Doctors comments and your thoughts

[Gingergrrl]

Ah ... thank you! I missed the 'jk'!! I'll get my coat ....

No... Please stay and I misread things on here all the time and go back and re-read them or ask for clarification. So I totally understand!

 

[sarah darwins]

No... Please stay and I misread things on here all the time and go back and re-read them or ask for clarification. So I totally understand!

 

[eastcoast12]

Er, well CBT and GET are the cornerstone of what the biopsychosocial bullshitters recommend as treatment — Cognitive Behavioural Therapy and Graded Exercise Therapy. This guy seems a little contradictory.

Yeah I was just playing. If I ever come in here recommending cbt or get, Sarah I give you full permission glitter bomb me. I'll even send you my address. CBT/GET And the BPS has the potential to go down as one of the biggest medical fraud/ cover ups since the last shady shit our govnts have done to its citizens. too many to list. He did say "I bet ya they put you on antidepressants right. I said yeah they suck made me feel like shit. He replied, your not depressed your frustrated u feel like shit and your life has turned upside down. If you wouldn't get bumbed out about that your not human.
feel free to comment,opinions, whatever. Just curios of all of your thoughts

 

[eastcoast12]

I think what the doctor has said so far is quite sensible and he may be a good partner as you search for what the 'underlying problem' is in your case. The crucial next questions are what is he suggesting to do for you now and how much will it cost?

The things he mentions are indeed being researched, just no clear answers yet.

So the next steps are a shitload of bloodwork. 2 weeks ago I had 16 viles drawn. Sure enough the ones that would of I guess show cfs abnormalities never came back. Wasn't enough blood. The main one being NK function. That blokdtest we found a couple more reactivations of EBV, hhv-6, all coxsaki b subtypes and now a new one chronic hep b. Non of the titers are crazy high but some are 10x high then range so it's a bit significant.
The new doc is making do tilt table, vo2max a couple other physical objective tests as well as digging deep in regards to bloodwork. Wants to test pretty much every autoantibody including the weird ones like calcium channel autoantibodies neuro auto antibodies, I mean u name it he looking for it so I feel there's either gonna b an amazing answer and I'll be surfing again or nothing will change and I guess instead of surfing I'll just play tony hawk in ps4.

 

[Gingergrrl]

@eastcoast12 for the calcium channel autoantibody, is he having you do the PAVAL panel from Mayo clinic? If so, would love to hear his ideas on how he would treat this (if you test abnormal like I did).

 

[eastcoast12]

Ah ... thank you! I missed the 'jk'!! I'll get my coat ....

Lol, take off the coat and stay a while. Last week I gave advice to a woman to by drugs at an overseas pharmacy not realizing it was a controlled substance(I think) and was illegal. Talk about face palm. I almost sent someone to jail. I think you get a pass for missing the JK. just don't let it happen again you know not getting jokes is a sign of fear behavior and extremely vexatios That was definitely a joke by the way

 

[eastcoast12]

@eastcoast12 for the calcium channel autoantibody, is he having you do the PAVAL panel from Mayo clinic? If so, would love to hear his ideas on how he would treat this (if you test abnormal like I did).

I'll definitely keep you guys posted for sure. I kinda feel positive about this new guy. He said I have no doubts we'll figure something out . The first diagnosis took less than 15 minutes( although he is reputable in the field ,Dr Cunha. The second we spoke in detail about my med history and labs and he came to the same conclusion. I appreciate the diagnosis but it really blows, but I think everyone on here would rather have a legit (not legit in our eyes but the med establishment .)diagnosis. Like I would take ms in a heart beat, hiv... I'd do a straight up trade. There is very little I would trade. Fuck I'd trade 5 years of normalcy if I died after those glorious 5 years. Sorry for the long disjointed replies. Ben a long few days

 

[Gingergrrl]

I'll definitely keep you guys posted for sure.

Awesome and looking forward to it.

although he is reputable in the field ,Dr Cunha.

Is Dr. Cunha one of the prior docs or the new, promising one?

Fuck I'd trade 5 years of normalcy if I died after those glorious 5 years.

Truly, I would too. I'd take it in a heartbeat. That would see my daughter through high school graduation plus one additional year.

Sorry for the long disjointed replies. Ben a long few days

They are not disjointed to me after being awake the entire night and eight hours at the ER. Your post actually brings me great hope that more doctors are testing for the autoantibodies vs. just giving a CFS diagnosis and saying, "I cannot treat you anymore b/c there is no treatment for CFS" like my former PCP did in 2013. Now, just what to do about the autoantibodies is the next question...

 

[frog_in_the_fog]

Yeah I was just playing. If I ever come in here recommending cbt or get, Sarah I give you full permission glitter bomb me. I'll even send you my address. CBT/GET And the BPS has the potential to go down as one of the biggest medical fraud/ cover ups since the last shady shit our govnts have done to its citizens. too many to list. He did say "I bet ya they put you on antidepressants right.

Therapy and antidepressants are commonly recommended to us. Hardly ever works unless you have relationship problems and/or you really are depressed. Otherwise it is just more precious time and resources wasted.

 

[snowathlete]

I don't think it's trendy as much as doctors are learning more (the good doctors of course) so the subsets are becoming more apparant. If there were not subsets, how could one group be completely immune deficient and another be completely autoimmune (just as an example). I'd easily bet there are at least 100 different illnesses represented on this board alone that present with similar and overlapping symptoms. Am hoping science sorts this all out one day while I, and all of us, are still alive to benefit!

To my mind, doctors have been able to categorize many patients by signs and symptoms into sub groups, but that in no way proves they are different diseases. This same thing could be done in other disease groups too, in MS as Woolie points out you get different manifestations from one person to the next and the two patients can appear very different. Your question about immunity is important to answer, but I think it's perfectly plausible that the same disease could result in these different outcomes. I too hope that science sorts this out quickly enough that we can all benefit from what they discover!

 

[Snow Leopard]

I always thought that this just might be the case that's why it seems there are a bunch of subsets and stuff. but I feel like that would have been researched or something (sense it's cfs I guess it was probably never researched).
Any opinions?

CFS is likely to be multiple subsets. As far as research goes, while some like to spin it in other ways, there has been almost no in-depth/novel research on ME or CFS, compared to other illnesses. This can be proven by looking at the NIH grants handed out over the years (general lack thereof).

It is true that there are much rarer illnesses that we do have a better understanding of - but these are almost all genetic diseases which are much easier to discover (since you can do family based whole genome association studies), or severe illnesses that... well, they kill patients and have strong clues.

 

[eastcoast12]

Therapy and antidepressants are commonly recommended to us. Hardly ever works unless you have relationship problems and/or you really are depressed. Otherwise it is just more precious time and resources wasted.

Tell me about it. My doc, wife, parents were all like just try it(Wellbutrin). I kept saying I'm not depressed in pissed that I feel like shit and can't do all the things I loved to do. Any way I tried it to shut them up. Well I thought Wellbutrin was the happy drug. Far from it. I would be like washing dishes or simethng and out of nowhere I would just start smashing stuff. No reason at all. Scary and weird. Stopped 4 months ago and I feel normal ( as can be ). I wonder if all these psych meds just make people with cfs worse.

 

[eastcoast12]

@eastcoast12 for the calcium channel autoantibody, is he having you do the PAVAL panel from Mayo clinic? If so, would love to hear his ideas on how he would treat this (if you test abnormal like I did).

Not too sure yet exactly what panel they're gonna run. I'll keep ya posted

 

[Groggy Doggy]

Symptoms are a sign something is physically wrong not psychological but went on to say that he believes that people diagnosed with cfs have some deep underlying problems that most Drs won't check for like metabolic autoantibodies or some genetic/mitochondrial problem that hasn't been found.
Any opinions?

Depends. What is the plan this doctor offered? Does he want to be a leader and test you for the "underlying problems" of "metabolic autoantibodies or some genetic/mitochondrial problem" that he suspects is the root of ME? If not, then what services, if any, is he willing to provide? Could you ask him what studies/articles he read that gave him the conclusion that CFS is caused by these issues? My advice is to get as much information as you can, and as much help as he is willing to assist with. Some doctors send lab work to Mayo Clinic, since they work with rare diseases.

 

[Groggy Doggy]

@eastcoast12 for the calcium channel autoantibody, is he having you do the PAVAL panel from Mayo clinic? If so, would love to hear his ideas on how he would treat this (if you test abnormal like I did).

@eastcoast12
Ditto. If you test positive from PAVAL for calcium channel autoantibody, as @Gingergrrl did, then I will get the test done also.

 

[Gingergrrl]

CFS is likely to be multiple subsets.

I think you are calling it "subsets" and I am calling it "sub groups" but in either case, I think we are talking about the same idea or concept. And we are definitely on the same team and I respect all of your posts that I've ever read.

If there is a subset that is autoimmune with MCAS, multiple auto antibodies causing neuromuscular, breathing, and autonomic issues than this is my subset and I have ME/CFS but minus the immune deficiency part and minus anything that I would label as malaise or PEM (as I understand the concepts).

But if what I have is a true subset than I have ME/CFS. I just know that anti virals did not help me at all and I think that IVIG and RTX and things to reduce the auto antibodies are the right course for me (if I can tolerate them!) and my absolute biggest improvement has been treating the MCAS.

I can now eat (with MCAS meds of course) dark chocolate with cranberries and almonds in it with no reaction and last summer, this would have led to potentially fatal anaphylaxis!

So I think the OP's Doctor is really on track but the question is if he runs all these tests, what does he do about it? What are his ideas? I don't expect him to perform a miracle b/c the science is not there yet. Am just curious what his approach would be. Thank you to the OP for the PM's which I hope to read later today, am so behind again!

 

[Hutan]

Wants to test pretty much every autoantibody including the weird ones like calcium channel autoantibodies neuro auto antibodies, I mean u name it he looking for it so I feel there's either gonna b an amazing answer and I'll be surfing again or nothing will change and I guess instead of surfing I'll just play tony hawk in ps4.

I think I want your doctor. Ask him if he would he like to visit/move to New Zealand sometime.

 

[Gingergrrl]

@eastcoast12
Ditto. If you test positive from PAVAL for calcium channel autoantibody, as @Gingergrrl did, then I will get the test done also.

Wow, I would be so curious if you do the panel if you are positive for the VGCC Ab or any of the antibodies! You must keep me posted which I know you will .