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Infectious Disease Dr says not Lyme

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Posted 10/30/2017 8:13 PM (GMT 0)

Cariboogirl said...
wow, that's a lot of info! I wish someone with your knowledge was walking into these appointments with me! But doctors seem to take offence at being told something they might not know.
When my GP first made contact with this particular ID Dr to set up my appoint, he had him on speaker phone so I could hear. He told my doctor to put me on 2 weeks of antibiotics and said 'in nearly all instances, this will clear it up and the matter will be resolved'. So I was a little hesitant in going to see him as my understanding of Lyme, although very limited, was that it was not something that you could give somebody a few weeks of antibiotics at any point and they'd be cured. Now that he has already told me he is nearly 100% sure I do not have Lyme, despite a positive biopsy, I guess I am on my own. One of my greatest fears is that he will start treating me for something I DON'T have, instead of Lyme.


You don't have to start treatment for something else...they can't force you.

So, you can tell them you're not interested because you have Lyme disease...or you can just nod your head, placate them and not fill whatever prescription they give you....that's up to you.

Fortunately, I didn't have any of the Specialists saying I had something else. I was really, really fortunate.
When I saw a few of them AFTER my diagnosis, not one tried to tell me I didn't have lyme...no eye-rolling...but I realize that isn't the 'norm'.

Actually the Neurosurgeon - seemed hesitant to shake my hand at the end of the appt where I told him I was diagnosed with LD. lol.
Posted 10/30/2017 8:34 PM (GMT 0)

Girlie said...

Actually the Neurosurgeon - seemed hesitant to shake my hand at the end of the appt where I told him I was diagnosed with LD. lol.


He didn't think you have it but thinks it's contagious by contact? That would be funny if it wasn't so sad.
Posted 10/30/2017 8:55 PM (GMT 0)
^ I think maybe she meant he was skeptical of her and her "diagnosis", in his mind.
Posted 10/30/2017 9:49 PM (GMT 0)

mudshark said...

Girlie said...

Actually the Neurosurgeon - seemed hesitant to shake my hand at the end of the appt where I told him I was diagnosed with LD. lol.


He didn't think you have it but thinks it's contagious by contact? That would be funny if it wasn't so sad.


No - he didn't negate the lyme diagnosis. None of the specialists I saw did surprisingly.
Posted 10/30/2017 9:51 PM (GMT 0)

jackinthebox said...
^ I think maybe she meant he was skeptical of her and her "diagnosis", in his mind.

"Fortunately, I didn't have any of the Specialists saying I had something else. I was really, really fortunate."


the Neurosurgeon never said he was skeptical.
Posted 10/30/2017 10:20 PM (GMT 0)
It will be interesting to see what my GP says when I see him next, as he told me it was Lyme from the biopsy and sent me to the ID guy. At any rate, I now have an appointment with a ND mid-November. I don't know if I could ever come up with the money to fly to the States and find an actual Lyme literate medical doctor and pay their fee, but right now I can fly to the coast and come up with the money to have a consult with someone who believes Lyme exists. It's a start in the right direction.

As to the person asking about changing Doctors, I live in a very small town and changing your primary care doctor is nearly impossible. I actually really like my GP and he's been good for most other things. I will give him credit that he said it was definitely Lyme and I needed to see a specialist right away - not his fault the specialist is the way he is. He will, however, follow that lead, and that's too bad. Seeing a different specialist IS impossible, either your GP refers you or you can't go in Canada.
Posted 10/30/2017 10:49 PM (GMT 0)
Cariboogirl -

According to the strictest treatment guidelines, which are the Infectious Diseases Society of America Lyme treatment Guidelines, an EM rash, based on visual identification (not even by culture), warrants up to 4 wks antibiotics. I can cite the statements for you.

The CDC recommends MDs diagnose based on a clinical evaluation, which is really your exposure (check), plus your symptoms (check) and add to that an EM rash - you are a VERY EASY diagnosis. And, your GP really has an obligation to provide you at least prophylactic abx--even though he is not a specialist (Girlie - correct me if I'm wrong about that). Your GP can also easily follow the treatment guidelines, which would be up to 4 wks according to these guidelines, given continued sx.

We can also share with you citations for ILADS treatment guidelines that would extend tx for a MINIMUM of another 2 wks, if your symptoms continue. Your GP can do this for you, as well.

This would at least tide you over until you can figure out something else---or convince him to continue treating you. There are also LLMDs who might consult with him to help guide him.

-p
Posted 10/30/2017 10:58 PM (GMT 0)
I don't know if our doctors would consider guidelines from America. At one of my appointments with my Gp, I argued for a continuation of antibiotics (this was back in June) and he said no, not without further confirmation. And then I had to go back a couple more times and beg him to do something as the rash was showing up in other places, and that's when he said he was willing to do a biopsy. But he was adamant their guidelines state 2 weeks only of antibiotics. The ID doctor I saw also said 2 weeks of antibiotics was all that's needed. I honestly don't know if this is a Canada wide policy, or just a provincial one, or even just an area one. I don't think we have ANY LLMD's in our area, there are a few ND's, but the common belief here of MD's is that ND's are quacks to be avoided.
Posted 10/31/2017 1:39 AM (GMT 0)

Cariboogirl said...
It will be interesting to see what my GP says when I see him next, as he told me it was Lyme from the biopsy and sent me to the ID guy. At any rate, I now have an appointment with a ND mid-November. I don't know if I could ever come up with the money to fly to the States and find an actual Lyme literate medical doctor and pay their fee, but right now I can fly to the coast and come up with the money to have a consult with someone who believes Lyme exists. It's a start in the right direction.

As to the person asking about changing Doctors, I live in a very small town and changing your primary care doctor is nearly impossible. I actually really like my GP and he's been good for most other things. I will give him credit that he said it was definitely Lyme and I needed to see a specialist right away - not his fault the specialist is the way he is. He will, however, follow that lead, and that's too bad. Seeing a different specialist IS impossible, either your GP refers you or you can't go in Canada.

The ND you are seeing is an ILADS member and can treat as well as many of the LLMD's in the U.S.
Unfortunately - we've reached a point now with my treatment where I'm not pleased - with his lack of recognition to treat Babesia...BUT, I read/hear the same from LLMD's here in the U.S. as well.

There definitely are better LLMD's in the U.S., but there are also ones who aren't as good as this LLND.
He has healed many patients. But he ain't no Dr. J. or Dr. H.

I hope he works out for you.
Posted 10/31/2017 1:44 AM (GMT 0)
There is one LLMD I know of - I believe he's an Dr. of Internal Medicine in Alberta - Dr. H.

He is the Dr. with a year or two waitlist...and he does operate within our Medical Services...so whoever gets to see him - sees him for free.
Posted 10/31/2017 8:34 PM (GMT 0)

Cariboogirl said...
I don't know if our doctors would consider guidelines from America. At one of my appointments with my Gp, I argued for a continuation of antibiotics (this was back in June) and he said no, not without further confirmation. And then I had to go back a couple more times and beg him to do something as the rash was showing up in other places, and that's when he said he was willing to do a biopsy. But he was adamant their guidelines state 2 weeks only of antibiotics. The ID doctor I saw also said 2 weeks of antibiotics was all that's needed. I honestly don't know if this is a Canada wide policy, or just a provincial one, or even just an area one. I don't think we have ANY LLMD's in our area, there are a few ND's, but the common belief here of MD's is that ND's are quacks to be avoided.

Generally, the Canadian system and European health system as well - follow the CDC parameters treating infectious diseases.

One thing you can try is to print out the info and bring it with you. When resistance comes up in the discussion, you present the MD with the information. This not only alerts him that you are informed and know what you're talking about, but also forces him to acknowledge the guidelines and either acquiesce, or give you a better reason for refusing treatment.

And then when he does that, you can ask him what is informing his decision - what scientific trials, etc. are guiding him because as you read the guidelines, he is supposed to do 'x, y or z'... again, this forces him to follow the guidelines that are already there, since almost ALL MDs will always follow the structured "norm". It's not easy to "work" an MD like this but it's probably necessary until you can get to a specialist.

-p
Posted 10/31/2017 9:42 PM (GMT 0)
You could ask the Dr to visit the CanLyme website. There is a section for Dr.s and it links to ILADS Guidelines including DrBurrascano Treatment Guidelines.

But you did get an appt scheduled (with an LLND) within 3 weeks anyway, right?

/canlyme.com/for-physicians/
Posted 10/31/2017 9:49 PM (GMT 0)
Yes, I am flying to Vancouver to see an LLND Nov 15. Seeing as he specializes in Lyme, I am hopeful I will not have to do any convincing to him, as I still have the bullseye rash, and I have the lab report verifying EM from the biopsy to take with me. It would be nice to think there is an MD that I could go to who would treat me for Lyme and it would be paid for thru our medical system.
Posted 11/1/2017 8:48 PM (GMT 0)
You are definitely armed with enough "proof". Let us know how things go! Wishing you luck - time is of the essence so call every other day or so and in a sweet way, ask if they have any cancellations. Bug them...

Fingers crossed -

-p
Posted 11/1/2017 8:55 PM (GMT 0)

Cariboogirl said...
Yes, I am flying to Vancouver to see an LLND Nov 15. Seeing as he specializes in Lyme, I am hopeful I will not have to do any convincing to him, as I still have the bullseye rash, and I have the lab report verifying EM from the biopsy to take with me. It would be nice to think there is an MD that I could go to who would treat me for Lyme and it would be paid for thru our medical system.


I doubt if you will need to convince Dr. C.
Posted 11/1/2017 10:35 PM (GMT 0)
Thanks all. Pirouette, I wish I could be on a waitlist to get in sooner but the logistics of flights and other things means spur of the moment can't really happen. It's only 2 weeks though, so not so bad!
Posted 11/3/2017 6:09 PM (GMT 0)
2 wks is awesome! Be sure to let us know how things go.

I the LLMD doesn't ask for you to fill out paperwork in advance, I recommend filling out this questionnaire and bring results with you to share - or there is a list in the "New to Lyme?" thread:

Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

-p
Posted 11/3/2017 7:24 PM (GMT 0)
I will be updating my last thread as soon as I have time, but for now I just want to let those who have been told (by Dr.s), or who understandably think - that CT...is somehow more equipped and willing to treat Lyme and Co - NOTHING can be farther from the truth! I am appalled by the lack of knowledge, compassion, medical standards, and MD's (especially Infectious Disease "Dr.s") who know ANYTHING about this disease, who are willing to treat it, or who will even ACKNOWLEDGE it. Whether it be with the "proof" of a CDC ELISA "Critical High" result combined with a CDC -11 reactive bands result, or with clinical evidence following tick exposure with Erythema Migrans and severe symptoms... following a tick feeding of 72 hours...the denial and dismissal that goes on by the "medical field" in this GOD FORSAKEN joke of a state - is criminal !!! It is absolutely disgusting and PLEASE, PLEASE know and believe me - that here in the epicenter of this disease ...where the first research began on this in the 70's....it is THEE VERY WORST PLACE to get sick with LD because you can't get any help for it!!! Richard Blumenthal has at least tried (wherever mine or your political affiliation or loyalty lies) - to address this, fight for justice, and get this Lyme Disease fiasco taken care of on behalf of us in this state who are suffering. Whether it be here in CT - or any other state in the country...this refusal to do what is right when it comes to a central nervous system disease as well as an autoimmune system disease...is a travesty that breaks my heart and blows my mind. Yes...here in CT, we have many, many, people who have Lyme Disease and those who don't have it...all know or are related to someone who has had it, has had it and died, or who currently DOES have it.
Posted 11/3/2017 8:36 PM (GMT 0)
Thanks Pirouette, I started a spreadsheet last week detailing everything I can think of since I first found the bullseye rash back in May. I will also print out info to take to my family doc because he will be irritated that I went to an LLND after the specialist (ID Dr.) he referred me to specifically told me not to. Going to see someone else never even came up, he just started this rant, out of the blue, about how there were quack doctors out there stating they specialized in Lyme, just to get money from unsuspecting desperate people and I needed to know that Lyme was 1)rare 2)usually taken care of by one - two week course of antibiotics and 3)any doctor stating he specialized in Lyme should be avoided.

And speaking of, the ID Dr. just called this minute to tell me the Lyme serology was negative, so I definitely do not have Lyme and he is still waiting for the results of some other tests he ordered that look at other auto-immune/inflammatory conditions. I told him more rashes were cropping up and should I be on more antibiotics. He said absolutely not.
Posted 11/11/2017 10:35 PM (GMT 0)
I was negative on the ELISA (done through an MD) and then positive on the Igenex WB(ordered by my ND and I had to pay out of pocket). I had many, many of the symptoms of lyme. After I got the Igenex results I saw an ID who told me I was a false positive. Or that there was a slim chance I might have some other tick-borne illness, but not lyme...I agree. Lots of stories of the same.
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