Discussion in 'ME/CFS Doctors' started by ivorin, Oct 5, 2017.
Seems he or she is doing a great job
She mentioned somewhere that she has ME diagnoses from 3 specialists. In Unrest she sees Dr. Enlander, Dr. Klimas and Dr. Peterson (argh, my memory, not sure if the last one was someone else). But I have no idea who treats her on a regular basis.
Maybe someone does, could be important information for people who can make it to the US. It's remarkable how much she has managed with full-scale ME.
...I have been wondering the same thing! To quote from When Harry Met Sally: I want what she's having!
She's quite open about what helps her the most, you can find out by checking e.g. her interviews and Facebook page. Maybe she also shared who her doctor is, I'm rarely on Facebook. Can't recall the treatments exactly, just from my foggy memory: antivirals (she said which one but I forgot), medication that is normally used for an(other) autoimmune disease (I believe for Graves' disease but not sure), mold avoidance and pacing. Also as you can see in the film she tried every self-help remedy there is from hookworms to diet.
The Unrest homepage says:
Any idea if the autoimmune medicine is IVIG?
No idea. I'd rather not think so, because it was said it's a medication that is commonly used for one concrete disease (vs IVIG is described for a range of different diseases as far as I understand?).
Yeah, that would probably exclude IVIG. In any case, if you remember in which interview she gave the info please let us know!
Maybe she just looks well? Don't we all? We have no idea what she has to go through before and after her interviews to perform at that level, but I suspect her few minutes on camera will come with a lot of preparation and a heavy price tag.
She might even feel like total crap while she's sitting there looking good and talking well. We've all done it.
That isn't the point of the thread, we're all glad she's better and is such an amazing advocate, but I for one want to know what anyone and everyone is using. You never know what could get you from a bedridden state to being able to function again.
Yes we are all glad she is somewhat better but she wouldn't have been able to do all that she has at her worst times. She has been fortunate to be able to attend docs who are possibly the most expert in the ME area.Im sure we all wish that we could also do so.,and I also want to know of anything anywhere that might help me gain a bit of freedom even in my own home,just to even walk around it a bit more.i feel hugely grateful to her for what she has done, she is having a great impact.i
The autoimmune drug is maybe mestinon : " She also takes Mestinon – a drug that combats muscle weakness. " from here.
Mestinon helps me with being upright (POTS).
Brea is cautious to talk about what has helped her combat ME symptoms because different things will help different people, but two antiviral drugs which came out of AIDS research now help keep her out of bed, she says.
She also takes Mestinon – a drug that combats muscle weakness.
I understand wanting to know but I honestly don't think that you should delve too deep into specific people's medical treatments especially if they prefer not to talk about it.
Not only that but you don't actually know how "healthy" she is. She could be very very ill.
If you really want to know then ask her. If she doesn't respond then move on. You shouldn't really be asking those sorts of things on a public forum.
Just my opinion. Good luck on your recovery though.
I hope you understand what I'm trying to say. I'm not saying that you shouldn't ask. I'm sure she'd reply if you messaged her. I'm just saying that I don't think it's very appropriate to ask about on a public forum. Especially if she's not completely open with it (I'm not sure how open she is about her health treatments btw)
This is just my opinion. Who knows she might respond to this thread herself.
Hi @Ambrosia_angel, JB is very open about her treatment and talks about it on TV, radio and print interviews, in Unrest and has also posted test results (on FB). She said she talks about it for advocacy purposes. The following is not directed at you personally, just my general thoughts on the matter. Sorry this got so long!
I totally agree with @TiredSam, that she's still severely ill and that looks and showing up and pushing through while feeling awful are deceiving. She recently rated herself a 4 out of 10. I think the important point is the progress. She has talked about it in several interviews and you can see in Unrest how she goes from bedridden to walking within days with the right medication. And she ties her improvement to the medication because she collapses if she forgets to take it. So the medication seems to ensure at least a basic level of functioning.
I get that it's strange to talk about another person's treatment. My interest in this is the advocacy angel. I'm not interested to try the stuff she's trying, because we're all so different. JB makes it clear in her interviews that when she talks about her medication, it's not so that people go and try it, but as advocacy. She emphasizes in most interviews that there are probably already existing medications sitting on shelfs that could help (not cure) at least some of us. But we don't know because it has been decades without real clinical trials and most doctors are not interested to try any medication with their ME patients. Also I guess (just my speculation) that she talks about antivirals and other medication in interviews to show that this is an organic disease and we need the appropriate treatment and not CBT/GET. These are all my words, of cause she says everything better and in better English.
If I remember correctly in Unrest the ME specialist is the first doctor to find the active infections. Tests and medication could have saved her from 2 years in bed. It just shows what happens if we're not taken seriously. I have to retire in my 30ies and have not been offered any treatment to try in 15 years (apart from CBT and sport). Apparently it's ok if someone is home- and bedbound in her 30ies and that is still not considered bad enough to at least treat symptoms or write a referral or write a prescription for the stuff the Charite recommended in my diagnosis letter. My sister who is a doctor only shrugs me off with "Well nothing can be done for ME". So this is less about JB for me, but an advocacy matter that we're not treated, are not allowed to try any medicine (after all this would enforce false illness beliefs), that there are no big clinical trials (exception Norway) and we still have not one approved drug for 17 million people worldwide after the WHO recognized ME in 1969. And an example of a public figure like JB who is successfully being treated for her symptoms (not cured) shows what a difference it could make if doctors listened and tried to help.
Got a little long, sorry. I guess I've just very much resentment bottled up about feeling excluded from the medical system. I regularly cry when I'm driven home from doctors' visits because I'm made to feel like I don't deserve any treatment (not even for sleep, pain, POTS) and that no doctor seems to care if I have to retire and spend life in bed with thirtysomething. That's why I'm grateful to Jen that she speaks openly about this topic.
Spot on! That’s exactly the attitude of every “state assigned” doctor and specialist in Norway too, It’s unbelievable, really. Why shouldn’t the multiple affected systems be treated..low immunity, dysbiosis, malabsorption, nutritional deficiences, tryptophan depletion, pain, circulation (OI, POTS, angina like pains), brain fog, memory issues, carb intolerance (diet interventions), metabolism & energy creation.
Every specialist you visit, they look at you, they rapidly seem to conclude that this person does not look sick at all (no wonder, living so annoyingly healthy for years now), and from that point they seem unable to LISTEN, the symptoms you present are not even written down, they look at you with an empty gaze (prob thinking u r a hypochondriac), and from that point you already know that no clinical analysis willl be done, no diagnosis will be given, no treatment suggested. What does people do at this point..any suggestions?
We are forced to become our own doctors. To seek private doctors. To experiment with supplements, diets, treatments.
Established health care has left us alone. They have almost nothing to offer. Incredible, after so many years.
Where is the research, the knowledge aquisition? Very convenient for them to ignore our situation, render it as psychology, post viral fatigue..or laziness. In the mean time we “disappear”, stay at home, in our beds, give up,
How can we make them listen? Make the medical world take this disease seriously?
I am playing with the idea of a mass lawsuit these days, what if the thousands with ME here in Norway took the health authorities to court, for not providing the health serviced that we by law are entitled to recieve.. That we demand research, experimental treatment, knowledgable MDs..much like in the field of cancer, MS, RA..or any other disease that has been ”accepted” as real.
I do not know how well or sick You are, but did You try to tackle the POTS or the sleeping problem alone, by going to a new doctor, without telling him about the rest of your health baggage? In Germany at the moment I would avoid a diagnosis of CFS from a regular doc at almost all costs. It will be the end of any treatment options besides psych counseling. The only exemption might be, being a constant(!) patient at the Charité, not depending on other GPs.
You can also try a Google Site Search
Separate names with a comma.