Hotch
Hotch
- Messages
- 43
- Location
- Sydney nosw Australia
No I didn't have any adverse reactions. I am very fortunate that I don't usually have bad reactions to supplements or medications like some others do.
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Me/cfs doctors in Sydney, Australia
- Thread starter Hotch
- Start date
Hotch
Hotch
- Messages
- 43
- Location
- Sydney nosw Australia
Hi Deuce, Dr Donohoe is a very nice man. It cost me a lot as he talks a lot! I kept having to try and get him back on task which wasn't easy to do. He did a lot of testing, including the "Lyme" test for the Australian version. This test is controversial but when it became available a friend who had come up negative to the usual Lyme testing for 10 years tested positive for the Australian strain (done in I think Melbourne). She then had Iv drugs to treat it and she is great now.
I went a few times to Dr Donohoe and he played around with a few doses of things but I didn't get any benefit. In the end he said he couldn't help me. I believe his specialty is multiple chemical sensitivities type illness and that he is very good with this. I do not have this so he was not the best dr for me.
As it turned out Dr Schloefel did accept me as his patient. I am very very impressed with him. He has done quite a few tests no one else has eg: 24hr holt test. In my first visit he picked up my POTS and it is now much improved! (Donohoe didn't offer me any treatment for my POTS he just told me how a colleague was doing a study on it.
Maybe you could fill me in on what you are having to deal with in your illness. I wish you luck in this tormenting journey.
Cheers HOTCH xx
I went a few times to Dr Donohoe and he played around with a few doses of things but I didn't get any benefit. In the end he said he couldn't help me. I believe his specialty is multiple chemical sensitivities type illness and that he is very good with this. I do not have this so he was not the best dr for me.
As it turned out Dr Schloefel did accept me as his patient. I am very very impressed with him. He has done quite a few tests no one else has eg: 24hr holt test. In my first visit he picked up my POTS and it is now much improved! (Donohoe didn't offer me any treatment for my POTS he just told me how a colleague was doing a study on it.
Maybe you could fill me in on what you are having to deal with in your illness. I wish you luck in this tormenting journey.
Cheers HOTCH xx
Thanks Hotch I appreciate your response.
Well my story goes like this:
Im 44 now. I first noticed problems at 18 so that makes me 26 years into CFS. I can exactly recall the problem. During my final exams at school I stupidly crammed for about 3 weeks of study by adopting a naive tactic of staying awake all night and going to bed at 7am + taking a lot of "no doz" caffeine pills. At the end of it was exhausted and felt like I had a flu which has never gone away. Was very stupid of me.
So far I saw:
1) Professor Andrew Lloyd at Prince of Wales, hospital (Sydney) who diagnosed me in 1997 with CFS. His recommendation was graded exercise. This didn't work.
2) Dr Enlander via skype - put me on MAF878 plus some other supps. Perhaps I didn't do MAF878 for long enough but I gave up on this as I didn't notice any result.
3) Ian Rafter - a retired doctor in Manly, Sydney who used to specialise in CFS and now assists with integrative stuff. He asked me to get a bunch of blood tests from a practising doctor and his approach was to clean the gut with probiotics and other supps. I tried this but didn't notice any benefit.
4) Dr Peter Dobie at Pymble Grove. He ordered adrenal tests, mould sensitivity tests, iodine, rickets etc. He also ordered Lyme tests from Germany and from an Australian lab in Sydney. German test came up negative and Sydney one came up unclear either way. He said he thought it was Lyme anyway and put me on long term anti biotics. I gave up on this because long term use of anti biotics is the one treatment I'm not comfortable about doing and given the lyme tests were not positive I didn't feel this was right for me. I tried the anti biotics for a month but then was scarred off by many other doctors telling me the dangers of long term anti biotic uses.
5) Fatigue Centre in Sydney - tried this as well. Was CBT and GET. Decided to keep an open mind about this stuff given the controversy. Can confirm it was a complete waste of time and the exercise made things worse in the short term.
My real issues apart from obvious horrible fatigue are brain fog and cramped muscles and insomnia
Any advice of someone to see or things to do would be great.
Cheers
Well my story goes like this:
Im 44 now. I first noticed problems at 18 so that makes me 26 years into CFS. I can exactly recall the problem. During my final exams at school I stupidly crammed for about 3 weeks of study by adopting a naive tactic of staying awake all night and going to bed at 7am + taking a lot of "no doz" caffeine pills. At the end of it was exhausted and felt like I had a flu which has never gone away. Was very stupid of me.
So far I saw:
1) Professor Andrew Lloyd at Prince of Wales, hospital (Sydney) who diagnosed me in 1997 with CFS. His recommendation was graded exercise. This didn't work.
2) Dr Enlander via skype - put me on MAF878 plus some other supps. Perhaps I didn't do MAF878 for long enough but I gave up on this as I didn't notice any result.
3) Ian Rafter - a retired doctor in Manly, Sydney who used to specialise in CFS and now assists with integrative stuff. He asked me to get a bunch of blood tests from a practising doctor and his approach was to clean the gut with probiotics and other supps. I tried this but didn't notice any benefit.
4) Dr Peter Dobie at Pymble Grove. He ordered adrenal tests, mould sensitivity tests, iodine, rickets etc. He also ordered Lyme tests from Germany and from an Australian lab in Sydney. German test came up negative and Sydney one came up unclear either way. He said he thought it was Lyme anyway and put me on long term anti biotics. I gave up on this because long term use of anti biotics is the one treatment I'm not comfortable about doing and given the lyme tests were not positive I didn't feel this was right for me. I tried the anti biotics for a month but then was scarred off by many other doctors telling me the dangers of long term anti biotic uses.
5) Fatigue Centre in Sydney - tried this as well. Was CBT and GET. Decided to keep an open mind about this stuff given the controversy. Can confirm it was a complete waste of time and the exercise made things worse in the short term.
My real issues apart from obvious horrible fatigue are brain fog and cramped muscles and insomnia
Any advice of someone to see or things to do would be great.
Cheers
Hey @deuce - just a quick one to let you know that I’m currently seeing Dr Donohue, he is very thorough and super smart but my symptom picture is more immune dysregulation/ liver + detox issues. He appears to have correctly diagnosed me with autoimmune hepatitis after a couple of consults, so
I’ll keep working with him to try to peel back the never ending layers of my stinky health onion!
I had also considered the CFS Discovery Centre, because it’s run by Dr Don Lewis and he’s connected in to Chris Armstrong who’s working with Ron Davis/ OMF. https://www.melbournebioanalytics.org/about/meet-the-researchers/
I’ve also hear good things about Dr Christabelle Yeoh, who is Sydney based and used to work at the Breakspear Clinic in the UK. Not sure if she specializes in CFS or just complex chronic illness, but may be worth a look.
https://invitationtohealth.com.au/people/dr-christabelle-yeoh/
Hope that’s helpful
I’ll keep working with him to try to peel back the never ending layers of my stinky health onion!
I had also considered the CFS Discovery Centre, because it’s run by Dr Don Lewis and he’s connected in to Chris Armstrong who’s working with Ron Davis/ OMF. https://www.melbournebioanalytics.org/about/meet-the-researchers/
I’ve also hear good things about Dr Christabelle Yeoh, who is Sydney based and used to work at the Breakspear Clinic in the UK. Not sure if she specializes in CFS or just complex chronic illness, but may be worth a look.
https://invitationtohealth.com.au/people/dr-christabelle-yeoh/
Hope that’s helpful
For anyone down under with MCS Multiple Chemical Sensitivity... this resource seems to be top notch..
http://www.asehaqld.org.au/index.ph...ns-of-psychosomatic-labelling-of-mcs-patients
This particular link is about psychosomatic lablelling but this is just the door to many other good articles| this site addresses cfs ..fibro issues too here is a taste
Comparative investigations in referral clinic populations have reported that up to
“In studies that assessed patients with a single unexplained clinical condition for the presence of at least one additional syndrome found that,
Seems Australia is light years ahead... often wish I lived there...hope this is of use
http://www.asehaqld.org.au/index.ph...ns-of-psychosomatic-labelling-of-mcs-patients
This particular link is about psychosomatic lablelling but this is just the door to many other good articles| this site addresses cfs ..fibro issues too here is a taste
Comparative investigations in referral clinic populations have reported that up to
- 70% of patients with fibromyalgia meet the case definition for the chronic fatigue syndrome and, conversely, that
- 35% to 70% of patients with the chronic fatigue syndrome have fibromyalgia.
- Moreover, 13% to 18% of patients with temporomandibular disorder meet fibromyalgia criteria and
- 75% of patients with fibromyalgia satisfy the case definition for temporomandibular disorder.
- Other painful conditions, such as tension headache, also commonly co-occur with fibromyalgia.
- Furthermore, 32% to 80% of patients with fibromyalgia, 58% to 92% of patients with the chronic fatigue syndrome, and 64% of patients with temporomandibular disorder also have IBS.
- Conversely, 32% to 65% of those with IBS meet the criteria for fibromyalgia.
- Moreover, one study showed that the symptoms reported by patients with fibromyalgia and patients with interstitial cystitis were more similar to each other than to those reported by healthy controls.
- Finally, in 53% to 67% of persons with the chronic fatigue syndrome, illness worsens with exposure to various chemicals, and
- 55% of persons with fibromyalgia have symptoms consistent with multiple chemical sensitivity.
- In contrast, 30% of patients with multiple chemical sensitivity meet the criteria for the chronic fatigue syndrome.
“In studies that assessed patients with a single unexplained clinical condition for the presence of at least one additional syndrome found that,
- among patients with fibromyalgia,
- 21% to 80% have coexisting chronic fatigue syndrome (39, 43, 61),
- 36% to 60% have IBS (8, 27, 32, 40, 43, 48, 51),
- 10% to 80% have headaches (27, 32, 43, 57),
- 75% have mandibular dysfunction (35), and
- 33% have multiple chemical sensitivity (54).
- Many patients with the chronic fatigue syndrome also have
- IBS (63%) (49),
- multiple chemical sensitivity (41%) (64), and
- other unexplained illnesses (67).
- Of interest, these studies suggest that sex may influence the co-occurrence of unexplained clinical conditions. For example,
- IBS is more common among women (40%) than men (14%) with fibromyalgia (66), and
- fibromyalgia occurs more often in women (36%) than men (12%) with the chronic fatigue syndrome (12).”
Seems Australia is light years ahead... often wish I lived there...hope this is of use
Hotch
Hotch
- Messages
- 43
- Location
- Sydney nosw Australia
Hi Deuce, sorry I've taken so long to respond.
Looks like you have done a good job of seeing a varied cohort of doctors. It's such a tough gig to find a doctor who suits our particular circumstances.
I understand how you feel about long term antibiotics. I was on tetracycline antibiotics for 10 years for acne. I believe that this may have set me up to get CFS by disturbing my gut bacteria.
Have you been tested for Orthostatic Intolerance? I ask because it is very common in CFS and often overlooked AND It can often be treated successfully. Mestinon has helped me. The first I heard about OI was about 3 years ago and I instantly knew I I was pretty sure I had it and wanted to put together info for a cardiologist I was going to see. I bought a blood pressure machine and did Donohoe is very liberal and really listens to the patient. I wish I had done more research about treatments for it before I saw him. I believe if I had suggested trying Mestinon he may have gone with it. You can do a home test if you
Looks like you have done a good job of seeing a varied cohort of doctors. It's such a tough gig to find a doctor who suits our particular circumstances.
I understand how you feel about long term antibiotics. I was on tetracycline antibiotics for 10 years for acne. I believe that this may have set me up to get CFS by disturbing my gut bacteria.
Have you been tested for Orthostatic Intolerance? I ask because it is very common in CFS and often overlooked AND It can often be treated successfully. Mestinon has helped me. The first I heard about OI was about 3 years ago and I instantly knew I I was pretty sure I had it and wanted to put together info for a cardiologist I was going to see. I bought a blood pressure machine and did Donohoe is very liberal and really listens to the patient. I wish I had done more research about treatments for it before I saw him. I believe if I had suggested trying Mestinon he may have gone with it. You can do a home test if you
Hotch
Hotch
- Messages
- 43
- Location
- Sydney nosw Australia
Sorry, a bit jumbled Indicative of my brainfog. Will correct tomorrow.
knackers323
Senior Member
- Messages
- 1,625
@Hotch what does schloeffel think about the role of the gut and biodome in your condition?
Hotch
Hotch
- Messages
- 43
- Location
- Sydney nosw Australia
He hasn't gone there with me yet.
Hotch
Hotch
- Messages
- 43
- Location
- Sydney nosw Australia
FYI on "Insight" on SBS this coming tues night 16th October they are discussing CFS. Dr Donohoe is the first Doctor talking in the preview. Here's hoping this brings some more awareness!
Mel9
Senior Member
- Messages
- 995
- Location
- NSW Australia
I have been seeing Dr Mark Donohoe for 12 months and would recommend him. He is a very pleasant and caring doctor. He does lots of tests and found a number of new problems I wasn’t aware of ... some of which he was able to treat satisfactorily. I found him to be very thorough and knowledgeable.
I initially attended his surgery for consultations but more recently switched to phone consultations. There is parking nearby. As he gives each patient the amount of time they need he is frequently running quite late for appointments. The only upside to this is that you will be given as much time as you need and have his full attention for that time.
Lead time for initial appointment is 2-3 months.
Like all CFS specialist doctors he is expensive. I can see that he has put a lot of work into gaining his knowledge and keeping up to date, so I don’t begrudge that.
I initially attended his surgery for consultations but more recently switched to phone consultations. There is parking nearby. As he gives each patient the amount of time they need he is frequently running quite late for appointments. The only upside to this is that you will be given as much time as you need and have his full attention for that time.
Lead time for initial appointment is 2-3 months.
Like all CFS specialist doctors he is expensive. I can see that he has put a lot of work into gaining his knowledge and keeping up to date, so I don’t begrudge that.
"
Like all CFS specialist doctors he is expensive. I can see that he has put a lot of work into gaining his knowledge and keeping up to date, so I don’t begrudge that."
I am sure many would pay what ever they had to get well I know I would. Travelling to another continent for care is beyond what most could afford. I doubt I could do the trip even if I were independently wealthy. I am hoping we get some world wide expertise in the near future.
Like all CFS specialist doctors he is expensive. I can see that he has put a lot of work into gaining his knowledge and keeping up to date, so I don’t begrudge that."
I am sure many would pay what ever they had to get well I know I would. Travelling to another continent for care is beyond what most could afford. I doubt I could do the trip even if I were independently wealthy. I am hoping we get some world wide expertise in the near future.