[Unsure81]

Hi everyone - I hope you don't mind me posting on here...I have jumped across from the Myasthenia Gravis Group as I am desperately trying to find some answers! Can any of you tell me if you can relate to any of my symptoms/story...or can give me any advice or information at all!
10 years ago when I was 23, I woke up with one sided facial weakness and eye droop, this progressed into a my arms and legs becoming easily fatigued/weak/shaky, difficulty with chest pressure/dizziness on standing/pale skin(deathly at times!)/weak voice...my fatigue is more a need to rest my body than sleep..though I could sleep quite easily!! lol All symptoms improve with rest and worsen with activity/heat/alcohol/stress and generally seem to fluctuate. I had spent almost 12 months prior to this being told I had Post Viral Fatigue due to fluctuations in general fatigue and generally feeling unwell/flu-like. I had lots of tests (bloods/Scans etc) and nothing showed up -I was dismissed and sent to a Doctor who dealt with strange cases - she started me on high level B12 injections and Vitamin&mineral supplements , natural diet etc and I did improve. I had 2 pregnancies and 2 beautiful children during this time where my symptoms were intermittent and, providing I got plenty of rest (which meant not doing anywhere near as much as most people my age), they were relatively controlled. (I did have Viral Meningitis during this period confirmed by lumbar puncture in case this has any bearing!) However, last February....it all came back with a vengeance! Again, I have been thoroughly tested (including EMG/SFEMG this time) and yet again, nothing has showed up - but I do have a Clinical Diagnosis for Myasthenia Gravis....not that it seems worth much as the Doctors are (understandably) reluctant to treat without tests to back up the diagnosis!

The reason I have found you all and am posting here is that I was bitten by a tick, 3 months before this recurred last February - I removed the tick from the back of my neck, I am not sure how long it had been there and I don't remember any rash or anyone noticing a rash? I have now discovered that infected ticks have been reported in the specific area where I was bitten...although it seemed to be Spotted Fever that the study was looking for rather than Lymes disease in that study!....but Lymes has been reported in the general area also!

I will just mention, in case there can be any connection - that before the onset of this all 10 years ago I was bitten by something (more bug like as it wasn't attached to my skin - it just left bites) in New York when I was working for an airline and I had to see medical staff and be passengered home as I felt quite unwell and my leg was swollen with it! I then spent around 12months being told I had "post viral fatigue" until the Myasthenia symptoms arrived!

I just wondered if any of you feel my symptoms and onset seem in any way consistent with Lymes?? I may just be clutching at straws but felt it was worth asking. I have checked my blood tests and don't appear to have had any of the blood tests mentioned for Lymes...though It seems they are not always conclusive. If it has any bearing I am in the UK.

Many thanks for taking the time to read this - I would be so grateful for any advice or information any of you might be able to give me x

[Breia Lee]

I'm coming to this thread late, but I did want to offer my opinion. I would suggest you get tested for lyme disease as soon as possible. Your symptoms could definitely be attributed to untreated lyme.

The way I like to explain it, the bacteria, or spirochetes (the form they take once they are in the body) 'play' around with our 'wiring', wreaking havoc in multiple systems. When it invades the brain and central nervous system, it becomes 'neuroborrelliosis'.

I went 36 years with untreated lyme before I was diagnosed 2 1/2 years ago. During that time, the spirochetes did a number on my heart, my lungs, my ears, my sinuses, my immune system, and finally, my brain and nervous system. My diagnoses include Sjogren's, Benign PVCs, Tinnitus, Asthma, Peripheral Neuropathy, Fibromyalgia, Irritable Bowel Syndrome, and now Ankylosing Spondylitis (there are other diagnoses, but you get the point).

Try to find a lyme literate physician if you can (LLMD). The tests are not good at picking up bacteria that have been hiding in your body for years...I took the Western Blot and only had one band show up (the medical profession says you have to have FIVE bands in order to be diagnosed with lyme), but my doctor knew better and immediately started treating me for it. I'm still not well, and it's been 2 1/2 years. There are also co-infections which often accompany lyme disease which could also be affecting you, like babesia and bartonella. Turns out I had babesia which didn't show up on the blood test, but which was nevertheless there and was responsible for the headaches, night sweats and severe, body shaking chills I had been experiencing.

I recommend reading 'Why Can't I Get Better?: Solving the Mystery of Lyme and Chronic Disease by Richard Horowitz'. I have it and am still reading it (as I am able--my attention span is now terrible). He is considered one of the leading authorities on lyme disease today.

Good luck, and I hope you find a path to restored health.

[Unsure81]

Hi Breia

Thank you so much for your lovely message!

I have been to my GP and they felt that Lyme is an interesting possibility - though my GP thought the tests were reliable given I would have to be late stages for Lyme to be my problem. The Lyme Action Association swiftly put me straight on that and said the tests are definitely NOT reliable!

My sample has been sent to the Rare Diseases Lab here in the UK and I am assured that I am having the most detailed tests.....which I assume is the Western Blot!

I am so confused, I have spent the last 2 years having all of the tests for Myasthenia, only to be told the tests are not reliable and despite my negative tests it is still possible.

However, despite my clinical diagnosis - they will not treat me fully because of the negative tests!

I am now very worried that I could be in the same boat with Lyme - I seem to have quite a few of the symptoms and credible exposure in endemic areas but if the tests are negative I will not really have a definitive answer??

I was hoping to either rule it in, or rule it out....but it seems that may not be the case....and my energy is so low as I get sicker that I am not sure I have the energy to chase this diagnosis - even though it does make alot of sense!!

Myasthenia would explain my facial droop and muscle fatigue/weakness - but Lyme would explain why I feel so ill, why I am pale, nauseous, need to lie down, motion sickness, headache, difficulty finding words...the list goes on!....and my persistent Costochondritis...and maybe even explain my "Bulky Salivary Glands" on my MRI!

But I am scared that without a test, there will be no treatment...or, at best, antibiotics in tablet form which seem pretty substandard when dealing with Lyme...especially the neurological symptoms from what I have read??

There are so many horror stories of people not being diagnosed...that I am scared this is another wild goose chase!! I am also scared by the amount of people who did get diagnosed but say the treatment didn't work for them...or sometimes weren't treated long enough!

Sorry to waffle on...as you can see, I send myself round in circles!! haha!!

Thanks again for your help and advice!
Eve.x

[Breia Lee]

Hi Eve! I'm sorry you are in such limbo. You would think, being the 21st century, that medicine would be more evolved than this, but the more you go to doctors for help, the more you realize how much they really don't know, and that alot of it is pure guesswork.

I'm also sorry that you haven't found a doctor who will just treat you based on your symptoms...the saying 'where there's smoke, there's fire' applies here. When I didn't meet the 'official' criteria for lyme disease, my doctor used my symptoms plus my remembrance of the EM rash (which occurred when I was 14 years old), to begin my treatment. He then used my CD57 number, which was predictably low, as well as my herxheimer reaction to the antibiotic treatment, to confirm the diagnosis he had made. I wish you could find a doctor who would do the same for you.

Originally Posted by Unsure81

Myasthenia would explain my facial droop and muscle fatigue/weakness - but Lyme would explain why I feel so ill, why I am pale, nauseous, need to lie down, motion sickness, headache, difficulty finding words...the list goes on!....and my persistent Costochondritis...and maybe even explain my "Bulky Salivary Glands" on my MRI!

Bell's Palsy is another possible explanation for the facial droop, and it is a common occurrence with neuroborrelliosis (late stage lyme).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2751922/

In the absence of your physicians treating you with antibiotics, you could begin treating yourself with a variety of herbs that have proven antibiotic/anti-inflammatory actions. Grapefruit seed extract is often suggested by llmds to be taken concurrently with antibiotics (my doctor recommended it). Samento and Banderol are two herbs that have been shown in a laboratory to kill lyme bacteria. Here's the article discussing it:

http://www.townsendletter.com/July2010/sapi0710.html

You can purchase it at Amazon, but there may be other places which sell it.

I do hope you can find a physician who will help you. Unfortunately, we need their cooperation in our quest to restore our health, and sometimes they are reluctant to join us in our journey. I saw many, many doctors over the 36 years I went undiagnosed, and no one took enough interest in me to help me get to the root cause of my illnesses until I met my current physician. Wishing you the best!