I just finished my 21 day initial Doxy treatment with my PCP for Lyme on Monday. I have the appointment with the LLMD on Oct 20th.
I went to my PCP with my husband yesterday because I have been getting increasingly worse since starting the antibiotic and going downhill even more rapidly since finishing it.
The PCP said that I will probably feel crappy for a few months but that since I have done the antibiotics I no longer have Lyme. I actually like my PCP and believe that she really means the best, but I also know that if you aren't better after antibiotics that you DO still have Lyme!
She has been very open about all of the controversy with Lyme and said that if we have the money for the LLMD that that they can defiantly help me feel better, but that if we don't go I will be okay.
My husband, who was totally on board with the LLMD before this appointment, now isn't sure about it. It's not like he doesn't take my health seriously, but he feels like the LLMD thing may just be a ploy for doctors to make money off of us poor vulnerable people suffering with Lyme.
The doctor said that they will treat for a few months and then you will feel better, but that I will have felt better without the additional treatment and costs as well.
I completely understand how my husband is confused and skeptical, as I even had a moment of uncertainty, but how do I convince him that the LLMD is important?
We also discussed pushing back my LLMD appointment a month or 2. Would this be a really bad idea? Will treatment just be worse the longer I wait? I am already do so bad, I can barley walk and I don't think I could handle getting much worse! : (
Posts: 66 | From New York | Registered: Sep 2015
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
First and foremost, DO NOT PUSH BACK YOUR LLMD APPOINTMENT!!!!!!!
What you felt and what you are feeling now is EXACTLY how one feels when first starting out treatment. It is called herxing.
Your PCP gave you 21 days and says you no longer have lyme might be correct IF IF IF you had started this treatment as soon as you got infect...ie, you went in with the bullseye rash.
Since MOST of us here were not diagnosed immediately, sadly, we have to treat much longer.
You will be in best hands once you can see your LLMD. He/she will understand about lyme and the co-infections since most of the time, ticks leave a lot more than just lyme.
Try to hang in there until your appointment on the 20th. That actually is good news for you that you have the appointment already set and can get in that soon.
Many have months to wait. Do NOT NOT NOT postphone that appointment!!!! Have your husband go with you to that appointment and your LLMD would be able to explain why you need longer to treat than any of us could do to convince you.
But GO GO GO!!! Good luck and keep us posted on how you are doing.
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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posted
This is why PCP's are not the ones to see for help with Lyme disease. They have no idea the scope of this thing.
They don't even know how many coinfections you have. You could have bart and babesia, at the very least. You need to find out what you have. Very few patients get ONLY Lyme from a tick bite.
GO to the LLMD appointment as soon as possible.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I know, I really went to the PCP for sleeping pills since I haven't slept in well over a week. I wasn't really looking to her to do anything about the Lyme, I was planning on waiting on the LLMD.
Naturally, like any well meaning doctor though she asked about all of my symptoms and how I was doing and tried reassuring us that I was treated and would get better in time.
I don't really think it will take much convincing though to get my husband to realize that the LLMD is necessary though now that I think about it.
He wants me to get better and my rapidly deteriorating condition should be enough to convince him by the 20th.
Posts: 66 | From New York | Registered: Sep 2015
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He wants me to get better and my rapidly deteriorating condition should be enough to convince him by the 20th.
- Sadly true. So she wouldn't give you a refill?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Education is what shines the light. As hard as it is for you now you have to become better educated about lyme but also you can't be expected to have to defend your intent.
Being put on that kind of defense is too draining. I hope it's not a matter of you having to convince him what you need to do for yourself for your body, your very life.
Just do it. With or without him. You might now go ahead and line up a ride, etc. so that you need not be dependent upon his driving that day - as you may not feel well enough.
This is your job now and you just have to move ahead.
Yes, it would be nice if he could understand this and be a supportive companion but if he's going to be part of this, he'd better step up to the plate and get educated not just about lyme but about the POLITICS of it -- WHY your PCP is not doing her job -- THAT's what he needs to learn -- or keep quiet.
Your husband should honor your decision in this matter and realize that it's his job to become lyme educated if he is going to add his opinion or suggestions.
Clearly - and this is not an insult but a fact - it is clear that he is not educated about lyme. Not by a long, long shot.
Your very life is in the balance now. And he wants to trust a doctor who also is not educated about lyme.
I can see how such blind trust happens, believe me. He might start with watching the film
UNDER OUR SKIN -- tonight. It's on various streaming vendors or go right to their website, just Google the title.
Then watch EMERGENCE, the followup - shows what success can look like.
And read the book: CURE UNKNOWN by Pamela Weintraub about how her entire family dealt with lyme . . . and how she reached a good solid remission / recovery.
Attend a meeting of your local lyme support group. -
[ 10-01-2015, 07:15 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As for your PCP, do not confuse likeability with capability. Do not confuse wishful thinking with fact.
Yes, this is beyond tough. But bit by bit, there will be light at the end and sometimes along the way. Hold on.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
[ 10-01-2015, 07:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Adding to why it is imperative to keep that LLMD appointment:
to be assessed for other tick borne infections;
for a combination protocol that covers the various forms of lyme
How taking just doxycycline (or any antibiotic) ALONE can cause Chronic Lyme:
Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease
- by a leading ILADS LLMD - November 2013
SIXTEEN VITAL POINTS of consideration
[Although, as I recall, his notes about exercise may be too much for some who are still very ill. Remember: no aerobics, but gentle and consistent movement is best to avoid damage.]
[ 10-01-2015, 09:10 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Lymetoo, no she wouldn't refill the antibiotics because she is set in her belief that I don't still have Lyme and that I am just experiencing "post lyme symptoms" or whatever it is that they refer to it as
Keebler, it's true, he means well but he is not nearly educated enough. I am going to sit him down and show him Under Our Skin (He watched part of it but then turned it off because he thought it was too upsetting) and all of the articles that you have posted.
Thanks for all of the information and advice!
Posts: 66 | From New York | Registered: Sep 2015
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