Hi, been a while since my last post about my sister. My folks and I are currently working to remediate the mold in her environment, which has probably been a barrier to her improvement. One thing...
No, I didn’t see this before. I’ll look into this stuff. Thanks....
It wasn’t me who e-mailed. Do you know of any resources, though?...
Hey everyone, First off, a quick update: my sister started with a new doctor, and thankfully, she did not have to physically come into the office. Took a huge weight off our shoulders. Now, another...
I’m actually her brother, hehe. Thanks for the info on that book....
Hi all, I was hoping to get your opinions/advice. My sister, who I have posted about several times here, will be switching to a new doctor very soon, as her current doc is retiring. The first...
What were some of the things you did for neural calming and detox?...
Yeah, we’ve discussed this stuff before, but the thing is, I’m not sure what it is at this point. There do seem to be features that line up with mycotoxicity as well. I don’t know. I’ll take another...
One of the most prominent symptoms of my sister’s condition is extreme photophobia. She has to spend her days in mostly dark rooms, with only diffuse light emanating from adjoining rooms. I’ve seen...
My sister is seeing the same lyme-literate MD she has been since late November. He’s taking a mold and mycotoxin-centric approach. Phosphatidylcholine administration, 15 mL intravenously two days a...
She is living with my folks, and their place was air tested for mold, showing nothing out of the ordinary. Is ERMI really necessary? I thought that those tests are of debatable validity and can pick...
Hi all, No major progress yet, unfortunately, but some interesting developments nonetheless. Her current doctor, who we've been with for the last couple of months, is really trying to go after the...
Hi all, So my sister started with the new doctor. He actually believes that a lot of her pain issues stem from limbic dysfunction combining with immune issues brought on by the infection. He believes...
Hi Dcd, I was just reading that encephalitis can in some cases be fatal or cause permanent damage. I’m now worried about these possibilities. She’s had some of these symptoms for over a year now,...
She has actually tried LDN. It didn’t seem to do much, unfortunately....
Garzie, Thanks for your reply. That bit about some people never recovering really scares me. How prevalent is non-recovery, exactly? One other question: is lyme complex ever actually fatal?...
A few things I wanted to know that I thought maybe some of you would be knowledgeable about: 1) I am sometimes confused about immune issues with lyme. I've heard from some places that lyme complex...
Hi Kelly, thanks for the reply. We tried the Irlen route, and no luck. I'm pretty sure it's encephalitis-related, as I've said, similar to your case. We'll keep pursuing that angle....
Thank you. Will look into this....
Hi WbF, She has been tested for mycotoxins and was positive for some. The thing is, I'm not sure any of the previous doctors really dealt adequately with those. That's one thing that her current...
This post is regarding the latest with my sister's condition. The pain she experiences from what seems to be small fiber neuropathy is unrelenting in the absence of ativan (the only thing that really...
My sister’s condition, as I noted in a recent post, is currently dire. The pain from the neuropathy she has is so severe that she can barely function. One thing that is deeply concerning to me is the...
Hi dcd. Thanks for telling me about SFN in the first place a few months back. What she experiences really seems to line up with the disorder, and I'm more convinced than ever that she has it. My...
The seizures are not due to discontinuation of an SSRI. I know about brain zaps; I've had them myself. These are not brain zaps. I am certain that this is the seizure-like activity that I've read...
Here's the latest in my sister's (as well as my and my family's) ongoing saga... She is still dealing with tremendous pain. On a day-to-day basis, she gets small reprieves and short periods of...
An update regarding my sister’s condition… I am fairly certain, based on what a few users here have described, that she has small fiber neuropathy brought on by the infection. The doctor thinks the...
Quick question: We live in the Los Angeles area, and I am wondering if others here know good LLMDs in the area. Worth asking about in case the current doc doesn’t work out. Is there a good resource...
Nope, SFN or whatever it is started long before she began disulfiram. She's been taking disulfiram since early last month, I believe. Pelvic incident was last September/October. I'm not sure that...
Also, are there any medications that can lessen the pain from this condition that aren't addictive? She did try Gabapentin at some point and said it didn't really help....
We live in the Los Angeles area....
Interesting. Had not heard of this condition before. Yeah, it's possible that this is what she has. A question regarding the IVIG: do you know if that treatment can be undertaken concurrent with the...
Hi all, I had posted a couple times last year about my sister, who has had lyme for maybe 11 years or so, but was only diagnosed with it about two and a half years ago. Since being diagnosed, she has...
A short update: My sister's situation has not only not improved over the past couple months, it seems to have worsened. Every couple weeks, it seems, she has an episode of agonizing, debilitating...
So, my sister has now switched doctors and is on a different protocol, having discontinued Zhang after only about a month and a half or so. I have to get the details on her new one. As I said before,...
I still have to get the details of her lyme test. When it comes to protocols, the two she was on previously were the Cowden and modified Cowden. Think she was on both for about 6 months, but can’t...
I actually don’t remember all of the details at the moment. I’d have to ask her and get back to you. She was living with me for a while, but she now lives with my folks. A lot of the tests and...
I’m her brother, actually ;). We’ve only recently become acquainted with Buhner’s work, and have not specifically tried any of his protocols. I’d be interested to hear more from members who have...
Hello all, I’m new to these forums. I’m actually posting regarding my sister, who has been dealing with chronic lyme for about 8-9 years (although for much of that time, she didn’t know what it was...