I'm finally beginning to improve a little from my bronchitis (and low white blood cell count), but yesterday, my 9-year old son, Craig, started to cough. When will this end? Between the two boys and me, we've had 5 cases of bronchitis in under two months. I don't know how my husband manages to stay healthy.
Craig doesn't actually have bronchitis yet - the doctor today said his lungs are still clear - but his sinuses are swollen again. With his history of sinus infection and our family's run of bronchitis this week, the doctor put him back on antibiotics today. His fever spiked up to 104 tonight. The poor kid is miserable. To make matters worse, it's state testing week at school here in Delaware, so he's missing that, too.
As for me, I'm going back to the lab tomorrow or Friday to recheck my white cell count. I also made an appointment today with Dr. Susan Levine in NYC. She's an infectious disease specialist and a well-known CFIDS doctor. She was recommended by a bunch of people at the immune support message board and is well-versed in using anti-virals for CFIDS. I was shocked to get an appointment with her for next week! I was worried she'd be booked for months.
I'm still pretty sick but am feeling good about seeing Dr. Levine next week. I know my family doctor will be relieved to hear it, too.
Thank you so, so much to everyone who has left me such wonderful, supportive comments this past week. I was really down, and it helped immensely to hear from all of you. I also got an amazing note from my oldest friend (thanks, Michelle!). Knowing I'm not alone makes all the difference!
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
Dear Sue,
ReplyDeleteI am sorry to read that you have been going through another rough patch.
However, I think you cope with these brilliantly - mostly remaining
positive which is extremely important to your well being. Of course you
are allowed your moments when the negative thoughts creep in, this is
natural. However, your positive outlook will be what finally gets you
through this.
I read with great interest the differences between the medical approaches
taken in different countries. I am from the UK, but I have spent quite a
while in Germany so I have experienced the approaches taken in these
countries first hand. Although there are many differences between the
health care systems in the UK and Germany, both countries have a similar
approach to CFS. This is a test, test, test approach. The diagnosis is made as a
result of a process of elimination, then you are given the label of CFS. During
this time you are given support in terms of physiotherapy, cognitive behavioural therapy and the option of alternative remedies if you wish to look for these.
Never have I heard of medication being prescribed for CFS. I think you are very brave to participate in drug trials. Do not get me wrong, this is a quality I admire and I believe you are a shining light to other sufferers. I just believe that it is risky to participate in drug trials.
I do not doubt that you are talking to the best doctors in the field. However, I am sceptical of each and every medicine prescribed for a number of reasons. Firstly, because I believe that a prescription drug was the principal cause of my illness. I don't think I would have CFS if I hadn't taken antibiotics as a teenager for acne. Secondly, so little is known about what is going on in the bodies of people diagnosed with CFS - it is not even known if this is the same for different people with the same condition. My understanding of CFS is that it is not an illness as such, rather a label for a set of symptoms. It is possible that a number of different causes are at the root of these symptoms. This suggests to me, and it is only my opinion, that it is unwise
to take part in drug trials especially when these drugs could be doing you more long term harm.
My approach has been to try natural remedies to deal with my symptoms, while at the same time investigating lots of possible causes such as food allergies, candida, Multiple chemical sensitivity syndrome (MCSS), Adrenal insufficiency, Vitamin B12 deficiency disorders: Pernicious anaemia, Intentional dietary deprivation, Intestinal disease associated with or independent of M.E ... the list goes on. This is where you need the support of your doctor or health practitioner. I have not cracked the problem yet but I feel I am getting closer.
I don't know much about your or your family's CFS diagnosis and the steps you have taken to try and resolve the problem - I have only been reading your blog for a short while. Have you tried changing your diet, looking at nutritional aspects, food allergies etc? Did you examine any herbal or alternative therapies? What were your doctors' advice on these matters?
I really hope things turn around for your whole family. I follow your blog with interest.
Stay positive!
Warm regards,
David
Well Sue, that's great that you get to see Dr. Levine so soon. I've been fighting the cough/cold that's going around too. I'm glad you're getting alot of support. You deserve it for writing such a great blog and sharing your story with all of us as it unfolds :) I'm on my 3rd week of Valcyte and so far I've noticed no change.
ReplyDeletefogggygyrl
hi Sue,
ReplyDeleteit's great that you got an appt. with Dr. Levine so quickly. I've heard good things about her and I hope she is able to help you.
So sorry to hear about your illness. I have had CFS for almost 20 years and it never gets any easier. I seem to get strep throat and sinus infections a lot because I have a toddler at home.
ReplyDeleteI just started a forum for CFS, Fibromyalgia and other chronic illnesses that you are welcome to stop by and join. It is brand new and there isn't much happening there yet, but I look for it to grow and to be a great place to come for support. Take care and hope you feel better soon.
So, how are you doing? how is the valcyte working? Are you over your bronchitis? Thanks for posting your day to day jounrnal. My daughter is interested in the valcyte drug.
ReplyDeleteI hope you are able to feel well soon. Good luck to you.
Hi, I like your blog, but I'm sorry to hear your children are also suffering from CFS. I pray my kids will be spared.
ReplyDeleteI wanted to let you know that I added a link to your site in my blogroll. http://livingwithcfs.wordpress.com/
I started an informative site for people living with CFS, as I am. I would love for you to check it out, and let me know if you have any suggestions, ideas, or links I should add.
I hope you are having a better day today. :)