I started back on IV rocephin yesterday. Coming down from a 5 day herx after one week of biaxin and omnicef. I couldn't tolerate the orals well because I had so much nausea and vomiting despite taking anti-nausea meds.
So far, I'm doing well with the IV rocephin as I did the first go-around last May. My insurance company will only cover 4 weeks worth of IV meds for Lyme disease. My LLMD of course wants more than that.
I checked other insurance companies who recently changed their policy on the duration of IV treatment for Lyme. I'm going to ask my LLMD to speak with the medical director at my insurance company to attempt at authorizing more than 4 weeks.
The medical director stated the reason he won't authorize it for me is because any amount of time after 4 weeks is "experimental". He obviously is not up to speed with Lyme disease.
Get a laugh out of this as well.....my homecare RN walked in yesterday and said "Did the cold weather make the Lymes disease come back?" Weather causing Lyme and "Lymes". Wow, its scarey when you know more about this nasty disease than our doctors and nurses.
I happen to be an RN and I will admit that before getting ill, I really didn't have a full understanding of Lyme. But I did learn about it just as the rest of the medical community should.
It is amazing how little this disease is known about. I want to desperatly make a change about it, I just don't know how to get involved. I educate every nurse and doctor I speak with during work.
Every single one of them says "Oh, I didn't have a clue". Very scarey to know these people actually treat Lyme disease !!!
Hope everyone is doing well..........Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Kelly, you're in the northeast where it is more known there is lyme & company. I'm in KY and we don't have lyme in KY. for sure. Just ask the majority of medical experts in the area. lol
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Yup. That's the norm. Some of the WORST offenders are infectious disease doctors, who are supposed to be specialists in it!!! Glad you're an RN -- you can help make a difference!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
If your Providers don't think they have "Lymes" in KY... try AZ! Most of the state are transplants... many from CA. Might be important to know about the fairly high incidence of Lyme in CA???
Posts: 70 | From AZ | Registered: Sep 2007
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bettyg
Unregistered
posted
kelly, it really stinks doesn't it?
since you are a RN, please go to ACTIVISM and see my post there about talking to CHRIS DODD AND FORMER PRES. BILL CLINTON about lyme disease.
is MARYLAND in their early primary states of voting for a 08 presidencial candidate? IF YES, go to as many LOCAL town hall meetings where they talk! be prepared with what you want to say; hand them a letter about YOUR situation, etc.
chris dodd wrote the senate verson of LYME DISEASE research/fundng bill; house wrote their verson.
sponsor DODD;
HILLARY, & OBAMA have signed the bill as CO-SPONSORS
NO republicans or other democrates have signed on as co-sponsors to SENATE OR HOUSE VERSION! it's a start of GETTING IN THEIR FACES! best wishes!
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I'm in New Hampshire....about 2 hours even from Lyme, CT and trust me...even HERE they don't know about lyme. It's scary! If it's this bad when it's right under their noses, I can't even imagine what all of you are going through in places that "don't have lyme". Geesh!
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Peacesoul
Unregistered
posted
why do people keep ripping on the medical community?! Listen, dr's and nurses are human. They learn and know what they know. They cannot possibly know everything about ever illness out there. They learn like we do. We have the time to research our illness. Dr's don't have time to research and learn as much as we would like. Give them a break. If you have the knowledge, share it with them. I've educated all my dr's on lyme and they were truly grateful. Use your energy to stop diss'ing the dr's and start using your energy to educate them. I know it's frustrating, but they are human! I've been in my profession for over 20 yrs and still learn new info on it daily!
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Until I was diagnosed properly, the physicians I encountered actually refused to listen to me and my suspicion of Lyme disease.
I was very ill neurologically for a long time without knowing what was happening to me. Diagnosed with stress, MS, and many more.
It is not only a few physicians across the board who are not knowledgeable, it is many many many. If I were a physician and my patient presented with Lyme symptoms but I was not familiar with it, I WOULD RESEARCH IT !!
Physicians are expected to keep up with the changes in healthcare and the information regarding diseases, diagnosis and treament. I write this information today based on my own experience as an RN working in a very large well-known hospital here in Baltimore.
The physicians and nurses (and I know a lot of them at work and in the communtity) do not know or appear to care to know about Lyme. Again, if a professional medical person doesn't know about Lyme, they should say they don't know and not attempt to diagnose or treat the illness. That is the main problem.
Kelly
Posts: 64 | From Maryland | Registered: Oct 2006
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posted
Not to mention that Lyme disease is a growing disease here in Maryland!! If an illness is becoming popular and more patients start presenting with the symptoms, physicians should get with the program and research it
Posts: 64 | From Maryland | Registered: Oct 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Peacesoul, do you know how many times I have tried to talk to doctors about Lyme disease and got the door slammed in my face?
Even if they do "research" - as they did when I was hospitalized in September - they only research the IDSA point of view!
I've had too many bad experiences of arrogance, being kicked out of practices, being told I'm crazy, etc. to have much respect, sorry.
I've spent plenty of much-needed energy begging for help and got nothing and nowhere in return.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I have medical professionals in my family, and I agree, that they cannot be expected to know everything about every disease. Medicine is so vast.
However, my problem is with the doctors who are not open or refuse to learn about a disease when they have patient who is suffering.
I saw my regular general practitioner just the other day while I continue to try and treat my Lyme. She gave me a few weeks of Doxycylcline about four months ago when the ordeal started -- but I haven't really seen her since figuring it would be worthless anyway.
But I had to go to her because my LLMD and I are looking at doing IV Rocephin, and I need her assistance getting a PICC line.
I was shocked at how she treated me. Not only did she refuse to participate in any way in my treatment, but she was hostile and rude. Basically, she was trying to get rid of me so she wouldn't have to deal with it.
She said the Doxycycline was all the treatment I needed -- even without examining me or asking me about my symptoms. I asked her right there how could she know I didn't need further treatment not knowing any of my symptoms or what has been happening to me in the last three months.
She then said that she follows the infectious disease community's guidelines and that's all she is willing to do. She told me she has a "couple" of other patients with Lyme and that the symptoms often persist after antibiotic treatment.
I told that at the very least she is telling these patients that many in the medical community disagree with the standard treatment if they want to get second opinions.
My check out papers said "follow-up visit for Lyme's disease."
I've also seen an infectious disease doctor and a neurologist. They both told me everything was in my mind as well and to end treatment.
I'm beginning to get a sense on how many Lyme patients are treated. Mainstream medicine just does not really want to deal with Lyme in a lot of cases.
This is what I have a problem with. Doctors not taking this seriously when so many people are suffering thinking a few weeks of antibiotics is always the cure. Doctors who aren't supportive of a treatment protocol the patient is comfortable with and the patient wants to pursue. Doctors who are too lazy to learn about a new disease when they have an infected patient.
Posts: 28 | From Northern Virginia | Registered: Oct 2007
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Peacesoul
Unregistered
posted
quote:Originally posted by lymeladyinNY: Peacesoul, do you know how many times I have tried to talk to doctors about Lyme disease and got the door slammed in my face?
Even if they do "research" - as they did when I was hospitalized in September - they only research the IDSA point of view!
I've had too many bad experiences of arrogance, being kicked out of practices, being told I'm crazy, etc. to have much respect, sorry.
I've spent plenty of much-needed energy begging for help and got nothing and nowhere in return.
Probably as many times as I did?
I was sick for 13 yrs and like many here and many people with "mystery illness", I've seen over 22 dr's. No one had any answers for me. I was told I had CFS and last April, I was dx with Lupus. I talked about possible lyme with both my Fam Dr and my Rheum and both had ZERO knowledge about lyme. I did my own research (again like many here) and when I sent my blood on my own to Igenex, it came back with lyme bands, I found an LLMD and then went to see both my GP and my rheum with my newfound knowlege. Actually, my LLMD is in the US and I'm in Canada and I need to be treated by a Canadian Dr, well my rheum is now listening and is treating me. When I first brought up Lyme to him, he was arrogant and SO COLD when I first went to him, but now he's on board. I email him all kinds of info and he's also trying to get his colleagues to listen about lyme. He's the head of the Lupus clinic at the largest hosp in Montreal. Yeah he knew nothing, so what....you make them listen. Dr's who don't want to listen, well you get rid of those ones. In the 13 yrs I've been sick, not one Dr ever shunned me or looked at me like I was crazy.
Again, they are human and not Gods. I think the laymen expects TOO much from dr's. Fact is, we (lymies) know more about lyme than 99.9% of the medical community, so we have to take a stand and tell everyone everything we know. If they laugh, then so be it. The medical community will catch up to us one day, but it's up to US to help them get there :-) Moaning and complaing about how dr's are idiots and don't listen will NOT get the word out. It's all in the approach :-)
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Peacesoul
Unregistered
posted
By the way, Dr's who refuse to treat are also afraid of being scutinized by a medical board. Keep that in mind. My Rheum is worried he will be questioned about all the meds he's giving me. There has to be an understanding on both sides. Theirs and ours
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Peacesoul, I'm sorry if it offends you that some of us rip the medical community. We've been down a long hard road. Many have listened to what a doctor told them years ago and have paid dearly for it.
I for one have been very blessed with a PCP who from my first visit in July '99 and 10 days of this flu-like illness from hell, called it possible lyme disease. He was from Rhode Island before coming to KY.
He knew enough about lyme to see my sx and treat for lyme. He just didn't realize that several months before when I came to him about pain in my knees coming and going, that it was the first sx of lyme for me. He sent me to ID doc and rhemie doc and I got stupid and laughs at the PCP suspecting lyme in KY.
So he thought 2+ months of many combos of doxy & company and should kill the lyme and it didn't. So he tested me for Epstein Barr Virus and I was positive. So he said it's not lyme after all.
Two months later with no abx and I had over 40 sx of lyme & company. He put me back on abx.
That great doctor has been my support since '98. I traveled 8 hours one way for a LLMD, who understood the illness. I called one ID docs office in city and left 4 messages begging them to help me with apparent chronic lyme in Jan '00 and they never called me back. Ignored my crying pleading for help.
So peacesoul, my jabbing and joking of some medical community is deep.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Greatcod
Unregistered
posted
What is tragic is not that they don't know about Lyme, or don't want to know. Most medical people, but certainly not all, are decent folks. The tragedy is that they only know and believe the orthodox Steere-IDSA line, as lymeladyinNY said. The Steere-IDSA view is published in the leading medical journals, and is taught in Grand Rounds at the local hospitals. When they or a family memeberr or close friend gets bit, they delve deeper into other points of view. Even the IDSA per se is not at fault, not all 8000 of them. It is the small number of doctors, lead by Wormser, who made up the IDSA Lyme panel that are to blame. The damage they have done, and continue to do, is almost beyond belief.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I think that eventually the medical community will have to learn about Lyme disease.
It is my very humble opinion that there are millions of Lyme infected people
Walking around right now who have either been mis-diagnosed medically or mentally.
I guess I should feel better that the ducks in Louisiana don't get Lyme either.
Especially since Lyme is more recognized in the North East.
BTW, my sister is a RN, who despite repeated gentle reminders still calls
My family's disease Lymes! AAARRRRRGGGGGHHHHHH!
Hugs to all,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Peacesoul
Unregistered
posted
Pam, it doesn't offend me in the least. But if we are going to be pioneers in lyme, we need to toughen up and stop placing blame on the medical community, especially dr's. There are "bad apples" in ever profession.
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i agree, focus the energy on changing the sitation or circumstance.
i think we can all agree its messed up.
but, WE are the only ones who are ever going to change it.
even the president of the usa suffers w LD, and still, all the controversy persists.
lets all use our energy, and focus it on things we can change.
ps, i understand venting, and the need to. i often times do the same thing. i wish we could all connect, harness all our energy, and use it to change the world regarding ld.
will that ever happen?
be well
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Well said !!!
Posts: 64 | From Maryland | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Peacesoul, I agree with teaching others. I've taught my PCP much more than he knew 7+ yrs ago. Probably more than he wanted to know. lol No, we have a great patient/doctor relationship. I've referred about 20 friends, family, acquaintances, patients to him and they all like him also.
I was the first known lyme patient for two alternative physical therapists, two healing hands massage therapists, acupunturists, naturopath, chiro muscle tester(he had worked on one early stage lyme and nipped it in the bud quickly), working on educating my gastro doc now.
All of these people know alot about lyme & company now. These healers have been apart of my life since '99. I've helped them, they've helped me. I will continue to educate any others. Oh, yeah I have a new eye doctor that just started his education on lyme & company last Friday.
I call this a journey. My journey is to help many including family, friends and medical community understand. I might be their first, but I guarentee I won't be their last.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Peaceful Soul,
The world would be a better place if we could find doctors that WANTED to learn from us or take our symptoms seriously. But it's the diamond in the rough that will even WANT to learn.
When I was to the point of neurological issues that our PCP thought looked like a stroke, and when the doctor found it wasn't a stroke, he felt it all had to be in my head. My husband asked him to run more extensive lyme testing.
He refused by saying the Elisa was negative. He said he is the doctor and that his wife is obviously just crazy after years of this and to stop talking about lyme testing. THEN a few days later, my husband got a certified letter in the mail saying that he was canceling my husbands physical and dropping our family from his medical practice because it's obvious we don't trust his medical judgement.
Two weeks later, I tested positive for lyme through Igenex. And yet this doctor STILL refuses to accept this and said that if I feel a need to sneak off in back alleys to get these Igenex tests run, he can't stop me, but it's insane.
Trust me....my experience with this doctor is not all that usual. When we can actually FIND a doctor that will take us seriously, we have to latch on to them and it's THAT type of doctor that will be VERY opened to learning.
But the majority are NOT opened to learning and have egos to boot. Did you see any of the doctors from the Dr. Jone's case that were gunning for him? Look into that and perhaps you will understand the way most of the medical system will NOT budge and they don't want some layman teaching then anything because what they learned in medical school is all they will listen to. Then will start preaching the New England Journal of Medicine.
But you are a very lucky person if you have found doctors that will listen and be opened to learning. I FINALLY did as well, BUT I sure went through many more that were the opposite so human or not....sometimes it's better to say "Yes, I'm human and I just don't know" instead of giving us something like steroids that cripple us if we have lyme. What happened to "do no harm"?
Sorry...I'm another one totally frustrated with the medical system and hearing that others have been through worse than I have with them breaks my heart. Count your blessings you found the doctors you did.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Peacesoul
Unregistered
posted
Cathy, it's certainly a slap in the face that your dr reacted that way. He sounds like a jerk and probably scared of a disease he knows nothing about. I'm not sure if I got lucky or not, These dr's I see have been my dr's for 13 yrs. My PCP was a dr I met in the ER 13 yrs ago when I first got sick. She took me on as a patient and has been with me through it all. She actually refused to treat me for lyme when I found out I had it and I totally respected her decision. She wasn't rude with me but was honest that she was nervous to treat something she knew nothing about. My Rheum, well I think he got on-board not knowing the full effect, but he's stuck with me.
The frustration your feeling towards the medical community will only put the "fight" in you to keep up this cause. I know when I "fail", I strive to succeed. Like I said, Dr's are human and in reality, humans most of the time will disappoint us.
It's up to us, the lyme sufferes, to keep up the cause and to explain to everyone and anyone who will listen..even if it makes us look fanatical.
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tailz
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posted
The ID doctor said to me, "Your symptoms are not consistent with Lyme. I see no reason to give you antibiotics." I think I had checked off every symptom with the exception of 'enlarged prostate'. Which symptom didn't I have?
A week later I got my positive from another doc.
The ID doctor made me wait 3 months to even walk through the door (with Lyme, babs, and probably ehrlichia), and he didn't run a single test on me. Not a single one.
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Peacesoul, I understand what you're saying, but I would like to add a few more cents to the discussion.
Doctors are supposed to be in the business to HELP people or refer to HELPFUL people, not save their own butts.
Lots of doctors know enough about Lyme to know that they don't WANT to treat it!
It's my belief that many "ignorant" doctors know the truth about Lyme disease but are afraid of losing their licenses by treating.
They take the safe route, compromising their ethics and morality.
I've met far more doctors in this category than in the "willing to listen and learn" category.
My life has been ruined by doctors more willing to save themselves than to help a Lyme victim.
I've been told to stop my "behavior" when screaming in agony, told I'd be taken to the parking lot if I wasn't quiet, and then overdosed with narcotics to shut me up.
I know this because my sister, an RN, came to the emergency room after they'd drugged me to find me unconscious and barely breathing.
I have been given shoulder shrugs when I was paralyzed from the neck down, told postpartum depression was causing all my trouble, have been kicked out of a family practice for not accepting psychological help for my "non-existent" disease, and told I need electric shock therapy.
I have been left writhing in pain for hours in ERs because they don't believe I'm in pain. I've been kicked out of the hospital too early because they couldn't find a cause for my meningitis-like symptoms. I was told to never return.
I've been told that "nobody has body spasms like you do." I've been told that I don't want to take care of my children so I'm faking my illness.
The list goes on. The point is, I CANNOT respect these people. I've rarely been received with ANY compassion - not even a glimpse.
I have a doctor now, an internist, who was actually trying to help her patients. She bucked the system so often that she got kicked out of the local medical association.
She was told she would not be allowed to practice within five miles of my city. She now has a clinic out in the country and hundreds of people followed her.
I learned of her after I'd been kicked out of the family practice. This lady has been there for me through all of my troubles, advocating for decent treatment for me during my occasional hospital stays and helping my LLMD as much as possible.
She doesn't treat my Lyme but she BELIEVES and RESPECTS me. That's all I ask for.
She has always been willing to be truthful about her knowledge of chronic Lyme. She says she doesn't know enough. She said internists are more and more following IDSA guidelines.
And yet, she hasn't kicked me out, insulted me, told me I'm crazy, etc. She just says to see my specialist about Lyme, and that's what I do.
Now THAT'S a classy lady and a classy doctor. And it's so easy for her to be that way, too. And her license is not in jeopardy.
Thanks for listening.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Greetings All, I am a victim of lyme. I have never had the disease personally, however i have fallen in love with a woman who has been infected for the past 2 1/2 years. Wow, what a ride!
I feel compelled to share my opinion on this topic as i have been by "the love of my life" (TLOML) side since she was diagnosed. She was diagnosed with MS, Stress, West Nile Virus, and still waiting on the test results for "Venezuelan Beaver Flu...ha ha
I agree with Peacesoul in that we can't expect dr's to be all knowing. That said, I do expect anyone in the medical profession to know and acknowledge what their limitations are and either refer to a knowledgable authority or get smart on it themselves.
"I don't know" is a phrase that the medical community should embrace. My PCP isn't afraid of that phrase and will then take the time to educate himself so he can be the resource he feels i should expect him to be.
Medicine is as much an art form as it is a science. There is a Large amount of trial and error when treating late stage lyme. It seems to be based on individual physiology as it is on the disease itself.
In conclusion, I firmly believe that dr's are "body mechanics". That means that patients must be firm and take the lead when it comes to treament. Having lived thru a similar nightmare as many of you, I think we need to be aggressive with the medical community in hopes to minimize the suffering this disease is causing.
John
"Know your enemy" Tsun Tsu - The Art of War
Posts: 2 | From Owings Mills, MD | Registered: Dec 2007
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