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Lyme Disease or Autoimmune Disease? Another "mystery" illness!
I am a 30 year old woman, who was healthy until about a year and a half ago when everything went downhill fast! I'm looking for answers to my "mystery illness". This is a bit long so thank you if you're able to take the time to read it and offer a comment!
I was bitten by a tick while on a trip to Denmark in 2001. I didn't do a good job of removing it and I was never treated with antibiotics because my family doctor told me that if I hadn't had the bulls-eye rash, I did not have Lyme Disease. I was healthy for several years aside from occasional feeling that I was coming down with a flu (aching joints and muscles and swollen glands) that never developed into the real flu. I had 2 children and was pregnant with my 3rd in 2009 when I started to really get sick. It started with an acute "episode" of not being able to speak clearly or think clearly. My face began tingling on one side, then one of my arms, and both of my legs. My vision was blurry in one eye. I felt weak and extremely tired. This lasted about 3-4 hours and then I felt fine again. The only reason I didn't go to the hospital ER was because I thought it was turning into a migraine, which is something I'd had before. However, I never got a headache with this episode. I saw my doctor afterwards and she had an MRI of my brain, and EKG, and echocardiogram done to rule out a TIA (or mini stroke). They were all normal.
I started getting heart palpitations sometimes and also episodes of dizziness. I had a patch of tingling on my back that would come and go. I was getting some one-sided headaches that would come with tingling in my cheekbone and blurriness in that eye. (My doctor said these were migraines and gave me Sumatriptan, which worked.) Overall I felt pretty good though. Then a few months after my daughter was born, I had another big episode with tingling, chills, weakness, blurry vision, and so on. My husband took me to the ER and we were referred to a neurologist with the suspicion it was Multiple Sclerosis. That was almost a year ago and I have not felt normal since. My symptoms change from hour to hour and day to day and include swollen glands, heart palpitations, dizziness, heartburn and gastrointestinal symptoms, circulatory problems, pressure in my head/sinuses/cheekbone on one side, aching joints (esp. fingers) and stiffness, muscle pain and twitching, tingling and other weird sensations in my legs (usually both at the same time), hands, a patch on my back, my scalp, the left side of my face, and my tongue and lips. I also get a very strong sensation in my skin that feels as if it's tightening or stiffening, though the actual skin feels and looks normal. I get this sensation on my forehead and cheeks, and also my arms and lower legs.
I've had brain and spine MRI's, an EEG, chest CT, echocardiogram, and NCV/EMG tests which were all normal. My B12 and thyroid levels are normal. The neurologist said that I have polyneuropathy because I have reduced awareness of vibration and temperature in my legs. He also confirmed that I was getting migraines, but told me to stop taking the Sumatriptan because it constricts blood vessels and I have developed some circulatory problems where my vessels spasm and my hands and feet get very cold and turn blue. I ended up seeing a vascular specialist about this and was put on a blood pressure drug to dilate the vessels (even though my BP is on the low side).
I had some abnormalities in my blood work, including low iron, mildly high blood sugar (not quite diabetic), a high positive ANA (which indicates autoimmune disease, but also can be caused by cancer or chronic infection), and a positive rheumatoid factor (which sometimes occurs in rheumatoid arthritis but also in other autoimmune diseases). My ELISA/Western Blot Lyme test was negative. I have since tested negative for rheumatoid factor on subsequent blood tests, but my ANA remains positive. I've been on an iron supplement for 6 months and it's coming up slowly. I also always (for years) have had a high white blood cell count.
I'm being seen by a rheumatologist because of my positive ANA test. It often indicates a disease like lupus, rheumatoid arthritis, myositis, or scleroderma. I was tested for all the antibodies associated with those diseases and I do not have them. The rheumatologist said I'm not a typical presentation of any particular disease. Mostly she is confused by my neurological symptoms and is referring me back to a neurologist. My family doctor was sure that I had MS initially, but I had no lesions on the MRI.
So my questions are: does this sound familiar to any of you? I have some symptoms that I don't think usually occur in Lyme like my heartburn (which is quite severe and came on suddenly with my other symptoms) and circulatory issues. Do those fit in with Lyme? Has anyone with Lyme had a positive ANA test? Do any of you get the tightening skin sensations?
I think all of my symptoms are connected rather than being caused by several different health problems, but the doctors I've seen only want to consider their own specialty and not put it into context. I am very frustrated and want to know if Lyme is a possibility. My neurologist was willing to consider it, but when the test came back negative it was off the table. I know about IGENEX and will consider ordering a test. However, since I was bitten in Denmark and the tick-borne pathogens there are different than here in North America, I worry that it will also not be reliable.
Many thanks for any suggestions or comments!
Zoe
I was bitten by a tick while on a trip to Denmark in 2001. I didn't do a good job of removing it and I was never treated with antibiotics because my family doctor told me that if I hadn't had the bulls-eye rash, I did not have Lyme Disease. I was healthy for several years aside from occasional feeling that I was coming down with a flu (aching joints and muscles and swollen glands) that never developed into the real flu. I had 2 children and was pregnant with my 3rd in 2009 when I started to really get sick. It started with an acute "episode" of not being able to speak clearly or think clearly. My face began tingling on one side, then one of my arms, and both of my legs. My vision was blurry in one eye. I felt weak and extremely tired. This lasted about 3-4 hours and then I felt fine again. The only reason I didn't go to the hospital ER was because I thought it was turning into a migraine, which is something I'd had before. However, I never got a headache with this episode. I saw my doctor afterwards and she had an MRI of my brain, and EKG, and echocardiogram done to rule out a TIA (or mini stroke). They were all normal.
I started getting heart palpitations sometimes and also episodes of dizziness. I had a patch of tingling on my back that would come and go. I was getting some one-sided headaches that would come with tingling in my cheekbone and blurriness in that eye. (My doctor said these were migraines and gave me Sumatriptan, which worked.) Overall I felt pretty good though. Then a few months after my daughter was born, I had another big episode with tingling, chills, weakness, blurry vision, and so on. My husband took me to the ER and we were referred to a neurologist with the suspicion it was Multiple Sclerosis. That was almost a year ago and I have not felt normal since. My symptoms change from hour to hour and day to day and include swollen glands, heart palpitations, dizziness, heartburn and gastrointestinal symptoms, circulatory problems, pressure in my head/sinuses/cheekbone on one side, aching joints (esp. fingers) and stiffness, muscle pain and twitching, tingling and other weird sensations in my legs (usually both at the same time), hands, a patch on my back, my scalp, the left side of my face, and my tongue and lips. I also get a very strong sensation in my skin that feels as if it's tightening or stiffening, though the actual skin feels and looks normal. I get this sensation on my forehead and cheeks, and also my arms and lower legs.
I've had brain and spine MRI's, an EEG, chest CT, echocardiogram, and NCV/EMG tests which were all normal. My B12 and thyroid levels are normal. The neurologist said that I have polyneuropathy because I have reduced awareness of vibration and temperature in my legs. He also confirmed that I was getting migraines, but told me to stop taking the Sumatriptan because it constricts blood vessels and I have developed some circulatory problems where my vessels spasm and my hands and feet get very cold and turn blue. I ended up seeing a vascular specialist about this and was put on a blood pressure drug to dilate the vessels (even though my BP is on the low side).
I had some abnormalities in my blood work, including low iron, mildly high blood sugar (not quite diabetic), a high positive ANA (which indicates autoimmune disease, but also can be caused by cancer or chronic infection), and a positive rheumatoid factor (which sometimes occurs in rheumatoid arthritis but also in other autoimmune diseases). My ELISA/Western Blot Lyme test was negative. I have since tested negative for rheumatoid factor on subsequent blood tests, but my ANA remains positive. I've been on an iron supplement for 6 months and it's coming up slowly. I also always (for years) have had a high white blood cell count.
I'm being seen by a rheumatologist because of my positive ANA test. It often indicates a disease like lupus, rheumatoid arthritis, myositis, or scleroderma. I was tested for all the antibodies associated with those diseases and I do not have them. The rheumatologist said I'm not a typical presentation of any particular disease. Mostly she is confused by my neurological symptoms and is referring me back to a neurologist. My family doctor was sure that I had MS initially, but I had no lesions on the MRI.
So my questions are: does this sound familiar to any of you? I have some symptoms that I don't think usually occur in Lyme like my heartburn (which is quite severe and came on suddenly with my other symptoms) and circulatory issues. Do those fit in with Lyme? Has anyone with Lyme had a positive ANA test? Do any of you get the tightening skin sensations?
I think all of my symptoms are connected rather than being caused by several different health problems, but the doctors I've seen only want to consider their own specialty and not put it into context. I am very frustrated and want to know if Lyme is a possibility. My neurologist was willing to consider it, but when the test came back negative it was off the table. I know about IGENEX and will consider ordering a test. However, since I was bitten in Denmark and the tick-borne pathogens there are different than here in North America, I worry that it will also not be reliable.
Many thanks for any suggestions or comments!
Zoe
Agreed.
I was looking at the CDC for basic information defining Lyme carditis, and in the bottom right margin of the page is a microscope picture of 3 Lyme spirochetes embedded in heart tissue. Tell me I want to adjust my immune system so it no longer fights that bacteria? Let it multiply? Not on my watch!
I was looking at the CDC for basic information defining Lyme carditis, and in the bottom right margin of the page is a microscope picture of 3 Lyme spirochetes embedded in heart tissue. Tell me I want to adjust my immune system so it no longer fights that bacteria? Let it multiply? Not on my watch!
A different point of view:
Posted above is this: "there's a new treatment that many are having success with called LDI (Low-dose immunotherapy). Many LLNDs (Lyme-literate NDs) are starting to use this treatment on their patients. It treats chronic Lyme disease as an autoimmune issue, in other words many of us with the chronic phase have an 'inappropriate' immune response."
I personally would NOT use this approach -- to my understanding, 'LDI' does NOT kill the Lyme bacteria and wipe out the infection. Instead, it appears to reduce the symptoms to seem less annoying to the patient.
Folks, that is NOT a cure.
Lyme is curable, but it requires appropriate testing and diagnosis and THEN the right doses of antibiotics for the right period of time. To 'suppress' the symptoms leaves you infected, and Lyme is in the same disease family as syphilis.
Read up on untreated syphilis and you will understand how serious this is ... and by 'untreated', that includes meds that suppress your immune system so you 'feel better' for a while. ... but that is NOT a cure.
Posted above is this: "there's a new treatment that many are having success with called LDI (Low-dose immunotherapy). Many LLNDs (Lyme-literate NDs) are starting to use this treatment on their patients. It treats chronic Lyme disease as an autoimmune issue, in other words many of us with the chronic phase have an 'inappropriate' immune response."
I personally would NOT use this approach -- to my understanding, 'LDI' does NOT kill the Lyme bacteria and wipe out the infection. Instead, it appears to reduce the symptoms to seem less annoying to the patient.
Folks, that is NOT a cure.
Lyme is curable, but it requires appropriate testing and diagnosis and THEN the right doses of antibiotics for the right period of time. To 'suppress' the symptoms leaves you infected, and Lyme is in the same disease family as syphilis.
Read up on untreated syphilis and you will understand how serious this is ... and by 'untreated', that includes meds that suppress your immune system so you 'feel better' for a while. ... but that is NOT a cure.
I'd be VERY surprised if you didn't have Lyme disease!! You described my symptoms perfectly in your post. Sounds like you've had it for a long time because the neurological conditions you describe don't become so severe without many years of breeding time (typically). I was essentially paralyzed from the waste down for 3 weeks because the Lyme bacteria intercepted messages my brain sent to my legs and refused to let the message through so that I could walk. Currently, I can't use my right arm because of such horrendous 'inflammation' that came out of NOWHERE. It is the Lyme causing the pain and inflammation in my shoulder. I have been MRI'd head to toe...had every blood test and have had EMG's in both legs and my entire right arm and shoulder and the blood tests are the only thing that have had MARGINALLY abnormal results...everything indicates I'm 'perfectly healthy!' I'm 32 and can't work or live on my own at the moment but the antibiotics I'm on have helped my cognitive deficits incredibly. You KNOW your body, don't let anyone tell you that you're crazy for experiencing what you're going through. My Lyme disease emerged from remission when I fell on icy stairs and hurt my back...maybe having children traumatized your body in a similar way? Could be! Good luck.
Hi Zoe, I too live in ON and went through many of the same symptoms that you did. There are many advances with Lyme disease treatment happening - do not rule out a good Lyme-literate naturopath. I saw a LLMD in Plattsburgh and paid big bucks. For several reasons, including my background in nursing I chose NOT to go the long term antibiotic route. I know too many who continue to relapse on abx. and it's an on-going battle with no cure in site. At this present time, there's a new treatment that many are having success with called LDI (Low-dose immunotherapy). Many LLNDs (Lyme-literate NDs) are starting to use this treatment on their patients. It treats chronic Lyme disease as an autoimmune issue, in other words many of us with the chronic phase have an "inappropriate" immune response. For further info/great explanation on the treatment there's a group on Facebook called LDI For Lyme that has a lot of good info in the Files section of the group along with video interviews with Dr. Ty Vincent who pioneered this treatment and is having great success with it. You can search for a ND in your area (I believe there's one in St. Catherines who's starting to treat with LDI). Also, another good (Canadian too) resource is Canlyme.com
All the best to you in this Lyme maze!
All the best to you in this Lyme maze!
Thank you for your post. The message you responded to is now four years old, and whether the person you commented to is still viewing this site is unclear. You could try to send a 'private message' to Zoe by hovering your cursor over her name above ('Zoe5710') where it is a hot link in the 'To' line, and click through to send your message directly to her.
--->>> To preserve confidentiality of MDs who may treat Lyme in a way not appreciated by other in the medical community, please in future do NOT include ANY MD's name. In some states, the local and state medical boards may try to have such an MD's medical license revoked as being not in agreement with the [outdated] Lyme diagnostic and treatment approaches used by MDs who do not believe Lyme disease to be a serious, under-treated, and under-diagnosed illness.
Thank you for your understanding.
--->>> To preserve confidentiality of MDs who may treat Lyme in a way not appreciated by other in the medical community, please in future do NOT include ANY MD's name. In some states, the local and state medical boards may try to have such an MD's medical license revoked as being not in agreement with the [outdated] Lyme diagnostic and treatment approaches used by MDs who do not believe Lyme disease to be a serious, under-treated, and under-diagnosed illness.
Thank you for your understanding.
Hello Zoe, i found the one in a million Dr and is name is Alain Mass he is out in Monsey Ny he is worth the trip and saved my life litteraly. I have the later stage of the lyme and was treated for MS for years witch was slowly killing me with toxins and un nessesary drugs. This Dr gave me relive after 6 years of never ending pains and cognative difficulties my grandma dnt even have. This Dr is upfront and so warm. He will give you hope and a sence of relife that thier will be an end to the suffereing we feel. He belives that a body has its foundation and to treat a person it starts from thier. He gave me a perfect example a persons body is like a building you have crack in it so you patch it up, somthing happenes like a huricain and really damages the building you have to do a major reconstructin. But it starts from the foundation. Again he saved my life iam 29 years old and i am going to live. you will too
I would find out what pattern was identified with your ANA. Your symptoms sound very similar to mine and I was given possible MS, Lupus, Mixed connective tissue disease, etc .I was finally diagnosed with Scleroderma after several years and other symptoms began to emerge.
Thanks,
Beverly
Thanks,
Beverly
Carrie - Interesting you mentioning the gallbladder. I was recently told that many people with Lyme end up having their gallbladder removed and feel better when they do. I am currently undergoing testing to determine how my gallbladder is functioning. I was told having your gallbladder removed is a simple outpatient procedure.
Zoe - I agree with Jackie about finding a LLMD. I would suspect Lyme because you were healthy then your symptoms came on rather suddenly. That's how it happened to me. Also with your headaches, have you considered having a SPECT Scan? A SPECT Scan can show abnormalities that can suggest Lyme. Just my two cents.
Zoe - I agree with Jackie about finding a LLMD. I would suspect Lyme because you were healthy then your symptoms came on rather suddenly. That's how it happened to me. Also with your headaches, have you considered having a SPECT Scan? A SPECT Scan can show abnormalities that can suggest Lyme. Just my two cents.
dear zoe,
i can't add much to what jackie & carrie have said in their respective replies to your original post, but, i just wanted to say that so many of the symptoms you described resonate with me. i have experienced a lot of the same sensations you have. i just received positive lyme results in august, along with a rickettsia co-infection, after 2.5 years of seeking answers, and am just embarking on a treatment plan.
please keep us posted as to how you make out.
best wishes,
binx
i can't add much to what jackie & carrie have said in their respective replies to your original post, but, i just wanted to say that so many of the symptoms you described resonate with me. i have experienced a lot of the same sensations you have. i just received positive lyme results in august, along with a rickettsia co-infection, after 2.5 years of seeking answers, and am just embarking on a treatment plan.
please keep us posted as to how you make out.
best wishes,
binx
We do have some Canadian posters here -- in the search box at the top of this screen, I just entered --- Canada Lyme --- and it pulled up a bunch of messages and posts from your fellow Canadians. They might be able to give you some ideas. I seem to recall some quite recent posts from Canada.
Also, if you search just --- Canada Lyme --- in google etc., it will likely pop up quite a few items. Canlyme is a website that I think has or used to have a search function to find an LLMD.
Many Lyme-related websites are run by people like us, who have encountered Lyme and getting back our own against the bacteria.
While the official standard for treating Lyme under the Canadian health care authority is much like the unfriendly approach taken by mainstream (nonLLMD) docs in the US, there are docs I think who are more flexible ... but verrrrry quietly so.
And, the option of coming to the US is good since you're so close.
Also, if you search just --- Canada Lyme --- in google etc., it will likely pop up quite a few items. Canlyme is a website that I think has or used to have a search function to find an LLMD.
Many Lyme-related websites are run by people like us, who have encountered Lyme and getting back our own against the bacteria.
While the official standard for treating Lyme under the Canadian health care authority is much like the unfriendly approach taken by mainstream (nonLLMD) docs in the US, there are docs I think who are more flexible ... but verrrrry quietly so.
And, the option of coming to the US is good since you're so close.
Thanks Carrie!
I'm sorry to hear that others are going through similar struggles, yet it's nice to know that I'm not alone. I haven't directly been told that it's "all in my head", but I think that when doctors run a few tests and nothing turns up, they basically write you off as depressed or a hypochondriac. If it's a complex diagnosis, I just feel like doctors aren't interested in you as a patient. It's also hard when your symptoms change from day to day and move around your body -- I think it's that more than anything else that makes doctors think it's not a "real" disease.
Thanks for the tip on the gallbladder. I should ask my doctor about that. Actually, my grandmothers and an aunt had theirs removed so maybe it's a possibility for me too.
I'll let you guys know if/when I get any answers.
Zoe
I'm sorry to hear that others are going through similar struggles, yet it's nice to know that I'm not alone. I haven't directly been told that it's "all in my head", but I think that when doctors run a few tests and nothing turns up, they basically write you off as depressed or a hypochondriac. If it's a complex diagnosis, I just feel like doctors aren't interested in you as a patient. It's also hard when your symptoms change from day to day and move around your body -- I think it's that more than anything else that makes doctors think it's not a "real" disease.
Thanks for the tip on the gallbladder. I should ask my doctor about that. Actually, my grandmothers and an aunt had theirs removed so maybe it's a possibility for me too.
I'll let you guys know if/when I get any answers.
Zoe
Thank you for your thorough and helpful reply! I find the whole culture around Lyme Disease so strange. It boggles my mind that an infectious disease could cause this type of controversy, and it angers me that patients aren't able to get accurate testing or good treatment.
I will consider getting my baby tested if I test positive. Actually, all 3 of my children were born after my tick bite so I suppose I'd get all of them tested. But I will cross that bridge when I come to it.
Thanks again for your comments.
I live in Canada (Toronto, Ontario) and I know LLMD's are few and far between in this country. I would prefer to find a Canadian doctor, as we have universal (i.e. free) health care here. However, if necessary, I would travel to New York, Michigan, or anywhere in the northeastern US just to be able to get a knowledgeable doctor.
Zoe
I will consider getting my baby tested if I test positive. Actually, all 3 of my children were born after my tick bite so I suppose I'd get all of them tested. But I will cross that bridge when I come to it.
Thanks again for your comments.
I live in Canada (Toronto, Ontario) and I know LLMD's are few and far between in this country. I would prefer to find a Canadian doctor, as we have universal (i.e. free) health care here. However, if necessary, I would travel to New York, Michigan, or anywhere in the northeastern US just to be able to get a knowledgeable doctor.
Zoe
Hi Zoe:
Oh man...I certainly feel your pain...I'm sure all of us here can relate.
I have had many of your symptoms....they come and go and are at different random places all the time. I had the skin tightening feeling in my left leg....it was like my quad muscle would harden up on left leg, hold for a few minutes and then release. It would do this over and over again for a few hours and when it was all done, my leg was aching. I hated that. I also had tingling and twitching ALL over my body. The one the got me the most and that I actually have had again this last week is a tingling sensation under my left eye. Before it also included numbness on the top of my cheek. Very very disturbing.
Also, regarding your heartburn....I also had a sudden onset of heartburn and no medicine would touch it. This went on for five months before they tested my gallbladder. It turns out that I had gallstones. My LLMD believes that the lyme caused my gallbladder to malfunction because there is no history of gallbladder disease in my family nor do I fit the stereotype of a gallbladder disease person. I also NEVER had any pain or attacks. I had all kinds of gastro problems though. Finally about a year later, I had my gallbladder removed which solved all my gastrointestinal issues (including the heartburn...thank god!!! - man...that was awful) HOWEVER, it brought on all my lyme symptoms.
I know for a fact I was bitten by a tick when I was younger however, no rash that I know of. I've been camping every year, so who knows when I acquried lyme. When my symptoms started shortly after my GB surgery (my LLMD says that the trauma and stress of the surgery made my immune system no longer able to keep the disease under control which is why my symptoms started right after my surgery), I was seen by numerous doctors who told me basically that it was all in my head. Anyway, I finally got tested at Igenex, got a positive test with a co-infection. Started treatment right away and starting improving rather quickly.
Right now, I had a change of meds about three weeks ago which is causing me to herx pretty badly. This is a term, if you are not already familiar with it, that you will come to know if you find out you have lyme.
I would definitely find an LLMD and order your bloodwork through Igenex. I'm not a doctor, but it sure sounds like it is highly possible that this may be your problem.
Oh, I had an ANA test and mine was negative....
Good luck and please keep us updated Zoe.
Carrie
Oh man...I certainly feel your pain...I'm sure all of us here can relate.
I have had many of your symptoms....they come and go and are at different random places all the time. I had the skin tightening feeling in my left leg....it was like my quad muscle would harden up on left leg, hold for a few minutes and then release. It would do this over and over again for a few hours and when it was all done, my leg was aching. I hated that. I also had tingling and twitching ALL over my body. The one the got me the most and that I actually have had again this last week is a tingling sensation under my left eye. Before it also included numbness on the top of my cheek. Very very disturbing.
Also, regarding your heartburn....I also had a sudden onset of heartburn and no medicine would touch it. This went on for five months before they tested my gallbladder. It turns out that I had gallstones. My LLMD believes that the lyme caused my gallbladder to malfunction because there is no history of gallbladder disease in my family nor do I fit the stereotype of a gallbladder disease person. I also NEVER had any pain or attacks. I had all kinds of gastro problems though. Finally about a year later, I had my gallbladder removed which solved all my gastrointestinal issues (including the heartburn...thank god!!! - man...that was awful) HOWEVER, it brought on all my lyme symptoms.
I know for a fact I was bitten by a tick when I was younger however, no rash that I know of. I've been camping every year, so who knows when I acquried lyme. When my symptoms started shortly after my GB surgery (my LLMD says that the trauma and stress of the surgery made my immune system no longer able to keep the disease under control which is why my symptoms started right after my surgery), I was seen by numerous doctors who told me basically that it was all in my head. Anyway, I finally got tested at Igenex, got a positive test with a co-infection. Started treatment right away and starting improving rather quickly.
Right now, I had a change of meds about three weeks ago which is causing me to herx pretty badly. This is a term, if you are not already familiar with it, that you will come to know if you find out you have lyme.
I would definitely find an LLMD and order your bloodwork through Igenex. I'm not a doctor, but it sure sounds like it is highly possible that this may be your problem.
Oh, I had an ANA test and mine was negative....
Good luck and please keep us updated Zoe.
Carrie
and PPS: you say: "I didn't do a good job of removing it and I was never treated with antibiotics because my family doctor told me that if I hadn't had the bulls-eye rash, I did not have Lyme Disease."
1 -- not your fault that ticks are hard to remove, and sometimes by the time you find it, you're already infected. Spilt milk.
2 -- your doc, imho, is wrong. I never had a rash either and I was quite ill. But the doc's approach is unfortunately mainstream medicine.
1 -- not your fault that ticks are hard to remove, and sometimes by the time you find it, you're already infected. Spilt milk.
2 -- your doc, imho, is wrong. I never had a rash either and I was quite ill. But the doc's approach is unfortunately mainstream medicine.
and PS think about getting your baby tested, too, when you find an LLMD. Sometimes the bacteria cross the placenta, sometimes not, but treatment should be considered, imho, if the baby is infected. BUT DONT WORRY ABOUT IT. It is what it is at this point, and you'll deal with it. Just get yourself to a doc and go from there, ok?
Welcome -- sorry to hear what you've been through, but it's very similar to what many of us here have also gone through. You are exactly right when you ays "the doctors I've seen only want to consider their own specialty and not put it into context." You have it exactly right.
Worse, the two specialties that first began to study Lyme a few decades ago were neuros and infectious disease (ID) docs, who latched onto their initial impressions of the infection and have refused to update their understanding despite significant developments in the field. Those early docs are elderly now, but still practicing and still high up in the Infectious Disease Society of America (IDSA) which all docs look to for setting the standards for diagnosis and treatment of infectious diseases, including Lyme.
Sadly, it's been more like the blind men and the elephant: they believe the elephant to be wholly configured like the part they are touching, and refuse to open their minds. It's a scandal, in my opinion, but there are other docs who understand that Mother Nature is not so easy to categorize and that she never ever holds still.
Thus has sprung up a separate group called ILADS, for International Lyme and Associated Disease Society. (Website at ILADS [dot] org.) The ILADS docs are looked down on by the IDSA docs as a bunch of charlatans. And the patients are caught in the middle.
In some states, local and state medical boards are revoking the medical licenses of docs who go the ILADS way, and generally docs don't like to be known as Lyme specialists -- they can be any kind of doc (GP, internist, etc.) but they have open minds about Lyme. For shorthand, we patients call them LLMDs, for Lyme-Literate MDs. Docs cringe at the phrase, but we out here in the wilderness need that to differentiate among docs when we talk among ourselves.
So. You need to find an LLMD, in my untrained, nonmedical opinion.
Although some people recommend ordering your own IGeneX tests, I don't think that's the best route. Lyme is tricky to diagnose, and about half the time the tick that gave you Lyme also gave you other diseases that need different testing and treatment. Let the doc decide, after taking your history and doing an exam, what tests to order based on your symptoms.
The LLMD can also advise on whether Danish Lyme will be picked up by IGeneX tests. Realize however that ALL the tests are poor, but the IGeneX is the best. The W.blot and ELISA tests, the standard ones, are very inaccurate esp. if you have been infected a while. Why? Because those tests look for antibodies your immune system make against the Lyme bacteria, and after a while, your immune system gives up and goes back to sleep, figuring the bacteria must all be dead, so the tests come up negative even though you are still infected. The IGeneX test looks for direct evidence of the Lyme bacteria DNA, so it's better, but also not foolproof. Sometimes a doc will give you a short course of antibiotics to stir up the immune reaction and then retest with W.blot/ELISA. That's the kind of stuff an LLMD knows about that other docs don't do or value.
Also one problem with Lyme is that the bug reproduces very slowly, and it is while reproducing that it is most susceptible to antibiotics, so it takes much much longer treatment to kill them than 'regular' infections, also something nonLLMDs don't get or believe. It's also true of other diseases like leprosy and TB, so it happens.
Good for you for figuring out what to try next, since your docs aren't on the job, it seems. Let us know what area you live in and we'll suggest some ways to find an LLMD nearby.
Keep up the good fight!
Worse, the two specialties that first began to study Lyme a few decades ago were neuros and infectious disease (ID) docs, who latched onto their initial impressions of the infection and have refused to update their understanding despite significant developments in the field. Those early docs are elderly now, but still practicing and still high up in the Infectious Disease Society of America (IDSA) which all docs look to for setting the standards for diagnosis and treatment of infectious diseases, including Lyme.
Sadly, it's been more like the blind men and the elephant: they believe the elephant to be wholly configured like the part they are touching, and refuse to open their minds. It's a scandal, in my opinion, but there are other docs who understand that Mother Nature is not so easy to categorize and that she never ever holds still.
Thus has sprung up a separate group called ILADS, for International Lyme and Associated Disease Society. (Website at ILADS [dot] org.) The ILADS docs are looked down on by the IDSA docs as a bunch of charlatans. And the patients are caught in the middle.
In some states, local and state medical boards are revoking the medical licenses of docs who go the ILADS way, and generally docs don't like to be known as Lyme specialists -- they can be any kind of doc (GP, internist, etc.) but they have open minds about Lyme. For shorthand, we patients call them LLMDs, for Lyme-Literate MDs. Docs cringe at the phrase, but we out here in the wilderness need that to differentiate among docs when we talk among ourselves.
So. You need to find an LLMD, in my untrained, nonmedical opinion.
Although some people recommend ordering your own IGeneX tests, I don't think that's the best route. Lyme is tricky to diagnose, and about half the time the tick that gave you Lyme also gave you other diseases that need different testing and treatment. Let the doc decide, after taking your history and doing an exam, what tests to order based on your symptoms.
The LLMD can also advise on whether Danish Lyme will be picked up by IGeneX tests. Realize however that ALL the tests are poor, but the IGeneX is the best. The W.blot and ELISA tests, the standard ones, are very inaccurate esp. if you have been infected a while. Why? Because those tests look for antibodies your immune system make against the Lyme bacteria, and after a while, your immune system gives up and goes back to sleep, figuring the bacteria must all be dead, so the tests come up negative even though you are still infected. The IGeneX test looks for direct evidence of the Lyme bacteria DNA, so it's better, but also not foolproof. Sometimes a doc will give you a short course of antibiotics to stir up the immune reaction and then retest with W.blot/ELISA. That's the kind of stuff an LLMD knows about that other docs don't do or value.
Also one problem with Lyme is that the bug reproduces very slowly, and it is while reproducing that it is most susceptible to antibiotics, so it takes much much longer treatment to kill them than 'regular' infections, also something nonLLMDs don't get or believe. It's also true of other diseases like leprosy and TB, so it happens.
Good for you for figuring out what to try next, since your docs aren't on the job, it seems. Let us know what area you live in and we'll suggest some ways to find an LLMD nearby.
Keep up the good fight!
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