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Why Sarcoidosis and Lyme

Read below for a very simple explanation. 

It appears that some people who have been diagnosed with Sarcoidosis possibly have Lyme disease. In Australia Lyme Disease is not a truly recognized  disease although many of us know it exists please take a  moment  to visit this website


Sarcoidosis Australia was conceived by Sue Sherratt from a chance meeting with a couple of women in her doctor's waiting room towards the end of 2011, which carried on to a chat over coffee. The coffee must have been potent because it fueled Sue to go home and create an online support group for people with Sarcoidosis, Sue's own diagnosis. One of the two women who shared Sue's coffee chat was diagnosed with Sarcoidosis and the other was looking more likely to have Lyme disease, so the group intended also to support Lyme disease patients. 

In one of those interesting quirks of fate, Sue was also found to have Lyme disease and the Lyme disease lady couldn't escape the possible-Sarcoidosis label. The confusion between Lyme disease and Sarcoidosis became a source of frustration and fascination at the same time. Hence, Sue's online support group decided to become an organisation and enter the fray to fight for all that was lacking in the medical system where Sarcoidosis and Lyme disease were concerned. 

Late in 2012, a committee was formed and in early 2013, the organisation became a charity. Sarcoidosis Australia is in the process of changing name to Sarcoidosis Lyme Australia. Their mission is to support patients and carers, provide information to and educate patients/carers/medical clinicians/governments and to fund research.

Unfortunately as of writing this Lyme is not truly recognized in Australia there are no testing mechanisms in place under our Healthcare System. To have these tests done overseas is very expensive and out of the reach for the majority of people who are not well, most who are not even able to work. This is a total injustice and seems unbelievable in our society today; especially when millions of dollars are wasted in our country by many who have the well being of its constituents at heart. 

The same goes for Sarcoidosis. This is one disease that remains a mystery. Although I do believe the mystery is slowly being unraveled. Most health sites discussing this disease report that 'The majority of patients with Sarcoidosis get over their illness within a year or two' This is so WRONG and NOT the case in the majority of people who are diagnosed with Sarcoidosis. 

I for one was told that I was over the disease that was in 1985. In fact I was far from over it and the same story can be heard over and over again in on line forums. In my case I have personally spent hundreds possibly thousands of dollars being sent to different specialist's for a myriad of conditions and complaints. None of these specialists ever made the connection that the problems I was facing could remotely be a cause of my having Sarcoidosis. I now know this is definitively the case and thankfully have found a GP who is helping me work through the problem with the help of antibiotics. I might add that this is not a quick fix but had I known about this in the early stages of the disease I would not be facing the problems I am now. However as previously mentioned I have also now been diagnosed with Lyme Disease - thank-goodness I took the antibiotic route for my Sarcoidosis. This has surely helped protect me to some extent. Although in saying this the journey is not easy and as we speak I am having an extremely rough ride. 

Please if any medical professionals are reading this please listen closely to your patients we are not all hypochondriacs

So the connection with Sarcoidosis and Lyme is simple. Some Sarcoidosis patients could possibly have Lyme Disease. Below is few articles concerning the relationship between Sarcoidosis and Lyme Borreliosis. Perhaps their is more to this story than we realize. At the moment it remains a medical mystery...... but I truly believe there is a connection and the more people I speak to with Sarcoidosis and Lyme I am more and more convinced. So Sarkies and Lymies we are in this together.

I've also read that Sarcoidosis can be Lyme-related

Ask Wayne Bowen, a NSW farmer, to describe his symptoms and he sighs. The list includes fatigue, stiffness, muscle twitches, pins and needles, sudden headaches and crushing pain, aching eyeballs, and "feeling like razor blades are slashing my heels". "I sound like a whinger, don't I?" he says.

Like many of the people Good Weekend spoke to, Bowen also suffers "brain fog" and memory loss and is highly sensitive to noise and light. A test through Australian Biologics, a private laboratory, found "something similar to" Borrelia valaisiana (a species of bacteria found in Russia and China) and Bowen believes he is also suffering from acrodermatitis chronica atrophicans (ACA), a painful skin condition associated with European Lyme disease.

Bowen has never been out of Australia, but he has been bitten often by ticks and three times developed the telltale bullseye EM rash. The diagnosis of ACA, and of Lyme, was made by Laurieton dermatologist Peter Mayne, but Bowen says he has yet to convince his specialists. They've dismissed the positive test as unreliable. Instead, Bowen has been told he has sarcoidosis.

He says, "Sarcoidosis seems to be a last-resort diagnosis when they can't find anything else. But I've also read that it can be Lyme-related. The lady who used to live next door also had it. Sarcoidosis is a one in 20,000 disease in Australia, maybe one in 10,000.What are the odds of the woman next door having it? If you Google 'sarcoidosis and rural areas', you find it's much more prominent there. You have to wonder, well, what's out in the bush?" Ticks, for one thing

The following is extracted from. Why did I get Sarcoidosis? Why me?

Here is an electron microscope photograph of the organism "Rickettsia" living in the granuloma of a sarcoid patient. The magnification is 84 000 times, so the image is over a million times larger than Doctors can see through their optical microscopes. Not only are the organisms healthy, they are replicating by dividing into two, just like a human embryo. These Rickettsia microbes are spread by ticks. This patient caught their Sarcoid from a tick bite, not from anything they inhaled.

Nilsson K, Pahlson C, Lukinius A, Eriksson L, Nilsson L, Lindquist O: "Presence of Rickettsia helvetica in granulomatous tissue from patients with sarcoidosis". J Infect Dis 2002 Apr 15;185(8):1128-38 [Medline]

Sadly, a certain class of microbes has learnt how to live in the very harsh environment of the granuloma. They can live and multiply in the very environment that is meant to kill and digest them. The body can still sense they are there, and the concentrations of the inflammatory chemicals increase to a point where the inflammation starts to become widespread. This leads to the hyper-inflammation of Sarcodiosis.

see: Presence of Rickettsia helvetica in Granulomatous Tissue from Patients with Sarcoidosis

Sarcoidosis Lyme Links see: http://lib.bioinfo.pl/find?field=Papers&query=Sarcoidosis+Lyme 

If this link does not work go to http://lib.bioinfo.pl  and type in Sarcoidosis Lyme in the search field and press enter - select papers

Also - http://lib.bioinfo.pl/find?field=PubMed&query=+sarcoidosis+lyme select Pub Med in your search

see: Seroprevalence of anti-Borreliaantibodies among patients with confirmed sarcoidosis in a region of Japan whereLyme borreliosis is endemic

The Relationship between Sarcoidosis and Lyme Borreliosis

1: Graefes Arch Clin Exp Ophthalmol. 1998 Apr;236(4):280-4.


Sarcoidosis is a multisystemic granulomatous disease of   unknown etiology, while Lyme borreliosis is a multisystemic disorder caused by Borrelia burgdorferi. The purpose of this study is to evaluate the relationship between sarcoidosis and 

The blacklegged tick (Ixodes scapularis), the ...

Lyme borreliosis in a region of Japan where Lyme borreliosis is endemic.


We determined the seroprevalence of anti-Borrelia burgdorferi antibodies as well as antibodies three Japanese Borrelia strains by enzyme-linked immunosorbent assay and dotblot assay using purified Borrelia-specific proteins in 46 patients with confirmed sarcoidosis and 150 controls (50 disease controls and 100 healthy controls) in Hokkaido, the affected region.


Fifteen patients with sarcoidosis (32.6%) tested positive for Borrelia spirochete in both assays, compared with two disease controls (4.0%) and two healthy controls (2.0%). The seroprevalence of anti-Borrelia antibodies in patients with sarcoidosis was much higher in the affected region than in the region in our previous study were Lyme borreliosis is non-endemic.


In a region where Lyme borreliosis is endemic, Borrelia infection may be partially associated with sarcoidosis

PMID: 9561361 [PubMed - indexed forMEDLINE]



The exact etiology of sarcoidosis has not been clearly defined. Genetic as well as environmental factors are thought to play a role in the disease process. Sarcoidosis is thought to result from exposure of a genetically susceptible host to specific environmental agents that the immune system is unable to clear effectively.

Environmental influence

Numerous geographically localized outbreaks have been reported and suggest the possibility of an infectious agent or shared environmental exposure as the causative agents. Infectious organisms, such as mycobacteria, can induce granulomatous inflammation.

Many organisms have been linked to sarcoidosis, including Mycoplasma species; Borrelia burgdorferi; Propionibacterium acnes; fungi, such as Histoplasma and Cryptococcus species; viruses, such as Epstein-Barr virus, cytomegalovirus, herpes simplex virus, hepatitis C virus,[8 ]and rubella; and numerous other organisms.

Noninfectious agents, such as aluminum, zirconium, talc, pine tree pollen, and clay, have also been implicated.

Genetic Factors

Familial clustering of cases has been reported. Monozygotic twins are 2-4 times as likely to have the disease as dizygotic twins.[9 ]

Certain HLA associations have been demonstrated; the most common allele found in sarcoidosis is HLA-B8. Other associated alleles include HLA-A1 and HLA-DR3.

Two genes that are commonly found in female whites were found to be associated with EN in a study of sarcoidosis patients: a variant in the promoter of TNF and a variant in intron 1 of lymphotoxin-alpha, an adjacent gene.[10 ]

Proposed antigens fall into 3 categories that include infectious, environmental, and autoantigens. The most common infectious agents implicated are Mycobacterium tuberculosis, Mycoplasma species, Corynebacteria species, spirochetes, atypical mycobacteria, Propionibacterium acnes, Borrelia burgdorferi, herpes simplex virus, Epstein-Barr virus, cytomegalovirus, coxsackievirus, rubella virus, Histoplasma species, Cryptococcus species, coccidioidomycosis, and sporotrichosis.

Environmental antigens implicated include metals (eg, zirconium, aluminum, beryllium), organic dusts (eg, pine, pollen), and inorganic dusts (eg, clay, soil, talc).

Heat shock protein has also been implicated.

The relationship between Sarcoidosis and Lyme Borreliosis

Sarcoidosis and Lyme

Br J Dermatol. 1991 Jul;125(1):68-70.
Periarticular fibrous nodules in Lyme borreliosis.
España A, Torrelo A, Guerrero A, Suárez J, Rocamora A, Ledo A.

Source - Department of Dermatology, Hospital Ramón y Cajal, Madrid, Spain.


Periarticular fibrous nodules have been described in patients with late-phase acrodermatitis chronica atrophicans (ACA) in the setting of Lyme borreliosis. We report the clinical and histopathological study of two patients with periarticular fibrous nodules and with Lyme borreliosis and discuss the relationship between these nodules and ACA.

[PubMed - indexed for MEDLINE]

A Study in China:

[Borrelia burgdorferi may be the causal agent of sarcoidosis].

[Article in Chinese]
Hua B, Li QD, Wang FM.

Naval General Hospital of PLA, Beijing.


Serum antibody to Borrelia burgdorferi was measured in 33 patients with sarcoidosis who were confirmed clinically and pathologically. The results showed that 81.8% of the patients were positive. In addition, a strain of Borrelia burgdorferi was isolated from a patient’s blood. Fourteen patients received ceftriaxone 2 g per day and/or penicillin 12 million per day and a patient received lincomycin 1.2 g per day. The antibody titer of the patients turned to normal level, their SACE turned to normal range, and chest X-ray findings were markedly improved in 3 cases after the treatment. According to the facts mentioned above, we consider that Borrelia burgdorferi may be the causal agent of sarcoidosis and sarcoidosis might be a special type of Lyme disease.

PMID: 1582344 [PubMed - indexed for MEDLINE]

A study in Japan:

Seroprevalence of anti-Borrelia antibodies among patients with confirmed sarcoidosis in a region of Japan where Lyme borreliosis is endemic.

Ishihara M, Ohno S, Ono H, Isogai E, Kimura K, Isogai H, Aoki K, Ishida T, Suzuki K, Kotake S, Hiraga Y.

Department of Ophthalmology, Yokohama City University School of Medicine, Japan.

Fifteen patients with sarcoidosis (32.6%) tested positive for Borrelia spirochete in both assays, compared with two disease controls (4.0%) and two healthy controls (2.0%). The seroprevalence of anti-Borrelia antibodies in patients with sarcoidosis was much higher in the affected region than in the region in our previous study were Lyme borreliosis is non-endemic.


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Well done ladies on sharing the knowledge!
Feel free to link or use info from website
Also, if unaware check out the Karl McManus Foundation for Lyme Disease in Australia or AussieLyme and LymeOz yahoo chat sites too.

22 August 2011 09:42
Subpages (2): Lyme Disease Submissions
Sarcoidosis Lyme,
22 Aug 2011, 22:26