LOOKING AT LYME DISEASE - MSIDS: GERMAN GUIDELINES FOR LYME DISEASE

Friday, 15 July 2011

GERMAN GUIDELINES FOR LYME DISEASE - A SLIGHT CHANGE IN DIRECTION.

At last a slight change in direction from the overly dependence on the IDSA Guidelines, well done to these doctors for producing these new Guidelines and referencing to more of the doctors who specialise in Chronic Lyme disease and have a better understanding than the narrow minded doctors who only see an acute form and thus they believe we can all be cured in just a couple of weeks antibiotics!

Most of the patients I am in touch with failed the IDSA's treatment of a couple of weeks antibiotics but have made significant progress on longer courses of treatment.

Deutsche Borreliose-Gesellschaft e. V.

Diagnosis and Treatment of Lyme borreliosis

Guidelines here

Just a few points mentioned

Chronic Lyme

Latency 8 years before symptoms developed.

50% not aware of tick bite

50% no EM

Seronegativity following early anti-biotic treatment therefore does not rule out Lyme borreliosis in any way.

Chronic stage

Lyme borreliosis can lead to numerous symptoms. The following are particularly frequent:

• fatigue (exhaustion, a chronic feeling of illness)

• encephalopathy (impaired cerebral function)

• muscular and skeletal symptoms

• neurological symptoms (including polyneuropathy)

• gastrointestinal symptoms

• urogenital symptoms

• ocular symptoms

• cutaneous symptoms

• heart diseases.

The success of treatment must be assessed clinically

A negative serological finding does not rule out Lyme borreliosis

There may be a disease requiring treatment even without the detection of antibodies. (Causes: e. g. antibi-otic treatment starting early but inadequate with immunodepressants, including cortisone, exhaustion of the immune system, masking of the causative agents, genetic disposition.)

Co-infections can be transmitted by ticks or by other routes of infection

The scientific basis for antibiotic treatment is still inadequate at the present time, with the exception of the localised early stages (EM). The considerable shortcomings in the scientific-clinical analysis are reflected in therapeutic guidelines, which are severely limited in the reli-ability of their recommendations and in their evidence base in the international litera-ture,(159) and they do not meet the requirements from the medical and health-policy aspects.

Successful antibiotic treatment is possible only if the individual has an effective immune sys-tem. With regard to antibiotic treatment, problems also arise with Borrelia due to natural or acquired resistance. The causative agent of Lyme borreliosis can evade the immune system by what are known as “escape mechanisms”

5 comments:

RitaA16 July 2011 at 04:35
Joanne,

Thanks very much for posting this. I shared it immediately with my fellow Canadians at www.canlyme.com and with those at LymeNet Europe because I wasn't sure if you ever post there.

I'm so thankful that any country is leading the way when it comes to treating Lyme disease patients with persistent symptoms -- regardless of the cause(s). There's a clinic due to open in Vancouver, BC this fall, and I hope they will adopt these guidelines or come up with their own. Hopefully Canadians will be able to partner with other countries to carry out some meaningful research that will benefit people the world over.

Those who look back on this shameful period in medical history will likely be appalled at the behaviour of doctors who deliberately withheld treatment from those who suffered as a result of IDSA guidelines being almost universally and blindly followed. Tick-borne illnesses are complex, and is the oversimplification of Lyme and related diseases by a relatively small, but powerful, group of medical professionals that really bothers me.

Let's hope the future holds more promise for humane and effective care for those who are unfortunate enough to have illnesses like Lyme disease, chronic fatigue syndrome and fibromyalgia.

Thanks for all you do.

Rita A
Toronto
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Joanne16 July 2011 at 07:42
Hi Rita Nice to meet you I meant to comment back on Camp Other blog but where does all the time go. I only occasionally pop by other forums because again it is time but do have a few peole I am in touch with from Canada through Eurolyme. Good to hear about Vancover clinic hear's hoping. I think my friend Alison has occasionally posted about my blog on Canlyme.
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Camp Other16 July 2011 at 19:02
Joanne,

Thanks for posting about these guidelines. I've been reading them carefully, and have yet to look at the references/citations more closely - the German doctors and researchers who created these guidelines refer to recent studies as well as old ones conducted by *drumroll* members of the IDSA. Funny, that.

I am thinking about doing a compare and contrast between the different definitions of stages mentioned here and in the 2006 Lyme disease panel guidelines. There's something worth pointing out there.
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Joanne16 July 2011 at 20:52
Yes interesting that they acknowledge so much of the Drumroll members whilst introducing a more open minded approach.

Ben Luft, with his sequencing the Genome finding such a variety of strains, gave the IDSA cohort such a good get out of Jail card but seems they are still too arrogant to take it.
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Joanne16 July 2011 at 20:53
I look forward to reading your take Camp on the German Guidelines and no doubt CALDA may well do something on them too which would be interesting
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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