Migrating or worsening joint pain with mino

[Kathy1465]

Hi. First post to the forum. In quick summary I was diagnosed with ra in May of this year. But I had my first flare last summer (was blown off as a virus at the time). I have been on methotrexate (5 per week) and 5mg prednisone since that time. Once the steriods were started I felt much better. No more swelling and not much pain, except in my back. Right between the shoulder blades. The pain was awful and never left me. I tried PT and a chiro. The rheumy said it was myofacial pain and wanted me to try Cymbalta. I cannot begin to tell you the doctors I have seen in the past few months fir this pain and the pills (Tramidol, muscle relaxers, etc.).

I did not seek antibiotic therapy, it found me. A month and a half ago I had a week long course of clyndy (600mg total per day) for a root canal. This was the first time my pain has left my back. Interestingly it went into my elbow (a place I had not had pain before). To make a long story short, I started the protocol on this website shortly thereafter. For the last three weeks I have taken 100mg of Minocycline (Watson brand) twice per day. Also was fortunate enough to speak with Dr. S in Iowa by phone who recommended 900mg of clyndie once per week to kick start things. Surprisingly, my family doc and rheumy have been on board with this!!! (although the rheumy is talking Enbrel in another three months when I go back to see him if things don’t improve).

My question is since I started the therapy, the pain that used to only be in my neck has gotten better, but other areas are worse. My elbows were killing me for a few days, then my hands and wrists. Later it was hip pain. The last four days my left heel is terrible. I am just hobbling around on it to walk.

I can’t decide if I feel better. Where once it was all just back pain for three months with no relief, now it is like the pain I had with my first flare. It moves and it is very strong. I know about the reactions we have from die off but I don’t know if this is die off or the start of another ra flare. Has anyone else had this experience when starting AP therapy? Any advice is really appreciated.
When will it get better? Why is the pain moving around again?
Kathy

[Joe RA]

Hi: Kathy,
All I say is,”Somebody Up There Likes You”
From your discription it sounds like everything is clicking for you, from early diagnoses to the clyndy to the minocycline bid to the 900mg weekly clyndy jump start. You are well on your way and I Believe you are having a nice big
Herx reaction and it is all working in your
favor. Although I never had a Herx reaction but I have been on this forum for many years and have read allot of posts discribing them. With all the antibiotics you are taking, I hope you are taking enough probiotics, something many dr’s
don’t tell you about.
Good luck to you and the best to all,
….Joe RA….

[Maz]

@Kathy1465 wrote:

I did not seek antibiotic therapy, it found me. A month and a half ago I had a week long course of clyndy (600mg total per day) for a root canal. This was the first time my pain has left my back. Interestingly it went into my elbow (a place I had not had pain before). To make a long story short, I started the protocol on this website shortly thereafter. For the last three weeks I have taken 100mg of Minocycline (Watson brand) twice per day. Also was fortunate enough to speak with Dr. S in Iowa by phone who recommended 900mg of clyndie once per week to kick start things. Surprisingly, my family doc and rheumy have been on board with this!!! (although the rheumy is talking Enbrel in another three months when I go back to see him if things don’t improve).

My question is since I started the therapy, the pain that used to only be in my neck has gotten better, but other areas are worse. My elbows were killing me for a few days, then my hands and wrists. Later it was hip pain. The last four days my left heel is terrible. I am just hobbling around on it to walk.

I can’t decide if I feel better. Where once it was all just back pain for three months with no relief, now it is like the pain I had with my first flare. It moves and it is very strong. I know about the reactions we have from die off but I don’t know if this is die off or the start of another ra flare. Has anyone else had this experience when starting AP therapy? Any advice is really appreciated.
When will it get better? Why is the pain moving around again?

Hi Kathy,

Just adding a warm welcome to Joe’s! Glad you found us and hope you settle in here for the duration…it’s a terrific bunch of people who frequent here and everyone is always welcomed. 🙂

The type of migrating pain you’re describing is exactly what I have experienced, especially at the outset. If you’ve had a chance to read The New Arthritis Breakthrough by Henry Scammell, it’s described in the book as being a bit like a smoke-hopper…jumping around from joint to joint as the immune system zeros in on one location to quench the flames, the fire just races off to heat up in a new place. This is also pretty classic for Lyme disease. One Lyme Literate MD I heard speaking actually said that Lyme is “the only” disease that manifests in this way. In my own case, my highly sero-positive RA began as palindromic RA (quite swiftly after noticing two bulls-eye rashes), but then later became more fixed in my joints, especially my knees, which Lyme loves. I also had very bad neck pain, which is fairly classic for Lyme meningitis. After beginning abx therapy, my herxing went on for a good three months, after which my labs started to fall.

It’s probably also important to know that flaring doesn’t just stop when one begins AP. It can and still does recur until remission is reached. This is because abx therapy isn’t suppressing immune function, like predisone will do. Flares should, however, gradually become less frequent, less intense and shorter in duration. The aim of AP is to actually slowly re-train the immune system over time to stop being so reactive to the toxins the bugs release. As Brown described, it’s not actually the bugs that are the prime problem for rheumatics…lots of folk are walking around with mycoplasma or Lyme and may never know it…the problem is that some people become allergic to, or hypersensitive to, the toxins released by these bugs. Brown called it, “bacterial allergy,” and it’s a well-known phenomenon in infectious disease circles…just not as widely accepted by conventional medicine as it relates to rheumatic diseases.

If you can, try to read Henry Scammell’s book, as it will help to reassure you on most of the questions you’re asking. I must have read it 4 or 5 times in my first year or two so I could really understand what I was choosing in terms of treatment with AP. Another important thing to remember is that abx therapy is not a quick fix therapy and so it will feel like a three step fwd and two step back dance all the way to remission. Getting regular labs pulled can help over time to see those numbers falling….but learning how to detox is a “must” while on AP. When really sick in the beginning, the last thing any brain-fogged person needs is to have to learn and take on board “too much information!” So, just starting with some simple palliative measures can help, like the epsoms and peroxide baths and lemon/olive oil detox drink…and doing one’s best to eat a clean diet, free of sugars. Also, being sure to replenish the gut with good probiotics is imperative while on abx therapy.

Here is a link on the main site to a Pain Mgt specialist in NJ who is also a RBF AP doc…he offers some insight how to help relieve the pain of herxing:

Ach…just noticed that the main website isn’t responding! When you get a chance, though, try to read what you can under the Education tab on the main site. If you type in “Weg” into the search box, the article on herxing and detoxing mentioned above should come up. 😉

Hang in there, Kathy…this is very early days for you and, if you watch the Dr. Brown documentary at the top of this forum, take note of the bone scans Dr. Brown shows of one patient on AP over the course of 3 years….it will provide an idea of the type of time-frame one is looking at with RA….some folk are fortunate if they can turn it around early within the first year. For most, however, it can take 2 to 5 years for full remission to be reached. Controlling inflam during this time is important, as it’s inflam that causes damage…but detoxing is one very good way to do this.

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