Your story sounds very similar to mine in the early years in a lot of ways, particularly the parts about doctors not being able to work out what is wrong and thinking the depression is causing the fatigue rather than the other way around.

Getting a diagnosis will largely depend on finding a doctor who knows about the condition. That in turn will depend on where you are. There are people from all over the place on this site (I'm in Australia myself). If you give us a rough idea of your location, someone might be able to recommend a suitable doctor in your area.

The most important advice I can give you is that you need to listen to your body when it says you need rest. If you don't and it is CFS, you will only continue to get worse. I learned that the hard way.

Thank you so much for your reply. I live in Los Angeles.

I've seen a rheumatologist (no diagnosis except *maybe* Raynaud's), a sleep specialist (told me I have excessive daytime sleepiness), a neurologist (nothing), gastroenterologist (SIBO), and an internist (thought I had adrenal fatigue but tests were negative). I've also had blood-work done regularly for the past few years and it's all come back fine.

Despite all of this, when I've mentioned CFS to some of these doctors, they've all brushed it off. I'm 25. This all started when I was 19 and has gotten progressively worse.

Check out the Enterovirus Foundation and Enteroviruses .com websites. My mom and I have been infected with Coxsackie B2 and B6 for over 7 years now. Dr. John Chia is an enterovirus expert right near you in Torrance but I hear his waiting list is at least 6 months long. Andrea {Enteroviruses.com author] lives in Hermosa Beach. She is a real angel.

Don't let the doctors dismiss the possibility just because of your age. I was your age when I started experiencing the first symptoms, though mine took longer to get to the stage you're at, by the sound of things. There are others on this site who got sick even earlier and others who were worse right from the start.

LouiseS-thank you. I actually contacted Dr. Chia today and the wait is about four months. I'd prefer to get in to see someone sooner rather than later, but definitely a good option to have.

cmiat-I feel like all of the doctors I've seen so far are contradicting each other and/or are reluctant to acknowledge that the fatigue is the issue rather than a symptom. I'm not ready to give up yet and am just going to look elsewhere until I can find a doctor who really hears me.

Hi there - Sorry you need to be here but welcome.
I wanted to put my usual list of "Did they test this"? out there.
Hypothyroid? (specifically a TPO test for Hashimotos, because a "normal" TSH means nothing)
Lyme disease?
Celiac? (has been known to pop up after a bout of mono)
Have you seen a naturopath? Many insurances now cover them under specialists.
Couple questions if you don't mind.... if so, just...don't answer :)
Your BP, temp and heart rate in the morning - also your blood oxygen if you have a pulse ox meter.
What I'm getting to is adrenal fatigue even though the test for adrenal issues came back negative. Most docs are looking for signs of Addison's, not the lower fatigue type of issues. A naturopath could help with this as there are herbs and vitamins that can give you some of your energy back.
For example, I was DX (diagnosed) with CFS back in 1994 when it was known as post viral fatigue syndrome - and had many years with remissions and then deep drops. Until I saw my naturopath and she tested for b vitamin deficiencies and we found I have an autoimmune issue for absorption of most b vitamins (and grain sensitivities, which we discovered with "Alcat" testing). Now, my symptoms are generally leveled out - I have less energy than most people but it's steady enough where I can do some things each day and know when to stop. Without taking large amounts of B12 and other B vitamins; eating a lot of red meat; having whey protein twice a day and avoiding all grains as much as possible I don't function well at all. It's like having the flu if I mess up a few days in a row.
You having SIBO is telling for this as well. It's hard to get the nutrients you need when your body is fighting that kind of thing. Probiotics twice a day, and enzymes after you eat specific to the foods you eat will help. Culturelle is a good probiotic to start with. I use quickdigest chewable tablets after meals as they cover most everything (in the US they are in most grocery stores).
Ok, hands are shaky. Time to go make the beds and rest a while.
let us know how you are doing....

Hypothyroid-been tested multiple times and results have always been fine
Lyme-also tested multiple times over the past six years
Celiac-tested for this before I got the SIBO diagnosis

The internist I saw that tested me for adrenal issues specifically thought I had adrenal fatigue. He actually takes a homeopathic approach if possible before resorting to prescription medications. He did have me on a number of supplements and modified my diet significantly, but we did not see improvement. I'd have to go back and look at all my test results. Along with the SIBO, my gastroenterologist told me I have absorption issues, so it could be worth investigating that further-thank you!!!

You could have your regular doctor order the Coxsackie B and Echovirus tests now because that's probably the first thing Dr. Chia would do anyway. We used the services of his EV Med Research lab to analyze my mother's colonoscopy tissue biopsy taken 6 weeks after she and I got sick. They can tell if enterovirus have infected the cells but can't tell which serotypes are there. If you get the tests, make sure they are Serum Neutralization only. The Enterovirus Foundation doesn't recommend Polymerase Chain reaction tests because they miss most chronic enterovirus infections. I only wish I could tell you that it could lead to treatment but unfortunately there is nothing approved yet, although Andrea told me that at least one drug has been developed in Belgium. Let's hope.

I think my CFS was brought on by mono when I was 18 as well, so I'm curious what your recovery was like from the mono. I had no insurance or any way to follow up with medical care after I went to an emergency room and they said it was mono but with complications. I was young, naive, lived alone, no money or family or social support network, so I didn't even know what questions to ask or how to recover. Over a years time I gradually got stronger but had recurring fevers and swollen lymph nodes for years. Did manage to put my way through college but in early 80s I started getting that flu feeling that wouldn't ever go away. About 1990 Self diagnosed from reading a health book that was organized by symptoms..I fit every one for CFS, but no doctors in my area ever heard of it. I still don't have a dr who is willing to learn about it. I did many years ago briefly but that dr is retired, but honestly, I still knew more about CFS from my own reading than she did. I've gotten better on my own with following nutrition and rest guidelines in the literature, and using alternative treatments paying out of pocket.., never had great insurance and honestly feel when I fir one year had a full time job that offered good insurance, I went downhill trying to fit into their demoralizing medical system. All that to say, there is so much we can do on our own to help with symptoms. Best if luck to you!

Louise, you mentioned Belgium having a treatment, and it reminded me that I had recently spoken to my friend in Holland who has a friend who got wonderful care for CFS when living in Belgium, then moved back to Holland and the attitude about CFS in Holland is do bad that she's planning to move back to Belgium. I'm here in the US thinking that those Europeans get to share all their science with each other because at least they are close to each other, but I'm baffled that these advances don't seem to cross national borders! Anyone understand why that is?

LouiseS-Thank you for all of that detailed advice. It will be very helpful moving forward.

Starsister-I was a sophomore in college when I got sick and lived across the country from my family. I took a week or two off school, then went back to finish the semester as best I could (I got the mono diagnosis right around Thanksgiving). I wanted to take the next semester off to recover, but my parents were afraid that if they let me stay home, I'd never go back. So, come January, I went back for winter in upstate NY and I'm sure the weather conditions were no help with my recovery.

I haven't felt the same since then. I can't remember the last time I felt well rested. Even if I do wake up feeling energized, it normally fades after about two hours. Things really took a turn for the worse when I accepted a job right out of college that had be working 10-12 hour days in high stress conditions. I think that coupled with the fatigue pushed me to my breaking point.

I just do not know what to do to make it through the next few months. I'd love to finish the masters program I'm in, but what's the point if the stress and workload leaves me unable to do anything upon graduation? It's only been a week and I can't even find the energy to sit at my desk and begin work.

Hi jns, I know how overwhelming it is when you're fatigued and have work to do. I started a Uni level course before dropping out and realizing that it just wasn't for me, so hopefully I can give some advice.

I would check with your Uni to see if you can take a study break (A year or two off for medical reasons), this was my first step when things got too much. At the time I was convinced that I would come back but it gave me the right space to think about what it was I really wanted and I realized I was only pushing myself because everyone else was doing it. Now I have learned there are many different ways you can go in life and I'm much happier for it.

If you want to continue with the course we are here to support you! Taking some time off it doesn't have to mean giving it up for good.

Please keep us updated about your case. I hate to recommend anything not knowing for sure if you have a chronic enterovirus infection [sure sounds like you do though]. Dr. Chia's Equilibrant formulation is the best he can do with what's available and might be worth a try. One of it's ingredients is a chinese medicine called oxymatrine [sophora root extract]. My mom and I took oxymatrine by itself and it worked great for about two weeks, then fizzled. We think the viruses probably became resistant. Oxymatrine probably would have worked better if it was part of a multi antiviral cocktail to hit the viruses from different angles and minimize resistance. That's what Dr. Chia is trying to do with Equilibrant. It's not prescription and you could assemble the ingredients yourself which would probably save money.

MHx-It's nice to hear you were able to make the decision that was right for you. I'm definitely struggling right now, but just trying to take everything day by day. I am supposed to graduate in less than four months, so I'd love to get through the program if possible. Luckily, my professors are all very understanding and I'm sure they'd be more than accommodating should I need to shuffle my schedule/workload around.

LouiseS-I will definitely keep you posted. As of right now, I am supposed to see Dr. Chia at the end of May. Fingers crossed he has a cancellation and I can get in sooner. I'm also going to keep searching to see if I can find any other qualified doctors in the Los Angeles area, but I know Dr. Chia is my best bet.

i was just looking for a dr who treats CFS today and i found a Dr. Tenenbaum.

my search was a simple - find a dr. near me who treats CFIDS/ME

this is one of the first to come up - and he was checked as frequently treats.

i think Thousand Oaks is maybe a half hour or so from Los Angeles, traffic permitting? maybe as a starting place for you : )

Steven A Tenenbaum MD PC
1000 Newbury Rd Ste 210
Thousand Oaks, CA 91320
(805) 214-9990

Fax: (805) 214-9930

Accepting New Patients: Yes



Monday 9:00 AM - 2:00 PM
Tuesday 12:00 PM - 4:00 PM
Wednesday 12:00 PM - 4:00 PM
Thursday 9:00 AM - 12:00 PM
Friday 9:00 AM - 2:00 PM