Depressed

Hi Nancy, I take Vitamin D3  20,000 iu.  Is that enough?  I need to buy the other vitamin you recommended, which I have forgotten here.  

Thank you! I have a rhuematology appt Aug 30th and will ask that the TPO test be included. What probiotic and vitamin D3 do you use?

Ah, Susan, HI! yes that is plenty high, but how long have you been taking that much? Over one month, it needs to be balanced with vitamin A (the real vitamin A, not the precursor Beta carotene apparently) to not become toxic. Do you have evidence of constipation yet? Apparently Vitamin D can be constipating as can Boron. So magnesium is required as part of the autoimmune nutrition protocol.  please do look up the whole list I've created.  I've made the choice to do it all as my intuition tells me. Not necessarily everything everyday for instance, but the data is there..and I don't want another autoimmune disease to visit me for the rest of my life. the list is in one of my messages save din the discussion list foudn by clicking my name. 

Hey there OrangeRobin, that's great - you'll get wiser and wiser and let us know what you learn right? - smiles.

Well, if you are going to get bloodwork done then, also ask your rheum guy to let you know what your last Vitamin D reading was... or if you haven't had one in a year to do that as well. ( I'm not remembering just now if that is a standard part of a CBC panel).  

Just so you know, Rheumatoid Arthritis IS associated with a higher incidence of thyroid hashimoto's etc. so asking for the TPO will not be considered unreasonable - so is vitamin D deficiency. Let him/her know that you want ot aim for a high end of D reading - 80-90 ng/dl.  It'll be really interesing to find out how much rheumatologists know about these associations. Keep us posted - smiles. 

OH! almost forgot, one of the items on my list I developed is that we should be taking a fermented product for the rest of our lives.  I used to think that kefir was it for me, but more recently i've realized that I really should stay off of dairy as much as possible. SO, I'm doing sauerkraut I want to learn to make it myself. including the vegetable versions. I'm not as much a kimchi fan as my daughter but that is really good for us as well. 

I personally have found a liquid Vitamin D3 that I"ve been taking; it comes with Vitamin K2 in it as well which is also needed to work along with the D.  however I'm about o run out of that brand i found online and recently ran across an article that makes me realize that we can get our vitamin K2 from food sources.. argh hahaha now I've gotta refind that to i can share that. It would make the supplement a lot less expensive to not have to pay for them mixed together... will let you know.

I get so confused on all the dialogue going on here and just saw t his.  I've been taking Vitamin D3 for about 3 months.  No issues so far.  I have yet to get Boron and magnesium.  I'm not a great pill taker, so looking for a combination vitamin.  AND how do we know the efficacy of these vitamins?

ah so... thanks for letting me know, Susan ... and you'll also get the other interactive supplements too right? - whatever feels right for you).

Well I only researched things and created this list out of research studies from MD's ND's, CN's, medical groups etc. (doctors, naturopaths and Clinical Nutritionists).   

https://patient.info/forums/discuss/pathway-into-and-out-of-autoimmune-diseases--661033

So, Susan, I've never been big on pills either BUT... I have very definitely forgone my previous predilections, attitudes and assumptions about life in preference for a healthy pain-free life. 

The validation for each one on my list is in the clickable references right underneath the comments so please do take a half hour or so to read it through to understand why we need to supplement to bring our levels up to snuff.

Then we can return to assuming we can get enough from our food AFTER we know we are clearly out of the woods... but don't forget, those autoimmune antibodies don't go away! they will sit and lie in wait for the next time we live a life not in accord with our susceptibilities (if I understand this bit about genetic predispositions enough).   

Iv'e been taking 11 or 12 pills or liquid drops for 5 months now. and just now I'm finally feeling that I can move on with my life - WITH a new appreciation AND a slightly new routine that blends into my life just fine..we will never go back to our old, dare I say "unconscious", life of eating what ever junk food we feel like and assuming our bodies will put up with it forever, or keeping on with the stress without addressing it.

I'm sure you can get those pills down for a few months and then modify as needed to reduce them to the least possible or find food that does the same - (though I've looked, and getting health back that way requires tons of fresh vegetable and fruit and - oh my gosh I jsut don't know).

 be well and sassy - smiles

Hi Nancy,  I AM taking the vitamins, still have to get more but do look for liquid when I can.  I take liquid Vitamin B12.  I have already modified my food, no sugar, no bread.  More diligent about reading ingredients as well.  No spicy food either (i'm crying here).  Bought baking soda for sitz soaks or spritz, CBC oil, plus Emuaid.  My goal is to NOT use Clobestol. I have fused and the LS is working its way over to the other side of my labia.  Every day I wake up and its a new landscape.  I'm not freaking out as I was in the beginning and I'm determined to not let it run my life or become so upset that I don't entertain the idea of a relationship. I'm 72 and still hoping some guy will understand and not expect sex like a 20 year old.  

Awww.... well I'm 72 too and haven't had a love partner in many years.. hopeful hearts spring eternal doesn't it?  smiles. anyway, WHY are you denying yourself delicious spices? I've not seen that proscription? who said so. OH .. do you have the LS in the anal area sometimes? that is where mine started I believe ... and I used to think that I must have eaten something spicy or hot or whatever... but realized belatedly that that was never the case... I was having discomfort from the anal canal having probs with LS unbeknownst.   Do get that amazing aloe vera tumeric mix going and you'll find that that's taken care of in no time. at least that is what has finally worked for me. 

hopefully nobody will throw tomatoes at me.. .but I have to agree with you about not using steroids.  I listened on here for about two minutes last December, gave it consideration but read enough negative stories to not want to jump on that ship. Then to boot, I found out that here in the US the $180 dollar cost is not covered by insurance; and the stuff only lasts maybe what? somebody mentioned 10 days, so maybe it lasts another week.

So - riddle me this: the medical sites even admit that steroids are not a cure they only help with pain. This very forum has many women noting that the minute you stop taking it the pain comes back or something else equally uncomfortable.   So what could that $180 dollars do if we were to spend it on HEALING agents, not mere palliatives? huh? 2 to 3 MONTHS of rebuilding my immune system versus 2-3 weeks of expensive pain relief that can be had otherwise we now know. Others mileage may vary greatly, so many blessings on each of our paths.   but for me dear Susan, it's beyond a "goal" it's a no-brainer; off the table almost as soon as it was presented.  So smiles - keep to your get intuition and carry on!

HI Nancy, I have to figure out how much I have paid for Clobestol.  I have issues in both places with LS.  Seems to be less itching with Emuaid and last night tried CBD oil but the jury is out on that after one application.  I just want to unfuse if possible.  

Thanks for hanging with me.  Can't wait to try the aloe with tumeric.  Sounds like a winner!

Keep on keeping on and just love all the information you have gathered for all of us here.  Thank you.

 

Hi Nancy and Susan- I am Replying to this because my thoughts have gone down that same road. Been 26 days diagnosed, ( no Dr. Appt until July 24, hence no prescribed meds), only used Emuaid and Emuaid Maxx with a moisture barrier and all ulcers are healed, pain and itching are gone. I hv eliminated wheat, most sugar, most carbs, upped my supplements and am feeling good. Still hv not tried sex yet...

However- The video I watched from Dr Goldstein (?) from NYC stated that what I hv been doing is treating the symptoms, not the disease. He stated that only Clob or other steroid penetrates ( through 90 seconds of rubbing), through all of the layers of the dermis to combat the T- cells that have gone awry.  My fears are twofold-

1. If I don’t use steroids am I treating the disease or just “ putting a bandaid on it”

2. I am sooooo worried about side effects from steroids! I am one of thise Murphy’s Mal people, if it can hv a bad effect, it will . ( IE- Toxic Shock Syndrome from tampons at 17, Mono recurring at 17 and 37- very rare,  allergies to pain meds, etc.  now LS...). 

I worry that when I do see my Dr. She will not know anythi g beyond what she read in a textbook and immediately give me Clob ( or other), tjiugh I hv 2 pages of notes on other treatment options. Or will she send me to a dermatologist who doesn’t deal in “lady parts”, the wait for the bulvular specialist in my hometown is currently 4/1-2 - 5 months for a consult! 

Ugh!!!!!

Things are going well, don’t want to upset the apple cart! 

Your thoughts???

Ah, well... I can't respond from my limited knowledge of biochemistry about Dr. Goldsteins' statement about T-cells... BUT I can certainly look up the word and find out that he is talking about immunity: 

from wikipedia: 

What is the role of the T cells in the immune system?

This mechanism allows killer T-cells to hunt down and destroy cells that are infected with germs or that have become cancerous. The other main type of T-cells are called helper T-cells. Helper T-cells orchestrate an immune response and play importantroles in all arms of immunity.

So I haven't watched that video in ages and don't remember much of it. Karen do you remember if he said anything about building the immune system by improving our nutritional status? Probably not, right? 

SO,  we gotta always look beyond any DECLARATIVE sentences like that; that tries to make you afraid: call it out - we gotta up our games folks, look beyond the surface.  It sounds like Dr. Goldstein knows what he is talking about... ahem, within his own paradigm of reality.  BUT for those of you who know anything about statistics, you'll remember how data can tell a different tale based on how it is tweaked (think: what variables have been LEFT OUT of the equation?)  

So try this on Karen and others: 

1. Autoimmunity is a "self-inflicted" imbalance in a human's homeostatic systems i.e. a SYSTEMIC problem. 

2. A solution will be found in rebalancing the whole living system.   

3. The T (thymus) lymphocyte cells travel through the blood stream and lymph system to wherever they are needed from the thymus (I just looked this up to confirm I got this)

 

Karen, you know your body best  - YOU are the one living in it. You have known since a teen that you have a hypersensitive living system (that ain't going away).  Believe in your own intuition

So, for Dr. Goldstein to suggest that the ONLY solution is a steroid applied on site in the body, when in fact t-cells travel all over is leaving out a huge variable.  as I understand it. 

                      The WHOLE is greater than the SUM of it's parts.

aww...I'm tired, gals.   I'm not dissing anyone here. We NEED the parts-to-whole scientists. I'm ever so grateful that the biochemists who created levothyroxin did so so that people like my daughter who got thyroid cancer could continue to live well without hers. Those are parts -to whole thinkers/researchers. HEY! and the biochemists who discovered vitamins and how they worked and the interactions between them and minerals... so that WE AUTOIMMUNE folks can live well again too! 

For myself, I take the WHOLE SYSTEMS approach. It always, for me, comes back to building a very strong immune system to the best of our knowledge - and then find peeps who know MORE. and do that. and then LET THE IMMUNE SYSTEM take care of things.   

The only problem is that our western medical system made up of brilliant hard working scientists -doctors  is that they are all mostly still working in isolation - when in fact our bodies are a magnificent well-oiled harmonious interactive holistic SYSTEM. We need systems thinkers. The functional medicine physicians are those systems-thinking men and women who realized the problem and apparently on their own went and taught themselves after med schools the pieces that were missing. I'm assuming that is why I notice so many functional medicine websites have clinical nutritionists listed along with an MD. 

I will be so very happy when the day comes that HOLISTIC functional medicine physicians who think of the whole patient first are available for ALL in a UNIVERSAL HEALTH CARE SYSTEM in the UNITED STATES. 

anoher wikipedia noe: T cells come in two different types, helper cells and killer cells. They are named T cells after the thymus, an organ situated under the breastbone. T cells are produced in the bone marrow and later move to the thymus where they mature.