Having stomach issues, finally broke down and went to a PCP to get tested. I avoid all docs except my LLMD now from trauma (years of being told nothing was wrong, etc).
Well I got the tests I needed, BUT, this doctor is on a mission to prove I didn't have Lyme and that we need to get to the bottom of it.
I only said I had Lyme and was treated for it 2 yeas ago but I have the lingering symptoms I manage.
She went on and on about how it's controversial, there are a lot of bad doctors, and I need the blood test from her lab because it's accurate and trusted ( ). Ordered a babesia test too to prove me wrong ( I have duncanni and its treated, I'm sure she tested microti which will come up negative).
Wants to figured out why I was really sick. Just smiled and nodded because it's not worth the argument. I don't need this anymore. But I need a PCP for urgent care. I tried to tell her I'm happy with my care ( my LLMD takes no insurance do I need a PCP).
But these docs have a NEED to prove you wrong. I could tell she had the kid gloves on too, like I'm some kind of idiot.
This is in New England, the FRONT line of Lyme. I feel bad for her patients who get told nothing's wrong.
This is so wrong. I do t understand what's going on with doctors. They only look at research that reinforces their own bias. If you read all the research you would know nothing us set in stone.
I'm dreading the follow up where she proudly presents her Lyne antibody test as negative. I'm going to have to take a patient advocate in with me to protect myself.
I wouldnt tell her the name of my LLMD either. And that of course gets them mad.
You don't get it till you get it.
Posts: 133 | From North Shore | Registered: Sep 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Why ever in the world would you continue to hire her?
You are " dreading the follow up" -- why even have one?
Forget taking in a patient advocate. Find another PCP. Contact her office staff to mail you any records you need "just for your personal file" and just don't arrange another session where you pay her for the kind of work that is subpar for your needs.
Sounds like you are paying for her to harass you, belittle you and bully you. You have power. Just disengage.
Yes, this is wrong. Yes, it's traumatic. But the sooner you can come to terms with the fact it's her right to practice the way she wants . . .
the sooner you can take yourself out of the way of not just her ignorance but her bullying. You can claim back your power to recognize what she's trying to do and not get caught up in a mission of trying to prove something to her. It will never work. Just walk away with your dignity. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Connect with your local lyme support groups to find a reasonably minded PCP of integrity who can help you in the ways you need other than with lyme / TDB.
I understand you need a PCP but the selection must be done only after a thorough vetting. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This is Friday. Did you have blood drawn today for a lyme test? It would most likely be invalid for a proper test being drawn too late in the week.
If drawn today, you might be able to connect with the lab doing the test and cancel it so you (or your insurance) don't have to pay for it. Some are open on Saturdays but find out where it was being shipped to and call them ASAP.
Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
What Keebler said.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Show the video of microscopy? ... i tried to get new pcp and showed test results from south african lab snd she was like i will make copies..i tried to get vsl 3 satchles .
.insurance wont cover ....i may not go back for follow up .she was from colorado and knew bartonella was lyme..i tried to play it off as cat infection
also hospital group where id duc tefused to treat on false positive and 3 hospitals saidbit was autoimmune and nuero said eeg was not dirty enough for als ...wants me to be part of a feed back panel..hmmmm i may drag my happy self there and give them some what for
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
I need a PCP, and Lyme friendly ones near me don't exist. I told her I didn't need advice/help on Lyme. She's actually a good doctor, but doesn't believe in Lyme unless you test positive. I just need someone in town to see if I need referrals to neurologists, dermatologists, etc.
I'm on a state subsidized health plan so very limited network. I already have an LLMD that I pay out of pocket so I don't need a PCP that doesn't take insurance on top of that
. I just need someone so I don't end up in urgent care like I did for the UTI I got las dec. so urgent care needs. All other care is coordinated through my LLMD.
I know there are not Lyme friendly docs in my town, esp ones that take the free healthcare.
Posts: 133 | From North Shore | Registered: Sep 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
What Keebler said. Don't care if she's a "good doctor." If you are dreading going back, you are never going to feel comfortable with her.
Why can't you go to your LLMD as your PCP? That's what I do. That and urgent care.
There MUST be a better option.
Call and request all records incl recent tests.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- She can't be "a good doctor" to you for, oh, so many reasons.
1. Any PCP for someone with chronic lyme / TBD must at least have a basic understanding of all the body's organs & systems that can be affected by lyme / TBD with the why & how of all that.
Otherwise, they can't properly sort out possible connections for "whatever" reasons you would "need" her.
True, lyme / TBD can't account for all symptoms / conditions yet knowledge of such must be considered when evaluation MOST other issues.
2. She has created a "I'm Okay; You're Not" stance with you and
you have created a "really need you to understand and accept me" stance.
Understandably, of course. And I cannot tell you how many times, how many years I went through all that kind of dysfunctional hope. Many of us have. It can take too long to learn how to break free.
That kind of dynamic impedes a proper trust in a professional relationship.
3. Your LLMD sounds like they could be at risk if she is so insistent on finding out their name. She likely already has various ways to determine that, though, and could just call the pharmacy.
You MUST tell your PCP all the Rx you take, this is for their protection and ability to make decision for other treatments and
for your safety regarding potential interactions.
But, when you do that, it's very easy to then search you prescribed that for you. Still, it's likely very easy to for her to find out anyway, but she sounds like she is also setting up a case where it looks like you are being harmed or they have misdiagnosed.
Any differences in tests she runs or any problems you present can build a case, in her eyes.
Ideally, any PCP should also have the name of other doctors treating you, and phone so they can communicate. This is about your safety, again, ideally. This is important, yet, in the stance she has taken, not really possible to have a communication relationship with your LLMD.
If you sense this is a "vendetta" as you describe her tone, her words and actions, that sense of yours is trying to tell you something. Heed that gut feeling.
You should also alert your LLMD that she is trying to disprove their diagnosis of you by the tests just sent to the lab from her office. A "head's up" from you to LLMD is basic courtesy. -
[ 07-16-2016, 05:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- " . . . don't end up in urgent care like I did for the UTI . . . "
Now that you have information about the specifics of that experience, there is so much you can for yourself to also help prevent that.
Including but not limited to:
Taking D-Mannose at least twice a day ALWAYS & forever, really . . .
using a Bidet water cleansing type of bottle after each bathroom use, pat dry with chlorine-free TP . . .
Wear only 100% cotton panties, no synthetics. Same for any slacks or shorts, if they are tight against your body, the synthetic fibers cannot breathe and can create trouble for potential UTI.
Even for sleepwear when underwear is not on the scene, a cotton night shirt (rather than pajama pants) is best to get good air circulation.
and get some pH urine test strips to use at home (diet can help balance pH / acid issues . . .
make sure your glycemic load does not go up and down, keep it steady . . .
Avoid scents and bad ingredients in all your laundry and personal care products, etc.
Study what some UTI discussion groups have found that help.
- check ingredient safety on all kinds of household, kitchen or personal care products
Look out for: methyllisothiazolinone - it's even in some "natural" soaps and it should be avoided in any personal care products, even if they are not used on the uro-genital region, it can still cause irritation body wise even if just in hand soap. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Still, be sure to ask at ALL the area lyme support groups for name of PCPs who are working with others in that group.
Also call all state support groups that surround your location who might have additional detail.
A new PCP can still address that you are "Having stomach issues" yet, again, many things we can do for ourselves there, too.
Be sure your LLMD knows as many Rx can irritate stomach lining. Lyme itself, is a huge stomach lining irritant.
Being free of gluten, dairy & corn are basics and help so many with stomach issues.
you might need to change the kind of probiotics you take - some have seen success with a switch
Do get the results of that h.Pylori test when it comes back. If positive, a new PCP recommended by others with lyme or your LLMD should work better and they would need to know all the Rx you take before prescribing anything else.
If not h.Pylori, in addition to a gluten free, etc. diet, there are still other things we can do for ourselves to help. Some of those:
slippery elm bark powder
DGL
pH / acid balance, etc.
Consider oxalate overload in diet
Avoid aspirin (even coated baby aspirin can bleed through the stomach), avoid NSAIDS, and all kinds of sparkling or fizzy water as that kind of acid in the bubbles can eat through stomach lining (sigh!)
Consider treating lyme / TBD with a rife machine rather than with Rx. -
[ 07-16-2016, 06:13 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Neko
I've been in your shoes. Sometimes we have to do what we have to do. You aren't planning on marrying this doctor, or even inviting her over for Thanksgiving dinner, so use her in any way you can to get what you need.
If/when something else comes along, you can make a move at that time.
I've been in your shoes. Sometimes we have to do what we have to do. You aren't planning on marrying this doctor, or even inviting her over for Thanksgiving dinner, so use her in any way you can to get what you need.
If/when something else comes along, you can make a move at that time.
Just my opinion....
Well first I have to make it through my second appt without walking out. My friend in town just left her PCP crying cause they told her that us Lyme patients single handily cause antibiotic resistance strains of bacteria.
No good docs near me, which is why I drive about 5 hours to see my LLMD.
I'm jealous of people who find PCPS who get it. Everyone near me with Lyme travels great distances and pays cash to get treated.
I just stopped going to all other doctors, but I need referrals to specialists now so I have no choice. My insurance demands PCP coordinating care. Before my diagnosis I had a PPO plan so I choose to see any specialist I wanted.
My h.pylori test is negative, so I do t know what to do about my stomach. I'm so overwhelmed I don't know how to even try a bland diet or try to figure out if it's food issues. Dairy seems ok. I'm gluten free but I think for no reason, I've never had gluten issues.
Posts: 133 | From North Shore | Registered: Sep 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Please tell your friend to print this out, send it to that pig faced doctor and tell her to sit on it.
I wrote it specifically to refute that stupid notion, so please feel free to use it.
You said.. "My insurance demands PCP coordinating care."
Ok. Tell them they must find you someone because you can't- no one wants you when you have CHRONIC Lyme.
And whoever they pick must follow the ONLY Lyme guidelines currently active that address your condition, which is he 2014 ILADS guidelines.
As for your tummy- I have no clue what's wrong with it, but a trial of good old pepto bismo might help. It contains "bismuth" known to kill spirochetes.
Seems so simple in today's modern world, but has been successful for many. Be sure to drink full glasses of water with it as the instructions say. And since I am not a doctor I must advise you to check with your doc first.
Hope something here helps, and you are a happy dappy do real soon!
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In all fairness, the doctor's face is likely adequately pleasing. Yet, even if not, that is no "never mind" to anyone. Personal insults create a dangerous demeanor in the world.
She likely does not know better (yet) and to think of her as "a pig face" - to even put thought or voice to that - will undermine your health objectives and it muddles the picture.
There are good ways to communicate - or stay away. Keeping our dignity in how we communicate while allowing others to keep theirs matters greatly.
Use your facts. She is not open to seeing the reality of lyme and that is not serving your medical needs. If the two of you can have a conversation about that, great. If you can share a good article or two, great. Still, she is not likely going to . . . phone rang -- and now no way to finish that thought.
Use your facts and logic in conversation and choices.
As for emotion, well, yeah, that is an enormous consideration and understandably so. Still, try to keep it out of communication and don't put yourself in a position where searching for the "real" facts and logic aren't "honored". -
[ 07-25-2016, 03:04 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
- You say that "My insurance demands PCP coordinating care."
If you are paying for your LLMD on your own, they don't even need to know about this. They don't need to know if you just don't go to a PCP (at least for now).
Learn how to do as much for yourself as you can - "build" your "emergency kit" of sorts to be sure all bases are covered while searching for good PCP for you. Talk to all the lyme support groups around. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Keebler: - You say that "My insurance demands PCP coordinating care."
If you are paying for your LLMD on your own, they don't even need to know about this. They don't need to know if you just don't go to a PCP (at least for now).
Learn how to do as much for yourself as you can - "build" your "emergency kit" of sorts to be sure all bases are covered while searching for good PCP for you. Talk to all the lyme support groups around. -
My LLMD is not a PCP, and is 5 hours away. She yes, I technically need a PCP. I'm not going to depend on her for my Lyme management. Basically, if I get strep throat or an infection, I need somewhere to go. If my stomach issues get bad, I need someone to refer me to a gastroenterlogist. My LLMD cannot do so, though she would be interested in my test results if I do get an endoscope.
Last time I got sick, I had to go to urgent care and got a hefty bill. With a PCP, I would just call and she would see me. My plan was not to get into it with her about Lyme.
The problem was, I mentioned I had Lyme in the past and she fixated on that. I said nothing about wanting her to treat me for Lyme.
And yes, technically, a PCP should know about all our health issues and coordinate care with other doctors and even ones own LLMD. but few of us have that luxury, it's why we pay cash for an LLMD in th first place.
I wish my health insurance plan allowed me to refer myself out to specialists, but I can't. Thanks to HMO style care, I have to get permission from a PCP, and it's difficult enough to find one who accepts new patients let alone is educated on Lyme.
I'm frustrated but not much I can do.
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). Ordered a babesia test too to prove me wrong ( I have duncanni and its treated, I'm sure she tested microti which will come up negative).
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