Struggling with Lyme disease

A personal blog about nightshades, grains, dairy, Lyme Disease… oh my!
Also see my listing of Nightshades

Ode to eating pizza for dinner


My limbs start to get tired.
The cold sets in. Eventually so cold that I turn on my electric blanket to high even though it’s 65 degrees outside – my sweater is no longer keeping me warm.
Now getting so weak that my torso can no longer hold me upright.
I tip to my side on the couch.
Can no longer keep my eyes open.
My heart is pounding – I can feel it pounding in my chest and joints.
I fall into an uncontrollable sleep. I couldn’t stay awake if I tried. Glad I’m not driving or anywhere where people would see this happening.
I awake 1.5 hours later.
So hot now that it’s unbearable.
Finally get enough strength to slide the electric blanket off.
Heart is still pounding out of control.
So thirsty. I now have a bit more energy and can sit up and take my sweater off. I reach for my glass of water and gulp down what I can.
Set it down. Limbs too tired to do anything else yet.
I stare at the wall for a bit.
I get enough energy to grab my e-reader to read for a bit. I have enough energy to tap my finger to change the page.
Half an hour later, still too fatigued to do anything other than read and tap my finger. Tap… tap… tap…
Half an hour after that, still too weak to do anything but read. Wondering when I’ll have any energy at all and if I’ll get the strength to get up, walk up the stairs, and fall into bed.

“Ode to eating pizza for dinner”

If you stuck with this this far, you have now experienced what I do when I eat any restaurant food or pre-packaged foods. The fatigue (aka paralysis) can last for days depending on what I broke down and ate previously.

I can now only eat fresh fruit, fresh vegetables, and fresh meats from the local health food store. (Not Whole Foods. I can’t afford that place). Luckily, I have a local co-op that carries almost completely all organic produce. I can tolerate organic olive oil, grey Celtic sea salt, and single organic spices with no additives.

I have many theories as to why pre-packaged foods are killing me but that doesn’t make this easier. I just really didn’t want to cook tonight. And my family was eating pizza. So, I broke down and had some. Still suffering for it, unfortunately. People ask how bad can it be? It’s not like an anaphylactic reaction. Well, be paralyzed for a while and risk losing your job every day.

To all of my chronically ill friends – I hear you. It’s not all in your head. Keep up the fight.

A general update… still a trial and error


I received a comment that I hadn’t written an update in a while and I realized that yes, I hadn’t!  Time totally got away from me.  So, let’s see, what has happened since my last post -wow- almost a year ago now??  oops!

I had stopped seeing the doctor I was seeing because I wasn’t seeing any progress or changes at all.  I then joined a Lyme Study in January 2015 in hopes of finding any answers to the chronic fatigue, fibromyalgia, and neurological issues.  I got the iSpot Lyme test done (which came back negative) and had another Western Blot done (that also came back negative).  I know the tests aren’t very accurate, but it still led me to think there was more going on.

So, this new doctor took some blood and ran some more tests.  He adjusted my thyroid medication and started me on some supplements.  For the first time I got my brain back!  I still have a ton of other symptoms to work through, but this is the first time in 4 to 5 years that something positive has come of all of these doctors.

I’m hopeful that things will continue to progress as we peel all of the layers off of the onion :-)   I just wish it would happen sooner, lol.  Next appointment is in 3 months.

Multiple Systemic Infectious Disease Syndrome (MSIDS)


This may not seem related to nightshades, but I firmly believe that it has caused my problems with them.

Dr. Richard Horowitz has coined the phrase “Multiple Systemic Infectious Disease Syndrome” or MSIDS to describe the epidemic that he is seeing worldwide with tick borne diseases.  He does an excellent job of summarizing the issues and I wanted to post the YouTube video if anyone else is interested in watching it.

In this video he is speaking to the Belgian Senate (in order to give you an idea of who his audience is for this video).

And, of course, I can’t find the map showing the severity of infection across the globe.  I’ll keep looking and see if I can find it.  It’s interesting to see that the map for Lyme and co-infections matches the map for Multiple Sclerosis.  I’m waiting to see what research comes up in the next few years now that the topis is finally getting attention.

Here’s one specifically related to dogs, but if your dog can catch it, so can you.  Also, just because a state is listed as low risk, that doesn’t mean there aren’t infected ticks there.

Lyme Prevalence Map for Dogs

Update on me, started new diet


Well, it’s been a while since I’ve posted.  It always seems like everything is always the same.  But, I do want to mention that I’ve made these changes to my diet:

no grains (no rice, wheat, gluten, oats, corn, etc.)
no dairy
no soy, if I can avoid it.
no pre-packaged foods other than fresh meat.
no restaurant food
not nuts, they give me headaches
and I’m still allergic to red peppers

I do buy coconut oil, so I guess I can’t say “no pre-packaged foods”.  Think more along the line of snack foods and things that come in a box to help with dinner.

This is pretty much a Paleo diet with my allergens taken out.  I haven’t reduced how much I eat, just what I eat.  I slip up every now and then, and pay the price when I do, but so far so good.  Without exercising I’ve lost 20 pounds.  I no longer wheeze at night.  And I’ve had more energy.

My doctor started me on the “no grains” thing and pointed me to the book called “Grain Brain” by Dr. Perlmutter.  I haven’t finished it yet.  But supposedly it’s all about how grains affect your brain.

I’m still working on gathering a basic list of recipes as staples, but I’m getting there!

no grains (no rice, wheat, gluten, oats, corn, etc.)
no dairy
no soy, if I can avoid it.
no pre-packaged foods other than fresh meat.
no restaurant food
not nuts, they give me headaches
and I'm still allergic to red peppers

Eliminating foods and how to do it without total meltdown


So I was talking in a message group with some people and someone asked if you should just cut all the offending foods out of your diet at once or one at a time. I suggested to pull things out slowly but not in the way people think.

Right now, all of your recipes are things your family likes and has been eating for a while.  Looking ahead to the “final” list of things you ideally want to eliminate, I bet you can hardly find any of those recipes you can eat anymore.

You’ll need to start finding new ones that don’t taste terrible.  It will be a lot of trial and error and you need to make sure you can still feed yourself and family when those failures hit.  If you try to do it all at once, all of that failure will be horribly depressing.  Plus, you’ll be going absolutely crazy because you’ll feel like you’re starving.  I’ve been there, it’s not pretty.  That’s when you grab your husband’s Krispy Kreme donuts and eat the whole lot of them. hahaha

Yes you would feel better cutting it all out cold turkey.  But, if you don’t have good substance to replace it, you may just fail and give up.

So, make your “final” list of things that you think you want to avoid.  Then start finding recipes and ways to live that way.

New iSpot Lyme Test


Interesting. A little chatter has been going on in regards to the new iSpot test by Neuroscience for detecting Lyme disease. I don’t know a ton about it, but here are a few tidbits:

- iSpot Lyme test is a “Highly sensitive T Cell-based Lyme ELISpot Assay validated for the diagnosis of Lyme”
- Requires 2 yellow-top tubes of blood
- It has 94% Specificity
- It has 84% Sensitivity
- Turnaround: 5-7 Business days
- Samples run in triplicate.
- It can detect lyme-specific immune response within 7 days. Allow 14 days for the T Cells to develop.
- Approved by FDA in 2011 for tuberculosis
- Uses a Lyme antigen coctail of: DbpA, OspC, VlsE, P100
- Can’t tell if you’re currently infected or if it’s past infection.
- 3 weeks after stopping abx for re-testing to see how many T Cells are there compared to previous test.

YouTube video:

iSpotLyme at Pharmasan Labs:

Neuroscience white paper:

Yolanda Foster talks about her experience with Lyme


Here’s the snippet about this video on YouTube:

Yolanda Foster, one of the “Real Housewives of Beverly Hills,” brought herself to tears during a moving and powerful speech at Lyme Research Alliance’s (LRA) “Time for Lyme” Gala, as she eloquently recounted how Lyme disease led her to “some of the darkest days of my life.”

It’s actually quite good, so go watch it if you get a chance:

Vaccines can cause infections to come out of hiding


The following article over on talks about the Gardasil vaccination and the Bartonella infection:

Actually, any vaccination can cause a Lyme or tick-borne infection to suddenly start to multiply and overwhelm a person’s immune system.  If you’ve had an immunization (tetanus, flu shot, etc.) and you’re just not getting better afterward, don’t discount a hidden infection.  I’ve run into many people who have said they had a vaccination and now all of the typical symptoms for Lyme or Bartonella have suddenly started to become apparent.

Video on YouTube with similar symptoms


I stumbled upon this video on YouTube that was made by a person in an attempt to explain their symptoms to others.  Most of these symptoms are my own.  It’s the first time I’ve seen anyone try to describe the same thing I see sometimes when I close my eyes.  When I close my eyes I sometimes get this ebb and flow of light patches, kind of like a dim lava lamp.  I wonder if that has an official medical name?  Anywho… here’s the video:

Lyme Symptoms by rvage on YouTube

Fact or Myth… Dr. Maloney critiques article


An article was written recently that supposedly contained “9 myths about lyme disease”.  That article can be found here:

Dr. Maloney critiques the article on Facebook, but I’ll include it here so that I can look back on it before it rolls off of the Facebook timeline:


As a physician who writes accredited evidence-based educational courses and publishes on Lyme, I noted several factual mistakes in this well-meaning article.

1. The 30,000 reported cases are those meeting a rigid surveillance case definition (SDC) developed by public health officials to track disease. Their narrow definition allows them to avoid tracking someone who doesn’t have Lyme. The SCD does not include well-known neurological manifestations of Lyme disease such as encephalopathy. It requires that patients have positive results on antibody testing, with criteria for a “positive test” also being narrowly defined. Although counter-intuitive, reportable cases are not usually reported; somewhere between 2/3 and 11/12 go unreported.

Clinicians care for the sick and therefore use broader disease definitions. They recognize the consequences of missing Lyme disease. While cognizant of the need to avoid “seeing Lyme everywhere” , they know if a diagnostic error is to be made, better to over-diagnose than under-diagnose. Dr. Mead’s 2004 testimony to state officials in CT made that very point. Some clinicians understand that in patients with an exposure history to black-legged ticks, symptoms and findings compatible with Lyme disease and no other likely explanations for their clinical manifestations, it is entirely appropriate to make a clinical diagnosis of Lyme disease and move forward, whether or not testing confirms the infection. Should the diagnosis be incorrect, this will become apparent during follow-up, when the expected antibiotic effect is missing.

2. In areas where Lyme is highly endemic, the infection rate in local tick populations is much higher than Dr. Mead’s suggestion of 1 out of 4 or 5. In popular vacation areas of MN, 2/3 ticks are infected.

3. Although not part of the article, it should be noted that these ticks carry other agents of disease, including Anaplasma, Babesia, Ehrlichia muris-like agents, Borrelia miyamotoi (related to the Lyme bacteria Borrelia burgdorferi) , viruses and probably species of Bartonella bacteria. A single bite can transmit multiple infectious agents and having co-infections complicates diagnosis and treatment.

4. According to 15 years of CDC surveillance data, roughly 70% of case reports noted the presence of an EM rash. A recent study found the likelihood of developing a rash depended on which species and strain of the bacteria caused the infection.
The classic “bull&# 39;s-eye” rash is seen in < 20% of all rashes. Thus, patients with early disease are more likely to have no rash than to have a bull’s-eye.

5. The list of neurologic problems secondary to Lyme is much more extensive than Dr. Mead suggests and is well-documented in the literature.

6. The comments regarding persist disease – lingering or progressive symptoms and findings – seem to minimize the possibility of persistent infection. This is a mistake as persistent infection in humans is well-documented in the literature and several animal studies, using a wide variety of animal species, demonstrated persistent infection is not a fluke occurrence. Interested readers should check out studies by Embers, Barthold and Hodzic.
One of the few studies of late neurologic disease (Logigian E) noted that peripheral nervous system findings in his subjects occurred an average of 16 months post-rash and central nervous system changes were seen 26 months post-rash. These findings were typically accompanied by systemic symptoms like fatigue, sleep disorders, cognitive problems.
Given that direct evidence of the bacteria’ s presence is rarely demonstrated prior to treatment, it is unrealistic to require such proof post-therapy in order to conclude that persistent disease is due to persistent infection. As an epidemiologist and not a clinician, Dr. Mead may not realize that his broken bone analogy is flawed. In some fractures, failure to heal (known as non-union), is quite common.
Which isn’t to say that there aren’t other potential mechanisms but certainly none have been as well demonstrated as persistent infection.

7. Dr. Mead’s comments about treating persistent symptoms represent the conventional medical wisdom but he should know better. Last fall two separate papers, including one by Allison Delong that I co-authored, carefully reviewed the 4 NIH-sponsored trials and demonstrated that in 2 trials, IV antibiotic re-treatment resulted in clinically meaningful improvements in patients with severe fatigue. Unfortunately, the risk of adverse events was significant. But patients with disabling fatigue like that seen in these 2 studies, may determine that the potential benefits justified the risk. Hopefully new research will identify other patient subgroups that would also benefit from antibiotic re-treatment as well as antibiotic protocols that are equally, or more, effective and less likely to cause problems. That won’t happen if members of the CDC’s Lyme program have already given up on this line of therapy.

8. Testing is not reliable and definitely cannot rule out disease. Common blood tests look for antibodies that can take weeks for the body to produce, which is why testing during the rash phase is discouraged.

Once produced, levels do not necessarily remain high in people who are infected. The bacteria are a zoonotic pathogen, able to survive in multiple animal species – ticks, lizards, mammals and birds. To do this it must be able to adapt to these different hosts, including the host’s immune response. Thus, it has developed ways to evade the immune system and after a time antibody production decreases because the body isn’t “seeing” the bacteria. In a 1999 study by Logigian, where subjects absolutely had to have evidence of Lyme to be included, 17% lacked positive serology. In Embers 2012 monkey trial, antibody levels as measured by the C6 ELISA, declined after treatment even though the animals had evidence of persistent infection on autopsy. Even more interesting is the fact that 50%of the untreated animals also had their antibody levels drop back to normal as time went by. This has real implications for patients with late neurologic disease because they often experience diagnostic delays of several years and with the passage of time they are even less like to be diagnosed if it requires a positive blood test.

9. There is one well documented route of human to human transmission – in utero.


A lot of discussion is going on right now between doctors and researchers.  It will be interesting to see how it all pans out in the end!

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