How do you deal with the chronic fatigue

[JayCS]

Do you think the Methylation part is important, and is that the one by Dr. Harris? I read about methylation and its positive impact on biochemical reactions in the body. The Acetyl L-Carnitine I have doesn’t mention methylation.

"Researching" this showed that whilst you are right that "methylation" is "good" for our bodies,
this is just part of a sort of product/brand name - you can get a "Methylation Essentials" version of B-vitamins and of melatonin.
These don't seem to be by the same company at all and I can't find this exact product anywhere, not on European nor on US-amazon.
But I'm pretty sure "Methylation Essentials" is just a flashy way of claiming that the product is a good one, doesn't seem to be a brand name.
I've had especially good and especially bad experiences with such flashy names, not much in between, so this must be "especially good".
Just I can't find it...

 

[LolaMerle]

JayCS: You’re right. I couldn’t find it either, until I then googled Dr. Harris after seeing his name by Methylation Essentials. Here in the US I’d rather use Amazon because with prime they deliver so quickly, but I couldn’t find any L-Carnitine related to Methylation - only B vitamins and melatonin, like you said. So I think I will pick a brand that I’ve used before, like Thorne, if they have the Acetyl L-Carnitine.

 

[sunkacola]

Do you think the Methylation part is important, and is that the one by Dr. Harris? I read about methylation and its positive impact on biochemical reactions in the body. The Acetyl L-Carnitine I have doesn’t mention methylation.

Yes, it's that one. Dr. Harris. And the Methylation I think is just part of the name of the company. And I do strongly recommend that company because it is one of those things that has a lot of scams out there and you need to know the company to avoid paying for a fake.

 

[JayCS]

650mg per day of the ALA and 1000mg per day of the ALC

Hi Jemima - hope you're OK-ish?

Have you got the R-type of ALA? If you have, and still feel 650mg is a good amount, I spose I might want to double my ALA to 2x.25g....
Similar CoQ10: I'd doubled it for histamine, but forgot ubiquinol is much more bioavailable, so my 2x.1g ubiquinol may be 2x.5g ubiquinone.
ALC I was taking 3x.5g and then swapped to 3x1g of the much cheaper L-carnitine, since I need it more for body than brain fatigue.

I now always study all the contents and winnow out everything with additives, look for specialities, then work out the price per g.
Last night I took an older cheap product of NAC where I obviously hadn't done so.
It caused GI problems and whaddaya know: The filling was ("slightly") laxative and the capsules contained 5 additives...
(I'd ordered it without thinking cos I'd had help & no problems with the pure powder of the same company, so I'm resorting to a rest of that.)

Spoiler: Prices of my "best products" (ALC, LC, R-ALA & both types of CoQ10)

If anyone wants examples of prices (this is the price for highest quality for best money where I am):
On ALC I spent 20€/m, on LC 6€/m (powder, self-encapsulating),
on R-ALA 12€,
on CoQ10 ubiquinol 25€ now for 200mg, normally 12,50€ for 100mg per day,
if I'd taken my ubiquinone 30mg(!) 17x per day to get up to 500mg, it'd have cost 53€/m, another product 100mg 5x per day'd've paid 30€/m. However "even" Teitelbaum says 100-300mg is enough... And ubiquinol seems better value for money...

Since going up to 30 supps Dec & Jan for fibro, plus jaw inflammation, lipids, histamine, I'm spending >300€/m on supps. *sigh*
Didn't think I'd ever go that far down that route. But I'll be assessing their effect on jaw & lipids soon, so that might reduce it again.
And it's a question of priority - I don't need to spend money on much else and it's making a great deal of a difference.

 

[LolaMerle]

By the way, Jemima, thank you so much for your responses to my questions. I hope you are feeling better!

 

[LolaMerle]

Well, now I’m worried about “serotonin syndrome” after I read that Acetyl L-Carinitine raises serotonin levels. I also take Cymbalta (for neuropathy) and trazodone (100mg) for sleep. Those also raise seratonin levels. I think that ALA also does that. I’m going to send a message to my doctor that suggested the ALC and ALA and make sure she noticed the prescription drugs I take that affect serotonin levels, but I think I’m going to cut back on the Cymbalta from 120mg to 60mg. My goal is really to take less prescription drugs and try to deal with all this via other means, but I also know that I might actually need to keep taking Cymbalta and Lyrica, and trazodone really does help me sleep.

Can anyone comment on the possibility of serotonin syndrome when adding ALC and ALA to Cymbalta and trazodone? The symptoms of serotonin syndrome are scary! I know a lot of this is trial and error, but seizures and death for the symptoms do make me pause and wonder. But after reading about the benefits in many articles of ALC and ALA, I really do want to try them, especially ALC for fatigue.

 

[JayCS]

Can anyone comment on the possibility of serotonin syndrome when adding ALC and ALA to Cymbalta and trazodone?

Hmm... I've had a slight quite a bit of serotonin syndrome once or twice 3-4x when overdosing GABA to find the right dose, so I know what to watch out for, esp. as my focal seizures come up then (which isn't that bad, but I do try to avoid it). However I balance it out by increasing dopamine (the sort of "opposite") via theanine (balances both) and glutamine (increases dopamine). GABA raises serotonin much more than ALC and ALA do.
I'd suggest just to go slow, i.e. start small (opening capsules), but maybe try adding these two. No way will you get full seizures or die from the small amounts these supps increase serotonin in comparison to how the meds do! I'd watch for increase in blood pressure or heart rate, measure it continually, and anything else strange. I doubt any docs will give a reliable answer on this one, but maybe a little bit of guidance, if you're lucky, or the assurance.
I'm also curious if anyone takes meds and these supps. I think I was taking a vitamin/mineral protocol (incl. CoQ10, but not ALA or ALC yet) whilst taking amitriptyline, but there again it was that that gradually but greatly increased my seizures, not the supps.

 

[LolaMerle]

You’re right about asking the doctor. I can already hear her telling me that it isn’t a problem. Most doctors don’t want to hear what you read online. After she diagnosed fibromyalgia, I recently asked my doctor if any of the MANY blood tests I have taken recently would rule out anything like lupus or MS (which I learned would not), and I specifically listed the similar symptoms. Her response was that she wouldn’t be concerned about either one because I don’t have the symptoms. (Huh?) The only symptom that isn’t similar is I don’t get the Lupus rash. I actually don’t think I have either one, but I wanted to ask about it.

Anyway, back to the topic (sorry to digress): thank you for the comments on the serotonin issue. I am going to see if I can take just 50mg of Trazodone and still sleep okay. I’m hesitate to add any more supplements besides ALC and ALA right now because I take so many already, but I’ve made note of the theanine and glutamine. I’ll watch for negative reactions. I feel more assured that I won’t just have a seizure and die - that’s always a good thing!

 

[JayCS]

Her response was that she wouldn’t be concerned about either one because I don’t have the symptoms. (Huh?)

Hehe, in a similar vein the professor in my rheum./fibro clinic when I asked about the Sjögren's suspicion of my centre for rare diseases said: No, I don't think so, none of our tests have confirmed it, and besides: It won't make a difference (and me worrying about 10% cancer). Like you, I didn't really think so either and it hasn't made a difference since I've had to learn to treat each symptom singly anyway.
And my first rheum... first excited by the prospect of me probably having ankylosing spondylitis (AS) was disappointed when the results were negative and when I asked about the fibro suspicion just said I didn't look it and sent me to neuro & endocrine. (The 2nd one had an easier job when those results also came back negative, and the tender points worked...)
Yeah, they have a tough job deciding when to jump on something and when to try to stop us from worrying about all sorts of ideas we have....
But as a recent study about this said: Docs need to get used to the fact that their diagnosis decisions aren't proven as particularly good and thus to ask and listen to us more.
(BTW I've edited the first line of my post above a bit, I'd played the amount down a bit too much.)

 

[Jemima]

Well, now I’m worried about “serotonin syndrome” after I read that Acetyl L-Carinitine raises serotonin levels. I also take Cymbalta (for neuropathy) and trazodone (100mg) for sleep. Those also raise seratonin levels. I think that ALA also does that. I’m going to send a message to my doctor that suggested the ALC and ALA and make sure she noticed the prescription drugs I take that affect serotonin levels, but I think I’m going to cut back on the Cymbalta from 120mg to 60mg. My goal is really to take less prescription drugs and try to deal with all this via other means, but I also know that I might actually need to keep taking Cymbalta and Lyrica, and trazodone really does help me sleep.

Can anyone comment on the possibility of serotonin syndrome when adding ALC and ALA to Cymbalta and trazodone? The symptoms of serotonin syndrome are scary! I know a lot of this is trial and error, but seizures and death for the symptoms do make me pause and wonder. But after reading about the benefits in many articles of ALC and ALA, I really do want to try them, especially ALC for fatigue.

Hi LolaMerle,

I hadn't thought about that as a risk, but yes, reading about it just now, it perhaps would pay to check in with your doctor and proceed with caution. Apparently, in lab tests on mice, ALC increased serotonin and norepinephrine levels, which are the two neurotransmitters targeted by Cymbalta. Serotonin syndrome is indeed scary, so do be a little careful - I think JayCS's advice above sounds very wise!

I'd also perhaps keep in mind that Cymbalta is notorious for withdrawal symptoms (not everyone experiences this, but I certainly did) and so keep in mind that if you reduce that while introducing something else new, it might be hard to identify which substance is causing what!

I'll also add that if you want to lower your Cymbalta dose but find that halving it leaves you feeling rough, you can taper more slowly by popping open the capsules and removing some of the tiny balls inside. I literally counted them out to get off that drug gradually!

Very good luck to you, whatever you decide to do.

 

[Jemima]

Hi Jemima - hope you're OK-ish?

Have you got the R-type of ALA?

Hi JayCS,

"Ish" is about right I'm getting there, but frustratingly fell off the deep end - so I'd say I'm part-way up the pool, feeling a bit soggy, but on track to climb back out again!

How are you? How are you feeling these days - after the trouble you were having after your shot? I really hope things have improved and that you're getting through the cold months OK.

I have no idea what type of ALA this is - it doesn't say. I'm taking Nutravita, which is a UK supplement brand - it's about €19 for 120 servings. Cheap!

 

[sunkacola]

I take Trazadone, Bupropion, and L-Carnitine, no bad effects at all. I think it takes a pretty high amount to get to the point of causing serotonin effect, and you would know if you were starting to develop that because some of the symptoms would appear. It is not dangerous if you handle it right away. Additionally, pharmacists in the US are required to know all of the medications you are taking and to make sure that you are not taking anything that would cause a drug interaction, so as long as you have told both your doctor and your pharmacist all the medications you take, it is unlikely that both of them would overlook something that would cause a drug interaction. I always get all my medication at the same pharmacy to make sure they have all the information. As for the ALC, I suggest starting with a small dosage and going up from there.

 

[LolaMerle]

Instead of taking two 60mg of Cymbalta last night I took one. I also only took one 50mg trazodone to see if that affected my sleep, and it didn’t, which is great. Will see how the lower amount of Cymbalta affects me. I feel better (in my head at least) that I am lowering some of the prescription drugs, but have to keep a good watch on whether or not my feet start tingling and feeling numb, which will tell me I might need to up the Cymbalta again, but will start the little ball “counting” instead of adding back a full 60mg. I am going to keep taking Bupropron for now because, strangely enough, it is the only thing that has helped me with IBS. When I forget to take it I have IBS flare-ups.

I am 68 and have seen prescription drugs being added a little more each year, and I really don’t want to keep that cycle going. I’m sure that’s nothing new to you, and other members here, so I know you all understand that. But I do understand tapering off is important and also that some prescription drugs might be necessary. I am also tapering off, very slowly, the dosage of 2 hydrocodone a day which I have taken for about 7 years for pain. After the fibro diagnosis, I realized that even though it has been my savior from some major pain in my neck and upper back, it isn’t my friend in the long run. No withdrawal symptoms from that. It’s just difficult because I’ve relied on it for so many years that part of me doesn’t want to give it up.

Thank you all for the advice! It’s very much appreciated.

 

[LolaMerle]

I take Trazadone, Bupropion, and L-Carnitine, no bad effects at all. I think it takes a pretty high amount to get to the point of causing serotonin effect, and you would know if you were starting to develop that because some of the symptoms would appear. It is not dangerous if you handle it right away. Additionally, pharmacists in the US are required to know all of the medications you are taking and to make sure that you are not taking anything that would cause a drug interaction, so as long as you have told both your doctor and your pharmacist all the medications you take, it is unlikely that both of them would overlook something that would cause a drug interaction. I always get all my medication at the same pharmacy to make sure they have all the information. As for the ALC, I suggest starting with a small dosage and going up from there.

Thanks, I will mention this to my new primary care doctor because she isn’t the one that suggested the ALA and ALC. I think that was the physiologist, and of course there’s no record of my taking it because it isn’t prescription.

 

[sunkacola]

Thanks, I will mention this to my new primary care doctor because she isn’t the one that suggested the ALA and ALC. I think that was the physiologist, and of course there’s no record of my taking it because it isn’t prescription.

Which is why it is important to tell your doc and your pharmacist about the L-carnitine.
Mine was suggested by my wonderful chiropractor, and has been a great help to me, but whenever I am offered a new medication I mention it so that they can take it into consideration.