posted
I've been holding my own for a while. Not doing well at all, but at least my symptoms have been consistent.
Suddenly yesterday I absolutely crashed. Woke up from my nap on the couch in so much pain I had to weakly call my husband for help. I couldn't turn myself over or sit up to take my pills. I had a killer headache. I spent the whole day on the couch and then stumbled up to bed. I really thought it would be better today.
Well, no such luck. My headache is still going strong and I can barely move. Could it be because of the rain storm that started yesterday morning and is sticking around for another day or two? Or is it just the hour that I spent with the kids at Chuck E. Cheese two days ago kicking my butt? I've "overdone it" in the past and not suffered for it afterward like this.
Is an increase in misery and suffering common when the weather gets bad?
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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posted
Did you eat anything there? I would likely be in the hospital if I ate wheat crust.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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posted
We call Chuck E Cheese "upchuck Cheese" because the two times we've been there in our lives with the kids we all got sick.
Germs everywhere, kids with dirty hands all over the place. Once we went just before Christmas and everyone was sick Christmas Day.
Will never do that again, but all that noise and lights would drive me crazy. I think you did too much. This rainy weather also gives me all kinds of sinus h'a as well.
Hope you revive soon.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
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- Noise, alone, is very exhausting. So are flashes of light and swift bursts of motion.
Are you gluten-free? If not, it's very important and that will help you feel better.
Same with avoiding aspartame and other artificial sweeteners and MSG (in most fast foods). Google for all the names of both aspartame and MSG. Those lists will shock you.
Also, the meat all fast foods use has additives and the oil from the fries can be caustic to our heart and to our brain in a matter of hours. The cheese they use is likely not real, either.
I think it was the combination of whatever you ate - and the absolutely intense sensory overload from - yes - just one hour that you spent with the kids at Chuck E. Cheese. Such events can result in near paralytic exhaustion where you can't even roll over in bed. Oh, yes.
It may take a full week or two get over that.
** Be sure your liver & adrenal support - magnesium - and fish oil - are all in place. **
I would not plan any outing for another couple of weeks. Actually, until you are nearly well, I would stay out of fast food restaurants all together - and also stay out of large department stores -- the sensory effects are basically a huge series of assaults, literally like bombs that can damage your body.
This is VERY Common with lyme, by the way. VERY common.
If you feel stronger sooner, still go for more sedate events in natural settings.
It will take awhile for your body to be able to handle what your brain sees a artificial excitement - it's a strong drug, indeed. From my experience with such, my guess is that by the holidays you may be able to handle some calmer events but will still have to pace yourself very carefully.
Give yourself some time. This will get better as long as you are treating lyme (and coinfections) and support the liver, adrenals and brain. Good luck.
=========================
Not just "when to suspect" as for diagnostics, but to see that your symptoms are just par for the course with an infection of the brain such as lyme: --------------------------------
. . . Attempts to indulge avocational or vocational pursuits is frequently interdicted by either the languor of Lyme or by encephalopathy. . . .
. . . impairment of concentration, inattention, easy confusion or disorientation when attempting intellectual tasks. . . .
. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . .
. . . Incidentally, hyperaccusis (sound sensitivity) can be a feature of VII neuritis. . . .
. . . Eye related problems in LD are commonplace . . . .
. . . disorganization, an inability to follow a train of thought . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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posted
- ADRENAL LINKS: -----------------
This book is specific to lyme and other chronic stealth infections. The author discusses the endocrine connection and effects of STRESS on a person with such infections. You can read customer reviews and look inside the book at this link to its page at Amazon.
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris and Per Marin, MD, PhD
==================
Remember that lyme really messes up the HPA axis (Hypothalamus/pituitary/adrenal network). The pituitary has much to do with weight/growth. Mess up any part of the endocrine system and other parts suffer, too.
Curcumin Prevents Some Stress-Related Changes (By CP Staff)
Excerpts:
A recently published study investigated the effects of curcumin, a constituent of the botanical turmeric, on changes in cognition and memory caused by stress. . . .
. . . In this new study, researchers investigated the effect of curcumin supplementation on stress-induced learning defects in mice. . . .
. . . In addition, curcumin reversed the stress-induced increase in the levels of serum corticosterone, the primary hormone secreted during the stress response. . . .
. . . The researchers concluded, ``Thus, curcumin may be an effective therapeutic for learning and memory disturbances as was seen within these stress models, and
its neuroprotective effect was mediated in part by normalizing the corticosterone response, resulting in down-regulating of the phosphorylated calcium/calmodulin kinase II and glutamate receptor levels.''
The Potbelly Syndrome: How Common Germs Cause Obesity, Diabetes, And Heart Disease (Paperback) - 2005
by Russell Farris (Author), Per Marin (Author)
Much about stress reactions here. - you can read customer reviews at the link. Attention is given to lyme and other chronic stealth infections however, it does not go into details about solutions.
===========================
This is not a lyme book.
This book has only one reference to lyme (in the historical use of sarsarparilla for another spirochetal infection). However, it is a vital first book to read - or a reference - for anyone interested in understanding nutritional methods.
Search for Ashwagandha; Cordyceps; Siberian Ginseng in this book:
Graciously, much of this book is on line. It can also be purchased from this site or through Amazon where you can look inside the book and see many customer reviews.
The Rhodiola Revolution byt Richard P. Brown, MD and Patricia L. Gerbarg, MD, et.al.
See this at Amazon.
======================
If help beyond supplements is needed, sometimes LLMDs will prescribe LOW DOSE CORTEF (Hydrocortisone).
While steroids are dangerous with lyme, the low-dose Cortef is more like the body should be producing, but can't and lyme patients who need it generally do very well with it. A few may not be able to handle it.
Usually, the adrenal supplements are employed first.
For many good past LymeNet Threads, you can search here: -------------------------------
* Magnesium: The Underappreciated Mineral of Life Part II
-----------
Taking magnesium with B-6 helps it get into our cells better. And B-6 is a calming vitamin, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Reactions such as what you experienced could have some connection to food dye.
DYES are just some of the commonly used toxic petrochemicals in most fast foods - and also in convenience "foods" in the supermarket: --------------------
The Center for Science in the Public Interest (CSPI) says food dyes pose a number of risks to the American public and is calling on the Food and Drug Administration (FDA) to ban three of the most commonly used dyes: Red 40, Yellow 5 and Yellow 6.
A new CSPI report says those dyes contain known carcinogens and contaminants that unnecessarily increase the risks of cancer, hyperactivity in children and allergic reactions.
"These synthetic chemicals do absolutely nothing to improve the nutritional quality or safety of foods, but trigger behavior problems in children and, possibly, cancer in anybody," said CSPI executive director Michael Jacobson, co-author of the report.
"The Food and Drug Administration should ban dyes, which would force industry to color foods with real food ingredients, not toxic petrochemicals." . . .
. . . According to the report, tests done on lab animals found contaminants that raised health concerns about several of the nine dyes currently approved for market. The approved dyes are Blue 1 & 2, Citrus Red 2, Green 3, Orange B, Red 3 & 40 and Yellow 5 & 6.
And every year, about 15 million pounds of these dyes wind up in our food, with alot of it ending up in things like candy, fruit drinks and cereals.
. . . Britain in 2008 . . . . For example, CSPI says McDonald's Strawberry Sundaes get their color from fresh strawberries. The group says in the United States the color comes from Red dye 40.
CSPI say in the UK, Fanta orange soda coloring comes from pumpkins and carrot extract. Here, it says the color comes from Red 40 and Yellow 6 dye. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Thanks for all of the responses. I suppose I should concede defeat to the almighty Casa de Queso.
It has become increasingly difficult for me to do things outside of the house. Grocery shopping, a trip to the library, visiting family, etc. Any of those things, with two small kids, require so much planning and preparation (diapers, wipes, changes of clothes, sippy cups, snacks) that I am exhausted before we even pull out of the driveway!
I know that I will benefit from my daughter starting kindergarten next week. I really need to do away with the craziness of summertime, and get The family on a good schedule. Plan my trips to the store on a weekly or biweekly basis instead of just going out whenever we run out of something. Write out my dinner menu for the whole week. Any other ideas of things I can "schedule" to make life easier?
I think it's going to be very, very hard coming to grips with the fact that I can't do as much as I used to. Especially with two kids and wanting to be able to do normal kid stuff with them like go to the playground, the park, the library, or just playing with them in the backyard. Sigh. I think I need to blog about these feelings later tonight when the kiddos are in bed.
Thanks again for the advice. Time to try to drag myself up the stairs to put the baby down for his nap.
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Keebler
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- Time and alertness with your kids trumps energy output of grocery / household shopping.
Can you establish direct relationships with local farmers? Go only to smaller stores?
Can you get your food delivered by the store, friends or volunteers? As long you have to go into a grocery store, that will impair healing - and rob you of intimate time with your kids.
Even one minute of exposure to a rough sensory ride poisons and robs the body - from the adrenal chemical stress. Even ONE minute can do that as it's like a light switch that triggers a chain reaction.
One trip to the store can take your energy requirements for a whole week and then your body has a harder time healing.
It's the light, the sounds, the motion, the toxic brain hit of the scented products, the brain confusion and decision making, etc. It's all a huge toll. With "sensory overload" there's no free ride in any artificial environment.
Even in your home, you might want to go scent-free --- and check your light bulbs. I never turn on the overhead fluorescent lights in my kitchen. I have lamps on the counter & one floor lamp - with only conventional incandescent bulbs.
I would like to save the planet and my electrical bill, but my brain has to have the regular light bulbs where ever I am.
posted
Interesting about the light bulbs. I never thought about it, but for some reason I have never, ever liked fluorescent bulbs. We only use regular table or floor lamps with regular light bulbs.
I always thought it was just my preference for the warmer lighting, but now I wonder if it was my body telling me the fluorescents are no good for me... Hmm. Thanks for sharing! I learned something new today!
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Keebler
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posted
- Also keep this in mind: the inner ear (vestibular system) is usually affected by lyme (or by any of the tick-borne or stealth infections). This list explains a lot about how much stress that causes:
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
=========================
Rather than focus on what you can't do right now - or environments where you can't go --- remember that there are plenty of things you can still do with your kids and many good environments where you can be more in tune with natural rhythms. That's better for everyone, really.
What if we were living in a time before ANY stores or restaurants were built - or even before electricity had been developed?
You'd still have plenty of opportunity to relate to your kids and enjoy lots about living. Before our modern frenzied world, people sang, told stories, drew or painted, danced.
People went to bed when the sun did. Not a bad thing, really. And, in the winter, as long as the candle does not flicker (a short wick is the key), I enjoy reading by candle light at night. It's really amazing. My body does far better with steady candle light than it does with artificial light.
I also rely on covered night lights in my kitchen and bathroom, even living room, in the evening. It's amazing how much light those tiny 7 watt bulbs provide in either a night light or an "accent" lamp. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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cactus
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posted
Running with Keebler's practical advice here... I too had littles while in Lyme treatment. There is a lot to be said for practical tips on managing.
(I had similar issues, and Chuck E. Cheese could - and did - land me in bed for a week at a time.)
Here are some random thoughts about things that saved my energy so I'd have it for the kids:
Paper plates. Yep, bad for the environment, I know. But it was one less thing to wash/put away. Savings on energy was priceless.
All of my houseplants found new homes.
Online grocery shopping. Depending on which stores you have nearby - you go online, pick out what you want, they shop for it, pack it in bags... you drive through a little pick up line to pay while they load it in your car. Bingo! For someone who can't handle the lights, the sounds, the stimulation - heavenly.
Hire cleaning help if you can, and don't stress about getting "maid ready" ... you are not going for perfection, you are going for livable.
Outdoor playgrounds with kids are less stimulating, less upsetting and require less recovery time (depending on the temp - go early or late if it's too hot).
Quiet projects, lots of them. Audio books for kids. Coloring. Play doh.
Maybe some of those ideas will spark some more ideas.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
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- Kids also love Yoga - I just typed in "Yoga for kids" and many links popped up. And that is overload.
I was hoping for the one best one as I'm too tired to sort it all out. But, your kids may enjoy getting into a different kind of routine at various times of the day. Yoga can be so much fun that they will forget all about the TV.
The game "Twister" is sort of like an energetic yoga, really. Although your youngest is likely too little, the spinning dial and bright colored circles may still delight your older child for self-contained fun, even alone.
I wish that my parents had thought of alternate evening entertainment or routines when I was in my youth. I often went to bed after seeing "The Untouchables" and I had nightmares about gangsters (even as a teenager). Even "Gunsmoke" had violence that affected my sleep habits. Even TV and movie promos/commercials today are so horrifying to anyone's senses.
I'd really like to go back to the "Dean Martin Comedy Hour" and "Carol Burnet Variety Show" --- still excellent and on video. Good talent stands the test of time.
But, more than anything on the tube, your kids may like to sing. There's a lot to be said for "Kumbaya" in a song circle as evening ritual. Lots of children's lullabies are on CD these days. Some of my favorite night time listening. Most of these are not at all the silly nursery rhymes of the past but intricate, interesting and sophisticated compositions from around the world.
You might find groups in your area where parents have organized the opposite atmosphere of Chuck E. Cheese, but one that still provides a magical and fun world for kids. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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cactus
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Keebler, good thought -
YogaKids makes some great videos. If your kiddos are the right age, the alphabet one is fun!
I thought of something else... My husband could always look at me and see when I needed to put in the earplugs.
I felt like a bad mommy - but better to be an okay mommy wearing earplugs than a worn-out, not-okay mommy in bed.
If your kiddos are naturally loud (like mine) you might consider this option - you can still hear *enough* it just takes the edge off.
Also - a mini-trampoline is great for kiddos to burn some excess energy.
Local teens make great mother's helpers, and can give you a break so you take a nap and the kids see a different face.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Keebler
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- I searched "opposite of Chuck E. Cheese" - one interesting link about KINDERCITY, which seems to be somewhere in Scandinavia or, possibly, in Germany but there may be similar places near you:
. . . We have a fabulous place nearby which offers a fun learning environment for kids from ages two to twelve . . . It's a child paradise, but not in an inane, chaotic, loud way - in other words, it's the opposite of Chuck E. Cheese . . . .
==================
Okay, so I can only interpret the photos but it looks like fun. Reminds me a bit a a place called THE NATURE STORE I used to see at some malls (but I've not been to a mall in over a dozen years):
posted
Oh wow, you all went above and beyond! I love the thought of yoga, and I know my 5 year old will too!
And as for tv, it is on for a part of the day, mostly in the morning when I have trouble getting myself going. But I only allow PBS or certain shows on Disney,
One favorite thing we discovered recently is the music channels on our tv. There is everything from swing jazz, to toddler music, salsa and oldies rock 'n roll. As a musician myself, I love being able to expose my kids to different styles of music without having to buy a lot of CDs or figure out how to buy and download music to an iPod or whatever the kids use these days.
Thanks so much for the fantastic suggestions! I'm already feeling a little better about being homebound. Hugs to you all!!!
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- You may also enjoy this web "radio" site. Wish I could get in on the radio. I can't listen to the radio (except classical, sometimes) due to percussion. Folk Alley may have percussion in the right degree, but a song is never driven by heavy pounding. A lot of acoustic offerings of vibrant and current musicians:
posted
Re: food and avoiding grocery stores, I just discovered a local chef in my area who does food delivery twice a week. She has a low carb option, and makes everything fresh, some of it organic.
I'm so happy I found a way to feed myself proper food without planning, going to the grocery, cooking, shopping, or washing dishes (which I either did badly or not at all up until now).
I also discovered that we have a local grocery delivery service that will get things from several local stores and bring them all to your house at once, saving me several different shopping trips.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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I'm sorry you are going through this mamabear, but keebler is right that anything you can do to not expend your energy in extraneous activities, and save it for you and your children, is SO important. It's a change of mindset, but you can do it!
Even if you weren't going through this current crash from the Chuck-myster, it sounds like your symptoms are getting to a place where you need to be kind and easy with yourself. Conserve your energy for what really matters!
These are all excellent suggestions. One thing I will add is that I've taken to buying non-perishable grocery items from Amazon.com. They carry most of those products in cases that are cheaper than the store (I like to support our local stores, but right now, conserving energy is more important).
You can also save 15% on most of their products if you set up a regular delivery of an item you use frequently. It's automatic, and you can cancel anytime. Shipping is free on most items. (I sound like salesperson, but honest, I just think it's helpful for us.)
We get things like canned beans, canned tomatoes, toilet paper, etc. I figure out how long it takes us to go through a case, and set up the automatic shipping.
Anything you can think of that you use a lot of, that is non-perishable. Saves one step at the grocery store when you are there.
Once a month I do a mega shopping day with my husband at our local co-op, and get as many things as I can for the month that day (it's on their 10% off day). That is basically my one day out of the house all month, other than doctors.
Getting a chest freezer and having a lot of frozen things has helped with that a lot.
For me, this narrows our list down to 2-4 things I ask my husband to get us from the store once a week. I make him a list and he picks them up on his way home from work.
Good luck mamabear. Being a mother I think makes this more complicated, but I think it's time to sit down and think of the ways you can make this easier on yourself.
It's really not selfish -- it's necessary. If you kill yourself with all these trips and can't take care of yourself or spend the time you want with your kids, it's not worth it.
Sending you a hug.
Posts: 232 | From Oregon | Registered: May 2010
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