Post Q Fever Chronic Fatigue Syndrome

J

JoeNavy

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All,
I am here to ask some questions and get some advice. I got Q Fever in Iraq in 2008 and I've had lasting symptoms on and off for years now. symptoms of what I now know to be QFS or Post Q Fever Chronic Fatigue. Things have gotten worse and I'm being seen by Behavior Health and going to a Rheumatologist soon. Symptoms are very similar to CFS with Fatigue, joint and muscle pains, headaches, night sweats, excessive sweating, depression etc. I'm going through CBT for PTSD currently at Behavioral Health.

I'm at 17.5 years Navy right now and just got put on my first LIMDU for Behavioral Health. Not really sure what the future holds just looking for advice I suppose. I know Q Fever is listed as a presumptive Infectious Disease and the VA recognizes Q Fever to cause long lasting symptoms like CFS, FIBRO and IBS. What do I need to do to get everything documented correctly? I've always avoided Dr's so my record doesn't paint a picture of what I've been dealing with. Any help is appreciated.
 
If you do pursue the ME/CFS route be prepared for a LONG journey of not getting much answers. Took me 2 years to chase down a diagnoses for my symptoms and it ended up being ME/CFS. The largest indicator that you have the condition is if you experience post exertional malaise following a mild to moderate strenuous activity. Given fatigue can be part of hundreds of other conditions the VA takes a ME/CFS diagnoses with much scrutiny. You must meet at least 6 symptoms of what the VA considers ME/CFS symptoms in order to have a verified diagnosis in their book. Reach out to me if you have any further questions on ME/CFS!
 
Thanks for the reply. I have problems with fatigue following stress and physical exertion. That has waxed and waned over the years but got worse a year or 2 ago. Night sweats, joint pain, chest pain, sleep disturbances and I don't have any explanations other than QFS or anxiety. I've been to the cardiologist, infectious disease, mental health and soon a rheumatologist. I have already been on a long journey in my eyes. Noone has diagnosed me yet officially but I know it's QFS. Now I need to find out how to make it better. Any help there is appreciated.
 
Based on some of your symptoms I would agree that rheumatology is a good next step. However, if you are still not receiving answers then I would encourage you to keep pursuing a diagnoses and eventually you will find the right doctor. Researching medical conditions yourself can create paranoia, however, doing so is also a great way to get the care you need. I have received the best medical care only with the effort I put into pursuing each of my conditions. Asking your primary care doctor for a referral to doctor x, y, and z sometimes is the best step you can take as a patient. Just be prepared to explain your logic behind why you would like to see each specialist. If you depend on your doctor on base to figure this out and to give guidance on what doctor to see next then you will get nowhere. I have even gone to the extent of researching blood/urine tests that might be beneficial to solving my medical mystery and my doctor gladly placed the order for the tests.

Also, I don't know if the Navy provide the services of Case Management, but if they do then I would highly recommend that you request their services. I had no idea that this organization existed, but after being assigned a case manager to aid in my medical care I have now started receiving very quick answers and treatment for my medical conditions. If I need to see my doctor, get new referrals, get prescription refills, ect, then all that I have to do is call my case manager who works at the clinic and she does all of it really quickly. Case managers essentially work as a mediator between you and your primary care doctor.

Lastly, if you are tired of receiving mental health treatment on base (I really didn't benefit from mine) then you could request a referral to the local VA's mental health department. I have absolutely loved my local VA's mental health services. They offer 6-8 week classes for many issues that I have been battling. Their PTSD program is also very extensive and gets great reviews (from the people I have talked to).
 
Almost_Separated, thanks. I have Tricare Prime Remote so I have been seeing civilian docs for the past 2 years. I just started to talk with the Navy Behavior Health people. The Psychiatrist seems interested in helping me. He was the first to suggest my symptoms could be from something organic. My PCM is great and will put a referral in for whatever I need; The Rheumatologist just got approved. I also have to see a podiatrists for the foot pain although I did that a few years ago so I know what they will tell me.

I've never been a person to talk with Dr's about my issues. This is all fairly new to me and is pretty stressful in itself. Luckily I have a counselor who I trust that has been great. Been talking to him for a year now.

The real concerns I have are that my symptoms have gotten worse as of late. I am going back for my stress echo in a week because I keep having chest pains. I cannot believe how painful my joints have been. The CBT is pretty intense which may be contributing?

I want to get tested for Bartonella because I had been bitten in Iraq and had streaking down my neck and painful lymph node. Those sx would return every so often for the next 7 years. They never tested for what the infection was? Told me Q Fever was form inhaling some infected goat shit which presented a few months after the bite.
 
My suggestion for when you see the rheumatologist that may benefit you and him/her is that you write a short essay about your symptoms. Put that in a folder along with other reports you have received from the years like MRI's, CT Scans, Neruo reports, lab work, ect, really anything that may help the rheumatologist grasp the whole picture. I have started doing this with most new doctors I see and they absolutely love it. The reason I say to do this is because in my experience doctors have a short attention span and tend to stop listening after the first minute. If you write a short essay about what is going on they are more prone to read the entire thing prior to calling you back and maybe even do some research beforehand.
 
Thanks,
Already working on that.

Here are some links about Q fever that someone may find interesting.

CDC says about 200 service members got Q Fever since beginning of war in Iraq and Afghanistan. Something to note is about half of all Q Fever cases are asymptomatic. The Post Q Fever Chronic Fatigue is the real deal I am living with it now.
https://www.cdc.gov/mmwr/preview/mmwrhtml/rr6203a1.htm

Info on literature about Post Q Fever Chronic Fatigue. There isn't much info out there but this sums it all up nicely.
https://www.ncbi.nlm.nih.gov/pubmed/27223465/
 
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