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Posted 11/23/2015 5:26 PM (GMT 0)
confused

I am at my wits end dealing with fatigue & exhaustion. This appears to be the remaining constant Lyme side effect that I am experiencing. I have a LLMD who keeps selling me on different supplements that appear to do nothing for me. Everytime I visit the doctor's office, it's another $500 - 600 out of pocket. I'm hoping someone on the forum has had some experience with something that provided relief for them so I can research/try for myself. I work 25 - 35 hours a week and by the time the weekend comes, I'm whipped and easily get 8 - 9 hours of sleep a night + 1 - 2 hours of naps Sat/Sun and usually something Friday evening. Thanks.
Posted 11/23/2015 5:50 PM (GMT 0)
hey,

Can you tell us what supplements for fatigue have you already tried ? (just to help identify what else you could try).
Posted 11/23/2015 5:59 PM (GMT 0)
Here's the list of everything from my doctor since I started seeing him this Spring:

Inflammamax 1 scoop twice a day
Chlorella Caps 1 pill twice a day with MC-drops
Prescript-Assist Pro 1 pill at bedtime
MC-BB-1 up to 18 drops twice a day
ImmuPro 2 pills twice a day, am and mid-afternoon
Argentyn 23 (Silver) 1 tablespoon with 1 tablespoon of aleo vera twice a day
MC-PZ Beyond Balance (use glass container only - no plastic) up to 18 drops twice daily
MC-BAR-2 up to 18 drops twice a day
Vitamin D3 1,000IU 1 pill each day
Primal Defense Probiotic 2 pills at bedtime
N-Acetyl-L-Cysteine 500mg 1 pill each day
Fish Oil 1000 mg 1 pill daily
Nattokinase 1 pill twice a day on an empty stomach (1 hour before or 1 hours after a meal)
Vitamin K2 1 pill daily
Oregano Oil 3 drops daily
Lymphatic Drainage 1 capful/ tsp twice daily


When I look back at all of this, I'm not sure if he's really trying to address the fatigue....Suggestions appreciated. Thank you.
Posted 11/23/2015 6:42 PM (GMT 0)
Hi Staceygar -

I see a few things in the list you posted for detoxing...but am wondering if you're doing anything else?
- epsom salt baths?
- dry brushing your skin before the baths?
- drinking lemon water?
- Alka Seltzer Gold?

Those are some of the ones I do regularly.

Effective detoxing is important to get those toxins out of the body...and help minimize the symptoms of the bacteria die-off.
Posted 11/23/2015 6:57 PM (GMT 0)
Hm, could it possibly be her adrenals or something? Do you ever feel tired, but "wired?"

Could just be the the toxins though, yes. It seems some people have lots of trouble with that, even when they think they're doing more than is necessary (though, must say that, when increasing your efforts, start off slow, 'cause too much detoxing at once is bad).

You've been around for awhile, so you may have been asked, but have you been tested for methylation gene defects that could affect your ability to detox? It's pretty cheap, surprisingly. $100 through an organization called 23andMe.

Afraid I don't have much more input, sorry. Still trying to figure this stuff out myself.

Hope some of what's been said here helps, hope you see relief soon.

-----------

ALSO, while I HATE to make this about me, if you've got the time, just a moment, if you could help out just a little bit, that'd be great. If not, I understand.

But, I figured that, while the both of us are here, I'd ask, how are those Beyond Balance products treating you?

I actually paid to have the saliva testing done, so I could order without a physician, but then came to the realization that I'm being held down by a bunch of other issues, more than would be addressed by their products, and decided ordering any.

I'm guessing I could order at anytime, so long as I have some sort of proof, which I've got, so it'd be nice to get some input on them.

Do they seem to be very effective (i.e., herxing a lot?)

Have you been improving, apart from the fatigue and exhaustion?

Thanks.
Posted 11/23/2015 7:39 PM (GMT 0)
When i started treatment my adrenals were crashed. I have done very good progress by using Ashwadandha standardized extract, before bed. It is an adaptogen, it helps regulate cortisol levels:
www.ncbi.nlm.nih.gov/pubmed/23439798

Also mitochondrial support is essential. Mitochondria are organelles in the cell that are very vulnerable to free radicals. When you have a systemic infection like Lyme, free radicals and inflammation are a huge problem. This will damage the mitochondria very easily. They are responsible for generating almost all ATP in your body. ATP is the principal source of energy of your body's cells. Thus you will feel tired almost all the time but even worse your organ functions will degrade because the tissues will be less efficient.

CoQ10 is an essential chemical in mitochondrial respiration, and thus in the production of ATP. I don't understand why there are LLMDs out there that do not prescribe CoQ10 to patients during treatment. It's an essential chemical...
Posted 11/23/2015 8:30 PM (GMT 0)
Good suggestion, Antonio - about adrenals testing. Poor adrenal function is often a cause of fatigue.
Another suggestion - thyroid testing.

I also want to add - that many people can't work while treating lyme...it may be just too much for you. I'm not suggesting you stop working - but just that it could be part of your fatigue issues. Your body may be using most of it's energy to fight the infection.
Posted 11/24/2015 4:07 AM (GMT 0)
I have this same thing. I had to ask my boss to lay me off. I could barely make it through the day, and slept all weekend. Now that I don't work, I sleep all day. Hopefully will get better in a year's time with abx.
Posted 11/24/2015 5:25 AM (GMT 0)
I'm another one that had to resign from a 15 year career because of lyme. I kept the day job for maybe 2-3 years after my initial diagnosis and finally I just had to leave. Took a couple more years to burn though what little I had in savings and retirement accounts. When that ran dry, I had to move back into my parents house (which is embarrassing at 45 years old). No money left for LLMD's so I'm self treating with essential oils only right now. Filed bankruptcy a couple weeks ago and had my "hearing with the trustee" last week.

A big fat thank you to lyme for completely destroying my life. :(
Posted 11/24/2015 1:42 PM (GMT 0)
While I agree you're taking a lot of stuff, most of us take a lot of stuff. Heck, I take waaayyyy more stuff than you do.

I wouldn't discontinue any of it but, I would most definitely increase my detox. An effective detoxing protocol really makes a difference. Maybe you can find new things to add from the list of suggestions I'm linking below....and make them part of a daily detox protocol.

www.tiredoflyme.com/detox-methods.html

Finally, Buhner recommends Eleuthero to help with fatigure....and, on page 29 of his "Diagnostic Hints and Treatment Guidelines, Dr. Burrascano recommends NT Factor:

www.ilads.org/lyme/B_guidelines_12_17_08.pdf

"8. NT-FACTOR
This product addresses the mitochondrial damage thought to underlie the metabolic dysfunction associated
with chronic diseases which, in patients with tick-borne illnesses, is manifest by fatigue and neurologic
dysfunction. It is the single most reliable agent I have found that can give noticeably increased energy levels.
When supplements known to support neurological function are added (see below), improved cognition and
memory often result. Effects will be noted in two to three weeks. It also contains high quality prebiotics and
probiotics. Available from Researched Nutritionals."

The stuff is expensive and I only took it in the recommended doses for two months. While I didn't have severe fatigue, I do feel back to my pre-Lyme energy level - yay :)

Hope you feel better soon!
Posted 11/24/2015 2:03 PM (GMT 0)
Me again

happyjo just shared a great link about NT Factor on another thread (it appears others have recommended a different brand and the link is to that brand's site which explains how the stuff works).

www.propax.com/how-it-works/
Posted 11/24/2015 4:57 PM (GMT 0)
Wow. Thanks for the great information everyone!

My adrenals have been tested (multiple times) and are functioning normally. I do have hyothyroid and take 30mg Armour daily.

I will look into Ashwadandha standardized extract. My dad just started taking this for his low energy (non Lyme related) and seems to have noticed a bit of a change. Also, NTFactor sounds like a good idea.

Man, this is so confusing though. How do you really, really know what's helping or hurting if you're on soooo many things at once. I do like the idea of stopping everything for a week and then maybe adding in some different supplements one at a time to see if I notice any positive changes.

I love the job I have right now, however, never thought that it may still be too much for me to handle. I basically stopped working in Oct 2012 and started again 1 day/week October 2013. I have since moved and found my perfect job.....I may be able to cut back just a little bit more. That may be a conversation I have with my boss in the coming weeks.

Regarding the Beyond Balance products, I can't really say they work well or don't work well because I have never noticed a difference. Sad, huh? I do know that they are quite expensive! NotQuiteAntonio, I wish I had a better answer for you....

Lastly, I really only have 2 symptoms left (down from chronic pain -- everywhere, brain fog, memory issues, insomnia): fatigue & occassional bathroom problems (don't want to give TMI....but you can figure it out). Is this chronic herxing????? I finished abx in April of this year.

Thank you all! I'll report back again... :-)
Posted 11/24/2015 6:30 PM (GMT 0)
Since people mentioned adrenal function, would someone kindly tell me what tests are normally run? I am having doctor trouble and am trying to figure out some things on my own.

One other thing, did you ever have an EBV panel done? I had never had one but my husband had been diagnosed a very long time ago. At the time the doctor said there was no reason to test, I would come back positive as well. Recently, the LLMD I saw ordered the test and it came back lit up like a Christmas tree. Everything I read said that when treating Lyme it could reactive the EBV. However, I wasn't able to find anything that said how it should be treated.

Any ideas anyone?
Kim
Posted 11/24/2015 7:19 PM (GMT 0)

gkamom said...
Since people mentioned adrenal function, would someone kindly tell me what tests are normally run? I am having doctor trouble and am trying to figure out some things on my own.

One other thing, did you ever have an EBV panel done? I had never had one but my husband had been diagnosed a very long time ago. At the time the doctor said there was no reason to test, I would come back positive as well. Recently, the LLMD I saw ordered the test and it came back lit up like a Christmas tree. Everything I read said that when treating Lyme it could reactive the EBV. However, I wasn't able to find anything that said how it should be treated.

Any ideas anyone?
Kim

I keep reading that the 24-hr saliva test is the best one for adrenals. For the life of me, I can't remember the lab that offers it without a prescription. Hope someone chimes in on that.

Traveler successfully treated her reactivated EBV (a few times) with L-lysine.
Posted 11/24/2015 7:43 PM (GMT 0)
"Lastly, I really only have 2 symptoms left (down from chronic pain -- everywhere, brain fog, memory issues, insomnia): fatigue & occassional bathroom problems (don't want to give TMI....but you can figure it out). Is this chronic herxing????? I finished abx in April of this year."

You stopped antibiotics even though you still had active symptoms left? Are you taking an herbal protocol now?

You do know that treatment must continue until active symptoms are gone - plus a couple of months?
Posted 11/24/2015 7:49 PM (GMT 0)
Stacygar - Have you had your thyroid checked - with the FT3 and FT4? If so, where are you - you need to be in the top end of the ranges.

gkamom - I have used ZRT Labs - I'm from Canada - and we don't have a lab that I'm aware of to do this 24 hour saliva test. I used it to test my Estro, Proges, Test. levels a couple of times.
I'm pretty sure i just ordered the test, did the test...sent it back and they mailed me the results...no Dr. necessary.

You need the 24 hour adrenal test - I believe you spit in the tube 4 x day - that way if your total cortisol is high or low - you will also find out when. There is different outputs for different times of day (ie - more in the wee hours of the morning - to wake you up, and lower in the evening - to allow you to sleep)
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