IV Rocephin Therapy- The Cheapest Meds & Supplies I've Found

 If you are starting IV therapy, it is very overwhelming when you don't have insurance.  Here's the information I've compiled on what you need and where to find the best prices.  If you have any information to add, please let me know so that we can all benefit from this information.

OR, if you have a PICC line and your insurance company has told you it will no longer pay for your continued treatment, even though it's in your best interest to continue, this information may help you be able to afford to keep the treatment going while you have that PICC line in. I hear stories of the insurance stopping treatment too soon and a perfectly good PICC line has to be removed. Maybe this will help you continue treatment. I hope it helps someone!

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Okay, here we go…

FIRST, You will either need to get a PICC line or port put in with a surgeon, or have the infusions done daily with a doctor or nurse using one time use butterfly needles and/or 3 day iv catheter needles (peripheral IV's- if your doctor will allow this).  If you are lucky enough to have an awesome nurse friend, and your doctor will allow the peripheral IV's this is the perfect option, especially if your spouse or a good friend is willing to learn the administer the IV treatment on the days in between seeing the nurse for a new IV. I had a best friend who was comfortable enough to administer my treatments on the off days and he would also take out the IV on the last day so that the next day I could go see my nurse friend to have a new IV placed and then he would also administer the treatment that day (I was just lucky enough to have a male nurse, ha ha! But he was great and that is more important!).
We also stretched the time frame on the 3 day catheters to 5 days with no issues except once it blew the vein in my hand but you know the instant something isn't right and that when whoever is administering daily for you should know how to pull the IV, just in case. It's not as big a deal as it sounds, I promise. And btw, when that vein blew, it was only the second day of that IV catheter so we never had one issue with going 5 days during my entire 8 months… and 5 days allowed us to get in 6 treatments with one catheter. You just have be VERY good about keeping the area clean and dry and protected with the tagaderm, which is challenging but an absolute MUST. You will find you will have to "replace" tagaderms- the best way to cut away parts that are lifting and the apply a new one over top of the original one. You may need to do this several times depending on where the iv is placed. And you must keep it clean and dry. If it has to be place very low on your hand, you are not doing dishes for that 5 day period… sorry! (wink!)

Here are the supplies you will need (per month) and where to get them:
I have provided NDC numbers on everything so you can research yourself as well. I would also go to your local non-chain pharmacy if you have one and ask them if it's possible for them to help you with obtaining these items at a good price.

(All pricing is as of December 2011)

60 grams IV Rocephin (Ceftriaxone) (Comes in 1 g and 2 g vials) 

You will need 2 grams per day (1 gram the first day).    

The Medicine Shoppe- $324.95 60 1 gram vials- NDC 64679-0983-02

Drugsdepot.com- $135.00 for 25 2 gram vials-  NDC 25021-0107-20

http://tinyurl.com/cmzdxno
(Drugsdepot can only ship to addresses in CO, CA, FL, GA, KS, MA, MS, MT, NJ, NV, PA & TX)   

****Aliton's Pharmacy now matches Drugsdepot's price of $5.40 per vial for Rocephin 2 gr. That's $162 per month. They have become my one stop shop for all of my supplies and Travis is now helping many lyme patients that have found my information here. I believe he can ship anywhere. Call him! (SEE NOTE AT BOTTOM FOR CONTACT INFO) And tell him Tara sent you!*** ALITON’S PHARMACY, PORT JERVIS, NY  845-856-4120 (My contacts there are Travis and Peter)

30 100 ml Saline Bags-Sod Chloride .9% inj  

Aliton’s Pharmacy             $58.80 for 30 IV bags               NDC 00409-7984-37

30 IV Administration Sets (IV tubing)

Aliton’s Pharmacy             $68.88 for 30 sets            NDC 00264-9083-50

ShopMedVet.com            $1.00 each               http://tinyurl.com/cjmsmsd 

(***Yes, ShopMedVet is a veterinary supply company but the products are absolutely safe and good quality at a FRACTION of the price)

30 Mixing Syringes- Syringe 10cc

(These can be used multiple times for mixing meds)

Aliton’s Pharmacy            $14.99 for 30                        NDC 08290-3096-04           

30 Mixing Needle- Yale Needles 18GX1”

(These will actually last about 3 days each for mixing meds)

Aliton’s Pharmacy            $8.99 for 30                        NDC-08290-3051-95

Alcohol Prep Pads- Box of 100

Aliton’s Pharmacy  $3.99                        NDC- 86227-0122-05

If you go with a PICC line, you will also need dressing kits- 4 per month and I believe Aliton's price on that was about $50.

If you are going the needle route instead of the PICC line/Port, here’s what else you need (one or the other, or both, depending on your treatment plan):

Single Use Needles:

Butterfly Infusion Set 23G x ¾” – Box of 50

ShopMedVet.com              $15.99             http://tinyurl.com/ch9csx2

(Aliton’s Pharmacy has a similar/same needles for $93.00 for 100)
(***Yes, ShopMedVet is a veterinary supply company but the products are absolutely safe and good quality at a FRACTION of the price)

3 Day Indwelling Needles/Catheters and Supplies: (This is called a peripheral IV- the kind you get in the hospital and it stays in 3-5 days. Your doctor may or may not allow you do this but this was the answer for me.)

10 Protect IV Needle/Catheter (3 day) 

Aliton’s Pharmacy  $65.99 for 10
AND

10 7” Smallbore Ext Set w/ Microcl (3 day tubing)

Aliton’s Pharmacy  $49.99 for 10

OR

IV Catheter 24G x 3/4” (3 day) ***You must be a vet to order this item in some states and might need to order the ones above from Aliton's.

ShopMedVet.com  $1.00 each    http://tinyurl.com/cxt7thz
AND

IV T-Connector 6" Microbore (3 day tubing)

ShopMedVet.com  $1.95 each             http://tinyurl.com/d44egys

AND when using the 3 day catheters you will also need:

30 Saline Syringes- Sod Chloride 10ml Flush

Aliton’s Pharmacy  $48.99 for 60             NDC 08290-3065-47

100 Tegaderm 2x3 Occlusive Dressing

Aliton’s Pharmacy $78.66 box of 100            NDC 38514-9070-00           

*** ALITON’S PHARMACY, PORT JERVIS, NY  845-856-4120 (My contact there is Travis or Peter)

NOTE:  I know that all of this is confusing, especially if you are just starting out.  Please feel free to contact me with any questions.  I'm happy to help! Just email me at tarabtl@ptd.net. I will even speak to you on the phone if you need help. I spent a lot of time figuring all this out and want to spare anyone I can of the hassle or not doing the treatment if they need it but can't afford it. This was still expensive but no where NEAR the pricing of the "one stop shop rocephin delivery services" or a private nurse. I truly hope this info helps people.  ~Tara

The Basics. What you NEED to know if you are fighting Lyme Disease.

There are some very important things that you need to know if you are fighting Lyme Disease.

1- A HEALTHY DIET IS CRUCIAL


Your diet is crucial to your health and recovery.  If you are sick, the most important thing you can do for yourself is start learning all you can about nutrition and how to feed your body.  When you are sick from this disease, anything you put in your mouth should be nutrient dense and healthy with no exceptions.  This means whole foods and no processed foods.  Read labels and cut out any foods that contain chemicals in the ingredients that you can't read.  You will be surprised what you find out about the food you are eating when you start reading the nutritional labels.  Try to stick with fresh, organic, whole foods as much as you can.

2- NO SUGAR


You MUST avoid sugar.  Sugar feeds the Lyme bacteria.  There is NO exception to this rule.  Natural sugars are okay, like whole fruits, but NO FRUIT JUICE and keep the natural sugars to a minimum.  There are also natural sugars in some healthy things like Greek yogurt but that is okay.  Go with the plain yogurt instead of flavored and sweeten it with stevia.  Flavored yogurts have lots of added sugars.  Just remember, you are trying to avoid added sugars.  You won't be able to avoid them completely but stick with things that have 5 grams of sugar per serving or less and limit them on a daily basis.  Read labels and be aware of how much sugar you are consuming.

If you are taking antibiotics, avoiding sugar is even more important.  Too much sugar along with antibiotics equals yeast problems which can cause a whole new set of issues and symptoms if it gets out of control and if you are woman, this not something you want to deal with if you catch my drift.  Trust me.

3- VITAMINS AND SUPPLEMENTS ARE EXTREMELY IMPORTANT


Treating your Lyme Disease will require you come at it from at least three different angles- medical, natural and nutrition- and any good Lyme Literate MD will agree that you need to approach your treatment plan from both a medical and natural perspective and nutrition is key to regaining your health.  One helps the other and neither works as well on their own.

If you can find a naturopath who does live blood microscopy, that is the best thing you can do.  Looking at your blood cells, the naturopath can tell what vitamins and supplements your body needs and make recommendations.  In my opinion this is much better than just going into a health food store and guessing what you need or what MIGHT help.

There are many natural things that help Lyme treatment tremendously and I will highlight some of what I've learned about specific helpful supplements in other blog posts.

When taking vitamins and supplements it is important to buy a reputable brand.  Get them at a health food store you trust or order them online from a reputable company that provides quality products.  I get most of mine from Vitacost.com.  They have excellent, quality products at a price you can't beat.  Please note, I am not advertising here.  I am just sharing what I have found to be the best and most cost effective for me and I will be doing a lot of that to help out as many people as I can.

4- NOT ALL DOCTORS ARE AS EDUCATED IN LYME DISEASE AS THEY SHOULD BE- AND YOU NEED TO EDUCATE YOURSELF.  


If you get bitten by a tick, suspect you have Lyme Disease or know you have Lyme Disease, your choice of doctors is very important.  It is very important that you find a LYME LITERATE MEDICAL DOCTOR.  This basically means a Lyme specialist but they are referred to as Lyme Literate MD's or LLMD's.

Lyme Disease is a very political and controversial disease.  There are two very different schools of thought on Lyme Disease and Chronic Lyme Disease among doctors.

One one hand, there is the IDSA (Infectious Disease Society of America) that believes that all cases of Lyme Disease are cured with 3 weeks of antibiotics and that there is no such thing as Chronic Lyme Disease.  Personally, this infuriates me because it is so obviously wrong.  If you want to see how wrong it is, just start talking to some Chronic Lyme patients like me and you will see how real Chronic Lyme Disease is.  I bet it won't be hard for you to find a Lyme Support group that meets in your area and you can go meet some of these people and see what they've been through.  And three weeks of antibiotics hasn't cured them.

On the other hand, there is ILADS (International Lyme and Associated Diseases Society).  This a group of doctors who take another approach to Lyme Disease and it's treatment.  They believe Chronic Lyme Disease exists and understand that it takes more aggressive antibiotic therapy to treat it.  You can learn more at their website by clicking here. (http://www.ilads.org/)

If you are suffering from Lyme Disease, it is very important that you find a LLMD and avoid infectious disease doctors who follow the IDSA guidelines.  Do yourself a favor and educate yourself on the difference of these two organizations and see for yourself what the differences are and where the their loyalties lie.  Start by watching the movie "Under Our Skin" and then start learning what you can about the conflict of interests among the IDSA treatment guideline panel.  Even the State Attorney General in the State of Connecticut has launched an investigation into this issue.  Click here to learn more and keep learning all you can.  Your life is at stake.  You will learn very quickly that you MUST educate yourself and become your own advocate.

My Symptoms. The List Goes On.....

I get asked all the time what the symptoms of Lyme Disease are.  The fact is that Lyme effects everyone differently.  The Lyme bacteria is called a spirochete and it is shaped like a corkscrew.  It can literally drill it's way into any part of your body and that is why it can cause any kind of symptoms and everyone's symptoms are different.

One of the most common symptoms is joint pain but I've been spared from that for the most part and only experience mild joint paint once in a while.  This really surprises people.

Here is the list of symptoms I have experienced from my Lyme.  All of them come and go.  There is no rhyme or reason to when and why the symptoms come or go.   I don't experience them all at once and some have gone away completely over time but they usually visit me at least once in a while.  As my treatment progresses, the symptoms tend to ease up a bit and thankfully, some go away.

Excessive and Easy Bruising

Exhaustion

Fatigue

Blurry Vision

Eyes Hurt and Tired

Lightheaded

Dizziness
Vertigo

Brain Fog

Headaches

No Appetite

Nausea and Vomitting

Pain in Hips, Lower Back, Neck and Shoulders

Fainting

Increased Effects of Alcohol

Red, Itchy Bumps on Skin (I thought it was chicken pox)

Insomnia

Confusion

Loss of Memory

Bladder & Kidney Pain

Blood in Urine

Sore Throat

Depression

Anxiety

Numbness/Tingling in Arms, Hands and Legs

Difficultly Concentrating

Poor Balance (Walking Uneasy)

Itching- Whole Body

Fevers

Chills

Sweats/Excessive Sweating
Heart Palpitations

Low Body Temperature (95-97 degrees)

Abdominal Pain/Pelvic Pain

Always Cold

Unable to Exercise Anymore

Weight Loss (not a bad one....)

My Story. How I got diagnosed with Lyme Disease...

I was diagnosed with Lyme Disease on June 16, 2010 and my life forever changed that day.

I get asked all the time how and when I got Lyme Disease.  The truth is, I don't know.  I never knew I was bitten by a tick.  I never saw one or found one on myself.  All I know is that I have Late Stage Chronic Lyme Disease which means I was bitten a long time ago.  It could have been 10, 15 or even 20 years ago.  I will never know how, where or when I contracted it.

The next questions always are how did I know I was sick and how did I get diagnosed.  I think that I had Lyme Disease dormant in my system for many years that was brought out by stress, which commonly happens.

Back in 2009, I was living a very hectic, unhealthy lifestyle.  I was working a minimum of 60 hours a week and working long nights, I was overweight, I didn't eat right... I wasn't healthy to begin with.  Earlier that year, my husband's father was diagnosed with cancer and we spent that year watching him  fight and lose his battle.  We were at his bedside when passed away in October of that year.  That took a heavy toll on the whole family.

The day of his funeral I got a call from my best friend.  She wasn't attending my father-in-law's funeral because she had been training all year to do the Avon Walk for Breast Cancer and it was the the weekend of the walk.  She decided to do the walk- 39 miles- in honor of my father-in-law which touched my heart in a way she will never know.  When she called me that day she was hysterical and I could barely understand her.  When I could finally understand what she was saying, I couldn't believe what I was hearing.

A mutual friend of ours (her other best friend) had died tragically at an Arizona resort retreat and it quickly became national news.  I spent the week of my father-in-laws death going through his funeral services and the following week I spent helping my dear friend through the funeral services of our friend who was lost so needlessly at such a young age.

It was a really rough two weeks.  Without going into all the details, there was more to all of these stories than I mentioned.  It was a two week period that I will never forget.  It changed me.  And I think it "woke up" the Lyme Disease that was hiding inside me just waiting to pounce.

After the funerals, I tried to get back to work and life but I wasn't the same.  It was taking me a long time to recover emotionally.  As days and weeks went by, I thought I would feel better but I didn't.

As Spring approached, I was still not right and decided maybe I needed to get into shape and that would help.  I took the first steps to eating better and I started walking every morning with friend.  We started out slow and over time we worked our way up to 5 miles every morning.  I was losing a little weight and should have started to feel better, but I didn't.

As we continued walking every day, it was getting harder for me instead of easier.  Then it got to the point that I would get up at 6am to meet my girlfriend, we would walk our 5 miles and then I would have to go back to bed for the rest of the day.  It puzzled me that the exercise was tiring me out instead of making me feel good.

There were other strange things going on too but none of them a big enough deal to make me think anything was wrong.  I was falling down the stairs quite often and just blamed it on being clumsy.  I was in a deep depression and my husband insisted that I start therapy (for the first time in my life).  I was experiencing vision problems that lead me to go for an eye exam but they told me my prescription had not changed and perhaps I just needed reading glasses.  I broke out in red, itchy bumps and thought it might have been chicken pox but it wasn't.  I was experiencing bouts of dizziness, confusion and I couldn't concentrate.  I even fainted a couple of times.  I had trouble working and began working less and less.  When I drank alcohol, it started hitting me way harder than it ever had before.  I was spiraling down hill fast but I hadn't put it all together yet.

In June, a friend gave me a gift of a massage as a thank you for something I had helped him with.  I went for the massage on a Friday afternoon and it was fantastic.  I felt great.  It was deep tissue massage of just my back and shoulders that left me a little sore but it felt so good.  (I now know that the worst thing you can do if you have Lyme is get deep tissue massage because it stirs up all the Lyme bacteria in your body).  A day or two later, I wasn't feeling well and spent the next couple of days in bed.  I thought I had the flu and just stayed in bed.  No big deal.

When I got out of bed two days later, I walked past the full length mirror in my bedroom and was stopped in my tracks by what I saw.  I was bruised everywhere.  I stood there looking at myself and suddenly realized something was wrong.  How do you spend two days in bed and end up bruised like that?

I called my doctor and they wanted to see me immediately so I drove there right then.  As my doctor examined me, he looked puzzled and the next thing I knew, every doctor in his practice was looking at me and conferencing outside my exam room.  I left my doctor's office that day with a referral to an oncologist and a blood specialist.  I suddenly realized this was serious and I was scared to death.

I got right in to see the cancer and blood specialists and they ran tests but were just as puzzled as my primary care doctor.  There wasn't a clear answer or a clear diagnosis.  I left there with pile of orders for tests that were going to run about $3000 and I had no health insurance.

On our drive home from that appointment, I told my husband that none of these doctors have a clue what is going on and I felt like they were just throwing darts at dartboard with all of these tests they wanted me to have.  I mentioned that there was a naturopath's office on my way to the grocery store and I drove by it all the time.  I suggested that I give them a call before going for all of those tests.  What harm could it do?  It turned out to be the best decision I ever made.

I called the naturopath who was fantastic and got me right in to see her.  She did a live blood microscopy analysis and I saw my blood cells on a large computer screen where she explained what the size, shape and other characteristics of my blood cells were telling her.  As we were examining my blood cells on the screen, she also pointed out to me what she believed were spirochetes.  I had never heard that word before and didn't have a clue what that meant.  She explained that there were only three reasons for those particular spirochetes to be in my blood- either Syphilis, Rocky Mountain Spotted Fever, or Lyme Disease.... and chances were it was probably Lyme Disease.  She gave me the name of a Lyme Literate doctor that I needed to follow up with for a diagnosis right away.

I have to admit that at that moment I was relieved.  "It's just Lyme Disease" I thought.  No big deal, right?  WRONG.  I had no idea that day what a long road I had ahead of me..  I went home, made the appointment with the Lyme doctor and started googling "Lyme Disease".  I started reading and learning everything I could and watched the movie "Under Our Skin".  The more I learned, the more horrified I became as I realized that Lyme Disease was a very serious and complicated disease that was very difficult to recover from.

I had to wait a couple of weeks to save up the money to see the Lyme doctor and in that short span of a couple of weeks, I started to realize that my husband was experiencing some symptoms on a smaller scale than me and I wondered if maybe he could have it too.  I brought him to see the naturopath and have his blood cells looked too and sure enough, he had spirochetes in his blood too.  So our first appointment with the Lyme doctor was as a couple, not just me.  Thankfully we caught my husband in an earlier stage than me and his illness has not been as severe as mine.

I saw the Lyme doctor and he diagnosed Lyme Disease in both of us.  We both had blood tests that came back negative, however Lyme is diagnosed by symptoms and not just the blood test because the test is not very accurate.  This is very important to understand.  Many doctors who are not Lyme educated give you the blood test, it comes back negative and they take that answer.  The test is only about 30% accurate so a negative test means almost nothing.  Don't accept that as your final answer.

So that's my story.... the basics anyway.  I hope you continue to explore this blog.  I spend a lot of time educating myself on my disease and I am committed to helping other Lyme patients in any way that I can.  Please contact me if you would like to.  I believe whole heartedly in paying it forward and I will help anyone I can.

Wishing you health,
Tara