a litte help needed.... (apologies for the long post)

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by leasam, Oct 2, 2013.

  1. leasam

    leasam Member

    Hello all,
    I have been suffering with symptoms for over a year now and drs are being reluctant to give or tell me anything that helps me. I will give you a brief run through of my difficulties.

    I am 35, I WAS a fitness instructor. In March 2012 I lost my sense of smell, I was given antibiotics to clear up any sinus infection I had previously and a nasal spray.
    6 weeks later I returned to gp with the same symptoms and given another nasal spray.
    By September my smell had returned but was very distorted, food, anything that was perfumed, car fumes all smelt really quite bad, rotten, mouldy and chemical.
    things got so bad that I couldn't eat, couldn't be around anything that involved food, perfumes and exhaust fumes.
    I returned to my gp and was sent to see ENT drs, by this time I had become exhausted had to reduce the hours I was teaching, began losing weight, became very anxious as I didn't have a clue what was going on and it seemed nobody else did either.
    On the evening of November 19th I experienced seizure like episodes, I actually thought at one point I was having a stroke as my face had gone numb on one side, I couldn't feel my hands and my speech became slurred. I couldn't move well at all, my vision became blurry and I felt like I had had a few too many to drink.
    I went to A&E the next day as the symptoms hadn't resolved. I had a mri scan which came back with nothing.
    From that day on my life has turned upside down.
    I lost 2 stone in around 6 months, I have problems with vision, balance, memory, cognitive function, taste and smell, bladder, bowels, temperature regulation, swallowing, speech, joint and muscle stiffness and weakness, extreme fatigue, almost fainting when I stand up or stay up right for too long headaches and prob some other things I can't remember!
    I have seen 2 neurologists 1 told me I am converting stress and the other that I have a migraine disorder and was stuck in the aura phase, he stated in his report that my symptoms resemble MS but as I had a clear mri scan he was going to diagnose migraine.
    I was put on amitriptyline and take 100mg a night and as yet have seen NO improvement only a very dry mouth!!
    My own gp seems baffled by the whole episode as nothing is easing up or changing.
    I asked him last week if he thought it could be M.E and he said that I didn't have a sore throat or swollen lymph nodes so no it couldn't be that and requested that I have an ecg as my blood pressure has been all over the place since this started and on exam my heart was racing. He is also testing my thyroid.
    I came home and did a little googling about smell and taste and M.E and came across a number of forums with many posts about people's smell and taste being distorted.
    I feel like the medical profession has kind of given up trying to sort it out. I've had to battle to get a dietician referral so I can get some food supplements, I am now on pro cal and fortijuce supplements and have gained half a stone taking my weight up to around 8 stone.
    I am so tired of it all, my social life is non existent as I struggle so much with smells, noise, constant dizziness and sickness and fatigue.
    Any advice, suggestions will be appreciated as I am desperate for answers....

    Thanks for reading x
  2. Soul*

    Soul* Active Member

    Hi Leasam,

    As far as I know you don't have to have a sore throat or swollen lymph nodes to have ME. I hadn't at the time of diagnose though I have had later on in between once or twice.

    I also have the sensitivity to chemical smells and all kinds of other smells etc. If I step out and my upstairs neighbour has her laundry hanging out I get sick. When my other neighbour lights a sigaret outside even though I am inside with the window barely open I get sick to, only after that I start to smell it and only after that I start hearing my neighbour move around and such. I am sensitive to a lot of smells.

    What helps me is to put some pure peppermint oil under my nose to block out all the outside signals. Be careful with it though, you have to get used to it. Cools the skin, makes it tingle, but will also make the eyes tear if it comes to close. You could look into essential oils to see if there is a scent that is nice for you. If you make sure it is absolutely pure oil it shouldn't do any harm.

    I always carry it on me especially when being around other people and put a drop on my finger and rub it under my nose preferable before I enter a room so it doesn't attract too much attention as the scent is strong and I don't want others to feel bad about me not being able to deal with their body odours :p

    Hope you find out what it is you have to deal with and what will be the best way for you to deal with it.
  3. Nanie46

    Nanie46 Moderator

    Leasam,

    I am so sorry that you are suffering so much.

    It is very possible that your symptoms have an infectious cause which is chronic now.

    Read this info and watch the video and documentary below to see if this sounds like you.

    Many people have chronic tick-borne infections (Lyme disease, Bartonella, Babesia, Ehrlichia, and others) that do not show up on standard lab tests and Dr's really have no clue about how to recognize, diagnose or treat properly.

    Many people (past and present) on this forum found out they had Lyme and other chronic infections.



    Basic info: www.lymepa.org/Basics2007v1.2Rev.pdf

    www.ilads.org/lyme_disease/about_lyme.html

    www.lymedisease.org

    http://www.prohealth.com/library/showarticle.cfm?libid=18052


    "Advanced Topics in Lyme Disease" (Testing, Diagnosis, Symptom List, Treatment, Common Co-infections):
    www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Free online documentary film about the unrecognized Lyme disease epidemic, "Under Our Skin":
    www.hulu.com/watch/268761


    Tick-Borne Disease Alliance:
    www.tbdalliance.org


    Lyme Disease Association:
    www.lymediseaseassociation.org


    Labs: www.igenex.com (Lyme western blot IgG and IgM, PCR, Co-infection panels)
    www.advanced-lab.com/faq.php (New Lyme culture test)


    "Lyme Disease: Two Standards of Care":

    www.ilads.org/lyme_research/lyme_articles4.html


    Lyme Disease Message Boards (for Medical Questions, Seeking a Doctor, etc) Click on Flash Discussion and sign up for free:
    www.lymenet.org


    Chronicle full episode, "Ticked" (20 min):
    www.youtube.com/watch?v=s3_JwDPqGAg
    Abdulrahman likes this.
  4. Realette

    Realette Member

    I think you probably have M.E. sorry to say. Try to get as much support from the online groups and it is good you are clear on the types of symptoms. It took me years to even describe them. The med profession can really burn us out. Can you consider a homeopath or naturopath ?
  5. IanH

    IanH Active Member

    Leasam
    You have the classic symptoms of MCS aka Idiopathic Environmental Intolerance. For many this is actually a form of ME. The most significant research has been done done in Italy by Prof. Chiara deLuca and he has uncovered some of the immunological variables in this illness. Unfortunately when people like you present to their doctor with these symptoms it does baffle them and the first thing they think of is "psychological" - sadly. Some do know that it is a sub-illness of ME and will diagnose it as ME/CFS. Some research has been done in Australia in conjunction with ME as many of the patients have MCS. My daughter is involved in this research. She came down with this at age 35.

    Despite what some doctors think this is a true immunological illness, not psychological at all. If you read Dr deLuca's papers it will give a sense of the reality of the illness. Just google "Chiara deLuca MCS" and visit the website MCS America for a wider set of information. You might also like to read up on the theory of Prof. Martin Pall on the nitrosative pathways involved in MCS.

    You can reduce its grip on you.

    We have several patients with ME and quite severe MCS at the clinic where I work as a Psychologist, my job is to counsel patients in how to manage their chronic illness. This is the advice and treatment we give for MCS:

    Most importantly learn the chemicals that trigger symptoms, eg. many detergents (find a detergent from the environmentally friendly, sensitive group); do not use cleaners in your home and avoid all "antibacterials". Avoid the use bleach as a cleaner. Use baking soda and a mild detergent or even a shampoo to clean; do not wear perfumes or deodorants, avoid the hairdressers, avoid people who wear perfumes or at least have limited contact; avoid wood smoke or burning plastics, get someone else to fill your car with fuel; be cautious about introducing new packaging, from anything outside into your home; never use pesticides of ANY kind and that includes plant defoliants. If you can get a gaseous filtering mask to wear if you have to do chemically related jobs. Avoid using paint, both enamel or acrylic.

    Secondly work on your diet and appetite. Firstly get some high quality Bovine Colostrum and take 3grams twice daily. combine with a probiotic mixture, ideally a 10 probiotic of more than 2 billion units. Take twice daily. Take vitamin D3 (starting with 10,000 IU daily for three weeks then drop it to 5000IU daily permanently). Take magnesium 200mg twice daily building up to 400mg twice daily after one month (in form of magnesium citrate, glycinate chelate, or threonate or a mixture). Take zinc 25 mg daily. Take vitamin K2 mixed form. Take vitamin B12 sublingual 1mg twice daily. If you cannot tolerate taking any of these then don't take them. Most people with MCS find most of these tolerable but the K2 can sometimes cause a problem. We have had no one who cannot tolerate the colostrum and probiotics.

    These recommendations are made as a basis for reducing biochemical stress and improving mitochondrial function. There are many other nutrients that help but start with this basis.

    You will need to be careful about the food you eat. You will be hypersensitive to preservatives, particularly sulphites and nitrites. These are toxins to anyone but your body cannot clear them properly so avoid them. Also avoid artificial sweeteners, particularly aspartame. If you want sweeteners, use stevia. Milk seems to be Ok for most but watch the milk fats they can irritate the gall bladder causing increased polyps to form, we have seen this with a few MCS patients. Try to get as many organic vegetables as possible. Keep you r sugar intake low. These food recommendations are made to reduce the sources of oxidative and nitrosative stress.

    Any more questions, just ask me. I am happy to assist.
  6. leasam

    leasam Member

    Thank you for your replies.
    I have heard suggestions of Lyme disease before, I will have to take a look at the links at a later date.

    It's only since I've been on the amitriptyline that I've really started to try and unravel it all. At first I felt like I had been landed on another planet and didn't have a clue what was going on, what type of pain I was getting, what type of dizziness and nausea, the vision problems etc, the medication has done a good job of reducing my anxiety. I know I have looked hysterical to drs and neurologists but now I feel like I can express what's going on a lot better.

    I will look into IEI (again at a later date, I'm so tired atm) to be honest I had come across it in the last few days and wondered if it was possible that's what was happening.

    I also have been contemplating acupuncture or hypnotherapy as atm I feel like I am shovelling tablets down for no reason at all.
  7. mbofov

    mbofov Active Member

    leasam - what antibiotic did you take in March 2012? If it was in the fluoroquinolone family (like Cipro, Levaquin and a couple of others), some of your symptoms could be caused by that. These ABs can cause horrendous damage but they're prescribed very commonly.

    Also, what nasal spray were you given? The corticosteroids (like Flonase) can damage the sense of smell and might have caused your smell problems.

    If you took these drugs, then I think it would be good to do more research on them and their "side effects". It's just very interesting that all your problems started after you took an antibiotic and used a nasal spray.

    Mary
  8. leasam

    leasam Member

    Hi,
    I forgot to add to the original post that I had a quite bad sinus infection in Feb 2012 I believed my smell had just not come back because of that, I then had a minor head injury at the end of May 2012, we then believed that I had damaged some olfactory process because of that.

    I then stopped smoking in the hope I would be able to smell again but all that happened was i started with the offensive smell and taste.

    I had a nasal endoscopy which I truly thought would show I had polyps, didn't show anything.

    I really am at a loss as to what is going on. My Dr was convinced that once the smell and taste issue had been resolved everything else would clear up on its own. However this is proving not to be the case as no one knows how to do it.....