Tag Archives: Mepron

Babesia – Red Dots Breaking Out Again

17 Jan
babs red dots

Neck: notice to two new red Babesia dots but there are many others barely visible to the eye and not noticeable in this picture.

 

Babesia – Red Dots Breaking Out Again

Juts yesterday I noticed the small, blood red, pin-prick sized Babesia marks are starting to break out again. I had these same tiny marks start to break out last year (or the year before) while on a combo of Mepron, Zithromax and Artemisinin.

Yes these red marks are common and many people get them and a PCP, Rheum or dermatologist will tell you they are not Babesia but these marks are tinier than the common ones.

A common red mark is misshaped or pretty visible to the eye whereas the Babesia marks are usual round, barely visible and very bright, blood-red. Plus with the common ones they start to pop up infrequently and over time as you age where the Babesia marks seem to show up in clusters after taking meds. I am told tis is because the bugs are trying to reach the skin for oxygen (this could be wrong).

Last time I broke out I knew I had never seen such a red mark on me before. Then about 2 weeks into Mepron use I could feel the bugs dying off and the tiny red dots started breaking out from my shoulders all the way to my forearms and some on my body. The new ones are breaking out from my neck down.

There is one on my neck that is a lot larger than usual and that is how I noticed the break out. I then looked in the mirror and barely could make out many new ones running down my neck to my check and shoulders. I have 20/18 (don’t ask me how my eyes are always dry from lyme and I’m lucky I still have good vision) so it is easier for me to see them. If you have poor vision you probably wont notice them.

To red more on Babesia and the red marks visit the well known Lyme doc, Dr. Jones page that is packed full of info below:

 

Click HERE for DR. Jones’ Page

 

 

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My Current Med Prices Using Medicare

17 Sep

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My Current Med Prices On Medicare

This is my first month on Medicare (yay fianlly!) so I thought I would share some of my costs for medication. I have a higher-priced Blue Shield of California PDP (Part D, Prescription Drug Plan). As you may or may not know when you get social security disability you get Medicare within 2 years. You will then need to choose if you want to keep or upgrade your Original Medicare and you will need to pick a prescription plan most likely (which is not automatically included).

Everyone is different and have different situations but for me I am single, no other insurance, and do not qualify for any SSA or other prescription savings programs. So I need everything I can get. By the way you do not get Dental with Medicare unless you choose some high price insurance plan from a third party (I believe). I cannot afford Dental or a higher priced plan other than “Original Medicare”.  So for me my total cost to have and continue with Original Medicare and my Part D prescription plan are $210 a month. I guess it beats my old $625 a month Cobra plan when I had zero income for 3 years.

I chose my plan based on the pricing for Mepron since I know I will be on it again one day. Most plans want $1000 – $1500 for one bottle but with my plan I think it will cost me around $325 out of pocket. I am no Medicare expert so do your homework and try to read the packet they send you. There is a great online tool they will send you to choose through Part D plans and compare.

I rambled on sorry…. so here are my costs so far while on Medicare, hope this helps you in some way to know what to expect at the pharmacy.

 

My Costs (remember your cost depends on your Part D plan)

 

  • Clindamycin HCL 300 MG (180 qty) – $7.00 out-of-pocket
  • Suprax 400 MG (30 qty) – $75.00 out-of-pocket (I’m told they retail for $600)
  • Fluconazole 200 MG (30 qty ) – $7.00 out-of-pocket
  • Lyme Formula Memory Tonic and Meriva-500$152.00 out-of-pocket (not covered)

 

 

*I buy all my prescriptions from CVS Pharmacy and through my LLMD office.

 

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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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Cryptolepis Added To Help Fight Babesia

12 May

Cryptolepis

I finished my last bottle of Mepron last week and insurance refuses to cover another bottle after I fought to have 2 bottles covered. Now I am back on Malarone. I decided to add in Cryptolepis since I handle Malarone pretty well.

What is Cryptolepis?

(Cryptolepis sanguinolenta) roots from Africa – As featured in Stephen Buhner’s book: Herbal Antibiotics. This root is supposed to hep kill off Babesia.

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Where To Buy Cryptolepis?

http://www.woodlandessence.com/herbal.htm

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Top 5 Must Have Supplements For Lymies

10 May

Buying Supplements

Below are the supplements I take daily and I know they are Dr. Oz approved and also my LLMD approves them. I think every person with Lyme or tick-borne diseases should have these in your collection. Even healthy people should take these daily. Probiotics are a must have and every person taking antibiotics or Lyme meds should have them. I have recommended my top two probiotics on another post HERE.

You can find all of these supplements fairly cheap if you know where to shop. I buy my supplements online from Swasonvitamins and take advantage of buy-one-get-one deals and their $2.99 shipping. I have heard Vitacost is another great source but they seem to be a bit higher than what I pay. I also buy on Amazon and use my Prime free shipping.

If you go to your local drug store they seem to be about double the cost compared to online prices and deals. I know how little money we have with Lyme and all of our medical costs so trust me I have shopped around for the best deals. You may find some dirt cheap supplements searching on Google but make sure they are a legit source.

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Top 5 Must Have Supplements

Vitamin D/Vitamin D3

Vitamin D is very important for us who suffer with Lyme disease. Many of us (myself included) are bedridden and never get to set foot out of the house. We never see or feel the sunlight. Because of this it is important to take your Vitamin D daily. Almost everyone I know with Fibromyalgia or Lyme has low Vitamin D levels. Low Vitamin D levels can make many people think they have Fibromyalgia (FM) or Chronic Fatigue Syndrome (CFS).

Vitamin D has emerged as a “star supplement” because of its many nutritional benefits for men, women and children. Vitamin D plays a key role in the proper absorption of calcium for strong bones and teeth and has been shown to support colon, breast, prostate, ovarian, heart and colorectal health. This important vitamin also supports a healthy immune system in adults. Unfortunately, too many Americans have suboptimal levels of vitamin D.

(From Dr. Oz Website on supplements)

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Fish Oil or Krill Oil (Omega 3)

I take one of these daily. I prefer the Krill oil over the fish oil. I highly recommend buying the ones shaped like a tiny red soft gel with a vanilla flavor and orderless. If not you will have a large horse pill smelling like fish. The red pills also give you less indigestion and you don’t get that fishy after taste. You want to take about 100mg per day.

Omega 3′s – Research indicates omega-3 fatty acids (found in fish oil) play a role in a variety of processes in the body that keep us healthy! People who eat omega-3 rich fish several times a week probably do not need to take omega-3 supplements, but those of us who don’t get enough from diet alone may benefit from supplementing with fish oil daily. In fact, 500 mg per day of EPA/DHA is recommended by many health care professional organizations. Omega-3 fatty acids have been found to support heart health as well as joint, brain and eye health. They also have been shown to help maintain triglyceride levels already in the normal range and may reduce the risk of heart disease later in life.

(From Dr. Oz Website on supplements)

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Ubiquinol (CoQ10)

**While on Mepron and Malarone you will need to stay off of CoQ10.

A lot of people will ask me what is CoQ10 when I mention it. CoQ10 is something we should all have since many of us suffer from Lyme depression. The older you get the less CoQ10 the body produces but CoQ10 can also deplete from taking Mepron and Malarone. I am told that CoQ10 can help with depression after taking Babesia meds for so long.

I am currently taking 800mg a day of CoQ10 just to build it back up in my system since I just stopped 2 months of Merpron. Then in a week I will switch to about 200mg per day.

What is the role of coenzyme Q10 (also known as CoQ10) in the body?
Coenzyme Q10 (also known as CoQ10) is a vitamin-like compound that aids in the production of the body’s energy. That is because it is found primarily in our mitochondria – small cell structures that act as the powerhouse of a cell. The highest concentrations of CoQ10 are where we need the most energy – your heart, liver and kidney.

How do the antioxidant properties of coenzyme Q10 (also known as CoQ10) protect my body/my heart?

CoQ10’s energy generation makes it vital to heart health, while its powerful antioxidant properties add yet another layer of protection in maintaining a healthy heart. Together with vitamin E, CoQ10 fights damaging free radicals.

(From Dr. Oz Website on supplements)

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B Vitamins

Many of us with Lyme and coinfections have cold sores or EBV issues. B vitamins can help with the sores and give us a boost of energy. Although I never notice any energy boost from B12 injections or the pills I know some do. Make sure you at least have B6 and B12 in your supplement collection if you can’t afford the B vitamin family pack.

Thiamin: Also known as vitamin B1, Thiamin is necessary for the body to produce energy from the foods you eat, and is also needed for the synthesis of DNA and RNA. Thiamin is found in a wide variety of foods, although some of the best sources of Thiamin are lentils, whole grains and pork. Thiamin can also be found in red meats, yeast, nuts, sunflower seeds, peas, milk, cauliflower, spinach and legumes.

Riboflavin: Also known as vitamin B2, Riboflavin is a basic building block for normal growth and development. It is needed for healthy energy production and also supports the antioxidant activity in the body. Riboflavin is found in a variety of foods such as fortified cereals, milk, eggs, salmon, beef, spinach and broccoli.

Niacin: Niacin is also known as vitamin B3, and supports over 200 chemical reactions in the body including energy production and fatty acid synthesis. Niacin in the form of nicotinic acid has studied for its role in cardiovascular health. Good sources of Niacin include beef, poultry and fish as well as whole wheat bread, peanuts and lentils.

Pantothenic Acid: Also known as vitamin B5, pantothenic acid helps support fatty acid synthesis and energy production in the body. Pantothenic Acid is widely available in plant and animal food sources. Rich sources include organ meats (liver, kidney), egg yolk, whole grains, avocados, cashew nuts, peanuts, lentils, soybeans, brown rice, broccoli, and milk.

Vitamin B6: Involved in over 100 cellular reactions throughout the body, vitamin B6 is instrumental in keeping various bodily functions operating at their best. B6, also known as pyridoxine, is needed to metabolize amino acids and glycogen (the body’s storage form of glucose), and is also necessary for normal nervous system, hormone and red blood cell function. Vitamin B6 is fairly abundant in the diet and can be found in foods such as meat, poultry, eggs, bananas, fish, fortified cereal grains and cooked spinach.

Biotin: Biotin, or vitamin B7, is commonly found in foods such as brewer’s yeast, strawberries, organ meat, cheese and soybeans. For those who are biotin deficient, studies show that biotin may help in the health of hair, skin & nails. biotin also supports healthy carbohydrate, protein & fat metabolism.

Folic Acid: Also known as vitamin B9, folic acid is needed for DNA synthesis, the formation of red blood cells and for the metabolism of amino acids. Folic acid is most commonly known for it role in fetal health and development as it is critical for the formation of a baby’s spinal cord and nervous system. This important developmental process occurs during the initial weeks of pregnancy, and so adequate folic acid intake is especially important for all women of child-bearing age. Fortified foods such as breads and cereals are good dietary sources of folic acid. Other good sources are dark green leafy vegetables such as asparagus and spinach as well as brewer’s yeast, liver, fortified orange juice, beets, dates and avocados.

Vitamin B12: Vitamin B12, or cobalamin, plays a critical role the pathways of the body that produce energy. It is also needed to for DNA synthesis, red blood cell formation and for healthy nervous system function. Individuals who follow vegan or vegetarian diets may benefit from a B12 supplement since B12 is predominantly found in foods of animal origin such as chicken, beef, fish, milk and eggs.

(From Dr. Oz Website on supplements)

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Vitamin C

Vitamin C can be used to support the immune system but it is also used in the Salt/C protocol. With Lyme and co’s we already know we have a low to non-existent immune system. We should be taking immune boosters and immune support from other supplements and herbals of your doctors choice but Vitamin C is one you should have already. I take chewables and capsules and about 1000mg per day or more.

Vitamin C supports a healthy immune system, a common worry in the winter months. Vitamin C supports the body’s defense system by protecting the integrity of cells, and affecting the production and function of white blood cells. Vitamin C is a powerful antioxidant that helps fight against free radicals in the body. Free radicals are molecules that can harm your healthy cells and negatively impact the way those cells function in the body.

(From Dr. Oz Website on supplements)

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Top 5 Supplements

  1. Vit D/Vit D3
  2. Fish/Krill Oil
  3. Ubiquinol (CoQ10)
  4. B Vitamins
  5. Vitamin C

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Help Remove Outdated IDSA Guidelines From The NGC

15 Apr

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Please Sign This Petition

Click HERE to go to lymedisease.org and sign the petition for a great cause. We thank you for your help and please spread the word.

Why The Petition Is Important

Whether you or someone you know has Lyme disease or not we need your help and support!  The current IDSA guidelines are outdated and inaccurate. Those of us who suffer from this horrible disease have to fight for everything just to save our lives. The IDSA guidelines are just one of many things the Lyme community has to protest yet nothing is being done to update the guidelines yet. These guidelines are a Lymies worst enemy.

The IDSA believes that 2-4 weeks of antibiotics will “cure” Lyme disease and they do not believe in Chronic Lyme disease. Chronic Lyme disease is all too real and the IDSA could not be any more wrong. When a Lyme suffer is prescribed antibiotics from their Lyme Literate Doctor they are given 1-3 months worth of antibiotics usually. We go to the pharmacy to have the prescriptions filled only to find out 5-14 pills are all that will be covered by insurance. Then we have to fight with insurance to try and get at least a months worth filled. After going back and forth with phone calls for weeks the insurance may give in and cover one month or they will deny the coverage.

As a disabled Lyme sufferer I can tell you the last thing we need is to be on the phone fighting just to live. It is highly stressful and not good for healing. For me my insurance only covered 5 pills of Zithromax for my first treatment. I paid $120 for the rest out-of-pocket. I was prescribed Merpon and at my pharmacy it costs $1,500 out-of-pocket. I was only covered for one months worth and the next 2 months were on me. After having no income and being single ,of course I do not have a dime to my name so I couldn’t continue with that treatment. I could go on for days but this is just an example of how these guidelines can affect us down the line.

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From The Lymedisease.org Web Site About The Guidelines
Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.
The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.
This is wrong because:
  1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
  2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
  3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
  4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.
Sign the petition to urge:
  • The NGC to remove the guidelines as its listing rules require.
  • The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease.

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Sign the Petition

HERE

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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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