posted
I know: because you go sky diving so often! And if you forget to drop in for lunch somewhere, that could make for extra fatigue.
Posts: 13171 | From San Francisco | Registered: May 2006
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Lymeorsomething
Frequent Contributor (1K+ posts)
Member # 16359
posted
If we had the answer to that, it would take care of a lot of our problems.
It's very complex with these infections. I have no pain so it's not that.
It could be the chronic inflammatory process, the chronic drain of infection, disruption of the HPTA...the answer is elusive.
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Try getting a sleep study done (gotta see a sleep specialist, type of doctor, to order it). You may have apnea, which would mean you aren't getting good quality sleep. Do not think you need to be overweight either to have apnea...which is what most doctors seem to assume.
Posts: 4590 | From Midwest | Registered: Jun 2008
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I wouldn't waste money on a sleep study.
If you were sleeping fine pre-Lyme... then it's simple... treat Lyme and co-infections and get better.
I think too many of us waste a lot of money on all these special tests to check for this or that...
When the whole time it was Lyme & Co causing EVERYTHING.
jmo, not trying to flame
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I agree with canefan. My extreme tiredness has nothing to do with sleep.
Some weeks I sleep great, other weeks I sleep horribly. It's the nature of the beast. (Pre lyme I slept great every night.)
For me the tiredness is there no matter how I sleep. I've found it to have 3 levels for me.
First level is zero energy. Second is all energy is being sucked out of me, so I'm in the negative numbers. Third level is aching, throbbing tiredness like a bad flu.
I wonder if each level belongs to a different infections (Bb,Bart,Babs).
But I have had days (just a few) with virtually no symptoms and those days I also had energy - almost forgot what it was like!
So my answer to the question would be, the tiredness is a symptom caused by the toxins given off by this nasty bacteria. It will resolve with treatment like our other symptoms.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For most lyme patients, sleep is vital, of course, but is simply unrefreshing. That is a hallmark of this disease. Unrefreshing sleep - or sleep that does not refresh for long enough.
Normal blood work is good, of course, but it is not going to show a lot. Even for the liver, most tests cannot capture all we need to know about function, or dysfunction. And, yet, there are not tests that will show everything. Much has to do with a brilliant doctor's skill and knowing what to look for, connecting patterns from his experience.
I cannot imagine a LLMD telling you he did not know why you are so tired.
Are you sure this is an ILADS-educated LLMD? Does not sound like it.
Deep, profound, bone-crushing and unrelenting fatigue is one of the main symptoms that usually persists until nearly recovered. EVERY LLMD KNOWS THAT.
There are some specific reasons - many.
Neuro Lyme and other tick-borne infections often cause a Chronic Encephalopathy / Encephalomyelitis (brain swelling, irritation). In the U.K. and Canada, Chronic Fatigue Syndrome is called Myalgic Encephalomyelitis.
Adrenal exhaustion & other endocrine malfunction
Mitochrondrial damage and dysfunction
Cardiac involvment
Liver damage and dysfunction resulting in toxicity - &/or kidney stress
INFECTION causes fatigue. Lyme surpasses even a long, very bad flu. People are tired with the flu. Cytokine levels are shot to the moon with inflammation, etc. More so with lyme - for as long as a person battles the infection - and is trying to repair multi-system damage.
Vestibular dysfunction (inner ear/balance) - and that is exhausting.
All this - and more - to explain fatigue: -----------------------
Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS -
[ 08-07-2010, 12:56 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You probably have already cut out all processed foods. A gluten-free diet can also be a huge help to reduce fatigue and pain. More self-care details below.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
========================
It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.
[ 08-07-2010, 01:16 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I also think you need to find a new LLMD. If this one does not know why you are so tired, he's not going to be able to help you.
See, I can go on and on with things to explain &/or further explore to help. He should be able to do so. List here would just be the tip of the iceberg. You need a LLMD who is expert at all aspects of lyme + co, and that includes the fatigue issues.
However - a lot depends on his tone of voice and demeanor. If he says "do not know" in a pensive manner, with intent to figure it out - that is one thing.
If he had said, "can't always pinpoint the exact cause as this is multi-symptom, multi-organ involvement - very common and should improve with treatment and support" - and then suggests certain support measures . . . well, then, maybe.
But if he just dropped it and really had no clue, and is not going to pursue this, I'd be dropping him.
=========================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
posted
If not Lyme, then BABESIA. Causes extreme fatigue.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may need more protein. Protein gives our muscles the building blocks to get stronger. Protein helps our livers to make more glutathione, necessary to clear out toxins.
And, although you may need more protein, vegetables need to still be the mainstay of every meal - even breakfast. Leafy Greens are very helpful for energy. All the colors you can find - the antioxidants are needed to help with energy, too.
THE REQUIREMENTS OF PROTEIN & AMINO ACID DURING ACUTE & CHRONIC INFECTION . . . - 20 pages
Anura V. Kurpad - Institute of Population Health & Clinical Research, Bangalore, India 129. Indian J Med Res 124, August 2006, pp 129-148.
Excerpt:
" . . . In general, the amount of EXTRA protein that would appear to be needed is of the order of 20-25 per cent of the recommended intake, for most infections. . . ."
- Full article at link (or google the title if it does not go through).
==========================
There are some very good non-gluten whole (complex) grains that have such great mineral and protein content that they can work very well for lyme patients, in the right proportion and with vegetables, proteins and good fats.
Here are some good cookbooks & sites - adaptations can be easily made with these. You might consider growing kitchen herbs so you have fresh rosemary, basil, fennel, etc. at your fingertips. --------------------
CHRISTINA COOKS - Natural health advocate/ chef, Christina Pirello offers her comprehensive guide to living the well life.
Vegan, with a Mediterranean flair. Organic.
She was dx with terminal leukemia in her mid-twenties. Doctors said there was nothing more they could do. Among other things, she learned about complementary medicine and she learned how to cook whole foods. She recovered her health and is now a chef and professor of culinary arts.
She has program on the PBS network "Create" a couple times week. Check your PBS schedule.
To adapt: in the rare dishes where she uses wheat flour, it can just be left out for a fruit medley, etc. Brown Rice Pasta can be substituted (Tinkyada or Trader Joe's). Quinoa and the dark rices can also be used.
But she focuses mostly on very filling vegetable dishes and garden herbs.
Regarding her use of brown rice syrup, just leave it out and add a touch of stevia at the end.
From Nina Simonds, the best-selling authority on Asian cooking, comes a ground-breaking cookbook based on the Asian philosophy of food as health-giving. The 200 delectable recipes she offers you not only taste superb but also have specific healing . . . .
. . . With an emphasis on the health-giving properties of herbs and spices, this book gives the latest scientific research as well as references to their tonic properties according to Traditional Chinese Medicine and Ayurveda, the traditional Indian philosophy of medicine. . . .
THE CURE IS IN THE KITCHEN, by Sherry A. Rogers M.D., is the first book to ever spell out in detail what all those people ate day to day who cleared their incurable diseases . . .
FROM CURRIES TO KEBABS - RECIPES FROM THE INDIAN SPICE TRAIL - by: Jaffrey, Madhur
==========================
Also look for MOOSEWOOD Cookbooks and THE ENCHANTED BROCCOLI FOREST
==========================
MEDITERRANEAN DIET (minus the wheat and the wine) is also good. It's many vegetable based, with delicious herbs in the meat dishes. Quinoa, dark rices - and unsweetened pomegranate juice can be substituted.
Look up Black Forbidden Chinese Rice & the Red Bhutanese Rice. The nutritional content is excellent and these will help fill and fortify you, even in moderation, along with lots of vegetables.
Red Quinoa Recipes -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Keebler, you are amazingly awesome!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Oh, shucks. It's nice if all that helps but, it's just common - and basic - knowledge, really, for anyone who knows anything about lyme. It took me years to figure out what all clobbered me. Just sharing. And that is just a glimpse of this intricate mix.
Others can take it from there. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
As tutu said, babesia is a likely cause of severe fatigue. It affects red blood cells which carry oxygen to the body. Affects similar to anemia. Babesia also likes iron and low iron may also cause fatigue because it is another cause of anemia.
Lyme affects our body's ability to make atp (energy).
AND like others have said, there are many reasons that one could be fatigued.
canefan wrote: I wouldn't waste money on a sleep study. If you were sleeping fine pre-Lyme... then it's simple... treat Lyme and co-infections and get better.
YIKES!!! It is not uncommon for lyme patients to develop sleep apnea. You can literally die from untreated sleep apena not to mention inadvertantly kill others. Your chance of having a stroke is 400% higher with untreated sleep apnea. You can develop insulin resistance (diabetes) because of untreated sleep apenea. It is not uncommon to fall asleep at the wheel of the car risking killing yourself and others. Untreated sleep apnea causes obesity, fluid retention, irritability, brain fog, terrible fatigue etc. etc. etc...
BIG mistake to ignore it. Many of us gain weight, have swollen throats, our muscles are affected causing difficulty with the muscles that hold our throat open at night, all of which may cause sleep apnea.
Anyone who thinks a sleep study is not necessary if sleep apnea is suspected even a little is wrong. Lyme treatment won't help you if you die from sleep apnea.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
To those who say, "I sleep fine."
You actually have NO way of knowing without getting a sleep study done. You can look asleep and feel asleep, but until you get the electrodes hooked up to you while you're sleeping, you have NO CLUE whether or not you are getting into all the stages of sleep. There is no other way to know what stage someone is in by looking at them, and you, the sleeping person, certainly don't know.
For example, I sleep like a log, don't snore, don't wake up, am out for 12 hours, don't wake up with noises, etc.....but my sleep is all messed up, with regards to going through the proper stages in the right amount of time, etc.
I haven't started treating apnea yet so I don't know if it will help my fatigue, but many people find it life-changing.
And yes, I was completely healthy before Lyme. Definitely have Lyme exposure. So I am not saying I don't have Lyme.
Posts: 4590 | From Midwest | Registered: Jun 2008
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Wow, Terry, I had no idea. Now you've got me thinking...
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
I have had Lyme and Babesia for many many years. Babesia will really make you feel ....the word "tired" doesn't do it justice. Things like picking up the phone, sitting through dinner, etc. become major challenges.
The first time I was diagnosed and treated for Lyme and Babesia, I truly believe I knocked the Babesia out (I hope!). The major symptom to stop hitting me so hard was the severe fatigue. Of course, as stated above, Babesia affects your red blood cells, so you are virtually anemic.
I tested positive for Babesia, recently tested negative. This "feels" right to me. I do still have Lyme. The tiredness and fatigue come and go, but it is not as completely debilitating (for me) as it was when I also had Babesia.
Keebler's post is a good one. In a greater sense, I think so many systems get unaligned that there is probably not one answer.
Treatment plus support are the best tools to use.
good luck-I have recovered much energy although I am not normal and really have to set limits.
Posts: 172 | From ohio | Registered: Feb 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
When I got better from Lyme and coinfections, that fatigue went away.
I also have a low thyroid and take Armour even though the Lyme is gone, the thyroid problem remains.
I am also anemic if I don't supplement iron.
Adrenal fatigue can be part of it.
Sleep apnea can also.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I kind of sped read through all of this-so I don't really know if any one has mentioned side effects of medications can also cause fatigue.
Posts: 365 | From Sylvania | Registered: Aug 2008
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posted
Wow, you guys and gals are great. I take an extended weekend for a little "me" time and discover this thread gets populated with good stuff upon returning.
To answer a few questions:
Keebler, my LLMD is ILADS educated which is the disturbing part. The last visit is making me question several things. Perhaps I caught him on a bad day, not sure. My diet (including protein) have been taken up a notch and helps a little. Thanks for all the good information to research.
17Hens, I have also stepped up my detox recently which has also helped.
Sixgoofykids, I made my doctor do a full thyroid test and came back as normal leading me to believe it is Lyme and not thyroid related.
Lymetoo, the only coinfection I definitely had was RMSF but still wonder if Bart or Babs is flying under the radar.
Thanks for all this good stuff to digest.
Posts: 199 | From Let's Go Pens! | Registered: Apr 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
My thyroid was "normal", too, but close to the hypo end of the normal range, so he put me on meds. It helped, but getting rid of the disease is really what made the fatigue go away.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
It's VERY possible you have a coinfection. Most of us do .. and many have undiagnosed ones. Ask your dr for a trial run of babesia meds and see what happens.
You can't get well if you don't knock out the co's.
Good luck and God Bless!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Also, about the sleep apnea and sleep study thing....
....this is just MY guess, so don't take it as fact, but I would think sleep issues would be more likely if you felt the same fatigue everyday (so you're not a good day/bad day person) Though before my period it is even worse, but in general, I don't have "good energy" days like some people.
....and that makes sense, because a sleep issue would affect EVERY day, not just flare some days.
But I could be wrong.
Posts: 4590 | From Midwest | Registered: Jun 2008
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