MCS: Exposure Reactions

I am writing this for educational and journal purposes only. I hope you find it helpful, if not for yourselves, than for others.

We ordered a new bench from Penney's and it came Wednesday. Joel opened it on the porch and was checking out how to assemble it so I decided to go out on the porch to look at it, even though he told me it smelled really bad. I figured it was outside and the wind would take away the smells, but I was out there 3 minutes and my nose started to burn.
I immediately left, but it was too late.

By Wed. evening I had a headache but thought that was all. Thursday morning I woke up feeling very ill with a bad "throw up type" headache and sinus problems. By afternoon I had bone and muscle pain, nausea and stomach pain, heart pounding, liver actually hurting, and brain fog so bad that when Joel asked me to tell him what time it was, I could not remember how to read the clock. I finally just said to him, it is two minutes before the 8 on the clock face...??? I was so tired I took 5 naps and went to bed at 8:30pm not getting up until 7:30am. For the first time ever, Joel and I were both frightened by my reactions. Today I am having less of all symptoms, but I do expect a week of recovery. Needless to say the bench will be returned.

I have had many people brush off my need for a fragrance free/chemical free environment because they think I am being dramatic. I have had others ignore my requests and then wonder why they are not invited to come over. Even Joel and I have sometimes gotten lax about shutting windows or the smells that he carries in to the house. I was doing better with some fragrances and I think that this made me over-confident. This experience set us back on track.

People who have multiple chemical sensitivities are putting their health at risk each time they are exposed. My LLMD told me my liver does not detoxify like it should and I think this may have happened so intensely because of being exposed to chemicals two weeks ago, and the overload my liver went through with all the meds in June and early July. We don't know for sure, but we do know that we are back to being alert and making smart choices when it comes to exposures.

CFS Adrenaline Supersonic-Surges

It has been a long time since I have felt so frustrated, angry, and anxious, along with a desire to escape my own body. A very loud ringing in one ear and a shhhh noise in the other along with lack of sleep brought me to a very ugly place. In my first post on this I mentioned all the meds I had been on in the past month which could have contributed to my tinnitus. I went off 3 the middle of July because I was finished with 2 and my body rejected the third. As of this morning I was only taking the Zithromax and Zantac but I made the decision to stop both. One ~ the Zantac~ for good...the other ~ Zithromax for now. My doctor okayed me getting off the Zantac which is a good thing because as much as I am a rule follower, there was no way I was going to continue it after my allergy practitioner's muscle testing came up with that one being the main culprit. Zithro is doing some good zapping the Bartonella and Lyme, so I am really hoping that once the tinnitus is down to a dull ring-a-ling I can go back on the Zith.

I managed a 15 minute nap with our large air purifier giving me enough white noise to keep my ear's high pitched squeal less noticeable. That was nice and I will try it again tonight. Someone suggested white noise to me and it did help. Thank you.

I was trying to figure out why this one thing sent me so quickly into the ~adrenaline surge and everything-is-an- emergency mode. I was able to look back at my blog and my logging and see where things started to escalate for me. That is one of the main reasons I write about the ups and downs in such detail...so I can go back and "see" the journey ~ what works, what doesn't, where I have been and where I am going.

Life began to feel like a roller coaster ride with the death of my dear brother in law and continued with Joel's diagnosis of Lyme and his need for a medical leave. Things kept escalating with my treatment for H Pylori and what that did to my body and mind. We can add the yeast treatment, and several other emotional situations. The already boiling pot quickly spilled over with the tinnitus getting so bad ,resulting in sleep problems. Recording all this will give me some insights and hopefully some tools that will keep me from experiencing the aftermath of a big adrenaline explosion in the future.

What does the aftermath of a CFS supersonic adrenaline surge look like? Lots of anxiety and tears with doomsday thinking. Sound, smell, and vision senses are hyper-intense. Internal shaking and neuropathy increase. The mind races ahead like it is "very late for an important date". Deep sleep is evasive and light sleep is often joined by strange exhausting dreams. The heart pounds, the breath shortens, and the muscles tense. Every problem looks like an emergency. This can last days for me. My CFS/LLMD says it is from adrenal burnout. I just know I need to set up perimeters to keep it from happening so much.

What helps a person recover from this supersonic surge? Each person is different, but for me ~ Time mostly, and a lot of rest, quiet, meditation and visualization cds, deep breathing(alternative nostril), journaling, and alot of bonding with my sofa are in order. Out of envelope activity must cease. Distraction helps. A good book, a funny TV show, the sounds of nature. A lot of prayer, focusing on the positives, and reaching out to others who understand. A good long hug when needed by a patient and loving hubby. Boy, am I blessed!

What prevents these adrenaline surges? Planning your days, limiting your stress when possible, keeping surprises to a minimum, getting enough rest, and setting firm boundaries.


So, now I wait for the levels of tinnitus and stress to go down. I remember that killing Lyme and getting better is the long term goal. And most importantly, I search inside and out for what is best for me.

The Down Side of Medication

I have been taking Zithromax for a year. I had to start slowly and build up along with Mepron. With that came more ringing in my left ear. Loud ringing, but I could tune it out enough to sleep, etc. Then I was put on Clarithromycin, Flagyl, and Ranintidine (perscription Zantac) and it got worse. And worse...until now it is so loud in my left ear that I can hear it over the TV and other noise AND I am having trouble sleeping at night.

After a very short and stressful night's sleep, I started doing a google check on the meds I have been on in the past month and 5 of 5 list tinnitus as a side effectt! ALL OF THEM! Right now I am so angry I could scream. Here I am, trying so hard to do what is right to kill off this mean and ugly disease slowly making progress over 2 years of my life. The progress I AM making is good but what about the problems the medications are causing???? And now one more problem has come up. Besides that, all the research I am reading that says long term antibiotics for people who have untreated lyme for years does not work very well.

Right now I am exhausted and just want to sleep...but it eludes me...and I am not going to add one more med to this pile of pills to make me sleep. Not one more pill that does more harm than good. Today I am DONE.

First do no harm.

Happy Birthday Number One Son!

It is our oldest son's 38th birthday today and I wanted to share a bit about our super son.

After graduating from college M. went into training and became a police officer in a larger city. Not too long ago he received his Masters degree too. He used to work the 3rd watch in a rough area, but now works days for which we all feel relief, although with some of the stories he shares with us, officers are not much safer during the day either! M. has a beautiful family that he loves very much. He is a great son, husband, and father of whom we are very very proud.

When I think of words to describe M. they would be: loyal, strong, protective, insightful, intelligent ~ always thinking and learning with a quick sense of humor. He is a great story teller ~ he could be a writer quite easily I think. He is faithful, faith-filled, and very loving with a deep sense of fairness and compassion.

Do I sound a bit over the top? What do you expect! I am his mother, and I absolutely adore him. How blessed we are to have M. in our lives.

Happy Birthday, son. May all your dreams come true.

Our Miniature Resident Feathered Friend

Joel has spent quite a bit of time being a gentle observer of one of our resident feathered friends~ a hummingbird has built a nest in our locust tree...He took quite a few pictures of the nest and of mama on it and we enlarged them 8x to get what you see here. This little bird has brought Joel so much joy during his deck time.




Can you see her long beak? And look at this one where he caught her landing. Her wings go fast, but it looks like she is gliding to a landing here.
There is nothing like creation to bring balance and healing into our lives.

Saturday's Scribbles

It looks like another sunny day. It is very windy, a bit warm, and everything is sooooo green. When we lived in New Mexico we missed the green grass of the Midwest. We even missed the snow...but of course we were young then :) I like the first snowfall, and maybe the second, but after 2 months of winter I am ready for spring. I would never trade winter for the hot hot days of the south though. We would love to go back to Montana...but don't want to be that far from our kids who all live in "connecting states in the Midwest. We call Minnesota "home" even though we don't live there right now.

Joel has spent some time sitting on our back deck this past week and in doing so he discovered our resident hummingbird has made a nest in our locust tree. The nest is so very tiny, but so are hummers, and I guess a hummingbird's eggs are the size of peas. Joel has been able to use our great camera and take some photos which I hope to share tomorrow. We have wrens nesting the the wren house his brother built, too, so Joel has had a great time enjoying our feathered friends.
Speaking of friends, we have dear friends we have not seen since the day we left the Philippines in May of 1976. They retired in South Carolina and their whole family is all along the coast. H. and I met at church on the base, and became fast friends and sisters in Christ as we have always said. We talk rarely, write once in awhile, and email mostly. We stay in touch and are there for each other with prayer and encouragement when needed. They are loving and generous people and we feel blessed to have them in our lives...even from such a long distance. Some day we will see each other again...here on earth or in Heaven and then oh, what a grand time we will have!

Speaking of friends one more time, in August the small college where we met is having a reunion. We attended Golden Valley Lutheran College ~ a 2 yr. program ~ and were married soon after graduation. We made great friends there and try to stay in touch with them. In 1978 we planned the reunion, and then in the early 80's we had a gathering for all who could come at our own home. That was such fun. We would love to go this year, but both of us are too sick. Maybe next time!

We each had to fill out an informational sheet to send in for the reunion. Answering such questions as what is the worst idea you ever had? My answer: Creating a bright orange bedroom....that faced the east....need I say more? I know, I know...but it was the 70's!!! We also had to finish statements like "If I could do it over ~~ My answer: I would laugh more, worry less, play more, work less. Joel and I ended up having a lot of the same answers which is not a surprise after being married 41 years.

Yesterday Joel and I made peach pie. He has been missing something sweet, but I am not so sure this took care of that. We used rice flour, egg, water, and olive oil for the crust. Sliced fresh peaches mixed with flour, cinnamon, a bit of stevia and applesauce. It was good, but not sweet enough due to the rice flour's tendency to have a bitter taste. We are thinking of trying tapioca flour next time. Joel continues to lose weight ~ down 18-20lb. I have finally stopped gaining ~ isn't that special.

Our neighbor behind us had a mild heart attack but after two stints being implanted, he is doing fine. We never new he was sick, just like he did not know Joel was sick. The definition of neighbor has changed hasn't it. We wave at ours, but very seldom does any visiting occur except for the guy across the street who enjoys porch sitting with Joel. His wife lives and works about 3 hrs from here and he goes down to see her on the weekends. No kids, but a booming business, his wife's business, two houses, a condo on the lake for when he goes biking, and alot of time living apart. Next to him lives another man whose wife works 3 hrs away, too, while he lives here and works. They see each other as often as then can but jobs have "dictated" their present situation also. This would NOT be acceptable for me. Spending all your time making money, living apart from the one you love, and waiting for retirement to come? Right now I absolutely think it is time to stop commuting and even though Joel drives home almost every night, I am not accepting all the time we are apart as okay. I am quietly gearing up for pleading my case....for both our well-being. Life is to darn short, time is too precious.

Speaking of life, hope yours is going well and today is a day filled with sunshine ~ inside and out!

Partners In Lyme: Precious Energy

I decided that while Joel is home on medical leave I would try to get out once a week for a short drive to the park, or to look at summer gardens. Since our neighbor sprayed his yard again, we cannot have windows open or sit on the front porch so today was the day to leave the house. We drove down to the river to have our morning devotions at a quiet little park area connected to our association where we live. It took only a few minutes to get there and park under a tree, but it seemed to take all of our energy! We had our devotions, and instead of sitting back and enjoying the view, headed right back home. I crashed on the sofa for a morning rest and Joel actually headed back up to bed. That rest time is vital as our bodies as we need all the energy we can to help our bodies heal.

Energy. We soooooo take it for granted. The human race seems to go at full speed, beating up there bodies with overdoing, over stimulation, over eating...over ....over...over....and we do not realize that there comes a point where the body says, STOP. ENOUGH ALREADY! Linda Kavelin Popov calls illnesses such as CFIDS/ME, Fibromyaliga, Post Polio Syndrome, and Post Viral Syndrome as energy related diseases. Depleting our energy sets us up for illnesses to take hold of our bodies! She told a story about a cab driver she had in Vancouver. He was from India and was living there to make money for his family back in his home country. When she asked if his family was going to move to Canada, he said.."Oh no, when I go home to India it is pure peace with no worries. We still have our bills to pay, etc. but we are not too busy ~ overdone, as people are here."

Joel and I are "overdone" and now we need to play catch up with restoring our bodies vitality. Maybe energy should come with a warning label just like all our mattresses, etc......

Warning: Energy is precious, it is not bottomless, it needs to be treated with love and respect and carefully used. If you do not follow these instructions, you will be setting yourself up for chronic illness, disease, and unhappiness.

CFS, Lyme and Pre-emptive Rest

Across the board it seems that everyone in the world of CFS/ME agrees that pre-emptive rests are one of the most important tools for managing and improving the symptoms. Some people need to rest every hour...some twice a day, and others manage quite well with just one rest period. Each person needs to figure out what works best for them and stick with it.

Taking a rest does not mean laying down to read a book or watch a TV show. It means, resting with your eyes closed, and in silence so the body has a break from any visual and audio input. Those of us with CFS/ME and Lyme do not replenish our precious energy as well as those who are healthy, so taking planned rests will keep us from getting to a place where we step outside of our energy envelope.

I have been resting 2 times a day for a long time now. My body insists on laying down and napping only 2-3 hours after I wake up. Then again around 1:30-2pm I rest again often napping for a few minutes. Some days I also rest again around 5pm. After spending 30 min. on the computer or doing an activity that takes a lot of energy, I rest another 15 min. I am in bed by 10 pm and am able to fall asleep quite quickly even with 2 naps a day! If I am too wired to sleep, I listen to a meditation CD and deep breathing to relax as best I can. Needless to say, all this resting gets "old", but it is necessary for me to be able to function. Recently I have noticed a slight improvement from sticking to my schedule. Progress of any kind is a good thing!

With Joel home now all the time, I set up one important rule. Two rests a day. He did not think he would need this, but very quickly realized that he needed to nap not only 2 times a day but sometimes 3! It takes a lot of energy to heal.

In our crazy off-kilter world, we think it is a badge of honor to be fatigued. I cannot count the number of times I have said in the past, "I have Chronic Fatigue Syndrome" only to have someone say right back to me....."I must have it too! I am sooooooooooo busy and ALWAYS tired". I used to be proud of that label too. Now I watch others run in circles and I wonder how many of those who are "out there" live their lives unconsciously due to being over scheduled and overtired. I have been a member of Bruce Campbell's online CFIDS Self-Help groups for years and I don't know of anyone who has not benefited in some way from pre-emptive rests. Maybe what the whole world needs is a time of solitude and rest. It is healing not only the body, but for the soul.

One Piece of the Puzzle

There is documented research that proves that Lyme Disease can be sexually transmitted. I am going to talk briefly about this delicate subject because I think it is important to keep educating people on Lyme Disease. The information I am sharing is what I have been told by our Lyme Doctor (LLMD), or info I, myself, have read in books or articles that talk about the research that has been done on the subject.

According to our Lyme specialist, Lyme Disease can be sexually transmitted from males to females, but there is little to show it is transmitted from females to males. I am sure more research is being done on the latter, since it has already been shown that some babies are born with antibodies to Lyme due to their mothers being infected with Lyme Disease while they were pregnant. In fact, Dr. Charles Jones, LLMD, has treated thousands of children with Lyme and believes many are infected with Lyme while in the womb. It is quite sobering to think about this devastating illness being transmitted in these ways, but we must face the reality of it in order to deal with and eradicate Lyme.

In hindsight, we have wondered if I was reinfected from Joel due to my health taking a turn for
the worse about a year after he got Lyme. I was doing fairly well and able to drive, shop, and do most the work at home. Then in 2000 I started to take a turn for the worse, slowly getting more and more sick, with new symptoms appearing. Nothing seemed to help, and in 2004 I became housebound. I remember wondering if it was the stress we were under, if I had been exposed to something in a large dose which caused the MCS, or if it was because I stopped my alternative therapy 2 years earlier. Our Lyme Doctor told me she thought I could have been reinfected around the year 2000 due to the turn of events with my health. This was before Joel we knew about Joel having Lyme. Muscle testing reveals I was reinfected with Lyme and Bartonella around this time. It is a possibility that I was reinfected from Joel. We will never know 100% , and it is not important except for the standpoint of right now. Are we still able to reinfect each other? It appears to be one piece of the puzzle called Lyme.

I know of or have read about other couples where both have Lyme. First one and then the other. It would make sense that it can be transmitted since Lyme bacteria is a spirochete. Hopefully more research will be done to help stop the spread of it. And hopefully, by sharing what I know here on my blog in my small corner of the world will help someone who is dealing with this themselves and looking for information or help. Does anyone else have information that they have found to be credible on this subject? Education is power!

Words to Ponder

"Holding on to resentment is like taking poison and expecting the other person to die."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

" As smoking is to the lungs, so is resentment to the soul; even one puff of it is bad for you."

Saturday's Scribbles

It is more than a bit chilly today in our corner of the world. We slept with the windows open last night and by early morning I was snuggling under my Woolie to stay warm. A taste of fall.

I have been reading the book, "Eat, Pray, Love" by Elizabeth Gilbert. I bought it a while ago, and then wondered why...I just was not interested...but 2 days ago I picked it up and I can't put it down! Gilbert spent a whole year traveling to three different countries. She went to Italy to eat...to India to pursue devotion and find God, and to Indonesia to pursue balance in her life. Even though it would not be my desire to study with a Guru or seek out any transcendental experiences, I am very interested in meditation and prayer and visualization. She is a very good writer...you feel like you are right there experiencing everything right with her. During one of her conversations with her friend Richard at a remote Ashram in India where she spent 4 months, she is going on about how she wished she was still with her boyfriend..and she wished...and she wished. I have been there myself with wishing our circumstances were different...wishing I was well...wishing wishing. I was brought to attention with Richard's response to Gilbert. "Now that is your problem. You're wishin too much, baby. You gotta stop wearing your wishbone where your backbone needs to be!" Isn't that the truth!

Yesterday I broke out of my sanctuary! I had not left the house for 3 1/2 weeks and I needed to go for a drive. Joel and I went about 9 blocks, stopped at my sister and her hubby's and visited from the van window for a half hour. Then headed back home. Why not go inside and visit? Because the "wonderful" smells in the average home would give me a major reaction. Of course there is always the risk that someone has sprayed their yard and I will get exposed, but it is a chance I sometimes have to take. I had planned a trip to the park, but we both ran out of energy. Still, it felt good to just get out and actually visit with someone.

Walter Cronkite died yesterday at age 92. He was a man of integrity and entered our living rooms with the nightly news~ not giving his opinion ~ just the facts, letting the listeners form their own. Sadly, I am not so sure we get much unbiased, "just the facts" news anymore. Once in awhile I watch the BBC news on our PBS channel to get a different perspective. Sometimes progress is not really progress at all.

Last night Joel and I had breakfast for supper. Pancakes. Our pancakes are not the norm...rice flour, olive oil, yogurt, egg, and baking soda are the only ingredients I use. It makes quite a fluffy cake when cooked in our cast iron skillet. We can't have any kind of sweetener, so for toppings we use almond butter or peanut butter, applesauce, and fresh blueberries or strawberries. Delish!

We have a hummingbird that has nested near the house. Once in awhile it tries to get in the living room window. Wonder what it sees in here that looks worth the visit.....Every morning our resident cardinals give us a wake up call too. They are one of my favorite birds. It took me along time to connect that when I was in 3rd grade I was in "the best reading group" and so proud of that I guess. Our group was called the cardinals. Amazing how one little thing like that will affect us our whole life. We all are in need of praise and encouragement, no matter what our age.


* I just re-read what I wrote earlier today and some of my words did not convey what I was trying to say. I have corrected my scrambled thoughts. Sigh....Lyme is challenging my brain today. So I will say, again, adieu.

Partners In Lyme: A Time To Heal

Today Joel received his written report from our LLMD. In the Western Blot IgG he tested positive for bands, 23-25, 28, 30, 31, 34, 41, and 48, and his CD 57 test was low. Now we understand what she meant by his tests being the most positive she had seen in a long time. Those are a lot of bands.......well, well, well.

Seeing Joel so weak and exhausted is difficult for me. He has a lot of trouble keeping his balance. He can do very little mental activity without getting really tired and just driving the hour to work makes him feel "beat". His voice is soft and weak and he is vulnerable. I want to take care of him ignoring my own health concerns, which in the long run would mean a relapse and that would be worse for him. So we are learning the dance of being partners in Lyme.

We have spent the last couple of weeks talking about Joel's health and what is needed right now. For some reason, we have been surprised by how ill he has been on the protocol. On Tuesday evening he presented to our church council 3 proposals for him to have some time off to heal. He had already talked to our Bishop and the Bishop felt Joel should take a sabbatical, use his paid medical sick days and the rest of his vacation. This would mean nearly 4 months off and Joel felt that was too long.

Joel presented to the council 3 options that the church had, one being a 2 month sabbatical which is already written into his contract. This was his first choice. I cannot go into detail here on what was said or done, but the council chose to give Joel a 2 month paid pre-disability medical leave. So, with gratitude Joel will actually be taking 7 1/2 weeks off to regain some of his energy and hopefully get past the worst of the die-off since he is on 3 strong abx. We know that God's plan is always best and a lot of prayer went into this so we are giving thanks for the results, and the privilege to even take time off of a job. Most do not have that option.

Seeing his diagnosis in print, having to go through the process of getting time off (and what a blessing to be able to do that!!!), seeing the pre-disabilty medical leave papers, and the worsening of his symptoms have all given us a reality check. This is the real deal, and the journey, though not impossible, will not be easy. It IS possible though, and with God's help, a great LLMD, and our tendency to never give up....we will not only survive, but thrive. Between Joel's determination and my moxie...we are a good pair...partners in Lyme making progress one shaky step at a time...together.

Keeping Balance In Your Life

There is more than one kind of balance we can talk about ~ today I am speaking about the balance that has to do with walking a straight line.

Joel came home from work late last night and when he tried to turn around on the porch he almost ended up sitting on the floor. A good night's sleep seemed like the best idea to see if it was the meds or the exhaustion. This morning he had trouble walking across the room. He just could not walk a straight line nor could he manage to stand without swaying back and forth. I found myself following behind him like he was the pied piper. Hmmmm

He was on the Flagyl for only 2 full days, but definitely has symptoms that we were told to watch out for..."acting drunk". No more Flagyl for him. I put a call into the doctor's office and got him settled in a chair to rest. Later I got a hot bath with Epsom salts ready and an hour later he said he actually could tell the difference. He is still "giddy" and "silly" and a bit off kilter, but I expect it will take awhile before it all leaves his system. The LLMD has him on a new med already, and we are giving thanks for how quickly she responded to his needs. It makes us wonder if she ever has any time to herself with all the patients she must have to deal with in her office and on the phone.

Balance is what a baby needs to take his first steps, and what a 63 yr old man needs to get around too. Guess we take it for granted until it sweeps us off our feet!

A Good Laugh

Laughter...it can actually move us from the adrenaline surges and anxiety of the sympathetic nervous system into the parasympathetic nervous system, increasing our serotonin. Deep breathing will also bring you into the parasympathetic part of the autonomic nervous system, but laughter is more fun! I have one friend who says when she finds herself getting anxious or moving quickly into one of the adrenaline surges that come with CFS/ME, she uses laughter to bring things back into balance. It can often be as good for calming down the body as meditation.

What makes you laugh? For me the TV show The Golden Girls pops into my mind first. They are such characters and can be so out of line but so funny at the same time. Another show that makes me laugh is a ridiculous show on the USA channel..."Psyche". I cannot even tell you who the stars of the show are , but it makes me laugh. Funniest Home Videos is another good one to get your shoulders shaking, and I mentioned before that I like to watch the movie "Birdcage" when I am down and out. The antics of animals are another way to bring a smile to my face. I cannot leave out the many books that bring humor into our lives. One of my favorite's is titled, "Fifty Acres And A Poodle" about a couple who move from the big city to the country with their dogs.

Our grandchildren bring me joy and laughter. Recently one granddaughter told her mom she just felt like being mean. She did not know why, but it felt good to be mean sometimes. Later she put herself on "time out" because she felt like being mean, so thought she needed time out before she really WAS mean to someone! Ahhhh the honesty of a child.

Here is a picture of our youngest grandson in the tub. Now you have to admit, it made you smile right?

If you find yourself with a furrowed brow, put on a happy face.. find something fun to laugh at....like my grandson's picture, and let your body heal....one smile at a time!

Saturday's Scribbles

Ahhh, another beautiful day in the heartland of the USA. The sun is shining, the humdity has dropped to a tolerable level, and July in the midwest has all the flowers showing off. The corn is high in the fields, and the farmers markets are blessing us "city folk" with an abundance of early lettuce, a few green beans and other veggies, and homemade goodies. Joel stopped yesterday and picked up some fresh cucumbers, lettuce, and green beans. Yum!

I would love to have a garden and grow squash, green beans, tomatos, and herbs. Where we live it would be "frowned upon". We live in an "association" and even though it is called Asbury Farm they don't REALLY want you to have a farmyard. So many rules, so silly.

Joel just went out on what we call "poop patrol" ~ picking up dog do-do in the yard before the boy we hired to mow comes by. He had quite a few sticks to pick up after Friday's early morning storms. It saddens me to see him so wobbly and weak in the knees as he slowly walks around the yard. I keep telling him, he will get better. His strength will come back..I think I say it for myself as much as for him but I do believe it. God keeps assuring us of that with Isa. 40:28-31 coming up over and over again.

The havoc the H Pylori treatment raised is passing except for an unhappy liver. The yeast die off ceased to be challenging after three days...just as the NAET practitioner said.

Today is our grandson, N.'s, birthday party. He is 7 now and his dad is having a party for him at their church. Just saying that sentence gives me such joy. Our second son went through drug addiction, and then alcoholism for several years. We often worried for his well being. And then 18 mo. ago he went into a Christian treatment program. He is clean and sober, AND his faith has deepened and strengthened in such a way that Joel and I are often lifting up prayers of awesome thanksgiving. He is healthy ~ having a party for his son...in HIS church. This is big. Sadly, neither Joel or I can travel to be there to see this milestone and celebrate with little N. Sometimes life is not fair.

My husband has made a promise to me. No more roof walking. On his 63rd birthday I went into the bedroom next to mine and the screen was off the window. As I walked up to the window I saw Joel walking on the roof, bending down and cleaning junk out of the eves. Okay, this is NOT cool. I quietly asked him to please come inside...he did and then I reminded him that he has balance problems! He told me he forgot....so I made him promise right then and there to stay off of the roofs. I will work on the high ladders part later. AND this week we had the "gutter man" come and put gutter guards on the whole house so there will not be a need to clean out the gutters at 10 at night on a high ladder with a flashlight (I am not kidding!) nor to do any roof climbing.

Speaking of age, in my 20's I felt like I had so much to learn....by my late 30's and 40's I thought I knew it all.....in my 50's I felt pretty content with what I knew! Now as I begin my 60's I am grateful to still be here, eager to soak up all the learning the world has to offer, and looking foward to Joel's retirement. Back to feeling like I have so much to learn and so little time.

Thinking about the "so much and so little idea"...that is how I have felt about books my whole life. So many books to read...so little time to read them all! I am so thankful I enjoy reading. As a child I like Trixie Belden and Nancy Drew mysteries....and of course the Betsy-Tacy books.As an adult I still enjoy mysteries and can get hooked on self help books. Now I am very choosy about the non fiction I read. I like missionary stories, books about helping others, and those that help me learn to accept life and be content. I used to keep all my books in pristine condition until I realized what I really wanted to do was underline and circle, and fold down pages of what I felt was important to remember. Joel uses markers to color code what he wants to remember in his books. A good old fashioned pencil is my favorite tool. It does help when you want to go back and find something. I am usually reading 2-3 at a time. A fiction book, and one or two nonfiction. Books are my "vice" ~ not a bad one to have. "Some of my best friends are books".

Off to eat lunch. A fresh salad with olive oil dressing and rice pasta with a bit of ground turkey and broccli in it. Good nourishment for my body to go along with a good book that nourishes my soul.

I am going to post a photo of our little porch Joel built, that gives us such pleasure. It is nice enough to have windows open and I can hear the chimes when the wind moves them. Joel spent alot of time out their this morning. It is a good place to be.

Yeast Gone Wild Part II

When I wrote the post about the yeast gone wild, I did not go into what else I was doing to fight yeast. Brain fog... So, I wanted to add a few other bits of info.

First of all I did not know that a NAET treatment would kill off yeast the way it has. I think I will be having her also treat the Lyme and coinfections more too. NAET will be part of my healing plan.

I also use probiotics on a daily basis. Actually I take double the recommended dose to counteract the antibiotics being constantly in my body. I also use two different herbal yeast remedies...Phytostan and Yeast Formula. I used to eat A LOT of yogurt, but I can no longer tolerate it. I ate organic yogurt with 10 different probiotics in it. Organic Keifer is good too!
Some people take diflucan or nystatin, both of which my body rejected.

Jozephine mentioned to me the yeast free diet and that is very important too. Our LLMD says 2 serviings of fruit a day...1/2 banana.....1 small apple, etc. NO sugars of any kind and no simple carbs which turn into sugar in your body and feed the yeast. As a warning, our LLMD told Joel she had one man who would not follow the yeast free diet and ended up unable to work for 18 mo. due to systemic yeast throughout his body. It is serious stuff.

I am already feeling less "yeasty" so that is good. Just like the musical, "Oz" I am "movin' on down .....movin' on down the road" believing that yeast is no longer wild, but being tamed as I write.

Yeast Gone Wild

The two years of antibiotics caused me to have a yeast problem in my intestines, sinuses, other areas, and on my skin some, even though I was taking probiotics in large doses and an herbal remedy. Taking the large amounts meds I needed for H Pylori treatment ramped up the yeast. After the treatment was over I noticed alot of thrush in my mouth and other symptoms of yeast gone wild. My NAET practitioner treated me for yeast and bam...all I can say is bam! I feel like I have a bad case of flu with an added sinus infection ~ and I am hoping it ends soon. How grateful I am for our practitioner. She keeps me functioning! The good news is the yeast is dying off. From what I have read, yeast die off is as bad at times as Lyme die off. Having a systemic yeast problem can be debilitating and must be avoided. If it does happen, it must be eliminated. I am suspicious that some of my ongoing pain and other symptoms were related to the yeast and not the Lyme..hmmm.

I am doing research on the Cowden and Zhang treatment plans for Lyme using herbs. I really don't want to keep damaging my body anymore. I see endless years ahead for this and have decided to do my own research and take over more control of how I live the rest of my life.
If I truly have to live with Lyme, CFS, and MCS for the rest of my days, I am going to be making some of the choices in how I manage it all, doing what is best for me to have some quality of life.

For today, "yeast gone wild" is going down!

Being A Gentle Observer

Last week I wrote about how tired I was of seeing all the coverage on Michael Jackson's untimely death. That being said, I watched the memorial service of Michael Jackson today. I taped the last half hour so I could get in my rest time and finished watching it when I woke up.
I was mostly curious at first, and then became drawn in to what those who really knew him were saying about him. Looking past the altered image of his face, strange behaviors, alleged abuse of children, and what looks to be a prescription drug problem, there was a real person who had real feelings and who was a genius in his field of music. Looking at him through other people eyes gave me insights into what I had missed with my critical spirit getting in the way of being a gentle observer. His memorial was both a service of worship and a celebration of his life. May God be with His children, family, and friends.

LOL

I was going back and rereading a few posts and looking at comments when I came across what I wrote about Flagyl possibly making someone act drunk and that I did not drink.... and that I had to look up info on that...and that staggering was one of the symptoms.

I laughed right out loud at HOW I had written that ~ like I did not know how a drunk person would act. Drinking is not part of my life, but I do know how those who drink too much act..
SIGH...I meant I looked up what Flagyl symptoms would be for "acting drunk"....my brain fog was in high gear...but it gave me a good laugh.

It is nice to have my brain back to "normal" which of course involves Lyme and brain fog, but is normal for me! Ha!

Just To Be

To be alive

is

Holy

Just to be

is a

blessing

Martin Buber

Jewish Philosopher

Saturday's Scribbles

It's Saturday morning and the sun is hiding today. Rain has quenched the thirst of our flowers and cleared the air some. The geranium Joel bought me for Mother's Day has FINALLY bloomed and is making up for lost time. Beautiful to behold! The resident wren family is gracing us with a song, and the gentle breeze keeps things from getting too stuffy.
It is the 4th of July here in the good ol' USA! Joel just came upstairs wearing his "flag shirt" that our oldest son and family gave him a few years back. Last night we watched the fireworks from our living room window. They are set off near the High School just a few blocks from us, and we are able to watch from the window or backyard. I must confess we were both so tired, we debated whether to stay up or not but decided the booms would keep us awake, so we pulled our chairs up and enjoyed the show!

We are pretty patriotic people. Eight years in the Air Force will do that to you. I always remember how respectful the military was of the flag in the 70's. If you went to a movie on the base, before it started the flag would come up on the screen and the whole theater would quickly stand at attention while the Star Spangled Banner was played. If you were driving or walking on the base when it was time for the flag to be lowered....everything stopped..you would see car doors opened and soldiers standing at attention until the flag went down. This often moved me to tears. I really liked most everything about the military life, but Joel did not feel called to the military, so he opted for an early out to go to seminary and the rest is a beautiful history.

We spend most actual holidays alone together except for Thanksgiving every other year, and at times it is challenging for us as we watch families gather and have a good time. Envy is not something I usually deal with, but I find it coming up once in awhile when I see my sister getting together with her two children and their families several times a year AND for nearly every holiday. They go to their daughters for a week twice a year and their son and family come up for a few days each time too. They are close, enjoy each other and get along very well. I confess, I feel sad at times that Joel and I cannot enjoy more family gatherings. Our fellow blogger, Jozephine, would remind me of her truth-speaking quote....."compare and despair"! It has helped me more than once to see where my thoughts were heading! When I grew up family was soooooo important. We came together, put aside any differences, and were kind and loving to each other. Sometimes it was an effort because we all had different ideas on parenting, etc. but the key was putting love before expectations and our own agenda. We had FUN! GREAT FUN. They all still get together and I hope to be able to do that one day again when I am better. I miss the companionship of my family and I now know what a blessing it was to be able to enjoy each other so much.

Joel and I rented a movie to watch today. "Last Chance Harvey". It sounds good...but of course you can't go by what the movie critics put out there. One of my top favorite movies that I have watched several times is "Under The Tuscan Sun". I really should reflect on why I love that movie so much! My favorite for years was "Out of Africa"....for obvious reasons. I have laughed my head off at the move, "Birdcage" many times. Nathan Lane is a hoot in that movie. A movie I used to watch over and over years ago was 70's movie called "The Wilderness Family". Silly now, but with my desire to live in Africa or Alaska...it, too, was an obvious choice for me. I must be honest and add one more favorite of the 80's....the movie "Dirty Dancing" with Patrick Swayze. I used to dance every day of my life, and the dancing in that movie was great!

Speaking of dancing, it is one thing I miss so much about my mom. She never came to visit that we did not do the two-step a few times around the house. When she was in a wheelchair at one of our kids wedding, we just danced with her from there...and I have danced in a sitting position a few times myself. My mom was a great dancer...a great musician in her day. She was one of those smooth dancers who only move from the waist down....gliding across the floor.

Guess I will go glide my way out to the kitchen for lunch. For those who celebrate the 4th, have a great day in the "Land of the Free". Among other places, it is a good place to be.

First Do No Harm

Clarithromycin (Biaxin) 2 weeks at 500 mg. Flagyl: 5 days at 1,000mg.


insomnia

nightmares when I did sleep

extreme anxiety

intense neuropathy

unable to rest during day

weird brain feelings

metallic taste in mouth

bone pain

muscle cramps

difficulty swallowing at times

diarrhea

weakness ~ hard to even hold a glass of water

unable to walk straight

Some symptoms die off, some side effects. All of them awful.

I have never felt so toxic in my life. First do no harm keeps echoing in my head. How can this be helpful for anyone? I have stopped the treatment for H pylori. Hopefully it was enough.
It was enough for me.