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|Posted By : Mangaka - 3/22/2014 4:49 PM|
I'm new to this forum. I hope you can help me
figure out this health issue I have...
For most of my life, I've just felt like there was
something "wrong" with me. I love writing and drawing, and I remember
when I was quite young, I tried to write a book many times, but it always ended
in me just giving up because I felt confused and numb and depressed. I've always been unnaturally physically weak. I was also
diagnosed with OCD when I was in kindergarten. However, I didn't worry about
these things too much, because I figured that it was "just the way I
Then, in grade 5, I noticed that I was becoming
more emotionally numb, obsessive-compulsive and depressed. I started having
panic attacks in the middle of the night, I experienced stomach bloating, and I
got strange rashes and eczema.
By the time I was in grade 7, I didn't care about
having friends anymore (I couldn't relate to people); I had all sorts of different "rules" I made myself follow;
and I found that after eating certain foods (especially fruit), I felt really
"weird". I went to the doctor to get my blood sugar checked, and it
It was in grade 8 that things started to become
serious. I lost all my friends except one, started dressing sloppily (partially
because I didn't notice what I looked like anymore, and partially because I had
become overly-sensitive to the feel of denim and stretchy shirts), I started
experiencing severe brain fog that made it difficult to read and focus, and I
developed a compulsive exercise routine that prevented me from doing what I
wanted to do with my time. Soon, I started also having
"depersonalization" (feeling that oneself isn't real) and
"derealisation" (feeling that the world isn't real) symptoms. I
became depressed, and I had severe social anxiety.
I entered grade 9, and my stress levels spiked. I
couldn't keep up with my peers. It took me a long time to finish schoolwork, in gym class, and at my locker, even though I was trying
as hard as I could to keep up.
Finally, my stress levels had
gotten too high, and then I learned that I had gained a pound. Although I might
have been able to cope with that if I wasn't so stressed, the minor weight
fluctuation was "the straw that broke the camel's back", and, as a desperate
coping mechanism, I dramatically reduced my caloric intake to lose it off
I lost so much weight that I
ended up in the Eating Disorders Unit at the children’s hospital. There, I told
the staff about my immense fatigue, brain fog, etc., but they told me that
those were just “eating disorder symptoms” and “depression symptoms”. I
believed them when they told me that my symptoms would go away as I gained
weight and did therapy.
Boy, was I wrong! My symptoms
became even WORSE upon entering that program. After gaining all the weight I
needed to become “healthy”, my brain fog, dissociation, OCD, social anxiety, and
depression had become so bad that I ended up on the Psychiatric Unit of the
hospital. Around this time, I even started having delusions. They weren’t able
to help me on that unit, so eventually, they ended up letting me out of the
hospital, forcing me to go to school, because they were simply unable to “cure”
I went to school for a while. I
was paranoid and totally shut off from other people. I began having a tingling
in my head, but my doctor didn’t seem to care much. Eventually I had to stop
going to that school, and I switched to an alternative school, but, at the end
of grade 11, I had to stop going to school entirely—I was too tired,
and my mental/cognitive/emotional symptoms had become too extreme.
Around this time and throughout much of grade 12, a
strange thing started happening. I started to experience fatigue SO severe that
it was hard to walk across a room. My metabolism was sometimes really slow (at its
worst I only needed to eat about 900 calories a day to maintain my weight). I
got so cold I spent much of my day sitting on the floor of my room in front of
my space heater. And, above all, I had this strange, strange sensation in my
body. It was kind of like a “sick” feeling, but it felt insidious and evil—I know
that sounds extreme, but that’s how it felt! I experimented with different
foods and supplements to make the symptoms go away. Certain things helped for a
time, but then my symptoms would come back even as I continued taking the foods/supplements.
The things that helped somewhat include the following:
Sunwarrior Protein Powder
Eating a wider variety of grains (instead of just rice cakes, which is what I used to do)
Leafy Green Vegetables
At this time, I am still very sick. I am in grade 12, but I don't go to school. If I recover soon, I will be able to graduate from high school in June 2015-- a goal of mine! My current symptoms
Severe brain fog
The sensation that my brain is rotting
Inability to properly express myself verbally
Tingling in head
I have gotten many tests to help determine what is wrong
with me. Here is a list of some of my tests to date:
Blood work (fine)
Candida test and stool analysis (I don’t have candida, but I have low levels of probiotics and elastase, a pancreatic enzyme)
Lyme serology (1 time; negative)
Food allergies (none found)
Celiac Disease (negative)
I feel at the end of my rope. I am going to get tested for Leaky Gut Syndrome, which could be a possibility.
Does anyone have any ideas of what could potentially be wrong with me or what I could try doing to feel better? Any musings are appreciated!
Post Edited (Mangaka) : 3/24/2014 9:30:46 AM (GMT-6)
|Posted By : Jasmine Grace - 3/22/2014 6:54 PM|
|Do get tested for leaky gut; it sounds like a good idea.|
Also get tested for Celiac disease: blood test for TTG and IgA, followed by an endoscopy.
Have you seen a Lyme Literate doctor? Lots of Lyme tests can be false negative - meaning a person may have Lyme, but it doesn't show up on the test. Get tested again by Igenex or Infectolab and make sure a Lyme Literate doctor interprets the results.
I suggest you post in a few other sections too - allergies, anxiety, bipolar, celiac, depression, lupus, Lyme. These people may be able to help you more. It doesn't sound like Chronic Fatigue Syndrome to me, unless you also experience a variety of other symptoms that you forgot to mention.
Conditions: Fibromyalgia, chronic fatigue syndrome, chronic pain syndrome, irritable bowel syndrome, food intolerances, complex regional pain syndrome, anxiety, allergies, atopic dermatitis, low immunity, tinnitus, restless legs syndrome, scoliosis, etc.
Goals: to be an occupational therapist; to explore the world.
"Reach for the moon; even if you miss, you will land among the stars."
|Posted By : Mangaka - 3/24/2014 9:29 AM|
|Hi Jasmine Grace,|
Thank you for your reply. I had forgotten to mention that I have gotten tested for Celiac Disease, and I don't eat wheat anymore, even though the test came back negative (I don't eat wheat b/c I've heard that it's unhealthy). I've also gotten tested for food allergies, which also came back negative.
You're right-- I should get re-tested for Lyme. Thanks.
If anyone has any other ideas, I'd like to hear about it, please. I'm looking for all the ideas I can get :)
|Posted By : jkn913 - 3/25/2014 8:17 AM|
|I am so sorry for all you have been through, what a life......|
There are a lot of "foods" that can cause bad reactions that won't show up on a test. A lot of times it is the additives like BHT, coloring, etc. that causes it. There is a foundation called Feingold that discusses how foods can affect us, including causing ADHD, Autism, but they can also cause many, many health problems. I don't know if it would help you or not but it is worth a try. They have a food list to eliminate and then to slowly add other foods back in. They also have food lists that are safe and don't have the chemicals and preservatives. You can find them at feingold.org
|Posted By : Wovenx - 6/23/2014 2:35 PM|
|Mangaka have you been tested for any autoimmune issues? Like hashimoto's? Have you had a FULL thyroid test done? TSH, Free T4, Free T3? Your symptoms are common with various autoimmune issues and or thyroid issues.|
|Posted By : Mangaka - 6/24/2014 9:23 AM|
|Hello Wovenx and everyone else who posted here,|
Thanks for all your ideas. :)
I have, indeed, gotten various thyroid tests done. I've had tests for inflammation (which I think is related to autoimmune conditions), and the doctor who ran the test didn't seem to think there was a problem.
I'd better let you all know what's happened recently-- I've gotten more tests done and it has come to light that I have pretty serious under-methylation issues and gut dysbiosis. It appears that I may have candida after all-- but I'm not sure. I'm working with a professional who knows how to deal with this stuff, so I am very hopeful!
Thanks for your support.
For anyone else reading this who has similar problems to me: you might want to do research into MTHFR genetic mutations, which can cause methylation problems (which, in turn, can cause many different health problems, including chronic fatigue, fibromyalgia, birth defects, stroke, depression, cancer, and more). Just keep getting more tests until you find the answer!
|Posted By : California Cat - 6/24/2014 12:51 PM|
|Hello, and good luck. If you use the Google Custom Search button up just under the top bar and put in a few symptoms at a time you will find people experiencing similar problems. There are people in many different segments coming up when I looked just now. There may be some help that way.
If you get useful ideas from any forum then that is progress.
It's worth a look around. I believe you will find some answers and healing. If you email me I'll tell you a bit about my son's experiences in school. It might be of use, I don't know.
|Posted By : SoSt9 - 6/27/2014 9:03 AM|
|Hi. :) I normally do not post in this forum, but I read yours and wanted to give a couple suggestions. I agree with having a full thyroid panel done (including the free T3 and free T4), but also having full metabolic and rheumatological panels done as well (lots and lost of vials). You should go to a doctor that is not only familiar with how to read the tests, but who will also look beyond the negative tests and consider symptoms as well. The two specialists you need to see are a Rheumatologist and a Endocrinologist. |
I think on the surface, it looks like you have all these psychiatric conditions but no way to solve them with psychiatric medicine. When these do not work, you should look at your other symptoms. It really looks like you either have something metabolic or rheumatologic going on (or both). Good luck.
Frequent lurker, Part time poster.
Known Problems: Sjögren's, Hypermobility, UCTD, Arthritis, Hypothyroid, Migraines, Eye Problems, Skin Issues, Depression, PTSD, Anxiety, Autism (high functioning), and Gastric Bypass Surgery (affects what medicines I can take and for how long).
Suspected: Psoriatric Arthritis, Lupus, Fibromyalgia, Epilepsy, Endolymphatic Hydrops, and whatever they decide next
|Posted By : Mangaka - 7/24/2014 12:03 PM|
Thanks for your suggestions, SoSt9 and California Cat. I had a bit of an argument with my doctor a little while ago, and she finally agreed to send me to an Internal Medicine specialist. She didn't want to send me to a bunch of different specialists because she just thought that my problem is "anorexia", so she didn't want to waste my time and the specialist's time getting "useless" tests performed. I'll just have to be happy that I was able to convince her to send me to the Internist...
Oh, and also, everyone, in case you'd like an update, I've recently tested positive for (chronic) Lyme disease as well. I have an LLND who I'm working with to deal with all that stuff too. Now my list of conditions includes chronic Lyme, methylation defects, gut dysbiosis, and probably mold exposure (which I'm also going to deal with). Whew! I'm not doing better yet, but it's great that I'm finally discovering what is making me sick, so that now I'll be able to deal with it.
|Posted By : Ris24 - 7/26/2014 8:00 PM|
|You have been through so much! I am sorry you have had to face these issues. You sound like you are on the right track. I myself had been diagnosed with chronic fatigue back in 97. I had many of the symptoms you talk about in your posts. I seemed great for such a long time but recently have had mental fog, fatigue, heartburn, itchy throat and ears, burning eyes at times, heart pounding and feeling like I am so jittery but so tired. I went to an allergist back when I was diagnosed with chronic fatigue and they said I was allergic to molds, dust mites, and sensitivity to yeast. I also had a food allergy test done and it said I was allergic to so many foods. Weird because for years I have felt fine and now having all these problems again. What type of I internist did you go to. I was thinking of going to an Internest that specializes in infectious disease. Also, how did you know you had mold exposure or what makes you think that? I like you am very frustrated and just wanting to feel better. |
Ps. All my symptoms started acting up again after 3 rounds of amoxicillin. I had a couple symptoms that would flare up e dry now and then but everything started to flare after the meds. Also do you try to eat a yeast free diet?
|Posted By : chloe24 - 7/27/2014 8:37 AM|
|Ris24, you need to find a doctor who is Lyme literate, otherwise you'll get nowhere and end up running in circles.|
|Posted By : Mangaka - 7/27/2014 9:11 AM|
|Thank you so much for your kind words, Ris24.|
I won't be able to see the Internist until October, but she works at the hospital in the General Internal Medicine department. I don't think she specializes in any particular area of internal medicine.
I think that chloe24 is right: if you think you have Lyme Disease, it is important to see a Lyme-literate doctor/naturopath, since a lot of doctors don't know how to deal with or even diagnose chronic Lyme disease. I have learned from my personal experience, however (and I'm sure you are aware of this, too), that it's always helpful to explore multiple different aspects of health simultaneously, so it's great that you're doing that.
We recently had a mycologist (mould specialist) come to our house and inspect the "mould situation", which we've known about for a long time but never acted upon before. The results of his testing showed that the mould spore content in the air of my room was high, and there's lots of mould in the house in general. I didn't get a medical test done on me to test for mould, but common sense tells me that the mould has obviously had some sort of impact on my health, since I'm so sick, and things started to get noticeably bad a few years after we moved into our current house.
Right now I'm eating a fruit-free, refined-sugar-free, yeast-free diet. It has helped reduce symptoms, but I don't plan to cut out fruit long-term, since it's a healthy food if one can tolerate it.
I hope you feel better soon, too. :)
|Posted By : mishell - 7/31/2014 11:02 AM|
|Hi, I'm sorry that you are sick, but I'm happy that you are finding some answers. I have CFS and also have tingling in my head. I was just diagnosed at Mayo last week, so I'm not sure why I have it or what to do about it...but I thought I'd let you know you're not alone. Hang in there kiddo!!|
Best of luck to you!
|Posted By : Ris24 - 8/1/2014 6:58 AM|
|Do any of you work? I'm just asking because back in @7 when I was diagnosed with chronic fatigue syndrome, I didn't work for a year. My body was so out of whack and I had very little energy. I am having all the same symptoms again but worse. Also I feel like I am having panic attacks every morning when I wake up. Do any of you have this. My adrenalin feels like it is running through my body. Once I get up I am so exhausted and shaky. I feel like the doctors think I'm crazy. I don't know what kind of doctor to see.|
|Posted By : Pixie08 - 8/3/2014 5:54 PM|
|hi people i'm new to this kinda chat ( i have only used paltalk and its really different ) so as i dont know what i m doing i might need a little help. anyway i m here cause i have fibromyliga and chronic fatiuge sym. and i just wanted to talk to people who understand what thats like.sooooo, how does this work?|
|Posted By : California Cat - 8/6/2014 3:36 PM|
| I feel I can suggest looking closely at the Lyme chat now, since your test came back positive. Also, for the situation of symptoms flaring after Amoxicillin look up Herx reaction or Herxheimer reaction, especially within the Lyme chat.
As for how to use the forums Pixie, , go to Forum Rules - top right corner below the lower dark blue bar at the top of the page. Follow that? ( There is a dark blue bar starting with LOG OFF then MY PROFILE then to the right end it says HOME and CALENDAR etc. Beneath that it says FORUM RULES.) That should give you most of what you need to know. Within each condition there are more guidelines. Lyme has recently asked us not to suggest Lyme to people in other forums because it can be offensive if handled in a way that implies their ailment/diagnosis is not real. That's something anyone with Lyme experience should be sympathetic with!
Best of luck to all of us getting the right treatments and better health!
|Posted By : Wovenx - 9/28/2014 3:44 PM|
|Hello mangaka, did you do igenex for the lyme test? If so what were your band results? And who and how did they dx you with chronic lyme? Bands and symptoms? I also have mthfr, hashimoto ( you need your tgab and tpo antibodies checked) as well as, what I'm being told, is a posative lyme test - igenex - which can be a bit confusing. Most of my symptoms are neuro.|
|Posted By : Sleepyhead53 - 11/9/2014 7:27 PM|
|Hi mangaka, definitely sounds like neuro lyme. I have had chronic lyme for 27 years. Your symptoms are identical to mine. My fatigue is off the charts lately too. You also are the first person to describe the tingly head. Yes, I have that too. The top of my head tingles like my hair is in an electrical outlet. Very strange. I am sorry I don't have any advice for you, as I am barely surviving at the moment.|
|Posted By : aphysicalwreck - 1/13/2015 11:59 AM|
|I have tingling on the top of my head and sometimes my entire head. I have Lyme. This is a symptoms that I feel will never go away. Don't really know what to do. I have tried many things. I am at my wits end with the disease.|
|Posted By : ptl4now - 2/22/2015 1:04 PM|
|You can test negative for celiac disease, yet still be sensitive enough to gluten that it affects you. I tested negative, yet I want to try a gluten free diet to see if it helps. My meds, however, have a lot of gluten in them, and so I would need a week or two with no meds to try it out. The thing is, i need my meds to function. So i have to find a week or two period where I don't need to function to test this out for me. Also, I drink a lot of aspertame. I need to drink something else to see if I have aspertame poisooning.....I hear many are diagnosed with fibro and cfs, but when they get off the aspertame, they are good as new!!! I hope you find some answers!!|
|Posted By : magoo2 - 6/8/2015 9:51 PM|
|Wow you have been sick for quite some time and good for you for trying to fix it. |
the body heals
The two things most docs simply don't look at
is parasites and dental. The key is to find an md
that searches for both parasite and dental issues has part of
their practice. I wouldn't waste much time asking docs
who don't check this several times a week-just based of my experience.
Good luck there is always an answer or answers
|Posted By : healerme - 6/19/2015 1:36 PM|
What stood out in your post to me was your emotional numbness and actually using the word depersonalisation. I used to feel like this, like I was not significant, in fact I didn't even feel visible. When we feel numb like this we are sort of divided from ourselves and this can cause chaos in our bodies. Our energy needs to have vibrancy in all the areas of ourselves and to flow in order to be healthy and feel good. I've had chronic fatigue and a thyroid condition and by letting the answers unravel themselves to me I have got better. The heart is central in healing. Start by asking yourself how it feels to mangaka's heart. You will find that once you open your heart your healing journey may really begin. I'm sorry if this sounds simplistci. I know how hard some of this is. Its all I can think of to say in this small box!
Inspirational, insightful but most of all real!
|Posted By : Blissy10 - 7/15/2016 9:48 AM|
|Hi...My brother has mild Asperger's syndrome and had terrible OCD and skin sensitivity to clothing, etc. Not saying that's what going on with you at all, but has the Autism spectrum been looked at at all during your diagnosis process? My brother's story is very similar to yours, and he suffered greatly. He had a lot of the same symptoms as you do and a myriad of digestive problems. I had CFS since I was 15, and we were told that Aspergers may be related to autoimmune issues that run in families such as RA. He is also extremely intelligent (Genius IQ) and creative, which in and of itself can be very isolating. You sound very bright as well. I am 54 and high school was an extremely hard time in my life because of chronic illness and depression as well. But it does get better, you just need to hang in there. But you deserve answers, and I hope they come up with some for you asap.|
Post Edited (Blissy10) : 7/15/2016 9:53:25 AM (GMT-6)
|Posted By : Ljtibby - 7/19/2017 8:53 PM|
|It's black mold as the problem. If you can afford to fix the problem do so. Otherwise move. |
Mold has the ability to break down DNA and disable your immune system with ongoing exposure.
Don't believe...don't go to your house for a week. Go somewhere that is sure to have good air quality, no foods that need or grow mold...cheeses, peanuts etc.
You will see you brain fog clear up as your body has a chance to remove some of the mold. Unfortunately as far as I know there is permenant damage with extended mold exposure.