Archive | April, 2012

Where I Buy Supplements For My Lyme and Co’s

20 Apr

 

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Great Probiotics For Lyme, IBS & Other Issues

19 Apr

VSL#3 Probiotic

VSL#3 is my favorite probiotic that I use that helped me through a tough time. I use the 60 capsules but there are other options. They also come in packets that are flavored or unflavored. You can purchase these from Amazon, or find them in the Costco Pharmacy but I get mine directly from the maker at VSL3.com. They come shipped in a foam cooler packed with ice packets.

This probiotic is the highest live bacteria count you can find. The capsules that I buy have 225 billion live bacteria where the packets contain 450 billion live probiotic bacteria. I pay about $55.00 shipped. Which is not bad and I really think it saved my gut.

I highly recommend these even though the cost is a little higher than most brands. The stuff you buy in the store is for those with minor bowel issues. This is the good stuff. My LLMD recommended it and it has been a life saver. I suffered from severe IBS for the past 15 years. I could name every bathroom in a 500 mile radius. IBS ruined my life since I was unable to go anywhere in public. With Lyme and co’s and taking a lot of antibiotics my stomach was bad for a month. I doubled up on my probiotics and I am happy to say I have been almost regular for 2 months. My pain pills do help some since they dehydrate me so I give 10% credit to Norco. lol

Capsule Information

VSL#3 Capsules is a probiotic medical food for the dietary management of Irritable Bowel Syndrome and Ulcerative Colitis consisting of 8 strains of live freeze-dried lactic acid bacteria.   VSL#3 Capsules are available in a 60 count bottle.  Each 2 capsule serving contains 225 billion live probiotic bacteria.  Ingredients:  VSL#3 Capsules contain one strain of streptococcus thermophilus, three strains of bifidobacterium and four strains of lactobacillus in defined ratios.  Inactive ingredients:  microcrystalline cellulose, stearic acid, magnesium stearate, vegetable capsule (hydroxypropyl methycellulose), and silicon dioxide.

Packet Information

VSL#3® is a probiotic medical food for the dietary management of Irritable Bowel Syndrome, Ulcerative Colitis, or an Ileal Pouch consisting of 8 strains of live freeze-dried lactic acid bacteria.   Each sachet contains 450 billion live probiotic bacteria and is supplied in a box containing 30 sachets.  VSL#3 mixes easily in water and has a light lemon cream flavor.  Ingredients:  VSL#3 contains one strain of streptococcus thermophilus, three strains of bifidobacterium and four strains of lactobacillus in defined ratios.  Inactive ingredients:  Maltose, lemon flavoring, and silicon dioxide.

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Side Note –

I did also recently add food grade Diatomaceous earth to take with my probiotics. The earth is a cleanser, binder, scrubber and may help get rid of parasites and eggs in the intestines. Although it will not work as well as say Alinia and Ivermectin.

Tale 2 tsp per day of the earth mixed with water or juice. I take a small glass of water and add fresh lemon juice with my earth.

Here’s a great source to buy food grade Diatomaceous earth –

Earthworks Health

 

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Florastor

Florstor was recommended to me at the Costco Pharmacy one day by the pharmacist. She told me she has other Lyme patients and they all use Florastor recommended by their doctors. I use it daily on top of my daily dose of VSL#3.

Florastor comes in capsule for or powder for children. I currently take one a day. I know you are not supposed to take this form of probiotic (Saccharomyces boulardii lyo) with certain meds so check with your pharmacist or LLMD first. Remember everyone’s body is different so what works for me may not work for you but these are two probiotics it took some time to find and help with my IBS and I am doing a lot better.

Get a $5 off coupon HERE (Exp 05/19/12)

  • Florastor cells are bigger than bacterial  probiotic cells, so yeast can provide increased gut coverage.
  • Florastor can withstand the harsh environment of the stomach, while many bacterial probiotics are destroyed by acids in the stomach before they even reach the intestines. †2
  • Florastor is not compromised by antibiotic use,†2  while bacterial probiotics are negatively affected by antibiotics.

*Florastor. It’s the #1 probiotic worldwide*1.

UNIQUE probiotic (friendly yeast-based) not attenuated by antibiotics2
POWERFUL survives gastric acids to keep your intestines functioning well
VERSATILE options appropriate for children and adults

(*from Florastor Web Site)

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Rocephin (Ceftriaxone) IV Can Cause Gallbladder Issues

16 Apr

Rocephin (Ceftriaxone) IV & Your Gallbladder

I don’t know how many times I have heard from a friend who was on or is still using Rocephin via IV that their gallbladder was either removed or had issues. I believe all doctors are aware of this problem yet some fail to disclose or relay the information to their patients. Lyme patients who were given the info may not now just how serious the problem is.There is a high risk that you will have some gallbladder problems and you may lose your gallbladder.

Your doctor most likely will give you Actigall to take with your Rocephin IV but the Actigall also has side-effects itself (see below). If you do not take the recommended dosage of Actigall you risk having gallbladder problems and possibly having you gallbladder removed.

Just from my own personal study of friends I would say at least 80% of the people I have talked to have had the issues. It’s about 50/50 on gall stones, problems versus those who had their gallbladder removed.

This is nothing new and for the most part many Lymies already know this but I thought I would send out a caution to those who do not know. If you read the labels and caution signs on Rocephin it clearly states “do not take if you have gallbladder disease” or “may cause gallbladder problems” on some web sites.

Rocephin Injections

I did want to add that the Rocephin  injections should not cause the gallbladder issues. I did the Rocephin self-injections for 2 months and I was fine. However I did have other issues such as; Injecting in my thigh made my whole thigh muscle spasm violently. I had twitches and jerking in my thigh throughout the night like aftershocks. The injections in my buttocks and in my thigh would travel straight to my bad knees and make them start hurting even worse. I also still have lumps in my buttocks. The injections are not as painful as Bicillin since the needles are much smaller.

Tip: If you do not use Lidocaine and use the saline to mix your Rocephin vial with then yes it is one of the most painful injections you can get. I gave myself one injection with Rocephin and saline and instantly my buttocks and leg began to burn like crazy and the arthritis in my knee was inflamed. Talk about extra unwanted severe pain, ouch!

 

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Gallbladder Problem Symptoms

Gall bladder problems can cause symptoms that include:

  • Nausea and vomiting
  • Indigestion
  • Intolerance to fatty foods
  • Abdominal bloating
  • Pain in the right upper and central upper abdomen
  • Referred pain may radiate to the back and the right shoulder

**(Remember these are just some of the symptoms)

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Actigall Side Effects

Side effects from actigall/ursodiol can occur. Tell your doctor if any of these symptoms are severe or do not go away:

  • diarrhea
  • constipation
  • upset stomach
  • indigestion
  • dizziness
  • vomiting
  • cough
  • sore throat
  • runny nose
  • back pain
  • muscle and joint pain
  • hair loss

If you experience any of the following symptoms, call your doctor immediately:

  • frequent urination or pain when you urinate
  • cough with fever

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Petition: The Right To Be Diagnosed And Treated For Lyme And Related Diseases

16 Apr

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US Senate: The right to be treated and diagnosed for Lyme and related diseases

As Lyme sufferers we all know the struggles we go through and have been through with getting diagnosed, finding a doctor, getting treatment, battling insurance and so on. It is time for us to stand up and fight for our rights. Please sign this petition and let’s get the ball rolling. We deserve to be treated just like anyone else who has a medical illness and we should not have to feel like we are outsiders.

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Please sign the petition from change.org  – HERE

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Our Goal

We would like to reach at least 1000 signatures by may 5th, 2012 and we cannot do this without your help. Signing this petition is quick and easy and you can choose not to have your name shown if you prefer not to. As I am writing this we have 211 signatures so please spread the word so this information can go into action. My Lyme fried who is one of the @LYMEGIRLS will see a rep from the Gillibrand office on May 5th.

Please spread the word to friends and family and wherever you can find someone willing to help. We appreciate every signature and thank you for your time.
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Why This Is Important

Every human being has their right to heal from an illness. The right to be provided with appropriate diagnosis, treatment and support. What if I told you that there is a countless number of people right here in America, who have been denied their right to have a proper diagnosis of a complicated infectious diseases related to tick bites, and then once properly diagnosed, they struggle to get insurance companies to pay for treatment. The hardest of all, is these people struggle to find support as they heal from these infections. Most doctors, their families, friends and associates do not believe these people – they doubt them because there is a LACK of understanding. Most people think that Lyme disease is easily diagnosed & cured… One is told that it is in your head… Why- because there is no awareness or advocacy for Lyme Disease and it’s associated diseases. Lyme patients want action – we want to take back our right to heal and move on with our lives in peace without fighting a brutal bureaucratic political health care system in America. Please sign this petition if you want to take back your right to heal (or if you have a family member, friend or associate that you know who has faced this challenge)!

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Petition Letter (copy and paste)

The right to be diagnosed and treated for Lyme and related diseases

Greetings,

I just signed the following petition addressed to: Senators Schumer and Gillibrand.

—————-
The right to be diagnosed and treated for Lyme and related diseases

Every human being being has their right to heal from an illness. The right to be provided with an appropriate diagnosis, treatment and support. What if I told you that there is a countless number of people right here in America who have been denied their right to having proper diagnosis of a complicated infectious diseases related to tick bites, and then once properly diagnosed, they struggle to get insurance companies to pay for treatment. The hardest of all, is these people struggle to find support as they heal from these infections. Doctors, families, friends and associates do not believe these people – they doubt them. Think that Lyme disease is easily diagnosed & cured… Told it is in your head… Why- because there is no awareness or advocacy for Lyme Disease and it’s associated diseases. Lyme patients want action – we want to take back our right to heal and move on with our lives in peace without fighting a brutal bureaucratic political health care system in America. Please sign this petition if you want to take back your right to heal (or if you have a family member, friend or associate that you know who has faced this challenge)!
—————-

Sincerely,

[Your name]

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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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Under Our Skin – Lyme Disease Film

14 Apr

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Thank You Dr. Phil – Video of Dr. Phil: “Deadly Consequences” (04/13/12)

14 Apr

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Dr. Phil “Deadly Consequences” Aired on April 13, 2012

 

I will have to say I was a little nervous and skeptical about the Lyme disease episode being viewed by millions. I was hoping it wasn’t one-sided and showing the IDSA as the victor. I just finished watching the episode and although I wish more information was exposed on the show such as coinfections, it was still a win for us Lymies.

I applaud Dr. Phil for exposing the world to Chronic Lyme disease. Chronic or Late-Stage Lyme is all too real and a living nightmare. It will change lives in the worst way and break the strongest person down. Thank you Dr. Phil for educating the public and exposing our suffering. I hope to see more media coverage of Lyme disease in the future.

A HUGE thank you to Brooke Landau, Stephanie Vostry, Dr. Phil’s staff member and Chitra Bhakti, MD (Lyme Literate Medical Doctor/ LLMD).

 

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In case you missed the Dr. Phil show today here is the episode and some other footage.

 

Dr. Phil – Deadly Consequences (Video 1 of 3)

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