so MRI and they say no change form 2 years ago, but how can nothing show up in my brain if I have so many brain issues so it seems to me?
Is this how lyme works? no trace in the brain? I know some people get lesions. Is this why Some people say to get a SPECT scan? My neuro PA didn't seem to know why that test would be beneficial so she wouldn't order it.
Posted by Keebler (Member # 12673) on :
- Every LL doctor knows about SPECT.
Therefore, it sure seems that your neuro PA is not LL (or would know about the use of SPECT with lyme). She's not going to be much good in any respect, really, if not LL.
Sure, there can be other things going on but, for someone dealing with lyme, if they see doctors who don't know all about lyme, there is no way they can be much good for us when they can't consider how lyme affects us -- and then, separately - what else might be going on.
It's reassuring, though, to see nothing that requires urgent attention from the MRI.
But a SPECT is just different it's more about showing possible hypoperfusion, less than ideal circulation issues / blood flow. But symptoms can also tell us a lot.
Basically, though, no scan can really show all the ways the brain works, or struggles. And any scan is just a photograph at that particular moment. No one scan of any kind can see inside like we think, to all the activities.
And, we (or LL doctors) know that hypoperfusion / low blood flow is common and what the symptoms are and what helps. And then we do what helps. We don't always need a scan. Wisdom can work without fancy equipment.
It's very frustrating as many of us were sort of raised to think that some fancy machine can take a photo of inside of us and tell us everything. It's just can't, though.
We are our own best measure of that. We know. We have to give ourselves credit for being our own best monitoring system. We just know. And that's enough for me (but it took me a while to get to this place).
And we just do what we can to address what helps, try to avoid what we know doesn't. One foot in front of the other.
I wish you could see a LLMD, though, as with what you tell them about you manage with brain stuff, well, they can figure out & explain a lot. Still, it's very common to have all kinds of burps with the brain. Hearing others' experiences helps connect those dots for us.
A LLMD can also take a look at the MRI and perhaps see things of relevance that someone not LL would miss. I'm thinking that you do have a LLMD, though (?)
If you do have a LLMD but just did not involve them with the MRI set up, review, etc., they could still SEE it and just give you their thoughts on if they see something subtle that might have been over looked.
Not sure how you might direct to them not just a copy of the written report but the images. Ask the LLMD's office manager how to proceed (especially so as to keep their name "quiet" from other doctors on the MRI ordering end). -
[ 08-23-2014, 03:06 AM: Message edited by: Keebler ]
Posted by hermit (Member # 44427) on :
Do spirochetes produce neurotransmitter interrupters?
Posted by Keebler (Member # 12673) on :
- Yes. Just two examples I might call up. Others will surely have other input for the brain surely does get clobbered in many ways with lyme.
1. Inflammation can cause the brain to have a harder time thinking, moving, expressing, etc.
2. The toxicity of Bb's spirochetes can alter brain chemistry and pH. Again, all bets are off as to if our nerve ending will make the right connection or not in just about any function or feeling. '
It's like the traffic lights downtown when they are on the blink. It can be anybody's guess who's turn it is and which cars will go - or not.
Or, picture a lot of different kinds of fish in the ocean and the traffic lights aren't working. What will the fish do? Chaos ensues. Just ask any fish who's been stuck in traffic when the power goes out! ;-o)
The coating around our nerves (the myelin sheath) is like electrical wires and if that coating gets worn, sparks fly. Addressing infection but also key nutrients can help (and lots of leafy greens). That green stuff in nature is excellent to help our nerve fibers. So is FISH OIL.
Even if we can't access a LL doctor we can try to address what we can to help such as anti-inflammation diet, antioxidants and liver support, good self care.
PLASTICS can also alter neurotransmitters. So be sure to avoid plastics coming into contact with any food or beverages. -
Posted by poppy (Member # 5355) on :
The usual explanation for MRI is that it looks at structure. SPECT looks at function. However, there is also such a thing as a functional MRI. Don't know how that would compare with a SPECT.
My SPECT showed severe hypoperfusion, when I had it done some years ago. None since then, but I suspect it would reveal the decline in memory and other cognitive problems I am having now.
Posted by poppy (Member # 5355) on :
P.S. I went to Columbia for the SPECT. Don't know if every place would have someone reading it that would understand what lyme can do to a brain.
P.S.S. to keebler. How in the world do you avoid plastic in contact with food? They have switched over a lot of things that used to be in glass. I especially worry about oils and mayo, not to mention acidic foods. In the switchover period, I tracked down the last glass mayo jars, then there were none. When I get tomato juice, I transfer it immediately to a glass jar, but probably already too late. We pay a price for being in a modern society.
Posted by Lymetoo (Member # 743) on :
How's your diet, Lisa? Candida/yeast can cause a lot of brain/neuro symptoms.
Posted by Keebler (Member # 12673) on :
- poppy,
Yeah, it's hard to avoid all plastics but I do manage - other than my GF dark mustard. It's the only condiment I have, though - I've found no other comparable. Instead of mayo, I just use a food oil, spices, a bit of lemon juice, etc.
All the things you mention do come in glass, it just takes a while to sort out both brands that are glass and also have no additives / are GF, etc. Tomato in glass is best, too.
When buying on line, it's especially hard to see if a container is glass or plastic.
Transferring to glass when we get it might make us feel better but sometimes, that product has been sitting in the plastic, maybe gotten hot, for a long time before we see it.
It likely has little impact to transfer it then -- especially if the food is heating while in or going into the plastic or the plastic lined canned.
Except for many if you have your nut butters ground right in your grocery store. They use the plastic containers but then it's just for the time from the store to my kitchen before it gets into glass.
Nuts will always be in a plastic bag but that's not quite the same as with liquids. Though they get a "breath of fresh air" as they are transferred to a glass jar for the fridge, too. -
Posted by groovy2 (Member # 6304) on :
I can say that memory and brain function can get better -
when I was real sick I got lost going home from work several times and could not remember my daughters name for about a month - Scared the hell out of me -
Now that my health has gotten better my memory and thinking have gotten better also -
Not perfect but better - so dont give up - Jay-
Posted by Keebler (Member # 12673) on :
- Yes, remember that symptoms are usually temporary and with treatment & time, many recover all the skills they had before (and also manage to gain some new ones, too). -
Posted by surprise (Member # 34987) on :
I'm sorry you are so worried, but no change means good, better than seeing more damage, right?
I won't spend my money these type of scans- why? What is their solution? No remedies, just worry.
Memory loss/ thinking Alzheimer's for me was Lyme disease. And Bartonella.
Much, much better with treatment. I needed proper antibiotics, because this symptom is chronic neuro progression of deadly infections.
Posted by LisaK (Member # 41384) on :
thanks everyone.
I am trying to be gluten free, sugar free, etc. and I mostly do it, but it can get hard to follow 24/7. especially with kids and a husband to feed in the house. sigh
I do notice my mental languish comes and goes so that is probably a better sign than full forward worse worse worse, right?
I do have a lot of my 'senses' back in the brain since last summer, but some days are bad and those are the ones that worry me. I tried to find LL neuro, but none around me. my LLMD is not into MRIs so I didn't tell him. I doubt he would be able to look at it an d tell me what's up anyway. he is VERY minimalistic in treatment.
he never talks to me about diet or anything like that. I have found all that out on my own over the last 15 yrs of sickness and searching for answers. I am a weakling when it comes to diet some days and maybe that is halting more progression?
or is it always an ebb and flow through this lyme stuff? I am getting so tired of it all. I hope I can last and hang in there. I have such doubts in myself.