Can You Trust Your Doctor?

In my case, I don’t think so, but I’m hoping in your case that you CAN trust your doctor.

For those of you that have been following my blog posts, I have been out of insurance (but now have it) for the past three years.  Losing my insurance, because my husband lost his teaching job and we could not afford Cobra, was a blessing to a certain extent because it forced me to try alternative methods, and I found some excellent ones, including my two favorite, Low Dose Naltrexone and Serracor-NK.  Raising my Vitamin D levels and B12 have also been some excellent choices of mine along with other great choices like fish oil, etc., all improving my quality of life.  RA is very hard to control.  Just talk to anyone who’s on the conventional meds and you will find that many still haven’t found the right cocktail, and most are still experiencing joint damage despite taking DMARD’s.   I’m certainly not against drugs, but I will say that taking alternatives has opened my eyes to the possibility of healing my body rather than just suppressing the disease.  So now that I have insurance, it means for me, going back to the doctor, not to see what my choices are, but to get blood work done, x-rays and let the doctor know what choices I’m in favor of.

I hadn’t seen my favorite nurse in several years.  She gave me a giant hug.  “Wow, you look great!” she said.  She asked me what I was taking for my RA.  I told her supplements, but that I wasn’t on any drugs except for the occasional prednisone.  She said, “Wow, it’s really working, you look fantastic!”

Unfortunately, my Rheumatologist experience was definitely a poor one.  Before this Rheumatologist, I had researched and found a much older gentleman who became my Rheumatologist for approx one year.  He was open-minded, not against antibiotic therapy, not against supplements or icing my arm which proved to be the most beneficial in reducing the inflammation in my left forearm in particular, and he had enough experience and knowledge that I felt I had found a good doctor.  When I saw him for the first time, he ordered one x-ray of one hand.

After one year however, he retired.  He told me he found an excellent replacement, a young woman graduating from UCLA.  I was disappointed that I would no longer have my old doctor, but I was open to having a new doctor, especially a woman.  When I met her, she seemed nice enough.  She was young and beautiful and very friendly.  She sent me to x-rays and for blood work.  When the radiologist told me I had 30 x-rays to get done, I thought, “Really?”  At that time, I was not as forthright with my care.  I didn’t put my foot down and say, “that’s way too many.”  Instead, I let the x-rays happen, including one to my throat (which I have hypothyroidism and that’s never a good idea) and including one to my pelvis, (I am of child-bearing age and that’s never a good idea either).  And then I lost my insurance and I got a bill of $700 for all my x-rays.  I fought the bill for over 6 months, and eventually the insurance took care of it.  I was unhappy with the doctor because you should never expose yourself to that much radiation.  X-rays are cumulative, and even though there’s no clear evidence of how much is too much, I’m on a healing path, not a path of increasing the toxins in my body.   And having had a doctor, a great doctor, who only ordered one x-ray, and one later on to compare, I knew that 30 x-rays were approximately 29 too many.

What I find interesting, is that when you look for information on the internet, it’s always, “Well you’re exposed to radiation all the time from natural sources.”  But what makes this ok?  Why would you then want to increase your exposure?  Two wrongs don’t make a right, right?  It’s easy for doctor’s to poo poo the fear of two many x-rays, while billing your insurance, putting money in their pocket, but let me just say this, a close relative of mine who is a radiologist, was quite upset to hear that I was exposed to 30 x-rays before and thought my doctor was a quack and just trying to pay off her college loans.  He chooses not to get x-rays whenever they aren’t absolutely necessary.

I hadn’t seen my new Rheumatologist in almost 3 years and I was convinced that she had probably learned a thing or two since I had last seen her.  Or maybe she would at least know not to give ME so many x-rays.  I was open to the possibility that I just needed to give her a second chance.  Maybe before, she just didn’t know.  She was surprised how flexible I was and how little inflammation and deformity I appeared to have.  So there you have it, my supplement regimentation is working to a certain extent.

At the end of the apt., she asked if I was open to getting my hand x-rayed.  “Sure”, I said, “but please I don’t want any x-rays of my thyroid or ovaries because that can be very harmful.”  She didn’t say anything, so I wondered if she knew what I was referring to and sent me down for blood work and x-rays.

When I saw the technician, he said, “Ok, 18 x-rays today.”  I said, “What?  How can that be?”  And he explained that there were several of each hand, several of each feet, etc.  At first I thought, “well ok, it’s just the hands and feet.”  But thinking back to how many my previous Rheumatologist exposed me to, (totaling two) and considering just 3 years ago, this doctor had exposed me to 30, I told the technician I’d pass.

I walked back to my Rheumatologist office and handed the paper ordering the x-rays to the nurse and said, “Tell her this is simply too many” and left.

I just figured it was time for me to find a new Rheumatologist.  And so my quest begins….

Coming Soon: Supplement Recommendations Condition-Specific

Hello everyone!

Just a reminder that I am not a doctor and please read my Disclaimer on this site.  (just click on the link).  I have started working on pages that I will be putting up soon on condition-specific supplement recommendations.  If you have a disease that you’d like me to put up there specifically, please comment to this post and recommend it!  So far, these are the conditions I have in mind to talk about:

Lupus

Multiple Sclerosis

Psoriasis

Psoratic Arthritis

Pulmonary Fibrosis

Rheumatoid Arthritis

Osteoarthritis

Parkinson’s

Crohn’s

ALS   also known as Leu Gehrig’s Disease

Autism

Thank you for your help and I hope to have this ready for you soon!

Sincerely,

-Sarah Keturah

The Curse of Fibrin

clotting

If Fibrin didn’t exist, we would bleed to death, literally. But when Fibrin goes awry, it can lead to a host of diseases including Rheumatoid Arthritis, Cystic Fibrosis, Pulmonary Fibrosis, Fibrocystic Breasts, Endometriosis, Fibroids, Thrombosis, Cardiovascular Disease, Liver Cirrhosis, Heart Disease and a host of many other diseases involving inflammation.

When Fibrin works as it should:

“Fibrin (also called Factor Ia) is a fibrous protein involved in the clotting of blood, and is non globular. It is a fibrillar protein that is polymerised to form a “mesh” that forms a hemostatic plug or clot (in conjunction with platelets) over a wound site.”-Wikipedia

When Fibrin is the bad guy:

Rheumatoid Arthritis:

“Recent research has shown that fibrin plays a key role in the inflammatory response and development of rheumatoid arthritis.”-Wikipedia

Scar Tissue:

Not all scar tissue is considered bad necessarily, but when it’s in your organs, it can lead to terrible problems.  And when it’s in your brain, it can lead to Multiple Sclerosis.

The below paragraph says that there are “no direct treatments for elevated levels”, meaning fibrin levels, yet anyone taking serrapeptase or studying alternative medications and diseases and knows about enzymatic therapy knows that you can reduce fibrin levels with certain supplements and can effectively reduce your CRP.  So why are so many doctors in the dark about this?

“Sometimes fibrinogen (the test) is ordered, along with other cardiac risk markers such as C-reactive protein (CRP), to help determine a patient’s overall risk of developing cardiovascular disease. This use of fibrinogen has not gained widespread acceptance though, because there are no direct treatments for elevated levels. However, many doctors feel that fibrinogen measurements give them additional information that may lead them to be more aggressive in treating those risk factors that they can influence (such as cholesterol and HDL).”-www.labtestsonline.org

“Fibrinogen is an acute phase reactant, meaning that fibrinogen concentrations may rise sharply in any condition that causes inflammation or tissue damage. Elevated concentrations of fibrinogen are not specific — they do not tell the doctor the cause or location of the disturbance. Usually these elevations in the fibrinogen blood level are temporary, returning to normal after the underlying condition has been resolved. Elevated levels may be seen with:

While fibrinogen levels are elevated, a person’s risk of developing a blood clot may be increased and, over time, they could contribute to an increased risk for developing cardiovascular disease.” –www.labtestsonline.org

If elevated fibrinogen levels are involved in inflammatory disorders, then here is a longer list of inflammatory disorders that would greatly improve with the direct decrease of fibrinogen:

“Abnormalities associated with inflammation comprise a large, officially unrelated group of disorders which underlie a vast variety of human diseases. The immune system is often involved with inflammatory disorders, demonstrated in both allergic reactions and some myopathies, with many immune system disorders resulting in abnormal inflammation. Non-immune diseases with etiological origins in inflammatory processes are thought to include cancer, atherosclerosis, and ischaemic heart disease.[4]

A large variety of proteins are involved in inflammation, and any one of them is open to a genetic mutation which impairs or otherwise dysregulates the normal function and expression of that protein.

Examples of disorders associated with inflammation include:

Allergies

An allergic reaction, formally known as type 1 hypersensitivity, is the result of an inappropriate immune response triggering inflammation. A common example is hay fever, which is caused by a hypersensitive response by skin mast cells to allergens. Pre-sensitised mast cells respond by degranulating, releasing vasoactive chemicals such as histamine. These chemicals propagate an excessive inflammatory response characterised by blood vessel dilation, production of pro-inflammatory molecules, cytokine release, and recruitment of leukocytes.[4] Severe inflammatory response may mature into a systemic response known as anaphylaxis.

Other hypersensitivity reactions (type 2 and type 3) are mediated by antibody reactions and induce inflammation by attracting leukocytes which damage surrounding tissue.[4]

Myopathies

Inflammatory myopathies are caused by the immune system inappropriately attacking components of muscle, leading to signs of muscle inflammation. They may occur in conjunction with other immune disorders, such as systemic sclerosis, and include dermatomyositis, polymyositis, and inclusion body myositis.[4]

Leukocyte defects

Due to the central role of leukocytes in the development and propagation of inflammation, defects in leukocyte function often result in a decreased capacity for inflammatory defense with subsequent vulnerability to infection.[4] Dysfunctional leukocytes may be unable to correctly bind to blood vessels due to surface receptor mutations, digest bacteria (Chediak-Higashi syndrome), or produce microbicides (chronic granulomatous disease). Additionally, diseases affecting the bone marrow may result in abnormal or few leukocytes.

Pharmacological

Certain drugs or exogenic chemical compounds are known to affect inflammation. Vitamin A deficiency causes an increase in inflammatory responses,[8] and anti-inflammatory drugs work specifically by inhibiting normal inflammatory components.

Cancer

Inflammation orchestrates the microenvironment around tumours, contributing to proliferation, survival and migration. Cancer cells use selectins, chemokines and their receptors for invasion, migration and metastasis.[9] On the other hand, many cells of the immune system contribute to cancer immunology, suppressing cancer.”-wikipedia

If you’re not convinced by wikipedia that too much fibrin is bad news, plenty of other good sources for information are out there, including pubmed.  Just do a quick google search on fibrin.

Hodgkin’s Disease: “Fibrin deposits were observed in the involved lymph nodes and/or spleens of 15 patients with Hodgkin’s disease by specific immunofluorescence and by electron microscopy. Two basic patterns of fibrin deposition were observed: 1) intercellular deposits, chiefly associated with nonneoplastic-appearing lymphoid cells and 2) deposits associated with the collagen fibers of young connective tissue. In addition, coarse fibrin deposits were observed in areas of necrosis, presumably a non-specific finding. Fibronectin was also observed in intercellular areas, but staining was less intense than for fibrin. Fibrin deposits were also observed in 3 of 6 cases of non-Hodgkin’s lymphoma, indicating that the finding is not an exclusive feature of Hodgkin’s disease. The pathogenesis and possible significance of fibrin deposition in Hodgkin’s disease are related to earlier observations of activation of the coagulation system on neoplasia and cell-mediated immunity and to the possible role of fibrin, fibronectin, and their breakdown products in angiogenesis and fibroplasia.”-pubmed

Multiple Sclerosis: “Tissue plasminogen activator (tPA), a neuronal as well as the key fibrinolytic enzyme, is found concentrated on demyelinated axons in multiple sclerosis lesions together with fibrin(ogen) deposits. The decreased tPA activity in normal-appearing white and grey matter and lesions of multiple sclerosis is reflected in diminished fibrinolysis as measured by a clot lysis assay. Nonetheless, peptide products of fibrin, including D-dimer, accumulate on demyelinated axons-the result of fibrinogen entry through a compromised blood-brain barrier (BBB). Analysis of tissue samples on reducing and non-reducing polyacrylamide gels demonstrates complexes of tPA with plasminogen activator inhibitor-1 (PAI-1) but not with neuroserpin, a tPA-specific inhibitor concentrated in grey matter. As total tPA protein remains unchanged in acute lesions and the concentration of PAI-1 rises several fold, complex formation is a probable cause of the impaired fibrinolysis. Although the tPA-plasmin cascade promotes neurodegeneration in excitotoxin-induced neuronal death, in inflammatory conditions with BBB disruption it has been demonstrated to have a protective role in removing fibrin, which exacerbates axonal injury. The impaired fibrinolytic capacity resulting from increased PAI-1 synthesis and complex formation with tPA, which is detectable prior to lesion formation, therefore has the potential to contribute to axonal damage in multiple sclerosis.”-pubmed

Since most of us are never ordered a fibrinogen test from the doctor, then my best assumption is that any tests that show an elevation of inflammation, would therefore mean that there is too much fibrin in the blood.  As you can see, too much fibrin results in inflammation and can lead to disease.  The only therapies that I know of that reduce fibrin are enzymatic therapies, which is why I take serrapeptase.   I prefer brands that are enterically coated.  Feel free to share your fibrin story.

Alternative Options for Multiple Sclerosis

Having an autoimmune disease, or in my case, a few, has increased my interest in learning about other diseases, as well as other treatments.  Of course, I think I have always had an interest in medical literature.
And since I’m on an alternative path of treatments, my interest definitely sways into the natural and homeopathic, even though I am certainly not against conventional medications.   I have no idea where this interest came from, but it has always been there, along with many other interests in my life.  And Mom, please stop telling me I should have been a doctor…I’m an artist, first and foremost!  I didn’t become interested in learning about multiple sclerosis until I had Rheumatoid Arthritis.  Before this, my uncle developed Lou Gehrig’s Disease (ALS), and later, after I developed RA, my father developed Parkinson’s.  Though my uncle is not related by blood, this still added to my growing interest of wanting to put a halt to all the disease in my life.  Perhaps if I could learn about these diseases, I could also come up with theories on how to improve the lives of those that had them?  And why did it seem like diseases were on an upswing?  My quest for answers continues, so I hope you can share in my journey to help the lives of others.

I was on Daily Strength one day when someone with both Rheumatoid Arthritis and Multiple Sclerosis wrote in on one of the posts.  They mentioned how Low Dose Naltrexone had changed their life.  At the time, I didn’t pay much attention to it and later couldn’t find the member.  But months later I had remembered Low Dose Naltrexone and started researching.

Upon research I found communities who knew a lot about Low Dose Naltrexone, and also people who knew how to be terrific supporters.  I gained friends, many who had MS and as a result became more interested in learning about Multiple Sclerosis.  I also hoped to simply learn more about neurological diseases.  My dad, new to Parkinson’s wasn’t as keen as I was in alternative medications at first, but soon I coaxed him into trying LDN.  I don’t think he thought it was doing much until months later when he ran out and realized he noticed a substantial difference.  I also have him taking higher doses of Coenzyme Q10 which has been shown to slow down the progression of both PD and ALS.

Multiple Sclerosis has been particularly interesting to me because the treatments for MS are currently inadequate.  Ask anyone with MS and you’ll hear the same thing.  That’s part of the reason why so many people with MS discovered Low Dose Naltrexone.  You can say the same for Pulmonary Fibrosis and many other diseases where people are given steroids, antibiotics, and other medications hoping to change the course of the disease and yet the disease for the most part, continues to progress without much change.  Pulmonary Fibrosis is a disease that can also be treated with Serracor-NK and Serra-RX because it reduces scar tissue.  Scar tissue can cause many health problems and diseases which is why reducing this scar tissue and fibrin which causes it, using Serrapeptase can be so helpful.

  What is MS?  Watch this video to learn more.

Recently, I’ve been thrilled to see that Serracor-NK is a recommended alternative treatment for Multiple Sclerosis.  It’s also compatible with most drugs, so another great solution if you have MS and are on CRAB drugs, antibiotics, or steroids.  Because I take Serracor-NK and know how well it works for me, I imagine that it would also work well for MS.  There are lots of theories out there that MS and RA are actualy closely related.  Whatever the case, any treatment that works for MS is a miracle.

   Watch an MS relapse to better understand this disease.

In MS, the myelin protective sheath that covers the nerve cells is broken down by immune complexes that are embedded in it. Serracor-NK,Serrra RX80 and other proteolytic enzymes break down the destructive immune complexes and can dramatically reduce MS symptoms. While regeneration of damaged tissue is not possible, regular supplementation with enzymes has been documented to halt the progress of degeneration associated with most stages of MS.”-biomediclabs.

  Reversing MS, is it possible?  Research shows new hope!

Hopefully soon we will find real solutions for our medical issues.  Until that day comes, I hope that you will join in the research, theories and recommendations that myself and many other people provide.  I will always mention, I am no doctor and this is all solely my opinion, but I do hope that this site helps you!  Hugs and thanks, -Sarah

Saying Goodbye to Acupuncture for Now

I don’t want t o give it up acupuncture. I do notice a slight difference and enjoy the attention. But since every Saturday I was having to get up a little earlier than I would naturally and since every week it was costing me $20 and I am currently more broke than ever, I simply can’t afford to keep going. I was noticing the biggest difference in my left wrist. And although I think it’s probably worth the money and time, I’m just so concerned with money right now that I can’t rationalize doing something that’s only making a slight difference. Maybe I’ll go back in the future but so far, unless money is no object, the benefits are not extraordinary enough. Supplements are so costly and I spend a TON on them. So that’s where I’m at. I do feel sad about it because I know it was helping a little. It was definitely improving my life, but I would only recommend acupuncture to people with RA who are near remission. Otherwise, it will probably just make your symptoms worse. I always flared during the visit. But the after effect of less inflammation was worth the flare. In the past however, when I wasn’t on alternative meds and tried acupuncture, I had a terrible flare that lasted weeks. It was awful! So again, I would only recommend acupuncture to those who are doing well with their disease and trying to ease smaller symptoms but not to people who are in the middle of a healing crisis, or worse, still looking for the right cocktail altogether.

Health before Wealth

Recently I was talking to my mom about the newest thing I’m thinking of trying. It’s suppose to balance the pH of your water, along with add electrolytes and minerals. (see link) She asked, “How can you afford to take all of these things?”

The truth is, financially I can’t really. I’m stretched as thin as a rubber band, ready to break at any moment. These are hard, economical times.

On the flipside, can I afford to NOT keep trying new therapies in hope that remission will soon be giving me a high five at my doorstep? Sure I’m feeling great in a sense that I’m completely functional with RA. But as long as I’m not in remission, there’s still damage being done. I’m thinking long term. It’s the same as keeping up on your teeth cleaning. If you don’t, you could end up with some serious tooth decay, along with heart conditions and toxins invading your body. What kind of damage is happening to my hands long term? And there’s no guarantee with conventional drugs either that you can skip out on the deformities. Just clue into a recent post and you’ll see that hand deformity is just like the disease itself in that it varies from person to person. So you have to do your best to get inflammation under control no matter what you’re taking. Even if you’re taking DMARD’s and Biologics, you have to consider that eating right and exercising would be a wise, helpful choice since these medications can raise cancer risks, among other things. Our bodies are long term investments.

From time to time expense comes up as a topic in my RA support group. The idea of going organic, buying fresh food vs packaged, and taking supplements that can improve overall health seems too expensive to some. Most people embrace the burden of the extra costs, but a few need encouragement that long term, investing in the right foods and supplements will save money. This is particularly tough when a lot of us, including myself are living paycheck to paycheck. What you pay now at the grocery mart will help determine the costs of your future medical bills. Just like I am spending money on supplements, rather than movies or haircuts, I’m figuring that the money I spend now could make for a less expensive health bill in the future. Not only that, but the better I feel and the more that I can do, the better chance I have at making more money in the future, simply because I’ll be able to keep up a career and hopefully advance in that career.

So my motto is, when you’re trying to decide what to eat for lunch and your choice is a hamburger on the doller menu or that organic salad with grilled, free range chicken that were raised without antibiotics….. choose the latter. Because in my opinion, you’re going to be paying for your health in one way or another.

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.

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