What I found during research that may help others - Minocycline


#21

This is great news! Is minocycline a vitimin?


#22

More info on Minocycline:

and research on it in relation to schizophrenia:

and

and


#23

Incidentally - for anyone interested in the tie in between the immune system and schizophrenia - there is an interesting new story in New York Magazine - its a combination of a family story combined with a review of the latest science in this area:

A Windblown corridor—so frigid in early March that the road turns bone white with ice crystals—separates the glass tower that houses Beth Stevens’s laboratory from Harvard Medical School’s Department of Genetics. In 2010, largely unaware of Stevens’s studies on synapse pruning, Steve McCarroll, a geneticist, became fascinated by the genetic association between schizophrenia and the immune system.

McCarroll, a disarmingly boyish forty-five-year-old, develops tools to understand human genetics. He is the archetypal fox to Stevens’s hedgehog: where Stevens has spent a decade gnawing at the roots of a single question—how and why synapses are pruned in the brain—McCarroll roams widely, inventing new techniques for studying genes that can be applied across a range of biological problems. “I study how variations in the human genome can produce the fascinating biological variations that we see among humans every day,” McCarroll told me. “The link between the MHC region and schizophrenia was one of the strongest links in psychiatric genetics. But it was also the most puzzling: Why was an immune-response region so potently shaping the risk of a mental illness? What was the connection between the immunity and schizophrenia?” McCarroll assigned the problem to Aswin Sekar, a twenty-four-year-old student in his lab who was working toward an M.D.-Ph.D. at Harvard. “Geneticists considered it an almost intractable problem, but Aswin wanted something substantial—a real puzzle to crack.”

Read the full story here:


#24

im so happy your sister is improving this is really exciting human studies have already been done with people in early stage sz but your sister has had this since age 18 so its definately late stage sz for her … i think the research scientist who did this human study would be very interested in hearing about your sisters positive experience study was done 2 years ago in China click on " author information " and it gives the researchers email address so you can contact the research scientist who conducted the experiment

http://www.ncbi.nlm.nih.gov/pubmed/24503176


#25

Good idea. Its sometimes helpful to share info with researchers in areas like ours (sz) - because it can help the researchers plan additional studies.


#26

Minocycline is a “tetracycline family” antibiotic…the only antibiotic that actually penetrates the blood brain wall barrier and reduces inflammation…which has been really helping people with schizophrenia all over the world. There have been many trials all over the world and minocycline has really proved to be helpful in decreasing paranoid delusions and voices for people with schizophrenia. I went to my sister’s doctor (psychiatrist) armed with all kinds of proof what it’s been doing (after many hours of research) and she agreed to try it on my sister, but she didn’t think it would help my sister. Well, she was wrong, and it has been very, very beneficial to her. She is even taking just 200 mg./day of clozaril (down from 600 mg at one time) with the 200 mg per day of the minocycline, and she’s improved so much it’s unreal. She got a little worse at first, but that’s normal…she just kept taking it, and now, she has told me the voices have becomes much less loud and intrusive in her life. she’s only been on it for 3 1/2 weeks, and at her doctors appt. this past Friday, I could tell her doctor was pretty surprised and amazed.


#27

You are so right. My sister has been suffering the absolute worst schizophrenia since suddenly overnight at age 18. She is 54 years old now, and finally, due to just being on the minocycline for 3 1/2 weeks, she has show vast improvement…she called me this morning and said again…“Melody, I am feeling so much better! The voices are so low, I can barely hear them!” For whatever reason, our pysychiatrists in this country have not gotten the memo…worse yet, they’re being sheltered from the info due to big money drug companies. I have been keeping a diary…and talking to her every single day many times a day, and the improvement over the last week is so amazing. We need to all look out for the weak/sick people and spread the word. And this bologna how minocycline provides “temporary relief” I call bullshit! There is nothing out there showing that the illness’s severity returns. Lets keep fighting for those who suffer. For my sister, I finally have some hope that she will have a less tortured life.


#28

Hi again. I’m not a psychiatrist. I am the mother of a son with sz. I think what you say is very interesting and true - I do believe that infectious agents play or can play a part in much mental illness. I have thought of getting my son tested for toxoplasmosis, etc. However, my sons life has not, so far, been ruined by his illness. He is on an anti-psychotic, responds well to it and is living a relatively normal life. But I am thinking about what you are saying. There is other evidence that drugs with an anti-inflammatory effect can reduce the symptoms of sz. Also for example, acetaminophen can work as a mood stabilizer. However, its side effects are as bad or worse than lithium so it is not widely used. Useful to know in an emergency. In my sons first ‘florid’ episode, it was simple aspirin that pulled him out of the land of ‘word salad’. But it didn’t last, and he rapidly became psychotic again.

I think there is lots of evidence for an autoimmune link with sz. Type 2 diabetes, lupus both can produce psychosis. T2 is not always associated with obesity but is known to run in the same families as schizophrenia. Type 1, which I have, has a genetic element, and is ‘triggered’ by something in the environment - probably a viral infection, possibly repeated viral infections. There is evidence that viral infections in pregnancy are associated with sz onset in the child.

The problem is that once the illness is triggered, there seems to be no ‘going back.’ Certainly, you can reduce the complications, control the symptoms. But so far restoring the gene damage has not been possible.

But I AM hopeful. Absolutely huge strides are being made in the research. I don’t subscribe to the ‘evil drug companies’ trope, simply because the first company to find a cure for any of these conditions will make BILLIONS in a matter of days, and if a drug company doesn’t do it, a university will, so we can hope. And drug companies don’t stall research. There’s always another disease to deal with.

I have had diabetes for 50 years and all that time they have been saying, ‘There’ll be a cure in ten years.’ Eventually, you stop thinking about it and just get on with life. But in fact now I think there WILL be a cure in ten years. It’s quite amazing what they are doing now.

I am sure the same kind of work is going into sz research now.


#29

Thanks @SzAdmin @Mysistersschizophren, I have a question? Can this antibiotic be taken by itself?


#30

Please understand I don’t see minocycline as a “CURE”…I am just saying this antibiotic has given more peace to my sister in the last week than the 35 years of antipsychotic drugs. I am not going to take time to convince you of anything. I just feel that I want to spread the word to everyone who will listen in hopes that it may help others. I care deeply for other people and humanity and I know the absolute hell my sister has lived in due to this horrible illness called schizophrenia. I am completely amazed at the changes I have seen - especially over the last week. My sister actually had a sense of humor for the first time in decades…she is actually asking how other people are doing…she’s changing in ways I never dreamed she would. I have hope again. I just wish our country would catch up with the world and spread the news to the psychiatrists treating people that there is something they can given them along with their antipsychotic drugs to help them feel like a human again.


#31

Yes am sure minocycline can be taken by itself with a prescription from a doctor. It’s a relatively inexpensive antibiotic, but requires a prescription from doctor. If it’s for schizophrenia, which seems to be a chronic infection in the brain, it will have to be taken for life or until there is a cure. Minocycline reduces the inflammation in the brain, therefore reducing symptoms of schizophrenia/depression/some mental illness. At first, symptoms get worse (they did for my sister for about 5-7 days…it’s called the jarisch-herxheimer effect), but my sister is SO much better after being on this for just 3 1/2 weeks. (and the first week, she was just on 100mg/day - taken twice a day…now she is on 200mg/day - taken 100mg twice a day). She has had schizophrenia for 35 years - the worst of the worst…and this cheap antibiotic is doing amazing things for her. I am so pleased and have hopes that she can even enjoy life again. I’m keeping a daily journal with her progress. Good luck to you!


#32

@Mysistersschizophren Thank You very much for the info. I will talk to my son doctor about this on his next doctor visit. Please continue to keep us updated. I am very happy to hear that your sister is doing better. My son was just diagnosed in Sept of 2015. He has been hospitalized 3 times. It has been roller coaster ride…Hugs to you and your sister!


#33

What I am agreeing with is that in many cases there seems to be inflammation in the brain, and that in some people that inflammation is originally caused by infection. Also minocycline has anti/inflammatory effect.

I don’t agree with your ‘perpetual’ infection idea. Inflammation can be caused by events other than infection and can be relieved by various things (a good diet and a lot of exercise help).

You are completely ignoring all the work on the hereditary aspect of sz. Also, sz tends to ‘abate’ in your fifties in SOME people. That tends to indicate an autoimmune disorder. As the immune system gets weaker as we age, the self-directed attacks lessen.

Your sister is finally recovering in her fifties, on a treatment that reduces inflammation. It seems likely she has this ‘autoimmune’ type.

It is clear that there are different ‘types’ of sz, or it manifests itself in different ways in different people, so treatments vary. It is wonderful that your sister is getting better. It doesn’t mean you have found the sole cure or that psychiatrists are conspiring to make patients suffer.

As parents, brothers, sisters of people with sz, it is salutary to remind ourselves sometimes that the research has shown that close blood relatives of people with sz also display many of the symptoms (without the psychosis that defines the illness), so black-and-white thinking, paranoia, scapegoating, motivation problems, etc, etc.

There are degrees of this illness. I count my blessings every day that my son has recovered so well and so quickly, that he has proved so psychologically resilient, and that he takes his medication, exercises, shops, cooks and studies, is rebuilding his friendship and family networks.

The idea that the scientists who made his anti-psychotics, the company that distributed them the doctor who prescribed them, the nurse who injected them are involved in an evil conspiracy against him is, frankly, paranoia of the first order.

Any relative if a person with sz who thinks like that should not be involved with their treatment. In fact, if my son had such a relative (and fortunately he doesn’t), I would do my utmost to keep them out of his life.

I would like my son to take sarcosine as I believe that it can undo the damage done by psychosis. There is a lot about sarcosine on the ‘Diagnosed’ forum. That might be a good supplement to go with your sister’s antibiotic, though there is no proof that it works so long after diagnosis, but no one has looked for that proof yet, so it may help her.

Perhaps you could also help your sister by helping her to establish a very healthy lifestyle while she is in this remission. Lots of vegetables and an exercise bike could help her a lot.

Anyway, I share your joy at seeing your sister ‘come back’. I know that feeling and it really is fantastic.


#34

I am so sorry about your son. I know how this illness can destroy more than just the lives of the person diagnosed with schizophrenia. My Mom died (at age 65 - heart attack followed by fatal stroke) from the stress of dealing with my sister, and my Dad had to turn the reigns over to me, as he just couldn’t handle the stress anymore. I have been doing tons of research lately and stumbled on the much research about how most/many mental illnesses are actually caused by infection/bacteria/viruses. You MUST take your son to an Infectious Disease Doctor BEFORE taking him to a psychiatrist…because they (psychiatry world) will just doom him to a life of antipsychotic drugs, without even addressing a possible illness side of things that can be treated and sometimes cured, depending on the actual problem that is causing the delusions/voices/paranoia. Here’s what I recommend you test him for:
Infectious Disease Specialist: Check for:
Check THYROID FOR Hypothyroidism
Lyme Disease
Borreliaburgdorferi (Bb)
Borrelia burgdorfi Bb spirochete
Toxoplasmosis Gondi
Borna Disease Virus (BDV)
Check Colleen’s Thyroid
Parasitic Infections
Cytomegalovirus (could have been passed from Mom – not sure if she had)
Candida Infections
Celiac Disease and allergies to wheat, milk, corn

Do your research on these things…even the new Zika virus is just another example how a virus from a mosquito bite can cause brain problems in children born to those infected. I came armed to the teeth with all the studies and info about how minocycline was found to be benefitting people with schizophrenia. I had also read that it helped those with “early diagnosed schizophrenia”. Well, my sister has had the worst of the worst paranoid schizophrenia for 35 years, and that minocycline has helped her dramatically after just being on it for 3 1/2 weeks! Her voices are “quieter” (they don’t go away, because she likely has a “perpetual/constant infection” in the brain, because the minocycline (a tetracycline antibiotic) is one of the only antibiotics that reach the blood brain wall barrier and reduces the inflammation and makes symptoms better…but she will have to TAKE THIS MINOCYCLINE THE REST OF HER LIFE! She got a little worse before she got better, but that’s normal and called the “jarisch-herxheimer effect” (it’s like the antibiotics and infection go to war), but that only lasted for about 5 days)…we saw my sister getting better after being on 200 mg/day (taken 100 mg twice a day) for about 12 days. She’s been on it for 3 1/2 weeks, and she has begun laughing, having a sense of humor, her voices have “quieted” (her description), her delusions are completely under control, and she says she has much more energy. They have even been able to reduce her clozaril from 400 mg/day to 200 mg a day, and she’s doing better than she has been in 35 years…plus they stopped giving her the Olanzapine (zyprexa - another antipsychotic) at the time she began the minocycline. She is still getting a shot of Prolixin every 2 weeks, but I hope to have that removed if she continues to do well on the minocycline and clozaril. If you want some more information, I would be happy to help you. I know the toll this can take on your son, and your family. Just let me know and somehow, I can get you my cell phone or email. Take care & you have work to do:) If you want copies of all the information that I took to my sister psychiatrist to convince her to put my sister on minocycline, let me know. Please understand, she will never be cured, because it’s still a “perpetual infection” issue, but for some reason this minocycline is either killing some of the infection or reducing the inflammation (or both) therefore giving her a MUCH better quality of life. I am hopeful that she will continue to improve. Also do NOT let anyone tell you that if your son takes this minocycline, that it is only temporary (that’s a lie / it does decrease effectiveness against acne and other things), but it continues to be a great adjunctive/additional medication to help with both the positive and negative symptoms of schizophrenia. If you need anything, let me know! Godspeed! Melody


#35

Here’s a very interesting read. Wanted to share (keep reading - part III very interesting and true in my opinion)

http://slatestarcodex.com/2013/09/12/the-life-cycle-of-medical-ideas/


#36

The Japanese study on this recommends minocycline as an ADJUNCT to anti-psychotics. Here are the conclusions of the Japanese study:

“Minocycline has demonstrated efficacy in treatment of schizophrenic patients in both open-label study, in two case reports, and randomized double-blind study. More- over, preclinical findings are consistent with an antipsy- chotic-like profile of this molecule. Minocycline is also well tolerated. Minocycline counteracts apoptosis and inflammantion that are both common features in neurodegeneration, that minocycline has other therapeutic potential other than schizophrenia and/or that neurodegeneration has relevance to the pathophysiology of schizophrenia. The mechanism of action of minocycline that might be related to its antipsychotic potential appears to involve inhibition of apoptosis and inflammation. Furthermore, minocycline affords the possibility to be combined with other pharmacological molecules and shows promising properties for transplantation and gene therapy. However, it remains important to conduct further experimental studies on various relevant models to determine its activity upon caspase-independent degeneration, its long-term-effect on brain metabolism and also to precisely evaluate the additional potential benefit it could afford for cellular and molecules.”

So the researchers themselves say that it is the anti-inflammatory effects of minocycline which help the anti-psychotics, not its infection fighting quality. There is no persistent infection.


#37

I agree there should be complete testing done before the diagnosis of sz is made to rule out a physical problem that could be causing sz like symptoms my son was never tested for anything else before he was diagnosed it was just assumed he had sz based on his symptoms - its inevitable that there are people maybe a lot of people who have been misdiagnosed if people are not being tested and these other things are not being ruled out before a diagnosis is made.

here is an article about misdiagnosis of sz from here on this website
http://schizophrenia.com/family/misdiag.html

I know theres a cost that comes with that medical testing but thats nothing compared to the long term cost of treating a condition that doesnt have a cure not only is it the right thing to do but its also the most cost effective thing to do .

Apparently our government managed medicaid doesnt insist on ruling out any other causes before it will dish out an unbelievable amount of money to manage the costs associated with a mental illness but i dont know if private insurance requires any pre diagnosis testing before dishing out money for someone diagnosed with a mental illness - but bankrupt dysfunctional medicaid has an unlimited supply of borrowed $ it seems to spend on a careless extremely expensive diagnosis before a less expensive diagnosis is ruled out :kissing:


#38

Hatty, you have thrown me enough disrespect between this post and your last one trying to discredit me and question my integrity. I chose not to respond to your last aggressive post out of my own self-control, but it’s plain to see that apparently you haven’t been reading what I have been writing, because I have said that the minocycline is not a cure, but that it works well with the clozaril for my sister. It seems you feel the need to “school” everyone on this site, so I choose not to interact with you anymore, but thank you. I WILL however continue to help anyone else whose world has been rocked by schizophrenia. I am done responding to you Hatty, but I will continue to tell people what I learn, in hopes that it may help them, especially since for the first time in 35 years, my sister is having some good days.


#39

That’s exactly my thoughts johnsmom! Well said! I think the entire protocol for diagnosing someone with a serious mental illness should be changed, in my opinion. I believe when people have a sudden onset of delusions/voices/hallucinations/paranoia…the medical professional should FIRST run proper bloodowork and testing to rule out things like Hypothyroidism, Lyme Disease, Borreliaburgdorferi (Bb), Borrelia burgdorfi Bb spirochete, Toxoplasmosis Gondi, Borna Disease Virus (BDV), Parasitic Infections, Cytomegalovirus, Candida Infections, even Celiac Disease and allergies to wheat, milk, corn…all which can cause the symptoms of schizophrenia. We should not sentence people to a life of anti-psychotic drugs, without first ruling out a real medical/physical problem. Thanks for the link:) My sister will likely always need to stay on anti-psychotic medicines like the clozaril, but at least the addition of the minocycline to her drug regimine, it has dramatically helped her quality of life thus far. I am a kidney donor…I donated my left kidney to my sisterinlaw about 10 years ago…and if I could have given my sister half my brain to give her some quality of life I would have done that too. Minocycline, as an adjunctive medicine taken with her clozaril, has really improved her quality of life, and for that I am thankful. I feel so terrible for all the others with this devastating illness, so I will continue to do anything I can to give people information that may help…and HOPE:)


#40

You burst into the site insisting that everyone must read things I for one had already read. You shouted in almost every post and you insist that you know better than every one else. If giving an opinion is disrespect, then your disrespect for everyone else here has been clear from the start. But we all tolerated your behavior because we know how it feels to watch a loved one suffer and hope for their recovery.

You have taken exception to the fact that I have quoted the researchers accurately now.

I don’t want you to pin unrealistic hopes on something that I already knew had not turned out to be quite as wonderful as you seemed to wish.
I went through all these feelings too when my son was diagnosed.

I also don’t want you to mislead other parents and carers up blind alleys.