Good reading. If someone has shared this already I apologize. Late night and I am trying to find a way to get healed from the mess in my body. I am believing that there is something that has to help us. Whew! Just breathe.
drhyman.com/blog/2010/07/30/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/#close
Angel
Thank you, Angel. Quite timely, your sharing this article. It seems to me my biggest problem remains inflammation.
I'm at the point of considering more than symptom treatment. That seems to be the persistent approach from my docs anyway, treat the symptoms but don't get to the root cause. I'm long past ready to explore alternatives.
Amanda
Thank you Angel. This is very informative and I have to ditto what Amanda said. Feeling that alternative therapies and healing may be the way to go as I'm coming to the end of the road with traditional medicine.
You are in my prayers Angel.
Grace and Peace to you.
~Andrea
Angel,
Excellent article/blog! Thanks for posting.
Imagine that... a doctor that believes in finding the cause and eradicating that, rather than just throwing medications (chemicals) at the symptoms. I am not knocking all medications as they do have their place in treating illness, BUT what has perplexed me is that doctors prescribe medications for SYMPTOMS but really go no further to look for the CAUSE of those sypmtoms. The patient ends up on the hamster wheel. As Dr. Hyman stated, medications have their place to calm the immune dysfunction, but then the doctor should delve into why the patient is having the adverse immune response and treat that.
The medical society and research seems more geared toward the pharmaceutical corporations than toward the patients and finding out WHY they are sick.
Looking forward to reading more of this doctor's blog! Wondering if others on the board have read any of his books?
sassygal (Gail)
QuoteBUT what has perplexed me is that doctors prescribe medications for SYMPTOMS but really go no further to look for the CAUSE of those sypmtoms. The patient ends up on the hamster wheel.
Yep, and that is precisely where I am - on a hamster wheel. Makes no sense, and when I look at the meds added the past 18 months, some have side effects that conflict with other conditions I am on meds to treat.
My PCP's response when I asked why is it some folks seem to have a lot more tests done (I notice that on the boards here) than ANY doctor has ordered on me (which is the bare minimum BTW) was "Well people with your complex medical situation usually spend a week at Mayo where all they do is run tests." I was dumfounded. Like someone on disability income only can AFFORD that???
So I am more than ready to seriously look into alternatives to the "status quo"...such as what IS the root cause rather than addi ng on more problems with yet more meds that cause even more problems.
Thanks for posting the link to the article. I agree with the others that it is a good article and hits the nail on the head.
I know we need some pharmaceutical meds but we also need to be looking at the causes and triggers as opposed to just treating the symptoms.
I do have wonderful doctors and I am on Plaquenil, but I have, so far, not taken them up on any of the symptom relief drugs (Lyrica, Cymbalta, and Tramadol as well as Lidocaine patches and Clonidine gel, and also Pilocarpine ) because those drugs have such bad side effects and I already have a lot of odd ball issues and symptoms that just pop up out of no where. I do not need any drugs that will exacerbate any of those many issues and symptoms that I already have. I know some people really need those drugs and others, so I am not knocking them, but I am not at that point yet and if I can find another way (supplements, diet, etc.) that will help, I would rather do that and avoid the side effects of those drugs.
Instead I am taking a lot of supplements (which I believe are definitely helping) and keeping an eye on my diet, activity and exercise level, sun exposure, moisture enhancement, and anything else that I find influences how I feel.
Thanks, again, for posting.
Jasper,
What is the best supplimant for inflamation?
Kimberly ..... Well, I am not sure what would be the best supplement for inflammation (from a scientific standpoint), but I do know that Curcumin is an excellent anti-inflammatory. The Curcumin has helped with my OA stiffness and joint pain, gotten rid of the Interstirial Cystitis (at least controls it so it does not bother me), got rid of the hot red lower legs, and got rid of the lower leg and ankle edema. And I am sure it was the Curcumin because, at that time, it was the only supplement that I had added. I had been taking the Vitamins for years and I added many of the other supplements later. So I am sure the Curcumin was what improved those particular symptoms.
I can list which supplements I take and the reason I take them. I did a lot of research on the web (at reliable web sites) prior to deciding which ones to take:
Inflammation:
Curcumin: Anti-inflammatory
Boswelia: Anti-inflammatory
Flor-assist Probiotic: Anti-inflammatory (as well as balance the gut and all that entails)
Wholemega Whole Fish Oil (Whole Omegas ? 3, 5, 6, 7, 8 and 9?s) (I get this from New Chapter): Anti-inflammatory as well as other benefits
CoQ10: Antioxidant (also promotes mitochondrial growth)
N Acetyl L Cysteine: Antioxidant (also used in Sjogren's)
SAMe: Used for OA and Depression
R Lipoic Acid: Antioxidant; used for Peripheral Neuropathy; also decreases serum glucose
Acetyl L Carnitine: Used for Peripheral Neuropathy, for memory, and for Depression
Krill Healthy Joint Formula: Joints - decreases stiffness and discomfort
Vitamins C, Vitamine E (Gamma E Tocopheral), as well as BetaCarotene: Antioxidents
Vitamine B Complex (complete)
Vitamine D3: I am deficient, although my level just finally got up to 42
I also take Macuguard which contains Carotenoid Phospholipid Blend Phospholipids, lutein, meso-zeaxanthin & trans-zeaxanthin, natural Astaxanthin, and C3G (Cyanidin-3-glucoside) (for my eyes). My eye doctor told me to take Vitamine A (I use Beta Carotene) and the Complete Omega 3. I added the Macuguard on my own. He said it was fine to add it.
About 4 -5 days after I went off of most of my supplements a week before the EMG and Nerve Conduction Studies, my bladder symptoms started to return (urgency and frequency, as well as dribbling which I was not aware of until I felt my pants getting wet) (I did not get the supra-pubic pain at that time, but I am sure it would have returned if I had stayed off of my supplements). After the tests, I went back on the supplements and the bladder symptoms disappeared again. So I know it is the supplements keeping those IC symptoms away. I suspect the anti-inflammatory aspects of some of the supplements are keeping the bladder from being inflamed.
Now, I don't know if what works for me will work for others. I just know it works for me. Plus, I do keep my eyes open for other possible more natural treatments.
Now, if I could just find something that completely got rid of Sjogren's I would be really happy. Probably rich too, LOL.
Here is a link to some information about Curcumin. Keep in mind Tumeric (Curcumin) is difficult to absorb so one needs to be sure the formulation is one that is easily and readily absorbed. I use Life Extensions Super Bio Curcumin.
http://examine.com/supplements/Curcumin/
i am forced to find some other alternatives. Having a two pills per symptom allows for more toxicity to be in my body. The chemo is killing my bad cells and good cells. Combine that with lyrica , norco, dilaudid, plaque nil, zocor, zofran, and on and on. I am tired of it. I will beat cancer and I will beat sjogrens but it won't happen just treating or killing the symptoms. It is going to take getting down to the bottom of why all of this happen to me.
I can say that I have lived a very stressed life. My new life will be stress free and whatever that means as far as who lives with me or is around me. The stress will not beat me.
Lady Angeldancer
You have a really good attitude, Angeldancer, and I believe that you will find some answers and some solutions.
Jasper,
This is awesome. Thank you for sharing this and hopefully Angel will benifit from these natural remedies as well. I hope you feel better soon Angel.
Kimberly
There is a growing movement called functional medicine, or sometimes integrated medicine, which tries to take a more integrated approach to health care, including nutrition, supplements, medication and so on. There are a lot of possible theories of what the underlying causes of inflammation might be - leaky gut, food issues, toxins, etc. etc. But just like traditional doctors don't know what the mechanisms are, neither do the functional medical doctors. So these are just hypothesis, just like there may be hypothesis about B-cells and T-cells.
But do be careful - some of the doctors in the functional medicine sphere engage in some quackery - Mark Hyman, the person who wrote the article, makes a great deal of money pushing books and dvds, and at least in the area of autism, his theories have been pretty thoroughly debunked. Please note I said SOME!
There are many talented and skilled functional medicine doctors, and here's a link to their organization http://www.functionalmedicine.org (http://www.functionalmedicine.org).
And I know that many traditional doctors are also deeply frustrated with only treating the symptoms! That's why they advocate for more research, or do research - they too would like treat the underlying illness, not just symptoms.
Warmwaters ..... I agree that one needs to be cautious and thoroughly research any and all possible treatments and ideas as well as the people practicing them. And I do agree about there being some who practice quackery. That seems to exist in the treatment of all disease processes.
My Rheumatologist is quite open to new ideas and novel treatments. She was involved in a study of some supplements (cannot remember which, maybe Omega 3s) and Lupus. She is happy that I am taking Curcumin and is interested in the effects/results I have had. (When I mentioned that I was taking Curcumin to my PCP, she just looked at me like I had 2 heads, LOL.)
I realize that I, too, am treating symptoms to some extent, at least with some of the supplements I am taking, but the supplements do not carry the toxic side effects that many of the main stream drugs carry. And, I am also supplementing nutrients that I may not be getting (enough of) in my diet.
My rheumy also gave me the green light on curcumin.
I don't think I am treating symptoms but I believe if they say particular vitamins build certain things in your body then I want to build on the good stuff. I know that abnormal amounts of yeast is no good and there has to be a cause. Putting good things in our body is better than the bad. Don't get me wrong. Thanksgiving I hope to be eating some good sweet potato pie at my in-laws house. I think we must exercise restraint on the sugars. I have noticed that I drag more when eating glutens. Its hard for me because losing weight during cancer is a normal and keeping weight on and just eating vegetables does not work. I will stay away from the bread and white rice though.
Quote from: angeldancer on May 06, 2014, 11:40:44 AM
i am forced to find some other alternatives. Having a two pills per symptom allows for more toxicity to be in my body. The chemo is killing my bad cells and good cells. Combine that with lyrica , norco, dilaudid, plaque nil, zocor, zofran, and on and on. I am tired of it. I will beat cancer and I will beat sjogrens but it won't happen just treating or killing the symptoms. It is going to take getting down to the bottom of why all of this happen to me.
I can say that I have lived a very stressed life. My new life will be stress free and whatever that means as far as who lives with me or is around me. The stress will not beat me.
Lady Angeldancer
You are so right,
And YES I am sure you will!
I also have desided to take only Salagen, and stay clear of any other meds for now. I am going the natural way for as long as I can. I will refuse Mtx, and am allergic to quinine as it is,
Nellie
I feel like the rest of you. I can't believe how many meds I am on. I sometimes wonder what they could be doing to me as they are given to try and help me at the same time.
I have been taking again my fish oil, and sometimes if I feel my circulation is bad, I take the niacin, and I can tell the niacin helps. Niacin was recommended to me and my husband by a doctor we use to see before she retired. She wouldn't let her own daughter take the meds that are given commonly when they think you need heart protection. (brain fog, can't think of them now, is it ace inhibitors?) Instead she told her to start at a certain dose of the niacin, and gradually build up to a much higher dose.
Later her daughter had her blood pressure come down, she lost weight, and without taking that drug.
I am going to read more of the references some of you gave. Just think about how easily many of us with sjogren's and lupus are testing low with vitamin d, and others like iron etc. So if we do not absorb everything we should, or our immune system is causing this, then we have to fight it with doing what we can to add it.
We also don't know what else our bodies are lacking that they need to live.
susanep
I wanted to add too that our water with all the chemicals in it is a concern to me. My dad use to get water from an artesian well 15 miles away when mom was alive and feeling better. They would only drink it, and cooked with it.
This was after dad was using chemicals mixed with water on his garden to kill weeds. It never killed the weeds, until dad switched from the tap water and instead mixed it with the water from the well, and then it worked.
That meant that the chemicals in the tap water was stronger than the chemicals dad bought to use on the weeds. That is scary.
Makes me wonder if the tap water could be killing any effects or reducing them with out meds we take.
Just a thought.
susanep
QuoteI feel like the rest of you. I can't believe how many meds I am on. I sometimes wonder what they could be doing to me as they are given to try and help me at the same time.
Yep, and I recent weeks have been looking at the meds I am on and their side affects, and am not a happy camper. It would appear that I am in a conundrum - meds on top of meds to treat symptoms caused by meds which of course cause more symptoms via side effects. That is what prompted me to begin looking at alternatives...
QuoteI wanted to add too that our water with all the chemicals in it is a concern to me.
The first thing I noticed when I got to this state, is when I drank teh tap water right out of the tap. I'd get sick. It's inconvenient and time consuming, but I boil and filter all my drinking and cooking water since then.
The multitude of side effects that the conventional meds have is what has prompted me to look for alternative.
I would desperately love to be pain free (OA and PN), have more strength and energy, be less brain fogged, have no skin and rash issues, just be my old self again. But I looked at the side effects of Lyrica, Tramadol, Cymbalta, and Pilocarpine. Well, the side effects are the very same problems that I already have.
I don't really need to push myself over the edge to full blown Glaucoma with Pilocarpine.
I already have problems with peripheral edema, asthenia, dry mouth, back pain, gas, weight gain, dry mouth, brain fog, and neuropathy so why do I want to compound them with Lyrica (if I can avoid it). And no one knows why I have peripheral edema (although I think it is vascular inflammation, plain and simple).
Tramadol is not any better since it also causes asthenia, dry mouth, rashes and pruritis (which I already have), and headaches (which I already have). Plus, Tramadol is habit forming.
Cymbalta is also not any better, in my opinion, since it causes headache, dry mouth, fatigue, and insomnia, which I already have those too. Plus, I know it can be difficult to get off of.
Of course, I may at some point end up on those drugs, but I would really like to try to avoid the conventional drugs and their side effects if at all possible. I would like to try to find what will keep me healthy natually, rebuild my broken immune system naturally, and treat/correct the problems I do have from Sjogren's.
I do hope people will keep posting what works for them so that the rest of us can research and see if it may work for us too.
I keep thinking that something kick started our immune systems and caused them to go into overdrive. We just need to find something that will put the breaks on the overdrive and get it back to normal.
Hi All,
Had to join in.
I have been taking 600-800 mg of EGCG for about a week now, and I have noticed a slight improvement in my joint pain and fatigue. Plan to lower dose now but wanted to get level up in my body. Will continue to see how it goes. I started it becuase I actually found some clinical studies online where they found it reduced inflammation and autoimmune damage to moisture-producing glands. Google for Sjogren's + EGCG if interested.
I have to be off the methotrexate for a few weeks while still healing a bad infection in my finger from a nasty dog bite. My blood levels were too low on the oral so they switched me to injections, but had only done one injection before dog bite, so my blood levels of MTX are surely still very low or non-existent, so the MTX would not be the reason for the slight improvement in pain and fatigue.
Jasper I fully agree that curcumin and boswellia are great for inflammation, and thanks for your list of supplements - printed off to try some. I also take CoQ10, Alpha Lipoic Acid, Acetyl L Carnetine, Fish Oil, Vit D3, but I am interesting in learning more about N Acetyl L Cysteine!
Warmwaters, I also have to agree with you that natural options are helpful, but traditional nor functional medicine doctors do not fully understand AI disease, and SOME functional and/or integrative medicine doctors promote treatments that are not effective for the sake of making money. It also bothers me that many of us try options suggested like doctors such as Mark Hyman, only to be discouraged when we don't get excelletn results and then feel like we are just not doing enough or there is something really defective about ourselves and become more discouraged.
My personal opinion is that natural supplements are wonderful and can do a lot of good, but I just don't think ANYONE begins to have all of the answers to AI disease at this time, and traditional medicines are often also needed despite the best diet, good sleep, decreasing stress, and healthy supplements. I think there is more involved and there is so much still to learn.
Sweet AngelDancer, I admire your strength and attitude and continue to pray for healing for you.
Hugs to all -
LucyD
LucyD ..... the main reason I started taking N Acetyl Cysteine is for its benefit on the lungs (and it is an anti-oxident) and that it is already used by main stream medicine for lung problems. I figured if it can help the lungs, which those of us with Sjogren's can have problems with, then I would try it. I do think my breathing is improved since I started all of these supplements but I have no way of know which one (or several) may be affecting the lungs. I suspect they all are because many are anti-inflammatory and/or anti-oxidents.
Here is the Memorial Sloan Kettering site:
http://www.mskcc.org/cancer-care/herb/n-acetylcysteine
Here is the CVS pharmacy site:
health.cvs.com/GetContent.aspx?token=f75979d3-9c7c-4b16-af56-3e122a3f19e3&chunkiid=21807
Jasper, and all: I figure oxidative stress of various kinds must have a very damaging effect with sjogren's.
Jasper said: "the main reason I started taking N Acetyl Cysteine is for its benefit on the lungs (and it is an anti-oxident) and that it is already used by main stream medicine for lung problems..."
There is valid research regarding sjogren's syndrome and oxidative stress:
See PubMed and "sjogren's syndrome and protein oxidation, mitochondrial dysfunction" "sjogren's syndrome and lipid oxidative stress" etc.
All power to all of you for finding ways for "cause and cure". Several different meds have almost done me in in the past so I take very little meds and have avoided the big gun immunosuppressants. I do get B12 shots and think the dry stomach/lack of intrinsic factor is part of the sjogren's spectrum for some people. My GP says he thinks I might be able to keep up my B12 supplies at this point with taking it orally. He is quite open to my interaction about using various non-prescription solutions and one thing I am especially careful with is I only try one thing at a time so I can tell how it affects me - that takes time and patience but worth it.
The thread on essential oils is interesting in as much as so many of us react to "strong" oils and aromas - so we have to be careful but I have found quite a few solutions - but so far no cures.
Jasper, thanks for the links.
Thanks for sharing the article, angeldancer. It contains a lot of good, common sense advice. I definitely am a proponent of functional medicine - I like the term "integrative medicine" a bit better as that is what we need to do - look at integrating our bodies (which includes the brain and mind) rather than treating everything as a separate entity.
I do have a bit more caution, however, for those who are more dismissive of pharmaceuticals. I do believe there is a bias in our medical culture towards prescribing more drugs especially as big pharm companies are extremely good at marketing to their target audiences. But that is not enough of a reason for me to not at least try something that might be helpful.
There are side effects to almost every medication. But remember, there are side effects to "natural" products as well, with some being quite serious.
I think it is sad that someone suffers when they could relieve their suffering with an appropriate medication. If it doesn't work, then so be it, stop using it, and then it's decision time again.
I came from a family where if you took a pill for anything, you were frowned upon and it was implied that you're being weak and just "running to get a pill" rather than change the root cause. Partly correct, in my opinion - we should look at the root cause. But in the meantime, I have a migraine...can I just take a Tylenol? I may not find the root cause or it might be something I can't do much about (like weather changes). But yes, I will stop eating chocolate if I have to! ;)
I am on several prescription drugs and I monitor my body very closely. I feel I am very aware of any side effects and then have to weigh those side effects against the benefits.
A good example is I'm taking magnesium (which, ironically, falls into the "natural" category) for bad twitching and jerking when I try to sleep. Without it, I'd probably get only a few hours of sleep per night. But I also have chronic diarrhea which might be attributable to the high doses of magnesium. It's now my choice to decide which symptoms/side effects are worse. I've chosen sleep over my bowels.
I also worry about disease progression and if by NOT taking a certain drug that I am allowing my diseases to become irreversibly worse. Yes, I might be able to tough out the symptoms now but have I greatly diminished my future quality of life?
In the end, I know everyone will do what they're comfortable with and no one should force us into any decisions. Educating ourselves as much as we can about our disease is the only way we can make our important decisions.
I think some medications are a must for life and quality of life plain and simple. I never took medicine until I got this disease but not taking anything would be worse.
Kimberly
Kimberly and Daisymae ..... I agree with you.
I think sometimes we need medications for any number of reasons (slow disease progression, quality of life, pain control, symptom control, etc.).
I did not mean to imply that one should never take the conventional meds. I do take Plaquenil. If I could find one that worked for me and that did not increase my current/already present symptoms, I would take it. I would like to get some of these problems (mainly edema and skin issues) under control before I start taking meds that may exacerbate them. Even my Rheumatologist agreed that I should steer clear of Lyrica due to my lower extremity edema issues. And if the supplements work, then I am happy.
We need a drug that specifically targets Sjogren's and cures us. Maybe in the future .....
Daisymae, you said so well and eloquently what I was trying to put into words. Thank you. Kimberly, I agree with you too.
Jasper, good to know you agree too -
Thanks -
Yes, I don't like the idea of giving myself methotrexate injections - it actually gave me the creeps when I read on the box, "cytotoxic."
But, the rheumatologist said it could slow the progression of this autoimmune disease, I would probably see substantial improvement in my fatigue and pain, and after a year or two of calming down my immune system, there is a good chance I could discontinue it.
I do like the injections better than the pills because I think the pills were doing a job on my gut.
Here's to good, balanced decisions and improved health for all of us!
And, AngelDancer, you started this thread - still visualizing you healthy and happy and hope you find the best combination of natural methods and possible medicine.
LucyD
We have a pet with a cancer of the skull and jaw bones. He was given six months to live at best.
The vet asked if we wanted to try standard chemo. I asked if it was likely to increase his lifespan. She said no, so I asked what would. Her answer? Curcurmin. She said research has shown it can be effective at shrinking tumors and in her practice it's been the only thing to give good results. When I asked her why she didn't offer it first she said some people are offended by natural treatments and insist on being taken 'seriously' with chemicals, regardless of the outcome.
The six month diagnosis and start of treatment with curcurmin was more than a year ago. He had an exam a few days ago. Other than being very skinny from difficulty eating due to dental complications his cancer has not spread and he's still running around having a good time.
Our pet is a small sample of one but he's important to us and our experience with him agrees with an existing body of favorable research.
Curcurmin based drugs are typically extracted from common kitchen turmeric.
I actually use turmeric on my eggs and soups. I wonder should I just take the curcumin supplement.?
Thanks everyone for commenting on this thread.
The problem with Turmeric is that is is not easily absorbed. There are some Curcumin products that are more readily absorbed and thus have more bioavailability. If you buy a Curcumin supplement, look for a product that is standardized for 95% curcuminoids. In addition, neither Curcumin nor Turmeric taken orally is well absorbed unless taken with black pepper or piperine, a constituent of black pepper responsible for its pungency. When shopping for supplements, make sure that the one you choose also contains black pepper extract or piperine.
Thanks Jasper.