Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I am so puzzled by the plain blank stares I get from regular doctors and specialists.
I went to see my regular doctor ( which is how I found out I owe them ten thousand dollars) and showed her my PCR test for Lyme and Ehrlichia.
I was there actually because she wanted to talk me into taking blood pressure meds again which I don't want to do because no one can explain to me exactly how they work. Or actually what *else* they do besides what they're supposed to do.
Anyway I showed her this lab report and she suggested that I go to another infectious disease doctor for a second opinion since perhaps the test I was showing her was not valid.
It's DNA. If you amplify a certain organism with PCR to blow it up and see its DNA, you're not going to see a different organism. You'll see the one that the primers were looking to amplify. That's how you tell one strain of e.coli from another.
We couldn't do this before we had PCR because they look the same under a microscope. I know this because I used to work in a DNA lab. The whole big deal about PCR is that you can identify really small things by reading their genetics. PCR doesn't make too many mistakes.
When I went in there I had bp of 170/102, a heart rate of 90, and a temperature of 99.8.
She's trying to give me the blood pressure pills. I was like sure i'll take them ( maybe, not keen on it) but the reason I have high blood pressure is BECAUSE I'M SICK.
More blank stares. Just blank. Like it's the most preposterous thing in the world to suggest that when person has elevated blood pressure, heart rate and temperature they have a bacterial infection.
It's almost like the spirochetes have somehow figured out a way to hypnotize doctors into not seeing them.
(breaking up the post for easier reading for many here)
posted
Have you tried high quality magnesium for the BP?
Beta Blockers are not that good for us, so I would avoid those if you can. However, your BP is too high. You don't need a stroke to add to your woes.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It's ridiculous... They do not understand the basics...
I wouldn't expect them to support you. You gotta change drs.
I gave up on the majority of them (non lyme experts).
As for blood pressure, I had that during lyme. I controlled it rather easily with Chinese herbs... I can't remember which, it was a tea, simply, of a couple of herbs, and that really lowered my blood pressure.
Since lyme is gone, for me, I have no more high blood pressure.
I think binders help (chlorella, MSM etc). My BP increased during herxes and binders helped me too.
I'm so sorry to hear your story. It's so sad, we are so sick and still have to spend energy trying to convince these dumb drs....
In my mind, I gave up on them.
Even if I convince them I am ill with lyme, what can they offer as treatment??
I don't think they will be helpful AT ALL. What kind of knowledge and help can they offer if they do not even understand PCR exams??
They are more like bolders in the middle of the way. I just swept them off my way.
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
High blood pressure is hard on the kidneys too. If you don't yet have a good magnesium, Epsom salt baths can work quickly. Three or four cups of salt to a tub of water, soak full body at least 12 minutes.
posted
Ha! It is so true. The vast majority of doctors just don't get it. I am very careful of which ones I share my lyme story with.
Posts: 142 | From Midwest | Registered: Sep 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Blood pressure, I know I know. I just bought a natural blood pressure herbal combo with hawthorne and garlic in it.
I have three different kinds of bp meds here and I gave up on all three of them. Benicar - gives me myalgia, I ache all over. Lisinopril - causes angioedema, I can never tell what I'm allergic to and my throat is swollen anyway. Norvasc -- bad headaches and swelling.
Gotta buy more Epsom,thanks for reminding me.
Posts: 2057 | From Florida | Registered: Feb 2015
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I'm on diovan and nadolol. I have ballooning bp which means it goes freaking high at unexplained times.
been to infec drs. they are beyond worthless. I can't describe my contempt for them.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
My hubby has been using Cardio VH because of high bp. His bp is good now.
Posts: 2247 | From USA | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
What is it with ID docs? I read all these case studies...oh,we found oroya fever, we found leptospirosis, we found LYME, we found babesia.
So where are these people when you need them?
It's like the studies are being written by some PR department to cover the fact that ID docs do absolutely nothing all day except refuse to be even slightly interested in infectious diseases.
Posts: 2057 | From Florida | Registered: Feb 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks MannaMe. Just looked up Cardio VH -- it's about the same as what I bought. Here's hoping.
Posts: 2057 | From Florida | Registered: Feb 2015
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by Jordana: I am so puzzled by the plain blank stares I get from regular doctors and specialists.
Kayda posts, Hi, Just wondering if I missed the interoffice memo sent to every single medical dr. in the country that Lyme disease doesn't exist and if a patient comes to you for help, you are supposed to tell them Lyme is a myth and send them to a psychiatrist!
My reply, posted February 27, 2007
Actually, some doctors did get a memo like that.
A while back, I was reading some info about insurance companies, and found that some companies will tell a group of physicians that if they do not diagnose and treat Lyme Disease, that they will each receive a hefty bonus for the year.
It can range as high as ten to thirty thousand.
This puts alot of pressure on a doc. If they diagnose and treat a case of Lyme, all the other docs in the group will also lose that bonus.
If this is true, it would explain some of the contortions doctors go through to deny Lyme in a patient.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
A, they're not taught, and B, they're told not to discuss Lyme. They're not stupid - it's political.
Interesting, Carol, that there may be a financial incentive to deny Lyme/co's.
I enjoy doing interventions in doctor offices. I made an appt with an ID doc once and had Lyme brochures ready under my coat.
When he started to tell me there was hardly any Lyme in CA, he found himself suddenly holding 10 different Lyme brochures, several of which said Lyme in California, including one in Spanish!
He looked at me, then said the appt was over, he walked out, then I walked out and educated the staff, who could not walk out!
And I make it personal, as in you, your family, your pets, your friends, your acquaintances, anyone could get these infections. Wouldn't you want to know how to protect yourself? Then I follow up with some local infection report data. That usually gets them.
I say educate.
Posts: 13116 | From San Francisco | Registered: May 2006
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
They don't want to give prescriptions for antibiotics.
Or pain meds.
Ask 'them' for an antidepressant or antipsychotic drug, no prob.
If you tell them you don't want treatment from them, you already have a specialist, relief washes over and the guard gate goes down.
Gotta pay $$$ for specialists. Lyme disease sucks.
But you CAN get better/ have improvements. Part of it is not getting sucked down into just how bad Lyme disease actually does suck.
((sorry))
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Jordana
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posted
I don't understand though -- just reading that these things are "reportable illnesses" and should be treated this and that way. How can anything be reported if these people refuse to look for it?
It's just baffling to me.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Ya i went to get new primary and asked for probiotics and showed her tests for bartonella and toxo and she said oh dear thats lyme ...i was suprised she even knew i tried to play it of as cat diseases. .
asked for a script for vsl (insurance wont cover) and asked for some monitoring blood work and she said i hope you have a good id duc and arent they monitoring. .? I explained that they would not treat me and had to seek help and testing elsewere
..she was from colorado and was nice enough ..billed insueance 300 $and said good luck the best was a er nurse actually gave me rocephin when i went in for a port snafu.
.when they see the cancer port they know you aint fuggin around .i got to show him video of the spirochete in microscope and told him the lucrative nature if he were to become a llmd
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by Carol in PA:
quote:Originally posted by Jordana: I am so puzzled by the plain blank stares I get from regular doctors and specialists.
Kayda posts, Hi, Just wondering if I missed the interoffice memo sent to every single medical dr. in the country that Lyme disease doesn't exist and if a patient comes to you for help, you are supposed to tell them Lyme is a myth and send them to a psychiatrist!
My reply, posted February 27, 2007
Actually, some doctors did get a memo like that.
A while back, I was reading some info about insurance companies, and found that some companies will tell a group of physicians that if they do not diagnose and treat Lyme Disease, that they will each receive a hefty bonus for the year.
It can range as high as ten to thirty thousand.
This puts alot of pressure on a doc. If they diagnose and treat a case of Lyme, all the other docs in the group will also lose that bonus.
If this is true, it would explain some of the contortions doctors go through to deny Lyme in a patient.
Wow, this explains a lot! Such greed!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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bluelyme
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Member # 47170
posted
Wow thanks cat...just wow
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The intent of detail below is not just to understand what force just hit us, so to speak but how to avoid repeats.
It's not about expressing anger (I'm not good with that and tend to just try to figure out how to jump the fence and move along). It's about just becoming informed and then knowing to avoid bad doctors and find good ones.
Some explanations here about how most regular doctors (and even "regular" specialists) think of those they declare only in need of a psychiatrist instead of comprehensive medical assessment & care.
Many reading this site have likely been declared a "difficult patient" somewhere along the line, likely very early on.
We need to understand their world. For as much as we want them to understand ours, we also need to understand theirs - and then we can better know if they are capable to tackle the kinds of medical issues we face, or not.
But, most importantly, if we can do our research on the doctor BEFORE going to see them, then we will wind up in fewer doctors' offices where we are not only not welcome but seen as "bizarre" or "odd" or just "wack-o".
We must, must, learn to find the red flags to avoid such doctors who are up to the task, either due to lack of education about tick-borne disease or due to their attitude & judgment.
We must do our homework first and not try to make them understand us. Better to avoid being in such a position in the first place.
I know this "requirement" I impose by suggesting to see only lyme literate or "lyme friendly" doctors is not practical but until such time as more are educated, it's up to us to avoid putting ourselves in a position to be abused by their incompetence or judgment.
That will leave many to try to figure out how to best tend to themselves. Not ideal, I know. But better than abuse.
[ 10-22-2017, 09:09 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Here in Europe, the fees physicians receive is not astronomical like in the USA (in general).
Rarely, you will pay 600 euros (or dollars) for one visit to a specialist(even if it happens).
I was shocked to know you guys pay more than 1,000 dollars for one visit to the dr. without counting the exam costs, which feels like absurd.
Here, the reason drs refuse to diagnose people with lyme is not ONLY for political and money reasons. I don't see it like that.
They refuse to treat you, mostly because they do not know. It's mostly ignorance. And lack of interest on chronic disease treatments (too hard to treat, too troublesome).
LLMDs will not get astronomical amounts of money in general... Not in the proportions you guys have to pay.
Besides, some of the treatments are covered by the basic health insurance (during lyme, I paid only 10% of medical costs).
I had though to pay extra for my naturopathic dr, which was about 100 dollars an hour.
Of course, if I decided to go to Paracelsius clinic in Switzerland, I think fees would go closer to what you guys pay in the USA for most LLMDs.
Drs. here are as blind as your drs there, but the ones called LLMDs do not immediately charge clients astronomic fees.
Here, I know many people complaining to pay 100 dollars an hour for any treatment, when it is not covered by the insurance...
It doesn't mean the situation for lyme sufferers here is better than the US. But medical fees are very different...
during my worst years of lyme treatment, I spent about 700 dollars a month with everything (machines, supplements, medicine, medical fees).
My daughter less. I felt it was a lot, but when I see what you guys in the US spend, I feel so sorry for the ones who are not able to pay...
Posts: 6199 | From Brussels | Registered: Oct 2007
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
The fees is the United States are different than most of Europe or Canada (now, I am NOT speaking about Lyme specialists)
because the US medical system turned into a
For Profit Business.
Middle Men (Insurance Companies)
We can argue until the roosters crow.
If you live in America, and you suspect/have Lyme Disease, that has persisted longer than you pulling that tick off,
please, find a Lyme Literate Medical Doctor. Concentrate on getting yourself better.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
It's really sad that only some can afford to consult these specialists.
Fortunately, Buhner wrote all those books on lyme, and you can treat yourself partially, spending little...
The good thing is that internet exists, and many people can try to find some solutions by themselves too.
But even if one can afford treatments (like most middle class Europeans can, because costs are not always astronomical), it doesn't mean they will find a solution for lyme or chronic illnesses.
I found good specialists, but I feel like I did about 70-80% of the 'job' by myself. They helped me about 20-30%.
Like changing food habits, protecting against EMRs, learning about herbs and homeopathics on my own, etc.
Not only money is a barrier to healing, in that sense...
I do agree that finding LLMDs can be a good starting point. But they are not a warranty to take you off hell either.
In the end, the most has to be done by the patient, in my opinion.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I have seen many, many doctors over the past few years.
It seems lthe slander of Lyme patients is never ending.
Case in point:
2 weeks ago I recieved a letter from a previous medical provider that I saw last year. It seems he is moving his practice to greener pastures. Dubai, of all places.
The letter stated to contact his office regarding my medical records. So I did. I requested they be sent to me.
Wow, talk about heartless. Read and weep :
(exact words) 'Patient has a rather bizarre effect. In an office setting, patient contorts her body into awkward positions demonstrating in a dramatic fashion a rather mild disability.
"Patient denys drinking heavily despite being a professional bartender."
"It is my opinion that there is an element of dramatization and symptom magnification."
Are you kidding me ????????????????????????????????
Last year I was dying of late-stage undiagnosised, untreated, Neuro Lyme and Company.
My disease was and is REAL, you piece of s###.
THIS HAS GOT TO STOP !!!
Posts: 2977 | From Florida | Registered: Nov 2016
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posted
I think it's political - I think they're being told not to diagnose. Insurance companies don't want to pay for all the care is one reason. Maybe they're giving doctors a bonus not to diagnose. The second reason is the government may have created it - read the book Lab 257.
I had the same kind of stuff in my records when I asked to pick them up by hand to deliver to another doctor. The phrase back then was "undetermined amount of functional overlay," meaning I was getting something out of saying I was disabled.
I was so mad, I went to the records office and asked that the statements be retracted. When they said that couldn't be done, I then said I wanted to make a statement to be put in my records, and that's what I did.
I also told them I would be telling every future office at that institution what I had discovered and that it was a wrong judgement.
Not sure if you can still get some Lyme brochures from somewhere - maybe at www.lymediseaseassociation.org? I think it's a great idea to bring Lyme/co brochures to the medical appt and hand them to the doctor. Better yet if you can get a discussion going about the nature of the illnesses.
It's amazing that this kind of doctor behavior is still going on. I went through it 30 years ago! We now have lots of Lyme sites and books and films, etc - we got info out now!
Posts: 13116 | From San Francisco | Registered: May 2006
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I think I'm more mad that he slandered my profession !
Notice he didn't say the patient denies alcohol use despite being a professional bartender. ( which is bad enough itself as the next provider will 'assume' that this is the case)
He states HEAVY alcohol use which could lead to the assumption that this is the cause of my medical condition.
Doctor s are taught to never assume anything with their patients. Use your training and education, do your job, do the work. Maybe this doctor was sick the day this was taught ?
I m sorry but I have to find humor in this, as that is the way I deal with imbeciles.
It reminds me of a Seinfeld episode called "The Jimmy". The episode stars Bryan Cranston as Dr Tim Whatley, who is Jerry s dentist.
Dr Tim Whatley converted to Judaism a few days earlier and assumes, since he is now Jewish, that he is allowed to start telling Jerry, Jewish jokes. But Jerry is offended, not as a Jew, but as a professional comedian.
Posts: 2977 | From Florida | Registered: Nov 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Hey, Bonnie! I never thought about whether or not bartenders are alcoholics more than other professions.
But, because of your post, I decided to Google it. Here is what I got:
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
This is nothing new to me TF as I live the life and walk the walk.
My point was I was judged and slandered because I'm a bartender.
The doctor's opinion, which isn't true nor substantiated by fact, is written in my permeant file. He made an assumption.
Notice that doctor's are listed as big drinkers. I can attest to that fact first-hand. But I do not have a predisposition when I go to any doctor that they are heavy drinkers.
I know you googled for curiousity sake and I agree with most of their surveys but not all.
Here 's my take on lushes:
10. Upper class bored housewives 9. Restaurant or bar owners 8. Priests 7. Police officers 6. Doctors 5. Blue collar workers 4. Judges, lawyers, and politicians 3. Chefs 2. Bartenders or servers 1. Persons under the age of 21 (minors)
Cheers 🍺 🍾 🍷 🍻 🍸 🍹
Posts: 2977 | From Florida | Registered: Nov 2016
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bonnie,
I think the doctor's note was not so much about your being a bartender. It was just another rock in his pack to throw at you.
The main reason he wrote / thinks all that is because you have - to them - a very complex and unusual case not taught in medical school.
but - and this term and mindset IS taught in med. school - in his eyes - you are in the category of "difficult patient"
Especially for those who even whisper lyme, believe me, you would not have to have been a bartender to have any of those things said / written about you. Nearly word for word, I've seen it all in my charts, too. Big sigh.
When my body would contort & falls were often . . . but they were of no help, finally, I got a cane. Then they wrote "she has taken upon herself to start using a cane despite that nothing has been found to be wrong with her" (paraphrase)
[years later, newer tests for inner / middle ear found serious defects that explained a lot. But did the doctors ever think that maybe they had not ordered the right tests in the right specifications? Nope.
Or that - as with the ear bone issue - the right test has not yet been developed? Nope. That specific test would take another ten years past the time of those fall & crash appointments where I was rejected.
"Overly dramatic" sort of stuff, too.
Often the only reason I got a glimpse was if a nurse happened to leave a file open to my view while waiting for the doctor (perhaps the nurses thought I should know but often nurses were just as abusive, too).
It's a mindset of the entire system, often.
First time I saw they had marked in large letters inside my file chart cover this term, I said - "I'm not difficult . . . my case is." I had not yet then know I had lyme + other TBD. Still, even since, this is the way they have decided to be.
Which is why - while the system is broken but the doctors in charge don't think so - we must not continue to try to expect them to be different. We need to avoid them.
Change is vital, of course but it won't come by us continuing to see the bad ones and thinking, magically, they will finally see and understand and WANT to learn more. That's not how the change we need will happen.
This may be the most important eye-opening thing to help us find better doctors and avoid the bad ones:
posted
It all boils down to this. If you go to the
doctor or to the hospital for a Herx reaction or
for anything thing under the sun. The second you
mention lyme disease you are toast. you are
considered a psychiatric patient and for the
reason that Lyme DOES not exist. so in the
hospital they will see when they open your
records that you have lyme and very soon a
white coat idiot will soon be on the scene to
let you know that you are a crack pot and you
Dont have lyme. they will say a loaded question
like ( what makes you think you have lyme? with
all those antibiotics for a month you could not
possibly have lyme..here let me give you some
calming meds and i will give you the name of a
great psychiatrist..it ends there....you with
full blown lyme and the doctor just made alot
of money on you..I say we change legislation
and make it so if they miss diagnose you that
you wont have to pay them..now that is an idea!
-------------------- been there done that! Posts: 93 | From ny | Registered: Mar 2014
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
I keep thinking about why our message about TBI's isn't getting out to the mainstream. . .
But it is !!!
Local news stations have been on top of the epidemic all year. Today's broadcast warned not to let your guard down even though it's fall. Record tick numbers and bites across county.
Playgrounds are desolate, parents are concerned about their children getting bit, and rightfully so.
Local neighborhood walking and bike trails are abandoned.
City looks like ghost town, everyone holed up in their house, on beautiful sunny days, scared to go outside.
Locals KNOW to seek help immediately after tick bite, not the propaganda 24 a 48 hours.
Locals know you don't need rash, and that Lyme tests fail.
The only way someone hasn't heard of Lyme disease is if they have been living under a rock.
Think about it. . .
The reason there is even an epidemic is because of the CDC.
David vs Goliath. We will win in the end.
Posts: 2977 | From Florida | Registered: Nov 2016
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Good to know, Bonnie!
Only MDs are not yet convinced.
There must be a kipping point. It can't go on like that any longer!
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
It is getting out - people are finding out, especially if they know someone with Lyme. 10 years ago people didn't know what I was talking, and now more do.
Doctors will say ANYTHING they can think of, so don't take it personally.
As far as I'm concerned, it's time for us to tell them they're not doctoring properly when they try to pull stuff like that on us.
Here's the way I got a doctor interested once - I was telling the doctor that someone got Lymed in our city from a tick off the dog IN the house.
Suddenly he expressed worry, since he was scheduled to walk someone's dog the following week. Then he listened to me about protection.
That might be the way to do it - find the personal angle - go hiking, got a dog, got kids? Etc.
Posts: 13116 | From San Francisco | Registered: May 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
To all,
Doctors must be taught in med school to say:
"Patient denies X. Patient denies Y."
I say that because my husband's internist wrote "Patient denies smoking. Patient denies drinking alcohol or taking street drugs of any kind."
This was just a routine, totally calm first appointment with a doctor. Husband is not ill, etc.
I believe I have also seen the "patient denies" sentence in some of my records and I had no serious illness or medical problem.
Just want to let everybody know that this seems to be routine writing for a doctor in cases in which lyme is NOT an issue. So, I think they are taught to write this and it just means, "the patient has told me that he/she does not X, Y, or Z." A shorthand is "patient denies ..."
Anybody know a doctor they can ask?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I also agree that what was written is hurtful and wrong. I wish Dr.'s would get this figured out and sooner than later.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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