We’re doing very well. We are either level or going very slowly uphill and I would guess the later. Our improvement feels pretty solid at this point. Incomplete, but the worst symptoms are gone or hugely reduced. If you remove the horrible downhills, and if you don’t have to spend much time at the bottom of the declines, it’s a life. In particular, we both feel that our brains are working well, bodies a little less so, but all in all, pretty fine, compared to where we’ve been. We are both so grateful.
Ali is completely immersed in NaNoWriMo. She has 15,000 words down towards the first draft of her post-apocalyptic vampire novel. She is living and breathing her story right now and it is more wonderful than I can say to see the light in her eyes. She has been attending the local NaNo writer’s meetings and she went out the other night with a friend for dinner. She rarely mentions her physical symptoms, though when questioned, she still has some. Like me, cheap stuff compared to where we’ve been.
Ali had an easier time getting on the drugs than just about anyone else that’s started. Because her sugar sensitivity was completely out of control and she couldn’t eat a speck of sugar without getting sick, and even though I knew that it would make it more difficult to tell what was going on, she was pretreated with Actos for two weeks prior to starting antiretrovirals. It had an immediate positive effect on her ability to eat normally. I’ve been reading about PPAR-γ agonists and the evidence supports it for consideration in this setting. Thus, I too started Actos two weeks ago, at very low dose. At 15mg, a week ago, it had an obvious salutary effect, with improvement in several prominent inflammatory symptoms.
Actos is a PPAR-γ agonist (PPAR-γ regulates fat and glucose metabolism). It is an NFkB inhibitor (anti-inflammatory). It inhibits VEGF (a vascular permeability factor which features prominently in Sandra Ruscetti’s PVC-211 rat model of neuropathogenicity). It reverses atherosclerosis and improves glucose utilization. Here are a sampling of papers and abstracts to give you the flavor, though the literature is vast. And for the record, lest I seem too excited, there is cautionary evidence in the literature as well.
- Therapeutic Roles of Peroxisome Proliferator–Activated Receptor Agonists. Staels
- Peroxisome proliferator-activated receptors: regulation of transcriptional activities and roles in inflammation. Blanquart
- Peroxisome proliferator-activated receptors and inflammation. Moraes
- Peroxisome Proliferator-Activated Receptor Agonists as Therapy for Autoimmune Disease. Lovett-Racke
- Nuclear Receptors and Autoimmune Disease: The Potential of PPAR Agonists to Treat Multiple Sclerosis. Lovett-Racke
- Peroxisome Proliferator-Activated Receptor-{gamma} Agonists Suppress the Production of IL-12 Family Cytokines by Activated Glia. Jihong Xu
- Pioglitazone attenuates mitochondrial dysfunction, cognitive impairment, cortical tissue loss, and inflammation following traumatic brain injury. Sauerbeck
I’m certainly not saying that it’s any kind of panacea. Lots of people have tried it. Like everything with this illness, it helps a few people a lot, more people a little and lots of people not at all. But it may be a different ballgame now that we are only looking for things to potentiate the positive effects and attenuate the negative effects of the antiretrovirals.
Actos, with or without metformin, is indicated in the treatment of PCOS, a syndrome characterized by multiple receptor insensitivities. PCOS appears to have a very high prevalence in second generation X infected women. Another clue…
I’m feeling happy, not angry at the moment, so I’ll spare myself the tirade about Dr’s Kearney and Malderelli’s unfortunate comments in print recently. Government doctors in a research setting casting aspersions on real doctors in the trenches. Please read this excellent blog commentary on the subject: The Tuskegee Mentality: Condemning Antiretroviral Treatment for ME/CFS by Larry Gilman (link). Amen to that.
>It is exciting to see where you are. Your blog gives me hope. I copied this page for the information on the different drugs to show my doctor, although I don't have much hope to get help. Please keep the progress reports coming whether they are negative or positive it helps us all. Thank-you.
>Thank you, Dr. Jamie! So happy to read this. May your and your daughter's success continue.
>This is great news. Thanks for the update and effort to post all the info.
>Congratulations on your continued improvement and continued good luck with it. Thanks for mentioning Actos – it sounds really interesting.
>You two are following the only known path out of this darkness. Pay no heed to smaller minds ;)
>Always so very glad to hear that you and your daughter continue to feel better. May this trend continue for you both.
The problem with the researchers is that the real doctors in the trenches are far too busy taking care of the sick people and just don't have the time to do the public stuff like publishing. So we get stuck with the Ivory Tower types who have never seen a real ME/CFS/FM sick person and wouldn't know what they were looking at if they did meet one. So we work around those idiots, as you and your brave daughter have.
Keep climbing upwards – you both give the CFS sick great hope. Thanks!!! Sharon
>Your posts are of critical interest Jamie. You and others like you who are going ahead with ARVs in spite of all the hypocrisy surrounding whether we should be "allowed" to take them are the closest thing we have to clinical trials right now. How you are doing on them day to day and month to month is all I really want and need to know at this point. I'm immensely encouraged by your journey so far. Thank you for sharing it. You give us hope.
>It's always interesting to read about your journey. It gives us hope. Thank you so much for having the courage to share it with us.
I always wondered if I was the only one to have a sugar sensitivity. Eating it makes my symptoms much worst but it's so strange how my reaction to it happens 5-6 days after eating it. When you say your daughter "couldn't eat a speck of sugar without getting sick", did she have the same kind of reaction I do? Thank you
>Thank you so much for sharing all this information, and in a manner that is comprehensible to most. I've also developed a sugar-sensitivity in the past few months, so this is very interesting too.
Wishing you both continued recovery.
Nicky
>I would love to try Actos but my sensitivity isn't just to sugar, it's also to yeast and dairy and I believe Actos has Lactose in it? I am the same as the other post in that I get bad 5 days after eating anything wrong.
>Such great News!!!
You and Ali are Such an inspiration to me. And I did not know about ACTOS. I plan on trying it now before embarking on my own personal trial.
How WONDERFUL it must be to watch Ali transform; and yourself as well. :+)
L,
~ k
ps. The Tusakgee article = stupendous.
>Please post again soon, Jamie! I count on your blog to buoy my spirits! Also, would you please describe in detail the difference between your physical capacity (energy envelope) now as opposed to before ARVs? I just want to be able to imagine the possibilities for myself someday. Thanks so much for the tremendous service you are doing for all of us.
>Thanks for commenting on the Actos- very interesting! Coincidentally, my doctor recently prescribed it for me as well but for a different reason (I am about to begin the Shoemaker biotoxin protocol, and pre-treatment with actos is supposed to reduce the effect of any symptom flares I might have while removing the toxins from my body). Like Ali, I am diagnosed with lyme and/or CFS and have trouble with sugar (it often makes me nauseous immediately after eating).
After ~10 days on Actos I too notice an improvement in symptoms. Better mood, less inflammatory pain, more energy. It's too early to tell whether this will be a sustained improvement or a fluke, but I look forward to any updates you two have…
>Thanks so much for your posting your experiences. I always look for any updates. I have been diagnosed with CFS/FMS/Lyme/RA. I just treated Lyme for 9 months with negative results. RA has gotten worse and I honestly don't know what to treat. Been at this for 18 years. Just want a few good years before the clock runs out. You give me hope that it might really happen.
>Thank you so much for sharing your journey with we who cannot go there – yet. You two are trailblazing pioneers, the major source of hope for many of us.
Re: Actos – do you think you will use this for the duration of your ARV usage? And is that, probably, for life?