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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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A LOT of totally incorrect/wrong information and advice given

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
Yikes, that's steep! I assume your insurance won't pay for it? No hope of finding a less expensive ME/CFS doc?

They do not take insurance anyway and I'm on Medicare.

I found a small article about HHV-6 that is a little interesting:

http://jvi.asm.org/content/87/22/12020 - Can someone get the full text of this study, preferably in .pdf, but we can work around that

Another new virus falling to laboratory contamination:

http://jvi.asm.org/content/87/22/11966

Isn't Dr. Lipkin using this in the CFI study?
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
L-lysine is a pretty good treatment for some of the herpes viruses if your doc won't cooperate. You can take 3000 mg for shortish periods I am told.

Sushi

I'm with 100% about l-lysine being a good treatment for (in my case - cold sores). As soon as I feel that tingle I pop 2000mg of L-lysine and if I don't have it on hand I'll go to drug store and ask the pharmacist for some "Cure-a-sore". It is a small bottle of ether and I'll put that on it at least 4 times a day. At bedtime I'll usually cover it well with Abreva. Every cold sore I've had since using this has been completely gone in 4 to 5 days.

The flip side to this is that I have not had one since I became sick 10 years ago.
 

Little Bluestem

All Good Things Must Come to an End
Messages
4,930
I started to realize that CFIDS might likely be what I have this summer after basically ruling everything else out seeing every doctor and doing every test imaginable after getting suddenly ill in January.
That requires having cooperative doctors and the MONEY to pay for it. Many of us are unemployed and uninsured.

I am a scientist and researcher at the National Cancer Institute/NIH and am very used to having to go through hundreds and hundreds of pages of material and concepts to put pieces together.
How many of us do think have that type of background a capability? I think your expectations are quite unrealistic.
 

maddietod

Senior Member
Messages
2,859
I visited with a local friend who also has CFS, who is housebound. I realized quickly that she needed me to talk very softly and a bit slowly, and she asked me to avoid gesturing with my hands. Those aren't my CFS issues - I watch her carefully when I first arrive, to see what she needs.

I did the same thing when I first came here, using chat a lot, to learn about sensitivities and dysfunctions different from mine. I wanted to be able to talk with people without triggering frustration in them. My natural interests and abilities lie in this direction anyway.

The steep learning curve I can't handle at all is the medical one. I just don't absorb medical information, and nothing gets into memory. So I am very grateful for members who can digest studies and translate their relevance to people like me.

I'm struggling with the translation part so far, leokitten, but that's my problem. Maybe some of this is an intellectual rant, and I'm more used to emotional ones. I think we'll all learn a lot from each other.
 
Messages
10,157
leokitten. In response to your first post on this thread, the internet itself is rife with 'A LOT of totally incorrect/wrong information and advice given', not just forums.

I believe all of us are aware that we need to take a lot of information with a grain of salt or research the facts ourselves when it comes to looking after our own health. Really, the information here is just for educational value and if member's feel something is erroneous, they are free to say so and they do.

In the end, the decision is ours regarding what we do with the information and advice given here. :) I belong to a few non-ME/CFS forums related to various subjects and they too all contain information that is incorrect/wrong. I guess it's just the nature of the internet beast.

Kina :)

PS. Welcome to Phoenix Rising.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
I do have brain fog, some cognitive issues and other neurological problems, they are some of the worst symptoms. But as you know with this disease everyone is affected differently.

It fortunately hasn't affected my ability to understand concepts, critically think and put piece of information together, it affects other things like I can zone out sometimes or when I speak now sometimes I jumble words, or I forget where my wallet or keys are and many others but fortunately it hasn't really affected the scientific part of my mind.



I will have to find again all the posts, it wasn't my priority at all to keep track of this I hope you can understand but I will remark from now on when I see it.

For example since I have very high titers for EBV, CMV and HHV-6 I've read all the background research and information on treatments, etc. Many "facts" I've seen people post about Valcyte, Famvir, Valtrex, Cidofovir etc are just wrong, things like their mechanism of action, or one drug is clearly better for this than another because of "fact" X (which is not true), or that this drug is causing them problems because of "fact" Y (which is also not true)

I havent read the rest of this thread yet but most people are basing which antivirals are better off personal experience and also what there own doctors have found, problem is there is no black and white answer, everything we do is experiemental, even as cfs/me diagnosis is 100% and as for herpes testing and knowing if a virus is active or not its all an educated guess. In particular with antivirals, the knowledge from this board is mostly personal experience, theres just no concrete answer or we would just look up that X antiviral fixing X viruses and all is done, we dont know as the research is very limited and even more so limited to how these drugs may work in cfs/me patients as they have different compromised immune systems to other illnesses that use these drugs. I just dont think you can say most of the info is wrong because no one even knows what is right and what is wrong.

Many of us go down this line as we have been failed miserably by the health care system, and some of us are lucky enough to have found knowledgable GP's who do alot of research on the subject.

Im sorry but i cant believe that u can say that most of the info on here is wrong when we simply dont really have answers. And we all say that everyone reacts differently to different treatments, no one here gives a 100% certainty of a treatment. Its one big problem that has very few answers and every patient needs to be treated individually and to be treated properly happens by very few doctors, maybe a hand full. One thing i have learnt is there is no correct answer to this disease, maybe in 50 yrs time we will know??

cheers!!!
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
leokitten said:
As a biologist and biomedical researcher I believe that you actually can fully recover from this disease if you catch it early enough and uncover and treat all possible causes/contributing factors as much as possible at the same time.​
.

I don't know one person who has fully recovered and I am starting to wonder leokitten about you and your comments that everyone else is putting out misinformation. That comment sounds like a load of crap to me.

As ukxmrv said, many of us are way past early intervention and those who may know something is up early can't find anyone to help them.

August59. Even if I could find a doctor to RX Valcyte, who can afford it?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I started to realize that CFIDS might likely be what I have this summer after basically ruling everything else out seeing every doctor and doing every test imaginable after getting suddenly ill in January. So it's been months and let me tell one can do a lot in a few months when you are determined and especially if science is your background. I have spent all of my time reading basically everything I can find since the summer and when I finally found my CFIDS doctor and research working with her.

I am a scientist and researcher at the National Cancer Institute/NIH and am very used to having to go through hundreds and hundreds of pages of material and concepts to put pieces together. If there is one disease that is definitely one of the most complex in the human body it is cancer.

My family and friends thought I was crazy with how much work I have been putting into this but as I told them this disease is horrible I don't want to get worse, the longer I am ill without treatment the lower my chances are, and no one is going to help me out of it except me so I better not waste any time while I still have some energy and will.

Literally most everything else in my life has been put on hold because I know how important it is to fight this now.





Did I ever write anything about what treatment works or what doesn't? No, I simply said get as much data/information as possible and used a multi-faceted treatment approach. Who would disagree with that?





When I say "wrong" i mean clearly wrong: that there is a known particular fact about something and they don't understand it and write like they do saying something that's not right.

I'm not talking about things like "hey I don't think Anti-Yeast works for Candida" or "this methylation protocol is better than this one" where it is clearly not possible to prove someone is wrong. I'm talking about things like basic drug facts or biochemistry facts or disease facts that I know they are not getting right and misrepresenting and then deciding to do something using this misinformation or give advice based on that. This is not good.

Dear Leokitten
Welcome to this forum. You must be very terrified at the moment at the thought that you probably have CIFIDS. I think we are generally agreed that the sooner one identifies the exact nature of the health issue and starts appropriate treatment the better the outcome is likely to be.

I expect as your journey 'down the rabbit hole' unfolds there will in fact be much here that you may find useful. As others have said, some of us have been sick a very long time. And of those people many who would love to go back and be able to 'get right on it' treatment wise. But that ship has sailed.

Although I have not read to the end here, I'll add that treating this illness is a road full of pit holes and traps that puts certainty on some pretty thin ice. I appreciate your urgency in wanting to help by seeing that we only have good advice here on the forum so like Nielk I suggest if you find some glaring misinformation you point it out to us with a brief statement as to its' error. That would be very helpful.

I hope you find some useful info and assistance here. In truth (please understand this the right way all) I'd rather be on my knitting forum and other places than here. I wish that for us all (whatever other forum brings you joy).
best of luck,
Snowdrop
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I totally agree and well written, I think I was misunderstood by complete picture what I meant by it is to have as much information and data as possible with today's tools and technology to use, my apologies. Lab work, other tests, clinical examinations, etc... I don't think any stone should be left unturned, it is always better to have as much information and data as possible, always better than being in the dark.
Also, I meant to add that while true that testing, lab work etc is perhaps the best way to start unravelling what is happening it's not always possible. Some of us either don't have that kind of money or that level of energy or clarity of mind to think through in an organised way how to approach doing something in a logical progression. They may have all three problems. Acceptance isn't easy. We look to the youngest/least ill to help lead us out of this swamp.
SD
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
minkeygirl - There is always a possibility of getting Valcyte through the Patient Assistance Program. Expensive drugs usually have a pretty generous income limits.

I actually thought of that last night, but then forgot to look into it this morning. Thanks for reminding me.

Usually, though they won't help if you have RX benefits which I do. I wonder how poor you have to be to afford $1000/month of medication when you're income is only slightly more than that?

Here's the link

http://www.needymeds.org/drug_list.taf?_function=name&name=Valcyte
 

August59

Daughters High School Graduation
Messages
1,617
Location
Upstate SC, USA
I actually thought of that last night, but then forgot to look into it this morning. Thanks for reminding me.

Usually, though they won't help if you have RX benefits which I do. I wonder how poor you have to be to afford $1000/month of medication when you're income is only slightly more than that?

Here's the link

http://www.needymeds.org/drug_list.taf?_function=name&name=Valcyte

If you go directly to the company's assistance program and plead your situation, it can get you over some humps that they might have on paper. I'm on Medicare with a Part D program, but I still get 2 of my medications through the company's assistance programs. What got me approval on one was even though my disability income was above their limit the $400 a month in medical cost dropped me below their limit and I qualified based on that.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
If you go directly to the company's assistance program and plead your situation, it can get you over some humps that they might have on paper. I'm on Medicare with a Part D program, but I still get 2 of my medications through the company's assistance programs. What got me approval on one was even though my disability income was above their limit the $400 a month in medical cost dropped me below their limit and I qualified based on that.

I"m in a medicare HMO with Part D. First I have to get someone to RX it for me. I'm seeing someone on the 31st so we shall see what she says.

If she wants me on it then I can have her get involved. But I also want to either up my Acyclovir or switch to Famvir or Valtrex. Those should be easier to tolerate so once I get those squared away, on the treating my CMV.

Thanks.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
I"m in a medicare HMO with Part D. First I have to get someone to RX it for me. I'm seeing someone on the 31st so we shall see what she says.

If she wants me on it then I can have her get involved. But I also want to either up my Acyclovir or switch to Famvir or Valtrex. Those should be easier to tolerate so once I get those squared away, on the treating my CMV.

Thanks.
Have you applied for "extra help" from Medicare for drug costs? It is worth applying even if you don't think you'll qualify because there are different levels of assistance available.

For example, my prescription drugs are capped at 2.65/6 for generics/brand names through Medicare even though my Pt D is through Humana.

There is an application on the Medicare website.
 

minkeygirl

But I Look So Good.
Messages
4,678
Location
Left Coast
I'm not even close to qualifying for that. My meds cost about $80/yr right now.

I'll double check when I remember. LOL.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
As a biologist and biomedical researcher I believe that you actually can fully recover from this disease if you catch it early enough and uncover and treat all possible causes/contributing factors as much as possible at the same time.

This may well be true, but unfortunately the answer is not yet out there in the scientific literature. To claim otherwise is totally speculative at this point.

For me personally, there are lots of stories out there, but many don't fit me at all. I don't personally have detectable titres for any of the herpes viruses besides hsv-2, nor do I remember suffering from any of them. This is not really be a surprise, since I became ill shortly after an immunisation (basically continuous symptoms since the immunisation). The problem is that unless you test positive to the common inflammatory markers (CRP, ANA etc), most doctors don't (want to) know about it. Rituximab is personally my hope, since it will drastically change how the disease is perceived in the medical community.
 

Delia

Senior Member
Messages
139
Location
Iowa
taniaaust1

You took the words right out of my mouth!

leokitten I hope you don't get burned by this and stop contributing here. We need all the scientific minds here we can.

I am very sorry you got this thing too. I hope you can understand that, well, your post came off well,

It reminded me of the old get rich in real estate infomercials:

Step one: buy an apartment building.

It assumes we not only do not know these things, but could actually do them, but just aren't. My experiences are very similar to Taniaaust1's

I'm sure others are too. It also assume none if us are at all critical thinkers about what we read or try. :(

Please do continue to contribute! And welcome.



I'd like to say that for most of us, much of the research out there we cant make heads and tails of it, eg I was in a study 7 years ago and once published, it was too complex for me to understand it,I couldnt even get throu reading it. Ive followed ME/CFS research since the early internet days (I got ME/CFS 17 years ago) and I still cant make sense out of half of the studies out there thou I had a very good education (I got sick half way thou a 4 year diploma which included medical subjects). If your brain still can make sense of everything you are reading, you are very lucky. You also being already a researcher would be far more able to understand the research then many of us (expecting the very sick to suddenly become researchers?). Much of the research out there too is so complex even my own doctors cant make sense of it. Expecting very sick ME/CFS patients to be researching themselves is a bit much. I think you have very little idea of just how badly this illness is for many.

If what I said is irrelevent to what you've said, its cause Ive got confused on what has been said due to how my brain has been affected. Just trying to remember what Ive just read in your posts and reply to it, without quoting the parts, is hard for me.

Secondly. MOST of us cant get the tests we'd like and know we need. We arent doctors and hence we cant make the more naive doctors who dont know as much as we do about this illness test us. I have severe POTS and spent 6 yrs trying to get a tilt table test (I still havent had one). Ive seen 30-40 different doctors in the years Ive been sick (many of them specialists). Drs generally do not know what to do about me and refer me on.. I get refered on, refered on, refered on. Ive had to work out so many of my own issues, I had to do my own poor mans testing for POTS and then convince a dr to give me treatment for it (thou drs still havent tested me for it).

Its a case here of a very sick patient having to manage her own medical problems (im sure there are many of us having to do that at this site), both in diagnoses and then telling the drs how it needs to be treated. (the drs dont get time to do research of their own.. Im alone). I even had my severe orthostatic hypertension ignored eg sudden BP spikes of up to 170/138 as the doctors wouldnt listen enough to test me when I was standing up and kept insisting BP is only taken when someone is sitting (now its happening when Im sitting too so finally a dr the other day when to her shock saw my BP was 178, told me she was refering me to a specialist for my BP dysfunction.

Note Ive had this issue Ive been just trying to help myself now with the BP issue for 7 years!! no thanks to drs who wouldnt even take a standing test result expect one who did after I'd bugged him for 4 years to take my BP while I was standing and then freaked at seeing what my BP does in 1min of standing when he FINALLY listened to me and who refered me on to yet another specialist, a specialist who didnt believe the drs letter and didnt know how to test orthostatic issues and just went "that isnt possible" .

Note that was a professor at my cities main hospital who specialised in autonomic issues and then kept saying I didnt have pure autonomic failure (which I already knew!!) as my BP instead would be going up when laying down and not standing. She then (not really expecting an answer) asked me to explain to her how my BP would be going up high on standing (and thou I'd researched all that, I forgot with my bad brain so couldnt explain it). So I was back to square one. untreated severe unusual potentially lifethreatening issues with no doctors listening (unfortuantely the dr who had finally listened to me and seen it for himself and had refered me to that professor, he had a stroke so I couldnt get back to him).

I even took info in to the professor from a well known dr overseas who specialised in orthostatic hypertension in ME patients (Dr David Bell) but the professor said that wasnt right and just kept insisting I couldnt have issues like this going on "its not possible, its not possible for a POTS patient to also have high BP" doh.. hyeradrenalic POTS patients do commonly have high BP. The lack of knowledge coming from a professioner in autonomic dysfunction was astounding. (Its very likely due to your occupation, you could find drs etc paying more attention to what you say then what the average ME/CFS patient experiences with drs).

I also currently have the issue where Im having no treatment management (thou Im on drugs which are supposed to be monitored) as I cant get to any of my specialists as I dont drive and I cant take public transport and I dont have enough help to get places (I collapse with my autonomic dysfunction). Your post came across as making it sound like patients themselves are sick due to not doing the right things.. for many of us we are simply STUCK. Stuck not having doctors who know enough about this illness, stuck with doctors who wont read the info we take in to them about it, stuck cause we cant even get to good doctors. My condition is in decline.. cause day by day Im overdoing it just to do the necessarily things in life as I cant get enough support and arent getting the treatment I need.

I can not fly to another state to see a more knowlegable dr (last time I fly anywhere alone, the airport security was called as they tried to kick me off the plane, I was looking so sick ..struggling just to hold my head up and tremoring and spasming badly.. near a seziure that they tried to refuse to fly me but I refused to get off.. it was a nightmare and I made the plane very late).

Yes Im sure wrong info is giving here at times (one wouldnt expect it to be 100% right at a website like this) but I'd like to point out that the quality of info here in general is generally very good if I compare it to the stupid things Ive heard coming from drs mouths and out of other mouths of the general medical people and of places like the CDC in which exercise is recommended for ME people (their website is better then it was, still not good enough thou and not helpful for those like myself).

A dietian I'd been refered to one time (after this I never went back to her) told me that ME/CFS is caused by us watching too much TV. (I was too sick to even watch TV for a very long time and didnt even have a TV or computer for years). An Occupational Therapist made me much worst.. after her help and advice I was left again not even able to feed myself with a fork.

Anyway.. compared to what Ive experienced elsewhere.. generally the advice here is very good and Ive found better then the advice Ive got from the medical profession who have greatly endangered me and not only not been helpful much but at times have made me worst (I ended up with a prolapsed bowel after being given a drug commonly used in ME/CFS for sleep but this drug had the physiological affect of slowing down bowel peristalisis when I already had IBS-C due to the ME). Is it my fault I didnt know what physiological affects on the body drug does cause I didnt research it? I found out by wikipedia only after it gave me the bowel prolapse and I was then due to that needing enemas daily (so yet another specialist then had to end up in my care). Its isnt ME/CFS patients fault not knowing these things but drs themselves with not doing enough or being careful enough with this patient group. I dont know about your case but I get OVER 90 different symptoms with my ME and can only research so much!!!.

If you see something being said as wrong... you should post and say so. People are happy to get good info. I hope you hang around here if your experience ends up showing you that you are wrong. Sometimes this illness even if one is onto it from the start, isnt so easy to fix. (Many of the things going wrong can be very hard to find * and with such a dysfunction system, what is happening one day may not be happening the next and doctors just do not look for many things).

eg I'll give you just one example of something which someone could have issues with but which would be missed in most (I have many issues which have got missed for the 17 years since I first got ill). eg I have molybdenum deficiency (an essential trace mineral. We are supposed to get that from diet but in my own case I have a gene which affects it.. I I suspected this gene issue so had DNA testing done which showed I was correct and do have the gene issue). I knew I was deficient in the first place throu a hair test (which I know you probably wouldnt believe in)and due to the result of the hair test, I then supplemented it. I then had a 30% improvement with my brain, I hadnt been able to do maths in my head for many years but within 5 days of supplementation of it, I could do maths in my head again.

If you really want to get well you may have to keep an open mind and be open to things you would of previously never considered, as these can lead to knowing other things to look out for which can get backed up by proper medical testing. Most of us are not just researching accepted medical things to improve but going one step further to try to make sure no stone is left unturned one could say. If we are still sick, its certainly not at all due to a lack of trying. Some of us may never get to the bottom of all our problems till science improves more or drs become far better at dealing with ME/CFS. (even our best specialists have lots of ME/CFS people they cant help much).
 

aimossy

Senior Member
Messages
1,106
hi leokitten,
I am only a couple of months on PR. I think it will take me a few more months longer to gage the temperature and get a good sense of this community here it does take a while.
It is very valuable to have people on here who can help us make sense of research that is happening and or critiquing it.
Welcome and I hope you stay

Aim
 

Lou

Senior Member
Messages
582
Location
southeast US
Where to start? This thread is disappointing on many levels. While I'm fine with leokitten's return I don't want to be a beggar indigent with an arm outstretched through steel bars for a morsel of something that may or may not be there. We've been starved a long time anyway, there may be some virtue holding onto a last vestige, a proud group,

I really didn't see much backing off, or at least, some show of understanding for the response to her/his initial posts that a few of us thought condescending, even insulting. However sugarcoated, we seemed a bunch of bumpkins in need of rescue. Btw, even though I let it slide (I've changed my mind) there was no false analogy made in my first post here to your initial one. Simply a matter of scale.

While I recognize leokitten could be a valuable member, I don't see the relevancy of the urgent shotgun blast approach to tests and treatments for a majority of us for reasons already well stated. We've passed that point.

Whatever leokitten decides, I wish that person well. More than that, I hope she/he will apply for transfer to the me/cfs section at NIH, use that newfound passion where it might do the most good.
 

aimossy

Senior Member
Messages
1,106
People don't perfectly communicate their thoughts and intentions. A persons intentions/motivations/purpose/meanings are just as important as the specific words that are said when we communicate.
Did you mean to suggest to me and others that we were being pathetic and begging Lou?
I have liked this thread.