Topic: I've lost it and I don't care anymore. I hate doctors.
tailz
Unregistered
posted
I don't know what to do anymore, but suicide is looking kind of promising - and V-day would be the perfect day for it. Do you call this 'life'?!
I called Dr. B's office earlier this week, talked to his male secretary, asked for specific tests to rule out an adrenal tumor, and asked them to call me to let me know they mailed the slip. Of course, they never called, so I called - and they told me that he did order the tests I had requested, and the slip was in the mail.
I got my mail today, and all he ordered were the same old BS tests! Comprehensive metabolic panel, CBC, estrogen, progesterone, testosterone, blah blah blah. He ran these tests last time, and they show the same old NOTHING. Isn't that right there a clue to check something ELSE?! If they wait until I'm 80, I guarantee one of these tests will eventually show something wrong, but nobody DIES healthy!
And why is every stupid doctor out there so eager to diagnose my sweats, anxiety, and palpitations as menopause? Is it because I'm 43? You bet!!! And they've been waiting for my ovaries to kick as far back as my 30's!
Even if my estrogen or progesterone or testosterone were low, do you really think I'd be stupid enough to believe that I was indeed in nice little normal natural menopause after what they did to me two years ago? Do you really think I would take their stupid Premarin or progesterone or testosterone again so that I could further feed my TUMORS?!
I can't handle this anymore. These stupid male doctors ought to pull their mini WORMS out of their pants long enough to realize that menopause is just a symptom! A symptom of infection, toxicity, radiation exposure, and in my case, potential undiagnosed adrenal tumors with a high aldosterone in the past! More importantly, menopause is a symptom of my doctors' hatred for women. And let me tell you - it IS reciprocated at this point. I HATE DOCTORS!
I DO notice I am being treated differently by doctors since around 35, and it's gotten worse and worse once I inched closer to 40. Now that I'm over 40, screw me - all they want to do is look at my sex hormones and pronounce them dead. Screw that.
I called his office and asked why he hadn't ordered the tests I had requested, and the secretary assured me that they were included in the urine test. The secretary did not realize, however, that he hadn't even ordered a routine urinalysis, let alone 24-hour urine catecholamines and metanephrines, so even if I had not worked as a phlebotomist, that lie fell through instantly. I told him I wanted to talk to the doctor, but I was told the doctor doesn't do phone consults.
Don't these idiots realize that if I do have an adrenal tumor, they are KILLING me???
I'd set up an appointment with an endocrinologist, but heck, every specialist in this area wants a referral from a primary doctor (even though my insurance does not require referrals!), and they are never going to get one if my primary keeps running the same old tests. Also, someone here told me the only thing they can diagnose is diabetes anyway.
Like I said before, I WANT AN AUTOPSY. I could have gone to medical school myself and diagnosed and cured myself in half the time I've given 35 doctors free reign.
And don't anybody come on here and tell me to get put on antidepressants either. Allowing my doctors to steer this ship of mine was how I ended up like this!
I'll tell you this much - NO doctor will EVER test my estrogen, progesterone, or testosterone again. I am being treated like this because I am female and because I'm middle-aged. I have ZERO respect for male doctors and researchers.
I started to post something witty and attempt to get you to see the "bright-side". The problem is you have articulated a real problem and there really isn't anything witty to say.
I don't believe suicide is the answer however. Even without thinking about the spiritual side of suicide, it seems to me that if you do go to that extreme, you've let the baxtards win.
There's got to be a way to find the right female physician. My wife won't see anyone but a woman doctor and the doctor has to be at least 45 years old or she refuses to be treated by them.
All of you Lyme folks are going through hell, we who support you try to understand your pain, but that's impossible. I just know that this life is the only one we have here on earth. The next one will be much better, but we've got to get through this one first.
You hang tough, cause I can't see how it could get any worse, so at least it's all down hill from here (or maybe up hill depending on how you look at it).
LymeDad (Philosopher Extraordinaire) NOTPosts: 681 | From California | Registered: Oct 2005
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Tailz I am so sorry you are feeling this way. No one feel should this way. I also have nothing profound to say, but hoping you get through this.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi tailz,
I don't have anything profound to say either, but I am sorry you are going through this. And I am so sorry you are feeling so down.
You are not alone, we are all here for you..
[ 14. February 2008, 04:23 PM: Message edited by: Beverly ]
Posts: 6638 | From Michigan | Registered: Jun 2001
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I wouldn't let them win. You have to understand that they are PRACTICING Physicians. If they are not knowledgeable or teachable, it is ok to find someone who is. Feel good about knowing what you need, and don't accept no for and answer.
There is more than one way to accomplish many things.
This is not medical advice! This is just a note of encouragemment.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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I am sorry you feel this way. I hope knowing that people out here care about you helps.
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
This is the exact reason that I fired all of my male doctors about ten years ago. I have three doctors now and they are all female.
Maybe it's time for you to do the same thing. I love, love, LOVE my doctors!!
JoAnne
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I was thinking the same thing as Jaolo is.
Can you find a female Dr.?
Hope answers come soon for you.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
Sorry you are feeling so desperate. I hope you have luck finding a good doc. It is so very important, and so very hard to do.
I just want to add, I completely understand your point, but screening docs based on gender is not any better than docs screening patients based on gender. There are plenty of female docs that are just as narrow-minded as the men. A lot of them have to get that way to get through the med school men's society. Just my 2 cents.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
What you need to rule out/in adrenal issues, is AM and PM cortisol and I believe ADH(i think im wrong on this one though) and you can get a brain MRA to check for a pituitary tumor and MRI of the adrenal glands.
The one LLMD i saw refused to even think lyme for me, ran these tests over and over thought i had cushings(im very thin)...sent me to Penn Endocrine.
The Endo i went to, said I didnt have Cushings, my cortisol was ok, they ran three rounds of labs and were honest, if nothing was found they handnt a clue what was going on with me. Nothing turned up.
Ive lied to specailists before and told them that my PCP suggested i see a endocrinologist at Penn or wherever.
I dont think Dr B is the right dr for you for non lyme issues.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Sorry you are having such a horrible time
Sending you lots of
If your insurance doesn't require a refferral why do the specailists? That is kinda weird
posted
Tailz, I think you need referrals to kinder, more considerate and thoughtful doctors. I too have found that just gender alone - ie, female doc for us -- does not necessarily mean automatic sensitivity towards female patients. It's the quality of the doctor's attitude towards others that also counts. Don't give up yet. Get to the people you can work with.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
sorry for all your problems..but don't give up on an Endo..they don't just treat for diabetes..i went through alot and it was my thyroid...it runs most of your body functions...i am so much better now..hang in there...keep fighting for yourself..you will get through this
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Tailz,
I am so confused. I clearly understand your frustration though.
I thought you had just been diagnosed with babesia..
For me it causes the night sweats, anxiety and palpatations.
I hope that this is the cause of your problems and NOT a tumor.
I agree with finding a woman doctor. Even if it is a Primary....
They are usually linked to other women doctors.
Go in with an open mind, but don't expect them to understand Lyme and/or co-infections.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tailz
Unregistered
posted
You're right. Female doctors stink, too. I had one of those during this. She hung up on me. I don't even remember why - my memory is gone. I know she didn't seem too concerned that I'd cold-turkeyed a benzo, and from that point on, my pupils were tiny - always.
So what am I supposed to do? Demand disability put me through medical school? I'll probably have a heart attack before then.
Why can't I bypass my doctors and order my own tests? I would know what I'm dealing with by now if they'd have handed me the pen and pad. In fact, I would have saved my insurance company thousands and thousands of dollars in the process. What doctor ever thinks to check a person's aldosterone? I sure did, and it was high. Do they think I just got lucky?
What if I take the slip he sent, white it out, copy it, and rewrite what I want? Is that legal? I know I just have to write down the right symptoms to get it covered. Or is that insurance fraud? Do I really care if it is at this point?
He probably won't call me either. Then I'll show up in another week and a half, wait 12 hours to be seen in a room where my Trifield meter's needle jumps every few seconds, and then have a 2 hour drive home trying to see the road with pinpoint pupils and a fried brain.
I would switch doctors, but every time I switch or start seeing specialists, my Medicare supplement insurance premium goes up. What's it going to be by the time I'm 60? And this just wears me down further - getting my hopes up that the next doctor will listen, only to find that he/she is exactly like the 35 before. I'd have better odds getting disability to put me through medical school.
If I did, I think I'd go into urology. That way I could make sure I do sperm counts on every guy who comes in with any complaint after the age of 30. That and STD testing. Maybe I'd even start a new trend and require guys come in for their "annual" (sperm count/STD check).
I'm just sick of this. Maybe I'm even sick of being female if that's what scientists think of women - I don't know. If I'm sad, it's my hormones. If I'm anxious, it's my hormones. If I'm sweating, it's my hormones.
Docjen's right. That's what they're taught, and that's what they believe. Only I don't think my changing my attitude towards doctors will have any effect. This world is geared towards men. Isn't it obvious?
Doctors are prejudiced - that's what I learned through this. You walk through the door, walk out, and they're jotting down a little story about you in your chart. I read it, and I just want to vomit on the doctors who wrote the stuff.
posted
I completely wholeheartedly agree with everything you said. I was very close to suicide this past summer before my lyme dx.
i am in tx now, and a teensy bit better, but still frustrated.
I dont think the blood tests dx a tumor, I think ultrasound or MRI dx it.
It doesn't matter anyway, because even if you adrenals are fried there is not much they can do except give you hydrocortisone
I tested low for adrenals several years ago, and went on low-dose cortisone for about a year and a half. it made me feel better at first, but like any other steroid just masked sx, and I think it may have made the lyme worse.
I had huge fibroids causing hemmaging, and had a hysterectomy in 2003, one of them was 4cm. i kept my ovaries, but my hormones are all low and have been, although I am estrogen dominant
I have nodules in my thyroid, several, getting more and more every year. one is over a cm, which is huge. my thyroid levels are all over the place.
I have one of the best endo, female, in the county and she has offered me no therapy even with all the tumors and abnormal tests. except she told me my vitD was low and all my sx are from that.
female dr's are not any better. I had one tell me I was just too fat. i had a female doctor at johns hopkins who I call "barbie doll" who thinks I am mentally insane because I dont do my hair or wear make-up or dress nice.
all the other moms my age I see at my sons soccer games and wrestling meets look and dress like me.
I also wanted an autopsy, i feel its the only way they are going to find out whats wrong. I wanted them to biopsy every organ in my body
but I realize that even if they did, they would not know what they are looking at. and even if they did figure it out, they do not have the ability to treat or cure anything anyway
i could have gone to medical school and figured it out myself too. but medical school woudl probably be useless, I would be better off reading on my own
so all these hospitals, medical schools, medical research facilities, what DO they do anyway? they know how to treat cancer, diabetes, and heart disease, and not very well at that.
nothing new has been discovered or cured in many years. when it comes to chronic illness, they have no clue.
most doctors and people who go into medicine are idiots. if there are any bright ones, they are quickly squashed and their spirits broken before they ever get anywhere.
if you read what stuff they teach in medical school I bet its a bunch of BS that means NOTHING to anyone or is at all useful.
I have seen some college level courses and the books, the homework, the readings, and assignments are just a bunch of meaningless bull****.
same thing at my work, some of the stuff we have do, required presentations we have to view, classes we have to take are about NOTHING. these are created by people who have jobs just generating pages and pages of meaningless bull crap
it wasn't like this when I was in school. there was history, science, math, reading, writing, the basics. now if you look at college courses 75% of them are meaningless crap.
so maybe this is what has happened in medicine. instead of curing disease, they are probably writing up pages of meaningless crap.
[ 15. February 2008, 07:06 AM: Message edited by: roro ]
Posts: 615 | From maryland | Registered: Oct 2007
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
tailz, im sorry that you are going thru this i really am, because i can relate.
i went to my gyno two weeks ago, they forgot about me, i waited for 2hrs in the waiting room, i just thought he was running behind. I was there for painful periods, he wanted to put me on LUPRON.(um think NOT)
when i told him my thoughts he said well neurontin is also a serious drug. he offered me cookies and brownies for my wait.
On another note, I begged one LLMD to order thyroid panel AGAIN, and guess what one of the thryoid markers was a tad low, i went on Armour and gained weight.
You need to find a dr who will atleast listen to you and believe you. They should atleast try to figure out why you can only eat canned PEAS!!!
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
I think it would be best to find people who will really think with you through your situation.
And be careful re test results. I was supposed to have had a pituitary tumor per MRI results, then when one of the top surgeons in the country did the exploratory surgery, turns out there was no tumor, just hyperplasia. He said I was one of three in ten thousand patients he didn't understand(hmmm re those other two...).
It had been stimulated by the Lyme, but no one knew it then. I emailed him when I found out what was going on and he said no one thought about Lyme then. I might add: or now.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I'm so sorry you are going through this. Please
don't kill yourself. I can tell from reading
your posts that you are too smart and determined
not to win in the end.
I can't claim to know what you are going through
because I am a Lymie's Mom, not one myself. But
after almost 8 years of watching my baby suffer
I have some idea, anyway, of how horrible it
must be.
I think most of the advice you have been given
is good and I won't reiterate it. I only have
one thing to add.
I have had to get legal advice to force doctors
to care for my child on more than one occation.
Through this I have found that the most
effective way to get the test or care I want is
to write a letter asking the doctor to confirm
IN WRITING that he is denying you the test (or
whatever) and his reason for denying you the
medical care you need.
It is very important that you use those
words, "denying the medical care I need".
Only once did this not result in immediate
reversal of the doctors stance. In this case I
followed up 3 days later with a registered
letter and got immediate results.
DO NOT go into an explination of why you think
you need the test as that only leaves them
wiggle room to denie. Just short and sweet:
"This letter is a formal request that you
confirm, in writing, that you are denying me
access to (fill in the test/treatment) and your
reason for denying me the medical care I need.
Sincerely..."
Contrary to my early fear that such a letter
would undermine my relationship with the doctor,
I actually found that the doctor, in most
instances (I have used this 4 or 5 times over
the years) actually starts bending over backward
to make sure I am happy.
You will get well and you will be happy again.
I know not soon enough for today, but you will.
Dara
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Tailz, I'm sorry you are experiencing such frustration.
I don't understand why you believe you have an adrenal tumour? (Maybe I missed a post?) Do you have a history/family history of that?
I'm wondering how long you treated your babesia -- I remember you turning up positive for it. How long/which meds for it? I would sure rather hope that is the source of the problem and symptoms seem to fit.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
tailz,
i'm so sorry to read all your posts above and you're hitting bottom.
please consider doing as NICOLE'S MOM, DARA, suggested; good advise from someone been there; done that!
Please remember also to use this IF you are feeling as you stated above, TAILZ, WE CARE ABOUT YOU!
NATIONWIDE SUICIDE HOTLINE 1-800-784-2433
tailz, i'm also sending you 1 PM of PA FEMALE LLMD! check into this, will you please? thx
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daise
Unregistered
posted
Howdy Tailz,
Most conventional docs don't know beans.
Idea: Look in your insurance provider book for a doctor--perhaps a clinic will have a friendly, integrative type of name. That's something the robot docs don't normally do.
Idea: Call up all your female friends for referrals. Who gets mentioned more than once?
People have offered good solace for you!
The way we are treated as females is frustrating, it's stressful, it's wrong and it's yxuvauvyxzyxtX!!! , huh? Ya.
Just like you did now, seek out friends if you are feeling like it's time to split this life. OK? Please?
Remember when we played before, on a November 17 post? I'm printing it again, below.
_______________ <<< >>> ______________
You're a scream, tailz.
What you wrote just hits the old nail right on the head.
When I was getting diagnosed for Lyme, my male PCP was in contact with my consulting LLMD by phone. I was negative by 3 western blots. I'd told him about the huge bullseye rash. I had a CD57 count showing chronic Lyme disease, active infection.
My male PCP concluded that it was atually ~menopause.~
That was worse than when he'd first told me, "Lyme disease is rare and only in Connecticut."
I said, does menopause cause arthritis? Does it cause severe muscle pain? Does it cause severe, constant headpain/headache for 2 years? And other choice stuff. Then I stood up and limped out of his office. I was enraged!
It must have showed. A woman sitting in his waiting room said, "Is he really that bad?" Honest! I looked at her and shook my head, "yes," dumbfounded.
Some docs, if they can at all peg you with menopause (you're 31 years old with complaints, so it must be menopause. You're 32 years old with complaints so it must be menopause) they will. Then they get to change the board rules. Ever after that, ANY sign or symptom is attributed to your menopause.
I'm sorry you got your uterus and an ovary ripped out. I hope he gave you decent hormones and amounts.
I know a woman who had a hysterectomy and her female doc gave her no hormones at all. That poor woman. She has no medical insurance now. Still no hormones. Good grief.
I could feel that what you wrote came straight from your heart.
Lets climb a mountain. How about Pike's Peak. Are ya with me? OK. Here we go. Well, lets drive up. Up we go. Higher with every switch-back. We're breathing harder now--not much air up here. Oh ya. We're at the top.
Two Lyme patients at the top of Pike's Peak, grasping for air and we have a hard time getting out of the car. That's OK. All we really have to do is roll down the windows and yell ...
"Doctors: Practice medicine, why don't cha."
Do you feel better? I know I do.
We drive back down, braking every inch of the way. We get stop at the checkpoint for drivers headed down. We're told a tire is ready to pop from the braking or the air or whatever.
We conclude that a stretched tire is a small price to pay--that is if any one of these particular docs had heard us.
Wait a minute. There's something else we forget to yell ...
"I AM NOT A UTERUS!"
(Adding feb 14:)
"I AM NOT A UTERUS-LESS. I AM A HUMAN BEING! WHAT ABOUT THE REST OF ME?"
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
you are absolutely, 100 percent right on about sexism in the medical industry. it's a horrific situation and i'm so sorry you (and so many of us) are on the receiving end of this bull****.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
"I AM NOT A UTERUS-LESS!"
Oh my gosh I can't believe how funny that is! I think really what we need for advocacy is one of us to do stand up comedy. I'm nominating tailz:
"If I did, I think I'd go into urology. That way I could make sure I do sperm counts on every guy who comes in with any complaint after the age of 30. That and STD testing. Maybe I'd even start a new trend and require guys come in for their "annual" (sperm count/STD check)."
I'm not kidding by the way. Maybe I have the guts to do it.
Today, I went to see a Neurologist. He said, "Your symptoms don't fit into the usual constellations for Neurological disorders. I want to be honest with you, and tell you I'm thinking at this point you have a conversion disorder."
Now should I go further?
"I find that 20-25% of the patients who I see who are monitored in the epilepsy monitoring unit have conversion disorders." [Can you imagine: 20-25%!?]
"Well," I said, "I don't think I have a conversion disorder." "Most of the patients I diagnose with a conversion disorder are in denial." (How do you argue that?)
"Well, I saw a psychiatrist for many years, as well as a therapist. I have a high degree of conscious-subconscious integrity."
"The fact that you saw a psychiatrist just tells me you are MORE likely to have a conversion disorder."
I said, "This is 2008. People go to Jungian Analysis for years, and nothing's wrong with them. I went to develop awareness".
Anyway, sounds like a comedy routine to me.
Tailz: I live in the land of idiotic; finding an open-minded doctor here is near-impossible. BUT you live in the US, and for all Americans complain about US doctors, you have a higher percentage of non-boneheads, bc YOU encourage critical thinking in YOUR country.
So I would encourage you to stop dealing with twits, and find yourself to an Environmental Clinic, or as one person suggested, somewhere that "sounds" alternative. And I have met as many dolt female doctors as I have male ones.
And truly consider comedy. It will be cathartic.
Much love,
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Tailz,
I'm sorry for all the crap you've put up with in your life.
Dara (Nicole's Mom) had an excellent idea.
You recently posted a symptom list for the condition you suspect. You could include it to objectively support your request/demand for that particular test.
Know the limitations of the tests in question. They may not be 100% reliable.
Attach the symptom list and highlight every symptom you have & note how long you've had it.
Highlight the tests used to diagnose or rule out the condition. Put these tests in the letter to your physician.
This may make your physician realize he's not being rational in his decision to deny you the right tests. Maybe he'd realize you'd quit badgering him for these tests if he could see the logical reason you want them.
Hypochondriacs think they have any disease they read about. A person who recognizes his symptoms in one disease is not a hypochondriac.
Make a list of failed treatments you have tried...if the hormones haven't helped, then you have something other than menopause. Duh!
Demand to be referred to a nutritionist, allergist, and GI doctor...show your physician a log of what you eat one week. Let them know you want to eat a variety of foods, but other foods make you ill.
Please don't take your life.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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Peacesoul
Unregistered
posted
This is my question; have you ever had a Dr in the past that listened to you or helped you?
If so, can you go back to them?
Has every dr you seen treated you this way?
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
All me crazy, Tailz, but maybe you could get more answers to a lot of different questions if you sought out a good ART practitioner or kinesiologist.....
Look at the people on this board who have been able to respond best to the changing 'faces' of their respective illnesses and act accordingly.... I think you'll find that most of them have used some form of muscle testing.
Some ART practitioners are MDs, so you wouldn't necessarily be paying out-of-pocket for everything....
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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tailz
Unregistered
posted
roro's right. They have no clue what they are doing. My ex-husband's sister died about a year ago at the age of 50. They found her dead in the bathroom. And guess what? She had an autopsy and they couldn't figure out what killed her?! As a result, they have it listed as a homicide, but nobody thinks she was murdered.
I had an argument with someone on another forum. She kept ripping me apart because I was telling everybody they had Lyme, ES, or both. She later assured me that maybe only 1% of the people on the forum had Lyme, and that she 'knew' this because she was an OB/GYN medical student and was at the top of her class. She told me she knew more about Lyme than I did.
I like Dara's idea, and I never thought of that. It seems the only way to get doctors to move is to threaten them with a potential lawsuit and to document it - that's how I got my epipen the one summer.
I forget who asked here - the reason I worry I have an adrenal tumor is because not only do I have/had all of the symptoms that could be explained by one of these bugs - severe weight loss (to the tune of a malnutrition dx - though I gained weight on my canned peas diet), profuse sweating (though I have fewer severe episodes in the winter), heat intolerance (if it's 65 and sunny, I'm roasting - in fact, if the sun shines on me, my pores all open), severe anxiety, behavioral changes, palpitations, rapid heartbeat, etc... - I have several other symptoms of concern.
My digestion stops on occasion (no digestive sounds), and when this happens, I feel like my BP is high, and on occasion, I feel like my heart is skipping beats or speeds up briefly.
I occasionally get SEVERE tremors - this is more than just a little shakiness - it's almost seizure-like, though I am fully conscious.
And I have these things in my groin (and on my chest, too, I noticed) that I have been calling freckles, but they are different. They are larger and lighter in color than a freckle and seem to be caf� au lait spots. Add this to my high aldosterone years ago and no focus to remember who ran the test and what they did afterwards, and yeah, with the stress I've been under, my adrenals are being taxed. I think I may have even seen an endocronoligist back then, but all they did was rule out diabetes.
I'm taking artemisinin for my babesia though, and occasionally I try taking mastic gum - which sometimes helps, too. Mastic gum kills h-pylori.I think I read that there was one documented case of h-pylori going systemic. Could I be the second case? I also take metronidazole and Cipro in clips, though I do not tolerate the Cipro at all. I do better with the metronidazole.
canbravelyme - I loved your story! You can't really argue with doctors though once they 'peg' you - they figure that is just another manifestation of your mental illness.
I honestly felt like I was an actress in some horror movie throughout this, wondering why doctors could not SEE I was ill. I eventually reached the point though that I didn't CARE if they thought I was crazy - fine! - I'm crazy if you say so, doc! but I'm still dying! I'll tell you this though - I will never allow them to test my female hormones ever again.
I know it isn't menopause, too. When my estrogen is too low, believe me - I'll never forget what happens. I start shrinking, sweating, my vagina loses all moisture, and my pubic hair falls out. When my testosterone is low, I have no desire for sex. And I'm not sure what happens when my progesterone is low - in the past I would get 5cm cysts on my left ovary, but they gutted that ovary and I have no uterus, so who knows?
Thanks for all your responses though. I figure when this is all over, it's a toss up between comedy and authoring a book entitled, "How to Gain 20 lbs on Canned Peas".
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posted
As a doctor, I can say that, though well intentioned, the vast majority of docs don't have the knowlege about normal function to be able to help patients navigate the troubled waters of complex chronic illness or they are afraid of some type of censure for thinking "outside the box" regarding such problems.
Rather than figure out what your unique situation is, they are trying to fit you into a health situation they have a ready cookbook to deal with...I am not condoning this, but it is supported by the system, one I refer to as the medical-industrial complex, one that puts short term economics above patient satisfaction and well being.
It is a problem, and one the medical establishment is aware of, but that inability to think "outside the box" applies to those who are supposed to be monitoring the system as well.
No matter what the health problem though, and I firmly believe this, it and its solution lie within the body itself.
No drug or procedure devised by scientists or doctors can equal or better the nature of the human body to self correct when given the proper nutrients and obstructions to the normal circulation are removed.
Posts: 442 | From Biddeford, ME | Registered: Nov 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Tailz if it makes you feel any better, I just got home from work.
I had a half a cup of coffee and everything turned white, my hearing got faint and I started shaking really hard.
I went to the nurses office and my BP was 160 over 100 pulse 130.
I tried to get up and felt like I was going to die!!!!
Last night I had Ambien, Lyrica, Benadryll...you know the same stuff.
Today I had coffee and I was in so much pain that I took some alleve.
My poor mother had to pick me up at work. They kept giving me these little cups of water. What the heck is that supposed to do!
I got a hold of my bag and downed a bottle and then my BP went down.
I swear I thought I was going to die. I was SO SCARED!!!!!!!!!
Now Im sitting at home wondering what my next move will be, do I find a new doctor or just meditate and rot away in the house I grew up in.
PAIN SUCKS!!!!!!!!!!!!!!
Posts: 2905 | From New England | Registered: Sep 2004
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
quote:Originally posted by DoctorLuddite:
Rather than figure out what your unique situation is, they are trying to fit you into a health situation they have a ready cookbook to deal with...I am not condoning this, but it is supported by the system, one I refer to as the medical-industrial complex, one that puts short term economics above patient satisfaction and well being.
So true. I'm sure most of us here can relate to that.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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posted
Thx, Dr Luddite - we cannot work with doctors who are unwilling to convert to outside-the-box thinking. In other words, too many doctors have outside-the-box conversion aversion(OCA).
Posts: 13116 | From San Francisco | Registered: May 2006
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Taliz, We are the same age and I know exactly what you mean.
I never knew anything like this existed and I honestly have lost who I am from all I've been through.
Suicide is too permanent, I've nearly been there done that, but where there is life there is hope, keeping your hope.
Have you thought about finding a new doctor? I am with ya Taliz, I hate doctors too. They all think they are gods yet they can't cure SQUAT!
Hang in there, you aren't alone. I myself have to find another LLMD, I need IV and they aren't listening to me. I will never be well and I hope I don't die before I get IV.
So can relate to your frustration. Hang on, just don't lose hope...ever.
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
tailz-is the dr b you had trouble with the one on long island? i didn't know he was still seeing patients. also-have you had a thyroid test-or are you treating it? i think a lot of your symptoms could be thyroid.
i'm sorry for your problems. as time goes on (i've been dealing with this 35 years or so now) i feel i know less and less because there are so many new things to deal with. i hope you find some answers.
the getting the docs to put in writing they won't treat you is the best thing i've heard in a while. good luck.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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quote:Originally posted by lpkayak: A) tailz-is the dr b you had trouble with the one on long island?
B)the getting the docs to put in writing they won't treat you is the best thing i've heard in a while. good luck.
A)...NO...in PA B) absolutely!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Tailz,
I saw an Internist and he thought I may have an Adrenal Tumour or a Pituitary Tumour, he wanted to test me for Cushions Syndrome and other tests to do with adrenal and Pituitary Tumour,
SO many tests, I tested positive for HIGH urine 24 hour cortisol, so he then ordered the Dexamethasone Supression test, and this came back Negative, I had to take a steroid I think for the test, and I got worse, on a low dose one day steroid, but this was a must to take
to rule out Tumours of the adrenal and Pituitary,
SO, he said I was negative, but he said that sometimes things can be just under the detectable positive testing, and to see him in 6 months to check again.
I now am seeing another LLMD for a 2nd opinion and he tested me at IGENEX and I came back very positive he said for Babesia on 2 tests. I also came back positive for lyme.
AND I have EMF sensitivity, and it got better before from Babesia treatment, this new LLMD said I needed much longer Babesia treatment and to be treating lyme at the same time, which
I feel strongly that this is right, so that is good.
I am to be on Mepron and Azithromyin for Babesia and I will let you know how it goes as we both have EMF sensitivity.
I also lately am so agitated and never had this before, he is going to treat me for Bartonella maybe he said if things dont go well, even though I tested negative, but
my breathing is very involved.
If I end up having a Tumour, then I will let you know also, but that wont be for a few months the testing I think from the Internist,
I had to see an Internist to get tested for the Adrenal tumour, and he was the one that told me he thought I might have an adrenal or pituitary tumour because of my symptoms that fit the clinical picture.
Something is very wrong lately as I have severe anxiety off and on, in the body, severe nevousness, I am not sure if this is lyme or babesia, but
I am going to see the Internist too soon just to be safe because my breasts have gotten so huge and that is not right, even though I gained 65 lbs, I went from a 36B to a 38 DDD.
Not right I feel.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I just want to reiterate again: obviously I won't know what's going on in someone else, but for me, they thought I had a pituitary tumor, and I didn't - it was hyperplasia and nothing had to be removed. I had a high prolactin level then and I still do.
So be careful about Lyme symptoms - maybe we're sometimes being stimulated in areas without developing actual tumors.
Posts: 13116 | From San Francisco | Registered: May 2006
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
Hey GF, get a hold of yourself. You can put that anger to much better use. I went through the same thing at age 46. Was told I was well into menopause for 8 months by my primary. Then, a female MD put me on HRT and antidepressants. I just kept getting worse.
I too was angry but, I learned to channel that energy into finding the right answers as to why I felt so sh....tty all the time. Anger takes tons of energy and I needed all the energy I could find to get my arse to the right MDs.
When my body finally just stopped working, organs and all, an emergency clinic MD pumped me full of steroids and then I asked her to test me for EVERYTHING. She did. Voila! I hit the Quest Labs lottery with very positive Lyme bands. I was referred to a male IDMD for IV therapy.
I have to say, he is egoless and has been nothing short of supportive and honest with me. He put me in the hospital for a week and ran every test under the sun and with many specialists. It was the surest and fastest way for him to get to the bottom of all that was "bothering" me. My hormones were fine, btw.
What kind of insurance do you have? Is there any way you can get admitted to a hospital or clinic for complete testing? Some of the tests need 24 hour monitoring and some need serious radiology equipment. You can't do this in a Dr.'s office.
It is only a suggestion. I think I hold the record for how many specialists I have been to. If I didn't like one or the staff, I moved on to another. I am now happy with most of my medical team and the hospital they are affiliated with.
Also, you might want to consider some alternative therapies, like Cranio-sacral, Mindfulness Cognitive Behavioral Therapy (it just teaches skills to handle stress), Massage, take a yoga class. I feel from your tone that a little TLC from non-MD practitioners may help you to get through this a little better.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Tailz, when are going to learn that you are in charge of your own life and health? When are you going to realize that they are just doctors and not God?
When are you going to learn that all you need to do is use them for their accesses? Do not expect them to take care of something they truly do not know how to fix or repair.
You can either stand up for yourself and fight with everything you have at your disposal or you can lower yourself and feel all depressed because there is nobody to help you.
Please use your energy to find someone or something to help you. You know there are resourses out there. You've just got to find it.
I don't want to see anymore talk about you and killing yourself. You are going to find your way out of this. Do not rely on a doctor to do it. Find a doctor that will give you what your body needs and use him/her.
I know you are ill. I've been there, it sucks. It feels like a slow death. But there is choices. Think outside of the box, lady!!!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I already posted to you but I thought today, I would post this to shorten what I said.
See an Internist for an Adrenal Tumour or a Pituitary Tumor. I am in Canada, and saw an Internist because my LLMD wanted me to and my Own Medical Dr thought it was good to
rule out anything else.
Also, Artemissin did NOT do anything for me and my Babesia. Had I not gone on Clindamycin and Quinine I most likely would be Dead Tailz,
that is how bad babesia and lyme can be together with the mix, unless I have some other undiagnosed disease, and do far nothing shows up.
I would die because of my breathing, that is why, but as long as I keep treating, so far I am not dead.
I am now going on Mepron and Azithromycin for 2 positive Babesia tests.
See an Internist for an Adrenal Tumour tumour, or Pituitary Tumour.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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