Infectious causes to RA

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2sick
Regular Member


Date Joined Jun 2007
Total Posts : 27
   Posted 6/22/2007 2:50 PM (GMT -7)   
Wow, I can't believe I see no one talking about this here. 
 
When I was diagnosed with RA, my rhuemy said "We don't know what causes it and we don't know how to cure it, but we can slow it down".  That was not what I wanted to hear.  Like all of you probably felt, I was terrified.  I went home and began researching RA.  Just because the cause is not known, does not mean there is not a cause. 
 
To my amazement, there is much documented research clearly indicating a number of causes.  One of those causes (triggers) is Lyme disease.  I already had a positive diagnosis for lyme which had not phased the rheumy or even peaked his interest.  Another possible trigger I found was food allergies and this particular article promoted a vegan diet (no animal protein of any kind not even dairy or eggs).  It said if food is your problem, go on this diet and you will see improvement within 2 weeks.  I felt I could do anything for 2 weeks and it cost me nothing to try. 
 
When I began the diet I could not stand long enough to shower due to swollen feet and ankles.  I could not hold a pen to write or brush my hair due to swollen fingers, hands and wrists.  All my joints were inflamed except my hips and spine.  Two weeks later, my swelling had reduced about 50% from diet alone and I could now walk 2 hrs before having to sit.  I could write and brush my hair again.  This was very important to me. 
 
When I went back to the rheumy for my follow up and told him about the diet results, he said "it has been scientifically proven that animal proteins promote inflamation in the joints".  Uh-huh.  Why didn't he tell me not to eat animal proteins the first visit?  When I said I wanted to try low dose minocycline instead of mtx, he about screamed me out of his office.  He did agree to give it a try though.  Six months later I was so much better, he happily refilled my prescription.
One year later, he declared me nearly dormant and bloodwork supports this.  I have dropped from a high moderate to a weak positive. 
 
I found a doctor who was trained in nutrition to help me identify my food sensitivities and now I can eat lean meat without causing swelling to my joints.  If I slip up and eat food I am allergic to, my joints react.
 
The low dose minocycline reduced my RA significantly but did not put me in remission.  I have sought and finally found a rheumatologist who believes in infectious causes to RA.  She has run extensive tests and found in addition to lyme I have babesia.  She strongly suspects strep in my gut but that test had not come back as of my appt last week.  She says when we eliminate these triggers, we will most certainly put the RA into remission.
 
Many rheumatologists do not pursue infections as a possible cause.  They only treat symptoms.
If anyone here is interested in identifying and eliminating their causes to RA I highly recommend you research to learn about the many identified causes (there is no one single cause) and find a doctor who believes in and is trained in this approach.  I will be happy to share with everyone things I have learned and sources I reference if interested.
 
 
 
 
 

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 6/22/2007 4:57 PM (GMT -7)   
Hey there 2sick.. welcome to Healing Well and the Arthritis Forum.. Actually there are quite a few discussions on here about infectious diseases and Reactive and Rheumatoid Arthritis.. The other moderator of this forum, actually has RA due to untreated Lyme disease.. you can find her story on here as well..

Good luck to you, and hope to see more of you on the boards..

Duck
Moderator of Arthritis Forum
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 6/23/2007 5:27 AM (GMT -7)   
thanks for the topic. I too have Lyme disease, and MS.
I have been in lyme treatment for 9 months and am feeling really good. Many of my MS problems are begining to resolve.
 
For the past week I have swelling in my ankles, toes and instep: both feet. Prior to this, over the years I would have "feelings" of hot swollen insteps etc., but they never swelled.
I also have many Fibro symptoms, Chostocronditis, sore joints. These symptoms come and go... very typical  for lyme.
 
I posted on the Fibro board about my swelling and I'm being told inflammation is not a symptom of Fibro. I was surprised..so, now I am reading about all of you here on the Arthritis board,,,and I suppose my symptoms are more  arthritis like. Thank you for sharing all that you deal with each day.
 
I agree that RA, Fibro, CFS like MS etc has an infectious cause. I have been taking Minocycline for these months and on my prescription is says: Minocycline is used to treat Rheumatoid Arthritis....???
 
my question is:
how do doctor differentiate between who takes Minocycline and who takes steroids?
Hopefully some of you who suffer with arthritis will begin to ask your doctors this very question, and you too can begin the healing process.
 
so many symptoms in common with all of you,
tory 
 
 

2sick
Regular Member


Date Joined Jun 2007
Total Posts : 27
   Posted 6/23/2007 6:35 AM (GMT -7)   

Hi Tory,

Wow, your prescription information actually says mino is used for RA?

Most rheumatologists do not believe in an infectious cause to RA.  I can't understand that position because there is a lot of good research that proves in most cases infection is behind it.  My rheumy was one of those.  He thinks the mino (which he prescribed only at my pleading) works as an anti-inflamatory only.  He would prescribe steroids which are a disaster if in fact you have lyme or other bacteria.

I take a very low dose, 100mg on Mon, Wed, Fri.  This protocol was used successfully for 50 yrs by Dr Thomas M. Brown.  He was a rheumatologist who researched and proved infectious cause to most RA.  He researched at Georgetown University.  He believed the low dose pulsed every other day worked against mycoplasma.  He said Lyme and Strep were two other bacterias he found in the synovial fluid of RA joints and they would require more aggressive therapy.

Until now I had no one willing to test for these bacterias.  I have now found a rheumatologist who believes in infectious causes.  I will keep posting on our progress as it occurs.  I have only just begun with this doctor.

I tested positive for Babesia which is an intracellular parasite that lives in the red blood cells.  She is most concerned about this parasite at present and my swollen left wrist.  She is concentrating on them.  I have started plaquenil (will begin it today actually) and she is trying to get insurance approval for Enbrel.  These are to calm the inflammation. 

I am not sure what she will prescribe for the babs but believe it will be either quinine and clyndimycin or Mepron and Azithromycin.  I hope the latter as I read fewer people suffer side effects from it than the former.

At present she wants me to continue the minocycline.

Initially I had swollen feet and ankles too.  Very hard to stand on them.  I changed my diet and that reduced my inflammation greatly.  If you are eating sugar and refined carbs, try cutting them out.  Also, for many people, nightshade plants cause swelling.  That didn't prove to be so for me but from what I read, I am one of a very few not bothered by them.  The nightshade plants are: white potatos, green peppers, tomatos, eggplant.

Is mino the only thing you are doing for your lyme? 

 

 


tory2457
Regular Member


Date Joined Jan 2007
Total Posts : 380
   Posted 6/24/2007 5:26 AM (GMT -7)   

Hi 2sick,

Sounds like you might consider a doctor who is educated with lyme disease. If you tested postive for lyme and was treated conventionally you probably were not treated long enough? The IDSA guidelines state 6 wks of treatment is all that's required!! The IDSA guidelines believes in chronic lyme and realizes treatment can be up to a year or two!

Not many of us have a positive test result for Babesia, yet most of us do have this parasite. My guess is when you were on low dosages of antibiotics it loosened up your antibodies which then allowed testing to be successful.

Testing for both lyme and all the co-infections  isn't foolproof. Most of the sickest people test negative especially through an ELISA because our immune systems can't recognize this horrible bacteria.

I can tell you that if you have Babesia you also have Borrelia Burgdorferi. Hopefully, you will find a doctor who can treat you for all.

no, I'm on more than Minocycline. I have been on Mino with other abx. Lyme docs put us on continous abx to try to eradicate this bacteria as quickly as possible. The m,w,f regimen I don't think is enough. The bacteria is very smart, and can change from a spirochete into a cyst form depending on the environment; its called pleomorphism! It's this reason that docs prescribe different abx at the same time.

Mino is very good crossing the Blood Brain Barrier, and so many of us with MS use Mino.

has your new doc talked to you about why steroids is the worse thing you can take? Steroids is the food source of this bacteria....yikes!

Here's a great article by Marjorie Tietjen called Lyme Disease: Unraveling the Mystery of Misdiagnosis

http://www.newhaven.edu/unh/lyme/News.html

I noticed you are posting on the lyme board...great to have you. I can't wait to watch your progression with your RA, and reading that you too are on your road to health!

very best to you,

tory

 

 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/24/2007 1:35 PM (GMT -7)   
Hi and I'm sorry you are not getting the information you are seeking, however I had not heard about animal proteins causing joint inflammation, but just wanted to add that I developed my joint inflammation and I am vegetarian, so it depends on the person I suppose. Having said that RA can be caused by a variety of things..mine was caused by a virus. It is frustrating because there are no clear cut answers as to WHY we have developed RA..

2sick
Regular Member


Date Joined Jun 2007
Total Posts : 27
   Posted 6/24/2007 5:50 PM (GMT -7)   

Hi Tory,

Thanks for the warm welcome and hope for my healing.  The rheumy I am working with ran a gazillion tests and found lyme, babs, Q Fever and EBV so far.  She had ordered more tests but apparently there was not enough blood sample to run some of the tests, so they took more blood (I think I have supplied enough blood for all the folks in NYC) and we have yet to hear back on those.  She highly suspects strep in my gut which is something I wanted tested for a year but the old rheumy did not believe in infectious causes to RA and would not test for anything.

The good news about all these bad infections is that if we can clear them up, it should also clear up my RA and put it into remission.

Momto3, (oh you're busy!)

Please let me clarify about animal proteins.  They don't cause joint inflammation except perhaps with gout.  They aggrevate joints that are already inflamed which is also true of nightshade plants.  Having said that, I seem to be able to eat both without any obvious reaction.  Whole fruits and veggies are our best defense against inflammation.  Of course if you are vegetarian in the way my daughter was for years, you eat mostly pastas, cheese, beans and not many cruciferous veggies, then you are probably aggrevating your inflammation. LOL. sad

My illness too began with a virus.  It caused my immune system to tank at which point all this other stuff activated.  Therein lies the answer to why we get sick.  Our immune systems are dealing effectively with lots of toxins and foreign invaders every day.  As long as we have an adequate immune system, we stay healthy.  Then something causes our immune system to collapse such as a virus and now all the dormant bugs we have accumulated in our lifetime comes to life and our immune system runs wild trying to deal with it all.

I have also tested highly toxic with lead and mercury, but every attempt to chelate it  so far causes horrible joint flares. 

My current rheumy says that is because we must clear out the parasites (babs) first.  She is very knowledgeable in infections that cause RA and I am sooooo hopeful we can clear this whole thing up.  Until now I have treated mostly holistically except for low dose minocycline and was doing very well.  A second tickbite on mother's day weekend took me down and I just couldn't deal with it anymore.  I'm going the allopathic route now and of course will continue to take care of my body to offset the damaging side effects of the abx.

I have just started plaquenil and the doctor is petitioning the insurance company for Enbrel.  Enbrel scares me.  It reads like a horror show of side effects.  I'm trying to read everyone's success story with it that I can find.  I will probably start a separate post seeking some comforting words.

Thank you all for your supportive posts.  Momof3, I'm sure your doctor probably won't be very receptive to the idea of an active bacterial, parasitic and/or viral cause behind your RA, but I hope you will research it and if you feel it could be you, find a doctor who will test you.  If you do have one or more of these triggers, the good news is getting rid of the trigger will get rid of the RA.

 


The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 6/24/2007 11:37 PM (GMT -7)   
Hi 2sick, Bear here. Thing to remember about side effects, any side effects of any drug. is that they MAY affect SOME of the people SOME of the time. The long list of side effects that come with meds only reflect those side effects that have been reported by the people prescribed them. In theory there may only be one person who has reported each side effect individually. Of course that is not the case but when you think of how many people take each drug and how many people get each side effect - get my drift. If I worried about the side effects of the meds for pd I would end it all now. Side effects are like the conditions themselves - they affect individuals individually, where they affect them at all. Please don't let the possibility of some side effect deflect you from taking what may well be a very effective drug FOR YOU. OK Sermon over and best of luck wth whateever you decide.
The Bear

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 6/25/2007 8:50 AM (GMT -7)   
Hi again, actually in the beginning he thought it was parvo-virus of all things since I was teaching young children and I was fine until I went back to work and that November I got really sick and sometime after that ended up with terrible joint pain in my knees. We waited and waited for several months to see if it would subside all the while taking every NSAID made! However, after 6 months came to the conclusion it was not viral but something else.. I'm now on week 7 of MTX and finally starting to get some relief.

Oh and the vegetarian diet? There are several forms of vegetarians and some do eat cheese etc. I am one of those :)

Hang in there, I know its frustrating!! We have all been down this road.
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