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A LOT of totally incorrect/wrong information and advice given

EMilo

Elizabethmilo.com
Messages
223
Location
Seattle, WA
KDM is certainly a good one if you can get an appt with him. Dr Kogelnik would be another ME/CFS specialist to consider. He's in California, but I can't remember exactly where at the moment. Of course Dr Petersen would be wonderful, but he's practically impossible to get to see. There are other good ones, but they're much farther from you.

The first thing I would do is read up on the top docs to see who seems like a good fit for you. Then I'd check to see which of them you could actually get to see within a reasonable time frame.
Thank you! Yes, I have considered Kogelnik, Bateman and Chia for doctors within about 20 hours drive. Obviously, KDM or Peterson would be great, but I'm not holding out hope.
 

SOC

Senior Member
Messages
7,849
Thank you! Yes, I have considered Kogelnik, Bateman and Chia for doctors within about 20 hours drive. Obviously, KDM or Peterson would be great, but I'm not holding out hope.
Good luck! FWIW, I've actually found the air travel (although difficult in its own way) to see my current, more distant, specialist causes me less problems than the long car trip to my previous (less distant) specialist. It's probably because the in-transit time is much less.

That might not be true if I weren't traveling with my husband who takes care of everything. :hug: I do the whole thing in a wheelchair to avoid overexerting and PEMing myself. I've even been known to put on sunglasses and headphones, close my eyes and act like luggage. :p It keeps the stimulus and stress to a minimum. The whole thing is over in a few hours. Riding in a car for hours and hours and hours was much worse.

ETA: Someone mentioned in a post yesterday that she has a CFS/FMS/Lyme doctor in WA or OR (I'm pretty sure), that she really liked. He's not one of the top docs, but seems reasonable. He encouraged this person to see KDM in Reno, so he seems to know the field. This patient seemed much happier with this local doc than with KDM. ;) That might be a closer doc worth looking into. If I find the thread again, I'll come back here and link it.
 
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EMilo

Elizabethmilo.com
Messages
223
Location
Seattle, WA
@SOC If you see that post again about the WA doc, PLEASE let me know!! and Thanks for the tip about flying. You're right, I'm sure, but I think I might just be too scared to fly right now. I don't know...
 

EMilo

Elizabethmilo.com
Messages
223
Location
Seattle, WA
@SOC, I've searched and searched for that post re a WA or OR doctor and can't find it. I would be so impressed if a doctor here knew who KDM was! If you can think of anything else from that thread (what the title might have been, any key words or phrases), please let me know so I can search a bit better. THank you!!
 

SOC

Senior Member
Messages
7,849
@SOC If you see that post again about the WA doc, PLEASE let me know!! and Thanks for the tip about flying. You're right, I'm sure, but I think I might just be too scared to fly right now. I don't know...
Check out post #22 in this thread. You could PM Eucalypta to see if she's willing to share her doc's name and phone number with you.

Anti-anxiety med can help with fear of flying. You'd only need to take them while you are flying, not all the time. :)
 

EMilo

Elizabethmilo.com
Messages
223
Location
Seattle, WA
Check out post #22 in this thread. You could PM Eucalypta to see if she's willing to share her doc's name and phone number with you.

Anti-anxiety med can help with fear of flying. You'd only need to take them while you are flying, not all the time. :)
Thank you so much @SOC! I have done that. Also happy you showed me that conversation because I was seriously considering seeing KDM in Reno, but I can't afford it by the sounds of it. I really appreciate your help!
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I do think you should always be doing something about this disease, that is for sure.

One thing I can tell you from all the research, information, theories, patient histories, etc. I've read and while not a 100% proven fact it is likely true: the longer you are suffering from this disease and not treating the causes the worse and worse you will get and the chances of recovery get slimmer and slimmer.

I believe people should:

1) Very importantly get as much data as possible about what is going on inside their body. Get every possible lab work and test done to uncover every possible cause/contributing factor to the disease in your body. Getting the complete picture is vital to effective treatment and full recovery.

2) For each discovered cause/contributing factor find out the most effective and scientifically proven treatment and try as to treat them together at the same time when possible unless there is a known reason not to do so. Of course if there are drug interactions or if some combination you are sensitive to or your body just cannot handle so many treatments at once then simply treat together what you can.

Otherwise since this disease is so multifactorial it will literally be a game of whack-a-mole for the rest of your life.

For example if you have measured high antibody titers to HHV-6 you should obviously take Valcyte for at least one year. It's the tried and true treatment for HHV-6 infection and scientifically proven to work. If you also had some other uncovered cause/contributing factors in your lab work you should not wait until the Valcyte treatment is completely over a year later until you start attacking the next problem, and so on.

There is a likely chance that because you didn't treat the other causes the HHV-6 will just come back because your body is still "broken" and susceptible and you've wasted all the gains you've made the entire year taking a toxic drug. Or even worse the Valcyte might take much much longer than a year to bring your viral load (shown by antibody titers) down because of the other causes/contributing factors preventing it from being as effective as it could be.

I am literally treating every known cause/contributing factor (based on lab data) that I can to my disease now at the same time. I had to read every possible interactions and potential issues of all the medications and supplements I'm taking and for safe measure I get a CMP with Diff and CBC every 2 weeks to make sure everything is OK.
I agree very strongly with this. CFS varies with length of disease, it also varies between individuals. As per professor stephen Holgate I agree that is a disease umbrella not a single disease. And as per Leokitten's statement I take that view that taking a good look at your symptoms, deciding what lab work needs to be done and then doing it makes perfect sense.

One CFS sufferer can have completely opposite lab work to another. For some its methylation, others Selenium, other Cystine, yet others low intra-cellular Potassium or Magnesium etc etc.

I suspect it's not without reason that most research into CFS shows roughly 30% have the issue being investigated (e.g. low NADH), 30% have the opposite issue, 30% have no issue. The fact that we vary greatly in our symptoms also hints at this.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Yes, but getting tests and treatment depends on where you live.
I'm in Scotland, in the UK. It's even different in Scotland to England.

If you are in the uk, a "diagnosis" of "CFS", means no more tests, no help beyond GET and CBT if you're in England - or simply left to rot in Scotland.

The NICE guidelines specifically instruct "no more tests" - because it encourages us to think we might be truly ill.

Wheelchairs/disabled parking badges are not recommended - because that would stop us from trying to go out and do things on our own.
I didn't know that about the wheelchairs, parking etc.... That is barbaric..... S.W. and is such a &£*$*$*** grrr!!!!
 

Izola

Senior Member
Messages
495
I didn't know that about the wheelchairs, parking etc.... That is barbaric..... S.W. and is such a &£*$*$*** grrr!!!!


My Doctor here in the USA said the same thing. Guess I need to write her another research memo. I just wrote my P2p letter. I'll not be doing anything for a long while. I'm only a day away from my latest emergence from relapse. Iz