posted
Looking for anyone with information on any Doctors they know that are familiar with or use Dr. H Protocols
or
Have been to the Sponaugle wellness institute in Florida.
My current dr seems to just be guessing constantly, even though he's touted as a LLMD and the best in the state I'm in.....not impressed and not improving.
Every time I see him all the response I get is "well we can try this and see if it works".
Any info on these doctors or treatment plans would be very helpful since I'm willing to go where I need to actually get help.
Thanks in advance.
[ 06-20-2017, 04:25 PM: Message edited by: faithful777 ]
Posts: 10 | From CO | Registered: Mar 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Sponaugle does not actually directly address / treat lyme or other tick borne infections. It's just support.
So, no, I could never recommend that approach of Sponaugle.
Many here have posted of being disappointed and drained financially after going there . . . even if some of their support methods can have effects, if they miss some of the major steps, it can be temporary.
You need someone who is very much lyme and TBD literate. They are not.
Lyme / TBD requires a multi-faceted approach that will absolutely not miss any step. Dr. H's book details 13 major point. The newer edition may go farther in that. Be sure you have the current edition.
1. assess, determine just what all is going on [if that is not possible, start logically and systematically]
4. also offer key supports for various organs / systems, etc.
Dr. H's book is an excellent read. Also open up for a search in your state / region for other ILADS educated LLMD and LL NDs, perhaps who will guide you with such a comprehensive approach.
There are many who use Dr. H's outline as sort of a template. Same said for knowing Burrascano's work. Even if other approaches, his work MUST be part of the education foundation.
Still, money is a key factor in determining a path. I hope the links below will also offer some options. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you are considering a variety of modalities, - when considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
Links here to two major sources: BUHNER . . & also Zhang. Be sure to get their books before you settle on any particular path.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Krystel,
No, I've not been there, though at one time when I thought I might be able to scrap together a bit of money, I studied up on their place & learned that they do not actually treat lyme / TBD.
And I read lots of personal accounts as TF has posted in that link.
Trust TF on doctor recommendations. You are in excellent hands with any of TF's suggestions. Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I got your PM and really appreciate all the info TF!
While I appreciate the warnings and links about Sponaugle, I guess I was hoping for more recent information- most of those posts are years old and treatment protocols can change in that time.
Still, I thank you.
Posts: 10 | From CO | Registered: Mar 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I have kept up to date on them because every few months, someone asks with high hopes. They still do not have the capacity to treat lyme / TBD. They do not cover all the bases.
I used to be in & teach journalism (so I know how to seek out detail & have learned to look paste false promises),
I've studied a lot in the alternative area (as I've had to take care of myself due to lack of funds) . . .
so I've studied up on who out there lives up to their word, who has the skill, knowledge, etc. - not so much with individ. doctors but with some of the web based places & their advertisement claims that side step the infection part of treatment.
Once, I also traveled 3,000 miles to see a doctor who was said to be a LLMD. He was not. He knew about lyme and certainly understood how very ill I was, said I was the 2nd most ill patient he'd ever seen . . . yet he would only treat for 3 weeks. Beyond that, only support methods.
I also wasted thousands of dollars with a ND who, by other accounts was top notch, who SAID he knew all about lyme, so I just trusted him for years. Turned out he was not really at all adequate and did not understand the science of lyme / TBD. I was only given support treatment when it came down to it.
But that was 20 years ago when diagnosed after years of severe illness and Google not yet even around. Choices to treat very limited as was information.
I did manage to see a LLMD and LL ND years later on but could only afford two visits, mostly as consult as I knew I could not continue other than with patchwork here and there.
Along the way, a couple of regular doctors tried to help as best they could (though more were dismissive) . . . yet, even with a basic Rx "recipe" I could not tolerate it - my ears were in danger from the ototoxic effects.
I needed an expert who had more skill to figure out how else and the money for a full approach. I lost that chance by first going with people I thought new more than they did.
So I have a particular passion to help others avoid such traps. Lost time and money can mean a lost life.
This is a time for real experts, not for some kind of recipe but for their knowledge & experience and their continued education in all matters of lyme, tick borne infections and ramifications.
Do also read all of Buhner's books on lyme / TBD, though, as well as some others in the "how to find a LL ND" thread. This gives you essential background in the science of these infections as well as various treatment considerations. Every LLMD and LL ND should be familiar with his work, IMO.
As far as recommendations: I give TF the highest rating for knowledge regarding suggesting any particular LLMD. Over many years, her posting content has been excellent. Five stars, indeed.
I hope you will explore the recommendation she sent. And if that is not an option for some reason, get back with TF for follow up.
Take care. -
[ 06-21-2017, 02:35 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thank you for that insight Keebler, I can somewhat understand what you're saying but not to the same extent.
Do you have a recommendation that you could PM me? Someone that after all your troubles you found trustworthy to treat you?
Posts: 10 | From CO | Registered: Mar 2017
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I've not been able to get treatment. I'm doing the best I can with one or two specific herbs, it's all I can afford. I am still very ill & much disabled to a degree that you never want to be.
Please, give the suggestion of TF some serious consideration. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Sorry to hear that, truly, I hope you can find a path forward.
I have and am getting information on TB's recommendation. Hopefully I will get some more info from the office soon and I can try her approach.
Thank you both and am also more than willing to hear from other members if anyone has additional information.
Posts: 10 | From CO | Registered: Mar 2017
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posted
I agree .. I would not personally waste my money at Sponaugle.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Lymetoo: I agree .. I would not personally waste my money at Sponaugle.
Absolutely agree! Beware of these places that promise the moon, but only drain people of $$. They prey on desperate people, as Lyme patients often are. Horrible.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Krystel, I'd strongly advise the proven and true. I lost about $2000 to a unethical doctor(specialized in babesia) that promised me the world in Florida. Trust the experience of others. When you are newly diagnosed and treating I think you're more vulnerable to those that prey I'm sorry to say.
Posts: 859 | From Southeast | Registered: Mar 2011
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Sponaugle is very expensive and I haven't seen positive comments about it on Lymenet.
You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment! Sounds like the one you're seeing is not very good.
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Unfortunately, LLMDs are far and few between. You need to go where they are. At least half of all Lyme patients travel out of state for their care.
Most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
I was told doctors in CO do not treat aggressively enough, because CO is extremely tough on any doctor who does. The medical board is relentless on them. Posters on Lymenet from CO recommend going out-of-state to see a LLMD.
When calling for an appointment, ask if they have any cancellations or a waiting list. Patients have been able to get in sooner by doing this.
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
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