13 replies to this topic

[kylyssa]

Supplements

ALCAR 500mg x 2 (cognitive function, brain damage)
Aniracetam 250mg (cognitive function)
Borage Oil 1g x 2 (Sjogren's Syndrome)
Centrophenoxine 250mg x 2 (cognitive function, lucid dreaming)
Choline Bitartrate 500mg x 2 (cognitive function, Sjogren's Syndrome)
DL-Phenylalanine 500mg (depression)
GABA 1000mg (auto-immune, anxiety)
Green Tea Extract 500mg (fatigue)
Holy Basil 450mg (inflammation, stress)
Inositol 500mg (depression, Sjogren's Syndrome)
L-Carnitine 1000mg (fatigue)
Multi-Vitamin/Mineral (the name escapes me......)
NAC 700mg (Sjogren's Syndrome)
Omega-3 1000mg x 3 (Sjogren's Syndrome)
Piracetam 800mg x 2 (cognitive function)




Medications

Centchroman 30mg x 1 weekly (birth control)
Deprenyl 10 mg (atypical depression)
Synthroid .175mg (Hashimoto's Thyroiditis)




I am a 36 year old female with Hashimoto's Thyroiditis, Sjogren's Syndrome, depression, brain damage, and questionable structural integrity (being nearly more able to list those parts never broken, cut, severed, or torn than to list those that have been) after multiple trauma incidents.

My aims are to tune up my brain and combat the symptoms of my autoimmune diseases and depression. Dietary and behavioural activities towards this aim are many and varied beyond my desire to list ATM.

[kylyssa]

Any suggestions?

[health_nutty]

ALA is an antioxidant that protects against free radicals produced inside the mitochondria. Many of us use ALA to counteract the possible increase in free radicals inside the mitochondria by ALCAR.

Also an adaptogen like Rhodiola or panax ginseng can help with fatigue.

[zoolander]

I am a 36 year old female with Hashimoto's Thyroiditis, Sjogren's Syndrome, depression, brain damage, and questionable structural integrity (being nearly more able to list those parts never broken, cut, severed, or torn than to list those that have been) after multiple trauma incidents.

Kylyssa I think you should be very careful with your supplement regime. You should be talking to your doctor. If your doctor is not well versed with the supplements then seek a second doctor who is. Considering your situation, taking supplements without the supervision of your doctor is dangerous.

And to the members who are considering giving advice, please do not recommend supplements as if this is a normal situation. This is NOT your average situation. To play doctor here is very dangerous unless you understand the finer details. For example you mentioned hashimotos throiditis. There different forms of hashimotos disease and hence different ways to treat the disease.

IMO the best way to handle this situation kylyssa and the members thinking of recommending supplements is to only provided information based on peer reviewed medical research with solid conclusive evidence that supports the use of the supplement under the above mentioned conditions. Then the reference paper should be printed and taken to your doctor for review.

NOTE: Your condition Kylyssa is most likely multifactorial and multi-system based. If you treat one situation you may actually aggrevate another. Please keep this in mind.

Edited by zoolander, 14 November 2006 - 12:12 AM.

[health_nutty]

Good point zoolander.

[Shepard]

And to the members who are considering giving advice, please do not recommend supplements as if this is a normal situation. This is NOT your average situation.

Word.

[kylyssa]

I am under the care of a physician, a rather open one at that. Since starting these supplements, particularly the NAC I have experienced significant, obvious relief of Sjogren's symptoms. We had been discussing punctal plugs in earlier visits but those don't appear necessary any more. Pretty much all of my various "dryness" issues have resolved to one degree or another since adding NAC.

We decided together against the vinpocetine and the hydergine prior to beginning to take this stack as she questioned the use of those vasodilators in someone who has had brain surgery. She supports the omega-3's, the NAC, and the multivitamin. Frankly, she sees most of what I'm taking as worthless but harmless. The only things she saw to be questionable were the nootropics, though her concern was regarding my desire for them rather than their effect - she seemed to find them harmless but thinks my motivations are faulty.

edit -
Options for treatment of Sjogren's Syndrome are treatments for the symptoms - eye drops, mouth sprays, artificial saliva gels, lozenges, vaginal lubricants, etc - things that require constant application or use for comfort. None of those things actually address the cause of the symptoms, the immune response. The only medical treatments to actually slow Sjogren's are immune suppression drugs and steroids plus for some reason Hydroxychloroquine, a member of the antimalarial family of drugs. These are pretty serious drugs which I don't want to take until and unless I absolutely have to.

As long as I "first do no harm" with supplements - I see no problem with making my own decisions regarding my own body and health. My survival has required an aggressive approach to my own medical care. I'm not a total babe in the woods regarding medications - I have several years of chemistry for the health sciences and biochemistry under my belt to serve as a platform for understanding my choices.

Edited by kylyssa, 14 November 2006 - 12:35 AM.

[zoolander]

It all sounds very promising. Recovery is a long road and you sound as though you have come a long way. That's awesome.

As long as I "first do no harm" with supplements - I see no problem with making my own decisions regarding my own body and health. My survival has required an aggressive approach to my own medical care. I'm not a total babe in the woods regarding medications - I have several years of chemistry for the health sciences and biochemistry under my belt to serve as a platform for understanding my choices.

That's all good but you have to understand that some people recommend supplements on these boards without having a good understanding. IMO, these people playing doctor can potentially do more harm than good.

Although you sound quite knowledgable about your situation I'm giving you the heads up that others may not be but freely recommend supplements like they are doctors/god. The truth of the matter is that you don't know who is who on these boards. This is the internet and all information should be double checked and treated with caution.

[kylyssa]

My information gathering process is a lot more complex than simply taking recommendations from some guy off an Internet discussion board as gospel.

However, tossing out questions can result in getting seeds that you may not harvest anywhere else. Whether those seeds will grow into anything helpful or are just bird-food is the question. For me, this is kind of like brainstorming. I ask for suggestions or read people's suggestions then if someone suggests something interesting I research it thoroughly, getting input from multiple sources including friends and health care providers as well as from publications.

In researching for anything (my fiction pieces, my factual articles, my personal health, etc) I read a quantity of pages which would surprise you. No single source is taken as the definitive truth.

However, I appreciate your concern.

[zoolander]

Cool. We know a little more about it all now kylyssa.

this comment

(my fiction pieces,

has often made me wonder whether there are members that come here and play out a certain character, scenario or ask particular question to get information to write a book

[kylyssa]

I have asked questions on other discussion boards to get information to write a novel. I didn't pretend to be someone else but I didn't give my reason for asking the question until I had a number of answers. I don't want people to tailor their answers to fit my needs.

And yes, should the book be published the contributors would be credited and their input not used without permission.

[Centurion]

I would write a book on you Graeme, it would be an epic tale of punk rock and academia. The adventures of the man who thrashes the metal on stage before testing his mettle in the lab. The bruce wayne of gerontology sharpens his pick and strokes the strings contemplating the battle with aging, that monstrous slow form of death so invisible to its victims.

[zoolander]

Sounds like an awesome book. I'll buy it!

[kottke]

Haha thats awesome (I cant quote your messages centurion)

Kylyssa-

I would also highly recomend adding R-Lipoic-Acid if you are supplementing with ALCAR. Particularly this Form. I cant recomend much other then that becuase of your complex situation but i will say that i have tried deprenyl in the past and it has worked pretty well for my depression. There is also a more advanced form of selegiline called rasagiline which is supposedly less toxic -as in less toxic metabolites and a "cleaner" feel to it. Hope this helps