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I talked with someone today who knows a leading Dr. and dermatologist in Scleroderma. She asked them for me about the antibiotic protocol and the dermatologist told her that it only worked for people diagnosed in Europe because of the strain of the infection. Does this make sense to anyone?
It has definitely NOT changed my mind about getting Ryan on AP tomorrow, but I was wondering where they would hear something like this.
Sue — Ryan's Mom
[user=1274]luvmywonderfulkids[/user] wrote:
I talked with someone today who knows a leading Dr. and dermatologist in Scleroderma. She asked them for me about the antibiotic protocol and the dermatologist told her that it only worked for people diagnosed in Europe because of the strain of the infection. Does this make sense to anyone?
It has definitely NOT changed my mind about getting Ryan on AP tomorrow, but I was wondering where they would hear something like this.
Hi Sue,
I'm wondering what this person might be talking about, too, because the mainstream haven't acknowledged an infectious cause for scleroderma!
Could this dermatologist be talking about scleroderma that has been found to be caused by Lyme disease? This case study that came out of Europe (Austria) in 2005 found a link to systemic scleroderma and Lyme:
http://www.ingentaconnect.com/content/bsc/jdv/2005/00000019/00000001/art00015?crawler=true
What this dermatologist might be saying, if this is the case, is that European strains of Lyme don't affect those of us in the US. Unfortunately, this is now being found to be entirely incorrect. Stony Brook has found that some very virulent European strains have been in the US for at least the past couple of decades. If I can find the link, I will edit this post to add it.
Sue, glad you haven't changed your mind about AP based on this. Even if one doesn't believe infectious causes, minocycline has very important disease modifying properties for those with scleroderma….and is very safe. 😉
Peace, Maz
PS. Sue here is the link to the Stony Brook findings on virulent strains of Lyme. I can't find where it says they are European in origin from this article, but will keep looking in the next few days. It might have been on CanLyme where I read this.
http://www.rbfbb.org/view_topic.php?id=2165&forum_id=1&highlight=stony+brook
This was posted the other day, including the work of Dr Franks at NYU, but you may have missed it, Sue. This NY researcher seems to disagree with the leading scleroderma dermatologist you mentioned above and might be worth contacting for further info:
http://www.canlyme.com/gestational_lyme_cardiac_gi_tract.html
“Morphea and Lyme Disease: Are They Related?
Morphea is a rare and untreatable dermatologic condition characterized by thickening and induration of the skin from excess collagen deposition. There are at least 5 forms of the disease: localized, generalized, guttate, linear, and coup de sabre (an indentation that can extend to and damage the underlying muscle and bone). The cause is generally not known, but as with any idiopathic condition, proposed etiologies abound, including radiation damage, autoimmunity, infection, vaccination, trauma, and genetic predisposition. One of the leading infectious disease candidates in the pathogenesis of morphea is B burgdorferi, although this association is a subject of controversy.[1] A number of European studies have found a correlation, while most US studies, including a frequently cited study from the Mayo Clinic,[2] have found no evidence of B burgdorferi in morphea lesions.Andrew G. Franks, Jr, MD,[3] of New York University School of Medicine (NYU), believes there is a connection between the 2 diseases. For instance, it can be difficult to differentiate between EM and certain morphea lesions, especially if the EM lesion is not the typical bull's-eye with central clearing. The differential diagnosis for EM-like lesions is varied and can include spider bites, herpes simplex or zoster, cellulitis, fungus or tinea, granuloma annulare, drug eruption, erythema multiforme, and subacute lupus erythematosus. In many cases, it can be difficult to culture B burgdorferi from EM lesions.”
So, there appears to be controversy in the mainstream about whether European strains are present here in the US. However, there is also controversy about whether Canada has Lyme disease and the degree of its prevalence, too…lots of denial in all corners. This is pretty bizarre, considering that deer, birds, lizards and other wildlife that carry these infections and the insect vectors that pass these infections back and forth don't hold passports! It also doesn't account for populations going on vacation to various parts of the world nor for exotic animals being imported into the US. To adamantly state that Lyme doesn't exist in certain countries, let alone that different strains found in certain parts of the world can't arise in other parts of the world is jaw-opening and just plain bad science.
Even this French study, though commenting that European and US strains seem to manifest differently, the dermatological presentations of Lyme are still under debate as a whole. So, it is arguable that this scleroderma specialist is erring on the side of it doesn't exist until it exists in the textbooks and that “absence of evidence is evidence of absence.”…rather than “absence of evidence not being evidence of absence.” That is to say that something may well exist, but we just haven't identified it yet.
http://www.ncbi.nlm.nih.gov/pubmed/17391884
Interestingly, 56 strains of Bb sensu lato have been found in the southern US:
The jury may be out in terms of mainstream agreeing with Lyme Literate physicians, but the main thing is that antibiotics work for scleroderma. 😀
Peace, Maz
Sue, found the article!!! (posted originally by Joe M) This study was reported in the July 2008 issue of the CDC's Emerging Infectious Diseases and the scleroderma expert might like to see this.
http://www.webmd.com/news/20080609/bad-lyme-bug-spreading?src=RSS_PUBLIC
“Qiu and colleagues found that the ospC type A strain is the most widespread strain in the U.S. It's also widespread in Europe. That was a surprise, as Lyme disease spirochetes in Europe are spread by different ticks and harbored by different animal hosts than in the U.S.
“What is surprising is these ospC type A strains in the U.S. and in Europe are genetically almost identical,” Qiu says. “So this type is quite unusual in its ability to colonize new habitats. … This is very strong evidence for this type having a very broad ecological niche in terms of the species that can carry it.”
“This means it went from one continent to another continent relatively recently,” adds Luft. “And it means that, as Europe and U.S. have very different ecosystems, this strain is highly adaptable to new environments. … This makes it a formidable foe — and it causes significant disease.
It's not clear whether this bad Lyme germ traveled from North America to Europe or vice versa. And it's not clear when this happened, although it seems to have occurred in the last 200 years, possibly when a tick-infested bird crossed the Atlantic.”Studies like this really can't be denied…trouble is, the specialists are ignoring these recent findings or just haven't done the research. The result is that this misinformation just keeps getting perpetuated. You have this article now if anyone says the “European strains of Lyme aren't in the US.”
The other thing of note is that when the standard Lyme tests were originally devised, they only included antibodies that were “statistically significant” in the US. However, this means that a good proportion of very unwell people are being missed by these very narrow testing parameters. 🙁
Off for mother's day dinner out, but wanted to find this info for you, Sue. I may be off track if this is not what this sclero expert meant, but hope it may help in some way.
Enjoy your Mother's Day!
Peace, Maz
Thanks Maz! Am I understanding all this, IF he had/has Lyme disease, that would explain his morphea/scleroderma and the infection would be caused by Lyme. What if he does not have Lyme?
Do you always see the target when someone is bit?
I think that dermatologist was speaking about scleroderma and not really considering Lyme at all but I have not spoken with her so I am not sure. The Dr. that is some sort of specialist in Scleroderma is in Philadelphia and the dermatologist that said that antibiotics are helping scleroderma in Europe is in Ft. Lauderdale.
Sue
Sue It works in Australia with a Minomycin as we do not have the correct one you use over there.
This would confuse patients.
As usual the earlier you get it the better of course.
Sorry to put in my two penneth but I thought it might help someone in doubt.
I appreciate all input — I do not really know what she was talking about except for the lyme association. In that case her statement would at least make some sort of sense considering the different strains, but I do not have any idea how this relates to scleroderma UNLESS he also has Lyme — the original Lyme tests came back negative, but I know listening to Maz that they are not accurate. Still, the dermatologist is wrong, even if she was talking about Lyme!
As someone else said on this board, we know more than the doctors that treat us!
Sue
[user=1274]luvmywonderfulkids[/user] wrote:
As someone else said on this board, we know more than the doctors that treat us!
Sue, that is probably the sad truth until you get to the right doctor.
For me, it was the Lyme doctor who says Lyme can mimic or cause any disease. Lyme triggered my SD and RA. Interestingly my doctor's protocol uses either Minocin or Doxy for the first abx, then many others, so there is some overlap in treating both. As with anything else the only thing that makes sense is to fight the root cause and not the random symptoms.
Knowing what I know now, if Ryan were my son, I'd get the basic Western Blot by Igenex Labs done a.s.a.p. You can order the test kit from them yourself, but your doctor has to sign the form and agree to receive the results (they won't send them directly to you). The kit is just two empty vials that you can take to a lab and them mail them back yourself with the signed forms. Read the instructions because you have to have the blood drawn Mon/Tues/Wed so it can be returned to them during the week and not sit in a warehouse or truck over the weekend. If you tell your doctor you don't need him to even interpret the results he might be more willing. We can help you interpret, then if Lyme is in the picture help you with locating a LLMD.
My SD and RA got somewhat better with Minocin/Clindy/Zith, but didn't get much better until I got into the Lyme protocol.
You're making great progress, Sue. 🙂
kim
Kim,
He had the Lyme IgG and it came out <0.80 and the IgM and it came out < .89 -- I went to the Igenix website a while ago -- do I need to reorder these tests as well? Also, would you always see the tick target if you were bit? I have never noticed anything like that on Ryan.
[user=1274]luvmywonderfulkids[/user] wrote:
In that case her statement would at least make some sort of sense considering the different strains, but I do not have any idea how this relates to scleroderma UNLESS he also has Lyme
Sue, it's true that it's not known if your son has Lyme, but what is strange is this doc's reference to saying,
“…it only worked for people diagnosed in Europe because of the strain of the infection.”
Can't imagine any mainstream physician admitting that infectious causes – even if she didn't mean Lyme – could be at the root of scleroderma, but only in Europe??? That makes no sense that Europeans are the only ones predisposed to infectious causes – any infectious cause – for scleroderma. We only have to look at how Bird Flu has spread right across the world to know that infections aren't limited to certain populations behind invisible borders drawn on a map. Of course, Lyme is passed by insect vectors, which would slow cross-infection to humans and this would make associations to insect-borne infections harder to establish, but even the Web MD news article above said that it wasn't known when this more virulant strain of Lyme became prevalent in both North America and Europe:
“And it's not clear when this happened, although it seems to have occurred in the last 200 years, possibly when a tick-infested bird crossed the Atlantic.”
Sue, you asked above:
“Am I understanding all this, IF he had/has Lyme disease, that would explain his morphea/scleroderma and the infection would be caused by Lyme. What if he does not have Lyme?”
Yes, even if Ryan doesn't have Lyme, AP works for scleroderma. Minocycline has many disease modifying properties that slow down and halt progression.
The reason it would be important to establish if it is Lyme or not is because of the possible coinfections that go along with Lyme (which might need separate treatment – see this link: http://www.turnthecorner.org/tick-borne-disorders.htm).
Initially, though, if Ryan's AP doc gets him on minocycline asap, this would be the most important first step. See how he goes…if you find down the road that he is not responding to minocycline, then might be the time to look more deeply into Lyme.
Dr Brown felt that mycoplasma was at the root of rheumatic diseases and so it wasn't just the disease modifying properties of the tetracyclines that were so beneficial, but their antibacterial bacteriostatic properties, too. The fact that Lyme has been documented to cause some cases of scleroderma is important from the angle that there has been so much denial about any infection that might cause it….not forgeting that various strains of mycoplasma that cause various arthritides have also been found to be passed by ticks.
“Do you always see the target when someone is bit?”
Unfortunately, no. If you go to this link – the Turn The Corner Foundation has an impressive medical advisory board – it says:
http://www.turnthecorner.org/lyme-disease-quick-facts.htm
“Lyme disease may be difficult to diagnose because many of its symptoms mimic those of other disorders. In addition, the only distinctive hallmark unique to Lyme disease, the “bulls eye” rash, is absent in almost half of the people who become infected. The inadequacies of today's laboratory tests make proper diagnosis difficult, and it can be extremely troublesome to treat the infection in its later phases.”
I think you mentioned that Ryan was seeing his AP doc today, Sue? If so, hope the appt goes well and you've got his mino script in hand to get him started.
Sorry for the length of these posts, but it's such a complicated business and hard to share in a few short lines. 😉
Peace, Maz
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