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Atthis 09-06-2005 09:04 PM

Should I seek a diagnosis?
I'm 17 and for the past three years or so have been very fatigued. I feel as tired when I wake up as when I went to sleep; I feel dully achy in all parts of my body; I sleep a lot; I feel tired all the time, to the extent that I often have difficulty concentrating in school; and after minor exertion I am unusually exhausted, more than most people. I frequently get colds, but other than that I usually have a dull pain in my throat, like when a sore throat is developing. Lately I have also had severe headaches, which may or may not be related to a horseback-riding accident I had a few weeks ago (my ct-scan was normal though).

My dad thinks the tiredness is the result of malnutrition, because I'm vegetarian; however I take supplements, I eat all types of dairy and am not anemic.

I should perhaps also mention that I frequently faint -- since I was eight -- and that we're fairly certain it's Neurocardiogenic Syncope, since it happens when I stand up from a seated position or stand for a long time.

What do you think? Does this sound like a case of CFS? It's fairly mild, since I can basically function, but should I still seek a diagnosis? If so, what kind of doctor should I go to?


Kali M 09-06-2005 11:03 PM

Re: Should I seek a diagnosis?
Atthis, hate to say that yes, your symptoms do sound like they could possibly be CFS. Some folks can have mild cases. All the symptoms you mention are included in much of the CFS literature. If the fatigue is from your vegan diet, you could easily tell by the test for anemia. If you're not anemic, it's probably not your diet (esp if you take supplements). Headaches can easily go with CFS.

Has anyone tested you for any of the infectious diseases - Epstein Barr Virus, Cytomegaly, Human Herpes Simplex 6 (NOT the same thing as genital herpes), Mycoplasmas? Or even Lyme disease (tick bites). This does not diagnose CFS, but elevated antibodies are often found in folks who have CFS.

I'm so sorry that you are so young and dealing with this. I've read that the earlier it gets identified and treated, the better chances you have of getting or feeling better. Get some books from your local store, or from online, and read them, then talk to your parents. Very few people (parents, siblings, spouses included) understand the extent of this problem and how awful it can make us feel. As them to look at some of the materials or online association webpages with you.

It's hard to say what kind of doc you should go to, because the docs can be specialists in many different things, but if they don't know the specifics about your particular problem (and MANY don't know very much about CFS), then they aren't of much use to you. What state are you in? There are some excellent docs who are specialists in CFIDS/FM in the states. Many are listed online or are discussed in the books I mentioned in Kiya's posting. If you have absolutely not choice but to go to someone local, I'd say probably go to a rheumatologist - but DO NOT let them tell you it's in your head. That is very old thinking but unfortunately still prevelent. You don't need a counselor (well, at least not to get your body well - though we all know that disease stresses us out in multiple ways - counseling often helps folks with CFIDS and FM because of all the stress we're under due to the condition). You can occasionally find a general practitioner who is understanding and knowledgeable. Ask around!! And stand up for yourself. Educate yourself. Unfortunately, for many of us, it's up to us to figure it out and treat ourselves.

Hang in there! Keep writing. Let us know how you're doing!


Atthis 09-08-2005 09:19 PM

Re: Should I seek a diagnosis?
Hi, thanks for your reply. I have not been tested for any of those illnesses; part of the problem is that my family has no steady income right now, so my father shrinks from spending money wherever it isn't absolutely necessary. Obviously, trying to get a diagnosis is expensive.

Yesterday a couple other things occurred to me; first, I've read that people with CFS sometimes get hot and cold flashes. Is this like extreme fluctuations in body temperature? Because this happens to me all the time, usually afternoons and evenings, but I always thought I was just weird that way. I'll go from shivering, huddled under a blanket, in socks and a hat, to -- a couple hours later or sometimes less -- being so hot I can barely stand to even wear clothes and wanting to open all the windows. And this is in a house where the temperature is regulated to be normal and constant.

The other thing is that my dad says I started being tired and having other symptoms around the time I became vegetarian a few years ago, which is true. But actually, that was around the same time I had a bad case of bronchitis, for which I took antibiotics. Could these two things be related?

It's hard to tell clearly about anything because the onset has been so gradual. I'll look for those books you suggested in Kiya's thread.

Thanks for all your help! I really appreciate it.

Kali M 09-10-2005 12:05 AM

Re: Should I seek a diagnosis?
Hey Atthis,

The oscillations in body temps can happen rather quickly or can be differences over a few hours or throughout the day. Especially if you're dealing with a re-emergence of a virus (like EBV). If you have a mercury thermometer, take your temp first thing in the morning before you even get out of bed. Leave the thermometer in your mouth for at least 7-9 minutes. I know this seems like a long time - but it's most accurate. And it's important that this is a mercury thermometer. I've taken my temp simultaneously by mercury thermometer and by a digital therm, and in the morning they were fairly similar, but in the afternoon, the mercury one was often 1 to 2 degrees different! When you start feeling hot or cold, take your temp again and see what's going on with it. My temp is usually 97.0-97.4 in the mornings, and about 2 months ago it was going up to 100.2 in the afternoons. I was feeling like CRAP. Do you notice any flushing of your face or checks during the times you're feeling warm? Look next time.

Afternoons and evenings is when I feel the worst. I get absolutely comotose and run down. It's when I will get strange temp fluctuations as well.

It is certainly possible that the diet could make you feel tired, but typically, unless a vegan is anemic, they tend to be fairly health (and usually much healthier than the general population). Have you been taking vitamins or iron supplements?

The bronchitis could be a bacterial infection or the result of a bacterial of viral infection that could either be making you sick, or could have started whatever "chain reaction" occurs that starts us down the road of CFIDS/ME. Did you ever feel any better during the antibiotics? What did you take and for how long?

Definitely look for the books and just start reading as much as you can possibly get your hands on. You are going to find a LOT of different suggestions and theories out there. Read them all. Something may apply more to you and your situation. Look at the string Bothrops started, too, entitled "Kali". The string is VERY long, but we talked quite a bit about our personal opinions and problems with different theories. And we both mentioned several different good books there.

I'm sorry you're unable to get testing done, but honestly, you'll find that many of us have gone from doc to doc (as Damzl68 said, she's been to 9) prior to either getting or having a diagnosis suggested to us. Even if your family could afford lots of tests, they may not give you results, or the docs may not agree to test you.

Hang in there, and please stick around this board and let us know how things are going. Natasha is another "youngster" - she's in college - who's been sick for a long time. She's starting back to school this semester, but she'll probably pop back on later.


Atthis 09-10-2005 01:50 PM

Re: Should I seek a diagnosis?
I don't know what kind of antibiotics I took -- I knew at the time but don't remember -- but I do remember that I completely lost my voice for four days and had a fever of 104. The antibiotics actually led to a pretty quick recovery.

I take iron supplements; they also have other things, though. They were reccommended by my pediatrician. I was recently told by one doctor to take B12/folic acid supplements, but I consume dairy, which I believe contains B12, and I know that you only need some 6 mcg of B12 a day, which is in the supplements that I take. So I don't know.

Thanks again!

Ahada762 09-13-2005 10:59 AM

Hi Atthis
Hi Atthis, I'm nineteen and have neurocardiogenic Syncope (I found out today). I'm also a vegetarian and the past few months I've had low energy, dizziness, off balance.... Anyway, my holistic healer told me to have B12 and B6 vitiamins which seemed to help (beets have a ton of it), I was also told to have some red meat (which I refuse to do). I tried some beef broth which is the first time I've had meat in 6 years, if you can stomach some broth with beef, you should try it. I felt my energy level rise within a few hours. Now I have a cup every morning and my energy has improved. I haven't had any for a few days and it's dropping again. I hope this helps

Atthis 09-13-2005 06:19 PM

Re: Should I seek a diagnosis?
Thanks, I hate to drink beef broth, esp. because I'm vegetarian for religious reasons, not health or environmental, so it's really hard to break away from even a little -- it makes me feel guilty. But I will try it if nothing else; I did get some B vitamins a couple days ago so I will start taking them.

Today I went for a bike ride, which was perhaps not a very good idea; it was very brief, not more than twenty minutes, but when I got off and tried to stand I almost fell over and I could barely lift a glass of water to my mouth -- almost dropped it. Argh.

Ahada, did you get a tilt-table test? My mother was tested this way, but they couldn't get her to pass out. I've been orthostatically intolerant since I was eight, it's gotten a lot worse over the years. Good hydration and plenty of sodium seems to help. We think it's neurocardiogenic syncope. Isn't this kind of syncope actually related to cfs?

arcticablue 10-07-2005 09:15 AM

Re: Should I seek a diagnosis?
Atthis, if you have a tick-borne illness such as Lyme disease and you take an antibiotic that kills the spirochetes it will cause a worsening of symptoms when the spirochetes die. Have you ever been checked for tick-borne illnesses? Babesia causes severe sweats and chills too. I sweat so badly that I can't stand it. I could be standing in a freezer and still have the sweat dripping down me. I never used to sweat that much until I got bit by an infected tick. I will soon be going on clindamycin and quinine for babesia, but have to address Lyme toxins in my head first. I can't wait to get rid of these sweats. It's an awful feeling, aspecially when your shower feels pointless as soon as you step out of it! Please check into getting some help by a Lyme literate physician as the the medical community is quite polarized about this disease. My son almost died due to the ignorance of a physician that wan't very educated with tick-borne illnesses. She told us that we didn't have tick-borne illnesses where we live. Sadly, infected ticks know no geographical boundaries. They are verywhere. My son was suffering from Lyme, Tularemia and RMSF. The Lyme specialist saved his life. I will warn you, the testing for these diseases is tricky and (if blood is not handled accurately) can get messed up and give false negatives or perhaps your body will not have made antibodies. If you get tested, make sure that Igenex Labs is used. I have been doing a lot of research and studying, and have recently read that many physicians believe that CFS is not a real disease but rather a symptom. Most people that have been tested for CFS actually have a virus or other disease. My Lyme specialist has found in all of his years of testing, that almost every CSF patient he has...actually had a tick-borne illness or virus. He is in Springfield, MO and treats patients all over the world. My brother's sister lives in a tick infected area...and she has all of the symptoms of Lyme, but won't go to the Lyme doctor for help. If your body responds in pain (or by getting better symptomatically) after taking certain antibiotics that is a good indication that you could very well have a tick-borne illness. It sounds like you could be having Jarisch-Herxheimer reactions, which is a temporary worsening of symptoms as the spirochetes die. What happens is that as the spirochetes die, they break open and their toxins are released and it makes you feel like you've got poisin in your body. It can make you ache severely. Once the overload of toxins is eliminated from your system you start to feel much better. Please check into there is help! It could be anything, but I want you to be aware of Lyme. Only a small percentage of Lyme patients even remember getting bitten by a tick...and not all develop a rash. I was lucky enough to see the critter (small as he was) and to get an EM rash. Check the symptoms out by going to sites of Lyme organizations or associations. They will have the most accurate information on the disease and can help direst you to a LLMD (Lyme literate medical doctor). Good luck!


P.S. If you can get an appointment with a Lyme literate doctor and your symptoms fit this category, he should start treating you even if you can't afford testing. If it is a tick-borne illness, the longer you wait, the more the bugs will multiply in your body. If your body responds to antibiotics...that is good. Let us know what happens!

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