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To Susan
How can one possible call minocin “an inexpensive alternative ” at App. 13.00 per capsule of 100 mg –one without insurance coverage taking 200 mg daily would spend 26.00 daily or 780.00 monthly or 9360.00 yearly –Hardly inexpensive !!!!!!
richie
Hi
Compared to the biologics I would think the phrase “less of an obscene cost ” might be a better description .
Richie
Richie,
I'm not using the brand name and I spend $10 a prescription. I only take 100mg MWF so not nearly as high a dose as you. One prescription of 30 capsules last me 10 weeks.
Your cost of $780 a month is approximately the cost of one shot of Enbrel which must be taken twice weekly. Huge difference don't you think?
When I was struck suddenly with RA, I had to quit work and became housebound within 5 mths. I had a very aggressive form. Thankfully, I ignored the rheumatologist who wanted to put me on methotrexate. I sought causes for RA and I found this website among others and found a doctor to help me test for and identify the possible causes of my disease.
We have done so much more than just the AP to heal me.
As a result, I was back to work within 3 mths of treatment. I didn't even run out my COBRA before I was back on insurance. I thank God everyday for my good fortune and I resent a medical world that would happily keep me crippled and dependent upon them for the love of profit.
It also makes me happy to know I am costing my insurance company thousands less than otherwise. Driving their costs up will drive up yours and my costs. That fact will not change if we go to universal, government paid for, healthcare. In the end, we all pay the piper.
It doesn't hurt my feelings either to know that the treatment I use is safe.
Susan
[user=16]richie[/user] wrote:
To Susan
How can one possible call minocin “an inexpensive alternative ” at App. 13.00 per capsule of 100 mg –one without insurance coverage taking 200 mg daily would spend 26.00 daily or 780.00 monthly or 9360.00 yearly –Hardly inexpensive !!!!!!
richie
Michelle's insurance just changed and now she pays $85.00 for a three month supply of Humira. Not everyone is as fortunate, but it illustrates the point that it is difficult to compare cost of treatment because everyone has different insurance and co-pays.
Susan, do you really think the medical world takes pleasure in seeing people crippled? Methotrexate can have nasty side effects, but it is cheap and has helped millions of people all over the world who have been on it for years and years with few side effects. Let's be glad people have all these options that they did not have 100 years ago.
Joe,
I absolutely believe this. There are some greedy people of all walks of life who would gladly infect you or addict you if they stood to gain from it. Can we say tobacco industry?
Having said that, let me also assure you that I also believe people in the alternative world are just as capable of scamming us. ALL people are capable. Most of my clients are poor. They lie to me daily. Sometimes they don't even bother to hide their lies.
Obviously, I can't walk around distrusting everyone. I would not get far, nor would I have gotten this far, without the help of competent, caring doctors and even medicine. I don't want to throw out the baby with the bathwater and am very happy that Michelle is getting good results from Humira. I wanted to get good results from Enbrel but I just kept getting sick and couldn't keep it up.
What I want is a turnaround approach to medicine. I was raised to eat healthy. My mother would actually say things like “eat your brocolli…it has vitamin c, folate and iron. It is good for your heart”. She rattled off the health benefits of the food I ate and it was ingrained into me. Mom didn't work and McDonald's was yet to come.
I grow up and I wanted to do the same for my children. But now I had lots of prepared, prepackaged foods to help me deliver a hot, balanced meal at the end of working all day. I utilize these wonderful foods liberally. I didn't yet know the hazards of preservatives, additives, genetically modified foods.
My kids are grown. I'm older and trying to watch my weight. I'm eating Healthy Choice frozen entrees, washing it down with Arizona Green Tea (I didn't yet know the health hazards of High Fructose Corn Syrup) and ending the meal with a fat free Little Debbie cupcake. I think this crap is healthy. HA!!!!
I love animals and subscribed to Orkin for 10 yrs. Toxic pesticides in my home each month.
No wonder I ended up sick with a chronic illness.
I want our FDA to do its job properly. Unfortunately, money talks there too. Prepared, prepackaged foods are the first offenders to our health and yet they are government approved and filling our grocery stores. Irradiated foods. GMO, additives, preservatives, pesticides. There isn't enough room on this thread to go into all of this.
I choose to eat whole foods, cooked from scratch and organic as much as possible. I shop the outer aisles of the grocery store.
I want doctors to incorporate the medicines of yesterday along with modern medicine and to practice “that which is safe first”. Honestly, doesn't everyone here feel rheumatology should try AP first? Even mainstream doctors are wanting to get away from dispensing so many drugs. Many doctors are recognizing the harm caused by medicating our children. We don't give their immune systems a chance to build a defense. It is like constantly using laxatives until our bowels won't work on their own anymore.
There is not enough room to debate this here Joe. And I humbly apologize to you, Jennifer. Yours is a happy post and I, Joe and Richie are guilty of turning it into a debate.
Joe, I really raised my eyebrows at how quickly you responded about Dr Angell. You knew so much about her. Not that I care if she has an axe to grind. If she had written a book of lies, you can bet she would have been sued. What field of work are you in anyway?
Susan
Hi Susan,
A quick google search can turn up lots of things about people in a very short time. Everything I know about Dr. Angell I learned on various websites after you posted. I had never heard of her before. I think it's a fault of mine but I never take anything at face value and tend to see things in shades of gray rather than black and white.
I work with computer software – pretty boring but it pays the bills.
I do wonder why people end up with chronic disease. The majority of Orkin customers out there who eat packaged food filled with preservatives and pestacides do not have chronic disease. There have to be variables inside of us (genetics) that make us susceptible to these environmental triggers. Toxins can not be regulated out of existence. Would we really want to live in a world that did not offer things like pest control and preservatives? I for one do not want to live like a caveman.
I respect your opinions and don't consider this a debate, just an exchange of opinion. I try to see both sides of an issue. You mentioned the tobacco industry – they would not exist if there was not a demand for their product. Same goes for the packaged food industry. As for doctors, while I agree AP should be offered from the outset right along with all the other treatments, I would not want to require doctors to offer only AP as a first option. We would be headed down a very slippery slope if we started limiting consumer choice based on what a small group of people thought was best for us. The controversy over the Lyme guidelines going on right now is a good example of that.
Hope you have a great weekend!
Joe
Hi Susan
Actually I only pay 60.00 for a 45 day supply –I illustrated a cost without insurance –I sincerely admire your ideals and points of view but in this so-called modern world I doubt that any of it will come to fruition –As to the FDA –why should they be different than most govt. agencies —the Post Office has a virtual monoply but losses a tremendous amount of money –should we go into FEMA's performance —will things change ???–Time will tell —
richie
Agree with all you say Joe.
And yes, I certainly must have had a genetic weakness that allowed rheumatoid arthritis to set in. My husband developed chronic fatigue and vague joint issues that travel but leave no damage. Just found out my dog may have an auto immune disorder too. The vet is basing it on an issue with the dog's nose which started …..drum roll……on the farm where I first got “lyme” in 1995.
From what I can read, they treat these canine A.I. disorders with the exact same immune suppressing drugs we take and steroids for life and the website I found even stated the dogs usually die from the side effects of these drugs! I couldn't believe it! However, the same article said that flagyl frequently helps with the disorder making them suspect a possible infectious origin. “eyes rolling”
If you are interested in reading up on this, the condition is pemphigus.
My husband and I looked at each other and said “all the herbicides, pesticides and Orkin we used at that farm”. Now, I love my dog like she was my child but make no mistake about this…..she has no genetic connection to me whatsoever.
The problem with your logic Joe is that none of us know exactly what our genetic makeup is or how it will be affected by things. Even bacterial infections can alter our DNA.
I am living as chemical free as reasonably possible and do not feel one bit deprived. No extra toil or trouble on me at all. And my dogs don't have fleas.
Of course, if she proves to have an A.I. disorder, I will be looking at alternative means of treatment. 😀
Susan
Hi Richie
I'm for little government and would be happiest if they just left me alone. I think democrats and republicans turn into the same beast whenever they hit D.C.
I've changed my affiliation to Libertarian which believes in small government and sticking to the constitution.
Most of my treatment has been paid for out-of-pocket by choice ( well, I would have taken the insurance money but they don't cover alternative care) and I am very happy with my results.
AP and any prescription drug has been covered without question as I have really strong bloodwork results to back up my doctor.
Susan
Hi Susan,
Just wanted to relate that my first flare was also swift and severe; over 20 joints and w/in 6 months I too was home bound. I think Dr. Brown addresses this pattern a little in Scammell's book. Flare ups that follow are sometimes less severe or in different joints as the bacteria diffuse and burrow in; again, I'll have to look this up to be sure. It's wonderful that you caught these bugs early in THEIR career before they got so entrenched.
As for the environmental factors making us ill, I think it's a genetic crap shoot, like Joe said. My sister grew up in the same house as me, with chain smokers, in the midwest with ragweed and other lovely pollens, and a house full of cats and 2 dogs. A nightmare for asthmatics, I know, but that's another post for a different forum. I had severe asthma from the age of 2, and by the time I was 25, endometriosis and PsA, and for at tleast the last 10 yrs, FMS (or something…Lyme, maybe?). My sister has hardly ever been sick in her entire life. She is 48 and was recently dx's tentatively with PsA, but it's so mild that she just takes fish oil. She runs 5 miles /day. Both of my parents are still alive, they are 71 y/o. My mother quit smoking about 3 yrs ago, my father 20 yrs ago. However, he then started chewing tobacco and still uses it to this day. No sign of cancer, lung disease, much less any AI diseases in either of them. Their diet is terrible and my mother consumes at least a liter of diet coke plus coffee every day.
I have always followed a healthy diet as an adult, and avoided any areas where there might be cigarette smoke. I've always exercised and watched my weight. I was a practicing Mormon until a few yrs ago (again, another post for another time), so I never even drank coffee or any soda with caffeine. Yet here I am, not able to work or even do any real exercise, with severe pain and fatigue. What's the difference btn me and the rest of my family? It's got to be genetics, all of the environmental variables are the same.
I'm not saying that we can eat, drink and be merry, I believe I would be much sicker if I had not exercised and followed a healthy diet. And all 3 of my now grown children have psoriasis but no joint symptoms, with my youngest having childhood asthma but only one hospitalization and vary rarely sick. No symptoms now at all. Would my children be sicker if they had grown up in the same environment I did? My asthmatic was completely healthy until we visited my parents for a month when he was 5, my mother still smoked at that time. He developed “bronchitis”, only he couldn't seem to get better even after we left. About 2 months later he rec'd an official dx of asthma. Would he have developed asthma without the constant exposure to tobacco smoke for a month? It's a question I often ask myself with a great feeling of guilt for not putting my foot down. We couldn't leave as we were in btn military moves and had no housing yet. My older 2 boys also developed mild bronchitis, but it id not turn into asthma. Why?
I don't have all the answers, not even close. Sometimes I feel like all of our medical knowledge adds up to about one page torn out of a very large book. I only feel that there are more factors involved in these “auto-immune” diseases than we know or can control.
[user=404]jlc6166[/user] wrote:
Hi everyone,
:DTake that scleroderma!
WOW! Jennifer, your post warmed my heart. I am so glad that you are feeling better.
Maybe someday, we can get you, Randy and Jess to do a relay triathelon. Jen-RUN, Randy-BIKE, Jess-SWIM. That would make a fun story for the Scleroderma Foundation magazine.
Keep it up, but don't overdo!
Cheryl
Cheryl,
I love the triathlon idea! I am definitely game, and I can also do the swim … if Jess gets eaten by a shark….assuming a shark can catch her!
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Linda,
I too come from a long line of healthy people. Tons! But they didn't live on the edge like your folks. Most everyone reaches centarian. Right now my 82 y.o. mother still drives, teaches Sunday School and has zero health problems. Doesn't even keep aspirin in her house. Her 86 y.o. sister is doing just as well. They lost their 98 y.o. aunt this year who maintained her own home to the very end and passed her latest driving test at 95. Their mother died 3 yrs ago at 103.
See this article about glutathione. I believe it says alot about who gets sick and who does not. I had the gene test. I'm not genetically prone to RA but I am very defective in my ability to produce glutathione.
http://www.vrp.com/articles.aspx?page=LIST&ProdID=1181&qid=&zTYPE=2
[user=223]Randy[/user] wrote:
Cheryl,
I love the triathlon idea! I am definitely game, and I can also do the swim … if Jess gets eaten by a shark….assuming a shark can catch her!
There is a strictly NO SHARKS RULE at the UCSD pool.
Jess really REALLY doesn't like open water.
Cheryl
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