Archive | May, 2012

A List Of My Supplements And Herbals

31 May

(Just some of my daily supplements/meds)

My Supplements and Herbals (* must have)

*Vitamin D3

*Vitamin B Complex

Natural Vitamin E

Vitamin A, C, E & Selenium

Amazon Spiro

Calcium

Magnesium

Devil’s Claw

Fibro Essentials

Kelp

*Chanca Piedra

*CoQ10

Sleep Essentials

Echinacea

*Omega 3 (Krill Oil)

Acai Berry

Niacinamide

Adrenal Essence

Rhodiola Rosea Extract

Goji Berry

*Milk Thistle

Saw Palmetto

Resveratrol

5-HTP

Grapeseed/Green Tea/Pine Bark

L-Arginine

Aretmisinin

D-Limonene

Cat’s Claw

Oregano Oil

Pau D’arco

Chlorella

Tumeric/Ginger

Tart Cherry Extract

Butcher’s Broom

Chromium Picolinate

Chloline & Inositol

Holy Basil Leaf

Olive Leaf

Ribose

Gluthathione Precursor Complex

Sarsaparilla Root

Horsetail Grass

Coconut Oil Soft Gels

Seriphos

Colostrum-LD

Potassium Citrate

Samento

Nutramedix Banderol

Pinella

Lyme Specific Formula

Cryptolepis

A-EB/H6

Vitamin B12

Vitamin C

Chia Seed

 

I’m sure there is more I am forgetting…… I am not taking all of these daily these are just all of the ones I have tried. At one point I was up to 45 pills per day.

 

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Lyme Disease, Coinfections And Depression

30 May

“You Are Just Depressed Not Sick…”

I just finished taking an online survey for a study on Fibromyalgia patients. I was invited privately through email to participate in this study to help Fibro patients with health care. After completing the survey I feel like they were basically saying Fibro patients are angry, depressed and have anxiety attacks.

There were questions that said “rate between always or never to the following questions”. The same questions just kept repeating but not in the same order over and over. Examples; “do you feel worthless”, “do you get angry”, “do you hold a grudge for hours”, “do you have anxiety even while relaxing”. There were maybe two questions relating to pain and Fibro fog.

This just made me feel as if yet again someone was blaming depression on why we feel sick. The survey made me feel as if the company conducting the study thinks that we only have a few symptoms which make us look crazy and depressed.

The same can be said with Lyme disease and coinfections. I cannot tell you how many times I have heard someone say “well if you think positive and be happy you will be cured”. I had a discussion on this on Twitter yesterday. Is that a nice way of saying “you are not sick but only depressed”? When will they realize we are depressed because we are sick!

Many of us have had a drastic lifestyle change and a lot of different issues once this disease had disabled us. For me, I lost my job, lost my car, went bankrupt, lost my savings and moved back in with my parents all within a few months. Lyme had taken over my body and I have been bedridden ever since. I am sure there are many of you with the same stories or even worse.

Of course we are going to be depressed when we are basically a prisoner in our own body and trapped in our homes with no human interaction. For me, I lost pretty much all of my family, friends and co-workers who have yet to see if I am still alive. One of them told me to “get off my lazy ass and get a job”. I still have a few friends who have stuck with me and those are true friends.

I cannot drive since everyday the world seems to be spinning (dizzy) and my cognitive issues make my reaction time slow..etc. I haven’t driven a car in nearly 3 years. I haven’t really left my house in years except to see my doctor or go out to eat maybe twice a year. I cannot be in the sun. If I do go out for an hour or two a pay for it in extra severe pain for the next three days.

I am not just speaking for myself but for thousands of others just like me. We would give anything to be healthy and happy. For me I was happy and not depressed at all until I became sick and realized so many things in my life would change for the worse.You just sit every single day by yourself and can’t even enjoy TV anymore. All the fun things and hobbies you once did you can no longer do. Who wouldn’t become depressed?

Doctors who do not understand Lyme are so quick to blame depression for everything or say it is in your head. Strangers and even friends think we are just people who are really down and do not like to have fun so we are lazy and want attention. They couldn’t be more wrong.

I talk with my Lyme friend daily and we crack jokes and we talk about our futures and all of the fun things to look forward to. She is critically ill and has more than just Lyme yet she is always there for others and smiling. That is what us Lymies do, we are fighters and we can smile through all of the pain and bullshit.

Lymies have been through a lot and we fight a battle many people cannot see. We fight with insurance, doctors, politics, diseases and much more. We are some of the toughest people you will ever meet. We are Lyme soldiers currently in battle and we need support not to be made fun of, mocked or abandoned. We have enough problems so please do not add fuel to the fire by saying we are just depressed.

And One Other Thing….

Time and time again I hear of some stupid comment about a cure that “so and so did and cured their Limes disease”.  It is not Limes or Lymes disease and there is no cure! If their was a cure we would know about it before you did. Eating more fruit will not cure Lyme disease people. Yes, somebody seriously told me that one time. So stop giving your uneducated 2 cents and stop trying to sell your snake oil.

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Recommended Book For Lyme Disease

29 May

Continue reading

How To Get Mepron Covered By Insurance And Tips

28 May

 

How To Get Mepron Covered By Insurance & Tips

Mepron

If you suffer from a nasty little parasite that is feeding off of your red blood cells called Babesia then you will most likely be prescribed Mepron. Mepron (Atovaquone) is a semi-thick bright yellow suspension (liquid) that is taken orally. The liquid resembles paint and us Lymies call it by a few nicknames such as “yellow paint”.

Mepron can temporally stain clothing, kitchen sinks, counter tops or just about anything it touches. Be sure to brush your teeth after sipping it down. The average dose myself and others I have spoken to take daily is 1 tsp twice per day. You should usally be taking Zithomax (Azithromycin) with Mepron. Mepron should always be taken with at least 20-30 grams of good fats.

 

Some good FATS you should eat before taking your Mepron:

  • 1 Egg = 5 grams
  • Cashew/Almond Butter – 1 tbs = 10 grams
  • Sesame Butter – 1 tbs = 8 grams
  • 1 Avocado = 30 grams (recommended – I make guacamole with fresh garlic and cilantro)
  • Coconut Oil – 1 tbs = 14 grams
  • Kefir – 1 cup = 8.75 grams
  • Almonds (raw) – 1/4 cup = 11.5 grams (recommended)
  • Cheese – 1 slice = 9 grams
  • 100g of cod liver oil – 99g of fat
  • 100g of cold smoked salmon – 8g of fat
  • 100g of hot smoked halibut – 5-17g of fat
  • 100g of butter – 70-82g of fat

 

*You can also eat chicken or sausage if you prefer but you will need to eat many pieces of chicken or many links of sausage. There are many other choices but these are some of the better ones.

 

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How To Get Merpon Covered Or For Free

 

Step One:

I was denied insurance coverage of Mepron last year while trying to get my prescription filled. I was told the Mepron would cost me about $1,500 out-of-pocket if I needed to buy it. After shopping around many pharmacies I found the cheapest price was $975 which is still way too much for any Lymie.

Here is how I got 2 bottles of Mepron covered. My insurance company denied Mepron not only because of the cost but because there are alternatives such as Malarone. Malarone does not work as good as Mepron.

I called my insurance company and they told me they were willing to cover it only if they knew that is the only brand/med that will work for my illness. So they asked that my doctor (LLMD) call them and verbally tell them that only recommends Mepron and that it is the only medicine that will help me.

This took maybe two months of back and forth on the phone. My doctor would say he already called and my insurance would say they never received the call. So don’t give up. By the third try the insurance case worker and my doctor were on the same page and they agreed to cover only 2 months worth (2 bottles). I have since been denied any new prescriptions for Mepron.

 

Step Two:

*This step may only work if you have little to no health insurance. Most likely they will approve you if you have no insurance.

The makers of Mepron (GlaxoSmithKline) have a program to help patients get Mepron. You can find information about this program either from your LLMD, Online or call them on the phone. The program is called Bridges To Access.

I filled out an application and mailed it in. A really nice lady called me back weeks later and told me I was denied.The reason I was denied was because I have insurance. She told me if my insurance was a certain kind it may qualify me but I had the kind that was not qualified. They are really helpful and nice and willing to work with you so don’t be afraid to call them

Click this link HERE and find out if you qualify for the program. I hear those who do qualify get at least 2-3 bottles for free. Good luck.

 

Step Three:

Ask around to other Lymies. Many of us have a whole pharmacy at home and expiring meds. There are social networks such as Facebook or Twitter to ask around. Usually people are willing to send you the bottle for free and they may even pay for shipping if you are in debt. If you know where to look there are groups for med exchanges. Yahoo Lyme groups are also good to ask around on.

I hope these tips will help you get your Mepron. I had so much trouble getting mine covered and I know many of you do too. If you have any tips leave a comment and I will add them into this posting with your name. Thank you.

 

PLEASE READ –> check my comments below for generous people who are willing to ship you their Mepron.

 

(Update)

I was able to get two more bottles for free in November, 2012 from a fellow Lymie via a group and I just paid shipping. Very nice person and helped save me $100’s-$1000’s!

 

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Interesting Mepron Info

I found this link interesting. Look at some of the studies and side effects on this PDF file for Mepron:

http://us.gsk.com/products/assets/us_mepron.pdf

 

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Happy Memorial Day!

28 May

 

Happy Memorial Day

 

I thank all of the people who have served, are serving or have lost a life for our freedom. I appreciate all that you do and I hope that all of the troops will make it home safely.

For those who are healthy this is a day you should night try to drink and drive. Families will be traveling on those same roads so please be responsible.

For those who are too ill to enjoy this holiday (like myself) I hope you have a pain-free day. I hope you find a reason to smile and try to enjoy your day at home.

 

 

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My Health Insurance Rant – I Can’t Get My Meds!

26 May

My Health Insurance

(Update) As of today I am still lapsed with no insurance and my meds are at the pharmacy waiting on me. It has been nearly 2 months already and numerous calls have been made to my lazy case worker. My mom called today and talked to a supervisor. The supervisor was about as helpful as the case worker. She said that my case worker will get to my application when she gets to it.

In other words she said “we are lazy asses and we don’t care that you cannot get your meds or see a doctor”. They have no rush or urgency and they know most of the people are very ill like myself and need their medication on time monthly. This pisses me off that they can just decide to do nothing all day and let your application sit and collect dust.

What is the point of getting the application in early if it just sits in a “get to later” pile. You think being a member already they could just go on a computer and hit a “re-activate” button and I would be active. Again I firmly believe the people who work for the county think of us (county insurance patients) as low-life scum so why should they help us in a hurry.

When I worked at better jobs then the case workers have I treated everyone equal. I never had a job where I never had a deadline. Apparently the county has no deadlines only lazy ass workers.I have worked over 10 years as a higher up manager and if it were me my case worker wold be looking for a new job and her supervisor (want to be manager) too.

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I currently have a free medical insurance that I was awarded through my County since I have been disabled and have had zero income for 3 years. I am very thankful for the insurance and they have done a lot for me but there are some issues.

My gripe is that they always let my insurance lapse. I am currently lapsed and cannot see any doctors and cannot get my prescriptions since they are not covered at the moment. This really hinders my treatment plan when I run out of meds and cannot afford to pay $4000 for one prescription.

The County insurance is set up where you fill out a large application and if you are approved you get insurance for 6 months. When that 6 months is coming to an end they will only allow you to reapply for the insurance 1 month before it expires. I have had this insurance for over 2 years now and every time they let my insurance lapse.

I turned the application in right on time. When my mom went down to the local county office the case worker handling my application said she was 3 months behind on catching up with applications. So due to this one lady being so far behind 100’s of people are uninsured. Many of those uninsured are very ill (like myself) and need their meds or need a doctors care frequently.

I expect my insurance to be lapsed for at least 3 months even though I filled out the application and sent it in a month early. I don’t get how they do not have more help to get the applications caught up. What if somebody died while waiting?

Most people cannot afford to pay $4000 for one prescription when they need 5-10 prescriptions a month. And we cannot afford to pay for any medical visits to a doctor or ER out-of-pocket while waiting for insurance even though they may back pay.

It seems like they lack care since this insurance is for the poor and lower class patients. There should be a since of urgency.

This insurance has denied almost every Lyme med I have tried to get from the pharmacy. I am to ill to speak on the phone but my poor mom has to fight with my insurance for hours to try and get the meds covered. In the end usually 25% of my meds are covered after fighting.

I have to go to a Free Clinic which is an old building with maybe 2 rooms to accommodate patients. Every time I go there it is standing room only even though I cannot stand. Nobody ever offers me a seat even when I had my severe neck pain from herniated discs and I was grunting in pain.

Wait times can be from a minimum 1 hour up to 3.5 hours with an appointment! There is only one doctor I can see and have no other choices. The one doctor I see is creepy and never believes a word I say.I guess maybe I just expect more but it seems like just because you are considered poor they can be as slow and crappy as they want to be.

Each doctor visit the doctor always thinks I am just after pain pills and not really sick. She thinks this because there are a lot of ex-cons and ex-felons who have the same cheap insurance I do and they always ask for Oxy. The waiting room at this free clinic is full of known gang members. I feel out of place when I go and very uncomfortable.

Although I appreciate having medical insurance and feel blessed at the same time there is a bunch of bs to put up with. I wish the County would treat their people with a little more respect and urgency.  I cannot wait until my Medicare card is active.

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May Is Ending – Spread The Awareness

26 May

Lyme Awareness Month

As May is ending very soon I hope that you all tried your best to spread the word about Lyme disease. I know many of us are bedridden and very ill so this can be difficult. Just spreading the word to friends and family can be helpful. Even lying in bed and posting Lyme awareness on Facebook, Twitter, Pinterest it can be seen by millions of people.

I want to thank all of those who work hard everyday to get the word out there and fight for our Lyme rights. We appreciate what you do even though we may never meet. Keep up the good work.

There has be an increase of Lyme related topics this year on TV, the internet and in the media. I think we got the word out there this year. I hope we helped save some lives and keep people from suffering from this horrible disease as we do.

This year I was able to write to Dr. Phil, Dr. Oz, write to my paper and had my story published, and I have spread the word to all my family and friends. A few of my friends said my Lyme posts are “annoying” or “that is all I focus on” but I don’t care. If I save someone from getting Lyme it is worth any negative comments I receive. When you suffer as bad as we do you can’t help but to warn others.

Now we all need to save our strength for next May. I will try to make it to the Lyme walk coming in September but I cannot be in the sun. I hope to make so I can meet others and support Lyme in any way.

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