Lyme is virtually not acknowledge in Canada, so very few dr's are aware or believe in it.
When I convinced my Rheum to treat me he agreed. I provide him with info and he consults with my LLMD in the US He's now very interested in lyme and wonders if his CFS, Fibro and other lupus patients may have it.
Let me know and give as many details as you can so I an send him the information.
posted
I was originally diagnosed with Lupus because I had a positive ANA. Than as more blood tests came back abnormal, I was diagnosed with other things.....UGh!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I was diagnosed with Fibro and CFS (and more) before being diagnosed with Lyme and other TBDs.
Declined steadily for 5 years before a nurse practitioner took an interest in my case and began talking to some of her colleagues and friends about it.
She realized that my symptoms mirrored one of her friend's Lyme symptoms. That friend was a vet.
On the advice of the vet, my NP began testing me for various tick borne diseases, and finding positive results. I guess you could say that basically I was first diagnosed by a vet!
-------------------- �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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Peacesoul
Unregistered
posted
Keebler...Thanks much.
Thanks all for your input...keep it coming.
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Peacesoul
Unregistered
posted
Keebler, where did your post go?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I edit frequently just after a new post - needed to fix it.
I've put more here than you asked for, however, it might be helpful if others have similar histories.
------------------------------------------------
'60 Scarlet Fever (approx. age 7); heart murmur;
'71 Mono (seemed to never resolve - during college in Wisconsin);
'72 Tonsils out at age 19; constant ear & respiratory infections; vertigo; severe startles;
'76 Valley Fever (Bakersfield, CA); ulcer (treated by doctor with only half & half); carpel tunnel in both wrists (at age 23); drop attacks (syncope).
'77 Crushing fatigue; brain fog. (Grad School in Boston).
'82 (approx.): FM dx (with absolutely no information or advice);
'84: connective tissue disease, "probable" LUPUS with high ANA; (Doctor said there was nothing I could do for the lupus.)
'90 CFS. High and speckled ANA several times around then. Immune panel with many abnormal markers.
'95 vestibular dx, hyperacusis & severe sensory dysfunction;
'95 chronic porphyria (proto & variegate) by Mayo tests;
'96 seizure disorder (triggered by severe startle from even soft - but sudden - sounds, deep or pulsing vibrations, flashes, motion); EEG's normal; 3 QEEG's all abnormal (but QEEGs are not considered by MD's). Oto-neurologist determined the inner ear to be the problem but told me to get tested for lyme.
'96 Negative ELISA for Bb (lyme).
'97 Igenex positive Western Blot for Bb ; Babesia and HME (human monocytic ehrlichiosis ); [Treatment withheld as no doctor in my state would acknowledge tests or treat. I did the best I could afford with alternative treatment. After 3 years, got 2 months' doxycycline.]
'00 Celiac determined 98% likely, from genetic tests.
'07 Coxsackie virus, positive for a few strains;
'08 Cpn with very high IgG and IgA, indicating persisent chronic Chlamydia Pneumonia (by a few researchers, not by the medical profession in general).
'08 HHV-6 - positive.
=================================
I am sure that some research article by ILADS' authors speak to this. Also some article by CFIDS researchers connect it to lyme.
Garth Nicolson, Ph.D. also has a great new article out. I'll see if I can find that - but it will be much later or tomorrow -
It's good that your doctor is interested. Very few, though, are interested in what they call "anecdotal" reports. So, if your doctor shares comments from here with other doctors, research articles to back that up would be great.
A nonprofit institute dedicated to discovering new diagnostic and therapeutic solutions for chronic mycoplasma infections.
-
[ 30. May 2008, 12:34 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I was diagnosed with CFS in 1989. I was ill for about 3 years but I was able to recover. It may have been Lyme but I have no idea. I lived in Brooklyn, NY at the time so I don't know if I had been exposed to any ticks there.
1997 - diagnosed with Fibromyalgia. Continued to get worse & I was diagnosed with Lyme in 2007 by a doctor at the Fibromyalgia & Fatigue Center in CT.
All of the above diagnoses were clinical. My Western Blot for Lyme was negative by NY State standards. I also had 2 ELISA tests that were negative.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I was diagnosed with Somatization Disorder. My doctor didn't believe me enough to even test me for those others. I don't think docs in the US are too well informed on Lyme either.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I started off with pleurisy and my first sinus infection in college. (I had been working on Fire Island, N.Y.,(tick heaven) that summer.)
The sinus infection was so bad my face swelled to twice its size. The school photographer actually refused to take my senior picture! (He thought I might regret looking at my balloon head years down the road---hey, my kids would love it!)
After that followed years of sinus infections, fatigue and other weird symptoms. Some of my dx:
Peacesoul--you got lucky with your Rheum---I begged mine for 2 years to do a lyme test but he kept insisting I could not have lyme since my pain symptoms were bilateral??! (By the way, he is listed in Washingtonian Magazine on "Best Doctors List" every year)
I finally got smart and found an LLMD--my new doc is also convinced that most people with fibro, CFS, etc, are actually infected with lyme.
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
I had many misdiagnosis's: exhaustion and stress 1994, anxiety & hypochondria 1998, chostochondritis 2001; pre-ms, pre-parkinsons, intermittent guillen-barre, developing RA low positive, possible lupus low ANA, in my head, faking, paranoia for not trusting doctors 2004; epstein barr, chronic fatigue, fibromyalgia, mycoplasma, in my head due to reading symptoms in 2005; cdc positive WB for lyme and cd57 of 22, encephalopthy and neuro lyme 2007 and clinical babs 2008.
Never understood all the pre, intermittent, and possible stuff. I had 7+ lyme tests from qwest from 94 to 07 always negative and had seen 46 doctors before my neighbor diagnosed me with gauranteed lyme. dr. 47 diagnosed me. my RA and ANA tests are now negative and fibromyalgia is off and on instead of always on. the supposed pre ms, parkinson, and guillen symptoms are gone most of the time as well as the cfs. I still herx pretty bad but have goodish weeks as well.
Based on this I think most doctors are idiots and the medical community and government are seriously missing that many of these conditions as well as others could atleast partly be related to lyme. but I am only going by my own experience.
Posts: 48 | From New Jersey | Registered: Aug 2007
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posted
I was diagnosed with depression and CFS
Posts: 370 | From NJ | Registered: Dec 2007
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Peacesoul
Unregistered
posted
quote:Originally posted by not so sublime lyme: Peacesoul--you got lucky with your Rheum---I begged mine for 2 years to do a lyme test but he kept insisting I could not have lyme since my pain symptoms were bilateral??! (By the way, he is listed in Washingtonian Magazine on "Best Doctors List" every year)
I finally got smart and found an LLMD--my new doc is also convinced that most people with fibro, CFS, etc, are actually infected with lyme.
Could be he's a great doc in other respects. We have to cut certain doc'd some slack. This is all still very unknown and they just have little knowledge. If they don't want to learn/listen, we have to not take it personally. We have no idea what goes in their lives. I had one gyno who was BRUTAL. I then found out he was dying of colon cancer, so his mind was in the anger stage when he saw me.
Well it wasn't all luck with my doc. My rheum dx me with lupus and that dx just never sat right with me. I kept up my search and found info on lyme. I fit the criteria so I pursued more info.
I went to my family dr and asked her to send me for an Elisa. As we all know, that was neg. Then I did the whole Igenex route on my own.
At this point I emailed my Rheum to advise him of what I found out about lyme and explained to him that I was going to get tested in the US and also found an LLMD in NY, and if were + that I needed a dr in Canada to treat me. He replied "I'm on board and will help you with anything that you need"
I don't think he knew what he was getting himself into..haha!
I was dx with lyme, went to see him. He was confused b/c he never really believed in lyme and was treating me with consult from my LLMD. A
Actually, when I was dx and went to see him, he was just leaving for a huge conference in Boston and told me there would be speakers talking about lyme, but he had his whole sched. planned so he couldn't make it.
Since this time, he's written my rx's and helped me, but still sits on the fence. He's actually the head of the Rheum clinic at one the largest hosp in my city.
He told me he wanted to speak to his other lupus/fibro and cfs patietns about getting tested but they prob would not want to dish out all the money to get tested. He never spoke to them. He also told me he spoke with his collegues and they "kind of laughed at me when I told them about lyme saying lyme is not in canada" I think at that point he was not as interested in lyme. Of course he still treats me but seems very frustrated.
I know I can get him to learn more, I know he wants to learn more. I just need the right info. He's a super busy dr and I believe also doesn't have a ton of time, but I know I can get him on board.
So yes I got lucky in that he's very cool to be opened minded but also had to work at getting him to listen.
All these replies are great everyone. Thanks so much. Keep them coming
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Peacesoul
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posted
quote:Originally posted by Lauralyme: I can't believe how open minded your Dr is!!
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Wondering if he would watch Under My Skin, contact ILADS and possibly join.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Peacesoul
Unregistered
posted
quote:Originally posted by kam: Wondering if he would watch Under My Skin, contact ILADS and possibly join.
I can get him a copy and see. Maybe tell him it comes with popcorn and skittles...hehe! That is actually a great idea. Where can I order a copy? Do you know?
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I too am Canadian - next door to you in Ontario - diagnosed with FM and CFIDS and told to 'learn to live with it.' Took 23 years for a clinical Lyme diagnosis.
There's a ton of worthwhile information and articles available at Canlyme. Perhaps you can even hook up your doctor with Jim at Canlyme - very knowledgeable - a wonderful active advocate - has his hands in a number of pots so to speak. Or Dr. M who just retired out west.
We certainly need all the help we can get up here. I think we are officially down to 1 LLMD for the entire country with a few other doctors, like yours - here and there showing some interest.
All the best B
Posts: 191 | From Ontario | Registered: Feb 2006
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
Sick 8 years. Diagnosed CFS recently...determined to be lyme with Igenex.
husband may also have it.
Posts: 1104 | From N.California | Registered: Jan 2008
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Peacesoul
Unregistered
posted
quote:Originally posted by brf: Hi PeaceSoul,
I too am Canadian - next door to you in Ontario - diagnosed with FM and CFIDS and told to 'learn to live with it.' Took 23 years for a clinical Lyme diagnosis.
There's a ton of worthwhile information and articles available at Canlyme. Perhaps you can even hook up your doctor with Jim at Canlyme - very knowledgeable - a wonderful active advocate - has his hands in a number of pots so to speak. Or Dr. M who just retired out west.
We certainly need all the help we can get up here. I think we are officially down to 1 LLMD for the entire country with a few other doctors, like yours - here and there showing some interest.
All the best B
Hey neighbor :-) Yep, correct, Dr B in TO is now the ONLY LLMD in all of Canada. How sad is that?!
I've spoke to Jim Wilson in the past and he's a super guy. Very helpful. I did send my Rheum to canlyme, but I suspect he had no time to read the site.
I think he was overwhelmed at first with all the info. He has a lot of fibro patients so if I can show him that others were misdiangonsed, he may listen more intently
Truthfully, I know he believes in it or he would not be treating me, but I think he fears being laughed at by other dr's.
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Mostly, it was a case of Mono I never quite "got over", thus CFS, until Lyme diagnosis.
Posts: 690 | From East coast, USA | Registered: Jun 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
i've been ill most of my life, so this is long!
early 60's - bad headaches - final dx psychosomatic
mid-60's frequent strep throat
late 60's - one and only all-nighter in college, couldn't function next day
early 70's -1st rubella vaccination
1975 - 1st pregnancy - negative rubella titer
1976 - 2nd rubella vaccination following childbirth
1978 - 2nd pregnancy - negative rubella titer
1979 - 3rd rubella vaccination following childbirth
1981 - 3rd pregnancy - negative rubella titer - ob/gyn says no need for further vaccinations, not sure why always negative
early 80's couldn't keep up with my kids physically like my friends did. i sat in one place and called to them, rather than picking up and redirecting.
1986 - multinodular goiter found
mid 80's - often exhausted after working half-days as preschool teacher
1989 - returned to full-time work, 1st time since 1975. had no energy for anything else. became more irritable. diet cokes kept me going, one in early am, one at lunch.
early 90's - returned from school exhausted. needed time to rest before doing anything else, including cooking dinner.
husband suggested going to doctor for check-up when i was exhausted for two weeks after school year ended.
tests normal - dx - difficulty transitioning from working full-time to not working.
1996 - husband left claiming, among other things, i was making up my symptoms to get back at him for traveling - stress from divorce left me totally exhausted.
posted
I was diagnosed with FM in 2005 after suffering for many years. Saw neuro after neoro who tried every painkiller under the sun to no avail.
Finally, they sent me to a rheumy who diagnosed me with FM on one visit.
A year later, after my daughter had been diagnosed with Lyme, she mentioned that a lot of our symptoms were similar and recommended I see her LLMD, which I did.
Lo and behold - I have Lyme.
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