My First LL Dr. appt

So, I finally had my LLND appointment yesterday. The appointment was from 1:15 to 3:00 - and there was sooo much stuff we didn't even get to. The timeline of my symptoms took a long time, as I started back over a year ago....and he also did an exam.
He said I had some symptoms of POTS. My blood pressure goes down when I get up from a lying position, and I also have a bit of venous "pooling" (some redness on the tops of my feet).
I have proprioceptive deficits and abnormal Rhomberg. (In other words, if I'm pulled over in a road block, the Officer will think I'm drunk...lol)
He looked at my rash and decided to discontinue the zithro. Also discontinued my doxy, as he said I've been on it long enough, and he likes to change things up every 4 weeks - especially since I haven't seen much improvement. So, he prescribed Amoxicillian - 1000 mg 3 X daily. Also a script for probenicid to keep the amoxicillian levels high.
He wants me to go back on the Cat's Claw and Japanese Knotweed.

He thinks my adrenals need a lot of help. He says they're working way too hard and I'm symptomatic as a result.
He has his own concoction for adrenals (yes, I bought it) - called Restorative herb forumulation that I'm to take twice a day. It's a powder that I add honey to and make a paste and take twice a day.
Also something called psystabil (homeopathic drops for adrenals)and GABA for the adrenals. I bought those three remedies for my adrenals from him. I decided to just go with what he recommends, even though it was expensive.
The fourth supplement I bought off him was HMF Forte - he wants me to add this to the Bio-K for my gut protection.
He told me to not take the rest of my supplements for now - such as Vit D, Vit B12, B complex, etc. Just wants me to basically focus on the adrenal supplements and the gut ones so I don't get c-difficile.
I showed him something at the base of my neck - sort of in between my collar bone and my neck muscle. He said it was a swollen lymph node. kind of freaking about that!

So, it was an expensive couple of hours - I paid $400 for the visit and the supplements. I'm always declining the ND's supplements, and I decided this time to splurge and do what he wants me to do in it's entirety. He wants me to get the Japanese Knotweed from Source Naturals, which I will do.

He said he considers my length of illness (approx. a year) quite treatable. He sees many people who were sick many years before treatment. He's hoping that in the 4 weeks I'm on the amoxicillian that i will improve 40-50% - I hope he's right.

He also wrote a letter to my regular Dr. asking explaining that the diagnosis of Lyme is correct and explaining my medication change. He also told her about the exam and asked her to assist with some blood work on a monthly basis to check my liver and kidneys.

Good visit overall - even though it cost more than I anticipated.

Thanks, Trav.
I'm at the point now where I just need to trust somebody to help me heal. I may not be able to afford the supplements indefinitely, but hopefully long enough to be able to tell if they're helping.

He is thinking I have bartonella, too, but doesn't want to treat it yet. Wants to see the improvement with lyme first.

I am going to look up GABA, HMF Forte, and psystabil to see what they are.

Once we get past a certain point in this illness, we need to be able to trust someone to help us, and the only way you can find that someone is to not give up on it!! I hope that this doc is all that you need him to be!!

Double checking everything is a good way to understand what he is trying to do too. My doc actually appreciates my participation in my health care!! Quite the shocker since she is the first one I have come across in my area that felt that way!

I bet you are on your way to healing now!!! Congrats again!! I've been kind of holding my breathe waiting for you to post how things went!! LOL! I was sooo hoping that it would go well!!

Louise - I have been taking so many different supplements - that I've often wondered how the body even effectively uses them all. I also think that it can be hard on the liver trying to process all these pills.
So, I kind of like his approach of not taking too many things when I need to focus on my adrenals.

cheetah - My own regular Dr didn't know about my blood pressure changes - she never takes my blood pressure...so I'm pleased with his exam for sure.

I looked up the supplements - and they're for calming, settling down the nervous system, which in turn helps my adrenals..as I guess they work harder when your nervous system is in overdrive. I've always felt that my main issues with lyme is a nervous system on overdrive - constant buzzing/vibrating, nerve pain. And the chills/hot flashes/ are a result of an overworked adrenal system.
I get extreme reactions to things I shouldn't. Cry at anything minorly sad, get chills/goose bumps all day long from just seeing something on t.v, or listening to music. Can't stand anything on tv that's exciting. Just basically over-sensitive adrenals/nervous system. And I've always argued that this isn't something psychiatric based - I knew that it was physical - if that makes any sense?
So, the Dr. seems to be on the right track I think. He feels we need to get this area in check, so my body can heal.

I just looked at the Restorative Formula Dr. C. gave me - and it's not his own concoction - it's Woodland Essence brand.

He also wants me to get my Jap Knotweed from Source Naturals. I'm wondering if I can also get my Cat's Claw there, too. Nice to order from one place.

I checked out the other supplements he sold me, and they're basically to calm the nervous system...so it does make sense.
He's on track for sure...recognizing that we need to boost/calm adrenals and nerves.

Hey Girlie that is great to hear about you appointment with Dr.Chan!

I think his approach is pretty good that he put together for you. I think amoxicillin is a pretty decent antibiotic for Lyme. It is actually along the least toxic of all the antibiotics and I think that's why Dr.Chan has a tendency to use that for his patients. That is the huge plus side of amoxicillin, if you are not allergic then there are no real negative side effects other than killing your gut micro flora. Another good upside to amoxi is the molecule is pretty small and so it does pass into brain. It's also pretty good for the fluids compartment of the body like joints and inside the eyes. But it doesn't work for Lyme that lives in cells unfortunately. Also another downside is that it has a very short half life in the body, hence why you have to take it 3 times a day or every 8 hours. This pretty much means taking antibiotics before bed too instead of probiotics. I mentioned this to him and he said it can be taken twice a day too though.

It is my belief that is where the Japanese knotweed comes in. I don't think it really kills the bugs that lived in cells, but it kind of makes them uncomfortable and they come out of the inside of cells. Who knows that's just what I think but I didn't see any science. It is supposed to be the #1 herb for Lyme, even Beating cat's claw. Cat's claw is the #2 herb for Lyme and gives your immune system cells thorns for armor which gives them the upper hand.

So his approach is pretty good I think! Very low toxicity with a protocol like that. BUT, you are using dual intracellulars right now so your bartonella is probably kept down. You may notice your bartonella symptoms flare up? that is if you have that. But Japanese knotweed and cat's claw is also is great for bartonella so who knows?

Hopefully it works! At least this approach won't be so hard on your body!

Girlie this is really great news, so glad you got a thorough exam and somebody who seems knowledgeable. Can't wait to see your success post on how well your starting to feel. Awesome news.

WHOO-HOO Girlie Girl!! I was wondering how your trip went to the llnd! I had said a quick prayer the other night when we were replying back and forth to one another on here for you to have a safe & comfortable trip to and from your doctor

Also, I hear ya, its like the appt. is never long enough to cover everything...but it sounds like ya'll made some great headway!

I'll certainly be taking a page from your book regarding the adrenal issues. I know alot of people with lyme have that and Im pretty sure I fall in that category. Please chime-in in the future here on HW if the supplements are helping you. I have yet to address the adrenal's in any way and would love to hear what works/doesnt!

xx's
-Courtney