Struggling with Lyme disease

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

Red freckle or mole like things

March15

Recently people have been chatting about finding small spots on their skin that look like little red freckles or moles.  I have them, too, so I thought I’d show a picture of what they look like.  I kept my fingers in the picture so you could tell how big these are.  I have a few that are more like mole size (a bit bigger than a freckle and raised up).

I’ve had a doctor say they aren’t anything to consider being problematic.  I’ve heard others say this is a Babesia thing and yet others who have said it’s a Bartonella thing.  Gah!  I hate all of the guessing we all have to do.

Walking or flash mob for Lyme? Yeah, good luck with that.

March11

Who in the world thinks “walk for Lyme” or “Flash Mob” is a good idea for a Lyme fundraiser?? Unless we have someone pushing us in wheelchairs, that’s not gonna happen.

The anxiety keeps us out of groups and from being around other people.  Most of us lost a lot of our friendships as well over the years, so our support groups are very small.

And the flash mob?  There would be no flash… it would be more like this:

- “I just got here, let me rest”
- “Okay, I’m working off my jacket to show my Lyme t-shirt”
- “hang on, almost there”
- “okay, done”
- “no, wait for me, I’m not quite ready yet!”

Just send me a link and I’ll donate.  lol

I don’t mean to say it wouldn’t work, but I don’t see it as something a person who actually has Lyme/TBI would be able to participate in very well.  Although, I don’t have any alternatives to suggest.  So, a small event is better than nothing  :-)

Gathering people with Lyme disease together is impossible… lol

March11

The face-to-face gather of my local Lyme Disease support group that I belong to has kind of fizzled out a bit and here’s why:

- The location (local library) keeps moving our day/time around.  Most of us are too addled to call every month to find out when it is.

- It would make sense to have one person call every week and notify the group.  Unfortunately, our symptoms flare up completely randomly and that person may completely go out of communication at any time.

- We’re too addled to come up with an alternative location that would be best for everyone in the group.

- We’re too full of anxiety over little things like whether there’s parking space? Will I have to parallel park?  Is it a scary neighborhood?  Things like that.

- We’re too fatigued so… how big is the parking lot because we can’t walk for long.

Our email message group is going well, though.  It’s too bad we can’t figure this out.  :-P

Dr. Edward Breitschwerdt discusses recent Bartonella research

March11

Bartonella is a kind of bacteria that can be transmitted via various entities.  In this radio interview, Dr. Edward Breitschwerdt reveals that Bartonella can be transmitted via ticks, head lice, fleas, and biting flies.  You might want to skip past the first couple of minutes because it’s just the radio host reading off credits and such.

http://radioinvivo.org/2013/03/06/bartonella-the-hidden-epidemic/

He also talks about how the segregation of veterinary medicine from traditional medicine has been counter productive especially when it comes to diseases like these where shared knowledge would be helpful.

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?

Hair loss continues… good thing I had a lot of hair to begin with

January8

Well, the hair loss continues.  Sigh.  Starting last September, before I resumed treatment for Lyme, I started losing a large clump of hair with every shower.  Here’s how much:

And this is just what I lose while I’m finger-combing the conditioner through my hair.  It doesn’t include what I lose during the shampoo or throughout the day.  Yikes!  Good thing I had a lot of hair to begin with or else I would definitely be bald by now.  It’s very thin in places, but not “need a hat” stage yet.

I personally think this is related to Babesia, another tick borne disease that I just started treating for.  I actually get chills in my scalp.  Weird!

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.

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