I would really appreciate some advice on this. I've been seeing a new doctor for about 7 months now was with the last doctor for over a year.
I've tried a lot of treatments including 14 months straight on iv's, nothing, no improvements probably worse.
So my new doctor is considered top notch, had no choice been sick for 9 years, at least prob infected as a kid. I usually see the pa but you see the doctor every so many visits. So a few months ago I saw the doctor and I was very very happy with him, he is very positive and he just lifted my spirits.
When I saw the doctor I was having an exceptionally bad day, could barely hold my head up. Doctor told me I will get you better, I just need to figure some stuff out, very understandable. Chronic lyme is complex and I'll take anything at this point.
So he took me off all antibiotics, left me on plaquenal and nystatin and put me on a bart and bab2 formulas,. he said he wants me to immediately quit smoking and change my diet.
I've been smoke free for a month and a half after 15 years of smoking. I am also changing my diet slowly no sugar,grain,dairy,etc... taking it slow so I do not fail.
The doctor specifically stated he changed the meds like this and wanted the lifestyle changes because he wants to see what is keeping me so ill. He wants to see how much my lifestyle and food intolerances are playing a role in all this.
So my last appointment a few weeks ago I saw the pa, they sat down and said congratulations your healthy..I was extremely ill again could barely hold my head up. I couldn't believe my ears. And the pa thinks my symptoms are fibro...
I could barely talk, but I gave a puzzling look and said no, I'm still on my death bed and this is not fibro, this is lyme. This is why i've been coming here.
The pa said the doctor wouldn't have put you on herbals if your bacteria load was down. And now another one continuing to push the fibro diagnosis and pushed tons of meds I don't want..lyrica,nuvigil..
I don't understand, the docs and the pa are not communicating. Or not even reading each others notes? They would have known why the doctor did what he did.
It's not like I don't like the pa, I just feel the doc can do a better job and is not even mentioning the word fibro, he told me I have lyme and agreed I have been previously misdiagnosed all these years.
What do you do if you are very comfortable with the doc and not the pa which you see most of your visits.
Switching doctors is not an option, I spent a lot of money on this doctor. I am losing the will to live every day, my body and mind cannot take anymore.
Any thoughts on this would be appreciated. thanks
Posted by seibertneurolyme (Member # 6416) on :
First, if you have not done so then I would get a copy of the doc's notes from your last appointment with him to make sure that he is being straight with you.
Second, I would write a brief letter to the doc and probably fax it to him stating your concerns.
Does the doc have more than one PA? If not, then you are kind of stuck. Is there any way you can be seen only by the doctor and not by the PA?
My thoughts are that if you have seen little progress after 14 months of IV's then it could be the real problem is a coinfection such as bart or babs that is holding you back. Personally I am not sure that the herbals you are on are strong enough to really address the coinfection issues.
I know you don't want to hear it, but it seems like you may need to get yet a 3rd opinion.
The doctor/patient relationship is a very very important issue. If you can't communicate and work together then you could just be throwing your money away.
Congratulations on quitting smoking. That is quite an accomplishment.
Good luck.
Bea Seibert
Posted by Bitten in Bergen (Member # 34067) on :
I agree with Bea - I've already been through 2 well-regarded LLMDs who either made me worse, or didn't make any progress with me.
I believe it is because they were hyperfocused on the lyme and not on the coinfections (I have babesia & bartonella).
My husband (who also has lyme & company) is in the same boat.
Definitely follow up with your doctor, but as the Burrascano guidelines warn, if you don't treat the coinfections, you're not going to get better from lyme.
And then there's candida and parasites, too.
Posted by faithful777 (Member # 22872) on :
Ditto on all
Posted by Messa (Member # 38065) on :
Good grief! So sorry shannon. It sounds like the PA doesn't know what the dr is doing.
Wish you could just see the dr. I would try to somehow let the dr know that the PA says you are well. And then ask what the #*/#* is going on!
Posted by nonna05 (Member # 33557) on :
OK ..step back a sec......
I'm very much praying this is a communication "Grand Canyon".
I know you're sick as a dog.....Is it possible that notes got mixed up???
Actually I know it's possible,,,a previous LLMD sent me my records per my request.
Smack dab in the middle of the papers was someone else's file,,yep, the whole shah---bang
SOOOOOOOO. Lets hope there is an error OR better yet Lyme is out and Virals are left........
So call the phone line ask for copy of recorcds...without panicky or hyper!
Just say" I'd like a copy of my file please, labs ,tests, notes etc...for my records. please ...starting with most resent if you have fax machine....or can mention you'd pay for Fed Ex.
I'll go back and read more, I hopped(sp) on this after 3rd line.
Praying for you////sending LOVE>>>>>>>CAN YOU FEEL IT ???????? Posted by nonna05 (Member # 33557) on :
By the way..one doctor I know won't even start treatment at all unless you're not smoking. FYI , Nonna
Posted by Catgirl (Member # 31149) on :
Tell the doc what the pa said the next time you see him. He will straighten it out real quick. You can always ask to see the NP as well.
By the way, awesome you quit smoking! Burrascano said that patients will never get well if they smoke. I think smoking drives it deeper.
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