Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tracking my efforts to beat Myalgic Encephalomyelitis (ME), aka CFIDS, aka CFS

Tuesday, April 30, 2013

Trying to rule out Lyme when you have ME/CFS: not easy!

When you have ME/CFS, from time to time, people will suggest that you might actually have Lyme disease.  The symptoms of Lyme are virtually identical to ME/CFS.  In fact, Dr. Paul Cheney apparently believes that ME/CFS and borrelia infection (the bacteria that causes Lyme)  are "exactly the same" illness.  He states that borellia just happens to be the trigger of ME/CFS's cascade of symptoms for some, while for others, the trigger is some other pathogen.  Basically, there are different routes to the same destination, borellia being just one of many.  (Again, this is an oversimplified paraphrasing. The full comment can be heard here at 13:00 to 16:32)

If that's the case, does it matter if you have Lyme of ME/CFS?  Yes, actually it does matter because your treatment options will differ if borellia is at the root of your illness.  In that case, long courses of antibiotics are usually indicated.  But if you don't have borellia, or some other chronic bacterial infection, most doctors will tell you to stay away from long courses of antibiotics.  Antibiotics will destroy your "good gut bacteria", potentially weakening your immune system, so it's best not to use them unless necessary.

So it becomes pretty important to know if you have Lyme or not.  But of course the problem is that Lyme tests are notoriously inaccurate.  My results to a Western Blot test were negative, but if you believe some, that means virtually nothing.  People will tell you that you have to find a really good LLMD (Lyme literate medical doctor) for a diagnosis based on a clinical evaluation.  I'm extremely skeptical of this.

Without a specific recommendation from someone I trust, I can only search the internet for so-called "Lyme experts" in my area.  There are a few.  But when I look carefully about what other patients are writing about these doctors, it seems that they basically diagnose anyone with a pulse with Lyme disease.  I don't want some B.S. diagnosis just for the sake of a diagnoses.  Call me crazy, but I want to know whether I actually have borellia in my system or not.  You wouldn't think it would be too difficult to get an answer, but apparently borrellia is just that tricky.

In the absence of an easy answer, I had recently decided to ignore the Lyme issue for now while I worked on other issues (like methylation).  But, as luck would have it, my friends at HealClick recently posted this great piece on more advanced Lyme screening options.  It really is worth the read.

I do wonder how difficult it will be to get one or more of these tests ordered, however.  I will look into it at upcoming doctor appointments and update this post later.

Friday, April 26, 2013

Treating with thyroid hormone for ME/CFS: Dr. Cheney says it's a bad idea

In a recent lecture by Dr. Paul Cheney, he states why he believes it is not a good idea to treat with thyroid hormone for ME/CFS.  See from 22:00 to 25:50 in this video.  In short, he believes that the brain responds to ME/CFS by intentionally down-regulating thyroid, forcing the body into a low metabolic rate.  This is because the body 'knows' that it has lost the ability to deal with oxidative stress.  Therefore, the body shifts into a low metabolic state in order to create less oxidation, a measure which Dr. Cheney describes as literally "life-saving."  I believe he is referring to the tendency of oxidation to lead to cancer, but I could be wrong about this.

Dr. Cheney  states that he can tell if someone truly needs thyroid supplementation by their blood TSH level.  TSH is Thyroid Stimulating Hormone--the chemical signal that the brain (the pituitary to be exact) sends to the thyroid gland telling it to produce more thyroid hormone.  Dr. Cheney says that people who are "true" hypothyroid cases actually have high TSH levels, suggesting that the brain recognizes the need for more thyroid hormone and is sending the signal stronger (but for whatever reason, the message isn't being received.)

In ME/CFS patients, on the other hand, TSH is usually low (mine is) suggesting that the patient's low thyroid function is 'intentional' on the part of the pituitary.  *I did some liberal paraphrasing here, but I think it's an accurate summary of Dr. Cheney's views.

You can imagine my concern given than I have been taking thyroid supplementation on the recommendation of one of my ME/CFS doctors, since January, 2012.  There's no question that it has made me feel better and has certainly improved by low body temperature issues (although it hasn't solved them completely).  Now I don't know who to believe and I have a difficult decision to make.  Coming down off of thyroid hormones will not be fun.  I need to do a little more research and ask for more opinions, but I know which way I'm leaning.

*Thanks to the excellent blog CFS Patient Advocate, which is where I found the Cheney video linked above.

Thursday, April 25, 2013

Is the Rifampin working?

I wrote in an earlier post that my ME/CFS specialist, Dr. C, recommended a drug called Rifampin that has been shown to "correct" the flagging immune systems of some PWMEs.  Dr. C prescribes a one week course of the drug.  When it works, the patient usually develops a flu about one to two weeks after starting the drug (so, sometime after finishing it).   I started Rifampin two weeks from yesterday.

I woke this morning feeling crashed and flu-ish.  My wife asked, "could it be from that medicine?"  To be honest, I had forgotten about the Rifampin when nothing happened after about 10 days.  Just another failed experiment, I figured.  Plus, it seems like months ago that I took Rifampin.  I had to check and recheck my calendar to verify that it wasn't.

I dragged myself in to work today and, as I started to feel worse and worse, I gained more and more hope that this could be it.  This could be the flu that resets my immune system.  I'm perspiring on a cold day!  I'm achy all over!  I can barely sit up in my desk chair!  Sniffles!  Surely I have a fever.  Hallelujah!

...until I took my temperature with a spare thermometer from my desk drawer.  97.7.

I suppose that this "flu" that Dr. C speaks of might not require a fever, per se, but somehow I doubt it.  Probably this is just another crash...the worst in months.

As of yesterday, I was scheduled to examine witnesses in two all-day depositions today and tomorrow, but thankfully they were postponed late yesterday afternoon.  I would have been in a "world of hurt" if I were trying to take a deposition today.  Now, I just have to hold on for the next two hours, pick up my daughter from daycare, drive home and get in bed.

Saturday, April 20, 2013

Treatment and Personal Update

Rifampin:  As I described in this post from March, Rifampin is an antibiotic that also has antiviral properties which have helped a number of ME/CFS patients improve dramatically, according to one of my doctors, Dr. C.  Dr. C advised me to take Rifampin when I had time off of work because, if the drug had it's intended effect, I would undergo strong flu-like symptoms.  The idea is that the flu is supposed to "kick the immune system back into regular functioning."

This past week, I took time off of work to bond with my new daughter, so I also seized the opportunity to take the Rifampin.  So far, nothing has happened.  If something was going to happen, it's supposed to happen about 7-14 days after beginning a week-long course of the drug.  I began taking Rifampin about 10 days ago and finished 3 days ago.  It doesn't feel like anything is going to happen, but I wasn't holding my breath anyway.

Nutrigenomics:  I'm still implementing Step 1 (Basic Supplement Support) of Dr. Yasko's plan, and taking my time with the process.  Trying to be patient.  In the meantime, I received results of a blood ammonia test which confirmed that I have high serum ammonia levels (the highest number it can be without being out of range.)  This is more confirmation that I have the CBS & BHMT mutations, so I hope to use these results as further motivation to stick with the Yasko protocol.  The protocol is somewhat expensive and a hassle to track, but when I put all of the evidence together, it seems abundantly clear that my methylation cycle is deficient and needs to be treated.  (For background on this, see the Nutrigenomics tab on the right-hand side of the page).

Personal:  Having a second baby around the house certainly has not been easy, but at the same time, it has not been as difficult as we had been lead to believe by others.  Some of our "couple friends" had cited the mantra that 2 kids somehow equals 3 times the work.  So far, it hasn't been that bad.  Of course, it's been harder on my wife because she's the one who stays awake half the night breastfeeding, but even still, she agrees that it's been about as much extra work as we would have expected--that is, about double.

Right now, 3 of the 4 of us have colds, my wife being the only one that was spared (so far.)  It's hard to see my newborn daughter struggle to breathe through a stuffy nose, but there isn't much we can do but wait and occasionally use a rubber-bulb nasal aspirator.  As for myself, I started attacking the cold with zinc, liposomal vitamin C and thymic protein at the first signs of symptoms (5 days ago), and I truly believe these treatments worked.  Some cold symptoms still linger (sniffles & slight cough) but it doesn't seem to be making me feel much worse.

In the meantime, I returned to work yesterday and learned that one of my cases is likely to go to trial in mid-June.  I had sought a continuance, and had very good reasons to support this request, but the judge inexplicably denied it.  This means that the next two months will be insanely busy, and that I will have to conduct a two-week federal jury trial with millions of dollars at stake.  This upcoming trial makes the last trial that I wrote about in February seem like a mere traffic court hearing.

My firm has already determined that I will act as lead counsel for the trial, but the good news is that I will have a second attorney helping me.  If I have a crash in the middle of trial, I will have to "power through" somehow, but it is also nice to know that I have backup.  What I'm more concerned about is the large volume of work and long hours that are ordinarily required to prepare for trial.  I've asked the firm for extra support and "manpower" so that I don't have kill myself just getting to trial.  Before ME/CFS, I might have tried to handle it all myself, working 14 hour days and weekends. Now, no.

With two sick babies at home and a major trial on the horizon, it's unlikely there will be many times in my life as chaotic.  But a few years ago, this trial might have made me more anxious.  The combination of having kids and getting ME/CFS has given me perspective about what's most important.  Of course, it's always easy for me to sound calm when, as now, I'm feeling fairly decent today.  Let's see how I feel when it's, say, 3 days before trial and I'm in the middle of a crash.  When I'm at my baseline, it's often hard for me to imagine ever crashing again, until I do, and the cycle starts over.  For now, I try to focus on the sense of accomplishment I will feel when the trial is over.

Wednesday, April 10, 2013

Proof that the paleo diet is NOT dangerous

I now have personal proof that the paleo diet is not dangerous, as some claim.

I've been on a paleo diet for about a year and a half and it has completely eliminated my gut symptoms and has also cut down on Candida overgrowth in my intestines (as evidenced by Candida antibody tests.)  Incidentally, I have lost about 20 pounds since going on the paleo diet, but that was not my goal, and I would actually prefer to gain some of it back.

Since the paleo diet seems to be a trendy topic these days, I read a lot of articles on it: both pro and con.  Those who are against the paleo diet cite studies that show a correlation between red meat consumption and arterial blockage.  This always concerned me because the aforementioned correlation seems pretty solidly established in the medical literature, and has been for decades.  On the other hand, if you believe the pro-paleo crowd, red meat only contributes to arterial blockage when we eat pro-inflammatory grains, sugars, and dairy along with the meat, which creates the inflammation that allows those nasty lipids to stick.

Recently, while tracking down old medical records, I noticed that I had had a lipid panel performed in August, 2010 -- about a year before I went on the paleo diet.  So I realized that all I needed to do was have another lipid panel performed and compare the results.  Then I would have my answer as to whether paleo leads to dangerously high cholesterol levels.  I really hoped that wouldn't be the case because the diet has helped my ME/CFS symptoms so significantly.

Before we compare my before and after results, let's compare my typical daily diet before and after paleo.  Notice, I am not a strict paleo person, as I eat cheese in small quantities and a couple other minor things that some would consider cheating (olive oil, for instance).  While there are many different versions of "paleo," my main mantra is "absolutely no bread or processed sugar."  I stick to that religiously.

Before Paleo 

Breakfast:  Bagel, or cereal with lowfat milk, or a banana

Lunch:  Chicken burrito with corn chips, or a sandwich with potato salad; diet coke

Dinner:  Pasta or pizza or (occasionally) frozen TV dinner; salad; water.

Dessert:  Non-fat frozen yogurt, or cookies, or pie

After Paleo

Breakfast:  A whole large avocado, or 3 scrambled eggs, or full-fat goat milk yogurt with fresh berries.

Lunch:  Almost always a salad with chicken - olive oil for dressing; water.

Snack:  Walnuts or macadamias

Dinner:   Roast chicken or turkey, or grilled beef with steamed veggies; salad; water

Dessert:  Usually none; sometimes fresh berries

So the main thing to notice is that I eat a lot more fat and cholesterol now than I did when I had my first lipid panel 3 years ago.  And, because I came down with ME/CFS in June 2011, I am no longer able to do any cardiovascular exercise, whereas, at the time of my first lipid panel, I was doing 1 hour cardio workouts 1-3 times per week.  So traditional thinking would expect my lipid panel results to be much worse now, yet here are the results:

                                               Before Paleo         After Paleo       Reference Range
Total cholesterol                         182                        159                125-200 mg/dL
HDL (good) cholesterol               46                          46                 > or = 40 mg/dL
Triglycerides                               205                         86                  <150 mg/dL
LDL (bad) cholesterol                  95                          96                 <130 mg/dL (calc)

So the first thing to notice is that my trigylcerides were very high (out or range) before paleo, and now they are much improved.  Also, total cholesterol has come down from 182 to 159.  On the other hand, both HDL and LDL cholesterol have remained almost exactly the same, despite claims in some pro-paleo literature that those numbers would improve too.  But at least they haven't gone up, as some would have predicted.   

It appears the paleo advocates were correct that at least some of my lipid panel numbers would improve even though I'm consuming much more fat and cholesterol.  This leads me to believe that the paleo advocates probably are right when they state that grains, sugar, and casein (in dairy) make our arteries more "sticky", which causes the fats that we do eat to stick to our arterial walls.  As long as I cut out those pro-inflammatory foods, I can eat a fair amount of fat and get away with it.  

It seems to me that I could probably improve these numbers even more if I either went 100% strict on paleo (although I think I'm pretty close already) or by cutting down on red meat in favor of white meats.  Right now, I eat red meat 2 or 3 times a week.  I could easily cut that down to once per week and perhaps improve my numbers even further while continuing to adhere to the paleo diet that has helped me so much in other ways.  

Friday, April 5, 2013

Article: Are B-Cells to Blame for ME/CFS?

Building on my last post (the article about methotrexate), Discovery Magazine's new May, 2013, issue includes an article highlighting research which suggests that defective B cells may be responsible for ME/CFS.  This theory has been receiving considerable press lately.  It's hard not to get a little excited by the hub-bub, but at the same time, one hopes that all the excitement is because there's really something to this theory and that it's not just another XMRV-like disappointment.  

Monday, April 1, 2013

Article: Methotrexate for ME/CFS

There's a buzz lately about the use of Methotrexate as a treatment for ME/CFS.  This goes hand-in-hand with the recent renewed interest in ME/CFS as a possible autoimmune disease.  For an excellent explanation of this drug and how it may be applied to ME/CFS, see this article from my friend Joey:

For obvious reasons, I'm not anxious to be a pioneer with Methotrexate, but it will be something to watch closely as  more adventurous patients come forward to try it.