Autoimmune Disease? Polychondritis?

Since my vitamin D (D3) had tested in the normal range, I was clueless about what the problem could be. But the symptoms were severe bone pain, mainly in the cartilage of the rib cage and by now on both sides, intense pain in the throat and whole neck, severely inflamed eyes, the tips of the ears were red and inflamed, thoraccic pain, leg pain, wrist inflammation and the beginnings of arthritis in the hands. I was clueless and back at the hospital I got a referral to a rheumatoid doctor.

The rheumatoid doctor asked weird questions about when I had the most energy - was it the morning?, whether I had fingers that turned white (Raynaud's syndrome)? ... They were weird questions, but eight out of ten questions I answered "yes" to. They were the right questions. He examined my arms, swollen wrists, noting the sensitive forearms and ordered blood testing.

Two weeks later I was back in his office. He was happy to inform me that I had no rheumatoid problems, that the bloodwork came back normal. I did not test positive for Rheumatoid Arthritis or SLE (lupus) and my rheumatoid factor was 7 so I was clearly under the 15 "normal" range. Wow! I had only the strict vegetable diet to credit for that (I learned about lifestyle management at Wildwood Lifestyle Center & Hospital in Georgia), but he was completely intollerant of ANY treatment other than NSAIDS or immunosuppressants for ANY rheumatoid problem ... absolutely not ANY! He did say that he had thought I had strong clinical rheumatoid problems ... but with the bloodwork, no, there was no rheumatoid problem. Goodbye.

I was stunned! He knew all the right questions, and the inflammation was horrible, and that was why I still maintained a strict vegetable diet ... just to cope with life, and really, I was barely coping. [While at Wildwood Lifestyle Center I had met a severe rheumatoid patient and at the end of her intensive 2 weeks of therapy, her RF dropped below 15 too, but that didn't mean she climbed out of the wheelchair! She was able to get up and down a bit but walking around just wasn't an option yet. Our doctor even said that the RF test was a marker test and should not be used strictly for diagnosing disease...]

Possibly Polychondritis?

Via a long chain of emails, a nurse friend thought I should look into Polychondritis, a horrendous autoimmune disease that slowly destroys the cartilage in the chest, nose, ears and throat. I had all the symptoms except with the nose cartilage, where usually early signs of the disease are first apparent. I needed answers so went back to the rheumatoid doctor every two weeks for the next month or two. We did NOT like each other. His diagnoses were based solidly on testing, and he was intollerant to anything beyond what tests scores showed. Some of my symptoms, as I tried to tell him, were definitely reactions to food ... dead end there. However, from the tests coming back negative of any detectable problem, I knew that I didn't as yet have a flaming autoimmune disease, and that there was still hope!

Thank goodness polychondritis was not the problem, for two big reasons: (1) it's a horrible degenerative and painful disease, and (2) I would definitely have to find a doctor in Korea who believed that a controlled diet means a controlled disease ... and not one doctor at the hospital I met, except in the endocrine/diabetes clinic, put much thought in diet controlling disease. [Thank goodness that with the coming of spring I was getting more sunshine, which even at the time, I knew made me feel better, and along with the strict diet I was eliminating some of the big symptoms through time and plodding diligence. I was oh so slowly getting better and the doctor and I both agreed not to see each other again!]

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Months later when my pinky finger on my left hand started twisting from knuckle inflammation, another doctor recommended I go see that rheumatoid doctor again. No, no, no, no flaming way! I upped my studies and searches on diet and health and a couple months after that I was able to pinpoint candida as the problem ... and with a "diagnosis" finally, I was better able to adjust the vegie diet accordingly which, hurray, is the answer!

Vitamins A & D testing ... March 2010

Vitamins A and D are fat soluable vitamins, and because of this, they are easily stored in body fat and so taking supplementation can be a risk. I decided to get vitamins A and D tested before I started taking any supplements for them, and since my symptoms involved the nerves, getting some other key vitamins checked seemed like a good idea:

Vitamin B1 (thiamine) - water soluable and can in fact change hourly based on food and water intake, hormones and other factors. An under-the-tongue saliva test would have revealed this more quickly and probably more economically, but I wasn't aware of such a test at the time. B1 plays an important role in nerve responses and needs to be assessed in all people with hyperthyroidism, an autoimmune condition for which I was still in my critical two-year off-medication remission.

Vitamin B6 (pyridoxine) - also water soluable and also aids in maintaining the nerves; necessary for the absorption of vitamin B12, and necessary for the production of hydrochloric acid and magnesium. Although this vitamin can pass through the body in as little as 8 hours, I wanted to know if I was assimilating it, especially since the vertical lines on my nails reveal that I'm not assimilating my vitamins ... but, which ones? B6 is vital for the nervous system!

Vitamin B12 (cobalamin) - water soluable but the only B vitamin that can be stored for periods of time. Supposedly it would take 6 months to deplete a normal B12 amount, but an imbalance wouldn't show up for about 5 years when the body was beaten with trying to make up for the chemical imbalance. B12 maintains a healthy nervous system as well as providing energy. A properly functioning thyroid helps B12 absorption. For the vegetarian (which I have been borderline for years), getting B12 tested regularly is a good idea.

Vitamin A - a fat soluable, easily stored vitamin in the body. Known as the "eye" vitamin, it should also be known as a vitamin making a strong immune system, helping to maintain the bones and the enamel on the teeth, as well as responsible for maintaining the mucosa. I found this out only 2 weeks ago; if I would have known this, the ulceration in my cheek mucosa could have been helped months ago!

Vitamin D - fat soluable. Because of my rib and cartilage symptoms, this was the vitamin I was most eager to get tested! Also important because I am lactose intolerant and loathe milk; however, I could eat a tiny amount of cheese or an occasional yogurt didn't bother me much, at least until the asthma started, and then I became very sensitive to all milk products. There are a variety of vitamin D blood tests - vitamin D3 (basically a measurement of how sunshine is being assimilated and stored within the body); D2 (a measurement of how vitamin D from food like milk and dairy products is being stored; and vitamin D 1,25 hydroxy (a comprehensive measurement of both vitamins D3 and D2) and this should be the test administered for checking for a deficiency. But little did I know I was given the wrong test .... (more on this later!)

Vitamin E - fat soluable but not stored in the body for an extended period of time, unlike popular belief. E maintains healthy skin and hair, aids in supplying oxygen and works as a natural healer. Since vitamins A, C and E work synergistically, I thought it important to get the Vitamin E test along with the A.

Bloodwork outcomes [vitamin ... my bloodwork ... the accepted range]:
B1 .... 108.1 .... 59-213
B6 .... 54.6 ..... 20-202 *
B12 ... 511.49 ... 200-950
A ..... .42 ...... .36-1.2 ***
D3 .... 57.58 .... 19.90-67 ***!
E ..... 33.8 ..... 11.6-46.4

My analysis of Vitamins B6, B12, A and D:

Vitamin B6 : I think the B6 should have been higher, especially because I was eating an 80% vegetable diet at the time. I realize I had to fast for 12 hours before taking the test but it does seem to be a bit low considering I was REALLY packing the vegies in.

Vitamin B12 : I was actually pleased with the outcome of the B12 test as back in September 2008 I had requested a B12 analysis because of early neural symptoms. Outcome was 386 or 368, and deemed normal by the extremely wide American standards of 200-950. A month later (October) when I was at the Wildwood Lifestyle Center that focuses on nutritional healing, my physician told me that there are actually symptoms appearing when the numbers drop under 400, but this is not mainstream knowledge. Later I was to discover that Europe and Japan do not have the lax standards of America but hold that 500-950 and 550-950 respectively, are within the normal range! At the lifestyle center I was encouraged to take sublingual vitamin B12 drops to boost my numbers, and just over 6 months later, the numbers had climbed to 511!

Vitamin A : Vitamin A was borderline low, but the testing physician told me not to worry about numbers in the normal range. Hmmmmmm, especially when I've noticed the "normal range" varies a bit between testing clinics even within Korea. [Ergh, but I say this months and months in hindsight: Vitamins A and D are crucial for people with candida to test because the candida shape-shifting bacteria-fungus detroys both of them.] About two weeks ago I got re-tested. I figured numbers had fallen because on my four-month very strict candida diet I have been unable to eat foods that are rich in vitamin A like high glycemic carrots and sweet potatoes, starchy winter squash ... The test of two weeks ago came out at .26 showing a huge deficiency. Since, I've been taking vitamin A supplements along with vitamins C and E because my mucosa is horrible looking and easily swells when I eat foods. I've got to get the numbers up as I have become sensitive to foods like, surprisingly ginger, coconut oil (changed brands and then I was fine) and most oils, and then of course the more mainstream allergenic foods.

Vitamin D : I was completely surprised that vitamin D tested normal!!! From all that I had been reading online, a deficiency in vitamin D plays a BIG role in rib and even cartilage normalcy. I was stumped, and figured that since the vitamins were normal, maybe there was a huge underlying medical problem ... like an autoimmune disease ... It would be 4 months before I found out that I had been given the wrong vitamin D test for analyzing deficiency! In those 4 months I could have started healing much sooner, not run like a injured rabbit to several bone specialists - none of whom even mentioned vitamins - and saved a lot of money while enjoying much, MUCH less stress.

Bone Pain and Rib #10

By the end of 2009 I had seen a series of chiropractors for intense rib and thoraccic pain. In December these doctors had started commenting on my odd rib movement, because more and more ribs were moving. So in February 2010 when I was forced to wear a rib belt (and then later, two belts) to prevent rib movement of right rib #10, I went back to the hospital (I had boycotted going since finding out about the steroid) for x-rays of the lower cartilage that I said was breaking. [In fact, tearing. Bones break and cartilage tear, and rib #10 was in fact moving a lot and as a result causing myofascial pain in the right lingual area, the pain of which I was still attributing to the steriod and subsequent inflamed lymph nodes of months before.] Of course cartilage hardly shows up on x-ray so of course nothing to make a diagnosis on could be seen - waste of time, waste of money, what were the doctors thinking? I demanded a CT scan of the rib cage, and then had to go in again for re-taking it (and get loads of extra radiation) because the technicians didn't scan the lower cartilage area, the affected area - what were the technicians thinking? The technical report of the scan was "tortuous change to rib #10" but not one of several bone specialists I then went to acknowledged that this was a problem! WHAT WERE THE DOCTORS DOING? NOTHING!

This is my March 12, 2010 copy of my chest CT. By the time I had this CT scan, my rib cartilage was hurting badly in a number of areas. The areas I had complained about for the longest was right rib #4 where it meets the sternum but by this time my chiropracter acknowledged that three of the right ribs and two of the left off the sternum were slightly dislocated (soon afterwards, another left rib off the sternum also slightly popped up). Also, rib cartilage felt crunchy under the right breast so much that I stopped twisting in any way, and when the right rib #10 got so bad that I had to even stop wearing the two rib belts (damn, it was bad) I didn't dare move even a millimeter to the left or the right. Rib pain was on the left too, but that pain was manageable. Because the body has more lymph fluid than blood and both fluids need to be circulated so a person can recover more easily, I did make myself walk outside in the cold every day that I had energy. Exercise is important and walking without swinging the arms in the cold, cold weather seemed to ease some of the pain. [In hindsight, I realize this was what was boosting my vitamin D. Getting the regular doses on my face for 2 or so hours a day is probably what slowly eased the pain and was probably the best thing I could do for myself.]

I've finally decided to go ahead and post my personal information. Maybe someone, a medical student perhaps, will benefit from this. Anyway, note the pieces of something that very much look like cartilage fragments falling under the right rib cage. That was where I hurt, hurt, hurt, and when the doctor (the one who prescribed Xanax for me and told me to see a psychiatrist) didn't address this and it's in the area of my complaint, I asked him what that was. He said, "Artifacts." I asked, "Artifacts from what?" He looked at me like I was stupid and never said anything. He did read the analyst's comment to the CT scan, "Tortuous change to rib #10." That was all. Neither he nor any subsequent doctor ever addressed this as a problem!



I was starting to get more and more aggressive about finding my problem, so early in March 2010 I had already gone to a private clinic and had ordered a hair analysis, a complete nutritional analysis as well as blood work on 6 vitamins: B1, B6, B12, A, D, and E. [This was the first step in me becoming my own doctor.]

Candida's Illustrous Beginnings

July 2009 was the beginning of my long nightmare. It began with a vile panic attack in the middle of the night - intensively scary - and never before experienced. Family members had talked of their panic attacks but me having panic attacks didn't make sense. I had no reason to be upset, stressed or down. I was finishing my dissertation and figured it would be completely written in just three more days, and then I had a great vacation scheduled. Nothing to worry about ... but after a second equally strange and very different kind of panic attack I suddenly was stressed and couldn't concentrate; the dissertation took another 2 weeks. I became agitated, unfocused, lost sleep, and oddly I had developed asthma and intense pains in the side of my left calf and sometimes along the shinbones triggered by heat and direct sunshine. [Candida can affect all parts of the body and it may attack one area one day and then move to another and another; it is only predictable in that it will continue to ravage the body slowly, or in my case, quite rapidly. Systemic candida is very unpredictable ... but I was not to self-diagnosis myself (more on that in future postings) until 1 1/2 years later.]

Doctors, times several, told me I was stressed; a few told me I should see a psychiatrist; one (and because of the Korean medical system at that hospital, I was forced to see him again and again) told me I had anxiety disorder and whipped out his RX pad. I told him I had no reason to be stressed and if I were, I probably had low vitamin B since the Bs play a big part in the nerves. He looked at me like I was on something. Since he was the consulting physician, I was forced to meet him again ... and again. Later, when I developed throat inflammation, he slipped an anti-depressant prescription (Xanax) in among four other drugs to help my reflux, which he said I had (I didn't), among the stomach coaters and other drug cocktails commonly prescribed for reflux problems here in S. Korea. By this time I was accepting his prescriptions to keep him from getting angry so that we could at least talk about the problem, and then I would go home and do research based on what terms and things he mentioned. On the way home I would either fill the one drug that I thought was necessary or just toss the whole prescription. I've rarely taken medicine in my life and have never much believed in their necessity, and especially since living in S. Korea I've become very cynical about the drug world as Korea is known for its over-consumption, dependence and yet high-immunity to drugs ... so most frequently the prescriptions just simply went into the trash.

By September my asthma was flairing more and more and I had developed tremors and strange neural sensations mostly limited to the left side of my body, as well as a whole host of other crazy symptoms. After 3 emergency room visits - one for probable food/environment reaction with throat swelling and two related to vitamin B allergic reactions affecting the heart. [Outcome: no heart attack so I could go home; a later doctor pointed out that my EKG line wasn't steady but not considered "bad". Still later I found the answer: Vitamin B is usually produced in a fermentation process but people with candida become intolerant to fermented foods, and I had soon afterwards figured out that 40 minutes after taking a multi-vitamin B, the heart pain and extreme chest tightness started. I tried several different brands of multiple B vitamins but also had the same reaction. Then in the book "Supplements Exposed" I read that synthetic B1 is usually the trigger to people having multiple vitamin B supplement reactions. Ah hah! So now, to daily maintain healthy nerves and keep my stress low, I MUST eat my B vitamins only through foods!]

Anyway, I finally I got past that doctor and met other doctors: neurologists and a MS specialists, ENT specialists, endocrinologists ... and then the bone pain started. So then I met a succession of bone doctors and ended up in a pain rehab clinic where a compassionate doctor [functioning on the belief that the doctor knows best for his patient who doesn't know what he/she needs] gave me a very powerful steroid injection in my left cheek and two spots in the left side of my neck, after of course my telling him emphatically three times that I didn't want steroids [Oct or Nov 2009]!

So three days later another kind of hell began - lingual tears (in the groin area) followed by the beginning of arteriosclerosis in the groin area, and my lymph system went crazy! I was sent to a cardiologist because of the lingual tears and it was in his office I learned that I had been given a very powerful steriod .... There was nothing I could do except detox myself for months on an even more intense all-vegetable diet. For over four months, everytime I had a fish or a little chicken, the lymphs in my groin, armpits and neck would swell painfully. [Later I learned the nodes in my neck were mostly my salivary glands, which means my adrenal glands were involved. Adrenal stress and liver toxicity, evil results of candida ... as well as other diseases!] My whole system was loaded with toxins - not only from the candida but now also with steroids.

At some point, one of the many doctors gave me a battery of tests, liver and pancreas among them, but all came back within the margins of normalcy ...

ERGH! I was desperate! Those kinds of tests reveal a problem that shows a disease outcome. I was pursuing the source of the problem so that I could hopefully prevent full-blown disease. I already knew that if the liver test came back abnormal, then there would be only about 30% productivity of it left, but wasn't there a test that could show smaller amounts of impairment? And just why was the area under the cartilage of my right side hurting like crazy, particularly the spot under rib #10? He asked incredulously, "Do you think it's your liver?" and strongly recommended I go to the psychiatrist.