posted
Hubby and I are still in shock and disbelief.
We thought we had found him a new LLMD -- will not mention the state.
Anyway we had a very good new patient appointment that was carried over into a 2nd day. But then communication seemed to stop. No response to multiple faxes and messages and emails over a couple of weeks.
Found out that the doc had consulted a colleague in regards to what she was allowed to do to help. We had asked if the doc could recommend IV meds and let our PCP write the scrips as had been done by another LLMD consultant and also a LLMD neuro in other states.
Finally had a phone conference with the new LLMD. Had been instructed by their lawyer not to communicate with us until they appeared before the medical review board. The colleague had apparently turned in the doc who had not even prescribed anything to hubby at that point. Plan after the new patient appointment was that the doc would write a report to be discussed at a future phone consult.
Anyway the new LLMD agreed to write scrips for symptom control meds but so far that has not happened so we aren't sure yet if we have a doc or not.
The medical board told the doc they could not write scrips for IV meds for tickborne diseases and they could not advise the PCP to write the scrips either. But it went much further. They were also instructed that they could not prescribe things such as IV vitamin C and IV magnesium. Basically all the things the IDSA guidelines list as not appropriate treatment for lyme and tickborne disease.
So now I really am playing doc as I was once accused by hubby's PCP. Hubby continues to respond to babs meds but for now I will be looking to the internet to order his meds because he does not have a doc who can prescribe. We do not want to discontinue treatment that actually seems to be trying to work for the 2 or 3 months or longer it will take to find another LLMD.
After a couple of months of aggressive babs treatment hubby told me that he was actually able to raise his arms above his head while in the shower and turn around a couple of times without getting dizzy. Has been a long time since he could do that.
The doc situation is beyond ridiculous as far as I am concerned. When hubby gets better we will both be spending a lot of time advocating for change.
Bea Seibert
P.S. The good news is that the LLMD called me today (Saturday) to let me know they had been having problems with emailing scrips to pharmacies for patients and that the symptom control meds had been called in.
So thankful that the doc is still willing to work with us within the limitations imposed by the medical board until we can find a more longterm solution.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
This is awful. my llmd got shut down but i had been a patient for a year. It was devastating. She was excellent. So sorry
Posts: 3905 | From USA | Registered: May 2007
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
what meds does he need that you cannot get. Are they IV meds or orals? Maybe someone on here has them to help you out
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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chiquita incognita
Unregistered
posted
Sounds like medical dictatorship, and that is unconstitutional, not just illegal.
This whole dictatorship system needs to be fought. In court! The power of the purse is key. Class action lawsuits get media attention and are more powerful than going it alone, and cost less....win/win...where there is a power of groups! My suggestion.
I think you can find patient advocacy services here: www.needymeds.org follow links
If that is not it pm me and I will go to the library and seek out the book where there is such an advocacy service listed. It's a resource book for lyme patients and you had better believe I will go the extra trouble! Could hardly be called that if it means fighting off these wolf fangs we are talking about...it will be my pleasure. Gotta muzzle those wolves! They have no right to growl out their orders----concerning your husband's own body and wellbeing. Send me a pm if you want the info and the library is only a few blocks away, no big deal. Good to get out of the house....WOOF!
I understand where you are coming from but unfortunately in this situation it would cause the LLMD more harm than good to complain to the medical board.
For now the LLMD has not done anything for which they can be censored or lose their medical license.
As long as the IDSA is in control then the medical boards can simply say that any treatment that does not follow those guidelines is outside the normal standard of care etc etc.
The only way to win is to get each state to pass laws allowing the LLMD's to prescribe long term antibiotics or to get a national law passed.
I wish there was a quick and easy solution, but eventually the truth will win out.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
we really have to be careful and protect them as much as we can
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
bea your mailbox is full
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
OMG, Bea---this is beyond terrible!! This is so out of hand, it's unreal!! I'm in shock. I'd like to know via PM what state or dr this is, if and when you get a chance. (I'm involved with advocacy, although I'm too sick to do what I'd like to do). But I might have an idea of who/where you might go from here.
The iron fist of the IDSA has a very long arm!! Wow!
I hope an answer emerges soon for you guys. Aren't the illnesses you both (through him) are enduring enough??!! Lord have mercy!
Posts: 3771 | From around | Registered: Mar 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
So sorry, Bea. Is there a way to get your husband a diagnosis for something that can be treated with the drugs he needs? Maybe the Lyme diagnosis is holding him back?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Bea, Dr. L. in Maryland is giving appointments for July from what I am hearing.
She had my friend on IV for 7 months.
Let me know if I can help you with doctors' names or anything!
Posts: 9931 | From Maryland | Registered: Dec 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
quote:Originally posted by lpkayak: we really have to be careful and protect them as much as we can
Doesn't seem to be helping given what I'm constantly hearing.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I have been worried about more LLMDs and what could happen to some of you who only have the support of your LLMD. It scares the you know what out of me.
I'm hoping The Truth about LYME & CO happens before you guys lose anymore lyme literate docs.
Our secrecy or lack of on lymenet has no huge bearing on what is happening. IMO The dirty dogs know the names of lyme literate doctors.
It's war on the medical front today. Under Our Skin has stirred the pot up. I seen another thread today about unknown lyme husband and wife.
Didn't know what hit them until their son moved out west with odd sx and found a doc with a brain.
Anyway some dum dum ID doc added his stupid comments and told how deadly overuse of abx can be.
Just wait we will be able to scream from the mountain top soon.
In the meantime Dr Bea, do what you gotta do for your loved ones. Keep on fighting what you know.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
sparkle's idea is a good one, if you could pull it off, that is. Might be hard to pull off, but is definitely worth looking into.
This is unreal. When the heck are enough people going to get wise and raise h___???!! The trouble is, by the time you're sick with Lyme, you're too sick to raise too much h____. Mighty convenient, isn't it?
Posts: 3771 | From around | Registered: Mar 2008
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ks90
Unregistered
posted
Dear, Seabert
While the truth will eventually get out, please don't just sit by bein' a wishin' and a hopin' for it.
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