I'm considering hiring a "lyme coach/advocate" for a trial run. Mainly to have another set of eyes and ears on my health and my doctor's medication recommendations.
I'm curious if anyone here has had success with that
Posted by Tincup (Member # 5829) on :
Hey Life's a Beach!
Welcome to LymeNet.
A Lyme coach? OK, but before you hire someone please keep in mind...
I'm free. So are all the others here.
And having a ND oversee a LLMD's recommendations is like mixing oil with water, isn't it? Or like a medical doctor giving opinions about chiropractors.
Are you considering a former Lyme patient to provide this service, or is this the service you are considering?
If the link above is being considered I wouldn't expect them to be in complete harmony with a LLMD and it may just result in total confusion for you.
The old saying- "too many cooks spoil the broth" comes to mind.
Might want to consider either having a ND or a medical doctor, not both.
I am checking into it a bit further and will get back to you.
Posted by Keebler (Member # 12673) on :
- you say: " . . . another set of eyes and ears on my health and my doctor's medication recommendations. . . ."
Yes, that can be confusing. If your doctor is ILADS-educated and a true lyme literate doctor, and you have good reports from them from your area lyme support groups and from other trusted lyme patients,
you don't need someone to "check their homework" so to speak.
However, there may be help in other kinds of adjunct care such as acupuncture, herbal support, etc. but they would need to be ILADS educated as well.
I did not see any mention of an ND in the first post but must say that - most often a LL ND and a LLMD can be enormously helpful as the ND has further training in herbal methods.
Many LL NDs & LLMDs consult, work together, etc. and as long as each know what they need to know, it can work.
The key is finding ONLY ILADS educated experts, even if they are some kind of other "coach"
The term "coach" makes me rather nervous, though, as certification, training, and focus can be all over the place. I've read of too many "coaches" that are just gung ho aggressive and really don't understand the very serious realities of lyme,
especially regarding physical energy outputs / payback.
Be very, very careful if you choose any "coach" - and know that they are most likely not at all educated or certified to dispense medical advise.
If you want a "coach" to encourage you to maybe get out and walk or to organize your home, etc. that's something different.
How you define the term, how they define the term, the expectation and requirements can get confusing as can the dynamics of the relationship.
Talk to those in your area lyme support groups . . .
and to all LLMD and LL NDs office staff in your area for suggestions on any adjunct "coach" you might consider. -
Posted by Keebler (Member # 12673) on :
- 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 . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever - not if there is inflammation in the spine with active infection. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books. -
Posted by Robin123 (Member # 9197) on :
I still think the best coach is the doctor you're working with, because they can watch all the parameters, including blood tests panels, etc, that show them what your body's chemistry is doing.
I also think really well-run support groups can make group comments about what seems to be working and not working re treatment, and in that way, you'll get lots of opinions. Don't know if that will be helpful to you.
Posted by randibear (Member # 11290) on :
hmmm. what if the coach disagrees with the doctor?
are they going to be a certified medical professional? are they going to monitor your prescriptions? will they consult with the dr and advise them?
too many questions, and, frankly, a good chance of receiving conflicting information.
if you don't trust your doctor, then why have them watched?
sounds like you need a new doctor
Posted by Keebler (Member # 12673) on :
- As others mention, [if your doctor is a "true" LL doctor] they are the best to advise all aspects of your treatment plan.
However - and some other kinds of professionals have been suggested - your LL doctor may have suggestions for individuals in his professional circle if you might need or benefit from certain attention to some areas that might not be his forte.
For instance, they are not going to be doing massage or acupuncture but they should know the best around who do who are also - and this is vital - knowledgeable about lyme / TBD (tick borne disease) as it changes all things about the body.
Your treatment doctor should know all around your area who would complement - not counteract - his plan for your success. If you decide on your own to add or not take something, communicate WHY to them so that adjustments can be made.
It's a relationship that is built on communication and trust. If changes are made on your own, then it's not the plan he / she outlined for you at all and can have unforeseen results.
On the other hand, many are open to adjustments for individuals. Just be clear and open.
Be sure not to do anything - add anything - subtract anything - without their knowledge. -
Posted by lyfesabetch (Member # 50124) on :
Hi all, thanks so much for your replies!
I guess I should have given a bit more info up front. I'm about 3 years into my lyme journey, have tried many, many therapies.
I'm currently on my third LLMD (due to moving, not b/c I had a problem with any of them) and I like my current one a lot, he seems very intelligent and empathetic.
He isn't focused on *only* abx or *only* herbals, he just seems to be interested in finding what works for each individual person.
This isn't about questioning his diagnosis, it's about the fact I have no one in my life that has much knowledge about any of this stuff,
and I'd like to be able to talk to someone about what treatments I'm doing, planning out questions for my doc, talking about the latest syptoms, etc., without paying $10-15/minute.
I guess I could start scheduling "mini visits" with my doc halfway through treatment protocols, but even a 15 minute visit would be rather expensive and not much time to talk.
I appreciate your warm welcome and those of you (basically) saying "why get a coach when you can post here".
I suppose the main argument would be that a coach/advocate/advisor would have access to all my lab tests, would have my full treatment history, and over time be extremely familiar with what I've gone through and any problems I've had.
-JC
Oh and i wrote a few poems here if anyone is interested:
edit: lol it is censoring my url...lyfesa[horrible terrible curse word].com
(breaking up the post for easier reading for many here)
[ 04-05-2017, 04:54 AM: Message edited by: Robin123 ]
Posted by Robin123 (Member # 9197) on :
I still am of the opinion that your doctor is your best caretaker. I think 15 minutes is too short a time - half hour is a reasonable short appt.
Perhaps you could record your symptoms, meds, changes in the form of a spreadsheet so the doctor can see the info quicker. It could be a monthly, with the calendar date on the left side and vertical columns for the topics.
Not clear on the charge for 15 minutes - I bet you meant to type some other amount than $10 for 15 minutes!
Hi Robin, thanks for the link and the support group idea, I've been meaning to try that out and keep forgetting. I made him a couple spreadsheets for historical protocols for our first appt, but I agree it would probably help to have an updated spreadsheet for each appt. Part of the problem is that when I'm at a low point, I have no interest/ability in doing something like that, it's really hard to be consistent caring for myself.
As for the cost, I meant to say it's $10-15 per minute with this doc (don't remember exact price). My last appointment went 70 minutes (we had a ton of new lab results to cover) and punched a whole in my credit card.
Posted by Tincup (Member # 5829) on :
Hey you at the beach!
I ran this past some professional people and they pretty much said what the others here already mentioned. One comment was too many cooks, so I was feeling all giggly that I had some support for my statement right off the bat.
Some felt a coach should be free, some thought having one would be good if it didn't interfere with the doctors protocol.
My final thought, after thanking Keebler and Robin593875, is that it is entirely up to you.
If you feel the need and want the personal support, which you indicated you did, then by all means go for it.
We just want you on a road to wellness with the best chances possible.
And if you ever do have questions, that's what we are here for.
Posted by Keebler (Member # 12673) on :
- Spread sheets -- IMO, drop that kind of homework. It can put too much pressure on yourself to present the perfect amount of homework to connect all the dots.
The doctor can connect dots without your having to go to so much trouble. really. You can relax on that.
Some find keeping symptom journals to be of help but I have found them just a time waster and not of any help whatsoever to me. There is just too much fluctuation. I have learned over time, of course, when things I do - or don't do - matter and I just learn from that.
Any true LL doctor won't need a historical spread sheet - other than perhaps with a history of medications or, more specifically, Rx that might have really been either wonderful or awful for your body.
A true LL doctor looks at you - today - how you are getting along, etc. They diagnosis what they see in front of them.
They ask questions to find out pertinent history or other detail as to degree, frequency but they can get this from their own questionnaire or they exam with you.
And every LL doctor knows - they know - that symptoms come and go so you don't need a fancy time chart that tells them all that.
You don't have to provide a book to them. They can do their job by you mostly just being present with them. They can see, hear, sense. They have experience with all this.
You earlier describe what you had in mind, as
If you find such a person as a "coach" who will be CERTIFIED with a medical degree & as thoroughly expert, educated, intelligent -- and you need nothing less
in anyone to whom you handover such responsibility as doing everything you are asking the doctor to do, really, to assess, to think, to plan, to follow you, -- to be a "shadow" doctor to your actual doctor --
they would have to charge as much as the doctor. They would just have to. One does not reach such a level of competence, acquire such education and then just hang a sign out to be a friendly coach at a neighborhood café. This would be their job, and they would have bills to pay, too.
But, ethics would require that no such credible person accept such a job if it's just to "shadow" another doctor.
Yet, there are many ways to learn about what you take. So many ways. Ask us here.
Look up on reputable sites (not the basic ones Google just spits out) to learn about each Rx or support herb / nutrient.
The books in the "How to Find a LL ND" set are your best place to find "backup" information.
Ask here about some things. Ask your local support groups how they've done with the doctor you have.
and there is a certain amount of trust in the process - after you've just checked to be sure that your doctor does have the proper expertise, education, etc. You are lucky to find one that is working with both DIRECT & also with SUPPORT methods tuned to your INDIVIDUAL body / load.
And, with books we can suggest, you can learn how to put all this into perspective. Answers can be found in so many books, articles, ILADS presentations, etc.
And here. Many are here to help so that others do have an easier time of it. While you can't post your specific treatment plan here with doses, amount, etc.
You can ask: what does _____ do? Or why is [whatever] suggested [or not]?
Or "hey, what are ADRENALS [or the LIVER?] and why are they such a big deal in all this"" -
[ 04-05-2017, 01:18 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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 . . . . -
Posted by Keebler (Member # 12673) on :
- For ADJUNCT treatment, something that can COMPLEMENT your protocol, there are likely many possibilities. You might find such in the categories above.
Adjunct care - supportive treatment - would not be the same as what you seem to be seeking in a directive / confirmation kind of "coach" yet they would certainly be "on your team".
If you have access, certain kinds of adjunct care can be enormously helpful and most LLMDs will know the best providers in your area. -
Posted by randibear (Member # 11290) on :
final comment. if my llmd or regular drs found out i had hired somebody to monitor me and them, they would probably "fire" me as a patient.
in fact, this happened once when I told a doctor I had consulted another doctor. he promptly told me that obviously I didnt need him then.
jus be careful. I'd hate to see anyone loose their doctor.
example, my husband's dr recommended a dr for his prostate. I looked him up and he got goshawful reviews, really bad.
he told his dr that he found somebody else through a friend who was highly recommended.
boy...his dr said he would never recommend a bad dr and on and on.
he didn't take it too kindly.
Posted by Keebler (Member # 12673) on :
- Well, in such a case as your husband's it's good that he figured out to search around
any doctor who is not open to a second opinion - or does not support a patient's right to fully consider other methods / modalities / even other doctors to be part of the TEAM . . .
then that doctor has problems and I would not want that kind of doctor.
Online reviews, though, are not always a good way to find truth. Sometimes, the reviews can be a good clue but sometimes, they can be wrongly stated, either way.
Recommendations by friends, family, support group members for doctors who have done well in their jobs - that's the best place to find good recommendations.
Any doctor who is not open to any patient doing that kind of homework is not a good doctor, IMO. And it's good to find that out sooner than later.
Most good doctors whom I'd had the rare pleasure to see welcome questions and exploring various methods [beforehand, though not for patients to just go against tx advice without discussion] especially if something else might help. -
[ 04-05-2017, 04:10 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- I assume you have already confirmed that your doctor is ILADS "educated" . . . "minded" so as to at least have the basic science of lyme and other tick borne disease facts.
There may be some very good LLMDs who are not actual members of ILADS for various reasons, yet, the ILADS model of knowledge and combination / rotation treatments that include a range of tick-borne infections is what is generally meant by ILADS "educated"
as opposed to a doctor who says they treat lyme but is going by the IDSA off kilter mindset on this. See next post about how to determine a really good doctor for more detail.
You are right to want to know that your doctor is a good one, of course. The next post will be of good help, I hope.
Find out if your doctor has written any articles or contributed any chapter to a book . . . any presentations.
By finding out more about how your doctor thinks, how he sees all this, that can help as you formulate how much he / she knows and their mindset / methods, etc.
A few questions that could be posed to doctor's OFFICE MANAGER:
there is so much to learn about all this, does the doctor recommend a book or two . . . an article that stands out among the best?
[As you seem the flow chart kind of visual thinker] . . .
Is there some kind of flow chart or simple question list that would help make our appointments work better? -
[ 04-05-2017, 01:57 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
What Makes a Lyme Doc Top Notch (TF shares this) -
Posted by MichaelTampa (Member # 24868) on :
I wonder if there might be value for some to truly be at the appt, to help remember and understand what was being said ... and perhaps even ask questions the the patient would wish later they had managed to ask. Sometimes the appointments are long, and remembering the details and reasoning can be difficult.
Posted by randibear (Member # 11290) on :
hmmm, most doctors allow family but I dont think they'd allow just anybody to sit in.