continue to pursue a diagnosis (which would mean spending lots of money on testing)."
The ELISA test and its companion Western blot are notoriously inaccurate, but they are the only tests commonly used by nonLLMDs. Lyme, so I read, should be diagnosed not based on the tests, but on history and symptoms *informed by the test results.* It's like medicine used to be: the MD has to use his/her brain and education and not just read the test. Unfortunately too many nonLLMDs tend to lean very heavily on the test, partly because of the controversy about Lyme.
Lyme will not simply go away by itself, and spending money at some level is the only way to get rid of it. Some people use herbal treatments, and you might want to explore that approach if you are not able to afford additional testing and treatment.
"In the last 6 weeks or so I have also developed oral thrush so am also looking at candida as a possiblity." It got a nasty systemic fungal infection a while back, and it is interesting to look back now and see that neither my LLMD nor I realized what was happening, because the symptoms of Lyme (at least for me) and the symptoms of fungus were very very similar ... brain fog, aching, tiredness. Respecting the fungus and treating it into submission or extinction is important not only for your general health, of course, but also if you decide to take an anbiotic treatment for Lyme and any other coinfections you may have. I would encourage you to make sure your MD is paying attention to this aspect. There are also other fungi besides candida, tho candida is the most common. Some antifungal treatments attack both, but if your treatment is not successful fairly fast, then I would ask your MD about testing for its susceptibility to various meds to be sure you are on the right one."
There are some UK Lyme groups with websites in the UK. Here are two of them:
Lyme Disease Action
Borreliosis & Associated Diseases Awareness
I don't know anything about them, but they are listed as a reference on the ILADS [dot] org website, which is by the premier LLMD organization in the US. There are also others I have run across at various times. Check them out and see what you find -- it's always good to keep digging for information and to help you find a good LLMD to treat you if you decide you need to make a lateral move that way.
Best wishes -- let us know how you do!
Here are a few comments in addition to Gorby's good points ---
You say: "I am not very depressed or very anxious any more but I do get bouts of it. Thyroid medication has taken care of most of it." Anxiety can be a major aspect of Lyme ... I still get it but it's much less than it was. I too am now on thyroid meds, and it does help a great deal. I have read that Lyme greatly affects the endocrine system, including the thyroid.
re numbness and blurred vision: these are not uncommon, tho I don't have the numbness (mine is more the achy variety), but do have vision that comes and goes -- I think from swelling.
You say: "It effects the way I walk as I can't feel the ground beneath my foot properly so constantly in fear of falling over." My balance is sometimes affected, esp when walking around a corner ... I feel like one of those little cartoon cars that goes up on two wheels and seems about to tip over, but I never do.
"I suffer terrible migraines with the pain centering around the right temple. I feel mildy dizzy all the time with vertigo at times. I suffer with very bad brain fog and a 'spaced out' feeling in my head, leaving me feeling very detached and like I am watching real life on TV. Fatigue is a very bad problem for me all the time." I am lucky not to have bad headaches, but fatigue and spaciness were very much a problem before I was treated.
"Occasionally I will experience crawling sensations on the LEFT side of my face. I have low-normal blood pressure that goes as low as 90/60 at times. My fingernails often turn blue (possibly related to my thyroid condition?)." My body temp is chronically low, but now that I am on thyroid meds, it's better. My BP was always 110/70 pre-Lyme, but now is like yours: 90/60 or even a bit lower. It's Lyme mucking with the endocrine system. I salt up my food and it helps.
"I've had several MRIs, CT scans, brain angios, countless blood tests - all completely clear with no leisons or anything abnormal." To my understanding, these tests don't usually show anything related to Lyme. A SPECT scan is sometimes ordered by LLMDs, because it tracks perfusion in the brain, that is, where the blood is flowing and where it is not. When I was first diagnosed, my SPECT scan was a wreck.
"I have autoimmune thyroid disease which I am optimally treated for (have tried many variatons of the meds) and the meds have resolved lots of things for me but not enough to get a good quality of life back." It may be that thyroid is taken care of for the most part, but it's the other aspects not yet treated that are still troubling you.
"I've looked in food intolerances and adrenal insufficency but not come up with anything apart from severe Vitamin D deficiency - was 10< but now up to 75 with treatment. I supplement with B12 to be on the safe side." I too supplement a bunch of things, but not with Vitamin D. There is a divide in the medical community, as I read it (not medically trained here!), and the side against supplementing with Vitamin D says that Vitamin D is an immune suppressor, and when the Vitamin D levels are low, it is because the immune system is active against a disease, so taking add'l Vitamin D will only suppress your immune system, which is the opposite of what should be done. I do not know the correct answer here, but if you want to see how thoroughly confused the medical/scientific community is, go to wikipedia's entry called Vitamin D.
"A short course of steroids made the symptoms LOTS worse and it spread to my left (that reduced once the meds were withdrawn)." Steroids suppress the immune system, so they are contraindicated in Lyme, which is a bacterial disease and needs the immune system working to kill the bacteria. This is not uncommonly what MDs do, without understanding what they are up to.
"It's also much worse in the week leading to my period." This is a not uncommon comment.
"Occasionally when my thyroid meds are too high it will make it worse also." Don't know about this one.
"Last week I tested negative for the ELISA Lyme test and am wondering if I should continue to pursue a diagnosis (which would mean spending lots of money on testing)."
The ELISA test and its companion Western blot are notoriously inaccurate, but they are the only tests commonly used by nonLLMDs. Lyme, so I read, should be diagnosed not based on the tests, but on history and symptoms *informed by the test results.* It's like medicine used to be: the MD has to use his/her brain and education and not just read the test. Unfortunately too many nonLLMDs tend to lean very heavily on the test, partly because of the controversy about Lyme.
Lyme will not simply go away by itself, and spending money at some level is the only way to get rid of it. Some people use herbal treatments, and you might want to explore that approach if you are not able to afford additional testing and treatment.
"In the last 6 weeks or so I have also developed oral thrush so am also looking at candida as a possiblity." It got a nasty systemic fungal infection a while back, and it is interesting to look back now and see that neither my LLMD nor I realized what was happening, because the symptoms of Lyme (at least for me) and the symptoms of fungus were very very similar ... brain fog, aching, tiredness. Respecting the fungus and treating it into submission or extinction is important not only for your general health, of course, but also if you decide to take an anbiotic treatment for Lyme and any other coinfections you may have. I would encourage you to make sure your MD is paying attention to this aspect. There are also other fungi besides candida, tho candida is the most common. Some antifungal treatments attack both, but if your treatment is not successful fairly fast, then I would ask your MD about testing for its susceptibility to various meds to be sure you are on the right one."
There are some UK Lyme groups with websites in the UK. Here are two of them:
Lyme Disease Action
Borreliosis & Associated Diseases Awareness
I don't know anything about them, but they are listed as a reference on the ILADS [dot] org website, which is by the premier LLMD organization in the US. There are also others I have run across at various times. Check them out and see what you find -- it's always good to keep digging for information and to help you find a good LLMD to treat you if you decide you need to make a lateral move that way.
Best wishes -- let us know how you do!
Hello, there are more knowledgeable folk here who I am sure will respond to your post - but I was reading through your post thinking with all those negative tests and the 'symptoms worse the week before monthly is due' - it is sounding a lot like lyme /tick-borne infection. The numbness is quite common with lyme disease - but as I am sure you know there are many different possible symptoms with lyme disease.
Lyme testing is not reliable and I would advise you to find a 'lyme literate medical doctor ' [LLMD.] That is how I would spend my money, initially anyway. I and others here have been treated on symptoms alone without ever having the disease confirmed by tests.
There is however a lab. called 'IGENEX' that are reccommended for tick-borne disease testing, from what I have researched their results are more detailed but really it would be an LLMD. that would best be able to interprit your results.
I am sure you will have lots more advice here - concerning the 'thrush' too.
Gorbs
Lyme testing is not reliable and I would advise you to find a 'lyme literate medical doctor ' [LLMD.] That is how I would spend my money, initially anyway. I and others here have been treated on symptoms alone without ever having the disease confirmed by tests.
There is however a lab. called 'IGENEX' that are reccommended for tick-borne disease testing, from what I have researched their results are more detailed but really it would be an LLMD. that would best be able to interprit your results.
I am sure you will have lots more advice here - concerning the 'thrush' too.
Gorbs
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