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Going to Seek out a Consult: Lyme Literate Dr.

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Posted 10/4/2016 10:04 PM (GMT 0)
There is someone an hour and a half drive away that is lyme literate. I just sent a message to inquire about the consultation fee. This is so scary. I have so little savings left and was going to focus on treatment/herbs. But at this point, I really feel like I need to check in with someone who knows and understands lyme and co-infections. I think it is this mild relapsing I am feeling that is causing me to seek out an expert.
Posted 10/4/2016 10:08 PM (GMT 0)
I don't know how I call it "relapsing" in that I am not entirely symptom free - just feels like I am going backwards as I flow forwards. Did anyone else experience this in their process? Before they were symptom free, periods where old symptoms came back? What did you do? Did it require switching up your protocol a bit? Did you discover you had something else you needed to begin to target? So far I've targeted: lyme, babesia, bart, candida, fungus. I am wondering if I should consider mycoplasma.
Posted 10/4/2016 10:10 PM (GMT 0)
hmmm.. as I asked this question...something inside said, you aren't detoxing enough.
Posted 10/4/2016 10:16 PM (GMT 0)
I think that you need to change your protocol. It is good that you will have a consultation with LLMD
Posted 10/4/2016 10:22 PM (GMT 0)
I have had some symptoms come back...one of them being some 'head' issues - like the pressure behind my eyes.
So, I restarted the minocycline again...and it's getting better, but not completely yet.

But overall - I feel more 'better' than I was a year ago....so hoping I'm on the right track.
Posted 10/4/2016 11:35 PM (GMT 0)
Blueberry - thanks for the prompt. Girlie - thank you as well... curious what the outcome will be. I sent an email, and tried to call, but nobody picked up and there was no answering machine. That doesn't bode well.
Posted 10/4/2016 11:40 PM (GMT 0)
Multiface,

What city are you in?

I went to my internist, went on Doxcy (later than I should have), then went to an infectious disease doctor who said he specialized in Lyme. He didn't. I finally got an appt. with LLMD but thought the price was insane. The lyme angels on here talked me into keeping the appointment. I'm glad I did. It helps to have someone who knows these infections inside and out. It gives peace of mind. I really like my doctor so that helps.

Either way keep up the detox. You just reminded me I have to go do more...

Feel good and let us know what you do.
Posted 10/4/2016 11:47 PM (GMT 0)
I am in Santa Barbara, and from the information I've gathered, if you want help in this city, you won't find it, unless of course you are CDC positive. There was a naturopath in Ventura who said he was symptom free from his own lyme journey but my spouse put up a fuss about his medical degree..true, it was not from a very reputable place.... and..I'd have to buy 4 sessions total from him, and he gets you into using his herbs. I wanted to use Buhner suggested stuff.
Posted 10/4/2016 11:56 PM (GMT 0)
Multiface,

I'll trade living in a city with LLMD's for living in Santa Barbara any day of the week. I would totally go to the Naturopath. They really go through a lot of training. Also you can just say you prefer Buhner and don't want to buy her/his herbs. There are a few lyme people who do phone consults. I know mine does. He is insanely expensive but if you send him all your blood work/testing he will probably do a phone consult. There is also Dr. Raw (two more letters and rhymes with drawl) he does phone. Don't know much about him.
Posted 10/5/2016 1:09 AM (GMT 0)
Huddie - I want to keep peace in the family...so, I think I'll try the naturopath in Shell Beach... he was highly recommended by a woman I know whose daughter used him. Lyme can wreck havoc on relationships, and although we've both agreed to stay out of each other's medical business, I don't want to deal with any potential stress if I go back to the first naturopath. I think a degree from a reputable school is important - actually, and see his point.
Posted 10/5/2016 1:58 AM (GMT 0)
Multi-I absolutely love my LLND. He's in San Francisco. I'm pretty sure he will do a phone/skype appointment if you don't find someone you are comfortable with that's within a reasonable drive.

I remember a post you made a while back in a thread asking "What supplements are you taking"? You listed the supplements that you were taking and put in parenthesis next to a few of them (stopped taking). Is it possible that one or more of the supplements you have stopped taking has hindered your healing?

I think I remember the post because my supplement list is sooo long and sooo expensive and yet there's nothing I can remove at least not yet.

Just a thought. Email me if you want Dr info.

Janet
Posted 10/5/2016 3:57 PM (GMT 0)
jrpsf - if things don't pan out with the one in Shell Beach - I'll contact you! Also, I think that is an excellent thought, to re-consider some of what I am no longer taking. Part of it has been financial, cutting corners. I wondered if any of this could be just a phase of feeling worse to get better from the tinctures I made. Maybe they are stronger than what I purchased. one is cats claw and JN that I steeped together, and one is houttuynia - which so many here say is powerful. I worked up slowly, but not THAT slowly. Thank each and every one of you once again for the awesome support. I tell you, without this community, I don't know how I'd get through this.
Posted 10/5/2016 4:13 PM (GMT 0)
Shell Beach: Nope - simply can't afford it: $485-$600 for one visit out of pocket. I do that, I have no money for treatment: supplements/herbs, which is coming out of my dwindling savings. Private out of pocket, of course. I have to prioritize with treatment, and also taxes I owe right now for the disability I received when out for the brain aneurysm repair and side jobs I need to report. How incredibly discouraging. I embrace the path life is giving me, in this moment, and am even MORE grateful for the people here.
Posted 10/5/2016 4:15 PM (GMT 0)
You can also try contacting some of Buhner's recommended herbalists - if using an herbalist won't upset the careful balance in the family.

Is it possible that with the treatments that you have been doing, you have "uncovered" a different infection?

I had to laugh at your thought that you weren't doing enough detoxing - I sure hope you don't hear my (imagined) voice in your head!! LOL! That would be just wrong!! smilewinkgrin
Posted 10/5/2016 4:18 PM (GMT 0)
Traveler - that is an excellent idea! Ha, ha, ha - I can hear your voice in your head... oh my goodness... come on now.. YOU KNOW BETTER THAN THAT... I think when things begin to improve, human nature is to slack off and I think the thought that the treatments have "uncovered" a different infection is spot on. I need to process the disappointment and let myself cry a bit, then, I am going to see about contacting a Buhner herbalist. A nice gentle Gigong class should do the trick.
Posted 10/5/2016 4:28 PM (GMT 0)
Good for you! And yes, sometimes a good cry can be stress relieving!! This is all so very complex that it can easily turn into being very frustrating!!

And I too suffer from lack of detoxing from time to time. Then I get mad at myself for allowing it! LOL!
Posted 10/5/2016 4:54 PM (GMT 0)
Well - Trav - you gave me courage to shoot off a quick email. In my range to consult with a Buhner herbalist but I wouldn't be able to get help until 2017!!! and.. have to pay within 3 days of the consult. Some thinking to do...
Posted 10/5/2016 5:18 PM (GMT 0)
Make sure you check with a few of them - differing rates and you may be able to speak to someone sooner - and don't forget to ask to be put on a cancellation list!
Posted 10/5/2016 7:20 PM (GMT 0)
Great idea! The first I contacted doesn't have a cancellation list. I'll try the other individual listed on SB website.
you are full of so many good ideas! Back from Gigong, and feeling more grounded.

Post Edited (multifacetedme) : 10/5/2016 1:23:38 PM (GMT-6)

Posted 10/7/2016 12:19 AM (GMT 0)
Well - today I decided to make an appointment with a Buhner herbalist, even if I don't get to chat until 2017. Having that appointment will give me motivation, incentive, and something to look forwards to. My hope is, I'll figure out between then and now what I need to adjust in my protocol. The most cost effective way of getting counsel from an expert. I worked two extra days this month at work, and that should cover it.
Posted 10/7/2016 1:47 AM (GMT 0)
I just reread this thread (not sure why though! Ha ha!), and I'm glad I did.

Unless you use a specific formula so that you are sure to get a 1:5 ratio (or whatever), you likely used the folk method. This does require a little finesse in the dosing because your tinctures will never be the same strength, so you may need to adjust your dosages.

Even with this though, I still enjoy using the folk method for most of my tinctures.
Posted 10/7/2016 2:35 AM (GMT 0)
Traveler - how did you assess and adjust your dosing? I think mine is probably more along the folk method. I used a scale to measure out how much was a gram of the herb. I'm sure it isn't absolutely 1:5.
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