Stay the Course - treatment advice

I just found this interview with Heiner Fruehauf, who developed the Classical Pearls Chinese medicine protocol for Lyme-MSIDS.

https://www.voiceamerica.com/episode/92195/lyme-disease-and-chinese-medicine

Full disclosure, this is the protocol I've been using for almost a year, and I love it, although it's slow and not without its setbacks, like all Lyme protocols.
He says something at 49:48 that I think is really important to all of us, no matter what protocol you're using:

Heiner Fruehauf said...
“One of the most important things I want to convey to listeners, particularly those that have Lyme is that, in my experience, it is part of the symptom picture of Lyme and Lyme-like diseases is that the light at the end of the tunnel is not seen, and very often there is a hopelessness overcoming the system -- I always compare Lyme to the Dementors in Harry Potter that suck all of the light and the hope from you –

and so very often in part of the Lyme process is these very emotional knee-jerk reactions from moving from practitioner to practitioner and changing protocols all the time; and while I by all means want to encourage you to pick your practitioners wisely and work with people who have that as their main area of expertise, you want --no matter where you go and what you do with Lyme, there will be this roller coaster that you just described, and you’re basically giving in [to] the command of the parasites by throwing down the regimen and starting over and maybe in between not doing anything for a while.

It’s a little bit like going out into the open ocean with a captain that’s gone from NY to France many times and you as the passenger say, “I’m afraid, I have this feeling, let’s go this way.” It’s not possible for the captain of the ship to listen to that because you could be.. you know if you would just keep going straight you will get to the other side within a week… whereas if you listen to the passenger you might be going in circles for the rest of your life, and I see that a lot with Lyme patients.”

I've thought about this a lot and is one of the first things that came to my mind when reading Yolanda Hadid's book, "Believe Me." Now, obviously the story spanned many years, but it struck me that she had access to THE most prominent Lyme doctors in the world and the best treatments, but was constantly looking for the magic bullet, and so never seems to have settled down and stuck with one protocol for the duration.

It's really important to reiterate to those struggling that you must find your own path, and it is a marathon, not a sprint. That can be super depressing at first because our Western minds insist there be a quick fix for everything, and losing your life to this disease is devastating. But eventually, in year two or three, you need to accept it, or you will not be able to move on with healing.

We also need to encourage each other to keep fighting. Feeling like death is part of the norm. Don't give into it or despair.

That being said, are you comfortable with the idea of being on your doctor's protocol for many years? My LLMD used heavy antibiotics and prescriptions for all symptoms. It destroyed me. I had to choose whether to stay that course no matter the cost, or find a different one. The risk of long-term abx (which I was already feeling) was NOT worth the possible gain for me.

YOU ARE GOING TO FEEL LIKE YOU ARE DYING, at some, or many, points in this journey. Does your doctor give you confidence that they are aware of your reactions and will not let that happen, or do they brush off all your symptoms and add more drugs? Are you okay with that?

We need more compassionate and listening doctors to assure us that we are on the right course. For me, personally, I feel like the herbal route (particularly the ancient Chinese one that's been around thousands of years) is the only one I'm willing to trust completely to not do harm than good. I still have my doubts at times (the parasites are talking!) but my DOM's are able to feel my pulses, assure me I'm okay, and support me through those "I'm dying" times.

Stay the course, but study your maps and interview your captains carefully!

Babsbunny,

Thank you immensely for this post and especially for including the verbiage of the speaker and not just a link to the speech. For some reason, I often fail to click in links and read or listen to what is there.

That is a very good message for us, indeed.

Have you seen benefit from acupuncture?

jboy145 said...
Have you seen benefit from acupuncture?

IMMENSELY. I think the most important has been SLEEP. It took a few weeks for me to start responding to it, but I'm glad I kept at it. I still have nights of insomnia, but they don't affect me nearly as much because I'm getting good rest in between.

In the beginning I went twice a week, now I go once a week. Also an advantage over an LLMD - I get to address my fears and flares weekly, instead of waiting a month or two between appointments and googling myself into a panic. It definitely helps to "stay the course" when you can talk to your captain regularly!

My entire experience can be found here:
https://www.healingwell.com/community/default.aspx?f=30&m=4031245&g=4108153#m4108153
That ended up being my own personal thread, but I meant for it to be for anyone using Classical Pearls. I have a friend doing the same treatment, but she reacts the exact opposite as me on many of the herbs! I'd love to have a compilation of experiences for support, as the greatest disadvantage is no one else to trade advice with.

Well I hope if you feel like dying you'll scale back your treatment! As you also said, it is not a race. I'm going slow for my tastes but I'd rather do that than push ahead and wind up further back than when I started.

saraeli said...

Ironically, now I want to go into a research rabbit hole about Classical Pearls....

I'm biased, but I believe it's a wonderful rabbit hole ;-) And not just for Lyme - for anything you would normally see a doctor for. Flu, cold, viruses, UTIs, I've fought them all off quickly while doing Chinese Medicine. My non-Lyme husband does it and didn't get sick this winter either (no flu shots!) It's the only thing that made a dent in his allergies (after $hundreds wasted on drugs, tests, dust mite control, and nasal surgeries)

I want to point out again that there is a difference between Classical Chinese Medicine (what I use) and TCM - Traditional Chinese Medicine. If TCM has not worked for you, you might find CCM much better.

In short, CCM is the very ancient, slow, patient-centered healing that is thousands of years old. TCM is the modern communist attempt at streamlining and simplifying CM to make it more "scientific" and palatable to Western practitioners. CCM gets brushed off as outdated and superstitious, but it's actually the ancient texts about "gu syndrome" - the natural equivalent of Horowitz's MSIDS - and its complexity that make it so successful for Lyme.

It's a paradigm shift for sure, but one that has been very good for me mentally (as well as physically).