PATHOLOGY NEEDED TO SHOW PERSISTENCE OF BORRELIA

Tuesday 21 August 2012

PATHOLOGY NEEDED TO SHOW PERSISTENCE OF BORRELIA

Below is an extract from BettyG's Blog written by Tom Grier - to read the whole posting click here

'The experts got almost everything important about Lyme disease wrong from the very beginning, and never once tried to apologize or correct their mistakes.

So I ask again: Why do we call them Lyme experts?

They should be held accountable for mistakes that either came from arrogance, incompetence, or a purposeful choice to mislead us.

Personally I believe it to be all three.

But I am not asking anyone to just accept my arguments based on history or my opinions.

I am asking the entire world to base an opinion on the basis of pathology.

Scientists must look for the persistence of Borrelia species in the human brain after antibiotic treatment.

A study should include no less than 1000 human brain autopsies world-wide on Lyme patients, dementia patients and MS patients.

We need to use state of the art research tools to look for the survival of the bacteria in the human brain.

We must use at minimum the following tools:

Fluorescent-antibody stains for Borrelia, Silver-Stains, RNA-PCR for a generic Borrelia markers that are not species specific, but can detect any Borrelia species, thin section microscopy, the Bosner-Steiner method of staining and brain tissue analysis (this allows many cell layers to be analyzed instead of just one) tissue culture,
PCR and antigen captures tests of Borrelia antigens.
And for heavens sake: don't let the old school "Lyme-Experts" have a cent of the research monies to do this study;
keep the CDC out of it,
and don't allow corporate health organizations to contribute funding.
Use private monies that are untainted by conflicts of interest.'

Tom Grier

There are more interesting lectures by Tom Grier posted in the right hand column of Looking at Lyme Disease blog.

2 comments:

Music Woman21 August 2012 at 23:32
If anyone is interested there is a fairly new direct blood culture test that cost I believe $600 out of pocket. Your blood can be taken and sent to Advanced Labratory in New Jersey.This test actually cultures your blood 2 times about 3-4 months apart and if you have Borrellia, it will show up as growth in the blood. 80% of patients who were negative on all other Lyme tests are now showing up that they do have the Lyme bacterial Spirochete in their bloodstream. This is a big breakthrough but unfortunately Western Medicine and the ISDA do not yet recognize this test as a "legitimate" test.
ReplyDelete
Replies
Joanne22 August 2012 at 07:14
Thanks Music woman for your comment I follow developments with this new test and look forward to something similar being available here in the UK. Good luck with your battle with Lyme Disease. For anyone not familiar Music Woman was referring to IDSA an easy slip to get the letters mixed, I seem to do it all the time when I type these days.
ReplyDelete
Replies

Add comment

Lyme Life written in 2009

I started suffering with arthritis in mainly my large joints especially my knees 6 years ago. The symptoms varied and I remember saying that every joint was affected except my elbows to one doctor. I was told it would be hormonal and to take the usual supplements cod liver oil or glucosamine ( I would certainly recommend buying shares in the companies producing these supplements) They had no noticeable affect.

All my symptoms deteriorated significantly over a few weeks,4 years ago. Hips shoulders and knees being the worst and I started with muscle weakness in upper arms and upper legs. I had difficulty standing and walking across a room. I was unable to walk upstairs and my husband was making plans to convert to a downstairs bedroom. I had seen 5 doctors and 3 Rheumatologists and put on steroids for Poly Myalgia Rheumatica diagnosis. I had been diagnosed with Fibromyalgia and ME/CFS.

I have X rays and scans showing signs of osteoarthritis and Rheumatoid arthritis. ( later note.- the X rays done some years into treatment showed my hands completely normal no signs of inflammation or RA confirming how they felt - normal) I have been retired early from the Civil Service having lost my job not to mention my earning potential. My illness seemed to progress through my body not affecting the same joints left to right at the same time. I had bursitis in left hip, right hip, left elbow. I had synovial thickening in both wrists. At that time I could not lift and hold a magazine so lifting a kettle I could only do if a third full and with two hands. Each joint in my hands fingers feet and toes were affected. I had swallowing difficulties and many other symptoms. None of this describes the endless and awful pain whenever I moved or the tiredness but inability to get quality sleep.

Two years ago my GP gave me Amoxicilin for a sinus/throat/chest infection. All my arthritis symptoms improved. The course ended the symptoms deteriorated I started a second course the symptoms improved. The improvement was more significant than when I had started taking steroids. This led my GP to suspect Lyme Disease. I laughed because we do not travel abroad but she said they had had other cases in the surgery in the early stages of tick bite and Erythma Migrans rash. She said but you have not had a bite. I said oh yes I have I had two on my ankles with rashes, March 05 this was confirmed on her computer when I had seen a locum doctor. My worst symptoms were waking up feeling rigid and having to painfully flex every joint in my body before struggling to get up. The only other time I had experienced this was in May 2003 during a flu like illness like no other I had ever experienced. At that time I had a bite and similar rash on my right foot which lasted like the other rashes about four weeks. I had also consulted the surgery and it was dismissed as a virus. I walked our dog daily in the woods adjacent to our house where the deer roam, prime tick area. Thus started my very lengthy search about Lyme Disease leading me through Lyme Disease Action to a doctor who specialises in this illness. He confirmed my GP's suspicions. I never had a positive blood test but then they are antigen tests and there is much research that shows they are unreliable. In my case the year of steroids and many weeks antibiotics could have affected the results. So with a clinical diagnosis and following ILADS International Lyme and Associated Disease Society guidelines I continued on antibiotics for two years. Both my doctors continued to treat me despite of Health Protection Agency advising against long term antibiotics. I am now nearly 100% recovered I have no pain or muscle weakness. I can walk upstairs something I could not do for three and a half years. I can garden do house work and live a normal life. I still need to pace myself and with only a few months to 60 will not be looking to return to work. Life is such a joy. Sadly there is much controversy about Lyme Disease and doctors in UK are taught that it is so rare. Well where I live in Guildford I have been in contact with a dozen other people with it so perhaps not so rare as HPA would like us to believe. I am in touch with nearly 2000 other patients through a chat line Eurolyme most had been misdiagnosed with several other illnesses. Look at UK charity Lyme Disease Action if you want to read more about this illness. There are many MP's taking an interest in the problems surrounding diagnosis and treatment see above charity links into a recent meeting at the House of Commons.

Thank goodness there are some thinking doctors around who have courageously treated me against opposition and I have made such a miraculous recovery albeit rather a lengthy one. One day there will be many more people who are helped with their chronic illnesses when IDSA starts taking note of what our courageous LLMD’s are doing following ILADS Guidelines.

ME/CFS, Fibromyalgia, Poly Myalgia Rheumatica, Arthritis, Bell’s Palsy, MS,MN, ALS, Parkinson’s, Alzheimer’s, Heart Block, Stroke, Psychiatric, gastric problems the list is endless. Not all suffering from Lyme Borrelia but how many are even properly assessed for it.

UPDATE

UPDATE 10 January 2012