posted
For two years I was going to this one practice. I saw 3 different doctors there. I would go in, with a long list of my symptoms written down for them. You know what they said? "Oh, we can only treat one thing per visit. Let's treat the pain and we'll get around to that pins and needles sensation some other time." "Uh.... couldn't it all be related?" No response.
Finally they tested me for Lyme disease as a fluke, and it came up positive. They gave me 30 days of antibiotics, expecting years of being sick with Lyme disease to go away. HA!
Then, they referred me to an Infectious Disease doctor. I travelled 80 miles to see her, only to find out she doesn't accept my insurance. That was a bust.
Next, they referred me to another Infectious Disease doctor. This time they found out in advance that the doctor doesn't accept my insurance, so they referred me to a third Infectious Disease doctor... one that accepts my insurance.
While waiting for an apointment with that doctor, 3 months after the diagnosis, I became severely ill. I ended up finding out at that point that I have Babesiosis. The primary physician gave me 14 days of Azithromycin for that (I don't know if it worked or not).
Two more months went by, waiting for the third specialist to schedule an appointment to see me. I called them. Turns out a month prior they had contacted my primary doctor and told him they wouldn't see me because the ELISA was negative while the Western Blot was positive. They weren't convinced I had Lyme Disease, so they weren't going to see me.
Then, I ended up in the emergency room again, where I was assaulted by a physician. They ended up putting me in a mental hospital for 3 days, saying I was "delusional" because I was claiming to have Lyme Disease when there was no evidence of it. HA!!!
I called many doctors since that time. Many didn't accept my insurance. Some, I travelled several hours to see, only to find out they know nothing about Lyme Disease. Now when I call a doctors office, I request to speak with the doctor to find out exactly what his/her stance is on Lyme Disease. Do they think it's hard to catch and easy to treat, or easy to catch and hard to treat? Do they have experience treating patients with Lyme Disease? Having tested positive on the Western Blot, and negative on the Elisa, and having all the symptoms of Lyme Disease plus a Herx reaction on antibiotics, would they treat me for Lyme Disease?
Today, I called a physicians office to ask these questions. They spoke down to me like I was a nutcase. Then, the receptionist outwardly LIED to me, saying they didn't accept my insurance, when I know for a fact they do. I wouldn't want that doctor as my physician anyways, if the receptionist talks to the patients like that.
I'm always treated like I'm a hypochondriac or mentally ill. I've been told I read too much. I've been told I have fibromyalgia and I'll just have to live with the pain. After crying to a doctor, begging to be treated, they said I'm just depressed and all my symptoms are just a physical manifestation of depression. I've been told by a certain physician that she wasn't going to run tests for Lyme Disease because the insurance company got on her case for running a complete panel, saying it cost too much, and she was afraid they'd get on her case about the cost of those Lyme Disease tests.
I lost my marriage, I had to temporarily relieve custody of my kids to my ex for 6 months, I lost jobs, I was kicked out of college, friendships and relationships ended... all because of this illness.
Yeah, I'm frustrated. Yeah, I've gotten depressed. Yeah, I'm really f^#%ing angry. Do you blame me?! And if I express any of these feelings, or if I explain to a physician all I've gone through, they just treat me as if I'm mental, and deny me treatment.
I've tried lying to doctors, or leaving out information, only to find out the information is in their computer system. I've been blackballed from the medical community, it feels like.
ARGH!!!!!!!!!!!!
Thanks for letting me vent.
Is it just me?
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Yeah been here and found out years later that my medical charts were notated to read "call this number before treating patient" to read more in depth that on my charts there was a comment that I had a "personality Pathology". because when being asked intake questions they would put the answers to a previous question down for a current question.. then keep asking the questions without adequate time to answers..
They had my parents as being deceased at age 60 and 68.. I realized this was their own pathology since that is the age difference in my parents.. so they had the wrong answer to the wrong question.. See what happens when you go to HMO's!!! they dont even have time to do a proper intake!
I'm glad I got that uneasy feeling that somethign was wrong with the place.. and I stopped going to them to be wrongly diagnosed since it was "all in my head" and my GB being almost non functional that they Dx IBS was all in my head too,, and the 2 back surgeries I had a year after they told me I was too young to have surgery it was not an option was all in my head too!
yeah ok .. I'm not sick and your not a doctor!
Something is seriously wrong with our medical community... where are they getting their licences, half of them, out of a cracker jack box?
Ok now on a personal note that I'm sure you will relate.
I even told the MD when he started on you sound like your depressed.. I told him: 'I'm no more depressed than you would be if you were in my shoes. you take the damn pills...'
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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lyme_suz
Unregistered
posted
MamaFunk,
wow. you have been thru a lot and have a lot on your plate.
this lyme gets better with aggressive treatment. Like from a lyme dr. who will get you on some good strong antibiotics and moniter you for problems. Some of the antibiotics are not overly expensive. I hope that you can get in to one of these good drs. Getting to the pt. of hallucinations says time for treatment that will give some improvement right away.
I wonder if an urgent care place would give you antibiotics to get you thru til you can get in to lyme dr. I can usually get them if I insist that my sinus feel full and forehead hurts...
I am sick and have 2 kids with lyme. I can't imagine what you are going thru as single mom with 3 little ones.
I am praying for you to get the treatment that you need and some help with you little ones.
This just makes me soooo........furious. I have gone through the exact same thing with Dr.'s to the point that one had the audacity to quote his hypocratic oath to me, that he had a responsibility to do no harm and that was why he was not going to treat me for lymes. HE did not believe I had lymes, yet he offered no explanation as to what he thought I might be dealing with even though on my previous visit he acknowledged that lymes was often a differential diagnosis(see my post under medical/topic refused treatment). I will be filing a complaint with the state board of health on this one. I have been pursuing diagnosis and treatment for 5 years and have had symptoms for at least 10. I do not have insurance so I am always puzzled as to what the problem is as regards treatment. Seems no one wants good old fashioned "GREEN". I guess they can't take advantage of over/double billing this way.
I hope there are doctors/doctors significant others/medical personel in all areas reading these postings. SHAME SHAME SHAME ON ALL OF YOU FOR TAKING THE EASY WAY OUT AND CAUSING SOOOOOOOOOO MUCH SUFFERING TO PEOPLE SEEKING YOUR HELP.
I've not seen anyone else draw this comparison, but I know from personal experience that this is exactly the same medical midget mind set that occured at the begining of the AIDS PANDEMIC.
Example: AIDS: Only happen to certain members of population. LYMES: Only happens to people living in certain areas. AIDS: Multiple Unexplained Symptomology and system involvement. Lymes: Multiple Unexplained Symptoms and system involvement. AIDS: Insurance Companies won't cover treatment. LYMES: Insurance Companies won't cover treatment.
and many, many more examples I am sure we could all make. To deal with this when sick is just *&#@*+@ disgusting. These doctors should be reported,named,insurance companies the same. Our health care system in this country is fallng apart, thank God! Perhaps our involvement through whatever level of activism can help move the change along. After all, we are not asking for anything special. Just fair, accessable health care without discrimination or judgement.
I can not even imagine how families with children are able to deal with this. How are you all paying for this? Are you're employers understanding? Do you have social, spiritual, financial supports from organizations in your community or are you toughing it alone? If anyone is up to answering some of these questions, here or privately I would love to hear from you.
Thanks For listening to my RANT!! But Above All FAITH, HOPE, LOVE
Blessing and Peace to ALL RED DEER
Posts: 22 | From usa | Registered: Sep 2005
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Kara Tyson
Frequent Contributor (5K+ posts)
Member # 939
posted
Actually...we would believe it.
-------------------- Kara Tyson Lyme Disease Support Group Of Alabama--MobileChapter Posts: 6022 | From Mobile, AL | Registered: Apr 2001
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Morning MaFunk-
Sorry that you are in this boat. Most here can relate because they or a family member has been there.
I tried to go the insurance route in the beginning with about the same success as you have had.
Do find an llmd. It will make all the difference. Some don't take insurance. Mine has never taken HMOs and now requires everyone to pay at their appointment and getting re-imbursed by insurance. One company owes him $20,000 that is over 6 months old.
So while I pay the visit out of pocket, my labs and portion of my drugs are still covered.
posted
Thank you all for your responses, letting me know I'm not alone.
In response to Red Deer:
How am I paying for this? I'm trying through insurance. I'm also trying herbal medicine, which costs about $100 a month, and a gym membership (for sauna, steam room, swimming, etc.) which costs $40 a month). My fiance helps me with those costs.
I don't work. I can't. I'm too sick. I lost my jobs because of the illness. One of my employers was awesome and supportive, but I couldn't physically do it anymore. My other job fired me after I went MIA (I ended up in the hospital because of the Babesiosis).
I have some social support from my fiance, some family, and a few friends. Spiritually, I'm trying to get back into that. I just started going back to church this past Sunday. Financially, my fiance helps me out somewhat. But, mainly I rely on Social Services for the time being. I applied for SSI, and I'm waiting to be denied so I can fight it.
I do have an update for everybody, though:
I went to see a different doctor, just a mile from my home, and he seems very promising. One of the nurses in his office had Lyme Disease, too! He spent 2 hours with me, going over everything. I brought with me the paper written by Dr. BURRASCANO on Advanced Topics in Lyme Disease .The doctor actually spent time looking over it, and referring to it. He ordered lab work, including retesting me for Babesiosis to see if the treatment in April got rid of it. He's also testing me for all other co-infections, which no other doctor has done before.
I'm very hopeful. I'll let you know how this works out, and if it's successful, we may have a doctor who will know something about Lyme Disease and be willing to treat it in Jamestown, NY!!!
Posts: 37 | From Jamestown, NY | Registered: Oct 2005
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lymeloco
Unregistered
posted
I'm so sorry to hear your going through so much crap, but it is true, most of us have been there.
One neuro. I saw said your depressed. I said I know, that's what is bothering most, and if you looked at the info. I put on your chart you'd see I put depression!
He said, hmmm most people don't admit their depressed! Jerk!! I had my mri with leisons and a positive western blot, spect scan with decrease blood flow.
This was my fourth neuro.. and this one wanted to do more test, and I wouldn't!
I had a lumbar puncture which somehow got lost in the shuffle, and when I said that to this jerk, he said, those things happen!
That test was lost by another neuro. who had me waiting forever for results. I called the labs, and they said that test was sent out weeks ago!
I'm tired of all this b.s. and I'm tired of seeing others having to go through this!
They know exactly what they're saying. They just don't want to admit it, and loose business! Again, it's about money, ego, politics!
I wished you lived close by, because I have been having better days, and would give you a break somehow.
I am taking a break today, because I did a lot of cleaning yesterday, and I now listen to my body when it says it has had enough!
I had to take early retirement, and miss all my friends, and this place has helped a great deal in that respects.
Where would these doctors be without their patients? What income would they have? If I knew then what I know now...heads would be rolling!
With all that has happened in the past, I could've filed many a law suits, and my family thought I was nuts for not doing it.
I was too sick and too tired at the time, but now that I'm feeling better. I'm angry as hell at the medical establishment, and insurance companies!
We are here for you. Venting helps the healing process!
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Ma, It's awful what so many of us end up going through with Lyme before we're able to get adequate treatment. For me, being discounted was the worst -- ducks telling me I was fine when I was so clearly sick.
But I was glad to read the update you posted. Your last doctor's visit does sound promising. It was good thinking of you to take along a copy of Dr. B's protocol, too...and glad to hear he was open to considering it.
When I first started seeing a therapist bec of Lyme, she was completly unfamiliar with the disease but was open to learning.
The expense is bruising. I had initially searched for a LLMD who would accept my insurance then finally decided I just needed help. Period. I wanted someone who was Lyme smart and willing to listen. Thankfully, I live in an area that gave me several strong options.
Let us know about the test results when they come back. I'm glad you're feeling a little more hopeful!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
MA,
Hi. I'm so happy you found a doctor near you. Maybe another future LLMD. I hope so.
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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