posted
I'm wondering if anyone has had success with a particular supplement/lifestyle change/or medication to combat their fatigue symptoms.
Many days the fatigue is worse than the pain, i almost think i could deal with the pain..if i had energy. I have gained a-lot of weight since all this started...which Im sure isn't helping the fatigue any. I've seen something on here about the adrenal flush but I have no idea what that means.
It's strange because the pain has definitely gotten a little better since I started antibiotics. But the fatigue is worse, and now im short of breath all the time, and also my feet feel like they are burning which i realize from a previous post is probably a co-infection...even though I did test neg through igenex for every co infection.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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posted
Have you tried any diet changes to see if they help with fatigue?
It has not been a complete solution for me but once I went gluten free, dairy free, and mostly sugar free (some fruits) I have had more energy.
Posts: 186 | From colorado | Registered: Jul 2010
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posted
Well, not every one will agree with me - but if you are getting appropriate treatment for the issues that are causing your fatigue, you might consider something like Vyvanse or Provigil to tide you over.
Provigil is primarily used for narcolepsy, but also ADD. Vyvanse is an ADD med. I could not function without my Vyvnase. I am not sure how much is ADD and how much is Lyme.
The downside is that if you push yourself too much - beyond what your body is capable of, over and over, you will make things worse for yourself. Even with Vyvanse, I need to make sure I get enough rest/downtime.
racer
-------------------- Me - Igenex: IgM: 41IND, IgG: 39IND, 41+ but Plasmid PCR Positive Kiddo - after 1 year IV - positive Lyme culture (before IV: IgM:31,34,41,83-93 IND; IgG: 41+++, 66+) Posts: 133 | From CT | Registered: Feb 2011
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posted
As far as dietary changes, I was doing gluten free for a few weeks....but fell off the wagon. I didn't notice any changes though in how I felt on it. I've been watching what I'm eating and trying to eat healthy. Maybe I need to go a more drastic route...for a longer time.
Thanks for the suggestion racer...i can't have anything with a stimulant in it (even coffee) due to anxiety, makes my heart race.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
i've had cfs for 18 years now sometimes worse than others. treated for babs twice. really did not help that much. doc just gave me ritalin i think its 5mg i just started taking that and yesterday was the first day in 18 years i did not need an afternoon nap. we tried provigil which might have worked at a lower dose and works better in adults .the only problem is i was running at 80 mph and felt like i could not stop moving.
it must be worked in with other meds but they do work and help with the cfs. also 5 hour energy in a bottle worked for me for 5 hours though. you don't want a long half life or you won't be able to sleep at night.
docdave
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Your post made me think babesia also.
While I was in treatment, I used Provigil for fatigue. That was after trying every supplement I could think of, and making a ton of dietary and lifestyle changes.
Provigil was not my first choice, but wow, did it get me through some dark days.
I took a quarter of a pill - so I used it very sparingly - and only on days I absolutely needed it.
But it helped.
And I haven't needed it in years now.
Hoping you find something to help soon...
-------------------- �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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posted
Thanks everyone, I will look into provigil....I need to be so careful, any stimulant (even caffeine) can send me into a panic attack. Im afraid of taking them. But I really want to start exercising again, and right now I have no energy to do it.
oh also, Im on doxy and zithromyacin...i believe the zith treats co-infections?
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I don't know how many meds you are on but the medicine makes me really tired. Today I decided to cut back on my dose and I have so much energy. It's just something to keep in mind.
Also, I find that the supplement multi-immune transfactor (I think that's it) is excellent for feeling better and less tired.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Jennifer.. it would be better to just treat the likely babesia. Zith alone (or with doxy) will not do it. Fix the cause of the fatigue.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96238 | From Texas | Registered: Feb 2001
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
Regarding the foot pain, I have heard bartonella is more foot/sole pain early morning, as you just get up and start walking. And babesia is more all the time, or, if intermittent, any time in the day.
Posts: 1927 | From se usa | Registered: Mar 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
My worst symptom was fatigue. (Athough brain fog and severe foot pain weren't too nice either.)
It reduced with bartonella treatment, more with tutu's yeast diet, even more with babesia treatment, and now with parasite treatment it is all but gone!
(editing to say I'm doing parasite treatment and still doing babesia treatment)
-------------------- "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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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Just wanted to say... Listen to Lymetoo. Treat the cause of the fatigue.
Provigil was a crutch for me while I was in treatment and caring for an infant. It was necessary, but would have been useless without babs treatment.
Also - if you do opt for that route, be very cautious with it since you are sensitive to stimulants. Take a tiny dose. A sliver. And see how you react.
But do investigate babs treatment first and foremost.
Treating the cause is so much more important than treating just a symptom.
-------------------- �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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chiquita incognita
Unregistered
posted
the problem with lay diagnoses is that there are so many things which can all cause the same or similar symptoms. It's important to report to your doctor and have him/her check you out.
I had the same symptoms with chlamydia pneumonia. My LLMD said that it doesn't matter if the infection is past or current: The immune system doesn't always hold down the infection, he said so it can resurface. Therefore if you get a "past infection" lab reading he said to treat it as if it is current is important.
FYI I am taking a herbal for it (on my own, not my LLMD's advice and do this only wiht your doctor's supervision please!) While it's too soon to go for lab testing, it's been less than a week, I already notice my breathing clearing a bit. It's been weird for a few years, and I never knew why.
I am going to have myself tested after taking it for a month to see how the lab numbers reflect on the infection (ie did it lower the lab numbers?).
If you don't like the alchohol extract (less expensive) then they also have capsules (cost a bit more).
PS editing to add this note: I just noticed that it contains St Johnswort which has anti-viral properties fyi. However it also can interfere with the absorption of many mainstream medications. Talk to your doctor before taking this product to be sure there is no drug-herb interaction.
There are many things that can cause fatigue, but sometimes lowered immunity is one of them. To beef up your immune system could be helpful.
There's a good book called Strengthening Immunity edited by Len Saputo, MD it's excellent reading. Really teaches you a lot about how the immune system works, has an excellent sleep chapter, and natural support for the immune system.
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posted
For what it's worth - another vote to look at Babesia.
I thought I had the Babs beaten back. Severe fatigue the past several months and now my LLND says ART shows it is currently one of my body's top priorities. Surprised the heck out of me!
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
If your sensitive to stimulants i would skip provigil. I believe it has a long half life, which means once you take it it takes awhile to get out of your system. I took t before, but i liked ritalin bettet. You can take a smaller dose and it wont stick with you as long. Ins is more likely to cover it too.
You could try b12 injections...i used to get them from infserve.
Posts: 3905 | From USA | Registered: May 2007
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posted
Thanks, I'll bring up possibly switching treatments with my LLMD.
Katie..thanks, I'll look into it..I wonder how expensive it is...no insurance right now.
Lab Corp gives a pretty decent discount if you don't have insurance, but I already have a bunch of labs my dr. ordered that I can't afford right now.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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