Wednesday, September 11, 2013

Treatment Update

I'm torn as I write this post. There have been a number of deaths in the lyme and CFS community in the past year.  Some have been decided to take their own lives while others died of "unknown" causes.   I want to honor them especially someone who was one of the people that started May 12 ME/CFS awareness day and was a big advocate in the CFS community. It's heartbreaking and it makes me angry that so many people continue to sit on the sidelines doing nothing but accusing us of malingering or think that what we need is a referral to a psychiatrist when the reality is that we need medical treatment. And we need research.

I get how the downward spiral can happen. It starts when one can no longer afford treatments. My doctor and I talked about how one needs to be rich to have and treat this illness.

I know I have a limited time left before I can no longer afford treatments. Without the treatment I'm on I'm bedbound. My doctor knows this too and is working with me on what to do.

We both agreed I need to get well enough to be able to work part time which would allow me to afford everything. As it is now I'm having to pick and choose the lowest cost treatments.

My doctor and I met for almost 2 hours yesterday. I was able to go see him in person thankfully.

I put an ad on craigslist to pay someone to drive me to and from my doctor's office. It's a 2 hour drive each way. I ended up "hiring" the only person who responded even though I had a couple red flags. He talked the entire way there so by the time I met with my doctor my brain was already fried.

I recorded the appointment using my iphone. As I listened to it I was struck by how weak and wiped out I sounded as well as how much I was struggling cognitively. I was having trouble speaking especially in complete sentences. If I closed my eyes and blocked out the fact that it was my voice I would think the person talking was very ill.

Once again, though exhausted, I was struck by how much improvement I've had since I was last there. I was able to tolerate a 2 hour drive there, a 2 hour medical appointment, a 2 hour drive back, and a little shopping trip (the guy who drove me wanted to stop by the Petaluma outlets).

I had a lymphocyte subset panel done by a local neurologist who was convinced I had HIV. It was abnormal but had nothing to do with HIV.  The CD4 count was high and CD8 low.

CD8 cells are closely related to NK cells. Both are low for me (NK very low). We discussed the need for me to increase both especially with the family history of cancer along with the fact that I've already had one pre-malignant polyp almost 2 years ago (I have to have a colonoscopy every 3 years now).

CD4 cells are high. They are like T helper cells.

The fact that these are abnormal suggests that something is tweaking my immune system. What didn't make sense to my doctor was the fact that my IgG subclasses (1 and 3) are low. Based on the results of the Lymphocyte subclass testing the IgG subclasses should be high rather than low.

Immunology is based on people who have cancer so there aren't good markers out there for people who have chronic illnesses.

I've been having a sensation on my legs and sometimes my arms of an ant or bug crawling on my skin. When I go to get the bug off there's nothing there. I've also been having a sunburn like sensation on my forearms but both issues occur so randomly that I'd been unable to figure out what's causing it.

My doctor said its due to neuropathy and the nerves being irritated. It could also be due to toxins but the fact that there is no pattern suggests something else.

I've been wondering why I'm so thin because I thought inflammation caused the body to gain weight. Being thin is also due to inflammation. I don't remember why. He mentioned Leptin when I suddenly realized I'd forgotten to turn my iphone voice recorder on so I missed the next few minutes of what he said.

He said that HHV6 is becoming a problem for me again and wanted to treat that. Since I'm having a flare up of gastritis (nausea and abdominal pain) he didn't think going back on Valcyte would be a good idea. He said that Mobic which is like NSAIDS can help boost Famvir but we had to discard that also because it can add to stomach issues.

He recommended an immune modulator. I'd already tried and failed LDN (it exacerbated neurological issues) so he recommended Immunovir. Because it will come from a canadian pharmacy it will be a few weeks before I can get it so in the meantime I'll start Inosine 500mg.

I need to get my heart rate down and get my blood pressure under better control. Basically we need to reset the autonomic nervous system. My sympathetic nervous system is on overdrive which is causing insomnia and early morning awakening.

To do that I'll start Iverbradine. Iverbradine is a medication used to treat chronic heart failure especially left ventricle types. It reduces the heart rate.

Once I've adjusted to the Iverbradine I'll add in Prazosin at night. Prazosin is an alpha blocker used to treat hypertension and congestive heart failure. It's used off label to treat sleep problems occurring with PTSD and Raynaud's disease.

I'll discontinue the Pindolol once its clear that Iverbradine will work.

Hopefully between the Prazosin and Iverbradine I'll be able to slow down the sympathetic nervous system.

Unfortunately Iverbradine isn't sold in the US so I have to pay out of pocket.  I need it though.

Sleep-Trazodone keeps me asleep for about 6 hours max. I also feel groggy and depressed the next day so I stopped taking it. I'll restart low dose Doxepin in the hopes it will work again.

He stated that some people's cortisol increases at night causing sleep issues so I'll add in Phosphatidylserine 1-3 at bedtime.

He agrees that Bartonella is an issue again so I'll restart A-Bart.

I told someone that I'd ask why many people with this illness feel worse in the Fall and Winter. He said because it rains more causing mold to do its thing.

Driving-he thought I was extra sensitive to the exhaust fumes and/or there is mold in my car. When I told him it had been flooded in El Cerrito and smelled like mold whenever I turned the a/c on he recommended getting it treated for mold. He also recommended trying a respirator/chemical mask when driving to see if I could drive farther.

He recommended charcoal for binding to toxins 5-10 capsules 30 minutes before a meal. The reason for taking it 30 minutes before a meal (especially one with some fat) is because bile is released and toxins are stored in bile (and elsewhere).

I'm exhausted and this is long so I'll do Part 2 tomorrow or Friday.


Anonymous said...

Please, please, please get a different car.

At Home on the Rock... said...
This comment has been removed by the author.
At Home on the Rock... said...

Very interesting, Terri -- Thanks for sharing all this info.

I too have that "sunburn" sensation as well as the "bug crawling on my leg" sensation (with nothing being there). I 'identify' this with my fibro though.

I've also came to the same conclusion (just on my own research from various sources) about my autonomic nervous system and my sympathetic nervous system being out of whack with the need to reset these.