hi, Jules. Stop me if you're heard these :)
test bands: what about the one microbe that's most often associated with Lyme? babesiosis... but then, what can you do about it?
sometimes migraines get cured by Mg
Mg as per muscles + nerves: Ca rushes in to a nerve or muscle cell and Mg rushes out, creating pulse conduction. Similarly Na and K are sort of like opposites. How does that relate? I don't know. But do you have any unusual dietary habits, like vegetarian? High sugar diet (which causes mineral excretion)?
pineal cyst: I think often times a person can somehow just "know" what's wrong with them. That's why I asked about your intuitive perception. Otherwise I know very little about it. What is the width x length of yours?
How about milk or legume allergy? If you have gut permeability because of that, then lots of other molecules can cross the barrier and then create problems.
lecithin granules might have some minor benefit. Sort of nourishment for the nerve coverings.
Aquatic ape theory would infer that ancient humans absorbed Mg through the skin from sea water. IOW, Mg is a big requirement which most people are truly short of in modern days.
stroke: well, what could dispose someone of your age to a lacunar infarction? Could you have a Patent Foramen Ovale? That's all I can think of. Ir do you have varicose veins, indicating hypercoagulability?
Also re stroke: damage would get better or stay the same. Does yours get worse? That could argue against *a* stroke, or in favor of repeat events. Do you ever feel TIAs?
"although I can't figure out how that would cause damage to my left face and the rest of my left side...while the nerve damage is on the right?" I'd guess in your complex mystery case, we can abandon Lloyd Morgan's Canon - and say they do not have the same cause. Maybe.
"If a simple chest x-ray can generally rule out sarcoidosis (90% of people with the disease have abnormal chest x-rays), I'd be happy to have it done." You might be in the other 10%. but yes sarcoidosis is seeming unlikely.
Me? I'm on this group because my father had lymphoma some years ago. An aggressive type. So one day I dropped in to try and help for a short while. That was last autumn :)
Well, you're very brave to keep persevering. What about exercise? What if you forced yourself to exercise, then pay the price afterwards in being wiped out, then recover after days and repeat -- but over time this punishing work leads to improvement? That's one therapy you can control, anyway.
My total guess at this moment would be autoimmunity or virus. Or a spirochete because they have that hiding ability, too. Your Fx goes toward autoimmunity. I'd keep in mind maybe trying to eat strict Paleo, and taking lots of arginine as an anti-inflammatory, plus turmeric, ginger etc. That's going to the far side, but you have tried allopathic approaches.
Oh, or you might try porcine Armour (actually it's replacements, since Armour seems gone these days) for the hypoT. Or cytomel (T3).
Did you travel anyplace exotic before things went bad?
Nothing seems to be pointing to lymphoma. E.g. they are "reactive"
Since your docs haven't diagnosed the mystery problem, I'd look at possible food or other allergies. Or maybe Lyme. Or autoimmunity.
If you have willpower, you can drop the foods that are known to most commonly give sensitivity problems: gluten containing wheat, rye, etc, and dairy.
I also suppose you're been to hypothyroid groups and heard many who say that treatment should be guided by symptoms, not blood tests.
have you tried magnesium? that relates to hypoT and to cardiac conductivity, and also some of the general symptoms you have
Are you making sure to keep well watered? (IOW, that your tachycardia is not due to dehydration.)
Thanks for your response. I've actually tried magnesium and I've been drinking more water as of late given my ENT's advice that I need to keep my vocal cords well-hydrated. I've been tested for quite a few autoimmune diseases during the past two years, all negative (RA, Celiac's, lupus, etc.). I have allergies but I've been managing those for the past few years with Clarinex and a nasal spray, and several Lyme tests have indicated I have spirochete antibodies (41 kD band) but no other active bands--so no Lyme disease. Perhaps I'll lessen my intake of processed flour, wheat, and dairy products to see if this helps.
I'm not really worried about the MRI results, but I just assumed that reactive meant "enlarged", and I'm still not sure why at least one of those nodes has been enlarged for such a long time. I guess this is just another annoying symptom to add to the mystery mix!
hi, are you aware of the giant controversy surrounding Lyme diagnosis?
Also, IMO "processed" is an overused word these days. In your case, the lectins that are found in whole grain might be a problem, and so white flour can be better on that score. I'm just pointing out the utter complexity of things healthwise :)
Trial and error has some chance of revealing clues.
Think of 'reactive' insofar as the node is doing its job - whether there is a real invader to fight (bacteria, virus, fungus, parasite), or whether it's a false alarm (as in allergy or autoimmunity). So cancer would not be included in that - and the node would look differently, whether through a microscope or even usually on an MRI.
In the spirit of knowing there are mysteries, here's one suggestion: try eliminating all the supposedly 'good' grain oils like canola. At the same time,. take lots of fish oil. See if your knees improve as a first sign. Why? The O3s are anti-inflammatory, the O6s in grain are pro-inflammatory.
Speaking of inflammation, have you had ESD or hsCRP tests?
Yes, I've heard a lot of different opinions on Lyme disease from various doctors, but I figure if I all of these issues were caused by Lyme, I would probably have fairly severe neurological deficits after 2.5 years. I have been bitten by ticks in the past, though none of them deer ticks. Both my mother and brother have had Lyme, but I went to college in upstate NY (and subsequently became sick toward the end of college) and I wasn't outside in tall grass or under trees all that much--plus, it's like winter up there most of the time. I'm not sure if there's anything else I can do with regards to Lyme except see a Lyme specialist, perhaps?
In my reading, I've learned that while reactive nodes are much more likely to crop up as a result of infection, the possibility that there is a malignancy cannot definitively be ruled out without a biopsy. The only reason I was considering them as a potential concern was due to the fact that one of them has been enlarged for nearly two years now, and I have trouble swallowing and nerve damage in my throat (that cannot be attributed to a brain lesion). I'm seeing my ENT this Tuesday, so I'm just going to wait and see if he feels something should be done; otherwise, I'm not going to worry about them.
I'll consider your ideas and try to work some of them into my diet. I do take cod liver oil tablets sometimes, and I'm trying to keep up on the magnesium regime. My parents want me to have my magnesium levels checked, regardless, so I may ask one of my doctors to order this test.
I've never had ESD measured (what is this, exactly?), but I have had CRP done...not hsCRP, though. Is there any reason I should request hsCRP if my CRP was perfectly normal despite having RVOT VT?
Thanks for your continued help!
I knew somebody who went to a Lyme center in Manhattan. It was disappointing. AFAIK the only way to know for sure if active Lyme is present is to have the multiweek IV antibiotics and see if you get better. Plus, there could be a lymphocytic condition where the Lyme is gone but the immune system continues to wreak damage.
But your point about lack of general neural effects seems to be a good one.
And btw, also AFAIK the deer tick is the one found on the deer mouse, which can be indoors and that is the primary vector for Lyme, especially in winter - not actual deer in the woods :) From deer->mouse->human
Some nodes just don't go down, possibly being fibrotic.
Magnesium is mostly intracellular so AFAIK a simple serum test is fairly useless. You'd need the one that tests the Mg in RBCs.
"Erythrocyte Sedimentation Rate" is an earlier, cheaper way to measure inflammation. A normal CRP measures only in higher ranges - say 5 and up as a guess. But the high-sensitivity version of the test can detect lower levels.
But you just said something that stands out. Having the VT seemed out of place anyway. But RVOT VT? Did you know that sarcoidosis mimics RVOT VT? And look at all the other symptoms that sarcoidosis can explain, including the nodes. But OTOH you haven't mentioned shortness of breath. Even so, how's your calcium level?