I would like to hear from some of you who have CFS as I do. I need to better understand whats really happening here.
My fatigue came on strong with 16 hour days sleeping. This was after STRESS for 2 years and rebounding Lyme I was told by the Holistic Dr.
Now after everything from olive extract to fairy dust I function at a very slow restful pace if Im a good boy.
After over playing my hand again and again thinking AH! now I am pulling away , only to spend the next 4 -10 days in Hell , I am beaten down to the reality its not gone and I will pay.
I am seeing Lyme Dr. P next month.
So, my energy , perhaps from need to do some work around here allows me to work a few hours when I push.
The next day or 2 the bottom falls out. Never the day I work , thats just tiresome .
This is where I am stuck now. Is this the Lyme or is it CFS or both.
I realize some of you will read this and rightfully think I am doing well , but I am 25% at best.
Do some of you have drive but revolve around these highs and lows ?
Thanks for your help J
Posted by Keebler (Member # 12673) on :
- Motivation has NEVER been a problem for me. As you say, you have drive but the body cannot follow through.
I'm not sure if you've been diagnosed with lyme or not, - or treated for it (sounds like you did not get treatment) so my reply reflects that confusion.
But, Hey, I sit here at 5 pm, in my P.J.'s as I've not had the energy to stand long enough to shower yet today. I sit down, thinking I'll wake up after typing a post or two. Never quite happens.
Every chronic lyme patient has chronic fatigue. It just goes with the territory.
CFS is not just chronic fatigue but a more encompassing diagnosis, as I'm sure you are aware. There can be many causes for CFS and, like lyme, is it often a full constellation of things.
Until you get tested, it would be hard to distinguish if you also have the newly discovered retrovirus XMRV that seemed to be linked to many CFS patients in recent study. That test is not commercially available yet.
A good assessment (clinical evaluation, history, and testing) should be done for lyme and other co-infections that go hand in hand.
But, also know that, besides lyme, other tick-borne infections can create chronic fatigue as can any number of other chronic stealth infections such as mycoplasma, Cpn, HHV-6, etc.
And, adrenal dysfunction (which usually comes with lyme) can be an independent cause of fatigue or a contributor that needs special attention.
These infections can also cause autonomic nervous systems disorder and low blood pressure or hypoperfusion (low blood flow to the brain). So, don't push beyond safety.
The cardiac thread below has advice on safe exercise.
===============
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:
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODEGENERATIVE AND NEUROBEHAVIORAL DISEASES
- by Garth Nicolson, Ph.D. -
Posted by CherylSue (Member # 13077) on :
Try adrenal support. Also, EBV, HHV6, mycoplasma, and CPN can cause fatigue. Make sure your LLMD checks you out for these, too.
Posted by Keebler (Member # 12673) on :
- Regarding post-activity stuff, see the thread below.
Also, just yesterday someone told me that there is a newer 3-hour video that Cheney has made (in addition to the 3-hour video in this thread).
I have not had energy to hunt down the new links but you could find them through a search. This is a start to understanding some of the processes that can be contributing to fatigue - and what can help:
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
[ 10-15-2009, 08:40 PM: Message edited by: Keebler ]
Posted by JamesNYC (Member # 15793) on :
Yankeedorie,
(since this is a new thread, I'll be repeating myself a bit)
I was diagnosed with CFS back in '87.
CFS really does not exist as an illness. It is just acknowledgement that someone is chronically fatigued with no known cause or cure.
Keebler is right, everyone with lyme is chronically fatigued.
However, you are describing symptoms of a babesia infection. Have you been properly tested for babesia or other co-infections?
Babesiosis symptoms worsen with exercise The recovery time from exercise takes longer and it can wipe you out for a few days.
The abx that work on lyme will not work on babesia.
Anyway, you may want to pursue co-infections particularly babesia.
I hope you feel better.
James
[ 10-16-2009, 02:04 AM: Message edited by: JamesNYC ]
Posted by joysie (Member # 11063) on :
I second the babesia.Crushing fatigue 12-24 hours after exercise was one of my first symptoms. Kris
Posted by garunner (Member # 19474) on :
I concur with James and Joysie....profound fatigue, chills, excessive muscle twitching, nausea, and general flulike symptoms post exercise. It was one of my first symptoms 2 1/2 years ago. Been treating for 9 months and can now handle light exercise, as long as I stay out of the sun.
Posted by kim812 (Member # 17644) on :
I have had the profound constant fatigue/physical exhaustion for 5 years. It wasn't my first symptom but appeared about 6 weeks after my initial flu..
My body can't handle any kind of stress good or bad. If something stresses me out even a little it sets me back for days.
My body goes into overdrive and the exhaustion becomes even worse so even if I am having a great time doing anything I will pay for it later on.
The very strange thing for me is that I can exercise and even run at times and it has no bad effects later on. I have actually run in a 5K this year. It is the emotional stress or when I have to go to work (I enjoy my job) that does me in.
My dad passed away 3 weeks ago and I have been almost bed ridden since. The physical exhaustion has been tremendous and I can't do much of anything. I was with him at the time and well I guess I don't have to say anything more.
I treated babs for 14 months with Malarone and Dr. H said that was long enough. I have no babs symptoms at all and never had a positive titer in the 3 times I tested.
Posted by Yankeedorie (Member # 22723) on :
Good feed back from all of you has given be more information to share with Dr. P who I am told is the best.
I have some very close symptoms to what I am reading about here.
I am told he listens so hopefully your words and my feelings can get me started on a path. Thanks you all again J
Posted by seekhelp (Member # 15067) on :
Wow, 14 months of treatment without any positive titers?
Posted by Topaz (Member # 20216) on :
I'm so sorry about your dad, kim.
*hugs* to you.
Posted by aiden424 (Member # 7633) on :
I got sick back in 1986 and was told I had CFS in 1988. Exercise intolerence is my biggest problem. I get severe head pressure, sore throat, dizzy, upset stomach, hurt all over, low grade fevers, my head feels like I've been drugged, and so weak I feel like I'm going to pass out after only very little exercise.
I've had to use a wheelchair since I got sick or I'd never be able to get out of bed. It's like having severe mono all the time.
I've been treating Lyme for over four years with very little improvement. I had a positive Lyme test, but I think I have something more then just Lyme. I don't think I have all the pieces of the puzzle yet.
Kathy
Posted by aiden424 (Member # 7633) on :
Kim so sorry about your dad. Take care!
Kathy
Posted by WildCondor (Member # 434) on :
Hopefully this will help explain it some...
What everyone needs to realize is that chronic fatigue, fibromyalgia, and arthritis are not diseases by themselves. Of course, they are real, but they are symptoms, not diseases. If you go to the doctor, and complain of being tired all the time, for 6 months or more, you are probably going to be diagnosed with chronic fatigue. You have to use common sense here. You have a symptom, and you are being diagnosed with a symptom. It makes no sense! You need to find out the cause! Lyme disease, and the bacteria b.burgdorferi are one of the causes of the chronic fatigue. People join chronic fatigue support groups, they go on disability, they tell their family "I know what's wrong with me now, and I have chronic fatigue." I still find it amazing just how many people get sucked into this giant conspiracy and line of thought. None of it makes any sense, yet we are so happy to have a diagnosis, we accept it. Meanwhile a cause is not found, and the person is left with an undiagnosed and untreated infection. Symptoms of CFS, FMS, etc., often do go away once the underlying infection, such as Lyme, is treated appropriately.
Many thousands of people believe they have fibromyalgia, chronic fatigue syndrome, depression, multiple sclerosis and more, and still they have no idea what the cause is. Wake up people and think with your brains! Normal, healthy people do not just suddenly come down with MS, or are exhausted all the time for no reason, there is always a cause. Do not buy into the word syndrome either; it is just a word for a collection of symptoms for which the doctors label a syndrome because they have no idea what is wrong with you. The same thing is true for treatment of diseases. People seek out a cure, and what they get is not a cure, but medication to treat the symptoms. An example of this in Lyme disease is anti-inflammatory drugs, NSAIDS, or steroids prescribed to treat painful joints. The medications will work on the symptom, the pain, but the cause of the pain goes untreated. The smart treatment would be antibiotics, which directly kill the cause, plus supportive prescriptions to treat the symptoms and make the patient more comfortable. Therefore, in the previous example, the patient benefits from treatment aimed at the cure, plus they get symptom relief. Seek the cause people, always seek the cause.
I agree with everything you wrote wild condor but I did seek the cause after 2 years of the CFS diagnosis and still am not well.
Yes I was told I had Lyme and co's babs and bart. I treated for 30 months with various combos and still suffer from chronic exhaustion/fatigue which has destroyed my life. It hasn't gone away at all or even been reduced.
What do I do next. I went to one of the best LLMD's in the country and he couldn't get me well. Yes treated babs 14 months and bart 9 months.
I agree we are being diagnosed with a symptom but I don't know where to turn. I am frustrated and depressed, discouraged and have no clue who can and will help me find out what happened to me.
If anyone out there has any ideas on what I should do I would be happy to listen. I basically only have chronic fatigue/ehxaustion and no pain or any other symptoms. It is still my worse problem.
Thank you for the kind words regarding my dad. It has been devastating to say the least.
I am sorry we all are suffering with this horrendous fatigue. I don't seem to fit in with the CSF people or the Lyme sufferers. I don't know where I belong.
Posted by WildCondor (Member # 434) on :
It sounds like your treatment missed something if you are still sick. Send me a PM.
For fatigue in general there are things that can help tremendously like Methylcobalamin B12 injections, cordyceps, Reshi, etc.
Posted by aiden424 (Member # 7633) on :
I think I have Lyme, but I also think that there is something else that hasn't been figured out yet.
Kathy
Posted by Erica741 (Member # 15186) on :
quote:Originally posted by JamesNYC: However, you are describing symptoms of a babesia infection...
Babesiosis symptoms worsen with exercise The recovery time from exercise takes longer and it can wipe you out for a few days.
Interesting! James, so then the hallmark CFS symptom of "post-exertional malaise" is generally caused by Babesia?
Would you share any links and/or point us to where you found this information?
I'm especially interested, as this would tell me a lot re. the onset of my illness and if babesia was the triggering infection. Thanks!
Posted by seekhelp (Member # 15067) on :
Exactly what I deal with James. Complete wipeout after any exercise for days. Posted by WildCondor (Member # 434) on :
That can happen with Lyme too, or any chronic infection that taxes your adrenal glands and your overall immune system. Try Methyl B12, it really seems to help with stamina atleast.
Some of you are missing the point, especially saying things like "a symptom of CFS" when CFS is a symptom (or cluster of them) in itself. There are tick borne infections causing the fatigue in most of our cases.
Something is definitely missing there though treatment wise, there has to be something to help prevent that from happening. I remember when I used to work out sometimes just a fair amount and be flat on my butt in bed the next day, sometimes for 3 days afterward and just wanted to sleep. Its really important not to overdo yourself (easier said than done, I know).
Anyone else have ideas for how to combat post exertion fatigue?
Posted by Elizabeth S. (Member # 22405) on :
It wouldn't hurt ANYONE having exercise intolerance to get tested for something as devastating and potentially fatal as babesiosis.
But this "hallmark" symptom of post-exertional malaise, for a particular subset of patients that have been diagnosed with "CFS," is accompanied by muscle paralysis; not mere fatigue.
If that's happening, you can be sure something else besides babesiosis is happening.
Posted by seekhelp (Member # 15067) on :
I've tried it all WC. Nothing's put a dent in my fatigue.
Posted by Erica741 (Member # 15186) on :
WildCondor, I can't speak for everyone else, but I do understand and agree with your main point...which is that CFS and other such "syndromes" are merely labels for a cluster of symptoms for which the doctors don't know the cause. They are essentially wastebasket diagnoses given to patients so the doctors don't have to say "I don't know what's wrong with you".
Unfortunatley most patients accept their wastebasket diagnosis and are fine continuing on with a mysterious chronic illness.
However since this is a Lyme disease board, I assume anyone posting on here is at least exploring Lyme and/or other infections as the cause of their illness.
As for the post-exertional fatigue, I think it would be incredibly helpful for patients and doctors if there is one particular infection that tends to cause this symptom.
If James is on to some new research out there, then think of the possibilities! Patients with negative Babesia tests could get an easy clinical diagnosis and start proper treatment just by reporting post-exertional fatigue as one of their main symptoms.
I've been treating Babesia for a year and Lyme for an additional 6 months. I'm currently on 2 IV meds and orals for both infections.
I'm also doing IV glutathione, Methyl B12 shots, and taking a decent spectrum of targeted oral supplements including cordyceps.
I even took NT Factor Energy for a few months, and my LLMD eventually took me off it because it wasn't helping at all.
Many of us are seeing the top doctors and doing everything "right", but are still housebound with fatigue and other debilitating symptoms. I don't think I need to explain how incredibly depressing and frustrating that is...
Any ideas to get patients like me on a better track back to health? I'd try just about anything at this point.
I'm also doing quite a bit of detox, but suspect I could be doing more or better in this area...open to suggestions!
Posted by JamesNYC (Member # 15793) on :
Wild Condor,
Your points are right on the mark, as usual.
CFS is really BS as a dx Posted by JamesNYC (Member # 15793) on :
Erica,
quote:Interesting! James, so then the hallmark CFS symptom of "post-exertional malaise" is generally caused by Babesia?
Well, I would put it differently: The hallmark symptom of Babesiosis is "post-exertional malaise". There maybe something else that causes this too, but babs definitely does.
How is your babs being treated? I was given the "standard" tx for 6 months and though I improved, I relapsed soon after I stopped tx. Now I've been on 2x the Mepron dosage and it's definitely made a big difference.
Babs tx is not well understood. My LLMD said that the tx was taken from what works with malaria. However, it has not been proven that it's the correct tx for babs. It has to be adjusted on case by case basis.
This isn't new info on Babesiosis. It's mentioned in Dr. B's treatment guidelines.
quote: Fatigue is prominent, does not clear with rest, and is made worse with exercise
He has a lot more on Babs in the guidelines.
The symptoms of Babs are not as widely known as those for lyme by most people with TBD.
Babesiosis is basically a type of anemia. Many RBCs are inactivated because they're infected so there aren't enough for normal oxygen transport to organs and muscles, etc. Recovery from exercise takes much, much longer
If you look up the symptoms of anemia, they are very similar to babs.
Babs made feel like I was carrying a 50lb pack around. Just going for a walk took unusual effort. It also felt like the first day at high altitude, in a state of low oxygen.
As I've gotten better, that feeling has gone away. I had forgotten what it was like to feel "normal".
Lyme fatigue makes me want to sleep all the time. With Babs fatigue I felt wiped out, especially after aerobic exercise, but not 'sleepy".
For me, babs has been a bigger problem than lyme.
James
Posted by Cass A (Member # 11134) on :
Just a shot in the dark, here.
One thing that can cause incredible fatigue is lack of proper electrolytes.
These get sweated out with exercise or in a hot climate or in an area with low humidity. Some conditions cause people to excrete them more than they should, also, like KPU, which has been discussed here quite a bit.
A person needs twice the potassium as sodium, just for starters. Most "salt pills" don't have that ratio.
What has really worked for me in dealing with this problem is Electrolyte Stamina from Trace Minerals Research.
NOTE: I also had the general huge fatigue, which improved with Babs treatment. I still need a nap every day, but haven't seriously treated for Lyme yet. These were additional types of fatigue to the one that electrolytes help.
Hope this helps!
Best,
Cass A
Posted by kim812 (Member # 17644) on :
seekhelp- me too...nothing has touched my fatigue. I don't even like using that word because that doesn't even begin to describe it.
I don't want to sleep or feel sleepy or sleep alot. Mine is a draining of life, physically exhausted feeling where I just can't go on. When I need to lay down I have too...I just don't sleep and resting doesn't help at all.
I treated babs for 14 months with Dr. H and he said that was long enough since I had 3 neg. titers. So I don't know what my problem is but it is some type of infection that started all this.
I am on my search to finding out the answers and am starting from scratch since the doctors I had been seeing couldn't get me even 20 percent better. good luck to us all....
Posted by farraday (Member # 21494) on :
After a full week of testing at UC Irvine in 1996 it was determined that I had CFS and Fibromyalgia. I was in a wheelchair, on oxygen and totally bedridden and had been for 8 years.
A port was installed in my chest for IV lidocaine for the pain. I gave myself methadone shots.
In 2003 a blood draw from my port showed severe staph infection. I was hospitalized for 6 weeks on 2 IV's daily of vancomycin and naphcillin. The side effects were horrendous. I had a rash all over me. I lost 70 pounds.
But I got well! I walked out of the hospital and the doctors called it a "miracle". Not once was I tested for lyme disease.
My "cure" lasted a few years and then I began to relapse. That is when my husband became suspicious and had me tested by PCR and lyme was found. Subsequent testing found additional bugs.
So my "syndrome" was caused by an infection. My current LLMD said it was a real shame (and malpractice, I think) that I wasn't tested sooner and that the antibiotics were stopped. I might not be in bed today!
Now I take weekly bicillin shots and we are hopeful that I will not need to use IV antibiotics again. I am totally exhausted, fed up, and very angry at the life I have lost due to poor medical care.
Yesterday we celebrated our 27th anniversary. I am so blessed to have a wonderful husband and family....I try to remember that and forget that I have been ill for all but 6 of those years.
My married daughter cannot remember me when I was well and running my own company. My sons do and they, too, are very, very angry!
Posted by aiden424 (Member # 7633) on :
[QUOTE]Originally posted by kim812: [QB] seekhelp- me too...nothing has touched my fatigue. I don't even like using that word because that doesn't even begin to describe it.
I don't want to sleep or feel sleepy or sleep alot. Mine is a draining of life, physically exhausted feeling where I just can't go on. When I need to lay down I have too...I just don't sleep and resting doesn't help at all.
That's exactly how I feel!!!! Fatigue doesn't even begin to explain how I feel. I feel like I'm dying. I only sleep eight hours a day, and sleep does not help.
It feels like life has been drained out of me. Its more of a weak feeling. But way beyond weak too. The only thing that I know I can compare it to is severe mono. I never had it, but my son did and he was as sick as me. Same symptoms too.
Kathy
Posted by sutherngrl (Member # 16270) on :
Me too! Fatigue does not even come close to explaining it. I call it the "death fatigue", because it does feel like you are dying.
I have seen slight improvement in this fatigue however in the last few months with Lyme treatment. Did not see any improvement in fatigue until 16 months of treatment.
Still have to be very careful about any activity. I walked on my treadmill when I first felt improvement and it laid me up for weeks.
Posted by Need Lots of Help (Member # 18603) on :
Aiden I agree about the way you defined fatigue, good choice of words, I will use that next time they ask me if I am mentally or physically tired!!
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