Still can't figure out what's wrong with me... any advice welcome.

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Regular Member

Date Joined Jul 2012
Total Posts : 302
   Posted 2/23/2013 4:36 PM (GMT -6)   
I'm about to turn 22, and my problems started right after I turned 21. Started with some spells of fatigue and nausea, then in April I came down with some kind of viral infection... might have been coxsackie because I had a lot of chest/rib inflammation but I never figured out what it was. Recovered and felt pretty good for two weeks, then in the middle of May I started getting the dizzy/fatigued/nauseous spells telling me I was getting sick again, and then I got what I thought was a stomach virus but it never fully went away. For a while I was waking up every morning and vomiting like a pregnant woman, and I could barely eat anything. But I did have good days where I felt pretty good. The symptoms were really off and on. I was also constantly lightheaded/dizzy, and had some weird symptoms like hair loss and slight weakness in the left side of my body. I also had a lot of gas and bloating and would belch all the time. I had heart palpitations and anxiety, and headaches a few times a month. Finally, I started noticing that I had to eat at least every two hours or I would get really lightheaded, and because I was nauseous a lot I had to force myself to eat.
So that's how I felt from May to September with gradual improvement. In October, November, and December I felt better but hit a plateau. The main symptoms that lingered were the off and on lightheadedness, needing to eat frequently, on and off nausea, and gas pains. Then in January I started getting slightly worse... more stomach issues than I'd had in the last couple months, more lightheaded feelings, couldn't go as long without eating, etc. February has been horrible. Fatigue, nausea, feeling like my blood sugar is crashing even though it's normal, headaches, lightheaded, and more. The past few days I have been feeling weak and lethargic like I'm coming down with some kind of viral infection even though I don't think I am. Got out of the shower last night and my legs and arms were weak and shaky.

I have been tested for HIV, hepatitis C, had a CBC with differential, complete chemical profile, lyme disease test, gluten intolerance test, thyroid (was borderline hyperthyroid but had no antibodies), ANA antibodies, and more. Does anyone have any other ideas?

Regular Member

Date Joined Jul 2012
Total Posts : 335
   Posted 2/28/2013 3:09 AM (GMT -6)   
Welcome to our Forum, it certainly sounds like CFS, lots of symptoms, no diseases, diagnosis', rhyme or reason. You've also run the testing gamut and that's good except for gluten, as you will read a ;lot, the gluten tests are wrong something like 80% of the time. Makes me wonder why they keep using them, but as they don't treat gluten allergies anymore than they treat CFS, I guess it makes them feel like they are doing something for us. A lot of your symptoms sound like gluten/wheat/dairy allergies, which i also have. Its not the whole CFS issue unfortunately but a whole lot of seem to have this in one way or another. I would say you could try going g-w-d free and see if it helps, it can't hurt its something you can do to treat you which you'll be doing a lot of if you do have CFS since as soon as you get a diagnosis your dr.'s become useless and most of them will act like you either aren't sick or have the plague. I'm sorry I sound so negative I'm having a frustrated at the world because i'm sick day but I'll get over it, I also apologize for not getting back to you sooner I didn't get out of bed except for medicine and once for food for 48 hrs so I'm a little behind. I hope you will Keep In Touch, we need as much information and opinions as we can get.
Crainiotomy Lg. Meningioma Dec.02, Bi-Polar 2004, SMI 06, Gluten/Wheat/Dairy Intolerance, IBS 06, Migraines w/pseudo-seizures 07, Dev. Septum Sur. Sept.07, 2nd Men./Tumor Gamma Knife Rad. Dec.08, Radical Hysterectomy Sept.09 w/instant Menopause, Fibromyalgia 09, Disability since 09, EBV/CFS 11,Vomiting/Multiple Ulcers, Vertigo 12, Chronic Fatigue Moderator 2013.No meds list I ran out of space.

Regular Member

Date Joined Jul 2012
Total Posts : 302
   Posted 3/4/2013 11:03 PM (GMT -6)   
Thanks. I refused to believe a CFS diagnosis for a long time because I didn't feel very tired, and I still don't usually feel THAT tired (I do sleep a lot though)... I think I will try cutting out gluten again, I tend to feel better when I'm not eating it.
The scariest symptom that's popped up in the last couple weeks is weakness in my arms and legs. I keep thinking I have MS. But it comes and goes so I don't think it is. I also have symptoms that mimic reactive hypoglycemia but my blood sugar level is never abnormal so I'm not sure what's going on there, but it's getting harder and harder to manage. I have to eat CONSTANTLY.
I have a doctor's appointment on Wednesday, I hope they will help but I have a feeling they won't. I'd like to at least be referred to a specialist.

Regular Member

Date Joined Sep 2011
Total Posts : 186
   Posted 3/5/2013 12:20 AM (GMT -6)   
Remember lyme tests are notoriously inaccurate as well.

Babesia, a common coinfection of Lyme often causes hypoglycemic-like episodes.

I would most definitely check this possibility out. HW has a great LD forum and members will help guide you to a knowledgable doc in your area.

Caught quickly it can be treated effectively.


Regular Member

Date Joined Nov 2012
Total Posts : 185
   Posted 3/5/2013 7:01 AM (GMT -6)   
I have lyme, and like most I didnt get treatment for years.
I had alot of symtomes that moved around, by the time I would go to the doctor and explain everything, it was changing to another symtom.
any way, most of the natural treatments and diet for lyme could help you feel better regardless.

Regular Member

Date Joined Jan 2012
Total Posts : 290
   Posted 3/20/2013 3:59 PM (GMT -6)   
Have you had your adrenals checked yet?  Another usual suspect in an attempt to find the cause of what you describe. I have had this ailment for 2.5 years, had an MRI a few months into this as part of the ruling out phase.  I did notice that in the report it mentioned I have a chiari one malformation, which was never brought up as a possible reason for my symptoms....dizziness, off balance, heavy fatigue, headaches.  I am having another MRI this week to compare, and be seen by a new neurologist.  Be your own advocate!  You may consider a neurologist as well.  If you are having balance or dizziness issues, you want to rule out anything really serious like a tumor or spinal fluid block of some sort.  My balance test mentioned that I likely have a central nervous system disorder, because my ears and vision are fine.  Some information to start narrowing things down is what you need, and have done so far.  Just my thoughts since I am in a somewhat similar situation.

Regular Member

Date Joined Jul 2013
Total Posts : 86
   Posted 7/23/2013 5:04 PM (GMT -6)   
Many with CFS or related fatigue can have adrenal or thyroid problems. Usually a normal doctor won't interpret results correctly. That's if they even order correct tests to begin with!

Saliva cortisol testing and hormones are a good start. A naturopath can order these and interpret them well to see if theres problems with your adrenals. Cortisol is an essential hormone for life and function.

Thyroid tests can be "within lab ranges" yet not be at a "good range for your body." So again, having a great naturopath familiar with this, can help order and interpret correct thyroid tests.

Two essential things to rule out for EVERYONE with CFS.

After that, we then have tests for vitamins and heavy metals. Iron levels. Vit D is an ESSENTIAL test for EVERYONE who comes across this thread on the internet and forum. Vit D is one of the most important things for functioning and immune system and should be near the upper end of the reference range.

Leaky gut tests and bacteria in the gut.

Many with CFS have some pretty horrible symptoms, and have gone on to get Lyme disease tests, with many coming back positive, and the diagnosis being changed.

Do as many tests as possible and make sure all are treated and in optimum functioning ranges. There's no point not treating or fixing something, that can be treated or at least lessen the symptoms.

Just a starting point for all with CFS. Then you can move on to other tests and possible causes. Nobody should just accept the diagnosis and leave it at that.

To improving health, and lessening symptoms. :-)
Newly registered contributer/member, but long time lurker/reader.
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