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

- kywst on 29/01/2017 - 10:21
  
  The thread basically starts with "I've been given a diagnosis but I'm special so it must be some rare house MD sh!t they missed. House me OzB."
  
  Wake up people … Chances are you're not special and lifestyle and diet play an increasingly important role as you get older.
  - insular on 29/01/2017 - 12:22
    
    when you get sick some day and the doctors give you the flick, come back here and let us all know.
    - kywst on 29/01/2017 - 12:45
      
      If they've given me "the flick" and I've seen a few I will accept that medical science is yet unable to effectively diagnose or detect my ailment. How would letting you know change the situation? Hug circles?
    - insular on 29/01/2017 - 13:57
      
      -1
      
      @kywst: missed my point. let me know so i can ridicule you too.
      
      medical science cannot always effectively diagnose every situation but there is indeed a lot that can be done. most GPs and sometimes specialists just don't want to do it/acknowledge it because it's too much work (esp. in the public system).
      
      Chances are you're not special and lifestyle and diet play an increasingly important role as you get older.
      
      he's not old. and a poor diet for just a few years wouldn't cause most of the issues he has.
    - kywst on 29/01/2017 - 14:05
      
      -1
      
      @insular:
      
      missed my point. let me know so i can ridicule you too.
      
      If I let you know at some point in the future I only ask that you keep your promise; for being dismissive of my egotistical crap will benefit the both of us.
    - insular on 29/01/2017 - 15:40
      
      -3
      
      @kywst: it won't benefit anyone (except i do get a kick out of trolling idiots on the interweb).
      
      same applies to calls for the thread to be deleted.
      
      GPs are getting more and more clueless. esp. with the younger generation relying on dr. google themselves (i had one recently open a textbook to look up a very common condition in front of me).
      
      threads like this are useful as long as you don't take it as gospel. it gives more ideas to bring into conversations with medical professionals that otherwise spend most of their time writing scripts for the elderly and opioid abusers.
    - kywst on 29/01/2017 - 16:01
      
      @insular: You, sir, are the epitome of a hugbox jerker. I'll just go hide in the real world for a bit on account of not requiring bubble wrap.
    - insular on 29/01/2017 - 16:20
      
      @kywst: actually, no.
      
      not sure if you lack comprehension skills or are just stupid.
      
      you can apply that kind of terminology to vegans though.
    - kywst on 29/01/2017 - 17:00
      
      @insular: but you can meet all your nutritional requirements on a diet of only nuts, grains, vegetables and fruits. Only a moron would eat meat which is verified 100% by the bible. God basically says that circle jerking makes baby Jesus cry. Good day, sir.
    - insular on 29/01/2017 - 21:52
      
      @kywst: a vegan! flushed him out like a rabbit (which i will now make a stew out of).
      
      go back to your vegan circle jerk (same thing).
      
      btw. never read the bible and never will.
shanghaistar on 29/01/2017 - 00:05

Hi OP I have PMd you as it sounds like we have a lot in common with the health issue hope to hear back from you good luck.
lostn on 29/01/2017 - 16:19

I don't have much that can help you, but I advise against alternative medicine. It's bunk.

You haven't gone into much detail about your symptoms so it's hard to compare with what I may have experienced before. But if the doctors can't figure out what you have, I doubt a bunch of unqualified people on a bargain site will fare any better.

I'd try some more different doctors.

-Has anybody experienced something like this before and did you/they manage to get treatment?

Hard to say because you've been very vague.

-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?

It's a bad idea. They only work as a placebo, but placebo only works if you aren't aware of it.
rabid_monkey on 30/01/2017 - 09:28

Have you thought about trying a High Fat Low Carb (HFLC) or Ketogenic (keto) diet? There is some evidence (unfortunately mostly anecdotal but slowly more studies are being undertaken) that these kind of diets can address a many of your symptoms. Hit up r/keto and search for your symptoms.
On a similar line of thought, as someone else mentioned , it could also be related to a Celiac type disorder, which is managed by removing wheat (and therefore many carbs) from your diet.
Good luck.
bargainhulk on 30/01/2017 - 16:49

Hello, I can hear that you are having unpleasant situation. My second son also had many alergy symptoms and visited GP, specialists many times. However we couldn't find reasons.
I started to read books and research about it, and we tried to heal with feeding organic products and never visited fast food restaurants. We also make sure he exercises regulary and stay away from any chemicals, We changed all shampoo/soap to be very organic as possible. Also used eco dish washer/laundry products.
After all these his symptoms got disappeared dramatically.
insular on 30/01/2017 - 19:39

found this

http://www.imreference.com/neurology/n-ataxia

might be useful to take a look and discuss with your GP
[Deactivated] on 30/01/2017 - 20:41

i'm going to say stress. Try whatever you need to de-stress dude
Eddie8 on 31/01/2017 - 10:05

FWIW I had glandular fever back in my uni days. It took me over a year to get back to almost normal energy levels. I've heard people to have quite long lasting effects from glandular fever…
earthgurl on 31/01/2017 - 10:41

I think I read that you are from Perth? if you are in Melbourne, would have invited you to a health talk this Friday about Detox and why is it important. The speaker herself previously had some health issue (for a few years) and the doctors cannot tell whats wrong. She had to go through the elimination diet for 6 months. She had to be careful of what she ate. After that, she decided to try on nutritional supplements and slowly she gained back her health and now she is able to eat everything.

there are 6 aspects of Health.
1. Balanced diet - Are you taking enough fruits and vegetables?
2. Exercise - Do you exercise? It is recommended to exercise at least 3 times a week, more than 30 mins doing aerobics/cardio
3. Adequate high quality sleep - recommended to have a good sleep of 7 hours, preferably before 11pm as after that time is when your liver is going through detox.
4. Detoxification
5. Stress Management - Are you easily stressed out?
6. high quality nutritional supplements - how do you choose a high quality product.

All these are important and inter-related.

The difference between Western Medicine, TCM and Nutritional Supplement
Western Medicine - is fast acting, treats the symptoms and accurate. Cons - It has side effect and does not actually cure the roots.
TCM - uses holistic approach, treat the roots. However, unable to estimate the accurate dosage, slow, the active ingredients are not clear, risk of contamination in the raw ingredients.
Nutritional supplements - combines the best of both Western medicine and TCM, accuracy from Western medicine technology and uses holistic approach.

I am interested in nutrition and supplement and have for the past 6 months been working with a group of health professionals and medical researchers to help others. Without knowing the exact symptoms, am unable to get advise further
tsuyoku on 31/01/2017 - 12:27

Hey fivespice, please check your inbox. PMed you!
icejester on 31/01/2017 - 16:49

What's your actual symptoms?
Vanit on 01/02/2017 - 10:26

I went through a very similar situation where I had a sudden onset of breathing difficulties and I couldn't for the life of me get a diagnosis. It didn't help that I'm an asthmatic so doctors would regularly fob it off to my asthma even though it felt very different and my puffers had no effect. At the same time I started to feel extremely fatigued and had this weird pain in the middle of my back. Had various scans, found absolutely nothing. Eventually the symptoms mostly subsided and I gave up trying to get answers, so now I'm just moving on with my life.

I know exactly how you're feeling and how hopeless it must feel that no doctors will take ownership of your symptoms and try get to the bottom of it. Unfortunately I don't have any solutions for you. :(
- ssx on 01/02/2017 - 14:15
  
  I know someone who had a similar experience and it turned out to be severe sleep apnoea. Might be worth looking into that?
[Deactivated] on 01/02/2017 - 18:35

I think you should take care of your diet and try to eat healthily. As far as gastrointestinal problems are considered, then this is the main cause of all diseases. So, you should follow a healthy routine and take a balanced diet to get rid of it.
- insular on 02/02/2017 - 16:27
  
  As far as gastrointestinal problems are considered, then this is the main cause of all diseases
  
  well, no.
fivespice on 26/05/2017 - 13:55

Hi, just an update:

After my month or so long episode I started to feel better but still some lingering symptoms like before, but some new lingering symptoms too (floaters in eyes).

I paid for a bunch of tests to be done by a Lyme-disease literate doctor here in Australia. The test came back saying that the Western Blot IgM was detected and the comments noted the bands were p41, OspC and Osp17. The lab that did this test was the Australian Rickettsial Reference Laboratory Foundation in Geelong Australia.

I asked the doctor what I should do, he prescribed me with 150mg of Minocycline per day, Secnidazole 400mg once per month, Tramadol Hydrocholoride 100mg twice daily, Olive leaf/cats claw/ baical skullcap/eleuth mix and some probiotics. I asked him how long to take this for, he literally said "forever". He had no real advice and I don't know what to do from this point.

I don't even know whether I have Lyme or what to do, but the doc is sure I have Lyme but says its not recognised based on Australian standards due to political issues etc. I have no idea how to move forward as I don't want symptoms getting worse and worse over time.
- ssx on 26/05/2017 - 14:04
  
  I'm surprised you came back to give us an update :)
  
  Have you had any luck finding a specialist/consultant physician? A lot of doctors won't admit that they have reached the limits of their knowledge - it's up to you to keep researching and fighting to find a doctor.
  
  I can't remember where you are from (WA?)…but I would be looking for someone specialising in Chronic Illness.
  - fivespice on 26/05/2017 - 14:09
    
    Hi, I'd never let the OzBargain community down :)
    
    I have seen a GP who deals with Lyme and chronic issues and he arranged for all of these tests to be undertaken and sent to Sydney, Geelong and Germany (expensive).
    
    My issue with him is, he seems to mostly treat people who have debilitating symptoms. I'm in a weird place where my condition isn't HORRIBLE, but I certainly don't want to go through an episode ever again nor do I want things to get any worse over time.
    
    Yes I am in Perth.
    - Deridas on 26/05/2017 - 14:28
      
      Just double checking, were the doctors absolutely sure it's not glandular fever?
    - ssx on 26/05/2017 - 14:34
      
      You'd think he would be concerned about preventing debilitation.
      
      Keep a copy of your results and keep looking for a complementing GP. I have three GPs who manage me :\
    - mskeggs on 26/05/2017 - 14:43
      
      +1
      
      I think there is a risk of prejudicing your diagnosis if you seek out specialists in what you think you might have.
      It doesn't seem like you have a lot of faith in the diagnosis thus far, and the medicines you have listed don't look to me like suitable treatments for a person with mild or minor symptoms. But I am not a clinician.
      
      I also don't want to be Dr Google, but cursory googling suggests the results of the blood test were far from conclusive (https://www.cdc.gov/lyme/diagnosistesting/labtest/twostep/we…)
      "A positive IgM immunoblot is only meaningful during the first 4 weeks of illness
      If you’ve been ill for longer than 4-6 weeks and the IgG immunoblot test is negative, it is unlikely that you have Lyme disease, even if the IgM immunoblot is positive."
      
      Based on this, I wouldn't be seeking treatment for Lyme disease as priority, especially given its extreme rarity in AU.
      
      I think you need to either start again with a fresh slate and a new doctor to treat the minor symptoms you are currently experiencing (which may or may not be related to past attacks) or wait until you have a repeat attack and treat that.
      
      It is different when there is a very clear diagnosis and taking prophylactic medicines could be useful. In your case where the original issue seems to still be a mystery, I would hesitate to take powerful medicines on an ongoing basis without a second opinion.
    - fivespice on 26/05/2017 - 15:00
      
      @ssx:
      
      May I ask what your condition/issues are? You may have mentioned earlier but the thread is quite long.
    - fivespice on 26/05/2017 - 15:02
      
      @mskeggs:
      
      I understand your point and I appreciate your advice. I have looked to be treated when I'm undergoing an attack and never really received any real treatment from GP's and specialists other than the suggestion of anti-depressants which I'm really not interested in.
      
      I'm not 100% sure that I have Lyme or anything like that at this point, but that particular GP seems to think so. I get that apparently there's no Lyme in Australia, but that means nothing to me since I have traveled quite a good amount in the last 4 years.
    - fivespice on 26/05/2017 - 15:09
      
      @Deridas: I mean the EBV tests have come up positive but the symptoms don't really coincide I think? Some GP's have thought it could be EBV but others thought not.
    - mskeggs on 26/05/2017 - 15:11
      
      +1
      
      @fivespice:
      I guess my concern is most with the medication load you are on.
      The side effects from these powerful medicines will be producing impacts on your body.
      I'm no medical expert, but I urge you to seek a second opinion.
[Deactivated] on 18/07/2017 - 21:56

I have previously posted this but to remind you..

http://ww2.health.wa.gov.au/Articles/J_M/Mosquito-borne-dise…

With regards to tests I would suggest testing for Ross-River Fever, Murray Valley Encephalitis, Kunjin Disease and any of the other Mosquito Borne Disease from the above link that you may have been exposed to overseas and i would also suggest you ask for a rheumatological screen ie ESR, ANA, ANCA, anti ENA.
Your GP sound like they are happy to organise tests for you which is great, but a General Physician (ie FRACP) may be useful to consult as well.
rompastompa on 01/11/2018 - 13:56

How are you feeling? Diagnosed and properly medicated now?

You seem to be travelling a lot again, so must be all cleared up.

Ongoing Symptoms Without Diagnosis

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