Brain symptoms still declining - Lyme test negative

[SeanQHX1]

Hi again everyone. I posted a thread a while ago suspecting that I had Lyme disease after experiencing severe, steadily progressing brain symptoms for over two years. But today I got my results from a Western Blot test which came back negative. I am now back to square one with this condition and my GP is completely stumped by my symptoms. Here again is the list of symptoms I've been getting in the order they started...

• Flu symptoms at the start
• Persistant tiredness and fatigue (still declining)
  
• Brain Fog (still declining)
  
• 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 (getting worse like the brain fog)
  
• 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 chronic headache
• Severe head pain (NOT a headache) when resting head 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
• Sudden, short fever attacks
• Hard swelling on side of head (Left temple area)
• Sudden sharp pain in head if pressure (caused by lying head down) is prolonged on opposite side of head

By far the worst symptom of all now is are these head pains I get when trying to put my head down on a pillow. On just about every part of my head that I lay on, the full weight of my head causes a quick build up of pain on the opposite side. For example, if my right temple area is taking all the head weight, the pain builds up on the left. And if I'm resting on my chin, the pain builds up on the front, top area of my head. As the pain builds up, cracking sounds can also be heard inside my skull. And if I let the pain build up on the one spot for too long, I now get a sudden sharp pain that feels like I've burst a blood vessel. My ears start ringing shortly after this and a stinging/burning pain starts spreading from the affected area. The first time this happened, I panicked and dialed the emergancy services thinking it was a hemorrhage. I now get on average 2-4 hours of sleep a night by taking co-codamols before bed and resting my face area on a pile of folded up scarfs. I'm not sure how much longer I can deal with problem as it is becoming worse like my other symptoms.

When I told my GP about the symptoms above, he talked about referring me to a pain clinic, although I'm pretty sure that won't treat the underlying problem. To me, it looks like there is some sort of swelling or fluid buildup in my brain. I am still waiting on word to see a neurologist which will hopefully be very soon and I can somewhat get to the bottom of it as I really can't take this much longer and need to get some sort of treatment fast.

I've spent my time researching all kinds of brain disorders, diseases and infections but so far this illness I have seems to be the only case of it's kind and no one else seems to be experiencing these particular symptoms. It's looking like something very rare.

Has anyone here experienced symptoms like this or any idea of what this illness could be, many thanks again!

 

[duncan]

Hope you don't think I'm nosy, but I am wondering what your band results were in your Western Blot results, ie, did you have ANY bands that came back positive?. That you obtained a WB suggests to me that you are ELISA positive - or did you bypass the ELISA?

 

[SeanQHX1]

Hope you don't think I'm nosy, but I am wondering what your band results were in your Western Blot results, ie, did you have ANY bands that came back positive?. That you obtained a WB suggests to me that you are ELISA positive - or did you bypass the ELISA?

I'm not exactly sure if it was a Western Blot, I might be wrong actually . I had a quick read on my GP's compluter which said "Lyme Serology" and mentioned something about a further confirmationary Western Blot. All I was told as that the results came back negative and there was no evidence of Borelliosis present.

 

[duncan]

Personally, I'd want to see the specifics of any Lyme test I might take, and that would include the ELISA, the Western Blot, the C6, etc. And if I am checking things that typically fall under tick-borne disease heading, I'd want to know about those as well, including Bartonella, which can present neuro symptoms much as Lyme can.

 

[xcell]

Do you have low CD 57 (natural killer cell) count?

 

[Mel9]

We have to learn to be assertive with our doctors.

Ask for a copy of every test result.

 

[Wolfcub]

Hi again everyone. I posted a thread a while ago suspecting that I had Lyme disease after experiencing severe, steadily progressing brain symptoms for over two years. But today I got my results from a Western Blot test which came back negative. I am now back to square one with this condition and my GP is completely stumped by my symptoms. Here again is the list of symptoms I've been getting in the order they started...

• Flu symptoms at the start
• Persistant tiredness and fatigue (still declining)
  
• Brain Fog (still declining)
  
• 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 (getting worse like the brain fog)
  
• 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 chronic headache
• Severe head pain (NOT a headache) when resting head 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
• Sudden, short fever attacks
• Hard swelling on side of head (Left temple area)
• Sudden sharp pain in head if pressure (caused by lying head down) is prolonged on opposite side of head

By far the worst symptom of all now is are these head pains I get when trying to put my head down on a pillow. On just about every part of my head that I lay on, the full weight of my head causes a quick build up of pain on the opposite side. For example, if my right temple area is taking all the head weight, the pain builds up on the left. And if I'm resting on my chin, the pain builds up on the front, top area of my head. As the pain builds up, cracking sounds can also be heard inside my skull. And if I let the pain build up on the one spot for too long, I now get a sudden sharp pain that feels like I've burst a blood vessel. My ears start ringing shortly after this and a stinging/burning pain starts spreading from the affected area. The first time this happened, I panicked and dialed the emergancy services thinking it was a hemorrhage. I now get on average 2-4 hours of sleep a night by taking co-codamols before bed and resting my face area on a pile of folded up scarfs. I'm not sure how much longer I can deal with problem as it is becoming worse like my other symptoms.

When I told my GP about the symptoms above, he talked about referring me to a pain clinic, although I'm pretty sure that won't treat the underlying problem. To me, it looks like there is some sort of swelling or fluid buildup in my brain. I am still waiting on word to see a neurologist which will hopefully be very soon and I can somewhat get to the bottom of it as I really can't take this much longer and need to get some sort of treatment fast.

I've spent my time researching all kinds of brain disorders, diseases and infections but so far this illness I have seems to be the only case of it's kind and no one else seems to be experiencing these particular symptoms. It's looking like something very rare.

Has anyone here experienced symptoms like this or any idea of what this illness could be, many thanks again!

Maybe ask your doctor to refer you to a neuro. and hopefully for a head CT scan?
It sounds rather like a peripheral neuropathy of some kind possibly...may involve one or a couple of nerve pathways (trigeminal nerve? or some other) But I am not a neurologist and my comment is merely a suggestion, and NOT of course any diagnosis.
A head CT may not discover a neuropathy but a neurologist might be able to identify it based on the trackways of the pain and symptoms.
Have you ever had shingles?

My symptoms (different to yours) don't fit in ANY classic profile for any disease/dysfunction/infection either, so you are not alone in that.

 

[SeanQHX1]

@duncan I agree, I'd better ask my doctor for a copy of my results to look over. After all you can't really take a GP's word for it with a condition like this and is much more to the results that it simply being positive or negative. And there could well be other bacteria present too. Going by my symptoms, it still looks to me like some sort of bacterial infection or parasite in my brain, causing parts of it to swell up and work more poorly as it progresses. The only other thing I can think of is that I did take a virus at the festival and it damaged my brain somehow but that seems very unlikely.

@Wolfcub I did get a CT scan of my head before I got these head pains but nothing showed up, I think I'd better get another one or an MRI. It could well be a nerve problem, although I'm not sure how that would explain the cracking sounds coming from the pain areas or those sudden bleeding pains I get when I lay for too long on the one spot. It might also be inflamed blood vessels, I don't think it's coming from the brain or meninges as I would have other much more serious symptoms. I'll see what the neurologist says and take it from there.

I've never had shingles or any illness known to cause a rash. This is a very puzzeling condition and the fact it is gradually getting worse leaves me worried about my future if I still have one.

 

[Moof]

@SeanQHX1, have you ever been assessed for craniocervical instability? This can cause all kinds of strange – and serious – symptoms, because the brain stem and the top of the spine is being compressed.

Diagnosis requires a standing MRI, with the neck in various stages of flexion (i.e., you need a specialist who knows how to do it). It's particularly prevalent in people who are hypermobile, but can occur without hypermobility, especially if you've ever had a neck injury or whiplash. If you haven't come across it before, it might be worth looking it up and seeing if any of the wide range of symptoms and patient experiences sound familiar?

 

[SeanQHX1]

@Moof I agree, my condition does share a lot of symptoms with CCI as well and it does feel like something is pressing on my brain areas causing a severe headache. My head doesn't feel heavy like a bowling ball though and coughing or sneezing, sitting or standing doesn't affect the pain. And I've never been in any accidents causing any major physical injuries. It does sound like a problem caused by fluid pressure or swelling in my head though and I'm intrigued to find out what that big swollen lump on the side of my head is.

 

[Moof]

The only other thing I've heard of that causes similar head/vision symptoms is temporal arteritis. My Nan had it years ago, and it caused a really painful, slightly swollen area on one side of her head. I've been struggling all day to remember what it was called, and it's finally popped in! A doctor should have picked up on it if it were that, though so I'm probably completely off-beam.

I do hope you get to the bottom of it – those sort of symptoms are really worrying, as well as bloody miserable to live with.

 

[SeanQHX1]

@Moof I did look up temporal arteritis before. The actual swollen area isn't painful and feels like a hard bony lump, but there is some pain when I touch some of the blood vessels near it on my temple area. The head pains I'm getting though all the time and when trying to sleep though are coming from directly underneath the skull, whereas I know temporal arteritis affects blood vessels in the scalp area.

I'm just hoping the neurologist I'm seeing can find out what's causing it. It's one thing not being able to sleep, but another not being able to even rest your head on anything.

 

[percyval577]

I am still improving, slowly and like an onion is built up, so it´s not easy to go through.
Next to my low manganese issue (which I do now already for three years), i just tried some metals with surprising effects. I made for myself waters from metal pieces though (pouring boiling water on it), and take a stip from it puting it into a drink, I don´t know if this is safe, it must be done very carefully, as it feels, kind of homeopathic.
at one time, say with supplements at one night: chromium (you might google "chromium" and "nucleus caudatus"), as a water say D2, and silver (?), say D3.
at another tiome, say with a supplement the second night: zinc (you might google zinc and thalamus), and as a water very homeopathic, say D6, whereas supplements contain a huge amount!
additonally I use at a thrid time aluminium, but there wouldn´t be any supplement to buy (you might google aluminum and spinal cord), say D4 - all these geometrical pronounced structures!

PS: i have ever been tested negative for Lyme, and only one year after i had started my anti-borrelia low manganese diet i suddenly have been tested positive, two times, with "possibly stage III Lyme" - however, you might google manganese and nitric oxide or microglia.

PPS: There have been reports somewhere on this forum about some succes with a silver supplement, and with chromium supplement. Per google you would find a recovery with chromium and lysine (which worked for me immediatly for three times very good), the guy who had recovered adressed it to metabolic changes.

 

[SeanQHX1]

@percyval577 I have been on a low manganese diet since you first mentioned it in my last thread. I haven't noticed any improvement so far and don't think my brain is deteriorating any less. But I'm glad to hear you've found something that's helping you slowly but surely improve.

I'm not quite sure if this is Lyme but it's still possible that it's some sort of biotoxin illness caused by a bacteria or parasite is in my brain. I also believe my autism could have partly triggered off this condition as the cognitive problems related to my autism are being largly exacerbated by this illness, like my social abilities and information processing which is getting slower and slower. This is actually what I'm finding most debilitating with the illness. This illness seems to be completely immune to any foods, suppliments or any lifestyle changes I've made so far and I'm not so sure now if anything natural or holistic is going to help. My best bet in the meantime is to see if the neurologist can find anything before I try anything else.

 

[percyval577]

Thank you @SeanQHX1 for the feedback, it´s nice/important to know. Also @Wishful tried once a low manganese diet and didn´t notice any effect. A pity of course, and I was quite confident that it would be a major part of the solution.
Now it might be at least a possibility for a borrelia/ebv subset (manganese - borrelia and arginine - ebstein-barr-virus, both contributing to microglia). Well and nevertheless, with that metals in mind my phantasy carries on and says, manganese might be only one possible cause for a disruption of inner brain structures, the thalamus and basal ganglia. I can literally tune/gauge my brain and get more and more a picure how to do it, hoping for a relative quick success. Also @tiredowl told me that chocolate would be recommandet for me/cfs, and it contains these metals (I myself add a zinc supplement though, and sometimes mayonaisse for slowly resorbed acetate, as an acid it would work at low "normal endogenous" amounts especially in the nucleus accumbens). (And interestingly, chocolate contains a chelator for manganese, because chocolate can contain also a lot of manganese.)

I remember now that I started with tics when I was a little child, so in my case it is a kind of Lyme. It was not a visible catastrophy but now I can assess, difficult enough. I was somehow a "social autist", also my information processing was so slow that I could not make music properly, and only the last years I sometimes could suddenly really play music. This dorian madness d-e-f-g-g#-a-b-c-d.