Struggling with Lyme disease

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

Category Archives: Daily Journal Entries

A general update… still a trial and error

April6

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)

July1

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

May16

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

May16

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.

Psychosocial Issues of Lyme Disease

February25

This article can be found over at Melissa Kaplan’s website:
http://www.anapsid.org/lyme/psychosocial.html
This is exactly what it feels like to have Lyme and/or other tick borne illnesses.


Psychosocial Issues of Lyme Disease

by Kathy Cavert

As with all serious and debilitating diseases, there are some factors that come into play more than the disease itself which complicates things for the patient and the family. These issues are sometimes more devastating than the disease itself.

One of the biggest problems with Lyme disease is that it can render the victim completely helpless and unable to work or take care of the family. The disease can mimic other diseases in combination such as Lou Gehrig’s disease, rheumatoid arthritis, multiple sclerosis, polymyalgia rheumatica, fibromyalgia syndrome, psoriatic arthritis, Alzheimer’s and lupus. It is painful and causes debilitating fatigue and weakness to the point of paralysis at times. It can cause seizures and Bell’s palsy, meningitis and encephalitis. It can cause bone pain and joint pain so severe that it can be frightening.

As with all severe disabling diseases, this one carries with it a whole host of problems other than the disease itself. The following are but a few:

Guilt. Feeling bad about feeling bad particularly when one is unable to work or keep up their share of the housework and child-rearing. This carries over into marital relationships as well because although the Lyme person looks well on the outside, often they feel as though they are dying on the inside. It is hard when loved ones and friends want to go someplace and have a good time and the Lyme patient wants to stay home due to fatigue or pain. They oftentimes feel guilty for being such a dull partner.

The symptoms can also lead to guilt surrounding the lack of sexual interest because the disease is a neurologic disease and can cause some sexual problems as well.

Isolation/Desertion. Often the Lyme patient has the sympathy of friends, physicians, and family at first. But as the months pass and the years pass and the patient continues to complain of varying symptoms and the blood test scans continue to come back negative, friends and family pull away. They begin to doubt the sanity of the person. The physicians begin blaming the patient and suggesting emotional overlay, hysteria, depression or psychogenic problems. The family follows suit.

This kind of abandonment only makes things worse for the Lyme person. They not only have to deal with chest pain, numbness, tingling, infections, fevers, dizziness, pain, weakness, fatigue and memory loss, etc., but they have to do it with strange looks, nasty comments and mistrust from the people who were at one time close to them.

Validation of the person. It is difficult to feel validated as a person when others are telling you that you are nuts and that your symptoms do not exist or that you are bringing them on yourself. Validation must be done now more from within and one finds themselves in the dilemma of trying to beef up their own self-esteem with positive affirmations. This is a time when we all need to feel support and so often we feel just the opposite.

Employers accuse patients of faking illness; family accuse them of not wanting to work or carry out daily chores; friends accuse them of being hypochondriacs and no longer being the kind of friend that they were in the past. Children worry if it is their parent, and spouses become concerned as well.

Parents begin to doubt the validity and the severity of the symptoms and the Lyme patient sinks into depression, at last fulfilling the prophecy of the doctors who for so long had suggested that to be the case in the first place.

Lyme is like having symptoms of all the major diseases compiled into one. It can leave one in quiet desperation. Lyme disease is an infection and an infection that affects the brain. Adding insult to injury, the brain manifestations such as subtle encephalitis and meningitis can cause patients to be emotionally labile, or perhaps moody.

Most Lyme patients are people whose lives have been filled with activity and outdoor things and for the most part, these are people who lived life to its fullest and suddenly were struck down. The adjustment is not easy.

There is fear of the future and fear of the present. With concomitant brain inflammations and central nervous system problems, it can cause a variety of emotional problems, unlike anything the patient previously knew.

We are hoping that the physicians in the Midwest will stop and take a good look at what is really going on here. We do have a problem and it is a problem that at some point, must be addressed. Unfortunately I am finding more and more people who have suffered with Lyme for over 6 years and it concerns me greatly.

It is my sincere hope that soon each and every physician in Kansas City and the surrounding areas will include Lyme in their differential diagnoses when symptoms are suggestive of a combination of rheumatologic, neurologic or cardiac.

Lyme Disease is not a benign disease. It is a very serious spirochetal disease which must be treated with aggressive antibiotic therapy.

Note:  Lyme activist Kathy Cavert has died since the writing of this article  :-(

Lyme community very supportive

February4

Not sure if you’ve been following this… but a very talented Lyme pediatrician has been under attack by the medical board and has been costing this doctor thousands of dollars to stay in practice.  More here:  http://www.indiegogo.com/JonesAppeal?c=home

He was asking for mailed in donations and they finally go an online donation website set up.  The Lyme community donated and helped avoid the recent crisis he was in.  It amazes me how we can all pull together to help each other out.  A warm fuzzy to start the week on  :-)

Paleo Diet… too much meat?

January16

I’ve been trying to do Paleo when I have the energy, but my LLMD said that it actually proposes too much meat and that I should read the book called “The China Study”.  She also suggested I watch the documentary called “Forks over Knives” which is available on Netflix for those who have access.  To be honest, I didn’t get past the first couple of minutes because it was a bit of a scare tactic about the typical US diet.  I hate that approach.  When I have more patience, I’ll sit and watch it through.  Maybe this weekend.

So, is it too much meat?  Or is it just a different opinion like all of the other diets floating around out there?  Or, maybe it’s specific to each person in that maybe it’s too much meat for one person, but fine for another?

Image of the Lyme bacteria

November8

So cool!  Here is an image of the Lyme bacteria:

Coloured scanning electron micrograph of the spirochaete bacterium Borrelia burgdorferi, the cause of lyme disease in humans. The spiral-shaped bacteria are passed on to humans via tick bites. Magnification: x3650

You can see images of other organisms over at Mail Online:   http://www.dailymail.co.uk/sciencetech/article-2197533/As-pretty-picture-lot-deadly–Killer-diseases-youve-seen-before.html#ixzz2BeIRy1oV

Seeing without light, hearing without sound

October24

Some days I wish this was possible.  My light, sound, touch, and motion sensitivity has gone through the roof.  I can no longer tolerate any music and humming to myself is the worst.  I feel like those aliens on the movie Mars Attacks when they play a certain kind of music is makes their heads explode because of the vibrations.  Yup, that’s me!

I sit at work with my sunglasses on and a baseball cap on my head.  Not the greatest look for me, but I can’t tolerate the overhead lights.  I’ve been told it will get better with treatment.  Fingers crossed that it does because I’m annoying everyone with my constant “shhhh” or turning lights down or off.  My significant other calls me a mushroom because I like the dark so much.

Going to start treatment for Bartonella

August30

I had my visit with the new doctor last Tuesday.  I left at 5:00am in the morning in order to get there in time and I was almost late.  ugh!  On a positive note, I didn’t need to get gas until I got home and I still could have driven another 70 miles.  I love my Prius  :-)

Okay, so, after seeing this doctor, she thinks we should treat for Bartonella which completely went with what I was thinking when I went in there.  I’ve started anti-fungals first (Nystatin, Diflucan) and then I’ll start the first antibiotic next week.  Then I’ll add the second antibiotic a week after that.  My fingers are crossed that treatment will help this time.  I think most doctors treat bartonella last, so I was happy to hear that she looked at my symptoms and examined me and said bartonella first.

I wish I could get my money refunded for all of the past treatments that did nothing.  sigh.  Just think of all the money I would have now!  I was gathering my things into a plastic bin to take with to see this doctor and I had a whole plastic bag full of empty prescription bottles.  Reminded me of that scene in the movie “Under Our Skin” about Lyme disease where it showed one man emptying all of his empty pill bottles into a huge pile.  He said he spent hundreds of thousands of dollars on treatments that didn’t work.

I was more prepared for my appointment than I thought I was going in to the appointment.  If I have any advice for you it would be to keep journals of all of your pains and weirdness every day.  Also make note of what you eat and drink.  Because I had been doing that, I was able to go back to early 2011 and read my reaction to an antibiotic that I was given for bladder infection.  I remembered “not tolerating it” but going back to read it made me realize that I was actually Herxing on it.  (A herx is a die-off reaction when you kill off a bug)  This lead me to look into what that drug would affect and Bartonella showed up on the list.  Yay me for writing it down!

Here’s a link to my post about keeping a journal:  http://nightshadejournal.com/2010/11/tip-start-your-own-food-and-activity-journal/

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