SD, Lupus, PM and DM Correlated to Lyme in 1988 by "Expert"

[Maz]

As many are aware, Lyme disease was first discovered in Lyme, CT, when an inordinately large cluster of children in one neighborhood began developing Juvenile Rheumatoid Arthritis. Adults, too, were coming down with various rheumatic manifestations of the disease, including RA and Lupus. The CT health dept was contacted by a concerned mother, Polly Murray, who then got rheumatologist, Alan Steere, on board to look into the matter. It wasn’t long before a patient showed up in his office with a bulls-eye rash and tick in hand and a connection to this mysterious infection was made. At first, Steere thought it was a virus, but later, Willy Burgdorfer identified the offending pathogen as a spirochete, and the bug was dubbed Borrelia burgdorgeri, or Bb, for short, and named after him. Nevertheless, Steere is still (mistakenly, in the opinion of many) hailed as the “discoverer” of Lyme disease.

This discovery led Steere on a path of research and some of his early finds are quite fascinating to read, including the following study summary published in 1988 where Duray and Steere discuss the various late stage rheumatic manifestations of Lyme disease, including Scleroderma, Lupus, Polymyositis and Dermatomyositis.

http://www.ncbi.nlm.nih.gov/pubmed/2847622

It is pretty disheartening to learn that the devastating immunological effects of Bb were known so early on by the so-called “Lyme experts” (who now deny a chronic form of Lyme disease) after this infection’s discovery and yet -even today – patients are told, but your rheumatic disease can’t be caused by an infection! 😯

The final line in the study summary says it all:

“All of these histologic derangements suggest immunologic damage in response to persistence of the spirochete, however few in number.”

Tick season is in full force up in the northern hemisphere as we are now well into Spring. Take care to take all necessary precautions to avoid tick exposures while outside and to check pets bringing them into the house. The nymphal forms of ticks are as small as the period at the end of this sentence. Unfortunately, its the ticks we don’t see that mostly cause the problems.

[cavalier]

I LOVE this Maz! Of course you & I can see the connection – only one doctor has so far & he is a biologist & physicist type doctor – not a MD although he is a trained Chinese doctor. He has many degrees Dr Chi is who told me for sure it was the Lyme that caused my Scleroderma & I think only one MD has seen the correlation cant remember who now. 😉 To me I just know my body & seen how I went from being healthy to when Lyme hit & then the cascade over time to my immune and subsequent SD. Of course other lesser players involved can contribute to the picture but I have always felt I need to get Lyme under control well before i can get the SD in remission! It maybe they are just one & the same but a stage of where the Lyme is at.

I wonder if stage 3 Lyme is the final stage or if there is a 4th stage? Obviously the further down the pike one is the worse/ more serious for regaining ground. Too bad 99.9% of all doc’s who treat Lupus & SD dont have a clue even when the patient like myself tell them they have a CDC positive case of Lyme I am told that has nothing to do with it – any doc worth their grain of salt using common sense should at least realize that if nothing else Lyme causes disarray of the immune system & it should matter if they are going to try to get better control of the disease! My Igenex test showed how much simply because I was on AP for a bit then went off AP for 60 days while doing HBOT & then got tested again for Lyme – prior to that I was on AP when the lyme test done before that was done & it was inconclusive as they said something was in the way of their getting a reading. 2 tests done earlier on both showed a very low positive reading which to me meant enuf to warrant treating – my doc disagreed saying it was not enuf to worry about. I think positive low is enuf to worry about. I think it just didn’t show as sometimes the degree is not seen when it’s chronic. I never think & neither does Dr C. there is no such thing – as a low level of Lyme.

I so wish doc’s understood & were aware of this article! I firmly agree. Could save alot of suffering & issues for so many of us. It’s so hard to try to climb out of this mess when so much time has elasped & harm but … i am believing while hard it’s still hopeful.

Best – Jill Lyme SD CPn. Candida is on the wane.

[EJ Kirksey]

cavalier: You mentioned a Dr. Chi. Is that a doctor in Little Rock, AR? I know of a Dr. Chi at Ortho Ark. all: I had a severe kidney infection about 4-5 years ago caused by E-coli and I also was flea bitten several times on my stomach that same summer. Could this have caused my immune system to fail and me to get PM and Osteoarthritis? Would could have resulted from these two events happening? Everyday doctors all want me on prednisone. I want to get better.

[cavalier]

EJ – Hi the Dr Chi i am referring to is a PHD & a Naturopathic doctor he is located in Calif. he is the person who has made the chinese formulas known as Dr Chi such as oxypower & asparagus etc formulas.

Fleas by themselves can really cause havoc with the immune system – something that is typically overlooked by most doc’s they are indeed vectors for diseases and some doc’s see them as a potential carrier for Lyme as well as viruses. Typically it’s not unusual to see a outbreak of something viral at times with flea bites. Certainly a load to the system & then one can wind up fighting a infection – it’s all a cycle that is started by a tipping mechanism & if things spiral certainly one can see how then you become suspectible to one or more diseases or conditions to then start. The immune system can only handle so much compromise & at one time – in my opinion. Reducing the load is i feel crucial so as to allow the immune system to recover & rebuild – once you have a disease I feel you will always have to take extra care. We make a new body every year so we do have the ability to impact how well that body is made or how poorly.

Do you like this Dr C. in Little Rock? & what specialty is he? The reason i ask is I live in Memphis & we are considering a small place over by Hot Springs for the pollution & air quality is better there than here – Memphis is #1 in being the worst for allergies & I have a hard time breathing here come warmer weather. The winters here i hurt summers I dont hurt as much but I cant breathe due to my Pulmonary hypertension & asthma & heart failure it’s just too much. It would at least allow me to be able to drive there it’s close enough to get away from this sometimes as well as Hot Springs has low levels of Radon Hot Spring water that is so beneficial for me that i can get from their fountains & get to their bath house once in awhile. It would be a place we could eventually retire too.

Always good to know of a good doc.
best – Jill SD Lyme CPn & Candida

[Maz]

@cavalier wrote:

I wonder if stage 3 Lyme is the final stage or if there is a 4th stage? Obviously the further down the pike one is the worse/ more serious for regaining ground.

I so wish doc’s understood & were aware of this article! I firmly agree. Could save alot of suffering & issues for so many of us. It’s so hard to try to climb out of this mess when so much time has elasped & harm but … i am believing while hard it’s still hopeful.

Hi Jill,

I think the reference in the article to Stage 3 Lyme was based on the classically-described three stages of: early localized, early disseminated and late persistent stages, as follows:

http://www.webmd.com/a-to-z-guides/stages-of-lyme-disease-topic-overview

In the late 80s when the above study was published, there was still a lot to learn about Lyme (as we all, know, there still is!), as it had only been identified by Burgdorfer in 1982, so there wasn’t much in the way of clinical experience to observe and classify the disease, so these classifications may have evolved a little more over time as the diverse destructive nature of this devastating infection has become more and more evident. What is perhaps equally devastating (for patients) is the damage that scientific politics has subsequently done more to shape the landscape for diagnosis and treatment (or lack thereof) than actual “unadulterated” evidence-based medicine.

Jill, your journey of discovery is such an inspiration to others in terms of what you’ve conquered and what you continue to conquer in your dogged determination to find wellness again. Thank you for sharing your story above. It can be so hard for anyone new to this topic to get their head around why it is so darned difficult to actually get a diagnosis of Lyme and appropriate treatment…and then to actually have to pay out of pocket for it!

[cavalier]

Even now 99.9% of all doc’s when you tell them you are CDC positive for Lyme dismiss addressing this at all – it’s as if you never said the words. 🙄 One would think once you finally have the results it would get easier but you have to dog this constantly meaning be on the trial with your nose to the ground looking for your own clues & help to bring to what few doc’s who will deal with this.

Maz that is very kind of you to say but if anyone is a inspiration it’s you my dear. 😀

Best – Jill SD, Lyme Cpn. Candida on the wane but still something I keep watch on.

[Maz]

@cavalier wrote:

Even now 99.9% of all doc’s when you tell them you are CDC positive for Lyme dismiss addressing this at all – it’s as if you never said the words. 🙄 One would think once you finally have the results it would get easier but you have to dog this constantly meaning be on the trial with your nose to the ground looking for your own clues & help to bring to what few doc’s who will deal with this.

Thanks, Jill – you’re a doll! 🙂

I’ll ditto your words above! There is something very strange about all this and any doc who runs a lab test and then tells you it’s a false positive. Why run the test, at all? And, if it’s positive, how in heck can they decipher whether it’s a false positive or not? Are they psychic or something? Why even use a test that is that inaccurate??? 😕

[Lynne G.SD]

Hi Girls;
This was posted on the Inspire site and thought you would find it interesting.
http://www.jbc.org/content/288/12/8468.abstract

[mary77]

Jill and Maz,
I am a LONG time Lyme/RA sufferer…31 years. The first 10 years were undiagnosed, therefore, not treated. I was in severe pain 24/7, fatigued beyond understanding and completely hopeless. Bizarre symptoms came and went. I had a history of a known tick bite…small and very engorged on my scalp. My visits to various “specialty” doctors (mainly cardiac and rheumatic) left me with no answers. I am amazed that Dr. Steere wrote your link (Maz)in ’88…and we are all still in this place of seeking understanding physicians. But the politics have definitely interfered and Dr. Steere has done a dis-service to us.

As Jill states, we have to make this a mission to receive appropriate help. It is hard work, especially when one is ill. I have recently had Cpn tested and have extraordinarily high titers. I have also tested positive for mycoplasma pneumonia. Not surprising that we tend to accumulate infections when our immune system is waging a war.

The bright light has been AP…currently a triple antibiotic approach. No conventional “autoimmune” drugs ever helped me…in fact, they worsened my condition horribly. Patience and persistance is key to success with the AP. The support offered here is amazing and the treatment discussed is REAL. I pray that someday AP will be taught in medical school. We all deserve medical care without the battle we face.

Sorry to get on my “podium” but the link to Steere’s work made me reflect on my life! Thanks for posting it, Maz. Thanks to all who generously offer their help to others through this website!
Mary

[Maz]

@mary77 wrote:

I had a history of a known tick bite…small and very engorged on my scalp. My visits to various “specialty” doctors (mainly cardiac and rheumatic) left me with no answers. I am amazed that Dr. Steere wrote your link (Maz)in ’88…and we are all still in this place of seeking understanding physicians.

Mary, thanks for sharing your story. Mine mirrors yours so closely. Seeing the 1988 study by Steere caused my heart to leap into my throat and actually brought tears to my eyes…that the devastation wrought by these bugs was known so early on and the later retractions and denials. The last sentence of that article summary really says it all.

[cavalier]

Mary – your story is hard to read as it is unfortunately not unique – there has been such a wake of suffering & lifes as well as bodies left behind it’s more than unsettling. If it’s not us ourselves it’s someone we know. It’s so much harder to climb out of a hole than to get in it, a a poster i see at a doc’s office. It’s a darn pity doc’s dont react & keep us from getting into this hole to begin with – i see little harm in treating proactively for a suspected case of lyme, when one has had a tick a bit of precaution is worth it. Heck doc’s & vets give ABX for sinus infections or some general infection & dont think a thing of it, but if it maybe Lyme they can argue with you about it. I still remember 8 yr’s ago pleading with my doc to then just consider this a sinus infection whatever just please give me ABX as I am really sick & it started with pulling off a tick with a red ring rash around it – but nope – I try to not
think about it as nothing i can do to change the past only today & somewhat tomm. can i change. It’s a travesty!

Jill SD, lyme, CPn & Candida

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