posted
So I joined this group back in 2011 as a very, very sick person, but now I want to come back and help as a recovering one! Yay for getting my life back :-D
I'm guessing the Seeking a Doctor and Medical Questions are still the places that need the most support?
Posts: 330 | From TN | Registered: Sep 2011
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posted
Thank you! It's great when people who are better come back to help those who are in the middle of trying to figure out what to do!
You can help in any section. Helping in Seeking a Doctor means you have actual doctor referrals to make.
If you want, feel welcome to say a little about what you did to get your health back - if you feel like it. That can be inspiring to others.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Good to hear you are doing well and thanks for coming to help. Please share (if you would like to) what treatment path you followed/are following and what helped as well as what didn't. It would really encourage others.
We all do this on a volunteer basis and know full well how frustrating it is to find help. I found it here years ago when I was looking for my son. He has gotten better, but is not out of the proverbial woods yet.
I believe in helping others, so that is why I do what I do and pay it forward. Unfortunately with this horrible disease, you have to find the answers yourself as there is no one leading you or telling you what to do next!
We need to help one another, because we are all in this together!
Posts: 8981 | From Illinois | Registered: May 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Yes. Ty for coming back. Glad you are much better
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
That's awesome, ralphi!! So glad you are doing so well and ready to give back!!
Seeking a Doctor can always use the help.
I can send you some lists of LLMD names if you'd like.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Awesome Ralphi! What treatments worked for you? Just telling us will help others.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Ann-Ohio
Frequent Contributor (1K+ posts)
Member # 44364
posted
Seeking a Doc and Med Support really do need you, but I hope you will keep stopping by here.
Ann - OH
-------------------- Ann-OH Posts: 1584 | From Ohio | Registered: Aug 2014
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posted
Thanks everyone! I did kind of a low-dose protocol for about a year and a half in NC, but plateaued, so then I went to a doc in DC (DNP S.) who treats aggressively and addresses biofilms. The treatment was hard, but I'm doing so much better now :-)
Lymetoo, I'd be happy to help with LLMD referrals! I have a list of about 6 who follow Dr. B's protocol and treat aggressively that my doc gave me (you'd probably recognize all the names), but they all have long waiting lists, so I need some more options for folks.
Posts: 330 | From TN | Registered: Sep 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks for coming back.
the DNP S. you saw, I htink I called there when I first dx. it was like a year wait. and tons of money.
is there no other way?????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Did you ever read my post "What makes a lyme doc top notch":
Based on my experience (I saw a total of 3 lyme doctors. The third one got me well.), I tell people to get to the very best lyme doctor they can afford.
That gives you the best chance of getting rid of this horrendous disease.
Word gets around in the lyme community and people vote with their feet. When folks are flocking to a certain lyme doctor, that tells you something.
This doc now costs more than before. And, it isn't easy to get in with her. But, there is no long wait like a year.
Posts: 9931 | From Maryland | Registered: Dec 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
that is exactly to what I am refering to TF.
.... that to see a "good" ll dr you have to travel or have money or both.
everyone knows "best you can afford" is pretty much how life goes in every aspect.
but many people with lyme or other diseases have to settle for average drs. from what I have seen, if the fancy $2,000/apt. drs would run their office like the $190/apt drs, and have as much heart, they would help way more people.
it's clearly all about the money.
I have seen 3 very special lyme drs.
none have been famous, but they are in my price range, although still breaking MY bank, and they each never have rushed me, and they always took their time and went the extra mile. one even gave me a free Vit B shot, and hugged me after my apt.
the other also gave me complementary meds when I was stuck in a plateu in my treatment.
and 2 out of the three did reallyhelp me move on in getting better, with the current dr taking me from not walking or talking or reading or etc 18 months ago , to a great difference of what I am today which is able to do most things pretty good, and still working towards a goal of 100% healing.
when someone says -best you can afford- that is what I did, and I feel better than some that have seen the great dr H and other well known $2,000 /apt drs.
maybe it's just me and I am a fluke? I think not. I think that some people know what they are doing but no one goes to them because they think they can't be any good becaseu they *don't * charge $600-2,000/apt. !
let's face it. it is all relative.
and there are zillions of variables.
so when someone says , get the best, I have to chuckle. MY best according to my affordability is like $50/hr.
that's what I can afford. too bad most drs are in it for money money money
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I would like to add one very important bit: what I think is most important: listen to yourself, no matter how hard that may be , being a sick person. try and really listen to what your spider sense is telling you in who to stay away from. just becasue someone is published, or in photos with famous people , a good lyme dr does not make.
second, research on your own. that , to me, is vital. if you simply trust what one person tells you as gold in a dr, you are diong yourself a great disservice. let your house go, let your life go.... but read and research no matter how hard it may be. talk to as many people as you can to get info, call prosective drs offices and ask lots of questions. call more than once if you need to, and THEN decide where to spend your money and not waste it.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Hang in there, LisaK! I've never been to a doc who was $2000 an appointment! That's a little ridiculous.
My LLMD was $700 for the first appointment, but that was like 2 hours. I pay $250 for a phone appointment every couple of months (I could have an office appointment for the same price, but I live too far away). This is pretty standard for docs who don't accept insurance; they do have to make a living, pay high dollar rent, buy liability insurance, pay staff, etc. My insurance covers appointments as an "out of network" provider, too, so I don't have to pay the full amount.
Posts: 330 | From TN | Registered: Sep 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ralphi, that is what I mean.... how come my current dr charges $120 first visit and $20 for followups? and the other dr I went to was $400 for first visit? and 190 $ for follow ups.... and yours even higher? The 1st dr I saw for this stuff only charged me $90 for first visit, but he wasn't a "lyme" dr. but was very into learning and eager to work with me.
all 4 of these drs, as well as every other dr out there, have same kind of office pretty much, or COULD have same kind of plain, modest office. I can go without coffee in the waiting room, or posh chairs.
and I don't really care if the bathroom has organic soap.... and if there is a fountain trickling in the waiting area....
so whaat is real difference.?? most office personel are the same usually. and all three of my drs were personable and great bedside manner- so why the big differnec in cost?
and yes, there are others I called and they ranged from $800-$2000 first visit and that was with no promise to treat or to even start tx after that 1 apt!
I even told the one place that I guess I will go and die becasue they were telling me that it was imperative to come in ASAP since the tick was found on my breast and it could be developing cnacer, but when I told them I have not the money fo r that they couldn't even give me a payment plan. I told them I will just have to die then and the office lady said "ok". haha
and this was after the dr got on the phone with me for like 30-40 minutes! so I guess that $$ covers everyone else chat time.??
All I know is , that the more expensive dr I personally saw drained our entire bank, and all teh while giving me updates on his 6,000 sf house and it's renovations and how he can relate to not having any money becasue of that. o brother, give me a break!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Yes, I too am sorry that Lyme doctors charge so much when so many patients are impoverished by these illnesses.
At the same time, we know that insurance companies are not paying these doctors, which is wrong, as they are practicing medicine, like other doctors are practicing medicine, and it can be even harder being a Lyme doctor and having to deal with all the uncertainties.
So it's a difficult situation all around.
If I had my druthers, I would ask doctors to charge less so more people could afford to go.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Agree Robin. It's always a big red flag for me when the initial consult, w/o testing of any kind, is so high. These are the ones I stay away from now.
At first, when I had the money I sought out anyone who offered help. Like everything else in life, there are some that take advantage of sick people, especially when there is not a real "cure" for every type of lyme.
I went to a "recommended" doc from this site who sat with me, after having me fill out 30 pages of info and didn't even look at what I had written. He complained how insurance wouldn't cover treatment and bashed them the whole time, telling me it was up to ME to pay for treatment.
This initial visit was $600!!!!!!!!
Then he said his nurse would come in, take my vitals and set up the next appointment. ...I ran fast.
Posts: 867 | From PA | Registered: Jan 2006
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