The Ripple Effect

Getting older is tough enough.  Watching your body change as you get older is a gradual process.  A gray hair here, a gray hair there.  A wrinkle here, a wrinkle there.  As the days move forward, at least you know everyone else is in the same boat.

But getting older with an autoimmune disease, in my opinion, is far more difficult.  You plunge head first into a scary world, and you imagine this must be what it feels like to be 90.  Losing abilities, taking pills daily, watching your body change at a very fast rate can be not only frustrating and painful, but detrimental to your mental health.  Each day is different.  You might notice new rashes on your skin, new bumps or bruises, or another task left uncompleted because of lost ability or weakness.  I remember clumps of hair falling out in the shower.  I felt sort of like a cancer patient.  The kinds of things you go through are just not meant for daily conversations.  So you feel alone and trapped in your own skin.

Luckily however, I have been able to get my Rheumatoid Arthritis under control with alternative medications that don’t have side effects.  My hair no longer falls out in clumps.  I rarely get new bumps or rashes.  And I am able and agile enough to once again live a full and productive life.

But that’s not why I’m writing this post.  This post is about the unknown and that gripping fear that although everything seems ok at the moment, the likelihood that more problems are in your future, especially as you grow older, is likely to occur.  And don’t say that I’m living life with a glass half-empty.  I am optimistic that whatever arises, I’ll be able to handle and possibly even get control of by taking more supplements.  But my point is, is that it is likely that if you get one autoimmune disease, there may be more to follow.

My first autoimmune disease was a skin disease.  It’s located on my shins and called Necrobiosis Lipoidica.  At first I was told it was Granuloma Annulare and the doctor showed me a picture of a woman with it all over her body.  This conclusion of course, was horrifying to me because for the next five years, I worried I’d be covered with shiny, scaly scars.  Fortunately, the doctor was wrong and instead, I was diagnosed later with Necrobiosis Lipoidica, which is a skin disease that only affects the shins.  Both skin diseases usually accompany diabetes, so the doctor was confused why not only did I not have diabetes, but it did not run in my family.  Later, in my research of Rheumatoid Arthritis, I learned that Necrobiosis Lipoidica sometimes is associated with RA.  Around those same years that I developed this, I also got pleurisy, which is a painful inflammation of the lining between your lungs and your ribs.  Antibiotics seemed to clear it up and it was probably a result of living in such polluted air.  Pleurisy, however,  is a frequent symptom of Lupus and it sometimes accompanies RA.  Fast forward four years and I’m diagnosed with Hypothyroidism.  My gynecologist caught it, otherwise this would have probably gone on for years without me realizing.  Then seven years later I was diagnosed with RA.

The reality is, most people with an autoimmune disease like RA or Lupus, usually have many more autoimmune diseases.  It can be a ripple effect.  Whether it’s the diseases themselves, the lifestyles that accompany the diseases, or the medications, more and more seem to pile up.  I’m glad to be on alternative medications because I know I’m taking things that might just possibly reverse the disease process.  But there’s always that side of me, that terrified side, like a voice in the back of my head that says, “What’s next?”  This time at least, I know that I’m doing all that I can do.  I’m armed with knowledge.  I’m taking supplements that improve my health.  I’m eating better, sleeping more and consuming fewer toxins.  There’s nothing more that we can do besides enjoy every day for what it is, knowing life is uncertain, so whatever each day may bring, let it be the best that it can be.

Elizabeth Gilbert: Olé!!

I got this video from “Creative Chronic Babes” and found it appropriate for just about anyone. Elizabeth Gilbert is funny, soothing and inspiring. Although you may not end up ROFL, it’s still a must see if you enjoy a great speaker and want to feel inspired. Sit back and enjoy.

Lactoferrin, A Miracle Supplement

LactoferrinI have always been on the lookout for a natural supplement that can do what an antibiotic does. But wait, Lactoferrin does so much more. The amount of information out there on Lactoferrin is unbelievable, and I’m wondering why it’s taken until now for me to even hear about it. Read on and you will discover Lactoferrin is a supplement you should consider if you want to fight viruses, cancer, autoimmune diseases, and inflammation in general. And for those who are tired of taking supplements or popping any more pills, I have the answer for you too. Bioactive Whey is a great source for Lactoferrin. Scoop it up and serve it in your favorite drink. Your immune system will thank you later….

“It’s an effective anti-oxidant, anti-fungal, anti-bacterial, anti-viral, anti-inflammatory, anti-cancer agent and immune-boosting powerhouse. The FDA felt confident enough to approve its use as a spray on beef carcasses to kill E. coli 0157:H7, a particularly virulent disease-causing bacteria.”-Raw Milk Facts

Although further research needs to be made, Lactoferrin is believed to be helpful for the lungs whether they are inflammatory conditions such as Sarcoidosis, Cystic Fibroisis, or cancerous lungs. “Lactoferrin is a protein that is found naturally in milk, tears and saliva and can stop the growth of bacteria by preventing them forming ‘biofilms’ (when bacterial cells group together on a surface, such as the lining of the lung).”-European Medicine’s Agency

Lactoferrin (LF), also known as lactotransferrin (LTF), is a globular multifunctional protein with antimicrobial activity (bacteriocide, fungicide) and is part of the innate defense, mainly at mucoses……….The combination of iron and lactoferrin in mucosal secretions modulate the ability and aggregation of pathogenic bacteria, and inhibit both bacteria and viruses by binding to host cells/viral particles. This inhibits the ability of bacteria and viruses to attach to cell membranes. It is also an antifungal agent.”-Wikipedia

If you’re taking drugs like Enbrel, Orencia, Humira, Amevive, Epogen Remicade or Herceptin, these are inhibitors of tnf-protein. The problem with these drugs is they come with a wide range of side effects, including some rare, but very serious ones which can be even more serious than the condition that you’re taking them for. “Lactoferrin released at sites of inflammation interacts with mononuclear cells (16) and suppresses the production of inflammatory cytokines such as tumor necrosis factor alpha (TNF-alpha ) and interleukin-1 (IL-1) (6).”-Clinical and Vaccine Immunology

The possibilities of Lactoferrin seem endless.

Immunity:

“Lactoferrin is found throughout the human body and occurs in all secretions that bathe mucous membranes such as saliva, tears, bronchial and nasal secretions, hepatic bile, pancreatic fluids, and is an essential factor in the immune response. Lactoferrin is concentrated in oral cavities where it will come in direct contact with pathogens (i.e. viruses, bacteria, etc.) and kills or greatly suppresses these pathogens through a variety of different mechanisms. In fact, there are specific receptors for lactoferrin found on many key immune cells, such as lymphocytes, monocytes and macrophages, and is known to be directly involved in the upregulation of natural killer (NK) cell activity. “-Life Extension

Anti-Viral:

“Lactoferrin has been found to both directly and indirectly inhibit several viruses that cause disease in humans. It directly inhibits viruses by binding to viral receptor sites, thus preventing the virus from infecting healthy cells. For example, in vitro studies have found that lactoferrin strongly binds to the V3 loop of the gp120 receptor on HIV-1 and HIV-2, resulting in inhibition of virus-cell fusion and entry of the virus into cells.10 In addition, lactoferrin indirectly kills or inhibits viruses by augmenting the systemic immune response to a viral invasion. It’s interesting to note that there is a systemic deficiency of lactoferrin in people with HIV infection.”-LifeExtension

Anti-Cancer:

“Perhaps one of the most promising uses for lactoferrin may be in its potential as a nontoxic adjuvant cancer treatment agent. Extensive in-vitro (test tube) and in-vivo research with animals has shown lactoferrin to be a powerful anti-cancer agent.”-LifeExtension

Colon and Lung Carcinomas:

“Sekine et al. have demonstrated in vivo prevention by bovine LF (bLF) of aberrant crypt foci (ACF) and colon carcinomas in rats pretreated with azoxymethane and Bezault et al. found that injection of human lactoferrin (hLF) markedly inhibited tumor growth of solid tumors derived from v-ras transformed fibroblasts and a methl-cholanthrene-induced fibrosarcoma as well as lung colonization by the B16-F10 melanoma in an expermintal metastasis mode.”-Clinical & Experimental Metastasis

Anti-microbial:

“One study looked at lactoferrin as a “natural antibiotic” and found that lactoferrin both in-vitro and in-vivo strongly inhibited the toxic bacteria helicobacter pylori. They stated “It is concluded that bovine (cows) lactoferrin has significant antimicrobial activity against helicobacter species in-vitro and in-vivo.”(16) Another study using both in-vitro and in-vivo methods added lactoferrin to the drinking water of mice and subjected them to the toxic microbe staphylococcal. The study found that the mice getting the lactoferrin as 2% of calories reduced kidney infections by 40% to 60% and reduced bacterial counts 5- to 12-fold. They concluded “the results suggest a potential for the use of lactoferrin as natural anti-bacterial proteins for preventing bacterial infections.”(17)-LifeExtension

Antioxidant: “‘Several studies suggest lactoferrin reduces oxidative stress. Diseases such as cancer, heart diseases and AIDS are all closely related to oxidative stress either as a causative factor or as a factor in progression of the disease. One study that examined the role of whey proteins, multifermented whey proteins and lactoferrin in oxidative stress made the bold statement, “We can conclude that whey protein, lactoferrin and multifermented whey are good candidates as dietary inhibitors of oxidative stress and should be considered as potential medicinal foods in various pathologies as HIV infection and cancer.'(21) “-LifeExtension

Skin:

  • Repairs and purifies the skin
  • Reduces itching
  • Increases the skin’s defence mechanism
  • Reduces red and burning skin

Healthy Gums:

“A wide range of research institutions are focusing on and conducting research into lactoferrin. Through exhaustive gene expression analysis and administration studies, Lion was able to find out that lipopolysaccharide (LPS), a pathogen produced by periodontal bacteria, not only stimulates the progress of periodontal disease but also increases the level of cholesterol and triglycerides in the blood, a condition known as “dyslipidemia,” which is one form of metabolic syndrome*. “-LION

Anemia:

“It is relevant in the battle against anemia because it appears to improve iron absorption from food and helps transport this essential mineral to wherever it’s needed.”-HF

Candida and Ecoli:

“Lactoferrin possesses two known direct anti-microbial peptides called lactoferricin B and lactoferrampin. Researchers exposed cells of Candida albicans and E. coli to lactoferrin and then watched what happened under a high power laser-scanning microscope. The lactoferrin was taken up into the cell membranes of both organisms within a few minutes, and then proceeded to disrupt the integrity of their cell membranes, which either kills them directly or enables the immune system to fight an easier battle. The researchers observed that it was the lactoferrampin peptide that disturbed Candida, whereas the lactoferricin B disrupted E. coli. This indicates that lactoferrin uses multiple strategies depending on the type of problem.”-Wellness Resources

Arthritis:

“We have recently shown that resistin is a key mediator of arthritis accumulating in the inflamed joints and exerting its pro-inflammatory properties independently of TNFalpha. Here we evaluate neutrophils as a cellular source of resistin. Human neutrophils were subjected to subcellular fractionation where the presence of resistin was assessed using western blot, ELISA, and mass spectrometry. Presence of resistin on the neutrophil surface was visualized by flow cytometry. More than 95% of the neutrophils in circulation and in synovial fluid express resistin on their surface. Stimulation of mature neutrophils with fMLF induced release of resistin into supernatants and increased expression of resistin on the surface. Resistin is mobilized simultaneously with lactoferrin, a protein found in specific granules, and with granule-stored CR3/CD11b. Subcellular fractionation of human neutrophils demonstrated the presence of resistin in azurophilic and in specific granules. Here we show that neutrophils have two pools of resistin, the major one exists in specific granules, and the second on their cell membrane. Release of resistin from the neutrophil granules probably serves the main source of resistin at the site of inflammation.”-PubMed

Crohn’s, Colitis, Irritable Bowl Syndrome and other Intestinal Issues:

Perfect for a disease like Chron’s, “Lactoferrin also inhibits gut inflammation….”-Journal Of The American College of Nutrition

“The observation that lactoferrin can inhibit local inflammation by inhibition of TNF-{alpha} mediated immune responses predicts that lactoferrin exerts a similar antiinflammatory role at local sites of immune defense where the protein is expressed (e.g., the gastrointestinal tract, lung, uterus, etc).”-Journal Of The American College of Nutrition

WHEN DRUG THERAPIES AND ALTERNATIVE THERAPIES DON’T WORK

You just bought yet another supplement. Two weeks down the road, you haven’t noticed any changes. The supplement is expensive and you’re tired of keeping your hopes up. Is it worth continuing? After all, shouldn’t it have done something by now?

Vitamin E can take up to three months to work

When I was diagnosed with Rheumatoid Arthritis, one of the very first medications they give you is prednisone, a type of steroid, known as a corticosteroid. As with any steroid, this drug is very fast acting. Unfortunately, the drugs I tried after Prednisone took much, much longer to work. Methotrexate can take up to six months to work for some people, while for others it can work as early as one or two months. And then there are others who never experience any relief from Methotrexate after having been on it for many months.

So what do you really need to know when trying out a new drug, supplement or therapy? How do you know if you’ve given it enough time? Why is it that some people seem to do really well with supplements and claim they work, while others claim they don’t work at all? Why do some people have to try endless drug therapies before they finally reach the right one, while others might get relief right away?

Here are my thoughts on how to make any drug, supplement or therapy a success………

1. Research the drug, supplement or therapy.

Research, research and then research some more! It’s impossible to have a successful outcome from all drugs or therapies in terms of getting relief, but not wasting your time is success! I always have my favorite dependable sites like Mayoclinic for example that I depend on for information, but do be sure to also look at blogs, Wikipedia and ask people on support groups, as well as people you might personally know. It’s important to get a well rounded view on possible outcomes. Most people will be against experimentation. You’re not always going to get the kind of support you want, and that’s something to consider also. In the end remember, it’s your body and your decision, period.

2. Have realistic expectations.

If you have a chronic disease, the odds are against you, that you will find a drug or supplement that puts you in remission. Many people do go into remission, but many more don’t. There are different types of remission as well. Most people who achieve remission, achieve “drug induced remission” meaning that if they went off the drugs, their symptoms would come back full force. There is the rare person who achieves remission and can go off drugs without the return of symptoms. There are also different degrees of drug induced remission. You can be considered in remission and yet still have some symptoms of the disease. Most auto-immune diseases require “stacking” medication before symptoms of the disease are relieved. Keep that in mind when taking supplements. Although there are many supplements that can do amazing things, you will mot likely still have some symptoms of your disease if you are on only one supplement. Drugs and supplements both take time to work. Research how long it usually takes for something to work and consider adding on an extra month just in case your body takes longer than most. Remember that this is somewhat of a gamble. Even your doctor doesn’t know what drug will best suit you or how long it will take.

3. Understand “Hering’s Law”.

Natural Healing is based on “hering’s law” which in a nutshell means that people often re-visit previous symptoms temporarily. This is often when people quit their new supplement or medication, while re-visiting symptoms is often an indicator that you’re on the right track! Having side effects from a drug or supplement doesn’t have to be a bad thing. Any kind of detox will give you side effects simply because the toxins have to re-enter your blood stream and exit your body. This can cause lots of symptoms. Antibiotic therapy is also another therapy that people often stop because they suddenly get side effects. If people could just realize that this is often a sign that you’ve found the right medication for you, they could stay on the right track and reap the benefits right around the corner! On the flip side, side effects that are not normally a disease symptom, like vomiting or blurry vision, depending on your disease, could be a sign that the drug you’re taking is not the right drug for you. For people on drugs like methotrexate, side effects often become less severe over time, but this is not considered “Hering’s Law.” “Hering’s Law” is the re-visitation of old symptoms from the disease itself, not new side effects from the drug. If you are having severe side effects like vomiting or blurry vision and these are not normal symptoms of your disease, then you should consider talking with your doctor and possibly coming off of the drug.

Some pharmaceutical drugs don’t cause you to re-visit symptoms because they suppress the immune system. Suppressing the immune system, vs. emptying the body of toxins are two entirely different things. It’s important to realize that side effects are simply part of the healing process when it comes to a lot of supplements, alternative therapies and select drugs.

5. Don’t group all supplements or alternative medications into one lump sum.

Look at each one individually and it’s specific mechanics.  It’s absolutely essential to understand how a supplement, drug or therapy works so that you’re not hindering the process. Some supplements or drugs require a special diet or other supplements in order for them to work. N-Acetyl Cysteine is one of them. It rids your body of toxic metals. But it’s important to take this supplement with extra Vitamin C among other things in order for it to work. Along with that, you have to supplement the metals that are important to your body, like zinc, iron and selenium because N-Acetyl Cysteine doesn’t have the capabilities of only selecting specific metals.

6. Try to take into account how complicated the body is, how much it changes from person to person and how if something doesn’t work for one person, it doesn’t necessarily mean it won’t work for you.

We eat different foods, have different lifestyles, have different personalities. OF COURSE we’re all going to react differently to medications, no matter what they are. That’s just part of being human. Even a supplement like Vitamin E, for instance, can take up to three months before you might notice a difference. So hang in there and give it plenty of time!

7. Natural healing needs the effort of the person to consider what they’re ingesting, whether it’s the wrong foods or medications that are inhibiting the supplement from working.

Minocycline therapy for instance, can be easily impared. “Minocycline’s absorption is impaired if taken at the same time of day as calcium or iron supplements. Unlike some of the other tetracycline group antibiotics, it can be taken with calcium-rich foods such as milk, although this does reduce the absorption slightly.[6]“-Wikipedia

Make sure you read about a drug or supplement carefully before taking it, unless you’re willing to throw all caution to the wind. I know for myself, sometimes I get both lazy and daring. Sometimes that works out and sometimes it backfires.

In my support group, a woman with Crohn’s told everyone to avoid aloe vera juice because it had caused her intestines to swell and cause blockage. In fact because of her aloe vera juice experience, she cautions everyone to avoid alternative treatments completely. To this day, I feel like I’m missing quite a bit of information so I can understand the full story. Where did she buy her aloe vera juice, for example? And was it pure aloe vera juice or were there other ingredients? As well, was it possible that she was experiencing “Hering’s Law” and just drank the aloe in too much of a fury? I will never know. Some Aloe Vera Juice products contain lots of sugar and sugar is highly inflammatory. It’s very possible that that could have been the culprit.

In the end, research everything and listen to your body. Do what you feel is right. You have to live in your own skin. You are the only person that knows you the way that you do. And don’t forget to share your successes with the rest of us!

Tired? Anemia might be the blame.

Anemia

Anemia

Unfortunately, if you have an autoimmune disease, it’s likely that you also have Anemia which can make you feel extremely tired, one of many symptoms.  In case you’re not familiar, Anemia is a blood disorder where oxygen is inefficiently carried to lungs, tissues and other organs.  The process starts with our bone marrow.

“Conditions such as infections, inflammation, and cancer particularly suppress production of red blood cells in the bone marrow.”-Merck Manuals

“Anemia is the most common extra-articular manifestation of rheumatoid arthritis (RA), estimated to occur in 30-60% of patents.  Two primary types of anemia, iron deficiency anemia and anemia of chronic diseases (ACD) are seen in RA patients.  The retrospective study of 225 patients with RA showed that 64% of patients were anemic, and 77% were found to have ACD and 23% to have iron deficiency anemia.

ACD is an inflammatory anemia and inflammatory cytokines such as IL-6 and TNFa are thought to play important roles in anemia in RA.  However, it is still unclear how anemia is induced and which cytokine is most important.”-Springer-Verlag 2008

If your anemia is from inflammatory cytokines, your best bet is to get your disease under control and talk with your doctor about other options including B-12 injections.

“Erythropoiesis is often suppressed in chronic inflammatory diseases due to expression of hepcidin, a regulatory hormone that limits the availability of iron for erythropoiesis even when dietary iron intake is sufficient.” –FibroGen

Taking B-12 and iron supplements can be helpful for some people.

“Low hemoglobin may be a temporary problem remedied by eating more iron-rich foods or taking a multivitamin containing iron.”-MayoClinic

And I know personally, that taking B-complex vitamins along with iron does help with my energy level.

In addition to iron, your body needs folate and vitamin B-12 to produce sufficient numbers of healthy red blood cells. A diet lacking in these and other key nutrients can cause decreased red blood cell production. Additionally, some people are unable to effectively absorb B-12.”-MayoClinic

Another worry is pregnancy.

“If you’re pregnant, you’re at an increased risk of iron deficiency anemia because your iron stores have to serve your increased blood volume as well as be a source of hemoglobin for your growing fetus.”-MayoClinic

Even more worrisome than your anemia during pregnancy is how it will affect the unborn child.  According to Health&Wealth, “Anemia during pregnancy can cause growth retardation of fetus.”

So what are your options?

1.  Get your disease under control (easier said than done of course)

2.  Avoid alcohol

3.  Avoid antibiotics if your anemia is severe, “Certain medications, such as some antibiotics used to treat infections, also can break down red blood cells.”-MayoClinic

4.  Get blood-work done before conceiving so you can take necessary precautions.

5.  If you do have anemia, find out what kind you have.

Sometimes there’s not much you can do.  Even chemotherapy drugs can contribute to anemia.

Sick Days, No thanks!!

Vomiting is one of the many side effects of Methotrexate

Vomiting is one of the many side effects of Methotrexate

Being part of a support group, I check daily posts written by fellow RA sufferers. In a recent post called “MTX questions” a person asked what others do in regards to taking their MTX, (Methotrexate). Do they take it Friday and feel sick on Saturday or do they take it Sunday and feel horrible for Monday? This is a common question and it gets addressed often. For those of you that don’t know, Methotrexate is a chemotherapy drug, also known as a DMARD and it works by suppressing the immune system. For those of us with an autoimmune disease, the common thought is that an autoimmune disease means an overactive immune system. I have found information that states autoimmune diseases are simply the body confusing healthy tissue for non-healthy tissue, meaning it’s not a system that’s overactive as so much it is an immune system that isn’t working correctly. Suppressing the immune system does not make it work correctly. Instead, it keeps the body from destroying itself, kind of. Methotrexate may cause damage to the liver, intestines and sometimes the lungs, just to name a few. Although it doesn’t seem like methotrexate is a good option, doctors don’t present many other options when you get diagnosed with RA. And you can’t go on living with uncontrollable inflammation. Inflammation in itself, if left uncontrolled can cause cancer, intestinal damage, organ damage, other diseases and with RA will most likely cause joint erosion and deformation. So although taking a toxic drug like methotrexate seems out of the question, not taking it is just as scary.

It’s no wonder I kept searching for alternative options. I was tired of dreading my weekends. On Monday and Tuesday I still felt like I was a little bit “sick” from the methotrexate. If you haven’t taken this drug and it hits you hard like it did with me, this is what I experienced: The next morning after taking methotrexate I would feel more swollen, more painful and more stiff. My kidney area always felt like it had been kicked in the night and this would last until later in the evening. I would feel extremely fatigued and as if I had slept on rocks. Imagine you haven’t slept in 2 days. That’s how fatigued I felt. Or imagine what the flue feels like. That’s exactly how it was, resting both Saturday and Sunday so I could prepare for the following work week. Even running a low grade temperature wasn’t out of the question, of course this could have just been my RA at work. My hair would always fall out in mass amounts on Saturday and it would lessen as time went by. My eyes would be somewhat bloodshot and I would generally feel less hungry than normal for a few days. I wouldn’t exercise over the weekends. Instead, I would try and “recover” until the week started again and try to summon up energy to get myself to the gym after a few days of shaking off the methotrexate side effects. Heck, I was one of the lucky ones that didn’t throw up after taking methotrexate, a common side effect. As time went on having Rheumatoid Arthritis, I found myself becoming weaker and weaker. Workouts were less effective. My resistance level became less and less on the eliptical machine. I no longer did weights because the swelling of my wrists and fingers made it impossible. I continued to at least work hard at strengthening my knee joints. I figured that was the most important-being able to walk, so I made it my top priority.

When I finally freed myself of the methotrexate hangover, I felt like I was on the right path. And speaking of hangover, being on methotrexate meant you couldn’t drink a drop of alcohol because the drug itself does a # all on it’s own to your liver. Being off the drug meant I could drink again. Though I know alcohol is a poison, I tested my theory out on my own liver….just how bad can it be compared to methotexate? I was getting monthly blood tests because doctors have to keep track of how your liver is functioning and I would closely monitor my tests. At one point in time, just 10mg of methotrexate (a very small dose) elevated my liver enzymes. Yet when I went off this drug, one weekend I purged on alcohol. I came in for my test and didn’t tell them I was off of methotrexate. When the results came in, my liver was functioning better than it ever had while I was on methotrexate. Go figure!!

So truly, the reality is methotrexate is hard on your body. For those of you that take it, I feel for you. If your side effects are bad, giving up your weekends to a drug is a horrible thing to experience. I wish you all the best of luck in your journey with an autoimmune disease, or if you know someone who has an autoimmune disease please be compassionate as I’m sure they could use the support.

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