Family history of lupus and rhumatoid arthritis (RhA). Last summer I had my first episode of physically not being able to get out of bed - felt like I had the flu from head to toe. It felt like even the coating on my bones was inflamed. I don't have the words to describe the pain. It lasted a few days, went away, and returned about two months later. This kept happening for some reason unknown. Talked with PCP about it, who could give a flip, quite frankly. To him I'm just another whiny female, but he refers me to a nurologist, who refers me to another nurologist. So on...
Ah, life with rigor mortis...
Tons of blood tests, an MRI, and feeling like I'm going insane - like no one believes me - I get told that there's no definitive diagnosis. I could have lupus or RhA or fibromyalgia - all are auto-immune conditions. I was offered a course of anti-malaria drugs to take to off-set the pain, stiffness, etc. but when I got checking into the side-effects I said, "No f-fing way!" I have two very young kids (ages 1 and 4) and can't afford to be bogged down with side-effects, which could include loosing your perhprial vision - no thank you!)
Here's what I've found out that works for me:
Glucosamine & Chondroitin Sulfate - you can get it at any drug store, over the counter. It helps. Period. It sure beats taking anti-inflammatory medicine all of the time, which was starting to cause stomach problems for me. You have to take it for a couple of weeks at first to feel any changes.
Without getting too graphic or personal, colon health (ahem) can really effect a flair up of this - if I'm eating properly and digesting my food properly, then I have less problems and my symptoms are better controlled.
I've found that if I make myself move more when I feel a flair up coming on, then it's easier to deal with. For instance, making sure I workout three times a week is a must now. If I don't move it means I won't be able to move the next week! Stretching is especially important - I do it daily now.
I haven't become a healthfood fanatic, but I've cut back on eating processed foods, sugar, etc., and cut back on coffee (sniff! my first love!). I have had less stiffness after doing this - less symptoms. It's worth it. I found alcohol had a huge impact on me and basically stopped drinking - I think I have about a drink a week now, if that.
Finally, message is w-o-n-d-e-r-f-u-l -- it will help you move and relax. It's a great treat.
Here's what I'm considering trying:
Acupuncture
Aromatherapy (certainly less painful than acupuncture)
More aggressive diet changes
MSM (Methyl Sulfonyl Methane) - a supplement that is supposed to be a remedy for rheumatoid arthritis - It is supposedly a substance that is naturally found in fresh fruits and vegetables, milk, fish and grains. It is lost during processing of these foods, so we need to ingest it as a supplement.
Here's my disclaimer: I'm not a doctor or nurse - no clinical training. I'm not telling you what to do. Decide for yourself.
You may want to consider:
(1) Get another opinion - if you want or if you can afford it.
(2) Try some alternative medicines - you may even have a doctor in your area who specialized in holistic treatments - check it out
(3) Learn more about the meds - are the side-effects too severe for the benefits you'll receive?
It's up to you - try what works for you. Perhaps someday I'll have to take whatever medication they prescribe because nothing else is working for me anymore, but right now that's not my case... Thank God!
Best of health to you!
p.s.
I'd be curious to know what you decide and what's working for you - please promise me you'll let us know or tag me in a PM.
I did try the Glucosamine & Chondroitin Sulfate for two months and it didn't seem to have any effect. My dad says it helps him, which is why I tried it, but the pain, stiffness and deformity kept getting worse.
Did your doc check your RA factor (via blood test)? My primary doc did and found it to be sky high which is why she referred me to a rheumatologist. The rheumatologist is testing me for a different RA factor and a bunch of other tests, but she is calling it RA because of the first RA test, my family history, and the fact that Lyme's and lupus were ruled out by the first set of blood work. The rheumatologist was surprised by how fast my hands started showing signs of deformity and put me on prednisone and methotrexate. I have been taking the prednisone since Monday and saw instant improvement and am supposed to start on the methotrexate tomorrow as it is a once a week deal. My dad has taken methotrexate for about 10 years, I think, and it keeps him able to use his hands and walk. He considers it a miracle drug.
I will start the metho tomorrow and see how bad I feel from it because I don't know what else to do at this point, but I will try other remedies as well. I seldom drink alcohol, so that is not a problem. I have cut back on caffeine and am drinking lots of water as my chiropractor is convinced that lack of water is a big contributing factor to joint problems. I have been increasing the fresh fruits and vegetables in my diet and have read the general nutritional info the chiro has given me. Much of it is very radical, but I will introduce what I can. Your idea about digestion is one that seems logical and I will pay more attention to that. Also, I have found your recommendation about movement to be very true for me.
Thanks for the details of your condition. I never would have guessed you were having these problems after reading your posts about your active children and busy life. It is encouraging to hear that life goes on and that these conditions are manageable.
I have Crohn's, a Crohn's related skin disease 4 out of every million Crohnies get, Crohn's related joint pain/arthritis, IBS, Fibro and get bad migraines. I know Prednisone intimately. Nasty drug, but ya gotta admire it's side effect of instant death. LOL.
Pred is really a good drug for you to start on, as it will stop the inflammation quickly and get you feeling better. Keep in mind though, after 3 days of use, your entire immune system glands do shut down and you become dependant on the drug. When it's time to get off of it, you have to do a very slow taper to avoid the bad withdrawals it will cause. I have always done the varied taper and been able to stop it's use fairly easily compared to other detoxs I've done off much more addictive drugs I take daily to lower my tolerance to them.
A varied taper is just taking your set dose, then the next day taking 1 to 5 mg less. (The higher your dose, the higher the drop in mg is the rule of thumb doing a detox/taper. The lower the dose, the lower the drop.) The 3rd day you take the set dose again, the 4th you take the lesser dose. Vary back and forth like this for 5 days. On the 6th day, which will be a less mg dose, take it and then stay at that mg dose for the next couple weeks. Then drop your dose again over the course of 5 days. Most find this easier than just dropping 1 to 5 mg immediately and staying at that dose.
The longer you stay on Pred, the more side effect you will have. Bad temper, violent outbursts, constant hunger and it's related weight gain, calcium/bone loss, kidney/liver problems, the list is quite long. Make sure your doc does blood tests to check all your levels every few months to make sure all is ok inside you.
I don't know about the other drug you were given, I've never taken it. I have no insurance or medical help, so I am not able to afford the drugs I should be on daily and only take Lortab 10's, Soma (and Pred as needed). I manage to stay somewhat pain free and can at least sit at my puter all day taking those meds.
I'd say try the meds. You won't know what side effects you will get until you do. Everyone with immuno problems reacts differently to the various meds and treatments out there for us. Feel free to stop in chat too if you'd like to talk more. I'm in there almost every night lurking around and picking on Too Tall when he stops in. Heh.
I think methotrexate is a very low budget way to treat these kinds of problems. I have psoriasis and psoriatic arthritis. I am lucky I get to use Enbrel. It is a newer drug to treat these symptoms, and it does not have the side-effects that methotrexate does. When I first starting taking the shots, I got an allergic reaction at the injection site. I've been doing this almost a year now, and still I HATE getting the shot. I can't look while hubby pokes me. I wish I could treat the source of the problem, the immune system. Enbrel does basically the same thing methotrexate does, slows the immune system to keep it from being overactive which causes the symptoms, arthristis in the joints/psoriasis on the skin. I know they use Enbrel to treat RA now. But you have to get approval from most insurance companies because it is $3,000 a month. :blink:
I've tried some natural remedies with no success. Now that I have the psoriatic arthritis in my left hip, I'm less inspired to do the natural thing. That's just me though. It took a few months of the Enbrel before I stopped having such bad hip pain. It's pretty good now. I have stiffness in that hip occasionally, and I hardly have any pain with it now.
In case you didn't know, methotrexate was originally designed for cancer patients. It lowered the ability of cancerous cells to grow. It's an old drug.
My mother had this for 40 + years prior to her death. I'm beginning to see some of it in myself lately, but I wonder why it took so long. I have been tested and have known for some time that I have the factor. I'm not complaining...but just stating - how variable this can be. My mother's body was barely recognizable as human when she died in 1989.
There was very little treatment for her, but there is so much more now for all these variants.(There are 17 types of auto-immune arthritic conditions)
From the rheumatologist I see yearly, she recommends trying to live at zero stress. I do a fair amount of exercise but she wants me to stretch a whole lot more than "average".
I'm not overwhelmed with side effects of any treatments long term. I am 64 and need nothing other than a pain med which I take anyway for another injury. I figure the long term effects for me are non-existant....I't not likely I'll still be around at 94!
I drink my morning coffee, but I have limited the nightshades....peppers, potatoes (white ones) and tomatoes I eat, but sparingly and I have noticed that makes a difference - YMMV. Water exercise in a pool where my weight is supported is the best thing I've found for effective workouts with no joint impacts.
My mother's life was pretty miserable most of the time but I believe you younger women will fare much better. Newer less toxic treatments are developed from time to time so you can look forward to a much more active lifestyle.
I hear you, BB, but I would warn anyone who thinks there might even be a chance of Lyme disease to not take steroids unless they have ruled Lyme out, because a lowered immune system (from the prednisone) is like inviting the bacteria to go where they want. 'Course, the problem is, the blood tests for Lyme are pretty unreliable.
Scout, you've had a positive RA test, family history and joint distortion. Sounds like RA is it. If it were me (get the wording, I'm not a doctor) and my results were atypical (Chas, your story sounds so Lymie to me) I would seek a Lyme-literate doc, and have him monitor me on a trial of antibiotics. If I have a Jarisch-Herxheimer reaction (symptom flair), I would go with a Lyme diagnosis with or without positive bloodwork.
Okay, with the requisite Lyme sermon out of the way: to answer your question Scout...
I have Lyme arthritis (fairly mild) and Glucosamine did nothing for me, either. Someone suggested the old Jarvis tonic of cider and vinegar, so son and I tried it. I found virtually no improvement in the joints, but we both found a mild antihistamine-type reaction, so it may help you, especially if you are feeling sensitive to sugars and starches. Chas' diet is great for that, too, Lyme patients use those recommendations a lot to keep yeast and sugar sluggishness low.
I'll be back in the morning with a few more ideas, but for now, ZZzzzzzz........
Sorry to hear you're having a rough health issue. You've been on my mind since I read your post yesterday...
Just let me say, that I am reluctant to publicly answer here. When a topic gets into the issues of changing 'eating & lifestyle'... some people can get very hostile. I hope you find the help and relief you're looking for
What I've seen work wonders for curing Rheumatoid Arthritis and other diseases that most people think they'll have to live with forever, is FASTING.
I've done it myself four times, one week each time. My husband just finished three FULL weeks, with excellent success! It's something that might seem too simple of an answer, yet too difficult to accomplish. Knowledge of the subject will relieve the difficulty!
It’s recommended to be done under a TRAINED doctor's supervision. There are preparatory lifestyle changes needed to insure a successful fast. While there are not too many physicians I know of that are trained in this field, Dr. Ben Kim is the most 'sane', common sense Doctor I've come across. He has many articles on his web page/blog, covering several aspects of health & living!
I've spoken with him directly once, and have e-mailed him with a question about my husband's health, which Dr. Kim answered within a few days. On this FASTING web page he talks a little about what Fasting will do. Also, you can type Rheumatoid Arthritis in the search bar at the top of that sites page, and different articles will come up.
This next page has a section on key guidelines that Dr. Kim uses to help people address rheumatoid arthritis with their food and lifestyle choices. The guidelines are after the article about the RA drugs.
The cost of Dr. Kim's Fasting Clinic stay is about $100.00 per day. Not much compared to the cost of regular doctor's visits & drugs to make you comfortable for the rest of your life!
Dr. Kim & his wife recently had a baby. They are taking a break for a few months from the Fasting Clinic, but Dr. Kim continues to write articles weekly, and his regular practice is open. They live in Ontario, Canada.
If after reading his information you have questions, send him an e-mail.
I did try the Glucosamine & Chondroitin Sulfate for two months and it didn't seem to have any effect. My dad says it helps him, which is why I tried it, but the pain, stiffness and deformity kept getting worse.
Did your doc check your RA factor (via blood test)? My primary doc did and found it to be sky high which is why she referred me to a rheumatologist. The rheumatologist is testing me for a different RA factor and a bunch of other tests, but she is calling it RA because of the first RA test, my family history, and the fact that Lyme's and lupus were ruled out by the first set of blood work. The rheumatologist was surprised by how fast my hands started showing signs of deformity and put me on prednisone and methotrexate. I have been taking the prednisone since Monday and saw instant improvement and am supposed to start on the methotrexate tomorrow as it is a once a week deal. My dad has taken methotrexate for about 10 years, I think, and it keeps him able to use his hands and walk. He considers it a miracle drug.
I will start the metho tomorrow and see how bad I feel from it because I don't know what else to do at this point, but I will try other remedies as well. I seldom drink alcohol, so that is not a problem. I have cut back on caffeine and am drinking lots of water as my chiropractor is convinced that lack of water is a big contributing factor to joint problems. I have been increasing the fresh fruits and vegetables in my diet and have read the general nutritional info the chiro has given me. Much of it is very radical, but I will introduce what I can. Your idea about digestion is one that seems logical and I will pay more attention to that. Also, I have found your recommendation about movement to be very true for me.
Thanks for the details of your condition. I never would have guessed you were having these problems after reading your posts about your active children and busy life. It is encouraging to hear that life goes on and that these conditions are manageable.
Yes, I've had several RA factors ran - all of them elevated. I tested neg for Lyme, but haven't ruled it out. Mainly I was told that the symptoms could be condition A, B, or C, and that "time would tell" - and that sometimes a real diagnosis is never reached. There was some joke about how rhumatology is the treatment of symptoms before a diagnosis, or something to that effect. Ha... ha... ha.... Oh, how fun.
About pred...
I had to take pred on and off - I can't take it for a long period of time because, quite frankly, it makes me feel really depressed - like PMS to the tenth power. I just want to lie in the road. I take 10mg for about a week or two - no tapering - but I'm also on it for asthma. Whenever I get a cold or allergies get bad, I end up on pred. I have a love/hate relationship with it - I love the instant anti-inflammatory benefits, but absolutely hate the side-effects. Miserable drug to be on after a while - I had to take it all thoughout my last pregnancy because I was so stuffy the whole time it was the only way I could breathe! This week I just went through a bout of having to take pred because I was having a bad flair up of whateverthehellthisis - I wasn't able to drive until Thursday - it sucked.
Thanks for the comments about how I manage my condition. I honestly try not to talk about it much, even to my husband, because anything that slows me down in anyway is just a huge frustration. He knows when it's bad. But I'm an agenda driven person - I have too much to do to be sick. As the old saying goes, "God put me on this earth to get a certain number of things accomplished. At this rate, I should be able to live forever!"
Now, about the meds you're going to take... methotrexate isn't all that bad. I'm familiar with it. Here's a snip of the side effects:
SIDE EFFECTS: Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. The most frequent reactions include mouth sores, stomach upset, and low white blood counts. Methotrexate can cause severe toxicity of the liver and bone marrow, which require regular monitoring with blood testing. It can cause headache and drowsiness, which may resolve if the dose is lowered. Methotrexate can cause itching, skin rash, dizziness, and hair loss. A dry, non-productive cough can be a result of a rare lung toxicity.
Maybe you know this already, but when a company reports side effects, they are reporting what everyone who they tested the drug on reported as a symptom during that trial. For example, say they give 2,000 patients NewDrugXYZ. One patient says, "I got vertigo from that drug!" then the company has to report "Vertigo" as a symptom. Even if only one patient in 2,000,000 makes that claim. So, the shopping list you get for these meds isn't always what Joe Patient can expect.
Again, keep us posted. There's been some great posts here and lots of info to consider.
Thanks so much to everyone for the overwhelmingly helpful response and vast amount of information. This is a great start and I will go through the webesites everyone has recommended. Is there a link to the Jeff Rath website somewhere that I am just not seeing?
In WayWorld the goofy, offbeat, alternative health regimen was always endorsed, and usually without a scintilla of evidence in it's favor.
Looky, we're not kids anymore. You've got a real ailment, you owe it to yourself to get REAL treatment.
I'd love to think that there was some magical cure out there for just about any malady. Just get the right herb or the right aroma or the right crystal or find that person with the special gift, and Voila! instant healing
Problem is, things don't work out like that in REAL life. If there doesn't seem to be any solid, complete explanation of the way some treatment works, I'd be wary.
Caveat emptor (a lesson that was NEVER taught in TWI)...
Thank you. dmiller. That appears to be the website.
Thank you, George, for your input. I am taking the prescribed meds, will keep my July rheumatologist appt and will get my bloodwork done faithfully. I will also continue seeing my chiropractor once a month and try some of the therapies suggested here. I have seen great results from medical treatments via my dad, but have also heard of good results from other sources as well and don't want to close the door on those possibilities.
The interest in alternative therapies, for me, is not a residual "Waybrain" attitude, but stems from a woman I worked with several years ago. She had a PhD in biochemistry, was from a highly educated family and had RA. I doubt she had even heard of TWI. She was unhappy with the treatment and results she got from the medical establishment and developed her own diet and lifestyle program. I saw her go from walking with a cane and usually in pain to being able to run and move freely without pain. I don't know that I will get the same results as her, but I am willing to try diet changes, fasting, different types of exercise. They are good health practices anyway.
Once again, thank you for your input and adding balance to the discussion.
In WayWorld the goofy, offbeat, alternative health regimen was always endorsed, and usually without a scintilla of evidence in it's favor.
Looky, we're not kids anymore. You've got a real ailment, you owe it to yourself to get REAL treatment.
I'd love to think that there was some magical cure out there for just about any malady. Just get the right herb or the right aroma or the right crystal or find that person with the special gift, and Voila! instant healing
Problem is, things don't work out like that in REAL life. If there doesn't seem to be any solid, complete explanation of the way some treatment works, I'd be wary.
Caveat emptor (a lesson that was NEVER taught in TWI)...
Thanks for you input, Dr. Aar... whoops! You mean, you don't have M.D. after your name?
So sorry.
But yet, there you sit, comfortable as can be, typing away your expertise on a subject that I don't remember you as saying y-o-u live with... am I wrong? I find it interesting that the link you posted had no data on questionable alternative arthritis treatments.... hmmmm.... That could be because a condition that's not easy for physicians to diagnose and treat, isn't one they're going to take to task too badly as "quackery"
I study medical errors for a living - it's called healthcare quality management. I am also a patient advocate. I work for a large, regional hospital in NH. I can tell you that in 1999, it was reported nationally that medical errors killed an estimated 44,000 to 98,000 patients a year. That's just in America. That's not a world-wide statistic. It's the equivilent of a jumbo jet crashing every day - 365 days. But yet we still trust hospitals, don't we? We still think that the doctors, nurses, therapists, etc., all have our best interest at heart.
Alternative Medicine is just that - alternative treatment, secondary to clinical medical treatment. Hospitals are starting to use it - calling it "Complimentary Medicine" - hmmm.... interesting. If you read my post and many others, you will see where we have all gone the clinical route. Have you ever had to take a medication that actually made you sicker than the disease or symptom that it was supposed to cure? Personally, I chose not to pursue it anymore because the medications have side-effects that I'm not willing to put up with, quite frankly. I still take some of them, like Pred, but to me, and many of others I've talked to about this condition, it's more about WHAT WORKS FOR YOU.... when that no longer works, then I'll try something else.
Really, George, it's more about BALANCE.
As someone who works in healthcare, I can tell you that in treating a patient, the patient first and foremost has to believe in the doctor and the therapy. A patient will do much better when treated by a physician that they can relate to, confide in, and find approachable. An patient who has received education about their ailment and treatment will be more compliant, be more apt to schedule follow-up appointments, and so on.
With a condition such as this, there is no way to guarantee treatment will work. Unfortunately, it's a condition that can go without a definative diagnosis for many years - it's often a "catch all" phrase that's used when someone has a constellation of symptoms. Hence, patients will try any and everything to bring relief - and it may seem outlandish to you, but if it works for the patient, then why not?
Personally, my opting for the alternative therapies come from all of the hours spend in physicians' offices, emergency rooms, getting lab work done, waiting for results, and just asking lots and lots of questions. So far, I haven't read anyone's post on here, who doesn't really talk about their dealings with this issue, who haven't mentioned how they've pursued this clinically.
The flip side of this, is that Arthritis treatment has been recently listed as one of the top 20 key initiatives that need to be changed about healthcare. The reason is that many insurance companies will not pay for long-term treatment (prescriptions) of this condition. Patients are having to pay for very costly medications, which cause many patients to be non-compliant in their treatment. They are turning to more alternative treatments because (a) they're more affordable and (b) they get some relief. It this sort of "insurance driven healthcare" dialemma that makes me hate the field I work in - we need serious reform in this country, but that's another thread isn't it?
I'd love to think that there was some magical cure out there for just about any malady. Just get the right herb or the right aroma or the right crystal or find that person with the special gift, and Voila! instant healing
Besides, if the placebo effect works, then why knock it? You could say the same thing about prayer, too, right? It's not proven, so don't you dare use it.
O.K. did I CLAIM to be a [edited profane language] doctor?
Sorry, but you are right. I've lived my entire life without the slightest medical issues bothering me EVER.
You and a few of your friends are probably the only ones who've ever suffered any such problems.
And if you'd like to spend your life stroking a rabbit's foot or having your chakra adjusted, be my guest.
But Alternative Medicine that works soon becomes MAINSTEAM medicine. All one need do is perform the basic clinical trials, publish the results in a peer-reveiwed journal and before you know it, it will become accepted therapy. That is, if the results are postive.
Funny that so few of the alternative crowd bother with that regimen? Maybe it's because it's easier to sell snakeoil - and take advantage of the desperate - than it is to do real science?
Maybe?
Anyway, I WAS trying to be nice.
Best wishes to you Mr. Finch on your treatment, whatever it is.
O.K. did I CLAIM to be a [edited profane language] doctor?
[No, but you certainly posted like someone who was an authority on the subject, in my opinion. You make some strong statements and came across rather judgemental. This is my opinion. Period.]
Sorry, but you are right. I've lived my entire life without the slightest medical issues bothering me EVER.
You and a few of your friends are probably the only ones who've ever suffered any such problems.
And if you'd like to spend your life stroking a rabbit's foot or having your chakra adjusted, be my guest.
[Thank you for your unsolicited permission. Although I understand what you're trying to say, I think that if you look at some of the personal accounts here and what others have tried, then perhaps you can understand what we're saying. No one has talked about chakra, or anything of the like. Again, you're going to extremes.]
But Alternative Medicine that works soon becomes MAINSTEAM medicine. All one need do is perform the basic clinical trials, publish the results in a peer-reveiwed journal and before you know it, it will become accepted therapy. That is, if the results are postive.
[bINGO! Give that man a Baby Ruth! Did you read what I said about hospitals using alternative medicine? Yes, it's becoming more mainstream, as it's been proven. I don't think anyone here has mentioned anything really "out there" for treatment. So we agree here.]
Funny that so few of the alternative crowd bother with that regimen? Maybe it's because it's easier to sell snakeoil - and take advantage of the desperate - than it is to do real science?
[The problem with alternative medicine is organization - few companies or groups are able to get it together enough to get through all the red tape that's put in place by the FDA. Clinical trials cost big bucks. Seriously big bucks. If you want a real fun time, try writing for a grant sometime for something that's healthcare related - -I can assure you, it will make your annual tax preparation look like a walk in the park! Again, this is something that should fall into the categoy of how this country needs to change healthcare - if these remedies actually work and are less expensive, then why the heck aren't we getting them approved? It's because the insurance companies drive healthcare in this country. Sorry, but that's the bottom line.
Yes, there's some crud out there that has no business being called medicine. But I think it's poor logic to lump it all together to call it all 'quackery' or 'snake oil'. At this point in our society and healthcare structure alternative therapies have to be considered on a consumer level - what's safe? what's worth making available? what will do the least harm? If Joe Patient wants to take MSM, a supplement which has no known side-effects, and he thinks it works for him, then sobeit. How can you judge what one person or ten people or 100 people all say works or doesn't work for them.]
Maybe?
Anyway, I WAS trying to be nice.
Best wishes to you Mr. Finch on your treatment, whatever it is.
[And again, Peace.
My first post directed to you isn't a personal attack on you. I disagree with your post. It doesn't mean that I have a problem with y-o-u. As always, you are welcome to disagree with me - I'm sure you do, and that's fine. Personally, I enjoy a good debate, and if it's about healthcare - something near and dear to me - then all the better! I want to know what others think about it and improvements we need to make. It's a passion. ]
BTW, just so you know MY bias, I spent about 20 YEARS going to chiropractors, massage therapists, and Osteopaths for treatment until FINALLY I couldn't move my hands anymore and was in so much pain that I couldn't sleep.
I went to one of those evil, knuckle-dragging, devil-possessed MDs and, lo and behold, after about 20 minutes of surgery, I felt better than I had in TWENTY YEARS. Unfortunately, due to the length of time I went untreated I did irreversible harm to the nerves in my arms. Consequently I have little sensation in my hands anymore, and tend to drop things more often than I used to.
I also watched my uncle slowly morph into an unrecognizable, twisted blob of humanity due to RA. He tried all the alternative stuff and those practitioners fed on him unmercifully. My sister is battling RA as well, and I'm starting to show symptoms myself. So I'm not a stranger to the ailment. I'm just not willing to pay somebody to perform pointless procedures on me in the expectation that "Well, it can't hurt!" Sorry, but it CAN, and DOES - everyday.
And no, the fact that I can have an opinion doesn't make me a doctor. The folks that seem to favor the altrenative regimen get a free pass from you on that count, though (it seems).
Medical doctors have developed their medical expertise due to trial and error over many years. Who can say that any try for treatment by some is wrong. The medical profession is not perfect, They have always tried to protect themselves from endorsing treatment that would cut into their profession and livelihood.
Geo, I have no problem being VERY skeptical of alternative therapies. I frequent a Lyme message board where a lot of strange alternative therapies are propounded (foot patches, ICHT, Rife, colloidal silver, frequent colonics, people who take dozens of pills a day, etc.), and I absolutely advocate for science-backed medicine. It's actually funny that I'm talking about alternative here.
However, there are times where a conservative use of alternative medicine is warranted, although if someone is seriously ill, HE SHOULD BE WORKING WITH A KNOWLEDGEABLE DOCTOR.
(Ow, that hurt my ears... :D )
I know of people for whom allopathic medicines didn't work. I know of some who don't tolerate the side effects of traditional medicines (they can be worse than the disease itself for some) and just seek enough symptom relief in the gentlest way they can think of to allow them to function. And the cost of traditional medicine sadly keeps some patients away.
Then there are some who just believe that "natural is better." Of course that's not always true. And we often have less certainty about the content of "natural supplements" than we do of synthetic ones.
And Chas, we both know that some natural herbs and alternative therapies can have side effects that are just as serious as those of allopathic medicine. So I will never advocate for all alternative treatments as safe, and I'm sure you wouldn't either.
Geo, some vitamins, supplements, and alternative products have been studied scientifically. But some products just don't get tested because their use isn't profitable enough to warrant the expense. Some of the biggest funders for longterm double-blind studies are the prescription drug companies.
And don't get me started on peer-review publishing! There are actually 2 standards of care in Lyme treatment, and the guidelines for both have been published in peer-review. Legally, that leaves the decision for how to treat up to the patient. Yet Lyme doctors' licenses are being threatened for their treatment of patients using the long-term antibiotic treatment protocol. A respected doctor in NC who treats HIV and Lyme will be involved in medical board hearings this week for exactly that.
There are two pretty badly-constructed published studies that researchers claim "proves" that long term antibiotic therapy does nothing for persistent Lyme disease. And the extrapolations from those studies -- that chronic Lyme doesn't even exist -- defy logic. A third study, by a doctor from Columbia who has published numerous times before, refutes the conclusions of the other 2 studies. The study that shows that longer-term antibiotic therapy can be effective in the treatment of persistent Lyme symptoms has been held up in the peer-review process for over a year now. Why? don't wanna pi** off a few good ol' boys?
So I am not a huge believer in the peer-review process as the perfect solution to getting to good science.
And while I'm on my "favorite" subject, read THIS, the most succinct thing I've ever seen (by my Lyme doc, no less! :D ) about the problems of accurate testing, diagnosis, and treatment of tick-borne disease.
If any of you have any inkling that you may have Lyme disease despite negative tests, you should read this article.
Just adding to the above, that the doctor who wrote the article I linked to has also published extensively in peer-review, and I am sure can back up every fact he presents with solid research, as he usualy has a lengthy bibliography when he publishes.
Scout, I also thought I'd tell you that I tried SAM-E a couple of years ago when my Lyme arthritis was getting worse. It worked great for that, and for mood enhancement. No, not that kind of mood enhancement ;) , it just took the "feeling down" feeling away. But be warned: my first reaction from SAM-E was mildly manic, about 4 days into taking it, so I think anyone with bipolar should stay away from this one! The positive effect on joints took weeks to develop.
When I got worse even on the SAM-E, I discontinued and went back on antibiotics. I currently take only a multivitamin, Co-Q10, and lecithin. I work over 30 hours a week, mostly as a dance and gymnastics teacher.
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ChasUFarley
Oh, boy....
Here's the Reader's Digest of my story:
Family history of lupus and rhumatoid arthritis (RhA). Last summer I had my first episode of physically not being able to get out of bed - felt like I had the flu from head to toe. It felt like even the coating on my bones was inflamed. I don't have the words to describe the pain. It lasted a few days, went away, and returned about two months later. This kept happening for some reason unknown. Talked with PCP about it, who could give a flip, quite frankly. To him I'm just another whiny female, but he refers me to a nurologist, who refers me to another nurologist. So on...
Ah, life with rigor mortis...
Tons of blood tests, an MRI, and feeling like I'm going insane - like no one believes me - I get told that there's no definitive diagnosis. I could have lupus or RhA or fibromyalgia - all are auto-immune conditions. I was offered a course of anti-malaria drugs to take to off-set the pain, stiffness, etc. but when I got checking into the side-effects I said, "No f-fing way!" I have two very young kids (ages 1 and 4) and can't afford to be bogged down with side-effects, which could include loosing your perhprial vision - no thank you!)
Here's what I've found out that works for me:
Glucosamine & Chondroitin Sulfate - you can get it at any drug store, over the counter. It helps. Period. It sure beats taking anti-inflammatory medicine all of the time, which was starting to cause stomach problems for me. You have to take it for a couple of weeks at first to feel any changes.
Without getting too graphic or personal, colon health (ahem) can really effect a flair up of this - if I'm eating properly and digesting my food properly, then I have less problems and my symptoms are better controlled.
I've found that if I make myself move more when I feel a flair up coming on, then it's easier to deal with. For instance, making sure I workout three times a week is a must now. If I don't move it means I won't be able to move the next week! Stretching is especially important - I do it daily now.
I haven't become a healthfood fanatic, but I've cut back on eating processed foods, sugar, etc., and cut back on coffee (sniff! my first love!). I have had less stiffness after doing this - less symptoms. It's worth it. I found alcohol had a huge impact on me and basically stopped drinking - I think I have about a drink a week now, if that.
Finally, message is w-o-n-d-e-r-f-u-l -- it will help you move and relax. It's a great treat.
Here's what I'm considering trying:
Acupuncture
Aromatherapy (certainly less painful than acupuncture)
More aggressive diet changes
MSM (Methyl Sulfonyl Methane) - a supplement that is supposed to be a remedy for rheumatoid arthritis - It is supposedly a substance that is naturally found in fresh fruits and vegetables, milk, fish and grains. It is lost during processing of these foods, so we need to ingest it as a supplement.
Here's my disclaimer: I'm not a doctor or nurse - no clinical training. I'm not telling you what to do. Decide for yourself.
You may want to consider:
(1) Get another opinion - if you want or if you can afford it.
(2) Try some alternative medicines - you may even have a doctor in your area who specialized in holistic treatments - check it out
(3) Learn more about the meds - are the side-effects too severe for the benefits you'll receive?
It's up to you - try what works for you. Perhaps someday I'll have to take whatever medication they prescribe because nothing else is working for me anymore, but right now that's not my case... Thank God!
Best of health to you!
p.s.
I'd be curious to know what you decide and what's working for you - please promise me you'll let us know or tag me in a PM.
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Scout Finch02
I did try the Glucosamine & Chondroitin Sulfate for two months and it didn't seem to have any effect. My dad says it helps him, which is why I tried it, but the pain, stiffness and deformity kept getting worse.
Did your doc check your RA factor (via blood test)? My primary doc did and found it to be sky high which is why she referred me to a rheumatologist. The rheumatologist is testing me for a different RA factor and a bunch of other tests, but she is calling it RA because of the first RA test, my family history, and the fact that Lyme's and lupus were ruled out by the first set of blood work. The rheumatologist was surprised by how fast my hands started showing signs of deformity and put me on prednisone and methotrexate. I have been taking the prednisone since Monday and saw instant improvement and am supposed to start on the methotrexate tomorrow as it is a once a week deal. My dad has taken methotrexate for about 10 years, I think, and it keeps him able to use his hands and walk. He considers it a miracle drug.
I will start the metho tomorrow and see how bad I feel from it because I don't know what else to do at this point, but I will try other remedies as well. I seldom drink alcohol, so that is not a problem. I have cut back on caffeine and am drinking lots of water as my chiropractor is convinced that lack of water is a big contributing factor to joint problems. I have been increasing the fresh fruits and vegetables in my diet and have read the general nutritional info the chiro has given me. Much of it is very radical, but I will introduce what I can. Your idea about digestion is one that seems logical and I will pay more attention to that. Also, I have found your recommendation about movement to be very true for me.
Thanks for the details of your condition. I never would have guessed you were having these problems after reading your posts about your active children and busy life. It is encouraging to hear that life goes on and that these conditions are manageable.
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BikerBabe
I have Crohn's, a Crohn's related skin disease 4 out of every million Crohnies get, Crohn's related joint pain/arthritis, IBS, Fibro and get bad migraines. I know Prednisone intimately. Nasty drug, but ya gotta admire it's side effect of instant death. LOL.
Pred is really a good drug for you to start on, as it will stop the inflammation quickly and get you feeling better. Keep in mind though, after 3 days of use, your entire immune system glands do shut down and you become dependant on the drug. When it's time to get off of it, you have to do a very slow taper to avoid the bad withdrawals it will cause. I have always done the varied taper and been able to stop it's use fairly easily compared to other detoxs I've done off much more addictive drugs I take daily to lower my tolerance to them.
A varied taper is just taking your set dose, then the next day taking 1 to 5 mg less. (The higher your dose, the higher the drop in mg is the rule of thumb doing a detox/taper. The lower the dose, the lower the drop.) The 3rd day you take the set dose again, the 4th you take the lesser dose. Vary back and forth like this for 5 days. On the 6th day, which will be a less mg dose, take it and then stay at that mg dose for the next couple weeks. Then drop your dose again over the course of 5 days. Most find this easier than just dropping 1 to 5 mg immediately and staying at that dose.
The longer you stay on Pred, the more side effect you will have. Bad temper, violent outbursts, constant hunger and it's related weight gain, calcium/bone loss, kidney/liver problems, the list is quite long. Make sure your doc does blood tests to check all your levels every few months to make sure all is ok inside you.
I don't know about the other drug you were given, I've never taken it. I have no insurance or medical help, so I am not able to afford the drugs I should be on daily and only take Lortab 10's, Soma (and Pred as needed). I manage to stay somewhat pain free and can at least sit at my puter all day taking those meds.
I'd say try the meds. You won't know what side effects you will get until you do. Everyone with immuno problems reacts differently to the various meds and treatments out there for us. Feel free to stop in chat too if you'd like to talk more. I'm in there almost every night lurking around and picking on Too Tall when he stops in. Heh.
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Nottawayfer
I think methotrexate is a very low budget way to treat these kinds of problems. I have psoriasis and psoriatic arthritis. I am lucky I get to use Enbrel. It is a newer drug to treat these symptoms, and it does not have the side-effects that methotrexate does. When I first starting taking the shots, I got an allergic reaction at the injection site. I've been doing this almost a year now, and still I HATE getting the shot. I can't look while hubby pokes me. I wish I could treat the source of the problem, the immune system. Enbrel does basically the same thing methotrexate does, slows the immune system to keep it from being overactive which causes the symptoms, arthristis in the joints/psoriasis on the skin. I know they use Enbrel to treat RA now. But you have to get approval from most insurance companies because it is $3,000 a month. :blink:
I've tried some natural remedies with no success. Now that I have the psoriatic arthritis in my left hip, I'm less inspired to do the natural thing. That's just me though. It took a few months of the Enbrel before I stopped having such bad hip pain. It's pretty good now. I have stiffness in that hip occasionally, and I hardly have any pain with it now.
In case you didn't know, methotrexate was originally designed for cancer patients. It lowered the ability of cancerous cells to grow. It's an old drug.
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krys
My mother had this for 40 + years prior to her death. I'm beginning to see some of it in myself lately, but I wonder why it took so long. I have been tested and have known for some time that I have the factor. I'm not complaining...but just stating - how variable this can be. My mother's body was barely recognizable as human when she died in 1989.
There was very little treatment for her, but there is so much more now for all these variants.(There are 17 types of auto-immune arthritic conditions)
From the rheumatologist I see yearly, she recommends trying to live at zero stress. I do a fair amount of exercise but she wants me to stretch a whole lot more than "average".
I'm not overwhelmed with side effects of any treatments long term. I am 64 and need nothing other than a pain med which I take anyway for another injury. I figure the long term effects for me are non-existant....I't not likely I'll still be around at 94!
I drink my morning coffee, but I have limited the nightshades....peppers, potatoes (white ones) and tomatoes I eat, but sparingly and I have noticed that makes a difference - YMMV. Water exercise in a pool where my weight is supported is the best thing I've found for effective workouts with no joint impacts.
My mother's life was pretty miserable most of the time but I believe you younger women will fare much better. Newer less toxic treatments are developed from time to time so you can look forward to a much more active lifestyle.
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shazdancer
I hear you, BB, but I would warn anyone who thinks there might even be a chance of Lyme disease to not take steroids unless they have ruled Lyme out, because a lowered immune system (from the prednisone) is like inviting the bacteria to go where they want. 'Course, the problem is, the blood tests for Lyme are pretty unreliable.
Scout, you've had a positive RA test, family history and joint distortion. Sounds like RA is it. If it were me (get the wording, I'm not a doctor) and my results were atypical (Chas, your story sounds so Lymie to me) I would seek a Lyme-literate doc, and have him monitor me on a trial of antibiotics. If I have a Jarisch-Herxheimer reaction (symptom flair), I would go with a Lyme diagnosis with or without positive bloodwork.
Okay, with the requisite Lyme sermon out of the way: to answer your question Scout...
I have Lyme arthritis (fairly mild) and Glucosamine did nothing for me, either. Someone suggested the old Jarvis tonic of cider and vinegar, so son and I tried it. I found virtually no improvement in the joints, but we both found a mild antihistamine-type reaction, so it may help you, especially if you are feeling sensitive to sugars and starches. Chas' diet is great for that, too, Lyme patients use those recommendations a lot to keep yeast and sugar sluggishness low.
I'll be back in the morning with a few more ideas, but for now, ZZzzzzzz........
-- Shaz
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allan w.
Google in Jeff Raths homepage. Jeff is (ex- twi ) His information on natural cures is brilliant.
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Goey
Try a Google search for "coconut oil arthritis".
1-4 tbs of coconut oil daily might help you.
It is also extremely good for the immune system, having
excellent anitviral, and antimicrobal properties..
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shazdancer
http://www.ilads.org/burrascano_1102.htm#supplements
Stretching, yes! Yoga, ballet, swimming and water exercise, walking, weight training but don't overdo.
Heat, ahhh... epsom salt baths, sauna.
Rest, and stress reduction.
More later,
Shaz
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SafariVista
Hello Scout Finch02~
Sorry to hear you're having a rough health issue. You've been on my mind since I read your post yesterday...
Just let me say, that I am reluctant to publicly answer here. When a topic gets into the issues of changing 'eating & lifestyle'... some people can get very hostile. I hope you find the help and relief you're looking for
What I've seen work wonders for curing Rheumatoid Arthritis and other diseases that most people think they'll have to live with forever, is FASTING.
I've done it myself four times, one week each time. My husband just finished three FULL weeks, with excellent success! It's something that might seem too simple of an answer, yet too difficult to accomplish. Knowledge of the subject will relieve the difficulty!
It’s recommended to be done under a TRAINED doctor's supervision. There are preparatory lifestyle changes needed to insure a successful fast. While there are not too many physicians I know of that are trained in this field, Dr. Ben Kim is the most 'sane', common sense Doctor I've come across. He has many articles on his web page/blog, covering several aspects of health & living!
I've spoken with him directly once, and have e-mailed him with a question about my husband's health, which Dr. Kim answered within a few days. On this FASTING web page he talks a little about what Fasting will do. Also, you can type Rheumatoid Arthritis in the search bar at the top of that sites page, and different articles will come up.
Here is Dr. Ben Kim's web page on FASTING.
Dr. Ben Kim
This next page has a section on key guidelines that Dr. Kim uses to help people address rheumatoid arthritis with their food and lifestyle choices. The guidelines are after the article about the RA drugs.
Dr. Ben Kim
The cost of Dr. Kim's Fasting Clinic stay is about $100.00 per day. Not much compared to the cost of regular doctor's visits & drugs to make you comfortable for the rest of your life!
Dr. Kim & his wife recently had a baby. They are taking a break for a few months from the Fasting Clinic, but Dr. Kim continues to write articles weekly, and his regular practice is open. They live in Ontario, Canada.
If after reading his information you have questions, send him an e-mail.
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ChasUFarley
Yes, I've had several RA factors ran - all of them elevated. I tested neg for Lyme, but haven't ruled it out. Mainly I was told that the symptoms could be condition A, B, or C, and that "time would tell" - and that sometimes a real diagnosis is never reached. There was some joke about how rhumatology is the treatment of symptoms before a diagnosis, or something to that effect. Ha... ha... ha.... Oh, how fun.
About pred...
I had to take pred on and off - I can't take it for a long period of time because, quite frankly, it makes me feel really depressed - like PMS to the tenth power. I just want to lie in the road. I take 10mg for about a week or two - no tapering - but I'm also on it for asthma. Whenever I get a cold or allergies get bad, I end up on pred. I have a love/hate relationship with it - I love the instant anti-inflammatory benefits, but absolutely hate the side-effects. Miserable drug to be on after a while - I had to take it all thoughout my last pregnancy because I was so stuffy the whole time it was the only way I could breathe! This week I just went through a bout of having to take pred because I was having a bad flair up of whateverthehellthisis - I wasn't able to drive until Thursday - it sucked.
Thanks for the comments about how I manage my condition. I honestly try not to talk about it much, even to my husband, because anything that slows me down in anyway is just a huge frustration. He knows when it's bad. But I'm an agenda driven person - I have too much to do to be sick. As the old saying goes, "God put me on this earth to get a certain number of things accomplished. At this rate, I should be able to live forever!"
Now, about the meds you're going to take... methotrexate isn't all that bad. I'm familiar with it. Here's a snip of the side effects:
SIDE EFFECTS: Methotrexate can be well tolerated, but also can cause severe toxicity which is usually related to the dose taken. The most frequent reactions include mouth sores, stomach upset, and low white blood counts. Methotrexate can cause severe toxicity of the liver and bone marrow, which require regular monitoring with blood testing. It can cause headache and drowsiness, which may resolve if the dose is lowered. Methotrexate can cause itching, skin rash, dizziness, and hair loss. A dry, non-productive cough can be a result of a rare lung toxicity.
Maybe you know this already, but when a company reports side effects, they are reporting what everyone who they tested the drug on reported as a symptom during that trial. For example, say they give 2,000 patients NewDrugXYZ. One patient says, "I got vertigo from that drug!" then the company has to report "Vertigo" as a symptom. Even if only one patient in 2,000,000 makes that claim. So, the shopping list you get for these meds isn't always what Joe Patient can expect.
Again, keep us posted. There's been some great posts here and lots of info to consider.
Hope you're feeling better soon.
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Scout Finch02
Thanks so much to everyone for the overwhelmingly helpful response and vast amount of information. This is a great start and I will go through the webesites everyone has recommended. Is there a link to the Jeff Rath website somewhere that I am just not seeing?
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dmiller
Hmmm -- is this the JEFF RATH site you are looking for??
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George Aar
I don't wanna rain on anybody's parade, but...
You might want to take a look at this site as well.
http://www.quackwatch.org/index.html
In WayWorld the goofy, offbeat, alternative health regimen was always endorsed, and usually without a scintilla of evidence in it's favor.
Looky, we're not kids anymore. You've got a real ailment, you owe it to yourself to get REAL treatment.
I'd love to think that there was some magical cure out there for just about any malady. Just get the right herb or the right aroma or the right crystal or find that person with the special gift, and Voila! instant healing
Problem is, things don't work out like that in REAL life. If there doesn't seem to be any solid, complete explanation of the way some treatment works, I'd be wary.
Caveat emptor (a lesson that was NEVER taught in TWI)...
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Scout Finch02
Thank you. dmiller. That appears to be the website.
Thank you, George, for your input. I am taking the prescribed meds, will keep my July rheumatologist appt and will get my bloodwork done faithfully. I will also continue seeing my chiropractor once a month and try some of the therapies suggested here. I have seen great results from medical treatments via my dad, but have also heard of good results from other sources as well and don't want to close the door on those possibilities.
The interest in alternative therapies, for me, is not a residual "Waybrain" attitude, but stems from a woman I worked with several years ago. She had a PhD in biochemistry, was from a highly educated family and had RA. I doubt she had even heard of TWI. She was unhappy with the treatment and results she got from the medical establishment and developed her own diet and lifestyle program. I saw her go from walking with a cane and usually in pain to being able to run and move freely without pain. I don't know that I will get the same results as her, but I am willing to try diet changes, fasting, different types of exercise. They are good health practices anyway.
Once again, thank you for your input and adding balance to the discussion.
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ChasUFarley
Thanks for you input, Dr. Aar... whoops! You mean, you don't have M.D. after your name?
So sorry.
But yet, there you sit, comfortable as can be, typing away your expertise on a subject that I don't remember you as saying y-o-u live with... am I wrong? I find it interesting that the link you posted had no data on questionable alternative arthritis treatments.... hmmmm.... That could be because a condition that's not easy for physicians to diagnose and treat, isn't one they're going to take to task too badly as "quackery"
I study medical errors for a living - it's called healthcare quality management. I am also a patient advocate. I work for a large, regional hospital in NH. I can tell you that in 1999, it was reported nationally that medical errors killed an estimated 44,000 to 98,000 patients a year. That's just in America. That's not a world-wide statistic. It's the equivilent of a jumbo jet crashing every day - 365 days. But yet we still trust hospitals, don't we? We still think that the doctors, nurses, therapists, etc., all have our best interest at heart.
Alternative Medicine is just that - alternative treatment, secondary to clinical medical treatment. Hospitals are starting to use it - calling it "Complimentary Medicine" - hmmm.... interesting. If you read my post and many others, you will see where we have all gone the clinical route. Have you ever had to take a medication that actually made you sicker than the disease or symptom that it was supposed to cure? Personally, I chose not to pursue it anymore because the medications have side-effects that I'm not willing to put up with, quite frankly. I still take some of them, like Pred, but to me, and many of others I've talked to about this condition, it's more about WHAT WORKS FOR YOU.... when that no longer works, then I'll try something else.
Really, George, it's more about BALANCE.
As someone who works in healthcare, I can tell you that in treating a patient, the patient first and foremost has to believe in the doctor and the therapy. A patient will do much better when treated by a physician that they can relate to, confide in, and find approachable. An patient who has received education about their ailment and treatment will be more compliant, be more apt to schedule follow-up appointments, and so on.
With a condition such as this, there is no way to guarantee treatment will work. Unfortunately, it's a condition that can go without a definative diagnosis for many years - it's often a "catch all" phrase that's used when someone has a constellation of symptoms. Hence, patients will try any and everything to bring relief - and it may seem outlandish to you, but if it works for the patient, then why not?
Personally, my opting for the alternative therapies come from all of the hours spend in physicians' offices, emergency rooms, getting lab work done, waiting for results, and just asking lots and lots of questions. So far, I haven't read anyone's post on here, who doesn't really talk about their dealings with this issue, who haven't mentioned how they've pursued this clinically.
The flip side of this, is that Arthritis treatment has been recently listed as one of the top 20 key initiatives that need to be changed about healthcare. The reason is that many insurance companies will not pay for long-term treatment (prescriptions) of this condition. Patients are having to pay for very costly medications, which cause many patients to be non-compliant in their treatment. They are turning to more alternative treatments because (a) they're more affordable and (b) they get some relief. It this sort of "insurance driven healthcare" dialemma that makes me hate the field I work in - we need serious reform in this country, but that's another thread isn't it?
Besides, if the placebo effect works, then why knock it? You could say the same thing about prayer, too, right? It's not proven, so don't you dare use it.
Peace.
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George Aar
O.K. did I CLAIM to be a [edited profane language] doctor?
Sorry, but you are right. I've lived my entire life without the slightest medical issues bothering me EVER.
You and a few of your friends are probably the only ones who've ever suffered any such problems.
And if you'd like to spend your life stroking a rabbit's foot or having your chakra adjusted, be my guest.
But Alternative Medicine that works soon becomes MAINSTEAM medicine. All one need do is perform the basic clinical trials, publish the results in a peer-reveiwed journal and before you know it, it will become accepted therapy. That is, if the results are postive.
Funny that so few of the alternative crowd bother with that regimen? Maybe it's because it's easier to sell snakeoil - and take advantage of the desperate - than it is to do real science?
Maybe?
Anyway, I WAS trying to be nice.
Best wishes to you Mr. Finch on your treatment, whatever it is.
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ChasUFarley
My comments in blue, bracketed, below:
O.K. did I CLAIM to be a [edited profane language] doctor?
[No, but you certainly posted like someone who was an authority on the subject, in my opinion. You make some strong statements and came across rather judgemental. This is my opinion. Period.]
Sorry, but you are right. I've lived my entire life without the slightest medical issues bothering me EVER.
You and a few of your friends are probably the only ones who've ever suffered any such problems.
And if you'd like to spend your life stroking a rabbit's foot or having your chakra adjusted, be my guest.
[Thank you for your unsolicited permission. Although I understand what you're trying to say, I think that if you look at some of the personal accounts here and what others have tried, then perhaps you can understand what we're saying. No one has talked about chakra, or anything of the like. Again, you're going to extremes.]
But Alternative Medicine that works soon becomes MAINSTEAM medicine. All one need do is perform the basic clinical trials, publish the results in a peer-reveiwed journal and before you know it, it will become accepted therapy. That is, if the results are postive.
[bINGO! Give that man a Baby Ruth! Did you read what I said about hospitals using alternative medicine? Yes, it's becoming more mainstream, as it's been proven. I don't think anyone here has mentioned anything really "out there" for treatment. So we agree here.]
Funny that so few of the alternative crowd bother with that regimen? Maybe it's because it's easier to sell snakeoil - and take advantage of the desperate - than it is to do real science?
[The problem with alternative medicine is organization - few companies or groups are able to get it together enough to get through all the red tape that's put in place by the FDA. Clinical trials cost big bucks. Seriously big bucks. If you want a real fun time, try writing for a grant sometime for something that's healthcare related - -I can assure you, it will make your annual tax preparation look like a walk in the park! Again, this is something that should fall into the categoy of how this country needs to change healthcare - if these remedies actually work and are less expensive, then why the heck aren't we getting them approved? It's because the insurance companies drive healthcare in this country. Sorry, but that's the bottom line.
Yes, there's some crud out there that has no business being called medicine. But I think it's poor logic to lump it all together to call it all 'quackery' or 'snake oil'. At this point in our society and healthcare structure alternative therapies have to be considered on a consumer level - what's safe? what's worth making available? what will do the least harm? If Joe Patient wants to take MSM, a supplement which has no known side-effects, and he thinks it works for him, then sobeit. How can you judge what one person or ten people or 100 people all say works or doesn't work for them.]
Maybe?
Anyway, I WAS trying to be nice.
Best wishes to you Mr. Finch on your treatment, whatever it is.
[And again, Peace.
My first post directed to you isn't a personal attack on you. I disagree with your post. It doesn't mean that I have a problem with y-o-u. As always, you are welcome to disagree with me - I'm sure you do, and that's fine. Personally, I enjoy a good debate, and if it's about healthcare - something near and dear to me - then all the better! I want to know what others think about it and improvements we need to make. It's a passion. ]
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George Aar
I think Mr. Carroll says it better than I can:
http://skepdic.com/althelth.html
BTW, just so you know MY bias, I spent about 20 YEARS going to chiropractors, massage therapists, and Osteopaths for treatment until FINALLY I couldn't move my hands anymore and was in so much pain that I couldn't sleep.
I went to one of those evil, knuckle-dragging, devil-possessed MDs and, lo and behold, after about 20 minutes of surgery, I felt better than I had in TWENTY YEARS. Unfortunately, due to the length of time I went untreated I did irreversible harm to the nerves in my arms. Consequently I have little sensation in my hands anymore, and tend to drop things more often than I used to.
I also watched my uncle slowly morph into an unrecognizable, twisted blob of humanity due to RA. He tried all the alternative stuff and those practitioners fed on him unmercifully. My sister is battling RA as well, and I'm starting to show symptoms myself. So I'm not a stranger to the ailment. I'm just not willing to pay somebody to perform pointless procedures on me in the expectation that "Well, it can't hurt!" Sorry, but it CAN, and DOES - everyday.
And no, the fact that I can have an opinion doesn't make me a doctor. The folks that seem to favor the altrenative regimen get a free pass from you on that count, though (it seems).
Edited by George AarLink to comment
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Sushi
I know George is a big boy and all, and doesn't need my defense. But you fired the first salvo there (at least on this thread) Chas, as in:
"Thanks for you input, Dr. Aar... whoops! You mean, you don't have M.D. after your name?
So sorry.
"
The only thing I read in his post was to be wary.
And just as an aside, I haven't noticed an MD after your name either, Chas.
So sorry
.
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Sweetpea
Medical doctors have developed their medical expertise due to trial and error over many years. Who can say that any try for treatment by some is wrong. The medical profession is not perfect, They have always tried to protect themselves from endorsing treatment that would cut into their profession and livelihood.
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allan w.
Crap Sushi...Georges facetious reply deseved Chas's response.
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shazdancer
Whoo, I step away from the keyboard for a day...
Geo, I have no problem being VERY skeptical of alternative therapies. I frequent a Lyme message board where a lot of strange alternative therapies are propounded (foot patches, ICHT, Rife, colloidal silver, frequent colonics, people who take dozens of pills a day, etc.), and I absolutely advocate for science-backed medicine. It's actually funny that I'm talking about alternative here.
However, there are times where a conservative use of alternative medicine is warranted, although if someone is seriously ill, HE SHOULD BE WORKING WITH A KNOWLEDGEABLE DOCTOR.
(Ow, that hurt my ears... :D )
I know of people for whom allopathic medicines didn't work. I know of some who don't tolerate the side effects of traditional medicines (they can be worse than the disease itself for some) and just seek enough symptom relief in the gentlest way they can think of to allow them to function. And the cost of traditional medicine sadly keeps some patients away.
Then there are some who just believe that "natural is better." Of course that's not always true. And we often have less certainty about the content of "natural supplements" than we do of synthetic ones.
And Chas, we both know that some natural herbs and alternative therapies can have side effects that are just as serious as those of allopathic medicine. So I will never advocate for all alternative treatments as safe, and I'm sure you wouldn't either.
Geo, some vitamins, supplements, and alternative products have been studied scientifically. But some products just don't get tested because their use isn't profitable enough to warrant the expense. Some of the biggest funders for longterm double-blind studies are the prescription drug companies.
And don't get me started on peer-review publishing! There are actually 2 standards of care in Lyme treatment, and the guidelines for both have been published in peer-review. Legally, that leaves the decision for how to treat up to the patient. Yet Lyme doctors' licenses are being threatened for their treatment of patients using the long-term antibiotic treatment protocol. A respected doctor in NC who treats HIV and Lyme will be involved in medical board hearings this week for exactly that.
There are two pretty badly-constructed published studies that researchers claim "proves" that long term antibiotic therapy does nothing for persistent Lyme disease. And the extrapolations from those studies -- that chronic Lyme doesn't even exist -- defy logic. A third study, by a doctor from Columbia who has published numerous times before, refutes the conclusions of the other 2 studies. The study that shows that longer-term antibiotic therapy can be effective in the treatment of persistent Lyme symptoms has been held up in the peer-review process for over a year now. Why? don't wanna pi** off a few good ol' boys?
So I am not a huge believer in the peer-review process as the perfect solution to getting to good science.
And while I'm on my "favorite" subject, read THIS, the most succinct thing I've ever seen (by my Lyme doc, no less! :D ) about the problems of accurate testing, diagnosis, and treatment of tick-borne disease.
If any of you have any inkling that you may have Lyme disease despite negative tests, you should read this article.
Regards,
Shaz
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shazdancer
Just adding to the above, that the doctor who wrote the article I linked to has also published extensively in peer-review, and I am sure can back up every fact he presents with solid research, as he usualy has a lengthy bibliography when he publishes.
Scout, I also thought I'd tell you that I tried SAM-E a couple of years ago when my Lyme arthritis was getting worse. It worked great for that, and for mood enhancement. No, not that kind of mood enhancement ;) , it just took the "feeling down" feeling away. But be warned: my first reaction from SAM-E was mildly manic, about 4 days into taking it, so I think anyone with bipolar should stay away from this one! The positive effect on joints took weeks to develop.
When I got worse even on the SAM-E, I discontinued and went back on antibiotics. I currently take only a multivitamin, Co-Q10, and lecithin. I work over 30 hours a week, mostly as a dance and gymnastics teacher.
But don't get between me and my hot baths!
Regards,
Shaz
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