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.

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.

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.

So..in 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!!!

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.

http://lymenaideholidaybazaar.blogspot.com/p/welcome.html

Thanks,
Keri

New Dr. Rant

Yesterday I had another appointment with the new Dr. in Carmel. It's official, I don't like him and I need a new Dr.

He ordered a bunch of tests that I already had done and he ordered them from labs that don't have good reputations in the Lyme community. They came back negative, of course, because they're not very accurate. Not to mention that the tests are checking for antibodies to the bacteria and when your immune system is as beat up and broken down as mine is you no longer produce enough of the antibodies to test positive, or at least that's how I understand it. He said that he can't treat me with IV drugs because he can't prove that I have Lyme and so my insurance won't pay for treatment. I don't even want IV drugs. I don't think they're a good idea for someone who has problems with candida. And what does he mean he can't "prove" i have Lyme? I tested positive with my naturopath, twice, I was bitten twice, had red rings both times, get big herx reactions every time I take antibiotics or up any of my killing meds or supplements, and my CD-57 score is super dooper low. What else does he need???? I mentioned that to him and he said I have a point, but he brushed me off and said I probably just have an auto-immune disorder. I've already seen 20+ Drs. and been tested for autoimmune issues. I don't have one! he even said that I don't have any symptoms to point in that direction, but still he wants to look into testing in that direction. HA, I'm not going back to see him!

Also, he has zero patient-Dr. skills and left the room several times mid sentence and didn't explain where he was going. I was checked in, actually someone on the phone just pointed to a door, to the infusion room which contained several infusion stations, a guy working on a computer and a secretary who was on the phone and talking about other patients and they medications and such. WHAT!!!!!!!! I learned all about another lady and what drugs she's taking. I even know what lab she uses for her tests, what test she got and how to spell her last name. So not cool.

Then he topped it off my telling me a bunch of BS about why I shouldn't be doing the salt/C protocol only seconds after asking me what it was because he had never heard of it. Don't talk to me about something you've never heard about! That's crazy. And he told me that it was bad for me to take in that much salt right after he told me that my body can't become saline because the body regulates the amount of salt it allows into the bloodstream and never lets it get past a certain amount, then he suggested I have my sodium levels checked. What a wacko. Please do not go and see him unless you have a screaming positive test result and you want the one size fits all IV treatment.

So I'm on the hunt for a new Lyme Literate Dr again. Good thing I've got my new friend Ashley who is just about done with her treatment and mostly "cured" to point the way. I'm now convinced that I'm going to have to drive over the hill to get the real treatment I deserve and need. I've got 3 drs. in the Los Altos/Redwood City area that I'm trying to get appointments with, but they've all got long waiting lists and the first appointments are always expensive. I'm squirreling away as much money as I cam, but it's hard to come up with several hundred dollars when your only income is from selling $15 earrings. I know though that the universe will take care of me and provide me with just what I truly need. It always has before.

Thanks for being there on this journey with me. It really helps to have good friends and family along the way. We will all get through this together. I know it.

My Birthday Wish

This time of year people start asking me what I want for my birthday and then later for Christmas. I have a list of material things I would like to have and I've already been given a few of them. (thank you)

But, what I really truly want if I could have anything is to be healthy again. The pots and pans, fleece hoodie, cookbook, etc. that I want would all be so wonderful, but they won't help me get better.

I don't think this new Dr. is going to end up being "the Dr." What I really want is to find a really good Dr. that I can stick with for the long haul and come out the other side as healthy as possible. I've been checking in with others who have Lyme and I think I've got it narrowed down to 2 doctors in the Los Altos area, just over the hill.

So what I REALLY want for my birthday this year is to be able to afford to see these Drs. with great reputations who have helped people I know get better. Please if you were considering a gift I'd like to ask that you donate to my treatment fund instead. I know it may seem socially unacceptable to flat out ask for money, but I've tried everything I can think of to fund raise for myself and I'm out of ideas. I just don't know what else to do.

I already have $200 set aside and I need $240 more. That's my goal $240 dollars. If everyone who read this donated just $5 I could schedule my first apt. with one of them. I'll keep you updated with how it goes.

I'm hoping that next year I'll be able to throw a party to celebrate being healthy again.

Thanks for all the little thing you all do to offer support. It means a lot. It really, really does.

How it's been going with the Rife Machine

So I've been keeping notes on how things have been progressing with the Rife machine I am borrowing. I've been asked to share about it and so thought I'd just post my rife journal here so those of you who are interested can see what it's like to use it. So far I think it's going fine and I'm getting the hang of it. I'm starting to see patterns and like that I can back off if I have something to do and need to feel good for a day or that I can hit it hard if I want to be more aggressive. Meanwhile, I wait for blood work results from the new Dr. ********Warning: possible TMI********


9/17 ​Started Back on OXY-GEN to kill candida. Also started Rife machine for
Lyme. 1 min each: 432,800, 4200
only noticed a slight energy while using it

9/18 decent amount of energy

9/19 hooray another good energy day, functioning alright on little sleep
1 min each: 432, 800, 4200

9/20 Tired and sore all over, stiff neck​

9/21 pain, brain fog, fatigue, stiff body, and sore feeling in muscles
1 min. each: 432,800, 4200 (Lyme Disease set)

9/22​ overwhelmed easily, tired, cranky, easily flustered, oving slow, MAJOR
PAIN, started Beta Glucan in evening

9/23 Pain, pain, pain, shaky hands, tired, headache nearly all day, big time brain
fog, clumsy
1 min. each: 432,800,4200

9/24 dizzy, lightheaded, pain, overwhelmed, stinging pains

9/25 feeling a smidgen better

9/26 felt better today, had sustained energy

9/27 pain, slow, brain fog, burning knees, tingly hands and feet
1 min each: 432,800,4200

9/28 a little less pain

9/29 positive attitude, moderate amount of energy
1 min each: 432,800,4200

9/30 tired, mental confusion, slow processing mentally

10/1 tired, difficulty focusing, especially while driving, driving is getting scary

10/2 upped dosage to 2 Beta Glucan

10/3 sick feeling, nausea, headache, light headed
1 min each: 432,800,4200 (Lyme)
1 min each: 625,690,864, 1064 (Lyme variants set)
I did these in sequential order and I accidentally forgot to use the grounding
foot plate. I felt affected while using it for the first time. 625 made me
feel good and happy, 864 made me feel sick, 1064 gave me a headache and the I
finished feeling light headed



10/4 felt like I was having a mini herx, felt toxic and sick, nausea, headache,
really tired and have been taking naps

10/5 1 min each of all 7 frequencies

10/8 oops, forgot to take notes the last few days. felt goodish today
1 min each, but in the order the are show for each set not sequentially

10/9 pain, tired, overwhelmed feeling, feeling like a small herx

10/10 felt really icky, light headed, nausea

10/11 nausea, sore knees, lightheaded, tired, headache for 2 1/2 days straight

10/12 felt a little better

10/13 1 min for all freq. in both Lyme sets, 625 feels good, 690,884, 1064 feel
funky, but generally felt fine afterwards, didn't notice any herx like
reactions this time. thinking it doesn't work as well on the shoulder, but
better behind the knee with more skin contact

10/18 forgot to write again, dang it!, pain is back as of today

10/19 tired, but feeling happy
1 min both sets

10/20 tired, ran out of Naltrexoneand not sleeping well, very itchy while sleeping

10/21 same as yesterday

10/22 1 min each of just the Lyme variants plus 5K for 1 min.

10/23 felt pretty good

10/24 felt fine, but really cold and super hungry all day long

10/25 super tired all day

10/26 consuming fatigue, so tireed and weak feeling, difficulty focusing,
difficulty driving, overwhelmed by small tasks, clumsy, pain in left arm,
headache, want to cry, slept for 12 hours
1 min. each Lyme, variants, candida, and added 5K, 10K
432,800,4200
625,690,864,1064
450,465
5K, 10K

10/27 loose stool w/ mucus, started on 3 Beta Glucan, arms and feet falling asleep
easily, couldn't fall asleep until 2am, having a hard time spelling and
typing

10/28 so far not feeling that well.

New Dr.

Hello folks,

I had my first visit with a new Dr. I saw Dr. W in Carmel. The visit was really mostly a lets say hi visit. He briefly flipped through my ever growing binder of medical information. He said he's going to copy it and read the whole thing before my next visit. Based on what he knows so far he seems to think that I most likely have some form of borellia bacteria infection, but not Borellia bergdorferii(sp), the species that causes true Lyme Disease. If this is the case and I have a related bacteria we might never know for sure because there currently are not tests for all of the realated bacteria. Which I guess means I sorta have Lyme, but sorta not also. Big picture the only difference that would make is that insurance and disability could turn out to be more flexible becasue it won't have the stigma attached that Lyme has.

I have another apt. with him next week on Thursday @ 1:30 at which time he'll let me know what he thinks after reading all of my paper work. I suspect he'll order more tests and then we'll go from there.

I've heard and he also mentioned that he usually treats with 42 consecutive days of IV antibiotics. I'm not looking forward to that and would like to check into one other Dr. before I decide what I want to do for the next step in my treatment. However, the other Dr. that I've heard so many great things about is $440 for the first visit and I haven't quite figured out how to come up with that money just yet. If any one has any good ideas for a fund raiser please let me know. I could use one.

FOr now, I'm continuing with the RIFE machine. I'm up to 7 frequencies for a minute each and I'm getting a reaction around the 4-5 one and then a mini herx for 1-2 days after, feeling good on day 3 and the going for it again at the end of day 3. I'm working towards more frequencies, more often and for longer. I'll keep you all posted on how that goes.

Driving lately has been a bit scary if I try to go somwhere when I don't feel good. I would love some help in getting to my apt. and to have another pair of ears listen in on the the info he gives me. It's a lot to take in. If you can go with me on Thursday I'd really love it! Let me know.

Thanks everyone for all your support.

Catch up

It's been a while since I've posted. About a month I think, no wait it's been 2 months! Aah, how did that happen? There's been a lot going on for me. I'll just summarize it and then hopefully return to more regular postings.

In general I've been feeling worse these days. My symptoms are getting worse and I feel like I'm back to where I was a year ago. My knees are burning, I'm stiff, and my arms are weak/numb/tingly/painful, esp. when I'm sleeping. I'm not sleeping as well because my arms hurt so bad and that's affecting me during the day.

I had my last few apts with my LLMD before she moved to the east coast. I tested really high for mercury and lead and she put me on a med called DMSA to detox them out of my system. She thinks they were clogging my liver and kidneys causing me to get really sick when I took antibiotics because there was too much to cleanse out. DMSA is nasty and I was supposed to take a whole buck of other nasty things along with it, but didn't do a very good job of that. I don't feel any better since taking four rounds of that med. In fact I think I feel worse.

I also had an ulcer in my esophagus near the center of my rib cage. I had to have a scope put down and a biopsy done. It came back negative for the usual suspects. I think it was like a canker sore, just in my throat. I think this because I got a couple really bad ones in my mouth after drinking a bunch of almond chocolate milk with the whey powder I was supposed to take along with the DMSA. Pretty certain I'm allergic to almonds. They make my mouth hurt every time I eat them. It eventually healed and I learned to eat a wide assortment of really smooshy foods that I normally don't care for.

My CD-57 test results that measure the health of my immune system came back at 22!!! That's a bit scary given that it's my lowest score ever. A score in the teens is a red alert and a single digit score causes the DR. to tell you to start making plans cause you might not come out of it. 22 was a shock. I thought I'd still be hovering around in the 50's. I was wrong. At least it verified how I'm feeling. So we decided to put me back on the antibiotics again at least until I saw a new dr who would make a new plan for me. I took them for about 10 days and I had severe diarrhea the whole time. I got so dehydrated, skinny, sick, and weak. I was barely getting dressed and showered every day. In fact I don't think I was. I drank a ton of water, protein shakes, ate well, doubled my probiotics, etc. and nothing helped so she pulled me off of them thinking that we've caused a major imbalance in my digestive system with all the meds I've been on. That and the DMSA as well as the Vit. C in large doses adds to the symptoms as well. Oh well, I thought it was time, but I guess I'll have to wait a bit longer until I'm done with all these other meds before I can get back on antibiotics.

Also my LLMD said that she found it weird that I'm doing so many of the right things besides antibiotics that I shouldn't be getting worse this fast. She said with all the cat's claw, salt/C, artimisin, oil of oregano, etc. that I should at least be stable. She suspected that I have a something a little different from Lyme Disease. Something called Borellia Hermsii which is still a tick born illness, but a different species of tick and bacteria which gets a different diagnosis and treatment plan. She sent me to get tested for it saying that everyone she sends comes back positive. I came back negative. Hum.

She's gone now and she recommended that I go and see a new Dr. in Carmel. He's from the east coast and has recently moved here. He's an Infectious Disease Dr. and I've heard that he's really good at figuring out exactly what is going on. I hear that he takes insurance and is willing to treat chronic Lyme. That's incredible given the political climate right now surrounding Lyme. I've also heard that he is pretty old school, and most often prescribes 42 days straight of IV antibiotics in his office. Some of the other local lymies are going to see him for diagnosis and investigation of their illnesses, but are skeptical of his methods for treatment given that most of the success stories are from people who mix a wide variety of methods both modern and traditional as well as new age. Cover all your bases and hit it from every angle possible. I think that's the way to go as well.

Well, I have an apt with him on the 11th of Oct. and I'm really curious what he's going to test me for and what diagnosis and treatment he'll suggest. I'll let you all know what happens.

For now, I'm trying something called a RIFE machine to kill off some of the buggers. A Rife machine is a simple low voltage electrical device that can be tuned to specific frequencies. The idea is that you tune it to frequencies that will disrupt and kill the bacteria. The only side effect is the herx reaction that occurs after a big die off and lasts until your body can detox all of the dead bacteria and their toxins. It was invented to cure people of cancer and it worked. Lost of people all over the world have cured a waide variety of things with it. I'm borrowing it from a friend who says that she, her brother, and her mom all cured themselves of Lyme with it. And from what I can tell she had it worse then me. She said that she used the Rife, a supplement called beta glucan ( helps immune sytems to produce more fighter cells, T- cells), a good clean diet, and a good detox program. She said she got really sick and then gradually got better and has been great since. Rife is listed as one of the top 10 treatments for Lyme, I've always wanted to try it, and there are several people in the Lyme support group who use it. So for now, that's what I'm doing along with the beta glucan and being stricter with my diet again. I hope it works!

I guess that was a bit more then a summary :-)


For more information of the use of Rife Machines for Lyme check otu these links:

http://www.lymediseaseresource.com/How_Rife_Machine_Works.html



http://www.lymebook.com/lyme-frequencies-preview#_Toc92354707

http://www.newmediaexplorer.org/chris/2005/03/31/lyme_disease_rife_machines.htm

I'm badass!

Sometimes I just want to scream out "Leave me alone! You don't know how it is! Every day is a battle for me! I'm happy to be doing as well as I am. You don't have any idea what this is like! Just leaving the house is like packing for a long trip! Please don't ask me to do more for myself, I'm already doing A LOT!!!, etc. etc. etc." Sometimes I feel like people see that I'm not that much better and if only I'd do XYZ then maybe I'd be better, happier, fill in the blank. But really I'm super happy considering and I feel like I'm doing a lot and surviving a bunch of yucky things and as an fellow Lymie put it that makes me badass!

Check out her blog post that explains 25 reasons why Lymies are badass. I'm hapy that I don't have it half as bad as she does.

http://networkedblogs.com/6nG6O

Bug Sur 2010

I think we're going to be making a trip to Big Sur an annual summer event. We went last year and again this year and I don't think I'll ever get tired or bored of that place. It's so beautiful.

This year we had family and friends join us and it made the trip even better. Roberta, Emiliano's mom, stayed every night and drove to work in the mornings. His dad stopped by for a while to banter with us and have lunch with his wife at Nepentehe. His uncle Mike and cousin Kate came along as well. Kate is 13 and had never been camping before and Mike hadn't been since he was 15. Our friend Jordan stopped by with her two lil cute ones. A good time was had by all.

This year was like the wild kingdom right outside our tents. Here's a list of what we saw
~ condor
~ hawks doing the classic hawk screech
~ turkey vultures
~ ground squirrels including a very obese or pregnant one
~ grey tree squirrels
~ stellar jays
~ raccoons
~ and an all too close encounter with a skunk who was trapped between us trying to get into our ten and two raccoons who were trying to eat our trash

The last item resulted in mandatory look out buddies for midnight potty breaks. Like I said, wild kingdom right outside our tent.

We found a new spot that was off the beaten path and had an awesome swimming hole in the river. I can't tell you were it is cause it's a secret. Ha ha.

All in all it was a great trip. I mostly slept, ate and traveled from one sleeping or eating place to the next, but at least it was beautiful and I got out of the house and got some exercise. So what if I hiked a mile then slept an hour then hiked a mile back.

Here are some photos to prove we were there. Check out my awesome outfit.

Looking for a new Dr.

I got a letter in the mail today explaining that my Lyme Literate Dr. is moving to the east coast. What's up with people moving back east these days? Anyway, that means I have to find a new Lyme Dr and quick. It likely also means traveling and a higher cost per visit. Hopefully this will all work out quickly and maybe this new Dr., who ever it turns out to be, can help me to get better faster. What a bummer. I really liked her.

Not so good of news from the DR.

Well, I went to see my Lyme Literate Dr. yesterday and received news that is a bit of a bummer. My CD-57 test results have dropped again. This means that the specific part of my immune system that deals with the Lyme disease is getting weaker. At one point it was up at 69, now it's down to 22. I have to stay in treatment until it stays around 200 for a few months and I feel good. This means that the salt/C thing hasn't been helping enough and I'm likely going to have to go back to some antibiotics in combination with the supplements and salt/C. She also told me that when people get sort of stuck in their treatment it's often due to heavy metals gumming up their kidneys and liver. This reduces the body's ability to detox the Lyme bacteria and toxins. She's ordering some heavy metal testing for me and I will likely have to take a chelator(sp) to help clean out the metals in my system. I already knew that I had a problem with heavy metals from the testing I had done with the naturopath and thought I was doing enough to take care of it, but I guess not. So, we're sorta back to the drawing board and going to be trying some different ideas. I hope it works cause I'm sure ready to feel better.

Just out of curiosity, I got a quick reading done while at a psychic/craft faire this last weekend. I don't know how much credit I give this kind of thing, but it was interesting. She said that I'm a hard worker who is aggressively working on this issue and I'm doing everything right and that she sees an end to it all in the near future and that in a matter of months I should be really healthy again. She also said that the universe sent Lyme my way to get me to wake up and start paying attention to my body because it needed to be taken better care of. That's interesting because i really believe that everything happens for a reason and I couldn't figure out what the reason for getting Lyme was other then having the time to discover my inner artist.

In any case, I'm willing to try whatever because I really want to be myself again. Wish me luck, please.

Find out more about the CD-57 Test HERE

2 years and why I love my husband

Today is our 2 year wedding anniversary! We had a really nice, simple, calm, beautiful day together. According to tradition gifts for the 2nd year are cosmos and cotton. Emiliano got me lots of beautiful cosmos and helped me plant them in the garden. He also got me a gift card and took me shopping to buy cotton shorts which I really needed because nothing from last summer fits anymore. Too small. We also had lunch at the Center Street Grill, relaxed in the sun, and saw Old School at the Crepe Place. A fun day indeed.

I spent today thinking about why glad I'm married to Emiliano and it was easy to come up with lots of reasons. Here are 10 in no particular order and not necessarily the top ten, just ten.

1. He is funny and makes me laugh
2. He plays hard and works hard
3. He makes better falafel then I do
4. We both have vintage Schwinns that are really cute when we ride together
5. He tries really hard to make life good for us
6. He is patient with me and understanding about my health ups and downs
7. He is a good cuddler
8. He supports me in a million ways
9. He does all the heavy lifting
10. He pretends to love every single pair of earrings I have ever made and that's a lot!

Unpredictability

One part of Lyme that I find challenging is the unpredictable nature of it. For example, I have been feeling awesome for the last few months. I've been working hard, getting things done, having a good time, getting out and about, sleeping well, nearly pain free, and managing to have a decent amount of energy. Then, from the depths creeps up insomnia, knee pain, fatigue, stomach funk, headache, and general funkiness. Booooo! Go away you are not welcome in my body!

Over time I have figured out that certain things make me feel worse and that certain things help me to feel better. I try to keep up on the things that make me feel great, but even so, no matter how well I take care of myself the funk always returns and I never see it coming.

I know this is hard for people in my life as well. I have a hard time committing to things in advance and can only participate in certain types of events. My social life is a shadow of what it used to be. My husband never knows what he's returning home to. One day I might be dancing around the living room and the next week I'm flat on my back watching movies all day long.

I don't feel bad for my situation. I hope no one else does either. I understand and accept what is happening. I am just challenged by the return of symptoms which had previously vanished. It would be really nice if I could just slowly get better and better instead of being on a physical and emotional roller coaster. I guess life with Lyme really is like a box of chocolates, you never know what you're gonna get.

I'm learning to be patient, to live in the moment, and to accept each day and what it brings. I'm grateful for the good in all of this and I know one day I'll feel better again.

Lyme Awareness Month Conclusion

With Lyme Awareness month officially over, I want to acknowledge other people whose lives have also been affected by this disease, my friends and family. The sacrifices, adjustments, dealing, processing, helping, supporting, caring for etc. take a toll people I love just as much as being ill does on me.

The sacrifices others have made are endless and I want to say THANK YOU! Every thing you do for me no matter how insignificant it may seem is a wonderful blessing to me. I want you to know that I understand that

■Helping those that can’t always help themselves is tiring
■Always being worried and conscious of my needs is mentally exhausting
■Knowing that vacations and family holidays may not be feasible is disappointing
■Absorbing medical expenses or compensating for lost income is worrying
■Accepting that my lifestyle is limited and different from before is heartbreaking
■Knowing you can’t do more for your child/friend/loved one is devastating

Even though it can be difficult in a lot of ways, so many of my friends and family have stepped up and contributed in numerous ways that have truly made a big difference for me.

Though I may not be able to express my appreciation like we once did, your efforts never go unnoticed and are always appreciated.

Because of your efforts and understanding, I am stronger and I will get better.

You all are truly amazing.


An extra special thank you goes out to my wonderful husband who has done and continues to to a million small yet incredibly significant things for me each day and who also steps up in so many enormous ways. I wish things weren't they way the are, but I'm sure glad that I have you by my side. I couldn't fight this fight without you as my coach. I love you.

PS. I hope that my sharing has provided you with information that you can use to keep yourself and you family safe. I don't want any of you to ever truly know what this experience is like.

The glass is half full

I've come to a place with my illness where I have found balance and joy in what I am able to do. One of my previous posts was about all the good things that have happened since I've been sick and how lucky and grateful I am for them. I came across a blog post on facebook. It was posted by a friend. I have no idea who wrote it, but I like what she says about how limitations can be liberating and it reminded me that I'm just fine with where my life has taken me. It's not what I had planned for. However, it has opened up new doors and given me opportunity to know myself better then before. I've always been better at modifying existing ideas then creating my own so instead of trying to restate what she has already said so wonderfully I thought I'd just share the link to her blog.



http://gotlyme.wordpress.com/2010/05/01/liberating-constraints/#more-547

You won't "get it" until you get it and I hope that you don't

It's hard living with a disease that effects my life in so many ways. It's even harder when it seems as though the legitimacy of my my experience is questioned along with the way I handle it. I often feel as though people think I should be doing something different with my life right now or that if they were me they'd go about it in a different way, that somehow they'd be tougher, stronger, more resilient.

I understand this because they aren't in my shoes, they can't possibly know. When viewed from a place of health it is much easier to imagine how hard you would fight if you were sick or tired or ill. The reality of what I experience can not be known by them. The many little struggles and battles that I fight just to be where I am today can never be know by someone who hasn't walked in my shoes. You won't get it until you get it and I hope you don't. I really hope you don't.

I also hope that those who have a loved one with Lyme Disease or any other chronic illness would take the time to try to understand that person's unique journey and trust that at any given time we're all doing our personal best.

Below is a link to a letter written by Elizabeth Chalker who is VERY sick with Lyme Disease. Her pain and suffering is much worse then my own. I have experienced many of the things she speaks about, to a lesser extent, and want to share this letter with you. She expresses her self better then I imagine I can. Please take the time to read it and know that I have come a long way this last year and am always working toward my personal best. I couldn't imagine doing anything less.

http://www.publichealthalert.org/Articles/miscellaneous/Chalker-Understand.htm

A Look Inside

This video helped me to understand what is happening inside my body and why Lyme Disease can cause such a wide variety of symptoms.

Lyme Disease Awareness Month

May is Lyme Disease Awareness month and to participate I will be posting more information then usual about Lyme Disease. I will share both general information and my personal journey. I have two goals in doing this. The first is to educate and share knowledge. If my sharing can help just one person in any way then it will be worth it. I especially hope that this information will be useful to you so that you can protect yourself and your family from experiencing what I have been through, rephrase, what I am experiencing. The second goal I have is really more of a hope. I hope that sharing my story in will increase your understanding of what is happening for me and how it affects my life including my relationship with you.

I do not intend to complain or drone on about how bad my situation is. I have come to a place where I have accepted, for the most part, what is happening and I'm simply trying to make the best of an unfortunate situation. I also understand that my experience with Lyme is nothing compared to the pain and suffering many others deal with on a daily basis.

I just want to practice my love of education and participate in spreading awareness about Lyme Disease. Please understand that some of the information I share may be considered controversial. I'm not interested in arguing with anyone or debating my experience. I am however, willing to talk with you, answer your questions, and try to explain what I can. I just want to share what I have learned and I hope you will be able to see that it comes from a place of concern and caring. If I said nothing and someday one of you became sick with Lyme I would regret not sharing what I can. If I had really understood more about Lyme I might have gone to see a doctor much sooner and things might be different today.

To kick off Lyme Awareness Month I'd like to share this video from you tube. It gives a general overview of Lyme Disease. Thanks For watching and I encourage you to spread the word this month. I hope you have a happy and healthy May and enjoy the wonderful weather that is sure to come.

Thanks for your time, love, patience, and understanding. I love you all.

Yard Sale Success

Last weekend Janine, Jeff, and I had our round two yard sale fundraiser for Lyme Disease Treatment. It was a big success and a lot of work! Between the 2 sales we must have had 15-20 people donate items. Everyone was so generous with the quality and size of their donations. Janine's backyard looked like a genuine thrift store, with a little bit of everything you could imagine. On top of it we had a bake sale. It was a lot of work, but it felt good to know that we were all helping each other to get the treatment we need. Lyme literate doctors don't take insurance and most things need to be paid for up front and out of pocket.

Thanks to the generous donations and Janine's obsessive purging :-) we raised over $700 this time around making our grand total around $1300! That's amazing for a yard sale. Thank you to Janine and Jeff who worked so very hard even as their bodies were begging them to stop, to Rachel for asking again and again how she could help, to Sean and Linda and their kids for their generosity and loving support, to friends like Ambrosia, Leanna, Josh, Jim, and many others who delivered donations of awesome things. Thank you also to Asia who diligently worked the bake sale and sold a lot of cookies. And a big thank you to my husband who is there for me no matter what. I couldn't do this without his love, support, strong arms, and awesome truck. We could not have done this with out the support from each of you.

With my part of the money from the first go round I was able to pay for a doctors apt. with my LLMD. The money from this second adventure in yard sale land will help to pay for refills of my many supplements and herbs and hopefully will last long enough to pay for some of my next Dr. visit in June. I have also been receiving donations from wonderful friends through the donate button at the top of the page and have used those to pay for lab work and medicine. THANK YOU THANK YOU THANK YOU! The love and support I have received form my community has put a warmth in my heart, a smile on my face, and relieved some of the worry of paying for health care on a limited income. I'm not sure exactly how Janine and Jeff are using their part of the money but I do know that they can now afford to pay for their first visit with a LLMD!!! Horray.

I'm still tired and resting from our weekend adventure and I know Jeff and Janine are as well. It takes a while to rebound from such efforts and I appreciate your understanding and patience with me.

Thanks again from the bottom of my heart.

Doctor's Apt.

Yesterday i had another visit with my Lyme Literate Dr. She was happy to hear that I'm doing well on the Salt/Vit. C protocol as well as the liquid oxygen. She said sometimes people who are more sensitive respond better to the natural approaches then to the antibiotics. However, she also said that just because I am feeling better these days doesn't mean that I am actually getting better, but that there's a trade off and sometimes being able to live and enjoy life is better then suffering through the harsh antibiotic treatments. sShe's willing to gamble with the natural stuff a bit longer because she likes how well I feel.

My CD-57 test results went down again from 60, 69, 59, to 45. She said that sometimes you'll feel better long before your immune system recovers which is what this test is checking for. She said that for now we're going to basically ignore the results and go with how I feel unless we get another really low one when I return in 2 months. So wish me luck with this salt thing. I really hope it is working because while it's nice having more energy these days I'd really like to be done with all of this and be able to work, play, and live like I used to. I'll take the energy for now if that's the best I can get and I'll keep on keeping on. So the short version is things are the same except I'm going to add the Cat's Claw back in as an additional method of antibiotic.

WOLF School

Last week I had the perfect opportunity to return to WOLF School as a naturalist. I had 15 really cool kids from a Montesorri school come and visit. We had the camp to ourselves, it was really nice. On Monday I took them and their many awesome parents on a short hike into the redwoods and to the rhododendron garden at Monte Toyon. They really enjoyed getting inside the hollow redwood tree, seeing banana slugs, and learning about the albino redwoods. It was an early day for me and a long day, and I had fun getting back out there on the trail and playing with kids. I was so tired by the end of the evening I almost had a total melt down. I just don't have the endurance to move around that much these days.
Then, on Tuesday I met them at Natural Bridges State Park Beach. We collected beach treasures, made sand creatures with interesting adaptations, went on a solo hike, made friends with poison oak - a lot of poison oak, and visited the tide pools. That was a lot of walking for me and my knee started to hurt. I was grateful when it was over, but also would have loved to spend a whole week with those kids, they were really neat lil ones.
It was really nice to be out there doing what I love. I wish I could be doing it all the time, but after two days it was clear that I'm not quite ready to head back for reals. I will be however helping out with running a program in May. That should be easier because I won't need to be on the trails which will help me to conserve my energy. I hope the weather is really awesome when I go back. Camp Rocks!

Donate Button

Check out my cool new donate button over to the right -->
My wonderful friend Jeff did the behind the scenes work so that you can directly donate to my Lyme Treatment Fund. Thank you Jeff!

This couldn't come at a better time. I've run out of short term disability money and am not strong enough quite yet to go back to work. I'm working hard to get social security disability until I can go back to work with out killing myself, but the system has a lot of red tape and it's taking a long time. So in the meantime, I'm working on fundraising with my good friends Janine and Jeff who also have Lyme Disease to help us all ease the burden of Lyme related expenses.

We're having two Lyme Awareness yard sale fundraisers and looking into getting a band to play a benefit concert. May is Lyme Disease Awareness month and we're looking into hosting an information/fundraising both at the Saturday Market in San Lorenzo Park sometime in May.

Here are some ways you can help us:

- donate directly by clicking the donate button at the top of the page.
Any amount is helpful, even $5 makes a difference.
(there is also a button on Jeff and Janine's page at http://cruzjones.blogspot.com)

- donate your unwanted items to our yard sale fundraiser

- stop by our yard sale fundraiser this weekend Sat. March 26th to say hi and learn
more about Lyme Disease

- share this blog with your network


- cash in your recycling or that change jar you have laying around and donate it

- call or stop by and say hi

Thanks again to everyone who has supported us in the past and continue to offer support in so many important ways. We are lucky to have such a great community to help us get through this.

THANK YOU

Helping Friends With Lyme

Hi friends and family,

As many of you know, I was diagnosed with Lyme Disease and related co-infections about 8 months ago. It's been an interesting journey since then. Every day is different, some days are good and others not so much. Lately, things have been looking up, which is a nice change. I've found a Lyme Literate Dr. who is estimating that my treatment will last 1-2 years. One of the most frustrating things about Lyme Disease is the political battle surrounding the diagnosis and treatment of Lyme. The short story is that because of some poorly written guidelines most Lyme patients must pay for their Lyme literate Drs. and treatment out of pocket. In 2009, we spent over $4500 out of pocket, on medical expenses. With me not working, that's been a challenge. I'm so thankful for Emiliano's support through all of this and so glad that our insurance is covering prescriptions so far. Many friends have also stepped up and offered financial support which helped cover a lot in the beginnng. However, i'm not the only one who needs support.


Recently, my good friends Jeff and Janine Jones have also been diagnosed with Lyme and an assortment of co-infections. They are currently looking for a Lyme literate Dr. as mine is not accepting any new patients at this time. They are happy to finally understand what has been ailing them for so long and daunted by the sudden onslought of medical tests, Dr. fees, and prescription costs they will soon face. They currently do not have health insurance and will be paying for everything out of pocket even prescriptions, for both of them.

We've decided to raise funds for the three of us by hosting a 2 weekend yard sale/ Awareness Event. March 26-27 we'll be at my house on Darwin St. in the Seabright Area of Santa Cruz. Then we'll take all the left overs to their house and give it a second go round April 23-24th. I'm hoping that we can raise enough $ to send them both to a Lyme Literate Dr.

You can help us out by donating your unwanted items to our yard sale. Whatever you were going to take to good will please send it our way instead. Every little bit of help means a lot for us so, thank you for what you have already done and for what you may do to support all of us in the future. It means a lot.

To find out more about my journey with Lyme Disease check out my blog.

You can also support our cause by shopping with String Bean Studios on etsy or at local craft faires. Check out the String Bean Studios Blog for date and events.

For more information about Lyme Disease visit www.lymedisease.org

Thank you for your friendship, understanding, and support.

Keri

I Have Lyme and I'm Lucky

You might be asking yourself why I think I'm lucky to have Lyme. Well, I'm lucky because of all the wonderful things that have happened since I figured out that I have Lyme Disease and I wanted to share with you some of the things I appreciate and feel grateful for that never would have happened if I hadn't discover that I have Lyme.

I'm lucky because:

- i know what is causing my aches and pains, and various other symptoms. Some people have a really hard time getting diagnosed and go for decades not getting the diagnosis and treatment they deserve.

- i have a wonderful friend Natalie aka. Squirrel who was so generous and paid for me to see our Naturopath who first diagnosed me with Lyme.

- there are Lyme Literate Drs. near by and I had several to choose from and was able to find a good one only 20 minutes away.

- we have insurance that pays for some of my needs.

- i have a wonderful husband who works really hard at several jobs to pay for just about everything we/I need. I can't imagine what my life would be like if I didn't have him. He's what is getting me through this.

- we can afford most of the natural treatments that help to ease the symptoms and aid the healing process.

- i have figured out that I'm not a wimpy person who can't do as much as other people, I'm not getting older yet, I'm not loosing my mind, and the pain is real because I'm sick.

- i have discovered that there are wonderful people in the world who will step up to help others even if they don't know them very well.

- i have discovered who my real friends are and who I can really count on in times of need. And, when I needed money they stepped up to the challenge and dug deep into their pockets and gave.

- i have made lots of new wonderful supportive and amazing friends, like Janine. Too bad so many of them live far away.

- i have discovered my inner artist and my talent for creating jewelry. I finally feel like a creative person.

- i have learned to like new foods. My limited diet has created situations where i have had to be more willing to eat strange or seemingly yucky things and consequently discovered they're not so bad after all.

- i have learned a lot about how the body works and what herbs are good for healing a variety of ailments.

- because i have a situation where I can survive with not working for a while and focus my energy on healing.

- it could be worse. While this is by far the worst thing I have ever experienced, it could be much worse. I can still walk and talk, and do many things. And I'm not dying. I will survive this, and I will get my life back. This too shall pass.

For all of those things and many many more, I AM LUCKY.

Salt Update

I've been taking salt/vit. C and the liquid oxygen for 4 weeks now. It's been really good. I have felt more energetic and happy and generally great for the last few weeks. It's been really nice and I've been getting out and about by myself and doing a lot more. I've been driving a bit, but only when I feel really good and the traffic is light. I've gotten reinspired again with the jewelry business and have been making new items, selling more on etsy, and getting ready for upcoming summer and fall shows.

As predicted by the salt/C protocol a herx reaction is supposed to occur at about the 4 week mark, well here it is. The last few days, I've been feeling run down, my body hurts more, I'm not as motivated to get out of the house, and the late nights are back in full force. I know that all of this means it's working and I'm killing off the bacteria during their reproductive cycle. I hope this hurx doesn't get much worse then this, cause I feel grumpy and hurty and I want it to stop.

One of the hardest parts of all of this is the low periods after I feel really good. It feels really good to be getting my life back and then to all the sudden have it taken down a notch AGAIN is hard. I sometimes wish it would just be a gradual upward trend with out these setbacks. Hopefully, this new treatment will provide improved test results and prove that it is worth the pain.

Complete List of Symptoms

I have also had LOTS of people ask me what ALL of my symptoms are so I've copied a master symptom list and then erased the ones I do not experience. What you see here is a list of symptoms that I have experienced at some time in the last several years. I often experience several at once or per day, but never all at the same time. I'm really happy I don't have the really bad and scary ones, like loosing sight or the ability to speak.

AUTONOMIC NERVOUS SYSTEM/ENDOCRINE/IMMUNE/HORMONE
Abnormal sensitivity to cold
Allergies (nasal, other; new, increased or worsening)
Canker sores
Chills when hungry (may occur instead of feeling hungry)
Cold hands and feet
Extreme fatigue after minimal exertion
Feeling hot or cold often
Flu-like symptoms, on-going or recurrent after initial gradual or acute onset; includes mild fever
(99.5-101.5 F / 37.5-38.6 C), chills
Increased susceptibility to infections
Low-grade fevers
Low blood pressure (below 110/70)
Low body temperature (below 97.5)
Lymph nodes painful, swollen (in neck; under arms)
Night sweats (not related to menopause or fever)
Thirst, increased
Temperature irregularities; often feeling hot or cold irrespective of actual ambient temperature
and body temperature; low body temperature (below 97.6 F / 36.4 C)

CARDIOPULMONARY/RESPIRATORY/CIRCULATORY
Cough
Dyspnea (out of breath) or shortness of breath (air hunger) after minimal or no exertion
Heart pounds so hard it shakes body, bed
Sighing, frequent, not related to mental/emotional state

CENTRAL NERVOUS SYSTEM/NEUROLOGIAL/NEUROPATHIC/OTOLOGIC
Alcohol intolerance
"Brainfog"; inability to think clearly
Diminished reflexes
Fainting or blackouts; feeling like you might faint
Headaches (frequent, severe, recurring)
Hearing fluctuations (sounds fade then return)
Joint or arthritic pain not relieved by NSAIDs (ie, ibuprofen)
Libido (decreased)
Light-headedness, feeling spaced-out
Migraine headaches
Muscle twitching
Noise intolerance
Paralysis or severe weakness of limb
Parasthesias (numbness, tingling, crawling, itching sensations) in face, head, torso, extremities
Photosensitivity

Sensory alterations (hyper- or hyposensitivity) - smell, taste, hearing (noise intolerance)
Severe muscle weakness
Syncope (fainting)
Touch or weight of clothing on or against body causes discomfort or pain

COGNITIVE FUNCTION
Becoming lost in familiar locations when driving
Difficulty with simple calculations (e.g., balancing checkbook)
Difficulty expressing ideas in words
Difficulty moving your mouth to speak
Difficulty making decisions
Difficulty following directions while driving
Difficulty remembering names of objects
Difficulty remembering names of people
Difficulty recognizing faces
Difficulty following simple written instructions
Difficulty following complicated written instructions
Difficulty following simple oral (spoken) instructions
Difficulty following complicated oral (spoken) instructions
Difficulty integrating information (putting ideas together to form a complete picture or concept)
Difficulty putting tasks or things in proper sequence
Difficulty paying attention
Difficulty following a conversation when background noise is present
Difficulty making and/or retrieving memories (long/short-term memory deficits)
Difficulty understanding what you read
Easily distracted during a task
Feeling too disoriented to drive
Forgetting how to do routine things
Forgetting the use of common objects (such as, what to do with the shampoo when you arestanding in the shower)
Forgetting how to get to familiar places
Impaired ability to concentrate
Losing your train of thought in the middle of a sentence
Losing track in the middle of a task (remembering what to do next)
Poor judgment
Switching left and right
Slowed speech
Transposition (reversal) of numbers, words and/or letters when you speak and/or speak
Word-finding difficulty
Using the wrong word

DIGESTIVE/HEPATIC
Bloating; intestinal gas
Decreased appetite
Digestive chemicals (acid, enzymes) reduced or absent
Esophageal reflux
Frequent diarrhea
Food cravings (especially carbohydrates, sweets)
Food intolerance
IBS
Increased appetite
Nausea
Stomach ache, cramps
Vomiting
Weight gain or loss

EQUILIBRIUM/PERCEPTION
Bump into things frequently
Difficulty discriminating printed matter despite proper vision correction
Distances (difficulty judging when driving; when putting things down on surfaces)
Dizziness or vertigo
Dropping things frequently
Dysequilibrium (balance problems)
Impaired coordination
Loss of balance when standing with eyes closed
Perception (not quite seeing what you are looking at)
Some patterns (stripes, checks) cause dizziness
Spatial disorientation
Staggering gait (clumsy walking)
Words on printed page appear to jump off page or disappear when staring at them

EYES/VISION
Blurred vision
Drooping eyelid
Eye pain
Flashes of light perceived peripherally
Oscillopsia (image jiggles)
Pressure sensation behind eyes
Red and/or tearing eyes
Slowed accommodation (switching focus from far to near, near to far)
Spots or floaters not related to migraines
Swelling around eyes

HEAD/NECK/MOUTH
Bruxism (grinding/clenching teeth)
Canker sores
Dizziness when you turn your head or move
Dry chronic cough
Dry eyes
Pain in ears, palate, gums
Problems swallowing, chewing
Runny nose in absence of cold, allergies
Sinus infections
Sore spot on the top of your head
Temperomandibular Joint Syndrome (TMJ)
Unexplained toothaches

MUSCULOSKELETAL
Arthritic pain that migrates from joint to joint
Carpal tunnel syndrome
Joint aches (arthralgia)
Joint pain, without redness or swelling
Loss of tone
"Lumpy, bumpy" long muscles
Morning stiffness
Muscle aches (myalgia)
Muscle pain, stiffness, weakness
Reduced range of motion
Stiff neck
Writing causes pain in hand, arm shoulder

PAIN SYMPTOMS
Abdominal pain
Chest pain
Generalized pain
Shooting or stabbing pains
Painful tender points

PSYCHOLOGICAL SYMPTOMS/MOOD/EMOTIONS
Abrupt/Unpredictable mood swings
Anxiety or fear for no obvious reason
Appetite increase/decrease
Depressed mood
Feeling helpless
Crying for no reason
Inability to enjoy previously enjoyed activities
Irritability; over-reaction
New phobias/irrational fears
Panic attacks
Personality changes (labile, irritable, anxious, confused, forgetful)
Phobias (irrational fears)


SENSITIVITIES
Acute or abnormal reactions to medications
Alteration in taste, smell, and/or hearing
Chemicals (alcohol, medications; lower tolerance for)
Food sensitivities
Increased perception of and sensitivity to noise
Light sensitivity
Sensitivity to odors (able to detect and/or react in concentrations far lower than before and that healthy people cannot smell)

SKIN/NAILS
Bruise easily
Bruises may take longer to appear, and/or longer to fade
Bull's-eye (Erythema migrans) on light skin (resembles a bruise on dark skin)
Dry, itchy skin
Easily scar
Vertical ridges or beads in nails

SLEEP SYMPTOMS
Abnormal brain activity in stage 4 sleep ? ? ?
Altered sleep/wake patterns (alert/energetic late at night, sleepy during day
Difficulty falling asleep
Difficulty staying asleep (frequent and/or prolonged awakenings)
Hypersomnia (excessive sleeping)
Myclonus (restless leg syndrome; occasional jerking of entire body)
Nightmares (frequent, extremely vivid and/or disturbing)
Unrefreshing/Non-restorative sleep

UROGENITAL/REPRODUCTIVE
Decreased libido
Frequent urination
Painful intercourse
Painful urination or bladder
Pelvic and/or rectal pain
Other symptoms worsen before start of menstruation
Worsening of PMS

OTHER
Activity level reduced to less than 50% of pre-onset level
Delayed reaction to overactivity/exertion (onset 24-48 hours after exertion)
Fatigue, prolonged, disabling, made worse by exertion or stress
Hands hurt excessively when put in cold water
Handwriting changes, altering signature and/or other writing
Painful, weak grasp that gives way/lets go
Periods of concentrated thinking causes physical and mental exhaustion, increases pain
Sore throat
Symptoms worsened by extremes of temperature (hot, cold), stress, and/or air travel
Symptoms change focus from time to time, like infection is moving through the body
Weight changes (usually gain)


COMMON CO-INFECTIONS AND DISORDERS
Babesiosis
Cytomegalovirus (CMV)
Epstein-Barr virus (EBV)
Ehrlichiosis
HHV6
Mercury or other metal toxicity
Mycoplasma
Systemic mold and/or mold sensitivities

Medications and Supplements

Many people have been asking me what I'm taking to treat my Lyme and the variety of symptoms it brings. I often can't remember and so I've decided I'd write them all down here to share with people.

For supplements I regularly take the following:

Magnesium Malate
Curcumin
Interfase Plus Enzymes
Oregano
Probiotics
Azo Yeast
Detox Kit
Wellness Formula
Ginger root
Zyflamend
Uva Ursi
NAC
Serotone Active
Quercetin + Nettle + Bromelain
Grapefruit seed extract w/ echinacea and artemisia
B-Complex 50

I just started on:
Hymalian salt + Vit. C
Liquid Oxygen

For Prescriptions I take:
Meletonin
Naltrexone
Mycelex Troches
Diflucan

For antibiotics I have taken:
Doxycycline
Ceftin (Cefuroxime)
Bactrim
Levaquin
Rifampin

I LOVE OXYGEN!

I know I only just started the Oxygen treatment yesterday, but I'm already in love with it. All day long yesterday I was full of energy. I cleaned up around the house, had eaten/taken meds/showered/and dressed all before 11:00. I even took myself for a lil drive around town and had fun at the craft store getting supplies for some jewelry special orders I need to make.

The best part however, yes even better then increased energy, was that I only took 2 ounces yesterday and my oral thrush is SOOOO MUCH BETTER. The direct contact with the oxygen must be killing it. I'm gonna try to see if I can get all 3 doses in today and maybe it'll be gone in the next few days. This is great!

So far, so good

Well I've been off of the antibiotics for 10 days now and that yucky chemical feeling is gone. I started today with one ounce of suspended liquid oxygen and one gram each of salt and vitamin C. So far, so good.
The liquid oxygen is strange. It kinda smells and it tastes weird, sorta like water and vodka and swimming pool water with a non-bubbly bursts of effervescence. It's really hard to describe it. The bottle plays up the energy boosting equalities and I can see why. I feel like I've had coffee or something, I'm on fire and so productive! It's almost too much, I feel kinda shaky and jittery.
My appetite is back and I'm eating as much as I can get my hands on. I'm sleeping well and getting up earlier these days. I really love these beautiful days and have been getting out for walks.
So as I said...so far, so good.

Ticks-Brad Paisley

When I first Met my husband I was working as a naturalist and I happened to be very interested in creepy crawly things. I heard this song and loved it instantly. It appeals to my love of the woods and funny music. He downloaded it to his phone and for about 2 years whenever I call him this song plays. Now, I have Lyme Disease which I got from a tick bite or two. The song still plays when I call. There's something sorta funny about that. It's our lil song.

PS. Always get a friend to check you for ticks!

Systemic Yeast

Since realizing that I have an oral thrush infection I've been researching about it and how to get rid of it. It's really gross having a furry tongue and I want it to go away. I also have to figure out how to manage this yeast so that I can take the antibiotics I need to get rid of the Lyme. I was surprised when I read the list of symptoms at how much it can affect your quality of life. Maybe many of my symptoms are more about this the the Lyme exactly. I think this problem is more common then many of us know about and might be the underlying cause of many other unexplainable health conditions. I've included the list of symptoms because I suspect I'm not the only person I know who is suffering from this. I'll update when I figure out what to do about it.


incapacitating fatigue
concentration/focus problems
short term memory
painful joints
muscle aches
extreme tightness in the neck and shoulders
acid reflux
brown colored mucus in the back of the throat
white or blood blisters in the mouth/tongue/throat
unrefreshing sleep
sore throat
white coated tongue
aversion to be touched - "crawling" skin
chronic sinusitis
frequent urination
diarrhea
chronic constipation
headaches including migraines
visual blurring
sensitivity to light
eye pain
depression
irritability
anxiety
panic attacks
personality changes
mood swings
chills
night sweats
canker sores
shortness of breath
hypertension/high blood pressure
dizziness and balance problems
sensitivity to heat/cold
alcohol intolerance
gluten intolerance
irregular heartbeat
irritable bowel
constipation and/or diarrhea
painful gas/abdominal bloating
low grade fever or low body temperature
numbness/tingling in the face or extremities
dryness of mouth and eyes
difficulty swallowing
projectile vomiting
menstrual problems (PMS/endometriosis)
recurrent yeast infections
recurrent ear infections
skin rashes
dry/flaking skin
eczema
dermatitis
acne
skin discoloration/blotchiness
dandruff
jock and rectal itching
chronic athlete's foot
chronic toenail and fingernail fungus
ringing in the ears (tinnitus)
allergies
sensitivity to noise/sounds
sensitivity to foods
sensitivity to chemicals
sensitivity to odors
anemia
weight changes without changes in diet
lightheadedness
feeling in a fog
fainting
muscle twitching
muscle weakness
jerky-leg syndrome
low sex drive

Funk

Okay, so I've been off of the antibiotics since Monday Afternoon and now it's Friday afternoon and I'm not feeling so great. I've been having ear pain and it feels like there is a lot of pressure inside my ear and the cold air really hurts. My knees and lower legs are hurting again, and I'm feeling spacey. I keep forgetting what I'm doing in the middle of doing it and I have a headache. I can always tell how I'd doing based on my typing and today it has been bad. I'm typing letters that don't come close to making the words I want to say. Horray for spell check! I think I better get going on the salt/vit. C thing pretty soon.
One of the most frustrating things is that I feel bad so I take meds to help. Then, the meds. make me feel bad so I stop taking them or I take a new med to counter the effects of the first ones. I feel better at first then, I feel bad again so I go back on the meds. AUGH!
I'm frustrated because I feel like I'm not getting anywhere and I can't eat anything because it'll make either the Lyme, yeast, or my allergies get worse. I wish this treatment was more clear cut.

Change of Plans

After I made my last post I realized that going straight into a new treatment that will likely cause me to herx was not a good idea. Instead, I'm going to take a week off and consume only the most important meds and supplements and focus on detox, then I'm going to work into the new salt/C regimen. Yesterday I felt yucky until about 3:00 and then my energy peaked and I ended up going for a short walk and went to the clothing exchange with Janine. Today I'm feeling decent. Will up date as things progress.

Alternative Approarch

I had another visit with my Lyme Literate Dr. yesterday. I received another score from the CD-57 test. This test measures the strength and functioning of my immune system. My score has gone from 60 to 69 and now is back down at 57. The goal is to get me into the 200 range. She has said that any given person's score can range up to 30 points in a given day, but what we see here so far is that I'm not getting any better. This matches up with how I feel, which is pretty much the same as I have for the last year. Some days good, others not so good. I've developed a nasty oral thrush infection, which likely means that I have systemic yeast. This is mostly from the antibiotics I've been taking for the last 6 months with help from my diet. I didn't realize that I eat so many foods that are hi glycemic. Carbs + sugar = YEAST.

The new plan for now is for me to take 2 weeks off from the antibiotics. This should help me have time to detox and get rid of the oral thrush. While taking 2 weeks off I will only take my probiotics, sleep aids, an immune booster, antifungal pills and antifungal lozenges. I am also going to be trying a natural protocol for killing Lyme and related co-infections. The protocol calls for consuming continuous quantities of pure salt and vitamin C. It sounds weird, but bacteria can't live in a saline environment and the vit. C helps with detox and supports the immune system. If this works i should have a herx reaction from this treatment as well.

Right now I feel tired and light headed and am having a hard time maintaining my train of thought. I'll check in regularly. In the meantime if you want more information about yeast infections or the salt/C protocol check out these links.
PS. Thanks for your support, it really helps.

http://www.sheilashea.com/candida.html

http://www.fettnet.com/lymestrategies/groupnew.htm

The debt plan is working!

So about 2 months ago we paid off my car WOOOHOOO! Now I've got the pink slip and can really say it's mine. That feels great. We took the money we were already paying and applied it to the last bit of my old Mervyn's card I had from way back. Two payments later that is all paid off as well. Now we'll take the money for the car and the Mervyn's payment and add it to what we already pay on a Citi Health card and get that payed off soon. We're also going to be using almost our entire tax refund to pay down debt. We decided that my car really did require some new tires and an oil change and so we'll use a bit for that and the rest goes off to debt.

We're broke as heck with me out of work, my medical bills, and putting every spare dollar into debt reduction, but it feels really good to be making progress and know that finally our money is doing something for us. It's hard not being able to do fun things with our friends and family whenever we want, or being able to buy things just because we like them. We're learning how to be creative with our money and resources, learning what we really NEED and what is important, and we know that soon we will have all of our debt payed off and will have money in our pockets.

Under Our Skin - an important film

Hi Bay Area and Nor Cal friends,

I'm writing to share with you about a very important and special series of movie screenings in you area. There is a very important documentary about the Lyme Disease epidemic and the issues surrounding it called UNDER OUR SKIN.

This documentary is currently on the top 15 list for Oscar nomination and I hope it makes it through the next rounds of voting. Not only is this a good film, but it is an important one. Lyme disease is spreading faster and the number of cases being reported is doubling yearly. Please go and see one of these screenings. The film will educate you on the problem at hand, which is a much bigger problem then most think, and help you to protect yourself/family/pets. In addition it will shock, surprise, inform, and infuriate you. As if those reasons aren't enough themselves, please go and see a screening just for the simple fact that I'm living with this illness. This is one of the ways you can support me on my journey to wellness.


To find out more about the film and currently scheduled screenings please visit the website www.uderourskin.com. Most of these are one date and time so please visit the website for further details.


1/20 St. Helena @ Cameo Cinema

1/23 Cloverdale @ Public Library

2/05 Petaluma @ Hill Park Medical Center


Seriously, please go and watch this important movie.


Thanks in advance,

Keri Aragon

Not feeling very good this week

So, I started new meds recently and at the beginning of the year I added a new medication. It's causing me to have a herx reaction which is good because it demonstrates that the medication is working. The herx happens when you get a rapid die off of bacteria and then you have a toxic load causing your symptoms to increase for a while. I don't know who long this is going to last.

Lately, I've been thinking about everything and I'm getting very suspicious that I may have gotten Lyme or some co-infections from my first tick bite in the spring of 2003. I've been realizing that some of these symptoms such as getting sick all the time and having my left arm hurt go all the way back to when I lived in Santa Rosa. I'm also realizing that I may not have pieced it all together earlier because my memory may have been decreasing even way back then. I'm still trying to piece it all together so if you remember something about my health from 5 or 6 years ago please remind me so I can put the pieces together.

Here is a little bit of what I'm experiencing right now.
-chronic fatigue
-memory loss
-difficulty recalling
-pain around major joints
-severe itching
-difficulty sleeping
-lower back pain
-congestion
-foggy head
-shortness of breath
-hot and cold flashes
-extreme desire to sit or lay down
-feelings of isolation
-emotional roller coaster
-muscle weakness
-lightheadedness
-etc.

It means a lot to me when people offer to help out. It's helpful when people bring over food, or stop by to cook something I already have, drive me places so i can get out of the house, drop off dvds or books, or just stop by to say hi and mentally distract me for a while. I'd appreciate some help or visits this week.

I don't feel good.

So I'm having flash backs to last winter and how I felt then. I have been feeling pretty yucky for the last week and I have a feeling this is going to hang around for a bit longer. I can't do very much when I feel like this and I don't get out of the house much because I don't feel good and can't drive like this. I would love it if friends could stop by this coming week. My husband is back to work and soccer and won't be home very much, it would be nice to have some company. Call or send me an email if you want to stop by, or just come over.
Here's a link explaining what is happening inside my body right now, in case you want to know.


http://www.lymebook.com/jarisch-jarish-herxheimer-reaction-herx-lyme-disease

also I have the DVD of the film UNDER OUR SKIN and would love to share it or watch it with anyone who wants to learn more about Lyme Disease. Just let me know. You can watch the trailer on you tube on their movie website. I'm too tired to look up the link.