My name is Valerie. In October 2004, I got bit by something (probably a rat flea) while visiting my son in Croatia. One week later, I become very lethargic, had severe headaches, diarrhea, and dizziness, and generally thought I was dying. After a month or two, I found I had a very difficult time driving and could no longer do puzzles or play cards very well. Finally, after many doctors and tests, nearly 4 years later, I was diagnosed with Brill's disease (latent Typhus) and got treated with 12 weeks of Doxycycline. I still don't feel well, have frequent headaches and queasiness, and have memory and cognitive problems. Also, my armpits ache and my arms and elbows hurt all the time. I cannot sleep through the night without drugging myself. And I have to take meds to give me energy during the day. I am extremely fatigued most of the time. I have been out on sick leave for about 8 months, and don't know if I can ever go back. I have such a hard time concentrating, and seem to say and write things wrong.
The doctor who diagnosed me said that sometimes the lethary associated with typhus is like a form of encephalitis. I would like to know if the symptoms I am still experiencing are what you are going through. The MRI of my brain does not show any problems, but I know my brain isn't what it used to be.
I'm sorry to hear about what you are going through. I've been diagnosed with ADEM (tentatively- my MRI did show some change, but two repeat showed no changes so they don't think it is MS), which is a type of encephalitis (the post infectious type, not the type caused by an insect bite).
Symptoms can vary MASSIVELY, from what I can see. I have visual problems, fatigue, dizziness and general muscle weakness. I don't think my cognitive function is impaired- though I have wondered if my inability to remember what I've done when asked is a minor symptom of this, as I didn't notice it before. I can imagine that that side of your symptoms is incredibly difficult, but you are not alone in this. Many people experience these types of symptoms, and it's great that you are seeking help from people to talk to. Do you use facebook? I found that the support groups on there were a good way to meet people going through similar experiences, although do use these as well, definately!
Can you get therapy to help with your cognitive function? I don't know much about it, but I'm sure there must be some things you can do to help. Ask your doctor- maybe see if they can refer you- if you haven't already.
What about some type of physiotherapy, or yoga, or something? Look at what people with ME do. I take ginko bilboa (natural herb thing). I don't know if it helps or not, but I take a lot of vitamins, which may help with energy. I don't know.
I've got to go now, but please message me if you want to talk. Take care of yourself xx
Thanks for responding to my post. I bought some Ginkgo Biloba a few months ago, but my pharmacist said I couldn't take it with all of the other meds I am on, and now I am on even more meds - meds to pep me up, meds to calm me down at nigh so I can sleep, meds to help my stomach. Five years ago, I took nothing by Estroven, an over-the-counter soy product for peri-menopause.
I'm about to give up on finding out what is wrong and going back to work and just pushing through this crap like I did for the past 4 years. Afterall I worked through the 4 years while having undiagnosed typhus, and it's gone now, so I should be somewhat better now.
Yesterday, I had psychological testing and I think I passed with flying colors. So evidently my problems are just brain fog caused by menopause. I guess once you hit your 50s and become post-menopausal, you are just screwed.
I also found out that some of the night time symptoms I have been having may have been from Tylenol and what it is doing to my liver. I had a drink of wine Sunday at dinner and then a post dinner Irish coffee. (I don't drink more than once or twice a month.) Then, around midnight, I took a Darvocett N for a headache. I woke up around 1:30 a.m. with a hangover multiplied times five. It felt very much like the night time symptoms I have been having for the past 4 1/2 years. I couldn't sleep through it so got up and watched TV from the easy chair for about 3 hours before it went away. I think I might get my liver checked out, and stop taking Tylenol and Darvocett N, for sure.
I had a crying jag this morning 'cause I am so sick of all of this, but am fine now. Suicide isn't an option because I have too many people who love me that I wouldn't do that to, especially my husband of 37 years and my two beautiful little grand daughters, not to mention, my son, my mother and sisters, and all my friends and other family members. Besides I have a good life, except that I don't feel so well a lot of the time. I get so exhausted so easily.
Thanks again for responding. I will look for a reply if you post one.
04/09/2009 12:40 PM
Posts: 16 New Member
Besides I have a good life, except that I don't feel so well a lot of the time. I get so exhausted so easily.
That's good, and it's great that you can see that!! I feel the same. I think it's just a case of focusing on the good, not the bad. But that doesn't mean it's not ok to break down every now and again. Are you getting support from the people who care about you? Perhaps counselling or something similar might help you.
Definately get the medication checked out, though, and speak to your doctor about all of your symptoms.
That's great that you think you've passed. I think it's easy to attribute basic symptoms that you expect with age, or even with tiredness, to something more serious when you have a long term condition. I've certainly noticed symptoms a lot more than I did before. I suppose you are on alert for them, but try not to worry too much. Definately see your doc, as I said before.
I know what you mean about alcohol. I can't drink unless it's a really special occasion as I just feel too rough. It took me a week (sleeping tons and feeling insanely rough) to recover from my birthday drinking, which is crazy. I think it's your body telling you that you shouldn't drink. It's dealing with enough, so I suppose limiting it does make sense. Maybe try going tetotal for a while? I know it sucks when everyone else is drinking, but it's not THAT bad. My friends got me doing water shots so that I could join in lol.
It's a good way to think about things- and to explain to other people what you are going through, and the decisions that you have to make.
Could you go back to work part time? Is that an option? So you can gradually ease yourself into it. You don't want to tire yourself out too much. You need to rest. I know it's frustrating. Perhaps you could think about something else you've always wanted to do, to give you something to do if you feel a bit lost at the moment. E.G. writing a novel? Learning a language? Volunteer work? Anything really. Could help. Plus feeling that you are doing something is pretty important when dealing with feelings of depression. Although, you said that suicide is not an option, it's evidently crossed your mind. Something new could help. Sometimes you do want to throw it all in and give up, but you are stronger and better than that. It's an extra challenge given to us in life, and we can get through it. Do you believe in God? I suppose this is where faith can help you- but even if you don't (I don't) it doesn't make a difference. Perhaps write a list of things you want to do, and work towards them.
I hope things do get better for you. I know that it's a long time to be ill, but it's not the end of the world, or the end of your life. It gives you new and different challenges, but you can still have a fun and enjoyable time- as I'm sure you've found.
Take care of yourself. xxxx
04/09/2009 03:16 PM
Posts: 5 New Member
I just got back from a long walk and read your post. I do believe in God and have a strong faith. And my faith means that no matter what happens, I will be okay. Meaning, even in death, I will be okay. But I am not ready to go there, even though my daughter has died before me (at age 20 in a car-truck accident) 12 years ago. I know she is proud of me and her Dad for surviving her death, something I never thought I would survive, but I am certainly not ready to join her.
I am seeing a therapist so have the opportunity to talk to someone about all these symptoms. But I really believe that it is the Tylenol and other drugs that I have been treated with that are causing my illness. Since I posted last, I realized that the reaction I had to Lidocaine with Epinephrine at an oral surgeon's office on Friday, June 13, 2008 was probably due to my liver not being able to break down the medication. (I almost went into respiratory arrest. I literaly thought I was going to die-it was so hard to breath.) I also almost went into respiratory arrest after taking Oxycontin one day. My breathing became so labored that an ambulance had to be called at work. And once the doctors did all the labs at the hospital, they told me I was in better shape than they were (even though I almost died!)
Sometimes, I think we have to cure ourselves. And by golly, I may just do that. I have an interview shortly to go back to work part time, at a new job, but at the same place. So life is looking better. It is amazing how much better things can look in a matter of hours.
Thanks again for contacting me. I will keep you posted (no pun intended).
Post edited by: Valerie1952, at: 04/10/2009 04:57
04/10/2009 05:00 AM
Posts: 5 New Member
I do have an interview for a parttime job I applied to on campus. They just haven't contacted me yet to set it up, but I am on the list to be interviewed.
And I do have lots of support from my husband and family. Other than feeling sick a lot, I have a good life. BTW, I woke up this morning feeling good for a change!
05/24/2009 08:52 AM
Posts: 5 New Member
Sorry I haven't replied sooner, (but maybe I did and just don't remember I did). Well, I finally went back to work. Two weeks ago, fulltime! And I am managing it okay. No one has noticed my mistakes yet, except when the wrong things comes out of my mouth, but on paper, I think I have caught most of them.
I interviewed for a part time postion that I had applied for on campus, but didn't get the job. Had it not been for my illness, I think I would have, which I know is illegal, but trying to prove they are discrimimating against me would be hard. You should see the letter my husband wrote to the head of Personnel. It suggested discrimination, but I am not going to let him send it, yet. Too many layoffs going on right now, and I don't want to be one of them.
I appreciate your response a few weeks ago, and I printed off the Spoon Theory. My Mom is coming for a day or two to visit, so i want her to read it. Maybe she can understand me a little more than she does.
Oh, my long term disability insurance claim was denied and I have been labeled by the psychologist who did a Neuropsychological Independent Medical Evaluation as having undifferentiated Somataform Disorder (look that one up, it mainly means I am a hypochondriac), adjustment disorder with mixed anxiety and depressed mood. Oh, what doctors come up with when they cannot figure it out! They should try being sick for 4 1/2 years, maybe they would be just slightly depressed as well?
I am hanging in there, and actually loving being back at work. Life is good, and I think I have to just start living with the Valerie I have become. I like the fact that I have lost 14 pounds since Thanksgiving because I cannot eat sweets or heavy meals.
Take care of yourself, and thanks for caring.
P.S. I've attached a picture of myself and my grand daughters taken in August 2007. My son married into a fairly wealthy Croatian family (thus my traveling to Croatia and how I contracted Typhus). His in-lawas have a summer place on the island of Hvar. We visited for the first time in 2007, and my older grand daughter and I like to sew togehter, so this is the quilt she made for her little sister.
06/04/2009 07:43 AM
Posts: 198 Member
Hi: Mona here (Kissmebaby) you can read my bio:
Have you been to a Rheumatologist for Antigen/DNA testing. They can tell you a TON darlin. Great practice.
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