Author Topic: Supplements: the good, the bad, the ugly  (Read 497 times)

Maria3667

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Supplements: the good, the bad, the ugly
« on: February 09, 2018, 04:18:40 PM »
OMG, I've tried so many supplements it's baffling. The small fortune I've spent over the last 20 years could easily have bought me a posh car. Many supplements turned out to be utterly useless against Sjogren's, so I'll narrow it down to the ones I do find useful.

Top 7 for muscle and joint pain:
1) curcuma / tumeric: very effective, almost from the onset. Side effect: anxiety.
2) green lip Mussel extract: very effective from day 1. Side effect: weight gain.
3) nigella sativa: effective after few days. Side effect: severe heart burn/acid reflux.
4) MSM: effective from the onset. Side effect: mood dampening progressing into depression.
5) green tea extract: effective after approx. 2 days. Side effect: insomnia, itchy stools.
6) glucosamine: effective within a few days. Side effect:  depression and moodiness.
7) Boswellia: MOST effective almost immediately. Side effects: aggravation/irritation.

Top 5 against typical Sjogren's issues:
1) 3.000 mgs vitamine C: helps keep inflammation at bay. No side effects.
2) 750 mgs magnesium oxide: effective against constipation. No side effects.
3) 3.000 mgs fish oil: effective against dry skin, depression and insomnia. No side effects.
4) 2.000 mgs evening primrose oil: effective against wrinkles on toes. No side effects.
5) zinc lozenge: effective against mouth sores/ulcers. No side effects if taken on full stomach. Otherwise: nausea.

Edited on Feb. 11th to add glucosamine and Boswellia.
« Last Edit: February 11, 2018, 12:39:16 AM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Joe S.

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Re: Supplements: the good, the bad, the ugly
« Reply #1 on: February 09, 2018, 05:09:45 PM »
A good source for research on this and other topics is Lef.org  Life extension does have their own supplements that can be expensive. Their research is top notch with many medical scientific studies available. I also use webmd among other web sites.

Tart cherry Extract, Bosweillia and Curcumin I use for gout and arthritis since the two are related. One helps reduce Uric acid a major contributor to Arthritis, One tells your immune system not to attack the arthritis in your system and make it worse, the last one reduces the inflammation found in arthritis.

D3 we need to replace what our bodies no longer make from sunlight.

I take 5600 units of omega3 to lower my cholesterol.

My theory on auto immune diseases led me to the next to items. Acetyl-L-Carnitine repairs damage to your mitochondria DNA. R-Lipoic Acid removes the debris from the repair so they do not reinfect your cells. It does take a month or two to have enough relief to feel better. (I believe that nano-bacteria causes auto immune diseases).

I use carrot Juice to replace endorphins in my system. I use reflexology to send endorphins to where I hurt. I use Reiki and Meditation to help me mange the pain I have from multiple sources. I teach Reiki, Reflexology, and an easy meditation.

I use CBT (Cognitive Behavioral Therapy) to manage anxiety and depression that comes with these conditions. A very good book on the topic is "Feeling Good" by David Burns.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

araminta

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Re: Supplements: the good, the bad, the ugly
« Reply #2 on: February 10, 2018, 03:31:39 AM »
It's always interesting to hear what peope find helpful.   Maria:   I didn't know turmeric could cause anxiety, in fact I thought it did the opposite?
Dry eyes (MGD),dry nose, dry mouth, labyrinthitis, rashes, dry skin, mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative and no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes.

Joe S.

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Re: Supplements: the good, the bad, the ugly
« Reply #3 on: February 10, 2018, 06:48:19 AM »
Anti-anxiety and depression drugs can cause the aiments they are suposed to treat.

Before trying any drug or supplement, web search for counter indications, side effects, and drug interactions.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve, cistanche
Reiki, reflexology, meditation, electro-herbalism

Maria3667

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Re: Supplements: the good, the bad, the ugly
« Reply #4 on: February 11, 2018, 12:49:31 AM »
@Araminta: I thought so too, until I tried it. Anxiety seems to be my hang up with many supplements, maybe due to interaction with thyroid meds?

@Joe: thanks for your suggestions, I tried many of them. Even had a weird side effect to carrot juice: horrendous diarrhea. What's up with that? Can't remember if I took Acetyl-L-Carnitine, tried so much stuff it's a haze, unless I write it down.
I'm aware of Left.org, been a regular visitor for many years. Thanks for bearing with me!
« Last Edit: February 11, 2018, 01:24:45 AM by Maria3667 »
50. Lyme's (1998), Sjogren's (2003), hypothyroidism (2004), osteoarthritis (2016), DES-daughter, GAD. Pilocarpine, natural thyroid hormones, 25mg quetiapine, low dose testosterone, 2.5 mg dhea, supplements. Endometriosis, cherry angiomas, macules. Allergies: nickle, methylisothiazolinone, latex

Nomad

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Re: Supplements: the good, the bad, the ugly
« Reply #5 on: February 11, 2018, 03:21:37 AM »
I swear by Vitamin D 3. I have had mild depression and this stuff takes about 90 percent of it away. Also of  great help is my B Complex.

I feel strongly that Oil of Oregano is a blessing.
We use it for cold prevention.
Our son is a teacher and would get several bad colds a year.
Now he takes it if he sees a cold or two in his classroom or other teachers getting sick. He currently is getting anywhere from zero to one minor cold a year.
I was getting several bad sinus infections a year. I?m now getting one minor one approx every 18 months.
The improvement is huge.
« Last Edit: February 11, 2018, 03:23:20 AM by Nomad »
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

Carolina

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Re: Supplements: the good, the bad, the ugly
« Reply #6 on: February 14, 2018, 10:06:34 AM »
Great topic!

I've been taking many supplements, and have no idea if they really help or not. 

Last week I saw a Dr. at the Duke Geriatric Center.  She spent 2 hours with me and also did a careful evaluation of my supplements and asked me to try discontinuing most of them, one at a time.

The ones that my doctors asked me to me take (Fish Oil, Iron) and D-Mannose which is the magic supplement that keeps UTIs at bay: those I will keep.  The geriatrician also suggested that I keep the Vitamin D, Potassium, and Magnesium supplements.  And of course I will keep my prescription medications.

Since I prepare my medication boxes for 6 weeks at a time, I am waiting until the next time I prepare my boxes to begin my program to discontinue many supplements.

I am reluctant to let any of them go.   But I am also interested to see what, if anything, happens when I stop any/all of them.  Perhaps I won't 'feel' any different, but perhaps some of the good being done I cannot actually sense?

Here are the supplements I will discontinue one at a time:

Acetyl-L Carnitine
Alpha Lipoic Acid
Copper (plans to stop to and have blood rechecked in a month)
DHEA
NAC
Palmitoylethanolamide
PQQ
SAMe
Cistanche
Ubiquinol
Beta Carotine
Vitamin E

I will keep you all posted on how this goes forward.

Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

Sooki

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Re: Supplements: the good, the bad, the ugly
« Reply #7 on: February 15, 2018, 09:07:09 AM »
Thanks for this list.  I had a bad experience with acetyl L carnitine.  It indeed gave me more energy, but it had bad effects on my mood - irritable and angry.  I finally figured it out.  the extra energy wasn't worth it.

I now have a set of supplements that agree with me.  I know what each one does for me - except alpha lipoid acid and that just seems correlate with me feeling better! Always looking for more.

I also looked at your list of allergies in your signature.  The rash shown for methylisothiazolinone allergy online looks a lot like a mystery rash my sister started having.  So, she has a new thing to try avoiding.

It's an ongoing process isn't it?
68 yo, Sjogren's, Lupus, Hashimoto's, fatigue, MGUS, peripheral neuropathy, ocular rosacea
Plaquenil, CellCept, Synthroid, Atorvastatin, Xiidra, D3, biotin, B12, ALA, DHEA, Ubiquinol, CPAP, black current seed oil, D-mannose, Paleo AIP, fish oil, eye ice packs, Cliradex wipes

jazzlover

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Re: Supplements: the good, the bad, the ugly
« Reply #8 on: February 15, 2018, 03:08:05 PM »
I've taken curcumin for about 15 years. No anxiety here.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

jkcc2323

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Re: Supplements: the good, the bad, the ugly
« Reply #9 on: February 16, 2018, 08:38:53 AM »
Great topic!

I've been taking many supplements, and have no idea if they really help or not. 

Last week I saw a Dr. at the Duke Geriatric Center.  She spent 2 hours with me and also did a careful evaluation of my supplements and asked me to try discontinuing most of them, one at a time.

The ones that my doctors asked me to me take (Fish Oil, Iron) and D-Mannose which is the magic supplement that keeps UTIs at bay: those I will keep.  The geriatrician also suggested that I keep the Vitamin D, Potassium, and Magnesium supplements.  And of course I will keep my prescription medications.

Since I prepare my medication boxes for 6 weeks at a time, I am waiting until the next time I prepare my boxes to begin my program to discontinue many supplements.

I am reluctant to let any of them go.   But I am also interested to see what, if anything, happens when I stop any/all of them.  Perhaps I won't 'feel' any different, but perhaps some of the good being done I cannot actually sense?

Here are the supplements I will discontinue one at a time:

Acetyl-L Carnitine
Alpha Lipoic Acid
Copper (plans to stop to and have blood rechecked in a month)
DHEA
NAC
Palmitoylethanolamide
PQQ
SAMe
Cistanche
Ubiquinol
Beta Carotine
Vitamin E

I will keep you all posted on how this goes forward.

Elaine

Did your doctor advise you to discontinue these supplements because they don't think they do anything, or because they think they are harmful?

Carolina

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Re: Supplements: the good, the bad, the ugly
« Reply #10 on: February 16, 2018, 10:42:57 AM »
Dear jkcc,

Both, I think.  Actually she did not comment on the efficacy of the supplements, since I have some NIH documentation for all of them (although some of the research results are only on animal models, which may not transfer to humans at all!).  She is far too wise to make judgements about medications or supplements.  A good doctor will not jump into that discussion easily.

I think, rather, that she knows that we each react differently to medications and supplements.  Her concern is:

1.  I take a lot of supplements, and have taken many of them for a very long time.

2.  We are all 'better off' without supplements (or even medications) that may be doing us no good, and may be complicating the effectiveness of other supplements and medications.

3.  I am now turning 76 in March, and all medications and supplements becomes more problematic as we get older.

4.  The only way to find out what is working and what is not working (whatever 'working' may be) is to discontinue and see what happens.
 
All that said, I do not believe that discontinuing any supplement for ONE week is an adequate trial of the effectiveness.  I rather think I should discontinue the first supplement for ONE MONTH, evaluate the results.

If I do not notice any adverse effect from discontinuing the first supplement, I will then discontinue the next one for one month, and so on.

I know she wants a more rapid scale-down of my supplements.  But it doesn't seem like a more rapid scale-down makes sense to me, nor is there any pressing reason to do so.

I recently had to discontinue my beloved Cymbalta due to horrible side effects (shaking of my limbs, and collapse to the floor!).   I have also had to slow down the increase of a new medication (Naltrexone) due to difficult side effects (which are abating at the lower dose). 

I am, as are most of us, very compliant with taking medications (both dosage and schedule of dosage). I do have a hard time evaluating the effectiveness of my supplements (except D-Mannose which works magnificently to stop UTIs, and Iron for anemia).  So I don't think one week is long enough to know anything.

Since this is MY CHOICE, I will give each supplement one month to show me if I am 'missing' it.

Hugs,  Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

jazzlover

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Re: Supplements: the good, the bad, the ugly
« Reply #11 on: February 16, 2018, 01:52:23 PM »

3.  I am now turning 76 in March, and all medications and supplements becomes more problematic as we get older.


Absolutely correct.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Deb 27

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Re: Supplements: the good, the bad, the ugly
« Reply #12 on: February 18, 2018, 02:21:28 PM »
This is a great topic. Years ago, I took no supplements or vitamins. Then an Optometrist recommended Maxi Tears to me. I noticed I felt better, ached less when I took it. Since then, I've b been reading a lot about Functional Medicine and auto immune disease so I am also trying out Quercetin, L-Glutathionne. I take iron for low ferritin, Vit D, and d-mannose. Because I was having such bad luck and side effects from antidepressants, my doctor put me on SAMe and another type of omega oil. It's been a few days and I think I can tell a difference. I  believe in getting to the source of the problem and believe supplements help with that. However, they come with side effects and are not strictly tested so you have to be careful of your source. Sometimes when they test supplements, they find no active ingredients that they claim to be in there and that worries me. I get  most of mine from my Dr. I hope that solves the problem.  Oh, and from time to time I take probiotics. Large doses give me diarrhea.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  prozac, Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, alpha lipoic acid, multi vitamin.