Thursday, December 16, 2010

Nutritional IV

On Wednesday I had my first nutritional IV per recommendation from my new and wonderfully nice LLND. It was a mineral IV with extra vitamin C, 15 grams, and a glutathione(sp) push at the end. The IV tech was really good and I didn't even feel it. I kicked back in a big comfy chair and let the hot pink bag of liquids go to work. As I understand it it's supposed to help with detox and making sure I have all the essentials since I'm not digesting properly.

I was going to sleep but there was this awesome old guy (84 years old, but looked late 60's at most) on his smart phone making dates with ladies while getting an IV to keep himself "young and healthy" and I was too distracted to sleep. I felt a little bit better at first, but then on the car ride home I felt worse and worse until I finally got home and slept for about 3 hours. I felt a little better after that. Went to bed early and slept in late, and still I'm tired. All these new meds are causing me to herx big time. I'm just pushing through and doing what I can despite the burning knees and fatigue. I have a really good feeling about this Dr. and his treatments. I really good feeling.

Sunday, December 12, 2010

Crazy Rash

WOAH that was weird!

Last night as I was getting ready for bed I started experiencing new symptoms and they came on really fast. At first I was noticing that I wasn't cold at all. My hands and feet were warm HORAY!! Then, my face started feeling hot and I had a burning sensation that traveled from my nose up my forehead and then across my cheeks into my ears and with in a minute or so my forearms started burning. At first I just took notice, but then the burning and heat got worse rapidly and I felt like my face was swelling around my nose and forehead and certain parts of my face hurt to move.

I looked in the bathroom mirror to discover that my entire face and chest were covered in a BRIGHT RED splotchy rash and I mean RED. Weird this all came on so fast. My husband then noticed that my entire body was covered in this splotchy rash. It seemed to be worse on my face and major joints. Then, I started shaking. It wasn't because I was freaked out, which I was a little because If felt like my face was swelling around my nose and eyes. Even so I totally understood that with Lyme anything can happen. This was new though and I hadn't heard about it before so it seemed strange. We considered taking me to the ER, but they never know what to do with us Lymies so instead I called my friend Ashley at 11:30 and woke her up.

She was able to tell me that the same exact thing has happened to her several times and that it is some kind of weird reaction to the samento I'm taking. I just need to lower the dose for a bit and hopefully it will go away. She said the shaking was adrenaline and that it should all pass in about an hour. She was right, within an hour I was sound asleep and no rash today. Wow that was a weird one.

I don't think you really get the whole effect from these late night photos, but here they are.

Saturday, December 11, 2010

Going over the hill for a new Dr.

On the first of the month I went over the hill all the way up to San Francisco to meet with a brand new Dr. This Dr. is a naturopatic Dr. that was recommended to me by a friend who is almost done with Lyme treatment. There is another Dr that she sees whom I'd also like to work with, but he has a waiting list a mile long. I'm on it, but it'll be a while.

So anyway, I really like this new guy. He knows what he's talking about, totally understands Lyme Disease, is down with both so-called western and alternative medicine as well as some European perspectives on health and meds. But mostly he's a really nice person. He asks great questions, takes great notes, and really listens to everything we Lymies have to say. He's simply a good person and I could tell that right from the start.

After asking me lots of questions and reviewing all of my tests from labs and my naturopath in Sonoma County he was able to determine some things I had already been told before or suspected about my current health state. This was good because he wasn't coming out of left field with his evaluation.

So...he says that I've for sure god Lyme, but it's only a piece of what's going on. It's hard to say what comes first other issues and then Lyme can invade easier or Lyme and possibly leading to or causing other issues. Either way, he says I have a lot of things out of whack, but for now we're gonna focus on the main issues which are my digestion being totally messed up, my liver not working fully and the Lyme and co-infections.

He said that having my guts so out of whack plays a big role in why I feel so crummy. I didn't fully realize that 70% of our immune system is in our guts. Unless I get that under control I'm not going to get better. I've got candida, bacteria, and he suspects some sort of parasite(s) as well. Not surprising at all. I have to do a stool analysis so he can confirm and get details about it all. As part of this I'm not properly digesting and absorbing food or meds. which is why I'm so thin and feel the need to eat ALL THE TIME. Essentially, I'm malnourished because I'm not getting the nutrients out of the food I'm eating. It wouldn't matter how well I ate because I'm not digesting it. This is also why he's not putting me on traditional antibiotics. I am way too imbalanced and I know candida is a big problem for me because I seem to always be fighting off an oral thrush infection. All this yeast can cause leaky gut syndrome and IBS among other problems, so at least for a long while, we're not going to use prescription antibiotics because my gut can't handle them.

To help with this, I'm sticking to my list of foods not to eat, taking new probiotics as well as rotating them, and my new meds are tinctures instead of pills so I have a better chance of absorbing them. I also have to take all my meds on an empty stomach, which is by far the hardest part because I'm always hungry and not eating for at least 2 hours is hard for me.

In addition he suggests that I do a series of nutritional IVs to get some essentials in my system. I have to do these in SF every week for 4 weeks starting this coming week. Not really sure how I'm going to get there, but I guess I'll figure it out.

The rest of my current plan includes some additional testing including some tests I haven't done yet. I'm starting the modified Cowden protocol for Lyme with tinctures of Enula, Cumanda, and Samento. Therabiotic, VSL 3, and florastor are for my tummy. Naicin I think was also for the guts. Nutritional IVs to feed me and reboot my system. I'm so looking forward to those. I think they're gonna make me feel better. I'm also adding in Apo Hepat for liver functioning. He removed a few things from my current list of meds and so I'm not really taking much more then I was before. Already in a week, I can tell they're working cause my gut is reacting to the probiotics, and I think I could be having a mini herx from the tinctures. I know I've been run down and feeling feverish these last few days. summary, I like the new Dr. I think his assessment is right on, he called for appropriate testing, and his recommendations make sense to me. I think I've found a winner. YES!!!

Thursday, December 9, 2010

Shopping for a good cause

Please consider checking out all the wonderful goodies being offered at the Lymenaide Holiday Bazzar. Several artists have gathered their work in one location to share with you. All of the artists are people living with Lyme or those who have loved ones living with Lyme Disease. Your purchase from their shops will help to pay for medical bills, living expenses, or become donations to organizations doing good work in the Lyme community. Please take a look and if you see something you like, or something you think would make a great gift, consider putting your money to good use. I can not tell you how much every sale means to these wonderful people.



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