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Severe progressing brain symptoms - Lyme Disease?

Discussion in 'Lyme Disease and Co-Infections' started by SeanQHX1, Oct 6, 2018.

  1. SeanQHX1

    SeanQHX1

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    Glasgow, Scotland
    Hi everyone! I'm Sean, 24 and came here recently as I've been experiencing severe, progressing brain symptoms for 2 years. It started off as flu symptoms, accompanied by brain fog which hit me when I came back from a music festival. The "brain fog" isn't so much a feeling of foggyness that many people describe, but a feeling as if my brain is jammed up and something is blocking my thought process. I was just a week away from finishing my college course in sound engineering at the time. But after this sudden decline in mental abilities, I failed despite all my previous efforts. I've been out of work and on benefits ever since, while managing to still play in bands as my main hobby. The flu symptoms when it started faded within a week or so, but the brain fog has remained since and is slowly and steadily gotten worse over the years. Other symptoms started developing about 3 months later, all of which seem to be progressing like the brain fog.

    Here's a list of my symptoms in the order I took them:

    • Flu symptoms at the start
    • Persistant tiredness and fatigue
    • Brain Fog
    • Headaches (started as a dull pain over entire head region)
    • Heart palpitations (Happen at random, acompanied by sweating and chest/arm pains)
    • Insomnia (Occasional relapses lasting about 4-7 days each time)
    • Vision Issues (Tunnel vision, dimmed vision and slowed reaction time)
    • Joint stiffness
    • Low alcohol tolerence (Causes drowsiness)
    • Anhedonia
    • Bloated stomach area
    • Frequent peeing during the night
    • Dry and thirsty (regardless of water intake)
    • Muscle twitches
    • Heart PVCs and bigeminy
    • Chest pains (often stabbing or pulsating)
    • Dizziness
    • Ringing ears
    • Severe headache (Feels like a burning pain on the outside areas of my brain and neck)
    • Severe head pain when lying down or pressure is applied
    • Neck pain and stiffness
    • Numbness with pins and needles in hands and feet
    • Brief episodes of pain in arms and hands

    The brain fog, tiredness, anhedonia, vision problems and headaches are constant. There have been almost zero fluctuations in any of these symptoms and no activity, food, supplements or medication I have tried has made any difference to these symptoms. They simply get worse as time goes on.

    So far I have been given a diagnosis of "Post-Viral Syndrome", however by a doctor who appeared to be rather lazy and couldn't seem to diagnose anything. This diagnosis was made after a single appointment before I was even given any tests. I have since then changed doctors and got several blood tests as well as an MRI scan of my brain but all of them came back negative. I am currently waiting on word to see a neurologist.

    I am now beginning to suspect that my mystery illness might even be Lyme Disease after reading up on it and realising that not everyone gets the rash. Many of the symptoms of untreated Lyme as it progresses seem to match what I've been experiencing. And looking back, the festival I went to was heavily forested near the camping area, with many insects flying around, including mosquitoes. So it could be possible that I could have gotten bitten by a tick without knowing.

    Anyone have any thoughts on this? Would it be worth while getting checked for Lyme? Thanks!
     
    Sancar, Wayne, Starlight and 3 others like this.
  2. Mel9

    Mel9 Senior Member

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    Yes, it is probably well worth checking out an insect or tick vectored infection. Many of us have taken well over two years to get a diagnosis- I hope you can find out what is wrong quickly.
     
    the_phscale, Starlight and SeanQHX1 like this.
  3. Abha

    Abha Abha

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    Hi SeanQX1,
    I'm checking on Rickettsia/Lyme disease at present and I have been listening to these videos(youtube).You may find them useful....
    Research Shows Cannabidiol Is Effective Treatment For Lyme Disease..Dr Murakami is based in Hope/Canada.


    Lambert on Lyme Disease Dec 2018.
    Dr Jack Lambert is based in Dublin and is an expert on Lyme disease and its co-infections.
     
    L'engle and SeanQHX1 like this.
  4. percyval577

    percyval577 Senior Member

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    Your symptoms are familiar to me. What me helps, and obviously progredient coming from a state where my soul has had the size of a frogsoul is:
    - low manganese food
    - 2 times a day: 500mg Tyrosin, 250mg VitC, 250mg Tryptophan, 500mg GABA.
    - avoiding sugar, may be a bit fat.

    I´ve made threads on the issues. I got my Lyme impact when I was four. Hope it would help.
    (The last two points I only discovered recently.)
     
    Starlight, pattismith and SeanQHX1 like this.
  5. Silencio

    Silencio Senior Member

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    It could be ME/CFS without an infection. I spent years trying to treat suspected Lyme with zero success and I don’t think now that I ever had an infection. It’s good to keep an open mind going down any treatment route that you may never know the answers — just because testing for infections is bad, and often inconclusive. But a lot of people will tell you you “definitely have X”. So, keep an open mind so you can course correct if treatments aren’t working.
     
    jason30, SeanQHX1 and Moof like this.
  6. 5vforest

    5vforest

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    > It started off as flu symptoms, accompanied by brain fog which hit me when I came back from a music festival.

    I assume you don't remember any tick bites. But was there possible tick exposure at this festival? i.e. Was it outdoors? Where was it?

    Honestly, Lyme disease sounds like a definite possibility for you. If I were you, I'd try to see a specialist.

    Feel free to PM me if you have more questions, too.
     
  7. SeanQHX1

    SeanQHX1

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    Glasgow, Scotland
    Thanks guys, I will definitelly look more into Lyme Disease and see about getting tested for it.

    @Silencio I'm not too convinced that I have ME/CFS. I've never experienced PEM and I don't get any flair-ups or remissions. People with ME generally have fluctuating symptoms and speak of "good days and bad days", something I can't relate to as my condition is constant and slowly progressing. Even people with progressive ME still have fluctuations in their symptoms unlike myself. But I agree, I'll keep an open mind about treatments and not become too fixiated on having a condition that's curable.

    @5vforest I don't remember any tick bites. But as the festival, especially the camping area was heavily forrested and had a lot of flying insects including mosquitoes landing on people's arms, so possibly there were ticks carrying the disease. My arms wern't exactly covered up either. As I was partying with a crowd of people and listening to live music much of the time, It's likely I could have been unaware of a tick bite. I agree, Lyme seems to be a possibly going by the pattern and nature of my symptoms. I'll look into finding a specialist near where I live as soon as I can.
     
    the_phscale, Silencio and Starlight like this.
  8. 5vforest

    5vforest

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    Cool, good luck!
     
    SeanQHX1 likes this.
  9. taniaaust1

    taniaaust1 Senior Member

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    • [quote[ Heart palpitations (Happen at random, acompanied by sweating and chest/arm pains) [/quote]
    The palpitations, does it only happen when you are upright?

    (you have several POTS symptoms including eg increased thirst which then has you peeing a lot at night. If your palpitations only happen when upright or standing.. you should look into POTS as being "one" of the issues you may be getting now).
     
    SeanQHX1 likes this.
  10. SeanQHX1

    SeanQHX1

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    @taniaaust1 I'm not so sure I have POTS. I mostly get the palpitations while I'm in bed. Often I wake up during the night with my entire body sweating. The palpitations then begin shortly afterwards and last about a minute. I often get chest pain with them which sometimes spreads to my left arm. The first time it happened, I thought it was a heart attack and called an ambulance.
     
  11. taniaaust1

    taniaaust1 Senior Member

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    agree, that does not sound like you have POTS then. I just thought I would bring this up in case they were happening when you were mostly standing or upright.
     
    SeanQHX1 likes this.
  12. Nine lives

    Nine lives

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    One thing to rule out is the co-infection Babesia. I used to wake up overheated (I lost my ability to sweat for a while) and then I awoke with night sweats. Rapid heart rate at night also. These would persist for 30 minutes or so. You can search for my recent post on this. Only thing to note about Babesia testing is that there are a few strains, and my B. divergens is luckily one tested for on DNA Connexions. My doctor confirmed that he has seen other patients with what is characterized as a European strain in literature.

    Good luck on your search for an answer.
     
    the_phscale and SeanQHX1 like this.
  13. SeanQHX1

    SeanQHX1

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    @Nine lives I'll look more into this co-infection, this could also explain the bigeminy episodes I get during exercise. Although I never get unusually rapid heartbeats at any other time besides these sudden attacks I get where I feel like my heart is going to explode. And they only last for a minute or so with me, I can't begin to imagine what it's like having this for 30 minutes. Glad to hear you got to the bottom of it!
     
  14. jason30

    jason30 Senior Member

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    I wonder where you did the babesia testing? I am searching for some reliable testing for co-infections.
    I live in Europe.
     
  15. Nine lives

    Nine lives

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    I am in USA and my MD suggested test. I had bullseye rash a decade ago, so we were more interested in what was hanging around in my body rather than titers. I am not sure DNA Connexions serves Europe - you could email them through their website. Since this is urine test (PCR), there needs to be a deep tissue massage, prior to sample.

    A quick google search shows Armin Labs do blood PCR, which may be closest. Might be worth contacting them also. It seems they test for several strains of Babesia which is good.

    From reading/listening to podcasts from Dr James Schaller and Dr Richard Horowitz, Babesia is often missed and sadly hard to eradicate. Good luck!
     
    Sancar likes this.
  16. jason30

    jason30 Senior Member

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    Thanks! I have just contacted DNA Connexions with the question if they serve Europe as well.
    I have read several bad things about Armin Labs regarding Lyme testing so I pass that lab for now.
     
  17. jason30

    jason30 Senior Member

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    May I ask why low manganese food?
     
  18. SeanQHX1

    SeanQHX1

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    So far, any diet changes or suppliments I've tried have made zero difference to my symptoms. But If I do have Lyme, I'm guessing these could be worthwhile trying once I've had antibiotic treatment and the disease stops progressing?
     
    the_phscale likes this.
  19. percyval577

    percyval577 Senior Member

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    @jason30 For two reasons, one special one, and one generel one. Borrelia (which cause Lyme) contain huge amounts of manganese. When I discovered that low manganese helps me I thought to have borrelia, and the low manganese diet would starve them. And maybe I had, but I don´t think that there are anyones left after three years.
    Then manganese alters the gene expression of microglia, more specifically, of their production of nitric oxide. Nitric oxide is used also by nerves for the mechanism of learning and alters the different kind of nerves. It seems to me to be a slow change (so far).

    @SeanQHX1 I think low manganese can be understood as a specific antibiotic to borrelia (because they do contain so much of manganese, for some purpose). But it would not make sense to do both at a same time, low manganese and a traditional antibiotic, because traditional antibiotics enter the bacteria when they are dividing, and if there is low manganese araound they would not divide.
    So I too would guess that it would make sense to do one after another.
     
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  20. SeanQHX1

    SeanQHX1

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    Glasgow, Scotland
    @percyval577 Low manganese is worth a try untill I get a diagnosis. It's interesting you mention this because all the foods I've been taking are heavy in manganese including garlic, ginger, nut muesli, kidney beans, chickpeas, spinnach, wholegrain foods and green tea. I don't eat meat which probably doesn't help either. This might explain why my symptoms are steadily worsening.
     
    percyval577 likes this.

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