Lemons 'n Lyme

When life gives you lemons, use them to beat Lyme


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Why I DON’T Eat Bone Broth to Heal my Gut

I don’t eat bone broth, fermented foods, collagen, or take glutamine or folate/5-MTHF supplements. WHAT?! Many of you may be surprised given that bone broth, fermented foods, and glutamine are very popular in both the gut healing arena and chronic illness world. Folate (or 5-MTHF, methylfolate supplement) has also been hyped up a lot recently as a helpful supplement to combat mutations on the MTHFR gene and it’s sister genes.

I’ve never liked bone broth or fermented foods and both have always bothered my stomach rather then helped it. I kept trying to eat those foods because everyone said I should to heal my gut. I’d force bone broth down and attempt bites at sauerkraut on occasion. I then started added hydrolyzed collagen to my smoothies, baked goods, or tea. It never felt right and it certainly didn’t make me feel good.

Then, the other week, I had my genetics properly and thoroughly analyzed by a nutrigenomics specialist and some serious light was shed! I should always know to go with my gut because it has yet to let me down…

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Woah woah woah, let’s back up a little, shall we? Let me drop some knowledge. This is about to get a bit scientific, but I’m going to try and keep it as simple and straightforward as I can. There are four similar sounding words I need you to keep straight first. They are:

Glutamine

Glutamate

Glutamic acid

Glutathione

Glutamate is essentially the same thing as glutamic acid, for your reference and the purpose of this post, so in this post I’ll just be using the word glutamate. Glutamine is a PRE-CURSOR to glutamate. Let’s just worry about remembering those two for now, glutamine vs glutamate, okay? And glutathione is an anti-oxidant that helps with detoxification and inflammation. Many of you probably already know what glutathione is.

Glutamate is a neurotransmitter. An excitatory one. It’s VERY important for proper brain function and isn’t something to hate on… unless in excess. Glutamate is also praised for it’s ability to help with healing in the body, including the gut. Glutamate is the pre-cursor to GABA which is an inhibitory neurotransmitter. GABA can then be recycled to glutamate. Essentially, glutamate and GABA balance each other out (one excites, one calms). Imbalances in the body (due to many things, which we will get into in a moment) can cause imbalances in glutamate vs. GABA, leading to high glutamate levels.

High glutamate levels can cause a number of issues from neurological disorders, aversions to certain clothing (fabrics and feels), paranoia, chronic fatigue, and more. Although glutamine helps produce glutathione, increased glutamate can put a demand on glutathione, reducing glutathione levels in the body which in turn increases inflammation. Sounds fun, huh?

Ever heard of glutamate? Probably, it’s a supplement, it’s found in foods, and it’s the component of MSG. MSG= monosodium GLUTAMATE. Many processed foods contain free glutamate. Many health foods contain bound glutamate because it is an essential amino acid. We do need it for our health! Bound glutamate tends to be good because your body is able to digest it slowly and use it properly. We need all 20 amino acids (proteins) in our diet and in meals (meat contains all 20, vegans need to eat rice WITH beans to get them all at once), but consuming just one, and in excess, can cause a lot of issues. Gluten and casein also contain high levels of glutamate, another reason to cut gluten and dairy from your diet.

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Well, glutamine is a pre-cursor to glutamate, like we mentioned above. We all know how bad MSG and other processed foods are (is it now making sense why MSG has been linked to neurological disorders?). But, you probably didn’t know glutamine supplements and natural, even healthy, foods high in glutamine or glutamate can cause issues. So what foods are high in glutamine? Bone broth, fermented foods, collagen supplements… 3 foods that are all the rage in the paleo and gut healing community! Many doctors also prescribe glutamine supplements on top of all that for gut healing, not surprisingly given what I said above about it’s ability to convert to glutamate and accelerate healing. I AM NOT SAYING THESE FOODS ARE BAD! But in excess and for those susceptible to glutamate issues, they are. My genetics make me highly susceptible to glutamate uptake and not recycling it into GABA properly.

Like I said, glutamine rich foods and supplements are popular in the gut healing community, but if you have leaky gut then this allows glutamine to leak into the blood stream, cross the blood-brain barrier, and turn into glutamate… uhh?! You’re essentially just dumping this excitatory neurotransmitter into your poor little brain and it soon becomes toxic leading to all the negative consequences I mentioned above. That’s a real problem isn’t it?

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So how does folate fit into this mix? Folate, also known as B-9, can increase glutamate and it also helps convert another amino acid into glutamate. So, you’re taking a folate or 5-MTHF supplement to help with your MTHFR mutation, you’re downing bone broth and fermented foods to help heal your gut, and maybe you added a glutamine supplement to it all, as well. All of this increases the pool of FREE GLUTAMATE in your body. Ay carumba! Are you feeling like crap yet?

One more thing about folate and glutamate, both stimulate mTOR. mTOR is the process in your body that creates new cells while autophagy is the cleaning up of old, dead or bad cells (including viral cells, bad bacteria, etc). These phases can’t be on at the same time. Either mTOR is on or autophagy is on. If mTOR is constantly on, then your body isn’t cleaning up any of the bad guys and your left with all those viral, bacterial, and dead cells sitting in your system! Talk about NOT healing…

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Are you taking all the steps you think you’re supposed to be taking to help heal your gut and body yet still feeling bad or even worse? This could be why. Especially the folate supplementation issue. Many doctors see MTHFR, MTRR or another sister mutation and immediately think METHYLFOLATE SUPPLEMENT NOW! Without looking at or knowing about other genetic issues a person may have that don’t allow them to use folate properly. That’s my issue, but I’m not going to get into all the genetic mutation issues related to folate in this post. I’m just going to leave things where they are for now and hopefully you’ll take my word on it (I mean don’t, do your research, but for now know that I have ;)). And don’t blame your doctor right away, genetics are very complicated and much of this is just coming to light.

I think this is a very important topic to share about given the popularity of the foods and supplements mentioned in this post and the lengths many of us go to find healing. Healing, especially for those chronically ill with something like Lyme disease, can be EXTREMELY complex. I know I just added another layer to the onion, but your genetics play a paramount role in both your illness and health. They aren’t something to be ignored. Yes, we can actually alter gene expression but you need to know what genetic issues your dealing with first to either have your genes express in a positive manner or know how to compensate for the bad ones.

Be sure to talk with your doctor or a trained genetic specialist (I suggest a nutrigenomics specialist who understands all the genes related to gut and detox) to find out what genetic issues you may be having and how to address them. Remember, I am not a doctor. I am simply sharing my experience and knowledge that I gain along my healing journey.

 

 

Sources

My knowledge from biochemistry classes in college

My nutrigenomics specialist

http://www.jstor.org/stable/pdf/2882673.pdf?seq=1#page_scan_tab_contents

https://www.ncbi.nlm.nih.gov/pubmed/12481981

https://metabolichealing.com/glutamate-excitotoxicity-the-brain-the-nervous-system-nutritional-solutions/

https://chriskresser.com/beyond-msg-could-hidden-sources-of-glutamate-be-harming-your-health/

https://www.healthrising.org/blog/2013/02/15/glutamate-one-more-piece-in-the-chronic-fatigue-syndrome-mecfs-puzzle-the-neuroinflammatory-series-pt-ii/

http://science.sciencemag.org/content/276/5319/1699

http://digitalcommons.wayne.edu/oa_theses/388/

 

 

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Guest Post: Managing Graduate School with a Chronic Illness

A couple of weeks ago I read an article on Thought Catalog written by a girl named Dani. She also has Chronic Lyme disease. We connected on Instagram (@dani_fusaro) and I discovered she was just finishing up her doctorate in physical therapy… just as I’m about to start mine this fall. Of course, I had to reach out to her because 1) #LymiesUnite! and 2) She had managed to get through the graduate program I was about to dive into, while being sick!

We’ve ended up becoming friends and she was kind enough to share all her top tips for managing graduate school while dealing with a chronic illness. She then agreed we could make the tips into a post for my blog. Although her tips are from the perspective of a physical therapy student, I think they are quite applicable for most graduate students and even undergrad. I hope to write a follow up post with any additional tips once I get through the program in a few years and you all are calling me Dr. Victoria :).

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Tips for Managing Graduate School while Dealing with a Chronic Illness 

Dani Fusaro

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No matter what, you and your symptoms ALWAYS come first. You have to prioritize your schedule to suit your needs. Everything from meal prep, resting, studying, etc. I did the majority of studying from my bed because making it through class was just about all I had energy for. If you can’t take care of your health, you won’t be able to do anything else.

1) First thing – and worst thing – if you got into PT school, that means you’re a great student and are used to doing well in school. Unfortunately, you’re going to have to adjust your expectations. You most likely will not be a 4.0 or even 3.5 GPA student. It’s too hard to balance symptoms and be able to do that well. It takes time to get used to it, but you have to adjust to the fact that you just won’t do as well as you probably have done in the past. You have to do what you need to do to pass your classes and maintain the minimum GPA to stay in your program.

You have to figure out which information is the most important to know and which information you don’t need to know right now. Essentially, you have to prioritize your studying so that you learn what you need to do well enough on an exam and nothing more than that. Otherwise you’ll get too tired and you won’t remember anything. This takes some time to figure out and, of course, it varies by professor, but it’s a very important skill to have.

2) This may or may not work for some, depending on the program, but figure out early on which classes you can get away with skipping if needed. my PT program had 61 students so it was fairly easy to miss a lecture here and there when I needed to rest instead. Do your best to never miss labs, though.  That’s the practical stuff so you shouldn’t miss it. It’s much harder to learn afterwards if you aren’t there for your professors to teach you.

3) Don’t be afraid to contact your professors and inform them of your situation. Explain what you have, how it effects you, and what you’re doing about it or what you would like/need from them. I basically gave them an overview of my biggest symptoms, I told them that sometimes I won’t be able to make it to class or assignments could be late because symptoms can change within the hour. And at the end of it, I said that I was going to do my best to do as well as possible in the class and I would make up any missed material / attend office hours if I had to miss class. This was honestly the best thing I ever did. My professors wouldn’t mark me down for participation when I needed to miss class, and it took away a lot of the stress and guilt for doing so. Professors in PT (and most health programs) are naturally going to be more compassionate, so I think that definitely helps. I’d talk to them during really tough times and they’d help me manage things so I could be as successful as possible. Also, I made sure they never thought I would take advantage of their kindness. They often offered to let me take an exam late, send in an assignment late, etc. but I rarely did that. Getting the offers is also really nice for stress levels when studying.

*Note from Victoria- in undergrad I would let all my professors know about my situation at the beginning of the semester. This way they didn’t think I was slacking if I had to miss class or asked to turn in an assignment late last minute. Also, based on others I’ve talked to in PT and other graduate programs, professors want you to succeed. They know you came to graduate school on your own will to advance your career and life, so they want to work with you.

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4) Friends are another key. One of my friends would take notes similarly to how I take them. He understood my illness and would send me the lecture notes any time I missed class. Friends are also great for study guides, ask them for them if they’re willing to help you. Basically, find at least one person in your class who you can trust and is willing to help you out.

5) I also suggest not participating in anything outside of graduate school. I didn’t work, I didn’t volunteer, I didn’t do anything besides go to class and go home. Go out and be social with friends when you can – you will be an insane person if you don’t, but try not to push yourself. On really sick days, ask a friend to help you get out of the house to perk you up or get some studying done. If you can find even just one friend who can help carry you through, it’ll help enormously.

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6) It can be hard to keep up with proper diet when school gets stressful because you’re just too tired to cook / any energy you have needs to go towards studying. To get around that, order food when needed and always keep your freezer/fridge/cupboards stocked in case of “emergencies”. There was this special vegan, gluten-free pizza I loved, so I always made sure I had at least two in the freezer. Batch cook so that you can keep leftovers in the freezer. I would also have some gluten-free frozen meals I could eat if necessary. I don’t like doing that but sometimes you just get too sick. There was also this restaurant near me that made amazing food completely on diet – so I’d order two or three things and not have to worry for a few days. Try and find a diet compliant restaurant near you that you can order from when necessary.

7) Detox is also very important, for your health and for sanity, while in graduate school. Take epsom salt baths or saunas. Bring your notes/flash cards into the tub to study while detoxing, if you can. Use things like aka-seltzer gold or binders (activated charcoal, chlorella) for herxes or bad days. Tinctures like burbur and pinella by nutramedix are also great for helping with detox. Detoxing can help keep you stable enough to study or clear some brain fog so that you can study.

Essentially the entire process is sorting out your priorities/schedule to exactly what you need at that time. You have to be selfish and always put yourself first. Taking care of yourself is the only way you’ll be able to manage school without completely destroying your body and be able to come out on the other side.


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Toxin-Free Mattress Review: Tuft & Needle

Last fall I was in need of a new mattress. A new non-toxic one. But it also needed to be affordable because well, Lyme costs a lot of money! So I needed an affordable, new, non-toxic mattress. I did a lot of research and there are some great non-toxic and organic mattresses out there… but at a much heftier cost. So, I ended up getting one from Tuft & Needle.

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They’ve designed their own adaptive foam aimed at being breathable and heat wicking. The mattresses are made in the USA and certified by 3rd party CertiPUR-US (you can review the details of that certification online).

I’m going to provide a review of this mattress based on 6 things: cost, customer service, toxicity, comfort, support of mattress, overall rating. I’ll be rating each category out of 5 (1 being the worst, 5 being the best).

Cost: 4/5

Let’s get right down to it. I got a full size mattress and it cost about $500. Yes, you read that right. What a great deal for a mattress in general let alone a non-toxic, American made one! Of course, things could always be cheaper so it’s hard for me to give something a 5 but you get my point ;). You can review all the pricing on their website but the most expensive mattress is the California King for $750 (again, you read that right).

Customer Service: 5/5

Tuft & Needle’s customer service is ON POINT. When you go to their website there is a chat option right there to get answers from A REAL PERSON (no robot!) almost immediately. I used that when I was first reviewing mattresses. The person provided links to their certifications and other pages on their website that would be helpful for answering my questions and they were very friendly.

Once you decide to order and put your order in, someone from their team emails you with details of your order and to find out if you have any questions. They stay in touch for a bit to make sure you like your new mattress and remind you how long you have until your 100-day sleep trial is up (more info below). AND if you have ANY issues you can email them and they reply quickly and thoroughly. They work very hard to make sure you’re happy with your purchase.

The delivery was quick (arrives in 2-5 days). The mattress comes in a box that you open, unroll the mattress, and it expands (it was air sealed). They have a 100 night sleep trial, so if you don’t like it you can get your money back within those first 100 nights (if you order from them directly, it’s only 30 days through Amazon). They also have a 10-year warranty.

I had an issue towards the end of my trial period, they helped me immediately and extended my trial period because of the situation. That is how accommodating they are. So props for customer service T&N!

The only thing to note is that the mattress is ordered online. They have a couple stores where you can test the mattress out but otherwise you are sort of ordering blind. That’s why I’m providing this review and why they have a 100-day trial period.

Toxicity: 4/5

I’m not going to go into major detail on this because you can review all the details online but they are CertiPUR-US certified, which is a 3rd party green certification. They’ve designed and use their own foam that isn’t filled or lined with your typical fire-retardant chemicals and other chemicals in normal mattresses.

I opened the mattress in a separate room and let it air out for a few days for any potential off-gassing. The off-gassing is minimal since the mattress is non-toxic but it is a NEW product so I wanted to be safe since I’m highly sensitive. After off-gassing for a few days, I slept on it fine with no negative effects from off-gassing.

Comfort: 3/5

I’m the type of person who likes a nice fluffy pillow to sleep on. I prefer softer, fluffier mattresses and I’ve always hated memory foam. BUT I decided to give this one a try since all the non-toxic mattresses seemed to be foam (or cost a bazillion dollars). This mattress does feel memory foam-esque TO ME, although not quite as conforming and stiff. Although many reviewers say otherwise, remember this is my personal opinion and review.

I expressed my concern to T&N and they immediately shipped me one of their toppers FREE of charge (hello customer service!!!). Their topper is made of their foam to add an extra layer between you and the base layer of the mattress, which is harder. I found the topper SUPER comfortable but for some reason seemed to react to it on a chemical level. I’m not sure why as I off-gassed it and it’s made of the same material as the mattress, but that’s the case. So, unfortunately, I had to remove the topper.

Although T&N claims their mattress is heat wicking, I find otherwise. The mattress feels quite hot to me and I usually have to sleep with my fan on to keep myself cool.

I have to say, it’s not the most comfortable mattress I’ve ever been on but it’s certainly not the worst. I’m quite picky so that plays into things. I wish it was softer/fluffier and slept cold but I’m happy with the low-toxicity and safety of the mattress.

Support: 3/5

I know lots of people are super concerned about the support a mattress offers as to keep pressure points, bed sores, and pain at bay. I guess since I’m 26, I’m not super concerned with that. So take this part of the review with a grain of salt (and research other reviews if this is an important issue for you). Since the mattress feels harder for me then I would like, I don’t feel like my body sinks into it as much as I want and therefore doesn’t feel as supportive. I know that may seem weird to some, because if you sink you aren’t getting support, but what I’m saying is if you lay on a hard floor, you aren’t getting any support! Not to say this mattress is like a board, far from it, I was just trying to make my point ;). Hopefully I did and that makes sense (feel free to leave a comment if you need me to clarify).

It just doesn’t feel quite as supportive on my hips and back as I would want and I occasionally wake up with a sore lower back (which could be a result of Lyme and not the mattress).

Overall Review: 3-3.5/5

I’m sure there are some better mattresses out there that are organic, non-toxic, and beyond comfortable but they also cost wayyyy more. So overall, for the quality of this mattress and the price, I’d say it’s a pretty darn good deal!

It took me a few months to really get comfortable with the mattress, and T&N will tell you that. You have to wear it in a little (for most it’s only about 30 days) and let it adjust to your body since it is foam. But if you are looking for something non-toxic and affordable, T&N is a good option.

I reviewed other non-toxic mattresses around the same price-point and although those looked good, too, T&N seemed more well known, with more reviews, and I ultimately just had to make a decision.

I hope this review was helpful for you if you are in the market for a new, non-toxic mattress. Let me know if you have any questions below and I’ll be happy to answer what I can!


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I Need Your Help! 

 I’m working on an awesome compilation video to post on YouTube for Lyme disease awareness month in May and I need your help!
“What has being chronically or severely ill taught you?” I want to keep this positive so answers like it’s taught me to be more patient or it’s taught me to listen to my body etc are great. Answers like it’s taught me how much our medical community sucks ARE NOT what I’m looking for. What has being ill PERSONALLY taught or helped you with/understand? What’s been the silver lining?
You’ll record yourself answering this question in under one minute (so rehearse before and don’t be afraid of needing a few takes) and then email it to me at lemonsnlyme@outlook.com. Include your first name, age, and location in the email (okay to omit if not comfortable sharing) so I can share that in the video during your segment 
If recording on your phone make sure you record with the camera/phone horizontally
I need your submissions by April 19 (earlier the better). And please help me spread the word. Tell your other lyme friends, share on fb groups, and more. I’d love a diverse group of people and answers!
Thanks so much for your help 😄💚


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Valentine’s Day Beet Fudge (AIP/Vegan)

img_8917Here’s a healthy alternative to the usual chocolate and sweets overload that many of us experience on Valentine’s Day. Whether you spending it stag, with friends, or with a significant other, this is an easy and and tummy-friendly recipe!

The recipe calls for a secret ingredient- beets! What, vegetables in my dessert?! Yes! Beets are naturally quite sweet so they play perfectly into many dessert recipes. Beets are loaded with vitamin C, folate, betaine for inflammation. They increase nitric oxide which can help with exercise and brain function (my senior thesis in college was actually all about beet juice and exercise!) and they also contain nutrients to help your heart, immune system, detox systems, and boost iron levels. Talk about a super food!

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Valentine’s Day Beet Fudge 

Ingredients:

1 medium-large beet, cooked* and chopped (about 3/4-1 cup)

1/2 cup fresh cut strawberries or raspberries

1/2 cup melted coconut butter

2 tbs. melted coconut oil

2 tbs. maple syrup (you can add more for increased sweetness)

1 tsp. vanilla extract

chocolate chips (optional)

shredded coconut (optional)

*Cook your beets however you like- boil, steam, bake. My favorite way is to wrap them in tinfoil (skin on), poke a few holes and cook at 450F for 1-1/5 hours, until soft when pierced with a fork. Let cool slightly and the skin should peel right off.

Blend all ingredients together in a blender or food processor, except the chocolate chips and coconut. If you have fudge molds, you can pour batter into there OR spread out on a parchment lined baking sheet or dish. Since it’s fudge, you can make it as thin or thick as you like, I suggest somewhere between 1/4-1 inch thick.

Sprinkle your toppings on, pressing them slightly into the fudge to make sure they stick.

Freeze for at least 2 hours before cutting or breaking up into desired shapes and sizes. Serve immediately (this melts fast) or keep stored in the freezer.

Alternatively, you can melt chocolate and drizzle it on top of fudge pieces when ready to serve.

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Tips For Organizing All Your Medications and Supplements

I just posted a video on YouTube today with my top tips for organizing all the medications, supplements, tinctures, this, that, and the other that you might be taking if you have a chronic illness like Lyme disease.

I hope you find some of these tips helpful and let me know in the comments your best tips for organizing!

I’ve become a fan of YouTube in recent months and have been posting more Lyme related videos there while focusing on recipes on my blog. How are you all feeling about this? Do you miss posts about Lyme and treatment updates here? What format do you prefer (videos vs. writing)? I’ll continue to use all social media platforms from Instagram to Facebook to YouTube and of course this blog, but it would be nice to know what you all like best :).