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Ben and Claire's adventure to Davis-Dafoe land!

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hey guys,

Thanks for your lovely comments. I hope you enjoyed the blog!

To answer a couple questions-I have regressed somewhat since the US. Back to being bedbound etc. I think the daily saline and klonopin were helping way more than I thought, even though I still felt very bad most of the time!

I also agree about the metric of using speech as severity. In some cases, obviously it says a lot (no pun), but in others I am not so sure. I come across WAY better than I actually am, probably because I can speak. I know that because I can almost speak as much as a couple years ago whe I was moderate, but in hindsight I was positively healthy then compared to where I am now. Ask me to hold my phone unaided for more than 2 seconds, walk down the stairs (without saline) and welcome to shake-city-I just can't do it. Whereas some people I have talked to speech is a huge issue, despite being able to do much more physical things than myself. So yes, its all individual.

That said I am in a better position now having access to Dr's who do not question. I need to figure how to get prescriptions from them to the Uk however-CVS do not ship abroad I believe so if anyonehas experience with that, it would be helpful! I could just use online pharmacies but these are sometimes hit and miss...

Anyway, your comments have kept me going and writing so thankyou to all of you. Hopefully it gave some insight into a crazy trip, and the wonderful people in it :)


B
 
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Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
@Ben Howell does OMF getting charity status here mean OMF would have a physical research outpost in the UK, or would it be simply administrative so we can donate money more easily?

Hey @Jenny TipsforME

Not to start with, but that could be a future (and amazingly exciting) development. Initially its more to do with funding and people being able to donate to a UK charity which is a barrier to some businesses and people in the UK currently. I believe it would mean all donations would be eligible for gift aid too.

We are working on it!


B
 

dangermouse

Senior Member
Messages
430
@Ben Howell Really sorry to hear that you're bedbound, I probably don't need to tell you to try and rest and be kind to yourself, but I hope that you can and that you improve.

Regarding speech, I think that I can sometimes seem to be much better than I actually am. I often can't word find though and kinda stammer or slur (that's maybe not a good description) and I often forget what I'm saying. Another issue is that I can't concentrate on a conversation if there are other conversations going on nearby, or if a TV or music is on in the background. I'm also good at painting a smile on my face, though when I'm suffering PEM my eyes are a dead giveaway, they look lifeless.

I hear you re: shake city. I'm just so glad that we don't have to sign for as much now....I have particularly bad tremors that are unpredictable that affect my hands, it's been a cause of much embarrassment over the years.

As I'm mostly housebound at the moment and I've had this illness eleven years (am so desperate for proper treatment or a cure) you're posts have been like a little piece of heaven, providing real life insight and hope and a few laughs too.

Thanks very much.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
@Ben Howell Really sorry to hear that you're bedbound, I probably don't need to tell you to try and rest and be kind to yourself, but I hope that you can and that you improve.

Regarding speech, I think that I can sometimes seem to be much better than I actually am. I often can't word find though and kinda stammer or slur (that's maybe not a good description) and I often forget what I'm saying. Another issue is that I can't concentrate on a conversation if there are other conversations going on nearby, or if a TV or music is on in the background. I'm also good at painting a smile on my face, though when I'm suffering PEM my eyes are a dead giveaway, they look lifeless.

I hear you re: shake city. I'm just so glad that we don't have to sign for as much now....I have particularly bad tremors that are unpredictable that affect my hands, it's been a cause of much embarrassment over the years.

As I'm mostly housebound at the moment and I've had this illness eleven years (am so desperate for proper treatment or a cure) you're posts have been like a little piece of heaven, providing real life insight and hope and a few laughs too.

Thanks very much.

Sorry to hear that @dangermouse . I can empathise for sure. Thankyou for the lovely words.


B
 

Laelia

Senior Member
Messages
243
Location
UK
Hi @Ben Howell. I'm new around here! I just wanted to say hello and thank you for this very special thread you have created. It has been wonderful to be able to follow your and Claire’s adventures to Davis-Dafoe land! I think if there were a vote for best ever thread on PR this would win hands down :)

I am so sorry to hear that you have regressed since returning to the UK. This is very sad to hear. I hope you can organise the prescriptions that you need and that you feel stronger again soon. Please take good care of yourself. We're all routing for you.
 

Nickster

Senior Member
Messages
308
Location
Los Angeles, CA
Hey guys,

Thanks for your lovely comments. I hope you enjoyed the blog!

To answer a couple questions-I have regressed somewhat since the US. Back to being bedbound etc. I think the daily saline and klonopin were helping way more than I thought, even though I still felt very bad most of the time!

I also agree about the metric of using speech as severity. In some cases, obviously it says a lot (no pun), but in others I am not so sure. I come across WAY better than I actually am, probably because I can speak. I know that because I can almost speak as much as a couple years ago whe I was moderate, but in hindsight I was positively healthy then compared to where I am now. Ask me to hold my phone unaided for more than 2 seconds, walk down the stairs (without saline) and welcome to shake-city-I just can't do it. Whereas some people I have talked to speech is a huge issue, despite being able to do much more physical things than myself. So yes, its all individual.

That said I am in a better position now having access to Dr's who do not question. I need to figure how to get prescriptions from them to the Uk however-CVS do not ship abroad I believe so if anyonehas experience with that, it would be helpful! I could just use online pharmacies but these are sometimes hit and miss...

Anyway, your comments have kept me going and writing so thankyou to all of you. Hopefully it gave some insight into a crazy trip, and the wonderful people in it :)


B
Ben your trip and blog have given me and my son who has severe cfs such hope. You have courage to make such a big trip, the joy of new relationships and your humor shows in your writing. Keep up the fight! But first get some rest. Were all pulling for you!
 

Nielk

Senior Member
Messages
6,970
I'm glad you had the opportunity, @Ben Howell to take this successful trip to the states - to go through testing and treatment recommendations at OMI.

I think it would be helpful for patients to read more details of what type of testing were done there and what specific recommendations for treatment you received.

Would you mind sharing that with us?
 

Gingergrrl

Senior Member
Messages
16,171
I hope you enjoyed the blog!

Absolutely thoroughly loved the blog and wish it could keep going! Will you be traveling back to CA in the future?

I need to figure how to get prescriptions from them to the Uk however-CVS do not ship abroad I believe so if anyonehas experience with that, it would be helpful! I could just use online pharmacies but these are sometimes hit and miss...

I wish I had a suggestion for this and hoping that OMI can help you come up w/a plan. I've had times that my doctor there prescribed something and my insurance said no, and we had to appeal and jump through all kinds of hoops to make it happen, so can't even imagine doing this from another country. But you are a fighter and no doubt you will find a way!
 
Messages
38
Yep, can relate to this well...



Yep, relate to this too LOL


I was wondering the same thing as Jenny and am hoping that you will be able to continue w/Dr. Chheda's treatment plan from the UK?


Same here. Yesterday, today.. Safeway, and Coram in my case. I live near to your hosts here. I think some of us learn the hard way—sometimes you have to get very aggressive in order to get things done. Not sure why, but appealing to professionalism and some sense of importance doesn't work. Sigh. True, though.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I need to figure how to get prescriptions from them to the Uk however-CVS do not ship abroad I believe so if anyonehas experience with that, it would be helpful! I could just use online pharmacies but these are sometimes hit and miss...
Hi, Ben,

Thanks so much for this thread - I hope that the trip and the reports on it haven't taken too much toll and that you will soon recover to at least your previous level.

I use an online site for medications with no problems - have done for years, although there was a temporary hiccup a while ago, but it's OK again now.

There are several threads on these, for example:
http://forums.phoenixrising.me/inde...iable-and-trustworthy-online-pharmacies.8113/
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@Ben Howell As far as I know of patients who have US Drs they get their prescriptions filled in the US and then bring them home, That's not much help for you now you are here. Other than that the options are, as you say, online pharmacies or to find a private Dr who will re write the prescription for you to a UK private script.

There are lots of private GPs around, but if anyone will do this I don't know. I have a friend in Liverpool who has a private Dr who is very open minded - if it helps PM me and I can put you in touch.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Hi @Ben Howell. I'm new around here! I just wanted to say hello and thank you for this very special thread you have created. It has been wonderful to be able to follow your and Claire’s adventures to Davis-Dafoe land! I think if there were a vote for best ever thread on PR this would win hands down :)

I am so sorry to hear that you have regressed since returning to the UK. This is very sad to hear. I hope you can organise the prescriptions that you need and that you feel stronger again soon. Please take good care of yourself. We're all routing for you.

Welcome to the forum @Laelia !

Thankyou for your kind words!

Ben your trip and blog have given me and my son who has severe cfs such hope. You have courage to make such a big trip, the joy of new relationships and your humor shows in your writing. Keep up the fight! But first get some rest. Were all pulling for you!

Hi @Nickster

Im so glad for that. Tell your son to hang in there and keep up to date with OMF and Prof Davis and Stanford. They are close now! Thanks for your words!

I'm glad you had the opportunity, @Ben Howell to take this successful trip to the states - to go through testing and treatment recommendations at OMI.

I think it would be helpful for patients to read more details of what type of testing were done there and what specific recommendations for treatment you received.

Would you mind sharing that with us?

Hi @Nielk

I have deliberately avoided mentioning this-for a couple reasons. Anyone wanting a specific overview of what I had is welcome to PM me,
however it was very basic things- ADH, vital panels, Lyme western blot, ACTH/Cortisol, etc. Nothing exciting and certainly nothing that would make me significantly better IMO. I went more for the opportunity and ability to try different things that may make a difference. Blood volume is one thing to work on for me, though thats hard without IV, and I cannot replicate the effect with salt water, electrolytes etc.

But in the UK, we have no options except for passive aggressive GET and CBT so its great to have Dr's with experience on BASIC tests that should be run over here but are not.

Absolutely thoroughly loved the blog and wish it could keep going! Will you be traveling back to CA in the future?

Thanks @Gingergrrl

Yes I certainly plan too. Depending on health :)


I wish I had a suggestion for this and hoping that OMI can help you come up w/a plan. I've had times that my doctor there prescribed something and my insurance said no, and we had to appeal and jump through all kinds of hoops to make it happen, so can't even imagine doing this from another country. But you are a fighter and no doubt you will find a way!

Hi, Ben,

Thanks so much for this thread - I hope that the trip and the reports on it haven't taken too much toll and that you will soon recover to at least your previous level.

I use an online site for medications with no problems - have done for years, although there was a temporary hiccup a while ago, but it's OK again now.

There are several threads on these, for example:
http://forums.phoenixrising.me/inde...iable-and-trustworthy-online-pharmacies.8113/

Hi @MeSci

Thanks for the kind words. That is a helpful thread-thanks!

Reading and comprehension is hard when foggy. I thought
you were talking about the Bay Area and earthquakes. :lol:

Thanks again @Ben Howell for your talented writing and sharing your experiences with us, and for being our OMF Correspondent! :) Rest. I hope you feel better soon.

Thanks @Jennifer J

Haha-no earthquakes just a motherload of RAIN!


@Ben Howell As far as I know of patients who have US Drs they get their prescriptions filled in the US and then bring them home, That's not much help for you now you are here. Other than that the options are, as you say, online pharmacies or to find a private Dr who will re write the prescription for you to a UK private script.

There are lots of private GPs around, but if anyone will do this I don't know. I have a friend in Liverpool who has a private Dr who is very open minded - if it helps PM me and I can put you in touch.

Thanks @justy

I have the lovely Dr Myhill here, though I think like yourself she has nothing to offer anymore, and I feel like she has become increasingly conservative.


B
 
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TreePerson

Senior Member
Messages
292
Location
U.K.
Hi @Ben Howell
Is it impossible to get IV in the UK? If you had a sympathetic GP or got referred to the right person? Or is just something that doesn't happen here? I'm in the UK too and have had almost no treatment. But I gave up trying quite a long time ago. Did you get tested for blood volume? That's something I would really love to get done.
I hope at least you will be able to explain to you GP the treatment you've had and how it's helped you.
Sorry for all the questions. Please dont answer until you are feeling stronger. X
 

Binkie4

Senior Member
Messages
644
@TreePerson @ Ben Howell

I have exactly the same questions. I have tried to talk to my GP about blood volume but he has no knowledge about how it can be measured. I have read of a Daxor machine but don't know if we have one in the UK, or any other way of measuring it. ( I think I did read something complicated once but cannot remember)

My GP actually said I would need to be cut and held upside down for the blood to run so it could be measured. I know- so insulting.

I have also asked about saline infusions and expanding blood volume. He told me I would need to be admitted to hospital if I were to have an infusion. He had no interest in whether this might help. No doubt cost would be expensive in a private hospital.

I have also become interested in the haemorrological properties of blood. Red blood cells should be pliable to get through narrow capillaries but ME patients' red blood cells might be stiff. ( Leslie Simpson)

Really thinking of help from saline though.

@ Ben Howell - please don't reply till you are feeling much better.
 

TreePerson

Senior Member
Messages
292
Location
U.K.
@Binkie4 I remember reading something years ago about people having their blood volume measured. It was done in Australia. And that's literally all I can remember except it might have involved an electron microscope!

That is interesting about the stiff red blood cells. I get a real sense of pressure in my legs as if blood is trying to flow into places it can't get to. I also get a crawling sensation under my skin at night which I think is caused by my body trying to sweat and being unable to. It's as if the blood can't get to the surface. I have attributed this to some kind of failing in the small capillaries.
 

Binkie4

Senior Member
Messages
644
http://www.daxor.com/healthcare-professionals/bv-measure/

@TreePerson
Have just attached a link to info about the Daxor measurement of blood volume. I need to do further research but I think I remember there are very few machines in US, and maybe none in UK. I think there may be a cruder way of measuring blood volume though.

I really would just like to skip to saline infusions. I once had one in Cambodia during a stomach upset and felt hugely better very quickly. I would be interested in knowing if anyone has had saline for ME in UK. My ME developed in the months after hip replacement surgery and my BP was very low immediately afterwards so I am wondering if I lost blood during surgery which exacerbated a possible low blood volume.
I am fatigued now or I would do, it but if you Google Leslie Simpson + red blood cells you will find links to his work about types of red blood cell.

Hope that someone can feed back experiences with saline.
 

Murph

:)
Messages
1,799
Just re: blood volume. It's possible to get a saline drip commercially in Australia. There is at least one so-called hangover clinic where you pay a fortune for an orange juice and an IV drip.

http://www.hangover.clinic/

I can find a reference online to something similar in the UK, altho it's pricey

http://metro.co.uk/2015/02/04/city-...e-their-hangovers-with-vitamin-drips-5048735/

What this suggests to me is that IV drips are not controlled by the NHS and it should be possible to find a way around it. I just checked in fact and between ebay and YouTube I think you could give it a red hot go if you were feeling brave.

Meddling with one's veins doesn't sound very fun, but it can't be worse than what all the junkies are doing and if it helps perhaps the risks might be worth it!