MS or Lyme

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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jimmylegs
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Re: MS or Lyme

Post by jimmylegs » Sat Sep 29, 2018 9:39 am

a ha i see your point. not quite the same as a referral.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ElliotB
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Re: MS or Lyme

Post by ElliotB » Sat Sep 29, 2018 4:56 pm

There are many diseases that when a case is confirmed it is required by law to be reported to the CDC and lyme is included in the list.

BIG brother is indeed watching us!

texaslove
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Re: MS or Lyme

Post by texaslove » Sun Oct 28, 2018 10:55 am

Well, my CSF came back with 8 OG bands. What exactly is an oligoclonal band and why is this bad? (trust me, I've read articles ad naseum online and I don't understand this). I have one more lyme test to take, but likely MS. So 2 lesions in my neck and 8 bands shown in the CSF. Everything else seems OK.

Beside's the l'hermitte's (which is getting much much better) and being tired (which may just be due to stress), I am really doing fine. I have been on doxy for 25 days, and have a few more to go (just in case it's lyme). My neuro mentioned this could just be a CIS. But since my mom has MS, she felt like she could start me on injections (I *think* she mentioned copaxone but I am not 100%). She also was going to send me to a second neuro, but that appt is not for another 4 weeks (he is booked until them). I've been reading about lyme and all of the controversies surrounding lyme. The doctor made a comment that there's possibility the lyme is getting knocked out with the doxy but he doesn't really think it's the case...so, they're thinking MS.

I went to a class this past week re: autoimmune diseases and diet and I have two appointment with the presenters to learn more and get my diet in check. It seems like everyone is just so booked, so those appointments are not until 3 weeks. In the meantime, I am cutting out gluten and sugar, and trying to focus on quality sleep. I have been a vegetarian for almost 20 years but do eat fish and eggs.

The Wahl's diet was suggested...but I read also that she did chemo...so did the chemo really cure her and so affect her results? IS chemo usually suggested for MS?

Some very very interesting things were taught in this diet class about detox and gut health. Basically, getting the immune system back on track.

ALSO, I just read an article in Wired magazine- a Texas immunologist just won a Nobel Prize for discovering how T-cells interact with cancer. Could the same thing be applied to MS?

This post probably has a lot to unpack, sorry for the length. Thank you for reading.

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Re: MS or Lyme

Post by jimmylegs » Sun Oct 28, 2018 12:43 pm

hi :) obands indicate CNS inflammation. so, you can make sure each day's round of nutrient dense foods is *on balance* anti inflammatory. that doesn't mean scrap every whole food with pro inflammatory effects - the good ones are sources of important nutrients.

re wahls diet, of any out there i would say a person with a vegetarian back story would be a decent match for her dietary protocol

klenner is an older protocol, just nutrients (food and supplements) no chemo. injections are emphasized for the supplements, but i modified to use oral and sublingual options. this older protocol helped me correct for my vegan back story long before wahls came on the scene.

coincidental intersection with your comment re t-cells and cancer: i'm helping a friend thru breast cancer right now and we're looking at zinc's capacity to alter the expression of zinc transporters, which are overexpressed in breast cancer. the bloodwork went in on thursday (after a delay to hunt down the correct vial), so we're waiting to see whether they processed the sample properly and if so, what the results were. hopefully there will be some news we can use.

first time i tested zinc, i used the hospital lab and the hospital normal range, and came back deficient. consistent with long term veganism, compounded by eating too many foods that create a high zinc demand, such as wheat. correcting zinc status cleared up quite a few issues, including improved gluten tolerance.

earlier this year i had zinc tested locally and it looks 'normal' because the bottom of the local lab's normal range is way lower than what they use at the hospital. so no red flags to the doc, but i know better anyway.
update: the local lab ran plasma zinc when the requisition was for serum zinc. these are not interchangeable, and it helps explain the oddly low bottom end of that lab's range

i'm having trouble getting levels to come back up, and i think it might be because i've switched zinc supplement. my preferred local shop closed so i'm working with next best and i don't think it's good enough. next trip to stock up i think i'll try commuting to a location for my preferred vendor, so i can get the zinc product that really does the trick in my case :) circling back to o bands, zinc is anti-inflammatory :) good idea to make sure you're topped up for that, among other things!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: MS or Lyme

Post by NHE » Sun Oct 28, 2018 9:10 pm

texaslove wrote: I have been a vegetarian for almost 20 years but do eat fish and eggs.
Have you been tested for a possible vitamin B12 deficiency? If so, it would be great to know what your test results were (usually in pg/mL). A B12 deficiency can mimic MS and B12 is only found in animal products so this puts vegetarians at risk unless they take B12 supplements.

You may be interested in reading the following topic for more information.

http://www.thisisms.com/forum/natural-a ... 24857.html

texaslove
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Re: MS or Lyme

Post by texaslove » Tue Oct 30, 2018 9:29 am

Yes, I've been tested for B12 and I don't have a deficiency b/c I supplement.

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Re: MS or Lyme

Post by jimmylegs » Tue Oct 30, 2018 11:08 am

hi do you have details you can share re b12 test results (including units) and current supplement regimen?

one concern re existing test results would be whether levels are optimal vs just normal.
whats the local lab using for a lower cut off? how close are your results to the mark?

another concern, whether b12 is the only thing being supplemented. what's in your daily mix?
personally, leading up to dx i went downhill steadily - cramming in b12 like a maniac to no avail. i only turned things around when i finally broadened the scope of my regimen to include other nutrients of concern for vegans, but which had not been on my radar to the same extent.
i had done all my early health research on pro-vegan web sites. i wish they'd been more clear about the risk of permanent damage! i see the same exact language in use on vegan web sites today. hope readers these days aren't as ideological as i was :S
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

texaslove
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Re: MS or Lyme

Post by texaslove » Thu Nov 15, 2018 9:08 am

B6 was 17.0 ug/L and B12 was 1365 pg/ml (supplemented). My vitamin D has been in the 30s.

I went to a nutritionist today who recently gave a talk about autoimmune disorders. He said my D levels should be at least 60.

I've been taking some time over the past few weeks to learn about nutrition. so.much.misinformatio out there!

I see my second neuro next week. In the meantime I am going to start doing a gluten-free diet, drinking TONS of water, upping vitamin D (with K), vitamine B, folate (no folic acid), turmeric, and taking a digestive enzyme. Gut health is also very important and overlooked...

got to get back to work now just wanted to update...

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Re: MS or Lyme

Post by jimmylegs » Thu Nov 15, 2018 9:37 am

hey there, re d3 you may be interested in this morning's related post under 'natural approach' :)
update: apologies this kind of reference won't be useful now that individual posts are no longer showing specific time stamps
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

texaslove
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Re: MS or Lyme

Post by texaslove » Thu Nov 15, 2018 3:51 pm

thank you. I will look now.

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Re: MS or Lyme

Post by jimmylegs » Fri Nov 16, 2018 5:57 am

cool hope it helps / makes sense. i highlighted the key points. it's cancer context because i'm researching for a friend these days (post is not the right cancer but that's not the point anyway!)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

texaslove
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Re: MS or Lyme

Post by texaslove » Fri Nov 23, 2018 9:29 am

Well, my second neuro said he is not officially diagnosing me with MS. Besides slight numbness, my l'hermitt'es is almost gone, and my two small lesions are very, very small on my spine. There was also possibly one very tiny mark on the MRI of my brain. Those are my only symptoms. I passed all of the physical tests/balance/etc.

It's been a little over 3 months since this whole ordeal began. I'll be seeing him every 6 months to monitor my progress. He wants me to undergo a radical lifestyle change and change my diet habits, stay on vitamins, etc. He also said to lose 10-20 pounds. When this all began in August, I had just come out of a VERY stressful time, culminating in July...so a few weeks later - BAM. I'm down. Plus the possible lyme diagnoses- well, I'm not sure anyone really knows what happened. I am trying to work backwards to see what might have happened...

lots to think on ...

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Re: MS or Lyme

Post by jimmylegs » Fri Nov 23, 2018 10:15 am

wonderful news if not easy to contemplate going forward.

it might feel overwhelming, but consider taking 'strategic baby steps for success'.

no need to be too hard on yourself, too overzealous, or too restrictive. 'limit' means 'limit' and 'avoid' means 'avoid' - not 'eradicate every possible molecule as a dire contaminant'.

in some cases, blanket food avoidance can 'baby' rather than 'boost' a fragile system.

often we *need* certain foods (whole foods) in small amounts. eradication of these can be worse for you than simple limits and/or avoidance.

returning to the baby steps. consider ranking problematic dietary habits in order of severity (highly processed, fatty, sugary, salty and generally pro-inflammatory foods leap to mind).

if you haven't already, consider 'cleaning' your household food environment. make healthy choices the figurative and literal low hanging fruit at home. if you don't already do this, as much as possible stay out of the inner aisles at the grocery store. the healthy whole foods are typically around the walls.

for the day to day routine, identify and implement achievable short term reductions in the least healthy habits first.

(ooh i just made myself think of SMART goals. what is that again specific, measurable, achievable, realistic and time limited?)

then revisit and adjust in a healthier direction at regular intervals (maybe weekly?).

i'm 'thinking' out loud here - see what works best for you! i bet you could make remarkable progress by the time your next 6 month checkup happens :D
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

texaslove
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Re: MS or Lyme

Post by texaslove » Fri Nov 23, 2018 3:24 pm

I also saw a nutritionist who said something that made a lot of sense (he treats many conditions, including MS). He said whatever the diagnosis is, the root cause is autoimmune, so the goal is to get a person to a place where their immune system is strong. I'm digging in to reading about gluten free diets, paleo, etc. My neuro also advised to do a plant based diet. I'm on turmeric, D3 (and I'm supposed to take it with vit K), B complex, fish oil, and digestive enzymes. I'm also supposed to be reading up on making sure my gut is healthy.

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Re: MS or Lyme

Post by ElliotB » Fri Nov 23, 2018 4:05 pm

"My neuro also advised to do a plant based diet."


Not something I agree with (but this is the commonly accepted belief as to what is best that many choose to follow) but IF you are going to follow a plant based diet, just curious where did you come up with the idea to have fish oil (a choice I strongly agree with)?

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