Ongoing Symptoms Without Diagnosis

fivespice on 24/01/2017 - 14:53

Hi all,

Preface: 27 year old male, prior to symptoms I was generally fit and healthy but was quite overweight and had poor diet around ages 19 to 22.

I won't get into the exact symptoms that I am/was experiencing unless somebody specifically wants to know.

In June 2015, I started to experience bizarre and vague symptoms that I had not previously experienced before. These symptoms affected multiple systems in my body (neurological, auditory, physical, visual etc.) and whilst these issues impacted me severely, I wouldn't describe my issues as debilitating.

I saw countless GP's, 2x ENT's, a neurologist, many blood-tests and had an MRI of the brain. The only thing that ever came back was a positive test for Epstein-Barr Virus (also known as Mono or Glandular Fever). Never got an official diagnosis and most doctors put my issues in the too-hard basket.

After approx 3-4 months, most of my symptoms subsided but some things were still lingering. I stopped pursuing the issue and visiting doctors.

December 2016: Started to experience strange gastrointestinal symptoms followed by many symptoms that I experienced previously in June of 2015.

So my questions are:
-Has anybody experienced something like this before and did you/they manage to get treatment?
-Where is the best place to go to see a doctor who will consider this as a whole-body issue rather than seeing an ENT/Gastroenterologist etc.
-I'm even considering some alternative medicine such as Acupuncture in the absence of adequate treatment through the normal medical channels. Is this a bad idea?
-Any other advice is appreciated.

Thanks everyone.

Health & Beauty

closed Comments

      • Scrooge McDuck on 25/01/2017 - 23:40
        +1

        You could buy a sleep tracker and keep a sleep log. You might find a correlation between your symptoms and lower sleep quality.

  • Sweet3st on 24/01/2017 - 19:26

    I would stick to the diet. I had an illness like this, glandular fever, yuppie flu whatever many years ago. Nothing worked so I ended up going to a naturopath. He did 'food allergy' tests and then put me on a very restrictive diet; no alcohol, coffee, tea, wheat, dairy amongst many others. I was sceptical but it was the only thing that worked for me.

    • fivespice on 24/01/2017 - 23:10

      Thanks for your input, did it pass for good or did your issues ever return? Would you be able to share the name of the naturopath?

      • Sweet3st on 24/01/2017 - 23:46

        Ross Partington Paddington Sydney. Passed for good after a few years. Do you get night sweats?

        • fivespice on 25/01/2017 - 17:12

          I do not get night sweats currently. I recall maybe having night sweats a couple of times back in 2015 when symptoms first appeared but I do not believe it was prolonged.

  • Chris Topher on 24/01/2017 - 20:11
    +1

    A condition very hard to diagnose is Ehlers–Danlos syndrome.

    https://en.wikipedia.org/wiki/Ehlers%E2%80%93Danlos_syndrome

    I am not a doctor.

    A doctor, nor any medical professional, would not post a diagnosis here as the only reliable medical professionals on the internet are Drs. Google, Bing, Ask Jeeves, and others.

    Whatever you do do, do NOT over-diagnose, under-diagnose or believe any medical advice on the internet. Get ideas and discuss them with a G.P. look for a FRACGP certification framed and hanging on the wall of the practice room.

    • fivespice on 24/01/2017 - 23:09
      +1

      Thank you for this information, really appreciate it. I am trying to work with my GP at the moment and try to get some information via various tests.

    • HerpinDerp on 26/01/2017 - 17:53
      +1

      I wouldn't jump straight to EDS. There's another bad condition with similar symptoms. Just stick with good profs/specialists. Some of these bizarre systemic conditions are difficult to diagnose, you will always encounter patients with non-textbook presentations.

  • Bidsmac on 25/01/2017 - 09:08
    +7

    Hi
    In 2015 I had EBV and after lingering symptoms into 2016 (& exhaustive tests), my GP referred me to a 'General Physician' who specialises in hard-to-diagnose medical issues. I was diagnosed with post-viral fatigue (aka chronic fatigue syndrome). Slow recovery with no meds that can help (besides symptom management), so acupuncture, Chinese medicine and holistic (mind/body) self-care have me on the slow & bumpy road to recovery. I hope you don't have PVF but it sounds like something u might like to look into or at least rule out as v common following EBV. Best of luck :)

  • shortblack9 on 25/01/2017 - 09:47
    +10

    Ex-hospital pharmacist, current pharmacist & pharma industry medical information specialist.

    I would agree with the advice to seek a specialist GENERAL PHYSICIAN (i.e. Aussie Dr House - hopefully without the attitude and addiction). Maybe if you ask the doctors you have seen, "No offense intended with this question, but I'm desperate, so if you were me, which doctor would you go to? Who is the best diagnostician you know?"

    Last thing, EBV and other conditions can shift into a chronic condition/symptomatology quite easily. There is a spectrum of disorders that are chronic and usually put in the too hard basket: fibromyalgia, chronic fatigue, irritable bowel, etc. Your condition is very reminiscent of these types of chronic conditions. They present with symptoms that cannot be objectively measured, but are definitely felt by the person. These disorders have a central nervous system component to them (i.e. the brain is so used to feeling a particular symptom, that it then creates the symptom because it is the "new normal" for the brain). Maybe have a chat to your GP/General Physician. In my experience, not all Neurologists are familiar with this… it's usually pain specialists and rheumatologists that deal with these conditions.

    In relation to alternative medicine, do a search in PUBMED regarding "acupuncture and gastrointestinal and systematic review". Systematic reviews give the definitive word on the current state of knowledge in a particular treatment/condition combination.

    I hope you get a solution! All the best!

    • fivespice on 25/01/2017 - 12:03

      Thank you so much for this information, I appreciate it. I will get a referral for a General Physician next time I see the GP and consider seeing a rheumatologist.

      • Kempe on 27/01/2017 - 11:06

        I have rheumatoid and the activity can be discovered by blood tests, THEN the GP will refer you to "see" a rheumatoid specialist, you cant just ask for a referral to see one without prior diagnosis
        You really do sound like you are a hypochondriac searching for an illness to hang a label on

        • fivespice on 27/01/2017 - 11:24

          You're right. I went from feeling perfectly normal to feeling like a lethargic bag of garbage with a permanent high pitched ringing in my ear in the space of a week because I "wanted" to have an illness.

        • Kempe on 27/01/2017 - 13:52

          @fivespice:

          Well that is not RA so you can rule that out, no blood test needed

  • [Deactivated] on 25/01/2017 - 11:39
    -5

    Go see a Chinese medicine practitioner. Even if their medicine is actually a placebo, they still have knowledge and will pick up on things that doctors will not consider, because they look at your body holistically. If the treatment helps with some of your symptoms, even better.

    This probably doesn't apply to you now, but don't let any doctors tell you it's a symptom of you're weight. Doctors love to blame things on people's weight, and often will not listen to your actual problems.

    As far as ideas for what your illness seems to be, join Facebook groups for different illness. It's a good way to find people with your same symptoms.

    You've had glandular, so start with general chronic fatigue groups, Lyme disease, fibromyalgia; even if you don't think it's what you have, doctors tend to go for the best diagnosis they can find, so members of these groups may have been misdiagnosed/have your symptoms, and you may still get helpful tips for dealing with your symptoms.

    People on the autism spectrum can experience sensory overload. Because medicine has very specific ideas about what autism is, many on the spectrum will not realise, or receive a diagnosis. So look into that too. This happened to a friend.

    • fivespice on 25/01/2017 - 12:08
      +1

      Thanks for your comments. I am considering your recommendations. I am happy to try anything at this point. My condition is not as bad as some anecdotes I have read from CFS groups and such, but I am being proactive and trying to deal with the problem before/if it gets worse.

      Also I am currently not overweight, I was overweight maybe 4 or 5 years ago. Thanks again for your advice.

    • [Deactivated] on 26/01/2017 - 00:43

      Even if their medicine is actually a placebo, they still have knowledge and will pick up on things that doctors will not consider, because they look at your body holistically.

      lol https://www.youtube.com/watch?v=WCZFsXV8Pnc

      • [Deactivated] on 26/01/2017 - 12:58
        -1

        Down votes for suggesting Chinese medicine? I know a heap of people with chronic illnesses. Western medicine fails them again and again. I'm not suggesting alternatives because I believe they have a cure, but because:
        *they listen to you
        *they consider things that doctors don't
        *they actually have a huge amount of knowledge about bodies, they actually know their shit as far as how bodies work, even if they express that in a way foreign to you
        *you can learn from them
        *I know people who have had good experiences with alternative therapies which has helped them to deal with their condition, where western medicine couldn't.

        All my other advise was solid, so dick move whoever down voted me

        • [Deactivated] on 26/01/2017 - 14:10

          I didn't downvote. Your post just reminded me of the Seinfeld scene :P

  • [Deactivated] on 25/01/2017 - 11:53

    Did you travel overseas in the year before you first became sick?

    • fivespice on 25/01/2017 - 12:06
      +1

      Yes, I traveled to Indonesia, Hong Kong and Japan. After I got back from Indonesia I had diarrhoea for a couple of days.

      • [Deactivated] on 25/01/2017 - 14:01

        Did you get any anti-malaria shots because there can be reactions to the shots and maybe compounding effects on top of glandular fever after affects
        ( totally guessing ) 👍

        • fivespice on 25/01/2017 - 17:13

          I did not have any anti-malaria shots. Guessing is ok, thanks for your input!

  • ssx on 25/01/2017 - 12:10

    Whereabouts are you located?

    • fivespice on 25/01/2017 - 12:17

      Perth

      • ssx on 25/01/2017 - 12:43
        +2

        Damn, I was hoping you would say Sydney. I've recently been referred to a really good Consultant Physician who listens to every silly thing I mention.
        I am in a similar situation, and sympathize with the struggle for a diagnosis.

        If you have facebook, I REALLY, REALLY recommend joining this group:
        "EDS Australia & NZ Supporting EDS/POTS/ME/CFS/Fibro/MCAD/Chiari/ASD"

        There are many people from Perth in this group who can recommend a General/Consultant Physician (one who specializes in chronic illnesses) in your area. It's also an amazing group for support, general venting and advice.

        Alternative Medicine - I would stay away from it, for the moment. Not saying it doesn't work. It could aggravate symptoms further, especially without a diagnosis.

        Current GPs - it sounds like you have two good doctors there - do they have access to each others notes? Ask for a referral to an Endocrinologist.

        Tip: When you go to a doctor, don't open with the overweight/poor diet thing - it can downplay your symptoms and the doctor can get caught up on the "eat healthy, do exercise" solution. Things like weight and diet can be a symptom, instead of a cause.

        PS: what are the specific symptoms (it's ok if you don't want to mention them)

  • The Wololo Wombat on 25/01/2017 - 12:48
    +11

    MATE

    I am exactly the same as you. I even had the same virus. The associated chronic fatigue has cost me relationships and two years of my life (productivity). I was JUST able to maintain a full-time job teaching, but only just. I am a different person now, my hair is going, I LOOK different from the effect of the stress.

    I went to over 12 different Drs and naturopaths. I tried everything. I also became hyper-allergic to existing allergies (my immune system went overboard) so I had constant sinus infections throughout the whole ordeal. I also became really irritable, everything was 'foggy'

    I am now ALMOST 100% better after getting a diagnosis from a specialist parasitologist (Dr Greg Emerson, treat the cause clinic). I had a systemic intracellular mycoplasma infection and I think you do too. Either that or Lyme disease (yes, it does exist in Australia). Both of these are intracellular bacterial parasites that damage the mitochondria of your cells. They effect EVERYTHING including your brain.

    I know I sound like a bit of a quack, but it happened to me. I have a Science degree, I don't consider myself whimsical and if it wasn't for my scientific, persistent approach, I'd probably still be suffering.

    I have PM'd you if you want to know more, happy to chat more. I'll give you my phone number.

    PS. Watch this video: https://www.youtube.com/watch?v=ZAbq-U6rHXU

    • The Wololo Wombat on 25/01/2017 - 12:54

      Apparently, I can't PM you (due you your chosen account settings) so PM me instead.

    • ssx on 25/01/2017 - 12:54

      I disagree - I don't think you sound crazy.

      Was there a test for it? Something fivespice can get a referral for?

      • The Wololo Wombat on 25/01/2017 - 13:01
        +6

        In Australia, you can get a (medicare) blood test which will show the presence of antibodies, but it isn't very sensitive, it only shows up for major infections of mycoplasma (which I previously had, after visiting Nepal, I tested positive).

        When it becomes systemic, there are fewer antibodies in your system. The mycoplasma also changes it's surface antigens to evade immune detection.

        There is another option, getting a DNA PCR test, but (apparently, according to my Dr) the Lab isn't recognised by the Government. It cost alot too

        So instead, he got me to send my blood to a German Lab, which is government recognised, to do the test there. I tested positive and started treatment. It did cost around $250 for me to get it done.

        I recommend finding a good Dr who will take your case seriously. Sorry to be offensive, but the regular GPs I went to were utterly USELESS. They questioned the authenticity of what I was experiencing and were not committed to looking into obscure options. Once the 10 min appointment was up, it was 'try (over the counter) nasonex… cya later'. I probably went to my GPs (and the specialists they referred me to) over 20 times over two years before I finally decided to look into other options. I ALMOST had nasal surgery until I did my own research and found it was only treating the symptoms. Now I am SO GLAD I didn't.

        • hashtagbargain on 25/01/2017 - 15:01

          Thanks for the very informative writeup…

          You mentioned you started treatment - What did it involve? How long did you take it? How were the results?

        • The Wololo Wombat on 25/01/2017 - 15:19

          @hashtagbargain:
          My treatment was to multifacited.

          The three major things were:
          1: Taking a supplement to help break down biofilms
          2: Taking a supplement which contained substances that restore organelles (inc mitochondria) (phospholipids, co-enzymes and others)

          Mycoplasma, being intracellular, damaged organelles, importantly, mitochondria.

          3: Going on a strict antibiotic schedule, 1 week on, 3 weeks off for eight months. All were mycoplasma effective antibiotics.

          There are several reasons why this is hypothesised to work, I can go into these if needed.

        • The Wololo Wombat on 25/01/2017 - 15:21

          @DCO90:
          PS. In the next few weeks, I am getting retested for mycoplasma! I literally just finished the treatment. I feel sooooooo much better, so I'm pretty confident it'll show up as negative :)

          I'm not what I was in 2013, before I got sick, but I'm 95% there.

        • Lexus101 on 26/01/2017 - 15:37

          Hi DCO90

          Can you kindly share the names or types of antibiotics you took to rid yourself on the Mycoplasma.

          Also, what specific lab test can we get to determine if we have the intracellular mycoplasma infection.

          I appreciate your sharing

          the very best of health to you!

        • Hen on 28/01/2017 - 12:23

          @DCO90: what were the supps you refer to in 1 & 2? very interested

        • The Wololo Wombat on 28/01/2017 - 13:16

          @Hen:

          Hi, So,

          1: For the Biofilm: Berberine tablets (3x day), later I also used Garlic tablets in addition to this

          2: To assist my mitochondrial/cell organelle repair: I took (brand) 'Research Nutritionals' ATP Fuel (x5 per day)

          3: The antibiotic schedule (seven rounds, though I extended it another month with clarithromycin) was as follows (1 week on, three weeks off)

          Doxycyline
          Minocycline
          Doxy + Rulide
          Mino + Flagyl
          Ciprofloxacin
          Clarithromycin
          Clindamycin

          I also took probiotics during my antibiotic treatment, to minimise the effect it would have on my gut.

          This was based on (controversial) Dr Cecile Jardine's treatment plan. But damn, it worked for me!

          See this video: https://www.youtube.com/watch?v=M9-kRAUg7Yo on how intracellular organisms (ICOs) cause chronic fatigue.

          Not that most of my blood tests were fine, but I did have one particular liver enzyme (I've forgotten what it was) that was raised. It was one of the ones that make Drs suspect hepatitis, but didn't come with other hallmark signs of hepatitis. It turns out that the liver enzyme was raised because mycoplasma was damaging my liver cells.

        • The Wololo Wombat on 28/01/2017 - 13:20

          @Lexus101:

          I can't remember the German Lab I used, but feel free to email Dr Greg.

        • Hen on 28/01/2017 - 13:58

          @DCO90: thanks for the detailed reply. I'll look into those.
          For biofilm busting (Borrelias, mycos, various gut fungi) I'm taking Candex, stevia leaf extract, & MC-BB-1 (Beyond balance). Have taken several of those ABs, tho' not all, so will investigate. A zillion other treatments tried or trying. Not huge improvement as yet (ME/CFS 9 yrs, catalyst dengue fever, super active life previously, very subdued life now). Will persevere until I win!

        • The Wololo Wombat on 28/01/2017 - 14:00
          +1

          @Hen:
          I can sympathise with you Hen, don't give up the fight!

        • captainandg on 28/01/2017 - 21:00

          @The Wololo Wombat: My god. This is incredibly dangerous prescribing. There is no rigorous evidence base for this therapy whatsoever. There is a very good chance that you are now colonised with multi-resistant bacteria that may be difficult or impossible to treat should you become ill and immunocompromised. Your doctor is a quack and you are spreading misinformation. I am a doctor who works in infectious diseases. Any infectious diseases physician in Australia would be appalled to hear of this type of treatment occurring. Whoever prescribed this needs their registration reviewed.

        • The Wololo Wombat on 29/01/2017 - 00:36

          @andg5thou: I understand the risks, I have a science degree. I've studied microbiology. I was desperate and a friend (also with a science background) had his wife go through similar things. He fixed her, so, with HUGE scepticism, I gave him a try. I encourage you to read more into the literature surrounding systemic mycoplasma infections (a quick PubMed/google scholar search) I did this before I started my treatment. They are bloody nasty to treat as they are intracellular. The purpose of a short course though risky, as I understand, is to stop the mycoplasma becoming dormant (I realise this is a simplistic explanation).

          But the proof for me is how I feel now.

          You have no idea how much better I am. I have my life back. I went over 12 different doctors, around five of which were specialists. Nothing. No help. I looked at diet, I looked at allergies, I looked at sleep, I looked did PCR stool test, I did sputum tests, I did several blood tests, CT scans, X-Ray, overnight sleep studies, naturopathy, looking into diabetes, Chinese medicine…. you name it. None of it helped. This treatment was the only one to help me, I suggest you open your mind to this treatment. Of course, my situation is just anecdotal support of the treatment working, certainly not empirical/statistical proof (It could be placebo driven coincidence), but given how bad I was, I doubt it, plus, no of that matters when it works for you ;)

          P.S. Out of interest, how would you treat a systemic mycoplasma infection? Or are you sceptical that such a thing even exists?

        • May4th on 29/01/2017 - 00:57
          +1

          @The Wololo Wombat:
          anecdotal evidence is not evidence, and correlation is not causation. if you have a scientific background you should know that. advocating non evidence based 'treatment' with significant adverse effects to vulnerable patients suffering from debilitating chronic illnesses who are desperate to grasp at straws is extremely irresponsible at best.

        • The Wololo Wombat on 29/01/2017 - 02:02
          +1

          @xbai: Yes, I understand, I was conceding that point (which is why I mentioned it), it is anecdotal, but it is still evidence and at the end of the day, I am cured.

          OP has been down my path. He's found that regular GPs and the specialists they have referred him to aren't working out, I'm suggesting an experienced, successful and qualified Dr who will try alternative treatments and has had success with them.

          You are making the assumption that the treatment isn't evidence based, you are also assuming that Andg5thou's assertion that my Dr is a 'quack' is correct. With all due respect, both you and Angd5thou are do not know the Dr, and do not understand my diagnosed disease. I asked that you look into some literature yourself, clearly, you have not done that.

          You've called my sharing of information and success irresponsible. What do you want me to do? Not share my story of success against a disease that has almost ALL the hallmarks of OPs disease? I would argue that THAT would be irresponsible. I only wish I'd found Dr Emerson sooner.

          One thing that has become increasingly clear throughout my ordeal, is the arrogance of some within the medical profession.

        • May4th on 29/01/2017 - 08:45

          @The Wololo Wombat:
          again, anecdotal is not evidence, it's a story. a happy one at that and i'm happy for you but i maintain advocating a specific treatment which costs substantially both financially as well as in risk of serious side effects portraying a miracle cure is irresponsible.

          i did not call your doctor a quack, i am merely stating that this treatment has no evidence base, which is a fact.all the purported literature are case reports at best. are you able to show us any level one evidence for this particular treatment?

          it's great you recovered from your illness but sometimes the best intentions aren't helpful as an illness is an extremely personal and emotional journey. have a look around at all the other suggestions thrown around this thread - how many of these are likely to be helpful and how many will cause inadvertent harm leading the OP to chase phantom diagnoses and expensive alternative treatment? what many people don't realise is unfiltered information can be both harmful as well as helpful.

        • Hen on 29/01/2017 - 14:58
          +1

          @xbai: with all due respect, I don't see the harm in W wombat sharing his/her experience. I, for one, appreciate reading of others successes and the possible contributors. I doubt that others suffering similar will blindly go out and replicate the treatment (I hope not anyway), but when the search for relief has been long and fruitless, it's certainly worth being made aware of, and possibly investigating further, possible alternatives (obviously under the supervision of qualified professionals).

        • The Wololo Wombat on 30/01/2017 - 11:31

          @xbai:
          @andg5thou:

          You asked for an example from literature, here it is:

          https://immed.org/Fatigue%20Illness/06.16.2012%20pdfs/Biomed…

          "Diagnosis and Treatment of Chronic Mycoplasmal Infections in
          Fibromyalgia and Chronic Fatigue Syndromes: Relationship to Gulf War Illness"

          This was the first hit when searching 'systemic mycoplasma antibiotics' in google scholar.

          Quote from the abstract:

          "mycoplasma-positive CFS/FMS patients respond to 6-week cycles of particular antibiotics:
          doxycycline, minocycline, ciprofloxacin, azithromycin and clarithromycin. Multiple cycles of these
          antibiotics plus nutritional support appear to be necessary for recovery."

          THIS is pretty much exactly my treatment.

          I encourage you to read this article, and others, before you use the word 'quack', or assert that 'it has no evidence base', without first looking at the evidence. I'm not advocating that people blindly start treatment, I'm advocating for people, with my symptoms, to test specifically for mycoplasma AND THEN go to a qualified Dr who has the training and expertise to deal with chronic illness.

        • May4th on 30/01/2017 - 13:40

          @The Wololo Wombat:
          re: critical appraisal of evidence
          http://researchguides.ebling.library.wisc.edu/c.php?g=293229…

        • insular on 30/01/2017 - 13:58

          @The Wololo Wombat: that's a pretty extreme course of antibiotics.

          i am however, interested in that german lab and what it is exactly that they do and why it is not available in australia.

        • The Wololo Wombat on 30/01/2017 - 13:58

          @xbai:
          What's your point here? This study was at least level II, probably level II on the scale you have provided (quantitative, randomised, controlled). Did you even read it?

          Will you only accept Level 1 evidence on a disease that is only just starting to get recognised in the last couple of decades? I'm not going to waste my time trying to find that for you, if (a systematic review) on the treatment does exist. It's clear that you've already made an opinion up and don't want to accept evidence to the contrary until it's been proven beyond reasonable doubt.

          "The recommended treatments for mycoplasmal blood infections require long-term antibiotic therapy,33 usually multiple 6-week cycles of doxycycline (200-300 mg/day), ciprofloxacin or Cipro (1,500 mg/day), azithromycin or Zithromax (500 mg/day) or clarithromycin or Biaxin (750-1,000 mg/day).34 Multiple cycles are required, because few patients recover after only a few cycles,26, 27 possibly because of the intracellular locations of mycoplasmas like M. fermentans and M.penetrans, and the slow-growing nature of these microorganisms. For example, 87 GWI patients that tested positive for mycoplasmal infections were treated with antibiotics. All patients relapsed after the first 6-week cycle of therapy, but after up to 6 cycles of therapy 69/87 patients recovered and returned to activeduty.26, 27 The clinical responses that are seen are not due to placebo effects, because administration of some antibiotics, such as penicillins, resulted in patients becoming more not less symptomatic, and they are not due to immunosuppressive effects that can occur with some of the recommended antibiotics. Interestingly, CFS, FMS and GWI patients that slowly recover after several cycles of antibiotics are generally less environmentally sensitive, suggesting that their immune systems may be returning to preillness
          states. If such patients had illnesses that were caused by psychological or psychiatric problems or solely by chemical exposures, they should not respond to the recommended antibiotics and slowly recover. In addition, if such treatments were just reducing autoimmune responses, then patients should relapse after the treatments are discontinued."

        • insular on 30/01/2017 - 14:03

          @The Wololo Wombat: gulf war syndrome/ilness has also been attributed to fluroquinolones given as a prophylactic for anthrax

        • The Wololo Wombat on 30/01/2017 - 14:27

          @insular: Interesting. I first contracted mycoplasma when in Nepal in 2009 while I was on another antibiotic (I'm pretty sure it was an antibiotic) to prevent malarial infection (recommended by my GP). I'm not sure what type of antibiotic it was. It wasn't until 2014 that it re-emerged in a significant way.

          Could it be that mycoplasma is opportunistic? Of course, I am speculating, but I appreciate this inference! I will do some research into this!

        • May4th on 30/01/2017 - 14:28

          @The Wololo Wombat:
          you googled a 20 year old study with scant peer review/appraisal and used it as evidence for the treatment - i think that says it all. there is more to evidence based medicine than googling a publication and use it as proof of efficacy

        • May4th on 30/01/2017 - 18:30

          @The Wololo Wombat: the anti-malarial antibiotic would be doxycycline, if you took it daily.

        • The Wololo Wombat on 30/01/2017 - 23:30

          @xbai: Fair point, what you you recommend as a treatment then? What other option might I have had?

  • astr0 on 25/01/2017 - 13:11

    Out of curiosity, have you had any dental implant work done? I've seen many of these symptoms as a result of titanium and other metal sensitivities post implant.

    • fivespice on 25/01/2017 - 13:39

      I have a big shiny filling in my upper left molar which I think was done in 2012 and I had a root canal done in 2013 on the same area. If dental work were the cause, is there is any recourse or treatment option now that its been there for some years?

      • astr0 on 25/01/2017 - 14:01

        If that shiny filling was amalgam, it consists of about 50% mercury which is associated with the symptoms you describe. This may or may not be contributing to your condition, but I would look at getting the amalgam removed by a professional (can be done relatively easily by someone who knows what they are doing).

        • decabyte on 25/01/2017 - 17:32
          +1

          Yeah, I don't think so. The FDA and Australian Dental Association both think its pretty safe. More importantly, sounds like OP has had their fair share of blood tests, I'm sure if there was elevated heavy metals that would have shown up.

          http://www.ada.org.au/Dental-Professionals/Policies/Dental-P…

          http://www.fda.gov/MedicalDevices/ProductsandMedicalProcedur…

          Generally the removal of an amalgam filling exposes a person to more mercury vapour than just leaving it be.
          FDA: "If your fillings are in good condition and there is no decay beneath the filling, FDA does not recommend that you have your amalgam fillings removed or replaced. Removing sound amalgam fillings results in unnecessary loss of healthy tooth structure, and exposes you to additional mercury vapor released during the removal process."

        • astr0 on 25/01/2017 - 18:23
          -1

          @pthurgood: Yeah, I tend to think the ADA and FDA has this one wrong. There is actually no safe exposure to mercury, especially when it's placed 10cm from your brain.

        • May4th on 25/01/2017 - 18:40
          -1

          @astr0:
          and i tend to think NASA has this climate thing wrong too

        • decabyte on 26/01/2017 - 22:11

          @astr0: I'm glad you think so. Your gut feeling is probably more substantial the 10's of thousands of hours of rigorous scientific research.

        • astr0 on 27/01/2017 - 07:32

          @pthurgood: Mercury toxicity from amalgam is well documented in scientific literature.

        • decabyte on 27/01/2017 - 09:59

          @astr0: Here is a review article from Toxicology International:

          The Dental Amalgam Toxicity Fear: A Myth or Actuality.

          Which concludes:
          "The current use of amalgam has not posed a health risk apart from allergic reactions in few patients. Clinical justifications have not been available for removing clinically satisfactory amalgam restorations, except in patients allergic to amalgam constituents. Mercury hypersensitivity is an immune response to very low levels of mercury. There is no evidence that mercury released from amalgams results in adverse health effects in the general population. If the recommended mercury hygiene procedures are followed, the risks of adverse health effects in the dental office could be minimized. Amalgam is safe and effective restorative material and its replacement by nonamalgam restorations is not indicated. Also a recent review by the American Dental Association Council on Scientific Affairs states that: “Studies continue to support the position that dental amalgam is a safe restorative option for both children and adults. When responding to safety concerns it is important to make the distinction between known and hypothetical risks.” "

          https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3388771/

  • klendestined on 25/01/2017 - 13:11

    Hi OP. Ceoliac here.

    Do your main symptoms include:

    -brain fog (difficulty thinking properly, feel like wool in the head);
    -fatigue (waking up feeling thrashed every day) (kind of similar to having a hangover/mild cold every day);

    Gastro symptoms may be:
    Pain / bloating / reflux

    Also, you might self medicate with higher than normal levels of coffee / energy drinks / smoking etc. This fatigue could be affecting you in funny ways.

    If so I'd get the gastro to do a colonoscopy (or alternate test for Ceoliac's). You might also try to get an endoscopy to check the enzyme levels in your stomach. I was getting reflux / bloating as the enzymes in my stomach were shot and I didn't have enough to break down food properly (cue removing lactose etc. from diet). Ceoliac's had also been damaging my intestine for years and I was anaemic and wasn't absorbing nutrients properly because of it. As part of context I had been suffering from fatigue for approximately 10 years before I got a diagnosis. Before that all I got was chronic fatigue / sinus infections etc. Got really lucky and found it when investigating another issue. A few years later and I'm right as rain.

    You said you felt better on a gluten free diet so that might be a good way to go. It's tough for the first year and you'll slip fairly regularly to begin with but it becomes just a part of life after a while.

    Other things said here though are spot on. Diet makes a huge difference. Make sure you're hydrated as well and it may help.

    Best of luck mate, I know how hard not having a diagnosis for a long time but keep investigating it as the payoff can be huge!

    • fivespice on 25/01/2017 - 13:41

      Thanks for your advice, will certainly take it on board. I had an endoscopy done. My doctor was garbage and I don't think enzyme levels were checked and Helicobactor Pylori also was not tested for.

      I am trying no gluten/dairy/refined sugar for a month. It's relatively easy for me to stick to this diet as I've done it quite regularly in the past. I mostly just eat salads.

      • [Deactivated] on 25/01/2017 - 19:35

        I meant to add that if you have suffered a bacterial or viral infection from an infectious disease there is a good chance you are now suffering the effects of depression.

        Very common for people who have had Lymes disease (and been cured) to have bad depression for years afterwards after the stress the body and mind have been through. All I'm saying is please don't rule it out.
        Good luck.

      • BrainSand on 25/01/2017 - 21:03

        going to go out on a limb here, i'm going to say that most of your symptoms sounds like you in the initial process of ketogenesis (exacerbated if diabetic) which comes with the ablation of carbohydrates from the diet.

        Brainfog, fatigue, gastrointestinal discomfort, visual blurring etc… Do the symptoms correlate to the times your were dieting? it would explain why the doctors aren't picking it up

  • [Deactivated] on 25/01/2017 - 13:33
    +2

    Have you been overseas in the last 18 months?
    My suspicions are: diabetes or depression.
    Have you seen a pyschologist?
    Indrogenous depression doesn't present strongly on the exterior.
    You need to see a GP and talk to them about anti depressants and seeing a psychologist or psychiatrist. I would go straight to psychiatrist so you can get medicated.
    Go to different GPs and tell them you would like to try Pristiq or Edronax.
    My wife is a psych and this is extremely common.

    • fivespice on 25/01/2017 - 13:42
      +2

      Yes I have many times. In my opinion, I do not believe I suffer from depression for the basic reason that I do not, and have never actually had problems with feeling down or depressed. I appreciate your input.

      • The Wololo Wombat on 25/01/2017 - 14:20

        Out of interest, where have you been overseas specifically? I'm curious whether we have been to the same place, given our similar symptoms.

        • fivespice on 25/01/2017 - 14:33

          2012 - Bunch of countries in Europe
          2013 - Singapore
          2014 - Hong Kong, Indonesia
          2015 - Hong Kong, Japan
          2016 - Hong Kong, Thailand, Indonesia, Japan

        • The Wololo Wombat on 25/01/2017 - 15:24
          +1

          @fivespice: I've been to all those too myself. I guess that's not narrowed down then haha.

      • [Deactivated] on 25/01/2017 - 15:25
        +1

        You don't have to feel down or depressed to have indrogenous depression.
        For your own sake i would ask a GP about this.

        This kind of depression is the kind where you don't feel sad, low or down, but you don't necessarily feel overly happy or excited about waking up in the morning…going through the motions so to speak.
        Have you been tested for diabetes?

        Back to depression…the main reason people don't realise they may need anti depressants is because their symptoms are mainly physical and not mental.
        My wife has had countless clients that were convinced they had some kind of virus or lynes disease etc..after 6 months of anti depressants they got their groove back. PLEASE consult someone about this because statistically it is extremely likely this is the cause considering ouve had so many tests and found nothing.
        At your age tbe body starts producing hormones diffetently in men. This is why men start going bald, lose sex drive etc…in many men (and women) their brain produces less endorphins and natural chemicals creating a severe imbalance.

      • Aap Ke Papa on 26/01/2017 - 10:22

        Have you had an abdomen ultrasound?

  • undercut on 25/01/2017 - 13:50
    -1

    Try TCM, it's particularly good for chronic diseases that have no particular Western Medicine diagnosis. Placebo or not, if it gets you feeling better that's all that matters.

    • BrainSand on 25/01/2017 - 21:05
      +1

      Negging you because that is terrible advice.

  • pembajak_sejati on 25/01/2017 - 13:59

    Hi,
    My father was diagnosed with Nasopharynx Cancer (NPC). NPC normally comes with EBV virus, i am not saying that you have NPC but you may want to do further check on NPC, there is always PET Scan that can scan whole body for cancer.

  • MessyG on 25/01/2017 - 14:24
    +15

    Disclosure: I'm a doctor but I'm not your doctor so my suggestions aren't medical advice, hopefully just some common sense.

    1. Completely agree with suggestions re general medicine specialist or rheumatologist referral - there are some general medicine physicians who have an interest in this area as it's rapidly evolving and it's important you see someone who is up to date with things.

    2. I do think you should see a gastroenterologist regardless. You have new bowel symptoms that may or may not be related to this, and they need to be checked out.

    3. Keep pushing the fact that you were fit and healthy before all this. Unfortunately a lot of doctors have been jaded by a certain subgroup whose fatigue etc is more due to lifestyle than a definable syndrome (post-viral or otherwise) and don't easily recognise the previously well person who is now unwell.

    4. Have a look at http://www.neurosymptoms.org/ just for some support because you're not alone and you're not imagining it - this site isn't intended to diagnose you, it's just for some reading.

    5. I think it would be helpful for every specialist you see and basically everyone you talk to, to get a basic depression and anxiety assessment done - your GP can do this. If the assessment raises an avenue for diagnosis then that's great, if it doesn't, then you can point to that if people suggest it's due to that.

    6. Avoid all advice on the Internet suggesting you take certain medications/herbs etc. Only your doctors know your history and your medical situation, it's dangerous to suggest medication without being privvy to that, or without being the person who sees you regularly and can monitor how you're going. If you want to try alternative therapy like TCM/acupuncture etc, just tell your GP because you'd be surprised at some of the drug interactions certain herbs have/complications of alternative therapy (i.e. stroke after neck manipulation).

    Keep persisting, I know it's exhausting but you're part of a wider group of people with an as-yet unnamed syndrome that the medical profession doesn't yet have a clear pathway for, so it's going to be a few brick walls before you find what works for you. Keep your mind open, and avoid the Lyme disease moneymaking machine.

  • worldwidehappiness on 25/01/2017 - 14:55
    +3

    My suggestion would be to get an Excel spreadsheet with a precise list of symptoms in a column and date list in the top horizontal row. Then tick off every day that the symptom show up. And prioritise the symptoms column from strong to mild. I say this because if you walk into a doctors office and say, "I started to experience bizarre and vague symptoms…" it might turn them off. But a clear list of printed symptoms might get their attention. Don't say "vague and bizarre". Be concrete and precise.

    Most doctors are mediocre, so keep searching for a good doctor and keep persisting. I had a friend that had lost a lot of weight and was doubled over in pain saying he felt he was dying. A hospital psychiatrist gave him psych meds which made him feel much worse, and he got angry when they snuck more psych meds into him. So they kicked him out of the hospital. Turns out he had addisons disease and nearly died because of their incompetence. Another example: My dad kept returning for sleeping tablets, and the doctor never bothered to point out that he was getting dangerously fat. He died at 56. Many other examples I won't mention.

    And don't self-diagnose. All my life, I told doctors "I keep getting colds or flus 4 or 5 times a year that last for weeks," and the fools just agreed and gave me the usual meds. At 52, I found out I had a preservative allergy! Claratyne stops it.

  • btpenterprises on 25/01/2017 - 15:05

    You're issues are likely caused by your mind. Not that they aren't real, they are but it's a matter of taking control of your mind. I'd be looking at stress & anxiety as a cause.

    • The Wololo Wombat on 25/01/2017 - 15:20

      You sound like my local GP, before I was diagnosed and cured by a parasite specialist.

      • [Deactivated] on 25/01/2017 - 15:27

        What parasite and what cure?

      • Protato on 25/01/2017 - 15:48
        +1

        By parasite specialist do you mean an infectious diseases doctor or an alternative medicine specialist ?

        • The Wololo Wombat on 25/01/2017 - 16:03

          To be honest, I called him that, because that's what he deals with and writes about. He's probably not qualified as a specalist in that area. You can see his medical credentials and history here: http://www.drgregemerson.com/about/

          Let me know what you think! I was really sceptical when I first met him. But hey, I'm cured.

        • The Wololo Wombat on 25/01/2017 - 16:05
          +1

          @DCO90:
          MBChB – Bachelor of Medicine and Surgery
          DipObs – Diploma of Obstetrics
          DipDHM – Diploma of Diving and Hyperbaric Medicine
          FACEM – Fellow of the Australasian College of Emergency Medicine
          FACNEM – Fellow of the Australian College of Nutritional and Environmental Medicine

        • Protato on 25/01/2017 - 17:01
          +1

          @DCO90: Seems like the kind of doctor that would help out OP. Good suggestion.

      • frewer on 29/01/2017 - 16:22

        I just read this thread today, and Im was going to suggest OP to see some one who is specialized in parasitic too. I remember watch this shows on youtube called Monster inside me ( good show ) and how they show all short of different parasite, it was eye opening

        Any way visit an infectious diseases doctor or parasite specialist.

    • MessyG on 25/01/2017 - 17:34
      +3

      Did you know in the 1980s doctors believed that HIV was punishment for being gay and that it was incurable as a result?

  • Deridas on 25/01/2017 - 15:06
    +1

    With EBV infection?

    Glandular Fever (infective mononucleosis)
    Chronic Fatigue Syndrome

    My recommendations are to use medicine that IS evidenced based (ie, most of the stuff that people with a MBBS or equivalent peddle).

  • lisamacoz on 25/01/2017 - 16:46

    Have you had your thyroid checked? It can lead to many different problems. Someone suggested an endocrinologist. That might be a good idea as they would be able to check your thyroid along with many other things through testing. Best of luck.

  • outlander on 25/01/2017 - 16:57
    +2

    I'm finding some of the responses above to be very enlightening. Others, the ones that aren't helpful and just seem to be trying to kick a person when they're down, less so.

    I think the problem you'll often face with a disorder of this kind, is that there is no objective measure for suffering, no commonly agreed on scientific units for pain. So, when someone complains of pain that doesn't accompany a clear physical injury, the person listening can only relate it to themselves and what they've experienced. If they don't want to empathize with you, they inevitably relate it to a time when they felt pain but managed to valiantly overcome it. Thus, they judge you as a weaker version of themselves, and resist considering the alternate theory, that you are really sick, and need their help.

  • syousef on 25/01/2017 - 17:07
    +2

    Anyone who tries to help you without knowing the full set of symptoms is deluding themselves.

    Anyone who tells you it is in your head without knowing the symptoms is an awful human being.

    You may simply have multiple issues.

  • ozbargain1000 on 25/01/2017 - 18:25
    -1

    This is absurd. Go and see a private GP (NOT MEDICARE) and get their advice.

    • MessyG on 25/01/2017 - 18:32
      +1

      The amount of training GP's have to go through to get a medicare provider number is very rigorous. Anyone can finish medical school, do their qualifying year and set up camp as a private gp. Proper GP's have to do specialty training now to qualify - and they all have different areas of interest so it's important to find the right one. The right, fully qualified one.

      • May4th on 25/01/2017 - 18:45
        +1

        actually not any more. all GPs now goes through specialty training to be accredited to practice independently. the reference is likely to a bulk billing GP vs a private charging (gap on top of medicare) GP. I'd caution against that - paying more doesn't mean better, there are many good GPs who bulk bill and mediocre ones who private bill and vice versa, you will need to do your own research to find someone who works for you.

        • MessyG on 25/01/2017 - 19:06
          +2

          There are older GP's out there who are practicing without having gone through the training programme. But I see your point re private vs bulk bill. OP needs to find whoever has an interest in this area, who cares how they choose to bill!

        • [Deactivated] on 25/01/2017 - 22:34
          -1

          @MissG:

          There are older GP's out there who are practicing without having gone through the training programme.

          Pretty much any GP older than ~45 has probably been 'grandfathered' into the FRACGP qualification, rather than undertaking any vocational training. Further, there's been so many different schemes/pathways to obtain the FRACGP qualification, I'd hardly call the programme rigorous.

          Is a 44 year-old who undertook vocational GP training better than a 45 year old who was grandfathered in? Who knows …

          My point is that your reasoning about GPs is quite absurd.

        • ozbargain1000 on 26/01/2017 - 00:35

          @MissG:

          History, exam and going through previous investigations will take at least an hour. Do you think a medicare bulk billing GP will be able to sustain their practice if they spend that long on a single patient? Take a look at the rebate rates for medicare on consultations and postulate their overheads - commission to the practice, indemnity, staff, bookkeeping.

        • MessyG on 26/01/2017 - 08:12

          @ozbargain1000: Depends on the GP, depends on what percentage the practice gives them, depends what their casemix, depends on if the GP is close to retiring, depends if the GP has a partner who earns a lot of money…I could go on.

Login or Join to leave a comment
Login Join