posted
My sister talked with a woman on the west coast that swears by a chiropractor she sees 3x weekly for treatment of Lyme. The woman knows of another woman in NY that sees a physician who specializes in treating cancer but treats her for Lyme.
Sis sent me a website link for the NY doc. He doesn't say anywhere on the site that he treats Lyme. But he charges $4,000 for initial consult and follow-up visit to give results and treatment plan recommendations.
Then it's $650 or something like that every 6 months and his cancer patients take about $850 in supplements monthly, other patients somewhat less.
I've been under the care of an ILADS trained doc for several years and am only somewhat better. He's competent--I have lots of co-infections and was sick for a long time before diagnosed.
He's had me on a sack full of supplements, altered my diet, sent me to a homeopath and also started me on herbal treatments in addition to meds. It's a lot less costly, too!
If I tell my sister it's too expensive to see the doc she's located, she'll offer to pay for it. Travel is a problem for me--wipes me out and I'm a couple of states away from NY.
I am skeptical the new guy would have any answers for me. Wouldn't his reputation have spread in the Lyme community if he's actually doing some good with treating it?
Suggestions on what to say to my sis? I don't get to talk to her much so I want to avoid offending her.
Oh, when I was first diagnosed she sent me the cure for Lyme which was the salt and C protocol trying to be helpful. She just wants to help.
Posts: 67 | From the state of Lyme | Registered: Sep 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I would just say thank you for the information. No real explanation needed.
You are an adult and you can decide who you see. You don't owe her an explanation.
I would not trust a provider who charges his patients that much money, and has his patients spending that much money monthly on supplements.
I would stick to LLMD's/LLND's who are known to have a good track record treating chronic lyme patients and are members of ILADS.
-------------------- 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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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I agree with dekrator.
My LLND charges me $40-$80 a visit.
He has saved my life. Is saving my life.
And obviously doesn't do it for the money.
I tend to get my back up when I read or hear about sick people paying exorbitant amounts of money for hope for a better life.
Perhaps I am naïve, but I would always hope that doctors choose to treat lyme patients because it's the right thing to do, not because they can make a lot of money off it.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Tell her how much you appreciate her encouragement and emotional support.
She probably feels powerless watching you suffer.
You are blessed to have such a caring, understanding sister.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Greta,
Sounds like you have one gem of a doc!
I think it would be cheaper for me to pay the airfare to go see your doc and pay him the $40-$80/visit! I pay that much just in gas and tolls going to appts for our LLMD!
And what we pay per visit is in the hundreds, every 4 - 6 weeks. If anything else is done in the office, such as IV vitamins or the like, the price skyrockets. We just paid $500 out of pocket for DD for the last visit. If we're lucky, insurance will cover between $150 and $200 bucks.
And let's not even discuss the ridiculously high cost of out-of-pocket lab and supplement expenses.
granniela, kudos to your sister for her extraordinary generosity.
Based on what you've said, your sister's motives are pure. You've only improved somewhat after being treated for several years by an ILADS-trained doc. Seems to me like it's time for you to move on. No doctor has all the answers.
I am trying to put myself in your shoes. But I identify more so with your sister. I think you should gracefully accept her generous offer (unless of course there are strings attached, but that doesn't seem to be the case). From what you are saying, she is coming from a place of love, and what a beautiful gift that is.
I understand why you would be skeptical of this new doc. His reputation wouldn't have necessarily spread throughout the "greater" Lyme community via lymenet and other websites.
There are are plenty of docs out there who are good and knowledgeable and Lyme-literate and well-known on a smaller scale in their locales.
Best of luck to you, whatever you decide to do.
Posts: 1885 | From here | Registered: Jul 2012
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Sounds like your sister is trying to help you, but it would be nice to see if anyone knows anyone about this doc.
Posts: 13117 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Suggest she block off her calendar for the day the ILADS conference will be web-cast. Usually sometime in late Sept. or Oct. usually only for the very same days / times as the conference itself. After that, on DVD for purchase. Hope they do that again this year, anyway.
This will give her a chance to see what various ILADS presenters are looking at these days.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- BTW, it really important to know that for anyone with lyme, the neck or spine should never - ever - be suddenly twisted. This can be very bad and cause damage. Many chiropractors who don't understand the complexities of lyme don't know this.
If you seek body work, UPLEDGER style of cranial-sacral is safe and gentle. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Good suggestions Robin and Keebler (as usual).
And Keebler, yes, so very important to know that neck/spine should never be suddenly twisted/manipulated in patients with LD.
And that's something I knew years before TBDs came into our lives. Generally speaking, I do not believe it's wise for a chiropractor to manipulate/adjust the neck/spine of LD patients. Caveat: I am not a medical professional and this is just my opinion as a layperson.
I am looking into craio-sacral therapy as we speak. Also checking out the UPLEDGER site.
Posts: 1885 | From here | Registered: Jul 2012
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