MY STORY

MY STORY

I think my ilness has been with me since my babyhood  and I really belive in intestinal microbiome dysfunction. First my mother was to give me incomplete one and second medical geniuses destroyed my unique, protective bacteria. Supposedly it’s the way I started suffering from such dysfunction as autoimmune disease. On the way some eaten scrap with pesticides, growth hormones,  flavour enchancers, syntethic sweeteners and preservatives, a bit of stress, maybe genetic tendency and here is the diagnosis: primary sjogren syndrome (PSS).

Generally autoimmune disorders are characterized by antibodies in a bloodstream that shouldn’t be there. I’m talking about ANA (Anti Nuclear Antibodies) , autoantibodies directed against  your own body cells.

 A kind of protein excreted by stimulated B lymphocytes in a mechanism of humoral immune response we call antibody. These immunoglobulins defend organism mainly against bacteria and viruses.

I had been ailing since babyhood. In 80’s and 90’s antibiotics and injections were the order of the day. I got sick to the point that my mother said such amount od medicines was not normal and started seeking for help closer to the nature. For as long as I can remember she used to treat us with linden blossom tea with raspberries and “amol”. I was very lucky to have an aunt”being on exile”  who in a concern of my health used to send probiotics in parcels.

I remember every time I even had the slightest cold, it was obvious for me to have something on my skin. Itchy rashes or scalp wounds which were scabbing and my mother used to slush it with aloe vera plant that she grew on the window sill. Skin is my weak point since childhood. I often experienced abdominalk pains and intestines problems. Supposedly I was diagnosed with mumps two times and with suspicion of second varicella I was sent to isolation ward after having eaten sorrel soup! I was so sensitive to nickel and chromium, my skin was scratched to blood in a point that metal had contact with – buttons in jeans, shoe buckles, chains, earrings, rings. In addition, allergy to the balsam of Peru meant that I could not use most cosmetics, let alone fragrances, washing powders and fabric softener. In addition, I had a number of unexplored food allergies, which I got used to because of poor clinical symptoms.

I often had fossilized hands and feet. When it was winter and I was going to school to school, my mother used to shout at me, that around the corner I used to pull off my cap, scarf and gloves because I had red frosted hands. This, of course, was not true. As the fifteen-year-old for the first time on a cold day, I noticed that in one finger on 1/3 of it’s length my blood was cut off. The finger just turned white! When I was entering the warm room, the capillaries were expanding again, the blood was returned, but the skin was becoming beccoming burgundy and sometimes violet-purple and painful. At that time I did not realize the existence of something like Raynaud’s syndrome. Over time, the problem has deepened and 15 years later it happened that on a very cold day it cut off all five fingers from the whole hand all along their length!

In the third grade of high school, I was called to the school nurse’s office, who applied me a tuberculin test injection according to my vaccination calendar. After that, the ride started without a stick. The test should swell up to about 2cm maximum. Mine swelled into a huge bubble together with my face. Additionally wandering rash , first on the top of the body, later the torso and arms eventually settled for a long time on the legs. Horror! I had an annual release from physical education classes because I was unable to get undressed. Dermatological treatment for a year and the wounds on the legs were fading very slowly. Since then, I feel that my body has been awakened and upset. When I finished high school and passed my final exams, I got into college. The first year went somehow  but during the second I felt terribly weak. I was explaining everything with many hours of classes in the chemical laboratory, but something was up.

I was sleepy all the time, I had no energy for anything. In 2003, my late grandfather took me to his doctor at DCTK in Wroclaw, where he had his lymphatic lymphoma treated for ten years with . Bone marrow biopsy was taken, after which I was not told much and nothing was explained. Two more years passed and in 2005 the bone marrow trepanobiopsybiopsy was repeated. The professor who consulted me then told me that it was an autoimmune syndrome, antinuclear antibodies were positive, leukopenia and thrombocytopenia are present.

Whatever it was for me at that time, did not seem like a drama because I did not suffer then so strongly from skin and intestine issues. I thought that I was under the care of doctors and nothing uncontrolled could happen. Nevertheless, I used to control blood parameters every six months. Well, this is very misleading because if I had changed my life ten years earlier, just when I was just on the autoimmune spectrum, I would not have been diagnosed with full-fledged Sjogren Syndrome , and wouldn’t have had damaged salivary glands, dry eye syndrome and chronic kidney failure. Antinuclear antibodies may appear in the blood for a few or for a dozen years before organ destruction and they are a warning signal that something undesirable is happening.

In 2008 I got pregnant for the first time. Overall, I endured it very well, except that I started to look very bad and had incessant bacteria in the urine. I suffered from chronic bladder and skin inflammation, especially of the face skin. The baby was developing properly and my blood morphology jumped up to 7,000 leukocytes. I had a variety of skin changes including violet-purple stains, scars and acne, and this bladder. During pregnancy, I took three antibiotics, which did not give any effect. After I gave birth to the daughter, during breastfeeding period, the blood test results were correct, just normal. After I finished breastfeeding it began to weaken. In 2010 I got pregnant again and it was the same story. No vomiting, normal pregnancy, only the bladder, e. Coli and dermatitis.

After these incidents, my body was exhausted. I looked terrible and I felt that way too. Without make-up, I even could not leave house because I was ashamed so much. Other parts of the body may always be covered with clothes. Besides, I was wearing a lot of unnecessary kilograms. I wanted to do something with myself and went to a dermatologist. Today I know that it was the stupidest decision in my life because I let myself be fed with an antibiotic once a week for almost a year without any probiotics. Additionaly some antibacterial face balms and acne began to disappear. Unfortunately, not for long. Reborn like a phoenix from the ashes and with redoubled power and I was a nearly thirty-year-old tormented woman who was told that it was the fault of hormones after pregnancy! Total nonsense because every wise dermatologist knows that acne is not only a skin disease but intestinal problem.

I struggled with these changes on my skin for a long time, I thought that the pharmacological therapy in 2014 at the rheumatologist would finally disembarrass me from this stigma of monstrous appearance. And I will point out that I still struggled with bladder inflammation. All the more the family pressure, that I was irresponsible because I did not take my medicine, I would lead my body to lymphoma, which is a complication of my illness. In April 2014, I underwent standard therapy for autoimmune diseases, i.e. steroids and immunosuppressants stultifying the immune system. They say fading-out, but I say stultifying because it’s a disaster. Tablets were intentionally fetched from Germany because they were supposedly better than the substitutes available in Poland. Then it was Calcort 6mg instead of Metypred and Quensyl or hydroxychloroquine instead of Arechin in the form of chloroquine. I had been taking medication for 8 months and gave up taking them after I noticed that the treatment plan was getting out of  doctor’s control. Mrs. “doctor” herself was surprised that even anything in the blood morphology does not vibrate upwards, just decreases menacingly. It was the worst winter during which I was sick all the time and my condition only was getting worse. White cells that were stable in the area of ​​3.5 thousand fell to 1.6 thousand, while platelets barely oscillated around 100,000. And those bladder inflammations. To this chronic conjunctivitis, stabbing in the joints, nasty gray earthy and eternally red and spotty covered skin. 

At this point of my life, my so-called mission began. Searching for solutions alone, I stopped visiting rheumatologist and taking pills. Distraught with my condition of physical and mental health, often crying because of powerlessness, I began to go to empik and bring books home. Books absolutely changed my life and the way I perceive my position in this whole situation, but it was a long way through torment. Thanks to the books and stories of other people I regained hope for a better tomorrow, I understood the true face of the medical service. Books carried me into the world in which I dreamed about getting better and thanks to them I wanted to achieve my goals. At the same time, I gained valuable knowledge, passed on by very wise doctors who after several or several dozens of years of scientific research could admit that the theory they were taught was wrong or incomplete.

In June 2016, I started the first attempt to switch to a gluten-free diet. I was preparing to it about half a year before filling out the pantry with the necessary products. Refined trans fats were the first thing I threw out of my kitchen. I replaced them with olive oil, cold pressed coconut oil and a little bit of clarified butter. The beginnings were very difficult for me, disappointing and discouraging. However, after nearly four months I went with a flow and also gave up eating dairy products. I met with terrible criticism from the point of my family. They kept nagging me for not eating dairy and gluten, kept saying I would be malnourished. However, despite the difficulties I met, I was adamant and I found the power to get it all my own way. I did it very cunningly because in a quiet way. I just learned to cook in small steps and smuggled substitute products into the kitchen. For the offer that” When you eat a little, nothing will happen to you” I used  to answer politely “NO thank you, I do not eat that! ” I baked sad layer breads, I fried smashed pancakes, I did not make any cakes because I did’nt have any knowledge how to do this. I used to make gluten-free noodles, we used to drink fruity cocktails the whole family. Everything seemed to be so… uphill but the return to normal life justified the means.

Despite following the diet for about 11 months, I have not achieved satisfactory results. My face still looked weak. I went to make a blood test to show if I had any type III IgG dependant allergies. It cost me a fortune of PLN 1,500. In May, I picked up the outcome and after opening quite a large book with the analysis of the results, I felt that I got another strong blow. Allergy to bananas, pineapples, asparagus, pine nuts, barley, very strong on guar gum, vanilla and hen egg. I was thinking what to do with it then I would not even eat a pancake. And it happened, still on the same day I brought home a book that contained a recipe for a egg-free pancake and that’s it! I included a quail egg in my menu to not get rid of this dense nutritional power. After pushing aside all of allergens, the skin cleared but I still had poor results. To continue a fight I went under the fashionable diet in autoimmune diseases, the so-called AIP Paleo. And I will say that it was probably the worst diet I have ever dealt with. It put me into a great depression and regret feeling that there was such a poor menu. This is the most unfair and unjust form of nutrition, which widely spreads on the excluded foods, mainly due to lectins. No grain, even gluten-free, seed, nut, no oil from grains, no pepper, tomato, eggplant or potato, on which we are brought up! Constantly meat, fish, seafood, fat, fruits and vegetables. Summarizing, my diet eliminating allergens + AIP Paleo led me to exhaustion of all the last power I had in me. I held out 4 months and then in November, already preparing for Christmas, I started with a cup of tomato juice to reduce the pounding of my heart and returned to the gluten-free diet. I spent Christmas happily, preparing vegan cakes and gluten-free kutia. I started coming back to life.

In December 2017, I received an email from the Institute of Microecology, in which my Type-III allergy test was executed, that Dr. Gałęcka published a book about diet in autoimmune diseases. As I immediately bought it as quickly I read it . I also arranged an appointment in Poznań immediately. Later, by coincidence, I was staying at a hospital ward in Poznań, where I was attending control tests and chronic progressive renal failure was discovered. The glomerular filtration rate calculated on the basis of the mathematical formula with the substitution of the current blood creatinine level (eGFR) did not want to grow despite hydration with NaCl and was close to 45% and creatinine was too high. Then I could  pay with further destruction of my kidneys and I agreed once more to undergo pharmacology and I also reduced eating meat. Taking medicine was a condition the doctor put me to continue treatment in a private clinic. I had to start taking medication to stabilize the disease. The truth is I have never come back there.

In February 2018, I started with 8mg of Metypred. After leaving the hospital in March, I came to a rheumatologist in Wroclaw. This doctor reduced me Metypred to 6mg and told me to take Plaquenil 200mg of hydroxychloroquine. I barely looked back and holidays came, I checked my blood test, but my morphology was worsening. In June positive anti-cardiolipin antibodies in the IgG class were detected and I was exposed to to take pills with acetylsalicylic acid. I obviously did not deal with it and I used natural substances such as: gingko biloba, turmeric, ginger. I also did not get a stroke. In September, further studies showed an increase of these antibodies twice. Lupus was in the hindsight, all the more that each doctor talked about kidney involvement. Lupus, which was induced under the influence of the medicines I was told to take. In addition, the morphology looked tragic (1,800 WBC and less than 100,000 platelets) and I have been suffering from cystitis again since August because of a million e.coli in urine! Taking drugs did not lead to the goal of improving morphology, but on the contrary, it led me back to the edge of exhaustion.

In September, against my family, I gave up taking tabletess secretly because I felt so bad after them. I wanted to improve my mood and results with diet plan again because it somehow stabilized my condition and leucocytes at the level of at least 3 thousand. I came to a gluten-free, vegan and low-fat diet. It was warm and there was a season for various fruits and vegetables, so I was mainly fed raw, green cocktails with kale and spinach with the addition of blueberries picked up at my mother’s garden, blackberries and other wonderful fruit antioxidants. I survived the summer, I even got better, my skin improved. Wonderfully when I stopped eating meat, acne of unknown origin disappeared. But there was still something wrong. My face still was sometimes itchy to me, I did not know why. I wanted to improve my blood morphology parameters.

In November, by chance, I came across Max-Hemp in Jędrzychowice. It is the first center of cannabis treatment in Poland  located in the the old village palace . To this only 25km from my place of residence! I thought abut it as about a wonderful feeling and I made an appointment for a medical consultation to a young lady doctor interested in Chinese medicine and acupuncture. I did not have any expectations towards the doctor because after fifteen years of walking in their offices I knew how it worked. And here I was very surprised, and my husband’s jaw dropped down and he asked her only where her interests came from? To which she replied that she had to not only cure but she had to start to be effective in treatment, otherwise she would lose half of her family. Oh, and this is the slight difference between a Mrs doctor herself and a real doctor. Recommendations:

  1. Good morning deworming – and here I had to take medicine from the pharmacy as the only one. Zentel three tablets every two weeks each. To this Vernicadis – herbal alcohol-based anthelmintic for a week, later a week break and so three times.
  2. Instead of Quensyl, I had to start with something that would have immunosuppressive effects on my confused immune system. The product was 15% CBD oil, which I was to dissolve in 1ml of edible oil and take 1ml of this mixture 4 times a day.
  3. Vitamins and minerals in megadoses:
    • Witamin D3+K2MK7. First the level test (Mine was 17), then for the first month 40,000UI + 600mcg daily. After a month, another examination (raised to 134) and reduction of the dosage to 10,000UI + 250mcg per day (podkowa.eu)
    • Provitamin A – beta carotene from carrot 30,000UI per day (podkowa.eu)
    • Natural vitamin E in the form of d-α, β, γ, δ of tocopherol and tocotrienol with the addition of selenium yeast (podkowa.eu)
    • Selelene in the form of Se-methyl L-Selenocysteine ​​200mcg – one capsule daily with breakfast in the morning (Life extension)
    • Iodine in the form of Lugol’s liquid (aqueous solution I2 + KI) orally, for the first month 20 drops in a glass of water, in the next month 10 drops in half a glass of water. It is best in the morning because in the evening there may be problems falling asleep. I could not drink it, it tasted like chlorine, so I smeared it into my skin. There is also available product of iodine complex in tablets of 12.5 mg calculated as iodine (5 mg I2 + 7.5 mg KI) – and this is what I burped with like chlorine” (podkowa.eu)
    • Organic zinc in the form of citrate, gluconate and picolinate – 25mg daily between meals, so as not to block the absorption of copper. Zinc and copper are antagonists. (Aliness)
    • α lipoic acid – 200mg active R enantiomer – 1 tablet daily with dinner (aliness)
    • Microbacti – a probiotic in a pullulan capsule that does not dissolve in the stomach – 1 tablet with dinner (ForMeds)
    • Magnesium (preferably citrate orally or bath sulphate) ForMeds + vitamin C. (acerola + L-ascorbic acid mixed 1: 1) + taxifolin (dihydroquercetin) in the evening (Life-extension).
    • omega-3 acids in the form of bioesters (Omegaregen Original)
    • Vitamin B complex – it is important to be methylated, 1 tablet with supper (aliness B-50 methyl)
    • silicon with boron – Silor B three times a day for 15 ml
    • Naltrexone – 1 tablet at bedtime for the first month 3mg, later 4.5mg
    • D-mannose – half a teaspoon per day to help with the e.coli ejection from the bladder (Swanson)

T this drips with vit. C about 50g per week with the addition of 600mg of glutathione. For me three times a week  such a drip of 15g due to kidney failure. Failure suddenly disappeared after the treatment. Bioresonance The first series of ten treatments twice a week for a two-hour circle, second series three times a week. Acupuncture once a week. It lasted about two and a half months, since November 23, 2018 to February 8, 2019. Since November to mid-January, I took 20 drips with vit. C and 10 bioresonances, after which the drip cycle changed to: Monday-solcoseryl for kidney glomerular regeneration, Wednesday – ozonated physiological saline to kill pathogens and Friday 15g vit. C with 600mg of glutathione and a bioresonance cycle three times a week.

On the tenth of February medical consultation. The end of drips because of a vein problem and, secondly, you should not continue such a treatment longer than a moment you notice an improvement in. End of bioresonance, after finishing all capsules with trace minerals, discontinuation of supplementation and vitamins can be taken throughout the year. Keep the 25-OH metabolite at a level of at least 100 ng / ml and control it with ANA3 and anticardiolipin antibodies. It’s best to do this treatment twice a year, calm down, do not overdose blood tests, practicing yoga is a great de-stress prevention.

After the end of drips and bioresonance I continue to take acupuncture with the fact that once every two weeks and I go to the hyperbaric chamber once a week for 1.5 hours and take vitamins. ADEKB vitamins can be taken all year long and even should.

This is a summary of my results last year. Ever since I finished vitamin therapy, I have not ckecked it. I feel great. Perhaps the results do not look great but these are only numbers that change every day.

Conclusions:

  1. Since the application of Metypred in February 2018, an increase in antinuclear antibody titres by one-tenth has been reported (from 1: 1000 to 1: 10,000).
  2. After the application of conventional pharmacological therapy with Metypred and Quensyl, the appearance of anti-cardiolipin antibodies in the IgG class and their double increase in September 2018 was noted in June 2018. It is suspected that lupus has been induced ??
  3. The change in the diet to vegan definitely decreased the level of creatinine in serum.
  4. In addition, drips with vitamin C and glutathione significantly improved kidney function, which can be noticed in the creatinine value much below 1 mg / dl.
  5. The rheumatoid factor Rf, which in 2017 was nearly 50 IU / ml in 2018, decreased significantly when taking steroids, and then increased again.
  6. White blood cells in 2017 during the diet remained stable around 3.5 thousand. During steroid therapy they significantly improved their parameters but when hydroxychloroquine was included they started to decrease dramatically. In August, in the urine test, numerous e-coli bacteria were found what that caused chronic cystitis lasting until the end of January 2019. I have had two fever infections just after the start of vitamin therapy. First in early December with a fever of about 38 degrees. However, the organism was still too weak and e-coli could not be eliminated from the urine but the titer dropped to 1000. In mid-December 2018, leukocytes reached their peak activity level during the second attempt to attack e.coli with fever close to 40 degrees for a few days . Finally, the infection with own intestinal bacteria has been overcome physiologically, what indicates the efficacy and selectivity of produced neutrophils. The process was supported with vitamin supplements and vitamin D3 levels in the range recognized by allopathic medicine as toxic. The conclusion is also that the use of hydroxychloroquine excludes the activity and precision of neutrophils aiming at elimination of pathogens – the defense system is stupefied.
  7. During natural therapy, there was an increase in the amount of platelets.

UPDATE 14-06-2019

All in all, I don’t know where to start. Maybe I’ll start with the fact that the situation forced me to do a basic blood test at the beginning of June 2019. I needed to know my creatinine level to see how much vitamin C my kidneys would pull again.

On May 24-27, together with my husband and son, we participated in classes in an association of psychologists specializing in diagnosing children growing in the autism spectrum. And yes, before You ask, my son is autistic. It was very warm these days, there were games on the grass in the garden and hide and seek, so the bushes went into motion. After the memorable day of May 26, I brought home a tick in my leg. To this day I have no idea how he climbed the leg hidden in long trousers super slim “tubes” but he did it and attached to the skin under the knee from the outside of the right leg. During the morning bath on May 27, I noticed a speck of dort on my leg, but I couldn’t take it off, even trying to scratch it lightly. Due to the fact that I bathe in very hot water, the skin was soggy and I grabbed the dirt with two fingers and pulled. You have no idea what I felt when I pulled it out in front of my eyes and saw that something putting it’s feet. I just thought: “I needed it then!

As soon as I realized that it was a tick I immediately wrote an e-mail to my doctor and asked what to do. I could not imagine taking any antibiotic after the work I had put in for the past 3 years to get rid of these monstrous symptoms of autoimmune disease and IBS problems. The doctor told me that at least for the first week high doses of sodium ascorbate (3x50g), when spirochetes may circulate in the blood and herbs against Lyme disease for the first week at a dose 4 times higher than recommended on the package. Unfortunately, my kidneys with creatinine 1.1 could pull only half of it but every cloud has a silver lining. I got a medical order from a doctor, signed up for drip again and took BORELYMA herbs. I would also like to point out that since I started working against the effects of tick bite, I began to feel horrible pains. My tibia bone in my bitten leg hurt and  suddenly such terrible back pain appeared, especially in the thoracic part. The back muscles were so sensitive that I thought I would go crazy. It lasted a few days and after a second drip with 25g of vitamin C pains started to go away.

I also went to do a blood test … and I was very pleasantly surprised! Platelets practically normal (130,000), leukocytes close to normal (3,600), but neutrophils, which I always had a deficit, are fantastic (1.6 thousand). But vitamin D3 flew down. I take 10,000UI a day and the level from 134 dropped to 50 in three months! Therefore, one can deduce  how much a sick person needs and uses it and we should not be afraid of taking it. It is necessary to do it wisely and preferably under the supervision of a prudent doctor with a wider view on the human body than dismembering it and pretending that each part should treated individually. I will have to check the level of antinuclear antibodies and anti-cardiolipin antibodies in the IgG class.

As I mentioned earlier, after I completed vitamin therapy, I started hyperbaric oxygen therapy and continued it together with acupuncture. I go to the chamber once a week for 1.5 hours. The chamber I use reaches 1.5 ATA. I decided for it it only because I read that it strongly increases the level of CD34 + stem cells and acts immunosuppressively. In women, stem cells are renewed for about 7 years and in men for about 8. I wanted to speed up this process because in aggressive auto-immune disease time is limited. You can pay with terrible tissue damage, malfunction and depression.

I can’t say what exactly changes during this type of treatment. Since March 16, 2019 until today, I have had 10 sessions  for an hour and a half in the hyperbaric oxygen chamber . I can say this:

  • I can’t remember in recent years I had such a power and a clear mind since morning to evening.
  • although it is not as tragic as it was, the skin condition is constantly improving
  • definitely less red beetroot dye can be seen in my urine, which would suggest, by leaning to the theory of the leaky gut, that the intestinal barrier has been sealed
  • cystitis is completely imperceptible, it can be seen through a small amount of leukocytes in the urine.
  • Digestive problems are negligible
  • my hair, eyebrows and eyelashes started growing and I gained 6 kg of body weight
  • The skin became golden-olive as it was before
  • during the 9th hyperbaric session I felt saliva flowing from my damaged salivary glands – and this was the only time I felt something noticeable.
  • the papilloma that lived on the toe of my left foot simply went away. I tried to fight it many times before but it kept growing back.

Sorry for the mistakes, I use international English! If you would like me to make any changes , please let me know!