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brian nicholson detained in psyschiatric unit with me cfs for 3 years

Countrygirl

Senior Member
Messages
5,429
Location
UK
@ bohemian

Please ask the staff to give you the results of your blood tests which check for the function and numbers (particulary, function) of your various white cells.

Also it is mandatory that your blood test results are recorded centrally. See this: Clozapine users in the United States, Australia, Canada, and the UK must be nationally registered for monitoring of low WBC and absolute neutrophil counts (ANC).

Is this order being followed? GIven what we uncovered in the past, I somewhat doubt it.
 
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bohemian

Senior Member
Messages
133
Dear support

I thought id inform you whats happened.
Ive had mental nervous breakdown. I feel no hope anymore. Im still on clozapine. I need help and they might put in hospital again. Clozapine and m.e and dysautonomia. What are mess im in. And i used to work for a global government corp. I will contact the m.e support groups.
 

bohemian

Senior Member
Messages
133
Dear all....i am worried about mri and m.e.

I have been diagnosed with several disorders of brain such as cerebellar syndrome from queens square plus other issues such as temporal lobe problems but mri is normal.

Anyone have same issues.

I am suffering severe exhaustion - horrible.
 

Avenger

Senior Member
Messages
323
Hi, yes.

I have been diagnosed with D-Lactic acidosis after 18 years of ME.

It causes neurological systemic symptoms that are both fluctuating, intermittent and can mask as almost anything including ME/CFS, because it is a form of systemic poisoning caused through an abnormal Overgrowth of Gut Bacteria which produce the neurotoxin and poison D-Lactic acid. I had headaches, sight difficulty, kidney pain at times and frequent dizziness to confusion and breathing difficulty with intermittent weakness and hypoglycemia.

Fatigue is horrendous; do you have any Gastrointestinal symptoms, which are often overlooked as they are far less disturbing than the neurological symptoms that are produced?

If you have Gastrointestinal symptoms this may be due to Bacterial Overgrowth, which acts much like an infection, producing a number of metabolites including D-Lactate, which can vary from mild production to severe and can be life threatening, seizure, coma or death and can cause symptoms such as abnormal fatigue, dizziness and difficulty thinking to severe periods of confusion, muscle weakness and breathing difficulty due to high CO2 and levels of acidosis and D-Lactate entering spinal fluid. It can affect at the cellular level to cause mitochondrial dysfunction and can affect blood sugar and give symptoms like hypoglycemia. All of these problems affect your brain and nervous system.

Doctors have no understanding of these issues and can only gauge by performing Blood Gas and D-Lactic assays.

Paul.
 

bohemian

Senior Member
Messages
133
Thank you for help.. please can you help. I have quitte serious neurological signs...eyes, reflexes ataxia dysautonomia disorientation headaches etc but a normal mri shows nothing wrong. It makes you feel lost..... i dont feel its accurate. Bsck many yrs back i had a small bleed on brain a blood vessel injury i believe i had a mri with the dye used. Kind thanks.

I am very ill i have to get off this drug - clozapine.
 

nyanko_the_sane

Because everyday is Caturday...
Messages
655
Thank you for help.. please can you help. I have quitte serious neurological signs...eyes, reflexes ataxia dysautonomia disorientation headaches etc but a normal mri shows nothing wrong. It makes you feel lost..... i dont feel its accurate. Bsck many yrs back i had a small bleed on brain a blood vessel injury i believe i had a mri with the dye used. Kind thanks.

Unfortunately conventional MRI imaging does not always catch signs of ME/CFS. Only the Japanese PET scan and Jared Younger's MRI scans show promise as diagnostic tools. This article explains some of this groundbreaking work. So if some of our symptoms are the result of neuroinflammation then we need to try things that might help with this. Curcumin acts as an anti-inflammatory and so do SSRI drugs.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Unfortunately conventional MRI imaging does not always catch signs of ME/CFS. Only the Japanese PET scan and Jared Younger's MRI scans show promise as diagnostic tools. This article explains some of this groundbreaking work. So if some of our symptoms are the result of neuroinflammation then we need to try things that might help with this. Curcumin acts as an anti-inflammatory and so do SSRI drugs.
Unfortunately SSRIs have severe side-effects for many people, including me.
 

Avenger

Senior Member
Messages
323
Thank you for help.. please can you help. I have quitte serious neurological signs...eyes, reflexes ataxia dysautonomia disorientation headaches etc but a normal mri shows nothing wrong. It makes you feel lost..... i dont feel its accurate. Bsck many yrs back i had a small bleed on brain a blood vessel injury i believe i had a mri with the dye used. Kind thanks.

I am very ill i have to get off this drug - clozapine.


Concerning D-Lactic acidosis due to Bacterial Overgrowth as a possible cause of your brain symptoms; D-La produces a neurotoxin that can cause all of the symptoms that you mentioned, do you have any Gastrointestinal problems as well?

Theory; Devolution of the Gut Microbiome, generation by generation, due to antibiotics;


Dear Professor,
I have a new theory, which evidences the importance of everything that both you and Dr. Myhill have written concerning ME/CFS!
This concerns the most recent reports about antibiotics which may be one of the factors involved in dysbiosis and overgrowths involved in ME/CFS which have been found not only to alter Gut Species and Symbiosis of Bacteria, dysbiosis and overgrowths, but also effects upon the immune system and the brain. This would mean that we will have increasing disease due to alteration of the immune system and inability to properly metabolize necessary foods, increasing immune disorders and problems such as IBS, SIBO and D-Lactic acidosis which have been found in many patients with ME/CFS.

Theory; Devolution of the Gut Microbiome, generation by generation, due to antibiotics;

If antibiotics are to blame, you can imagine that subsequent generations since the 1950's would have increasing alterations to the Gut Microbiome passed on from mother to mother as increasingly dysfunctional Microbiome, which means that we are de-evolving our Gut Microbiome, generation by generation, that has evolved symbiotically over hundreds of thousands of years, so in that sense it is linked to inheritance. We are inheriting changes to the established Gut Microbiome which is being changed by the actions of antibiotics directly on Gut Bacteria but also changes in the Policing Immune System not only within the Gut!

From an online discussion:

Take a look at the reports below my message. Antibiotics may have a profound effect not only on our immune systems, but also on our brains. These are new studies and need further corroboration, but the implications are profound.


Antibiotics are also able to select for Overgrowth through some Species gaining resistance and others being decimated and Overgrowth occurring.

Coupled with the direct effects of antibiotics upon the Gut Microbiome, it is no wonder that we have ME/CFS or other forms of disease. ME/CFS may be a modern phenomenon caused not only by overuse, but a side effect of antibiotic usage. ME/CFS seems to have escalated since the 1950,s when the use antibiotics were first used en masse. The secondary effects of Bacterial Overgrowth is 'leaky gut' where metabolites produced damage the gastrointestinal lining causing foods and bacteria to cross the mucosa and will result in inflammation and immune disorders that have been linked to MS etc.

If antibiotics are to blame, you can imagine that subsequent generations since the 1950's would have increasing alterations to the Gut Microbiome passed on from mother to mother, which means that we are
de-evolving our Gut Microbiome, generation by generation, that has evolved symbiotically over hundreds of thousands of years, so in that sense it is linked to inheritance.
We appear to be wrecking the planet for ourselves both externally and internally! At our peak of civilisation we are now introducing disease.

If 50% of the population, including myself have Helico-bacter infection, it is likely that many of these will have been treated with antibiotics alone as well as many other things like Chest and Gastrointesinal infections at some point............I was given high doses of antibiotics for Helico-bacter and developed Glandular fever also just prior to falling ill with D-Lactic acidosis. I was also given Non-Steriodals for several years until I developed a bowel perforation and sepsis. Professor Gillian Belch believes that ME/CFS happens in patients who have experienced a combination of insults prior to illness.

My belief is that we have created this disease, caused by an inability of the body to adapt to modern living which includes high levels of starches that we have not adapted to, chemicals, antimicrobrobials and antibiotics. We have introduced so many new factors and drugs..... I also have an immune disorder (low IgM), that I had to diagnose for myself from my own records which showed repetition of abnormal immune findings that had gone unnoticed, but has been corroborated and diagnosed by a consultant Gastroenterologist.

Antibiotics Found to Cause Immune System Damage And Reduce Brain Cell Growth

DAVID NIELD
26 MAY 2016
Two new international studies have shed further light on some of the harmful side effects associated with antibiotics – including damage to the immune system, and memory problems caused by a lack of growth in new brain cells.

The findings serve as a reminder that while antibiotics can be powerful allies for the human body in the fight against disease, they can also do more harm than good if used in the wrong situations (one of many reasons you should always follow the advice of your doctor).

Both studies found that the way antibiotics kill off microbes in the gut can cause health issues, due to the way the delicate chemical mixes in our bodies can be thrown out of balance by the medication.

The first study, led by researchers from the Memorial Sloan Kettering Cancer Centre in New York, involved 857 patients receiving hematopoietic stem cell transplants – a treatment typically used to tackle blood and bone marrow cancers. Antibiotics are usually given in these cases to prevent or treat infections linked to the transplants, but the researchers found that patient health varied depending on the types of antibiotics used.

They tested 12 of the most common types of antibiotics, finding that two combinations in particular – piperacillin and tazobactam, and imipenem and cilastatin – led to a higher risk of a life-threatening inflammatory condition called graft-versus-host disease (GVHD).

The hypothesis is that the 'mass exodus' these particular antibiotics caused in the patients' gut microbiomes harmed the body's immune system in some way. Similar results were observed when the researchers tried the same tests on mice.

The second study, led by a team from the Max-Delbrueck-Centre for Molecular Medicine in Germany, investigated the effects of broad-spectrum antibiotics – those that kill off many different types of microbes – on mice. They noticed a slowdown in brain cell development in the hippocampus, which is the part of the brain responsible for memory and controlling the nervous system.

These mice performed poorly on memory tests, and were also found to have fewer monocytes (white blood cells that fight off viruses) in their bodies. When the course of antibiotics was stopped, the mouse brains were able to rebound to their former state, according to the researchers.

Scientists involved in both studies have emphasised that there's more work to be done, and further tests to be run before we understand exactly what this means for the way we use these antibiotics in the future. For the time being, though, it's a good reminder that these drugs should always be carefully used – and not overused in any circumstances.

The first study is published in Science Translational Medicine, and the second appears in Cell Reports.

Paul.

 

Avenger

Senior Member
Messages
323
Email from Professor Malcolm Hooper:
we are being conned by the NHS and GOV'T!


Dear Paul,
This is excellent but would be strengthened by referring to he abject failure of the PACE trial that clearly showed that the treatment of ME/CFS with psychiatric techniques CBT/GET is ineffective despite the study being established at great cost >£6 million to demonstrate its efficacy.
CBT/GET have become the cornerstone of treatment for a number of complex chronic multisystem conditions which have been labelled as somatoforrm disorders due to laziness/ igorance/or the mindless embrace of cheap medicine. ME as a biomedical disorder has been clearly vindicated along with others such as Gulf War Syndrome, Aerotoxic Syndrome, and Sheep dip poisoning which can no longer be dismissed but must be investigated. Government Policy including the NHS England, DWP, MRc, Insurance Companies can no longer rely on CBT/GET or somatisation as a creditable “treatment” for these illnesses or resist payment of benefits and financial and clinical support for people suffering from them.
Well done with your persistence in exposing the roots of your illness.
With best wishes
Malcolm Hooper
On 9 Jul 2017, at 02:12, Paul Smith​
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
@Avenger I assume you know that the manufacturers of Septrim admitted liability to causing ME in people who had taken the antibiotic and paid out compensation. I suspect they had to sign a gagging clause. Doris Jones MA wrote a lot about it in the '90s. I think it was re-marketed under the name bactrim.
 

bohemian

Senior Member
Messages
133
Dear m.e community.

Thank you for help.

Please does anyone have name of all parliamentary group leader.

I wish to write about big business re: m.e.

My case needs mentioning in parliament.

Thanks for help.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
@bohemian I am so sorry your situation is so tough still. If only we had a magic wand!

I recall you being diagnosed with chiari malformation and wondered if you have been following the threads on CCI and ME?

Have you read Jeff Woods' blog, MEchanical ME? It might relate to you given your history.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Dear phoenix

Just got over 4th pneumonia and was admitted to hospital. Four days of iv antibiotics.....and get some food down me......

Bit if concern....regarding why i get pneumpnia.

Will update soon....b x

Not again, @bohemian !! I am so sorry!

We surely know why you get pneumonia.................clozapine! Huff! Why don't they take you off this stuff?
 

bohemian

Senior Member
Messages
133
Yes clozapine must be a factor in frequent pneumonia. I should have sorted issue out in hospital. I feel silly..... i cannot cope with there problem....to much risks if i come of clozapine. They havent written a summary report of what ive said and done and my so called schizophrenic behaviour presentation.

I cannot believe this isssue its been a decade of antipsychotics....how silly am i. Ive let myself down.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Yes clozapine must be a factor in frequent pneumonia. I should have sorted issue out in hospital. I feel silly..... i cannot cope with there problem....to much risks if i come of clozapine. They havent written a summary report of what ive said and done and my so called schizophrenic behaviour presentation.

I cannot believe this isssue its been a decade of antipsychotics....how silly am i. Ive let myself down.

You have been badly let down, @bohemian, but not by you. The medical profession has treated you badly and unprofessionally.

I think you must insist on having a copy of their summary report and the full one if it exists. It might be useful evidence.

Hope you improve asap from the latest bout of pneumonia.