New to all this

[orchid]

I had a whiplash injury in 2007 that sent my body into a tailspin. I had a lot of weird neurological stuff going on, my anxiety went high – it was a very scary time for me. During that time I had shooting joint pains from time to time — they would move around my body, but not stay for long.

More recently (June 2008) I've been experiencing joint pains, normally during the time before my period. I've had this off and on this past spring. It's not debilitating at all — and the joint pains don't keep me up at night or anything but I do notice my wrists will hurt at times or my ankles or my knees or elbows. My fingers, especially my pointer fingers (the knuckles) will look kind of red and feel stiff at times. But, I'm always using those fingers to rub my neck so I always thought it was because of that!

Prior to all this (4 years ago), I was diagnosed with hypothryoidism but never had joint pain even though I had other symptoms at that time. I'm currently on a detox diet (need to do better on it!) per the instructions of a natural health doctor and taking ultrainflamx and some gut vitamins to clear my system.

I have an appt scheduled in July with a good rheumatologist in my area — who works with a lot of fibro patients as well and will prescribe minocin and antibiotic treatments – unlike a lot of the old school rhuematologists I've heard about.

My dad has RA (he is 71) and started to get at age 35. I'm only 30. Any advice? He didn't treat his RA right away and then found a more old school doctor who put him on methotrexate and injections. He's only recently been looking more at his diet, drinking more water and exercise, etc. and feeling better. His knee is pretty bad, along with his hands and wrists.

A few months ago, I noticed this weird callous on my fingers – only the palm side of my middle fingers. Then I looked closer and it looked like little warts, too, but not really? I went to a dermatologist who said it looked like eczema and gave me a cream to put on it. It isn't gone yet, and isn't even that noticeable, except to me — and I haven't used the cream much because you need to leave it on and not touch anything – hard to do when I'm busy all day long — I don't want to get it in my eye or on something! So…I've never had this before and wonder if I DO have some sort of infection in my system, since my immune system was so low for so long (after the whiplash). Just thought I'd add that…because it could have something to do with all this.

I know someone who is in her 40's and was in a wheelchair for awhile because of her RA, took the minocin which didn't work for her and is finally on remicaid or something like that which seems to be helping. This scares me and I want to follow the right path. Can antibiotic treatment work for everyone? It seems like it didn't work for this friend of my sister's. If I do have RA, I'm in the beginning stages and I can function pretty well still but I don't want this to progress. Anything I can do to treat this early with good results. I have a lot of hope!! Thanks for any help or advice.

EDIT: I should add that I'm a vegetarian and have been for 12 years. I don't drink alcohol and I'm normal weight. I think a lot of this has to do with stress this past year. My bilirubin (liver not detoxing properly) levels are very high and it seems genetic. Not sure if that has anything to do with this, but since diet/stress seem to have a lot to do with RA for some people, thought I would mention it. Wondering if milk thistle would help me?

[Maz]

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

I have an appt scheduled in July with a good rheumatologist in my area — who works with a lot of fibro patients as well and will prescribe minocin and antibiotic treatments – unlike a lot of the old school rhuematologists I've heard about.

I know someone who is in her 40's and was in a wheelchair for awhile because of her RA, took the minocin which didn't work for her and is finally on remicaid or something like that which seems to be helping. This scares me and I want to follow the right path. Can antibiotic treatment work for everyone? It seems like it didn't work for this friend of my sister's. If I do have RA, I'm in the beginning stages and I can function pretty well still but I don't want this to progress. Anything I can do to treat this early with good results. I have a lot of hope!!

My bilirubin (liver not detoxing properly) levels are very high and it seems genetic. Not sure if that has anything to do with this, but since diet/stress seem to have a lot to do with RA for some people, thought I would mention it. Wondering if milk thistle would help me?

 

Hi Orchid,

Welcome to the RBF BB! It sounds like you've found antibiotic therapy nice and early, so you have a very good chance of being successful with this protocol. As you already have an appt set up to get started, the best thing you can do now is to get a copy of “The New Arthritis Breakthrough,” by Henry Scammell, which includes Dr Brown's book, “The Road Back.” You can order it easily through Amazon and some libraries may carry copies or get you one. This book will tell you everything you need to know about AP (antibiotic protocol), the history behind it, the studies and clinical trials that back it, Dr Brown's philosophies on pulse dosing as opposed to daily dosing, the use of IV Clindamycin to get a kickstart, patient stories, a chapter on Dr S who practices out of Ida Grove, Iowa, who trained under Dr Brown and to whom many patients still travel to get started and receive a week or so of IVs, patient stories, etc, etc. When I was first diagnosed with RA, this book became my hope, my reference book – a virtual gold mine of information that I still use for questions.

The main website – http://www.roadback.org – also has a wealth of information under the “Education Tab” and “Testimonials” that you may like to read through a few times to get acquainted with all the terminology and the rationale for using AP. This bulletin board also has a wealth of information where people come to share success and their pain, as they begin AP and face some of the possible hurdles to progress. Visit here regularly and you'll get to know everyone in no time. 😉 Everyone is welcome and we talk about all kinds of things like recent studies, discuss different protocols, what's worked or hasn't worked, etc.

So sorry about your friend with RA and in a wheelchair who didn't find minocycline worked for her. If she found it late, the unfortunate consequence is that it can't reverse damage already done and it can also take longer to work. People in great pain are sometimes unable to wait it out while minocycline takes effect in those cases, which can be years. She may also have not had the opportunity to begin with IV therapy, which is recommended for severe and/or longstanding disease to get a jumpstart. Dr Brown treated about 10,000 patients in his 50 years of practice and estimated that he had about an 80% success rate. However, he did remark in the book that it was far better to begin early, before damage set in.

This really is a longterm treatment and is not an overnight cure, as say with strep throat. It can takes months to see signs of improvement and, very often, due to the “herxheimer effect,” some patients will worsen before they get better. This happened to me in the first 3 months, before I started to very gradually improve. I think this is why many patients also give up AP, because they either weren't aware of this occuring for a time or they just need to be able to function with young kids, work, etc. I think it's also why many rheumies perceive minocycline as being less efficient than other DMARDs, as their goal is immunosuppression, rather than that rheumatoid disease is a “slow” infection that takes long term treatment and patience to turn around. That said, early cases do turn around much more quickly, in general, and even some longer standing cases have responded similarly!

Any idea why your liver is backing up other than genetics? Is this a new thing since your other symptoms began or have you always had it?  Milk thistle is a very good detoxifier and great for bringing down liver enzymes. You might also want to get started on taking a good probiotic in advance of starting antibiotic therapy. Candida can be an issue, so replenishing the gut with good fauna helps to keep the bad guys at bay. Also many people here use the Lemon/Olive Oil detox drink on a daily basis, which acts as a gentle liver flush and to help speed the removal of toxin release from dying bacteria. If you'd like the recipe for this, you can find it here: 

http://www.keephopealive.org/lemondrk.html
 
Also, just wanted to mention that shock/prolonged stress such as you suffered with the whiplash can very much be a trigger for these diseases. It seems that we carry our pathogens loads and they increase throughout our lives, until one day we either get sick, lose a loved one, have a car accident, or some other similar type situation, and all hell breaks lose. It's like the apple that tipped the apple cart. I don't think it's really known why this happens in rheumatoid disease (possibly a neurological or endocrinal component?), but there is a definite connection. In my own case, I got Lyme Disease and lost my mother all in the same month, in addition to a number of other things that occurred around that time with my thyroid and hormones. This triggered my own very severe, swift onset RA. I had read somewhere, too, that FM and CFS have been linked with car accidents. My mother's “autoimmune” Hashimoto's and Grave's Disease were triggered together after she had her pocket book snatched out of her hands while sitting in a rental car, touring Rome, which contained all the passports, money, ID, driving licenses, etc. Being elderly at the time, the shock was great.
 
Anyway…this is getting long and you're probably yawning now! Just wanted to welcome you and to encourage you to stick around here and read the book and main website and you'll be a professional APer in no time!
 
Peace, Maz  

 

[Susan LymeRA]

Well Maz, I can't speak for Orchid but I was spellbound.  You really should be a writer.  You say it so simply.

Orchid,  I used to have a saying “You can do everything right and if you are over stressed, it will cancel out all the good”.  Amazing I could think this way but could not seem to reduce the high stress rat race life I lived. 

An injury and the chronic pain that results such as to your neck qualifies as stress to the body.  Stress suppresses the immune system.  With the immune system suppressed bacteria, parasites, etc set up housekeeping.  They begin to tinker with your immune system even more by invading your cells where they escape detection and by grabbing your nutritional intake for themselves.  You grow weaker and weaker until one day whalla!  you have some chronic disease.

Your father's RA means genetically you are more prone to respond to disease in the same manner.  Mark my word, infection is part of the cause of your illness.  Another likely suspect is heavy metal toxicity.  Some people do not detox as well as others and for them, heavy metals such as mercury accumulate in them until it causes chronic illness.  You seldom have just one cause to your illness.

FDA has just acknowledged (finally) that mercury amalgams can be dangerous for certain people.  They whitewash it as best they can after so many, many years of denying there was anything harmful about placing mercury in your teeth.  This admission comes only after consumers banded together and sued them. 

http://www.iaomt.org/news/archive.asp?intReleaseID=272

Just goodgle it.  It is all over the news.  If you have mercury amalgams, get them removed. 

Everyone who had autoimmune disorders should be on this protocol.  If inflamation is severe then some anti-inflamatory measures may have to be taken at first.  Find a good AP doctor with experience.  Most rheumatologists don't want to take the time to identify and deal with all the possible triggers.  They just give you immune suppressing drugs and nothing else. 

If you live near DC, I will be happy to share the name of my Rheumy with you.  She believes in infectious causes to RA.

Good luck to you.  Definitely give this treatment a try.  And, by any chance, do you have your neck treated by a chiropractor?  They have always been much more helpful to me with my neck issues than a regular doctor who just wanted me to take pain killers.

Susan

 

[Kim]

Hey Orchid,

Very similar story here.  About 10 years ago I had a whiplash accident that was the end of any normalcy in my life too.  My jaw joints (both sides) were dislocated (big time TMJ) and I had bulging discs in my neck.  After a few years of painful (unsuccessful) PT, I had a cervical fusion, ensuing lawsuit, planned our daughter's wedding, a husband with cancer, sold a house, built a new house, did all the landscaping myself, hung drapes, etc. etc.  While building the gardens for my house I picked up multiple tick bites along the way which added to my problems.  I was also running back and forth to Chicago to help my daughter out with her newborn twins which is a 5-hr trip each way.  Finally my body just crashed and I realized how sick I was and getting worse each day.

Sounds like you are getting a grip on things and understand you have to be your own advocate for your health care.  I wasted a year of precious time that I could have been healing with a rheumatologist.  AP is a good, sound program that has helped so many people…..just got to figure what dose will be the right one for you and be willing to change it up a bit if you plateau too long or backslide too much.  Good luck figuring it out…….kim

p.s.  I'm an orchid enthusiast and have a collection of about 50.

[orchid]

Thanks to all of you for your kind words and wonderful information!

Maz – I appreciate all of your info and will definitely check out the liver flush. I'm not sure if this is something new, in fact – my doctor 4 years ago missed it when I had a CBC blood test. My recent doctor caught it (high bilirubin) was concerned I might have gallstones or something and ordered an ultrasound. Everything came back ok, but my levels are still high. They said it's a benign disease (gilbert's syndrome or something) but the fact that my liver isn't detoxing properly is just a little concerning! I will definitely check out the liver flush you mentioned!! I truly haven't felt the same since I went on synthroid 4 years ago — so unfortunately I've had to be my own advocate because the doctors weren't treating me correctly. That's a whole other story!

Susan – Yes! Stress has definitely been the trigger here. I've been doing everything I can to de-stress (yoga, walking, eating right, doing fun things to get my mind off my health issues). I just feel so old when I'm so young (30)! My husband is very supportive and I'm not working right now – couldn't handle THAT stress right now, too! I actually haven't felt any joint pains today — I live in Chicago — it is very humid today. Like I said the joint pains I DO feel are not severe but they are noticeable to me and I think I'm hypersensitive to my body since the accident – I notice every little thing. I do see a chiro along with an acupuncturist and PT.

Kim – Thanks for your story. It makes me feel not so alone in all this. Although, I wouldn't wish this on anyone. I LOVE orchids! I can't have any around the house because of our cats, so I have to display the fake ones!! I would love to see your collection — post a pic sometime!

[Serenity]

Hi Orchid,

I share a lot of the same traits as you.  I'm young (30 – 1st diagnosed when I was 28), and my doctor caught it very early.  Minocycline is the 1st RA medicine I've been on, and I'm doing well on it.  My numbers are still elevated, but they aren't crazy high (never were – the highest my Sed rate has been is 50).  I do have a slight ache in my hands when i 1st wake up, but it goes away fast.  On a scale of 1-10, the pain is a 1.5 at most.  So I am definitely doing okay with minocycline.

I believe my RA was triggered upon my return from India.  I got very sick, and the doctor did not presribe antibiotics (she said she would if the nausea and diarrhea did not subside within 5 days.  My illness lasted that long).  6 months later, all the pain started.  So I either have Reactive Arthritis or Rheumatoid — my doctor is going with Rheumatoid.

I think because you've caught it early on and have not tried any other more serious RA meds, you are a great candidate for AP.  It may not be the perfect treatment but it is the safest, and definitely the 1st one you should try.

Also, I am a vegetarian as well, and have been since I was 13.  I think it is a good diet for RA, but if there is one thing I'd like to change about my diet, it would be eliminating or severely restricting my intake of gluten and dairy.  When I haven't been eating “clean” I can feel it in my body. 

Good luck with your journey!

[orchid]

Hi Serenity,

We do sound a lot alike. I'm glad you seem to have a handle on your RA. I, too, am trying to restrict my gluten. I don't eat a lot of dairy so that's not an issue.

Good luck to you also!

[Author]

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