Archive | June, 2012

Disabled Contestant Inspires On TV’s MasterChef

27 Jun

______________________________________________________________________________

MasterChef’ – Christine Ha

This is not Lyme disease related but it is auto-immune related and truly inspirational for us disabled folks. I watch a TV show called MasterChef which airs Mondays and Tuesdays this summer on Fox at 9pm Pacific. This year there is a contestant competing who happens to be blind. I won’t go into the details of the show since I am pretty ill right now but basically it’s a cooking show to for amateurs to compete to win a great prize. The show is hosted by Gordon Ramsay and 2 other judges.

When I saw Christine Ha trying to win a spot on the show this year I thought there was no way a blind girl could compete in a cooking competition with all those sharp knives. Boy was I wrong, this girl can cook and she is one of the stronger contestants on the show. It is truly inspiring to see her do so well and impress the judges cooking some savory dishes. She does not let her disability slow her down. Christine is visually impaired due to an autoimmune disorder called nueromyelitis optica (NMO).

If you get a chance to watch the show check her out. She is determined, focused, funny and she is a very sweet girl. She even has a blog and a twitter account if you want to chat with her. It is just so amazing to see someone who does not let their disability get in the way of their dreams. Hats off to her and I hope to see her in the finals soon.

______________________________________________________________________________

New Treatment – June 2012

25 Jun

______________________________________________________________________________

LLMD Visit – June 2012

Took a long, exhausting car ride to my LLMD today. I was put on a new treatment as expected. I am staying away from the heavy dose of the usual antibiotics for now since I have no insurance until September and to take a break from antibiotics. I asked for herbal treatment and that is what I have received.

I will be on only one antibiotic which I have already been on before so it’s no big deal. I seem to do pretty good on herbal treatments and do not herx or have huge die off. So I hope this one works a little better and kills these bugs.

(On a side note; the visit cost me $625.00 out-of-pocket and insurance does not help cover any of these meds or the doctor visit for those unfamiliar with what us Lymies go through with insurance)

 

______________________________________________________________________________

MTHFR!

I also finally got the results of my MTHFR test back and it was not god news as I hoped. I have tested positive for both mutant genes but I do not have a copy of the test to share the specific genes and information just yet. I will share that information when I get a copy of the test.

 

What is MTHFR?

“Methylenetetrahydrofolate reductase (MTHFR) is an enzyme that in humans is encoded by the MTHFR gene.[2] Methylenetetrahydrofolate reductase catalyzes the conversion of 5,10-methylenetetrahydrofolate to 5-methyltetrahydrofolate, a cosubstrate for homocysteine remethylation to methionine. Genetic variation in this gene influences susceptibility to occlusive vascular disease, neural tube defects, colon cancer and acute leukemia, and mutations in this gene are associated with methylenetetrahydrofolate reductase deficiency.”

 

Basically my body is and has not been producing a correct enzyme which can give me risks of getting blood clots, occlusive vascular disease, neural tube defects, colon cancer and acute leukemia. In other words I have to take 2 more pills for life along with my thyroid pill. Each mutation of the gene can be handed down from one parent each or one may mutate on its own. Or so I am told, I’m still new to this.

______________________________________________________________________________

Updated Treatment Plan:

Chiropractor (for herniated discs in my neck causing neuropathy)

A-BartByron White Formulas (20 drops twice per day – for Bartonella)

A-Bab – Byron White Formulas (20 drops twice per day – for Babesia)

Cryptolepis (20-30 drops per day for Babesia)

A-EB/H6 – Byron White Formulas (20 drops twice a day – for chronic Epstein-Barr virus)

Florazin (for possible fungal infection in mouth)

Nystatin (for possible fungal infection in mouth)

Artemisinin (5 days on 5 off – usual dose for parasites)

Mimosa – (from compound pharmacy -1 three times daily for parasites besides worms)

Septra DS (1 twice a day -only antibiotic I am on)

Florapro (1 per day – for my MTHFR mutant genes)

Acetylated Glutathione (1 twice a day – for my MTHFR mutant genes)

______________________________________________________________________________

Supplements:

Milk Thistle

Chanca Piedra

Ribose

Krill Oil

Super B Complex

B12

Vit D3

Calcium

Magnesium

Chromium Picolinate

CoQ10

Butchers Broom

Horsetail Grass

Coconut Oil

Colostrum – LD

Folic Acid

and many more…….

______________________________________________________________________________

Lyme Symptoms – Literally And Figuratively

24 Jun

______________________________________________________________________________

Literally And Figuratively

We Lyme sufferers or warriors (as many like to be called) battle through a lot of symptoms and medical issues. I often hear or see someone who is healthy trying to compare their symptoms to our symptoms. Let me just say “no they are not anywhere near the same”.

When a person with Lyme says something they usually mean literally but when a healthy person says something they mean figuratively. They often mistake the two and think you also mean figuratively.

We live in so much pain that we know a pain scale by heart and can tell you what type of pain we are having. There are times where we feel like we may not live and it is really scary but people don’t seem to get we are serious. I have often thought of writing out a Will because at times I thought I wouldn’t wake up he next day.

If you have given birth or had a jagged kidney stone stuck in your tubes for weeks then you know what pain is. This pain isn’t a paper cut type of ouch, this is a bring you to tears and yelling or grunting type of pain.

I just get tired of someone trying to compare their self to a chronically ill person as if they know what they are going through and think they are just being a baby. I see it all the time on social websites. Below are some examples I have seen.

Here are some examples:

Example 1 –

Person: Hey how are you doing?

Lymie: “not good I felt like I was dying last night it was scary, I almost went to the ER but I don’t have insurance”

Person: “Oh me too I felt like I was literally dying last night my stomach was growing because I was hungry”

(No not the same thing. The Lymie literally thought they were going to die and probably were scared and confused)

Example 2 –

Lymie: “I didn’t sleep at all last night do to insomnia I was literally up all night and I haven’t been to sleep yet”

Person: “Me too I literally couldn’t sleep at all”

(The person meant “I slept only 7 hours versus my normal 8 hours”….the Lymie meant what they said and used literally correctly)

Example 3 –

Lymie/Fibro: “I was in so much pain last night my whole body was in pain on a scale from 1-10 it was a 12, I cried all night”

Person: “I know what you mean I was in pain last night probably a 15 on the scale because I had gas pains”

(Again not even close. The Lymies pain scale meant not even an IV drip of morphine could help this pain. The person meant “I had a little tummy ache”)

______________________________________________________________________________

Lyme And Dental Issues

20 Jun

______________________________________________________________________________

Lyme And Gingivitis?

I have been told from many in the Lyme community that Lyme disease and coinfections can cause gingivitis or what appears to be gingivitis and dental issues. Not sure how accurate this is but I have heard of a few people who lost every tooth due to Lyme. I hope that is not common?

In my case in the past few weeks I have been having cuts around my gums near my teeth. There are 2-3 cuts in total and only on the bottom gums. They just came out of nowhere and it makes it difficult to brush. The cuts do not bleed unless I brush my teeth and accidentally brush over the cut. I do not have the bad breath or swelling like gingivitis so I wonder if one of my herbals are causing this?

I do brush my teeth at least 2-3 times per day, I floss daily and I use a good mouth wash. I have never had any dental issues in the past except for a cavity or two at check-ups as a child. I have always taken acre of my teeth so this is something new for me.

I also have been having really sensitive teeth lately. Anything from lukewarm to hot and anything cold are tough to eat. I have been using sensodyne toothpaste but it says if the problem lasts more than 4 weeks to see a dentist. This has been going on for years and ever since Lyme was at its worst.

I do notice one of my fillings has a hole in it now and I can really feel the hot and cold in that tooth. I need to have that filling replaced and preferably with a non-mercury Lyme-friendly filling.

My problem is that my insurance dropped me since I have SSDI now so I have no insurance until September. I cannot afford to see a dentists or doctor or to pick up my prescriptions that have been sitting at the pharmacy for 2 months. Gotta love Lyme and all of the crap that comes with it.

______________________________________________________________________________

Legs Falling Asleep Daily – Paresthesia

20 Jun

 

______________________________________________________________________________

 

My Legs Fall Asleep Daily – Paresthesia

I notice if I sit on the ground (carpet), sit Indian Style or sit on the toilet each day my legs will fall asleep. This is called Paresthesia which is “a sensation of tingling, burning, pricking, or numbness of a person’s skin with no apparent long-term physical effect. It is more generally known as the feeling of “pins and needles” or of a limb “falling asleep”. The manifestation of paresthesia may be transient or chronic”.

I remember back in early 2000 while working as a broadband installer that my legs would fall asleep any time I had to sit on the ground and work with cabling and wiring. I noticed that the falling asleep got worse the sicker I got with Lyme and co’s and now it has become just part of my day. I know it can be caused by bad circulation but in my case it is caused by sitting.

I asked my LLMD about this and he says most likely my sciatic nerve is being pressed or other major nerves and they are causing this issue. He said it is nothing to worry about. I have had bad sciatic pain issue before Lyme took over my life. I used to limp around at work and from my lower back down through my butt and into my hamstring it would be in pain. I would work through the pain like it was nothing but I did get odd looks from my employees that such a young strong guy was walking funny.

So now each day when I go to the bathroom I have to sit down to go pee because it is hard to stand up and sometimes I get dizzy or pass out. I will sit and when I stand both of my legs are asleep, tingling, stinging, and make you laugh at the strange feeling like a funny bone being hit. It takes maybe up to 10 minutes to get full feeling back into my legs.

I get the paresthesia while sitting in the computer chair for too long, sitting on the ground when I play with my friends son, the toilet, sitting on the edge of my bed and in a car seat. It gets really annoying to have my legs numb and it makes it even harder to try and walk.

I do take supplements for better circulation and when I can I ride an exercise bicycle. I just wonder if Lyme and other tick-borne disease have caused this to get worse? It is just one of those other symptoms besides Lyme I have to live with.

I have herniated discs in my neck that causes this same feeling of paresthesia in both arms and my shoulders but the feeling never goes away. It is from neuropathy/radiculopathy or pinched nerves. I also get this feeling in my wrists from Carpal Tunnel. I miss having non-tingling skin. 🙂

 

______________________________________________________________________________

Some More Kombucha Flavors

18 Jun

Kombucha

I have talked about Kombucha before but here are some flavors my mom found for me today. One is Hibiscus (No 3) and the other is Lavender (No 7) flavored. These drinks have enzymes and probiotics in them. I drink these in place of the Coke or Dr Pepper I once drank.

I do prefer the GT’s brand but there are many brands. If you want to know more about them visit GT’s web site HERE. If you have never tried one I say buy just one to see if you like it before you buy a bunch of them. They have the taste of tea, vinegar and the flavoring. It is an acquired taste.

Flavors from GT’s Brand
All Ages

Enlightened Organic Raw Kombucha

Original
Citrus
Gingerade
Multi-Green
Botanical No 3
Botanical No 7
Botanical No 9

Enlightened Synergy Organic & Raw

Trilogy
Mystic Mango
Cosmic Cranberry
Guava Goddess
Gingerberry
Passionberry Bliss
Strawberry Serenity
Cherry Chia
Grape Chia
Raspberry Chia

21 & Up (Due to traces of alcohol that may be found in the drinks)

Organic Raw Kombucha

Trilogy
Cosmic Cranberry
Gingerberry
Divine Grape
Superfruits
Strawberry Serenity
Maqui Berry Mint

Synergy Organic & Raw

Trilogy
Cosmic Cranberry
Gingerberry
Divine Grape
Superfruits
Strawberry Serenity
Maqui Berry Mint

______________________________________________________________________________

Vitamin Water XXX

I know these drinks are not good for you and have sugar in them but when I have my cheating days I like one of these. It is a Vitamin Water XXX which has Acai, Blueberry and Pomegranate in it. I like these for the vitamins, antioxidants and electrolytes they have in them. The electrolytes are great for those night sweats and sweating from Babesia and to help when you have diarrhea.

If you are going to cheat try one of these instead of a soda.I really like these taste of this one over all of the other flavors to choose from.

______________________________________________________________________________

Handicap Parking – Disabled Person Parking Placard

18 Jun

Disabled Person Parking Placard

I finally received my Disabled Person Parking Placard a month ago in the mail. This placard is supposed to be good for up to 6 months. My doctor wrote out my application for 6 months but when I received the placard it is expiring the first week of August. That gives me nearly 3 months.

So I have no idea why they didn’t give me the full period of time. I paid $6 for 6 months so I think they ripped me off (lol). For some reason my LLMD said he can only fill out the temporary placards with the DMV even though he knows I will not be feeling any better within the time it expires. Makes no sense to me.

Handicap Parking Gripe

I have always had bad knees and even had surgery one time on my knee and wished I had disabled parking back then. I thought about how when you have the card and if I go somewhere my driver doesn’t have to circle the block for 15 minutes looking for a closer spot. I also like that you have meter perks so you don’t get tickets (or so they say). “Front row parking” I thought.

We ll now that I have the placard I have tried to use it a few times when picking up prescriptions or to the doctors. Wouldn’t you know it there are never any disabled parking spots available when I go out so I end up at the far end of the parking lot.

I always see somebody who is not handicap in the spots and they do not have a card. I have even seen the police park in these spots when picking up a to-go order. One evening I went with a friend to pick up a to-go order and I told her “we will get front row parking this will be awesome”. We pulled up to the restaurant and there were 4 handicap spots all full of cars.

Only one car had the placard and the other three were there for to-go orders. They were just some healthy young lazy people taking up a spot people really need because they think they need it more. I know cities are trying to crack down on illegal handicap parking but it sure doesn’t seem like it.

So far I haven’t used the card once and don’t see the point of it if just anyone can park in the handicap spots. I have never even thought about parking in a handicap parking spot, not even when I was handicap but just missing the placard. What is wrong with people always trying to get shortcuts and cutting just to save them a few seconds.

These are probably the same people who do not bother to hold a convenience store door open for you and it slams in your face or do not bother to look at you or say “thank you” when you (the disabled person) holds a door open for them (the asshole). I mention this because this happens every time I go out.

I will go to open the door for my doctor’s office and see someone coming behind me so I hold it open for them and nod and they walk right on by as if you do not exist and the door held itself open. Then they go right ahead and cut you off in line even though you were obviously there before them. They could care less that you are limping, sweating and look like you may pass out from your illness.

______________________________________________________________________________