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Newbie!! Please Help! Is this Lyme????
Hi all!! I am brand new to this forum .....I am currently in the middle of being diagnosed. I am hoping you can answer some of my questions?? First I will gice you some history; I am 36 yrs old mother of an 8 yr old. Starting 3 years ago on one fateful day when I was in my yard playing with my son I started suffering from lightbulb fatigue and dizzy spells, flu like symptoms for a couple of weeks and then it would go away only to keep coming back every couple of weeks and lasting longer. Before this point in time I was very healthy. It was very much an out of the blue onset of symptoms. In 2008 I had a partial hysterectomy and that is really when my health went downhill. Since then I have suffered from chronic lightheadedness, severe head pressure and pain in the back of my head, chronic fits of freezing so bad I have to bathe 3 times a day to get core up, night sweats, raynauds, bouts of severe racing heart mainly at night to start but now during day also, bouts of irregular heart beat where it feels like my heart is going to stop..there is a change in rate from any position, severe balance problems, weakness in legs, chest pressure so bad i feel like i am being smothered, etc, etc.the list goes on... I have seen a neuro, pulmonologist, had many tests including echos, pfts, and they are arriving at the fact that this could be autonomic dysfunction....I have been referred to a specialist but cannot see one until may....I would appreciate any input you can give and advice. Also, I have several questions have any patients felt there symptoms are better on birth control? After the hyster my hormones I believe came unbalanced and I wonder if that is why the symptoms became more chronic. I live in Ontario Canada where Lyme isnt epidemic but I live on a 200 ft lot with tons of trees and natural brush and gardening is a huge hobby so I was outside alot the summer I started getting ill.
Thanks
Bren
Thanks
Bren
Good to hear from you! I got yeast problems (systemic) from the long term abx, but seem to have it whipped or at least very suppressed at this point. (I suspect genetic susceptibility to yeast in my family, but who knows.)
Let me know if you'd like a PM with my list of daily supplements and the dietary restrictions I was on for a while.
Take care --
Let me know if you'd like a PM with my list of daily supplements and the dietary restrictions I was on for a while.
Take care --
Fellow Ontario Lymie
Lyme is just as much an epidemic for Ontario as it is for the northern states. I have always believed that a lot of those other infectious/auto-immune diseases are lyme bacteria
I'm a fellow Ontarionian with lyme. The symptoms my lyme exhibits are exactly chronic fatigue syndrome symptoms along with sinusitis.
I've managed to live with it, because there isn’t much else I can do. My Antibiotic treatments/protocols wreaked havoc on my digestive system, and i cant continue with treatments. I have learned that the only way my body can manage and minimize symptoms is a healthy lifestyle (clean eating, exercising, vitamin intake, etc.) It *****.. but what else can one do!
I hope you get it sorted out.. if you would like a name of a great LLMD send me a message
Lyme is just as much an epidemic for Ontario as it is for the northern states. I have always believed that a lot of those other infectious/auto-immune diseases are lyme bacteria
I'm a fellow Ontarionian with lyme. The symptoms my lyme exhibits are exactly chronic fatigue syndrome symptoms along with sinusitis.
I've managed to live with it, because there isn’t much else I can do. My Antibiotic treatments/protocols wreaked havoc on my digestive system, and i cant continue with treatments. I have learned that the only way my body can manage and minimize symptoms is a healthy lifestyle (clean eating, exercising, vitamin intake, etc.) It *****.. but what else can one do!
I hope you get it sorted out.. if you would like a name of a great LLMD send me a message
You are right there is a lot of info on lyme on the net and a lot of doctors ,and most of all the va health care system , they think they know it all. When my western blot test, done on the outside of va came back positive the va didn't accept it i had to call my congressmen to get involved and they ran two test of thier own which came up positive, but they still said i didnt have it , you see i dont trust them. they claimed they don't know anything about lyme, because they never had a case like this here in california ,although i got sick in indiana,so i did my best to teach them about lyme disease because they say we don't have it here in california, which is a lie ,its everywhere,instead they tell u that u have fybromialgia,or some other disease.Now that they have a neg pcr test they have stopped helping me, so do ur own research and find a doctor that will listen to u about where u have been and how u got sick . and i some what remember pulling a tick off of me and had a bruse onder my right arm pit which now for three years have had a lump there and they do test and still say they dont know what it is and its very painful.
Please do not be alarmed by some of the statements you see above that "there is no medical education out there for anyone" and "you cannot go to school to learn how to treat Lyme."
I stand by what I posted above, and I've been dealing with Lyme and some coinfections for several years now. There is a split in the medical community over diagnosis and treatment, and my personal goal in posting on this website is to pass along to other what I have learned in getting diagnosed and being treated for Lyme and coinfections.
I stand by what I posted above, and I've been dealing with Lyme and some coinfections for several years now. There is a split in the medical community over diagnosis and treatment, and my personal goal in posting on this website is to pass along to other what I have learned in getting diagnosed and being treated for Lyme and coinfections.
You can not go to school to learn how to treat Lyme. There is "medical education" all over the internet.
There is 'medical education' (medical knowledge) on how to treat Lyme. There is a split in the medical community on the best ways to diagnose and treat.
There is no medical education out there for anyone, including doctors on how to treat lyme. So, anybody with common sense can rule out right from wrong through trial and error. Remember: If its not working you need to move on.
Hi, sorry to hear you have been through such a bad time.
Good for you that you keep pursuing a diagnosis. The medical professionals mean well, but they don't know everything, and Lyme and other tickborne diseases are on the cutting edge of medicine -- and worse, there is a dispute in the medical community about diagnosis and treatment. Many of us have been there.
Everyone's symptoms are a bit different, and Lyme affects many different body systems, including endocrine (body temp, hormones, cardiac, etc.) and cardiac function and muscles generally (Lyme bacteria use magnesium in their reproductive process, but blood tests don't show low magnesium until it is dangerously low -- that happened to me and the docs never figured it out).
Your note that Lyme is not epidemic in Ontario is the conventional wisdom, but it is a point that Lyme specialists dispute strongly. We hear the same thing here in the US, and I had a doc look at me and say "Well, we won't test for Lyme ... you don't look very 'outdoorsy'." That was the first time I had Lyme and a coinfection. Never saw that first tick, but then I got bitten again, not by a tiny Lyme-type tick, but by a big fat dog tick picked up in an urban park ... I took the tick to the doc and had it tested, and yes, it had Lyme and a coinfection different from my first infection.
Current medical standards are that Lyme is hard to get and easy to cure, but we the public are finding that not to be accurate. It takes time for medicine to progress, and we are caught in that time warp right now. Fortunately there are some openminded docs who are looking out for us, but it takes some effort to find them sometimes, because in some jurisdictions, their medical licenses are at risk for treating more aggressively and longer than the current so-called standards. That is why you don't see MDs names printed in the open here.
Canada has a problem with the national health regime, because when the national health says X is the treatment for Y disease, then that's the end of the discussion. And the docs who do not understand the menace that Lyme is are the ones who control the standards of diagnosis and treatment. In the US, in many states, there is 'freedom of conscience', under which MDs are permitted to practice according to their view of what is appropriate.
I would suggest that you educate yourself as much as you can, but searching "canada lyme" to find patient groups who can help you find diagnosis and treatment by what we Lyme patients casually call "LLMDs", which is slang for Lyme-Literate MDs, meaning those who understand that Lyme does not equal the sniffles. There is or was a group called canlyme that might help you, but do some searches and you'll be surprised what you find.
Some docs will tell you that if you didn't see a tick or get a round 'bullseye' rash that you cannot have Lyme, or 'we don't have Lyme here' -- and then they have no idea what is wrong and send you around in circles.
Also I suggest you go to ILADS [dot] org, under the third tab called 'About Lyme' and down to Burrascano's 'Diagnostic Hints ...'. Dr Burrascanno was and is a leader in Lyme diagnosis and treatment, fighting the medical establishment for years in Connecticut. The posts on that website are meant for medical professionals, but are also accessible to patients. It will start to make sense after a while, tho I know it's hard when you're feeling so lousy.
There is also a book called 'Cure Unknown' by Pamela Weintraub. The title is unfortunate, but the author is a trained science journalist whose family got Lyme. The book blends personal stories with the politics of Lyme and the science behind it all. It's long, but very worthwhile if you are feeling up to reading it. It will give a framework for what the dispute is all about in the medical community and what we patients are up against.
About the effects of taking birth control, I don't know, but Lyme does affect the whole hormonal system. Also, major illness such as a hysterectomy puts a huge stress on your body, and that tends to suppress the immune system, which allows Lyme to flare up. I suspect that many people (I know some of them!) have had Lyme for a while, but just feel a little lousy and don't think much about it ... then they get tested or get really ill after surgery like yours and BANG the disease is not held in check as it had been.
My thyroid failed around the same time I got Lyme; whether that was a coincidence, I don't know, but I'm now on supplements and much better for it.
As you read about Lyme, you will come to see how it hijacks many bodily systems, and you'll perhaps see symptoms you have that you had not focussed on. Happens to many of us. The important thing is to find the right doc (LLMD) to work with you.
An LLMD will also test you for other diseases carried by Lyme ticks, called co-infections. An LLMD will, based on your symptoms, know which coinfections to test you for. The medication is often different for the coinfections than for Lyme, so it's important to get a full diagnosis of everything that's ailing you. I've read that perhaps half of all ticks that carry Lyme also carry coinfections.
Take care, let us know if you have any questions/concerns -- if you don't have Lyme after all, then at least it's something you can scratch off the list of possibilities. In your situation, I would do exactly what you are: go find out what's up!
Good for you that you keep pursuing a diagnosis. The medical professionals mean well, but they don't know everything, and Lyme and other tickborne diseases are on the cutting edge of medicine -- and worse, there is a dispute in the medical community about diagnosis and treatment. Many of us have been there.
Everyone's symptoms are a bit different, and Lyme affects many different body systems, including endocrine (body temp, hormones, cardiac, etc.) and cardiac function and muscles generally (Lyme bacteria use magnesium in their reproductive process, but blood tests don't show low magnesium until it is dangerously low -- that happened to me and the docs never figured it out).
Your note that Lyme is not epidemic in Ontario is the conventional wisdom, but it is a point that Lyme specialists dispute strongly. We hear the same thing here in the US, and I had a doc look at me and say "Well, we won't test for Lyme ... you don't look very 'outdoorsy'." That was the first time I had Lyme and a coinfection. Never saw that first tick, but then I got bitten again, not by a tiny Lyme-type tick, but by a big fat dog tick picked up in an urban park ... I took the tick to the doc and had it tested, and yes, it had Lyme and a coinfection different from my first infection.
Current medical standards are that Lyme is hard to get and easy to cure, but we the public are finding that not to be accurate. It takes time for medicine to progress, and we are caught in that time warp right now. Fortunately there are some openminded docs who are looking out for us, but it takes some effort to find them sometimes, because in some jurisdictions, their medical licenses are at risk for treating more aggressively and longer than the current so-called standards. That is why you don't see MDs names printed in the open here.
Canada has a problem with the national health regime, because when the national health says X is the treatment for Y disease, then that's the end of the discussion. And the docs who do not understand the menace that Lyme is are the ones who control the standards of diagnosis and treatment. In the US, in many states, there is 'freedom of conscience', under which MDs are permitted to practice according to their view of what is appropriate.
I would suggest that you educate yourself as much as you can, but searching "canada lyme" to find patient groups who can help you find diagnosis and treatment by what we Lyme patients casually call "LLMDs", which is slang for Lyme-Literate MDs, meaning those who understand that Lyme does not equal the sniffles. There is or was a group called canlyme that might help you, but do some searches and you'll be surprised what you find.
Some docs will tell you that if you didn't see a tick or get a round 'bullseye' rash that you cannot have Lyme, or 'we don't have Lyme here' -- and then they have no idea what is wrong and send you around in circles.
Also I suggest you go to ILADS [dot] org, under the third tab called 'About Lyme' and down to Burrascano's 'Diagnostic Hints ...'. Dr Burrascanno was and is a leader in Lyme diagnosis and treatment, fighting the medical establishment for years in Connecticut. The posts on that website are meant for medical professionals, but are also accessible to patients. It will start to make sense after a while, tho I know it's hard when you're feeling so lousy.
There is also a book called 'Cure Unknown' by Pamela Weintraub. The title is unfortunate, but the author is a trained science journalist whose family got Lyme. The book blends personal stories with the politics of Lyme and the science behind it all. It's long, but very worthwhile if you are feeling up to reading it. It will give a framework for what the dispute is all about in the medical community and what we patients are up against.
About the effects of taking birth control, I don't know, but Lyme does affect the whole hormonal system. Also, major illness such as a hysterectomy puts a huge stress on your body, and that tends to suppress the immune system, which allows Lyme to flare up. I suspect that many people (I know some of them!) have had Lyme for a while, but just feel a little lousy and don't think much about it ... then they get tested or get really ill after surgery like yours and BANG the disease is not held in check as it had been.
My thyroid failed around the same time I got Lyme; whether that was a coincidence, I don't know, but I'm now on supplements and much better for it.
As you read about Lyme, you will come to see how it hijacks many bodily systems, and you'll perhaps see symptoms you have that you had not focussed on. Happens to many of us. The important thing is to find the right doc (LLMD) to work with you.
An LLMD will also test you for other diseases carried by Lyme ticks, called co-infections. An LLMD will, based on your symptoms, know which coinfections to test you for. The medication is often different for the coinfections than for Lyme, so it's important to get a full diagnosis of everything that's ailing you. I've read that perhaps half of all ticks that carry Lyme also carry coinfections.
Take care, let us know if you have any questions/concerns -- if you don't have Lyme after all, then at least it's something you can scratch off the list of possibilities. In your situation, I would do exactly what you are: go find out what's up!
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