Need Help/Advice

Hi All,

I was recently diagnosed with lyme from two Western Blot tests.

I saw a LLD last week and he confirmed the fact that I have lymes disease for the first time. I have been sick for an entire year, and I didn't know what the problem was. Anyways, he had me take more lyme testing in order to find out whether it's "active" lyme or not. I didn't understand why more testing was necessary after I already had two tests confirm that I have it.

In the mean time, the lyme has been eating away at my brain while I wait for results for this test. I feel like I'm going to loose my sanity before I get this test result back. I've been waking up in the middle of the night with this schizo episodes. I don't know who I am. I was searching around my room last night for a box that was talking to me. I thought someone had told me I needed to find this box, but I didn't remember what he told me to do with it. I had to really think hard and rationalize the fact that this was just some sort of strange dream that I was taking out of context, and I eventually came to. I felt myself going into one of these dreams again tonight where I can't remember who I am.

I can't read anymore. I used to be an english major, but I can't even read books anymore. The lyme must be eating away at the area of my brain that processes reading. I read technical manuscripts for work as my job (before I quit), so I wonder if I will ever be able to go back to work again.

I couldn't even mow my lawn the other day, I got so tired. I have bells palsy, and lots of muscle twitching all over my body, neck pain, and the list goes on and on.

Anyway, I was wondering if someone could provide some advice for me. What can I do in the mean time while I'm waiting for these tests results? Should I start an herb protocol? I did buy some doxycycline off the internet a couple months ago because I was suspicious that I had lymes disease. It came from an Indian lab. It looks legit, but I don't know. Maybe I should take this?

I'm getting pretty desperate to protect my brain from this disease. I feel like I'm going to end up in an institution if I don't do something really soon. Any help would be appreciated!

Thanks

Hi gfields! Welcome to the forum, sorry it's not under better circumstances :(

OK, so regardless of what the doc interprets from the test results, given your current symptoms you have an active infection that requires treatment ASAP!!

Many people here have both the pysical and psychological symptoms you describe - you are not alone!!

First of all it would be a good idea to read the info in the sticky post at the top of the posts page 'new to lyme' - especially the posts about detoxing, which you should be starting right away - before you start any treatment.

It won't do any harm - in fact in my opinion it would do you a lot of good - to get started on a herbal protocol while you doc is faffing about. I am taking Buhners Herbal protocol. It is working for me, but everyone is different and others will be along soon to give their opinions on others, I am sure.

Do NOT start any treatment, herbs included, aggressively. You have got to start slow and build up gradually and detox, detox, detox, to get those toxins OUT!

Flagyl is usually used for the cystic form of Lyme, rather than Bart, just so as you know.

With the proper treatment you WILL get better. And the good folks on this forum are full of great advice whenever you need it.

Keep posting, asking questions, we are all in this together!!!

I was just watching this youtube video. It's heart wrenching to see what this couple went through in their struggle to get better, but finally towards the end it looks like she started to get better. She went to a lab and had her blood analyzed under a microscope and they found the parasite that caused her disease. I wonder if having blood analyzed for parasites is the best way to identify your specific illness. I guess I know my illness is definitely lyme being that it came back positive, but after lyme is cured there could be hard to track down co-infections:
https://www.youtube.com/watch?v=So2K68r8pOY

Hey CD, Yes, my doctor is ILADS trained. I'm not sure why he didn't start treatment. He seemed a little disconnected during our first meeting. He came to the meeting a half hour late, admitted he didn't look at the 30 pages of blood work and information I had sent him 2 months prior and he fiddled around with a laptop for the first 20 minutes of our meeting without saying a word to me. Seemed kind of unprofessional, but maybe he was just having an off day. I'm not sure. Other people have told me he's a really good doctor, but we're all only human after all and we all have bad days sometimes.

So, did you also find that the Cowden protocol wasn't particularly effective for you? That seems to be the sense I've been getting from reading a bunch of posts on this forum. His youtube video was very interesting when he presented the difference in the spiroketes when taking his supplements. It seemed to really wipe out the biofilm. But maybe it's only effective in a petrie dish and not in the human body. :shrugs:

People seem to be having good results with Buhner and Jernigan. Or at least that's my impression after preliminary poking around on the forum. I haven't read up on White's protocol yet.

Thanks for the warm invitation! Everyone is very friendly on this forum! :)

I started on Buhners protocol as it was the easiest to get shipped to Greece and I wanted to get started! I will say it is having results for me, though like has been said, everyone is different.

I started on his Bartonella protocol, and it certainly was bottom kicking, lol. I had to stop for a while over the summer but am hoping to get back on them soon.

I also find that one of the biggest problems with my brain not behaving as it ought was not doing enough about detoxing. Honestly, I didn't even know I should have been before joining this forum and it certainly made a difference. Make sure you get on that side of things straight away.

That and I also take some of the 'extra' supplements, like zinc, that he recommends. I teach kids, I NEED my brain to work, lol.

I hear you on the not being able to read - that scared the cr*p out of me. And those mad, mad dreams...nope, no fun at all!

I hope that the info and folks here, coupled with your doc, is the start of your healing process.

gfields you are not alone. I would wake up and think someone was in the house and was going to come upstairs and shoot us while we were in bed. I would lay in bed and be extra still and listen hard. I would exhaust myself being quiet and listening. We have been in this home for 26 years for goodness sake and it is very safe. Just lyme.

I am a part-time editor for an author. I could not read and that scared me. Once I started protocol I became better and luckily for me the author was still in the process of writing and not needing editing. Now I have her new book and I can read, but only for about an hour and I have to get up and move around before I can start back reading.

Maybe give you doc a call and at least have the receptionist tell him you are anxious to start killing whatever is inside you. LOL! Hopefully he/she will call you back.

Thanks all! I really appreciate all of this information. It's very helpful.

I called up my doctor and asked him to prescribe me doxy. I just popped my first abx pill. It will be interesting to see how I react to it. I'll be taking a probiotic that is 2 billion rated I believe. I took some water with lemon for detoxing. I was instructed to stay out of the sun. I'll take a epsom salt bath later on today. I have to take doxy twice a day according to my doctor. We'll see how it goes!

I think I might purchase some of Cowdens herb tinctures and see how that goes. This is all new to me, but you have to start somewhere, right? I think in his video he mentioned that Samento & Banderol bust the biofilm, so maybe I'll start there.

Thanks again everyone! I'll keep you guys updated on my experience. :)

Thanks for the update!! Be sure to let us know if you have questions or if things start changing!!