Tourette Syndrome & Tic Disorders Support Group
This community is dedicated to those afflicted with a tic disorder. A tic disorder is one in which uncontrollable muscle spasms that can range from small annoyances to major disruptive occurrences. .
This community is dedicated to those afflicted with a tic disorder. A tic disorder is one in which uncontrollable muscle spasms that can range from small annoyances to major disruptive occurrences. .
https://tourette-syndrom.de/download/bts_lymediseasepresentingastourettesyndrome.pdf
"A boy at the age of 4 years developed a simple motor tic (blinking) that resolved within a year without treatment. At the age of 9 years, he developed multiple orofacial tics including shaking of the head, and several weeks later a vocal tic occurred. The tics became exacerbated under stress, as typically seen in Tourette's syndrome. Social disabilities such as loss of impulse control, social withdrawal, and worsened performance at school followed. He came to hospital 11 months after onset of symptoms...
The boy was treated with intravenous ceftriaxone 2 g daily for 14 days. The tics improved after the sixth dose, and after the tenth dose the tics resolved completely. His social skills returned to normal. Follow-up examinations showed no recurrence of tics or other neurological or psychiatric disorder. Serum IgG antibody titres and IFT tests against B burgdorferi were 11 U/mL and 1:32 after 1 year. Rapid efficacy of antibiotic treatment followed by a decrease in Borrelia-specific antibody titres suggests that the multiple motor and vocal tics were at least partially caused by the tertiary stage of borreliosis.
Persistence of the tics and increasing severity of the social disabilities over several months suggest that the first signs of a Tourette-like syndrome 11 months previously were an expression of an early Lyme infection. Infection with B burgdorferi should be considered in cases of Tourette's syndrome in endemic areas."
It might be possible that a number of different infections might cause tics/Tourette's if they share something that is recognized by the same antibody? There are also at least sporadic reports of Mycoplasma and Chlamydia pneumoniae
also detected in Tourette's patients, perhaps these are occasionally able to cause (or exacerbate?) tics/Tourette's?
I"m fairly sure I've seen or maybe already posted reports of resolving tics/Tourette's by treating Streptococcal infection with antibiotics as well, but the article on Borellia does stand out in my mind as dramatic - and helpful, since it also describes the patient's state a year later.
https://www.ncbi.nlm.nih.gov/pubmed/15527551
"An infectious/inflammatory process plays a role in at least a subgroup of patients with tics and Tourette's syndrome (TS). Successful antibiotic therapy and prophylaxis was described repeatedly. We report the case of a patient suffering from chronic TS who was treated with celecoxib additionally to the antibiotic prophylaxis. This treatment was associated with a continuous improvement of tics and disturbed behaviour, such as aggression and social withdrawal. The withdrawal of celecoxib led to a marked deterioration in TS symptoms while the re-exposition had advantageous therapeutic effects. This result of the treatment with a COX-2 inhibitor supports the view that COX-2 inhibitors show therapeutic benefit in patients suffering from psychiatric disorders in which an inflammatory process is involved in the pathophysiology."
Antibiotics have a role in PANS even with no infection
Publish date: February 9, 2017
By M. Alexander Otto
https://www.mdedge.com/psychiatry/article/131114/pediatrics/antibiotics-have-role-pans-even-no-infection
"...The first step at Stanford is to look for an active infection, and knock it out with antibiotics. Dr. Chang has seen remarkable turnarounds in some of those cases, but even if there’s no infection, “we still do use antibiotics.” There are positive data, “although not a lot,” indicating that they can help. Some kids even seem to need to be on long-term antibiotics, and flair if taken off long after infections should have been cleared.
“We don’t know what’s going on. We try to stop antibiotics if we can; if patients relapse, we think the benefit [of ongoing treatment] outweighs the risks. Some kids just have to be on antibiotics for a long time, and that’s an issue.” Perhaps it has something to do with the anti-inflammatory properties of antibiotics like azithromycin and amoxicillin, or there might be a lingering infection, he said at a psychopharmacology update held by the American Academy of Child and Adolescent Psychiatry."
All of this sounds very familiar to me since I also have the skin disease Hidradenitis suppurativa, which is infamous for confusion over the presence or the role of infections, and relapses when the frequently given antibiotics run out. There can be many reasons for that, but It may be that the target microbes in cases like that have become tolerant of certain antibiotics and are suppressed rather than killed by them, so that it looks like they've been killed until the antibiotics stop. We have had numerous authors theorize that there isn't infection present and the antibiotics must be having anti-inflammatory or immunosuppressive side effects, but we also have some excellent bacteriological studies that strongly suggest that infection is present after all.
It's a very important theme in discussing HS that just because a particular antibiotic doesn't give lasting results, doesn't mean there isn't an infection. Certain infections can also be very difficult to detect by certain commonly used methods so that false negatives may be common.
"If more than antibiotics are needed, Stanford considers targeting inflammation. Some children respond to easy options such as ibuprofen. Dr. Chang has seen some helped with prednisone, but treatment is tricky. There might be an occult infection, and PANS can present with psychiatric issues that prednisone can make worse, including depression and mania. Intravenous immunoglobulin is another of the many options, “but we really need about four treatments” to see if it helps.."
Probably the most dramatic thing that happened yesterday on the antibiotic was that for the first time I can think of, I was able to turn off my tics if I concentrated, whereas I have never been able to do that before, including with the guanfacine I've been for several weeks now, which has been a very mixed bag of things getting better and worse, depending on the hour or minute of the day and whether I'm standing (much worse) or sitting (much better). I think it's helping, but my tics/TS certainly aren't under management yet except for yesterday's short lived incident on antibiotics.
(I've read it can take 6-8 weeks before guanfacine works its best, but the doctor didn't seem to think it should normally take that long).
I know I've already posted this same thread about how antibiotics might help regardless of whether there is infection (this may only be hard to detect infection rather than absent infection), but if that were the case here it seems hard to imagine such "beneficial side effects" fizzling out so quickly.
I don't know, I read the post here about Taboos and started thinking about this, I don't know enough about this yet, but I've read that certain infections can alter people's behavior to do things they might not ordinarily do and I'm wondering if obscenity-related tics could be included, I think Toxoplasma infection, right or wrong, may be a suspect in some cases of people suddenly developing behavior that isn't typical for them such as gambling urges, for instance (reference near end of post).
(Toxoplasma is said to be able to change the behavior of mice and make them attracted to cats instead of afraid of cats, and to be able to do similar things with creatures more closely related to us such as chimpanzees, making them dangerously attracted to leopards instead of being afraid of them).
https://www.independent.co.uk/news/science/toxoplasma-gondii-parasite-that-breeds-in-cats-could-affect-human-behaviour-when-it-infects-people-a6861221.html
"A study of Toxoplasma gondii, which is estimated to be infecting around 1,000 people every day in Britain, has found that it makes chimpanzees more attracted to the smell of leopards, their main predators in the wild."
If I recall correctly, similar suspicions may have been leveled at certain medications that affect dopamine systems, such as certain drugs for Parkinson's Disease.
I don't know what to think to think of the idea, but there actually are several reports of evidence suggesting Toxoplasma infection in some Tourette's patients. (If an infection is causing my tics/TS, it may be Strep given the history I've had but that's only a guess, and guess is all I can really do if the doctor doesn't see fit to try to do a culture. I could note in case it means anything that's it's extremely rare for me to have cussing tics, usually it's just nonsense words).
Seroprevalance Anti-Toxoplasma gondii antibodies in children and adolescents with tourette syndrome/chronic motor or vocal tic disorder: A case-control study.
https://www.ncbi.nlm.nih.gov/pubmed/29554545
"Anti-Toxoplasma gondii antibody positivity was 5.827-fold higher in subjects with TS and 4.425-fold higher in subjects with CMVTD compared to the control group. Correlation was determined between a diagnosis of TS or CMVTD and Anti-Toxoplasma gondii antibodies."
The Relationship between Tourette’s Syndrome and Infections
https://openneurologyjournal.com/VOLUME/6/PAGE/124/FULLTEXT
"In addition to streptococci, several other infectious agents have been proposed to play an essential role in the pathogenesis of TS. Two case reports revealed that Mycoplasma pneumoniae might be associated with tic symptoms [19, 20]. This assumption was strengthened by a study that compared 29 Tourette patients to healthy controls regarding the Mycoplasma infection rates. The study found significantly more elevated antibody titers against Mycoplasma pneumoniae in TS patients as compared to controls [21]. Furthermore, an association between herpes simplex virus 1 and the exacerbation of tics was stated [22]. Also an acute infection with Borrelia burgdorferi presenting as TS was reported [23]. Our own group also identified infectious agents as contributing factors in TS: A significantly higher rate of TS patients had elevated antibody titers against Chlamydia trachomatis as compared to controls and trend towards a higher prevalence in the Tourette’s group was shown for Toxoplasma gondii [24].
Until now, none of these infectious agents has been linked consistently with TS. Thus a hypothesis is that infections do not directly cause symptoms of the disease, instead they could contribute to TS by triggering an immune response."
Association between intracellular infectious agents and "Tourette's syndrome.
https://www.ncbi.nlm.nih.gov/pubmed/19890596
"In conclusion, within the TS patients a higher rate of antibody titers could be demonstrated, pointing to a possible role of Chlamydia and Toxoplasma in the pathogenesis of tic disorders. Because none of these agents has been linked with TS to date, a hypothesis is that infections could contribute to TS by triggering an immune response."
Toxoplasma gondii infection and behaviour – location, location, location?
https://jeb.biologists.org/content/216/1/113
"In a mouse model system, T. gondii infection was found to generate sensorimotor deficits in animals without major brain damage or cognitive dysfunction (Gulinello et al., 2010). In addition to these links of T. gondii to schizophrenia, Parkinson’s disease and OCD, T. gondii has been associated with Tourette’s syndrome (P<0.07) (Krause et al., 2010) and a link with autism spectrum disorders has been speculated (Prandota, 2010). It is intriguing that dysregulation of dopamine has been implicated in all these disorders."
Parkinson's Drugs May Lead to Compulsive Gambling, Shopping, and Sex
https://www.healthline.com/health-news/parkinsons-drugs-may-lead-to-compulsive-gambling-102014
"As a paper it really isn’t telling us anything we didn’t know, it’s just reinforcing it. But it needs reinforcing because most physicians aren’t aware of the problem or underestimate the severity,” said Dr. Howard Weiss, an associate professor of neurology at Johns Hopkins University, who published a commentary that accompanies the study.
Dopamine receptor agonists were prescribed 2.1 million times in the last four months of 2012 alone. The drugs are a second-line treatment for Parkinson’s disease, after the dopamine replacement drugs levodopa and carbidopa. Dopamine agonists are also prescribed for other conditions, including restless leg syndrome and the hormonal condition hyperprolactinemia.
As many as 1 in 7 patients who take dopamine agonists experience psychological side effects, the analysis suggests."
I hope all this actually turns out to be a clue to some cases, although a person could predict some challenges if dealing with a disease that might have more than one microbial cause, which flies in the face of one of "Koch's postulates" about "one microbe, one disease".
As beloved as they may still be to some people in medicine or biology, Koch's postulates are rather dated - they were published in 1890 if I'm not mistaken - and we have learned whole libraries full of things about medicine and biology since then that Koch obviously could never have dreamed of. People were beginning to question Koch's postulates as early as the 1950s, yet somehow researchers still seem to have to struggle against them in trying to establish microbial causes for diseases.
https://en.wikipedia.org/wiki/Koch%27s_postulates
Perhaps there is hope of treatment though in spotting other signs of a particular infection rather than emphasizing what may be a controversial association. My doctor might be a case in point, he gave me antibiotics because I have such obvious signs of skin infection, whereas he might never give me antibiotics because I have TS in a million years, no matter how much research I can quote at him (and it's probably never going to be much in a 15 minute visit).
As always, finding a particular infection in a majority of patients with a particular diagnosis but not in control subjects may not prove beyond doubt that a particular infection causes a disease, but it may at least hint at a plausible presence of an infection that may not be healthy to leave untreated, and we seem to see these kinds of findings over and over in a number of diseases, and that is often my question - since they report finding evidence of infection in a majority of patients, did they try to treat the infection, and if so, what happened?
There are some success stories out there from when researchers have tried to do just that, with numerous medical conditions.