AP Started – Question

[Kentucky22]

Hello,

I posted on here a few months back. I am in my 40’s, male, had Raynaud’s for around 2 years, but late 2021 I started getting swollen hands and arthritis like symptoms. I have a very high ANA 1:1280/1:640 range (Speckled/Nuclear Dot) pattern if labcorp in Dublin, OH does it. There is another labcorp specialty lab that checks for SSc antibodies, and they report my pattern as (Speckled/Centriole). I find it interesting that even though there is an international standard for patterns, interpretations are not concrete.

I had been on the fence for trying AP, due to most my symptoms (arthritis and swelling) going away early 2022.

Even though my SED/CRP was almost non-existent last I checked a month ago, I decided I better see if AP could potentially reduce my ANA levels. I also tested positive for mycoplasma IGG, but I am not certain that is clinically significant.

My AP doctor put me on Doxy 2x daily – I’m not 100% sure why doxy over mino, but I suspect it may be due to my bloodwork showing more signs of Lupus instead of SSc (low c3/c4). I started doxy three days ago and am hopeful.

My hopes are that I can see an improvement on my nailfolds capillaries. I have never had a NFC test completed by my doctor, but I have a 200x magnifier, and I know they are not normal.

The primary question I have is, should I expect to see an improvement on my NFC if AP is working for me?

Appreciate any advice.

[Maz]

Hi Kentucky,

I remember you as we talked about the AP provider in your state. As you mention, it is kind of interesting that your AP Provider suggested doxy and you may do very well on it. The time most folk think about assessing progress is at around the 6-8 month mark. Sometimes labs improve before symptoms and vice-versa. Sometimes symptoms regress and labs remain unchanged…which is not as much of a concern in the absence of damaging inflammation. There are many healthy people who have positive ANAs and these can be elevated as a post-reactive state for up to a year or more after an infection, for example. This sort of thing has been causing some confusion throughout Covid as many patients developed autoantibodies and the concern has been whether or not these folk may develop post-infection autoimmune phenomena.

There are so many variables with regard to response to standard rheumatic treatments and it’s no different for AP. Variables that may affect progress with AP include things like:

Disease type
Duration of rheumatic disease
Degree of severity
Gender
Age
Co-morbidities (e.g., thyroid imbalance)
Type of infection(s)
Type of AP being used
Environmental stressors (diet, stress, toxic exposures like heavy metals or mold, etc).

It can be a bit of a journey to uncover and reveal which variables may be at play. Some folk respond quickly, within weeks/months, and others may just be seeing a slowing down of the freight train in the first year or so. It’s worth reading the Scammell books and the Stories on the site to glean insight into just how individual each person’s journey can be. No one person is alike and it can take many years for the damage to the immune system to evolve prior to overt disease onset. As such, it takes time to wind back the clock and fit the pieces of the puzzle. It’s not uncommon for onset to occur out of the blue, right after a big life stressor, for example, such as, a death in the family, job loss, a car or other accident, a surgery and/or some type of triggering infection. However, it’s very likely the stage had already been set for some time.

There are AP remission stories from lupus patients who were prescribed Minocycline, and it’s clear that lupus doesn’t preclude this patient group, because lupus (the disease) and drug-induced lupus are two distinct and very different entities with very different etiologies. The main issue is that some folk with lupus folk tend to be a bit more tissue-reactive to antigenic stimulation so require individualized dosage titration to assist with tolerance.

Aside from LDN, are you doing anything supportive to help during this early phase (when herxing may occur)? Did your AP doc suggest a good quality probiotic?

[Kentucky22]

Hi Maz,

As always, I appreciate your response.

I had hoped that since I have started AP fairly early, I may have less layers of the onion to peel per say – but that may be wishful thinking. That is interesting what you mention about COVID, I have not researched that, but I will have to take a look. I really wish I knew what CTD I had, aside from being labeled as UCTD, I have tested every Ab of SSc that can be tested here in the US. There are two additional ones in Canada, but I’m not ready to explore how to send those off. I also tried an AVISE test for CTD’s/Lupus, which came back fine, but I think the lab was faulty, as they reported my Hep2 as negative, but ELISA as slightly positive. Then I retested with labcorp a few weeks later, and it reported what was previously reported months ago (high titer positive).

I actually purchased one of Scammell’s books (SSc one) and read it (as you had recommended this prior). It was a good read, and I did get some insight into AP through it.

From reading others experience, raynauds (which is one of my persistent clinical symptoms) doesn’t seem to get better with AP, or at least it continues to persist mildly in best case. The only thing I have currently to gauge AP is by my ANA levels and nail capillaries. I think LDN has helped my inflammation, and I am fairly strict with my diet and stay away from inflammatory foods, which I believe has helped too. CTD + PAH is scary, and when I saw my echo report, I decided it was time to stop sitting on the fence waiting for something bad to hit before I gave it a try.

For my AP, I started with 5 days of oral clindamycin, and am now on day three of Doxy (2x daily). I am taking 2x nystatin daily, and a megaspore probiotic (I usually take this twice a day as well). I am trying to do everything I can to make sure AP works, I am taking doxy in the morning (with a piece of toast) and wait a couple hours before eating breakfast so nothing can negate the medication. Then I also take doxy 2-3 hours after dinner to avoid any food interaction. I’m seeing an AP doctor out of Texas (virtually), she was recommended to me by someone I met through roadback on facebook who had been to many specialists in the US and said this doctor had been the most helpful. This AP doctor wants to evaluate labs after 3 months to determine if it is working or not. I believe if nothing has changed, I may ask to try mino for an additional three months – just to say I did. Hopefully, doxy works out for me though. I do believe I will push to stay on AP for at least a year, this was even the recommendation that Ed Harris has on his AP article.

My rheum wanted me to start taking plaquenil, and I considering starting this with AP, but my AP doctor thought that may be too many variables to introduce. I had read that the two can compliment each other, but have held off on that.

When you say anything supportive to help during this early phase, I am unsure what you are meaning?

Respectfully,

[Maz]

Hi Kentucky,

Do your best not to get too focused on labs, as these can wax and wane or simply disappear over time. While they are needed to confirm diagnosis, and they can be a useful guide to treatment efficacy over time, the main goal with AP is to achieve a remissive state and keep it there, and this takes time and patience. It feels like an emergent situation right at the outset (I recall feeling that way), but it can be tricky to confirm diagnosis for a while, especially where overlaps are involved. I think it was Pat Ganger’s story in the book when she described getting her SD diagnosis, but after being treated with AP by Dr. Brown and then later returning to the original doc was told that whoever diagnosed her with SD was wrong – it was in fact him!

AP is not a cure, though some may find they can taper from their AP and remain on a low maintenance dose or even sustain AP-free remission for years. Some don’t want to risk relapse, but others may prefer to be in remission for a good year or more before messing with a tapering trial. So, 3 months isn’t nearly enough time to determine success. Herxing can look like early worsening for some months as symptoms of die-off are like a disease flare. In effect, a herx is a medication-induced, controlled flare. Labs can also worsen during this time.

The small Mino in Early Diffise SD run by Trentham, etal., ran for a full year, but ideally, long-term studies would have provided better insight into things like efficacy, sustained remission, long-term tolerability, side-effects, etc., especially had there been more comparative arms in the study. E.g., studying mino alongside b-cell-inhibitors, methotrexate, etc, which are typically prescribed for life.

Regarding methods to support any herxing-induced flaring, Dr.K. will most likely be well-versed in things you can try, such an anti-oxidative supplements so it’s best to run anything by her. As you’re concerned about pulmonary involvement, you might like to research glutathione and N-AC (n-acetylcysteine). N-AC is a precursor to glutathione that is made in the liver, the body’s major detoxifying organ. Glutathione is a bit unstable, which is why it can be more efficient to take N-AC supplements, which are relatively inexpensive and over-the-counter. Given by IV to kids with cystic fibrosis, it serves as a mucolytic. Other useful supps to research for lung involvement are systemic enzymes, such as serrapeptase that has been studied for breaking down fibrotic tissue, and nattokinase for various benefits such as blood-thinning effects (some find it helpful for Raynaud’s). Other antioxidative supps are things like milk thistle, vitamin C, B-complex, grape-seed, non-denatured whey protein, etc. We’ve had discussions here about whether or not Vit C is okay for SD, because it helps promote collagen. Some say no, but others find it helpful. For lots of inflammation due to a flare, some find Alka-seltzer Gold quite helpful. Not forgetting flushing toxins with lots of good ol’ water and the lemon & olive oil detox drink.

What is becoming more evident is that the gut is closely tied with immunity and autoimmunity. Breakdown of the gut barrier leads to leaky gut, so that microbes that should remain the gut manage to migrate out and cause havoc; the immune system seeing them as foreign and some of their proteins looking like human ones (molecular mimicry). I was fascinated that scientists studying Otzi, the iceman’s genome, found Trepenoma denticola (oral spirochete), in his arthritic hip, and Lyme disease. So, learning how to rebuild one’s mucous gut barrier to prevent leaks through the gut lining’s microscopic tight-junctions, are worthy of study, plus ensuring dental health is well-managed.

Not to feel overwhelmed – rather, to view all this as “knowledge is power” in the context of self-advocacy, and this all takes time. Rome wasn’t built in a day, so to speak. In time, though, you’re going to become a lay expert in your own health!

[PhilC]

Maz wrote:

We’ve had discussions here about whether or not Vit C is okay for SD, because it helps promote collagen. Some say no, but others find it helpful.

I looked into this several years ago and found absolutely zero evidence that vitamin C is harmful for scleroderma patients, but I did find evidence that it’s helpful. It’s true that there are some people who say that scleroderma patients should avoid vitamin C; however, this appears to be based on the recommendation of one doctor who speculated that it might be harmful, and not based on any real data showing that it is.

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

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