Crohn's Disease Forum » Books, Multimedia, Research & News » MAP Vaccine Ready for Human Trials - Could be Used for Crohn's


 
10-31-2014, 07:41 AM   #541
baistuff
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Let's not forget vaccines when it comes to successes. What are the reasons for there not being an ebola vaccine yet?

Vaccines certainly represents some og the best advances in modern medicine, and personally I think will be the key to dealing with many ailments.

They are not as easy as they sound though. Many viruses are tricky based on genetics, receptors, proteins inside and outside of viral cells. 15 years ago everyone said an HIV vaccine was around the corner. I remember a number of us having a good laugh at that one. Yeah, we will probably get one at some point, but they take time. Even the goddamn flu changes season to season, and that kills more than ebola or HIV nowadays.

Ebola until recently was not considered a virus needing a ton of effort. Prevention until recently was actually pretty easy. But since today we care that people with potential exposure can ride their bikes and sneeze in public b/c it's politically correct, more than we do actually taking some unpopular steps in stopping its spread, we are where we are. Once more people get it, we isolate more blood, study the virus, the antiboides to it, some of the responses to it- how it triggers DIC, vessel leakage etc... we will get there. Will just take time.
10-31-2014, 09:08 AM   #542
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Besides some testicular tumors (which may be more a hormonal response) and some liquid malignancies (non solid tumors like hodgkins, some leukemias,) please name one cancer in adults that is CURED with chemotherapy. I will go organ by organ.

Breast- can be cured with surgery, highly responsive to HORMONAL treatment. Data suggests increases disease free survival with some chemo. No proof chemo CURES the disease. Radiation is of benefit

Prostate- Can be cured with surgery, also high responsive to HORMONAL treatment. Poorly responsive to chemo. Radiation shown to be of benefit

Lung- very little data to suggest chemo adds to disease free survival. Actually in advanced disease, studies show chemo worsens quality and quantity of life

Pancreatic- Poorly responsive to chemo

Stomach- poorly responsive to chemo

Esophagous- poorly repsonsive to chemo

Brain- Poorly responsive to chemo. Sometimes responsive to radiation

Primary liver- Poorly responsive to chemo

Head and neck squamous- Poorly responsive to chemo. Radiation may be of some benefit

Skin- melanoma- Can be cured surgically - Not treated with chemo. Some Antibody treatments, immunologics may be of benefit

Kidney- can be cured with surgery. Recent evidence shows some increased survival with various treatments, mostly biologic treatments

Colon- Can be cured with surgery. Increased disease free survival with chemo, but not considered curative

Soft tissue sarcoma- poorly responsive to chemo, can only be cured surgically.

GYN- poorly responsive to chemo. surgery can be curative if caught early. Vaccine to prevent cervical.

Thyroid- can be cured with surgery, RAI. Not very responsive to chemo

Malignant Schwannowa- treated surgically

Multiple Endocrine Neoplasia- poorly responsive to chemo


Also, keep in mind, except for testicular, ALL STAGE 4 (metastatic cancer) is considered incurable regardless of treatment method.


It is unclear why liquid tumors and testicular tumors respond. may have to do with the neovascular process in solid tumors. May because of other singaling pathways, hornmones, turnover of blood cells. Though keep in mind that most leukemias in adults and myeloma ares still not curable. Yes, can get some remissions, but they often return.


I also just did a literature search on "bone marrow transplants curing Autoimmune diseases" and came up empty. Can you please cite evidence to such a claim? I admit I don't know much about this subject, but certainly would welcome the change to read up on it.
You said no cancers can be cured via chemo. Now you're excluding blood cancers, even though those are valid examples.

Here's news about the recent Hepatitis C cure:
http://www.thestar.com/life/health_w...afford_it.html

Here are example of autoimmune diseases being cured by bone marrow transplants:

http://www.ncbi.nlm.nih.gov/pubmed/17908668

http://www.emaxhealth.com/1020/bone-...crohns-disease

http://www.ctvnews.ca/health/sclerod...rapy-1.2071491

http://ottawacitizen.com/news/nation...5b-action-plan

https://www.bcbsal.org/providers/policies/final/485.pdf
10-31-2014, 09:34 AM   #543
baistuff
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1) Youve cited some anecdotes- not hard evidence, and that is only in your first citation. Don't get me wrong, the case reports are important, but we don't determine what is a "cure" for the public baed on case reports. Should it warrant more studies? for sure.

2) please don't bring internet media outlets as evidence. They are not. Again. Let's study them, but to claim that have "cured" things is way premature. I've been on no meds and feeling fine 4 plus months post FMT, but you will NOT hear me say FMT cures crohns let alone me saying I myself am cured. It's factually inaccurate.

BTW- the 2 patients in the study on pubmed- how are they doing now 7 years later?

The new TREATMENT for hep C is exciting. Let's see about if it's a cure. viruses are a funny thing. Remember the baby who was "cured" of HIV a couple of years ago? woops.
10-31-2014, 04:10 PM   #544
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Everyone is entitled to an opinion and there is surely many of them being voiced here!

If i owned Remicade or Humira and I was making several BILLION dollars a year out of it, i would want to protect my 'interests'. If a modern t-cell vaccine could potentially releive the disease state in hundreds of thousands of people with Crohns, who are currently my 'customers', each paying $40,000 a year to have Remicade or Humira, then it is in my interests to know about this new vaccine and if possible, to buy it.

That is just perfectly logical and there is no argument that we, as sufferers of Crohn's who are taking Remicade (or not) should be well prepared for a drug company to buy the vaccine (if it works) and then charge us as much money as they can to make as much money as they can from the 'cure'.

To suggest Baistuff, that any of us believe in conspiracy theories because we are stating the obvious- i think that is a bit much.
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diagnosed 1994 aged 18. 3 surgeries. Remicade is my drug.

I believe this could cure crohns disease.

-Dr John Hermon -Taylor is trying to cure Crohn's disease.
11-02-2014, 03:24 PM   #545
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From what I've read, Prof. Hermon-Taylor has been working on this problem a long time. He's not growing any younger while he's trying to push this forward. My guess is that he and his colleagues will try to bring it to double-blind placebo controlled phase II trials. Hopefully that will show promising results and will spur interest from some big pharma companies to license it and take it to the next level, Phase III trials. Those are long, arduous, expensive processes. Then you have regulatory approvals, which is another matter onto itself. Research scientists can do the great work of discovery and proving out their research, it seems that bringing drugs to market is the work of pharmaceuticals.
11-03-2014, 08:57 AM   #546
baistuff
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So we automatically hate anything Pharma establishment related b/c they just want our money, and sit in their fancy board rooms laughing at us for spening money on their horrible drugs. But we encourage each other to give money and support to a lone ranger simply because he is anti establishment.

Seems to me this logic is based more on emotion and frustration than science and evidence. Just this idiot's opinion.
11-03-2014, 08:36 PM   #547
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You should always have some kind of scepticism I feel. When Janssens tried to extend their infliximab patents with years (all they got was 6 months), this wasn't in the interest of patients. http://www.ft.com/cms/s/2/3b389dae-b...#axzz3I3jFCeoA

When pharma claimed that etanercept was working for crohn's disease, only to find out years later through studies that etarnercept never worked for crohn's disease and many of the studies were manipulated. This wasn't in the interest of patients.

When doctors warned of the dangers of Tysabri, but pharma companies lobbied governments to use it anyway, and multiple people died in the studies. This wasn't in the interest of patients.

Primum non nocere, not harming the patient should always be the number 1 priority.

There are multiple cases where pharma has not been on our side. Yes we need better medication, and yes some people mean well, but let's not kid ourselves, at the end of the day this is about money, shareholders and profits.

The fact someone is willing to dedicate their life to help us, without any financial ties, he should get our support. There are other things people waste their money on, whether this vaccine is helpful or not, data will be gathered and we'll have a better understanding of crohn's disease regardless of the outcome.

And I say this as someone who has been tested for MAP twice, twice with negative results. Yet I still think crohn's disease patients deserve an answer to this question that has been debated for years.

All I can see is a very intelligent person who means well and is trying to help us. Crohn's disease is not a disease that gets a lot of media attention, our plight is often unheard. The few people who do mean well, and who go through extraordinary lengths to try to help us, and there is more than one, deserve our support and respect. They don't come around very often.

Last edited by kiny; 11-03-2014 at 09:06 PM.
11-03-2014, 09:04 PM   #548
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Kiny,

You make an excellent point. Without delving too much into psycho-social norms and the psychiatry behind human motivation, it would be entirely inaccurate to assume that the individuals running the pharmaceutical companies actually want to make people better. The problem with the United States (and why no "cure" for any modern disease will ever come from our nation) is the current bureaucracy that essentially ensures pure, academic, "non profit driven research," can only be done in a university setting, where doctors are at the mercy of massive foundations (like the CCFA, which is a travesty of a foundation...funding massive studies into Remicade and can't even spare $15k for Dr. Taylor) to fund their research. Essentially, big pharma, through partnerships with foundations and an elaborate game of smoke and mirrors, assumes indirect control over the research being done.

I am HUGELY skeptical of these firms, as you can tell, but nothing's gonna come out of the US. Lean on systems where the actual incentive is to find a cure (read: single payor system) where the government drives incentives for a cure because it's paying for it (Canada: Qu Bio, Israel: RedHill Bio, Dr. JHT, UK)
11-03-2014, 09:29 PM   #549
mf15
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Perhaps big pharma knows exactly what they are doing with biologics,if this testing is meaningful.
Killing MAP. One way or the other.
Don't know how this one slipped out it is a 2010 poster.
Old Mike
http://www.pulsus.com/cddw2010/abs/114.htm

Believe I have also read that specifically Remicade kills MAP infected macrophages, but will need to hunt that down again.
I have also been tracking papers that basically indicate that since 1942 just about all the IBD drugs except perhaps for pred control MAP,at least in culture or test tubes. So at the time they really did not know,but perhaps now they do.

Last edited by mf15; 11-04-2014 at 07:21 PM.
11-05-2014, 05:10 PM   #550
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The paper with the results of the clinical trial in cattle has been published. Tim Bull is Prof Hermon-Taylor's collaborator at St. George's in London.

Immunity, safety and protection of an Adenovirus 5 prime - modified Vaccinia virus Ankara boost subunit vaccine against Mycobacterium avium subspecies paratuberculosis infection in calves

http://www.veterinaryresearch.org/co...1/112/abstract
11-17-2014, 02:02 PM   #551
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Hi, by the supporters of the theory MAP's as the origin of CD how can explain the intermittent outbreaks of Crohn's disease? An infectious disease can cause these symptoms intermittently? jonhe's disease there are periods of activity and periods of remission and inflammation?
11-17-2014, 06:33 PM   #552
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Hi, by the supporters of the theory MAP's as the origin of CD how can explain the intermittent outbreaks of Crohn's disease? An infectious disease can cause these symptoms intermittently? jonhe's disease there are periods of activity and periods of remission and inflammation?
That's a good question, I think the difference being as humans we are able to seek help when we feel sick and therefore usually have the intervention of medicine to get into remission, lots of this medicine actually has anti map functionality.
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-Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
11-17-2014, 07:08 PM   #553
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That's a good question, I think the difference being as humans we are able to seek help when we feel sick and therefore usually have the intervention of medicine to get into remission, lots of this medicine actually has anti map functionality.
What about spontaneous remission?
11-17-2014, 07:31 PM   #554
baistuff
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Johne's does not cause fistulas, fissures, and fibrostenosing disease. Cattle have 4 stomachs and chew their cud and are mostly herbivores.

minor differences only I'm sure.
11-17-2014, 08:04 PM   #555
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What about spontaneous remission?
Not sure about spontaneous remission, Not all cases of crohn's are caused by MAP, but at least some are, all you need for a diagnosis is idiopathic patchy inflammation through the intestines, some people have gone inro sustained remission from fmt, some have gone into sustained remission (histological) from the ssi vaccine, each have different modalities to how they work.. But the point I'm trying to make is there's definitely different underlying causes for crohns, it's an umbrella term. IMHO AIEC and MAP are two definitive culprits and I absolutely believe CD is pathogenic...
11-17-2014, 08:29 PM   #556
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So with the 70k now raised does this mean the MAP diagnostic test will definitely be made? What is the timetable for this to be done?
11-18-2014, 08:00 AM   #557
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Yes I definitely want to know more about this. I felt really happy when I've read the most recent articles, however I'm trying to not get my hopes up too high. I know this needs a lot of funding.....and I don't know if you lot think this will be hopeless....but recently there's been the ice bucket challenges and the no make up selfies to raise awareness and money for a particular cause. The ice bucket challenge in particular was great because it wasn't a 'mainstream' disease if you get me, and yet it raised such a lot of money and awareness. What does everyone think if we could get something going like this on Facebook and Twitter to raise awareness and money, along with informing everyone that a cure might not be far off if we just can get the funding! I was thinking of something like ..... #getyourbellyout and then post a photo of your belly (whether you've got a bag, whether you're bloated, whether you've got scars, show everything with pride!) and then tag your family and friends to do the same and donate to the charity. I'm sure they would show their support and before long it would pass along the line. What do you all think? Xxx
11-18-2014, 12:33 PM   #558
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Daytripper, please visit: https://www.facebook.com/crohnsmapvaccine and https://www.facebook.com/groups/crohnsvaccine/

We were just about to start a campaign like getyourbellyout in March but the original UK based campaign supporting CCUK launched it just slightly before us. So we missed that train and didn't want to "copy" the idea.

If anybody have any ideas how to get more publicity for this please send your ideas also to the CMV page.
11-18-2014, 02:16 PM   #559
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Thanks for that Malgrave. I have just messaged them with the idea, so watch this space
11-18-2014, 04:52 PM   #560
Mattie
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July 2014 paper from Dr Borody re MAP

http://www.futuremedicine.com/doi/pdf/10.2217/fmb.14.52
11-19-2014, 05:38 AM   #561
Crohn2357
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Thank you very much.
●Targeting MAP using antibiotics
MAP has fulfilled Koch’s postulates as the cause
of CD[12], a set criteria used to prove causality of
a disease by a microorganism. As such anti-MAP
treatment is increasingly prescribed as a therapy
for CD using a combination of antibiotics that
targets MAP and has been shown to be quite
effective[13]. To prevent development of resist
-ance during long term therapy a combination of
antibiotics is required to target the bacterium at
all stages of the life cycle including reproduction
and dormancy. A randomized controlled trial
in CD using such a combination is currently in
progress and this could prove the effectiveness
of a therapy that targets the MAP organism
[14].
Authors refer to this trial:
http://www.clinicaltrials.gov/show/NCT01951326

Drug: RHB-104
95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine
5 RHB-104 capsules administered orally BID

I've used clarithromycin 500mg twice a day for 10 days. Used it for intestinal infection. Along with other side effects, psychological side effects were unbearable.

I don't have any experience with the other antibiotics but I'm deeply concerned about long term use of RHB-104.
-------------------------------------------
Some links on natural inhibitors:
http://www.ncbi.nlm.nih.gov/pubmed/18676709
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2233768/
http://www.plosone.org/article/info%...l.pone.0029631

Last edited by Crohn2357; 11-19-2014 at 06:25 AM.
11-19-2014, 06:52 AM   #562
rollinstone
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Thank you very much.

Authors refer to this trial:
http://www.clinicaltrials.gov/show/NCT01951326

Drug: RHB-104
95 mg clarithromycin, 45 mg rifabutin, and 10 mg clofazimine
5 RHB-104 capsules administered orally BID

I've used clarithromycin 500mg twice a day for 10 days. Used it for intestinal infection. Along with other side effects, psychological side effects were unbearable.

I don't have any experience with the other antibiotics but I'm deeply concerned about long term use of RHB-104.
-------------------------------------------
Some links on natural inhibitors:
http://www.ncbi.nlm.nih.gov/pubmed/18676709
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2233768/
http://www.plosone.org/article/info%...l.pone.0029631
What psychological side effects were you having if you don't mind me asking? I thought most people tolerated the therapy well. At least everyone iv spoken to has
11-19-2014, 07:00 AM   #563
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What psychological side effects were you having if you don't mind me asking?
I'd keep it with me. I must say the effects may vary for each person.
Here is a link about side effects:
http://www.drugs.com/sfx/clarithromy...e-effects.html
11-19-2014, 08:31 AM   #564
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Wow some of those sound really heavy
11-26-2014, 01:11 PM   #565
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http://crohnsmapvaccine.com/first-milestone/
12-01-2014, 06:46 AM   #566
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It would be nice if someone start a nice topic about the vaccine on places like reddit. I saw a topic about lyme disease vaccine on reddit today. It is highly upvoted.
There are these topics:
http://www.reddit.com/r/CrohnsDiseas...bout_treating/
http://www.reddit.com/r/CrohnsDiseas...ease_in_sight/
http://www.reddit.com/r/CrohnsDiseas...g_this_is_the/
But a topic more worthy of attention maybe can reach high votes and help raising awareness. Just an idea.
12-02-2014, 04:00 PM   #567
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In any case, funding a 2.6 million dollar vaccine to determine whether a multi-billion dollar disease can be cured seems like a viable option to me. This has become public enough that if it disappears, people will ask questions.

And to the point of the person who gave the novonordisk story - JHT doesn't give two s***s about money, at this point. He's dedicated 30 years of his life to this pursuit, he's pushing 80, and he still goes to work every day to figure this out.

Maybe he wants to pass some money on to his kids? Then again, I'm pretty d*** sure that Amy Hermon Taylor doesn't care either, unless her genuine empathy and compassion is all fake - and believe me, if it was, she would be selling people on the big screen as an actress, for the quality of the performance she can put on.

People deserve to have an answer to this godforsaken controversy, and whether it's a yes or a no, it will push the progress of Crohn's research ahead - because if no, people can stop whining about whether or not it cures the disease.
12-02-2014, 05:36 PM   #568
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Excellent Villivagabond!
12-02-2014, 06:34 PM   #569
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Well said.
12-03-2014, 07:10 PM   #570
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Sorry if itīs a repost

http://www.nature.com/nature/journal...ture11582.html
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