Friday, May 04, 2012

Jamie's Slow, Gradual Improvement

I feel like I jinxed myself earlier this week by posting about how great I was feeling!  I am now badly crashed, in bed, with sore throat and aches.  I don't think it's anything I did, though.  The whole right side of my mouth and throat are sore, so it feels like an infection or immune reaction.  I'm taking lots of olive leaf and resting.

So, today, I thought I'd finally share some details about my son Jamie's very gradual improvement and what we think is helping him.  It's always a guessing game, of course, but a few things seemed to have made a definite difference.

As many of you already know, Jamie has been mostly bedridden for the past year or so, due to a severe herx reaction from his treatment for Lyme disease, bartonella, and babesia (two other tick-borne infections).  We tried everything to lessen the herx reaction, but nothing seemed to help.  Our Lyme doctor explained that Jamie's severe worsening over such a long period of time indicated that his body was having trouble getting rid of toxins properly (toxins in this case meaning the dead bacteria being killed off by the antibiotics he's taking for his tick infections).  He said it meant that Jamie's methylation process was blocked.  As I mentioned in a previous post, I recalled reading about this problem in CFS, so I did some research.

Three different doctors have studied the methylation process in people with CFS and have worked to come up with protocols for treating it.  This article by Rich Van Konynenburg explains why this process is blocked in people with CFS and how to treat it.  I read that article, as well as this Q&A by another doctor, Dr. Nathan.  I ordered some of the supplements recommended for Jamie, but we didn't see any effect at first.  Both doctors warned that treating the methylation block can itself cause a herx reaction, so our goal was to try to help improve this process for Jamie without making things worse, which is of course a real balancing act!

We started with sublingual B12 pills and the recommended folate supplement, Actifolate.  Jamie's CFS doctor was interested in this approach and suggested switching to B12 injections and to a prescription type of folate (L-methylfolate, brand name Deplin) which would both be better absorbed by the body.  Again, we saw no improvement.  Finally, I e-mailed one of the experts, Rich Van Konynenburg, to explain our approach and ask his advice.  It turns out that he is another CFS Saint, like Dr. Rowe, who took the time to not only read my lengthy story but to also reply in detail to every one of my questions.

He said the B12 injections were indeed the better choice, so we stuck with those (once a week), but that the prescription-strength folate was often far too much for CFS patients.  So, we switched back to Actifolate, I cut those in half, and only gave Jamie one half every other day.  We saw an almost immediate (though mild) improvement!  Lesson 1: you can have too much of a good thing!

About that same time, Jamie started taking Immunovir (I have described my own good experience with Immunovir here).  Jamie showed some improvement at the lowest dose (2 pills a day) but seemed to get worse when we started building the dose up, as recommended (I take 4 pills a day).  Once I noticed the pattern (it can take a while sometimes to tease out cause and effect!), I reduced his dose back to 2 Immunovir a day, and he has continued to do very well at that dose.  In fact, I believe that is what got him off the couch and back into school.  Lesson 1 again: you can have too much of a good thing!

Just last week I e-mailed Dr. Konynenburg again and told him what other supplements Jamie's been taking, including SAMe, which was recommended by our Lyme doctor to help with the herx reaction (SAMe is a supplement often used to treat depression but it is also effective for liver function which ties in directly with helping the body to get rid of toxins).  Interestingly, he told me that people with CFS often do not tolerate SAMe well; that it was originally a part of his own protocol but he removed it.  So, I took it out of Jamie's pill boxes immediately, and...this past week without SAMe has been one of Jamie's best weeks in over a year!  Lesson:  What's good for some people can be bad for others.

So, that is where he is now.  He is at least functioning now, after that horrible year of being completely incapacitated.  He goes to a class or two a day most days, has been able to work on his enormous pile of make-up work a bit at a time, and has even been able to take part in a few social activities.  In fact, he is resting right now in preparation for his senior prom tonight!  As you can imagine, we are all ecstatic that he is able to go!  He may not make it very late tonight, but he has a date, and a tux, and just drove himself to pick up the corsage.  Normal, healthy people just can't understand how big and amazing this is for him!  We are so very grateful.

When I e-mailed him, Dr. Van Konynenburg sent me a copy of his revised simplified methylation protocol which I have copied into another blog post (I didn't know how else to share it!).  This morning, as long as I was stuck in bed, I ordered the rest of the supplements listed there, and we will add them to Jamie's regimen, to see if they can help him to further improve and better tolerate his Lyme treatment.  Even though he is doing better, Jamie is a long way from well with very limited stamina and is still only able to tolerate 1 doxycycline pill every 2 days (Lyme treatment), so he still has a long ways to go.

But, he is making progress, one baby step at a time...


Elaine said...

Wow! So good to hear there is hope for him and for the rest of us!!!!! I also can NOT tollerate Sam-e. It tears my stomach apart and gives me horrible indigestion. (Not the kind that goes away with treatment):(

I look forward to reading all about the methylation. Interesting....

So happy that he's doing so much better. Hope and pray it continues.

Hope you get better soon too. I also get sore throats when I'm overtaxed....

Blessings and thanks for all your hard work here!

Harry said...

I would look into Pyroluria as a cause for your families symptoms. It is hereditary. I suffer from it, it took me 8 years to work out this was the cause of all my symptoms. Taking the recommended supplements have turned me back into a normal person.

I blog about Pyroluria now at:

Baffled said...

Glad Dr. Van Konynenburg's protocol is helping. I tried it myself for a while with no noticeable results but I had already brought up my B12 levels by using sublinguals for a year. Strange how what works for one person doesn't for another. Currently I'm having great results with sun exposure to boost vit D levels. It is weird how I no longer burn since switching to grass fed meats and eliminated most grains from my diet. Keep us posted on the protocol results. I've been curious how others have done with it. I might try it again once I stabilize my diet.