julia newton newcastle

[Gingergrrl]

I've been digging around on the web for the last 6 months looking at treatment options, doctors, etc.. and decided it's going to take me screaming bloody murder to get anything done around here.

So in your opinion, who are the top 3 docs in the US for this condition?

@LHG I just wanted to commend you on being such a good advocate and loving wife for your husband and not to give up hope. I agree that it often takes "screaming bloody murder" to get anything done with getting a doctor to listen to you so this is not always a bad thing!

As far as the top three docs in the US, it is hard to say b/c each have slightly different focuses. I recently had my first appt at Open Medicine Institute (in Northern California) and was very happy with the testing and care that I received. For me it was a 6-7 hour drive and well worth it. I have not been to any other ME/CFS specialists so I cannot speak of others on a personal basis but am sure that others will chime in.

Also, look at the section of the forum on doctors or do a Google site search and you will find a lot of info. Best wishes to you and your husband.

ETA: I noticed in your original post that you said you live in Scotland but are American. Do you have family in a certain part of the US b/c if so, staying with them could eliminate cost of hotels and might help you narrow down which area to see a specialist.

 

[Mark]

@Mark Besides Lyme, I was wondering if you have been tested for the other typical viruses (EBV, HHV-6, CMV, etc) Sleep apnea could be co-morbid with CFS or totally separate cause of your issues so just want to make sure you do not miss something crucial! Have you had an overnight sleep study in a sleep lab? My husband has sleep apnea (but not due to nose polyps like you said) so I am somewhat familiar with it. Best wishes getting the right diagnosis and treatment.

No overnight study, it seems these days in the UK they give you an oximeter you can use at home...and then there's another similar solution I think that measures brainwave activity, also that you can use at home. Seemed to work very well in my case at least: quite sufficient to prove sleep apnea anyway.

I don't think, in my case, that infection with one of those viruses is a likely explanation, but that's among the things I'll pursue a little later after I've seen how things go with the current track we're pursuing. I think a bacterial or fungal infection is more likely for me so that's what I'm looking into right now. Thanks for the suggestion though...it goes on the list of things to follow up on...

 

[SOC]

For example, my husband seems to have OI type symptoms but the GP isn't sure how to treat these symptoms taking into consideration all the other symptoms.

You could try taking your GP the ME/CFS Primer for Clinical Practitioners. It has a lot of info about the condition and potential treatments. It's weak on immunology and pathogen treatments, imo, but decent for a lot of other symptoms. In particular, Section 5:8 on page 24 talks about OI in ME/CFS and discusses some treatments.

Perhaps if you could get your husband's OI under better control, he would be better able to travel.

So in your opinion, who are the top 3 docs in the US for this condition? With my husband's "temperature issues" we're thankful we're in a temperate climate where it doesn't get much above 70. If we were in Texas right now or any of the other locations we've lived, he'd not be able to leave the house. But I'm planning for the future and feel that ultimately, we'll need to move back for the best care.

If I were in your shoes, I'd be looking at one of the ME/CFS specialist clinics like INIM (Dr Klimas, Dr Rey, Dr Vera) or OMI (Dr Kogelnik, Dr Kaufman). The senior docs in those clinics are not taking new patients, but the new docs are (currently). Be prepared to wait several months for an appt.

INIM is in Miami/Ft Lauderdale, which is most certainly NOT a temperate climate.

I think Dr DeMeirleir, who works in both Brussels Belgium and Reno US, might also be a good choice.

There are other good doctors, of course. Part of what "good" means to any patient is whether that doc has a focus consistent with your symptoms. Both INIM and OMI provide a wide range of treatments which is one reason I recommend them.

 

[lazzlazz]

I don't know much about Dr. Myhill, but she she's done some of the research on mitochondrial problems in CFS. She's in Wales, and you can order tests (most only if you're in the UK) from her website, which is pretty comprehensive. She writes "“a detailed letter of advice based on the test result interpreted in the context of all the information provided to me in the questionnaire” (http://drmyhill.co.uk/wiki/Ordering_Tests) which could help guide your current GP in your husband's treatment.
http://drmyhill.co.uk/wiki/Main_Page

I haven't really looked around this website to see what people's opinions are.

This page has a short bio on Dr. Julia Newton; she spoke at the recent London conference.
http://www.investinme.eu/agenda.html

Here's a thread from someone else in the UK looking for treatment
http://forums.phoenixrising.me/inde...rs-near-oxford-or-anywhere.31529/#post-483871

 

[barbc56]

@Mark

You have been through the wringer. No fun and sorry for your woes.

Did I read you correctly that you never had an overnight study and yet they prescribed a CPAP?

I meant to reply earlier so I need to reread some of your posts. Apologies if I misunderstood.

I have a sleep neurologist and I find him very helpful especially since I have other sleep issues.

Take care.

Barb

 

[Firestormm]

You can get overnight sleep studies in hospital. Done it myself last year.

Anyway thought this might be of interest here:

NEWCASTLE RESEARCH CONFERENCE IN NOVEMBER - DATE FOR THE DIARY PLEASE

The ME Association and ME North East will be co-sponsoring a research conference at Gosforth Civic Hall, Newcastle upon Tyne, on Tuesday, November 4.

The event will showcase the varied work of the ME/CFS research unit at Newcastle University and also feature a talk by Professor Stephen Todryk of Northumbria University who is leading a study into immune system responses in ME/CFS, particularly after infection, which is being co-funded by the MEA and Action for ME.

All will be welcome and the cost for admission will be £5. For the moment, this is just a date for you to pencil in to your diaries. We will give out more information as we get it.

 

[Mark]

@Mark

You have been through the wringer. No fun and sorry for your woes.

Did I read you correctly that you never had an overnight study and yet they prescribed a CPAP?

I meant to reply earlier so I need to reread some of your posts. Apologies if I misunderstood.

I have a sleep neurologist and I find him very helpful especially since I have other sleep issues.

Take care.

Barb

Hi Barb, sorry for the delayed reply. What I had was an oximeter which I wore overnight (on my finger) and which recorded the oxygenation level of my blood during the night for later analysis. That analysis found 30 apnea events per hour (ie waking every 2 mins on average) and oxyegnation falling to 94-95%, which was enough to diagnose moderate/severe sleep apnea. I've tried 3 CPAP masks and they have a dramatic effect on sleep quality; I feel wide awake and refreshed when I wake - the problem is that I can't last longer than about 4 hours in them before they are slipping off, or leaking, or making too much noise, and then I either have some bad sleep that still leaves me feeling shattered, or no more sleep at all. Still haven't got it right...going to have to try a chinstrap next; I have to pay about £150 for that but it sounds like the next thing to try.

 

[MeSci]

A friend of mine visited her about a year ago. Due to the very long distance she wasn't able to go more than once, but the further tests Julia Newton recommended have had a major impact in persuading her GP to take her seriously and got her on the right track. She's had some major breakthroughs as a result and got a lot of objective findings on tests; she's now seen some very good specialists and she's well on the way to getting a proper diagnosis (I can't say what for confidentiality reasons, and it's not yet definitively confirmed afaik). This after a decade of serious neglect and a lot of insults - she's very ill indeed. I think Julia Newton's clinic is pretty much the best bet that I know of in the UK.

Makes me wonder what is going on here then.

 

[Cheryl M]

Hi. Sorry for the necromancy; I wasn't sure if I should start a new thread or not.

I am due to see Prof Newton in the near future and wondered if anyone had any advice. (Must get my medical history together to show her... Difficult when my printer is broken. Use the library printer? I do hope nobody sees my notes by accident.)

I may be able to report back on my visit if anyone would find that useful.

 

[Hell...Hath...No...Fury..]

She's really nice to talk to. Great if you're seeing her for POTS, but probs won't get much advice for ME.

Be aware that she doesn't have a problem with advocating CBT either, even if you're severe and in a wheelchair.

This bit was a shock to me, even though i'd already read of another members experience of this too. She couldn't understand why someone who's usually bedridden, and talking is the biggest energy drain couldn't go for regular CBT sessions. I was a little wary with her after this.

But that being said she is really pleasant to talk to. I tried a couple of POTS drugs that didn't help and was then wrote off until something new comes along that might help. I got my diagnosis of POTS though at least which was helpful.

Let us know how you get on keep us posted

 

[Cheryl M]

Yes, I can see getting some sort of physical diagnosis at last might be really useful for tackling the DSS. (I definitely have POTS - my GP and I know that already.) I suspect at the moment they think I'm making the whole thing up.

I'll certainly tell you!

 

[Cheryl M]

Apologies for the severe delay in posting. My appointment was... a disappointment! I had prepared a short (i.e. only a few pages) summary of my symptoms and medical history for Prof Newton. At the clinic I filled in a few paper questionnaires and was given an ECG and a poor woman's tilt table test (heart rate is taken as you lie down and after you have stood up for two minutes). Prof Newton said that the tests had not shown POTS so I was being discharged. I said, "But I have suffered POTS in the past to the point of pre-syncope." She smiled and said nothing. I said, "My health is deteriorating rapidly so I will probably have it again in the near future." She smiled and said nothing. She never asked to see my medical history. All I got from the appointment was an instruction to drink salty water for three months and see if that cured me. When it didn't, the short synacthen test was performed (but not too surprisingly came back negative), and that was that. Her remit is obviously limited to patients with POTS.

If anyone is interested, I have also seen Gavin Spickett in Newcastle twice and both times he said I could not have ME because I was depressed.

I have spent the last nine months trying to get an appointment on the NHS with Dr Amolak Bansal. I thought if I jumped through all the hoops (fill in referral form, get GP to do same, get blood tests done, travel to London for appointment with Nurse Chiliringian) I would be allowed to see him, so I was quite surprised when the nurse told me he does not see patients! I asked why in that case they kept him hanging around and she said the nurses ask him for advice. I received a paper diagnosis of ME from Dr Bansal, which was nice, but confusing since I have never met him. (It is also ironic that Bansal could do in no visits what Spickett could not do in two.) Nurse Chiliringian even asked why I still wanted to see him now that I had my diagnosis (er... for treatment??). We decided to try consulting him privately but when we tried to contact him were put through to Chiliringian again! Watch this space.

 

[Jill]

I just want to add to check for hyperparathyriodism. My partner (who has severe ME ) mother started getting the all to familiar symptoms and it turns out she has hyperparathyrioidism which is an easy treat ( glands removed via day surgery). The symptom list is very much like ME. Calcium goes high in the blood and that's the test for it. Parathyroid hormone doesn't necessarily have to go high - it tends to fluctuate.