Day 153: Doctor Visits Next Week

I started running a fever at like 6 am today..it didn't break until 3pm. That was agonizing.
Other than that I've been so so today. I have two doctor appointments next week: one with a family doctor/ob gyn and another with a therapist. On top of my lovely Crohns, I have precancerous cells on my cervix once again. This is like the 3rd time I'd have to have them removed. I found out about them over a year ago and have yet to do anything about them so I'm going to be proactive. Then on Wednesday, I'm going to a therapist. It's way past time for me to do deal with my emotions..so once again, being proactive.

That's really the only update I have for today. (plus i have someone looking over my shoulder and don't feel like i can be 100% right now)

Day 153: Late Night Drawing

Day 153: Late Night Poetry

Poetry is good for the soul. Writing in general is. I would like to include poems written by others on this blog and on my prayer blog (www.prayallday.blogspot.com) Please email me your submissions: shortjen04@yahoo.com

Don't Say I Didn't Tell You

Why aren't you listening?

I keep telling you but why aren't you listening?

I can't do this anymore, do you even hear me?

It's too much weight to bear

Too heavy, too many tears, too much

But are you listening?

What do I have to do to make you hear me?

When will you know I'm for real?

I know it might take a lot

For you to help me, to really help me

I won't put that burden on you

I'll try to help myself

But if it doesn't work, please remember I told you

And you weren't listening

**This one was posted previously, but it's weighing on my mind so i reposted**

Touch Me, Kiss Me

Touch me, Kiss me

Do you even know I'm here?

You act like this is normal

Is there something that you fear?

I feel like you can't see me

Or maybe that's what you choose

Something has to change quick

Or you'll stand something to lose

I've asked you. No, I've begged

And yet you act like it's ok

To not touch me, to not kiss me

Is there nothing that you crave?

I'm lonely and I'm sad

But you've heard it all before

You slide by with bare minimums

And never attempt more

I don't want anyone else

I don't want to stray

But if you don't touch me, don't kiss me

You're going to lose me someday

I'm truly at wits end

Yet I'm chained, not quite free

Please, you must do something quickly

Touch me

 Kiss me

Strong

I'm strong

You may not know it

But I'm strong

I cry, I break down

And I'm strong

You've seen me shake, you've seen me tremble

You've seen me strong

I get confused and I get lost

Broken and exhausted

On my knees and at wits end

And I'm strong

I get defeated

I forgive

I suck it up

And I live

I scream, I argue

I shake my fists and I throw fits

Tears flow from me like raindrops

And I make mistakes and I forget

I hurt myself and I hurt others

And I let others hurt me too

And I'm strong

I get embarrassed, I get tongue tied

I get lonely and depressed

I sing in the shower and in the car alone

And I burn dinner to a crisp

I pray hard and I beg

And I get sad and fall apart

I never know what I'm doing next

I never knew from the start

But I'm strong

My life may be in ruins

And I cry myself to sleep

But I make it through each day

You know why?

Because I'm strong

Day 152: Part II: Alpha Lipoic Acid

Alpha Lipoic Acid

What is this? Has anyone ever heard of it? It is new to me. So what do I do when I don't know enough about something? GOOGLE the heck out of it! So once again, I've compiled some info but there wasn't much...if you find any yourselves..pleased let me know

Information

Alpha lipoic acid (ALA) has many functions, but it's one of the most effective free radical scavengers, and the only one known to easily get into your brain.
It also has the ability to regenerate other antioxidants such as vitamins C, E, and glutathione. So, when your body has used up these antioxidants, if there's ALA around, it helps regenerate them.
You may not know this, but glutathione is another very important antioxidant. You can get it from supplements, but the only form that works effectively is the reduced form, which is difficult to absorb when taken orally. It is much more cost effective to supplement with precursors, or items like alpha lipoic acid that regenerates glutathione.
Alpha lipoic acid also recycles coenzyme Q10 and NAD (nicotinamide adenine dinucleotide).
But, if that wasn't enough, this powerful antioxidant is also:

• A great modifier of gene expression to reduce inflammation

• A very potent heavy metal chelator

• An enhancer of insulin sensitivity

The benefits of ALA can appear near miraculous. For example, according to Dr. Berkson, Russia has successfully used ALA intravenously to reverse ischemia reperfusion injuries by injecting it right after a heart attack or a stroke.
And people with diabetes or metabolic syndrome tend to do much better when taking lipoic acid, as it enhances insulin sensitivity.
There's even been quite a bit of research showing it can restore T cell function. T cells are a type of white blood cells that are of key importance to your immune system, and are at the core of adaptive immunity, the system that tailors your body's immune response to specific pathogens.
What Health Conditions Can be Treated With Alpha Lipoic Acid?
Clinically, alpha lipoic acid seems to be a useful supplement in treating hepatitis C. It can also be used for painful nerve conditions in diabetes, and may help slow down the aging process itself through its reduction in free radicals.
Dr. Berkson uses ALA along with low dose naltrexone (LDN) for the reversal of a number of more serious health conditions such as:

• Lupus

• Rheumatoid arthritis

• Dermatomyositis (an inflammatory muscle disease)

• Autoimmune diseases

Most of his patients normalize in about one month on this combination of ALA and LDN.
http://www.huffingtonpost.com/dr-mercola/antioxidants-benefits_b_509655.html

One of the newest treatments in Crohns disease research is Low Dose Naltrexone (LDN) and alpha-lipoic acid (ALA) used as an alternative Crohns disease treatment. This combination of a drug and a nutritional supplement is looking like a possible future Crohns treatment, hopefully. It seems to work for cancer and autoimmune diseases like Crohns, Ulcerative colitis, Lupus and more.

Testimony

I have actually made an appt with Dr. Berkson in May 2010. I will be going out to his clinic in New Mexico for 2 weeks of IV ALA treatment. I will let you all know what he recommends as far as dosing and supplements.
He is going to treat my Crohn's. He uses IV ALA in conjunction with LDN to treat Crohn's as well as various supplements. I am not sure of the details, they of course will not tell you that over the phone. But I am excited. It is a huge out of pocket expense, but as I plan on having children in the next few years, I want to get as healthy as possible. And I am willing to pay or try almost anything so that I can do that.

As I said, I will definitely share my experiences in detail with the group. I am on a cancellation list so if appts earlier than May open up, I will be flying out sooner than May (I hope)!

Later Post by same patient:

I am scheduled to be treated by Dr. Berkson in mid-May for my Crohn's. I will receive 2-daily ALA IVs and 1 daily B-12 injection, in additional to myriad tests and consults with Dr. Berkson. I can't wait! I am already on LDN for my Crohn's, which the Dr. also uses to treat autoimmune conditions, but am still having intermittent flares and other symptoms. I am hoping the treatment by Dr. Berkson will give me the final push I need into (hopefully) remission or something like that. I plan on having children in the next 2 years, so I would like to get as healthy as possible.

 

 

Websites



http://www.journey-with-crohns-disease.com/crohns-disease-treatment.html

http://www.ncbi.nlm.nih.gov/sites/entrez?orig_db=PubMed&db=pubmed&cmd=Search&TransSchema=title&term=American%20Journal%20of%20Gastroenterology%5BJour%5D%20AND%202007%5Bpdat%5D%20AND%20Low-Dose%20Naltrexone%20

Day 152: LDN for Crohn's and Colitis?

I'm super interested in trying LDN while I wait to hear back from Northwestern..I mean why not? Who knows, I may not even need any radical treatment! It's worth a try and it would eliminate my need for narcotic pain killers, how cool would that be? I called my nurse tonight and left her a message so she would have it in the morning...I told her what the drug was, what it was called, that the clinical trials went well, and that I could order it from Canada but I'd REALLY like for my doctor to prescribe it. In other words, I let her know I would try it regardless so make it easy for me lol. Hopefully she'll call me back tomorrow, no later than Monday atleast with an answer from my doctor. He seems pretty willing to experiment with me...i mean this is way less risky than a stem cell transplant, right? So say a prayer he says yes and it works. Below is some info about LDN and some testimonies that offer good info too!

Article:

Use of naltrexone reduces inflammation in Crohn's patients

Thursday, May 19, 2011
Hershey, Pa. -- Naltrexone reduced inflammation in Crohn's patients in a research study at Penn State College of Medicine.

Crohn's disease is a chronic inflammatory condition of the gastrointestinal tract causing abdominal pain, diarrhea, gastrointestinal bleeding and weight loss. Treatments for Crohn's disease are designed to reduce the inflammation but may be associated with rare but serious side effects, including infections and lymphoma. Research suggests that endorphins and enkephalins, part of the opioid system, have a role in the development or continuation of inflammation.

Naltrexone is a drug used to help recovering alcoholics and drug users stay clean. It inhibits the body's opioid system that regulates pain and is involved in cell growth, repair and inflammation. Naltrexone binds to a protein receptor that blocks the effects of opioids, including the body's own enkephalins and endorphins, substances that reduce pain and produce a feeling of wellbeing.

"Although the cause of Crohn's disease is unknown, research suggests it involves a complex interplay of environmental, genetic, microbial, immune and nonimmune factors," said Dr. Jill P. Smith, professor of medicine. "We hypothesize that the opioid system is involved in inflammatory bowel disease and that interfering with an opioid receptor will lead to the reversal of the inflammation."

Researchers studied 40 patients with active Crohn's disease. Patients received either naltrexone or a placebo for 12 weeks. All patients then continued on naltrexone for an additional 12 weeks. This was a double-blind study with neither the patient or healthcare provider knowing which treatment was being received.

Eighty-eight percent of those treated with naltrexone had at least a 70-point decline in Crohn's Disease Activity Index scores compared to 40 percent of placebo-treated patients. CDAI is a point system used to quantify symptoms in Crohn's patients. Researchers noted no statistical difference at four or eight weeks of treatment, suggesting a response requires at least 12 weeks of treatment. Results were published in the journal Digestive Diseases and Sciences.

Gastrointestinal inflammation was evaluated by appearance of the intestine on colonoscopy and scores from biopsy specimens. After 12 weeks, researchers noted no change in those taking a placebo. However, 78 percent of those on naltrexone experienced healing in the lining of the intestine.

For those patients who received a placebo for 12 weeks and then were placed on naltrexone for the following 12 weeks, 70 percent experienced at least a 70-point decline in the CDAI score and healing of the colon as seen on colonoscopy. Patients who continued use of naltrexone for an additional 12 weeks (24 total weeks) had a further 75-point decline in CDAI scores, leading to remission (score of less than 150) in 50 percent of the patients.

"We report that naltrexone improves clinical and inflammatory activity of subjects with moderate to severe Crohn's disease compared to placebo-treated controls," Smith said.

The researchers are planning clinical trials to look at use of naltrexone in children with Crohn's disease and have secured orphan drug status from the Food and Drug Administration for the use of naltrexone in children with Crohn's disease. Smith and Zagon hold a patent for the use of naltrexone in inflammatory bowel disease -- Crohn's disease and ulcerative colitis.

The National Institutes of Health's Broad Medical Research Program funded this project.

Other researchers on the project are Ian Zagon, Ph.D., Department of Neural and Behavioral Sciences; Sandra I. Bingaman, R.N., Aparna Mukherjee, M.D., and Christopher O. McGovern, B.S., Department of Medicine; Francesco Ruggiero, M.D., Department of Pathology; and David Mauger, Ph.D., Department of Public Health Sciences.

http://live.psu.edu/story/53494
Testimonies: (Each color is a different person)

 I've used it for over a year now. I would highly recommend you try it first along with a restricted sugar diet. It has made all the difference for me and many others. I have crohns, but LDN is good for any autoimmune and many other types of disease. You'll be able to find LOTS of good info and people to answer any questions you might have at: http://health.groups.yahoo.com/grou...
Be sure to check out their LINKS and FILES sections...so much good stuff! If your GI won't prescribe, others will, or you can also order through Canada without a Rx...let me know if have any questions :)

I have also used LDN for over a year very successfully. I also use SCD and VSL #3. I think that these 3 things have really turned my health around. My diagnosis is pancolitis. The only other medicine that I take is 400mg of asacol once or twice a day.
Once you try it, it may take a couple of weeks to see a difference but stick with it. I was in your situation and they were talking about starting Remicade. I am so glad that I went on LDN. Please remember it is not an instant cure. I still had to change my diet and practice good self care but it made a huge difference. Good luck!

 

 I have been taking 4.5 mg of low dose naltrexone daily at bedtime. It has given me my life back and kept me from meeting surgeons. You can read my story in detail on my blog at http://tinyurl.com/3w8v6v2 . My fear was exactly what your situation is now. My PCP wouldn't prescribe it and my GI wouldn't even discuss it. These people not only don't think outside the box they HIDE inside the box. The time may come when they change, but not in time to save your colon. If you are on Facebook there is a closed group you should check out: "Got Endorphins? LDN" My lesson: I am the only person responsible for my health. The days of presenting myself passively to a doctor and plaintively asking to be healed are over.

 

I use the 50 mg and dissolve it also. Very easy and MUCH cheaper this way. Also, it's better to do it that way because not everyone does well on 4.5 mg. I can't tolerate it. I started at 1.5 mg and it worked wonders. I slowly increased up to 3.5 mg and noticed I was having more and more problems, so I went back down in increments until I felt the best. I've found that 2.25 mg works the best for me. So don't be afraid to experiment with the dosage to find the one that works for you. I get mine from River Pharmacy in Canada

 

I kept a diary of my starting on LDN. Its titled LDN and me, a personal diary. You should be able to find it in the Treatment section (Why it's not in the LDN section I'll never know?)
Side effects (for me) was the occasional vivid dream, but they soon faded away. Aside from them, no side effects. Nada! Zilch! And I've been on it daily since November of 07.
My dose is 4.5 mg. That was the dosage used in the original Penn State study that Dr Jill Smith did. I've heard of people going lower, but I don't know if the lower doses work.
I took a printout of the above study, the name of a Canadian compounding pharmacy & the name of a US doctor who consults via telephone to my GI. She looked at the study (she went through the entire study posted in the American Journal of Gastro-eneterolgy) and agreed to put me on it AND convinced a local pharmacy to compound it.
It has been a success story for me since going on it; so much so that my GI placed more patients on it since. To date, all of us are doing extremely well.

 

 if you try LDN, be patient and give it time to work! I started off at 1.5 mgs for 2 weeks, then increased to 3 mgs for weeks and since then have been at 4.5 mgs. 4.5mgs is considered (generally) to be the optimal dose. I had very minro side effects like appetite suppression and vivid dreams, but that went away within a month. Hopefully, there will be more testing on this substance in the future that will work out the dosing. But for now, 4.5mgs is generally considered standard. However, should you reach 4.5 mgs and feel side effects that are unbearable that you did not feel at 3 mgs, you may consider taking the lower dose. If you are really concerned, you may want to get your LDN script written for .5mgs so that you can increase your dosage by .5 mgs and increase very slowly.In addition to LDN, I have received intravenous Alphia Lipoic Acid treatment last May--I am currently still doing the treatment, only orally now. I do feel that my insides are SLOWLY changing--I was told by Dr. Berkson (who gave me the ALA treatment) that this is a slow working therapy and takes time. That being said, I feel different. But I do still have some minor bleeding and mucus and slight pain occassionally. But it is nowhere near where I had been. I am getting better very very very slightly everyday. My treatment regimine has taught me to be very patient.

LDN is a very diluted form of the original drug Naltrexone, which is used for substance abuse in its much higher original dosage. Drugs are often compounded by the pharmacist when the manufacturer does not make the dosage desired, or when a manufacturer does not make a particular formulation of a drug.
Here the important thing is to use one of the approved LDN pharmacies on the www.lowdosenaltrexone.org website. There is no reason to use any other pharmacy, as you can have it delivered anyplace. I use “The Compounder” in Aurora Illinois. “Skip’s Pharmacy” in Florida is another good source. Don’t risk your results using a pharmacy that has to learn how this is done properly.
It is generally thought that six months and even a years time is needed to see if LDN is going to be beneficial.
That is a disadvantage, but it also has many advantages that make it worth trying.

***I want to make a note that I find interesting about this testimony...he says that it typically takes 6 months to a year to see results..but several Crohnies have said it had a quick response...so IDK??

 

My son has been on LDN since August 2009, he has been in remission for most of that time. He has not been on any drugs other that Cipro and Flagyl (for a fistula/abscess) he was on these drugs for 3 months before we started LDN. We saw results with the LDN within 4 weeks, but we were also following SCD and had started hyperbaric oxygen therapy at the same time.
Mitch starts to feel worse if we try to take out one of these things, tried adding in a few new foods - they didn't agree with him. Hyperbaric oxygen therapy was started specifically to help heal the fistula.
He did well with just the combo of SCD and LDN, but his CRP never came down to a normal range, and he still had urgency in the morning.
With the addition of HBOT it seems to kick him over to real remission, where he has no urgency, CRP is normal and he's got a great appetitie and energy.
In the past year and a half he has not taken a break from LDN.
Also, his LDN was compounded incorrectly last January (lactose was used as a filler) and he definitely was heading into a flare - CRP went up, urgency morning and night, and starting to get stomach pain and nausea again. Once we got that corrected he started feeling better within 2 weeks. Took a lot longer for the urgency to go away though.
So for us - LDN was not a miracle drug - but in combination with a few other things it's working great.

 

More info on these sites:
http://www.ncbi.nlm.nih.gov/pubmed/17222320
http://www.sciencedaily.com/releases...0902133047.htm
LDNscience.org
 www.lowdosenaltrexone.org
http://www.crohnsforum.com/forumdisplay.php?f=32 (SOOO many posts about LDN for Crohns)
http://www.dailystrength.org/treatments/Low_Dose_Naltrexone

Go to dailystrength.org. Join the site. Join the Crohn's and UC Support Group. Type in LDN in the search box beside discussion under the support group page...you will find soooo much info at your fingertips!! And the site is a true blessing!

SIDE COMMENT: WHAT IS ALA??Alphia Lipoic Acid? ANYONE??? I'm going to do research and post!!!

Day 151: Surprisingly Well

Actually not in intense pain today..then again I slept all day again so I'm not sure if I would have noticed if I was...hoping to get to go out to eat, i think it'll help with my mood..we'll see.

Chicago Update: sending in my insurance info to get the colonoscopy approved, will let you know when I find out something

Day 150: I guess I'll get some sun

There isn't enough money in the account to keep gas in the car this week which means Jon has the car all day every day and I'm stuck in THIS house. I've been taking alot of Ambien so I can just sleep my days away but I'm not entirely sure how healthy that is. Maybe I'll attempt a walk, not sure how well I'll do with all the pain I've been in but it's worth a try. Lady is 100% out of food, I'm hoping she can wait for Jon to get home so I don't have to carry that back from the store.

I really miss my family and my friends. I like it out here...like the scenery, but without a companion, it's really hard to stay upbeat. I'm gettig really depressed. I mean, I already was before I came out here, but it was largely linked to the trip to get here, I dont know. Maybe change scares me now more than it used to. I have no clue. All I know is that since about January, I've stated entering a dark place in my mind that scares the hell out of me.And this place is definitely known as depression. It has really taken alot out of me to admit that to well, everyone. But I think it's a healthy first step to recovery. Even though it's taking everything in me not to delete this entire post and start over, omitting this last paragraph and including something more upbeat like California is awesome and I love being married to a man who barely looks at me...sorry there i go again. maybe it's just best I go for now, rather than keep saying whats on my mind. would hate to offend someone who is in bigger than denial than me...man, they just keep coming, chaoi for now!

Is Anyone Out There?

It's crushing me

It's taking over my body, my mind, my soul

I look up from where I'm laying

But see no where left to go

There used to be this tiny light

Over there in the corner

I used it to guide me through the room

It's only a room now, bigger things have become the former

Through that light, is another world it seems

On the other side of that door

were ones who used to see me

We had such good times

But all good things must end I suppose

I miss them though, such beautiful names

Like grace, mercy and faith, and love

They don't visit as often now

But it's not them you can really blame

 Everytime they came by

The darkness would take the fame

Eventually it became just me and him

Alone in this room

The glympse of light too far from me

So I sit and look upon it

From quite a distance

I can't reach it even when I want to

Darkness only takes over it with my resistance

So we socialize alone in this room

I stare at it, it stares back unconsumed

And this continues every day

As darkness makes me its muse