I've been going to this one nearby LLMD (#1) for the past few months and he's been treating me with a low dose of Alinia paired with Rifampim.
My last appt was a few days ago and he agreed to raise the Alinia dosage because there has been no response so far.
While he seems very knowledgeable, he & his office are very scattered and disorganized. He said to feel free to email if I had any questions but two emails sent to him have gone unanswered. It appears that he has all of his patients on Alinia and has a great deal of faith in it. My faith in him is only about 70%. He said if I continue to be non-responsive to Alinia, he would have me do the IV Rocephin.
In the meantime, a reputable LLMD (#2) who spoke at our support group put me on their new patient wait list when I called to get an appt a few months ago. Her fees are pretty pricey, she requires extensive testing, and uses abx/supplement protocols.
Well, LLMD #2's office called to set me up with an appt this Thursday. It was a lot sooner that I expected. I was hoping to give LLMD #1 a little more time to see if the increased Alinia dosage would have any effect. If it did, I would likely stick it out with this guy. If not, I could either try the IV Rocephin or feel comfortable about moving on to another LLMD.
A request for feedback on LLMD #2 resulted in mixed opinions but one thing is clear - I can expect to dish out at least $1500 for my first appt and tests & supplements.
As with many of you, money is very tight and the thought of dishing out a good chunk of it concerns me. Right now, seeing LLMD #1 is feasible and my meds have so far (knock on wood) been covered.
Option #1) Stay with the current LLMD and treatment which could possibly help with a little more time. And if it fails, the IV treatment is available.
Option #2) Have the opportunity to be treated by someone who studied under Dr. Burrascano at a signficant outlay of cash.
If my appt with LLMD #2 is cancelled, I can be sure that any future opportunity will be gone.
Any and all feedback would be greatly appreciated! Thanks for taking the time to read this!
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
| IP: Logged |
posted
Option #3 reschedule your appointment with LLMD #2 -- There shouldn't be any reason why you couldn't reschedule this appointment for a later date -- just say you need more time to get financing arranged. If the doc is very expensive they should understand that.
And remember -- even if you see LLMD #2 you can always refuse any of the suggested tests or supplements -ask them to prioritize which are most important and in which order the tests need to be done.
It is always difficult to know when to switch docs. You will just have to go with your gut instinct. The doctor/patient relationship is a very important factor in my opinion.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
-------------------- Linda Posts: 39 | From Lexington, Virginia | Registered: May 2009
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Since I believe in the Burrascano protocol and have seen this doc get rid of lyme and company for a number of my friends, usually in one year (and no IV necessary, very expensive), I believe you should give Doc #2 a try.
The Burrascano protocol got me well. It's been 4 years since I finished my treatment and I am symptom-free, enjoying my life.
I have found that trying to go the el-cheapo way with this disease usually has a lower success rate. Why not see a good doc right off the bat and get rid of this disease right away and get back to your life.
$600 is for Igenex testing for coinfections. It's well worth the money because it can provide the doc with a lot of information that helps direct treatment. Any doc that doesn't do that at first appt, I have no faith in.
Doc #2 won't insist on the Igenex testing, but I think it is foolish to not do it.
I think you are blessed to have been called for this appt. If you want a treatment protocol that has a good success rate, go with the doc behind Door #2.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm learning quickly that TF is dead on. Being cheap or not seeing the best can be a recipe for failure. You get one shot. Make the best of it.
Pay VERY close attention of paragraph #4. It's super important. I wish I would've listened before. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
seibertneurolyme - That is a good recommendation. If phrased correctly, their office should be understanding of needing more time.
LindaS - I never asked where LLMD #1 received his training but it will be asked if I go to another appt with him. He has had Lyme and that is why he now treats it. Up until now, there have been no herxes. No supplemental support has really been recommended - I had done this previously with another doctor and absolutely nothing changed. I'm up to about 75% better after a time with Ceftin but really haven't budged since Feb - still feeling pretty much the same.
TF - I too believe in the Burrascano protocol. It's less a question of being cheap and more an issue of finding the funds to go (incldg the use of credit cards) I might be able to scrape up enough financing for the first appt but would likely be unable to do anything further. And I agree about the coinfection testing with IGeneX - it's crucial. Do you know if I have to be off of abx to have coinfection tests done?
seekhelp - Thank you for your thoughts too. I will be sure to do what I can to get to LLMD #2.
One good thing that seems to be happening is that I believe I'm experiencing some herxing since increasing the Alinia dosage a few days ago.
Does anyone know if Alinia is really only for Babesia or are LLMDs finding it helpful with other coinfections?
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
| IP: Logged |
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
we don't really know what Alinia does regarding Lyme. One theory is that it might tackle some kind of cyst form of Lyme, which may explain why you feel worse. I had a good experience on it but I DEFINITELY felt worse. See the 'Alinia group' thread if you'd like to see what I and others said about it.
-------------------- Symptom Free!!! Thank you all!!!!
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!
![[Smile]](smile.gif)
Printer-friendly view of this topic