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MS without lesions (+a very specific symptom)?

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Posted 6/15/2015 11:37 PM (GMT 0)
Hi all!

I come from the lyme disease forum. I was pretty convinced that I have lyme, but never 100%. Long story short, I have mostly GI and neurological issues. I had 2MRis in the last year, both came back normal, but I have sensory issues, numbness in my arms and leg, weird daily headaches (more like pressure with difficulty thinking) and vision problems (among 100others). Does here somebody with similar issues who was diagnosed with MS? Any experience on that?

I have a very special symptom that no one has in the lyme community: occasionally before a "seizure" (increasing of the headache and irritation, sweat etc.) comes, I hear some cracking/clicking weird noises from the back of my head it is not moving dependent, it comes when I do nothing (not turn my head), and last only for a few seconds. As I googled it out, only patients with Chiari Malformation experienced this kind of sound, but this did not come up with my MRI results. Any experience on that?

Thank you!
Posted 6/16/2015 1:12 AM (GMT 0)
Did they order an MRI of your spine as well?
Posted 6/16/2015 9:46 AM (GMT 0)
Only for the first time, but it did not show any abnormalities.
Posted 6/16/2015 12:57 PM (GMT 0)
Google CCSVI. Your head pressure sounds similar to symptoms caused by this.
Posted 6/16/2015 2:20 PM (GMT 0)
Lyme, just like MS, is a tricky disease and unfortunately there are no simple amswers. Just because lesions are not picked up on the mri doesnt mean that there arent any . They could be so small that the mri is not strong enough to detect them. None the less, you can only go by what the professionals know and see. If youve been diagnosed with lyme id consult an llmd, if you already havent. Id also try and find a neurologist who specialzes in infectious diseases.
Posted 6/16/2015 8:32 PM (GMT 0)
Thank you for replies!

I do not think that this is CCSVI as I had a doppler ultrasound and the flow of the blood was normal in my arteries and veins.

Chris, if MR could be false negative then how can one diagnose MS in the absence of the lesions? However I am not convinced I have MS, as I have other symptoms as well not related to the brain. E.g.:heart palpitations, reflux, stomach inflammation, sometimes hot flashes, sweats, muscle twitching, cold extremities, and so on. But I am also not 100% sure in lyme, as my CD57 test was normal, and this kind of head pressure with this popping sound is not common in lyme at all.
Posted 6/17/2015 9:27 AM (GMT 0)
Hi hornet,
I had the symptom you describe. It was attributed to swelling of the meninges caused by Lyme disease (aseptic meningitis, not to be confused with viral or bacterial meningitis). This has been resolved for me with thorough and effective treatment for Lyme.

Please do not rely on tests for a Lyme diagnosis. The CD57 is not a definite test. Some Lyme Literate Doctors were using it to track improvement during treatment, but most are not using it. Your symptoms sound like you have a co-infection with the Lyme, which would make the other standard tests come up negative as your immune system would be suppressed and wouldn't produce the antibodies the tests are designed to detect. I hope you will find a Lyme Literate Doctor (one associated with the International Lyme and Associated Disease Society, ILADS), to diagnose you clinically.
Posted 6/17/2015 11:50 PM (GMT 0)
Thank you achievinggrace!

I also start to think that this is the case.

I can say that I was diagnosed by 3 different doctors (with chronic lyme), but these things that I wrote did not fit into the picture. And unfortunately I have a massive worsening lately (especially with the headaches, when a wave comes, sometimes I feel I will collapse and this is the end). The third doc described co-infections too (2types of borrelia, babesia, bartonella) with dark-field microscopy, but I do not know how reliable this is, as he is a retired physician and made a visit at home privately (I also does not have symptoms related special to babesia such as massive sweats, fevers).
I also does not understand this worsening now, as I am on the full cowden protocol at the third month (with banderol-samento and others). I should start to feel better, not worse isn't it?
Posted 6/18/2015 1:42 AM (GMT 0)
Hornet, you actually have the perfect confirmation that it is Lyme Disease and co-infections. The fact that you feel worse on treatment is the Jarisch-Herxheimer reaction. It shows that bacteria are being killed and your body is reacting to that.

The symptoms you describe could mean that you have late-stage neurological Lyme. As you progress with your treatment, you might find that other symptoms appear, consistent with other co-infections. My Babesia symptoms didn't really come out until I was very far along in my treatment.

Sounds like you have a good doctor there -- believe in him.

Take care.
Posted 6/18/2015 9:02 PM (GMT 0)
Achievinggrace, do you think that this is a herx for the cowden? It is confusing me, because I have been also there, where I am now (with these massive debilitating head symptoms): last year, after a 5weeks of oral tetracycline this decline started, and the worsening lasted 2more month (!) after ABX, and only stopped at this point for a massive iv vitamin treatment. The worsening was not constant, it came in waves (once, or twice a week, lasted 2-3days, and then a bit better feeling), but I did not experience anything during this ABX treatment.
Do you think it is possible that it was also a herx reaction (I think the present, and the last year's cause is the same)?

I called my doc today, but I was scheduled only for August for a consultation.

Could you write me what was the appropriate treatment for you to eliminate this symptoms? Was it anti-borrelia (e.g. ceftriaxone), anti-bartonella (e.g.rifampin), or anti-babesia (e.g. malaron)?

Sorry for the lot of questions, but it seems that you have worn these shoes already, and you have experience.
Posted 6/18/2015 10:38 PM (GMT 0)
I'm happy to answer you questions. I have sent you an email.
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