The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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What to do next?

Discussion in 'General ME/CFS Discussion' started by jay185, Jul 24, 2016.

  1. jay185

    jay185

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    Hi all,

    I have had chronic fatigue over 4 years now going on 5 with little or no real help other than a IND band 39 and 41 on a lyme test. However i am reaching a breaking point where i am extremely angry for no real reason, constantly negative thoughts(prior to CFS i was a positive person), constantly wanting to fight etc.

    Lyme doctor has thoroughly annoyed me saying i must travel 4 hours each way to see them and they will not prescribe me the medication unless i travel to see them, cant afford it. I think i am still trying to heal leaky gut but to be honest i dont think its healing.

    This is all on top of the symptoms i already have, now i am worried since anytime i have anxiety i am getting a sharp stabbing pain in my head, as you can imagine it is scary. I sit here while my life just deteriorates.

    I am lost and sick of not being given any help from doctors and have decided i will try for support allowance which i tried for in the past saying it was just anxiety, i believed them out of naivety and simply got worse.

    But i know this is biological and not psychological. Psychological problems are secondary.

    The only thing i have done is started taking colloidal silver and doing a cure for Lyme's disease which is Stephen buhner's protocol. I am not seeing any real change, the only change i am seeing is worse crepitus and more fatigue as time passes. All the money i have spent on stuff is crazy.

    So now i come here hoping someone may be able to give me some direction, first i want to try for disability support again but expect to be rejected again. Second i really want to know if its worth trying some of these mitochondrial repair products such as N-Factor or ATP type stuff.

    Either that or attempting an approach of feeding myself with positive bacteria since i am clueless.

    I am at my ends and thinking of giving up my life at this point. I feel i have been ripped off by doctors over and over again.

    If you have any direction of what i should try next please do, i dont know whether to try mito type products or focus on feeding myself positive bacteria, but whatever i do perhaps i will ruin my body further.

    Thank you for listening, please excuse any anger that comes through in my post, i am in a very low place.
     
    Last edited: Jul 24, 2016
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  2. Keela Too

    Keela Too Sally Burch

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    I don't have any answers, but I didn't want to read this post and click away.

    I think we all go through cycles of despondency with the way that we are treated (or rather not treated) for our illnesses. A four hour drive to a doctor who is not helpful is futile.

    One of the best things I found to help was rest... but I understand that the less well rested your body is, the more wired/tired the brain becomes and so the harder it is to rest. So difficult.

    I hope someone else will be along soon to help you with the questions you have. Hang in there. xxx
     
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  3. jay185

    jay185

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    Hi Keela thank you for the support.

    I am constantly getting real negative thoughts today that create anger and anxiety, i know so far this is down to the actual disease (infection). Its hard to see myself complain and be angry when i know this is not really the person i truly am, that alone is enough to depress someone, knowing your watching yourself be an angry person that is not the real you.

    I may post a thread in the Lyme section, i suppose it makes sense that someone over there may be able to add what i am maybe missing from my protocol and see what they say over there.

    Perhaps i will just rest my mind for a while and lie down. It seems clearing my mind is probably the key here so that my thoughts are not running all over the place. What is so sad for me is that i finally found out what i wanted to do with my life, i had high hopes for the future, ambitions, goals etc only to be knocked down with CFS.

    PS: For anyone who reads this: How does one go about getting disability support in the UK? I am not a very streetwise person if i am being honest, where do i start?

    *Hugs*
     
    Last edited: Jul 24, 2016
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  4. Keela Too

    Keela Too Sally Burch

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    I think finding ways to let your mind rest is very useful. Trite as it is, the saying "time is a great healer" is not totally inaccurate - especially if that time is resting time :p I found that audio books were a good way to relax - if you can listen to them sitting outside in a green space I think that helps some extra.

    As for applying for benefits. I know there is a good FaceBook group where there is lots of help and support for folk with ME and related illnesses: https://www.facebook.com/groups/278260135547189/
    I'm not actually a member there, but have heard very good reports.
     
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  5. jay185

    jay185

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    Hi again Keela, thanks for the link. I have a bit of a complicated issue here though.

    I cannot join the group because i dont use facebook, i have made a profile but would rather not have to start adding friends and sharing photos (i made it clear to myself years ago that i was giving up the facebook stuff for good).

    Unfortunately this is a problem, how can i get in the group if i am locked out of it by default? I will try PMing one of the admins of the group and see what they say.

    I am more relaxed now. I am a bit worried i have damaged my brain or something though because i get strange head pressure. Its not going away and my mood is flattened, memory not working well and just a feeling of weirdness
    that i cant really describe inside my head.

    Thanks
     
  6. Keela Too

    Keela Too Sally Burch

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    I know one of the admins. If you like I can PM her and ask her to look out for your request to join? Maybe you could let me know by private message the name you use on FB, so I can say to her?

    Most groups will by default reject "empty" FB profiles. So it might be another admin will see your profile and just automatically reject your request to join. I admit that is what happens on the group I admin.
     
  7. Keela Too

    Keela Too Sally Burch

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    Re your head sensations. It "could" be just the aftermath of the traumatic emotional time you have had. Heightened emotions also produce a type of PEM in my experience. Obviously if you think it might be something different I am no doctor, but I do know that after major migraines I can feel a bit as you describe. Giving yourself permission to rest for a bit will hopefully clear that up some. xx
     
  8. jay185

    jay185

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    Please :) I tried to add one of the admins; her name is "Jane Clout".
    Yes i can send you my name in private message.

    I am one of those few people who dont really like or use facebook, i dont really have any friends there (as sad as that sounds).

    It pains me to say that those of us with CFS find all of this filling out forms and calling places a hindrance that simply adds to our stress levels, i wish it did not. But i am glad such groups exist out there.

    Appreciate the help as always.

    PS: How does one private message on this forum?
     
  9. Keela Too

    Keela Too Sally Burch

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    I've sent you a message. It should be in your inbox (top right of page).
     
  10. whodathunkit

    whodathunkit Senior Member

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    @jay185, if you're taking colloidial silver and your emotional symptoms (or at least your worst emotional symptoms) started after this, you may be experiencing inflammation from die-off of some sort. I'm sure as a Lyme sufferer you're familiar with the concept of die off. Apologies in advance if this is all redundant to you.

    But eliminating candida and other endotoxin-producing organisms (including mold) besides Lyme can promote big time inflammation, too. I'm just beginning to realize that inflammation may be behind a lot of my lifelong moodiness. It would be pretty hard to be angrier than I've been at different times in my life. It comes and goes, but when it comes...sheesh. Mr. Hyde got some competition. I've also been very despondent and suicidal. Within the caveat that we can't possibly know everything another person feels, from what you write it sounds like I have walked at least a little bit in your shoes.

    I wish I could help you more that I can with what to do about this, but am just now in the throes of realizing that inflammation and endotoxin may actually be a big problem for me, and figuring out what to do about it. This is kind of a "drive-by" post just to give you food for thought. I'm currently flailing around trying things that may or may not work, myself. I've peeled back a lot of layers of nutritional deficiencies and mitochondrial dysfunction and whatnot since I've been around PR, and now may be approaching the bedrock of what's really wrong with me, which *could* be inflammation caused by toxins and endotoxins. We'll see.

    One thing I know that can help "scoop up" die-off by-products is activated charcoal. I've used this with good effect.

    Humifulvate is another thing. And Modified Citrus Pectin. Beware that humifulvate and MCP are both pre-biotic fibers and so can also cause some immune reaction via other bacteria in the gut. They don't give me problems but others around PR have had sides from them.

    I'm also planning on trying other things like Zeolite and bentonite, but they can be controversial so read up before trying. Also beware because they can be constipating. I know that for a fact. :wide-eyed: ;)

    If you're interested in this line of thinking or it resonates with you, I'd recommend researching things that can clean up endotoxin. Nothing is better than due diligence, and we're all so different, what works for me might not work for you.

    I liked NT Factor and got a lot out of it. I believe it gave me an energy boost, both mentally and physically. Some really sick people get sides from it, though, so go slow or at least monitor yourself closely. BodyBio PC I found to be expensive junk. IMO NT Factor is much more effective. Definitely it's cheaper.

    Good luck! :)
     
    Last edited: Jul 24, 2016
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  11. Mary

    Mary Senior Member

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    @jay185 - I just wanted to say you're not alone, and I'm really sorry you're having such a rough time. Unfortunately most of us have had a very hard time getting any help from doctors and basically try to figure things out on our own, with a lot of help from people on places like this board.

    I don't have lyme so can't advise you at all there, though there are people who can. I have tried a lot of mito supplments and spent a small fortune on different things, and after years of experimentation have found a few things that help. NT factor didn't help me but it helped whotdathunnkit - so we're all different, Things that have helped me are D-ribose, CoQ10, methylB12, methylfolate, P-5-P (B-6), B-1 (in addition to a B complex). Branched amino acids have also helped me. L-carnitine did at one time. Keela Too has some good advice to just rest for awhile. Maybe try a relaxation tape or meditation if you can? This may help keep you focusing on what you need to do. I do believe there's help, there's research going on now that has been long neglected and hopefully we will get some answers soon. And in the meanwhile we fumble along and every once in awhile get it right.

    Re disability - I don't know anything about getting disability in the UK. I tried to get disability here in the U.S. for ME/CFS and was denied and then my doctor added a diagnosis of PTSD and I got it. So even thought the real reason I could no longer work was ME/CFS, they gave me disability based on something else. So you may have to do something like this.

    I hope someone here can help you. I don't think there is one right answer of what you should do next. The most important thing I've found is to try one thing at a time, so that you know what is doing what to you.

    Take care --
     
  12. jay185

    jay185

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    @All. Hi, thank you for popping in and sharing your experience as well as suggestions.

    I just want to update you all that my pressure headache isn't going way and i can feel something in my head as if it is moving around, i really do hope i have not had a mini stroke which is why i am considering going to the hospital today to get myself checked. My reading and understanding and retaining memory suddenly isn't the same, i hope this is something fixable and just temporary but i cant say it looks good as i have been like this since Friday evening.

    I remember getting angry over something (infections unfortunately like this steal serotonin from the brain so its very easy to slump into anger). I remember after anger subsided having moments of "shakeups", unfortunately when your stuck in fight or flight someone getting stabbed in a movie is enough for you to have an adrenal rush. I then had what was followed by what felt like an explosion in my head, not on the major side but enough for me to sit up and take notice. So I would be lying if i thought it was just the usual headache, I feel a bit disorientated also.

    The best case scenario is that its an adrenal problem spiking but even then i am not sure if that bodes well. Fingers crossed it is not serious.

    There is no doubt however that my muscles and bones have gotten worse i.e weaker,tired. But whether that is toward a good ending or a bad ending i am not sure. I did not have the typical herx responses but i am sure it is an infection because i get ill during the full moon (a tell tale sign of certain infection), however what is strange is i did not feel anything the last two full moons, i am not sure what to think on that front.
     
  13. jay185

    jay185

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    @Who; i really feel you on this, suicidal/despondent thoughts are terrible and i hope no one has to go through these states of mind that are very easy to slump into when the brain and body is out of balance.

    I have seen so many people with CFS who have infections that are well hidden within the body, it would not surprise me if the cause of your illness is indeed infection, which infection is another matter, it seems to me that its either one of these infections like lyme and co that try to hijack the body slowly but silently or its one of the more parasitic ones that hide in the intestine stealing all the good food you eat. With Lyme you tend to get the whole shebang of effects slowly over time, mine started with Vitamin D and B12 problems as well as liver enzyme problems.

    I am considering Hulda Clark's protocol at some point which is maybe worth a mention. Beyond what has already been suggested i cannot think what else to try except try the Hulda Clark method as by the time i get around to it then i will have some idea if Bunher's protocol is working as i am half way through it.

    One thing for sure is that i probably should add more detox to my protocol. I may go with the activated charcoal and some other suggestions you left. Glad to hear someone has tried NT factor and had a good experience, i may try it. Question; with the NT factor is it supposed to cure us of mito dysfunction and energy levels or simply only increase energy levels? Is the NT factor only good long term if your actually killing the infection simultaneously?

    I want to tell you that i tried something called prodovite suggested by a doctor; i dont think i felt any different with it which made me feel it was a waste of time. It is supposed to be something taken to regenerate the cells in the body, it is possible i did not take it long enough but not feeling any different with it did discourage me, costs soon add up.

    Regarding moodiness i have noticed having this into my late teens and throughout my life but they were more like random bursts, in my early 20s i started becoming more familiar with psychology, i became an extremely positive person and aspired to become a psychologist, its been very difficult for me, like my life has been snatched away.

    @Mary. Its interesting you mention PTSD because i went through a tough time in 2012, at new years 2011 i was left by my partner at the time, painful but dealt well with that then after this i lost someone close to me and that affected me for several months to the point i was just lying around depressed, unfortunately i always make the mistake of not seeking help when i should, then one day i was sat down eating and that was when i was struck with CFS, i remember vividly getting a cold leg, my arms were shaking, i felt woozy and dizzy, i could not stand up without my legs shaking and my body was overcome with strange weakness all over like continuous flu.

    At first i was thinking i must have PTSD or something but a doctor said its possible but he said he thinks the PTSD has in fact made an infection come out of dormancy (i.e Lymes) and taken over the body, at the time it really made sense to me so i went to get checked for many infections ranging from STDs to Lyme and co. It may be i have other infections but simply have not done the tests yet. One of the strangest symptoms i got was a lack of flexibility, there is a real issue with my muscles and i keep seeing this term used called "systemic mast cell disease" or something similar. Right now i feel like my muscles are not just weak but feel like they are tearing easily.

    Regarding CoQ10 i read it cannot sometimes get into cells properly so alpha lipoic acid helps this to get in there. I am tempted to try the combo as it may be what i need, with that said i am wary that people who have blood sugar issues may have to be careful, i have hypoglycemia so i need to be careful.

    I did exactly what Keela told me, i am now calmer but unfortunately my brain pressure has not improved even after a good sleep and relaxation state, Would you imagine a mini stroke would show up on ECG?

    With regards to disability pay i joined a Facebook group Keela suggested and the people there have been very helpful, i now just to get the form to fill in and ask my doctor nicely for a sick note explaining my problems. No pain no gain, being positive keeps me going and if there is one thing i can be

    Like you said I think i will just choose something and commit to it and see what happens keeping note of what works and what does not.
    Unfortunately my ability to read and understand has shot down since the head explosion thing.

    Thanks all
     
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  14. justy

    justy Donate Advocate Demonstrate

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    I am sorry you are feeling so ill right now. I think if you have Lyme, then you really need treatment for that - nothing else will work to heal you permanently until the bacteria are killed. If you have Lyme then you will most likely have co infections as well. I have Lyme and like you also leaky gut, most likely caused by the lyme.

    my health is a real mess and treatment for me is hard for a number of reasons. I have had weird sensatios in my head and my memory is shocking these days.

    In terms of getting benefits, I get ESA and am in the support group, I also get DLA for mobility issues, and now Social services have agreed direct payments so I can have home support.

    I found Benefits and Work website invaluable and used their guides for filling in the forms. You have to pay to join the site, but it was well worth it for me - they also have advise on appeals etc.

    Good luck!
     
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  15. jay185

    jay185

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    @justy. Hi there, i can totally relate and wish you well on this journey, i support you all

    And thanks for sharing, we are not much different and share many similarities. Glad you were able to get help financially. Can i ask what you are taking in your situation?

    I am going to apply for ESA once i get back from hospital and have woken up a bit then call doctors.

    Right now i can sum up my brain problems like a big wall between my thoughts and my emotions, same with my memory, i simply struggle to access my memory. Last week i had no problems researching ok, now it is much harder.

    You're right. Yes leaky gut is a side symptom of chronic lyme, this was one of the first things i learnt also from a doctor in the states, he said that they also down our magnesium like its going out of fashion hence the chest wall issues and soft tissue many of us have; same with serotonin and gaba levels - as well as others i mentioned above.

    Serotonin is apparently important for metabolism and gaba required for a good sleep, i have put on so much weight since the age of 19, i used to be very skinny/slim, also have insomnia, it all adds up when i look back on this.

    I struggled to get out of the bath before, my head is so dizzy and i am so weak and disorientated. First time that has happened to this degree, before it was much milder. Truly wonder what happened to me over night.

    Even though i have asked for help i will try to share some things i have learnt in the case it helps anyone here. Hope everyone is keeping strong. I am about to go the hospital, if i come back with no sign of stroke then i am at least glad as that may mean what has happened in my head is fixable and not permanent. We will see.

    PS: A Big red blotch has appeared on my lower tummy, think the size of a button on an old mobile cell phone. I have no idea what this is.. i have taken a picture of it though. And I do wonder if this is related to Lymes.
     
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  16. jay185

    jay185

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    Just wanted to let everyone know my blood pressure was ok at the hospital, my co-ordination test was fine, i do not have any answers to what has happened to my brain because i have to wait some time to see the doctor next week.

    Hopefully i have not lost my memory or cognitive function permanently. Fingers crossed.

    Will update if anything comes up, i will try out some of the suggestions.
    Thanks
     

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