Lupus Q&A 8

by | Nov 10, 2017 | Lupus Blog | 0 comments

Click the video above to watch this week’s Lupus Q&A! If you prefer to read, the questions and answers are below. Enjoy!

Beverly Astley: The probiotics I take are working wonders on my stomach but my immune system is still out to kill me. On a positive my kidneys are doing better but my lungs and heart are getting my immune systems attention now. Help what can i do?

Much of our immune system resides in our gut, micro biome contributes significantly to aid in either protecting or destroying our cellular processes.
The underlying inflammation is what’s making your heart and lungs inflame.  Typically for such inflammation, Rheumatologists look to biologics such as Ramicade or methotrexate, NSAIDS, or corticosteroids to “control” the symptoms, but we are finding more and more that it’s doing more harm than good.  And statistically, patients are not able to tolerate the drugs so 50% get off of them.
One thing to mention is that such meds are a multi billion dollar industry and where there’s money, there’s underlying factors to ensure that they are being used (biased clinical research deemphasizing the negative effects). Unfortunately, we as patients at times are subject to such treatments.
Your immune system is not out to get you, it’s just a bit confused when differentiating friend from foe.  The probiotics help to strengthen the first defense barrier, the gut, but with Lupus or autoimmune, our body is still inflamed and confused, so it takes time to self modulate.  Allowing your body to create balance is key and all that we do here on my group and my site, is to help your body do just that.
If you remember my post last week about “mitochondrial dysfunction” at the root of all disease, the cells that exist in your lungs, heart, and kidneys are dysfunctional in the way they metabolize and receive and give signals to the rest of the body.
To drive healthy signals and metabolic processes, it’s important to help our cells at the surface to have healthy membranes.  Such membranes are made up of phospholipids, which needs fatty acids. This is why we recommend Fish oil.
Fish oil EPA/DHA blends help to create health on the surface of the cell, decrease inflammation, and improve signaling and communication, ultimately improving your metabolism.
Metabolism is much more than your body’s ability to burn calories.  It’s the way your body absorbs nutrients, create energy, and detoxifies unwanted byproducts through elimination of your feces and urine.  For us Lupus patients, we struggle with the metabolic process involving fragments of our own DNA from our cells floating around, and our immune system is trying to get rid of these debris by producing antigens against our own cells.
So how can you improve?  Eat a diet full of raw, low glycemic vegetables and fruits, such as broccoli, kale, celery, beets, blueberries. These give your body the phytonutrients and micronutrients that your cells need to transform your food to energy and to feed your probiotics so healthy bacteria can colonize in your gut.
I’d also recommend CoQ10 and a therapeutic dose of quality Fish oil (2-3 grams daily, but you must make sure that you’re getting a good quality one, as most that are available on the market are highly oxidized, which means they can create more inflammation due to the way they were produced).
Get enough sleep and exercise. Manage your stress, which will shift your autonomic fight or flight response to a more calming state that will prime your body for healing.
Thanks so much for such a wonderful question!

Pamela-Jean Kristen DeAquair LaScola: After thirty some years living with Lupus four years ago I was one of the lucky 5% to be dx with Jaccoud arthropathy. It has attacked my hands, feet, and knees thus far. I am unable to cut my own food at times, I can’t open anything, can’t hold a pen and write anymore. The strength is gone, and my thumbs are permanently dislocated. All of my toes or curling so bad they had to cut the tendons underneath each of them so that they would straighten out to avoid ulcerations. This has literally crippled me. Yet, when one researches Lupus and its effects they still will state that unlike RA Lupus does not cause hand deformity, which is outright wrong. I have the swan fingers, my pinky’s curl while other fingers lay straight and won’t bend. It is my belief that hours as a massage therapist made me more susceptible to this condition. I know I have been told there is no treatment for the laxity, however I wondered what your thoughts were as far as maybe supplementation that could possibly strengthen or tighten the tendons. I can bet that a great percentage of the people that will see this question won’t even be familiar with this condition. I will leave the explanation to you. Thank you.

So to start let’s first explain what Jaccoud Arthroplasty is.  It was first described by Dr. Jaccoud in 1869, and this complication was associated with scleroderma, vasculitis, Sjogren’s syndrome, psoriatic arthritis, but mainly SLE.  It was also seen in non rheumatic conditions such as HIV, inflammatory bowel disease, and sarcoidosis.  The deformity as shared by Pam resembles RA, but good news is that this condition is reversible.  The joint deformity is due to subluxation of the distal finger joints, swan neck, and z deformity of the thumb.  Although it’s more commonly observed in the fingers, it can also involve the knees, shoulders, and feet.
There’s presence of synovitis (inflammation of the joint space) and fibrosis around the joint.  So basically inflammation.
I know that this is getting really old, but I hope you all see that the underlying issue is the inflammation in the body.
Leaky gut exposes us to foreign toxins, and over time our immune response is overwhelmed to the point of confusion. This creates inflammation and further dysfunction, causing the manifestation of various conditions in our body.
So the answer to the question is to follow our elimination diet to the best of your ability, remembering a diet high in low glycemic fruits and vegetables, moderate protein, and lots of good quality fats, such as avocado, coconut oil, organic butter, extra virgin olive oil, and nuts.
As for supplements, I recommend probiotics, collagen formula, fish oil, and a good quality multivitamin. Again, I carry these and share what I choose to use for myself most importantly, as well as my patients.  Please let me know if you want specific recommendations.

Heather Thacker: Is it possible to have a negative blood test for antibodies and still have lupus? I’ve been positive in every single one and constant worsening of pain and ailments in my body for the past 12 years! But, when I was pregnant with my last son over a year ago… I was told about five minutes after they drew my blood that I didn’t have the antibodies and no further testing would happen. They still put me on Lovenox, though. Now my family wants me to test for Multiple Sclerosis, as two of my aunt have it and some symptoms are similar and since my sons birth I’ve had back, memory and vision issues worsen dramatically. I just don’t know where to go from here.

It is very evident that Lupus created underlying symptoms long before the actual diagnosis. Let me be clear here that names like Lupus, RA, Sjogren,s, MS, etc. are arbitrary names for various symptoms.
For any autoimmune conditions, I’d like to consider them all a collective dysfunction of the immune system due to decreased tolerance (either due to stress or genetic susceptibility) which resulted in leaky gut, leading to inflammation, which is then perpetuated by our confused system with toxic overload.
So our approach is simple, heal the leaky gut, decrease inflammation, and reverse the mitochondrial dysfunction by decreasing the toxic load and replenishing our cells with proper phytonutrients and micronutrients.

Cynthia Hildreth: When having both lupus and rheumatoid arthritis is there a difference in the flare up?

Generally autoimmune flare ups include fatigue, weakness, and pain. RA flare ups mainly involve the joints, so the pain can be more joint related and if severe enough, you’ll begin to see irreversible joint deformities where the joints will swell and be in severe pain.
With Lupus on the other hand, flares tend to involve the organs, with severe flare ups involving the kidneys, lungs, and the heart, for example. If it does increase pain, it’s due to overall inflammation which can also cause pain to the joints and muscles, but typically no deformity of the joints will be observed.

Emily Logan: I have two questions . First what can be done to help lung function? I’m currently on albuterol through nebulizer and Breo inhaler. These help but not for as long as they should most days . Second, what do you recommend to promote healthy eyes ? Connie, thanks for taking time to make these videos and answering our questions.

Albuterol is typically used for Asthma, and if you’re using the nebulizer and breo inhaler, your lungs must be affected. Like anything else, the inflammation is what tends to constrict the air passageway and the inflammation from the toxins in the air.
There is lots of great research to prove that a therapeutic dose of quercetin (a phytochemical in fruits and vegetables) effectively helps with this.
But same thing: boost your gut health, decrease the toxic burden by eating healthy foods, increase quality fish oil to decrease inflammation, take probiotics, curcumin and CoQ10. I also would recommend an essential oil, like eucalyptus and peppermint, diffused through a good quality humidifier at night, as this can help clear the airways.
For eyes, eating a healthy diet is key in promoting good eye health. The eyes are the most metabolically active organ, pound for pound, so they require lots of phytonutrients and micronutrients.
Lastly to help lung function, it helps to breathe intentionally. A yoga practice helps with this, and exercise will help to improve lung function. Not too much exercise, just enough to stimulate the lungs.

Pamela-Jean Kirsten DeAquair LaScola: My question is as follows- for the past two years I have been experiencing several symptoms that fall in line with thyroid conditions. Upon testing it’s been found that I am at times hyperthyroid and other times hypothyroid. Either way my tests do not come back normal. In fact, my last TSH level came back at 0.01! According to lab result slip the normal range is between 3.5 and 5.5. At other times this test has come back at 15. My T4 and Free T3 came back within normal range this time. I have seen two different endocrinologists regarding this problem, and both give me the same comments. They feel this is suppression as a result of being on steroids. Is this possible? And if that is the case then why for the previous seven years when I was on a much higher dose of prednisone 40-30mgs daily were my thyroid tests fine, and now that I’m only on 10 mg daily these are my findings? And lastly, even if this is the case you still have a thyroid issue taking place and symptoms being experienced so why isn’t treatment being offered? Symptoms I am experiencing for the last two years- hair loss, brittle hair, weak and brittle nails, both weight gain and weight loss, protruding eyes, chronic diarrhea, dry skin, palpitations, a feeling of extreme restlessness, terrible heat intolerance, and the list goes on. I have been tested for Graves Disease as well as Myasthenia Gravis, both Normal. As a side-note I do have four nodules on my thyroid and had them biopsied this past June because of their size- all were benign. Thank you.

Pamela, this is actually a very good question. One that really sets apart the Functional Medicine approach to treatment vs Conventional Medicine. Our hormone pathway is called the stereogenic pathway. It is a complex pathway that pulls all the hormonal pathways together. What’s important to note here is that your adrenals, thyroid, and sex hormones all are interconnected and affect one another. Your adrenals are suppressed on high doses of prednisone, and at 10 mg, that is still high enough to replace your adrenal function, meaning that your body is relying on prednisone for corticosteroids. There’s no “balance”in your system at this moment and based on all that you shared, you may also have malfunctioning metabolic pathways due to genetic defect in your ability to metabolize, or inefficient detox pathways due to micronutrient deficiency.

Darlene Starocci Haise: Can Plaquenil make you hurt more?

We know that we have genetic variations in our ability to metabolize certain medications.
As I blogged about in the past, there are two phases  required to get the toxins out of our bodies.  Phase 1 is where we need to break down the toxins in their elemental forms, and to do so we need certain enzymes that are genetically coded.
We now know that many of us have single nucleotide polymorphisms (SNPs) that prevent the proper metabolism of certain medications.  This is the reason why medications and foods have such a wide array of effects on each one of us.
One thing we know for sure is that for us autoimmune patients, our metabolism (our ability to assimilate foods, toxins, and medications that we are exposed to) is compromised.  We have an enemy within that we are constantly trying to process through our bodies.
So to answer your question, generally, plaquenil is considered the least toxic drug, but I have lots of patients who do experience such side effects, pain and headache being two of them, so I’d say yes, if that’s you, then it certainly can cause that pain.

If you would like to have a question answered on our next Lupus Q&A, comment on this blog or post your question on our Lupus Rebel Facebook group.

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