WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
From the day I got sick, overwhelming fatigue has been my #1 worst, and most constant, symptom. I would love to know what has worked for others to overcome fatigue?
So far, the things that have seemed to help are: C0Q10 (slight help), an adrenal recovery program (definitely helping) and Thermotabs (I think they're helping but I justed started and it's too soon to tell for sure).
I'd love to know what else is out there.
thanks!
Posts: 1737 | From Virginia | Registered: Aug 2011
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For me, I had a problem with iodine overload and went hyperthyroid. I actually felt amazing with my thyroid pumped up a little. Now it's low so maybe I can get it back up.
Posts: 458 | From Miss | Registered: Mar 2009
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Razzle
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posted
L-Lysine has been very helpful for me. I take it about 15-20 minutes before breakfast, and am able to stay awake all day and function. I used to not even feel like getting out of bed before starting the L-Lysine.
L-Lysine is needed by the mitochondria (the cellular "energy factories" that make ATP) in order to make one of the enzymes in the whole energy/Krebs cycle.
Some with CFS also find NADH supplementation helpful. I tried it, but found it to be not worth the expense.
I also find that a little GABA in the evening makes my sleep quality a whole lot better. I have had to take a short break from the GABA, but will not hesitate go back on it if I need it again.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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nonna05
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posted
I don't think I can do Q-10 , on Mepron???
How much L-Lysine???????? Just one more thing,but fatigue is so bad ...
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I've been taking 1000mg L-Lysine (brand is Country Life, 500mg capsules, includes a small amount of Vitamin B6 to help with the use of the L-Lysine).
One bonus to taking the L-Lysine is it has anti-viral effects also, which is great during cold/flu season.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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ukcarry
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posted
Nonna05, you're right in saying that Co Q-10 should NOT be taken if you are on Mepron.
Posts: 1647 | From UK | Registered: Nov 2008
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jackie51
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Member # 14233
posted
Do not take CoQ10 with Mepron.
Treating Babs has been the best thing for me in the way of treating fatigue. So...Mepron/Zith/Art did the trick for me.
Going gluten free has helped with neuro issues and joint pain.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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nonna05
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posted
Jackie..Hi ! Time frame????????
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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jackie51
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Member # 14233
posted
Mepron, 16 months. One of the following in the order shown: Zith, Doxy, Biaxin, Ceftin. Art for 3 months. Then Art again for 2 months.
I've been somewhat gluten free since March. If I cheat, it now bothers my stomach. It used to just be a nap later that day or the next day. Gluten now causes great fatigue and horrid stomach pain. Need to work on gut strength to get over this, if I ever get over it.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
The L-lysine is a great suggestion and I will ask my LLMD about it. I looked it up and read that it's in meats, nuts, etc. Maybe that explains why I feel so much better when I eat protein every couple of hours. I can't tell you how tired I am of nuts!
Buster, my adrenal recovery program consists of taking dried adrenal, adrenal complex and dremanin in a specific declining dosage schedule.
I'm finally fully treating my babs (mepron, zith, art) so I'm hopeful that will help, although I'm discouraged to hear that it took 16 months.
Posts: 1737 | From Virginia | Registered: Aug 2011
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MannaMe
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Member # 33330
posted
Razzle, Will the L-lysine help for those who are tired but not sleepy?
WPinVA, what kinds of nuts do you eat? Which kinds do you like? I need to find a way to make them into a nut butter for my husband.
Posts: 2613 | From USA | Registered: Aug 2011
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Razzle
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posted
MannaMe,
It did for me, because I had a lot of fatigue without feeling like I could sleep.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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jackie51
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posted
Minimal for Mepron is 4 months. I went off at 4-1/2 months and it was too early. Took 11 more months to get there. Had to be symptom free for 2 months this time.
I've had this a long, long time so if you have a recent bite and got treatment fast, then it shouldn't take over a year for babs.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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WPinVA
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Member # 33581
posted
MannaMe, I usually eat a mix of nuts and dried fruit (I'm not avoiding all sugar) but it seems like almonds are particularly helpful. I like your thought of a nut better. I'm pretty sure I've seen almond butter and that would give me some variety.
Thanks for the info, Jackie51! That's very good to know. I was dx'ed about five weeks after I got sick. I have no idea when I was bitten and if it was years or weeks before I got sick. Also was unfortunately given prednisone before getting dx'ed so I have no idea where I fall in the scheme of things, except I certainly wasn't one of those who recover quickly.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
Jackie, how 'long' were you sick before diagnosed?
have only just started treatment. Diagnosed 4 months ago, but been sick for over 10 years.
starting mepron this week... but scared to. Got sicker than ever been after just 2 months of doxy & have to take a break.
I know it's hard to get a 'time' of how long till i'm feeling better... but it helps some to give myself some hope that in a year or two i'll be better than now.
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
Need some hope here guy's...Nonna
I so want to through about 10 pages of WHAT about THIS in my ID doc's face..
Especially since I asked for certain test, which they won't tell me if they took them or what. and they approved steroids shots 6 in 4 months, the REAL kind.
Sorry am so frustrated ,one more beautiful day inside.
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
angel--I don't really know for sure. At least 6 years. I've had symptoms since I was a teenager and I'm in my early 50's. I've been in treatment for around 4 years, and had been on a medical odyssey for two years prior.
I've always had symptoms but I always attributed it to something else. Even my husband thought that was the just the way I was. I know better now.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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Tammy N.
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Member # 26835
posted
My fatigue has lifted and my energy has returned to close to normal these last few weeks (like never before, in the last 12-15 years). I've been marveling at it. For me, it was either parasite treatment or the anti-inflammatory diet (wheat-free, dairy-free, sugar-free). Or maybe a combo of both??
After doing Ivermectin for 3 weeks, I had a very bad hellish reaction to Alinia (after just 1 1/2 days on it!) right before Thanksgiving. I was OUT OF COMMISSION for 2 weeks. Right then I started the anti-inflammatory diet. I was desperate to feel better. Shortly thereafter my energy soared. For a while I was thinking it was the diet (something I hadn't tried before). But then I realized it may have been more likely the parasite treatments (as I was passing parasites). I need to continue parasite treatments but am enjoying a treatment break right now because my energy is so good. But my other symptoms are coming back strong (hot burning buzzing/tingling, muscle aches, etc.)so I plan to resume treatment shortly. Have to see what route the doc suggest as far as meds/supps, etc.
Good luck!
Posts: 2238 | From East Coast | Registered: Jul 2010
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WPinVA
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posted
Tammy, that's great! So nice to hear of some success.
How did you know you have parasites?
Posts: 1737 | From Virginia | Registered: Aug 2011
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Tammy N.
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posted
I had been listening to a lot of Dr. K's presentations and read everything I could get my hands on of his protocols, etc. Plus the posts here on Lymenet, especially from Gigi and glm1111.
From there, to start, I tried 30 days of Humaworm (an herbal supplement) and within about 2 days I started passing tons of larvae (looked like sesame seeds and white poppy seeds). I did not treat further until I went to Dr. K's clinic.
Definitely read up on parasites. So many people don't think it's an issue for them, when the truth is that it is likely a primary issue for most of us with chronic Lyme.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
I think that the Vitamin D that docs prescribe at 50,000 iu's is Vit D2 and what you need to take is Vit D3. Please double check this info to make sure I am remembering it right, but I think that is what I was told/read.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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posted
The fatigue when you are fighting babesia with mepron, etc is abnormally crushing. It gets better after a few months. I would literally crawl up on the floor/couch/bed and go to sleep wherever I was at. After Months 3-6 on mepron it got better. I also think that selenium, Vit D, and fish oil/primrose oil and parasite treatment helps. If you can get your hands on kefir grains, my stomach/gut felt better after drinking homemade goat's milk kefir for several months. I also was able to get VSL DS a precription strength probiotic that helped replace the gut flora and fight off the c diff. among other things. I changed my diet to pretty much organic food only. This made my own immune system better able to fight this disease. Focus on making your stomach and gut healthy. Without a good GI system you cannot win this battle. That means getting rid of parsites like Gigi says and probably metals (I take chlorella and getting rid of my amalgams soon), and building up your gut flora with good quality probiotics which are best from food (Organic saurkraut is pretty tasty) or high grade supplements. Try to eat organic and natural foods, no processed, refined, empty foods. Get a Far infra red sauna to help with detoxing, raising your core body temperature and boost your immune system. pray or meditate, to heal from within. Let go emotional burdens you don't need to carry any more, elinate toxins (including mold) from your environment and food/water. Reduce the burden that your body and spirit carries and focus on killing and detoxing the best you can. The fatigue is your body saying it needs to rest to heal. Listen to your body and rest it, while also keeping in mind that you may need to find out if your adrenal system needs to be fixe, if so try some adaptogens like ashgawanda or others or maybe acupuncture and Chinese herbal medicine (CHM). If you want a remarkable CHM and acupuncturist in Leesburg, VA with experience treating lyme pm me. Take care.
WPinVA
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Member # 33581
posted
Thank you so much to everyone who responded. I took a lot of notes. So much to learn.
Posts: 1737 | From Virginia | Registered: Aug 2011
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lymeinhell
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Member # 4622
posted
NADH is a miracle energy boost. It blasts oxygen into the cells. You take it sublingually and feel it's effects quite quickly. I used the 10mg CO-E1
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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WPinVA
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posted
I hope I'm not jinxing myself by saying this, but I'm amazed at how much Thermotabs have been helping me. Before taking them, I couldn't stand up for longer than two minutes without support, and it's a pretty drastic difference. LLMD thinks I have dysautonomia.
I'm actually mad at myself for not trying them sooner because my LLMD had suggested them several weeks ago, but I forgot to try them until now.
Posts: 1737 | From Virginia | Registered: Aug 2011
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manybites
Frequent Contributor (1K+ posts)
Member # 33750
posted
Babesia treatment definitly.Than Bart and lyme both.
Posts: 1379 | From disable | Registered: Aug 2011
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Dear Friends,
The success with Thermotabs reminds me that I used to use them when I lived in Florida. I since have found Trace Minerals Research product, Electrolyte Stamina, which works even better for me. Especially if I'm working, hiking, or have had night sweats, this really, really helps.
Best,
Cass A
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Sorry am so frustrated ,one more beautiful day inside.
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