MediTest
27 Apr 2018
Author
biohazard
Title

Call for help from Lyme MD

Body

http://lymemd.blogspot.comThis guy who has an excellent blog is asking for help. He's an MD in Maryland that has been treating and helping lyme patients (near the very Lyme epicenter). He is being reviewed and will likely be prohibited from treating lyme patients (because he uses multiple antibiotics, etc.).The blog is excellent for those of you who haven't seen it.

Comments

As we patients know, our prescribers are heroes. I read this - and have read his blog before - and know that some of us would never have survived without this protocol. Somehow, this way of thinking has to be turned around. I don't know how.  This keeps happening - here and in Canada.  Whatever or whoever tries to open the door gets squelched.

Rica 

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

While I'm all for helping this guy, and do hope I can find a way to, please, everyone, be cautious in what you say about your own treatment. Do not point a finger directly at your own physician unless you have their express permission to do so. Otherwise, you risk opening your physician up to the identical problems this guy is now experiencing. I'm not saying don't help. Quite the opposite. Just be careful how much information you share.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Mine is in the same boat as this fellow.  Under suspecion for 2 years now chart after chart subpoena'd.  I wrote a letter to my Governor about htis situation and the response I got was that Governor Gregoire is for evidence based medicine and does not support unproven therapies.............

 

"OK WHOSE evidence" as DW puts it???!!!   We all know who.Image removed.

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Thanks for alerting us, biohazard. I am from MD too and my endo dr just told me he has 2 friends who practice holistic medicine and prescribe CAP. He told one of them right now is under investigation b/c another dr filed a complaint with boards about his CAP treatment. Got to wonder if he was talking about the same dr.

There was another case in VA, when a rheumatologist was brought before boards for the same thing. She fought it off successfullt with the help of entire Ilads community and patients. I am going to do something.

Thanks MacK for warning, too. 

Nata.CAP Jan'08 to Dec'09 for arthritis. Doxy, Rif, Azith, Bactrim, Mino, Clarith, Flagyl, Amoxicillin. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

I think I need to clarify. I was in kind of a hurry when I posted the above.

I want to help.  I also know, if I use my real name, they can sift through my state's prescription records and find what I've been prescribed and by whom.   So, what to do?  

If I write a letter for this guy and sign my real name, I put my doctor on the spot and I'm not willing to do that.  If I don't write something for this doctor, I'm compromising my own personal ethics, which demand I help someone who has done nothing wrong and has undoubtedly saved quality of life, or even life itself, for many people. 

A quandary.  Suggestions are welcome.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I don't think states have any centralized system of prescription records, at the moment, except for narcotics prescriptions. Insurance companies have their own databases, of course, of what they've paid for, as do pharmacies -- but it would probably take something like a court order to get your records from private companies like that; it's not something a state medical board on a fishing expedition could easily do.

The state of Illinois has a patient/doctor/prescription database, starting this year, which ostensibly exists to prevent duplicate prescriptions from being dispensed.   I've no idea how it's administered, or by whom, but I've no interest in learning about it the hard way.

My feeling on HIPAA (which I deal with many times a week at work) and the government is akin to that old IRS/FBI adage: "Hi, I'm from the government and I'm here to help you".  Uh-huh, sure you are.  And once the genie is out of the bottle, through misbehavior or by accident, who is going to put it back in?   No, thank you.  (I'm not being paranoid; I'm being realistic. In a perfect world, no one could identify you. This is an imperfect and sometimes downright snarky world.)

I believe my letter for this LLMD would have to be signed, 'not my real name, so as to protect my physician from Machiavellian witch hunts such as this".

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

By the way, I hope everyone understands that I take doxy daily for my acne, azith for my chronic lung infections and flagyl for a rather embarrassing, recurring std.   That's my story and I'm sticking with it. Image removed.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I'll have a look at it tomorrow. I do recall one physician commenting to me that the state is now able to see how much he prescribes of everything, not just narcotics.

I'm quite serious; I'm not about to be convinced the government has my (or my doctor's) best interests at heart.  I will not be fronting any personal information unless my doctor tells me it's okay to put the doctor's info out there for public consumption.

In the meantime, does anyone have any positive suggestions on how we CAN help the good doctor without damaging our own situations?   I've had two pm's from people who have some knowledge of this doc and he could easily be treating a few of us who just aren't advertising it. 

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Standing up for someone and making your opinion heard, while remaining anonymous, is about as easy as making water that isn't wet. I'm afraid it's decision time.

That said, it's unclear to me how people outside of Maryland could help in any significant way. A state legislator in Maryland (those being the people LymeMD suggests contacting) isn't going to pay much heed to a phone call from, say, Oregon. It hasn't gotten to the stage where LymeMD needs help with legal bills. Also, he seems to have seriously edited his post, such that none of the original text that was quoted here remains; in place of the calls for help, there is now only a philosophical discussion. (I'm supposing that he still needs help, but decided that some of his language was a bit overly inflammatory. Even so, it makes it harder to support him.)

Well, it may be decision time, but I'll not make that decision for my physician.  Leaving a trail of breadcrumbs to a prescribing physician is a problem just waiting to happen.  Dozens of current patients, who are being helped immensely by the protocol, not to mention the practice and the medical license, are all at stake.

I can write a letter to help by means of a pseudonym.  I can also send untraceable money to help with the attorney bills.  And, I'll alert my doctor, who can make the decision I have no right to make.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Wow... this is scarey... having something like this (the Illinois Drug Database)  on the internet

Jeanneroz

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

HIPAA regulations http://en.wikipedia.org/wiki/HIPAA would prohibit access to medical records like this. The privacy clauses are pretty strict now, fortunately. The ID complaints come from when they get a new patient who reports having been treated by multiple antibiotics, i.e. by patients who are unhappy with the treatment or seek a second opinion.

The end result of this witch hunt will be people self-treating, with all the problems inherent in that. 

The ID Society claims to be openly reviewing their Lymes Disease guidelines and is asking for public input. If you have a cogent, science oriented argument to make, go at it. http://www.idsociety.org/Content.aspx?id=13352

Red

Mack, you poor thing!    Perhaps this is all just due to a hyperactive immune system.   Surely you should be on a TNF-a inhibitor like Remicade or something.  

Check with your doctor.   I'm sure he'll have no qualms about prescribing it for you...Image removed.

 

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

The IDSA guidelines are "under review" but by a panel which excluded physicians who earn more than $10,000 a year treating Lyme patients.  Which means basically Lyme experts were excluded from the panel:

http://www.prweb.com/releases/2009/02/prweb1941044.htm

The chairperson of the 'review panel' was a past president of the IDSA.  A list of the other panelists can be found here

IMO, the IDSA really needs to be investigated by all state's Attorney Generals at this point - not just Connecticut's.  Maybe that would once and for all put an end to these witch hunts.

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

Here's a link to the Connecticut Attorney General's Office

http://www.ct.gov/ag/cwp/view.asp?A=2341&Q=414290

 It's from May 2008, looks like it was posted on the website Jan 29 of this year...

 

"Connecticut Attorney General's Office

Press Release

Attorney General's Investigation Reveals Flawed Lyme Disease Guideline Process, IDSA Agrees To Reassess Guidelines, Install Independent Arbiter

May 1, 2008

Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter."

 

Doxy 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFS since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

That's strange, because it has been there on their website for quite awhile, I thought...?  Maybe they just recently updated it?

Anyway - the 'review panel' was the end result of the Connecticut Attorney General's Investigation, so I don't think he is really involved in the process anymore.

I'm thinking Maryland, Texas, North Carolina, and any other states who have had doctors (and researchers) harrassed and driven out of their state - the Attorney General's of those states need to be made aware (if they aren't already) of the witch hunts that are taking place in their states because of the IDSA.

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

KellyAna, We have the situation of State Rights in the US.  Each state is a Sovereign State, a state which administers its own government, and is not dependent upon, or subject to, another power.   And each state has an individual BoardOfMedicine, so each state gets to do it over and over again for themselves. 

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I agree we need to write our congressmen, etc, and attack this at the federal level.  But in the meantime if more states like Connecticut would strengthen their stance against the IDSA it would at least give some temporary protection for these doctors to allow them to continue treating chronically ill patients.

Maybe they are still going after Connecticut doctors, but just my opinion they are probably less likely to do so at this point.

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

It is scary - absolutely!  So scary in fact that I have now removed my doctor's name from my personal info.

I can not believe they are still doing this.  Please Maryland go after these guys, do not allow them to decide how your doctors practice medicine!  They are a society for God's sake how in the world and who gave them this much power?!

Sheesh!

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07. 

Surely, his counsel advised him?

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Here is one way to push for a change in what is happening - at the federal level - by getting our Congressmen and women to put some pressure on Congressman Frank Pallone who has held up Lyme bill HR741 in committee - for going on two years now.  

I see no reason why you would even have to use your name when calling some of these legislators.  I did call Congressman Frank Wolf's (VA) office to talk about the bill, and nobody even asked me for my name:

http://lymerights.org/html/lda_call_to_action.html

Kelly

Diagnosed FMS Feb '07.  2x/day: 600 mg NAC, 100 mg Doxy, 500 mg Amoxicillin, 2000 iu Vit. D.  450 mg Valcyte.  250 mg Azi M/W/F.  500 mg 375 mg Flagyl pulses every 3-4 weeks.  Started CAP June '07.