My rheumatologist said yes!

[Jeni]

Hi mj,

Thanks for sharing your husband's dosage of mino. I tried 100mg 3x a week of Teva mino and it killed my stomach! I also got a really nasty yeast infection to boot! The weird thing is that I felt much better arthritis wise, while on the mino even though my stomach was sick-I had constant feelings of indigestion.

Now, I am going to try 50 mg of non-generic mino 1-2x a week. (Thanks to Lynnie and Maz for the Canadian link for this!) I am pretty much on my own here figuring out what dose and all to take, since my family doctor doesn't know too much about mino therapy and RA. I am so glad that she is willing to help me out here with trying this therapy! My Rheumie was actually kind of hostile about it originally, but her letter to my family doctor was sooooo friendly! I wish doctors wouldn't abuse their power and play games with us! I think that if they were in our “shoes” they would understand our desperate need to get well and not to have to subject our bodies to such dubious drugs. Like I said in my first post on this board, I know that methotrexate gave my mom the cancer that eventually killed her. It was a very long year and a half caring for her and watching her die.

I also noticed that your husband is gluten free. I have found that eliminating the gluten as well as dairy has helped me quite a bit. Just in case anyone is interested, I get a magazine called “Living Without” that is for people with gluten, dairy, and other food issues. It is wonderful! The magazine is definitely a proponent of avoiding gluten and dairy for RA!

Thanks!

Jeni

[Jeni]

Hi again Lynnie,

I forgot to say that I think that maybe I can get my family doc to talk to the Doc S that you mentioned. That may be a really good option for me….

I did originally receive the list of two docs here in Washington state, but one is pretty far away and I got a bad feeling from the one that is near me. I called him and his nurse was not very friendly. Also, my family doc knows about him and insinuated that he was not great. She just smiled at me! I really trust her, so I think that I will just work with her for now.

Thanks!

Jeni

[lynnie_sydney]

That's great Jeni. Let us know how you go. Lynnie

BTW I am gluten and dairy-free also. Aditionally, sulphite-free and on low salicylates. I believe this has made a big difference to me.

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)

[Jeni]

I'll have to check into sulphites and salicylates. I know that my sister is allergic to sulphites! 

Thanks!

Jeni
 

[lynnie_sydney]

Here are a couple of links to Fact Sheets that I've posted before. These come from a very well respected allergist who works out of one of our major teaching hospitals. Lynnie 

http://www.fedupwithfoodadditives.info/factsheets/Factsulphites.htm (BTW the sulphites in US foods follows the Australian list)

http://www.fedupwithfoodadditives.info/factsheets/Factsalicylates2.htm

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)

[Jeni]

Thanks Lynnie!

I'll check out the sites you posted!

I picked up my new Rx today for mino! Yeah! I'm going to fax it over to the Canadian company that you guys mentioned. I checked at Walgreen's today, and it would have cost me almost $500.00 for 100, 50 mg tablets!!! So, I will be sending my order to Canada tomorrow!

Oh, my doctor's nurse practitioner wrote the Rx for me, and she was really interested! I have a feeling that she will look up The RB Foundation website! She was very positive and supportive too! I am so happy that their office is just 5 minutes from me!

Anyway, I was reading my book called Digestive Wellness again (Elizabeth Lipski) because I am very certain that I have stomach issues going on here too. Right before I developed RA, I had a bad couple of years of dealing with gastritis. I am pretty sure that it was all the coffee I was drinking in college that did me in!  Lynnie's post mentions healing her stomach, so I got my book out and started reading again about leaky gut and candida. I will say that my stomach has been so much better after doubling my probiotic dosage. I have been using “Nature's Way Lactobacillus and Bifidus once daily.” I don't feel bloated anymore, and when I indulge in wheat or dairy, I don't get as sick as before. I still try to limit wheat and dairy, because there is a noticeable difference when I eat them more than once every two to three weeks or so. Dairy is the worst for me. I get a flare up usually in my right shoulder, for some weird reason, within less than 24 hours.

Oh, another interesting point, I don't know if anyone else has had this happen, but I developed RA within 1 1/2 years after having my first baby. I think that I've read that giving birth is associated with developing RA. Just another piece of data in this puzzle!

Thanks!

Jeni

[Parisa]

Jeni,

If you haven't already, look into going gluten free to help heal your gut. 

[Jeni]

Thanks Parisa!

I have actually been gf for about 5 years now. I do cheat occasionally and then I pay for it if I eat too much! I definitely have noticed that doubling my probiotics has eliminated 90% of the bloating that I get when I eat wheat or dairy.  However, I did eat a cheeseburger last week and I paid for it with an extremely sore shoulder!

The last time I got tested for celiac, I tested borderline. My family doc said that I really should have been eating bread every day for 3 weeks before the test, which I definitely didn't. I think I ate maybe a sandwich or two.

The other thing that I found out was that I have a lot of delayed onset food allergies. Apparently these are IgG mediated allergies which can take up to 48 hours to show up. I was tested about 6-7 years ago and that is how I found out about the gluten and dairy. I actually am allergic to like 20+ foods. To me, this is proof of my issue with leaky gut. When I eat too many of the foods on my forbidden list, I will definitely have a flare up of my RA.

Thanks again,

Jeni

[katieb]

Hi Jeni,

I am really interested in your story as I am suffering a lot with bloating at the moment and having great difficulty in tracking down the culprit foods. I think I may have a delayed reaction like you, so it makes them more difficult to track down, especially when you are low on willpower like me !

Please could you tell me what sort of food allergy test you had. I want to get one, but have heard stories about some of them not being reliable. Is there a particular type of test which can be trusted eg was it a blood test ?

Many thanks !

Katie 🙂

[betsyr]

Jeni,

You're so lucky your rheumy said yes!  Mine just gave me an adamant “NO WAY”. She even said she would not see me again if I found someone who would prescribe A/P therapy and then pushed me out the door!  Her only options were Metx or Imuran, I said no to both! Up until now I was very pleased with her treatment and thoroughness.  It really suprised me how upset she got when I asked if she would consider A/P! Now I'm making phone calls asking if the doctor uses antibiotics and have been told “no” by each one,  even 4 doctors who are on the RB list told me either they do not use or are “no longer” using A/P.

I'm not going to give up!  I think traveling is better than just giving in and taking something with so many know side effects like Methatrexate.

Congratulations on your treatment progress!  I hope you continue to improve and have success with your treatment!

betsyr / Polymiositis, Sjogren's, Reynauds

 

[Maz]

[user=1767]betsyr[/user] wrote:

I'm not going to give up!  I think traveling is better than just giving in and taking something with so many know side effects like Methatrexate.

Betsy, good on you, girl, for not giving up! Just a suggestion, but you could try calling around to a few DOs (Doctors of Osteopathy). These docs seem to be a little more open to AP in general. Also, you can check on the http://www.ACAM.org  website and see if any docs are listed in your area that you could approach about AP. Here is the direct link to their online automated physician locator:

http://www.acamnet.org/site/c.ltJWJ4MPIwE/b.5457441/k.5E5F/Welcome_to_PhysicianLink__18005323688_/apps/kb/cs/contactsearch.asp

Let us know how you get on and if you need us to send you any further physician lists, in case you find you need to travel.

Peace, Maz

PS Did you try the lady Dr T in Parma, Ohio?

[Jeni]

Hi Katie!

You are definitely right that it is confusing and hard to figure out food allergies when they are of the delayed onset type. I had my test at the naturopath about 6 years ago. It was a blood test and it was sent to Immuno Laboratories in Florida. Their phone number is  1(800) 231-9197. I'm not sure if the number is still good, but I think that the website is.

Another company to try might be Alcat Worldwide 1(800) US-Alcat (872-5228). I think that this is basically the same type of test and it says worldwide! Their website is http://www.ALCAT.com. Hopefully they can help you since you're in the UK. I keep seeing their ad in the food allergy magazine that I get called Living Without. You should google the magazine title and check out their website. Maybe you have celiac disease? I know that bloating and arthritis type symptoms are associated with celiac.

Anyway, good luck! I hope that those links can help you out!

Take care!

Jeni

[Jeni]

Hi betsyr,

I am so sorry! I know how infuriating it can be when docs just ignore you! They need to be our partners and advocates, not our adversaries! I have gone through several rheumies in the last 20 years because they wouldn't work with me.

Just a thought here, why don't you try calling some naturopaths or homeopaths in your area to see if they know a doctor that is more flexible in their approach to treating diseases?

If I can think of anything else, I will post you a note!

Don't lose hope! There is a way and you will find it.

Take care,

Jeni

[katieb]

Hi Jeni,

Many thanks for that info and links! I think I can get a blood test food allergy test at the Breakspear clinic here in the UK, so that's the one I'll go for. I did have a celiac test a couple of years ago, as my grandmother had that disease and I did wonder about it, but it came back negative. But I may well have another test for that too as I seem to have the symptoms !

I hope the minocin will work wonders for you ! If you look at my personal history on

 http://www.rbfbb.org/view_topic.php?id=1975&forum_id=3

(haven't updated it for ages now – need to do that !) you'll see that I started out on 50mg MWF (generic minocycline) because of a lot of herxing. But it only took 5 months to start to work, and after about 9 months my ESR & CRP were normal. So best of luck to you with that !

Katie 🙂

Guess what – I just went on the Breakspear website and this is what it says :
'To determine food sensitivities, as opposed to classic food allergies, the blood test called ALCAT has been shown effective. The ALCAT system was developed by AMTL Corp (American Medical Testing Laboratories). It is a patented blood test that objectively measures the blood cells? reactions to a foreign substance under conditions designed to imitate what happens when the food is consumed.'

Good news ! Thanks again ! K

[Jeni]

Good luck Katie!

Let me know how it goes!

I am going to check out your personal history.  Keep your fingers crossed that the mino works as well for me! I am waiting for my shipment from Canada.

Take care!

Jeni

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