I have been having symptoms of what could possibly be ME/CFS for 4 months now, and I'm trying to figure out what it could be.
It started back in April when I was studying abroad in England. I came down with what I think was viral tonsillitis. I felt rough and feverish, but wasn't completely bedridden. I also had tenderness on one side of my neck at a time that hurt to touch. I had this infection off and on for 8 weeks, the doctors tried penecillin a couple times, but I'm not sure if it worked as the infection kept returning, and would infect one side of my throat at a time, going back and forth.
Eventually after 2 months, the pain sort of settled permanently on the right side of my neck and throat, and the lymph nodes under my right ear and under my jaw became really tender and painful. They aren't super enlarged, but really hurt even just to move my neck slightly, and the pain travels up into my ear, through my jaw, and down to my collarbone sometimes. It also feels like the far right side of my throat is swollen as it hurts to swallow, but this may just be the node under my ear protruding into my throat? The nodes on the left side of my neck act up occasionally, but it's predominantly on the right.
Other symptoms I'm having:
The fever from my initial infection is gone, but I'm in a constant state of malaise, all achey and tired. I never wake up feeling refreshed no matter how much I sleep. I feel really out of it too. No joint pain, or pain anywhere besides my lymph glands, but I feel weak all over. I have also lost nearly 20 pounds in the last 5 months, and considering I only weigh 90 now that's a huge drop. My stamina is gone and I can't tolerate alcohol or doing anything fun. There is a direct correlation between when my lymph nodes acting up, the malaise, and feelings of nausea/loss of appetite. My IBS and anxiety have been terrible lately too. I'm beginning to get depressed mostly because I'm getting sick of being ill.
When I came back home to America from England 3 weeks ago, I went to a clinic and they ran some blood tests including CBC, mono, and thyroid, along with a chest x-ray and urine test. Everything came back completely normal. They wouldn't give me a Lyme test since I don't have any joint pain and never had a rash, and wouldn't test me for cytomegalovirus or HHV-6 because they say they're only a problem for pregnant women and people with AIDS.
I can't go to a specialist and get any other tests done right now because I have no health insurance, and am having trouble getting any since I have pre-existing symptoms. I've been too sick to get a job, and I don't really know where to go from here. Do my symptoms sound like they might be CFS? I'm considering trying again to get tested for the herpes viruses at the clinic, since there seems to be a huge connection with CFS, but I'm not sure if my symptom pattern would suggest that or not.
Oh and I'm not sure if this could be a factor, but the house I was living in was FULL OF MOLD for months before and during I was suffering from all the tonsil problems.
I know that I have only had these symptoms for 4 months, and it takes 6 to get officially diagnosed with CFS, but I really don't feel like I'm improving at all, if anything I'm getting worse.
I'm 24 years old and female btw. If anyone can give me any insight into this illness it would be greatly appreciated. Thanks for reading all this!
Hi Behooved. Sorry you are feeling so lousy. And I wish I could give you all the answers that your looking for. From "my" own experience I had Lyme, Epstein Barr Virus, Cytomeglovirus, Babesia, Bartonella, Chlamydia Pnumoniae. And who knows what else. But from what I have been through and observed the weight loss tends to make me think you might want to look more into Lyme Disease. I lost 20-30 pounds myself. I could be wrong but I thnk most people with the Chronic Fatigue (EBV,CMV) tend to be more on the heavier side cause they are sooo fatigued. Couple years ago I wound up gaining 50 pounds after I had been into treatment for Lyme for years. Sooo you pretty much have to whittle away at different things until you find the answers.
You will find doctors ALL have different opinions out there. Lyme Disease is VERY much in California now. Placer County, Sacramento County, Nevada County, all over ...I also want you to know that test are NOt accurate for Lyme. But you may be one of the lucky ones that test positive for it. Even if you have "one" band showing you have lyme...(but not according to majority of doctors) You may want to go post on the Lyme board and ask more questions that you have about Lyme.
And I "do NOT" have Aids...(that I know of) and I have high titers for CMV. I think they use AIDS patients as a example. But the doctor that I go to who is in Sacramento and specailizes in Fibro and Chroinic Fatique. He test and treats for Epstein Barr Virus and Cytomeglovirus. And all of his patients aren't dealing with Aids...
Do you have any access to money? If you do I would "highly" recommend not wasing your time going to the clinic. Those doctors are text book doctors. They are not specialist. I think it takes many of us thousands of dollars, and alot of wasted time finding this out.
My heart goes out to you. I wish there was more that I could do to help you. Try to eat as well as you can and drink alot of water.
You may also since you have computer access is to learn as much as you can about symptoms and treatment on each of the things I talked about. Knowledge is power
Thank you very much for your reply jojo, I really appreciate it.
Would you mind telling me the name of your Dr in Sacramento that specializes in CFS? I'm on the lookout for one in the area who would know how to test me properly for EBV/CMV and the other herpes viruses. I think you are absolutely right about the clinics being a waste of time.
I actually have been suspecting lyme, and since my last post I've developed pain in my legs, elbow and shoulders that seems to be getting progressively worse. The only thing is that for most of the last 3 years I have been in England, not California. I only just got recently back home to CA, after falling ill. I don't really know the chances of picking up lyme disease in the UK, but I guess it's worth getting tested just in case, if I can find a doctor willing to make sure I have a reliable test done. Can you recommend a lyme literate doctor in northern california?
Thanks again for your useful information and kind words.
Hi ...I see Dr. Michael Powell...he has a Fibromyalgia Treament Center....also deals with CFS.
The one doctor for Lyme I was going to suggest closed shop up in Nevada City from what I read over on the Lyme board. he does have other offices just not in your area. There is also Dr. Stricker in San Francisco. You might want to post over on the Lyme board on a new Thread and see if there is any other suggestions. Also on the top of the Lyme board people have posted Lyme Doctors...Oh there use to be a Dr. Johnson in Chico at the Hyperbaric Treatmet Center. He treated my sweeties nieces. Remember though as you go through the lyme journey. You CAN have lyme and have a negative test result. So you really need a doctor that understands lyme.
I am new to this site but had blood work done last week that found me with Epstein Barr, I didn't even know what it was and my Dr. didn't seem to know much either, he said I was in the down swing stages of an "uproar" of it. I've been searching the internet for some answers as well.
My mom has suffered with Fibromyalgia for years, even before they knew what to call it. She did a study at Ohio State University in the 90s when they were able to test patients. She seems to think I have it as well, (joint pain, soreness, achyness etc....). I have found some similarities searching EBS, not much out there!! I get a swollen lump under my ear that I take benedryl for and it goes down after maybe 24 hrs. I did see someone post something about adrenal problems associated with EBS. I am a mother of 2 and only 37, we just lost our insurance also. I started taking a B-complex vitamin a couple days ago and I think it has helped me! Not majorly but any added energy is appriciated! My last swelling on my neck was last saturday and it still hurts to touch my jaw line!!
I also saw a website stating that if you have ever had Mono, you have a 90% chance of having to live with EBS opposed to just getting the virus (EBV). I did have mono but it has to have been 25 yrs ago....???
Anyway hope you are getting some answers, don't give up, everyone seems to have to tell their Dr.s what to test them for anymore!!! It's a shame, but stay informed!