Is it realistic to only be on antibiotics?

[Rockin Annie]

[user=938]etheredgec[/user] wrote:

Hi RockinAnnie,

I'm new to everything – using antibiotics for my RA, using this bulletin board – everything, and feeling quite overwhelmed by it all. 

My rheumatologist has had me on Prednisone and Methotrexate.  I told him I wanted off the drugs asap and, to his credit, he has told me to wean off Pred, which I've done, but increased the Methotrexate.  I want to start of AP, but need to find a doctor who will administer it.  I live in Coffs Harbour, NSW.  I want to find out if I need to get off the Methotrexate before beginning AP.  Any ideas?

Hi etheredgec,

Glad you found us, It took me years to find this board, these people are so unreal with their knowledge and the amount of help I recieve and still receive is great.

I have been on many conventional meds and was ready to give up when someone directed me to here. I had my 1st appontment with AP doc end of Oct, he said to keep on 150mgs MWF and go off Mtx cold turkey but stay on Prednisone. I was a little worried about going off Mtx so posted my fears on this board and I got advice from someone that has been through the same. So now I have weaned down to 5 mg Mtx and will start weaning off pred after I fly to Melb.

Like you I wanted off the meds ASAP but I think you have to way everything up, like how bad you are, I do know that while on Mtx you will not herx as bad, and yes you can start Ap while taking Mtx.

After making my mind up to go on AP, I just went to my Rheumy and told him I wanted a script for Minomycin, he agreed but wanted me to take it everyday, but after reading everyting I could on Ap I decided to pulse dose MWF and start low. I do feel much better than I did a few months back so something is working.

I am not getting any help from my Gp or Rheumy, so was going blind for a while, there is so much info on the educational site when you log onto this board, have you been there yet?.

Let me know if I can help with anything else I probably haven't explained myself very clearly as I have my 2 year old grandson running around and wants to type as well, so I have probably missed and doybled up on things.

Good luck…Annie

P.S. nice to have someone so close, but no so nice for you to have to come to this board.

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[lynnie_sydney]

Hi etheredgec and welcome to the Board! If you send me a Private Message with your email address, I will forward you a list of AP docs in Australia. Just click on messages right next to login/logout above right. Dont be overwhelmed, best to start taking things in slowly. There are many people who've travelled the road before you and know how confusing things tend to be right at the start and there are lots of people on the Board always willing to help, support and share their own experiences. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[etheredgec]

Thanks Lynnie,

I have already received the list of doctors.  There are not many in this area (Northern NSW) who have experience with RA, but if my GP doesn't come on-board with me, I will travel to wherever I have to go. 

Thanks for your encouragement.

Carolyn

[Maz]

[user=938]etheredgec[/user] wrote:

I want to start of AP, but need to find a doctor who will administer it.  I live in Coffs Harbour, NSW.  I want to find out if I need to get off the Methotrexate before beginning AP.  Any ideas?

 

Hi Etheredgec,

Lynnie, our Aussie volunteer should be able to point you in the right direction with AP docs in NSW. In the meantime, I'll send you a full listing of docs in your state in a private message (or what we call a “PM” around here). To retrieve it, just go to the top of this page and click on “1 new message waiting…” beside where it says, “Logged in as…” You need to be logged in to do this.

Probably not a good idea to come off methotrexate before beginning AP. The reason for this is that it's very common to experience herxheimer reactions in the early months of AP, so you don't want to add to this by suffering from rebound from coming off the mtx, too. It's usually a good idea to remain where you are with the traditional meds until you start to see an improvement with the AP and herxing isn't so pronounced. Then, very slowly wean from the mtx.  A good AP doc should be able to help you with this whole process. 😀

Welcome to the group!

Peace, Maz

[Maz]

PS…ooops, just saw Lynnie already replied…sorry Lynnie…I never know with the time difference. 😉

Peace, Maz

[Time_of_my_Life]

Hello T-Bird~

 I went off both Methatrexate and Plaquenil 3 weeks before starting AP.  I had absolutely no problems but that was just my experience.  I immediately felt better once I stopped them.  The brain fog was gone!  I'm sure due to Methatrexate.  8 months later, my AP Doc says that since I had no reaction from going off those meds cold turkey that they were not working for me to begin with.  I am so glad I didn't stay on them any longer!  I realize we are all different so this may not be the case for you.  You have to do what you feel is right for your situation.  You have definitely found the right site!!! 

Good Luck on your Road Back! 🙂

Lori

[Jo]

[A Friend]

[user=465]Jo[/user] wrote:

[user=938]etheredgec[/user] wrote:

Hi RockinAnnie,

I'm new to everything – using antibiotics for my RA, using this bulletin board – everything, and feeling quite overwhelmed by it all. 

My rheumatologist has had me on Prednisone and Methotrexate.  I told him I wanted off the drugs asap and, to his credit, he has told me to wean off Pred, which I've done, but increased the Methotrexate.  I want to start of AP, but need to find a doctor who will administer it.  I live in Coffs Harbour, NSW.  I want to find out if I need to get off the Methotrexate before beginning AP.  Any ideas?

You do not need to stop your current medications to start the AP. However, since your current medications are immune suppressants, the AP will not work as well as it does for people with working immune systems.

We use MSM to treat the inflammation and keep the immune system strong and to help the AP work to it's best advantage.

You can check out the discussions on MSM using the search box at the top of the page.

Warning – MSM is a detox and has a very strong chelating effect – start low and work up slow to prevent detox symptoms caused by the clearing of toxic metals in your body. Once you get to your theraputic level and the inflammation totally disappears, I think you will agree it is the perfect complement to the AP.

Jo,

I've followed your posts for some time about your husband's successful use of this product.  It had been a long time since I'd read the information about it, so did a search.  At the same time, I was searching for a supplement of some kind that could be compatibly taken with it that would “trap” any detoxed heavy metals that may be leached, so they could be excreted from the body, and not be reabsorbed back into the body from the colon (which the body does with fat-soluble-toxins).  I'm very impressed with the MSM in this article, and will re-read some old documents about detoxing heavy metals and see what was suggested to trap metals that are detoxed.  

It did caution about this:   

[align=justify][font=”Times New Roman,Times”]For those who do not want to take MSM as a supplement, food sources of sulfur are as follows: sunflower seeds, garlic, lentils, soybeans, and yogurt. Persons with kidney problems or recurrent kidney stones may not want to take MSM. Certain renal tubular defects can make a person susceptible to recurrent kidney stones (2). Other kidney defects include errors of metabolism in which processing of sulfur amino acids is altered (2). Such persons may wish to avoid MSM. [/font][/align]
http://www.all-natural.com/msm.html

Natural Health and Longevity Resource Center
Sulfur (MSM)
A Basic Essential Nutrient Needed Now, More than Ever Before
 
Thanks for sharing your husband's experience.  It is impressive, and MSM sounds very promising.   

AF

[orchid]

[user=28]A Friend[/user] wrote:

(It was my belief that several years before I was diagnosed with RA or MCTD, that two years of constant medication

[A Friend]

[user=515]orchid[/user] wrote:

[user=28]A Friend[/user] wrote:

(It was my belief that several years before I was diagnosed with RA or MCTD, that two years of constant medication had actually caused much harm, and I believe perhaps even caused me to develop the rheumatic diagnoses because of the resulting gastro problems.)

Good luck to you,

AF

AF – what medications were you on prior to RA or connective tissue disorder diagnosis? I'm assuming you were on the meds for the inital jaw infection? Thanks!

Orchid,

My own case, from the beginning, included two years of treatment for recurring sudden onsets of extreme flu-like symptoms (triggered by a simmering infection in a jaw, which was [erroneously] dx'd as TMJ varied often each time this occurred.  It happened over two years with 15 Rx'es for 10-days of abx [this was about 1992, Doxy was among these, but can't remember which other abx were prescribed; they helped but temporarily, and it was “no probiotics” that was the culprit] — which greatly helped but briefly [for about 2 months at a time, then I was ill again], but this was not the way these abx should have been prescribed, I later learned.  Nor did the well-respected internist have any knowledge of the need for probiotics.  He just kept on prescribing the abx ALONE, as he had previously done.  My gut and body [it turned out, unknown to me, I never had a visible yeast infection] just got more and more overgrown with molds, fungus, candida, until I just knew from my extreme chronic fatigue that I wasn't going to make it. 

My internal wisdom told me I had to find another way.  Fortunately, there was a mother of a young daughter whom she had helped recover, and she had just put in a health store.  She rescued me by asking me to read Dr. Wm Crook's book, “Chronic Fatigue and the Yeast Connection.”  All of the information fit me like a glove.  Starting on Dr. Crook's program saved me…. but it takes a long time to correct and overcome such damage [systemic fungal overgrowth and leaky gut].  All of us patients are different. 

To shorten this response, from my own experience, I was thoroughly educated at that time with a healthy respect for yeast/fungal overgrowth by the time I had a (silent) mold exposure in an apartment while building a home.  It knocked me on my ear after living there several months, and thought I was having a heart attack.  I was diagnosed with a rheumatic illness, labs pointed to RA.  Found Dr. Brown's book the same day I got my RA diagnosis.  Knew beyond a doubt that I needed Dr. Brown's type protocols (instead of the usual heavier drugs), and a few months later I was in Ida Grove and received the IVs and RX'es for pulsed, long-term, low-dose Minocin.  Four months later, I knew I had again turned a corner. 

Orchid, the above was copied, then edited a bit, from this prior post by me on the board:


 
Hope I've answered your question.   [/size]
AF

[orchid]

Thanks, A Friend –

That helped explain it a lot! It's very interesting to read everyone's stories because it helps to diagnosis your own.

🙂 Thanks again – and glad you “turned a corner!”

[lajones2]

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

Hi tbird,
I have been on minocycline for 10 months now. During the first month I was also taking prednisone and nsaid. I no longer take the prednisone, and find myself taking less and less of the nsaid. It has been a slow progress, but I'm definately making progress !

Methotrexate is toxic swill and should not be given to humans. I worked for a biotech company that did research with it in the 80's. I quit the job because I could not justify all the animal suffering in the “name of scientific research”. It caused tumors and horrible unspeakable things to the animals.

When my rheumatologist told me that methotrexate was my first option, I just about fell out of my chair with disgust. I could not believe they wanted to poison me in order get rid of my illness.

I'm glad that I found AP and stuck to my guns about getting the prescription for it.
Starla

How much prednisone were you on and how did you wean off without major pain?

 

LJ

[stwig]

Hi LJ,
I took 10 mg each day for about a month (maybe 6 weeks at the most). My rheumatologist wanted me to take 15 mg but I did not want to go that high. After those first few weeks at 10 mg, I went down to 5 mg, and stayed there for about 2 months.

After that I decided that I wanted to get off of it totally, so I ramped down. I went down to 2.5 mg and stayed there for about 3 weeks, then went to 1.25 mg for more 2 weeks.

I did not suffer from any of the horrible issues that can be associated with prednisone withdrawl. Had some of my inflammation issues get worse, but just rode it out until the mino was doing its job.

Starla

[Jo]

[Author]

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