Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
My appt is Monday for follow up after being on doxy and Buhner for 3 months.
I've been doing ok and can't see a reason to spend $250 for a visit plus a 2 hour trip each way.
I have one refill on doxy which will take me through 45 days (mid-Oct)
The nurse I talked to today said the next available appt is in Nov. She strongly urged me to come on Monday since there would be a gap before I could see her.
My idea is to see if PCP will take over prescription so I have appt with him tomorrow.
If he says no, then I probably need to go see LLMD. But I'm kind upset that LLMD is making me do this. I do understand about having to be seen before getting prescription meds. But seems the time could be extended.
Anyone ever have luck with their PCP doing this sort of thing? Mine is sympathetic to Lyme, but not sure if he agrees to long term abx. for it.
But teenagers are on it longterm for acne all the time!
Posts: 1302 | From USA | Registered: Dec 2002
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please keep the appointment.
Your PCP does not have the experience or training. It's not just about filling a prescription. You may be due for an additional or different medicine. And only the LLMD knows how to determine that.
Your LLMD needs to SEE you in person to properly assess progress or where things need to be changed.
If the only Rx you are taking is doxycycline, you will likely be getting that protocol changed. If you want to get past this, you need an expert.
As the next appointment is not until November, if you must skip one, it might be best to have that option during icy and snowy weather. If you see the LLMD now and have a good discussion about future options, you may be able to stretch these out from here if you continue to do so well.
Also, whether you go or not, please do let your LLMD know of your experience with the support measures. That helps everyone. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Keebler, thanks so much for your thoughts on this.
I'm wondering if this would make a difference in your opinion.
I'm remembering that she said that it was Buhner's opinion that doxy should continue longterm along with his herbs.
I've gone the whole abx route for 18 months in 2006 when I was a new patient of hers. I sort of gave up on treatment since I'm not seriously sick and the abx helped but sure didn't make me well.
This winter I suddenly had a rash, severe headache and fatigue and felt it might be bart.
She agreed and we started antibiotics again. The rash went away but not major improvement. Then after 3 months of rotating abx at my last visit she was excited about Buhner + doxy, but had changed her mind that the rash was bart.
But, she said that the Buhner protocol would improve my immune system and the co-s wouldn't be an issue.
I was skeptical about herbs, but I have improved these last 3 months.
So, my point is that my understanding was that I was to be on doxy + herbs for 1 year plus.
So I don't understand why she needs to see me so soon. I tried for a phone consult instead, but the nurse said no.
I don't think I have faith in abx anymore.
When I was diagnosed (too late) in 1993, my pcp put me on doxy for 1 month and I got well, then, relapsed, then 6 months of doxy and I got well. and a few years later symptoms came back.
Finally saw LLMD in 2006.
So it seems I do respond to doxy. But of course Iunderstand about cyst forms, l-forms, etc. But abx didn't help that in 18 months of treatment.
I know the decision is mine to make, but do appreciate your thoughts.
Posts: 1302 | From USA | Registered: Dec 2002
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Don't skip the appt. 3months is a long time between follow-ups. A good doctor would want to see you on a regular basis before prescribing/refilling any medications.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My LLMD required 3 or 4 months and I had to fly there and spend the night in a hotel, then fly home the next day. Your LLMD may want to change your prescription. If you want to continue LLMD treatment, you need to go. Going in person every three months when you're only 2 hours away isn't unreasonable.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Ack! I had to go every month for $250.00. Ouch Also my LLMD would not renew some scripts until after I had bloodwork done. Is their labwork involved?
Posts: 365 | From Sylvania | Registered: Aug 2008
| IP: Logged |
posted
I go every three months at $350 per visit. I agree with Keebler.
When I think of the thousands and thousands of dollars we have spent over the past 22 years I consider this a bargain!
We live on social security and whatever my husband can earn with his consulting. But the doctor and abx get top priority.
I can't afford many supplements. And now we are faced with the fact that he is getting worse and probably needs to be seen and medicated. The VA won't help him and they give him the classic runaround.
Our kids suggest he see our local doctor and ask him to follow my lead with the same tests, same labs and at least get the doxy going. I don't know if he will agree or not.
Just looking at me should convince him! I am no longer in a wheelchair, on oxygen and in a daze! My pain is much less than his pain.
To this doctor's credit, he told me many years ago that he was not good enough to handle my many and confusing symptoms. He mostly handles simple illness and my kids all like him.
Please see your LLMD!!!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
| IP: Logged |
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
It just seems to me that since I've improved it wouldn't hurt to stay on this regimen until November.
I could see the necessity of going if I were only staying the same or getting worse, but so many of my symptoms are gone.
Buhner doesn't change the protocol so I'm quite sure she won't.
I will probably go though. There are some questions I'd llike to ask. And I don't want to have regrets.
I know I'm not as sick as many here. I've even thought of not doing doxy, just doing Buhner and not seeing LLMD.
You'd think they'd want me to stay away so they could help the really sick new patients! lol
I know they don't want me to come because she doesn't have enough business. Lyme is becoming rampant here and we have few doctors to treat it.
Posts: 1302 | From USA | Registered: Dec 2002
| 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