posted
What has anyone found to help with fatigue? This is my worst symptom. I do B12 injections, multi-vits, MSM, tyrosine, fish oil, cerefolin with NAC, milk thistle and a few others. I am on cortisol, florinef, and growth hormone. I've had a few EDTA IV treatments for metal tox.
This is not an inexpensive disease to have. I can't do high doses of Vit C as it increases absorption of iron and I have hemochromotosis. That's a genetic disease where my body absorbs too much iron.
I've been on antibiotics since the end of June and no difference with fatigue, still feel bad daily. Less neuro symptoms as far as tingling/numbness, chills. I was Igenex positive. Liz
Posts: 383 | From Ar | Registered: May 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The ONLY thing that helped me was Adderall. I often can't get out of bed without it. I also tried Provigil; which was somewhat helpful. I think it is worth trying Provigil first and if it doesn't work see if you can get Adderall prescribed.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
I do take 1/2 provigil when I know I need energy. But, the best thing I ever did was get my Vitamin D tested. It was really low so a non LLMD told me to take calcium. It didn't work and I asked my LLMD about it. He said, Calcium won't work well without adding Magnesium. Try that...it's cheap and I've tried everything for years and something that simple help me immensely.
Posts: 20 | From Philadelphia PA | Registered: Apr 2004
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
Unbelievable stuff - blasts oxygen into your cells. Works so well, I would suggest only taking it in the am. For me, a later dose would keep me up.
But boy does this work. I can recall taking when I was upping my intake of Cat's Claw, which would cause instant brain fog. Stick an NADH under your tongue and results are within minutes. (Also kind of tasty - reminds me of something from my childhood..)
-------------------- Julie _ _ ___ _ _ lymeinhell
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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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
A few thoughts...
You may not be sleeping well. I had no idea I wasn't sleeping well until I started a muscle relaxer at night, zanaflex, and suddenly woke up after 7 hours feeling fully rested. Before that, I would sleep 9 hours and be exhausted. My boyfriend then informed me that I was always restless at night.
Have you been tested for adrenal fatigue? I'm assuming you are from the cortisol, but if not, worth getting checked out.
Diet. Do you eat a lot of sugars or simple carbs? If so, increasing protein can increase energy.
What medications are you on? Some medications can cause fatigue.
Taurine is supposed to increase energy. As well as amino acids, if you are deficient. Pretty much, anything you are deficient in will give you energy.
I'm also pretty sure that too much iron in the system can cause fatigue. I'm not sure if you have too much iron with your condition, or if you are able to control that.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Provigil helps me. It is expensive and usually hard to get approved. Your doc may be able to give you a few samples to try. My doc just gives me samples to get me through.
Also have you ever had a sleep study? I have sleep apnea (actually it seems to have gone away after losing 30 pounds)
If oyu have sleep apnea, it is a labeled use for provigil and make it easier to get. If you cant tolerate that I was given ritalin. I really dont take any of these meds much, but when I do it is the Provigil.
Good Luck, Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Siberian Ginsing...I take 1 in the AM & 1 in the afternoon. Don't take 1 in the eve or you'll be on Lymenet all night, lol
Posts: 176 | From Tenn | Registered: Jul 2004
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posted
Have you tried malic acid and magnesium? When I took this, I got instant energy. Malic acid is from apples; the capsule form is much more concentrated. The capsules I took had at least 200 mg magnesium in them, with up to 1300 mg(or sometimes less) malic acid.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
This may sound simplistic, but rest (I do not work outside the home yet) and some exercise. Exercise for me comes in the form of walking and 10lbs weights (not while I walk!). Low weight heavy reps.
I fall asleep okay (around 11 or 11:30) but tend to wake 3:30-4:30 am. Not enough quality sleep for me. This forum is great, but each of us has been effected (affected?) in a different way. Try some of the different ideas, if your LLMD says it is okay. You may stumble across a connection that works for you.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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Annie C
Frequent Contributor (1K+ posts)
Member # 14
posted
Adderall is and has been THE ONLY thing that has helped me.
Every ones dose and effectiveness is different. I wish I could afford the Time Released which I started on. Then insurance would not pay.
So I began the tablet. I take 15mg. 3 times a Day. Then there will be days when the Herx is winning and the 3 times a day dose just doesn't have its full potential.
Then there days when the Fatigue is not as prominent so I will skip a dose.
The Script is cheaper by getting #45---30mg. then I cut it in half. Also because they do not make a 15mg. and the 20mg is a bit much.
I have been on this dose for 3 years without the need to increase the dose.
Good Luck and Drink Lots and Lots and Lots of water and Green Tea.
Sincerely Annie
-------------------- May God Bless you every day. And Never say never and do not give up no matter what. We need you to help others. Posts: 1288 | From Tetons Wyoming | Registered: Oct 2000
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
That is almost exactly how I take the Adderall; great information!!!!! The way you described it works very well for me.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Thanks evryone. I'm going to try these suggestions. I did a search on Adderral and it has me a little skiddish to try.
I ordered the mangosteen today. I take citracal with mag. My vit d level was ok. I have to take ambien for sleep or I would lay awake till 3 am and thne wake frequently. I had my adrenals stimulated, my baseline level was 0.1 and stimmed to 0.5 and diagnosed with Addison's. My blood pressure was dropping over 20 point when I stood so take florinef too.
I'm sugar free and use stevia. I miss my ice cream and chocolate. Lost a little weight that I didn't need to.
I'm not able to work. I never feel rested. My activity level is very limited. If I push too much I just feel worse.
I take cortisol, florinef, armour, potassium, ambien, cerefolin with NAC, skelaxin, darvocett, zithromax, nystatin, theralac, vit D3, and all stuff listed in my initial post and I probably forgot a couple things. Way too much......I just want to get better. Thanks you guys. Liz
Posts: 383 | From Ar | Registered: May 2007
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I know this makes no sence at all but lately, everytime I have a handful of pumkin seeds I get more energy....they are unsalted , so it's not the salt.
maybe it's something my particular body is craving?.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I do hope you ordered Xango and not a copy-cat product. The others are not very effective as they do not contain the whole fruit puree.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
"My blood pressure was dropping over 20 point when I stood so take florinef too."
Hi Zil
A recent article I read mentioned the possiblity of a side effect of stevia was that it lowers blood pressure. Not sure if this will help but throwing it out there anyway.
~ scroll down to californialyme for the article on stevia & blood pressure:
posted
I ordered the Mangosteen at vitacost.com. Is that a good product?
I just started the stevia in August. I was having the B/P problems and started on florinef about 4 yrs ago when I was diagnosed with adrenal insufficiency. I'll have to do a search on pumpkin seeds. Even with taking florinef my pressure will get low at times and some salt will help some.
Posts: 383 | From Ar | Registered: May 2007
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I just read the book "Adrenal Fatigue" by Dr. James Wilson and it made so much sense to me. His site is www.adrenalfatigue.org. I highly recommend you check out hte site, and read the book if you can. It makes so much sense to pay attention to adrenal fatigue, especially with a chronic stressor like an infection.
I picked up a lot of good pointers, and a great understanding of how all the body systems work together - adrenals, liver, thyroid, hormones, etc.
How is your sleep? It is so important to be in bed by 10pm, and if possible, sleep between 7am and 9am. These are crucial times for your adrenals to replenish. Also, try to lie horizontal sometime throughout the day to rest the adrenals.
Are you comfortable with the cortisol you are taking? Too much or too litle cortisol can really mess you up. Have you done a cortisol saliva/blood test to measure levels throughout the day?
Are you on a raw adrenal glandular?
Posts: 117 | From Chicago, IL | Registered: Jan 2006
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posted
I just checked the site and didn't see an "ultra" mangosteen juice. I ordered the Mangofruit Extract, 2 bottles. Guess, junk? What and where do you order yours?
LZOChicago thanks for your response. I'm on full replacement adrenal hormone. Cortisol 30mg a day and florinef 0.1mg. My adrenal glands aren't fatigued they are dead.
I had the stimulation test in 02 and they don't stimulate. I have 24hr urine 17-hydroxysteroid levels checked for my dosage. It has shown my dose is a little high but I can't function with taking less.
I think having a chronic bacterial infection(Lyme) has been causing me big problems as it puts a stressor on my body and I don't have the cortisol pumping out of my adrenals to compensate. Cortisol is the bodies stress hormone. I'm hoping when the infection is gone I can lower my cortisol dose.
I'm pretty much housebound and have been for 8 yrs. I had trouble with fatigue, neck stiffness, some joint problems for years then 8 yrs ago I was disabled---horrible fatigue and lived bed to couch, extremely ill , dropped to 98lbs and diagnosed with Chronic Fatigue syndrome.
Two years of exisitng that way I was finally and, I didn't think I was going to make it, was diagnosed with Adrenal Insufficiency. 2 yrs later Growth Hormone Insufficency. Now, Lyme.
If it is Lyme causing all these health problems it has destroyed my life. Now a thyroid nodule to be biopsied. It's a disease that just keeps on giving.
Posts: 383 | From Ar | Registered: May 2007
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I'm sure the web site explains how and why it works but what I understand is that it works to restore the mitochondria of your cells, the part of the cell where energy is produced.
This particular formula is important because it has bifido and lactobacillus with it to enable it not to be destroyed in the GI tract but instead absorbed.
I swear by this stuff.Fatigue was one of my complaints and with this I have tons of energy. I was feeling so good I thought I didn't need it anymore so I stopped to try to save money. Of course within weeks the fatigue was back.
I might not be able to afford all of the supplements that I would like to take but I now make NT factor an essential.
I take one three times per day. A bottle of 90 is about $50, a months supply. The first three months however the manufacturer suggests a loading dose of two tabs three times per day, so the first three months are a little more expensive but,at least, in my experience well worth it.
Hope you are feeling energetic soon!
Posts: 58 | From NY | Registered: Dec 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Life inlimbo
This supplument looks like a pro-biotic?
ps Sorry, yikes I didn't click on enough links.
I clicked on the first link & then on the second link in blue & then scrolled down to find where it does mention other ingredients
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
I thought fatigue is caused by lack of magnesium for the ATP energy cycle for our cells. When I didn't know I had Lyme, but thought it was fibromyalgia, I took malic acid with magnesium, I think one 200mg capsule at a time, and instantly got my energy back. Like swimming in the fast lane of the pool instead of the slow one. Life In The Bizarre Lane ought to be a title for what we go through...
Re Ultra mangosteen juice, it is listed at vitacost. It's also in healthfood stores. It doesn't affect my energy level. It keeps my eyes normal, intestines regular, and probably some other nice health benefits I'm not aware of. I am very happy with these benefits.
Lymetoo, I have a bottle of Xango in my fridge! Only problem is, I am herxing on it. Does that give you any idea of how powerful this juice is or how unfar along I am in Lyme treatment?!
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Robin123: Lymetoo, I have a bottle of Xango in my fridge! Only problem is, I am herxing on it. Does that give you any idea of how powerful this juice is or how unfar along I am in Lyme treatment?!
Probably how powerful it is. According to Dr James Duke [above], it is anti-bacterial, anti-viral, and anti-fungal to name a few good things it does that could result in a herx.
I've always just felt GOOD on it, not herxing...but I've run across others who herx on it. My guess is that if you would just continue drinking it, the herxing would be gone within a week.
Let me know if you try that. I'd be interested to know whether I'm right about that or not!!
PS...My first experience with it, I had a bad headache for three days. So maybe that was my "herx." I knew it was just clearing toxins.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Zil, are you taking Ambien CR? I was on trazadone or regular Ambien for sleep and it would put me to sleep but I continually had wake-ups all night long. Fatigue didn't improve until I started taking Ambien CR.
CR will put you to sleep and then keep you asleep throughout the night. I never wake up now unless the grandchildren are spending the night and they call to me. Which is a good thing because I'm not dead to the world....just enjoying restful sleep.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
After 13 years of chronic LD,standardized Goji juice has done more than anything I have tried. Daily naps are no longer the norm.
Mary
-------------------- This is only my opinion and/or experience with Lyme Disease. I am not a medical professional. Posts: 587 | From usa | Registered: Dec 2000
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posted
When I was having problems with night awakenings I tried the Ambien CR and it didn't work for me. I'm not having night awakenings now, seems to be a cyclic thing and just using ambien to get to sleep.
I never thought about Mangosteen causing a herx. I've been on zith about 30 days and stopped taking it about a week ago after 3 days of laying on the couch all day feeling horrible with increased symptoms. Couldn't get into the shower for 2 days.
I had started the mangosteen a couple days before those terrible 3 days started. It's been 6 days off zith and I didn't take the mangosteen yesterday or today. I'm going back on zith tomorrow but will skip the mangosteen for a while. I'm afraid to go back on the zith but don't have much of a choice but to get through this. Maybe my bacterial load is too high for both zith and mangosteen?? Liz
Posts: 383 | From Ar | Registered: May 2007
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