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Auto immune Diseases- Can you help me by sharing your experience?

I was just reading in another thread someone from a group dealing with Auto Immune diseases offered some good tips/advice but when I went to that group site ot potentially join noted that you "must be over 50 to join" so tjhat leaves me out. LOL!
Anyway, since it appears we do have some members on here dealing with these issues I was wondering if you might share some of your experiences? I am 39 and the docs have not yet diagnosed me with a "lifelong" one they have only ruled out several but have now stated that their "working" diagnosis is Reiters Syndrome which is auto immune related. I have been active and healthy for many years now (lost over 100lbs over 11 years ago now and at a healthy weight) and all of a sudden one day something strange happened to my eyes, then my legs started swelling massively, then my arms etc all within a 3 week period. Very strange and very scary. At first the docs were treating symptoms separately and chalking the swelling up to separate injuries due to my workouts but you know your body better than anyone else, right? So, I insisted they run more tests and they did, for Lyme, RA, and many other things. EVERYTHING came back negative with the exception of there being extensive systemic inflammation.
That said they have opted to put me on Methotrexate and for any of you dealing with this you know this is a form of chemo, which scares me a bit. I am now on 6 different medications, see 4 different doctors and was laid up for over a month completely. After some steriod injections and oral steroids I've recently begun to get back into my workout routine (working through the pain, some days better than others) but I would love to hear about experiences from others who've dealt with this, taken this medication and the effects you've had with it, whether or not you can/do continue to exercise, what kinds of "diet" you find most helpful, etc.
I've had the Methotrexate for 3 weeks now and finally relented and started taking it Tuesday, so far not so bad but am nauseous and pretty worn out. Just wanted to get some other opinions.
BTW- sorry for the long post, just wanted to be able to give the background. :0)
Thanks to any and all who can provide some constructive input!


Thu. Oct 30, 2:30pm

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My osteopath told me that you don't typically get one autoimmune disease without family history, it's very unlikely.

In my situation he was right! He found out (after regular docs didn't find it for 5 years!) that I have Hashimoto's disease, no family history. So, we did one more blood test and found out I have a gluten allergy, Celiac's disease.

Turns out treating one actually helps the other.

I don't have much faith in good ole' M.D.s anymore. Maybe you can see an osteopath for advice.

Fab.

Thursday, October 30, 2008, 2:35 PM

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You hit the nail on the head! I railed about wanting a second opinion from a different type of doctor a NON Rheumatologist (well hello, they specialize in immune disfunction!) and asked to be sent to an infectious disease doc or anyone who would look "outside the box" and unfortunately you need a referral. well my PCP wants me to give this a try but you have to give it 6 mos to a year before they know if it's working which is the frustrating part. That is when he told me this is not a final diagnosis but a "working" one. Through all of this, I too, have lost an awful lot of faith in these docs and have done a lot of fighting with them on my behalf to get nowhere. It is very frustrating because you are at their mercy,,, or start all over again.

Thursday, October 30, 2008, 2:53 PM

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We will start a section on this specific issue, and link to all the relevant conversations and teams. Please post what you find on this thread, and you also probably want to start another team on auto immune disorders. We will help promote this and we will also work to get you guys as much information as we can find.

-PT

Thursday, October 30, 2008, 6:30 PM

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I had a really frustrating experience with Western Docs when it came to Autoimmune disorders. They just don't seem to have a lot of answers. Anyway, I was "diagnosed" with Hashimoto's Disease (autoimmune of thyroid), and ended up getting treated by an acupuncturist/naturopathic doctor. Can't tell you how glad I am that I did.

Thursday, October 30, 2008, 8:40 PM

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Orenda

It's so hard to see a thread like this and not respond; I don't like the idea of a captive audience. So let me just say, that if anyone would like to talk to me about natural products that support Immune modulation, please feel free to contact me.

Link

Thursday, October 30, 2008, 10:58 PM

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I totally agree with the 8:40 poster. Go see a naturopath if at all possible.

Thursday, October 30, 2008, 11:35 PM

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This is the OP- Thanks PT, I appreciate what ever information I can find/get. I've done a lot of research on line but that's all medical based, I think getting the information from people who have actually gone through or experienced the same issues help in understanding a bit more.
Really appreciate the support.

Friday, October 31, 2008, 7:21 AM

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OP -- there's hope

I am in the auto-immune group that you checked out -- the over 50 one -- and I am 34. I asked and they didn't have a problem with younger people joining. There are several of us who are in our 30's and the group is great, so if you'd like to check it out, I recommend that you do. Otherwise, we should make another autoimmune group/team that doesn't have an age in the description.

I have psoriasis and severe psoriatic arthritis. The arthritis effects most every joint in my body, including my spine. Aside from the inflammation and pain there is tremendous fatigue. It's not a terribly pretty picture! But I am lightyears better than I was when I was diagnosed and I've done it without the big guns to this point. So far I have managed with NSAIDs and a few supplements. When I was diagnosed I was supposed to go on methotrexate and was told that Enbrel would be probably 6 months away. I didn't start the methotrexate (same fears you've had) and I have done well. In addition to my regular rheum. I see a naturapath and accupunturist and go for reiki and massage as often as I can. I've been gluten free and vegan for 2 years with great benefit. However, my turning point came when I read about the benefits of nutrient dense foods. Even though I was vegan, I wasn't getting enough greens (sounds ridiculous, I know!) So, I HAVE to recommend that you read Eat to Live and/or Eat for Health by Dr. Joel Fuhrman. I read his work in April, started with his Eat to Live approach and had a tremendous improvement. I still have significant flares (I've been in a bad one for several weeks now), but eating nutrient dense foods seems to be the best way to fuel your body, especially when it's out of balance. Definitely get your hands on Fuhrman's work --- you will devour it and put it into practice --- there's really no way you can't once you read it and it has the potential to change your life not by putting dangerous drugs into your body but by making "nutrition the prescription". There is an active Eat to Live/Eat for Health team on PT that is excellent for support as well.

If you decide to check out the over 50 group, even though you're not --- I'll look for you! Autoimmune issues are hard enough... it's really nice to have other people who understand what you're going through. Hope to see you around.

Sarah_L

Friday, October 31, 2008, 8:12 AM

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Inflammation fighters

OP -- In addition to mentioning nutrient dense eating, I wanted to post the supplement regime that I use since something here may help you. I research all I can when it comes to fighting inflammation and with the help of my naturapath and a little experimentation, this is what helps me:

vitamin D (per recommendation of my naturapath). I have used Biotics Bio-D-Mulsion Forte and Rx Vitamins Liqui-D3. Both are liquid emulsions. 1 drop provides 2,000 IU vit D.

1000mg omega-3 fish oil 3 times a day (180 mg EPA, 180 mg DHA).

Curcumin -- I use Ageless Cures Super Curcumin C3 Complex with bioperine (1000 mg 2 - 3 times a day depending on severity of inflammation).

The vitamin D and fish oil make a marked difference for me with respect to pain relief, inflammation and suprisingly, mood. The curcumin (active component of turmeric) offers significant anti-inflammatory benefit in my joints now; it took a while before I noticed a difference.

Sam-E can also be helpful. Definitely talk with a doc before starting this one, especially if you have any history or inkling of mood disorders as it can be tricky.

Arnica Montana is a useful homeopathic remedy both taken as a tablet or used on a sore spot as a cream or gel.

Epsom salts mixed with hot water offer some relief for sore areas when you soak them.

Finally, Barney's formula is something that many people in the psoriasis community talk about --- it's a combination of vitamins and omega-3 and it helps a lot of people with inflammation. I will include it as the link below. His site has a lot of information about vitamin D and it's anti-inflammatory properties in addition to many other things.

Good luck,
Sarah_L


Link

Friday, October 31, 2008, 9:38 AM

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Sarah- have you ruled out food allergies/intolerances. I am very intolerant to wheat and dairy and it manifests itself in my skin.

-Habib

Wednesday, December 31, 2008, 4:07 PM

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Thanks Habib

I am wheat and dairy intolerant as well and have been a gluten free vegan for a solid 2 years. While my skin hasn't really changed much, I did notice a positive improvement in my psoriatic arthritis for over a year with the dietary changes. When I started ETL in April I noticed even greater benefit. However, over the last 6 months, the arthritis has progressed to more joints and has significantly impacted my ability to move. So, I've reluctantly begun a disease modifying drug (methotrexate) in the hopes of stopping further joint damage and regaining freedom of movement. What I am still really pleased with is the fact that my diet has kept my inflammation low for so long. I would love to get to the point where I can try a medical fast per Fuhrman's Fasting and Eating for Health. I think that may be one of the only remaining ways to reset my immune system without heavy drugs. Anyway, more than you wanted to know, I'm sure. But thanks for the thought and suggestion.
Sarah_L

Thursday, January 01, 2009, 9:14 PM

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I'm new to PT and was interested in your question. My experiences with undiagnosed Lyme Disease and referral to a rheumatologist lead me to believe it's always good to start back at square one. Rheumatologists only manage symptoms and stop looking at any other possibilities for those symptoms. In my case I finally was so frustrated I went to an infectious disease doctor recommended to me and what do you know, I had Lyme disease afterall, despite negative ELISA tests before. The reason: there's lots of controversy & the CDC recommendations are very poor. You have to get the Western blot test (I tested positive), but my doctor treats based on clinical history (once alternative diagnoses have been eliminated) if you live in an area where Lyme is endemic. You will know very soon if you have Lyme based on whether you have a Herxheimer reaction after taking antibiotics for several days or a week (length of time varies) -- you feel sicker when the organisms start to die. I have no idea if you could have Lyme Disease, but I know doctors led me to believe I couldn't have Lyme due to negative ELISA & I had five difficult years without proper treatment and then two years of treatment that was fairly hellish at times. I now am a little over a year cured and feel so much better and would like to kill the doctors who kept telling me I had an autoimmune disorder or fibromyalgia or was menopausal, etc,, etc. So, part of my mission in life is to tell people with autoimmune problems to make sure they do not have Lyme Disease.

Friday, January 02, 2009, 11:22 AM

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Your success story with lyme?

Hi ~ I recently learned that I had lyme and would love to know what you did to cure it. I also have had many other diagnoses over the years. I've felt much better yet blood tests still show spirochetes, so I want to take more specific action. W ould love to connect. ;)

Wednesday, July 11, 2012, 5:29 PM

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I turned 40 and all of a sudden I looked like I had gone over the hill! There were subtle facial changes...a bit of swelling around my eyes, kind of a different texture to the skin... I don't really remember all the changes because they were so minimal, but they added up.

I had to go for a physical for the job I was in. I didn't say anything about suddenly looking older, but the doctor looked at me, and said," I want to check your thyroid function levels". It turned out I was hypothyroid - Hashimoto's thyroiditis, an autoimmune disease - my own antibodies had burned out my thyroid! The doctor put me on thyroid replacement (Synthroid). Those changes that I thought were just from getting old went away! I've been on Synthroid for years now, and will have to take it for life. I take it every day, feel great, and have no problems. The doctor did a great job!

Thursday, July 12, 2012, 2:35 PM

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