Using AP for Scleroderma when Lyme is Negative

[lanolin]

Hello all.

I think that I have read all of the wonderful success stories about AP and scleroderma but as I have embarked on this AP journey, I cannot seem to ignore that most if not all of the stories I have read about AP being used successfully was when Lyme was also present. I do not have Lyme. I tested using Igenex. This makes me wonder if I am just not a good candidate and whether AP only works when these diseases are triggered by Lyme.

[JustDiagnosedChris]

I think as you would hear others say on this forum, that the mycoplasma/lyme infection is not necessarily the only cause of SD. The reason that AP works against Scleroderma is because it attacks the collagen. That’s the same reason why there are studies where they have treated patients with severe diffuse SD with Cipro and had results, because Cipro is also a drug that fights against the over-production of collagen. SD in essence is the body making too much collagen in our tissues. Whether or not it was caused by an initial bacterial infection is somewhat irrelevant once you have the disease. I have SD and also tested with Igenex. I am from central Massachusetts, born and raised in the woods and fields of New England. I have been bit by more deer ticks than probably anyone on this forum and I tested negative for Lyme. So, even as Dr. F. pointed out to me, that it seems that 9/10 patients who do the Igenex testing get some sort of positive tests back. He was actually surprised I didn’t, given my history and where I am from.

[JustDiagnosedChris]

And to add to that, AP is making an improvement with my condition, albeit slowly.

[Lynne G.SD]

Hi Lanolin;
Chris is right when he says mino prevents collagen.To make a long story short,mino inhibits an enzyme needed to make a protein that makes collagen.He is also correct about cipro but I would not touch it with a ten foot pole.Cipro is known to cause tendon/ligament ruptures and SDers already have enough problems there.
Hope this helps.Lynne

[lanolin]

Thanks Chris and Lynne.
Chris, from my understanding from my LLMD, lyme can “hide” and you can probably test positive later on. One never been bitten by any ticks and am not an outdoorsy person by any means.

[Maz]

@lanolin wrote:

Thanks Chris and Lynne.
Chris, from my understanding from my LLMD, lyme can “hide” and you can probably test positive later on. One never been bitten by any ticks and am not an outdoorsy person by any means.

Hi Lanolin,

I think you might find the following article very interesting in this context. It’s worth reading the whole thing, but if you just want answers on the Lyme testing part, this should answer what you’re looking for. Dr. F. is a wonderful rheumy and so supportive of AP, but he is not Lyme Literate and anyone suspecting Lyme or with documented positive Lyme serology, they should be seeing a LLMD to get assessed for all the tickborne infections and also to ensure adequate antibiotic coverage. I speak with hundreds of Lyme patients every year and it’s very clear that most do not test definitively positive by CDC or IGeneX criteria. It’s actually the opposite for folks with compromised immunity…they can’t mount a decent enough immune response to the infection, as described below in the excerpted material.

http://www.lymeneteurope.org/info/the-complexities-of-lyme-disease

The following is an excerpt that seems quite relevant to your question about testing:

Lyme Tests

There’s a Lyme test, so what’s the problem? There are several Lyme tests, but most of them are dependent on the body’s ability to make antibody against this bacteria. As we have seen, this may be a problem. There is the S-layer protecting the bacteria; the surface antigens are not readily exposed; there may be a blocking antibody; the bacteria might be inside a human cell; the bacteria might be down regulating the immune system through cytokines; the bacteria might have altered its antigenic appearance to fool the immune system; the bacteria might be cloaked in B-cell membrane; the bacteria might be hiding in joints, tendons, white blood cells, skin cells or the brain. Remember, if even just one spirochete survives, it could cause a relapse. Then there is another problem – the tests that detect antibody can only detect free uncomplexed antibody. (23,25,55,70)

When an antibody is formed, it is meant to latch on to something and never let go until it is destroyed. Like a lock and key, antibodies fit their associated antigens. Once the antibody attaches to the antigen it is no longer is a detectable antibody, because it has now become an antibody-antigen complex. This complex is not measurable using today’s commercially available tests. Also, as the amount of antigen increases, the amount of antibody can decrease, because the antigen will trap out the available antibody and sequester it. So, a person who has a bad infection but is making a limited amount of antibody can be overwhelmed by antigen, thus making antibody detectable only if you can detect the complex.

This means: People who have the worst infections may have the lowest antibody titers, and test negative. Note: It takes four weeks from the tick bite to test positive.

I’ve spoken to Tom Grier by phone and he’s one of the leading Lyme advocates in the US, brilliant guy, and holds a Master of Science. I was one of the cases described above….I had two distinct bulls-eye rashes (only 50% or fewer see a rash or the rash is determined to be something else as it isn’t a classic bulls-eye), yet my standard ELISA kept returning negative. My GP refused to run a western blot, because the CDC guidelines state a patient must test positive on ELISA before running a western blot, which is a slightly more sensitive test. I only squeezed out a positive on IGeneX IGG, with two antibody bands (30 and 41) showing up with one +. Hardly a result to scream to the hilltops…”it’s Lyme, it’s Lyme,” so the rashes were the only definitive proof I had in a conventional context. I was also extremely sick…so unwell, if I was a dog, they’d have put me down. My LLMD monitored my progress on abx therapy by testing both my RA disease markers (got worse initially and then started to come down) and my immune complexes (C3D), as he felt the latter was a more accurate gauge of disease activity and immune response to the infection. I credit this brave doc for saving my life, because the Lyme had got into my liver and yet, within a month of high dose combination abx, all my highly elevated liver enzymes had normalized. 🙂

This is a very controversial topic, but if you suspect Lyme, in spite of dodgy test results, it is not worth leaving any stone unturned, because untreated infections will leave a person sick. Minocycline alone is a miracle abx and, as the others described above, has incredible immune and disease-modulating effects, so keeping this as a core therapy, whatever else is being treated, is ideal…the best of all worlds.

[lanolin]

Thanks so much Maz. This was a more detailed explanation of what my doctor mentioned. Good read. I almost would be relieved to test positive for lyme since it would somehow help explain why I turned from healthu to sick but quite honestly, I would be shocked. I really have never been around ticks. I live in upstate ny but have only been here for about 9 years. I don’t do much outdoor things and have never suspected being bitten even once.

[Maz]

@lanolin wrote:

I live in upstate ny but have only been here for about 9 years. I don’t do much outdoor things and have never suspected being bitten even once.

Yes, I understand, lanolin. Very hard to believe if there has never been a rash or noted bite. My LLMD (considered one of the top guys in the US and internationally) once said to me that he believed everyone in my state had been exposed to Lyme at some point and that it’s almost impossible to live in the NE and not be. Many people have latent infection for decades and it never amounts to much or anything – there are over 100 strains of the beast in the US and 300 worldwide and what seems clear is that some strains are a lot less pathogenic to humans than others. It’s even more difficult to diagnose if it does emerge later with no sign of a recent tick bite. Nymph and larval forms are as tiny as the period at the end of this sentence and almost impossible to see with the naked eye…not to mention that it is believed that other biting insects are also passing the infection. I never saw the tick that caused my two rashes (abdomen and back), but have pulled a few off my scalp where I never would have noticed a rash. 🙄 Even if not an avid outdoors-person, ticks can be carried in on clothing, items brought in the house from outside, and pet fur. We had a few pets for years and I was continually finding ticks on bath mats where the cats curled up or on beds. At a wedding, a gent had a tick drop on him from an outside balcony when we were standing on a concrete patio…dropped by a bird? A plane was deboarded a few years due to ticks being found on a plane seat. Add to this that some ticks don’t carry Lyme, but do carry other tickborne infections that can leave one just as sick, makes this all the more complex. One isn’t allowed to donate blood if the person has had Lyme or another tickborne infection within the past year or so. How would they know, if they don’t have overt symptoms or testing has come up with a false negative? My gym trainer’s Mom was admitted to hospital for anemia and was given a tainted blood transfusion and had to be re-admitted as she became so ill. It took days and having her body packed in ice to keep her temp down before it was discovered she’d been passed babesiosis (a tickborne malaria-like parasite). It’s the enormous challenges of diagnosis and identifying what bugs could be creating havoc that makes this all so difficult for us, as just patients. In my humble view, it is far safer not to leave any stone unturned than to dismiss an opportunity to get well, but that is just the result of my own experience.

My best insight would be to just get as informed as possible and make the treatment decisions that make the best sense to you in your particular circumstances, as none of us can know all the variables of another. Wishing you every success in this and on your road back to full recovery!

[PhilC]

@lanolin wrote:

I do not have Lyme. I tested using Igenex.

A negative test result does not mean that you don’t have Lyme Disease. What it means is that they looked for the bacteria Borrelia burgdorferi (antibodies to the bacteria, actually) and didn’t find them, and that’s all it means.

When were you tested for Lyme Disease? Are you taking any antibiotics currently?

Phil

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

[lanolin]

Phil,

I am on minocycline. I tested negative for lyme using igenex. I got no indications from the test that there was any possibility of lyme.

[greypilgrim256]

Does anyone have a link to a study about Minocycline and collagen production? I know I have read something about it before but can’t seem to find any studies now.

[lanolin]

Oh and I tested 3 months after onset of symptoms.

[PhilC]

Hi,
@lanolin wrote:

I tested negative for lyme using igenex. I got no indications from the test that there was any possibility of lyme.

The test is not reliable enough to totally exclude the possibility of Lyme Disease when the result is negative. There are several reasons why that is so.

This is a good explanation of one of the major reasons:

“Most commercial tests designed to detect chronic infections are based on measuring your immune reaction

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

[Rio]

I too experienced the SD diagnosis for quite some time without a positive Lyme test. My ANA is always negative however, I have all of the signs of SD and Lyme. I too do not remember a tick bite yet, I am from an endemic area in MN. Regardless, my Fry labs came back positive as did my a portion of my IGENX. So it is a bit of a puzzle trying to solve the Lyme riddle.

Thank you for your posts!

Rio

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