MS or Lyme

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

Post by texaslove » Wed Sep 26, 2018 5:06 am

Hello,

This is my first post here but I've been reading for the past month, which has been a whirlwind.

I started to have some numbness and what I now know as l'hermitte's in early to mid August. My mother has MS, so my PCP sent me to a neurologist, who performed an MRI and some labs (vitamins, lyme, and a few others). Some demylenation was found in my thoracic and cervical spine (nothing on the brain) and my Lyme tests came back positive- the neuro said it looks like acute lyme. (I was in a wooded area on vacation earlier this year). My neuro wants to send me to a second, more specialized neuro to determine if, specifically, this is MS or Lyme, since the treatments are different. The second neuro is booked for 2 months.

How important is it that I get into the second neuro asap- is 2 months to long to wait? If I am positive for Lyme, then why not just start on the antibiotics for that now- what is the harm? I have tried to do as much reading as I can so I can advocate for myself, and honestly, I am a bit overwhelmed. What do treatments for Lyme look like? I am also finding out that not a lot of doctors specialize in Lyme, and it is somewhat controversial.

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Re: MS or Lyme

Post by NHE » Wed Sep 26, 2018 5:31 pm

Welcome to ThisIsMS. I did a search for discussion of Lyme here at ThisIsMS. There were 2406 search results, certainly enough to keep one busy!

http://www.thisisms.com/forum/search.ph ... mit=Search

Oh, there was a Lyme Disease documentary that aired on PBS a while back. It was called "Under Our Skin." Maybe you can find it on a streaming service if you have Netflix or something else.

texaslove
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Re: MS or Lyme

Post by texaslove » Thu Sep 27, 2018 4:35 am

Thank you. My neuro, in the meantime while I see the second opinion, wants to me to see and ID doctor. I found a referral to a specific doctor not far from me that specifically treats Lyme that I think I'd rather see. Is it common for a patient with suspected MS or Lyme to see an ID doctor?

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Re: MS or Lyme

Post by jimmylegs » Thu Sep 27, 2018 4:43 am

hi can you share detailed results on your nutrient labs? thoracic and cervical lesions raise red flags.
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 Sep 27, 2018 10:02 am

Yes, my vitamin B6 was 17.0 ug/L
My vitamin B12 was 1365 pg/mL
my vitamin D was tested and I think it was around a 28 (i can double check however)
My folate was listed as greater than 20 ng/mL (that was all it said)

the specific Lyme doctor does not have availability until December :(

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Re: MS or Lyme

Post by jimmylegs » Thu Sep 27, 2018 1:23 pm

ok some interp.

reference range resource (US)
http://www.hosp.uky.edu/ClinLab/report.pdf

serum b6
5.0-30.0 ng/mL (ug/L conversion is 1 to 1)

overuse of b6 can cause neurological issues so with that one you don't want it too high. yours looks fine. that said, i don't see low b6 flagged too too often as a concern for ms patients, so i'm not up on the most optimal part of the reference range.

serum b12
200-1030 pg/mL

usually levels too low are something to rule out en rte to ms dx. re 1365 was that a clean test, or did you have supplements in your system?

serum vit d3
28

was that ng/mL? if so it's not terrible in bone health terms but could be better as far as immune health is concerned. say, 50 ng/ml. that's what i have to go for. last test came in at 37. (and the one before that 20 - eep)

did they tell you to work on anything nutrition wise? do you have any older results for serum magnesium or serum zinc on file?
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 Sep 27, 2018 4:52 pm

yes, the vit d3 was ng

I looked through my testing and I wasn't tested for magnesium or zinc :(

I ended up making the appt for the Lyme specialist in December, and I am on the cancellation list. The nurse mentioned the lyme specialist will order more labs, including testing for molds and heavy metals. In the meantime, I guess I'll just need to go ahead with the ID appointment next week, and then the second neuro appointment is in 2 months.

To answer you other question - no, no advice or recs re: diet or nutrition wise. Am I supposed to be exercising too? I did about 14 days of whole 30 and just this week broke it a bit, but I am eating pretty healthy. Very limited dairy and bread. I've lost 7 pounds in about 5 weeks. But it might have something to do with my anxiety right now- I work in an extremely high stress field, and that coupled with the fear I have about this health situation, is making me lost my appetite.

Any advice on what I can do next?

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Re: MS or Lyme

Post by jimmylegs » Fri Sep 28, 2018 2:44 am

hi i am still curious re the b12 question.

also, re any supplementing in general. it all factors in.

magneseium and zinc are ones you'd want to ensure were high normal in serum like healthy controls, not low normal as in typical ms patients. off the top of my head high stress red flags magnesium, poor appetite red flags zinc. lowish d3 red flags both.

if you can arrange bloodwork to address info gaps, great.

if not then it comes down to making sure your diet exceeds rdas for your age and gender, for nutrients of concern in chronic illness including ms. rdas do not vary for body size or activity level, which is a problem. they do address some dietary preferences, but you have to read the fine print.

rdas are designed to prevent essential levels below normal, not to ensure high normal status.
the normal range characterizes status quo for individuals in a disease prone society.
the normal range does not characterize a state of optimal health.

sad but not surprised to hear you've not been referred to a preventive professional eg registered dietitian. one size fits all diets worry me when patients don't necessarily have complete info on personal nutrient requirements. applies even to the harvard healthy eating plate - there's still room for people to make less than wonderful choices while sticking to the basic idea.

exercise yes, but as bmi goes down, the need to ensure adequate essential nutrients are supplied to support the physical effort goes up.

if you have any recipe-style info on typical breakfasts, lunches, dinners/suppers and snacks as youve interpreted whole 30, plus any supplement info, that would be a good next step in the info dept.
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 Sep 28, 2018 4:29 am

Hi jimmylegs, thank you so much for responding to me. your help makes me feel less alone in this.

To answer your question re: the B12- yes, it was supplemented. I am on a high dose b vitamin/folate for MTHFR. My prior PCP would do some tests once a year or so (since 2015). The test she did in April 2018 (where I was not diligent with my vitamins) was 521/pg. Also, in April my vitamin D was 25 ng. So, now I take the prescription vitamin B, turmeric, vitamin D. (they have a letter that they give patients, and they check the boxes for what vitamins to take). In the past, she has also recommended CoQ10 and Omega 3. My insurance this past summer decided not to pay any claims and drop that particular doctor, so I have a new PCP doctor, who I saw in August when I started these symptoms and she promptly referred me to the neurologist.

My typical whole 30 bfast involves lots of eggs and avocado, coffee and coconut milk. lunch consists of salad and maybe some salmon. dinner is what i struggle with (staying away from bread or sweets) but usually involves veggies and cauliflower rice. I do not eat meat (haven't for 18 years) but I do eat eggs, fish, some limited dairy - though I am not doing dairy right now.

I found an article online written by someone with MS, who had enlisted the help of a nutritionist. It would be an online consultation if I hired her, as she is several states away. The diet was mainly aimed at reducing inflammation. If I should look towards something else, please let me know - I am all ears!

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Re: MS or Lyme

Post by jimmylegs » Fri Sep 28, 2018 5:43 am

ok that's decent info. esp the 521.

which high dose b is it for MTHFR? a b complex or specific components, and what is the evidence base for that approach? i haven't had much time to look at MTHFR nutrient implications. it is possible however, to drive down individual b complex components when loading other specifics. can have neurological consequences.

re your unsupplemented test. even though the reference range goes down to 200 for serum b12, ms patients who look into it often try for minimum 500 pg/ml. in my local units that means 370 pmol/l but i still try to top 500 pmol/l anyway.
i do not have as good an evidence base as i would like to support that 500 pg/ml target, but i don't have time to dig in on it at the moment.
regardless, green light for your 521 result.

docs are not yet in the habit of including cofactors with instructions to take d3, sadly.
what has been your detailed d3 regimen lately?

i can't comment much on coQ10 other than to say i work to get it from food sources personally.
i do have an extra strength 2-a-day omega 3 in the fridge but i work to ensure good sources in diet, and just take one of two gels each day.

so whole 30 does that steer you away from whole grains? if so, that goes against the evidence base. (same for dairy, within reason)
i'm a big fan of balancing pro and anti inflammatory factors so that on balance the whole diet is strongly anti inflammatory, without losing other benefits of whole foods with pro inflammatory characteristics. overall quantity and quality still being critical considerations of course.

i'm not a fan of nutritionists - even though (or because) you could call me one.
where i live nutritionists are not regulated, no college of registered nutritionists, no standards in terms of education.
it's registered dietitians who have the professional designation, and i still have some issues with them even at that higher calibre.

early in my dx year i went to a naturopathic doctor who also had ms. her nutritional advice made no sense except that it was anti inflammatory. she had nothing to address my chronic malnutrition issues from over a decade of well-intentioned but severe and unscientific dietary restrictions.
now who knows what factors are at play in each case but 12 years on, she's in a scooter and i'm still lining up for tomorrow's 10km hike. (i expect to take more breaks than others, but i need the exercise!).

as for working with a pro, technically you can do this yourself. if you start with a detailed three day diet diary (many templates available online), it will give you the structure and info needed to assess whether diet meets minimum nutrient requirements and is on balance pro or anti inflammatory even with whole grains and/or dairy in the mix. once you look at one of those, you'll be able to review the diet info you've provided here and think 'oh, *recipe* style info, i get it'. also, if interested you can get the inflammation factor database online for $5. i haven't needed to use it since i paid for it, since i did all my math back when the IF info was free via the nutritiondata web site (no longer). it is very interesting though, even though i already have a very clear sense of how to balance my intakes over the course of any given day.

speaking of which i hear there are 'apps for that' ie tracking nutrient intakes (maybe inflammation too at this stage??) - but if i were in the market for apps, which i am not, i would only want one that let me set the daily nutrient requirement numbers for myself, for situations where i knew i had higher requirements for one reason or another. also, i wouldn't buy any app that kept my data for itself vs allowing me to have my own record.

anyhoo i had better get back to the stuff i *should* be working on!! ttfn
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 Sep 28, 2018 11:04 am

thank you, sooo much to take in! i will try to respond further this weekend.

I also wanted to know if you (or anyone else reading this) had gotten a spinal tap. My neuro thinks I'll need this. Is this necessary? Is there another way?

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Re: MS or Lyme

Post by jimmylegs » Fri Sep 28, 2018 1:11 pm

no worries, i'll be happy if you take it one question mark at a time :D haha

spinal tap is a test for inflammation. it's one more nail in the ms coffin.
whether your test results comes back positive for o bands in csf (tick another ms check box) or not (leave that check box empty), making sure your lifestyle is on balance anti inflammatory, is a very smart move.

i don't think there is another way, it's pretty standard stuff. most people don't react badly. there are preventive measures you can take to minimize risk of a bad time.
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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Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Fri Sep 28, 2018 3:17 pm

So, I am a bit freaked out right now. I just received a phone call on my cell phone from my city health department asking for me to discuss my positive lyme results...WTF....

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Re: MS or Lyme

Post by jimmylegs » Fri Sep 28, 2018 4:38 pm

action is better than no action! this could be a very positive thing if they will act now on positive results, instead of waiting months to find out if it could be ms instead of or as well as lyme.
either way, good nutrition will help your body fight the best fight :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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Posts: 35
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Sat Sep 29, 2018 5:33 am

I guess I was looking at it as an invasion of privacy...somehow the lab (according to my neuro, as I later found out) automatically sent my lab results and personal info to the health department. My personal health info is in some database somwehere and I have a caseworker calling me...

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