Road We Didn't Expect to Travel

We went to Stanford again last week. It was an "interesting" trip in more ways that I had ever anticipated. While we were there for my medical care, it was our 4-year-old son who caused the most excitement when he had a seizure, seemed to stop breathing and prompted a 911 call and ambulance ride from our hotel. Seeing my son blue and unresponsive is an image that haunts my dreams by night. Since returning home, we have already seen his pediatrician and are currently awaiting an appointment with a neurologist. This is the fist seizure we have witnessed, but think we only "caught" it because he was sharing a bed with his siblings and they noticed his distress and called us for help. Based on the after-effects of this experience, in hindsight we believe he may have had prior seizures at night over the past few months that we didn't witness.

I gave 10 vials of blood for the Stanford Medical Center CFS research program and another 7 tubes to my own doctor. (I'll give another 8 or so to WPI when they come by for a blood draw tonight.) The primary positive outcome of my months of IVIG infusions seems to be the dramatic reduction of my fevers. I realized just how out of the ordinary I've been when Dr. M. did a double take and turned around with the word, "Seriously?" when he realized I've spent years on end running 100-101 degree temperatures on at least a weekly basis (often several times per week). To have this trend broken (now it's maybe once or twice a month) is significant in his mind. On the negative side he explained that I could remain reactive (hives, breathing issues, etc.) to the IG for up to 7 months, but that these reactions should gradually resolve month over month.

I have started a new therapy on am planning to take the antiviral drug Acyclovir for the next year. At this point I have not yet found a doctor or researcher ready to start me on an antiRETOviral drug, but the Acyclovir seems to be a step in the right direction. I've been cautioned that I must self-regulate and "keep my world small" this year even if I start feeling noticeably better, to avoid relapse.

Honestly I'm quite exhausted right now. I've been in bed solidly since Friday, both sleeping extended hours and weak, weary and in much pain even when I'm awake. The emotional drain of our son's emergency, compounded with the physical strain travel always inflicts on my body, and I'm afraid it's going to take me a while to get my feet back under me. I've mentally written this blog post several times, but just haven't had the energy to actually type it. Even before our trip it was taking me 20 minutes to compose a 3-sentence email, so as you can imagine, typing anything coherent is even more challenging now (and I'm giving my spell checking a real workout!). Hopefully the Acyclovir will help offset some of the impact of this "crash" and I'm so thankful for my sweet husband, the help of extended family and the support of wonderful friends in the meantime.

What is CFS?

May 12th is Florence Nightingale's Birthday, a day that has been claimed by Chronic Fatigue Syndrome (CFS) patients (along with Fibromyalgia and others) to increase awareness for this disorder. I had wanted to write an informative blog post, but honestly I just don't have the energy right now. So instead I'll clip and paste some information I posted to Facebook this morning, along with the answers I've replied to the questions people have asked me since that post.






Before taking on CFS, I wanted to flag a post I just made on my book blog, pointing you to some beautiful give-aways for moms of HeavenBorn (miscarried, stillborn, infant death, etc.) children. Most entry deadlines expire today or tomorrow, so please be sure to visit and pass the link on to a grieving mom you might know:
I've posted several give-aways for moms of HeavenBorn babies at http://hannahshopebook.blogspot.com/2010/05/heaven-born.html






And now, to my story (in limited characters for Facebook posting purposes)...

Had back-to-back mono then chicken pox when I was 8, followed by abdominal pain, eventually diagnosed as Endometriosis. Fibromyalgia began around age 15/16. Hard CFS crash at 18 (20 years ago in Sept), mostly bed- /home-bound for the next 4 years. Had some "moderately" sick years and battle through infertility /miscarriage. CFS relapsed significantly 3 years ago when our youngest was 1. Positive for retrovirus XMRV

In reply to a friend who commented on the 4 year journey to her Endometriosis diagnosis and her thankfulness that I have so much support...

Yes, I have been VERY blessed with supportive family who love me and advocate for me. Most do not have this.

I wasn't diagnosed with Endo until I was 16 (then it was only "probable" because I did not have a laparscopy to confirm until I was about 25), but pain started at 8 and grew increasingly worse from puberty onward. I started BCPs at age 16 to manage pain, crazy cycles and excessive bleeding.

Interestingly enough, a hysterectomy at age 36, while helping with much of the Endometriosis pain, did not resolve all abdominal pain issues. I have since learned that abdominal pain, especially on the right side, is common with Fibromyalgia (irritation to the psoas muscle) and to CFS (gal bladder, liver and other digestive issues). While three different surgeries verified Endo, some of the pain I had always attributed to the condition were probably related to other underlying health issues instead.

My CFS diagnosis took just 7 months - amazingly fast since CDC requires a minimum of 6 months of illness and ruling out of all other potential causes before it can be labeled. But I was SO SICK and when all other tests came back clear, that's the label that was left. Since the CFS onset (accompanied by another round of mono), I've had chicken pox about 6 more times, so I really believe my current health issues probably stem back to what my body dealt with when I was 8, when I personally speculate XMRV likely came on board.

Fibromyalgia wasn't diagnosed until my early/mid 20s, though I had been symptomatic for about 10 years already by that point.

To a friend commenting on just how young I was when health issues arose, wondering about the ages of our living children, and asking about XMRV I replied:

Our sweet miracles are 10, 7, 4. We started TTC (trying to conceive) shortly after my 20th birthday. I will be 38 this summer.

XMRV (click here to see all my previous posts on the topic) is the 3rd infectious retrovirus discovered in the human population. A retrovirus differs from a regular virus in that it actually writes itself directly into my genetic code, becoming part of my own DNA. HIV is the most well-known retrovirus, so that gives you an idea of how serious this could be and why I've been so very sick for so long. More information about XMRV and XMRV- Associated NeuroImmune Disease (XAND) can be found at http://www.xandxmrv.com/.





Last October a local, privately funded research institute, The Whittemore Peterson Instiitue (WPI) published the first Scientific paper linking XMRV to CFS, a retrovirus that has also been linked to a specific form of prostate cancer. The scary part is that nearly 4% of the healthy control patients used in the study also tested positive for XMRV meaning many "healthy" people in the general population could be carrying and spreading another AIDS-like virus and not even know it yet! Several counties are now banning blood donations from CFS patients as XMRV continues to be studied.

Unfortunately, this discovery is being largely ignored among those who could make a difference in funding for further research.

Instead of "opening the can of worms" of acknowledging this potentially massive public health threat, most would rather sweep it under the carpet (as they have been doing for a good 25 years), classify it is a mental/psychiatric disorder (rather than physical illness), or just ignore it all together.

Thank you for entering into my world with me for a moment and learning more about CFS. If you have any questions for me please post them! I will do my best to share information and experiences from my perspective. Updated information has been posted July, 2010 at More on XMRV including an outside link to a very-well ordered Timeline of XMRV.

Post Mother's Day Blues

This time 16 years ago I was suicidal. My life is so very different now. I have so very much to be thankful for. I am blessed beyond words! My kids and hubby spoiled me like crazy yesterday and we in turn were thankful for another year to spend with our own loving moms. So why on earth am I fighting those nasty old post-mother's-day-blues that became so ingrained into my life during our infertility years?

I still miss my babies. I love the three I've been given here on earth fiercely, and I would grieve any of of them with great anguish would the Lord decided He was calling any one of them Home before me. But none replace the others that I still miss and I don't think there's anything wrong about admitting to that reality that days like Mother's Day are strong reminders of who isn't here.

I ache for many friends
- the after-infertility babies of my sweet friend Shelly who just spent their first Mother's Day without their Mommy after breast cancer took her Home early.
- the after-infertility mom who probably just spent her last Mother's Day with her two miracles as brain cancer continues to steal away more and more of her life
- my friend who still battles through PPD as she faces the 2-year-anniversary of her daughter's death (on Mother's Day)!
- sweet Lori and so many like her who face their first Mother's Day visiting their children at his or her grave
- my single friends who long for families of their own
- the lady who refused a plant from me at church yesterday (and so many like her, like i used to be) with that defiant "I'm not a mom" response that I remember all-too-well

*sigh*
I am blessed. I am thankful. My heart aches with "survivor guilt" and today I need to take the time to grieve afresh before I can move on with renewed joy.

Not Alone

If you are facing infertility or the death of your baby this Mother's Day, I've posted several resources this week at HannahsHopeBook.blogspot.com that I pray will encourage you. {hug}

And on a different note, while did not write any of the following,I love that I'm not alone in this journey:
Why I decided to Homeschool My Kids Despite My Chronic Illness

This N That

As National Day of Prayer draws to an end, I've just shared my thoughts on Mother's Day and resources for infertility/loss related to this holiday on Harvesting Hope from Heartache™.

The Women's Health Hero voting has been extended from May 7 to May 14, so please feel free to continue sharing my profile link! We are up to 200 votes and currently in second place. On a very liberal website, I don't see these votes so much as being personal votes for me, but votes speaking affirmation of the gift of life when my profile is paired against several abortion-advocacy and other feminist nominees. (There are also some very cool and worthy profiles listed there, and I've actually added my own vote to several other profiles, but most of the lead vote counts are currently going toward abortion-related women.)

Here's a writing challenge I hope to enter, if I have the physical energy and mental focus in do the writing in the next few days: Hope to Cope with Pain

One day left to take advantage of a 10% discount on Affordable Mineral Makeup™ over on my InnerBeautyGirlz page. :)

And related to CFS/XMRV, here's a rather technical, but interesting and important letter from Judy A. Mikovits, PhD, Director of Research, Whittemore Peterson Institute, Reno, Nevada (whom I consider a personal champion in my battle for health) to the editors of the Bulletin of the International Council for CFS/ME.

Vote for me as a Health Hero?

I was blessed to be nominated as a Woman's Health Hero and I need your help! (Head's up to my friends who are sensitive to mentions of pregnancy, the sponsors of this award do promote pregnancy-related books on their website, so please be for-warned before following this link.) Out of all entries, just 20 names will be inducted into a Health Hall of Fame. Two Hall-of-Fame selections will receive special honors as either Staff Pick or Audience Choice award determined by the public (that's you!).



You will be allowed to vote on all entries between now and May 14 (extended one week from the prior May 7 deadline), 2010. The entry that receives the highest overall ranking will win the Audience Choice award. Last year's Audience Choice winner was my dear friend Lisa Copen from Rest Ministries. I would be delighted to add a similar honor to my "resume" as I continue working on writing my book on the life of Paul as encouragement for living with chronic pain/illness.

Will you please help me by heading to www.ourbodiesourblog.org/blog/2010/05/comforting-those-with-fertility-challenges-jenni-saake and selecting the "thumbs up" voting button at the bottom of my profile? Thank you so much! :)

Links to Read

I note this as "my most personal blog" in my blog list, and today I'm using it in a very personal way, as a journal or notepad to jot down some links I want to go back and read but just don't have the energy to fully comprehend right now. You are welcome to read along with me and/or comment about anything I link too. I can't promise you that I fully agree with or endorse anything in the following links because I haven't screened them - remember, that's why I'm posting them here for myself to read later. ;)

National Institute of Health CFS research statistics - I have read this one and am blown away by it. Just want the link handy because I never will remember it otherwise. Most eye-opening quote (beside the amazing lack of funding) is, "...patients with [CFS] experience a level of disability that's equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, patients with multiple sclerosis..."

Another CFS Blood Donation Ban Australia follows Canada and other countries in blocking CFS patients from blood donation due to XMRV retrovial potential for infection in blood recipients.

For Disable Parents

The Devastation of a Disease

And from the facebook page of Whittemore Peterson Institute today:

Dr. Bell makes a personal appeal to send funds to WPI to speed progress of research

Today at 1:39pm
David S. Bell MD, FAAP
Lyndonville, NY 14098

May 1, 2010



To my friends with ME/CFS,

I would like to put out a personal appeal for funds to be sent to the Whittemore-Peterson Institute (WPI) in order to speed up the progress of the current research. Here is my reading of a very complex situation.

Medical authorities, educational institutions, governmental agencies, and most practicing physicians have disrespected and minimized CFS in just about every way possible, from creating an insulting name for the illness to advising extreme caution in treatment, except cognitive behavioral treatments.

It is easy to dismiss my remarks to follow by saying that I am biased. And it is true, I am very biased and for twenty-five years I have quietly sat on the sidelines believing that science will win out and true progress will be made. I am beginning to think this has been a great mistake. The profession I love has failed miserably.

In 1985 an outbreak of CFS hit Lyndonville NY and affected 210 persons, 60 of whom were children. The official response from the CDC and the New York Health Department was that this was mass hysteria. No one talked with a single patient. In 1990 I worked with Dr. Elaine DeFreitas and Dr. Paul Cheney and a retrovirus was found and the material published(1). A second paper had been accepted by PNAS and contained a photograph of C-type retroviral particles from a tissue culture of spinal fluid of one of the children in the Lyndonville outbreak. This paper was suddenly pulled and not published after a couple of flawed negative papers. A complete description of these troubled times is in Osler'sWeb by Hilary Johnson. The funding for our studies was pulled and all work on this abruptly stopped.

I think the same tactics are being employed to hamper the current work on XMRV by the WPI. The WPI is a private organization and, as I understand it, no federal grants or funding has been forthcoming. There have been three negative PCR-only studies, which have established only that CFS cannot to be superficially studied. At this time no study that has attempted to replicate the WPI study has been heard from. Many CFS research organizations have declared publically that "XMRV is a dead issue."

Nothing is farther from the truth. I cannot predict the future, but my fear is that the current political and scientific organizations who do not want to see retroviral involvement will attempt to stifle studies on XMRV in CFS. Huge amounts of money are spent on studies on cognitive therapy, and studies proving that CFS is heterogeneous (you can argue that polio is heterogenous).

We have not heard from the CDC, other than the inappropriate comment that this was not likely to turn out to be anything, made right after the Science paper publication in October 2009. We are now eight months later and not a peep. Maybe they are finding XMRV and want to be very careful. Maybe they haven’t looked and are assuming that this heretical idea will blow away. Eight months? And the Band Played On.

It is possible that thirty other labs are finding XMRV in CFS or that no one else in the world is even looking for it. Science requires that labs do not disclose their findings prior to publication and I agree with this rule. But is the WPI going to be isolated by the scientific community and wither away because of lack of funding? Is XMRV going to become more of the compost of CFS research?

But there is an alternative. We cannot wait ten years for science to grind outs its conclusions. Every person in the world who believes that CFS is important should send $10 to the WPI. I plan to send $10 today. It may not be much, but it is a start. There may be 10 million persons in the world with CFS. Lets see, that’s…I need a calculator. May 12 is our day. Lets do this.

After 25 years of work in this field I do not have much. But I have my integrity. I feel that WPI has made an important discovery and I feel they are an ethical organization, they are not padding their pockets. But I also have my fears. And the greatest fear of all is that their discovery may not be appropriately followed up.

For the 9,999,999 other people out there who think CFS is both real and important, send $10 to: Whittemore Peterson Institute, 6600 N. Wingfield Parkway, Sparks, NV 89436.


Thank you.

David S. Bell MD, FAAP




1. DeFreitas E, Hilliard B, Cheney P, Bell D, Kiggundu E, Sankey D, et al. Retroviral sequences related to T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci. 1991;88:2922-6.

Quiet Sunday in Bed

I did too much this week. There's not one part of it I would have wanted to miss, but I sometimes resist living within the limits of my body and end up paying the price for overextending.

Both of the younger kids were away from home with friends or family for much of the week, so Joshua and I snuggled down in bed and plowed through nearly three weeks worth of school work that had fallen behind during my IVs this year. It felt so wonderful to be so productive and we both are thrilled with the accomplishment!

On Wednesday morning two wonderful friends from church came and cleaned my house while I chatted from the recliner. I felt guilty and lazy, but also quite blessed. (In reality I was running a fever the whole time they were here and would have been in bed otherwise, but how could I not "feel lazy" when others are cleaning my house for me?)

That night Rick drove the boys and I (our daughter was visiting grandparents for several days) a few blocks from home to enjoy ice cream together as a family. Just an easy, simply, normal family thing.

On Thursday morning I woke up tired but was functional enough to drive my kids the 10 minutes to homeschool co-op. I used my wheelchair there then drove them home again. Dinner had been slow-roasting in the over for hours, so I came home and collapsed into bed. Got up long enough to eat with the family, then back to bed and didn't get up again until after 1 on Friday afternoon!

Friday evening Rick took the kids to a movie and I hosted Bunco for some friends from church. I sat every chance I could and let others share the workload, so really my main energy expense was rolling dice and simply processing conversations. We had a blast! This is the kind of thing our home is made for, the social interaction that makes me feel alive and joyful and fulfilled. It's been a good solid few years since we have had anyone other than family in our home (other than a couple of kids birthday parties more than a year ago) and I was thrilled to see this huge house filled with fun and laughter. But by the end of the evening I could hardly put together a coherent sentence and my mental fatigue was evident.

Yesterday morning I joked with my husband about my inability to process thoughts into words. I laughed, he frowned. He reminded me of my doctor's cautions that when I'm like this it's literally because my brain is "fried" and short-circuiting and I've pushed myself much too far beyond wise thresholds. :( He's right of course, but I didn't like hearing it.

We agreed that I probably could have done either co-op or hosted Bunco, but trying to do both in the same week was too much for my body. In the future I will have to be careful to schedule special things like this for weeks when I have nothing else happening, so that basically means summers will probably be the only time I can plan such hospitality even with the help and support of such great friends as co-op runs Sept. - Nov. and again Feb. - May.

I spent much of yesterday in bed but my body was fidgety and I couldn't sleep. By evening I was experiencing my "ice-pick" stabbing, roving, random pains, a bit of muscle twitching, and hives. I had a hard time getting to sleep last night, but after benadryl for the hives around 11PM, slept amazingly well other than strange dreams all night.

This morning Rick loaded the kids in the car for church and I've been in bed ever since and see how very wise Rick was to be firm in his request that I stay home. I am so blessed by such a loving husband. Yes, I probably could have pushed myself to sit through an entire sermon if I went in my wheelchair, but it certainly wouldn't have been a wise move. Even in bed my body feels almost too heavy to endure the effort of laying still, deep aches run the course of my back and limbs and a different kind of pain fills my head.

I haven't been able to actually sleep much this morning, but our bird is keeping me great company, I've done a tiny bit of writing for my Paul book, and I've gotten a couple of blog posts auto-set for future posting on my Hannah's Hope book blog (that is finally active again after a year of posting technical difficulties - please find it at its new home at HannahsHopeBook.blogspot.com ).

I would like to try to take a shower before they bring home our lunch, but I'll see how I feel when I climb out of bed before I commit to that energy expense. Our neighbors are having a birthday party tomorrow night and I was going to get the family all settle there before running over to writer's group. Guessing writer's group is totally out of the question now and I'll have to hold hopes of attending the birthday party very lightly, realizing that the rest of the family may well have to go without me. :( I didn't make it to writer's group last month either and probably won't next month (because it will be less than 2 weeks after my next Stanford trip and I probably won't be functional enough). It could well be that my next chance to leave the house doesn't come around until homeschool co-op again this Thursday!

Updated 2 hours later to say I never managed that shower. At lunch my 7-year-old informed me that my hair looks "snarly and wet" (greasy). Yuck! Maybe I'll shower tomorrow...