posted
I was wondering how long you can have lyme before receiving a diagnosis. I have not been well for months and my symptoms are symptoms of lyme (they seem to be getting worse!). Doc thinks is stress as blood work, CT scan all come back fine (not been tested for lyme specifically) and while i do have a lot of stress which i believe may be aggrivating whatever is wrong, i don't believe that is the cause. Anyway, I had a classic lyme bullseye rash 11.5 years ago. went to doc who gave steroid cream which did not seem to make it heal fast at all. i immediately thought lyme but was working at a northern camp and also thought there was no lyme causing ticks around. I don't remember being bit by anything, just had this rash. Nurse asked what the doc had said and she confided that she thought it looked like lyme. Anyway, I had been diagnosed with bronchitis at the same time (I was also going in for illness) and had been diagnosed with bronchitis many times since and a few years later with asthma. I would sometimes get a numbness/weakness in an arm or leg (usually arm) and had a few times where I could not use one of my arms driving. I also had a lot of pain in my collarbone area (more on right side but sometimes on left). These have been on and off since. I had also been quite fatigued and had low iron numerous times. In the past 3 or 4 years I have had bouts of dizziness/lightheadedness that I have never had an answer to. This past spring I got really ill. I was so tired and weak I could not go to work and I could barely lift my arms. I was told sinus infection, but azythromycin did nothing. I was off work more than a week. I forced myself back in the end and tiredness/weakness gradually lifted though never 100%. Since then I have had a feeling as though my ear is blocked/full (though doc says it looks good) and head pain in around and behind my ear as well as in the back of my head on this side. It comes and goes but lately it is more here than not. I also have very sore shoulder/collarbones, sore breasts (for a few years), swollen lymph nodes and a very sore neck (all the way down). I also had all my teeth fixed in the last year and was told they are all good, but yet some of them still hurt (one never even got treatment as there is nothing wrong with it). Anyway, I was beginning to think I was going crazy and in researching my symptoms stumbled on this site and remembered how I had suspected lyme so long ago. I also read on another site that lyme rash can show even 30 days after bite (and I would have been in the southern part of the province a few weeks prior). Now i was wondering if lyme could be a possibility after all these years. and is it possible that they syptoms increased dramatically in the past several months? I also have numbness in both arms and wrist pain. I have also had bouts of nausea/cramping and pelvic pain.
Posts: 9 | From canada | Registered: Nov 2010
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posted
I am from Canada too! What province do you live in? I have been ill for 2.5 years but was diagnosed after 1 year of symptoms. Although I never tested positive for Lyme through Canada's testing, I did test positive for Bartonella, a coinfection of Lyme. I have a lot of pain, burning, numbness, shortness of breath etc, etc. Like you my list is long and the disease has at times been debilitating. If you suspect Lyme you have come to the right place there are some very knowledgeable people here.
Posts: 199 | From Niagara Falls | Registered: Dec 2009
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posted
Sorry to answer your question I got symptoms shortly after finding a tick but I think it can be dormant for years as you suspect has happened in your case.
Posts: 199 | From Niagara Falls | Registered: Dec 2009
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posted
I and I can longer concentrate/focus like I used to and I am falling way behind at work!
Posts: 9 | From canada | Registered: Nov 2010
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posted
that is what i was thinking. I know that something is wrong. Do you know if there are other things that can cause a bulls eye rash the same as the lyme disease one? I definately had this type of rash.
Posts: 9 | From canada | Registered: Nov 2010
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posted
I live in manitoba, but I grew up right next door to you (in St. Catharines). Sorry, I only just saw your first post.
Posts: 9 | From canada | Registered: Nov 2010
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posted
Bulls-eye rash is diagnostic of Lyme Disease.
Manitoba is 'waking up' to Lyme Disease...there have been some very positive moves in the last year or so.
Jim Wilson, who heads up Canlyme, knows all about this. You can contact him via www.canlyme.com and he might be able to point you to someone locally who could help.
Posts: 250 | From canada | Registered: Oct 2007
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posted
I had lyme for decades before it was diagnosed.
For many years I could manage it with supplements and lifestyle, but clearly had health problems. Then I got bitten again and slid downhill to the point of being bedridden over a period of a couple years.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I think BettyG said her Mom had it for 80+ years supposedly.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
thank you! i will definately be looking into this further. I just hope my doc will cooperate and not think I am nuts. What kind of testing should I ask for?
Posts: 9 | From canada | Registered: Nov 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sorry, I could not read your post, but -
Me, too: I had lyme for decades before it was diagnosed.
Yes, indeed, one could be born with it. Borrelia was around for a very long time before it was discovered.
Rather than wonder if your doctor would treat it (assume they will not) contact your local lyme support groups to find a lyme literate MD (LLMD). At least find out your options before posing questions to your PCP. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- canadiangirl,
Many here have neurolyme with vision problems, dizziness and attention problems. Large blocks of type can appear as a big swirl of grey splotches. So that more can read - and reply to specifics, here's your post broken up for easier reading. I just put the bullets in for my own attention span - and they may help others zero in on key points. ---------
canadiangirl writes:
I was wondering how long you can have lyme before receiving a diagnosis. I have not been well for months and my symptoms are symptoms of lyme (they seem to be getting worse!).
Doc thinks is stress as blood work, CT scan all come back fine (not been tested for lyme specifically) and while i do have a lot of stress which i believe may be aggrivating whatever is wrong, i don't believe that is the cause.
Anyway, I had a
�� classic lyme bullseye rash 11.5 years ago. went to doc who gave
�� steroid cream which did not seem to make it heal fast at all. i immediately thought lyme but was working at a northern camp and also thought there was no lyme causing ticks around.
I don't remember being bit by anything, just had this rash. Nurse asked what the doc had said and she confided that she thought it looked like lyme. Anyway, I had been diagnosed with bronchitis at the same time (I was also going in for illness) and had been diagnosed with bronchitis many times since and a few years later with asthma. I would sometimes get a
� numbness/weakness in an arm or leg (usually arm) and had a few times where I could not use one of my arms driving. I also had a lot of pain in my collarbone area (more on right side but sometimes on left). These have been on and off since.
I had also been quite � fatigued and had � low iron numerous times. In the past 3 or 4 years I have had bouts of
� dizziness/lightheadedness that I have never had an answer to.
� This past spring I got really ill. I was so tired and weak I could not go to work and I could barely lift my arms.
I was told sinus infection, but azythromycin did nothing. I was off work more than a week. I forced myself back in the end and tiredness/weakness gradually lifted though never 100%. Since then I have had a feeling as though my
� ear is blocked/full (though doc says it looks good) and head pain in around and behind my ear as well as in the back of my head on this side. It comes and goes but lately it is more here than not.
� I also have very sore shoulder/collarbones, sore breasts (for a few years), swollen lymph nodes and a very sore neck (all the way down). I also had all my
� teeth fixed in the last year and was told they are all good, but yet some of them still hurt (one never even got treatment as there is nothing wrong with it).
Anyway, I was beginning to think I was going crazy and in researching my symptoms stumbled on this site and remembered how I had suspected lyme so long ago. I also read on another site that lyme rash can show even 30 days after bite (and I would have been in the southern part of the province a few weeks prior).
Now i was wondering if lyme could be a possibility after all these years. and is it possible that they syptoms increased dramatically in the past several months?
� I also have numbness in both arms and wrist pain. I have also had bouts of nausea/cramping and pelvic pain.
(canadiangirl) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Canadian Girl - If you had the Bullseye rash you have Lyme. There can be less virulent strains and it can go dormant but the Bullseye rash means that you definitely have Lyme disease.
Posts: 2232 | From USA | Registered: Aug 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With that rash, that's clearly lyme. Steroids (even topical cream) can make lyme much worse.
AVOID ALL STEROIDS (unless in a life-threatening emergency and then, with proper antibiotics on board first).
Babesia (another tick-borne infection) can cause low iron.
You used the words "nuts" and "crazy" - please drop those from your vocabulary. Too many doctors are quick to call us that but we have to stand up to truth. There are scientific explanations - it's just that most doctors are too lazy to learn more - and too quick to label and treat patients badly.
Just a caution - never, ever, say to any doctor that you think you might be "crazy" - I remember being so perplexed and confused that I even asked a couple doctors who could find nothing wrong if I might be crazy. They thought so, indeed. And the psych drugs nearly killed me.
It took decades of severe illness before I was finally diagnosed with 3 tick-borne infections. Years beyond that, diagnosed with 4 other chronic stealth infections.
And that experience numbers in the thousands across the continent. Most doctors have no clue. Most patients are discounted and tossed out like the trash. Find a good doctor who knows what they are doing. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by METALLlC BLUE: Your entire life.
Ditto
In my case, I had it for 3 + decades before diagnosis. Most likely was infected congenitally and then reinfected several times over throughout my life. I spent tons of time in the woods and wild environments (all over the U.S., in Canada, and England) and have had dozens of known tick bites, as well as flea and biting fly bites.
By the way, you mentioned having recurring low iron. I would definitely find a very good LLMD and be evaluated for co-infections. Some co-infections, like Babesia (causes Babesiosis), can cause changes in iron levels (and related levels).
posted
I never had classic sx, no rash, no flu, no anything, just started getting achy around the time i started doxycycline 8 years ago. Just found out it was lyme this year. So sad that it can go undetected for so long but, feeling lucky i finally found out.
posted
thanks again for all your input. I am pretty sure that there is no local lyme anything. I would doubt even in the province but I currently reside north of the 53rd parallel in a fairly small town. but if anyone knows anything about lyme support either in manitoba or saskatchewan (larger centres in SK are closer for us) I would be happy to hear it:) I have not said anything to the doc about him thinking i am crazy, I just fear that he might. but it is a good point not to actually say that to him. I do plan to make an appointment this week and I do plan to ask to be tested for lyme (first then I will bring up co-infections), but I am unsure of what to ask for specifically if he does not know and I have read a lot of things about tests coming back negative anyway. any advice there?
Posts: 9 | From canada | Registered: Nov 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96109 | From Texas | Registered: Feb 2001
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I had it 20 + years before being diagnosed. Have the medical records with the bullseye rash - but at the time, Lyme was not on anyone's radar.
It was relapsing/remitting - so I had some good runs. Interspersed with periods when I'd be (literally) down in bed for months at a time.
You had the rash. You have Lyme.
Follow the advice above. And get an LLMD. You'll get better.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
the crazy part is when i got that rash the first thing i thought was lyme. but when i went to the doctor he said 'a bite of somekind' and gave me cream and sent me on my way. i never asked about lyme because back then i was foolish enough to think a doctor would know what they are talking about! I can't get into my doc until dec the second week of december, so for now i have to wait. I am also kind of scared by the fact that the treatment seems to be antibiotics as I am allergic or intolerant to so many. I can't take cillins, sulphas or any mycins except azythro.
Posts: 9 | From canada | Registered: Nov 2010
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Decades here too. Doctors just told me some nutty things that made no sense when I said I was feeling too tired.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
my symptoms (mostly pain) seems to be getting worse. Any advice on how I can treat that (vitamins, diet and such) until i can see the doctor?
Posts: 9 | From canada | Registered: Nov 2010
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but, feeling lucky i finally found out.
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