Discussion in 'ME/CFS Doctors' started by knackers323, Feb 21, 2011.
has anyone been to this guy?
Don Lewis? I think Tony may have??* (Then onto De Meirleir via Dr Lewis?)
*Apologies to Tony if I've got that wrong. Perhaps he'll join in here, or anyone else who's seen Dr Lewis.
Hi knackers323, I have not been to see him, but I know someone who has. He is good but not cheap, and he is now training two new doctors to treat ME/CFS. Most importantly, he is in close collaboration with KDM, who comes to Melbourne regularly. Bye, Alex
Great news he's training others Alex.
I heard he was a very busy man. This sharing of experience and knowledge is vital, he must be a decent man too!
(Actually I have heard great things about him for a number of years.)
Hi Anne, yep, you got it right.. I've seen him since 2002 and with KDM since 09. Dr Lewis is very committed, does his best and more. It's great that the two new docs have been sitting in on consults with him for months, so they aren't totally new to the treatment ideas.
thanks for the response guys. do you know if he is interested at things like long term antibiotics for chronic underlying infections? eg. mycoplasma. thanks
I'm not sure about long term a/b's but he does use pulsed a/b's with probiotics in between, depending on test results.
I have been a patient of Dr Lewis since 2009 also. I could not agree more with the observation made by Tony. He is interested in the science, and his patients well being. He is very dedicated, compassionate and a lovely human being. I was fortunate to have a great GP, but I was having to educate him. When I sat down with Dr Lewis for the first time - I felt a great weight lift. Here was a doctor that not only understood all about ME CFS, but had knowledge about most of my troubling symptoms and with a nod of the head, to each one -acknowledging how common they were and explaining the biology associated with them. I no longer felt like I had to actually prove I had these strange symptoms. In fact, it probably would have been bizzare to him, had I not reported such. Finally I could sit back and be a patient and not be focused on research, educating my GP and driving the consult. After many years of having done this - to be able to give this up, was wonderful and gave me hope that I might make real in roads into clawing back some health. On that level, I have not been disappointed.
I have just been taken on as a new patient at Dr Lewis' clinic, and will be seeing one of the new doctors. So far I've just seen the nurse for the first appointment. I've just had the required lactose intolerance and fructose intolerance tests done - it had never seriously occurred to me that I might be fructose intolerant, I really knew nothing about the condition. Turns out it's a big problem for me - even just this little bit of information is enormously helpful. I'm looking forward to my first appointment with one of the new doctors next week.
It's great to have some feedback from a patient of one of the new doctors.
I guess you're on a low fructose diet now!
Let us know how you get on with your treatment.
That's pretty much the impression I have had of Dr Lewis from hearing others speak of him.
How wonderful to feel validated, and taken care of as a patient!
Hope you'll report more of your treatment, and progress
So you will learn if you are fructose intolerant? I think you are intolerant if your body always had a negative reaction to "high" fructose foods. Otherwise I think it is supposed to be called maladsorption or something to that effect.
You are absolutely right - sorry for my inaccurate reporting. I have had the malabsorption tests done. I have negative lactose malabsorption, but have big fructose malabsorption problems. More tests yet to come.
Yeah that fructose can be bad news. Malabsorption is what's happening to many of us. From what I remember intolerance is a very rare genetic condition. For us malabsorbers we can eat a little bit of fructose, just not too much. We need the glucose to even up the absorption in the gut. I kicked off a thread about it here somewhere a little while back with some links to studies etc.
Another person has also mentioned to me having a good initial consult with one of the new docs in the practice. They're all working together on pretty much the same page.
Thank you Tony. I looked up your previous posts and checked out the links and have downloaded some info to read. Cheers.
The malabsorption itself is likely to be as a result of the disease. I tested positive on the lactose malabsorption test (though high hydrogen background was noted also), but milk was never a problem for me as a child.
I have considered seeing Dr Lewis, but his fees are expensive and I live in another state.
Can anyone message me information on his antibiotic/pro-biotic treatment protocol?
Snow - his treatment protocol depends on the specific gut bugs he has identified - so, protocols are designed accordingly.
Does anyone know what lab test Dr Lewis uses to identify which gut bugs need addressing?
Be wary of Dr Lewis's preferred dietitian. She's more into sports nutrition. I was flabbergasted when she suggested rye bread after knowing I am highly intolerant to wheat.
Does she not know that me/cfs sufferers should steer away from gluten, which is present in wheat, oats, barley and rye? Better to source around for a dietitian who is knowledgeable
in menu planning for me/cfs. Please let me know if you come across one. Thanks.
Hi Anne, two tests that I know of. One is a test for parasites by stool test at Histopath in Sydney, the other tests for bacterial types and counts via stool test. The second is done by Bioscreen at Melb Uni. From memory the parasite test was free, covered by Medicare here and the Bioscreen test is about $280.
Zuriel, you could try the Sue Shepherd's group at Box Hill, Glen Iris or Bundoora. Shepherd has published on fructose mal. http://shepherdworks.com.au/services/book-an-appointment
I've no experience with them though...
You can also try a Google Site Search
Separate names with a comma.