Article Update 7th June 2010
I have found the information from a friend of mine who was diagnosed with CFS/ME and then with Lyme Disease. Here it is: http://www.prohealth.com/fibromyalgia/library/showArticle.cfm?libid=13020&B1=EM061709F
This is what she has to say about the protocol:
Marianne, Saw this article this morning and thought it was just about the best article about lyme and its connection to ME/CFS and it is written by someone in the UK. Hope you are doing well. The pulsed, combination, antibiotic protocol for my son has worked wonderfully. He is like a new person. He is excited about learning, planning to take on new challenges and feels good!! Me, I’m still working through the protocol with my older body and longer term symptoms. But, some of my symptoms have improved and I am better than I have been in the last two years. I talk to at least one person a week in our little town in VA who has fibro, lupus, CFS, etc. who is wondering if something else might be going on. This article says that 80% of people who get a lyme diagnosis at one time were diagnosed with ME/CFS. Enjoy the summer!
20th May 2010 Spelling of Lyme Disease updated due to comment below.
18th May 2010 Original Article
Some time ago a friend in the US of A, a reader of this website spoke to me about her CFS/ME condition and how things changed for her when she was tested positive to Lyme Disease.
She was put on a course of anti-biotics and is slowly feeling better. She has been told it will take a while to get to wellness.
At the time she felt so passionate about her condition, she had been diagnosed with CFS/ME for many, many years. If only they had tested her for Lyme Disease before.
I can’t remember if I offered to write about this or if she asked me to, but eventually she sent me the information twice and twice I totally forgot. For some reason I have remembered this morning.
I wonder if the reason I forgot is because I am a little sceptical about her diagnosis of CFS/ME in the first place. I don’t mean to be unkind to her, she is a lovely person, I am just querying all of our diagnosis’.
We have Lyme Disease in this Village because of the Deer I was told roaming around the woods and fields. A neighbour died from Lyme Disease and at the time, when we were travelling in France my young son got bitten by a tick and because of the worry of Lyme, I took him to a local GP to be treated. He took my worry very seriously without me having to explain anything and after killing the tick and extracting it, my young son of 6 years old was put on very strong antibiotics.
Now maybe the initial furore of Lyme has simmered and maybe strong doses of antibiotics have been ruled out as a cure. Maybe some are simply unlucky if Lyme causes serious illness and death.
I personally feel that the nature of CFS/ME causes the individual to carry all sorts of bacteria, virus, fungi and parasites and this is why most CFS/ME people feel better on low dose antibiotics. I know ‘they’ have found a retro virus in many CFS/ME people although not all in their trial had the virus.
I suppose because I feel so much better that I feel that CFS/ME is not caused by a bacteria, virus or fungi. I do feel that the cause is congested lymphatics, a muddy, stagnant pool of fluid that is not doing the work it should in the body which is to clear toxins away. These poor lymphatic waters will carry all manner of toxic waste.
The argument could be Do Lymphatics clear away parasites? The answer to this is No and Yes. Lymphatics on their own, won’t, but with white blood cells to attack and supporting herbs and spices in conjunction with a ‘good’ diet with Calcium, Magnesium, Zinc, Vitamin D and DHA from Omega Fish Oils, may get well.
However all this aside, I am so happy for my friend who is feeling better. That is such an enormous plus. And anyone suspecting Lyme Disease should demand full testing from their GP.
Regardless of diagnosis to CFS/ME or Lyme, those feeling unwell and going to their GP in the first place because of symptoms would do well to take part in a Gentle Stretch programme, avoid all their personal allergens and consume fresh vegetables of a great variety and plenty of protein from red meat (only food that contains a neurotransmitter – actyl-L-carmine) and from nuts and seeds. They may get better without intervention from their GP.
I often think about the Tea drinkers who were banished to Botany Bay and found a plant that made a decent tea to drink and found they felt better than they had in decades.
So the essential oil of Tea Tree was made. What I wondered about is this: Did we in days gone by consume low dose antibiotic foods as a matter of course which kept parasites and other invasions at bay?
After all, cutlery was made of silver and silver has now been shown to be a powerful and very safe antibiotic, antiviral and antifungal. So perhaps we should all be consuming low dose natural anti-germ foods which would support our immune systems.
I suspect we have been ‘warned’ off natural antibiotic substances because of the damage done to the body by synthetic antibiotics. Synthetic chemicals carry too much of the active substance without its supporting counterparts to balance and so therefore are too strong and too intense in a form not recognised in nature.
So where can I buy some Tea Tree plant leaves for a quick brew? That will kill the Lyme surely?
Well at least you gave it a go but sadly rather a misleading one.
It actually is Lyme Disease not Lyme’s Disease or any other conatation.
Sadly there are many more infections passed by ticks not just Lyme Disease. It rather depends where the tick has fed before. Many small mamals that it is likely to feed from such as rats and mice do carry many other infections.
Research shows that blood tests can miss up to 50% of cases, not everybody gets the typical Bulls eye rash, we are not always aware of the poppy seed sized tick that may bite us and sometimes it can be years later than the bite before symptoms appear ie the immune system seems to cope until a trigger years later.
There are a growing number of doctors here in the UK who are now recognising that long term antibiotics at a high dose are beneficial for treating Chronic Lyme Disease. Many of them have themselves or their family members sufferred and had to travel to USA for specialist treatment and then after that treatment got their health back.
In June in London at the Royal College of Obstetricians and Gynaecologists there will be an educational conference about Lyme disease and other tick borne illnesses see http://www.ilads.org
for details.
One presenter Dr Sarah Chissell will compare congenital Lyme with the problems of congenital Syphillis.
DR Martz an Oncologist will present on his personal experience being diagnosed with ALS or Motor Neurons as we call it in the UK, since recovering he opened a clinic and did research on his patients he saw with ALS/Lyme.
Dr Corson a Paediatrician should do a very interesting presentation.
Lyme Disease often presents as OCD, ADHD and even Autism in children and on appropriate treatment the children get better.
Prof Peronne a researcher and practitioner in the field of Lyme treats his patients on long term antibiotics at a General hospital in France, something not generally available at other European hospitals and certainly not in the UK.
and so on.
There are many experts in the field of ME/CFS and Lyme who recognise that a small percentage at least 30% of patients diagnosed with ME/CFS actually have Lyme and indeed there is research that shows this, yet getting doctors to properly assess for Lyme is very difficult.
The HPA in the UK follow IDSA discredited guiodelines, the IDSA guidelines were recently reviewed and the presentations from the ILADS doctors to the review panel showed a considerable body of research and patient experience that indicated that some patients benefitted from long term antibiotics.
The result was more shinanegens by the IDSA which dismissed all the research presented because they were not Randomised Placebo Controlled Trials. What madness. The only 4 RPCtrials discussed at the review hearing if anything showed that patients did benefit by longer treatments but as the trials ended at 6 months the patients deteriorated.
They also dismissed a considerable body of European research, because as there are at least 4 other species in Europe to USA 1 they felt it was not relevant despite some of that research being on the USA species. Sadly HPA does not apply vice versa.
Through Eurolyme I am in touch with more than 2000 other patients many of who like me were diagnosed with ME/CFS but eventually found they had Lyme Disease and on long term antibiotics are getting their health and lives back.
It took 5 doctors and 3 rheumatologistys 4 years to diagnose me after a chance course of antibiotics led to my GP suspecting Lyme Disease.(There had by then been other people present at the surgery with bites rashes and positive NHS tests). I had attended the surgery at the time of bites, bulls eye rashes, summer flu’ and migrating arthralgias. I had been diagnosed with Fibromyalgia, ME/CFS, Arthritis, Muscle Weakness, Musculo Skeletal Disease, Polymyalgia Rheumatica and then at last Lyme Disease.
I had been Retired early from the Civil Service on the grounds of ill health, at my worst I had difficulty standing and walking across a room, for 3 1/2 years I could not walk up or down stairs properly and now I am recovered nearly 100%, I have no pain, no disability I can garden and cycle.
How many more people must suffer years of chronic ill health but for a bit of awareness of this dreadful illness, but worryingly our children are the most vulnerable.
For more information see
http://www.lymediseaseaction.org.uk
Hi Joanne, thank you for taking the time to explain this and leaving a link for others to follow this up.
Forgive me but I am struggling with understanding this. My thoughts are: What physical evidence was there that you did have Lyme? Were the little parasites seen swimming in your blood/lymph or faeces? If there is no discernible evidence of Lyme, then how is it worked out that using strong antibiotics kills the Lyme or any other indiscernible parasite?
My thinking is that my immune system has been weakened through congenital aspects due to parent’s and forefather’s stresses, spoiled soil conditions where bacteria, virus, fungi and parasites have multiplied in fields due to not rotating crops, not leaving the field fallow, use of synthetic chemicals, farming methods, food production methods and manufacturing methods of foods. Therefore my immune system cannot fight bacteria, virus, fungi or parasites very well.
I am thinking that before soil and growing conditions were abused and the introduction of synthetic chemicals and messing with our food, immune systems were probably very good and could counterattack bacteria, viruses, fungi and parasites fairly well.
I could have Lyme I suppose but I also could have any number of parasites that cannot be traced. I have to trust that my blood/lymph and faeces not showing this means they are not present. I have to assume that because Cranial Therapy, adjusting body misalignments, stretching, pure food, herbs and spices, minerals and a diet with enough protein, essential fats, carbohydrates, minerals and vitamins and water and adequate R&R helps me considerably to more than 80% wellness that it is not a parasite alone that is the cause of my illness but a weakened immune system that has basically lost the plot.
I wonder why people have hit upon Lyme as being the culprit of their CFS/ME? Is this because having been diagnosed with CFS/ME a subsequent specific test for Lyme showed Lyme physically present in the sample and antibiotics cured them of all their previous symptoms? Is this why some with CFS/ME and no evidence of Lyme are making the leap that it could still be Lyme as the cause because antibiotics help? This is too much of a leap for me and I would need hard facts.
Here is a fact found on the website you gave me:
” A tick must be attached to a person for 2-3 days to result in infection. This is due to the life cycle of B burgdorferi in ticks. In previously infected ticks, only small numbers of bacteria are present until the tick feeds. Once feeding begins, the bacteria then multiply in the gut of the tick. The bacteria then migrate to the salivary glands of the tick after 2-3 days. There, they are injected into the animal by the tick as it ends its feeding. Until this multiplication occurs, ticks are rarely able to pass on the infection.”
This describes a specific test for Lyme Disease: http://www.labtestsonline.org.uk/understanding/analytes/lyme/test.html
I do thank you for your comments though and please do not take my scepticism personally. I am very pleased you are so much better and who knows one day the theories will be proved and I will have to eat my words!
PS mammals has 3 ‘ ms ‘ not 2, suffered has 1 ‘ r ‘. 😉 😉 😉
I only just saw your reply so sorry for the delay.
Many patients are diagnosed with Lyme Disease using various different testing methods not generally used by our NHS.
Essentially though it is a clinical diagnosis made on history and symptoms that only a specialist doctor can make – certainly can not be ruled out by our mainstream doctors as they have not the experience.
There are research papers that show links between ME/CFS and Lyme just one http://www.iacfsme.org/BULLETINWINTER2011/Winter2011ShorCFSinLyme109123/tabid/458/Default.aspx
There are many experienced ME/CFS doctors the likes of Kenny De Meirlier, Nancy Klimas, Judy Mikovits, David Bell that recognise that many of their ME/CFS patients also have Lyme and that that is one aspect that can be treated.
Lyme is rarely a singular infection in fact it is becoming more widely accepted that people with chronic illnesses are often suffering with Multiple infections – thus it is perhaps not a good idea to just say Lyme – Dr Horowitz one of the World renown Lyme Doctors refers to it as MCIDS- Multiple chronic infectious diseases syndrome. He was recently invited to work with China’s equivalent of HPA or CDC to advise on tick borne illnesses.
Recently Prof Luc Montagnier has been involved and recognises the need to treat Lyme with long term antibiotics. He was recently involved with a study in France 10 doctors treated 200 children who had Autism on long term antibiotics – 4 out of 5 recovered, more research is to follow. Not all with Lyme but the child in the TV interview did have Lyme. Interestingly there is a high statistic of mums with ME/CFS having children with Autism.
http://lookingatlyme.blogspot.co.uk/2012/02/treating-autism-with-antibiotics.html
http://lookingatlyme.blogspot.co.uk/2012/03/translation-of-prof-montagnier.html
I should add that Prof Montagnier won the Nobel prize for his work with HIV and is very widely respected and used to looking at many chronic infections associated with patients with a compromised immune system.
This is so much more than hypotheses there are ample studies of patients where tests were negative and then later positive by other testing methods or after a provocative course of antibiotics.
I am not trying to change your view only to say that anyone interested needs to do their homework thoroughly and seek expert advice. ( We are not always aware of the poppy seed sized tick, nor do we all get the Bulls eye rash, summer flu’ migrating arthralgias but even those of us that do are often neglected by our Doctors.)
So no theories, very many hard scientific facts if anyone cares to do some investigative work.