Yolanda's Blog ... and true confessions

Yolanda Isn't Looking for a Realtor | Yolanda H. Foster | The Real Housewives of Beverly Hills Blog

You know, at first I thought this Yolanda thing was going to be the end of us. But she did it! She let it go, and her blog is honest and filled with EVERYDAY Lymie incidences and feelings. So, I am sorry Yolanda, I was wrong and you deserve to be one of our spokespersons. Thank you.
This link goes to her well done blog.

Journey Thru Lyme - Anger & Chronic Illness

http://www.youtube.com/v/WRo6bEKUN_c?version=3&autohide=1&feature=share&autohide=1&attribution_tag=RqV7enXJ1PMZ6fnJ62vlkA&showinfo=1&autoplay=1

You need to click on title to watch the video of Logan!!
He is in the Shenandoah Mountains right now.

LYME COMMUNITY: This video of Logan is genuinely important in our joint quest for the recognition of Chronic Infection due to Bb.

Just another person who is part of the PIIB!!

Patient Initiated Information Boom

 
     There is sooo much LYME information out there now, that I really have to consider all facts, all sides. I feel extremely lucky to be able to so. It has not always been that way. The post before this, is ONE example of all the
detailed,
deeply varied,
research
and journaling
in our OWN
data collection.
There is an EXPLOSION of PATIENT INITIATED INFORMATION!
Wow. We rock, and we, together with good research, good doctors, and honest patients, we are gaining ground in every way. Slow, yes. Questions? You bet.
But be on the lookout, and keep detoxing! :)

Lyme Disease Treatment Guidelines - Treat Lyme and Associated Diseases

Lyme Disease Treatment Guidelines - Treat Lyme and Associated Diseases

I AM SO IMPRESSED! The information, research and just plain intelligent thought that has come out of the Lyme patient community is top notch. It's all over. Underground.

Living with Lyme disease - The Frederick News-Post : Diseases

Living with Lyme disease - The Frederick News-Post : Diseases

2013 LymeDisease org grant to Dr Eva Sapi

http://www.youtube.com/v/RuxTvDpOuIw?autohide=1&version=3&autohide=1&feature=share&attribution_tag=wr9eyFX6TvvQS-oNdmAhGA&showinfo=1&autoplay=1

really exciting!!!!!

Borrelia Burgdorferi Biofilm - Live Microscopy Video

http://www.youtube.com/v/fJqTDnbL7Yo?version=3&autohide=1&autohide=1&feature=share&showinfo=1&attribution_tag=Z5uh4z7bPCNV6R9STM1gbg&autoplay=1

it's getting exciting!

Xylitol and Biofilm: Can't have one with the other.

http://www.youtube.com/v/ohyiVI6IVBQ?version=3&autohide=1&autoplay=1&autohide=1&feature=share&showinfo=1&attribution_tag=VEA-0U7aFe5xEf0GLDzeDg

I have not watched this yet! Will do soon. The part I saw made me realize I'd better give it time and attention. I DO NOT recommend the Lacc/Zyl protocol to anyone who is not being carefully supervised by a very knowledgeable LLMD. This protocol will reach deep into the brain and organs to break down biofilms and cause you challenges that you will need to be supported through. It takes time to heal your body after tearing up biofilms, killing off bacteria, and detoxing them out of your body. It is no easy, fun task, BUT extremely cleansing when all is said and done. Looking forward to seeing all the creepy things in this video.

Dr. Jemsek's office

He oversees my progress and his staff are available for consult during treatment.

Cyst formation in Lyme bacteria (Borrelia burgdorferi)

http://www.youtube.com/v/zOrbEnFeT1k?version=3&autohide=1&feature=share&autohide=1&attribution_tag=sjPDmoGo1Tlslbr4Zqk-Xw&showinfo=1&autoplay=1

Creepy, gross, AMAZING! Just picture that inside you all over. ug. sorry.

The Amazing Tandem of Vitamin D and Vitamin K2

The Amazing Tandem of Vitamin D and Vitamin K2
Interesting! Everyone needs vit. D, essential in fighting disease, however, who is this K2? Last I knew those were skis...

Expert: Treating disease not always simple

Expert: Treating disease not always simple

good article, though short
I'd like to know his protocol

Quick Update

I have been quiet for a while, since my last go-round with lacctoferrin/zylitol. I have been extremely tired and worn out. I am sitting, sleeping, zoning out. I have been imagining that the role of the lacc/zy protocol is to break up biofilms and release the bugs so we can kill them. In my simplistic way, I see all those gross little colonies being broken down and torn up so the biofilms are 'dissolved and the spirochetes are free to roam. Remember, this is microscopic. The spirochetes roam around until killed, or go in to feed somewhere else. CREEPY.
So, since there was so much tearing going on, (because obviously this does work to break biofilms) there has to be a lot of repair going on too. I think between all three stages, my body is just plain working very, very hard and I am tired. My body has been working very hard for many many years to just keep itself going. That's how it feels anyway. I do know that the repair will keep happening and everyday I am stronger once again, but the house is a little messy and there not as much food on the stove..... ahhh well, this too shall pass. Repair away! I can wait, better days are ahead!!!

May12.org

May 12th 2013 was another landmark event for the push for Lyme Awareness. The march on the Mall in 2013 is in the works already! Go to May12.org and LIKE it! Keep updated on the progress and the gaining momentum!

ILADS Lyme Disease Conferences 2013 San Diego Conference Live Streaming Highlights Show Saturday, October 19, 8pm – 11pm EST

ILADS Lyme Disease Conferences 2013 San Diego Conference Live Streaming Highlights Show Saturday, October 19, 8pm – 11pm EST

Turn it on and watch!!!! Dr. B. all afternoon, get your pad and paper out!

mainelyme.org

   I have posted this before, I think, but have included the link to the site on my nav. bar. It is a very good site, with lots of accurate information that still does need to get out there. I am still amazed that there are people who just don't know about tick born diseases at all! Helllllo?!! Oh well, my world is little too.
    Make good use of this site, bookmark it, email it, study it, etc., etc., and pass the information on to your friends and wee little ones as you take your fall color walks this week.

#90: Chronic Lyme Patients Validated | DiscoverMagazine.com

#90: Chronic Lyme Patients Validated | DiscoverMagazine.com

Into the Lyme Journey: Brain Fog- Will it ever go away??

Into the Lyme Journey: Brain Fog- Will it ever go away??: Over the last few years I have experienced slowing of my cognitive abilities. For me, this has been a big deal because I am kind of a dorky...

interesting blog!

The Big Gross Out

     Today I am going to try to forget I have Lyme Disease. (actually I do that a lot) I can only do that because I can stand again, I can walk again, I can drive short distances again, and I am not nauseous EVERY minute, but a lot of the time. Do I still have pain? Yes. Do I still tilt and walk into walls? Yes, a little, and I don' drink...(but I can prove with all the bruises on my legs) Yes, I still struggle emotionally and mentally with the disease.  
      I'll tell you a secret: I am totally grossed out by the fact I have these bugs in my body. The first few years I really could NOT deal with it. It is sooo very gross. It was an emotional drain, and a mental issue, dealing with the reality of what was, and still is in my body. Of course after a decade + I have learned to push that truth into the back of my mind, and focus on things that make me happy. Even if it is watching the birds at the feeder because I am too tired or nauseous or whatever to do anything else. I have learned even more than ever, it's the simple things in life which have the most meaning. I've always appreciated the little things, but not like now!
     It is a blue skied day in Maine and it should be in the 60's. I am determined to go out. Bringing old but nice clothes to a local store for consignment. A couple dollars is a couple dollars. When medical bills wipe you out, all of a sudden a few dollars has more meaning! I'll enjoy my day. I'll pay for it in pain, nausea, fatigue, etc., but I can go out! That's big for me.

Almost Forgot

The past few days have been filled with nausea, fatigue and even low grade fevers. I was under a comforter, blanket, flannel sheets and even had a heavy sweater on over my 6 layers of clothes. That's one way I know it is a fever. Can't get warm. I laid down most of the day. I had been doing my typical daily detoxing but it was time for a deep detox. So, I spent an hour in a HOT Epsom Salt bath, with herb and fruit filled water to drink. Nice. I didn't feel great right away, but this morning I am moving more easily and no fever or extreme fatigue. BTY; when I do ES (about 2 cups/high bath water),
I rotate between sitting in very hot water to lifting my body into cold air. Hot/cold is good for getting the lymph system to drain.. I even hold my nose and dip my head a few times. I make sure the water is high enough to reach the lymph nodes in my neck, and my liver gets hot/cold too. With the hot/cold, and steam bath, ES, drink, and a day in bed, I am doing better. It just seems I almost forget how bad it can be when poof, it comes out again. I have another week or so before I begin the lacctiferrin/zylitol protocol once more, and that will bring on another challenge. Bring it on!

Lyme suicide Hotline

Lyme suicide Hotline

PLEASE USE IF YOU NEED TO!  OOXX

lacctoferrin/xylitol effects

    OK, there now, so I am doing better than in my last post and I will just leave it at that. I knew something was up, but I was all confused about dates of treatment so I didn't put it all together. I had two weeks of treatment with the new lacctoferrin/xylitol, and it ended on a Thursday instead of a Saturday. That's all it took and I was thinking I had been on holiday for a week when it had only been four days. (Fri-Mon.) I wrote that last post right after that. Here's the thing; I did not feel well, but I wasn't recognizing it as a herx. Instead of the usual, pain and nausea, etc., I was feeling flue-y, thought I had a low grade fever for days, was irritable, emotional, and had stiff man. My stomach just wouldn't feel right. It wasn't until I was writing in my daily medical journal (I have 12 years worth of history in them) when I realized that it had only been a few days after treatment that I was feeling gross. It struck me this was a herx, a little different, but a herx, undeniably.
     I also realized that the laccroferrin/xylitol treatment had worked. When I was taking it, I was thinking, "this doesn't seem to be doing anything". Yeah, right. I am guessing that the biofilms were indeed getting broken by the treatment, and the 'afterwash' of spirochetes running for their lives, toxins being released, and symptoms showing, that
ah haaaaaa, it was indeed a hex. It lasted a long time, and I still feel a bit 'heavy with toxins', but much better in all the other ways.
     You would think by now I would recognize a good old herx when it happens. I have come to know, though I seem to forget, that symptoms of a herx ARE NOT ALWAYS THE SAME. I truly believe it depends on where in the brain or body the bugs are being killed off. Where ever the bugs are found when killed, or broken up, messes with the signals in that area. This is why we can show different symptoms in herxes.
      I am taking this as a good sign now, though not fun. It means we are moving around, killing off those little buggers in different places. Oh will it ever end? Yes, I am willingly  taking the treatment because it works and I have gotten so much better than I have been in over a decade, but it is still hard to do. I can look back over my medical journals and see the sequence of herxes and the symptoms I had with them. One day I will put it all together in a comprehensive sequential book. Now won't that be a fun read?
       I'm fine,  just venting and surviving. Feeling much better last couple of days. I have learned to wait it all out.
      Blue skies here today in Maine and I am going to make some pesto with fresh basil that needs to be picked. Plus ,my neighbor brought me some last night, so it will be a nice big batch. yum! Yesterday I had another neighbor bring over raspberries from her garden, so I mad a gluten free (cane and artificial) sugar free crumble to die for. I used some raspberries and basil in my antioxidant water and yum! You should try raspberries seeping all night, it is so good on the gut, and surprisingly I am hooked on basil or sage in there. They add great antioxidants and flavor. I never knew.. but now I do. We may even go to lunch today, on the water because it is so pretty out. Maine, I love you!
     um, spell check not working.......

Rion Paige - Judges are "Blown Away" - THE X FACTOR USA 2013

YES!!!! LIVE MORE!!!!! Thank you Rion!!!!! God Bless your entire life!

"I see no reason to wait"

    Those are the words that rang through me like a loud sound does. It was my LLMD telling me I need to step it up again. He said that after I explained, over the course of our appointment, the symptoms I'd been experiencing since my last visit in April. (this post should haves come out late August....) The symptoms were not new ones, but some old ones cropping up again. They included facial twitching, leg and toe contractions (minor seizure activity), nightmares ( the three days before my Dad's funeral - stress), and finally, to top it off, I told him I had stiffening of my thigh muscles again, making it hard to extend my legs when walking. He called it "Stiff Man". I don't remember if I ever even told him about that symptom before. Although, I am sure he saw it on my first visit when I really was a 'stiff woman' all over. I couldn't turn one way or the other without doing so with my whole body. I had no range of movement.
     He asked me if it happened for a few minutes or an hour or so. I emphatically answered "NO! It happens for days at a time" He looked a little concerned.
     I had never heard the nickname 'stiff man' before, but, I've have my own names for 'stiff man'. One, is I called it the Sit And Stare disease. Impossible to get moving without an external stimulus. As soon as I heard a loud noise or voice, I was able to snap out of it. Yup, it's weird. Doesn't happen very often anymore. The second name I gave it was.....get ready......Early Rigor Mortis. Ha Ha. I did keep my sense of humor, right? Wrong. I was disgusted, actually. All in all, we were talking about the same thing. An inability to move due to a stiffening of the muscles. In MS terms they call it spasticity.
(I know this from the years it was thought I had MS)
     Hence the words "I see no reason to wait" were heard. He saw no reason to wait to step up my treatment, as it was evident that I still harbor biofilms, which are expressing themselves when spirochetes escape, with those old Lyme symptoms. Great.
     Of course I completely expect to harbor bio-films the rest of my life. My brain is so full of them one could say I have holes in my head and be correct. Dr. J seems to think we can get rid of them over time. How much time? Biofilms are one of the ways the bacteria hide and bring you into what some would call remission. I don't. I just stay in wait, because it never takes long for them to creep out again.
      Long story evidently long, I am on a two week on/three week off treatment phase. He has included a new therapy for me which is lactoferrin/xylitol combination on top of antibiotics and my regular supplements/vitamins. This is a biofilm breaker. I feel like I take pills and meds all day long. And, honestly, I am sick of it. I see no way out of this infection, because even if we eradicate the spirochetes, the damage is done. I'll never be the same.
       I am going to stop now. You can see I am not in the best frame of mind today. Lyme disease and it's co-infections can beat the crap out of you, and it has to me. Faith and friends may be the best treatment and survival technique out there. Thank you to everyone who has helped me in the variety of ways you have. It does make a difference.
       I will end on a positive note. I was declared Babesia free!!! Am I? Who knows really. Since starting the new treatment, the fevers, sweats, stiff man, mental confusion, fatigue, etc., have all continued to plague me. BUT, I am moving in the right direction. Management and maintenance is where I am at now, mentally and emotionally. Holding strong, and doing my best.
     Next post I hope to discuss the double MTHRFR gene mutation I have and what role it plays in all of this. It takes a lot of research to figure these things out, if I ever do. I apologize if this post does not flow well, I am in week 1 of holiday and I will blame it on that.
     Now, go to lymelesslivemore.com and sign up for the video conference next week. A lot of alternative treatments will be discussed. I want to explore all ways I could help myself be functional, how about you guys? I love that name; lyme less LIVE MORE!!! OK!   lymelesslivemore.com
  

Dana Walsh in Under Our Skin

Behind the scenes footage. I relate to Dana the most in UOS because we share a lot of the same symptoms. Next week is the big video conference from Lyme Less Live More.
What a great name.

Lewis Center Resident Diagnosed With Lyme Disease

Lewis Center Resident Diagnosed With Lyme Disease

Way to be proactive Ohio!

Lyme Less Live More!

     I came across this yesterday, and cannot get it to go to my blog, but we need to know! Go to lymelesslivemore.com to find out what's coming for us this month! Great interviews, and alternative lifestyles for Lymies. Great simulcast coming up. Register at we-site. Also, get an update on Dana, from UOS, she is heading this up. So GREAT to see a fellow sufferer doing BETTER!!!! Yeah! Let's continue to pour our focus into our Lyme - NOT! At least let's look at LIFE again! xxooxxooxxooxx

Lyme Disease in the US -- 10 Times Higher Than Reported

Lyme Disease in the US -- 10 Times Higher Than Reported

AMAZING. So glad she talks about the MTHFR mutation. Hmmm, the more I research that, the more I understand my particular situation.

What Are Bacterial Biofilms? A Six Minute Montage

 

I don't know if I'm happy to see this or not, but at least I have a better knowledge base.

Bizarre Neurological Sensations of Lyme Disease - Tired of Lyme l Lyme Disease Support & Consolation

This is absolutely the best explanation of what Lymies deal with JUST NEUROLOGICALLY! Nice job, Tired of Lyme. Me too.

Bizarre Neurological Sensations of Lyme Disease - Tired of Lyme l Lyme Disease Support & Consolation

Go Brittany! News Interview

New Lyme Disease Estimate Sheds Light On Prevalence of Illness - WMDT 47 News - Delmarva's Choice

Yes, I know I owe a blog, and it's a good one, trust me. Meanwhile Brittany Goff is just as good.....

Over my Fear?

       I am packed up to go camping for the next three days. I have "Permethrined" my shoes and pant bottoms and I have both Ben and Cerdarcide with me, depending on what I see. This is a big step! After spending most of my life camping, hiking, boating, etc., I backed off all of that for a long time. All I could see was tick territory. I will see it this weekend too. And be prepared......if that is possible. I am happy as can be I feel well enough to go! I'll see Dr. J on Monday, as part of the trip. See you next week.

I've tried it All

        Thinking back I don't know if I mentioned all the treatment methods I have tried in the past.
Homeopathic: I was a homeopath nut for over a decade. Took courses with one of the best and used it frequently. It was good for more insignificant health issues and I did not get relief for the big stuff from Lyme, even under a doctors care.
Acupuncture: Great for short term relief, but expensive, and...short term.
Spinal Manipulation: Part of me felt pretty good short term!
"Tens": Electrical impulse into aching joints. Loved the feeling of the tens, but again, short term.
Massage: The best thing going for detox. Too expensive for me to do every two weeks, but with a trained masseuse in the lymph node system,  I got serious detox relief. On -going this would help keep the system cleaned out.
Rife: Kind of freaks me out. I was too filled with toxins when I used it, maybe now with less of a load in my body it would be OK.
Chinese Herbs: Let no one say I am not a naturalist/herbalist a heart. The herbal mix made my stomach and intestines feel better, but it smelled and tasted like cow manure. That didn't last long.
Teas: Love this as a gentle detox. Use it still, and use as many herbs/flowers from my own garden as I can.
Aqua therapy: Great detox, with effects lasting up to 2 weeks or more for me. See post on Aqua therapy.
Epsom Salt baths: Ahhh, still my #1 way to relax and detox. I always feel lighter and less inflamed from these. ES foot baths great too.
OK, yes, long term antibiotics: What saved my life.
Supplements: Both herbal and always derived from what is already in the body. Boosters.  These I will always use.
I am not done as of yet, as I move through  my new life with a broken body, I find I am moving into new territory all the time. However, thanks to the holistic treatment I am getting now, I have improved, I'd say 80%. That, in my opinion, is the best news yet! :)
The chart is just a beginning of what is available.

Maine Lyme Lady: last part of story....re-visited

Please click on link below:
(and FYI, I am learning there is no LAST part of this story)

Maine Lyme Lady: last part of story....re-visited:   This is a re-post. Sometimes I need to re-visit where I have been, and what my path has been.

Back in the Saddle

     I have been away for a while, taking care of family business and visiting my wonderful family in Ohio. I have thought a lot about the new blogs I haven't accomplished yet. I guess it was good to take a break, but now I am back on the war path.
     In case I don't get a post done this week, know I am going to D.C. next weekend for my next apt. with Dr. Jemsek on Monday the 19th. I will give a full report when I return. I have held steady in ways, and had problems too. I'm eager to have one of those trusted, open discussions with him about my health.  I am certain there will be some changes to my treatment following this appointment. Now, as this is my fist day back, I better go unpack.

Monsters Inside Me Lyme Disease Babesiosis Story 3

                                           Same brave young woman when on Monsters Inside Me. I also have Bb and Babesia, and am still struggling with both though I am probably 80% better, thanks to my LLMD who dares to treat.

Why the government won't allow treatment for Chronic Lyme disease

                                           One very brave young lady who I would love to meet.
  

Theda's legacy for Lyme recognition in Australia

                                       I don't even know where to begin. My heart is just aching.

The Biology of Lyme Disease: An Expert's Perspective - don't miss this one!

                                                


I have been thinking about this the past few days! I want to write a post:

LYME DISEASE THE GREAT IMITATOR??

I THINK NOT, IT IS THE ETIOLOGY OF MANY NEUROLOGICAL  DISEASES.

That's MY belief.

I love this guy, from basement research to Harvard's top. Exactly what he deserves.

New Tick-Borne Illness Could Be Worse Than Lyme Disease « CBS New York

New Tick-Borne Illness Could Be Worse Than Lyme Disease « CBS New York

10,000 people in NY contracted this so far!! A form of the spirochete that is undetected by tests and therefore untreated. ugh.

Maine Lyme Lady: Lymemares (nightmares)

Maine Lyme Lady: Lymemares (nightmares):      Nightmares are often a part of late stage Lyme Disease. I have had many nightmares over the years. I can even recall a repeating nightm...


Re-post, an unspoken symptom

Under The Eightball -- hello...

                                      


 I AM SOOOOO EXCITED! My mouth hit the floor while watching.                          

    

A simple homemade electrolyte drink | MNN - Mother Nature Network

A simple homemade electrolyte drink | MNN - Mother Nature Network
Part of my doctor's regiment is to have electrolyte drinks as well as detox drinks. Amazingly enough, they are very similar! Here's to good health.

Homemade detox/hydration Drinks

YUM! I have started to make these more since the weather up here has gotten hot. But they are great all year round. Here are some of the benefits of these drinks vs. store bought drinks:
The antioxidant level is high because the fruit is fresh.
Water soluble vitamins and minerals such as vitamin C and potassium, are extracted into the water overnight.
Increased fiber intake with the fresh fruit.
Staying hydrated and enjoying the fresh taste and look of your drink.
Make sure you eat the fruit at the end!

So, here are a few tried and true drinks:

Blackberry/Sage:
10 cups of water, 1/2 cup blackberries and 3 leaves of sage, crushed slightly. Let sit overnight.
I was surprised at how good sage is in a drink. I'm stuck on it now and try it with many fruits. SAGE HAS THE HIGHEST ANTIOXIDANT LEVEL OF ANY HERB.

Watermelon/Rosemary:
1/2 cup watermelon and a good sprig of Rosemary to 10 cups of water. Same instructions.

Pineapple/Mint   (for you Megan!)
1 cup pineapple and 12 mint leaves slightly crushed to 10 cups of water. You get the instructions by now.

Ginger:
1 teaspoon of fresh ginger chopped in 10 cups of water.

A couple of my personal favorites: (I went a little crazy here, but I like to experiment)

Watermelon/sage/grapefruit/lemon - a surprisingly good combination.

Watermelon, mint, lemon.

* I add fresh lemon to almost every drink. Make up your own, and alter the size as you wish.  Adding 1/4 of a sliced grapefruit is amazingly good too, esp. with sage.

You get the idea; fresh fruit, herbs/medicinal plants, water, and let soak overnight. Sometimes I don't have the patience to let it sit, so I forgive myself and drink it down, then make another for soaking. Such is life. Live it.

Mayday 2013 March Around the Whitehouse

MayDay 2013 'Die-In' - Lyme Disease Protest

MayDay 2013 Part Two

Pic of my tick bite

Lovely, isn't it? This is one of the 4 known tick bites I have gotten over the years. Notice, the tick is still attached and NOT engorged, and infection is obvious. DO NOT believe the myth that a tick has to be on you for 24-48 hours in order to infect you. This tick bite was the second in the same year, about 3-4 years ago. It put me over the edge to becoming a failure to thrive person. I was dying slowly. Praise God for Dr. Jemsek, the only doctor out of many, who has a protocol to help all tick borne infections. If you are bit, get help right away. At least three weeks of doxycycline if you catch it right away. Don't stop until you find a doctor who will treat you. Trust me on this one. I had to do that myself.

up, down, all around

     I should be writing a post but I am too tired. I am in the middle of my last week of 'holiday' from treatment cycles. I have done so well! I have to keep telling myself how it used to be. I keep forgetting. Give me a good day or two, and my bad days are all but forgotten. So, why am I so tired? A bunch of reasons I suppose. Most of all, I have been super busy. Which is great, esp. since I used to have a much shorter 'shelf life' than recently. The biggest fallback to being busy is that it exacerbates symptoms if I am not careful. Yesterday I cleaned my poor house all day and fell asleep for the night at 7:00. Today I woke a little nauseous, but still went out. Tonight I am nauseous and tired and sweaty and clammy, and yucky. Monday I start my new treatment cycle. It will get better or worse, I don't know until I do it. I dread it and yet it saves me. Like Chemo for someone with cancer I suppose. You dread it, but it can make you better.
   Push through it Amy, you can do it.
   Goodnight. And pay no attention to the fact I make no sense.

Lyme Relief

  

        In my last personal post I reported how lousy I felt and how discouraging it can be to be haunted from Lyme for years on end. Because it hides from antibodies and antibiotics, you have to KILL all forms of the infection, at the same time, over and over and over and over again. Even then, I won't kill them all. Bummmer.
        However, I do feel better today, my fever lifted for now, my headache is gone, and I have let go of my discouragement once again. I am still tired, even after just waking up. It's not like it used to be, I used to be 80% in bed or on the couch in these deep "Lyme Coma's". I couldn't wake from them. They seldom occur anymore.
        The biggest Lyme relief occurred yesterday. I got home from a quick trip with my mom and daughter, and on my front steps were two beautifully made flower pots in beautiful clay pots. And they weren't tiny, they were large and packed with my favorite flowers. No name, no card, just a surprise left for me. Instantly, my discouragement went away and I was filled with gratitude for people who love me. NEVER underestimate the power of friendship and family. It lifts me out of my funky times, and gives me hope my life is still meaningful. (esp. since I don't talk on the phone much or go out to visit much) No one is fessing up to the deed, so I have to play detective now. Good, that will keep me busy.
        THANK YOU WHOEVER YOU ARE!!!!!!!!!

Lyme Disease in the South

Lyme Disease in the South

you have got to watch this brave young woman

My Lyme Day Today

      Today has been kind of hard. I started in on low grade fevers a couple of days ago. Lower back pain and mid spine pain. I can now tell if the pain is deep in the spine or inflammation around the disks. That's how long I have been experiencing this.
     Today is the kind of day I don't even tell my family about anymore. I just slug through and pretend I feel OK. They are so sick of my being sick, I feel like I don't want to say it anymore. I feel like a sub-par (to put it mildly) mother and wife and daughter. I can't be as active and energetic as I was way back when they were younger.
     Today I have to pray, lay, and fight.
     Today I need to remind myself that for decades I could not walk without feeling like I had no feet and I was walking on my exposed ankle bones. ouch. I had no appetite, I slept hours and hours and hours. I was confused, got lost driving, got pretty depressed and discouraged. Every joint in my body ached. I had headaches for days at a time. Etc., etc.. I was slowly dying, being eaten alive by parasites and bacteria. I spent many a night on the couch begging God to lift this from me. There was more than one tear.
    Today I am remembering that God lead me to a doctor who is helping me.
    Today was kind of a good day, in retrospect.

MY FB page

amyjo.sirianni@facebook.com

Lots and lots of good information

Jordan Jemsek meets blood marrow donor | CharlotteObserver.com

8-year-old Jordan Jemsek meets blood marrow donor | CharlotteObserver.com

Dr. Jemsek's daughter. This family knows the score. A strong family with a lot of faith.

WW Lyme Protest Photos

    On my Facebook page, as Maine Lyme Lady, you will find a whole lot of pictures from Lyme 'mobs', and protests from around the USA and the world. It makes an impact when you see them all together. There are a lot of us! If you are on FB, you should be able to find me at Maine Lyme Lady/Amy Jo Sirianni.  Go Lymies!

Students Tell Of Lyme’s Impact In The Classroom - Leesburg Today Online—Daily News Coverage of Loudoun County, Leesburg, Ashburn: News

Students Tell Of Lyme’s Impact In The Classroom - Leesburg Today Online—Daily News Coverage of Loudoun County, Leesburg, Ashburn: News

Tick Talk Ireland supports worldwide lyme disease protest

 Look this up on You Tube, worth it. The name of the video is above. You may also find it    at the worldwide protest web site or FB page.
 The pic of the doc seen is my doctor in D. C., all the way from Ireland.

"How goes my treatment?"

      I am happy to say my treatment is going very well right now! Since finishing up the heavy duty treatment for both Borreliosis and Babesia, I am reaping the benefits.  I love when this happens. It is a slow process of feeling good a few days, then, if treatment is working, the good days stretch longer, and the sick days decrease. I've been experiencing this a long time. (see first blog entries) Here is the best part; since enduring the winter treatment plan, I now feel terrific, and haven't felt this way in a very, very long time. Many years, as a matter of fact.
       I ended my winter plan in April, had three plus weeks off, then began the new treatment plan, a much lighter one. It was much more easily endured, and herxing was light, happening the last three days of the two week plan. Now I am off treatment, for three weeks. It will be a good measure of how well I can hold my own. I'll be doing the two weeks 'on' (but only three days a week) and three weeks 'off' all summer, so I will be posting how I hold up. I have not had a three week 'off' cycle since beginning treatment. This helping to build up my own bodies ability to fight the infection on it's own, and helps gauge how much bacteria, etc. has been irradiated. How well I hold up during extended 'off' cycles is an indicator of a number of things. Detox is the name of the game even more now. I am in a good place to finish my goal of maintaining a healthy liver and lymph system so detoxing on my own can be effective.
      I am praying this is truly the beginning of the end, and I hold up. If so, I decrease treatment once again when I go back to my doctor in August. Meanwhile it just plain feels good to feel good.

Lyme disease: Price skyrockets for doxycycline antibiotic | Minnesota Public Radio News

Lyme disease: Price skyrockets for doxycycline antibiotic | Minnesota Public Radio News
 Great. What else can happen to delay treatment? Ugh.

LD Awareness Day - ABC Channel 3 - Top Stories

Lyme Disease Awareness Day - WEAR ABC Channel 3 - Top Stories

Lyme Awareness Pictures, May 4th 2013

Lyme Mob in Maine!

       Yesterday was the big day. Kickoff to "May is Lyme Awareness" month. Local businesses donated everything needed for the event, such as copies, tables, venue, water, and even a tick sculpture. My fellow Lymie friend and I brought our personal stories, and information from our different treatment plans. Very interesting. There are many options for treatment and people pick and choose to their liking. Seems like I have tried it all from homeopathic, to acupuncture, massage, hydrotherapy, over the counter pain killers, and vitamins and supplements. Not to mention antibiotics. My personal recommendation is to do them all, under the care of someone who knows the immune system and the bodies cellular needs. I feel blessed to have a doctor who is well rounded in his approach as well. That makes us a good match.
         At the Lyme Event, we set up tables, had information out our ears for people, and a generous amount of information from  my Vet on pets. I brought my dog who was diagnosed with Lyme two years ago and treated with three weeks of doxycycline. It was a general 'joke' that if you want more than two doxis' you need to go to your pets Vet. Not funny. We heard too many stories of people who were actually diagnosed and given 1 to 2 to 3 pills and told that was all they needed. I feel so sorry not only for those folks, but for doctors. The doctors today are stuck between a rock and a hard place. I'm not sure how hard they are fighting to get out of that spot, though. It is easier to leave it to  specialists, it seems, and specialists who are effective in getting people BETTER are few and far between. And so the saga continues. One day, just like Polio, TB, and Aids, Lyme will be figured out, and a protocol which actually works with be determined. Ticks of the future will have to live with it. It's the people in between now and then who will suffer, being left with unanswered 'mysterious' neurological deficits.

ILADS video - Joseph G. Jemsek, MD

ILADS - Lyme Disease Conferences Videos - Joseph G. Jemsek, MD

yes, my doctor. praise God.

At Home Tick Drag

YOU TUBE VIDEO, title above, easy to find on you tube.

This is something easy to do at home! You can find out what is in your own backyard.

My Lyme Story in a 'nutshell'

Feeding Frenzy: Science's Battle Against Ticks

Feeding Frenzy: Science's Battle Against Ticks

this is the most menacing tick pic I have ever seen, never mind the frightening article

Lyme disease patients step out of the shadows | CapeCodOnline.com

Lyme disease patients step out of the shadows | CapeCodOnline.com

Lyme/ALS connection

GIVEN A DEATH SENTENCE

Dr. Martz in CO., many thank you I'm sure.

lyme apt. at JSC results

      I will always be grateful for the help I have gotten and continue to get from Dr. Jemsek. I know all the controversies, trust me. IDSA vs. ILADS, chronic vs. post lyme, antibiotics vs. alternatives, etc., etc.. BUT, for me, the only help I have gotten which has made a difference is from the expertise of Dr. Jemsek. Yes, it's been hard. Better to be battling for life, than unable to battle at all, though. That's where I was when I started with him. Unable to battle anymore, and losing the battle. There have been times in the past two years when I wondered what I was doing, and if it was the right thing. How does one have faith in treatment when treatment is hard and progress is slow? I don't, but I have faith in the good Lord above and I know he has his hand in this. My saving grace. Literally.
      At my apt., Dr. Jemsek and I discussed my latest symptoms compared to the ones I had in my September apt. at my January phone consult. I was able to report the ongoing fevers/sweats/chills had gone away since January. My top three concerns were fatigue, limb weakness, and word find.  He was not terribly concerned about these, as we are moving on the direction of getting rid of them. He did a thorough check of my neurological reflexes, and for the first time ever I was not sore to the touch anywhere! Not my neck, back, jaw, nothing. No twitching, no spasms, no pain. It was like I was a normal person. Even I was surprised! What a difference to be 'normal'.
     One of the most encouraging things was that he recognized that my Babesia is basically taken care of! That is why the fever chills have gone away.  That is why I can smile again! (at least some of the time....)
     However, no, I will not be taking the summer off from treatment. It was a nice fantasy, but that's it. I will be having a severely toned down treatment. I will have a much lower dosage of antibiotic, this time with Minocycline (another parasitic to get any left over Babesia, should I still some lingering). Two weeks on treatment, three weeks off. Should be good. Looking forward to a summer of feeling well most of the time. Yes, I will continue to feed my cells all the supplements they need to grow and regenerate. And eat right. Farmer's markets are just around the corner. Again, I am happy to have a doctor who tends to the whole body, and making me healthy on the cellular level. Without healthy mitochondria, we can't do too much.
     Interestingly enough, I realized I really was on the road to recovery when he described my brain as having been flushed of most of the biofilms and spirochetes and that I should pursue activities to rebuild areas of my brain which have been damaged. I just love that! I had one LLD tell me damage was permanent. Let me tell you, when you have a father like I did, whose heart regenerated a brand new artery around the damaged area, all by itself, you have an understanding of the capacity of the body to regenerate. My brain can be healed. (I know, some of you who know me are laughing) But in all honesty, even though I need to pursue it, I can do it. My biggest eyebrow lift came when he told me to start pursuing something that I have always wanted to do, but never have, as part of the brain stimulation. That was like opening the world to me again. Of course, the thing I have wanted to do is write a book. So, write I will. That ought to wear me out again. Guess the subject.
     The last thing I asked about was my stamina (fatigue related I think) and how to build it up. I complained that every time I have tried in the past to exercise,  I have paid for several days afterward, with pain and malaise. He assured me I should be past that point. What? Is this possible? I'll let you know. We all (my husband too) talked about Physical therapy vs. just doin' it. I admitted I needed motivation, and a strategy so I don't overdue it, and thought I could get that with P.T..  Evidently not. We took time right there to set up a plan of action until next time I see him. Just like in the old days, I need to stretch out, get my heart going a bit, then go for a nice gentle walk. I can expand as I am able.  PLEASE someone hold me accountable! I desperately want to be able to ride (horses), drive (cars), garden, hike, run, swim, wrestle with my dog, anything. I'll do my best.
      That's enough for me today. I am well on my way to recovery, but I want to keep on track, not go backwards. I need a little rest. Then time to make dinner. I am a very grateful woman today.

Cost of Seeing Dr. Jemsek Worth Every Penny

you.tu.be/DK0F9Ts8w8

or go to you tube and search title above. Thank you Claire!!

Another appointment Friday

    I am pretending that my doctor in D.C. purposely gave me an April appointment so we could see the cherry trees in blossom. In any case, it turns out that way, so we will be walking Cherry Blossom Way on Friday before my appointment.
    Today there was no pretending when I had to fill out the forms for my appointment. Dr. Jemsek now has a patient portal on his web-site. I can download a form to fill out and bring to discuss with him. Better to have a few days to think it over and write answers, than to try to remember on my own, or leaf through my notes, when he asks how things are.
     The first question is: What are your three biggest concerns right now? I answered for two so far. Fatigue, and limb weakness. I tested this against my husband, and not so surprisingly, he said the same thing. There a lot of 'number threes', so I will think about it. I'll have all day Thursday in the car to write that one down. I am eager to have a discussion with Dr. J about my progress so far and where he sees me along the spectrum.  My secret mission is to 'take the summer off' and see how I do. I'm not sure if that is a good or bad idea. I still suffer from the revenges of Lyme Infections, but even today, the suffering I have is about 10-20% of the suffering I had 2-15 + years back. Ooh La La, I don't think I could take that. This is bad enough thank you. I don't know how I did it. I don't know how an of us does it.
     "I tell you, take up your mat and go home". I'm taking it.

Yolanda Foster's Experience With Lyme: LRA Gala

youtu.be/6djL18fXj8

Watch how she stops to take her breath, and how she leans over to rest of the podium. Her story is way too familiar.

Forks Over Knives :: rogerebert.com :: Reviews

Forks Over Knives :: rogerebert.com :: Reviews

Our Lyme / Autism Story

http://you.tubek4x2LdQmHry

You can find it on you tube if you can't open this. Some Autism is definitely Lyme. Especially suspect it if the child is oversensitive to light, sound and touch. Off and on low grade fevers, lethargic. It could take 2 years for the fetus's bacteria to grow to a point there are enough to effect the child. Please check your kids through IGenex Labs in Palto Alto CA.!  Rule out everything you can.

Bill would protect Vt. doctors treating chronic Lyme disease - WCAX.COM Local Vermont News, Weather and Sports-

Bill would protect Vt. doctors treating chronic Lyme disease - WCAX.COM Local Vermont News, Weather and Sports-

VPR News: Lawmakers Consider Coverage Of Long-term Lyme Disease Care

VPR News: Lawmakers Consider Coverage Of Long-term Lyme Disease Care

$41.7 Million Verdict - Lyme case

This is BIG. 
I have suspected this is the reason our states/government won't fess up to the epidemic. It would cost them a fortune.
$41.7 Million Verdict Against Hotchkiss School in China Trip Case; Appeal Planned - News - Housatonic Times

I celebrate Easter

DaySpring E-Cards

Niantic woman experiences the nightmare of Lyme disease

                So familiar, and we have the same doctor now.
         Niantic woman experiences the nightmare of Lyme disease

Lyme Detox Review

    A quick list to review detox options:
                  SWEAT. 
1. drinks such as water, lemon water, and green tea
2. take hot steam showers - drink h2o
3. take hot Epsom Salt Baths - drink h2o
4. poncho on, with feet in a bucket of hot water (watch internal temp, low grade only,
    for a short time, alt. with cool down) drink h2o
5. sauna - drink h2o
6. massage - drink h2o
7. hydro therapy - drink h2o
8. no processed white sugar
9. no gluten
10. take antioxidants such as Omega 3s, Vit. C, Bs, D and more
11. eat healthy; mostly veggies, fruit, yogurts, nuts, green leafy foods, etc.

    I try to do all of these. One day I hope to get it right. Please fill me in on detox methods I have not included.

AquaTherapy/HydroTherapy for Lyme Patients

      I may have made up AquaTherapy, but it is the same as HydroTherapy.
     A couple of details I didn't mention. The same as when you have a massage, when done with Hydro Therapy, you must drink a lot of water. This flushes the gunk out of your lymph's, through your liver and kidneys and out of your body. I was intensely thirsty a few times afterward, and drank  quite a bit. I kept my body well watered.
     Just as an interesting side, massage is a viable detox as well. Way back when I was working and had good insurance, but no Lyme treatment, I had massages every two weeks. I had to be very careful who worked on me though. If uneducated about the frailty of the muscles and joints, damage can be done. Pain can be deep, and hurt for a long time. So, I had the lymph expert work on me. She was very gentle, and worked my lymph system, draining me. It was very effective. However, I did go through a pretty intense herx afterward. It took two - three days to get over it, but then I felt great for a while.
     As I go along I realize just how powerful and important it is to keep my body well detoxed at all times. It may not be a cure, but then again, what is?? If this helps me be active and feel better, even for a while (until needed again), then I am all for it.

AquaTherapy Update

      I am impressed. The difference in how I feel is unimaginable more than I would have asked for. Here's the only detox issue hanging on; my left lower intestinal area is still a bit inflamed and sore. I had this IBS as it is/was called for years without knowing what is was or what was causing it. So, it is an early symptom coming back to haunt me. And much of it due to diet. Which, I have to admit, with company over the weekend, I did kind of vary from my regulated diet. For whatever reason, the Aqua Therapy intensified this and I am still having some pain there. Otherwise I feel better than I have in weeks or maybe months. And it is so simple if you think about it! Water. Hot and cold water. Used the right way, in the right sequence, it is invaluable.
       I was informed of two other ways to achieve a steam bath. The cool off period is a little more difficult to achieve when doing this on my own. When taking a shower, the water can be turned hot and then noticeably cooler in the same sequence. Not as effective, but I figure a good way to do a daily quickie. The other method is to have a large hooded poncho, and a tub of hot water. Put on the poncho with the hood, and sit in a chair with your feet in the hot water. Make a tent over the hot water. Alternate with a short cool down.
       Simple, right? I'll let you know.

AquaTherapy Detox

    I have never heard of it before. Aqua Therapy. A detoxifying process for the liver, kidneys, and lymph nodes. It sounded good to me. My friend explained the detoxifying process, so I gave it a try. Glad I did.
    Here's the procedure, as I received it. First, you lay on a massage bed, left side down, right side up. This way, the liver is on the upper side, and both kidneys can be reached. A couple of specially made wool towels are laid in water that is 200 degrees. One towel is placed over the right upper side, and down over the back, covering all organs. This stays on for 3 minutes. It is then replaced with a cold towel press for 30 seconds. This part was accompanied by a lot of wincing. The whole process is repeated six times.
     Second, is the upper lymph nodes. Lying on my back, the hot towel press was laid under my chin and around my neck. It stayed on 3 minutes, and the cold press for 30 seconds. This was repeated six times as well. The whole event took about an hour.
      I admit I was sceptic, but no more. Yes, I have had some uncomfortable 'cleansing' of the toxins. However, the left lymph node on my neck is back to it's normal size for the first time in over a decade. I feel much better. Less nauseous, less stiff, more energy, more hunger. All good.
      Here is as much as I understand, you may want to investigate it yourself as well. First, you start with the liver and kidney's to drain them and clean them out, getting them ready for the gunk in the lymph nodes to have someplace to drain to. There are more particulars about the hot/cold stimulating the immune system, and an increase in white blood cells, hence more fighting men in there to KILL KILL KILL the infection. All I know is that for the past few weeks I have felt lousy, and have felt sick. I have detoxed, yes, with Epsom salt baths, teas, lemon water, water, etc., but this was like a wham bam double punch to jump start the body.
       Lesson for the day: I need to detox more often and more intensely.
    

Worldwide Lyme Protest - Australia 2013

http://youtu.be/u9c6jjyDYYU
Worldwide Lyme Protest - Australia 2013

WOW. Mind boggling.
The first video of the protest. Go Lymies, Go.

Never Fear; Gluten Free Beer is Here!

Never Fear; Gluten Free Beer is Here!
FYI

TBDA show Response

      I just finished watching the TBDA 'show', as they called it, (appropriately) and can't resist a few comments. First of you should know that concentrating that long (1 1/2 hrs.) has made my brain go into the 'brain fog' stage they spoke about. So, I will keep it short for today.
      I just had to shake my head at the first slide shown which said 60-75% of all Lyme patients have the bulls eye rash. NOT. How can they ignore all the patients and other research that has shown this not to be true. In my research, I look at all sides of the issue.  The consensus  I have come to is that approximately 30% of patients present with a rash, never mind a bulls eye rash. Old information that is just plain wrong. I certainly never saw a rash and I tested positive by CDC standards only after sending my blood off to a reputable lab. I had my blood tested a number of times before, with only one or two LD bands showing. I was refused treatment. Thanks, Cornell for spreading that myth worldwide.
       Secondly, they claim it takes 3-5 days for the spirochete to reach the brain. What a crock. The spirochete can get into the bloodstream in seconds, and reach the brain in hours. Again, this comes from my well rounded study of many researches.
       I think all the presenters believe the recent CDC guidelines are correct! They say it is based on research which does not conclude that Bb and co-infections need more treatment than the three weeks. Wish that was true for me. And so many others I have had contact with. Makes me mad.
      The panel continued to refute other research such as the Embers monkey research. They would not agree that lyme infections can persist actively after treatment. Even after IV treatment.
       That's about it for me. I will say there was very interesting information on upcoming research looking at diagnostic markers and test development. I pray the right person is doing the research and presenting a true tool.
       I had thought for some reason TBDA was on the same track as the research which is out there in other places. Evidently I was wrong. Another fine example of the competition between researchers to be THE ONE to find the 'cure', 'test', 'marker', 'effective treatment'.
       Oiy Vey

Thank God that's over. (I hope)

    I just love  a good herx. One of my favorite things to go through. NOT. This time I had various symptoms as described in last couple of posts. It went on for about three or four days. Don't tell my doctor, but I stopped my meds. two days early because I could not take the nausea. Even though, I experienced the herx full through. I think. I am still uncomfortable and my left shoulder and neck have a severe burning sensations. So, it may not be over, or it may be an 'episode' that will go on for a while. I just never know.
   What I do know is that it feels good to move on from the nausea because that is one thing I can't take. There is nothing one can do to get away from it. Same with a fever. It makes me unable to function. And, even after all these years, I still take a day or so to realize it's the fever making me feel bad. My fevers run from 99 - 102. (my normal temp is 97.4) As soon as the fever lifts I have energy. So I go like crazy, then up pops the fever again. One of these days I'll learn to lay low long enough to really be well before I get going again. My fever lifted yesterday, came back last night, and now today seems to be gone, although I overdid it today again. It's just that it is so hard to be the one (for years, and in my case decades), who is too tired, too sick, too stiff, too feverish, too brain dead to be of any good to anyone. I believe even above the very serious pain I have been in, not being able to help, to feel like I am contributing, is the hardest thing.

Add sweats to that

     Nausea, yes. low grade fever, yes. confusion, yes. clumsiness, yes.
     sweats, yes. Soaks between my ribs, yes.
     Herx, YES.
     Menopause, no. I know my herxes.
     Go, body, go! Fight, fight, fight!

Makes me Nauseous

nausea. nausea. nausea. nausea. vomit. nausea. nausea. ginger tea. nausea. sleep. wake nauseous. nausea. nausea, nausea.....

I'm Tired

       I haven't been feeling great for a while, those bugs must have become active during my holiday.  It amazes me that after all the years of treatment, time, and all the money spent, that they still live in me! Gross!
      Apparently, as I mentioned before, the thought is, that I am still harboring bio-films. The hardest place to root out spirochetes is from inside a bio-film. I have no idea, truthfully, but I picture the bio-film as being somewhat like frogs eggs in a pond. A covering that is viscus, gel like, and strong. Every once in a while, something triggers my symptoms to raise their ugly head, because spirochetes have exited the biofilm, and are munching. It can be any symptom, depending I suppose, where ever the spirochete lives, it will start there for nourishment. I wish I could pin point them in my brain so I could see the area where they are vs. the symptoms I have.
     This time around I have had just no energy at all. I wanted to sleep all the time. I have pain in my neck and shoulder. Always a sign that a 'good one' is coming. Yesterday I spent the day in bed with more nausea than I knew what to do with. Epsom Salt baths every night roots them out, but risks a herx, or increase one already in progress. But then, that's the name of this game.
 

RIP

  All of a sudden I am receiveng these type of reports.

  RIP George and Jonalyn Strobes, of Texas. Late stage Lyme suicides. July 2010.

Journey Thru Lyme video 001

'Needy Meds' to Help Save on Medical Costs

'Needy Meds' to Help Save on Medical Costs

hmm, I worked with autistic children, I've wondered...

Long term antibiotic therapy may be an effective treatment for children co-morbid with Lyme disease and Autism Spectrum Disorder

RIP

Jeremiah Katches from Auburn CA. RIP
Don't even try to say Lyme is not deadly. My doctor saved my life. Thank you Lord for leading me to him.  I was dying, then I went to him. I am alive and doing well.

another RIP

Keep reading, the Lyme part is toward the end. :(

Hugh Wiberg: A man who loved his family, outdoors, and sports - Wilmington Town Crier: Sports: The voice on the phone sounded willing, but not all that able. Hugh Wiberg, one of the nicest men that this writer has ever met, was just bein…

my dog

     I never know what the day will be like when I get up. This morning, out of the blue, my dog has a seizure. Turns out the seizure went on a total of about 1/2 hour. She was contorted and looked very strange. In between she would rest, and pant, for a few minutes before seizing again.I have never witnessed a seizure before, but my friend, Debi has a dog who has seizures. She told me you just have to be with them until it is over. Their dog was immediately better, walking around afterward. We went off to the vet after a phone call, and learned a lot about seizures. Her seizure could have been life threatening, because it went on so long. If it happens again off to the vet again we go, right away.
     In my little Lyme world, steam was coming out my ears from thinking. I know Hallie had a positive Lyme test when she was a puppy. She was treated right away with three weeks of Doxycycline. I know seizures can be a part of Lyme. I  take seizure medication myself. She has shown no other symptoms though. The vet said dogs who have epilepsy usually have their first  seizure around the age of 3-4. Hallie is 31/2.
     Hallie was down and exhausted all day after that. She was lying down with all limbs and head just glued to the floor.
      Today I noticed a very sullen looking dog. Then she raised her front paw the same she did during the seizure. She did not go any further. It is like she knows she is not the same. She is looking sad today. Lying by herself and not playing. I feel so bad for her.

Dr. Eva Sapi - Bacterial Biofilms and Lyme Disease

Done with next Treatment Cycle

     I finished my antibiotic treatment for this month. It seemed like a tough one. I have felt too much like a chemo patient to do much of anything. Fatigue reared its ugly head, as did the 'sit and stare' episodes. I felt weak and dropped a lot of things. I have lost a number of casserole dishes during these times.
     Dr. J also changed a pain medicine and that took a while to titrate up to a useful amount. This made a me little nauseous at times.
     I took a lot of naps. I always felt a little more energetic after my nap. I had been able to be active until about 3-4 in the afternoon, and went to napping by 1:00. I haven't experienced that kind of fatigue in a long time. Sometime during the IV treatment it stopped.    
     I still feel good in an important way. I feel overall better than than in a very long time. I know I am down to fighting biofilms. Other bacteria and parasites have been cleared for the most part.  I can have a break out of symptoms when the spirochetes exit the biofilms and party in my body. I still need to watch when symptoms flare. I'd love to get to the point where I treat myself just at times when I am experiencing symptoms.
     Now I am on vacation, or 'holiday' from treatment for the next 2 weeks. During this time I will be sure to detox and use my supplements so my own immune system can get stronger. The less symptoms during holiday the better. It means your body is holding up on it's own. I just need that to be happening all the time.
     I am getting there, and I know that.

Ode To Lyme

                                    Ode To Lyme

          "I'm tired"

          "Oh, I get tired too "

         My neck hurts

         oh, I know how that is, I hurt my neck last year.

        My joints hurt

        I have arthritis in my knee

        I get heart palpitations

        I get them too

        I keep having low grade fevers.

        My kid has a fever

        I feel like I have the flu.

        I had that a little while ago.

        I can't remember

        I forget things all the time

        At the same time I feel like I just want to sit and stare, can't get up to get a drink for
        45 minutes; have shoulder, arm, finger, and leg spasms. I hit the wall of fatigue and
       sleep.

        I don't

        I know.

                           

       Amy Jo
    Maine Lyme Lady

             

Flu with a twist of Lyme

I've been out sick for the past week. I still don't feel like it's gone completely. It is true that symptoms of Lyme become more obvious at times of stress. The flu is stress. So I ended up with some kind of misery for three days and the rest of the time not having the stamina to do much of anything. When I questioned my doctor at my apt. last week about how stress brings out symptoms I haven't felt in a long time. Basically he reminded me we are still dealing with bio-films.  I'm assuming they are the same bio-films I'll be dealing with for a long time.

Australians speak out

             We're all in the same sorry boat.

gluten free is good for Lyme patients, decreases inflammation

Gluten Intolerance: Is It A Fad?

Virginia Passes Important Lyme Bill !!

MML Face Book page

I have some articles and information on my FB page which I cannot get on here. Please check facebook.com/groups/mainelyme lady.

LYME - Messages of Hope

Proper treatment=hope

Maine Lyme Lady: Flash Mob Day!! Call to Action!

Maine Lyme Lady: Flash Mob Day!! Call to Action!:                          Lyme Disease                          Flash Mob Day                   May 4, 2013                            ...

Russian/Portuguese study on birds and Lyme

First study on birds as hosts of Lyme Disease - English pravda.ru

New Lyme Times out

http://myemail.constantcontact.com/Latest-issue-of-The-Lyme-Times.html?soid=1101915345495&aid=YP-ZIvBUTDA

Flash Mob Day!! Call to Action!

                     Lyme Disease
     
               Flash Mob Day
 
            May 4, 2013                          


   Organize a group to wear T-shirts, or just
     wear one wherever you are. Contact:

                twistoflyme@gmail.com.    

          A group wil be happening on RT. 1     
                     Waldoboro Maine

 

  We will gather together, wear lyme green
T-shirts, hand out information, provide food/snacks/coffee, balloons and any other attention getting activity. The point is to provide the public with the truth of chronic Lyme Infection and co-infections, and where to go to get help.