How do i trust?

[MeSci]

I think I get where you are coming from now, @trickthefox.

Maybe you will never regain that state of absolute trust, at least in health 'experts'. I don't see that as a bad thing. I agree with @duncan about getting copies of your own results and interpreting them yourself, or with help on here. I have found along the way that doctors often don't have a clue what test results mean!

I doubt somehow whether the NHS has anywhere you can check your own results, but there are probably places online. There is a lot of discussion about Lyme here, with some people thinking that it's a likely cause for many of us, and others not.

As for what philosophy is best when you have a long-term problem with repeated disappointments, the one I have found helps me cope best is, I think, the simple:

Hope for the best;
Prepare for the worst;
and accept what happens.

That doesn't mean to accept anything in the long term - just in the moment of disappointment. When something doesn't work, or makes you worse, at least you have learned that, and can now move on. Maybe you can share what you learned with others here, which could help them decide whether to try it or not.

Re the anxiety you seem to experience, this is very common in ME, and can often be fixed through diet or supplements. I had had lifelong anxiety, and grown to accept it as a personality trait, so was amazed and delighted when in my sixties I found that a diet and supplement regime I was trying for ME reduced the anxiety dramatically. You may find that you can do the same with some of the interventions mentioned in this thread.

Of course, the very fact of having a chronic illness, and the effects it has on your life (not least financially) is enough to cause anxiety in anyone.

BTW, you do seem to be doing/have done a lot of the 'right' things already!

 

[Bob]

Hi @trickthefox, I think many of us can relate to everything that you've said. Unfortunately, immense frustration, disappointment, and justified anxiety about the progression of symptoms etc., are all very familiar experiences for us. I find that we don't all have exactly the same range of symptoms, but we all have remarkably similar personal difficulties and challenges to overcome. And we all seem to have remarkably similar personal journeys with this illness. So you're in good company to ask these questions.

I think I might be slightly unusual, but i've found that almost every recommended supplement that I've ever taken has made me worse - one of them (probiotics) disastrously worse.

I've got similar gut problems as you at the moment - I can only eat five food items because I've got an acute IBS issue which flares up my ME. I haven't found any answers to this, except to stick to eating what I can best tolerate. Keep in mind that gut issues are likely to change spontaneously over time - they can improve and deteriorate. So if you are gentle with your gut, you will quite likely see a natural/spontaneous improvement over a period of days, weeks or months. (That's what I'm hoping for myself!)

Your ME could possibly be related to the MMR vaccine, but it's not necessarily because the vaccine was dangerous for any ordinary people but because people who are susceptible to ME are vulnerable to immune insults. I had been receiving a series of Hep B booster vaccines shortly before I became ill. Vaccines are a common trigger for ME, and some people get ill after other immune insults such as a short illness or a trip abroad. But I find there's no point looking backward, to the trigger, unless it can give us a specific answer, such as in the case of Lyme disease.

It seems that we all react differently to different supplements and medicines etc. There's definitely not a one-size-fits-all therapy, treatment, drug or supplement. Many of us, me included, have found nothing that transforms our health for the better. A few of us (and I think it's a minority) have been lucky and have experienced some significant improvements after extensive searches for sympathetic doctors willing to give experimental treatments. But there's not much access to this in the UK, and it's very much a case of hit and miss, and very few of us have found significant answers. We can find things that help to shift symptoms in the right direction, but the reason we're on this forum is because we're all ill and we haven't found any satisfactory answers.

But that doesn't have to be as depressing as it sounds. It is possible for many of us to find an equilibrium that we can live with, or to experience a steady improvement in symptoms that returns a decent quality of life. Life is limited, but it's not meaningless. I've found a lot of meaning and satisfaction in my life since becoming ill. Except when my symptoms are at their worst or going backwards - Any time I have set back, I really struggle to cope emotionally. Also, many patients (probably a majority) stabilise over time, and gradually improve, albeit with many disappointing and deeply upsetting setbacks along the way.

For your own situation, what you've got going in your favour (if your photo is representative) is your age. Young people have a better chance of improving, as long as you rest and pace. There's a strong likelihood that you will naturally improve over time, at least to the point where you can enjoy life and easily take part in moderate everyday activities.

Re the lightning process, your version of it sounds OK, but I would usually tell people not to touch it with a barge poll, because it teaches people to ignore their symptoms which is dangerous for ME patients. We've got to be aware of our symptoms so we don't push through our safe limits. So, make sure it's not causing you problems.

For myself, the turning point was when I discovered pacing. Learning about pacing was quite a transformative learning curve, but the benefits were very slow to come on stream. It took a long time for me to see the difference. Pacing taught me that there was a direct association between my activities and the course of my illness. Then I started to rest intensively, along with implementing a strict pacing regime, and I gradually started to see my illness stabilise for the first time. This led to a gradual but definite improvement. Until a major relapse a year ago, my health had improved to the best place I'd been since getting ill, and I was in quite a good place. So it's very likely that things will improve for you over time, but it can be a frustratingly slow process.

Also, I've found that a quarter of a 0.5mg clonazepam tablet daily (emphasis: a quarter of a tablet daily) is beneficial and helps to stabilise my symptoms. (And at such a low dose, its doesn't create dependency.) I've found this to be the only drug or supplement that is helpful. It only has a subtle effect, but I've found it very useful to make my reaction to exertion (PEM/PENE) less volatile. I use it when my symptoms are at their worst or deteriorating. When I'm more stable, or relatively in a good place, I come off it. (It works for me but we're all different.)

It sounds like you're managing your illness and life exceptionally well, but that you have understandably hit a period of frustration. I haven't really got any advice except perhaps to suggest having a break from supplements and medicines for a while to allow your body a period of equilibrium? And to always pace and rest (my motto is: rest rest rest pace pace pace). And to share and vent (as you have above) when things get difficult or you hit a brick wall. You're always going to have moments when you lose your faith, or lose your sense of direction etc, but these periods will pass, and you will get back on track.

One of the biggest difficulties of this illness is making major life adjustments, dealing with frustration, and setbacks, and dealing with the emotional fallout of watching your life move into the slow lane while the world pases you by. It sounds like you are well positioned to make those adjustments, and are dealing with it well. Remember that it is very likely you will improve but it will be a slow process.

Well, I don't know if any of this has been any help. It's just my personal ponderings. Take from it anything you find helpful and ignore the rest. It sounds like you are dealing with your situation very well. And I know it's a very difficult situation to deal with. Many best wishes to you, for finding a way forward. Please keep in touch.

 

[alex3619]

Trust is not something that we can really "trust" with ME, CFS, MCS and so on. Too much is ill informed, or dangerous. What is more useful to me is HOPE.

Research is advancing like never before. We have not one but several potentially very good treatments in various stages of the research process. Not one but several investigative processes might soon give us biomarkers. Diagnostic accuracy might already be up as high as 95% which is very good, but it needs more research.

The second thing is to connect. There are lots of people here who understand, and care. We might not always have answers, but we can listen, and encourage, and help give you some perspective.

Lots of the claims made by lots of treatment providers lack sound science. Sadly, that is the reality. Yet we are so desperate for treatment or anything that we try things hoping they will work. Sometimes they do. Some treatments also work very well for specific subgroups of patients. There is no way to be sure if a treatment will help without trying it. Most of us here have tried lots and lots of things, spending all our money on them.

However one thing is very sure. There is currently no proven cure. There is however a potential cure in late stage research, and more being tested.

Don't trust that the cure will arrive soon, but definitely hope it will.

I hope you find the perspective you need on these forums. Welcome.

 

[Tammy]

I don't know your history..........have you had any viral testing done?

 

[MeSci]

Just a couple of places where you can look things up:

Supplement poll for people with ME

Site where you can check out scientific evidence for various supplements

IMO (and I have done a lot of study, research and some paid work looking at this issue), it is not worth considering 'evidence' from studies on non-human animals, due to the extremely-poor predictive value they have for results in humans.

 

[trickthefox]

Thank you guys, your advice means a lot. I have had viral testing done, the only thing that shows is a past Epstein barr infection, (I have checked for a huge number of things including XMRV, mumps,measells,rubella,syphellis,hiv,thyroid all okay) and I had a past Amoeba infection (E hystolitica) which i cured in 2013 with lots of antibiotics (also cured blasto hominis) And ever since then my food intollerences have been much worse

I have never been tested for lyme disease but always dismissed it because i had never experienced the aches and pains, until very recently - i get tingling in my feet, and the bones of my legs feel much to big for my body, although this is more likely to do with nutrient deficiencies (magnesium/calcium) from being on a restricted diet for so long

If someone can make sense of my symptoms and see if it fits a particular sub-group of CFS that would be helpful

My complete list of symptoms

Brain fog - substatially worse after eating, particularly after eating carbs/sugars
Fatigue
Racing/ADHD type thoughts, inability to relax
Blurry vision/floaters/visual snow-static
Constant twitching calf muscles
Dry mouth/coated tounge
Huge list of food intolerences
Constant mucus/undigested stools
Constant bowel movements/noises
Pressure around head like im wearing a headband
swimmers ear on my left side
Visual perseption distortion
For the first 3 years depersonalisation/derealisation which has faded
Anxiety/depression
Yellow palms/feet
Deep breathing intollerence - get very dizzy doing breathing exersises
Intermittent symptoms that in the past year have been pretty much constant - but if I starve myself my brainfog/anxiety symptoms seem to get much better at about 3 days in suggesting gut issues
Constant Low lymphocites on tests

Lucky as i mentioned I havn't experienced a large degree of pain during this illness, initially this made me rule out lymes disease, and for years my focus has been gut repair and maintanance, but now im wandering wheather the gut is just a part of a bigger picture???

Other notable things are:

Massive intolerence of sulfur based supplements/histamenes
intollerence of glutamine

 

[trickthefox]

One other notable thing that makes me convinced that I have a bacterial issue - when i took the antibiotics for the E-hystolitica I felt so tired and terrible, aching muscles etc. then the following week experienced a week of the most mental clarity i have experienced in the history of my illness - this was after 10 days of doxycycline and paramomycin - then all symptoms came back 10 times worse - A simmilar thing happened following a short corse of tinidazole - i felt a level of calm and health I have not felt in years then again same picture - a week or so of feeling good, then my symptoms came back but even worse than pre-antibiotics. Would this fit a lyme picture? or is there no way that you would feel good after such a short corse of antibiotics and does it more likely point to intestinal bacterial overgrowth?

The things i have tried which gave me short relief or decrease from symptoms are:

GAPS diet
Mutaflor Probiotic
Low Carb
Fasting
Fecal Transplant
Xylitol (but now makes me worse)
Yoga (but cant do it now)
light exersise (cant do it now)
infra red sauna (cant do it now)
High dose echinecea and wheatgrass powder helped a few years ago but now has no effect
specific antibiotics help for a short period of time but i have found them too risky to take too often, and my gut is in a mess now so am reluctant to take more


Things that i tried which didnt help include
accupuncture
high carb
prebiotics
pacing
CBT
Graded exersise therapy
Hypnotherapy
Nutritional supplements
trying to heal leaky gut
herbal remedies
homeopathy

loads more which ill add later

 

[Bob]

Lucky as i mentioned I havn't experienced a large degree of pain during this illness, initially this made me rule out lymes disease, and for years my focus has been gut repair and maintanance, but now im wandering wheather the gut is just a part of a bigger picture???

My guess (and it's only a guess), is that the gut symptoms are part of a bigger picture - a heck of a lot of us get IBS or similar, which can flare up our symptoms in general.

Profs Lipkin and Mady Hornig are looking into the gut microbiome of ME/CFS patients. I'm hoping that this might lead them to some discoveries re the interaction of our immune system with the gut. I think gut issues are a symptom of ME/CFS, and that ME/CFS may be triggered by an interaction between gut and immune system in some patients.

Intermittent symptoms that in the past year have been pretty much constant - but if I starve myself my brainfog/anxiety symptoms seem to get much better at about 3 days in suggesting gut issues

I've heard this sort of thing from other patients too. At first glance, it does seem to suggest something like celiac is going on, but it could equally simply be the immune system playing havoc with the gut because of the ME.

One other notable thing that makes me convinced that I have a bacterial issue - when i took the antibiotics for the E-hystolitica I felt so tired and terrible, aching muscles etc. then the following week experienced a week of the most mental clarity i have experienced in the history of my illness - this was after 10 days of doxycycline and paramomycin - then all symptoms came back 10 times worse - A simmilar thing happened following a short corse of tinidazole - i felt a level of calm and health I have not felt in years then again same picture - a week or so of feeling good, then my symptoms came back but even worse than pre-antibiotics. Would this fit a lyme picture? or is there no way that you would feel good after such a short corse of antibiotics and does it more likely point to intestinal bacterial overgrowth?

I don't know much about Lyme disease, so I can't give you answers about that. But this could potentially (I'm guessing and speculating) be a case of your immune system being intolerant and insensitive to gut flora (either all if it or certain strains). So when your normal gut flora starts to return after a course of antibiotics, your symptoms flare up.

I think some of us have over-active/over-sensitive immune systems and some of us seem to have suppressed immune systems, but what we might all have in common is a disordered/dysfunctional immune system.

Your racing thoughts might potentially be related to a stimulated HPA axis (hypothalamus-pituitary-adrenal axis), which many of us think we may experience. This could potentially be related to an over-active immune system that's potentially causing your gut problems. (But, again, I'm guessing, and it could potentially be some other issue.)

So your symptoms may simply point to 'ME/CFS'. There are some less-common symptoms and complications in your list, but nothing I haven't seen mentioned before in these forums a number of times. Except perhaps yellow palms and feet - I don't think I've seen that mentioned before.

Sorry I have no answers. But i think it's good to explore these issues whether we have simple answers or not. Maybe someone else will have better answers than I do. BTW, if you have a dysfunctional immune system, it might potentially be an autoimmune disorder - so perhaps wise to keep an eye on rituximab developments over the next couple of years?

 

[duncan]

Lyme doesn't always come with a lot of pain.

Lyme could also explain away many of those symptoms.

Disseminated Lyme has a very "individual" quality to it. People who have late stage Lyme share many symptoms, but one or two may be more or less peculiar to each person, and certainly the degree of symptoms varies from person to person.

That being said, @trickthefox, you appear to have done your homework. You seem to be acquainted with many of the limitations of Lyme testing, including the purported problems with false positives.

You might want to consider testing for Lyme to at least establish if you've been exposed to the most common strain. If you come back positive, then you have some choices. If you come back negative, all the better.

This doesn't address the cost of Lyme testing. It can be expensive. So, you may wish to weigh the odds.

One additional caveat: The problem with testing for one pathogen to explain our symptoms, is that we frequently are inclined to test for another, and then another...This is only more so with TBD's; once you open that box, duck.

You seem to really have a handle on many aspects. You appear to be willing to research, and that is a big plus.

 

[MeSci]

One other notable thing that makes me convinced that I have a bacterial issue - when i took the antibiotics for the E-hystolitica I felt so tired and terrible, aching muscles etc. then the following week experienced a week of the most mental clarity i have experienced in the history of my illness - this was after 10 days of doxycycline and paramomycin - then all symptoms came back 10 times worse - A simmilar thing happened following a short corse of tinidazole - i felt a level of calm and health I have not felt in years then again same picture - a week or so of feeling good, then my symptoms came back but even worse than pre-antibiotics. Would this fit a lyme picture? or is there no way that you would feel good after such a short corse of antibiotics and does it more likely point to intestinal bacterial overgrowth?

I'm not an expert, but it does seem to fit with what would be expected with SIBO, e.g. see this page.

 

[MeSci]

I'm not an expert, but it does seem to fit with what would be expected with SIBO, e.g. see this page.

and replying to myself...

Thinking 'out loud' now without checking anything...

As acidic stuff seems to help you, maybe worth either eating more acid-producing foods (there are lists of these) or less acid-requiring foods. For example, stomach acid is mainly required for breaking down protein AFAIK, and I seem to have a tendency to be too acidic, so I take sodium bicarbonate, as I am a vegan and probably don't need much stomach acid to digest my food. The bicarb seems to help me, but may be totally the wrong thing for you.

I wonder whether grapefruit seed extract (GSE) would help you? It is supposed to be a natural antibiotic, and I think it may be safer for taking long-term than pharmaceutical antibiotics. I think it's probably also acidic, but that it shouldn't be taken with pharmaceutical blood thinners, because I think it also thins the blood.

I take Viridian brand GSE capsules from time to time, and have taken it for fairly long periods (months) with no apparent ill-effects. You can also buy liquid GSE (e.g. brand Higher Nature), which may work out cheaper. It tastes very bitter, but that doesn't bother me (I sometimes use it diluted as a mouthwash). Caution - GSE can also stand for grape seed extract, which has different indications/properties.

 

[JaimeS]

I would suggest wandering around here a bit. There is an enormous amount of information, and you can take your time with it.

For me, racing thoughts was a sign of serotonin toxicity. I have a SNP that means I process mine quite slowly, and back when my system was hyper-reactive to every-bloody-thing, even foods that contained tryptophan were enough to start me on a looping-thoughts track that was so awful. I eventually found through experimentation that a double-dose of my antioxidants + high B-Vitamins pill would derail that train, sometimes so instantly and dramatically that it was a bit disconcerting. Unfortunately, everyone is different, and these are too excitatory for others. However, I was already taking them and had "started low and gone slow" so doubling them wasn't a big deal by that time.

I found that low B-levels are associated with OCD and LOWER B-levels were associated with depression. That thought-looping thing made me think of OCD, so I gave it a go. It's almost 100% pure luck that it worked - which is part of what is so maddening about this illness. You practically have to have a supplement set in your path and stumble over it. There's so much that's out there, and everybody's body works differently and, frankly, I think that ME is a syndrome with multiple 'initial insult' factors, which compounds the problem.

@MeSci is right on the money, re: GSE. It's quite strong and perfectly able to give a Herx reaction despite being 'herbal', so beware. Also, as s/he says, GSE is a liquid product you put into water and drink; grape seed is a powder in a capsule. We are referring to the former, not the latter.

Here is what I have taken and how it helps me, but really it seems you almost need to take a step back from advice and let go of what you have and haven't tried and start from scratch. I was taking Co-Q10 with barely noticeable effect and I wondered if I were wasting time/money until I received advice here to up my dose dramatically. I did, and WOW. Definitely not removing that from my list of OTCs anytime soon. Sometimes we find we haven't been waiting long enough (I felt the same about Vit D... it's not working! Two months later....) or at a high enough dose (see CoQ-10) or we started too high and had a negative reaction (remember to 'start low and go slow'...) There is SO MUCH out there and it works differently for everybody and we're all so desperate for answers. I know what it feels like to be losing hope. I think we all do.

But many of us here are proof that you can, if not reach 100%, then improve. Feel free to contact me via IM if you have any questions about anything. I have strong boundaries and no trouble letting you know if I have the energy to speak with you at the time or not.

Let me join everyone in welcoming you to the forums! If nothing else, you will get a lot of support, here.

-J

 

[SOC]

Regarding the lightning process, it was available to me for little to no cost, so i don't regret it, it's not so much that im telling myself im not ill when im using it, more that im using it to create visualisations that help switch my sympathetic nervous system off, and achieve a calmer state.

Do you actually have any objective evidence that your visualizations are switching your sympathetic nervous system off (which doesn't sound like a good idea, anyway), or are you just trusting what the people making money off LP are telling you should be happening?

Also, there is no evidence that a driver-achiever personality has anything to do with developing the neuroimmune illness ME/CFS. People of all backgrounds, ages, and personalities develop ME/CFS. The story that it has to do with being an overachiever is a complete fabrication by the psych lobby in order to claim this is a mental illness that falls under their treatment domain. They have no evidence to support it.

If LP is making you feel better, then it makes sense you want to continue with it. It's not a treatment for ME/CFS, however, so if you want to improve your physical health you will need to find some medical (not psychological) treatments. Granted that is not easy to do in the UK as none of the top biomedical specialists are there. KDM is probably your best bet.

 

[trickthefox]

I'm not here to debate the lightning process, I realise there is a lot of controversy surrounding it, however I was offered by a practitioner to do it for free, so never felt exploited, infact it was a really great weekend where i felt really supported - and i had connected to many people who had made a complete recovery using it alone - you may argue that they never had M.E. in the first place, and were suffering from something psychosomatic but regardless if it helped improve someones life, thats all i need to know really. No it didnt cure me, but it made me feel a little better, and cost me nothing. Comparing this experience to breakspear hospital in the UK - where they use strictly medical intervetions - i paid probably close to £3000, had a battery of testing done, felt like i was on some human conveyor belt, got some prescriptions, and following their protocalls I went from being able to live a relitivley normal life, to being completley bedbound for 4 months. I like to keep an open mind - The mind-body connection and dysregulation of the autonomic nervous system, and the impact of stress on health is something with plenty of science and studies behind it. I think scepticism is useful up to the point where it limits you from being open to treatments which may help.

But i'd like to state again that what I was really looking for from my message wasn't a debate on a certain therapy or particular medicine - it was some insight on a human level on how to keep going, and how people keep the strength to push through, and wanted to know how you do that when you stop trusting the medical community - which includes top biomedical researchers and alternative practitioners alike. I just want to get better... but i feel hopeless

 

[lansbergen]

and wanted to know how you do that when you stop trusting the medical community

As with every community it has good and bad members.

I already knew the limitation of medicine before I fell ill. The good ones only can do as much as medicine knowledge goes.

 

[MeSci]

@MeSci is right on the money, re: GSE. It's quite strong and perfectly able to give a Herx reaction despite being 'herbal', so beware. Also, as s/he says, GSE is a liquid product you put into water and drink; grape seed is a powder in a capsule. We are referring to the former, not the latter.

No - grapefruit seed extract comes in either capsules or liquid. I take both. You just need to check the full name of the product when searching and buying! I've never had a 'Herx' reaction from it, but then maybe I didn't have the specific pathogens that can cause that during die-off.

They do seem to have helped my gut a lot in the past, but less so recently, presumably because my gut microbiome is different now and/or I am making different mistakes with diet and/or supplements!

 

[MeSci]

I'm not here to debate the lightning process, I realise there is a lot of controversy surrounding it, however I was offered by a practitioner to do it for free, so never felt exploited, infact it was a really great weekend where i felt really supported - and i had connected to many people who had made a complete recovery using it alone - you may argue that they never had M.E. in the first place, and were suffering from something psychosomatic but regardless if it helped improve someones life, thats all i need to know really. No it didnt cure me, but it made me feel a little better, and cost me nothing. Comparing this experience to breakspear hospital in the UK - where they use strictly medical intervetions - i paid probably close to £3000, had a battery of testing done, felt like i was on some human conveyor belt, got some prescriptions, and following their protocalls I went from being able to live a relitivley normal life, to being completley bedbound for 4 months. I like to keep an open mind - The mind-body connection and dysregulation of the autonomic nervous system, and the impact of stress on health is something with plenty of science and studies behind it. I think scepticism is useful up to the point where it limits you from being open to treatments which may help.

But i'd like to state again that what I was really looking for from my message wasn't a debate on a certain therapy or particular medicine - it was some insight on a human level on how to keep going, and how people keep the strength to push through, and wanted to know how you do that when you stop trusting the medical community - which includes top biomedical researchers and alternative practitioners alike. I just want to get better... but i feel hopeless

I had assumed that Breakspear was at least relatively harmless until I had a look at their website recently. This is a quote from a message I wrote in another thread:

That would be Breakspear. TBH, I'm not convinced that they know what they are talking about. I've just been reading some of their pages and some of it seems speculative and unsupported by science, and some odd statements crop up, such as "high potency probiotic preparation called Escherichia coli." That 'probiotic' is AKA E.coli, a bacterium that has many strains, some of which cause serious disease, and some of which are benign as long as they are in balance with other gut bacteria. To talk of a 'probiotic preparation called Escherichia coli' is IMO bizarre.

Hopefully you have found some useful suggestions here. I think that what keeps most of us going is the knowledge that research is going on, that there are people here who are trying and have tried things and are dissecting every bit of research and knowledge and media coverage that crops up.

Stick around, and hopefully you will benefit from the sense of community at the very least!

I have a Masters degree in medical science, and there are others here with science backgrounds, including some who have held senior positions in their fields.

But those of us who also have ME can't always get their brains around the science due to brain fog (very common for me lately! ), and I am instead often relying on those with better-functioning brains to do the thinking and I just read their analyses until my brain wakes up again.

I can't think of anywhere else I can get this. It's great.

 

[MeSci]

Another point on trust - I have come to think that one of the best signs of a person being trustworthy is when they admit that they may be wrong, or that they are not sure, or that they have changed their minds and think that they have made mistakes.

Even some of the most eminent scientists get things wrong, but it can be hard to admit to error, especially if one's hard-earned reputation and/or career depends on it.

I have come to regard some people on here as very able and trustworthy, and they are those who have the twin qualities of ability and honesty. But I don't think they would want me to follow everything they said without a healthy degree of scepticism.

When I first got my degrees I became over-confident of my knowledge, and gave a friend some incorrect info. I corrected this when I realised. She alarmed me by saying that she believed everything I said. I told her not to!

 

[MeSci]

I think scepticism is useful up to the point where it limits you from being open to treatments which may help.

But i'd like to state again that what I was really looking for from my message wasn't a debate on a certain therapy or particular medicine - it was some insight on a human level on how to keep going, and how people keep the strength to push through, and wanted to know how you do that when you stop trusting the medical community - which includes top biomedical researchers and alternative practitioners alike. I just want to get better... but i feel hopeless

A lot of us - maybe most of us - have had stages when we felt hopeless. Some of us have even attempted suicide, and very sadly some have succeeded.

But most of us have regained hope, so there is hope you can too!

 

[trickthefox]

Hi MeSci

i believe the Ecoli probiotic they are reffering too is Mutaflor, which is a preperation Dr Myhill and KDM both use, i actually found quite a lot of help with it - it is a well researched strain that helps produce tyrosine, tryptophan and dopamine which is probably why i benefit on such a restricted diet. It is a very specific strain of Ecoli, but with any probiotic, they are all very unique and individual so while some may benefit, some may get lots worse, with me i cannot tollerate many of the acidophilus probiotics, but do well with certain strains of bifidus, and one strain of lactobaccilus rhamnosus. They all have various different immune modulating functions, some affect histames, some affect lactate levels, so i think for those of us with dysbiosis issues, it is a very individualised painstaking process to find the right ones

I think the main problem with breakspear is they are very allergy focused, and probably diagnose many of their patients with allergies and give them allergy shots which are very expensive and alot of people probably don't need them, this was reccomended to me but i didnt go down the route, because id done lots of researching prior, however I did start taking a mast cell stabalizer (nalcrom) because they suspected i had a mast cell disorder, paradoxically this actually made me much worse, and actually made me develop a stronger reaction to histamiese than before i took it. They also got me on a huge amount of supplements which i belive made my dysbiosis much worse. The positive i took from it was a long term prescription of powdered nystatin which has helped get some of my brain fog issues under control