So, I had my first appointment with a lyme-literate doctor yesterday.
Unfortunately, I live in Canada (Alberta) and there are no LLMD's in western Alberta, so I had to see a LLND.
She was amazing- usually, I come out of doctor's appointments in tears.
This time, I went in in tears (it's the anxiety), but left feeling like there might be a light at the end of the tunnel.
BUT- the problem is that Naturopaths are not covered by my health care, and they can't prescribe antibiotics.
She can facilitate testing through Igenex (but you do it yourself, so you don't pay extra, which is nice), and she can read the results of the test, and recommend a treatment, but an MD is needed to prescribe antibiotics.
(She can give herbal supplements, but she says these don't work as well, and they are expensive and not covered by health care).
She is willing to take the time to explain the test results and treatment plan to my GP- but he has to be co-operative.
Essentially, I have to convince my GP that I have Lyme. And I need help!
My doctor has admitted he is stumped, but he selectively chooses only to listen to certain symptoms.
Right now, he just thinks I have chronic shin splints and tendonitis.
When I try to talk about other things (tingling, twitching), he either just ignores me, or says "there's nothing here to indicate any problem"
(which is essentially saying I'm making it up.)
After a point, I stopped brining all of my symptoms to him, because of this.
The problem with this is that now when I do mention the symptoms, I'm worried that it will seem suspicious when I bring them all up at once, in conjunction with Lyme...
It's not like I can just tell him that I got fed up with him and stopped telling him things.
I know I should have talked to my GP more, but I didn't, and now I need to find the best way to approach this so that I get his support.
He's not a bad doctor, he just a) likes to handle everything himself (getting a referral is like pulling teeth) and
b) likes to stick with "traditional" treatments (hence why he is still just prescribing rest and NSAID's for my legs, despite the fact that it's obviously not working).
So, has anyone else had to convince their GP?
Any advice on the best way to approach this?
Thanks!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
sorry, my gp does not think lyme exists in texas....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
My GP doesn't think it exists either. In fact, I've gone through 5 or 6 GPs. I can't find one that's covered by insurance who does.
Posts: 710 | From West Coast | Registered: May 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I wish I could help, but my GP said it was "highly unlikely" I had Lyme when I suggested it to her.
Ha! The following month I went to an LLMD and not only do I have Lyme, but Bartonella and Babesia too.
Maybe if you went to "Seeking a Doctor" and asked for a referral to aLyme-friendly GP in Alberta someone would be able to help you.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I am in BC. I think your Doc must have gone to the same college as mine. I persisted with my doc and when things got too overwhleming I would type it all out and drop it at his office a couple of days before I went in. With the help of Dr. M I did get on abx for a while even tho my doc was most reluctant. Recently I went to a LLMD/LLND in Seattle. Put all the expenses on the old credit card, and luckily for me my doc matched the LLMD's prescription for 2 months. After 2 months will do a review with LLLMD and my doc. Its scary to have to bully your doc, especially when they really do care (and I know mine does). Its scarey how much it all cost. Its scarey waitng to see what the drugs do. ITS ALL TOO SCAREY. maybe you can do the letter thing too - give him time to ponder before he sees you. Good luck...
Posts: 234 | From BC Canada | Registered: Aug 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I've been told by every PCP Lyme doesn't exist here. It's never Lyme - of course it must be sudden depression, anxiety, pyschosomatic disorder, or other suppressed pysch issues unresolved.
It's hopeless to try. I don't bother. 99% of doctors care less about people. We're just another check for their bank account. The only ones who show compassion/care are alternative docs and when you think about it that's how they attract business. If you treat / listen to the abandoned patient, you're a hero and attract more business to your practice. Network docs don't need this angle. At the end, it's all about the $$$. Good luck finding that 1%. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
This is going to sound too simple but it is true. All I did was make an appointment and talked with him. I also printed out Dr. B's guidelines and some other stuff for him to look over after the appt.
My GP knew me well before I got sick. I did a substantial amount of volunteer work with him and his wife (a D.O. also). I respect them both personally and professionally.
To be honest, I was nervous before the appointment because of all the horror stories that i've read. And, Lyme disease is practically unheard of around here. I really wanted my GP to be supportive and cooperative in my treatment.
So, I told my GP that I had found a new specialist who believed that I may have Lyme disease. (At the time my test results were still pending.) My doctor threw his hands in the air and exclaimed "why didn't WE think of this before!" and "didn't you see an infectious disease doctor a couple years ago?" and "I can't wait to tell Dr_ !".
The other doctor he was referring to was my sweet GI doc. He was so stumped by the severity of my case that he was literally going gray (so he told me every time I saw him). He worked so hard consulting with specialists from all over the country.
I am blessed to have a supportive GP. He was so frustrated to not be able to help me for so long that the relief was tangible when I presented him with the answer. He also knew how hard I was working to get better, all the specialists i'd seen, the alternative therapies i'd tried, ect... Doctors don't like it when they are not able to figure out the problem and help you.
Nicole, good luck with your doctor's appointment. Take the time to talk with your doctor face to face. Be open and honest, present the facts, and don't accuse (you don't want to put them on the defense). They probably feel bad for not being able to diagnose you themselves. Remember, they became doctors to help people and relieve suffering. And if it doesn't work out in the end, find another doctor.
Posts: 5237 | From here | Registered: Nov 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
if you doctor is in ohio, please pm me so i can give his name to my sister
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
I am thinking the same thing! Where at in Ohio? B/c I need a new GP too!!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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I must have gotten lucky because my GP was the one who suggested I get tested.
The problem I had after that was with all the other Dr.s telling me the positive test result was incorrect.
Posts: 94 | From Kansas City Area | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
It is frustrating that it all has to be so difficult.
It's amazing that Dr's have no accountability when it comes to missing our diagnosis for many years.
When I requested a western blot from Igenex, my GP told me I didn't need it and was wasting my money.
He would only do an ELISA which was negative, and therefore he wouldn't order anything else.
The next Dr I went to (Rheumy) agreed to order a western blot, but not from Igenex. It showed only band 41....so I was told..nope, it isn't lyme.
The third Dr (a fibromyalgia/CFS specialist in FL whom I did phone consults with) agreed to order the western blot from Igenex.
I had several species specific bands present, but he said "I don't think lyme is your problem" because the official results said CDC negative and Igenex negative.
I knew better from reading Dr B's guideines and because of my history and symptoms.
My point is that it is not easy to convince most Dr's of anything that wasn't their idea...since many of them think they know everything.
I would print out Dr Burrascano's 2008 guidelines for your GP. Study them yourself so you know exactly what to say to him....
Review your history and symptoms with him that indicate lyme. Fill out the symptom checklist in Dr B's paper, pages 9-11, so your GP can see a concrete example of all your symptoms.
Ask your LLND to consult with your GP about your diagnosis....and vice versa.
There is alot of other info that you could print for your GP.
Ask him to go to the ILADS website and read through the info there.
There is good basic info in this booklet which has a very comprehensive symptom checklist also...
Be well prepared before you see your GP....know the facts so you can educate him when he disputes what you are saying.
Good luck!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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