How are you guys? How is winter treating you? Or… you’re somewhere in the world lucky enough to have summer now… how is summer treating you? I’m alright. Over tired for sure, but I have been since my pregnancy/miscarriage. I thought for sure it would have passed by now, but the tired-ness is just lingering each day. I’ve procrastinated this health update post for forever now. But a week before heading out abroad for non stop travels seems like the perfect time to update.
I’m pretty sure I actually meant to write a health update post before I got pregnant. Then I didn’t (obviously). Then the pregnancy happened and I hadn’t told people yet, so it felt weird writing a health update and not telling people I was pregnant while writing. Then I was a mess while pregnant. And then I updated you guys on my miscarriage. My miscarriage obviously affected my health, but that wasn’t my every day health… that was one incident in a long (sometimes painful) health recovery process. So I thought I should hold off on a health update a bit longer. You know?
When I first got sick, I was looking for answers, a diagnosis everywhere and anywhere. I found everything from lyme to colitis to auto-immune disease diagnosis, and more. But nothing seemed right. Nothing described everything I was feeling and suffering from. Lyme was the closest answer I had that could describe every symptom. And it tore at my heart. Each and everyone of my symptoms fit in a lyme box, but it still didn’t feel right at the end of the day… because I knew my symptoms had built up for a while before I finally crashed. Not to mention I hadn’t been anywhere near a tick heavy, woodland forest area in god knows how long.
At the end of months of searching, I found myself giving myself my own answer, a reality check that not one doctor was going to help me. And at the end of the day it really didn’t matter what diagnosis I had, I just had to reclaim my health for myself. And so I did. You guys know I switched up my diet massively and I have tried a variety of supplements (and I’m still trying new ones even today), probiotics, and more through out this time. I basically looked to everything in the natural world that I could find that might possibly help me.
Without question, I felt the biggest shift in my health improvements when I switched my diet from high fat/high protein/low carb diet into a high carb (mainly fruit), low fat diet. Within a week, I felt ALIVE again. My brain fog cleared, my energy increased, I felt pretty well for the first time in years.
And this continued. I’ve definitely had some fall backs here and there, but overall I’ve felt a lot better in the past nine months or so than I had in the two sick years prior. I’ll be honest, sometimes I felt crazy at how closely I was monitoring my body, but this gave me answers. And some clues to what my possibly be happening. Timing, triggers, hormones, everything. Paying attention to my body made me realize a lot of things. I dont have all my answers yet, but now I know better to what makes my body crash and what keeps it afloat. Again, it’s been sort of weird since the miscarriage, but I’m not worried, I will figure it out again.
What I know:
C. diff did destroy my gut and made my body crash. There is no doubt about it. Keeping track of the timeline everything, I have no idea when c. diff got in my body, but I do know that it was growing over time.
A few months before India I had major dental work done. I unknowingly had mercury filled fillings removed from my mouth. Followed by two root canals– done and re-done. And then my digestive problems started arising. But I never stopped to think how closely dental issues relate to the rest of our body. That my two teeth with massive problems were in fact connected to my intestines and more.
About a few weeks before India I went to get vaccinated (I shouldn’t have). and my digestive problems turned into more, aches, tiredness, overall exhaustion that I couldn’t explain. I thought I was over-working myself. I knew for sure I was actually. I was living off adrenaline spike after adrenaline spike to get through the day. And then I went to india. And while in India everyone complained a bit about their own gut, so my worsening gut seemed to make sense too… but then when I went home, and everyones stomach returned to normal, mine never got better.
Prior to India I also had the increasing joint pain in my body. I thought it was carpal tunnel, because it made the most sense at the time. I was over working myself with recipe making, blogging, writing a book, editing photos, and more. But things continued to worsen and what once a wrist problem, started spreading to my other limbs.
Looking back it must have been all the excess inflammation in my body. I went to hand doctor, he said I should get a cortisone shot for the inflammation (I shouldn’t have). And then things got even worse. I went to another doctor who said I should consider an antibiotic (I shouldn’t have), and I took it. A few days later was when I really crashed. What had once been a bit of excess exhaustion (I blamed travel) became unbearably worse. I could hardly stand. I was in unbearable pain from my head to my toes, I couldn’t even put my feet on the floor because the pain shooting through them. This is when I started frequenting the doctor even more. Visit after visit, I felt like I was dying. Hell, I was dying. The antibiotic had wiped my gut clean, leaving nothing behind except for the c. diff. And the c. diff was growing and draining everything out of my body. I had lost 15 pounds in two weeks, going down to about 95 pounds.
That is the beginning. I’m not in the end yet. I’m still in the middle. I don’t have all the answers, but I have more than before.
What I know is that my body crashed. What I know is that I shouldn’t have taken the antibiotic, but it wasn’t the antibiotic alone that caused all my problems. It caused my stomach issues, my blood pressure and blood sugar issues, a lot of my brain fog, and it almost killed me, but it did not cause everything that I’m dealing with today. I would have still been sick without the antibiotic and I would have still been sick if the antibiotic was the only thing I had taken.
But it wasn’t the only thing I took. A broad spectrum antibiotic, a cortisone shot, three different vaccines in one sitting, unnecessary dental work with mercury poisoning, and a general lack of self-care is what I gave to my body.
What I know now is that I’ve healed from the damage c.diff caused within my body, but I am also sure that when my body crashed, any virus’ lingering dormant in my body came to life. And outside of my obvious and painful gut issues, this is a lot of what my body has battled the past two and half years or so.
What virus? I’m not exactly sure. But I’ve been able to understand what triggers it. After c. diff/body collapse, I was suffering chronic fevers and inflammation. At least once a week a fever would spike and I would crash.I had a chronic fatigue I couldn’t even describe if I tried. On top of the still lingering joint pains, blood pressure and sugar issues and more. Then as time went by once a week fever spikes and body crashes became by weekly then monthly. And they’ve stayed that way the entire time. About once a month my body crashes. This sucks, obviously. The good news is that the symptoms themselves have gotten better over time.And not each time is awful, sometimes I can still function through the symptoms.
So a health update on the now? My gut is significantly better. I can eat raw foods again, pain is rare in my stomach. Bloating has improved. And TMI, I still get gassy from time to time, but my farts never smell (except when I was pregnant). It’s the weirdest thing in the world. I could wake the house with the sound of my gas, but you could be sitting next to me and never smell a thing, haha. I’ve worked tremendously hard on fixing my gut after c. diff. and with the exception of the few months I spent pregnant, it’s been pretty good. Well, honestly, it’s been weird here in Massachusetts too… but so has Alex’s. We can’t figure out why both our stomachs have been upset here. But still, I can confidently say my stomach has massively healed since c. diff.
So now? I’m working on fixing my once a month virus outbreaks. Once a month, in different varying degrees, my body crashes to some extent. I would best describe this as a shingles/ebv outbreak with no rash. I don’t have the same symptom every month but its at least guaranteed that I’ll get a few of these symptoms: nerve pain on one side of my body (shingles), blurred vision, eye floaters, chronic fatigue, body aches, really bad tinnitus, occasionally a sore throat, gum inflammation weak feeling, mild brain fog, vibrating sensations, and just a general week feeling.
Once. a. month. And I’ve been keeping track of my body for a while now trying to figure it out. I’m embarrassingly sensitive about my body now. I keep track and I notice things others probably would never think to pay attention to. But it helps. I know there is a thin line between over thinking / becoming obsessive about my health and keeping track. And I think I’m on the better end for sure. Before I can say I was probably boarding on obsessive. Now I still do pay attention (a lot of it), but I worry a hell of a lot less.
The main thing that seems to cause this shingles/ebv crash seem to be:
Lack of self-care/ Anxiety: If I over stress myself/under sleep. I cannot in any way function like I used to. I used to thrive on 6 hours of sleep. Now I need at least 8, but 9 to 10 is preferred. And I hate it, trust me I hate it. I used to be one of those people who thought that people who slept more than 7 hours were lazy. Now I need to be one of those people. If my anxiety spikes for any reason, like adrenaline rushes, I can feel the symptoms start to creep up. And so if I’m under sleeping and super stressed and anxious, I have to calm myself the crap down to not let myself crash.
Diet: This is big. And difficult when I travel, but as long as I eat well, I don’t have to worry too much about symptoms. But the moment I start eating things like excessive chocolate, processed sugar, or corn products, boom the symptoms creep in. This is tough when we travel or when we were in Guatemala… the land where chocolate and corn is god. When we’re home its easy for my to make easy meals that I know my body will be fine with… and when we travel, well, I want to eat all the delicious foods. I think that’s why I typically do pretty well with about a week of traveling then the virus’ spikes.
Hormones: This virus thing might mostly be related to my hormones. Typically my body crashes the week I ovulate or a few days before my period. I’m not sure if this is because of a hormone spike/drop or because my immune system drops a bit in the time. But I do know it’s related to these hormonal shifts. And when I was pregnant? Nothing. Not one sign of a virus. I wasn’t taking any of my normal supplements or anything after I got pregnant, and the virus didn’t come back. I know most people claim their auto-immune diseases symptoms subside when they’re pregnant, so I guess this must have something to do with that. I’m not sure. All I know is that something in pregnancy made it stop… and I miss that. A LOT.
Illness: This should be a pretty obvious one, but when the germs are spreading around me and I’m fighting them off, I’m more susceptible to the shingles virus coming back. I’m still pretty good at fighting off germs, so sometimes I don’t get the bug that’s going around but I might get a shingles outbreak regardless. Womp.
And so this is where I’m at.
For the most part, I feel a lot better on my day-to-day. But at some point in this early beginning illness process, something triggered inside my body and now I’m dealing with a chronic virus/disease/whatever you want to call it. My gut is doing pretty well, especially on the low-fat, high fruit and veg diet — which is obviously great. But still, I’m working on fighting off the last piece of this healing process… every single day. Sometimes it feels like it will never get better. But it usually just takes giving myself an extra reminder that I’ve come this far in figuring out everything by myself… and that it’ll just take even more time for this too.
It’s mostly scary and a problem when the virus is actually awake in this body of mine. The chronic fatigue is always unbearable. When the nerve/shingles part happens, Marlowe knows not to hug me and just to give me a bit more space, because if a tough on my side or leg will cause me unbearable pain.
The blurred vision gets really bad sometimes and that undoubtedly scares me. I went to an eye doctor and explained a bit about what was happening and how it seems to flare up from time to time. I went for two visits. One while the virus was spiking and one when it wasn’t. Everything perfectly normal in the time when the virus was low. And when it was attacking? He said that my nerve endings looked “interesting” — that he couldn’t really describe them, but they certainly weren’t normal. Again, no real answers, but clues that something really is happening in there…or changing at least once a month. I just need to figure out the one thing my body is missing or is needing to be removed to finally feel completely better.
I obviously want to figure things out sooner than later. And I hope I will. I know it’s hard for you guys to know whats happening in my day-to-day due to social media. Happy memories and new photos taken in the moments when my body is keeping the virus under control. Old or reused pictures cover up the days when I’m bedridden and in pain. But I am good. Not great, but I am good. And grateful to be good. While my health is not where I’d like it to be now–I have shingles pain creeping on my right side now and I feel I could sleep for another 48 hours, I know it could be worse. I don’t have all the answers and I have A LOT to figure out, but this is better than it was… and for that I am thankful.
ps. on the dengue and brain tumor: I still have no idea if I did contract dengue or not. I’m obviously and forever will be afraid of mosquitos. I get so swollen with on bite anyway! Upcoming tropical travel is nerve-wracking, but still happening. The brain tumor? It’s still in there. I almost never think about it since my last MRI just over tow years ago. I do my best to eat well android foods that feed tumors… and I don’t worry that it’s growing. If it ever does, I’ll worry about it then. Remember: is this useful?
38 Comments
Your posts have been so comforting to me. That sounds awful and I’m so sorry you’ve been unwell but I haven’t related to someone health wise for a long time. I had c-diff about 2 years ago after a bad accident that left me with osteomyleitis and heavy antibiotics administered through a picc for 2 months. I have so many of the same symptoms you do and deal with gut flare ups and chronic fatigue on a regular basis. I’m young too-31, and feel like doctor’s don’t know how to help. It’s so hard to find info on c-diff recovery and I feel like a crazy person to still be so foggy, drained and sick after so much time has passed. My trigger foods always seem to change but I’m slowly starting to figure out which ones always upset me (looking at you fried food and soda). After reading your posts, I think it’s likely I’m deficient in some vitamins. I also have hope that with journaling, I can start sorting this mess out. I’m so grateful to be alive and to be feeling better than I did 2 years ago but it seems it’s a long journey we’re on. If nothing else, I’ve developed a lot of empathy for people with chronic illness. You’ll be in my thoughts and prayers
Thank you for writing this amidst struggling through it. It’s so important for all of us to share our stories, especially when dealing with debilitating mystery illnesses that are very freaking real.
I am going through something very similar, gut stuff and also a viral situation that presents itself once a month without fail. The fatigue is the worst, it’s a nightmare. The latest has been a shingles nerve pain, much like you describe. I just wanted to share in hopes that it helps you, that lemon balm is supposedly super effective at removing the virus and helping with nerve pain. I do the tea, the tincture and I’ve even applied it topically to the areas concerned.
Sending love.
I just ordered lemon balm this week! My biggest relief has come from taking zinc every night. and l-lysene everyday. I’m guaranteed to have an issue if I dont.
I got Lyme from sand flies! It doesn’t have to be transmitted by ticks. I had every single one of your symptoms.
I’m curious how you know you got lyme from sand flies.
I went to the beach on a really cold day fully wrapped up. I sat on the sand and put my hands underneath. Sandflies bit me several times on both hands, then maybe ten days later (it was 4 years ago so can’t remember exactly) I had several bulls eye rashes on my hands
Hey! Have you ever had a hair mineral analysis done? It changed my life, helped me find things out about my body and that I had copper poisoning from my IUD. I recommend it to anyone now to get the test done yearly. After all we’re minerals and water really at the end of the day, if those balances are off it can cause a world of troubles. You can get the test in the mail for $50 and you get a 80+ page book in return all about you. It’s really wonderful.
I haven’t. My college boyfriend messages me about 4 times a year telling me to try it haha. Maybe I should give in and do it. Is there a site or company you recommend? (I can probably just test him and ask him too haha).
Jeez Andrea! What a frustrating journey. I’m glad to read that you feel better now. And I really hope you’ll get better and better. Wishing you lots of love and safe travels ❤️
thank you <3<3
Thanks for the update. It’s so frustrating when you know something is going on, but you don’t know WHAT it is! I’ve been there a few times, with myself and my kiddos and like you drs didn’t help much. I know you said a lot of your symptoms fit for Lyme disease. Have you ever been tested? More than ticks carry Lyme so I definitely wouldn’t rule it out. Some spiders and also mosquitoes can also carry it. It’s good that you’re going with your gut on this tho and aren’t giving up. I hope you find the answers soon and get more relief!
I’ve def done testing. And not just the standard doc testing either— I’ve done the more intense lab work to see and all that came out negative too. Only one or two strains of viral stuff popped up. I do often worry that we’re so worried on the lyme thing that if gets diagnosed for people who def dont have it and have more viral situations coming up. You know, it’s def a concern, even when marlowe plays outside in Massachusetts in Feb, I check her for ticks (when theres no snow on the ground of course haha). But I think the lyme sensitive doctors are maybe too focused and sensitive to it. I dont know.
Wow all I can say is wow, interesting about the Shingles though, my Mom had them in her scalp and eye, would pop-up when under stress same with my Husband had them on the side of his body (they were horrific thought he was loosing his mind) eventually had to see a pain specialist for shots just to get through the day. When he’s under stress (his job they will bother him). Take care while traveling my thoughts and prayers will be with your whole family. <3
Arlene
Came down here see if anyone knew about Shingles- I remember my older cousin having it but I was under the impression it was a one-off virus like chicken pox not a recurring condition like, say, eczema or psoriasis.
ugh its so hard. the pain is seriously unbearable. I get it on one side of my body too. sometimes up my sides, but usually on the leg. Alex and the doctor are both really suggesting I consider medications for when the pain is REALLY bad, but I dont know. This past week was maybe the worst its ever been. I even cried, and I have the highest pain tolerance ever.
I know this isn’t what you want to hear, but I really want to encourage you to get another opinion about the brain tumor. Find a doc you feel you can trust and get it checked out again. All of those symptoms with nerve pain, blurred vision, tinnitus, etc are your body telling you to pay attention! I know it’s not helpful to worry and live your life in fear, but sticking your head in the sand isn’t going to help either!! I hope you can find a happy medium 🙂
I went to a brain specialist in miami and he said that it’s totally fine to wait on it if I see fit. He said if I noticed problems with chewing, swallowing, or smoother weird mouth things, then it could be from the tumor. But not the symptoms I currently have.
This is pretty crazy that you describe a group of symptoms that I get randomly. I get joint pain, body aches, sore throat, ear ache and gums feel inflamed. I also have had IBS for about 6 years. I had a baby five months ago and everything went pretty dormant but it’s coming back. I’ve had it three times in a month. I don’t go to the doctor because I don’t believe they’ll know nor would there be a “fix.”
ugh. sounds identical. I went to the doctor this month andI told him upfront, “honestly, I know I have a lot of strange symptoms and seem like a weird mystery, but I’m not here because I think I’ll get answers. I dont think I will. I’m only hear to appease my husband and mom.” The doctor was super nice and seems like he’s legit trying to put together puzzle pieces, but I just dont think anything will come from it. It always ends up feeling like a discussion of whats happendngand theories it might be but never concluding with anything.
Just curious if you’ve looked into adrenal fatigue? It affects many symptoms-including digestive and hormonal. If you crash around the same time every month (and you felt better during pregnancy-many people take progesterone/pregnenolone to treat adrenal fatigue) that could be one thing you have going on in addition to the other stuff. I know unsolicited advice from strangers can be annoying and you’ve probably already looked into it but for me I find the more suggestions the better when having a hard time navigating foggy medical stuff. I have many of the same symptoms as you (from adrenal fatigue) but no matter what the cause is, I totally understand how difficult it is to have chronic illness that is invisible and difficult to explain to others.
I have! I’m sure I had a bit at some point. Had all the symptoms. But since I switched to a Whole Foods high carb low fat diet most of those symptoms went away 🙂 I stopped needing the mid day naps and the crashing feeling.
Thank you for the update! I am no medical expert by any stretch, but I do try and treat health issues naturally (for myself and my kiddos). A few couple thing I wonder if you have tried that have worked amazingly well for me are chiropractic care and/or acupuncture? Obviously they are “outer” treatments, but when used regularly can have a pretty significant effect on your symptoms. I used to get serious sinus infections – 2-3 per year, always requiring antibiotics – for YEARS until someone suggested acupuncture. After just one treatment, I felt a shift, and within 6 months I was able to give up my prescription nasal sprays, antibiotics and over-the-counter drugs (ibuprofen for pain/swelling mostly). That was over ten years ago and I’ve had ONE sinus infection since, on a trip to rural Mexico of course!
I tried acupuncture for a few months, and I liked it but I couldn’t keep justifying spending so much money when it didn’t seem to be doing that much for me. I went to a Chiro ones and HATED it. I cant even have my knuckles crack, it irks me so much so the having someone crack my bones was awful. For a while I was doing reflexology and that was great— I only stopped because have been traveling so much, but it would be worth it for me to make more time to go while on thread again too. I’m curious to know what points they’ve been focusing on in acupuncture for you.
Hey Drea, I thought what you said in the hormones section was really interesting. From a quick Google search, apparently estrogen and progesterone are high in the first trimester of pregnancy, and they drop in the few days leading up to your period. Since you crash around your period and didn’t have symptoms during your pregnancy, maybe that could play into everything going on? (Apparently levels of those hormones are pretty high during ovulation as well though, so not sure about that part haha.)
yeah it’s tricky. and tricker since basic hormone testing really wont show there is a problem, you know? It’ll just say “within range” or whatever, but no answers. It’s also just weird because I used to feel SUPER hormonal, heavy periods, mood swings, breast tenderness, but all of that has gotten SO MUCH better for me, but this stays 🙁
Phew it’s not easy is it! Have you checked out Anthony William (aka Medical Medium)?
I have! I’ve read his first two books, reading the third one now (even though I dont think I have thyroid problems, but I was curious to read it). I had been following the diet he recommends when I first read his book (the high carb, low fat), and so I’ve added in some of the supplements he recommends. The books seem to explain a good bit but I still dont have any real answers on how to heal, other than keep doing what I’m doing and hope that someday it gets better.
Forgive me, as I am a relatively new follower of your blog (which I love!), but just wondering if you have ever been tested for H. Pylori? It is another bacterial gut infection. I had it a couple of years ago and it affected much more than just my stomach, I was in pain all over and having lots of trouble sleeping, etc. It cleared up after a serious amount of antibiotics (think 8+ pills a day), but I definitely still feel some of the lingering after effects of it.
Hi love, thank you <3<3
I have been tested for H pylori! Thankfully I dont have it. <3
I have Hashimotos and I tend to flare before my period too, or if I’m going to get sick that’s when it happens. :/ still on a long journey of trying to balance my hormones naturally. And the fatigue when I flare is unbelievable. Inflammation fatigue is in a class of its own. Have you thought about trying red light therapy? Or low dose naltrexone? I’m taking that, but I’ve also read a lot about people taking it for chronic pain and it working really well.
ugh, I hate that you’re dealing with it too. I haven’t tried red light therapy. I want one of those red light saunas so bad but I know we have no where to put it at home anyway… not that we’ll home anytime soon. I was prescribed low dose naltrexone, but I was too scared to take it. I know it has minimal side-affects, but the whole possible night terror thing scares me so bad since my dreams are already so intense. How have you been taking it? Any sleep problems? Have you seen health improvements. I’m so curious about it… but nervous too.
Yes I’ve been taking it for a month and a half, they say to give it at least 30 days to start making a big difference so I’m getting my next labs done next week, I’ll let you know if it’s working. I haven’t seen much difference in my sleep, I had dreams that made more sense than normal lol, but I also rarely have bad dreams so I get that. I know that they say you can take it during the day if that’s a side effect. It’s preferable to take it at night, but you could try during the day? I have been feeling pretty good while on it, but for me the blood work is the best marker.
Also, I’d love to buy a red light device eventually, but I’ve been going to a health clinic/spa with a combo light therapy and far infra red sauna about once a week when I can and love that! Regular saunas make me feel drained but I love the far infra red ones, and a lot of them also have the led light therapy as well.
Curious to know if you saw any changes since then? 🙂
So glad to hear an update and that there is progress continually happening! I just had a 10 cm brain tumor removed, so if god forbid yours grows and you do consider surgery. Feel to reach out if you want to hear little about the real experience and not just a doctors words.
oh gosh, thats intense! I’m glad to hear you’re doing okay.. well, I assume you’re okay if you’re able to come here and be so kind and comment! <3<3
I actually have two friends who have had benign brain tumors removed — one of them, twice. So I also can connect you with two really nice people if that ends up being what happens.
Thanks for the update. A LOT has happened. Isn’t it remarkable, how we follow the advice of doctors, but there is an inkling feeling that it’s not the remedy we need?! It’ good to know your own body and give it what it needs. All the best!
thank you Anita! <3