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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Re: MS or Lyme

Post by texaslove » Wed Nov 28, 2018 7:03 pm

yes, let's start a list...THANK YOU SO MUCH! have some labs that he ordered (tucked away in my bag, I was going to go over the weekend to the lab) but from what I remember I noticed that zinc, folate, ferritin, magnesium were not on the list...all of the Bs and Ds were, along with some other inflammatory marker tests and all of the lyme coinfection tests...

If you post what I should be tested for and they're not all on the labwork he sent me home with, I can ask my PCP/DO to order the other tests (or, perhaps call back and ask the LLMD to order those).

(I keep going back to the fact that I don't feel all that bad compared to some other stories I've read...I've read stories of people with MS or with Lyme that literally can't get out of bed, or get fatigued after 2-3 hours...save for a few days in the very beginning re: fatigue/stress/not sleeping...I am not one of those people...the numbness if my fingers off and on isn't the worst thing in the world, and the l'hermitte's is getting better...so I think this may be part of the reason for not having the clinical MS dianosis? not sure...I mean, I do have two small lesions from my MRI...so that's not good...and I do get tired at night but it's because I've been on the go all day long...but other than what I've described before, I am doing OK. can be stubborn so I'm determined to beat this, whether it's lyme or MS or one or both....)

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NHE
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Re: MS or Lyme

Post by NHE » Wed Nov 28, 2018 10:26 pm

texaslove wrote:what would let me know of I am healthy enough for a round of antibiotics?
If you're taking antibiotics for Lyme Disease, then it's a good idea to also take a probiotic separated by the antibiotic by 2+ hours. This will help keep your gut healthy and hopefully prevent a C. difficile infection.
texaslove wrote:I am also not totally on board with the abx, but I am not sure what else to do re: the lyme. :(

i feel at a loss b/c if it turns out that what I do have is MS (since I am being watched for that), then I don't want MS and lyme...i'd rather just deal with the MS and get rid of the lyme. (also, there are some ideas that MS is actually lyme, or lyme is one of the many things that causes MS).
Lyme Disease has many symptoms that mimic MS. If you're being treated for Lyme Disease, then I would not accept an MS diagnosis. That will just put you into a box where every symptom you have will likely be attributed to MS because MS symptoms are so varied. You really don't want to be in that box.

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jimmylegs
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Re: MS or Lyme

Post by jimmylegs » Thu Nov 29, 2018 5:38 am

hi again, smart to prep for abx w pbx - hope they mention follow up after the fact as well. your nutritional status will help inform the composition of your gut microbiota; good nutrient status is an important foundation and of course consuming healthy PREbx too.

going forward, i should clarify that for any test-related list the details will be key. any list coming from me, if followed up on, will involve results which are generally very poorly interpreted. the specifics of the results (your serum b12 test info and level result with units is good). 'it was normal' won't do the trick by any means!
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 » Sun Dec 02, 2018 9:50 am

PLEASE READ***

This is a deviation post from taking about myself in particular, but someone I know (and look up to) has MS (she's in her 50s and is a personal trainer, so very very fit and nutrition conscious). She shared recently that, after a particularly stressful few months with her businesses, she had a flair up and is taking IV infusions to allow her to better walk again (her leg was affected in the flair up). The MRI also showed a new brain lesion and spine lesion. I am CRUSHED about this - if she can't avoid flair ups- who can?

My second neuro, the LLMD, and the nutrionist all tell me that stress is a very, major factor. In trying to piece together the last 6 months of my life, they have been very stressful. My therapist also told me I need to slow down (I am a full speed ahead, type A personality) and she even suggested a weighted blanket so I can 'force' myself to relax and calm down daily. I get very upset about things very easily- I am pretty wired most of the time unfortunately.

To add to my normal state of high anxiety, my "undiagnosis" for now is very stressful. Then last night, two times, I felt a sharp pain in the left side of my head (like, inside my head...) so I started worrying all over again. (i feel like if i had a tumor or something, the MRI would have shown it, right??). Anyway, I feel fine today, but "Dr Google" doesn't help. I'd like to find a solid lyme disease forum (like this one, but for lyme) and am having trouble finding one. I am just a worried mess today.

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jimmylegs
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Re: MS or Lyme

Post by jimmylegs » Sun Dec 02, 2018 11:17 am

here are links to two relevant subject areas here at TiMS:

http://www.thisisms.com/forum/exercise- ... erapy-f21/
http://www.thisisms.com/forum/mental-sp ... ealth-f19/

last flare up i had, if you can call it that when there's infection in the mix, i went to the lab and a bunch of essentials were low that should not have been if i was doing it right. this was after three years of high stress and prioritizing other things over self care.
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 » Sun Dec 02, 2018 12:37 pm

You and your friend need to learn how to relax and remove all stresses from your lives as the future health of both of you could be dependent on this one very significant attribute.

texaslove
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Re: MS or Lyme

Post by texaslove » Sun Dec 02, 2018 1:28 pm

thank you jimmylegs and Elliot B. :)

On another note - have you heard of NeuroRepair at a health institute in New Mexico?

texaslove
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Re: MS or Lyme

Post by texaslove » Sat Dec 22, 2018 10:44 am

Well, it's holiday season and I am still kind of in limbo. I had a ton of bloodwork done this morning, will be re-doing the lyme test and also testing for co-infections. I my naturopathic doctor last week just to review everything than has been going on (my former PCP, the one my insurance kicked off my plan). She is concerned about my WBC being 11 on two tests done in two different months- but from what I've read this might be normal in possible MS flare ups? She wants me to keep her up to date and let me know what the tests come out like...

I am also taking a saliva cortisol test at 4 different times tomorrow. I've never done that before, so the results will be interesting. My sleep the past week has gone back to being awful, so maybe seeing these levels will help.

I have definitely noted the removal of stress but I am having such a hard time with this. My job is inherently stressful, my boss is erratic and stresses me out, my work/life balance has GOT to get better...

I just finished reading Amy Meyers' book ...a lot of good things...on her book's advice, I bought a germ removing/HEPA filter for my bedroom.

I also wanted to see what ya'll thought about chiropractic care...apparently they can help???

Thank you. Sorry for all of the jumbled thoughts...that is how my mind works these days...

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jimmylegs
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Re: MS or Lyme

Post by jimmylegs » Sat Dec 22, 2018 11:21 am

hey there :)

iima, what's on the list of tests done today? re lyme, would serum manganese be in there by any chance?

re wbc 11, can we assume that's high normal ie top end of 4000-11000 per microliter? could be related to several actionable causes.

re chiro, mixed and long ago reviews from two appointments. really the only good takeaway was learning at the first appointment that i had normalized chronic pain. then i just lived with it for years. finally it was a PT many years later who got rid of it, by working on my mid back and neck. *that* was awesome.
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 » Sun Dec 23, 2018 7:27 am

I checked the paperwork (I had the lab make me a copy this time) and serum manganese is not listed...under the nutrition section the only ones checked off are: Vitamin B6 Plasma, Vitamin B12 and Folate, and Vitamin D 25-Hydroxy. I did have magnesium tested in April of this year and it was 2.0 mg/dL. Looking at the most recent lab paperowork, there are lots of other things being tested for like cortisol, lyme and coinfection testing, hormones (again).

My old PCP (I'm just going to pay out of pocket and start seeing her again, btw) and I compared testing she did in April of this year with the most recent labs from the neurologist. There were some things she noted, like- in April my ALT was 46 U/L. It is now down in the 20s (she had put me on a vitamin regimen, including milk thistle back then and it looks like it worked...). In April my vitamin B12 was 521 pg.mL (not supplemented) and now, with supplements, it is over 1000. Even in April, my inflammation markers were high (they have been for a while though). In April my vitamin D 25-OH was 25 ng/ML. Now it is in the 30s. Back in April my WBC was 9.3 and now it is 11.1 (the high count also noted by my PCP- who seemed more concerned than anyone else about it...which concerns me now too- just a lot of worry all around...).

I mentioned I had fallen off of my vitamin regime earlier this year (that's why I saw her back in April) and it looks like after I got back on track, some of my labs got better (evidenced by the August, September and October labs)...but not before I started having the l'hermitte's problem which sent me to the neuro in August. So putting together a timeline- I must have felt something was beginning to be "off" earlier this year so I went to see the PCP in April- sure enough, my lack of taking care of myself and not taking the vitamins were reflected in the labs in April...then, it must have taken a few months to get back on track (with some of the things...) but in the meantime 4 months later, in August- I'm in the neurologist's office...does this make sense?? And then perhaps throw a lyme infection in the mix?

I'm starting to pay attention to my sleep and this past week was very stressful at work and I did not sleep well at all. On Thursday and Friday morning (both nights had interrupted sleep) I noticed my hands were numb, and my right hand was feeling sleepy...this was definitely new as mostly the numbness was in my left two fingers. I had an excellent sleep last night and my hands are totally fine this morning... no numbness...my joints are a bit achy (but that might be because I haven't really stretched or exercised in two weeks). I am also off of work for the holidays, so my stress is inherently reduced because of that.

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jimmylegs
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Re: MS or Lyme

Post by jimmylegs » Sun Dec 23, 2018 10:24 am

ok good info

re magnesium i may have said as much earlier on, but it's wise to consider 2.5 mg/dl a lower cutoff for optimal healthy status, as distinct from 'normal' (ie the bell curve which includes both your 'einsteins' and 'gumps').

higher serum mag will improve dose response to d3. re serum d3 status 30's okay, 50 would be ideal (as previously mentioned, and as long as magnesium stays high normal as well).

good news re the alt. re the wbc results, serum zinc levels (mentioned earlier) might be worth a look.

for my 2c, b12 was ok if borderline at 521 pg/ml. now might be on the high side, based on some optimal range info i found recently.
question: what's your current supplemental dose and timing?
there are implications for circadian rhythm, sleep wake cycles etc.

glad to hear symptoms are better today :) makes sense - stress burns through nutrients. relaxation helps you hold on to what you've got on board. all interconnected.

as for new issues since getting back on the regimen, devil is in the details.
if you can post info, we can have a look see if anything could benefit from some tweaking.

in the meantime, i'll go have a review of the earlier pages, refresh memory :)
edit: are there serum zinc or serum copper numbers in your lab results?
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 » Sun Dec 23, 2018 3:11 pm

no zinc or copper testing from April :(

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jimmylegs
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Re: MS or Lyme

Post by jimmylegs » Sun Dec 23, 2018 3:16 pm

time to consider a new round of tests maybe? check the efficacy of the last few months' efforts?
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: 36
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Mon Jan 14, 2019 1:37 pm

It's me again!

I am meeting with the Lyme doctor this week to review the labs done right before Christmas. In the meantime, the LLMD's office called me and told me that I was being called in (to my local pharmacy) 5 mg of Cortef to take b/c my morning salvary cortisol is very low -I am to start that asap.

Any ideas about this? it's a steroid (but a low dose) and don't steroids help with MS? ALso, I've been researching about antibiotics and MS...and a lot of the same abx are used for both lyme and MS. Very interesting.

My l'hermitte's is almost nonexistent now, but joint pain/numbness in my hands is noticeable, but mostly in the mornings. The tingling in my back has lessened a lot, also.

texaslove
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Re: MS or Lyme

Post by texaslove » Wed Jan 16, 2019 5:20 pm

I received my most recent labs (done right around Christmas) and met with the LLMD today.

of note:

My vitamin B6 was very high- 58.6 ug/L.
vitamin B12 was 927 pg?ml
folate more than 20 ng/mL
vitamin D, 25 hydroxy was 36.9 ng.mL
Chlamydia pn was negative
EBV showed antibodies to past infections (it was explained to me that mostly everyone has these antibodies)
salivary cortosol was low to low normal in morning (but he wanted to put me on low dose Cortef)
my WBC was still slightly elevated (12.2)

I also had some x-rays done at the chiropractor, who called me today and told me that she reviewed the xray and knows exactly the area that is affecting my numbness in my hands...we're supposed to have a follow up meeting next week.

my lyme bands show past infection with lyme specific bands (iGG)

any thoughts on the above? I can stop taking my methylB vitamin complex, and just take my vitamin B pill. Not sure about the other things...

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