Food aversion, Babesiosis, and Mepron - Ann Marie's Berry Smoothie

I was going through a period of food aversion recently; this is not unusual for people with Lyme disease and its various co-infections.  Unfortunately, I happened to be taking several medications which must be taken with food!

One of these was Mepron, an anti-malarial which also works on Babesia, another charming tick-borne disease I have.  Every teaspoon of Mepron needs to taken with approximately 20 grams of fat!  How could I do that when I could barely eat anything??

Fortunately, a friend of mine who also has Lyme gave me her recipe for berry smoothies.  She adds almond flour to the smoothie to provide fiber, extra protein and nutrition, and which, combined with the Greek yogurt, just happens to add up to a total of 20 grams of fat!

I thought I should share this in case it might be helpful to someone else on Mepron (particularly someone who has no appetite!).

Ingredients:

1/4 C Greek-style yogurt, plain (I use Trader Joe's)
1/4 C almond flour or almond meal (make sure it's certified gluten free!)
frozen/fresh fruit (blueberries, strawberries - nothing too sweet)
a dash of aloe juice to soothe the stomach
a dash of water with lime

Directions:

Whip everything up in your blender or magic bullet, and voila!

According to the nutrition info, there should be exactly 20 grams of fat in this, and I can assure you that it does not seem fatty when it's going down. Yay for almond meal!

I have to stay on a fairly low carb diet now (just found out that I'm pre-diabetic, oh joy!). The nice thing about this smoothie is that the carb content is not bad (< 10 grams?) and if it needs to be sweeter I can add a trace of stevia without adding to the carbs.

Eating right to get well....and save the planet

I'm going to get up on my soapbox here....this topic came up recently on one of the Lyme forums I belong to and I think it's REALLY important to get this one right!

For a long time I was very confused by all of the conflicting information out there: high-protein/low-carb versus low-fat/high-carb, vegetarians and vegans, sustainability, organic farming, and trying to do the right things for the environment.  And what about those messages that have been drilled into us for decades, like the USDA guidelines and the food pyramid, for goodness sake???

Who to believe?

I have only recently figured things out (at least as far as I'm concerned).  For me, it was a three-step process.  I thought it might help if I explained the process by which I arrived at my current state of certainty about which diet is the best. Please note that the following is the truth only in my humble opinion....and I already know that I do not know everything!!

The first thing that helped me is that, in the past, I followed the Atkins diet for a very long time (years) and I KNOW that I felt better on that diet than I have ever felt, before or since. So I had that personal experience to go by.

In addition I was diagnosed with celiac disease in 2008, which means I cannot eat anything containing gluten. See my Gluten Free Living and Gluten Free Recipe blogs for more info.  Of course, the fact that I felt good on the Atkins diet makes sense, because it's very low gluten, if not gluten free (depending on how strict one is).

By the way, it seems that being "gluten free" has become sort of a new fad diet in this country, mostly because of Elisabeth Hasselbeck and her book, I suppose.  And many people follow it rather casually, "cheating" now and then by eating gluten-y snacks.....but anyone with celiac disease or gluten intolerance CANNOT cheat, unless they want to be very, very sick.

For any of you reading this who are actually gluten-intolerant or have celiac disease, I must point out that you CANNOT eat rye, barley, wheat (including spelt, kamut, bulgur, cous cous, etc) or ANY grain that is in any way related to these. You cannot eat (most) oats either, because of contamination issues - farmers typically grow wheat one year, oats the next, on the same fields and they are processed with the same equipment.

There are certified gluten free oats grown by conscientious farmers who understand the cross-contamination issue, but a few rare celiacs (like me for instance) cannot even eat certified gluten free oats, because we react to the protein called avenin (molecular structure similar to gluten) which is in oats.

For those of you who are just eating gluten free because you've heard it's healthier, you can do whatever you want...be gluten free during the week and eat gluten on the weekends without (obvious) consequences.

I don't have that luxury.

And for those of us with Lyme disease, it turns out that being gluten free and low carb helps!  Gluten causes inflammation, which should definitely be avoided, and carbohydrates/sugars feed the spirochetes, so it's important to eat low carb if you have Lyme.

So my experience with the Atkins diet plus being diagnosed with celiac disease was step #1.

Then I started reading, both online and in books, about the theory that we should eat the way our ancestors ate. This makes sense to me, as a scientist....we should eat the way that man "in the wild" eats. So how did our ancestors eat? How do hunter-gatherers today eat!? Well, they weren't (and aren't) vegetarians, that's for sure! Or they would have died in one of the Ice Ages....very few plants grew in Europe during those times!

The so-called Paleo Diet seems to be the right one; it makes total sense to me. And the proponents of this diet have proven to me that they've actually done their homework. For instance, they compare the gastrointestinal system of a carnivore (wolf or dog) to that of man, and to that of a herbivore (cow). Guess what? We are designed to be carnivores. But we CAN eat some plant foods without harm, just as dogs or cats can. It's just that MEAT (or eggs, nuts, fish) should make up a large portion of our diet (sorry for offending the vegetarians and the vegans, but there it is).

Please understand that farming (agriculture) is a VERY recent development; humans have only had agriculture for about 10,000 years. Our bodies did NOT develop eating the foods that we eat today.

It turns out that the food pyramid is simply a very successful marketing ploy created by people trying to sell grain.

Of course, this is the explanation for celiac disease and gluten intolerance....the human body is not built to process grains of ANY type. Nor are ruminants like cows....the modern practice of feeding corn to cattle actually makes them ill. But it gets them to market weight in half the time, so who cares, right? :(

I personally believe that the modern human diet with its emphasis on grains is at the root of the obesity epidemic. If grain gets cows to fatten up twice as fast, what do you think it has done to us??

And once again, avoiding grains is important for those with Lyme, since grains are high carb!

Figuring out that humans really ARE carnivores and that ALL grains are bad for us was step #2.

Then recently I bought the book, The Vegetarian Myth, and I was simply blown away when I read it. The author (a former vegan) explains in great detail how monocrop agriculture (the huge fields of wheat, soy, corn, etc) is destroying our planet, because it is depleting the topsoil at an incredible rate, much faster than nature can replace it.

Now you must understand....one of my graduate degrees is in Soil Science, so this is a subject that I UNDERSTAND. And this woman is RIGHT. Many soils take hundreds or even thousands of years to develop, and the monocrops are destroying our topsoil at an incredible rate. And when it's gone, we will STARVE. Unless we change the way we eat.

Cows are supposed to eat grass, and WE are supposed to eat the foods that the hunter-gatherers (our ancestors) did: meat, fish, nuts, eggs, greens, root veggies, berries, etc. Nothing else... and definitely nothing processed!!  Farming in a small, local way is not a bad thing; growing vegetables and fruit, as long as we do it in our own small plots in a sustainable way, and raising free-range poultry and grass-fed cattle who are allowed to graze freely as God intended will NOT harm the environment.

But whatever you do, DON'T eat soy!! 91% of the soy grown in this country is genetically modified, and it is TOXIC. Read what happened to hamsters in just 3 generations after they ate GM soy:

www.huffingtonpost.com/jeffrey-smith/genetically-modified-soy_b_544575.html

So not only should we eat Paleo, but we need to stop purchasing food that has been trucked for thousands of miles and only eat what grows locally, and completely STOP eating grains and soy!

Reading that book was step #3.

NOTE: for anyone who may read The Vegetarian Myth, you have to have a healthy level of skepticism and skip over some of the weirder portions, because the author goes off on political tangents (for example, she's very anti-male-dominance and her anti-male rants distract from her truly important messages about saving the planet).  In other words, be as smart as a donkey and just "eat the hay and leave the sticks", as one friend of mine (a good ole boy from Oklahoma) used to say.

So, now I am convinced. I have gone Paleo and totally grain free (fortunately I created a few recipes for grain free biscuits and bread, etc., made with coconut and almond flours). I've started losing weight, even on PREDNISONE! And I need to lose weight.

NOTE: Those of you who need to gain weight should not lose weight on the Paleo diet. You will likely gain until you reach a healthy weight.

I do hope this post has been helpful to someone, and has not increased the confusion level out there. I just felt I should explain how I decided on the "right" way to eat.  Of course, for both weight loss and in an effort to avoid feeding the Lyme bacteria, I try to eat low carb, and so limit my intake of fruit and sweeteners such as agave and coconut nectars.

Warning, warning.....

.....danger, Will Robinson!

(For those who are too young to have watched television in the 1960s, this is a reference to a VERY old TV show called Lost In Space. The robot, pictured above, used to say this quite frequently.)

I'm sharing the story of my chronic illnesses, how they developed, how long it took to diagnose them, etc., as a warning because it just may help someone who is in diagnostic limbo.  My story is sort of a mystery novel...tracking down the culprit, step by step (with the occasional blunder off the track), until finally you have him cornered!

(NOTE: I posted this story on one of my other blogs some time ago, but it really belongs here.  This post has been updated with new information as well.)

Background: my family has a strong genetic predisposition to autoimmune diseases; two of my dad's sisters died from complications of lupus, my dad had RA, one daughter has Hashimoto's thyroiditis while another has lupus. Three out of 5 of my grandchildren have celiac disease.  Many of my cousins, nieces, nephews suffer from AI diseases as well.

I've probably had celiac disease since infancy, plus psoriasis and Hashimoto's thyroiditis since I was in my teens. I wasn't diagnosed with Hashi's until my thyroid was basically dead though, in my early thirties, and wasn't diagnosed with celiac until much later in life...more on that further down.

One morning in March 2004, while standing in front of a mirror in the lady's room at work, I noticed that the whites of my eyes were yellow!  I went to the doctor immediately of course, and it turned out to be a very serious case of hepatitis (my liver enzymes, AST/ALT, were above 3500 and normal is less than 40!!), but all virus tests from A to Z were negative. In fact, ALL tests for any known disease that my hepatologist could think of were negative. My doctors were just beginning to mutter under their breaths about a liver transplant...then I discontinued an over-the-counter herbal medication I was taking and things began to improve spontaneously.

Of course I was off work for weeks and weeks and then had to endure months of my skin and eyes being the color of a yellow highlighter (along with the not-so-hilarious comments from my colleagues about my resemblance to Marge Simpson), but I thought it was just an isolated health incident. Eventually I was "well" again....so I thought.

I recently remembered a cold December day in 2005 when I went to the doctor with a round red ring-like rash on my inner right thigh.  I had tried to see my regular PCP, who was female, but she wasn't available so I saw the doctor covering for her, a male doctor that I never particularly liked.

I told him I thought I had ringworm, but couldn't figure out where I'd contracted it since we had no pets (our cat Cassidy had died 6 months earlier).  The doctor stated rather condescendingly that he didn't think it was ringworm, but conceded it might be some sort of "fungus" infection and gave me an ointment for it.  He really didn't appear to have any idea what the rash was, nor did he care.

The ointment didn't seem to do any good, so I discontinued using it after a few days.  Slowly the red ring expanded but it faded as it got bigger so I didn't worry about it anymore.  It was gone after a few weeks. 

My only other new complaint that I had mentioned to the doctor during that visit was knee pain, which sort of came and went.  It seemed to move around to other joints too, but it appeared most often in my knee. The doctor brushed it off as merely part of "getting older" and told me to take ibuprofen for it.

More than a year later, in the summer of 2007, I noticed severe back pain while my family and I were spending the day at an amusement park. I kept having to stop and sit....I had never had problems like that before. We ended up cutting our visit short and going home because of the pain.

I went to see my doctor about it and she x-rayed my back but there was nothing on the x-rays to explain the pain. She laughed and told me that I was the only person over the age of 40 that DIDN'T have arthritis in my back! She did not offer to do MRIs, nor any other tests at all, for that matter. Nor did she refer me to a specialist. I felt as though I was basically dismissed as a hypochondriac.

But the pain just kept getting worse and worse; by the spring of 2008 I could only walk or stand for maybe 10 minutes at a time. This was a problem because, in addition to a full time day job (thankfully sitting at a desk!), I was a college math instructor part-time in the evening, and that required me to stand.

I actually ended up in a wheelchair by September 2008, but persuaded the college administration to give me special tools that would allow me to teach sitting down.

In addition, I was developing MANY other bizarre symptoms that helped to keep me in that wheelchair: maddening muscle spasms in my feet, toes, hands, fingers, and ankles, peripheral neuropathy, vertigo, double vision, gastric problems, bowel and bladder issues, "brain fog",  horrible daily migraines, and lots of PAIN everywhere.  I was also inexplicably gaining weight....I had not changed my diet; in fact, I was eating less than before because I simply wasn't that hungry, as I was more sedentary.  But I continued to gain.

In desperation I began to seek out other doctors: rheumatologists, neurologists, gastroenterologists, etc., etc. Sure enough I was diagnosed with fibromyalgia, rheumatoid arthritis, autoimmune hepatitis, lupus, and celiac disease (all autoimmune diseases). I was put on several different medications, including the dreaded prednisone, which only exacerbated my weight gain.  But the cause of my back pain and my weird neurological symptoms remained unexplained.

I joined several online health groups, including celiac.com, which has a board with a number of forums exclusively for celiac disease or gluten intolerance issues.  I learned a great deal about celiac disease, and about its role in triggering other autoimmune diseases.  I decided at that time that celiac disease had created the right conditions for me to develop all of my other AI diseases.  I felt that I finally understood everything....well, almost, anyway.

But I still didn't know WHY my lower back hurt so bad that I could only stand or walk for a few minutes at a time, and why I had so many neurological symptoms.  And was celiac REALLY to blame for ALL of my other autoimmune diseases?

In the meantime, one of my online friends (Alison) at the celiac forum was absolutely shocked at the number of diagnoses that I had racked up in a mere 2 years.  She told me that I MUST get tested for Lyme disease. I insisted that it was impossible (I'm not the outdoorsy type, I hadn't been camping in years, I hadn't had a pet since my cat died, etc.) but Alison kept pestering me and pestering me until I decided to get tested just to shut her up.....LOL!

Ans of course, I DID test positive for Lyme, and have now been under treatment for 10 months with several different antibiotics. Unfortunately it appears that I have had Lyme for years now.....I believe I was likely bitten by an infected tick shortly before my episode of "cryptogenic" hepatitis in 2004. Lyme disease doesn't usually affect the liver that dramatically, although there is a condition known as "Lyme hepatitis", but some of the coinfections (Babesiosis, Ehrlichiosis, and Bartonella),  can definitely cause liver damage! And I apparently have all three.

And the latest piece of information I found on the Internet has been invaluable: I found a website that discusses Lyme disease in cats, here.  It was the "smoking gun".  It saddens me to think that my sweet Cassidy may have suffered from Lyme disease until it was too late to save her (while her vet and I remained clueless), but I think this is the last crucial piece of the puzzle.

I really, honestly believe that I've figured out how and when I contracted Lyme!!  Here is my hypothesis:

Because I got Lyme disease from SOMEWHERE, and because of the circumstances of her death and her symptoms prior to death, I feel fairly certain that Cassidy died of untreated Lyme disease.  Probably she had carried a tick (or even ticks) into our house where a Lyme-infected tick eventually bit me.  This almost certainly occurred in early 2004, just before I became so seriously ill.  I did not notice the tick bite, nor any ring-like rash at that time, but this is fairly common.

Besides Lyme disease, I contracted at least three additional tick-borne diseases, and one of them was probably the cause of the severe case of hepatitis I came down with.  The over-the-counter herbal supplement I was taking simply added to the liver irritation being caused by the infection.

Cassidy passed away from kidney failure in June 2005.  She was quite listless for months preceding her death, and towards the end was refusing to eat or drink anything.  We tried to hydrate her intravenously, but she was just too far gone. 

Wait a minute, you say?  What about the ring-like rash in December 2005?  That's the physical sign of a tick bite, and generally appears within a few weeks of the bite!  So must I have actually been bitten in 2005?!?

Well yes, that rash likely was erythema migrans (aka EM, the Lyme "bullseye" rash), particularly since it was associated with joint pain simultaneously, but the problem is that it could either have indicated the original bite, or merely been a recurrence of EM.  EM can show up more than once after you've been bitten, and can even occur in late-stage Lyme, i.e., after someone has had it for a long time. This just adds to the confusion when you're trying to construct a timeline and figure out when you were first infected with Lyme disease!

But I should allow for the possibility that this WAS the original bite.  So I will say that I either acquired Lyme + co-infections in early 2004, or late in 2005.  Unfortunately my hepatologist did NOT think of testing me in 2004 for Lyme or any of the associated coinfections; doctors rarely think of doing testing for Lyme, actually.  If I got it in November or December 2005, then Cassidy, rest her soul, had nothing to do with it. 

In any case, I felt fairly healthy for some time after I recovered from the 2004 episode of hepatitis, but the Lyme spirochetes were apparently busily chewing on my spinal disks from 2004 (or 2005) until 2007....the bacteria LOVE collagen, so they frequently show up in the disks and accelerate degenerative disk disease to the point of causing radiculopathy even in very young adults.

Spinal MRIs FINALLY uncovered the secret of my back pain....bulging disks pressing on spinal nerves. And my other issues such as vertigo, double vision, etc., can also be attributed to either Lyme or Bartonella.

In addition to all of this damage, Lyme disease almost certainly helped to trigger the astounding number of new autoimmune diseases and related syndromes I developed, including my autoimmune hepatitis, rheumatoid arthritis, lupus, and fibromyalgia. Lyme is notorious for triggering and/or mimicking autoimmune diseases and fibro.

I still blame celiac disease for contributing to the problem, especially for the Hashimoto's thyroiditis and psoriasis which I developed in adolescence.

How I wish I had known much, much earlier that I should NEVER eat gluten!!

Medical mysteries solved! :(

So please, any of you out there in diagnostic limbo....particularly those who have suddenly had an EXPLOSION of autoimmune diseases like mine, please get tested for Lyme disease! Most doctors do not think of Lyme as a big problem (it IS) because they have told it's rare (it ISN'T).

Please visit the Lyme forum at HealingWell.com plus the following helpful link for more info:

www.anapsid.org/lyme/index.html

Melissa Kaplan, the creator of that website, has LOTS of extremely good links on that page to other informative sites.

If you read this far, I'm impressed!

New beginnings....

Welcome!

This is my first post on my new Lyme disease blog.  It will be a short one, just to kick off the site so to speak.

I have several other blogs that I maintain (rather haphazardly since I've been so ill), and if you wish to visit them out of curiosity, the best way is to go to my "home page", here.  As you will see, I blog about my autoimmune diseases (including celiac disease), gluten free living and my favorite gluten free recipes.  I also blog about my adopted daughter (biological granddaughter) Emma and her inspiring story of (day by day) overcoming the limitations imposed by her very rare medical conditions.  And last but not least, I occasionally blog about being both a scientist (an astronomer) and a Christian.

But the focus of this blog will be LYME DISEASE.  And the so-called "co-infections"...when I was diagnosed I tested positive for Babesia and Ehrlichiosis (HME).  I've since received a clinical diagnosis of Bartonella as well.  My titers for EBV and CMV have been extremely high at times.

Here I plan to discuss Lyme disease and what it has done to me.  What it has stolen from me (hopefully temporarily). And my treatments and progress back towards health (or lack thereof).  Hopefully some of you will find this information to be helpful.

BTW, the name of this blog is not completely original....I'm aware of a very humorous Lyme blog called With a Twist of Lyme by Dr. Wiseass (?!?), and another one called called simply Twist of Lyme, by Jamie....and there may be others out there with similar names.

Sadly, the first blog I mentioned has not been updated since 2007, and the second seems to have stopped sometime in 2005.  I hope that this means that both blog authors have regained their health!  And I also hope that they will forgive me for borrowing the "Twist of Lyme" idea from them for my blog.

To those of you who have Lyme or even suspect you MAY have Lyme, may God grant you peace and healing.

More soon....