MS or Lyme

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
User avatar
NHE
Volunteer Moderator
Posts: 5103
Joined: Sat Nov 20, 2004 3:00 pm
Has thanked: 1 time
Been thanked: 10 times
Contact:

Re: MS or Lyme

Post by NHE » Wed Jan 16, 2019 5:54 pm

texaslove wrote:
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.

High levels of vitamin B6 can cause neurological problems by interfering with proprioception.

viewtopic.php?p=178886#p178886

texaslove
Family Member
Posts: 35
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Wed Jan 16, 2019 7:04 pm

hmm...went to look at September labs and my B6 plasma was 17 ug/L. (weird)

i was also positive igg for mycoplasma pneumonia - but doc said not to worry, a lot of people are

User avatar
jimmylegs
Volunteer Moderator
Posts: 11905
Joined: Sat Mar 11, 2006 3:00 pm
Been thanked: 21 times

Re: MS or Lyme

Post by jimmylegs » Thu Jan 17, 2019 5:54 am

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)
re b6 as you mention it was fine when we discussed '3 months ago'. i know you have the mthfr element in the mix but yes probably a good idea to dial it back a bit

b12 is also borderline high. i don't have the top end of the safe range at my fingertips but it might have been 950 and patients with higher levels start to have increased risk of certain outcomes (i would have to relocate that study for details)

re folate it's a bit of a pain they don't provide specifics. i definitely had some symptoms in the past, asked for a folate test since it was the only thing in my regimen that had changed, and it was sky high. i suspect a cofactor problem but i was not able to figure out specifics.

we also discussed using a complete complex vs individual b-vits, looks like that is what your have been doing but taking a step back as you mention does sound like a good idea.

d3 is borderline from an ms perspective, but clearly better. ensuring optimal d3 cofactor and mag status, as well as clear info on timing/combinations intakes in relation to d3, will make important contributions to optimizing d3 status. my last result was 66.5, coincidentally also up from 36. i had taken 50K IU of d3 per day for 10 days, with plenty of magnesium and other nutrients, to make that happen. fwiw dose response varies not only with cofactor status, but with body size.

possible next steps to consider:

1. updated serum magnesium info, as well as details of daily magnesium intake and timing in relation to d3 would be informative info to review.

past serum mag at 2.0 mg/dl was suboptimal ie within the range of technically normal, but a percentage of people will still exhibit mag deficit in that part of the range. people with levels at least 2.3 and up to 2.5 mg/dl are less likely to suffer mag deficit symptoms.

2. as previously mentioned and especially in the context of mthfr genetics combined with plant based diet advice, as well as having the adrenal/cortisol element in the mix, could be good if serum copper and serum zinc levels were obtained and monitored periodically.

3. with attention to cofactors, consider a 10 day x 50K/d boost for d3, to kick it into the 50 ng/ml ballpark (may go a bit higher, my dose response after last two similar boosts ranged from 15 to 30 ng/ml increases in serum d3. the first boost achieved less than i had expected, the second one worked better. i suspect the months of very careful attention to nutrition helped my body use the d3 better in round two. i know weight factors in but i don't think i had any relevant weight loss between the first and second boosts and their follow up tests.

possibly of interest:

Exploring the effect of vitamin D3 supplementation on the anti-EBV antibody response in relapsing-remitting multiple sclerosis
https://journals.sagepub.com/doi/abs/10 ... 8517722646

Abstract excerpts:
"This study utilized blood samples from a randomized controlled trial in RRMS patients receiving either vitamin D3 (14,000 IU/day; n = 30) or placebo (n = 23) over 48 weeks.
...
Conclusion:
High-dose vitamin D3 supplementation selectively reduces anti-EBNA-1 antibody levels in RRMS patients. Our exploratory studies do not implicate a promoted immune response against EBV as the underlying mechanism."
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
Family Member
Posts: 35
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Thu Jan 17, 2019 10:48 am

NHE and jimmylegs-

thank you for both responding! It helps me feel less alone.

My followup neuro appt is in May, and I fear that I won't know anything else until they order another set of MRIs. Was this an isolated incident with the MS? Will I have more lesions? Will the two small ones I have still be there? Every doctor (there have been 6 now) agrees that whatever is going on, it is in the very early stages (though, with neuro symptoms, I don't exactly feel that way).

As always, lots of good info to devour!

User avatar
jimmylegs
Volunteer Moderator
Posts: 11905
Joined: Sat Mar 11, 2006 3:00 pm
Been thanked: 21 times

Re: MS or Lyme

Post by jimmylegs » Thu Jan 17, 2019 10:58 am

i suspect you won't get any more info on magnesium or new info on zinc and copper without making a point of asking.

also without specific and detailed daily regimen info, it is impossible to add any further insight which could help with your day to day experience while you wait for next mri etc

in the meantime happy reading :)
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
Family Member
Posts: 35
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Thu Jan 17, 2019 12:45 pm

Hi jimmylegs,

thank you so much for responding back to me and I'll tell you my daily regimen! (i wasn't implying that I was going away- so sorry if my post read like that!)

morning:
cortef 5mg
omega 3 4000 mg
turmeric 1000mg
B12 4000mg
vitamin c 1000 mg
probiotics (saccromyces boulardi and vsl#30

noon: vitamin B (again) and cortef 5mg

evening: repeat the morning but add sublingual vitamin K and vitamin D 5000mg

starting next week, the LLMD is putting me on an herbal regime of samento and banderol for two months. this is probably the controversial part, but according to this doc, my specific lyme bands show that I was indeed exposed to lyme recently and I now have antibodies to it. so, the herbal is just to make sure it is going to get knocked out (or down?).

if i need to add zinc, copper, magnesium- I am not sure where to add it.

I wrote vitamin B12 above but it was originally a methyl-B complex- but since mu B6 was so high, I was told to only take the B12. I also have a Rx for a supplement called "PodiaPn" for MTHFR and that has like a huge huge dose of folate and B12. It;s not cheap, but I may need to get back on it? Looks like with the most recent labs, that B12 went down over 200 points.

it's all still overwhelming to me, so I read things over and over to make it stick in my head!

I am also a pescetarian, and doing gluten free. the chirpractor I met with told me I should take it one step further and do AIP or something like that...so, looks like no eggs?

User avatar
jimmylegs
Volunteer Moderator
Posts: 11905
Joined: Sat Mar 11, 2006 3:00 pm
Been thanked: 21 times

Re: MS or Lyme

Post by jimmylegs » Thu Jan 17, 2019 4:56 pm

ffs it just refreshed or something and wiped my post. i was almost done too.
i'll redo another time. for now short answer re mag:
take 400mg of mag glycinate per day, 200mg with the d3 and 200mg well away from it.
more later!
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!

User avatar
NHE
Volunteer Moderator
Posts: 5103
Joined: Sat Nov 20, 2004 3:00 pm
Has thanked: 1 time
Been thanked: 10 times
Contact:

Re: MS or Lyme

Post by NHE » Thu Jan 17, 2019 10:30 pm

texaslove wrote:morning:
cortef 5mg
omega 3 4000 mg
turmeric 1000mg
B12 4000mg
vitamin c 1000 mg
probiotics (saccromyces boulardi and vsl#30

noon: vitamin B (again) and cortef 5mg

evening: repeat the morning but add sublingual vitamin K and vitamin D 5000mg
Re. B12: I hope that you really had meant to write micrograms not milligrams.

Re. turmeric: You may want to look into Longvida curcumin. It's claimed to have 63x better absorption than regular curcumin. It has also been shown to cross the blood brain barrier.

https://vs-corp.com/longvida/

Longvida is available from several supplement companies, e.g., https://www.vitacost.com/now-curcubrain ... g-capsules

User avatar
jimmylegs
Volunteer Moderator
Posts: 11905
Joined: Sat Mar 11, 2006 3:00 pm
Been thanked: 21 times

Re: MS or Lyme

Post by jimmylegs » Fri Jan 18, 2019 6:06 am

ok let's try this again.

hi no i didn't think you were taking off, just that you might be a while reading - good to see your current regimen info :)
morning:
cortef 5mg
omega 3 4000 mg
turmeric 1000mg
B12 4000mg
vitamin c 1000 mg
probiotics (saccromyces boulardi and vsl#30
re morning
cortef - i personally would be looking for key nutrients to support adrenal health.
you have some but not all in the current mix; would be good to know zinc (also copper) magnesium and ferritin status.

omega 3 - how have you decided on daily dose and what is your intake ratio daily in comparison to omega 6 fatty acid? if you don't know, a diet diary would help you figure it out. templates are available online as mentioned previously

turmeric - i don't usually go beyond essential nutrients, but happened to read a study not too long ago in which curcumin in particular was shown to help invert a bad serum copper zinc ratio. not sure if we already went over that here or not. i also don't recall details of study design or whether other researchers have successfully duplicated those findings.

b12 - i too assumed you meant mcg not mg. i wouldn't think you need so much, especially given your levels.

vit C - looks ok. i take 1000 per day because that's the size of my powder caps, but i did read a balance study which if memory serves, indicated that participants' urinary vit C levels started increasing at intakes above 500 mg.
noon: vitamin B (again) and cortef 5mg
re noon
b12 again i don't think you need this much even one time a day, but if i had to pick morning or noon, i would pick noon.

cortef - as above, investigate essential nutrients to support adrenal function.
evening: repeat the morning but add sublingual vitamin K and vitamin D 5000mg
re evening
vit k - how much sublingual to go with that d3

vit d - assuming it is d3 and not d2. if not, d3 is the better option.
also assuming you meant 5000 IU not 5000 mg of vit d
that intake could use some real help via balanced magnesium as mentioned previously.
to recap you (as average joe) need 400mg of magnesium each day, and more if you have higher needs for one of a multitude of possible reasons.
if you take 200mg with d3, consider it gone only to servicing d3 interactions.
count the other 200mg towards your 400mg daily needs (again you could need even more depending on multiple factors)
after the one mag for d3 and one mag for you, it's up to your diet and multi to handle the rest :)

beyond mag, do consider a high quality 3 a day multi taken in divided doses through the day. maybe *after* b6 is back in control though!
starting next week, the LLMD is putting me on an herbal regime of samento and banderol for two months. this is probably the controversial part, but according to this doc, my specific lyme bands show that I was indeed exposed to lyme recently and I now have antibodies to it. so, the herbal is just to make sure it is going to get knocked out (or down?).
again i don't tend to put herbs first, most people have big gaps in their basic essential nutrition. last time i had a look at essentials in the lyme department, i think manganese emerged as a nutrient of interest. everything else that supports balanced immune system function also being important.
if i need to add zinc, copper, magnesium- I am not sure where to add it.
the concern with zinc and copper is not to inadvertently deplete copper via excess zinc.
because with mthfr in the mix you are prone to high copper and low zinc, it should not be a concern but would be good to know.
i currently take a 3-a-day multi which contains zinc and no copper. i have copper in diet and in the past i have worked to ensure the products i choose contain properly balanced zinc and copper amounts. whenever i have had my copper level tested, results have not been worrisome.
I wrote vitamin B12 above but it was originally a methyl-B complex- but since mu B6 was so high, I was told to only take the B12. I also have a Rx for a supplement called "PodiaPn" for MTHFR and that has like a huge huge dose of folate and B12. It;s not cheap, but I may need to get back on it? Looks like with the most recent labs, that B12 went down over 200 points.
ok you may have posted this but how were b12 levels with only podiapn taken? i'm a fan of using the whole complex, but emphasizing whole food first, multivit/min second, with extras padded around that only if and as needed.
it's all still overwhelming to me, so I read things over and over to make it stick in my head!
i remember that feeling; so many 'eureka' moments repeated before things finally stuck. my brain is in far better shape these days, but there's also that decade+ of experience contributing at this stage!!
I am also a pescetarian, and doing gluten free. the chirpractor I met with told me I should take it one step further and do AIP or something like that...so, looks like no eggs?

pescetarian is good within limits of course. i personally consider heavy metal contamination and sustainability issues.

re gluten - i'm a fan of boosting dietary nutrient density and limiting dietary nutrient drains. to my mind, gluten avoidance only represents the latter half of that equation.

i probably won't have any gluten today, but i definitely have some carefully selected products which contain gluten each week. for example my 2-3 slices per week of sprouted organic 12 grain rye toast :) chosen specifically to reduce known gluten effects.

re AIP - not a fan where (whole) food avoidance is concerned.
same idea as for gluten.
nourish the immune system with balanced essentials, yes.
but don't baby a broken system with excessive avoidance.

when i was diagnosed i had not had an egg in over a decade.
naturopath said 'avoid eggs they can *potentially* trigger the immune sys'.
in contrast, klenner protocol said 'high protein diet, 2-3 eggs for breakfast'.
logic dictated that eggs were not my culprit and that change was going to benefit me more than continued and increasing food avoidance. my protein intake had been low, not high. i needed a lot more basic macro and micro nutrients, not fewer.
i ate the eggs and the rest of it and i got the most dramatic and rapid improvements of the entire time since dx. yes it plateaued, i had done permanent damage. maybe some people need to starve a broken immune system of certain foods, but not highly active chronic ideological vegans like i had been :S
these days i eat 2-3 eggs per week.

and that is my 2c on all of that!
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
Family Member
Posts: 35
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Fri Jan 25, 2019 6:22 am

Jimmylegs and NHE and everyone...I have been spending hours each day reading books and articles, seeing doctors.nutrionists/health specialists on avereg every 3 weeks or so since I began having trouble five (yes, 5!) months ago (it doensn't seem that long...and seems scary that I am still having issues!) to try to find out more about our bodies and how to achieve optimal health. I still have a long way to go, but when many different sources (including doctors and specialists) are circling back to the same thing...well, I think there is something there...

nutrition, stress, healing infections, avoiding toxins, PROPER DIET!!!

One of books I am reading goes into peridontal disease as a trigger or cause for autoimmune diseases...I opened my computer today and the following article was in bold...interesting...

https://www.newscientist.com/article/21 ... o-stop-it/

ElliotB
Family Elder
Posts: 1794
Joined: Mon Feb 03, 2014 4:08 pm
Has thanked: 1 time
Been thanked: 9 times

Re: MS or Lyme

Post by ElliotB » Fri Jan 25, 2019 9:02 am

JAPANESE KNOTWEED ROOT has been shown as an effective treatment for lyme. Have you done any reading on this, specifically Stephen Buhner’s research?

ElliotB
Family Elder
Posts: 1794
Joined: Mon Feb 03, 2014 4:08 pm
Has thanked: 1 time
Been thanked: 9 times

Re: MS or Lyme

Post by ElliotB » Fri Jan 25, 2019 3:34 pm

You may find this article on knotweed of interest:

https://www.beneficialbotanicals.com/th ... e-disease/


They offer numerous natural products to treat lyme.

texaslove
Family Member
Posts: 35
Joined: Thu Sep 20, 2018 4:20 pm

Re: MS or Lyme

Post by texaslove » Fri Jan 25, 2019 4:04 pm

i will read that article- thank you Elliot! My LLMD wants me to do Banderol and Samento protocol. I haven't ordered it just yet, but am planning on next week.

User avatar
jimmylegs
Volunteer Moderator
Posts: 11905
Joined: Sat Mar 11, 2006 3:00 pm
Been thanked: 21 times

Re: MS or Lyme

Post by jimmylegs » Fri Jan 25, 2019 4:47 pm

knotweed drives me nuts. will check out your article link, TL :)
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
Family Elder
Posts: 1794
Joined: Mon Feb 03, 2014 4:08 pm
Has thanked: 1 time
Been thanked: 9 times

Re: MS or Lyme

Post by ElliotB » Sat Jan 26, 2019 6:27 am

Knotweed, although a nuisance plant growth wise, offer so many important health benefits. Not sure why the health info on this plant has effectively been suppressed, its health benefits have been known for a long, long time. IMHO if the info is correct on it, this supplement should be taken by anyone with any kind of autoimmune disease. Frankly if a pharmaceutical company came our with a superpill making the same claims and had clinical evidence that it worked, everyone with any kind of autoimmune disease, MS or otherwise, would likely willingly be taking it. And the cost would probably be 100 times the current cost! Surprised a large pharmaceutical firm has not yet figured it out. I have highlighted some of the key points. This article is but one on many, many available on the web about Knotweed!

I have tried to find negative info about Knotweed, but aside from it being a nuisance/invasive plant that thrives in disturbed areas and once established spreads rapidly and unlike most plants can tolerate deep shade, high temperatures, high soil salinity and drought (conditions that most plants cannot survive under), I have not been able to find any!


From the link above:

JAPANESE KNOTWEED ROOT
Japanese Knotweed (Polygonum cuspidatum) has a wide range of actions. It is a long list, but worth citing here: antibacterial, antiviral, antischistosomal, antispirochetal, antifungal, immunostimulant, immunomodulant, anti-inflammatory, antioxidant, antiatherosclerotic, antihyperlipidemic, antimutagenic, anticarcinogenic, antineoplastic, vasodilator, inhibits platelet aggregation, inhibits eicosanoid synthesis, antithrombotic, tyrosine kinase inhibitor, oncogene inhibitor, antipyretic, cardioprotective, analgesic, antiulcer (slightly reduces stomach acid and protects against stress ulcers), hemostatic, and astringent.

A broadly systemic plant, Japanese Knotweed Root modulates and enhances immune function, is anti-inflammatory for both arthritic and bacterial inflammations, protects the body against endotoxin damage, and is a potently strong angiogenesis modulator, highly protective of the endothelia of the body. Its constituents cross the blood-brain barrier where they exert actions on the central nervous system: antimicrobial, anti-inflammatory, as protectants against oxidative and microbial damage. It is highly specific for bartonella infections and good, but of less importance, in mycoplasma infections.

Japanese Knotweed Root is a very strong inhibitor of cytokine cascades initiated by bacteria. During Lyme infection, for instance, there is a spirochete-stimulated release of a number of matrix metalloptroteinases (MMPs) which occurs through a particular grouping of pathways. While there are a number of herbs that can reduce autoinflammatory conditions stimulated by MMP-1 and MMP-3 (for example Curcumin), the only herb that specifically blocks MMP-1 and MMP-3 induction through three particular pathways is Japanese Knotweed Root.

Japanese Knotweed Root enhances blood flow, especially to the eyes, heart, skin, and joints. This makes it especially useful in Lyme and its coinfections as it facilitates blood flow to the areas that are difficult to reach to kill the organisms. The plant’s compounds easily move across the gastrointestinal mucosa and circulate in the bloodstream.

Japanese Knotweed Root is an angiogenesis modulator, stimulating the formation of new blood vessels and the healing of damaged ones in areas such as burned skin, but also stops the development of new vessels and blood flow in areas where it should not occur, such as in malignant and benign tumor formation. It maintains the blood vessels themselves and as part of this action, has specific modulating and protectant actions on the endothelial cells that line the blood vessels.

Post Reply
  • Similar Topics
    Replies
    Views
    Last post