LOOKING AT LYME DISEASE - MSIDS: ILADS CONFERENCE TORONTO - A SNIPPET BUT SIGNIFICANT NEVERTHELESS

Sunday 30 October 2011

ILADS CONFERENCE TORONTO - A SNIPPET BUT SIGNIFICANT NEVERTHELESS

Dr Horowitz Talks about Babesia Treatment - presenting at ILADS conference in Toronto 2011

Not included in this video but Dr Horowitz started his presentation talking about his recent visit to China to discuss Babesia with the CDC in China - good to know China is taking not just Babesia but other tick borne illnesses seriously and not being fooled by the IDSA restrictive guidelines.

Dr Jemsek, Dr Jones and Dr Raxlen at ILADS conference in Toronto 2011
Dr Jones touches on pregnancy and Lyme Disease.

Management of Ixodes scapularis bites — Dr Maloney

More information and DVD's will be available from the ILADS website here

7 comments:

Camp Other31 October 2011 at 03:30
Thanks for posting these videos.

Of the lot, I think that Maloney most succinctly describes how study outcomes differ and gets deeper into cited research than the others.

I hope I have the opportunity to see a few more presentations I missed between the video cutting out and having other things I needed to do during the weekend.
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Joanne31 October 2011 at 09:13
Dr Maloney has worked long and hard on critique of studies that are thought to support IDSA restrictive opinions her presentation on the ILADS website that she never got to present at the IDSA review hearing is excellent.
It was good to here at the ILADS conference Dr Cameron also getting involved with looking at existing studies which support persistence and ILADS views.
Steven Phillips presentation to IDSA review was another useful resource where he quotes 25 studies supporting seronegativity and persistent infection in which on 18 occasions the authors of the IDSA disputed guidelines were involved in those studies.
I am looking forward to the revised ILADS guidelines.
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Joanne2 November 2011 at 16:23
Notes on Horowitz presentation on Babesia from Lyme net
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=112222;p=0

Dr Jones Gestational Lyme
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/112243

Pain management
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/112236

Integrative medicine
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/112248

Mold and chemical sensitivities
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/112279
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Seibertneurolyme4 November 2011 at 21:47
Thanks for posting the babesia video.

Unfortunately hubby is one of those with so far intractable babesiosis. He has tried all the meds suggested including cryptolepis at 3 times the dose suggested in the video. He recently tried pulsing babesia meds and lasted for 4 1/2 days before symptoms became intolerable -- but he only lasted 1 1/2 days last month so maybe we are making progress. For him the first symptoms to come back are dry heaves and increased nausea and vomiting and Parkinsonian tremors.

We are going to be adding in some new herbs soon to his doxycycline, levaquin, lariam, malarone, artemisinin and diflucan (for babs). He will also be switching the diflucan to flagyl.

Hubby was not tested for WA-1 for the first 10 years he was ill -- we are in Virginia. But as Dr H stated that species of babesia is definitely on the East coast -- hubby's titer was 1:2056

Again, thanks for the video.

Bea Seibert
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Joanne5 November 2011 at 22:01
Hi Bea
Thanks for your comment hope you find something soon that really helps kick his Babesia
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Seibertneurolyme18 March 2012 at 03:20
Joanne,

A fellow lymie recently directed me to this blog post. Thought I should add an update. In December, 2011 after 12 months of intensive babesia treatment which included 6 rounds of IV clindamycin and quinine plus many other different protocols a bloodslide from Clongen lab still showed hubby to have babesia.

We decided to change the protocol once again. Hubby continued on doxycycline, flagyl and high dose malarone daily. He switched artemisinin to 3 days weekly and continued with high dose lariam one day weekly. He added in 2 new items -- sida acuta herbal tincture at 1 teaspoon 3 times daily and fairly high dose ivermectin (from Tractor Supply but approved by LLMD) 3 days weekly (non art days). After about 6 weeks on this protocol we decided to go out on a limb and stop all antibiotics, antimalarials, antiparasitics and killing herbs for the first time in over 3 years.

We are still in shock. It has been 3 weeks now and so far hubby has not crashed. He is not well, but symptoms that are returning seem more related to the WBC pathogen which is still unidentified and probably some residual lyme.

But so far no obvious babesia symptoms. We plan to wait another 1 - 3 weeks and do some more testing with at least 2 or 3 different labs.

I just wanted to post this update so that others would know that there is hope of getting rid of babesia even when you have had it for 11 years as hubby did. It was first seen on a bloodslide by the old Bowen lab in 2002 about a year after he first got sick.

High dose multiple meds may be required and it may take trial and error, but there is hope.

Bea Seibert
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Joanne18 March 2012 at 22:23
Hi Bea Many thanks for sharing this.
I do hope that he continues to improve but if not it sounds that you are in good hands with treatment so lets hope this is the beginning of the end of his illness.
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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