Encouragement Needed!

[Jamie]

Good Afternoon, I wanted to write about some recent blood work I had done. Yes, I am the same girl who started the thread “New Comer’s Story”. I started taking minocycline back in August, 2017. I was able to convince my family practice doctor to try it with me. Besides feeling better, he decided to run some blood work a few months after starting the antibiotic. My R Factor dropped from 20 to 13 – as this was the only blood test that has ever come back abnormal. He was amazed. I then began having some concerns about some mild “break through” joint pain along with signs of some kind of infection. In my previous post, I explained that I first became interested in how antibiotics effected RA because of a root canal gone bad. The tooth had to be pulled and an infection occurred. I was given Augmenten for the infection and miraculously my joint pain went away. When I completed the 10 day supply of antibiotic, about 2 weeks following that my joint pain started coming back. This is what launched me into this journey. Anyway, I have continued intermittent pain and discomfort in the area where the tooth was removed. Everything is healed up (at least from outward appearances), but their is occasional pain that comes and goes. I talked with my doc about the idea that he should have run mycoplasma testing prior to me starting the minocycline I suggested that I stop taking the Minocycline for 1 month and then have a battery of test run to see if there is other bacteria we are dealing with. I stopped taking the Minocycline on June 1st and returned to the lab on July 2nd for a load of tests. He ordered a Mycoplasma Antibody, GC/Chlamydia, and ANTISTREPTOLYSIN QUANTITATIVE. In addition, ESR, Sed Rate, R Factor, and ANA. After about 10 days of being off the Minocycline, I could tell I was not taking it. Boy, my joints were hurting badly. Well, the day after having all the blood work done, I started taking the antibiotic again. For the past 4-5 days I have been feeling much worse, as I expected. Besides just feeling very run down and joint pain, I have a fever blister on my lip and there are bumpy sores around the area where the tooth was extracted a year ago! The area is very painful too. Today, the test results came back and my R Factor popped back up to 20 and the ABA with reflex came back positive for the first time ever! 1:160 Homogenous. My doc is very concerned and thinks that I should abandon the antibiotic protocol and go see a rheumatologist. I have an appointment with him on Friday of this week. I guess my thought process is . . . shouldn’t the rise in my R Factor and the positive ANA when I am not taking Minocycline be a sign that it DOES WORK??? And when I was taking the minocycline that my R Factor dropped? As far as the other tests, the sexual transmitted disease test came back negative (as I expected), the ASO titer was 138 (0 – 530 normal), DEOXYRIBONUCLEASE B ANTIBODY was 191 (0 – 300 normal) and Mycoplasma IGg – positive, Mycoplasma IGm – negative with a note that states “results suggest past exposure”. Help! Does someone here have some insight?? Is this Lupus? Does clindamycin fit into this picture at all?? I love my family doctor, but I’m thinking I need to see someone who understands all of this. The truth is, I have insurance through the affordable health insurance plan and I am afraid that none of the doctors that can help me are on my insurance. I am self employed and my finances are very limited. I always feel guilty when I write these long posts, but I do not know who else to reach out to. I’m happy to talk with anybody personally. I need some help.

[Spiffy1]

With your obvious tooth problem, I would NOT stop until you find someone to help you fight this infection. You need to find a doctor that will listen to your story. It is so obvious this tooth is the problem and/or at least still part of the problem. Your joint pain went away on your ten day antibiotic treatment. I would not resign myself just to accept the circumstances. Keep fighting. If it was the doctor’s tooth I Believe he would also be trying to get to the “root” of the problem. Please keep us posted. I don’t know much at all about this, but possibly you could find someone to do some sort of biopsy of that area and see what it could grow out? Do dentists or doctors ever do this?

Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWF

[TreeinTX]

I recommend seeing a biological dentist to assess the tooth issue. Here’s the website to find one: https://iabdm.org/location/

The ANA is the antibody test with a ratio result in my experience. It’s a good question about the anti centromere result of >8 as my daughter had same. I wasn’t able to find anything online that helped explain it. I hope someone in this great group will know.

[Maz]

Hi Jaime,

I think you might have already seen your doctor yesterday, but some further thoughts and ideas to add to the above:

I stopped taking the Minocycline on June 1st and returned to the lab on July 2nd for a load of tests. He ordered a Mycoplasma Antibody, GC/Chlamydia, and ANTISTREPTOLYSIN QUANTITATIVE. In addition, ESR, Sed Rate, R Factor, and ANA. After about 10 days of being off the Minocycline, I could tell I was not taking it. Boy, my joints were hurting badly.

Sometimes the STD testing is run to (a) look for the potential for reactive arthritis (which if you believe in infectious causes for rheumatic diseases, all are reacting to foreign antigen) and (b) syphilis testing can be a useful marker, hinting at lupus, because it can be falsely positive in lupus. I find this kind of interesting, because a “false” positive may just mean negative for syphilis, but what about other potentially cross-reactive species, like a form of oral bacteria that are also spirochetes, such as trepenoma denticola, H. Pylori, or Lyme disease (borrelia burgdorferi)? Looks like you got screened for other STDs that can potentially cause reactive arthritis, such as gonorrhea and chlamydia trachomatis? If you do wind up having a lupus panel, this is just to say not to be surprised if you see a syphilis test being run.

Well, the day after having all the blood work done, I started taking the antibiotic again. For the past 4-5 days I have been feeling much worse, as I expected.

Sounds like you have done your AP homework!

Besides just feeling very run down and joint pain, I have a fever blister on my lip and there are bumpy sores around the area where the tooth was extracted a year ago!

This could be related to the dental issues, but one of the symptoms of lupus in 40-50% of patients is mouth sores that can appear on the lower lip, inside the cheeks, and on the roof of the mouth. They may/may not be painful, red ulcers in the center with a whitish halo. This is the sort of diagnostic clue that a rheumatologist would assess.

The area is very painful too. Today, the test results came back and my R Factor popped back up to 20

Fortunately, your RF is pretty low – there are people here with it in the hundreds and can also appear in otherwise healthy folks as a post-mycoplasma pneumoniae reaction. Perhaps also worth noting, as well, that a minorly elevated RF can occur in lupus patients.

and the ABA with reflex came back positive for the first time ever! 1:160 Homogenous. My doc is very concerned and thinks that I should abandon the antibiotic protocol and go see a rheumatologist.

Having an ANA with a homogenous pattern can be indicative of one of a few types of autoimmune disease, such as systemic lupus erythematosus (SLE), mixed connective tissue disease (MCTD) or drug-induced lupus erythematosus (DILE). Although, I’ve seen some literature where it can appear in other non-rheumatic conditions. Lower titers can also appear in healthy people who are symptomless, for no apparent reason. As you also have picked up on, sometimes latent forms of rheumatic disease can erupt with herxing and fade away over time as the person improves on AP. Here’s the thing, it is possible to have an ANA with homogenous pattern and both RA and lupus (called “Rupus”) at the same time and it can be difficult to decipher the differences between the two unless there are clearly identifiable signs/symptoms, such as a butterfly rash. The thing to remember is that a positive ANA (homogenous pattern) isn’t enough to determine what rheumatic disease sub-type a person has, because it is just a first-line screening test. Further testing needs to be run, if the ANA is positive, to nail down the rheumatic disease. Visiting a rheumatologist couldn’t hurt to get baseline screening, just so you know what you’re dealing with, if at all possible. Rheumatic diseases can begin in a very dramatic way or creep up over time, so following up with testing, over time, can be helpful, too, if the early picture isn’t too clear.

I have an appointment with him on Friday of this week. I guess my thought process is . . . shouldn’t the rise in my R Factor and the positive ANA when I am not taking Minocycline be a sign that it DOES WORK??? And when I was taking the minocycline that my R Factor dropped?

That’s a reasonable possibility, yes. If you were noticing improvements since beginning AP in both labs and symptoms over the past year, then clearly the treatment was helping.

As far as the other tests, the sexual transmitted disease test came back negative (as I expected), the ASO titer was 138 (0 – 530 normal), DEOXYRIBONUCLEASE B ANTIBODY was 191 (0 – 300 normal) and Mycoplasma IGg – positive, Mycoplasma IGm – negative with a note that states “results suggest past exposure”. Help! Does someone here have some insight?? Is this Lupus?

Lupus patients can use minocycline and have done well on it. In fact, there will be a new blog published next Thursday on the site, which is an actual transcript of Dr. Brown talking about lupus and AP. In his view, all rheumatic diseases were treatable to varying degrees with AP. If you haven’t yet subscribed to receive emailed blog notifications (they go out monthly), then you might like to in order to get the notification of when it is published. You just add your name and email here and click submit: Blog subscription

Lupus patients, on the whole, tend to be hypersensitive to a lot of things, so generally the approach is “low and slow.”

Does clindamycin fit into this picture at all??

Dr. Brown used clindamycin IVs as both a first-line treatment to help clear out other pathogens that could be unresponsive to tetracycline antibiotics prior to beginning oral therapy, but also in long-standing disease, and for patients in the midst of disease flares. For the most part, though, early, mild disease patients can do well without adding IV clindamycin. Dr. S. wrote about IV clindamycin in another blog, here:

IV versus Oral: One Physician’s Experience

Try not to be discouraged at this early stage, Jaime. Any change in a person’s antibiotic protocol can elicit new rounds of herxheimer flares. Stress alone can bring on a flare, so my best fellow patient suggestion is that if you want to keep your GP on board, go see a rheumatologist for a work-up. You will want to rule in/out SLE, MCTD, and DILE in the work-up, and this way you will know what you’re dealing with. Knowledge is power in this context and Dr. Brown asserted that all rheumatic diseases at any stage could be treated with AP, though length of time to remission and degree of success might vary depending on tons of individual variables. E.g., entrenched disease states may be trickier to reverse, especially where there is irreversible tissue damage. He regularly saw the worst of the worst cases, usually because people sought him out at the hospital because all else had failed.

[Author]

Posts