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 » Fri Nov 23, 2018 4:57 pm

for sure if people go plant based it makes some sense to also go gluten free WITH EXTREME CAUTION and strict attention to nutrient requirements. plant based diets can have a dangerous high copper low zinc dynamic as it is. adding gluten can easily pull the zinc down still further, making a bad copper zinc ratio even worse.

the plant-based push right now scares me because people don't necessarily have it dialed in that they won't absorb for example zinc from plant foods the way they do from animal sources. you may know that if you want 6mg of zinc from a plant source, you need to eat a serving that says it contains 9mg. i've been reading about what you need to help with zinc absorption. protein. veg source? legumes. yep legumes with all their phytates that like gluten, deplete zinc. not to mention those phytate-laden zinc-stealing dark leafy greens! pure evil.

all this stuff is where total avoidance breaks down for me. hence, imho balance and moderation are key strategies :)
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Re: MS or Lyme

Post by NHE » Fri Nov 23, 2018 5:00 pm

texaslove wrote:My neuro also advised to do a plant based diet.
Eating more fruits and veggies is a good thing. However, a completely vegetarian diet can be problematic as vitamin B12 is only found in animal products and it can lead to a B12 deficiency risking neurological damage unless you take a B12 supplement. You may be interested in reading more about B12 in the following topic. http://www.thisisms.com/forum/natural-a ... 24857.html

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Re: MS or Lyme

Post by jimmylegs » Sat Nov 24, 2018 6:59 am

of course if you are maintaining your supplementation regimen and continue to have levels like 1365 pg/mL i don't think you will have to worry much about the b12 aspect of a plant based diet. there are other valid concerns certainly, and i don't know specifically how all of those might intersect with your genetic circumstances.
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 jimmylegs » Sat Nov 24, 2018 7:01 am

oh jeez i just started checking and right out of the gate the first thing i see about MTHFR deficit is high copper and low zinc. please be careful not to compound via plant based diet.
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 jimmylegs » Sat Nov 24, 2018 7:13 am

this looks somewhat relevant and is fairly recent, doesn't look like they're much into people research yet though:

Effects of zinc deficiency and zinc supplementation on homocysteine levels and related enzyme expression in rats. (2015)

Abstract
Methionine synthase (MS) and betaine-homocysteine methyltransferase (BHMT) are both zinc (Zn)-dependent methyltransferases and involved in the methylation of homocysteine. The objective of this study was to investigate the effects of dietary Zn supply on homocysteine levels and expression of the two enzymes in growing rats. Male weanling Sprague-Dawley rats were assigned randomly to four dietary groups (n=8/group) for 3 weeks: Zn deficient (ZD; <1mg Zn/kg); Zn control (ZC; 30mg Zn/kg); Zn supplemented (ZS; 300mg Zn/kg); pair fed (PF; 30mg Zn/kg) to the ZD group. Serum and femur Zn concentrations were 83% and 58% lower in ZD, and 49% and 62% higher in ZS compared to ZC (P<0.001), respectively. The ZD rats had lower feed intake (37%), body weight gains (45%), liver (43%) and kidney (31%) weights than those of ZC (P<0.001), but these parameters in ZD were not significantly different from the PF controls. Serum homocysteine concentrations were 65% higher in ZD compared to PF (P<0.05), and there was no significant difference in serum folate levels between ZD and PF groups. The mRNA expression of liver and kidney MS was 57% and 38% lower in ZD than PF (P<0.001), respectively. Hepatic and renal BHMT mRNA levels were not altered in ZD compared to controls. The aforementioned measurements were not significantly different between ZS and ZC groups, except Zn levels. These results demonstrated that homocysteine homeostasis appeared to be disturbed by Zn deficiency but not Zn supplementation, and elevated serum homocysteine might be due to reduced expression of MS during Zn deficiency."
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 » Sat Nov 24, 2018 12:13 pm

Fish oil came from my nutrionist and also, in years prior, from my PCP (who is DO) but I now have to pay out of pocket for b/c my insurance dropped her for doing too much labwork for all of the patients (or something like that).

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Re: MS or Lyme

Post by texaslove » Sat Nov 24, 2018 12:30 pm

I've been taking some time to absorb everything and I still feel a bit overwhelmed. Maybe I did get bit by a tick on our last trip to a wooded area but the doxy that one of the first doctors put me on cleared it up? Maybe that's why my symptoms are better...or maybe I just had a clinically isolated incident? So my l'hermitte's is better since some time has passed.

The first neuro sent me to the second neuro...neither want to officially diagnose me...so I'm just kind of...here now...trying to not let things worry me or become stressed out...

I had already made an appointment with an LLMD, but I'm wondering if I should cancel or postpone...he will just want to order more tests (the office told me about a test that costs $500) plus his appointment fee is $600. LLMDs typically don't take insurance. I mentioned all of this to the natural nurtionist the other week, who seemed to think that even if it is lyme...well, if the immune system is boosted up, then a person is able to overcome it (does that make sense?). From what I've read ...lyme is one of the most controversial things to treat. It's kind of scary reading about it online.

To answer the question about the plant based diet, the second neuro is really pushing it. They definitely said no to meat and dairy was a big no-no. No one mentioned the fish oil supplements (I listed all of my vitamins on the intake sheet). I've been a pescetarian for years and years, so no chicken/beef/pork is really NBG to me.

Also, with the MTFR gene...well, not sure where that factors in except I was told absolutely no folic acid...only folate. I think that is why my B12 (supplemented) is so high- I take a prescription vitamin B/folate pill. I have been for about 3 years.

However, it should be noted that for a few months, I was OFF all of my supplements, not eating well, not working out much, and going through a VERY stressful time at work...then we went on vacation (I can't say I did much relaxing though) and immediately came back to the stress filled job, then 3-4 weeks later...BAM the l'hermitte's happened...

I will say that the job is better now (some staff leaving helped that).

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Re: MS or Lyme

Post by jimmylegs » Sat Nov 24, 2018 1:28 pm

hopefully things get better!

i'd be interested in your health pros' input on the zinc question.
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 Nov 25, 2018 5:37 am

my DO will order all of the vitamin and mineral tests (the PCP I switched to in August would not - she only ordered vitamin D in August) so I'm just going to go back to my DO and pay out of pocket since she isn't constrained by my insurance any longer. My first neuro ordered lots of labs (including B) but not zinc or some other notable vitamins/minerals. I will say that my Insurance has really been great overall and I do pay a lot per month for my premium, but in comparison I haven't had to spend a lot out of pocket - for 2 MRIs on 2 separate occasions and a lumbar puncture - I think I've paid less than 500 out of pocket. The bills/EOBs are like 10k.

The second neuro I saw also specifically told me that MS is not genetic...it is environmental. So basically, just b/c my mom has it does not put me at a higher risk than anyone else....which I found interesting b/c I thought there was a small genetic predisposition? or is it a genetic predisposition to environmental factors?

My pressing question right now is the LLMD appointment next week. I'm not really sure if I should still go or not. I'm pretty burnt out on doctors and labs...besides some numbness in tips of a few fingers, some tiredness at night, and a fading l'hermitte's, I feel fine. Can myelin regenerate? Did the doxy that one of the docs gave me in September knock out whatever I had? (maybe no one can answer these questions...I don't know...). The appointment with the LLMD will cost $600 for 2 hours next week...

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Re: MS or Lyme

Post by jimmylegs » Sun Nov 25, 2018 6:45 am

hey there, glad you will be able to have a couple more tests done.

i think to some extent the occurrence of ms within families may have to do with intergenerational learned behaviours, traditions predisposing to poor health being passed down. but it has been forever since i looked into anything like that so no relevant studies leap to mind.

as for the appointment, if it were me as long as it wasn't urgent i would wait to see what the nutrient tests had to say before seeking other medical expertise. i wouldn't want any side effects of potential nutrient imbalance muddying up the circumstances the doc's trying to assess. that is just me though! sometimes mainstream has to take the lead. eg i am helping a friend navigate cancer treatments. every last standard approach in the book to the letter, and as for what i can contribute, all the pros know about and are helping with (ok sometimes interfering with but so be it) the additional nutrient testing (which by the way did pick up deficiencies they would never have looked for) and the supplement regimen. important to strike the right balance. ultimately your call!
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 Nov 25, 2018 7:40 am

texaslove wrote:The second neuro I saw also specifically told me that MS is not genetic...it is environmental. So basically, just b/c my mom has it does not put me at a higher risk than anyone else....which I found interesting b/c I thought there was a small genetic predisposition? or is it a genetic predisposition to environmental factors?
According to the National MS Society...

https://www.nationalmssociety.org/What- ... -Causes-MS
MS is not an inherited disease, meaning it is not a disease that is passed down from generation to generation. However, in MS there is genetic risk that may be inherited. In the general population, the risk of developing MS is about 1 in 750 - 1000. In identical twins, if one twin has MS the risk that the other twin will develop MS is about 1 in 4. The risk of developing MS is also increased when other first degree relative (parents, siblings and children) have MS, but far less than in identical twins.
More detailed info on risk...

https://www.nationalmssociety.org/For-P ... t/Genetics
  • The risk of developing MS in the general population is approximately 0.1%.
  • The risk for a child with one parent who has MS is approximately 2%.
  • The risk for a child with two parents who have MS is approximately 12.2% (Ebers et al, 2000).
  • The risk for a dizygotic twin and other siblings is approximately 5%.
  • The risk for monozygotic twins is approximately 25% (Willer et al, 2003).
  • The risk for second-degree and third-degree relatives is approximately 1%.

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Re: MS or Lyme

Post by texaslove » Wed Nov 28, 2018 2:09 pm

Thanks to everyone has responded. So much knowledge- I sincerely thank you!

I did not cancel the LLMD appointment b/c I didn't read my paperwork correctly re: the cancellation notice (I would have lost my deposit for not giving more than a days's notice). So I went and he reviewed all of my tests and spent 2 hours with me. He said that the first test that was done (that started the whole lyme issue) was very specific to lyme - no other bacteria would have produced the bands that were shown. Since I was on an antibiotic after that test came back positive, then by the time the second test came around (close to the end of the doxy treatment) it may have calmed the lyme bands down a little, but by no means would the doxy dose be enough to eradicate the lyme...I also need to be tested for co infections, and then possibly start a three month "pulsing" of antibiotics" (but i need to take a month of probiotics to prepare my gut- so I have written instructions for that now).

he said if i leave it well enough alone, it will likely flare back up, so best to use best efforts to get rid of it now. also, to add in to the mix, we would like to add to our family, so there's a possible pregnancy in the future....and doc wants to get rid of the lyme first. (for the record, I didn't post this before b/c this is all very personal) another note- the second neuro actually encouraged me to get pregnant asap...said pregnancy was actually good for his MS patients (?)

anyway, what to think about this pulsing of antibiotics? any of this? all of this? So much to take in...

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Re: MS or Lyme

Post by jimmylegs » Wed Nov 28, 2018 3:49 pm

i personally have issues with throwing abx at a system without having a very clear (ie lab tested) idea whether the immune system has the tools it needs for proper function. getting a handle on those numbers would be fundamental to anything i would call best efforts to get rid of lyme. i think pregnancy is good for ms in part because expecting moms are on prenatal supplements the whole time and are generally encouraged to take way better care of themselves than the status quo. if you have a look around the forum you should be able to find all kinds of pro-abx-ers to chat with. i can't personally get on board - i think they are abused and we're seeing the consequences with the emergence of superbugs. i wouldn't want be dealing with super-lyme down the road :S eep!
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 » Wed Nov 28, 2018 5:39 pm

what would let me know of I am healthy enough for a round of antibiotics?

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).

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Re: MS or Lyme

Post by jimmylegs » Wed Nov 28, 2018 5:58 pm

hi hopefully a list of specific nutrient tests - nutrients being the tightly interconnected building blocks of all your body's systems, including its ability to fight off viral or bacterial infection, and ideally cut back on the amount of medication required to restore health.

thorough nutrient screening will definitely not be the routine kind stuff done as a matter of course when the doc calls for a CBC test or something like that. i think we've already touched on the ones you've had done and at least a couple of the ones i consider important :) shall we start a list here so they're all in one place vs sprawled across the topic?
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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