If I were to dress up as a doctor for Halloween, perhaps I’d be Greer and add wings on my back. Greer is an absolute angel. He doesn’t just serve people with insurance, but he also takes in people who have nothing to offer him. His services awarded him a “2009 Presidential Medal of Freedom, for his 25 years of dedication, at a White House ceremony with President Obama.”
I wish a person like Greer didn’t surprise me that he even exists. I mean, who heard of such a thing, a doctor who got into the business for the right reasons? I’m shocked!!
I’d rather not be shocked. I’d rather be shocked when people don’t help others. I’d rather be shocked that a crime was committed on the street and there was one person who didn’t try and help.
It is comforting though that someone like Greer is out there, and that he is teaching. Maybe just maybe the world CAN become a better place and that health care for all is right around the corner. :)
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.
I 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. BioactiveWhey 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 astumor necrosis factor alpha (TNF-) 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:
“The observation that lactoferrin can inhibit local inflammationby inhibition of TNF- mediated immune responses predicts thatlactoferrin exerts a similar antiinflammatory role at localsites of immune defense where the protein is expressed (e.g.,the gastrointestinal tract, lung, uterus, etc).”-Journal Of The American College of Nutrition
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?
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. This means that if one product doesn’t work for them, they often give up on all products even though they are all so vastly different. Again, research is key. 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.
Again, research is key. When I finally took the leap and tried alternative therapies, the first thing I tried was Low Dose Naltexone. There was a growing buzz on the internet and in my support group that LDN was working for people with autoimmune diseases, particularly Multiple Sclerosis and Crohn’s. I convinced two other people on my support group to try LDN too. We couldn’t find anyone on the internet who had RA and was trying LDN and the only information we could find about it was on the LDN website. We had no idea how long it would take to work, or how well it could work. All we had were each other, and that was at least, something. We also learned that the drugs we were on, immune suppressers weren’t compatible with LDN, according to the LDN website, so we needed to get off of them in order for LDN to work.
One of the women, we’ll call her Susy, started feeling a difference with LDN right away, while the another woman, we’ll call her Jennifer and I were waiting patiently for something to happen. At around two months, I noticed I could finally sleep on my sides again, something I hadn’t been able to do in over a year. It was a miracle. But Jennifer still hadn’t had any positive results with LDN. She had stopped taking Enbrel, and I had stopped taking methotrexate. So we were really dependent on LDN working. As time went on, she tightened up her diet and went through horrible flares. She almost gave up. Enbrel hadn’t worked for her, so she continued to hope that LDN would do something. After six months on LDN she started to finally reap the benefits. But why did it take so long? And why at the four month mark, did both of us start to experience more frequent flares? She eventually decided to try minocycline therapy while still taking LDN. We agreed that LDN was working for us, but we also felt that because we still had inflammation, we needed something more to get things under control. Four months later of Minocycline and LDN, and Jennifer is in remission. She no longer takes LDN or Minnocycline. She is a perfect example that some things are worth the wait.
I never took minocycline therapy and I have various reasons why. Instead I decided to try Serracor-NK, which was a recommendation from a neighbor. At first I was skeptical because so many other supplements I had tried didn’t work. Still, I was impressed with the case studies online and one in particular with an older woman with RA who took Serracor-NK. But after one month and no changes, not even any noticeable side effects and I started to wonder if my money was going down the drain. Knowing the supplement did not decrease the woman from the case studies’ ESR rate until the second month, I vowed to hang in there, determined that if I didn’t at least stick it out that long, I would always wonder if it could have worked. To my grateful surprise, at two months I did feel a difference, and at four months, I felt a tremendous difference. In fact, each day gets better and better!
In the end, listen to your body and 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!
We know her as a sexual siren who inspired us by her beauty, intellect and charm from “Romancing the Stone”. And she scared the wits out of us in “War of the Roses”. For those not following her career, she pretty much dropped out of the lime light for a lengthy period of time. What happened?
She was diagnosed with Rheumatoid Arthritis!!
Here’s a little snip it of life for Kathleen during that time:
In my mid-40s, I reached the jolting realization – after decades of assuming I was fertile – that I couldn’t get pregnant again. We went to see infertility specialists to ask about in-vitro fertilisation, but they told me my eggs were probably no longer viable.
Next, we considered using a younger woman’s eggs and Jay’s sperm. However, we would probably have had to use a surrogate mother – and that made me feel incredibly left out. In the end, the obstacles seemed insurmountable, but that didn’t make the fact that I couldn’t have another child any less devastating. For a time, I felt as if I wasn’t a woman any more.
While all this was going on, I had also discovered I was suffering from a severe form of rheumatoid arthritis, which was a complete and total nightmare.
I’d always felt I could do almost anything that required physical strength and skill. I took pride in doing my own stunts. And suddenly all of this was stripped away and my body could respond only with excruciating pain whenever I tried to move it.
My joints swelled up so badly that I could hardly walk. Some days I was in so much agony I couldn’t even climb out of bed. Jay was very, very supportive. He must have been terribly fed up with my problems, though. The greatest shock to me was how I lost belief in my own attractiveness, my own desirability, everything.
With my loss of confidence went a loss of sexuality. That’s a strain on a marriage, a strain that is multilayered.
My condition made sex difficult because, physically, everything hurt so badly that it was so hard to feel sexy, hard for me to be a good partner, hard to be intimate. There was no position that didn’t hurt like hell.
When my pain from the illness was at its worst, I discovered that vodka killed it quite wonderfully. I didn’t want to take painkillers because I didn’t like the way they mucked up my mind, so I used alcohol instead. Stupidly, I didn’t consider that alcohol mucks up your mind, too.
The drinking fed a self-destructive spiral. Like the drugs I was taking for the arthritis, alcohol was a depressant – and when I took them in combination, their depressive effects multiplied. I started to question whether life was really worth living.-Daily Mail
Kathleen Turner is now back in the lime light and spending much of her energy on Broadway. She’s also written a book about love and life with Rheumatoid Arthritis as well as her career as a Hollywood star.
In a recent post at Daily Stength , the question, “Do you think DMARDS are worth the risks?” stirred up many emotions and responses. I have decided to pick out some of the posts and share them with all of you. Here is the original question:
I know many of you here on this message board are taking DMARDS. I would like to know how many of you have had mild to severe side effects, do you feel comfortable and safe taking the DMARDS and suppressing your immune systems? Also how long you have been on them and have had a positive influence in your quality of life?
Although most agreed that DMARDS are worth the risks, I had to share my point of view. Here is my reply to the question, and some of the responses that I feel are important to share. If you are trying to decide for yourself what you should do, I highly recommend joining a support group such as Daily Strength to help you weigh out your choices. And although Daily Strength is available to the public, I have excluded names to help people keep their anonymity.
Reply #10 (me):
I’ll go out on a limb here and be the odd one out…..
I was on DMARDS (methotrexate), prednisone and sulfasalazine. They did work but I found that over time my energy and strength level was going down. I also had to increase my mtx dosage over time, one of the reasons my energy level was probably going with it. I was also worried about long term effects on my intestines which are a big part of your immune system. And being at a child-bearing age I felt uncomfortable taking methotrexate in case the unpredictable happened that I got pregnant, as well as I was worried about residual damage left in my body for any future pregnancy I might have.
I think that if you don’t have any other options, DMARDS are definitely worth it…..but I have found other options that have worked really well for me and I believe I’m improving my health. I have hardly any flares any more.
Fibrin which is a big factor in RA and inflammation is what I am controlling by taking Serracor-NK. My lab results have improved exponentially and I have less inflammation now than when I was on the three drugs…mtx, prednisone and sulfasalazine. Serracor also reduces cholesterol. If you look up RA, it is often associated with high cholesterol. Prednisone raises your cholesterol. Cholesterol medications have inadvertently in clinical studies, improved people with arthritis. Serracor uses enzymes to do this. The foods we eat today because they are modified, don’t have the amount of enzymes and nutrition they used to. We would have to eat home grown vegetables all day to get the amount of enzymes Serracor will give you.
I’m also on Low Dose Naltrexone which also improves my immune system by increasing endorphins and decreasing cytokines. LDN helps fight cancer, so again I feel good about this decision. It’s been around for years and there’s many many people online who are on LDN. You can find oodles of youtube videos and stories.
I often feel like people get upset at me for talking about alternative therapies. I’ve been on this site for a long while and asked all the same questions about DMARDs and yes they do work. Please guys, don’t get upset at me for talking about alternative therapies. I do think they are stopping and/or slowing down RA and I think they are a much better choice if they work for you.
I’m not in any way saying that taking DMARDS is a bad decision. All I’m doing is explaining what my experience has been. It took over a year and 1/2 to find the options that I’m on now, so if people are questioning their options I feel bad if I don’t speak up and let them know what I have found.
Reply #11:
Sarah, you’re the shining example of one who succeeded with non-standard drug therapies. I think it’s wonderful that you post an “alternative” view point, and I, for one, appreciate you doing so.
I think everyone needs to weigh all the factors, including cost, the amount of time they’re willing to spend waiting for a drug, what the perceived benefits will be and the risk of side effects. Some have posted about lowered expectations for biologics, because of drug companies or rheumatologists. It’s probably all true, which makes it all the more imperative that everyone get as much information as possible. Doctors aren’t likely to talk about minocycline or LDN, or Serracor-NK, unless you go to someone who specializes, so it’s good to have your input here.
Reply #14:
The studies will tell you that early aggressive treatment will postpone if not stop the joint damage. Conservative treatment with only steroids, NSAIDs or other alternative treatments will result in deformity and significantly shorter lifespan. Even if you don’t hurt your disease is still active. Your tests can be “normal” and your disease can still be active. Without treatment that stops the inflammatory response (not just the pain) on the immune system level your joints are being damaged.
They have proven this in numerous studies which is why any Rhuemy’s in the know will push aggressive treatment. Conventional treatment was resulting in severe deformity and a high morbidity rate. Don’t kid yourself.
I think alternative treatments are great but should be used in conjunction with DMARDS or Biologics… not instead of. Cover all your bases. That being said, I would not take MTX again. The side effects did not equal the benefit in my case… but I still tried it to find that out. The list of things that RA itself can do to you is just as scary as most the drug side effects.
Reply #15:
I have found it interesting to read all of your comments regarding your approach to treating your RA. I have to say I am going to be 62 years old and I have never heard of any one dying from RA – but I have heard of people dying from drug interactions or their long term effects. Years ago people seemed to learn to live with RA using the drugs they used back then. I am concerned over the long term effects of the DMARDS to be honest.
Reply #16:
I too, am one of the people that takes a more conservative approach to medications.
I have had RA for approx. 15 years. I take NSAIDs (tried all the standard ones) and then settled down with Relafen. I also take a DMARD – Plaquenil. It is my understanding that it too is one of the more conservative DMARDs. I may be wrong but the main side effect is that it can affect your eyes. I have been on Plaquenil for 15 years. I get my eyes checked every 6 months, and my Ophthalmologist told me he has not seen any patient on Plaquenil that ever had any problems.
I personally will not take Biologics because of the possible side effects. I can live with pain, I cannot live with some of the potential side effects.
In the end, I feel medication choices are a very personal decision. Everybody is different, their RA is different, and their medication tolerances and reactions are different.
I, too, appreciate Sarah’s posting on alternative therapies.
It is great that we can all post our thoughts and suggestions. Everyone is entitled to their opinions.
Just remember that just because it works (or doesn’t) for one person, does not mean that you will have the same effect.
All you can do is research the possibilities, listen to the advice of folks here, and work with your doctor on what is best for You.
Good Luck!
Reply #17 (me):
Alternative treatments cannot be grouped into one lump sum. They are not all the same, nor do they work all the same, nor do they work the same in all people.
Taking these alternative treatments is an experiment, plain and simple. It may reverse my disease, it may leave me deformed, all I know is that long term, these treatments most likely won’t cause other autoimmune diseases and will most likely improve my health overall.
I’ve chosen to take the risk. In the beginning it was almost impossible for me to get other people to support MY decision to experiment. In fact, most people told me it was a terrible idea. I was on my own for the most part…no support. Two other people jumped on the band wagon on this support group and decided what I was doing was a good idea and that they wanted to try LDN.
Those two went into remission and I didn’t, but I feel WAY better than I used to. They left the support group so I am no longer able to talk with them.
But I’m not complaining too much because my life has changed completely. I can wear high heels again, exercise using weight machines, and live each day almost 99% pain free. NO I can’t do a hand stand because that would be painful, but compared to how I used to be….I am a completely new person. It used to hurt just to have something brush across my toes. I had ganglion cysts on hands and elbows which went away with the Serracor-NK. I always had pleurisy, rashes on my skin, my voice was hoarse, I couldn’t open my jaw…my vision was blurry and my joints made it nearly impossible to do anything. Even sitting, my husband would have to help me get up and down from the couch. I know you all know what I’m talking about.
So even though I know there’s no long term case studies on RA and possible damage with the alternative treatments I have chosen, I feel great about my decision and I’ll continue to share my choices just in case someone out there is anything like me. I personally have never trusted the medical system completely, nor have I trusted doctors completely, and never has a white coat made me feel at ease. I prefer being the one in control, deciding when I should have blood tests, and when I should change medications. I completely understand that I’m the odd one out but to not share my experience makes me feel like I’m not being genuine to myself and not helping someone who might want to hear about another possibility.
I do applaud anyone who stands by their choices. I have always felt it should be your choice, make the doctor work for you, not the other way around.
Hugs,
Sarah
Reply #18:
I must be one of the people with the longest experience with the disease in the site – 10 years on methx. 4 on Kineret.
My experience is that they work extremely well. In fact, they restored my life and eliminated pain,deformities, exhaustion suffering.
BUT, and this is a big BUT – my liver is almost destroyed because of the Methx. I have been on it for 10 years, and steadily getting worse. My ALT was over 300 in Feb. so I went off for 7 weeks and got it down to 67 – only 17 above high normal. Great success, I guess. I went back on, because of pain and exhaustion – it is back up to 200, and my liver scan this week shows fatty liver and the beginnings of cirrohis. From the methx. So I have eliminated everything else that clears through the liver – pain killers, AD’s, Vitamins A D, Omega oils, antihistamines and I have been a vegetarian for almost 40 years. No chemicals, no fats. I am dying to see some long term studies of RA people on methx. How damaging is it? Am I an exception? I am also losing another 25 lbs, to try and get the fat out. Taking milk thistle which is supposed to clear the liver.
Kineret is my biologic and it is THE BEST! Except it is a hassle – daily needles kept refrigerated. I went on this over the other biologics because all the others clear through the liver. Before I started 4 years ago, I had kidney damage – 1st stage failure. The last 6 months, I have been normal. So not only has it not hurt it, somehow my kidneys have regenerated, which I was told wasn’t possible. Try Kineret, watch out for the Methx. On the other hand prednisone is the worst drug in the universe, the side effects are endless and all it does is mask the pain, while the disease progresses.
I think the issue is quality of life and independence versus pain, degeneration and deformities. I choose quality of life, although maybe I will change my mind on my death bed when my liver is failing. LOL. Even during my foot reconstruction I had to go off my meds for 2 weeks and the pain and flares were so bad, it was worse than the surgery. To think I lived like that for years. I couldn’t think, read, or do anything the pain was so bad. I can’t take pain killers either, they give me migraines. (Were the nurses ever upset with my projectile vomiting for 3 hours cause they forced me to take Percocet on an empty stomach for “pain management” after I told them NO! after surgery) No pain killers – deal with the disease. I just hope you have a healthy liver.
If you are severe, take the meds till you find what works for you, and don’t worry about the side effects – RA has worse side effects, in my opinion. I have a cousin who has had RA for 55 years. Put on prednisone at age 3. It dwarfed her, caused bone necrosis of the vertebrae in her neck (read death), and she is constantly in pain. Two years ago she almost died of an RA nodule on her throat joints caratynoid or something. Actually she did die – Hypoxia and heart attack, but she was in the hospital and they revived her – she has a permanent trache. I told her too go on methx. Her rheumie said, “I never thought of it!” She feels better than in years. However, I wouldn’t want her life for anything. 3 hips replacements x 2, 2 knee replacement x2, she can’t use her hands, muscle wasting and in a wheelchair. She can’t even feed herself. That is what RA does long term. It mostly doesn’t kill, but it totally destroys ever joint in your body – even in your throat. I am totally in favor of all aggressive treatment from day 1 – from before the sed rates show up high (I was sed neg for years!).
It is your choice, and the severity and pain should influence your choice. But do search it out, and go for the best treatment you can get.
I always knew I didn’t like smoke and I often offended people when I spoke up about it. Now I wish I had simply done a better job at avoiding second-hand smoke all together. Complaining did nothing for my health. Dating smokers and working in restaurants which exposed me to smoke may have triggered my RA. Watch this video and learn about how studies with identical twins and lab mice can teach you about smoking and environmental toxins.
Whether you are taking DMARDs, Biologics, Alternative therapies or a combination of medications and/or supplements, the answer is to treat your RA aggressively.
I have been told before by friends and family that I take a lot of pills. They are right, I do take a lot of pills! Sometimes I don’t even know if a new therapy is working or if it might work in the future. They might tell me that I should eliminate all of them and try to take only one kind. Honestly I do know which of my medications work the best and they are Low Dose Naltrexone and Serracor-NK. I’ve recently added Serra-RX to the mix of supplements because it consists of the main ingredient of Serracor-NK. Basically, I’m upping the ante if you will. I was feeling impatient and wanting my RA to get under control NOW!! And you know what? I’m glad I did that. I’m glad I’m taking Vitamin D, and Polypodium Leucotomos. I’m glad that I take extra Vitamin C and Fish Oil. I’m glad I’m taking Milk thistle to help keep my liver up to shape. And I’m glad I’m taking probiotics so that my intestinal health is great. Maybe I do take a lot of pills but I’m treating my RA just like you should….aggressively.
In aggressive therapy, the idea is to “stack” the medications until your disease is completely under control. At that point, you can pull back and start taking less of your medications or drop one or more off entirely to see how your body does. Your RA supposedly does the most damage within the first three years, hence another reason why taking a lot of supplements and medication is really a good thing if you’re trying to keep destruction of joints at a minimum. I chose to take LDN and Serracor-NK along with my other supplements which I call “alternative therapy” because I was concerned about the damaging side effects of methotrexate and other options given to me by doctors. I felt that there had to be a way to take control of my disease AND improve my overall health so that there was no fear of getting cancer in the future, more autoimmune diseases, or ruining my ovaries since I haven’t had children yet. These of course are all decisions you have to make and I feel confident in my decision. Below are two videos which show a very comprehensive view of RA, what treatments are given by doctors, the course of the disease, and how all of these things have changed over many years. Sit through it, you will learn a lot!
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.
While cardiologist Conrad Murray goes missing in action, authorities say the doctor, is not a criminal suspect.
“Craig Harvey, a spokesman for the Los Angeles County coroner, said there were no signs of foul play in the autopsy and further tests would be needed to determine cause of death. He said Jackson was taking some unspecified prescription medication but gave few other details.”
“We do not consider him to be uncooperative at this time,” Beck said. “We think that he will assist us in coming to the truth of the facts in this case.”-Huffington Post
Still you have to wonder, with Michael Jackson taking the precaution of having a live-in doctor, why is it that Brian Oxman thought this was bound to happen?
“I said one day we’re going to have this experience. And when Anna Nicole Smith passed away, I said we cannot have this kind of thing with Michael Jackson,” Brian Oxman, a former Jackson attorney and family friend, told NBC’s “Today” show. “The result was I warned everyone, and lo and behold, here we are. I don’t know what caused his death. But I feared this day, and here we are.”
Oxman claimed Jackson had prescription drugs at his disposal to help with pain suffered when he broke his leg after he fell off a stage and for broken vertebrae in his back.”-Huffington Post
Rumor has it that Michael Jackson was using the pain killer Demerol.
“The government warns that mixing it with certain other drugs can lead to reactions including slowed or stopped breathing, shock and cardiac arrest.”-Huffington Post
I know all to well how easy it is to trust that a doctor is looking out for you. When you have someone writing you prescriptions, you trust that they know what’s best. Someone like Michael Jackson probably never even thought about reading the warning labels on his medications. Why would he when he had his own live in doctor? I have to wonder if this doctor even considered his mental health, another problem with the health care industry. You would never have a psychologist sit down with the family doctor and discuss whether it’s safe to prescribe pain killers, and yet that’s the kind of health care I wish we had. Of course most people know MJ’s mental health is at least in question. I think his doctor should have thought twice about giving him pain killers but because this is a business, I’m sure most doctors in this position would do what they thought they needed to do to keep their job. Enzymes could have been a great alternative to pain killers, which would have helped with pain, healing and inflammation. It’s also nearly impossible to take too many. Not only that, his cardiovascular health would have improved! With such a simple solution, why was Michael’s health put in jeopardy?
For myself, I’ll still never forget being prescribed Sulfasalazine. I got the ok from both my gynecologist and rheumatologist that Sulfasalazine would not interfere with birth control pills, later to find that they do interfere with each other. So what does this mean? Do we have a failed health care system?
In my opinion, we absolutely do. Too many times have doctors failed me, and other people. How can a health care system work if it relies on profit? Healthy people are not profitable, and that’s just plain and simple. Cures are not profitable when there are many more medications that can manage a disease. I’m not saying that scientists aren’t searching for cures, but at the same time, I can’t trust a health care system that isn’t meant for everyone.
So yes, in my opinion I think that Michael Jackson’s doctor did fail him. Prescriptions shouldn’t be taken lightly and they shouldn’t be handed out like candy. You shouldn’t have to research your medications because you’re afraid your prescriptions aren’t compatible. You SHOULD be able to simply trust your doctor that he really knows what’s best for you. I hope that one day I’ll feel that way about doctors, that I can trust them fully and completely. And I hope one day I can trust my health insurance company (when I have one again) that they’re not going to drop my coverage if I forget to write that I was treated for acne as a child…..(and that was taken from a true story about a woman who got cancer but the insurance dropped her coverage because she failed to report her childhood acne prescriptions.) Life is short and without the best medical care, it can become even shorter.
Michael Jackson, your music was powerful and your talent, unforgettable. Rest in peace.
And for those of you that loved his music, here’s my favorite song, “It’s the Falling in Love”. I tried to find a better video that really represented this song…but this was the best I could find:
Please donate now and help me with my medical expenses. Any amount would be helpful. Just to give you an idea of how much my average monthly costs are for supplements, here's the breakdown.
Now taking Serracor-NK (see post on Neprinol): $125
Low Dose Naltrexone: $10
Quercetin: $16
Sustinex: $17
Levothyroxine (for Hypothyroidism): $15
If you feel that my blog has helped you, please donate! Thank you so much!
) and interleukin-1 (IL-1) (
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).”-
I’ll go out on a limb here and be the odd one out…..
