sero-negative — Michigan

[Anonymous]

Has anyone had luck with this treatment who has tested negative for RA?   I've been treating 2 years on standards RA treatment –Humira, methatrexate, etc. and no progress.  Main problem is in my wrist joints.  Also, anyone treated with any doctors in Michigan with success?

 

Moved this post to General Discussion where you will be able to receive replies – Personal History section for author's posts only. 

[Jo]

[user=453]denje[/user] wrote:

Has anyone had luck with this treatment who has tested negative for RA?   I've been treating 2 years on standards RA treatment –Humira, methatrexate, etc. and no progress.  Main problem is in my wrist joints.  Also, anyone treated with any doctors in Michigan with success?

 

Moved this post to General Discussion where you will be able to receive replies – Personal History section for author's posts only. 

My Mr Perfect tested negative for RA, however, you should be aware that the tests are for inclusive use only. They can not say someone doesn't have it, if the symptoms are there and the tests are negative.

Mr Perfect was on Humira and mxt as well.  Standard treatment is simply a poor attempt to control the inflamation and pain, and there are other ways.

We put Mr Perfect on MSM for the inflamation. It's a slow build up because of the possible detox effects. By the time we got to 12,000 mg per day, we dropped the Humira with his doctors permission, and next visit we dropped the mxt.  Don't need to take nasty medicines for inflamation, when you don't have any more inflamation. His sed and CRP have dropped to normal.

Mr Perfect has been on simple tetracycline since Feb, and we've watched his Neutrophils slowly drop. 

This caused his doctor to finally order the PCR Mycoplasma panel, and now we know what he's positive for.  Mycoplasma pneumoniae IgG Pos

From this point on we focus on killing off this mycoplasma bacteria using the AP protocol. 

Our Rheumy is not an AP doctor, so we have to do all of our own research. But she is co operative.  Maybe if all this works out, by the end she will end up added to the list.  But it has to work out first.

Anyway, that's as far as we've gotten. But Mr Perfect is over the moon to be off the nasty shots every week. 

Jo

[Maz]

[user=453]denje[/user] wrote:

Has anyone had luck with this treatment who has tested negative for RA?   I've been treating 2 years on standards RA treatment –Humira, methatrexate, etc. and no progress.  Main problem is in my wrist joints.  Also, anyone treated with any doctors in Michigan with success?

 

Moved this post to General Discussion where you will be able to receive replies – Personal History section for author's posts only. 

Hi Denje,

Yes, it's generally regarded that those who test negative for all the usual RA tests tend to have a much better prognosis and respond much faster to the antibiotic protocol (AP).

There are so many possible pathogens that can cause reactive arthritis, which essentially is how RA should be described…it's a hypersensitivity reaction to some type of pathogen(s) that has a proclivity for collagen-rich tissues and has the ability to evade the immune system by hiding within host cells.

I was reading something recently…may have been by Amy Proal or one of the Lyme video clips recently posted….who said that the extent of our current knowledge about pathogens is that we've probably only been able to isolate and name 0.01% of them! That leaves 99.99% still out there about which we have no knowledge. However, knowing that we know just a tiny fraction about the pathogen soup in which we live, it makes little sense to suppress the immune system and leave ourselves open to whatever else might seize the opportunity to grab hold.

If you've had the opportunity to read, “The New Arthritis Breakthrough,” Dr Brown describes the case of a young girl who displayed all the early signs of rheumatoid disease. He decided to treat before it became fully blown and she went on to live a pain-free, disease-free existence. Brown was very much of the opinion that it was better to treat early (when symptoms such as fatigue, low grade fevers and vague rheumatoid symptoms presented), as there was a good window of opportunity to turn things around much more quickly, before the immune system became overly hypersensitive and less easy to “re-train.”

Minocycline is an approved American College of Rheumatology DMARD (for “off-label” use…meaning it was created for other purposes and already had FDA approval for these, much like methotrexate and plaquenil, but could be used at a prescribing physician's discretion for other purposes). So, if you ask to try this in addition to your current meds, you aren't asking for anything that isn't already used by rheumatologists for RA. The only thing is…you may be prescribed the standard dose of 100mg twice a day, every day. This is because mino has immunosuppressive properties at this dosage. This may not be such a bad thing if your intent is to gradually wean off the Humira, mtx, etc., to ensure you don't experience any whiplash flares. However, an experienced AP doctor would be able to help you with dosing.

If you would like an AP doctor listing, just drop a line to apdoctors@roadback.org and ask for a list of both local and more experienced AP doctors, if you are willing to travel.  

Peace, Maz  

 

[Texas T.]

I have a negative Rheumatoid Factor (RF) – therefore I am neither seropositive or seronegative.  My understanding is this MAY mean our disease will be less severe.  It does not mean our inflammation and pain is any less severe in the effected joints.

I have been on Doxy since August, 2007 and Zith since February, 2008.  I took MTX and PRED for 4 months until I could find an AP Dr.  Stopped both MTX and PRED in October 2007 and my last blood work showed my SED Rate = 4, and CRP = 1.11.  CRP is a little high but I understand the SED Rate usually drops first and the CRP will follow.

Inflammation in my knee is well controlled with Doxy and Zith.  Still have some inflammation in my ankle and thumb but that hasn't slowed me down.

Now you all might find this odd – but I get INSTANT pain relief in my ankle by wearing high heel shoes.  I think it repositions my ankle joint to a position that does not hurt.  I was in flat shoes all day today as I was working in the yard and painting the trim on the back porch and my ankle was SCREAMING at me.  I just took a shower and put on my high heel sandals and the pain is gone.  I can walk pain free in heels that are 2 – 4 1/2 inches high but flat shoes are ouchy.

I agree with others on this board that we should turn our immune systems UP to fight the cause of arthritis – not turn it down to mask the symptoms.

Wishing each of you healthy days ahead. 

[Author]

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