Chronic Fatigue Syndrome in 15yo

So sorry to hear about your daughter! We have been struggling with the same thing. It started with dizziness/POTS and brain fog for my 15-year-old daughter; then she got the flu and since then she has had daily headache/migraine and chronic fatigue and brain fog. It's been over 18 months now. She has a diagnosis of post-viral syndrome because she had mono before this all started. You have to see specialists because primary care wants to simplify it to only anxiety/depression. We have been waiting for a year to get into the Center for Complex Diseases in Palo Alto which focuses on CFS. If you think its Lyme, I suggest Dr. Sunja Schweig. Is your daughter able to go to school? My daughter had to pull out of high school for a semester which was very difficult because she is ambitious. She's back in again this year, but has just had a CFS "crash" and has missed 1 week of school and this week isn't looking good either. I'd love to connect with anyone else going through this to share info/ideas.

I had low-level chronic fatigue for several years for what turned out to be a low-level infection caused by a cracked tooth. My dentist mentioned fixing it, but since it wasn't causing pain, I let it go. As it turned out, the crack was allowing bacteria to enter my system, causing the infection and fatigue. Once the tooth was fixed and I had a round of antibiotics, my energy was back. Thus, my advice is also check with the dentist for any possible sources of bacteria/infection.

Sorry you and your daughter are going through this. There is always an underlying reason for CFS.  Allopathic medicine is not great at finding the underlying cause.  Naturopathic/Integrative medicine focuses on identifying root causes.
I’m not a doctor, but the symptoms that you mention could be the result of hormonal imbalances and hormonal imbalance could be caused by many things, Lyme as you mentioned, but also toxic exposure like mold, mycotoxins, heavy metals.  The DUTCH test is s dried urine test that tests hormone levels and adrenal function. Tests can also be run to look at heavy metal and mycotoxin burden. A naturopathic doctor is out of pocket and can get expensive, but they have a tool kit that can address the issues you mention. Think about what happened before her symptoms started.  Did she have Covid, Mono or another virus?   Did she start or stop any medications? Did you make any changes to your house such as new furniture, mattress or construction? Review what personal care products are used and changes to diet. A doctor looking for the root cause will ask these types of questions. I do not have personal experience with the following doctors, but I know they work on complex chronic illness, Dr. Elizabeth Korza in Piedmont and Gordon Medical Associates in San Rafael. Good Luck and hang in there!

I'm so sorry that your daughter is suffering. Kaiser is not at all good at handling CFS. I suggest asking them to test her for Postural Orthostatic Intolerance (POTS). There are treatments that Kaiser should be able to offer if she does have POTS that will help with the dizziness, temperature regulation issues, and sometimes brain fog. Also check out the organization Solve ME/CFS Initiative. They have a fact sheet on CFS in adolescents that might be helpful to you and your daughter's Kaiser doc. The website cfsselfhelp.org has some helpful tips about how your daughter can manage her limited energy.

I also recommend trying to get in to the Center for Complex Diseases in Mountain View. I have heard there is a very long waitlist, but the doctors there are very familiar with these symptoms, they know what to look for and test for, and, most importantly, they can offer some treatments that can make a huge difference. They don't take any insurance, so it is all out of pocket and very expensive, and it can be hard to talk Kaiser into covering the medications, but if you can swing it, please do try. They have made a world of difference for me in my long CFS journey. Good luck, and I am wishing your daughter the best. 

I'm so sorry that your daughter--and your family--are going through this. Dr. Todd Maderis, at Marin Natural Medicine (in Larkspur, but phone and video appointments are regularly used), could be the right person to help. He treats patients holistically and has deep knowledge of and access to tests that a Kaiser physician, for example, wouldn't. He definitely provides individualized medicine. I've worked with him for years for a variety of complicated health challenges that traditional/western doctors either dismissed (with the "bubble" over their head silently telling me I was crazy as the traditional blood tests found nothing wrong) or wanted to treat me with antidepressants. Dr. Maderis also successfully treated a very dear friend and both her daughter and step-daughter (as teenagers) for very bad cases of Lyme and other complicated illnesses. I recommend him without reservation. Best of luck and may your daughter be on the road to feeling healthier very soon. 

I'm so sorry for your daughter.... it's really challenging to be dealing with something like this at her age. My teenage daughter had similar symptoms and after a lot of tests and doctor visits, she was finally diagnosed with POTS. She was definitely dismissed by a few doctors, but it was clear to us that something was wrong. If you suspect it could be POTS, you could Google "poor man's tilt table test" and follow instructions to see how positional changes affect her hear rate. If it's concerning, I would ask Kaiser to perform a tilt table test and/or refer her to Stanford's Autonomic Disorders program. 

So sorry to hear your daughter is struggling with these issues. Has she been checked for Multiple Sclerosis? If not, I would push for an MRI to see since the symptoms have been going on for so long. MS is not something that can be done through a blood test). It is not common for people under 20 to get MS but it does happen (I know a couple of people). (I'm 54 and have had it for 21 years). All but night sweats are some of the most common symptoms of MS. Please feel free to get my info from the moderator if you want to get in touch. Good luck.

This is how I felt when I had severe iron-deficiency anemia. It went undiagnosed for years! I had celiac disease, and they checked me for everything else and amended all of my other deficiencies, but they relied on my hemoglobin score to check for iron-deficiency, which is only 25% sensitive for iron-deficiency, instead of a ferritin test. I'm still so mad thinking about it. So, make sure that you do a ferritin test for anemia. I will say that celiac disease can make you feel like this too. I didn't have any gastrointestinal symptoms so nobody ever thought I had celiac disease, so don't dismiss that as a potential diagnosis either.

Dear Mom,

Your daughter is so fortunate to have you as her parent. (As a parent, I know it's tough for us both when our kid --even if full grown -- has a health challenge that no one can get to the bottom of).   I wasted a lot of $ trying to find out about the various aspects of my autoimmunity challenges --Chronic Fatigue being one of them--Note: My mom was from a very different world/generation & she did all she could but didn't know how to search for answers.  I work with Dr. Akil Palanisamy, graduate of Harvard Medical School, who is now located in Sacramento and currently NOT accepting new patients.  (He/the Sutter system-- takes my Blue Cross/Blue Shield ..& most other insurances, including Medicare...but probably not Kaiser) Why not call his office and ask if he knows of someone here in bay area.  (916) 887-4660  He practiced in Marin local for a long time before moving to Sacramento.   Also, you might find -- I got a gluten-intolerance test because of Eileen Laird and it showed I was celiac. Eliminating gluten certainly helps me. https://www.phoenixhelix.com/media/   --- All the best.