IV Rocephin update and LLMD losing her practice?

Previous threads sharing my IV installation and previous updates:

Beginning of IV decision
www.healingwell.com/community/default.aspx?f=30&m=3169409

Installation
www.healingwell.com/community/default.aspx?f=30&m=3233665

I continue to have problems with my port. Or rather, the nurse home health care company that my insurance approved continues to send nurses who have trouble accessing my port every week. Nurses seem OK or good but they are part time and I have a different nurse every week and only a handful are experienced with ports, or with my particular port and every other week I have problems.

So we have finally been able to troubleshoot enough that they have accessed me consistently, therefore I have been able to have over 4 weeks of consistent treatment in a row. I didn't realize this before but the inconsistency has really compromised my treatment and the consistency might be causing additional problems...

But several other problems have come up:

My viral load has crept back up and is causing a lot of extra problems. I've been on high doses of antivirals and tried to get off them while trying to transition to a natural antiviral, which I overdosed on. It's been about 2 months of hell but finally recovering and I am now back on the harsh antivirals, daily.

I simply cannot keep up w/ detoxing. My brain has become so polluted, I can't remember my infusions, protocol, detox regimen, or to eat or do other things. I couldn't remember where my post office was yesterday. I'm losing ground.

Had my LLMD appt today and asked if I could take a one month break. Was told that while some sx have improved on Rocephin, some new sx I'm experiencing indicate lyme is flaring and she doesn't think it's a good idea to stop altogether, as my immune system might crash w/out support. Discussing a lower dose, fewer infusions per week, and shifting from Rocephin to something else (I asked about Invanz, thx to Lymemomx2). She's conferring w/ another LLMD and will get back to me.

Also, found out that she is having severe financial problems. She's a nonprofit and relies on funding, which hasn't been enough to function since Feb. Also, she was sued for malpractice awhile back and the settlement just came through and now has to follow up w/ courses at the local university, specific training, and has to pay to have another MD support her patient care for a period of time, costing a couple hundred thousand dollars, which she doesn't have. In fact, she lost the case because she could not fight the malpractice suit w/ a team of expensive lawyers, as another LLMD did previously out here in CA (despite legislation we have to protect alternative treatment… because that LLMD could afford the right legal team). Yet another rare MD who is healing lives being ruined by ignorance, malfeasance, collusion, and the criminal activities of the IDSA.

So, I may lose my LLMD in a matter of weeks. And I no longer have the luxury of my 60 minute appts, which were never long enough. I have to split them up so that she can see more patients and recover more fees and hopefully keep their doors open.

Overall, a very tough day.

p

Post Edited (Pirouette) : 5/20/2015 7:59:54 PM (GMT-6)

Pirouette,

First, I'm so sorry you're going through all this! I have not had any IV experience, but I wish you the best on that. I hope you get it all sorted out.

Second, oh my goodness!!!!!! We have the same LLMD and I have been struggling over this whole issue! Feel free to email me so we can strategize on what to do to help. I don't want to lose them. I love everyone there! This craziness has to stop. I had no idea that you're in CA.

It's so good to finally know someone else who has the same doc. Did they have a status update for you? The last I heard is that she got a 60 day extension. It's just AWFUL! She's such a good person. Everyone there is great. I don't want to change doctors. :((

I'm so sorry you had such a bad day. Hang in there! Sending you a big HUG!

Pirouette,

It is so sad. She can help so many more people if she can keep her practice. It is also very stressful for patients like you and me-not knowing if we will be able to attend our next appointment and have continuity of care. I want to do what I can to help. I truly hope she can continue to practice.

I'm not sure if you are on MP's Lyme support email list. That is how I heard. I had no idea that she was going through all this. If you don't have her email, I would be happy to send it to you. They recently did hold a fund raiser for her. She spoke about Methylation. MP is putting together an electronic version of the talk. I plan to buy it when it is finished. We can certainly look into any other opportunities to help!

I had to recently move to Nor Cal. So, I'm staying up North for right now. However, I will do whatever I can to help. I'm still treating with her because I have been so happy with my care and everyone in the office.

I forwarded MP's email to the local Lyme support group. I also emailed Lymedisease.org. I hope we can rally enough support to keep her in practice! It would be such a shame to lose a great LLMD.

Me too! I will forward her email to you.

Let me know if you have any ideas to help her out. :)

I agree Traveler! I wish she had been able to fight it in the first place. Maybe they would have applied the looser standard under California law instead of the IDSA standard.

Now, she's in a bad position of having to come up with a lot of money or lose her practice. If she loses her practice, she won't get to help a ton more people. If she stays, she is going to have to fight an uphill battle. But she's a fighter! She would not be here if she weren't. She truly cares about helping people get better.

" I think her "overseer" is another LLMD, who has a solid reputation."

That would be awesome!!! I surely hope so! Otherwise, to have a ID doc overseeing her would completely restrict her from doing what she knows needs to be done - like treating people with chronic Lyme, giving them more than 30 - 60 days of treatments and more.

I know I'm preachin' to the choir here, sorry! I worry about all of this, especially since Cal is supposed to "have it together" with LLMD's and treating Lyme!!