Hello folks,
First i would like to thank all of you for sharing help in this forum.
My lovely mommy is Sjogren patient, 58 years old now and diagnosed 3 months ago. It is secondary type most probably with a mixed connective tissue disease component which is non clear yet although It could be an overlap syndrome.
Her family history (her grandfather suffered from atherosclerosis, her father with a-fib arrhythmia and mild fibrotic generations at lungs, and never smoked aunts with severe diabetes and arterial clogging) make us suspicious for future treats and we try to stay careful. Hope all goes easy just like now..
By the way i am a polymer chemist and we live in Turkey, Istanbul.
Since the early diagnoses, i am closely taking care of her disease and trying to learn and understand any information which can make her life easier and stay pro-active.
I read every single post on this forum, one by one, without skiiping any comment and searched as much as i can on the web for information. I think i need to thank again to all of you because i learned a lot from this forum.
Rheumatology is unfortunately not a very old study in my country and medicines are just symptomatic just like it is everywhere and global availability and awareness can sometimes be limited in such cases. So patient stories, successful medications, tips and common treatments was very important for me that i tried to collect and research one by one, needed to confirm each statistically to prevent any wrong suggestions etc..
And now after all of my researches are done and archieve is ready to be shared for help; I am releasing this post to support amateurs and newbies regarding terminology. I hope this study helps to patients.
I wish health to all of you friends and please just ask if you have any question.
I am also adding the archive in excel attached.
Best regards,
Hasan
***Please use the excel for notes in detail***
| # |
Target |
Product |
| 1 |
Lungs - Fibrosis |
Lepidium sativum |
| 2 |
Cardiovascular health |
green tea |
| 3 |
Cardiovascular health - Romatoid Artrit |
fish |
| 4 |
Cardiovascular health - Rheumatic imflamation |
Onion |
| 5 |
Rheumatic imflamation - Joint pain |
Banana (Potasyum) |
| 6 |
imflammatory rheumatism |
avucado |
| 7 |
Cardiovascular health |
almond/hazelnut/walnut/dried grape |
| 8 |
Cardiovascular health - Rheumatic imflamation - Scleroderma |
broccoli/cabbagea/cauli |
| 9 |
Cardiovascular health - imflammatory rheumatism |
turmeric |
| 10 |
Cardiovascular health - dry mouth |
cinnamon |
| 11 |
dry mouth |
coconut oil |
| 12 |
dry mouth (throat-tract) |
Pineapple |
| 13 |
imflammatory rheumatism |
Celery |
| 14 |
Cardiovascular health - imflammatory rheumatism |
Red beet, garlic, olive oil, turmeric, ginger, parsley, oat |
| 15 |
Tips |
Decrease |
| 16 |
Tips |
İncrease |
| 17 |
Cardiovascular health - imflammatory rheumatism |
Mineral Water |
| 18 |
Cardiovascular health - dryness |
Fish oil (omega 3) |
| 19 |
dry eye |
Sea buckthorn oil (omega 7) |
| 20 |
Cardiovascular health - dryness |
flaxseed oil (omega 3) |
| 21 |
Rheumatic imflamation - Scleroderma |
Cure Coctail |
| 22 |
Rheumatic imflamation - Fibromalgia |
Cure Coctail |
| 23 |
Rheumatic imflamation - Romatoid Artrit |
white mulberry |
| 24 |
Lungs - Fibrotic Generations |
Locust (Ceratonia siliqua) |
| 25 |
Rheumatic imflamation - Romatoid Artrit |
Rose hip |
| 26 |
Rheumatic imflamation - Romatoid Artrit |
nettle(Urtica dioica) |
| 27 |
Rheumatic imflamation - Lungs |
Marshmallow Root (Althaea Root) |
| 28 |
dry mouth (throat-tract) |
Marshmallow Root (Althaea Root) |
| 29 |
dry mouth (throat-tract) |
licorice root |
| 30 |
dry mouth (throat-tract) - Lenfoma |
NAC (N-acetyl Cysteine) |
| 31 |
Tips |
Traveling |
| 32 |
Tips |
Resting |
| 33 |
Tips |
Mucus (phlegm) |
| 34 |
Tips |
Advices |
| 35 |
Cardiovascular health - imflammatory rheumatism |
curcumin (turmeric yellow extract) |
| 36 |
Cardiovascular health - imflammatory rheumatism |
boswellia (frankincense) |
| 37 |
Cardiovascular health - imflammatory rheumatism |
willow bark |
| 38 |
Lungs - Fibrosys |
Oat straw |
| 39 |
Dry mouth |
gum |
| 40 |
Cilt kuruluğu |
Soap |
| 41 |
dry mouth (throat-tract) |
Exovac |
| 42 |
dry mouth (throat-tract) |
Salagen |
| 43 |
dry mouth (throat-tract) |
Common medications |
| 44 |
dry mouth (throat-tract) - ulcers |
Mouth ulcers (Candida Albicans) |
| 45 |
dry mouth (throat-tract) |
Mucinex 12 Hour |
| 46 |
dry mouth |
Mouthwash/rinse |
| 47 |
dry mouth |
toothpastes |
| 48 |
dry mouth |
Mousturizing sprays |
| 49 |
dry mouth (throat-tract) |
Saline Sinus Rinse and saline nasal spray |
| 50 |
dry mouth (throat-tract) |
Nasal Sprey |
| 51 |
dry mouth (throat-tract) |
toothbrush |
| 52 |
dry eye |
Drops, lotion, gel, ointment, Punctal Tear Duct Plugs, Scleral Lensler, Lacriserts (dissolvable cellulose) |
| 53 |
imflammatory rheumatism - RA |
Vitamin D |
| 54 |
imflammatory rheumatism |
Snovial Eklem İltihabı |
| 55 |
Sjogren |
Brain fog |
| 56 |
Mineral&Vitamin |
Sodium |
| 57 |
Mineral&Vitamin |
Magnesium |
| 58 |
Mineral&Vitamin |
Calcium |
| 59 |
Mineral&Vitamin |
D3 |
| 60 |
Mineral&Vitamin |
B12 |
| 61 |
Mineral&Vitamin |
magnezyum |
| 62 |
Mineral&Vitamin |
quersetin |
| 63 |
Mineral&Vitamin |
vitamin A |
| 64 |
Cardiovascular health - imflammatory rheumatism |
kombucha |
| 65 |
tips |
novel |
| 66 |
Diagnosis |
tests |
| 67 |
Diagnosis |
Connective Diseases |
37-Sjogrentipscommontreatments.xlsx (17.8 KB)
Hi Hasan
lovely to hear from you!
I taught in a turkish school (Biology Chemistry and Physics)in the UK for a few years and several of my ex pupils are still friends and come to visit. I am a biochemist with SS sero negative.
I am sorry to hear of your mother's condition and the family history you describe. It does seem to suggest a genetic component with some epigenetic modification perhaps.
I am going to study your excel file in depth and will come back to - I have spent 3 years researching and experimenting with "alternative therapies" so am well aware of current medical research in these areas.
I am very busy at present but I shall respond.
Thank you for sharing your ideas with us all :)
Fascinating File Hassan. I think I have a similar file somewhere in my piles of "stuff" I used to do pharmacological research. For a plastics guy I'm impressed. You understand why 80% or better of medication is based on "natural" materials herbs. supplements, foods etc. Determining what the active ingredients are that have an effect is the "easy part" determine the mechanism is where the challenge comes in.
Despite the fact we know what this stuff does, making it therapeutic is the next big challenge.
Dear Tj1 and Assybish,
I have read many of your older posts and have respect to your advanced knowledge. Thanks for sharing.
Actually the type of my investigation is not totally clinical or scientific. Its just a statistical documentary of experiences in one single place. It could be a a first sight road map for those people newly diagnosed and irrelevant to medicine and dont know where to start with. Most of the tips are just common to healthy living and not miraculous.
Dear Tj1, Its clear that today's science is just insufficient to understand immune system. For sure you know this article about new findings on immunity researchs, i wish new remedies comes from these; http://neurosciencenews.com/lymphatic-system-brain-neurobiology-2080/
We are trying to find a way out in the middle of something that no one knows. So i find it reasonable to stay on natural remedies and take benefits from positive science even it is small. Since the root cause is not known it is safe to relief symptoms with natural stuff and support.
I know there are people in this forum who takes relief from plaquenil but I am just questioning why i let my mother to use this thing that even doctors do not know how it helps. Please correct if i am wrong. This is a shame for doctors in my point of view...
I respect to patients suffering from severe conditions and don't have any other chance rather than shutting the eyes and sticking with failing medications. In turkish we have an idiom; one fall to the sea and hugg the snake..
Regarding the 3 different cure coctails on the excel file; they are adviced by a famous biochemist professor named "ibrahim adnan saracoglu" that i trust his remedies a lot. He never suggests magical active ingredients or chemicals to patients but just herbal teas and cocktails to amateurs.
Huggs to all of you,
Hasan
For me the key difference with conventional medicine is that anything I am prescribed has been through rigorous clinical trials and, as far as possible, the benefits and risks clearly identified and for anything which arises in use there are clearly defined reporting procedures which add to and enhance our understanding of these drugs. Medications are also manufactured to the highest standards.
Natural remedies, on the other hand, do not usually have any validated clinical trials or any other form of robust testing, efficacy or safety data behind them and can be positively dangerous as people can and do self-medicate or fall into the hands of unqualified and unscrupulous quacks. It shouldn't be forgotten that many conventional medicines have their origins in plantlife, so something is not necessarily 'safe' just because it is 'natural'. Similarly the standards to which natural treatments are manufactured or prepared ... well that can just be witch~doctory.
I am certain there is much yet to be discovered about the medicinal powers or otherwise of natural remedies as well as much more for the conventional medicine establishment to learn about auto-immune diseases. Personally I am very interested in the current research into the microbiome and epigentics. Somehow I think this will be where some of the next leaps of scientific knowledge are going to come from.
But you see, when you make an herbal tea, you have modified the ingredients, not so differently than extracting them in a laboratory. The question is then, how does the "tea" work. WE know less about the mechanism of base ingredients than we do the products we make from them. We know exactly what plaquenil does, we do not know how it does it. That would apply to anything if we take it far enough (not meaning to move from science to philosophy)
The thing is if I could paint myself purple, dance naked under a full moon while licking frog slime, I'd do it provided I had some measure of evidence that it would help.
As you know building a statistical base is far more complicated than check boxes and a survey.
Regarding Ibrahim Adnan Saracoglu, he has done brilliant work However his research of using broccoli against prostatitis has caused no small amount of problems in my household. I despise broccoli, my wife saw a monograph of his on the subject and I swear was putting broccoli in cookies to get them down me.
In bens friends we have an idiom as well: Fear the disease not the meds. make sure you don't deny your mom relief becaue of your own scientific "blinders" Thanks for the intelligent conversation.