posted
I've had a lot of non Lyme related issues so needed to see other specialists; spine; failing brand new TKR; gallbladder etc. Each one became downright mean when finding out why I'm on so many antibiotics. Just wanted to let you all know that I spend all my time and energy (don't have alot of strenth these days) in writing to each of these specialists who I believe truly do think they are right there next to God in knowing all things!
I explained how their total obsession with DISPROVING the existance of Chronic Lyme & Co's blinds them to even attempting to diagnose other serious medical problems. Asked them why they are so angry about Lyme. And how disgusting it is that for some unknown reason patient care is severely compromised because once they hear the word "Lyme" or the mention of TBI's they have no room in their brains to try to diagnose the problem at hand - even when not related to Lyme.
Asked them if they are still so angry that the state of MA legislated laws siding with LLMD's last summer that they are taking it out on any patients that come to them for help with other issues? etc., etc.
I burned all my bridges for these other health issues but it was worth it to finally stand up and let them know that their out of control distain for LLMD's and "the over diagnoses of Lyme" is quite obvious and shows how ignorant and "uneducated" they truly are. And someday they will have egg on their face when patients like myself either just die or end up hospitalized for the rest of their lives due to their inability to get past their anger with regards to the newer research on Bb bacteria.
Beagle thanks for listening, I am so friggen frustrated and giving up on other health issues for now.
Posts: 348 | From MA | Registered: Dec 2010
| IP: Logged |
posted
It is frustrating. I'm new to this, but it seems to me there is systemic corruption involved in the denialism. Think about it for minute. How many specialists within the medical establishment would become obsolete if the public were widely aware of how many cases of "we don't know" diagnoses like fibromyalgia, CFS, MS, ALS, arthritis, etc are actually Bb and co and could be treated by a general practitioner with antibiotics, antifungals, or antiparastic drugs?
How many pharmaceuticals currently on the market and in widespread use would become unmarketable if people knew these drugs were just treating the symptoms and not providing any hope for a cure?
"We don't know what's causing it" is a bogus line. They know exactly what causes "it", "it" just isn't as profitable to eliminate as "it" is to "treat" with a lifetime of medications that only alleviate the symptoms.
I saw someone mention the Tuskegee experiment in another thread. I'm not a big conspiracy theory person but sometimes I do wonder about all of this.
Posts: 156 | From Virginia | Registered: May 2011
| IP: Logged |
posted
Oh, there is definately corruption. At first I didn't believe it could be this bad, especially in the Northeast where Lyme began showing itself in the 70's. But now I have experienced it with so many "specialists"
So much disdain and uncontrolled anger seems be harbored by some of these doctors that they can't even hide it.
Question is what to do about it? I wish there was someone on this forum who is not as sick, maybe recovered or close to it who could write a letter (as is mentioned in another recent thread) and put it up on site in a way that we could all sign with our names and addresses - kind of like a petition works. Then send it off to state governors or the president or whoever someone more knowledgable on here thinks is best.
We are all easy to take advantage of because of our illness. Who can really do a lot with the constant brain fog, lightheadedness, severe flu like symptoms and others with neuro Lyme, who have been too affected by this disease to try to do anything. What better group of people to pretend don't exist than Lymies who are so sick that we cannot even fathom trying to fight back? Too busy trying to get better with zero help from medical community.
Posts: 348 | From MA | Registered: Dec 2010
| IP: Logged |
posted
Good for you Beagle. Just realize that because they are turning a blind eye sooner than later they or someone close to them will get this too since by denying it the spread of the disease is out of control.
I did the same thing at my local hospital. After the year of crappy treatment that I got I called and complained and they said they would get someone into educate about Lyme since I was fighting a life threatening infection and they told me I was nuts. Mind you they got our public health doctor but maybe someone will not get missed because of it. I`m in Canada where lyme is not even on the radar.
Posts: 131 | From ontario | Registered: Oct 2010
| IP: Logged |
posted
Good for you for standing up to them. I also bring them brochures - state and national, including those for doctors. You can PM me if you want to know more about the brochures and where to get them.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
It is very tiring and depressing to be trashed like that. And it does help to fight back, show some spirit when you can. Helps you survive such behavior even if it doesn't help change their minds.
I think at least part of their behavior is fear that they will somehow be dragged into the mess and have their careers damaged. That fear spills over onto patients.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Good for you!! I wish I was able to defend myself in an articulate way when confronted with an arrogant MD. It's hard enough to remember why I went there in the first place much less to verbalize anything after getting flustered by them.
Another thought, though... I wonder if part of this has to do with patients coming in with self-diagnoses? Whenever I've gone in and told a doctor I thought whatever I had was XYZ, I could see their hackles go up and the anger set in. I wonder what doctors talk about with each other in regards to that? They sure seem to get angry really quickly if you try to tell them what's what as opposed to them telling you.
So, if you're not only telling them you think you know better, but you're also telling them it's a controversial disease that you have, you've now got two strikes against you. Then, if you're already labeled a hypochondriac from all of your previous visits, you might as well turn around and go home at that point.
But, yeah, if we had a pre-printed letter or something we could fill out, sign, and send somewhere I think that would be great. I don't know how well online petitions work. Has anyone been involved with one?
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
| IP: Logged |
posted
@cheffer, you're in Canada and they don't think Lyme is a problem?? That's funny... it's like the ticks don't have passports or something to move across the border from the US. hahahahaha
Okay, sorry, not really funny, but it did make me giggle a little.
-------------------- IgM: [18++,31+++,34++,41++,83-93+] [39 IND] IgG: [41 IND] Positive according to IGeneX. Negative according to CDC. Negative for co-infections. Currently treating for Lyme, Bartonella, Babesia Posts: 225 | From Minnesota | Registered: May 2011
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I agree with lou...i think they have seen what has happened to other docs and don't want to get involved.
I know my primary doc is hot and cold when it comes to prescribing abx.
He is always concerned insurance will call him on the carpet. He says it is not a matter of if but when.
I read or listened to my LLMD a while back state that he believed it was because most docs are not educated about it.
When I first saw him, he said he felt like it was like the battle with syhlis (Sp?)
This doesn't mean I still don't get overly upset about not getting the help needed by the people who are supposed to help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
me thinks the letter may or may not be a good idea. in my case, i am in remission for six years and been through the mill, however, writing a letter and posting it nationally would not work. i am receive benefits from 3 insurance carriers and can not jeopardize those benefits. I can only say that is important to know and watch what you write on any forum. these forums are monitored by google and others and with just a simple search n google by name,your whole med history can be revealed to others, including insurance carriers. do a google search on your forum and hold on to your hat, you won't believe what comes up
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Good for you Beagle. What good were these doctors to your health and well being. ZERO
stymie, I'm past caring who I tick off and whoever wants to come for me, come on. I've had all I can take of the powers that be and every government service dept in my way.
I don't care who I tick off. Big Pharma could come after me and I would stand up and fight them with the truth.
Let me go to DC. I would speak before the senate, the house, the main man himself and speak nothing but the TRUTH about the crap I've been thru with insurance companies(not Medicare but corp insurance), long term disability, company, specilists doctors and the things that have been told to me that shows their ignorance.
People can talk about angry Americans....well I'm one angry lyme disease & co patient that has had enough.
I've been down this road for 12 1/2 yrs. I know my rights as a patient. I know my rights as a chronic lyme disease patient. I know more than a high percent of doctors in this great USA about lyme & co.
I've read some of the saddest, seen some of the crueliest remarks, and heard some of this STUPIDITY for long enough from the CDC, NIH, EPA, FDA, BIG PHARMA, National ID ducks, Yale and every other medical speciality group that have made us feel like losers.
We are not losers. We are the strongest group of survivers out there today fighting the establishment from every angle and so sick I really don't know how we do it sometimes.
Stymie, I'm glad you are better. Really happy you are in remission. Three cheers for our dental expert for many years.
I don't care who sees my medical history. Wait till they see my out of pocket expense in 12 yrs. My primary insurance and my secondary insurance(Medicare) pay out less than I do every year for 12 yrs.
I'm a cheap ill patient to both of them. But I've got proof of purchase on everything including my super duper model rife machine that was $6000 bucks.
I wouldn't sell my machine for a profit. It means too much to my life and will be with me forever. They can't come into my home and take it.
It's mine. It's FDA approved for pain. Man do I ever have pain. I also have a horse I treat with it. lol
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Had that new Lyme Immune ID blood test today. Supposed to transcend conventional antibody testing by assessing Borrelia specific T cell activation and cytokine production??? This done by Lyme Literate Doctor. Hope it's worth the money. Then straight to mainstream internist who wants me to stop antibiotics for a few weeks (again) to culture for Endocarditis. (Got symptoms of that now too.) The Irony is how the mainstream docs don't even have a clue that while they are dismissing dissemenated Lyme as junk science, they don't even know they are wanting to test me for Likely Lyme caused Endocarditis!! I refused to stop antibiotics because I became bedridden last time.
Ya think maybe just treat for Endocarditis??? Since treatment is IV antibiotics...which is what I need, right Doc Dave? Since every Elisa test I've had was positive, but reflux Blot done at Mayo negative. Picking ticks off myself almost daily over last 15 years, had the classic bullseye rash in 2008, right after a positive Elisa........fast forward to 2011 - too sick to function...joints and spine are falling apart, now symptoms of endocarditis? But Mayo CLinic said neg western blot so of course, makes perfect sense, can't be Lyme.
I feel like Alice in Wonderland!
Posts: 348 | From MA | Registered: Dec 2010
| IP: Logged |
posted
One thing I have told the MD ducks. If my family and I can catch lyme and coinfections in my backyard so can you, your family, friends... If you catch it, get sick and go to a doctor for treatment, may God have mercy on you, because you will hear what you have told me while you/family, friends suffer from no treatment.
Posts: 140 | From Illinois | Registered: Jul 2009
| IP: Logged |
posted
Lymetoo, yes! Iam hoping for endocarditis in order to get IV antibiotics thru insurance. But to confirm he must take cultures which means stopping antibiotics for 2 - 4 weeks. I just stopped antibiotics last month (for knee tap) but after 9th day was forced to resume because I was so sick no way I could get in the shower never mind get out to doc's for a culture.
Posts: 348 | From MA | Registered: Dec 2010
| IP: Logged |
daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
No one deserves to be treated like that..Ignorance!!!
I am so proud of you Beagle! Wooohooo!!! You rock!
May God lead you to the doctor(s) or clinic where you will get the help you need!
Posts: 2188 | From Oklahoma | Registered: May 2008
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i think of you a lot. i am off line in nh trying to sell house. much work. i have no answers but you can call me if you want someone to talk to sometime. i am resting a lot...exhausted in between trying to push thru. so can talk on phone .
i wish i could help. i am dealing with my brother here being sick with no med ins etc...
the whole lyme mess still sucks...
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic