littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Went to see a "LLMD" today provided on not one, but TWO lists from Lyme networks. Not a LLMD. He follows what Mr. Steere says (i don't even know if I'm spelling that idiots name right but don't care) and thinks I have ready...Post Lyme Syndrome, oh and fibro, left over from the Lyme that I treated for 2 months.
I could seriously injure something right now I'm so angry. I talked to him nursing staff before driving 4 hrs one way and she's oh yeah he treats chronic lyme, oh yeah he uses IVs and Orals. Oh yeah he uses IVs all the time. I even asked about LONG TERM treatment...oh yeah, he understands it's not cured easily.
DO WHAT???? I am in so much pain-tried everything under the sun from detox, to herbs, to anything anyone can think of-I've tried it. No one will treat my pain because Docs in GA don't believe in Lyme. Lyme docs seem to never treat pain-at least I can't find a decent one who does.
Can't get my anxiety treated-same problems. Haven't been treating the Lyme itself in 2 months because I can't control the extra pain and anxiety when I start herxing.
I'm ready to give up. I can't afford the LLMDs that charge my mortgage payment as a first payment. I can't find a doctor to treat my pain. I don't know what to do.
So I'm making it my MISSION to get ahold of every single doctors office on every list I receive and ask them enough questions to make their heads spin. I want to verify these doctors are LLMDs so no one else has to go through this.
It was a waste of time, money, and energy. And it just added more stress to my life. So here I am back to square one.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
littlebit,
I'm so sorry that this has happened to you.
I can understand how angry you are.
I would contact the people who keep the LLMD lists and report that this Dr is not a LLMD.
When you call other Dr's, I would ask if the Dr is a member of ILADS and follows ILADS guidelines for treatment.
HUGE HUGS to you!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
sending you a pm
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
That is a good idea. When I was shopping for a LLMD, I would not make an appointment without first talking to the doctor on the phone. If the doctor would not do that, I moved on. The LLMD I ended up with was sensitive and caring, and he answered my questions satisfactorily, so I made the appointment and have not regretted it. That was a year ago. To me it makes perfect sense to treat obtaining a physician as I treat any other thing on which I spend our money. I'm not just a patient, I'm a consumer, and in my view regarding doctors, also a partner in my health. If they can't deal with that, then I won't hire them to be my doctor.
I understand that in some parts of the country there are not as many LLMDs as we have here, so talking with a staff member about treatment options could also work if the doctor is unavailable.
I hope you find a qualified LLMD who will work with you to create the best treatment for you. Like you, our funds are limited. One way I get around that is I see my LLMD less frequently, consulting with him, getting labs, and adjusting meds as necessary either via an appointment or phone consultation if appropriate.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
That should not have happened. My post was written specifically for this. It was a sticky at one time at the top of Seeking Doctors but somehow it was moved. I also recommended people include it on their lists, so each person who receives names also gets a copy. Apparently that didn't happen here and I'm sorry about that.
posted
I'm so sorry That is SO frustrating. I've totally been there. Once I tried using an LLMD and had to find a new doc because when I reacted to meds it took him over 3 WEEKS to call me back. Sorry
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by littlebit27: I am in so much pain-tried everything under the sun from detox, to herbs, to anything anyone can think of-I've tried it.
No one will treat my pain because Docs in GA don't believe in Lyme.
I'm sorry you're in so much pain. I was too.
I finally found out that a good way to treat pain is to reduce inflammation.
I take Wobenzym, a systemic enzyme, which reduces inflammation and reduces hypercoagulation.
Two other things that reduce inflammation and pain are fish oil and magnesium.
Now the pain meds are helping, whereas before very little helped.
Carol
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
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posted
So sorry this happened.
Posts: 581 | From CT | Registered: May 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
This is terrible! Be sure to report this to the people with the lists.
A really important tip in choosing another LLMD (when you've stopped seeing red long enough), is to get in touch with local support groups and talk to people in your area about their experience of various LLMD's.
There may be in-person meetings somewhere near you, also. The state yahoo group would know of local meetings.
In terms of pain meds, if a new LLMD won't do that, go to a Pain Management dr. Again, ask in the local groups for recommendations. Some LLMD's do rx pain meds, although not always opiods. They may rx Lyrica, Cymbalta, neurontin, and the like.
There is a thread here on what people do for pain (may be on the 2nd or 3rd page now).
Lidoderm patches, which are an rx, can help a lot without having to take meds systemically. You might need other meds along with the patches.
Posts: 3792 | From around | Registered: Mar 2008
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
Metallic- I did ask questions. The lady sounded educated about Lyme and "completely understood" that Lyme is not taken care of with a couple months of ABX. She said the doctor understands Lyme can take a long time to get rid of.
I didn't ask enough questions, I guess. It shouldn't have happened, no, not at all.
Apparently there aren't any decent LLMDs in GA. I've called the office of every name I have in GA. They either aren't excepting new patients, are on an indefinite leave or don't deal with difficult cases, lol.
I am looking at one in NC, no more going South for me. I talked to the receptionist at length yesterday and she said they do use Igenex and Lyme takes a long time to treat. I told her I want to know what protocol the Dr. follows and she is supposed to ask her and get back to me soon. If I don't hear back I will call them back at the end of the week.
Not taking any chances this time.
I looked into another Dr. in NC and if you're rich and in NC they would probably been good. The man on the phone seemed to really know his stuff but seeing them comes with outrageous fees so that's a no go for me. And I mean $250 BEFORE you walk in the Door. And $450-$750 for the first appt. The $250 does NOT go towards the appt.
posted
Thats cheap compared to one i called. Two THOUSAND at the 1st appt..could run 4 grand with labs. Just not possible. Some will offer payment plans from what i understand. Im sorry you had a bad experience. I hope you find a dr soon!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I had this experience with a doctor in Alabama. He appeared completely lyme literate, but after being under his care for a little while, he talked up removing the medication despite my family continuing to report symptoms. His reply was that he had no intention of being investigated again.
Run away!!!!!!!!!
My family moved on to a doctor in Louisanna. WE have been pleased with our level of care there for for more than 3 years.
Recently I moved my personal care back up to N.Y. because I continue to deteriorate. My story is a little different.
I did contact two lyme groups that refer people to physicians and complained, telling my entire experience. The lyme groups responded to me and said that they made note of what happened to me. They took it seriously.
So please do report, for all of us.
I'm so sorry again you went through that. Many or most of us have been there.......it's enough to make smoke come out of your ears.
I'm hoping you find a good fit with another doctor soon.
Take care, Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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posted
I don't understand doctors who charge an appointment fee. One I called requires $650 to make an appointment, and then they are very expensive for every service and appointment thereafter. I believe this gives fuel to the contention by Lyme detractors that we are being taken advantage of by opportunistic practitioners who nurture a false belief in chronic lyme for their own gain.
Because there is, in many states, some risk involved for treating physicians, maybe there is justification for higher office visit fees, but what's the deal with charging for the privilege of making an appointment?
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
They want $250 as a fee for looking at your medical records and such to get a history.
I just can't imagine having to pay that, to me that is a waste of money. It does fuel the people against Lyme saying that these doctors are just trying to steal our money.
I do understand having a little bit higher appt fee then regular doctors because of the risk, but seriously some want my mortgage payment for one fee, I just can't do it.
posted
Boy, I'd like to think so. Back when I was trying to get a diagnosis, I'd gladly have paid that much to have a qualified doctor give my records a couple of hours of undivided attention. But when I asked about the fee, the most complete answer I could elicit was "that's just our policy." It didn't sound to me as if my $650 would buy anything more than an appointment. My theory is that it may be one way well-known LLMDs limit their practice.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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That is SO frustrating. I've totally been there. Once I tried using an LLMD and had to find a new doc because when I reacted to meds it took him over 3 WEEKS to call me back. Sorry 
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