Tuesday, April 16, 2013

How My Son Went From Couchbound to College

I guess that post title is a bit misleading because the honest truth is that we really don't know exactly what caused such a miraculous improvement in our son that allowed him to start college with his peers last August. Desperate for some way to help him and allow him to start college on time, after 18 months of near-total incapacitation, we tried dozens of new treatments that summer, so we aren't 100% sure which of them is really responsible for his dramatic improvement ... but we have some educated guesses.

A quick bit of background for those who are new to my blog: My son's history with both ME/CFS and Lyme disease is a long and complicated one. He first got Lyme in 3rd grade but seemed to recover fully from that and was very healthy in 4th grade. In 5th grade, he suddenly became severely ill and was diagnosed with ME/CFS (which I'd had for 2 years). He missed 60 days of school in 5th grade and only attended part-time in 6th grade, with home tutoring. Treatment with Florinef for Orthostatic Intolerance dramatically improved his condition at the end of 6th grade, and he went back to school full-time, re-joined the band, and was even able to play soccer again.

At the end of 7th grade, he got Lyme again. This time, he did not return to his normal baseline after treatment. He remained more fatigued, though treating with more doxycycline didn't seem to have any effect. Over the next 4 years, his condition worsened very gradually. He was still attending school but missed 25-35 days a year, with ever-worsening fatigue and cognitive dysfunction (and all the other typical ME/CFS symptoms). Finally, some strange symptoms alerted to the fact that he had another tick-borne infection, bartonella. A Lyme specialist diagnosed him with Lyme, bartonella, and babesia (all tick infections); our best guess is that he had these other infections all along but they were never tested for or treated back in 7th grade.

Treating tick infections that have been present for that long is a tricky business, and most people get worse (due to a herx reaction) before they get better. Our son got even worse than most after so long, with an 18-month long severe herx reaction that left him mostly incapacitated. He spent most of his junior and senior years of high school on our couch, struggling to catch up on missed work, but with the help of home tutoring (and many fierce battles with the school for accommodations), he managed to graduate on time. Although he'd had some gradual improvement, he still had a difficult summer (and only finished his high school work the day before college started!), but at the end of August, he improved dramatically.

Yeah, that was the brief version! So what changed last summer that allowed him to start college on time and even live on campus? Here are the things we tried and our best guesses as to their effectiveness:

Beta Blockers - We have no doubt that starting him on low-dose, extended-release beta blockers at the end of August played the greatest role in getting him back on his feet (quite literally). He felt an immediate improvement and is now able to walk all over campus without crashing the next day and has even joined the Ultimate Frisbee team. He still takes Florinef for OI (we tried reducing the dose and found he still needed it), but adding the beta blockers resulted in a significant improvement.

Increase Imunovir/inosine - He started inosine last spring (something I have had good success with, too), but it was last summer that I began very slowly increasing his dose. He now takes 4 pills a day - which is still lower than what is recommended - and I think inosine has helped to normalize his immune system somewhat so that he can better fight those infections. I've also noticed that virally-induced crashes have become quite rare for him (and for me) since inosine. Note that we started with prescription Imunovir (not available in the U.S.) and later switched to generic inosine, which worked the same for us (but is far cheaper), and that the dosing is quite complicated and must constantly change. It's all explained in that post on Imunovir/inosine.

New Supplements - This one is more of a guess, but we changed many of his supplements last summer, and I do think that has helped. We consulted with a biochemist/registered dietician who advised us on supplements based on his history, symptoms, genetics, and circumstances. I think that the most significant effect probably came from those supplements aimed at improving his methylation process (something I had started on my own before) to allow his body to better process both the medications he was taking for tick infections, as well as the toxins (i.e. dead bugs) released by the treatments. I think this is a very individual thing--choosing appropriate supplements based on symptoms and history--and we relied on the advice of the dietician/biochemist. In some cases, he was already taking certain supplements (like a multi-vitamin, alpha lipoic acid, and others), but the biochemist recommended a specific brand that she felt would be better absorbed and/or more effective. All of this has been very expensive, and we are not entirely sure which have helped and which are a waste of money. We've been afraid to change anything since he's been doing so well!

Eliminate/Reduce Artificial Dyes -  I really have no idea if or how much this helped. The dietician/biochemist said that artificial coloring can be toxic to many people, especially those with chronic illness. He was ingesting a lot of it because he drank 2-3 liters of Gatorade a day. The salt and fluids helped tremendously with his OI, but she was concerned that the artificial dyes were detrimental. We switched from Gatorade to Vitalyte, a more natural electrolyte drink with only natural colors (and not much of that). I have no idea if it helped or not, but the Vitalyte is actually less expensive than Gatorade anyway, and both of our boys like it. I think it has a lot less sugar in it, too. Later, when we realized that sugar was a big problem for him due to yeast overgrowth, we switched again to GU Brew tablets.

Trial of Gluten-Free/Dairy-Free Diet - Again, I have no idea if this helped or not. The dietician/biochemist suggested he try a restricted diet. She did not suspect food intolerances but said that people with ME/CFS just have trouble digesting gluten and casein (a protein in dairy), and that these substances can increase fatigue and other symptoms because they block one of the methylation pathways in the body. Our son was NOT happy about such a restricted diet, but he was a good sport and went along with it. I joined in for moral support, and he and I ate strictly gluten-free and dairy-free (I was already dairy-free) for 7 weeks. His improvements began several weeks after starting the restricted diet and he didn't notice any improvements in GI issues, so after 7 weeks, he added dairy back in first and then added gluten back a couple of weeks later. Interestingly, he did notice some GI issues worsen when he added dairy back, so on his own, he decided to limit low-fat dairy (it is probably a lactose intolerance since higher-fat dairy products like ice cream and full-fat cheese don't bother him much). That was 6 months ago, and he is still doing well, so I don't think the gluten and casein were a major issue for him...BUT it is possible that eliminating them for a while helped his body to recover and improved his ability to process toxins by temporarily removing that methylation block. Who knows? Note that we later both adopted a modified Paleo diet, which does help.

I think those were the major changes we made. Once he began to improve, there was a cascade of positive effects that built on each other. As a result of his improvement, he was finally able to gradually increase his dose of antibiotics to treat Lyme to a full dose (for a long time, he couldn't tolerate more than 1 pill every 3 days!), so we are finally seeing some progress in his Lyme/bartonella/babesia treatment. I think this is a critical point to understand: when underlying infections are present (Lyme, other tick infections or reactivated viruses like CMV, enteroviruses, EBV, HHV-6), as they are in many people with ME/CFS, you can't improve until you treat those infections, and the immune dysfunction makes it worse. It is a vicious cycle, and you have to address it all  - treat immune dysfunction and underlying infections.

The beta blockers allowed him to exercise again, and he gradually built his stamina up as a result--this is something I have seen, too. Being able to exercise without crashing allows you to build muscle and improve cardiovascular functioning, which in turn helps to improve your overall physical condition and well-being, allowing you to do even more. He slimmed WAY down as a result and lost the bloated look he'd had. He now walks all over campus every day, plays Ultimate Frisbee with his friends (he's not yet in good enough condition to play in their tournaments, but he practices with the team and is gradually building stamina), and is taking 3 classes each semester. He lives on campus in a single room and stays up late with his friends like any other college kid (though he can go to bed early when he needs to). To our astonishment, he missed only 3 days of classes fall semester and has so far missed only 1 day in the spring semester (the result of 6 straight hours of snowboarding!).

It all still feels like a miracle to us, and we are grateful every single day. I wanted to share with you not only the specifics of what we think helped but also the hope. I don't know whether he (or I) will ever be 100% well, but improvement is possible. He is so happy to be living among his friends, going to school, and resuming a somewhat normal-ish life.


Sarah Dawneé said...

Oh, Sue! This makes me so happy!
I celebrate Jamie's improvement. I am so glad that he is doing so well. It is such a blessing!

I am glad that he is also getting to enjoy college and doing so well.


Anonymous said...

Hi Sue,
Thanks for sharing your son's journey. Amazing story and makes me feel that there is hope with this CFS/ME. I am suffering from similar illness and none of the doctors in IL are able to give me a proper diagnosis. It's very frustrating and living in pain is getting hard. Thanks again for sharing this story. If anyone know any doctors in Chicago, IL area, please e-mail me at paladrk@yahoo.com. Thanks ravi

Renee said...

Such good news Sue, you all must be so thrilled!

Sally Burch said...

Very happy to hear this.... and making a mental note of what you think has helped. ;)

Annie said...

Thanks for writing it all down Sue. I'm so glad all is still going well for him.

Anonymous said...

Congratulations, great info too. I wish for both of your continued recovery!

Crumpet said...

I have just been diagnosed with lyme after 5 years of ME.I have just started blogging about my treatment.Thank you for the info on your son,you have all done so well!I have not heard of imunovir but I am in UK.I have a bit more hope I can recover as I have tried so much so far X

Sue Jackson said...

Hi, Crumpet -

Thanks for taking the time to stop by and comment. If you click on the Lyme disease category at the bottom of this post, you will see all of my posts on our experiences with Lyme disease (I had it for a while, too). If your Lyme has been present for many years before treatment, then you may experience a bad herx reaction (i.e. severe worsening of symptoms) before starting to improve. Read our posts on that and let me know if you have any questions - as I mentioned here, Jamie's was very bad.

And make sure you have been tested for co-infections - many people with Lyme have other tick-borne infections, too - and many doctors overlook this - without treating the co-infections,you can't get rid of the Lyme.

But hopefully, there is a light at the end of the tunnel for you!!

BTW, Imunovir is manufactured in the UK and is not available in the US (we buy ours from a pharmacy in Canada) - but I hear it is hard to come by in the UK - very ironic!

Good luck - and let me know if you have questions -


Crumpet said...

Thanks so much for your reply Sue. Your blog is so informative!I will check out your Lyme posts.I read your post on changing doctors as my NHS doctor is very unsupportive and not happy I am having tests done privately,but offers very little herself.I am not sure how it works in US for treatment costs,but I have to pay to go to a very expensive clinic which is the only one in UK as far as I know.I will ask them about imunovir and co-infections.I guess imunovir is expensive if it is rare in UK as cut backs are huge here and benefits unfortunately,but I could probably get it privately.I start antibiotic treatment in June so I will let you know if I get reaction,thanks!good luck to you and your sons as I know how hard it is to live with this.Crumpet

Anonymous said...

Hi Crumpet, my son and his girlfriend both have CFS/ME and also live in Lancashire UK. My son has had little help from his GP and has recently enlisted a private laboratory to try and help him. Its early days yet but they have found out a number of interesting things from blood and faeces samples. Perhaps we can learn from each other! Please contact me on blindlemonmeringue at hotmail dot com

Rachel and Pia's Cottage said...

Such wonderful news. I am glad for Jamie and you. :o)

Crumpet said...

Thanks I will definitely email!

Anonymous said...

Which beta blockers were your son put on and how did you persuade the doctors to prescribe them? Brilliant about his improvement! I've suffered from CFS/ME for 6 years now-I'm 19 and having to take time out of University at the moment as it was simply too much to keep up. I'm desperately looking for any way to improve my stamina/health!

Sue Jackson said...

My son takes nadolol, and I take propranolol, but there are dozens and dozens of different beta blockers to choose from, and it can take some trial and error to find the right one for you and the right dose. Click the beta blockers link in the text above for more information and tips on how to find the right one.

And there was no convincing to do! Our doctor thought it was a great idea and was very supportive. But we live in the US, and I gather from the wording of your note that you are not. Treatments for ME/CFS tend to be much more difficult to get in the UK and Canada.

Good luck!


PWC said...

Inspirational story! Have you or your sons tried Monolaurin which is an extract from coconut oil (and commonly available as Lauricidin) for yeast & bacterial infections? I have heard good things about Monolaurin from PWCs (Persons With CFS)

Sue Jackson said...

We do take monolaurin as an antiviral, but only when we are exposed to viruses. Also, I eat loads of coconut products so am getting it from those. My son hates coconut, though he does use coconut milk in his smoothies! I have also heard good things about taking monolaurin on a daily basis but we haven't tried that.