posted
Saw my NEW PCP today; he's treated lyme patients and cured them!
My pcp of 28 yrs. Retired 8-1-07 so had to find someone knew..yuk. i selected a woman dr. Who treats other lyme patients but wasn't totally satisfied.
It become very evident when taking hubby to her for a pre-surgical physical for his cataracht surgery. We waited 1.5 hours in cubbyhole room, and she was nowhere to be found. Her rn/staff had NO idea where she was, etc. when she came in, she did NOT APOLOGIZE OR Acknowledge her being late giving him 4 min. Sugery exam! We were both disgusted.
So we got 1 more new dr. 2 wks. Ago so made appt. and went to day for 1st time or my 30-45 minute session. He was 30ish, VERY THOROUGH, and would not look over my 1 page of typed items why I WAS HERE TODAY. I worked those items in since they required blood tests.
Then asked if he was familiar with chronic lyme disease. YES, I HAVE TREATED THEM AND THEY WERE CURED IN 1 MONTH!! I told him, they were just bitten and had rashes then!
Told him i've had chronicc lyme 38 yrs; 34 yrs. Misdiagnosed, later i was bitten by tick off folkk's live xmas tree where he started questioning me thoroughly and argued a little!
I asked him if he would take me on as his patient, and he as my PCP; yes, except for lyme issues; continue seeing out of state LLMD! He questioned me about things and i made sure i didn't give out name, but gave location.
He's going to add 2 more meds but not for one month!
Diabetes metforim for insulin and to REDUCE MY WEIGHT ISSUES!
Cholesterol/triglycerides since they increase heart problems plus my diabetes causes that too since dad had diabetes 2 and died from congestive heart failure and kidney failure.
I said my lyme had caused heart problems; heart block?? Said i didn't know what heart block was;; you'd be dead if you had that! Stupid question huh! Said i had really high heart CRP.
We had receptionist make appts. ENT for my obstruction in right nostrel to help me breath and then utilize CPAP machine.
He couldn't believe i'd had 2 nose septoplasties on SAME NOSTEL causing obstruction for nosebleeds that wouldnt stop.
Allergist for my gluten, casein, and multiple chemical sensitivity issues.
Had i been to dietician; yes, last week.
Asked for HELP ON SLEEPING! He said my depression and incontinence pills were the worst causing dry mouth.
He just couldn't get it cpap FULL mask would not help me; i plug up every night and can't breath out of my nose. How long ago had i had sleep study ..3 yrs. Ago showing NO DELTA 4 SLEEP !!
I'm to come back in 1 month for lots of lab tests for diabetes, thyroid, complete panel, ... think there were 5 things chosen by him.
I will be interested to read HIS MEDICAL DICTATION FROM TODAY ON ME!
My hair is bristling and my teeth curling at the thought of having to start up with a new PCP. You are one brave Momma!
It's great that this young man is very thorough in going over your meds, etc.
As far as the Lyme goes, it sounds like you may be educating him...IF he's a life-long learner dedicated to listening to ideas he hasn't been exposed to!
You hang in there and here are some air-hugs-kisses Best of luck with med changes and PCP changes!
Thinking of you,
wiserforit
Posts: 508 | From Banks of the Hudson | Registered: Jul 2006
| IP: Logged |
That's funny, I just went to my neurologist, and heard a similar thing. It seems these docs are similar in that they will do what they can within a certain political parameter but all lyme issues are left to the specialist!
And when I got his notes, my oh my, I could believe what was missing or incorrect!
Hope you find some relief and this doc can help you.
I never did understand how my heart felt swollen and had palpitations and the cardiologist found not a thing wrong with the heart.
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YiKES and DOUBLE YIKES BETTYG!!!!!
Hope it works out- SCARY!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
"Then asked if he was familiar with chronic lyme disease. YES, I HAVE TREATED THEM AND THEY WERE CURED IN 1 MONTH!! I told him, they were just bitten and had rashes then!"
What was his reply? Do you think he sort of gets it??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Sorry you had to go through this. so annoying.
Posts: 1761 | From USA | Registered: May 2006
| IP: Logged |
posted
Sorry you have to do this. I would be so upset if I had to find a new doctor. My internist here doesn't really know anything about Lyme but she at least listens and is ok with my Lyme treatment from LLMD.
It took almost 20 years to find someone here who wasn't rude or uncaring. I would hate to have to start all over again.
It can be scary and frustrating. I hope it goes well for you.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
bettyg
Unregistered
posted
THANK YOU TO:
Tori, turtle, tutu, mojo, keebler, and kathy,
Tori, thanks for my air hugs ;; gosh that felt good! yes, this brave momma had no choice but to start over, but this time i know i have chronic LYME disease. so i will question/research many things to make sure they are to MY ADVANTAGE!
turtle, glad you are happy with your new neurologist, and he had wonderfully, ACCURATE medical dictation notes for you! what a blessing!
i'm still trying to get my 9-13-07 ER records straightened out for how i fell in the HOSPITAL with the false comment they made there, "she tripped over her shoes and lost her balance"! vs. my sandle stuck to the tile floor causing my foot to come out of it, causing me to fall hitting my head against pillar.
tutu, since we were rather RUSHING going from 1 thing to another, i do NOT remember if he answered or not. think he "steered" to another topic getting more health issues out on the table. does he get it? don't know at this point since i'm a large load of health problems for him to handle, BUT I WILL PURSUE THIS NEXT APPT. IN 1 MONTH!
i'll see how receptive he is to getting lyme info to learn from to help ME/OTHER LYMIES!
mojo; thx so much;; hard to start over!
keebler, do you feel better now after your long rant of drs., dentists, etc? yes, i understand your frustrations, etc. dentist sounds/lights, etc. drive me up a wall too for my EXTREME SENSITIVITIES to all of them.
i also do NOT feel i was treated badly by him! i see we are going to have many EDUCATIONAL TALKS IN FUTURE! him teaching ME; me teaching HIM! i think you all know me well enough by now that i'm not taking crap from anyone and will SPEAK UP when necessary.
i was telling him that STEROIDS WERE A NO NO FOR LYME; YES, he knew that and said specifically why! i was impressed on that statement!!
kathy, thanks so much for your lovely words! i've had live 38 yrs. this xmas from that ornery tick in my folks' live xmas tree; 34 years MISDIAGNOSED by 40-50 drs/specialists! yes, this is very difficult! especially to get an appt.!
the 2 new drs. who replaced mine/another dr. who went elsewhere, was taking 3-4 MONTHS to get into see them. i told this to new dr. yesterday, and said i could NOT WAIT TO DO THIS; he totally agreed with my health issues!
so now i'm starting to work on my WEIGHT and cutting down eating all thru the night time when you normal folks are sleeping!
going to an exercise/balance program hospital is having today.
i'm lucky! our communicity started "primetime for seniors 50 and over of health isue programs"; so there is normally 1 or 2 per week, and we can suggest the subjects we wish discussed!
IP: Logged |
daise
Unregistered
posted
BettyG,
Finding a PCP with rational Lyme knowledge is rare. It seems like he could listen better, yet, at least he's listening some.
Atleast he didn't dismiss you outright for having Lyme. I've found that overwhelmingly, PCP's do dismiss outright.
I have a pretty good PCP, now. But mainly I rely on my LLMD visits.
I'm lucky he's not hundreds of miles away. The drive takes a while, but it's doable.
Keebler,
Well said. I've gone through PCP's like rainwater through the gutter!
You've given up on docs. However, I want to encourage you to see an oral surgeon. I did and the bad infection in my mouth was wiped out. That helped my Lyme recovery!
Maybe try to figure-out a way to handle an appointment. Perhaps type a letter listing your needs and concerns. Ask the oral surgeon for help to accomodate you, because afterall, you are disabled.
Maybe there is a time during the week when not many are in the office.
Gas puts you "out" and that could help with sound sensitivity.
Your idea of an oral surgeon's office could be a model for the future. Hey!
Some years ago nearly every tooth with a mercury amalgam popped out of my head in two weeks time. THE PAIN! I didn't do medications then, and I didn't even know about Ibuprofen reducing swelling, until the end. That helped! Finally. (I was ignorant. But I am gettin' savvy.)
I concluded that I must have a sensitivity to mercury because my body was screaming Out! Mercury teeth--get out of my body! And that I would be a pariah if this knowledge got out to conventional doctors.
I had no money for a dentist and no insurance, and the VA refused me dental care--and I'm a veteran. After years, the teeth without fillings became lose, due to no neighboring teeth to hold them in place.
Of course! Oh my.
And the infection. Did I mention the infection? Gross. But I had insurance now and the opportunity to have the teeth I had left, removed--and to get rid of the grossness in one fell swoop.
Grossness had not vanished with oral sulfa-whatever-dizoale. An antibiotic.
I knew getting rid of the infection had to help whatever it was that had severely afflicted me. (A year before I had Bell's palsy, etc. Lyme signs and symptoms all at once. I didn't yet know it was Lyme.)
I had my teeth removed for dentures. But I was a little scared of oral surgery.
The oral surgeon looked at me sideways when I said "mercury sensitivity." Oh well. He turned out to be nice about it. Rather, he humored me.
My oral surgeon put me "out" so fast with gas that I was dumb to the world, right off.
He asked me to look at a big picture of a hot air ballon. He told me to tell him when it moved. In seconds, I said, "Ttttthhhhheee whhhoooooooolllee--came out as a whistle--piccccccccccttttttturrrrre issssssth mooooooooooovvvvviiinnnggg ...."
And I knew no more.
Woke up. "When do you start?"
"We're done! You did real well."
"Ya? I have chronic exhaustion so I guess it didn't take much gas. Is the infection ... "
"Gone. Doesn't exist anymore."
Then it was apparent that actually it was a new oral surgeon who had done the surgery. She was in-training or whatever, because both of them were present. I had two oral surgeons. Greatness.
I sat down in another room: the recovery room. Very quiet. Way overstuffed chairs. Then my "ride" (you can't drive) took me home, still in a dreamlike state. I don't much remember the ride home, I was so dreamy. What had I been scared of?
Maybe you could call and ask the oral surgeon or his office manager if they give gas for oral Ulcers. See what they say.
But seizures--with gas? I have no idea. Maybe ask about that. See what they say. What would an Internet search pull-up?
Or ask the CFS-smart dentist.
Laughing gas: All doc appointments everywhere--even the pharmacist.
In fact, it'd be a great way for a new doc to fill up the schedule with new patients. But I wouldn't go with anything less than a raspberry pedicure.
You were talking about hospitals and docs and such ... with the very mention of Lyme. Can't they get more creative than that? I mean ... these coast to coast stories are like living in the Twilight Zone. I have a list of stuff ...
As for rides, you could check your insurance booklet--try under "Transportation" or "SafeRide." My old insurance was on the SafeRide program. It's nationwide, with some companies, especially Medicaid insurance.
But not all companies have something like this.
I took SafeRide to several physical therapy sessions when I didn't trust myself to drive(I was herxing for weeks.) I had a wonderful physical therapist specializing in nuero. Lucky me.
Request that there be no air freshener, perfume, cranky engine or grinding stick--and no honking driver at your wheel. Why not? Maybe also give a list to the driver of what drives you up a wall.
I hope you wouldn't have to be driven through a noisy part of town.
One thing, does the oral surgeon/dentist require a companion who can take notes for you, after surgery?
Where there is a will there is a way. I drive people nuts.
posted
UPDATE 11-16-07 ..... ALLERGIST DR. SEEN TODAY!
saw a new allergist today, and was in his office for 2 hours!
i was giving him health history when i said i had chronic lyme disease. when were you dx? correctly 6-04; misdiagnosed 34 yrs.
he said, lyme is quite controverial! i read in JOURNL lately the newest lyme article about long-term abx. yes, the controversy won't be over before i retre, and ihe looked youngish 50!
he had RN perform all those allergy tests on me again, had me inhale/exhale of this stimuland, which i felt was of NO GOOD.
apparently nothing showed up inn 30+ back tests, and 12++ arm tests!
gave me rx for breathing stuff; will have to look this up and read directions first. see him again in 1 month.
i was impressed and told him that as he walked out his knowing bout lyme controversy!
he asked me later what i did since not working; i'm a LYME ACTIVIST!
IP: Logged |
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi Betty,
I'm sorry that you're going through this.
I'm curious to know whether the PCP is as much like the GP as I think, here in Canada.
The GP basically refers to specialists, and takes care of matters that don't require a specialist.
I've had to find a new GP lately, and I'm going through what sounds like the same thing as you, Betty.
What I've concluded about the whole thing:
Do not expect, in fact make clear Lyme diagnosis is an issue that is not for debate. If the GP will not accept this, keep looking for one who will.
We need here to have prescribing physicians who are in the same province.
This is what I've worked out so far:
1. I see an LLMD in the US. What he suggests / we work out is what goes.
2. I have a GP (like your PCP?) in the same province who is LLMD, but less experienced than Dr. S. He prescribes.
3. I have a GP here who does my routine blood tests, and general exams, and refers to specialists, if I need them, for issues OTHER than Lyme.
What is interesting is that no matter how clear I am with these non LLMD doctors that I am not interested in any discussion on Lyme, they feel entitled to weigh in.
I recently got a report from a neuro who I'd seen in order to monitor my neuro activity. He suggested in his report that the fact that I'm getting better with abx does not conclude in his mind that I have Lyme.
I'd like to know who asked him? I'm seeing one of the top Lyme specialists in the world, and this neuro, whose specialisation is epilepsy, not Lyme, is questioning my diagnosis. Did I ask him? Whose body is this? If I go to the store, and I pay for advice on my computer, and I get advice on my car problems, what is going on?
Honestly, one GP I interviewed, told me that they have a responsibility to OUR UNIVERSAL HEALTH CARE INSURANCE (this is Michael Moore's CANADA, folks) when it comes to something like Lyme, which can cost a lot to treat. Duh hello? Is this why these specialists and GPs are weighing in? They sure aren't doing it because I'm requesting it.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
| IP: Logged |
bettyg
Unregistered
posted
canbravelyme,
YES, your GPs are like our PCPs in USA! they will take care of immediate problems, but specialists dealing with SPECIFIC problems will handle the other things!
yes, i would have like to pursue more as to why he inquired, etc.. but didn't. i was just happy he knew a LOT about lyme controversy and had brian fallon's ILADS long-term abx in their ""journal"!
IP: Logged |
quote:Originally posted by canbravelyme: Honestly, one GP I interviewed, told me that they have a responsibility to OUR UNIVERSAL HEALTH CARE INSURANCE (this is Michael Moore's CANADA, folks) when it comes to something like Lyme, which can cost a lot to treat. Duh hello? Is this why these specialists and GPs are weighing in? They sure aren't doing it because I'm requesting it.
That's exactly what scares me about a national health care plan here. Maybe it will be good to take better care of our children, but I can bet lots of money it won't help anyone with a controversial illness like ours.
betty......This dr probably knows a lot less than he says he knows!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
bettyg
Unregistered
posted
tutu, you may be right; won't find out easily ... i see him again in 1 month.
believe i forgot to post this above, as he left room, he looked at my back and shoulders saying nothing acted up from ALLERGY TESTING DONE inncluding different foods!!!
so makes me wonder about my casein 1st dx and gluten, althoght with gluten, i'm in bathroom little while later so gluten is definitely involved!
IP: Logged |
bettyg
Unregistered
posted
texassmom, thanks so much for your input as well. yes, i do know most of what you discussed above.
it's amazing, each dr. thinks THEY are rght; not the other guy!
IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've been told repeatedly on here to be leary of anyone, doctor or whoever, who says they can cure lyme, no matter the time.
just my opinion.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
![[hi]](graemlins/hi.gif)
![[kiss]](graemlins/kissing.gif)
Best of luck with med changes and PCP changes!
![[bow]](graemlins/bow.gif)
![[spinning smile]](graemlins/spinsmile.gif)
![[Big Grin]](biggrin.gif)
![[group hug]](graemlins/grouphug.gif)
![[confused]](graemlins/confused.gif)
![[Mad]](mad.gif)
Printer-friendly view of this topic