I'm requesting the MedHelp Moderators for some latitude to allow the posting of
pertinent links for the benefit of all members concerned.
Auto-immune conditions are on the rise*, without any effective therapy available.
Diagnosis is extremely challenging and there is no specific medical specialty
which addresses these conditions adequately.
The closest specialty would be Rheumatology, but so far results for the average
A/I patient are far from desirable.
Diagnosis takes typically around 5 years or longer and treatment consists of symptom management at best, without any realistic prospects of cure in the horizon.
Among the biggest problems in A/I disease is the lack of funding for A/I research.
*About 50 Million people in the U.S.A. ( estimate from the American Autoimmune Related Diseases Association) suffering from an A/I disease.
Hey Pstina.
You seem to be doing a lot of the right things.
Going on a wheat/gluten free as well as dairy free diet seems to help you manage your life a little easier, right? I'm glad for you!
Gluten is usually the main culprit (with dairy being number 2), however, please read on:
In the event of cross-reactivity some foods like rice, casein, corn, yeast and others which have a very similar amino-acid sequence to gluten's, may cause the same response from your immune system!
Suggested reading:
https://dv4tl7yyk1zlp.cloudfront.net/a5a34c03-4ccc-483a-a43a-5cfd767cb086/45f5e1a6-24fa-4e12-98b6-416a64b800c8.pdf
Suggested tests:
---Dr Coca's Pulse Test (free domain/free download) 1-2 weeks to complete on your own.
Fair degree of accuracy.
---Intestinal permeability (leaky gut) test. See "Intestinal Antigenic Permeability Screen"
Array 2, Cyrex Labs. Must be ordered by licensed health professional
Or look into Serum Zonulin Test
---Also look into Array 3x, 4, 5, and other ones, possibly relevant to you from Cyrex Labs
---Elimination diets are useful but often take far too long. Gluten's effects may still be lingering around for months after it's elimination!
Also look into molecular mimicry in regards to autoimmunity, similar mechanism to cross-reactivity, but the immune system reacts to tissues in the body which have similar amino-acid sequences to foods.
Suggested reading:
https://www.diagnosticsolutionslab.com/sites/default/files/Molecular%20Mimicry-Hygiene%20Hypothesis-Autoimmune%20Epidemic-Brady%20D-Open%20Journal%20of%20Rheumatology%20and%20Autoimmunity-2013.pdf
I hope this helps, however, I must mention again that my comments and links
are for educational purposes and not intended as a substitute for medical advice.
Best wishes,
Niko
Hi Pstina.
Unfortunately diagnosing Sjögren’s (pronounce Show-grins, the way my Swedish friends told me) Syndrome is very challenging to say the least.
From a practical point of view a "possible Sjögren’s Syndrome" diagnosis (in your case secondary), may not serve you well, considering that there's only symptom relief treatment.
It takes over 5 years on the average to officially diagnose SS..
Because it is a Syndrome/Systemic Disease affecting many bodily systems and organs , the diagnosis may call for a number of different specialists to get involved, a process which complicates matters further.
I understand patients' need to get a dx irregardless of availability of effective treatment, however, let this be a motivating factor for you to pursue solutions and strategies outside the conventional medicine box.
You seem to be a "fast study" and motivated.
Look into the following :
Methylation
Methylation is a process involved in nearly all biochemical functions in the body.
In chronic and autoimmune disease, most sufferers have some degree of methylation impairment. (Usually due to genetic mutations - C677T
and /or A1298C MTHFR gene)
The short cut to diagnosing low Methylation function, regardless of cause, is an
MMA test along with a Homocystein test. These tests will indicate Methylocobalamin and Methylfolate levels which when low, methylation function
is low.
(Independently, some of the main symptoms of a functional folate deficiency -methylfolate- include anxiety, depression, shortness of breath, difficulty concentrating ,poor memory and more.
And symptoms of a functional B12 deficiency -methylocobalamin- include anemia, shortness of breath, neurological issues like nerve damage, tingling, vision changes, digestive and G/I issues, weight loss, etc)
If you are hypomethylating - regardless of cause - your T-cells will be low and your B cells high.
Which means you'll likely have many food and environmental sensitivities along with chronic inflammation
In addition, your energy production will be diminished mainly at the mitochondria level and the Co-Q10 production , affecting primarily the muscle cells which have around 100 mitochondria each and to a lesser degree the nervous system cells.
Look into your underperforming body systems and functions. Low energy levels and prolonged inflammation can easily explain that.
In addition, methylation turns on and off genes. It helps process and breakdown toxins, xeno-estrogens (from cosmetic products, chemicals etc.), neurotransmitters
(in excess when accumulating and not broken down, serious issues like insomnia,
anxiety can arise).
In your case, in the event you have low methylation, your body's ability to detox, repair, fight infections, etc would be severely compromised since you're taking biologics.
Low battery warning.
GTG now but post again or message me if you have any questions.
Best,
Niko
Hi guys. By doing my own research, I actually might have found the cause to my health problems - Sjogren's syndrome. It's an autoimmune disease just like rheumatoid arthritis, which I have, except it affects the body's mucous membranes. I just read that about one in three people that have arthritis develop Sjogren's at some point in their lives. My rheumatologist hasn't ever mentioned this to me. All my physical symptoms actually line up with this syndrome. The occasional loss of vision can be due to dry eyes. The acid reflux, malabsorption and other digestive issues are very common in the syndrome, since the stomach lining can evidently dry up. Absorption of nutrients such as B12 and vitamin D is weak, which causes additional health problems such as mental health issues, neurological issues etc. The syndrome can also affect other organs, such as the lungs, which would explain my breathing problems. Severe fatigue is part of the syndrome. There are also other common symptoms to the syndrome, which I have, such as purple rashes, dry mouth, yeast overgrowth in tongue, multiple cavities and other oral issues, since the mouth is too dry. Another indication is also high ESR, which I've had for several years and has puzzled my rheumatologist. I'm going to call my rheumatologist next week to tell that I suspect this syndrome. I guess the reason my rheumatologist hasn't considered this syndrome is because it typically occurs in women over 50 and I'm in my thirties. I don't want to have yet another autoimmune disease, but on the other I would be relieved to have found an answer to my puzzling symptoms.
Have you had blood work done? Hyperthyroidism can cause these symptoms. If you do get blood work done ask for TSH, FT3 and FT4 (not just TSH). Also, you may want to ask your PCP to refer you to a neurologist just to rule out rare brain related conditions (your brain is probably ok, just to rule this out).
PPIs and other acid reducing meds are on top of the list of de-prescribing, a fairly new field in medicine. It's about time!
If your gastric acid levels are not back to normal (perhaps they were too low already before your controversial treatment, which would explain acid reflux symptoms as you mentioned), you will have a number of deficiencies, including a functional B12
deficiency (even if you're taking B12-unless it's B12 methylocobalmin and preferably
in drops, taken sublingually).
Do a Betaine HCL challenge (look it up) for self-testing your gastric acid levels.
If low you may want to take with each meal a tablespoon of Organic raw unfiltered apple cider vinegar, which contains the mother.
Also pay attention to your vitamin D levels.
As a precaution it is safe to take let's say 2000 IU of D3 daily, as long as you take K2 with it.
Make sure you also take foods rich in magnesium and do a magnesium oil transdermal treatment (magnesium chloride flakes with water 50-50 and sprayed on the bare skin and left on for 20-30 min. before showering) every couple days.
Extra Mg could help with headaches, anxiety, digestion and more.
And naturally, as backhurtz mentioned, you really need to know about supplements
and any potential adverse reactions as well as interactions with your meds.
Oh BTW, make sure you're adequately hydrated all the time. Do not use thirst as a guide, because it may not be reliable. Drink spring water 1 hour away form meals.
It might also help with your headaches.
Any questions about supplements or anything else please post again or pm me.
Best wishes,
Niko
Check for a medication interaction as well. Some medications can cause adverse effects, even with supplements or vitamins. You would need to compare each medication against each other and the otc supplements you are taking to see if there are adverse interactions.
Hi Pstina and so sorry about your suffering.
The sudden anxiety and other symptoms may have to do with malabsorption and deficiencies, perhaps caused by underlying pathogenic infectious conditions.
You immune system, when taking biologics (immuno-suppressants) , has substantially diminished ability to fight infections.
In addition, an undiagnosed infectious condition could be a contributing factor in your arthritis.
Finally look into the Gut and Phsychology Syndrome (GAPS).
You might find some information pertinent to your condition.
However, you really need to find a new doctor, who's willing to work with you.
I hope this helps, but please note that my comments are not intended as a replacement for medical advice.
Best wishes,
Niko