dosing

[Maz]

[user=75]stwig[/user] wrote:

Sorry about the angry rant, I am just frustrated by this.
-S

Hi Stwig…your anger is understandable and it's an emotion many of us have experienced as a result of similar scenarios to your rheumy's reaction. Ellen is right…just use your anger to empower yourself to find an AP doc who will prescribe mino and act as your health advocate. Then, keep all records of your improving bloodwork and, once you're well on your way to recovery, you can send copies to your old rheumy with a note saying how improved you are! I plan on doing this with my own pcp who refused me antibiotics when my labwork returned equivocal for Lyme, even though I had a fully visible EM rash, stiff neck, flu-like symptoms, fever…all clinical signs of Lyme. Had I been treated promptly, I may never have progressed to severe RA. This angers me, too, as you might imagine, but I've decided to channel this anger into educating my pcp in retrospect. 😉

Peace, Maz

[Jennhere]

[user=66]Ellen RA-AP[/user] wrote:

Anyone know anything about elderberry?  My pediatrician showed me a box for a supplement made from elderberry that is antiviral…he swears by it!!!

Have you spoken with your PCP about minocin?

Oh, Ellen- I swear by Sambucol.  It pushed my health straight into recovery.  It took a couple of months, but things I didn't even know were an issue… energy level, clarity… all came back together.  I love Sambucol. (elderberry extract).

Jenn

Stwig- But you're here now!!  You'll get better despite the med communities lack of insight into these diseases.  Everyone here is “showing them!”. :roll-laugh:

[Bill]

Jenn

 I also love sambucol as it is the best for a flu or virus.

 Im interested in how you incoporated it into your ap protocol. Why did you decide to try it ? How did you dose it ? Your doing very well so I do wonder if it was a contributor to your recovery. Please tell me more!

Thanks,

Bill

[Jennhere]

[user=15]Bill[/user] wrote:

Jenn

 I also love sambucol as it is the best for a flu or virus.

 Im interested in how you incoporated it into your ap protocol. Why did you decide to try it ? How did you dose it ? Your doing very well so I do wonder if it was a contributor to your recovery. Please tell me more!

Thanks,

Bill

Hi Bill,

I got really into Sambucol while I was … Ok, this will sound like the Twilight Zone, perhaps, but I was researching the avian flu and saw studies done on various flus using Sambucol.  So, I shared the info with my best friend… cuz we were in the process of stocking our “bird flu pantries”… (is that a little Twilighty for you?:blush:)… ANYHOW, all this research done on Sambucol and it's effectiveness on viruses got me thinking I should maybe give it a try to see if it could help kill whatever ails me- or at least maybe it could help assist my mino doses to do their job.

There's tons of great info on the web about the studies done with Sambucol.  The fact that it boosts the immune system, kills viruses and is all natural are the reasons I decided to give it a try.  I'm very glad I did. 

I take it at the daily dose of 2tsps a day.  There were a couple times when I felt like I was coming down with something this winter- I upped the dose and got better in at the speed of light.  My kids take it daily, as well. 

I thought I felt great.  But after about two months of Sambucol, I was standing in my kitchen one day and it hit me that I felt fantastic.  I mean, high energy, alert… A sense of well-being I haven't felt in a few years.  I was feeling really good on mino, but I think Sambucol just took me to a new level.  It didn't happen overnight.  And even when my joints ache a bit now, I still feel really ..really healthy these days.  Like, I'm rock solid deep down healthier than I've been in a loooong while.

Jenn

[stwig]

Good afternoon everyone,
I want to thank you all very much for your kind responses and messages. It is comforting to feel like I am not in this alone, and that there are other people out there who don't want to give in to the traditional toxic meds.

I was able to get my rheumatologist on the phone late yesterday, and she said that she does not usually prescribe mino, as she feels that it has no benefits above placebo. I said that I appreciate her opinion, but that I plan to decide that for myself. At that point she then stated that she would go ahead and prescribe it for me. I think she knew that I was determined, and would go elsewhere.

I still plan to see a doctor here in San Diego who is familiar with the mino treatment, so they can help me through the process. But at least in the mean time, until I can get in to see him, I can get started. I feel like there is no time to waste, as my hands get stiffer each week, it is harder to drive to work each week, and I need to start the healing process now.

One of you mentioned food changes. I have already given up gluten, lectins, soy, most dairy, sugar, beef or any preservatives. We only eat organic. The good side to that is the fact that I've lost 30 pounds, lowered my blood pressure significantly, and gotten rid of my migraine headaches. Unfortunately the food changes did not cure my RA. Still, these have been positive changes that I plan to keep in place.

Thanks again for your support and advice.
Starla

[SusanSD]

HI Starla,

      Good for you for being assertive to get a mino prescription from your doctor. I did too from my non-believing rheumatologist. With prescription in hand, I decided to get off all other meds like plaquenil and prednisone, and then slowly start the minocin. I started with every other day. By that time, I had an appt. with an AP doc and he said he'd take it every day (for scleroderma). That was 16 months ago.

      I'm doing better and even my non-believing doc has to admit it. At my last appt. he acknowledged that maybe the minocin is reducing my fibrosis, paused, and then added … there are a few studies out there. It took all my strength to not yell at his back “BUT IT WAS MY IDEA”!

Hey Jenn,

     Where do you get your Sambucol? Is it at health food stores or local grocery stores?

[Bill]

Hi Jenn,

  Thanks for the reply and the laugh. Very amusing post. Twighlight zone ?? Twighlighty ??  Heck I'm thinking about buying a ring !! 😯

Seriously though that is my kind of girl , well prepared and very wise. Actually I think it is excellent that you were thinking that far ahead. And you chose an excellent product that works well. And ceretainly a flu pandemic avian or not seems to be a possibility these days. Plus it can always be used for family colds or flu.

 Twighlighty ?? Your talking to a guy who has had a couple of bottles of mino in the safe ( yes the pellited kind) since several months after 911 ( well before i think I even heard of RA) when I heard it was effective against anthrax. I keep it right next to the potassium iodide.  :sick: Certainly hope I never neeed that! Now that is twighlighty !!

 But I do admire your being prepared for your family. Because when we know we need it, it will be too late.

 Thanks for the info. on the sambucol it is a highly effective product. And it really makes me want to try adding it to my regime as well. It quite possibly could be a very helpful addition. Perhaps some of these RA bugs are a bit virus like or perhaps it will just enhance the immune system further. But I could believe it may help. It certainly seemed to be helpful to you.

Im aware of how it strips a virus of its ability to “attach” to other cells but Id love to read a study on it's general immune system enhancing abilities if you would be kind enough to direct me to one.

Anyways, thanks for the amusing post and keep  thinking outside of the box !!

Be well, Jenn

Bill

[Ellen RA-AP]

My pediatrician just told me that it originally was only available at WF, but now they carry it at Rite Aid, and I saw it at CVS, for 12.99.  He also said that you can order it online if you want a larger bottle.  He swears by it.

 

Now that I know someone with RA loves it, time to have my own bottle!!

[Jo]

[user=66]Ellen RA-AP[/user] wrote:

Thanks for your reply!  I grew up in Cheshire, but now we live in Franklin MA and I see Dr. T.  I guess I think it is suspicious that my friend and I both have similar diseases because I believe that my very first symptoms occured when he and I were a couple.  I had a very strange virus, high fever and rash, and then an allergic reaction to Bactrim.  I was tested for everything including Lyme and the doctor concluded that I have an overactive immune system.  After that I developed a nodule on my right wrist and went nearly illness free for several years until the onset of my RA.  He is currently taking Humira or Enbrel and mtx, but I am not sure if he has been tested for Lymes.  I will ask.

 

Ellen

Mr Perfect also grew up in Cheshire, then recently moved from MA.

I'm sure he'd love to compare notes with you. 

[Author]

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