Alternative Therapies

Okay, let's talk Alternative therapies. I had a list HERE on recommended alternative herbal remedies for sickle cell. Well almost a year has passed by since then, and I've been told and have remembered a few more.

• Carao fruit: One of my Brazilian readers mentioned this. Apparently, she has been giving carao to her daughter who is 3, and her H&H goes up a couple of points even if she's in the middle of a crises. It's a tropical origin (South American countries), so if you aren't close to the Equator you might not have access to it. Here is a site with a picture of what carao looks like (apparently it smells weird). I haven't taken it, but I wouldn't mind hearing another testimonial from someone that has.
• Cellfood: I used to take this in Nigeria, it was shipped to me from the US. You put a few drops of this liquid into an 8. oz glass of water/juice and sip on it all day long. "CELLFOOD is a proprietary ionic fomula containing dissolved oxygen, electrolytes, 78 ionic minerals, 34 enzymes and 17 amino acids— which provides an unsurpassed oxygenating source, and nutritional delivery system, to every cell of the body. CELLFOOD's unique structure oxygenates and feeds the cells— cleaning and 'tuning up' our body's systems all day long." I fell off the bandwagon with cellfood once I had a crises but you can look at information on it HERE.
• L Arginine
• Dioscovite: This contains high amounts of thiocynate, which is mainly the nutrients found in African Yam. Read up more about it HERE.
  
• Omega 3/Fatty Acids
• Tahitian Noni Juice: Apparently it helps to boost your immune system and reduce pain. This is a statement from another sickle cell warrior..I've personally never used it before. Check it out HERE.
  
• And don't forget the old list HERE
  

Hope you are all doing well and enjoying the beginning of the summer! Happy Memorial day weekend.

My Nicosan Story

Here is a question that I got from a reader on Nicosan that I would like to address:

A friend of mine just started on Nicosan 12/12/08, due to lapse in medical coverage and not having monthly blood exchanges, he has been having severe pain every week, resulting in 2-3 ER visits/month since 9/08. Since taking it, the severity and frequency has been reduced, but not as much as we had hoped, and the other day had unexpected major crisis that landed him in ER for 3 days!! 1st time in 2 months. It has worked some,but this was disheartening to both of us, and I know most people are new to Nicosan, but if anyone could post about their experiences, is it working, a lot, a little, not at all? Just so we have something to compare it to? Thanks and I wish all of you "takers" well!!

I will leave this up for everyone to respond to.

This seems to be a trend that I've noticed from emails from other users of Nicosan. I had a friend that started taking Nicosan in December as well, but still had a major crises a few weeks later. He dropped out of it and went back to Hydrea. I felt bad when this happened, but each person has to find the best combination of meds and treatment plan that works for them.

I would love to hear the story of anyone that has been on this medication, even if it was only for a few short weeks.

Personally, (and you can read this in my archives), I started taking Nicosan late April, right before I went on vacation to Hawaii. I took it all vacation long, came home in May, started a new job and fell sick a few days later (Stress, strep throat, pneumonia). I was intubated on the ventilator---so yeah, it was a hard crises. I almost lost my faith in Nicosan right then and there, thinking it was a waste of time and money--or another drug peddled as a 'cure'.

Norio pushed me to continue with it, telling me that Nicosan wasn't to blame for my crises. "The manufacturer states that you should take it continuously for 30-90 days before expecting it to work right? So keep taking it regulary until then!" He theorized that my body was worn down prior to that, and the trip to Hawaii, stress of dealing with family, vacation, school and the new job had all contributed to me wearing down my body. "Now you are starting with a clean slate, your blood levels are perfect, and you will take better care of yourself, and you'll give the drug a chance to work right."

His adamant belief (and constant nagging), made me continue on taking the medication. I marked the days off on my calendar religiously, deciding to write days that I had pain, to days that I had no pain at all. Three weeks later, I realized that I hadn't had pain since I was in the hospital. I thought it was maybe because I had a new transfusion, my lytes were good etc. so I waited for the 3 month mark, when my next crises would normally hit before I believed.

3 months later...still no crises. Best of all, no daily pain. But I've had stretches of 4-5 months with no crises, so maybe it's just a fluke.

I hit the 6 month mark before I became a full believer in Nicosan. And I haven't even taken it regularly (I hate pills!). I would say I take it about 3-4 times a week...yet I haven't been hospitalized once since that last crises in May. I haven't even been to the ER!

So now, we are at the 9 month mark...and counting. My pain pills lie unused in my cabinet, I haven't filled a prescription since last year---I haven't even visited my doctor.

On May 8th, 2009, it will be one year since my last crises.

That is my Nicosan story. Now I want to hear yours! Leave it in the comment section or just email me.

Other Treatment

For those of you unable to get Nicosan or unwilling to join in the wonders of Nicosan, one of my readers, Charles, was kind enough to put together a list of other remedies that have been shown to alleviate sickle cell crises and pain. (Not cure---but alleviate!) I haven't tried all of these out myself, but the ones I have tried are in the File Cabinet. Please do your own research before trying any of these, and if you have good results, spread the word!

Nicosan
Jobleyn
L-Arginine (ProArgi-9Plus)
Organic Germanium
Sodium Nitrate -- is a chemical compound
Hydroxyurea
Pain and Anxiety management with meditation/awareness

Alternative Remedies
Reiki
Yoga
Acupuncture

Hydroxyurea vs Nicosan

Jay sent me a question that I think some other people might have. So we are going to do a comparative analysis on the two medications

My doctor recently put me on Hydroxyurea. I was hesitant taking it because of the long term side effect of leukemia, but in the end I took it. I've been on it since May, and since May I still was getting sick and in the hospital. Then my doctor increased my dosage. My boss is from Nigeria and told me about Nicosan, Ive never heard of it before, so I started to read about it and that's how I found you. What do you think about Nicosan and Hydroxyurea?

First of all Jay, let me correct your misconception. Hydroxyurea (or Hydrea) was used primarily for the treatment of myeloproliferative (cellular abnormality) diseases like leukemia. The problem is that this treatment might trigger another rapid cell growth (which is a cancer pre-cursor).

Personally I would never take Hydroxyurea, although several people have told me that it works for them. Nicosan is my drug of choice and it's been treating me very, very well. I'm going to break the pros and cons of both of them down just so you get a better picture.

Hydroxyurea

1. Adjunct chemotherapy drug (don't know about you, but I'm anti-cancer anything!)
   
2. Method of action: increases production of fetal hemoglobin cells by increasing nitric oxide levels (so pretty much, you can just take a soluble form of nitric oxide and cut out the hydrea altogether. Look up L-Arginine)
   
3. Very toxic to the liver and kidneys. Causes bone marrow suppression
4. Needs regular blood monitoring to check your platelet, BUN, liver enzymes and CBC levels
   
5. Long term use hasn't been fully studied..who knows what will happen for those that have been on it for 10 years?
6. It is shown to reduce your rate of crises by 30% after you've been on it for 6-12 months.
7. Causes fertility problems in men and crosses the placental barrier in women, so you MUST not get pregnant or nurse while on it or you will have a jacked up baby
   
8. The side effects are atrocious and range from hair loss, loss of appetite, drowsiness, nausea, vomiting, diarrhea, constipation, stomatitis, mucositis, anorexia....the list is practically endless. I've never talked to anyone that hasn't exhibited at least one side effect.
   
9. Has FDA approval although the pharmaceutical company keeps announcing that "the benefits outweigh the risks". (*rolleyes*)
   
10. #9 means that your insurance will pay for it and all you have is the $5-20 copay. If you don't have insurance, it ranges from $80-$200 depending on your dosage.
    

Nicosan

1. Natural and herbal. A combination of 3 herbs: Piper guineenses seeds, Pterocapus osum stem, Eugenia caryophyllum fruit and Sorghum bicolor leaves.
2. Method of action: initiates an anti-sickling effect. The cells you do have won't assume their sickle shape. This means no crises---yay!
3. Naturally processed through the body. Doesn't damage your organs in any way.
4. No extra blood monitoring needed besides your usual H&H levels
5. Long term use hasn't been studied---but all these herbs have been used in African countries for thousands of years.
   
6. Reduces the rate of crises by 80% after you've been on it for 30-90 days.
7. Only side effect is flushing (blushing) due to increased blood circulation. Most people (like me) don't even exhibit this.
8. Has orphan drug status in the US although it's fully approved in Nigeria. The only thing holding up FDA approval is the big pharmaceutical companies that want a cut of the pie. Since they don't own the patent, they can't charge you outrageously for it. The company that makes Hydroxyurea would loss their advantage in the field. They would rather us all suffer while they block the drug from being approved and keep lining their pockets.
   
9. #6 means you will have to buy it out of pocket and order it from Nigeria until the FDA lets it be sold in the US under the phytochemical name of Hemoxin.
10. If you are paying out of pocket and shipping from abroad, it's pricier than Hydrea but this stuff actually works! 1 bottle of 30 pills costs around $60.00 and this includes shipping.
    

So....which do you think I picked? I'm on Nicosan, and it works for me.

For more information, read the tabs of the two drugs in the sidebar under File Cabinet. Good luck with your decision. Stay strong, stay positive and stay blessed!

Nicosan Trial: Week One

Okay, several people have voiced concerns over me getting a crises a few days after I started taking Nicosan. I truly don't believe that it was related or that Nicosan triggered my crises. I think that I was rundown, sick, dealing with the stress of the trip, traveling, the new job and strep throat. All these factors by themselves can trigger a crises, talk less of all of them combined. So let's rule out the fact that Nicosan caused the crises...that's totally not true.

My primary care physician does know that I'm taking Nicosan, although he doesn't recommend it (he would prefer I take Hydroxyurea). But I have to do what I feel is best for me and he knows this. He is going to monitor my progress with Nicosan off the record.

The medication comes in a large capsule that goes down very easily. I've taken it faithfully for a week, and I haven't had any pains at all! I don't know if it's relatable, but I'm trying to be as objective as I can. Usually I have pain minimally twice a week or more, however this week I haven't had any.

There have been absolutely no side effects, my appetite is the same, my energy level is fine and my blood work is great. My hair isn't falling out. The only documented side effect from Nicosan is flushing (like blushing on white people), but I haven't experienced this once.

So that's the update for the first full week on Nicosan.

Dealing with Sickle Cell Without Using Drugs

My daughter who is 12 years old (has SS)is thinking about taking Hydroxyurea instead of getting monthly blood transfusions. If Hydroxyurea is not right for sickle cell people what other thing can they take or do if they don't want the blood monthly? Do you know?

First of all, know that I'm not a licensed medical professional. My views on Hydrea are just from my personal experiences and beliefs about it. It's shown to be effective for some people just not all. Also, it only drops your incidence of having a crises by what...30-50%; which when added to the side effects is not enough for me.

Keep in mind that not everyone has side effects, and my hematologist recommends Hydrea strongly to all his clients with sickle cell. This is the only FDA approved drug that is presently used in the US to control sickle cell. There are other options though.

1. There are non-pharmaceutical options like Pro-Arginine.
2. Diet modifications like being vegetarian, avoiding overly processed and fried foods and bulking up on foods rich in thiocynate like carrots, beets and green leafy vegetables. I highly recommend buying and incorporating Back to Our Roots in your life.
   
3. Stress relieving activities like pilates and yoga, as well as a regular exercise regimen.
4. Hydrate, hydrate, hydrate! Drink as much water as possible. With sickle cell, you can never drink enough water. I have a friend that is 48 with sickle cell, has never been hospitalized a day in his life. His secret? Water. He drinks 2 gallons a day! So drink up.
   
5. Rest. This is one of the points that I struggle with especially with my busy schedule. Try to get at least 6-8 hours a night. The most rejuvenating sleep is between 8pm and midnight. However, your body has to be in REM (which takes about 90 minutes from when you actually fall asleep). So try to go to bed early, sleep those hours and wake up feeling refreshed and rejuvenated. I'm a night own by nature and by my job so this is a hard one for me.
   

Those are the main precepts that I recommend for your daughter. I would also highly recommend doing some research into a bone marrow transplant. She might be able to be cured from this, so check with your docs if she's a good candidate.

I Have Bad Veins

One of the commonalities of sickle cell warriors is that fact that after a zillion hospital admissions and ER visits, eventually, our veins go into hiding from all the trauma. The medications that help us also help to scare the beejesus out of our veins as well as all those blood draws! My hands are scarred up from IVs and I don't even remember a time when I had good veins in my arms.

I'm down to my last good vein, and even that is getting hard and sclerosed. So in the near future if I keep getting sick, I'm going to have to put a longterm catheter in...yuck! These are the options for access that have been most frequently presented to me.

Porta-Cath: Also called a port, this is a closed access device that is placed under the skin usually on the chest wall. It's an outpatient procedure done under general anesthesia, and once you get it, the port can be accessed periodically as needed with a big needle that fits right in there. When you go home, they take the needle out and you just have the port still in your chest covered by skin. It's the most preferred for those on long term therapies, has the lowest risk of infection and is not detectable unless you are bare chested. It can be in you for months to years and will need period flushing with heparin (usually every month or so) to keep it from clotting up. I'm wary about having a lump on my gorgeous chest, but I guess you gotta do what you gotta do.

PICC Line: This is used for more short term IV management than the Port. It's inserted in the hospital by a certified nurse done in a sterile environment through one of your arms and threaded to the superior vena cava close to your heart. It can be in for a maximum of 6-8 weeks. They usually don't want to keep it longer because it has a risk of causing infection especially endocarditis. I've had 3 PICC lines all in the last 2 years and just have small scars that look like mosquito bites on my arms to show for it. Sometimes they leave it in after discharge for long term antibiotics or chemo.

Triple Lumen Catheter (TLC): This is in for the length of your hospital stay. It's usually placed in the larger veins of the femoral or jugular. If it's in your groin (Femoral) area, it has a high risk of infection, after all, your urinary & rectal tract are only a few inches away! Getting it in your neck is a real pain (I've had both). It may have 1-3 ports on it, which means you can get blood, some IV fluids and still get your pain shot through the other port. It has to be taken out at discharge though.

Those are the 3 main ones that I've come in contact with. My personal favorite is the PICC line, it's right in the middle for efficiency, ease of use and it's relatively fast to put in. A skilled nurse can do it in under an hour. So next time they mention any of these options, you are now in the know.

Hydroxyurea & Infertility

Now my doctors are trying to get my on Hydroxyurea like hardcore. I'm still scared about it. I know some people have used it with lots of great results, but those side effects are no joke---AND NOT BEING ABLE TO HAVE CHILDREN?? That is some crazy shit.

Well, the main thing is that if you conceive while on Hydroxyurea, your child will have birth defects. I'm not even sure I want children in the future, but not having that option because of sickle cell is something I'm not willing to take.

So there goes another reason why I won't take Hydroxyurea. I'm hoping that taking a mix of Fagara, Nicosan and Arginine will be the right combo for me. My mom is gonna get me the fagara root and I still have to figure out where I'm going to get Nicosan from, maybe I'll pick it up when I go to Nigeria this summer.

Hope you are having a great weekend...I'm going to work 3 nights in a row and then have 6 days off...wish me luck!

Insomnia

For weeks now I've had a weird sleeping pattern. Generally I work late evenings from 3pm to midnight, and this is actually my dream schedule....don't have to wake up early in the morning or fight traffic getting to work. I peak in the evenings, after 7pm or so is when I get a radical burst of energy.

However for the last few weeks, I've been having difficulty falling asleep...staying up later and later, and having to wake up still no later than 1 to get to work. Even right now it's 6am and I'm still up writing.

I know the L-Arginine is supposed to give you wicked bursts of energy but damn...this is putting me into overdrive.

Checkin' In

What's up fam?

It's been a week and surprisingly I've been well. Very well in fact. Nothing much to report...I think the L Arginine is really giving me a boost nowadays. It's like my own personal crunk juice/spinach.

Speaking of spinach, when I was younger in high school, the house mistress of my dormitory used to gather all the sickle cell students in her quarters and make us nightly a foul tasting, bitter brew that was supposed to 'cure' sickle cell. My parents believed in that hardcore and I drank that shizz faithfully to no avail, I still fell sick.

The house mistress, bless her heart would come to see me in the hospital and BRING with her some of that tea. Mary Jesus and the orphans it was sheer torture trying to keep that down on a nauseated and pain filled body. I'm so glad I graduated from that school.

So with the Pro Arginine, I'm having a field day, it's tastes so good compared to all the other concoctions I've ever tried. Hopefully the results are going to be longterm.

The Wonder of Nitric Oxide

Norion's dad sent me a forward a few weeks ago about L-Arginine that he had gotten from a fellow scientist researching the benefits of L-Arginine and nitric oxide to cardiovascular conditions. In addition, someone had left a comment on a previous post about L-Arginine weeks ago that was around the same time. Serendipity was pointing that I look into this. The more I read up on it and did research, the more information I found about this wonderful amino acid.

L-Arginine is the semi-essential amino acid that has been shown may help in the effects of cardiovascular disease and many other inflammatory conditions. It's the major source for nitric oxide synthesis.

Not that many people with sickle cell know about it, however, it's been shown in reduce the crippling crises and pain that we usually go through. One of the main attributes of Nitric oxide is that it prevents cells from sticking together, makes the blood vessels more pliable & elastic as well as keeping the blood flowing freely. It's like Hydroxyurea, without all the nasty chemotherapy drug side effects. Can I get a hells yeah!

The compound is specially formulated with Vit C, B Complex and tastes like dilute grape juice to improve memory and mental agility, and give you energy. The only side effect is mild diarrhea and most people don't even get that. Compared with the 35 debilitating effects of Hydrea, this is definitely one for the game books.

It's sold as a nutra-ceutical, so it's over the counter, no prescription needed. Be sure to get the Pro Argi 9-Plus formula as shown above, because that the one that is specially formulated for those with sickle cell. Pretty much you take a scoop of that in 4-8 oz. of water twice a day, regularly on an empty stomach. Arginine takes on the properties of whatever food you take it with, so don't mix it with juice or food, just water! That way, it will flood your system with pure, wonder working NO (Nitric oxide).

Okay, I just started taking it, so as your guinea pig, I'll report back to let you know how it goes. Wish me luck!

If you want to do some research on this for yourself, here are some helpful places to start:

http://www.scinfo.org/SickleNOarticle.pdf

http://medicineandman.com/blog/2005/07/06/arginine-deficiency-in-sickle-cell-disease-causes-hemolysis/

http://www.pslgroup.com/dg/36776.htm

http://www.pslgroup.com/dg/3E992.htm

http://www.pnas.org/cgi/content/full/99/2/552?ck=nck

http://query.nytimes.com/gst/fullpage.html?res=9A0CE2D61231F932A25752C1A9649C8B63&sec=&spon=&pagewanted=1

Why I Don't Take Hydroxyurea

Last year, after numerous bouts of falling sick, my doctor practically ordered me to give Hydroxyurea a shot. Also known as Hydrea, this is one of the medications that has been known to reduce the incidence of sickle cell crises'. When she explained it to me, it sounded good, but as soon as I had the script filled and in my hands, I started trembling.

For some reason, my skin crawled and I recoiled from accepting the two large canisters for 300 pills. I had done my research, and the list of side effects was monstrous, however she assured me that 'most people don't have side effects.'

I got home and Norio and I read the whole packet, front to back, and the more I read, the more discouraged I got about taking the medicine. Developed originally as a chemotherapy drug, Hydrea has the potential of preventing crises by actually killing off the neoplastic 'sickle cells' and prevents the developed ones from taking the sickle cell shape. Since it's the clumping of the shape that causes a crises, it's been known to reduce crises' by as much as 50%.

Except it's a cancer drug.

It's a cancer drug. Ick, ick ick! That alone comes with it's own list of complications. The list is so long it's atrocious to call it a medicine. I was having thoughts of my hair falling out, horrible GI symptoms, nausea, vomiting, dehydration, exhaustion, more anemia, constipation, diarrhea, skin turning pale, insomnia, cough, soreness, fever, chills, back pain, black tarry stools, bleeding, confusions, convulsions, seizures, blackening of nails, sores in the mouth, fatigue, itching, numbness & tingling. And that was just the stuff that didn't sound deadly.

I just really felt so scared to take it. It seemed like I would be putting poison in my body to try and rid me of this ailment. There had to be another way---there just had to be. Norio and I prayed fervently for some conviction before I even tried taking it and for some reason, the only one we got was a strong reaction NOT to take it.

I know that Hydrea has worked for some, and many will laud it's apparent helpfulness. But those two canisters sit at the back of my closet, untouched and unopened. This warrior has spoken.

Sickle Cell Medication & Drugs

I hate taking pills. I absolutely detest them. I can take them one by one, swallow them whole, but nothing gives me an enjoyment in the process. Taking pills just reminds me that I'm sick. When I'm being honest, I must say that I really don't take meds unless I'm in pain.

When it comes to pain, that is one thing I find very hard to deal with. I"m all for non-pharmacological modes of treating sickle cell, but when I'm in the middle of an L3 or greater, pass me the drugs baby.

So, in no real order, here are all the drugs I've taken in the last decade or so.

• Folic Acid: This is a vitamin that I've been taking since I started my period. It's for the increased production of red blood cells and hemoglobin and should be taken daily. Now do I take it daily? Ummm, no. Of all the pills, this is by far the easiest to take--small, yellow with no aftertaste.
  
• Motrin: It's a larger pill---my dose is now up to 800mg per pill. It's a non steroid anti inflammatory drug (NSAID) which means that it helps reducing pain caused by swelling but has no steroids. Motrin kicks ass for L2s and used in conjunction with an opioid manages to wreck havoc on an L3 as well.
  
• Vicodin/Lortab/Norco: Same family, different doses. All three are composites of a Hydrocodone/Tylenol mix, and the strength depends on the dosage. The more codeine in it, the stronger the effect. I take these only for L3s. Apparently they are easy to get addicted to.
  
• Demerol: Holy mother! Who created this shizz? Demorol is absolutely insane, total poison that totally works. It blocks the pain receptors so completely that you don't even know that you are having pain. It gives an euphoric high. For me, it makes me delirious and giddily happy, some weird concoction. It's so strong that the FDA banned it for long term pain management, because it has been known to crystallize and cause granulation of the vein. In normal speak, it turns into crystal glass and the residue stays in the your veins and makes them hard as rock. That in itself has alot of complications so most docs want to stay away from Demerol for sickle cell peeps. I used to get Demerol back in the late 90s and I still have a wonky vein that's hard in my right hand. You have to have a doc that is trained in the old school to get this prescribed nowadays. It comes with a slew of side effects, nausea, vomiting, delirium, itching, you name it.
  
• Dilaudid: This is the master of all pain drugs. Dilaudid is from the morphine family and is available in pill form as well as IV. It's not mixed with anything else, and really does work for me. I usually take 4mg. The only drawback is that I get serious side effects of anything from the Morphine family (itching!) It gets so bad that I want to scratch my skin off. So the counterbalance of the itching is~
• Benadryl: This stops the itching but has a side effect of knocking me the fuck out. I'm woozy, I'm delirious, I'm talking out of my head and spouting all kinds of nonsense. This helps though, because by the time I wake up, an L4 would have dropped to an L3 and hopefully I don't have to go to the hospital.
  

Okay, there are more out there, but these are the ones that I personally take. I will get on the soap box about Hydroxyurea but that is for a whole 'nother chapter.