Aa
I need information from Lyme Patients please
I post this because I need information from people that know what they are talking about from experience, not something I google. I understand that a symptom of LD may be muscle weakness. Is it possible that muscle weakness is only on one side of the body? Or is it always the whole body. I ask because I have been fighting workman's comp for an injury to my left shoulder area. I believed it to be a repetative motion injury. It has been going on for over a year now. I notice that my left shoulder joint, left hip, left knee seem to be weak/shaky if I put my weight on that side. Does not seem to be on the right. One WC doc interrogated me for an hour about any possible causes, other than work, on me 4 or 5th trip to see him. LD was suggested, but wc would require approval etc. I told him if I needed to be tested, I have private insurance. Nothing. I have had moodiness and some amount of fatigue. I do not mean to insult anyone struggling with this disease, as I know much of this could be related to other things. I do live in a concerning area and have had to remove ticks from several pets. I am unaware of any tick bite to myself.
I am just hoping for a bit of firsthand knowledge to satisfy my mind, wondering if I have been living with something that could be solved.
I am just hoping for a bit of firsthand knowledge to satisfy my mind, wondering if I have been living with something that could be solved.
Welcome to this corner of MedHelp -- I see you spend time on the women's health page.
About weakness on one side, I don't know, but Lyme is mysterious in its presentations. It's good to think big thoughts. And don't worry about insulting us -- we're a tough bunch!
Lyme is a strange illness ... it affects everyone differently. Some get neurological Lyme, some more in the joints, and to make matters worse, about half the Lyme ticks also carry other diseases unrelated to Lyme ("co-infections"). These have their own sweet sets of symptoms and when combined with Lyme, it really messes with the diagnostic picture.
Lyme is caused by a spiral-shaped bacterium, in the same family as syphilis, and syphilis used to be called 'the great imitator' because it presented symptoms like many other diseases. Lyme affects each of us differently, so it's good you're keeping an open mind to the possibilities.
Some docs won't diagnose Lyme unless you've seen tiny tick that bit you and you get a round red rash that clears in the center like a bullseye. I had a cracking good case of Lyme and I never had either tick or rash.
Bad news is that the so-called standard tests for Lyme are not very accurate, but docs swear by them for some odd reason.
If you've been infected for a while, your immune system may have stopped reacting to the infection, so it wont' make antibodies against Lyme, and the standard Lyme tests look for the antibodies. (Also Lyme has the ability to suppress the immune system so it doesn't make antibodies for the test to find.) So, yes, you can have Lyme and test negative. The co-infections have separate tests, and which tests to take are based on your symptoms, which a wise doc will be on the look out for.
I know, this is sounding like a much bigger job than you have the time or energy for. But believe me, it's worth it.
You might go to ILADS [ dot ] org and look for Burrascano's treatment guidelines. It's a long rambling mess that keeps getting added to, but it's eye-opening when trying to understand the amazing variety of symptoms Lyme and the co-infections can bring.
A Lyme specialist (we call them LLMDs for shorthand, meaning a 'Lyme-literate MD') will understand all this and will know what tests and possible diagnoses you could have. Insurance companies are often not Lyme-friendly, but the doc you are seeing has possibilities, so you may be in a good position to chart your way through to getting well.
And if you don't have Lyme, an LLMD will be the first to say so. The trick will be coming up with test evidence that the insurance will accept as proof of disability and illness, but once you know what ailment(s) you are dealing with, you'll be able to figure out how to present your case.
The important thing is to get you well, and ruling out Lyme would be a good step ... or treating it, if you have it!
Let us know how we can help --
About weakness on one side, I don't know, but Lyme is mysterious in its presentations. It's good to think big thoughts. And don't worry about insulting us -- we're a tough bunch!
Lyme is a strange illness ... it affects everyone differently. Some get neurological Lyme, some more in the joints, and to make matters worse, about half the Lyme ticks also carry other diseases unrelated to Lyme ("co-infections"). These have their own sweet sets of symptoms and when combined with Lyme, it really messes with the diagnostic picture.
Lyme is caused by a spiral-shaped bacterium, in the same family as syphilis, and syphilis used to be called 'the great imitator' because it presented symptoms like many other diseases. Lyme affects each of us differently, so it's good you're keeping an open mind to the possibilities.
Some docs won't diagnose Lyme unless you've seen tiny tick that bit you and you get a round red rash that clears in the center like a bullseye. I had a cracking good case of Lyme and I never had either tick or rash.
Bad news is that the so-called standard tests for Lyme are not very accurate, but docs swear by them for some odd reason.
If you've been infected for a while, your immune system may have stopped reacting to the infection, so it wont' make antibodies against Lyme, and the standard Lyme tests look for the antibodies. (Also Lyme has the ability to suppress the immune system so it doesn't make antibodies for the test to find.) So, yes, you can have Lyme and test negative. The co-infections have separate tests, and which tests to take are based on your symptoms, which a wise doc will be on the look out for.
I know, this is sounding like a much bigger job than you have the time or energy for. But believe me, it's worth it.
You might go to ILADS [ dot ] org and look for Burrascano's treatment guidelines. It's a long rambling mess that keeps getting added to, but it's eye-opening when trying to understand the amazing variety of symptoms Lyme and the co-infections can bring.
A Lyme specialist (we call them LLMDs for shorthand, meaning a 'Lyme-literate MD') will understand all this and will know what tests and possible diagnoses you could have. Insurance companies are often not Lyme-friendly, but the doc you are seeing has possibilities, so you may be in a good position to chart your way through to getting well.
And if you don't have Lyme, an LLMD will be the first to say so. The trick will be coming up with test evidence that the insurance will accept as proof of disability and illness, but once you know what ailment(s) you are dealing with, you'll be able to figure out how to present your case.
The important thing is to get you well, and ruling out Lyme would be a good step ... or treating it, if you have it!
Let us know how we can help --
Usually, someone with Lyme will have more symptoms than you describe. But then, sometimes those symptoms develop over time. You could be early in the progression still.
Yes, Lyme does cause muscle weakness, moodiness and fatigue. But unfortunately, so does Multiple Sclerosis. In MS, an attack of muscle weakness is usually just on one side of the body. Lyme can mimic MS, but where it differs is that its symptoms move around and also come and go and come again (sometimes daily). I had tingling that started on the right side only (arm and leg) and then went away. Months later, my left thigh would tingle, and it would travel to the right for short jaunts, and then come back to the left. MS doesn't do that.
Have you had any other symptoms that you haven't connected to your shoulder injury or muscle weakness, such as vision variations (floaters, blurry spots, sparkles, light sensitivity), tinnitus, digestive problems, speech problems, writing mistakes, mental confusion, ridges in your nails, change in sense of taste, or anything else that seems off? Lyme can affect a remarkable number of things all across the body. It also likes connective tissue, scar tissue, and tends to flare up out of nowhere after an injury or other big stress.
I also encourage you to go see an LLMD. Try a local Lyme support group, too. Ask which local docs know enough about Lyme to give you a good workup. Standard lab tests are often false negative so a basic blood test from your regular GP might not be helpful. If you do have Lyme, it is good news in that it is treatable with antibiotics.
Yes, Lyme does cause muscle weakness, moodiness and fatigue. But unfortunately, so does Multiple Sclerosis. In MS, an attack of muscle weakness is usually just on one side of the body. Lyme can mimic MS, but where it differs is that its symptoms move around and also come and go and come again (sometimes daily). I had tingling that started on the right side only (arm and leg) and then went away. Months later, my left thigh would tingle, and it would travel to the right for short jaunts, and then come back to the left. MS doesn't do that.
Have you had any other symptoms that you haven't connected to your shoulder injury or muscle weakness, such as vision variations (floaters, blurry spots, sparkles, light sensitivity), tinnitus, digestive problems, speech problems, writing mistakes, mental confusion, ridges in your nails, change in sense of taste, or anything else that seems off? Lyme can affect a remarkable number of things all across the body. It also likes connective tissue, scar tissue, and tends to flare up out of nowhere after an injury or other big stress.
I also encourage you to go see an LLMD. Try a local Lyme support group, too. Ask which local docs know enough about Lyme to give you a good workup. Standard lab tests are often false negative so a basic blood test from your regular GP might not be helpful. If you do have Lyme, it is good news in that it is treatable with antibiotics.
Thank you for your responses. Yes, a few things seem off. Could be nothing, I guess. I have needed my glasses much more than usual in the past months. Blurred vision, mostly, but I do have a mild astigmatism and have not seen an eye doctor in 2 years. My nails are not real spectacular, but I noticed that there is a definate lengthwise ridge on my ring finger. Writing mistakes come out when typing, I figured I was tired. Taste has been a bit off, but I thought it was because of my excessive use of total toothpaste while having my teeth straightened. Everything I thought was just random, may add up to something bigger, ot maybe it is just random.
You mentioned stress flaring LD. I seem to break out in hives after I get stressed, sometimes when I am not. I have never in my life had hives other than this last 8 months or so. I thought it was an allergic reaction to NSAIDS, which I did not know I was allergic to because I used to be able to pop a couple advil with no issue. Now I break out if I touch any of them. I had hundred pf spots pop up, treated with prednisone. Happened a couple weeks later, after I was having a random panic attack at a crowded wedding that was getting rowdy, was told I had scabies, yet there was no other case of it in my household. Happened again a few weeks later while stressing over another wedding and chose not to bother seeing a dr. over it. Each time it went through the same cycle regardless of treatment.
I had a small break out a couple weeks ago.
Also connected to my shoulder (L) is my left hand has become noticeably clumsier than it should be. I am a righty, but my left is just not cooperating like it should. I assume it has something to do with the injury to my shoulder, but I am being dismissed by WC docs who want to believe it is a muscle injury, yet is not going away even with physical therapy.
You mentioned stress flaring LD. I seem to break out in hives after I get stressed, sometimes when I am not. I have never in my life had hives other than this last 8 months or so. I thought it was an allergic reaction to NSAIDS, which I did not know I was allergic to because I used to be able to pop a couple advil with no issue. Now I break out if I touch any of them. I had hundred pf spots pop up, treated with prednisone. Happened a couple weeks later, after I was having a random panic attack at a crowded wedding that was getting rowdy, was told I had scabies, yet there was no other case of it in my household. Happened again a few weeks later while stressing over another wedding and chose not to bother seeing a dr. over it. Each time it went through the same cycle regardless of treatment.
I had a small break out a couple weeks ago.
Also connected to my shoulder (L) is my left hand has become noticeably clumsier than it should be. I am a righty, but my left is just not cooperating like it should. I assume it has something to do with the injury to my shoulder, but I am being dismissed by WC docs who want to believe it is a muscle injury, yet is not going away even with physical therapy.
A couple of things come to mind:
-- How did you feel when you were taking the prednisone?
-- You say above: "LD [Lyme disease, I assume?] was suggested, but wc [workers comp?] would require approval etc. I told him if I needed to be tested, I have private insurance. Nothing."
Meaning, the doc didn't pursue the possibility of Lyme and wouldn't order any tests? Why not go see a Lyme doc on your own, apart from the workers comp issues? I would. You might even get a better answer by choosing your own Lyme doc than whoever the workers comp doc might refer you to, because not all docs 'believe' in Lyme.
-- And you mention that you have private insurance. Use it to go see a Lyme doc. Even if you don't turn out to have Lyme, you would be seeing a doc who is accustomed to thinking outside the box and might be able to give you some guidance on what it might be that is ailing you.
Let us know how it goes, okay?
-- How did you feel when you were taking the prednisone?
-- You say above: "LD [Lyme disease, I assume?] was suggested, but wc [workers comp?] would require approval etc. I told him if I needed to be tested, I have private insurance. Nothing."
Meaning, the doc didn't pursue the possibility of Lyme and wouldn't order any tests? Why not go see a Lyme doc on your own, apart from the workers comp issues? I would. You might even get a better answer by choosing your own Lyme doc than whoever the workers comp doc might refer you to, because not all docs 'believe' in Lyme.
-- And you mention that you have private insurance. Use it to go see a Lyme doc. Even if you don't turn out to have Lyme, you would be seeing a doc who is accustomed to thinking outside the box and might be able to give you some guidance on what it might be that is ailing you.
Let us know how it goes, okay?
and PS, do go see an ophthalmologist. You say it's been two years, and your medical insurance would cover an ophthalmologist visit, since they are MDs. When I was first diagnosed with Lyme, I went to see my ophthalmologist for a regular check up, and when I told him I had Lyme, I was kind of apologetic about it, because I already knew that a lot of docs think Lyme is a mind problem, not a bug problem. To my surprise, the ophthalmologist took it VERY seriously, and it turns out that they are one branch of medicine that doesn't think we're nuts or making it up. It was great to be treated seriously.
Go for it.
Go for it.
Thank you, JackieCalifornia. I feel like such a hypochondriac, since it seems like I have been fine for my whole life, up until the last year.
My mother in law had a tick last summer, negative result, only to find out later that another test sent to CA found she was positive(same doc I had for WC). Its hard to get much insight from her, as she has a whole lot of other stuff going on.
I feel like my first doc thinks I'm faking an injury. Referred to an ortho who was booked solid, so his PA is brushing me off.
I just need to have some solid information so I can go to the doctor without sounding like I am crazy, lol. I appreciate your help.
Any thoughts on skin rashes(associated with LD), aside from the bulls eye that may or may not present?
My mother in law had a tick last summer, negative result, only to find out later that another test sent to CA found she was positive(same doc I had for WC). Its hard to get much insight from her, as she has a whole lot of other stuff going on.
I feel like my first doc thinks I'm faking an injury. Referred to an ortho who was booked solid, so his PA is brushing me off.
I just need to have some solid information so I can go to the doctor without sounding like I am crazy, lol. I appreciate your help.
Any thoughts on skin rashes(associated with LD), aside from the bulls eye that may or may not present?
Ease up on yourself! You're not faking, because if you were, you'd have a much more enjoyable and creative ailment, I'm sure. Lyme is just ... a hassle. Nobody would make this garbage up. :)
Docs (other than LLMDs) really don't understand Lyme because they go by what the infectious disease docs say, which is that Lyme is hard to get and easy to cure and only happens in New England. Blah blah blah. So that your ortho(pedist?) brushes you off just means go at it from another angle.
I saw 20 (count 'em: 20) docs before I found one who kindly ran Lyme test out of desperation, and when it came back positive, she gently told me I couldn't possibly have Lyme. I took the test results and found an LLMD, and I got well. So you gotta go to a Lyme specialist. Anything else is a waste of time and energy, but also know that not all LLMDs are created equal: there are some total quacks out there with wild ideas, just keep your skeptical hat on as you navigate the waters.
The tests are not very accurate, so getting a false negative result (meaning you have the infection but the test falsely says you don't) is not uncommon. The second test your mother in law had was probably sent to IGeneX labs in California -- they do a completely different kind of testing than the basic Western blot and ELISA tests that most nonLLMDs use and rely on. W.blot and ELISA are useful, but they are often wrong, tho nonLLMDs don't recognize that.
In a disease in which the tests are so faulty, it is all the more important to have a wise and broad minded doc. I don't see in your profile or posts what state you are in -- some states don't have a lot of LLMDs, but with a little snooping around you can usually find one. Let us know whereabouts you live ("Kansas City") and we can give you ideas how to find a doc.
The rashes you are having may or may not be Lyme-related ... but remember to always keep the co-infections in mind. They are totally separate diseases from Lyme, with their own symptoms and cures.
I never saw a tick or a rash on me, but I had a gigantic case of Lyme and babesiosis (like malaria). There are at least half a dozen other diseases the Lyme ticks often carry (like half the time), and the mixing and matching of those with a compromised immune system causes all sorts of oddities in the symptoms. Lyme suppresses your immune system, so other infections also get a break from being hunted down and killed. Complicated.
How did you feel on the prednisone? Same, worse, better?
Docs (other than LLMDs) really don't understand Lyme because they go by what the infectious disease docs say, which is that Lyme is hard to get and easy to cure and only happens in New England. Blah blah blah. So that your ortho(pedist?) brushes you off just means go at it from another angle.
I saw 20 (count 'em: 20) docs before I found one who kindly ran Lyme test out of desperation, and when it came back positive, she gently told me I couldn't possibly have Lyme. I took the test results and found an LLMD, and I got well. So you gotta go to a Lyme specialist. Anything else is a waste of time and energy, but also know that not all LLMDs are created equal: there are some total quacks out there with wild ideas, just keep your skeptical hat on as you navigate the waters.
The tests are not very accurate, so getting a false negative result (meaning you have the infection but the test falsely says you don't) is not uncommon. The second test your mother in law had was probably sent to IGeneX labs in California -- they do a completely different kind of testing than the basic Western blot and ELISA tests that most nonLLMDs use and rely on. W.blot and ELISA are useful, but they are often wrong, tho nonLLMDs don't recognize that.
In a disease in which the tests are so faulty, it is all the more important to have a wise and broad minded doc. I don't see in your profile or posts what state you are in -- some states don't have a lot of LLMDs, but with a little snooping around you can usually find one. Let us know whereabouts you live ("Kansas City") and we can give you ideas how to find a doc.
The rashes you are having may or may not be Lyme-related ... but remember to always keep the co-infections in mind. They are totally separate diseases from Lyme, with their own symptoms and cures.
I never saw a tick or a rash on me, but I had a gigantic case of Lyme and babesiosis (like malaria). There are at least half a dozen other diseases the Lyme ticks often carry (like half the time), and the mixing and matching of those with a compromised immune system causes all sorts of oddities in the symptoms. Lyme suppresses your immune system, so other infections also get a break from being hunted down and killed. Complicated.
How did you feel on the prednisone? Same, worse, better?
Based on what I know about the cause of weakness in Lyme disease, and on my own experience over 28 years with lyme, and all the patients I've talked to, I think it is always a whole body thing, not one sided.
I's basically a biochemical thing in the body rather than an attack on specific nerves or muscles. When lyme directly attacks nerves you get tingling, numbness or pain but not weakness. Weakness comes from glutathione depletion, accumulation of toxins (ammonia and others) and interuption of thekrebs cycle which releases toxins and fails to make energy out of glucose and oxygen. All those things have to happen to your whole body, they cannot just occur on one side.
The only one-sided thing that can happen with lyme is bells palsy which causes total paralysis of one side of the face.
The symptoms you describe do remind me an awful lot of my aunt, and a lady I met in hospital, after having mild strokes. It's amazing how many people can have a stroke without realising it.
My aunt had a condition that made her repeatedly have very small strokes, so it seemed as if she had a slow degenerating illnes of some kind. Meanwhile her doctor kept prescribing her antidepressants as he believed it was all psychological!
I just wanted to throw that out there as something for you to look into.
I's basically a biochemical thing in the body rather than an attack on specific nerves or muscles. When lyme directly attacks nerves you get tingling, numbness or pain but not weakness. Weakness comes from glutathione depletion, accumulation of toxins (ammonia and others) and interuption of thekrebs cycle which releases toxins and fails to make energy out of glucose and oxygen. All those things have to happen to your whole body, they cannot just occur on one side.
The only one-sided thing that can happen with lyme is bells palsy which causes total paralysis of one side of the face.
The symptoms you describe do remind me an awful lot of my aunt, and a lady I met in hospital, after having mild strokes. It's amazing how many people can have a stroke without realising it.
My aunt had a condition that made her repeatedly have very small strokes, so it seemed as if she had a slow degenerating illnes of some kind. Meanwhile her doctor kept prescribing her antidepressants as he believed it was all psychological!
I just wanted to throw that out there as something for you to look into.
I'm not medically trained, so can't diagnose you, but I too am leaning to the idea that you may not have Lyme, for the reasons that Youvegot mentions above.
I asked above about your reaction to the prednisone, because it is designed to suppress the immune system in a situation where it is overreacting and attacking your own body. If you felt better on predisone, or at least felt the same, I am guessing you are less likely to have Lyme, because Lyme is an infectious disease, and when your immune system is suppressed by taking steroids like prednisone, you feel worse, not the same or better.
It's also possible you have Lyme AND another ailment, which always confuses the docs. I would do what you are, methodically ruling out one thing after another, until you end up with what's left and take it from there.
Is there someone, a friend or family, who can help you sort through the possibilities? I know how hard it is when you're so ill and are given the job of also figuring out WHY you're ill .... so find reinforcements, and feel free to bounce things off us. We don't see Lyme everywhere we look, as Youvegot's comment shows, but our limitation is that we're not medically trained. We are glad to be a sounding board, tho, and give you ideas of what we would try next.
Please let us know how you do, okay? We're always hanging around the watercooler here. Take care --
I asked above about your reaction to the prednisone, because it is designed to suppress the immune system in a situation where it is overreacting and attacking your own body. If you felt better on predisone, or at least felt the same, I am guessing you are less likely to have Lyme, because Lyme is an infectious disease, and when your immune system is suppressed by taking steroids like prednisone, you feel worse, not the same or better.
It's also possible you have Lyme AND another ailment, which always confuses the docs. I would do what you are, methodically ruling out one thing after another, until you end up with what's left and take it from there.
Is there someone, a friend or family, who can help you sort through the possibilities? I know how hard it is when you're so ill and are given the job of also figuring out WHY you're ill .... so find reinforcements, and feel free to bounce things off us. We don't see Lyme everywhere we look, as Youvegot's comment shows, but our limitation is that we're not medically trained. We are glad to be a sounding board, tho, and give you ideas of what we would try next.
Please let us know how you do, okay? We're always hanging around the watercooler here. Take care --
Everyone is different but when it happened to me, it was on both sides. I remember not being able to open the dryer door with both hands and the same with the fridge.
Regarding the hives or skin rashes, you should most definitely take good photos of them as soon as they crop up so you can show them to the doctor. Write down when they appear and how long they last, how many etc.
I've had hives that may have been a lyme rash, I still don't know.
In my experience rashes always vanish just when your appointment comes around then reappear as soon as you're out of the doctor's surgery!!! he needs pictures as descriptions are not really enough to go on.
Lyme disease and other tick borne diseases can cause a huge variety of rakin rashes, I'd do some online searches on lyme and also bartonella to compare your hives to what comes up.
I've had hives that may have been a lyme rash, I still don't know.
In my experience rashes always vanish just when your appointment comes around then reappear as soon as you're out of the doctor's surgery!!! he needs pictures as descriptions are not really enough to go on.
Lyme disease and other tick borne diseases can cause a huge variety of rakin rashes, I'd do some online searches on lyme and also bartonella to compare your hives to what comes up.
What is interesting about your left side weakess is that you primarily describe joints. While muscle weakness only on one side is more indicative of MS or another disorder, Lyme is famous for going for the major joints. Your hip and knee wobbliness could be from Lyme, while the shoulder could hurt because Lyme invaded the location of the injury. It likes scar tissue.
Some people don't even have symptoms until after an injury, as Lyme takes advantage of a stressed body with suppressed immune system to flare up.
The ridge on your fingernail, blurriness, writing/typing mistakes, and chemical sensitivites/new allergies are all known symptoms of Lyme. I had all but the fingernail ridges. I also hadn't been to the eye doc in 2 years, and thought my astigmatism was getting a bit worse. I got an exam, and 2 weeks later when my lenses arrived, the right one was a bit off. I had it redone twice, after which they wrecked my frames. The new replacement frames were a bit bigger, and the new lenses in that one were good enough. It was a long time before I realized the blurry spot on the right was from Lyme. Now, I need to go get them redone again as my vision has settled back down.
Getting clumsy and having random panic attacks are also symptoms of Lyme, especially if you didn't have them before your other symptoms. One consideration for Lyme Disease is a patient who was healthy up to a point, after which numerous symptoms developed. Also, patients with various multi-systemic problems who say, "I feel like a hypochondriac!" raise a big red flag. I didn't even tell my neuro in the hospital about every single symptom as I could tell she was skeptical and seemed in hurry to go off and do something else. She took the worst history I've ever experienced. I thought for sure she'd call in the psychiatrist if I told her everything. (Note: I found a very detailed symptom list on another message board and I had more than 80. Only Lyme causes that many!)
I've also read about others who had outbreaks of hives after getting Lyme, although I haven't had them myself. I didn't develop new allergies, but I did have drug sensitivities. I seemed hypersensitive to everything. My seasonal allergies disappeared, even in blood tests. My immune system was suppressed. Unfortunately they're back this year. I was hoping my immune system forgot about them! No such luck.
What convinced me I had Lyme was finding the Burrascano symptom check list. You can find it on lymedisease.org under 'About Lyme' and 'Treatment Guidelines'. It's in a document titled "Advanced tips..." It's written for doctors, but the symptom list is widely used by LLMDs.
There's no hard and fast criteria to qualify for a Lyme Disease diagnosis. No single symptom is required. Many don't get the rash. Some don't get joint or muscle pain. Some don't even get fatigue. It's the collection of symptoms that points to Lyme, along with the history and supporting test results. This makes it a clinical diagnosis.
I encourage you to also get tested at IGeneX. That's the specialty lab your mother was probably tested at. They do more advanced testing than the standard labs do. They also show more relevant "bands" on the Western Blot test. The CDC interpretation of the test ignores some Lyme specific bands that could help with a diagnosis. It's a terrible interpretation as the screening test and Western Blot leave nearly half of patients testing false negative. The criteria was developed as a sampling criteria for surveillance. I am not sure how doctors came to think it was a diagnostic absolute.
I was false negative on a screening test and CSF antibody test. I was IGeneX positive on my Western Blot at IGeneX, although the CDC says I was still "negative."
Some people don't even have symptoms until after an injury, as Lyme takes advantage of a stressed body with suppressed immune system to flare up.
The ridge on your fingernail, blurriness, writing/typing mistakes, and chemical sensitivites/new allergies are all known symptoms of Lyme. I had all but the fingernail ridges. I also hadn't been to the eye doc in 2 years, and thought my astigmatism was getting a bit worse. I got an exam, and 2 weeks later when my lenses arrived, the right one was a bit off. I had it redone twice, after which they wrecked my frames. The new replacement frames were a bit bigger, and the new lenses in that one were good enough. It was a long time before I realized the blurry spot on the right was from Lyme. Now, I need to go get them redone again as my vision has settled back down.
Getting clumsy and having random panic attacks are also symptoms of Lyme, especially if you didn't have them before your other symptoms. One consideration for Lyme Disease is a patient who was healthy up to a point, after which numerous symptoms developed. Also, patients with various multi-systemic problems who say, "I feel like a hypochondriac!" raise a big red flag. I didn't even tell my neuro in the hospital about every single symptom as I could tell she was skeptical and seemed in hurry to go off and do something else. She took the worst history I've ever experienced. I thought for sure she'd call in the psychiatrist if I told her everything. (Note: I found a very detailed symptom list on another message board and I had more than 80. Only Lyme causes that many!)
I've also read about others who had outbreaks of hives after getting Lyme, although I haven't had them myself. I didn't develop new allergies, but I did have drug sensitivities. I seemed hypersensitive to everything. My seasonal allergies disappeared, even in blood tests. My immune system was suppressed. Unfortunately they're back this year. I was hoping my immune system forgot about them! No such luck.
What convinced me I had Lyme was finding the Burrascano symptom check list. You can find it on lymedisease.org under 'About Lyme' and 'Treatment Guidelines'. It's in a document titled "Advanced tips..." It's written for doctors, but the symptom list is widely used by LLMDs.
There's no hard and fast criteria to qualify for a Lyme Disease diagnosis. No single symptom is required. Many don't get the rash. Some don't get joint or muscle pain. Some don't even get fatigue. It's the collection of symptoms that points to Lyme, along with the history and supporting test results. This makes it a clinical diagnosis.
I encourage you to also get tested at IGeneX. That's the specialty lab your mother was probably tested at. They do more advanced testing than the standard labs do. They also show more relevant "bands" on the Western Blot test. The CDC interpretation of the test ignores some Lyme specific bands that could help with a diagnosis. It's a terrible interpretation as the screening test and Western Blot leave nearly half of patients testing false negative. The criteria was developed as a sampling criteria for surveillance. I am not sure how doctors came to think it was a diagnostic absolute.
I was false negative on a screening test and CSF antibody test. I was IGeneX positive on my Western Blot at IGeneX, although the CDC says I was still "negative."
My bad, it was methylprednisolone, I think. I believe it is in the same family? Don't claim to be a pharmacist, though lol. I think I had it for a week, descending dose. I don't remember feeling much different, although it did seem to set me in to a state of panic. The pharmacist told me it might wind me right up, he wasn't wrong. As I recall I notice I was covered in reddish raised bumps mostly on the torso and arms. I didn't even notice until I went to get in the shower on a Saturday. It was Monday morning until I could get to my regular doc (not the comp doc), so it may have already started to go down. The previous Wednesday, I had a regular physical with blood draw and had a few hives(?) and was told to try zyrtec. It was after the 3rd dose I woke up covered. I'd never had that before, but had several different allergy OTC meds in the past without any problem.
You both have given me some definate useful info to pursue. Workmans comp would not support any testing for lyme because I am sure they would classify it as not work related. The doc I had to see only suggested lyme because he asks everybody, as I have heard from others who have seen him (in a non-comp visit) My w.c. has 2 approved facilities in the area, so I had to see whatever doc was available when I went to the office and requested help for my shoulder/back issue.
A safety meeting at work yielded some very interesting info today. It focused on keeping the body healthy as a safety measure. It focused on shoulders being strong, etc. I was unaware that a damaged shoulder could cause lower back issues, something fascia could be injured for overcompensating, paraphrasing here. I wonder if my hip, knee, etc being bothered could be due to my shoulder throwing all of me out of whack.
Of course I could have both an injury and a disease, I just feel I need to have enough information to convince myself that a test is necessay, which I'm about halfway there at this point. On to that list....
A safety meeting at work yielded some very interesting info today. It focused on keeping the body healthy as a safety measure. It focused on shoulders being strong, etc. I was unaware that a damaged shoulder could cause lower back issues, something fascia could be injured for overcompensating, paraphrasing here. I wonder if my hip, knee, etc being bothered could be due to my shoulder throwing all of me out of whack.
Of course I could have both an injury and a disease, I just feel I need to have enough information to convince myself that a test is necessay, which I'm about halfway there at this point. On to that list....
I just looked up methylprednisolone, and it's a steroid too. Prednisone is a brand name for it, and it's the commonly used name, since it's easier to say.
OTC allergy meds aren't steroids -- steroids can only be given by prescription, to my understanding.
Everyone has slightly different symptoms with Lyme and the various co-infections, because they are all different diseases/infections that interact differently with our own immune systems ... it's part of what confuses the docs so much: too many variables to deal with.
Did your doc see the red bumps? As Youvegot says, take pictures when something like that happens. Docs believe pictures but not patients, sadly enough.
(Stray thought: Is it possible you got measles or chicken pox? I was just reading the wiki on Methylprednisolone, and it says: "Individuals on methylprednisolone therapy should assiduously avoid exposure to measles and chicken pox as contracting these viral infections while on high dose corticosteroids can result in a potentially fatal viral course. Any accidental exposure to these viral infections by individuals uncertain of their immunity to chicken pox or measles should be reported immediately as prophylactic immunoglobulin therapy may be administered." Probably not, but just a thought.)
==================================
--->More to the point: I would definitely see an LLMD without delay, just so you can either rule it out, or deal with it. Lyme won't go away by itself.
You don't say what state you are in, and some areas have more LLMDs than others, so the first thing to do is find an LLMD you can get to. You have a wide array of symptoms, and it takes a wise doc to unravel all that.
Use your insurance! Many of us lost jobs when we got ill, and getting insurance after that happens and while you are sick can be difficult, to say the least. Don't wait -- just do it.
OTC allergy meds aren't steroids -- steroids can only be given by prescription, to my understanding.
Everyone has slightly different symptoms with Lyme and the various co-infections, because they are all different diseases/infections that interact differently with our own immune systems ... it's part of what confuses the docs so much: too many variables to deal with.
Did your doc see the red bumps? As Youvegot says, take pictures when something like that happens. Docs believe pictures but not patients, sadly enough.
(Stray thought: Is it possible you got measles or chicken pox? I was just reading the wiki on Methylprednisolone, and it says: "Individuals on methylprednisolone therapy should assiduously avoid exposure to measles and chicken pox as contracting these viral infections while on high dose corticosteroids can result in a potentially fatal viral course. Any accidental exposure to these viral infections by individuals uncertain of their immunity to chicken pox or measles should be reported immediately as prophylactic immunoglobulin therapy may be administered." Probably not, but just a thought.)
==================================
--->More to the point: I would definitely see an LLMD without delay, just so you can either rule it out, or deal with it. Lyme won't go away by itself.
You don't say what state you are in, and some areas have more LLMDs than others, so the first thing to do is find an LLMD you can get to. You have a wide array of symptoms, and it takes a wise doc to unravel all that.
Use your insurance! Many of us lost jobs when we got ill, and getting insurance after that happens and while you are sick can be difficult, to say the least. Don't wait -- just do it.
Sorry, I'm in Maine. I had chicken pox as a child and was afraid that I had it again or shingles, but my regular doc said it was neither, hives with an unknown origin. Next trip in, after I literally felt the spots rising while having a bit of a panic attack in a crowd at a wedding, it was scabies. 2 rounds of permythrin cream Then a smaller attack, I just waited it out, maybe 5 days or so.
The hard part is defining the connections, like you said there could be others. I am trying to arm myself with info.
The hard part is defining the connections, like you said there could be others. I am trying to arm myself with info.
I see there is a Facebok page for "MaineLyme" as one word. That might give you some leads to docs and support groups.
I googled
maine lyme
and got a bunch of hits. fwiw.
Your methodical approach of gathering data and then connecting the dots as best you can is a good one.
One of the bad things about Lyme is learning that docs have their heads in the sand about it and its co-infections (other infections carried by the same ticks).
I just now googled another search:
lyme hives
and wow! there's a lot of stuff there. Take a look, just don't get overwhelmed, and remember there's a lot of garbage out there on the net.
I googled
maine lyme
and got a bunch of hits. fwiw.
Your methodical approach of gathering data and then connecting the dots as best you can is a good one.
One of the bad things about Lyme is learning that docs have their heads in the sand about it and its co-infections (other infections carried by the same ticks).
I just now googled another search:
lyme hives
and wow! there's a lot of stuff there. Take a look, just don't get overwhelmed, and remember there's a lot of garbage out there on the net.
Just a srap of info on methylprednisone that could be useful.
When I took it, it took only 2 weeks to make me so ill I was effectively paralysed. I took months to recover from it.
meanwhile my mother who also has lyme feels fantastic whenever she has taken it. She feels worse lyme symptoms only after she stops taking it... no matter how long she is on it.
When I took it, it took only 2 weeks to make me so ill I was effectively paralysed. I took months to recover from it.
meanwhile my mother who also has lyme feels fantastic whenever she has taken it. She feels worse lyme symptoms only after she stops taking it... no matter how long she is on it.
Perhaps your mother has something else going on? Suppressing the immune system in the face of a bacterial infection .... hmmmmm.
I strongly encourage you to get tested. If you do have Lyme you want to start treating it as soon as possible. The worse it gets, the longer it takes to treat. It's hard to find a doctor to give long term treatment, and insurance won't always cover it. It can get costly. Time matters.
A test doesn't hurt anything. You don't have to wait until you're absolutely convinced you have Lyme to get tested. Docs run tests all the time for possibilities. Just be sure to ask for a Western Blot, even if the screening test is negative (it's false negative about 30% of the time). They don't usually run the Western Blot unless the screening test is positive.
A test doesn't hurt anything. You don't have to wait until you're absolutely convinced you have Lyme to get tested. Docs run tests all the time for possibilities. Just be sure to ask for a Western Blot, even if the screening test is negative (it's false negative about 30% of the time). They don't usually run the Western Blot unless the screening test is positive.
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
