a substance with no real medicinal value sold as a remedy for all diseases.
a product, policy, etc. of little real worth or value that is promoted as the solution to a problem.“the new medication was denounced as snake oil”
like this Chronic Illness seems hopeless at times. We ALL want to feel better and have a better quality of life, we want our ‘old lives’ back, the way we remember it… as everything being semi perfect. We want the magic pill, the healing elixir, the curative therapy, the thing we can do to be back to our old normal. Trouble is people and companies want us to believe there may be an easy cure and we don’t have to take Western Traditional medicine that may help while it may also damage other parts of our body.
Recently on Social Media groups there seems to be a influx on posting about ‘cures’. This scares the crap out of me… I worry that someone may totally stop following doctor’s monitoring and instead go for one of these cures. CSS/EGPA is a Chronic illness. A person does not become cured. Instead we have remission or quiet periods, times when the disease is not actively trying to kill us. For some it may never be quiet, for others it may stay quiet for months, years or even decades.
That being said I am a believer in alternative and integrative medicine to alleviate some of the side effects of the drugs we take.
I have tried alternative medicine. Even some weird shit… I know where the hope for the magical cure comes from. I also did cupping ( it did help with my cough at the beginning of my CSS journey) and Chinese herbal meds ( I had difficulty with the taste and tended to puke them up ). I have done acupuncture (really helped me with Cytoxan nausea) and massage therapy.
The strangest thing I ever did was Chelation Therapy. This was just a month prior to my official CSS diagnosis. I was told by an alternative medicine doctor, after he tested my spit and hair, that my body was filled with toxins and needed to be cleansed of them At that point I was so sick I would have believed anything. I went to his office twice a week and got Chelation Therapy via IV and a large IV bag of vitamins (aka bannana bag). Yes, It made me feel better but later I realized it was the bag of vitamins that was making me feel somewhat better. In the middle of one treatment I had a Major asthma attack, it scared me and the answer according to this doctor was that I need more frequent treatments at $300 a treatment. Chelation Therapy actually did help me…. How?
It made me so sick, that the CSS came out in full force and became easier to diagnose. My Vasculitic rash lit up like a Christmas tree and my breathing was at an all time low. So, did Chelation cure me, as the doctor swore it would… NO. Did it help me? Yes, in the fact that my CSS diagnosis came a month later and I was put on high dose pred and Cytoxan. Did it make it worse? Absolutely! Could it have killed me if I only relied on it? Yes, but luckily I was being monitored also by a wonderful doctor who was busy running all sorts of tests trying to find the answer.
I am not saying Alternative medicine will make you sicker, what I’m saying is be careful. I love the concept of Integrative medicine. Where you get the best of both worlds, Alternative and Traditional medicine. I believe both can work in harmony within our bodies. I need my Traditional medicine of monthly monitoring of my blood to see how active my disease is but I also like Alternative medicine to help with some of the side effects of the Traditional meds I have to take to stay alive.
I currently have a shelf full of vitamins. I take B-12 for energy, D because I was told mine was a little low, multi-vitamins because they must help somehow … d-mannose because a doctor asked me to try it for my frequent UTIs. Corn silk pills, also UTI related and a new combo of some supplements which may help with energy but seem to be an epic fail for me (but I am still testing it). I have tried California legal CBD oil and many other ointments and alternatives for nerve pain. I am very careful as to where I obtain my vitamins from to make sure they are pure.
I am a firm believer in… If some alternative makes you feel better, and is doing no harm to your body then go for it. We must remember that just because it makes you feel better does not mean it will work for everyone and the danger of telling someone that this ‘cured’ you of something. Your reader may go out and stop all their meds and try the alternative instead only to have their vasculitis doing silent damage to their organs. I am scared that someone may stop all meds and medical monitoring based upon a FaceBook post and instead, drink the tea, use the oil, swallow the herbs, cleanse their colons, starve their body of nutrients, or rely upon a healing circle and be silently killing themselves.
I think we owe it to each other in our chronic illness, Vasculitis community to share information but also make sure you are clear that the alternatives are not a cure. This is no current cure for CSS and Vascultis. We need to be clear on how it may have helped you with XX symptoms but you are also taking…xx. or were taking…xx with it. We need to share how much it costs… most alternative therapies are not covered by insurance and vitamins alone could set you back hundreds of dollars a month. We need to share how long you need to be on that alternative, there is a mistaken belief that some alternatives are a quick fix, many are life long. We need to stress the importance of monitoring, both laboratory and doctor. CSS has killed one too many people that I have met online and many times it’s because a person was not being monitored closely enough and the disease flared.
So, in closing beware of Snake Oil — IF something seems too good to be true, it probably is false. Now, I must go back online and send $$ to that Nigerian Prince who promised me millions in return.