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Prescription Drugs Use in ME/CFS.

Discussion in 'General Treatment' started by taniaaust1, Jun 3, 2012.

  1. taniaaust1

    taniaaust1 Senior Member

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    This thread is a mod moved thread out from anothers thread in response to another post which didnt get moved with it... not really a discussion on meds (a mod named it) but rather a discussion in response to anothers comments. So basically just a discussion thread, anyone is welcome to comment on any aspects of ME/CFS or what is said in this thread.

    To Ai-Yai ..
    Clonazepam is to slow down the neuro excitoxity (over active nervous system) most of us with ME have. It is recommended by many ME experts around the world (our neuro systems are more towards the side of seizures etc) and I myself can say it is VERY HELPFUL for that symptom. Without it.. well my anxiety due to over stimulated neuro system was truely terrible.. almost enough to drive a person insane..it was constant and severe.
    This drug apparently works also as like a neuroprotector for ME people. http://www.prohealth.com/library/showarticle.cfm?libid=8021 (here's what one ME expert says about it.. but many other experts also recommend it for us).

    Many of us have tried supplement after supplement.. with no luck. Supplement wise I have only ever found C, B12, molybdenum and selenium to be of help and each of those only helps a little with ONE symptom out out of the over 90 different symptoms I get with the ME (Ive tried sooo many different supplements).

    She obviously needs these meds like many of us do to treat the various aspects of ME.. Im on some of those myself along eg Florenif for POTS but looks like I will be needing to take more drugs for it eg beta blocker as its still not all that good. (these are normal Postural Orthostatic Tachycardia Sydrome POTS treatments). Check out http://www.medhelp.org/tags/health_page/24603/Dysautonomia/Dysautonomia-Treatments?hp_id=171
    I also take prescription pain killer, prescription anti-nausea drug (same kind they give chemo patients), prescription pain killers, 2 prescripton sleep pills etc

    You are very lucky if your illness wasnt severe enough that you didnt need a ton of prescription drugs to help. My life was a hellish nightmare before I got drug treatments.

    I also used to have to take prescription drug (it may of been fluconazole) if I take antibiotics as other wise I'd break out in bad thrush. Many with ME have issues with thrush (candida). The poster said she'd been on antibiotics and those make this kind of issue worst... that I would think would be why the Fluconazole. http://wwcoco.com/cfids/bernesx.html (according to that 30-80% of us get systemic fungal issues .. I currently have what could be fungal right across the top of my foot and ankle, Im currently using prescription clotrimazole cream on it)

    Your comment shows just how unaware you are of how sick some with ME are. Most of us at this site are probably taking as many and some even more.. prescription drugs as this threads poster is. She isnt unusual for ME.
    Im hoping the mods dont remove your post as I think you need to be better educated on this and others will respond.

    One thing I do agree with you with is drug interactions is a worry and commonly does happen. Thing is many of us need drugs for the symptoms we get as nothing else helps. We arent strange taking drugs.. its desperation to get rid of often horrific symptoms and often those drugs do help to make our lives more livable.

    Before passing judgements, educate yourself more on this illness and you will more understand the whys of ME people taking certain drugs.
     
    barbc56 likes this.
  2. Ai-Yai

    Ai-Yai Mad Genius

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    First: this is completely unproved statement. Evidences?
    Second: And so what? Are you cured? Are you much better than before, are you able to live relatively normal life?
    Rhetorical question.....
    Third: Any good doc knows that in any case not symptoms should be treated, but the patient or at least the disease. Symptom treating approach is sign of obvious incompetence.

    Next,
    Again,

    First: I don't know any good CFS\ME expert for today at all. They claim something, usually something pretty groundless, trying to cure people basing on this groundless claims... And what? Do they really cured somebody completely?
    What if we try to figure out how many one get harmful effects or become worse? In fact no any serious resuts can't be seen today from all that ,as you say, CFS\ME experts.

    Second: You all here are huge critics of phsych-related etilogy of CFS\ME (as me as well), but the same time you are using PHSYCH medications.... People, you should decide finaly if your disease is phsyh related or not. o_O
    Or at least try to figure out as much as you can about phsych meds influence on CNS, hormonal and general regulatory processes in the body before you will try claim another one "hypotesis" of their beneficiary.


    Strange, but

    First: "How you can know what she obviously needs". Are you an expert? Are you curred? Do you knwo the full Ivana's anamnesis and all details of clinical case? This is very irresponsible claim!

    Second: i'd spent 6 years on this disease study. And know what?
    For example:
    -CFS\ME people in Eastern Europe have much LESS severe cases than those one in Western Europe and US.
    -CFS\ME people in continental Western Europe have LESS severe cases in avarage than those one in US\Australia.
    -The bigest amount of severe cases - US.
    Why?

    The explanation is pretty simple -amount of used meds, suppl., drug and so on in these regions.
    People in Eastern Europe try to use meds only on very urgent situations. In general their consumption of of various medications is incomparably lower than that one in US for example.
    So it is exist an OBVIOUS statistical dependence of CFS\ME severely from amount of various meds consumption in population.

    My personal cases observations during these 6 years tell the same: VERY often in long-term people are more sick from incorrect\unnecessary\groundless meds than from disease itself!

    About what educated, Tania? You can't imagine the level of my education with this disease and medicine overall. I was very sick and now - symptom free! I got the clear result... What about you?
     
  3. sandgroper

    sandgroper

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    i did manage my illness without meds for about 10 years......but got sicker........so had to take drugs in the end
    and they do help but they of course are not a cure
     
  4. justy

    justy Senior Member

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    AI Yai - i must take issue with your insistence that people in the US are MORE sick than thiose in Eastern Or western europe. This is simply not true. There are very many severe M.E cases in the UK - 25% of all cases are severe or very severe - and we do not get drugs in the uk, even to treat our symptoms.

    I am so glad you have found a way to get better - i wonder if you would be willing to share this treatment etc with us. Perhaps it might help some of us here?
    All the best, Justy
     
    Jenny likes this.
  5. sandgroper

    sandgroper

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    I wonder if there is less pollution in Eastern Europe?
     
  6. taniaaust1

    taniaaust1 Senior Member

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    Not treating a persons symptoms when they need treating is wrong, as they dont know exactly what is causing this disease.. that is all most doctors can do, so hence nothing is wrong with a doctor treating a persons symptoms. It is incompetence if they just turn a person away and do nothing at all. Doctors should do all they can do to help their patients.

    I stated that she obviously needs meds for her symptoms.. as why else would she be taking them and her doctor have her on them?. Im going by what she said herself and what her doctor has her doing.

    Im not about to start bashing others doctors and others thoughts of what they need, if someone tells me they are taking meds for something and their doctor has them on these meds.. as IM NOT AN EXPERT.. Im not about to think they dont need meds for their symptoms. Im going to believe that person, to do otherwise is to completely invalidate another and their experiences.

    There are other reasons why some in some countries may "seem" more sicker then others, the conclusion you've come to isnt the only possible reason.

    I got this illness 14 years ago but didnt get treated by meds uptil recently. I was extremely sick the first years of this illness to the point I should of been IV fed, I was bedbound for quite a long time. So I dont fit your theory as one cant blame meds for making me sicker. It was pushing myself too much which made me crash bad to that point.

    Quite possibly you havent considered the different definitions used in different countries and the different rates people get diagnosed with this illness with in different countries (Australia has its own definition and in my state sometimes the Canadian consesus defination which is closer to ME is used, which has always been encouraged by my states ME/CFS assoc).

    How can one know if there are more sicker patients in one country to another when different definations are being used? That only makes something "appear" to be a certain way rather then one seeing what IS exactly going on. eg In England some with severe ME were unable to get diagnoses due to having too many abnormalities due to the ME (I know someone who that happened too) and hence severe ones sometimes remain undiagnosed (due to the psych biased over there).

    Also with some countries it may be easier then other countries to get diagnosed and hence ones with CFS not as sick may be diagnosed with having it while those may be being missed in other countries.

    Getting a ME/CFS diagnoses in Australia... I personally think is harder then getting one in England (we've never had any CFS clinics here). There is not one doctor in my whole town who will diagnose ME/CFS. My friend in my town, it took 22 years for her to get a CFS diagnoses (she had to start trying doctors outside of the town to get it).

    Quite possibly its only the more serious cases getting diagnosed here eg when illness is very severely affecting, so have no choice but to go to countless numbers of doctors to try to get someone to diagnose and help in regards to medications and getting disability etc. (my cousin with ME in another aussie state to me remains ME/CFS undiagnosed.. incredibly she's even on disablity and has been for years now, with her illness undiagnosed still).

    This is all evidence of how minor cases and even severe cases are going undiagnosed in Australia... its logical that more minor cases would be undiagnosed then the severe ones.

    Even differences in disability pensions etc in different countries, may give an altered view if going by what we see online.
    eg in some countries one may not be able to get onto a disabiilty pension for ME/CFS, this may leave the too sick to work ones in some places, with inability to have computers and be seen online. Ive no idea if that could be a factor for Europe or not. Poverty of the most sick could make that group be less seen.

    anyway, Im just saying that there is a ton of factors involved if trying to compare if one countries population is more disabled by ME/CFS then another countries population. I personally cant see a way to currently do true comparions of this due to countries differences.

    Just cause you've recovered IN YOUR OWN CASE, it dont make you more educated then anyone else on ME or CFS. It does not mean you have the knowledge to fix everyone else
     
    August59 likes this.
  7. Ai-Yai

    Ai-Yai Mad Genius

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    Tania, learn Ivana's new topic: http://forums.phoenixrising.me/index.php?threads/cytokine-storms-from-meds-are-killing-me.17806/

    Then remember my answer to Ivana(for which i was insulted by you, Ivana and edited by moderators) at her previous topic here: http://forums.phoenixrising.me/index.php?threads/help-symptoms-are-driving-me-crazy.17754/
    THIS IS JUST WHOLE COMPLETE LOL SITUATION! =)

    Sorry Tania, but i will not debate with you or with anyone unofficial here.
    (Just did some conclustions from my previous mistakes.)

    Take care!
     
  8. taniaaust1

    taniaaust1 Senior Member

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    That's a good ME/CFS debate.. Are people sicker in some countries with this illness then in other countries? I'd love to hear other views and the reasons if people think there is differences of whys?
     
  9. taniaaust1

    taniaaust1 Senior Member

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    I thought you wanted to debate this seeing we both were muddiing her thread and you kept responding too there ...hence why I requested our posts taken out as convo went off topic in her thread and hence why this had to be taken elsewhere as it was the respectful thing to do.

    Yeah I did read her new post. I dont understand why you've brought up her new post?

    I never had any issues no problems with her stopping her meds (If you look in her original thread before her new one, I acutally suggested that maybe she should do that, IF her doctor was fine about it ..till she worked out what meds she was badly reacting too)., That's what I myself would of done if I was getting bad side effects too..

    Im completely confused what point you are trying to make here? Are you trying to point out again that all meds are bad? Each of us reacts differently to different meds thou. You cant say we all shouldnt be taking meds just cause someone reacts to something. Meds are helping many of us live a better life then what we otherwise have.

    Feel free not to respond if you dont wish to do so.
     
  10. Valentijn

    Valentijn Activity Level: 3

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    No one has ever been cured of ME/CFS. Some have long term remissions, and some recover, but to be cured implies that there is a cure. There is none thus far. In addition, a cure is not the only useful treatment for a disease. Yes, a cure is the most useful treatment when a cure actually exists, but when one does not, treating symptoms is an excellent alternative.

    I take a lot of supplements, some as part of my basic regimen and others on a trial basis. If I stop taking the basics, things get very bad, very quickly. Things were getting very bad, very quickly, long before I started any supplements.

    And any intelligent person knows that you don't completely avoid all treatment simply because there is no cure yet.


    Fascinating. Not only should would avoid all treatment absent a cure, but all of the experts looking for a cure should stop, simply because they might be wrong?


    "Psych" meds act in physical ways. In the case of ME/CFS, hormones and neurotransmitters are frequently off-kilter. There are tests that can show this, and it makes sense to try drugs or supplements to help support those substances returning to normal levels. Despite all the idiotic comments made by certain shrinks, we do not stigmatize psychiatric conditions and we are not adverse to trying traditionally psychiatric medication when indicated.


    We're trusting the judgement of her and her doctor. We might share our personal experiences of medications, but the choice is ultimately hers to make. You should try to respect that.



    We have a saying back in the US: "Put your money where you mouth is." Support your assertions with something objective, if you can. If you can't, do not expect anyone to take you seriously. You are not a researcher, and even if you were you should accustomed to proving your statements.

    Again, put your money where you mouth is. People claiming to know "the cure" are a dime a dozen, and none ever withstand any scrutiny. At best, some got lucky and had a spontaneous improvement - and even most of those will end up relapsing again. And many others probably never had ME/CFS to start with. If they did have the cure, they'd be sharing it with the medical community, rather than making vague proclamations on forums about how brilliant they think they are.
     
    xchocoholic, barbc56 and justy like this.
  11. xks201

    xks201 Senior Member

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    Klonopin is really a double edged sword. I wouldn't even go near it unless you have low gaba levels as verified by some test. As for prescription drugs - we all have our "cocktails". I think we should all differentiate between hormone treatment like florinef and other prescription drugs. Because Florinef is basically treating an aldosterone deficiency. If you are taking florinef and literally do not lead it things can happen like hypernatremia and dangerously high blood pressure.

    I am reluctant to even begin to list every RX drug I have tried. I will say though that I have an extremely potent drug cocktail that could probably make a 90 year old lady bench press her body weight. I think many cases of CFS have to do with a deficiency in beta adrenergic receptor number or sensitivity. http://www.ncbi.nlm.nih.gov/pubmed/19647494 combined with chronic dopamine resistance (which is probably genetic).

    http://www.ncbi.nlm.nih.gov/pubmed/16478526
    Here we have a paper stating that the relationship between beta adrenergic receptors and dopamine receptors is very closely related.
     
  12. taniaaust1

    taniaaust1 Senior Member

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    Im on Florinef and it has actually DOUBLED what Im capable of physically doing, thou I dont have a aldosterone deficiency, I take it for POTS.

    Ive no idea if I have low gaba levels or not but was taking Klonopin for neurotoxicity and it certainly did help me with that.

    I just wanted to point out that some of us are taking those things not for deficiencies but rather due to other things and they still can be helpful in these situations.
     
  13. barbc56

    barbc56 Senior Member

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    This is my thinking. If meds. make me closer to "normal", whatever that is o_O , at least my body isn't stressed from having symptoms. Meds. have helped me greatly, but I have a doctor who is very knowledgeable about drug interactions. I am actually on fewer meds. than I was 10 years ago.

    For example, pain can damage your brain. Taking pain medications can be neuroprotective. Anxiety can become a self feeding loop and anxiety increases but some meds. for anxiety stop this cycle.

    That being said, I think we as a nation in the US, don't know about other places, think that if we pop a pill, it will cure our woes. This includes supplements as well as conventional meds.

    BarbC.:>)
     
  14. barbc56

    barbc56 Senior Member

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    Possibly not reported as much? Interesting.

    BarbC.:>)
     
  15. Ivana

    Ivana Senior Member

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    Hi guys

    Not sure how many are from Aus (or if this might be available overseas) but there is a site here called genesfx.com.au which you can get your GP to send you for a blood test checking for cytochrome p450 which will tell you what meds your body and kidney is accepting well, which make it worse and which could cause to other health problems. I might go get it done when I have some energy.

    Barb, I think the air is less polluted in eastern europe and its easier to breathe, as I was mostly housebound and very sick here in Aus and then went to Europe to see KDM, and then went to Serbia (where I'm originally from) and I was able to breathe sooo well, that I had much, much more energy. Didn't need my puffer or oxygenator or anything, my lungs and breathing felt great. Got back to Aus (we have lots of pollution here) and i feel like i'm choking most of the time.

    Best wishes
    Ivana
     
    taniaaust1 likes this.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Ivana,

    I've had a similar test in the States from Genova, but it only reported on a limited range of drugs. It was very helpful for evaluating your detox system though and most (all?) drugs are processed through the detox system.

    Hope you get it and that it gives you some good information.

    Sushi
     
  17. Ai-Yai

    Ai-Yai Mad Genius

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    1.Who told you than cure doesn’t exist?
    Those ones who have spent more than 20 years and probably hundreds of millions for their work\employment, career, wealthiness securing and “kickback” science?

    2. FIRST MEDICAL RULE SAY ONLY ONE THING: “Do not make HARM first of all!”.
    To be able to treat symptoms you should:
    a) know and understand the full disease pathogenesis, bc if you don’t know you will simply don’t understand the nature of that or another symptom… So how can you efficiently and ,what is the most important, safely treat it?
    b)have evidences that exact symptom have exactly such etiology\nature as you think.
    c)have evidences that you therapy approach is really useful and beneficial for exact symptom on the assumption of that point “a” and “b” are satisfied.

    Human body is very sophisticated biological system and what patient feels not always truly mirroring the real situation or progress direction.
    Had i ever told anything about you or your supplements? Strange… – I didn’t ever comment your situation. … I even don’t know it.
    I have annotated the exact case – i.e. EXACT situation with EXACT patient! Detailed treatments discussion without exact case and patient consideration in such difficult situation as CFS\ME is completely useless, irresponsible and even silly.
    WHEN and WHERE I said that one should avoid all treatment???? Point me to that please!?

    Any treatment should be well grounded, bc no completely innocuous medication exist. About grounding –read above. About Ivana’s case: such amount of various heavy duty meds just can cause a lot of symptoms and side effects by their own, confusing even more not simple situation –i.e. she might be unable to figure out what troubles are from disease and what are from meds.

    But when she mentioned that she was taken fluconazole for several months(!) for bowel candidasis(while she is HIV-negative, have no organ transplantology or heavy duty corticosteroid history) all become pretty clear.

    That means that she was persuaded so much with pseudo-medical sci-fi rubbish that all tries to explain her that it is wrong and groundless tactics are almost hopeless.
    And after that I wished her good luck and washed my hands of the case.
    That is really becoming funny…. AGAIN: I DIDN’T EVER SAY THAT ONE SHOULD AVOID ALL TREATMENT! Where did I say that??? Show me that!

    I have said only that any treatment should be well grounded and “no harm first of all” principle should be used.

    And again, I’m repeating: All these experts which I saw are mainly just drawing Your and government money. More than 20 years already past… hunders of millions was been spend!
    Where is ANY SIGNIFANT and at least paritaly usefull result from all of them?
    There are no such result for today exist!

    Or maybe for these 20+ years they have advanced some fundamentally different new theory? – No! In fact ,figuratively talking, they are selling you the same “panties” for already more than 20 years… they just washing it before each sale (bc of what it can change “its color to some degree” as time goes).
    Then for what all these money was spend… why… and by whom during more than 20 years?

    Also why big part of official medical establishment refusing the CFS\ME existence? I think that you never thought that this refusing might be bc of official rubbish theories and positioning of created by those CFS\ME experts for all these years…
    Do you know WHY hormones and “neurotransmitters” are off-kilter?
    - NO! Then how you can know the right way to fix them?

    Are their levels affected to life-threating degree?
    - NO! So do you really need these type of meds? Are you sure that they are fixing exactly what you need to fix? – I don’t think so…. Will you die without those psych meds?

    How many patient do tests to determine the levels of hormones and ,as you say, “neurotransmitters” before they try any psych meds?
    - Almost noone! In fact less than 1% probably or lower. So does the grounding for them really exist?

    Do most of psych meds might be considered as completely safe?
    - NO! A lot of effects of such meds might be considered as CFS\ME symptoms by many patients in fact.

    Do you know the history of psych meds as a class? 90% of them was created in experimental way and till these days for many psych meds the full mechanism of action is STILL UNKNOWN!

    At in the end read the bold part of my words in quote once again.
    With trusting and beliefs you should better appeal to church. Medicine requires logic, analytics and evidences. IT IS COMPLETELY IRRESPONSIBLY TO ADVICE ANY KIND OF MEDS WITHOUT DETAIL CASE STUDY AND ANALISYS …and..esp. grounding on own beliefs in somebody who indirectly related to the disease case!!!

    What disrespectful did I say at Ivana’s topic? She asked about advices and opinions – I gave her mine as well as others did. About what respect are you talking?

    If somebody asking if 2x2=7, then I should answer: “Yes it is! Well done and go on!” because of respect??? Are you kidding? THIS IS RIDICULOUS!
    :eek: Ha! You know so much about me… even I don’t know such a lot… ;)

    Why I should support anything in face of auditory which insult me from all around just for simple advice\opinion in exact case … btw the same one as other ones have? It rather seems that such auditory like the current situation and how things goes, it looks that they don’t need anything new bc all is already very very good.
    Some wisdom ones say that some people better understand digits than words.
    Ok, I will –be sure! :zippit:

    1. I NEVER ADVICED IVANA’S OR SOMEBODY ELSE HERE ANY KIND OF TREATMENT! Can you prove opposite? I was criticizing only the wrong and potentially harmfull approaches according to MY OPINION.

    2.I just answered Ivana’s question with my own opinion and ,as you say, personal experience for what then was attacked by Tania and after her by moderators.

    3.Yes, I told that I’m now symptom free(note: I didn’t say cured .. yet at least) and that was used in debate with Tania(but not with Ivana’s) as argument which supports my positive ,as you say, personal experience.
    ----------------------
    Look, Valentijn, I answered you just bc of respect to your moderator badge and you personally for wearing this badge with all its charges.

    As i said before, any discussions about treatment medications separately from the exact case, exact situation and exact patient are useless, irresponsible and potentially dangerous for those ones who haven’t any kind of medical background.

    I don’t want and will not debate anymore here at all, independently on your answer or its absence.
    Also I will try to not comment any cases on this forum too.

    Lets better you will do your job and i will do my. Time will put all on its places.

    Regards,
     
  18. SOC

    SOC Moderator and Senior Member

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    Uh, who's the "we" referred to here and what is the job they are going to do?
     
  19. taniaaust1

    taniaaust1 Senior Member

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    I personally dislike psych drugs too but that isnt the point

    Those who use psych drugs off label for other things.. it isnt a matter of if they will DIE without them :eek: .. but more of a matter of using them to ease symptoms whether it is pain or sleep. I dont understand why you are so against patients using meds which relieve them of symptoms.

    Yes curing something is far better.. but for many of us we have been seeking "a cure" for a very long time and in the meantime if there is something which helps lessen our symptoms, that is good.
     
    BEG, xchocoholic and heapsreal like this.
  20. Nielk

    Nielk

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    Just a word of "warning" or "caution" for people taking Benzo meds like Klonopin.

    Some people have no problem taking them long term. They are able to manage for years on the same dosage.
    There are others who become dependant on it with long term usage. I don't know the statistics as to how many people have this problem but from my personal knowledge, this number is not low for specifically KLONOPIN.

    For those who have this "tolerant" problem, ie. they have a need to keep increasing the dosage as time goes on - it is next to impossible to get off of it. One becomes "addicted" to it.

    I know that this happened to me personally. No doctor was able to help me taper off the Klonopin.
    I did not have the luxury to do a real slow and safe taper that would have taken me 7 years because I started having really bad adverse effects from it.

    It really became a life or death situation for me.

    I finally entered an inpatient detox/rehab clinic and was there for over a month.

    I am totally off of the Klonopin as well as Ambien which I was taking for sleep.

    This "intensive detox" that I went through was the hardest, most torturous time I ever experience but, it was done under medcal care and I got through it.

    I feel so much better today. I feel like I got a second chance in life and I am very grateful for that.

    I just wanted to caution others about taking this drug. There are other medicines that can be substituted for it
    that are not addicitive and dangerous.
     

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