idiopathic thrombocytopenic purpura

[Jo]

A friend wrote to me about his grandson who has :

idiopathic thrombocytopenic purpura which is basically the immune system destroying red blood cells for no know reason.

 
Sounds just like RA to me, different location … same disease, possibly different mycoplasma variant, but RA has a couple of different ones of those as well.
 
So, my question to anyone who might know, or be able to find, is there an AP program of some sort floating around there, that I can tell him about?
 

[richie]

Hi
There is no AP program –this is a serious blood disorder where the cause is only being guessed at —
richie

[Jo]

[user=16]richie[/user] wrote:

Hi
There is no AP program –this is a serious blood disorder where the cause is only being guessed at —
richie

Well actually there is an AP program.  It just happens to be in Japan, and they say it cures, but I can only access the extracts and not the details.

There is also a major AP prgram, double blind test currently going on in Thialand of all places, which I found out after posting the request.  I don't think they can afford to go to Thialand for the program.  Again, it doesn't list any details of the program, except that antibiotics are used.

I was hoping that someone might have some information or know about where to access it.  I need an AP program that I can tell him about, vague reports of things happening in Asia does not help here in The States.

 

[richie]

Hi
I read that also –its a far cry from an established program —there are vague references to a connection to   H- pylori  –and some evidence that treating with an antibiotic increases the platelets —this is only for the folks where H-pylori is present –its a big stretch to call it a progra m– more like a shot in the dark –There is a big study kicking off in the US using rituximab which is a biologic —You might consider doing the folks a favor and refer it to this study –Its a straw but its doable
richie

[A Friend]

[user=465]Jo[/user] wrote:

A friend wrote to me about his grandson who has :
idiopathic thrombocytopenic purpura which is basically the immune system destroying red blood cells for no know reason.
 
Sounds just like RA to me, different location … same disease, possibly different mycoplasma variant, but RA has a couple of different ones of those as well.
 
So, my question to anyone who might know, or be able to find, is there an AP program of some sort floating around there, that I can tell him about?
 

Jo,

My husband was dx'd with ITP several years ago, but the hematologist decided he should not be treated with the common tx they use.  (That was good, as I remember that as being some sort of steroid… but not sure about my memory.)

Anyway, I did a lot of looking and studying.  Take this with a grain of salt, as again my memory tells me that the way I read that the platelets are counted didn't make sense to me, as I remember reading that if even if they were large (even if clumped together) this was counted as one by the scanner… or whatever…, and this seems to me would affect the count.  I'd already come to know about APS (antiphospholipid antibody syndrome, in which the blood can thicken in the presence of an infection); and I wondered if platelets could also be affected in a similar way from an infection as our blood cells.   

I accompanied my husband when he returned to his internist for an appt.  Having read about the two things above, I asked the internist if it was possible that the platelets clumping together could be making the count low.  He looked me straight in the eye and said he did not know (and this is a very respected internist.) 

So, this left me wondering if perhaps my husband may have a blood coagulation thing going on, perhaps caused by an infection of some kind, i.e. perhaps even fungal in origin (he is a sugar-o-holic). 

The following is an interesting piece (which I just found) about ITP possibly being caused by H pylori…. which (if the above is possibly true) then would make sense to me.  My spouse had ulcers off and on for years, so this does makes me wonder.

AF

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura
[edit] H. pylori eradication
Researchers in Japan (including Ryugo Sato, Oita University) and Italy (including Massimo Franchini, University of Verona) have found a possible connection between H. pylori (Helicobacter pylori) infection and ITP. Some patients given antibiotic treatment to eradicate the bacterial infection have had their platelet count increase dramatically.[citation needed][/suP]

[Jo]

[user=28]A Friend[/user] wrote:

Jo,

My husband was dx'd with ITP several years ago, but the hematologist decided he should not be treated with the common tx they use.  (That was good, as I remember that as being some sort of steroid… but not sure about my memory.)

Anyway, I did a lot of looking and studying.  Take this with a grain of salt, as again my memory tells me that the way I read that the platelets are counted didn't make sense to me, as I remember reading that if even if they were large (even if clumped together) this was counted as one by the scanner… or whatever…, and this seems to me would affect the count.  I'd already come to know about APS (antiphospholipid antibody syndrome, in which the blood can thicken in the presence of an infection); and I wondered if platelets could also be affected in a similar way from an infection as our blood cells.   

I accompanied my husband when he returned to his internist for an appt.  Having read about the two things above, I asked the internist if it was possible that the platelets clumping together could be making the count low.  He looked me straight in the eye and said he did not know (and this is a very respected internist.) 

So, this left me wondering if perhaps my husband may have a blood coagulation thing going on, perhaps caused by an infection of some kind, i.e. perhaps even fungal in origin (he is a sugar-o-holic). 

The following is an interesting piece (which I just found) about ITP possibly being caused by H pylori…. which (if the above is possibly true) then would make sense to me.  My spouse had ulcers off and on for years, so this does makes me wonder.

AF

http://en.wikipedia.org/wiki/Idiopathic_thrombocytopenic_purpura
[edit] H. pylori eradication
Researchers in Japan (including Ryugo Sato, Oita University) and Italy (including Massimo Franchini, University of Verona) have found a possible connection between H. pylori (Helicobacter pylori) infection and ITP. Some patients given antibiotic treatment to eradicate the bacterial infection have had their platelet count increase dramatically.[citation needed][/suP]

thanks for the information.

Maybe there is a standard treament for the Helicobacter pylon infection, that they can ask for “just in case”  can't hurt, might help. 

I found it interesting that 2/3rds of children “recover” and adults don't.  This child has not recovered in the initial time frame, perhaps in a longer period, but it won't hurt to try this and see what happens.

Does make one wonder doesn't it. 

[Jo]

[user=16]richie[/user] wrote:

Hi
I read that also –its a far cry from an established program —there are vague references to a connection to   H- pylori  –and some evidence that treating with an antibiotic increases the platelets —this is only for the folks where H-pylori is present –its a big stretch to call it a progra m– more like a shot in the dark –There is a big study kicking off in the US using rituximab which is a biologic —You might consider doing the folks a favor and refer it to this study –Its a straw but its doable
richie

Not bloody likely, not from me anyway.  Just like the biologicals for RA, this treatment can harm, a great deal in fact.  If it is indeed a bacteria or mycoplasma infection, inhibiting the immune sytem would allow them total access to the childs entire body. A criminal offense in my book.

Treat the symptoms, kill the patient.

[John McDonald]

Jo – Just how open are your friends to exploring? If one treatment is steroids and another is AP then it certainly could be a candidate. I would suggest an experiment.

The MP is a pretty aggressive version of AP. The Benicar seems to make a big difference to the protocol. So if your friends prefer a little testing then have them try the 1,25D / 25D ratio in blood serum. But the real interesting part would be to experiment with a therapeutic probe in which the patient tries about a week of the MP and then stops and assesses.  There isn't usually much risk in a quick trial like that and quite a bit of information to be gained.  What sort of information? Well when my wife Cricket tried some of my doxy to see if she would get an asthma herx, she didn't, get an asthma herx that is. She got a painful, bi-lateral joint herx in her fingers every other day. She walked about in awe for a couple weeks peering at her hands outstreched in front of her. It was months and months before she got an asthma herx (and utlimately cleared both) first on AP and later on MP. But having just seen me at work with AP for my RA the joint herx was persuasive to her. She started AP in earnest and later followed me to the MP. What might your friend learn? Who knows from here, but a short therapeutic probe isn't likely to permanently hurt the boy and if he has a profusion of CWD bacteria their presence are likely to be revealed as a herx of some sort.

My guess is that this is much too bold a step for a grandson of a friend of a friend. So I write generally of the idea.

-john

[Jo]

[user=3]John McDonald[/user] wrote:

Jo – Just how open are your friends to exploring? If one treatment is steroids and another is AP then it certainly could be a candidate. I would suggest an experiment.

The MP is a pretty aggressive version of AP. The Benicar seems to make a big difference to the protocol. So if your friends prefer a little testing then have them try the 1,25D / 25D ratio in blood serum. But the real interesting part would be to experiment with a therapeutic probe in which the patient tries about a week of the MP and then stops and assesses.  There isn't usually much risk in a quick trial like that and quite a bit of information to be gained.  What sort of information? Well when my wife Cricket tried some of my doxy to see if she would get an asthma herx, she didn't, get an asthma herx that is. She got a painful, bi-lateral joint herx in her fingers every other day. She walked about in awe for a couple weeks peering at her hands outstreched in front of her. It was months and months before she got an asthma herx (and utlimately cleared both) first on AP and later on MP. But having just seen me at work with AP for my RA the joint herx was persuasive to her. She started AP in earnest and later followed me to the MP. What might your friend learn? Who knows from here, but a short therapeutic probe isn't likely to permanently hurt the boy and if he has a profusion of CWD bacteria their presence are likely to be revealed as a herx of some sort.

My guess is that this is much too bold a step for a grandson of a friend of a friend. So I write generally of the idea.

-john

Sounds fasinating, and I don't see any reason why a child should not be tested on AP. However, MP and it's Vit D restrictions is not safe for a child, the reduced Vit D has been proven (not thru the MP, But thru other causes) to cause developmental harm.    I couldn't make the recommendation to someone who I don't know would definately follow the rules and keep it short term. 

I love your story, I had heard that Asthma and other allergies might have been caused by mycoplasm, and that there was a doctor who prescribed Doxy for kids with Asthma and it cured them. This is just one more proof that the possibility should be considered and tested for. If not professionally, then privately between the parents and doctor and child.

I strongly believe that if it doesn't do harm, it should be tried first, before something that could do harm is considered.

 

[John McDonald]

Vit D restrictions is not safe for a child

Jo – the serum half life of dietary D is around 2 months. I am speaking of a 1-week probe. No way the kid could get their D down in that amount of time. It is a non-issue until or unless they want pursue the full protocol.

I am a bit dense about medicine and I still can't get it through my head that the benefits of D are proven. It is a steroid. How can taking mega-doses of steroids constitute an un-mitigated good? This isn't some chemical that is missing from out diet. We get it in sunshine, egg-yolks, fish and mushrooms and did I mention sunshine?

From Wikipedia: http://en.wikipedia.org/wiki/Vitamin_D

Chemically, the various forms of vitamin D are secosteroids; i.e., broken-open steroids.

Vitamin D regulates the expression of genes associated with cancers and autoimmune disease by controlling the activation of the vitamin D receptor (VDR), a type 1 nuclear receptor and DNA transcription factor.[6][/suP] Research has indicated that vitamin D deficiency is linked to colon cancer and more recently, to breast cancer.

 

Again I am suspicious about consuming huge quantities of a steroid errantly listed as a vitamin, especially since I can allegedly make what I need. Moreover the skin color and working indoors argument seems specious when you consider that many mammals work in the dark of night and do just fine. Something seems oddly errant about those arguments. Then as so often happens in so-called “evidence-based medicine”, researchers see a correlation between unusually low dietary D and say colon cancer as noted in wikipedia above and they somehow conclude that the low D led to the cancer, but they never, ever question whether the cancer led to the low D. And finally most of these studies measure the serum levels of dietary D, 25D, which is allegedly the firewood, and they don't measure the more difficult 1,25D which is allegedly the real thing, the active version. Well it costs more to measure and it is a more fragile molecule with only a 6 hour half-life instead of the dietary D 2 month half-life. But it is the real deal, the real D, the one that is supposedly active. TM suggests that low dietary D in these cases is due to rapid upconversion due to disease processes and indeed, I have a paper which describes an overabundance of 1,25D measured in synovial fluid (in joints) of rheumatic patients. So it may well be that low D does indeed indicate disease, may be likely in fact, but is rather the result than the cause.

Finally, I have scrupulously avoided dietary D for 3 years now and during this little vacation of mine I could say “never better”. Not much of a statistical sample but it is one that I appreciate.

So, I don't know. I guess I am just thick about these things, or maybe I am from Missouri.

I don't know if Marshall is right about D either. I don't have the background to prove or disprove it. But I find his arguments against D supplementation to be telling. So it seems prudent, when in doubt, to avoid the stuff and instead to substitute a walk in the daylight.

john

[Jo]

[user=3]John McDonald[/user] wrote:

Vit D restrictions is not safe for a child

Jo – the serum half life of dietary D is around 2 months. I am speaking of a 1-week probe. No way the kid could get their D down in that amount of time. It is a non-issue until or unless they want pursue the full protocol.

I am a bit dense about medicine and I still can't get it through my head that the benefits of D are proven. It is a steroid. How can taking mega-doses of steroids constitute an un-mitigated good? This isn't some chemical that is missing from out diet. We get it in sunshine, egg-yolks, fish and mushrooms and did I mention sunshine?

From Wikipedia: http://en.wikipedia.org/wiki/Vitamin_D

Chemically, the various forms of vitamin D are secosteroids; i.e., broken-open steroids.

Vitamin D regulates the expression of genes associated with cancers and autoimmune disease by controlling the activation of the vitamin D receptor (VDR), a type 1 nuclear receptor and DNA transcription factor.[6][/suP] Research has indicated that vitamin D deficiency is linked to colon cancer and more recently, to breast cancer.

 

Again I am suspicious about consuming huge quantities of a steroid errantly listed as a vitamin, especially since I can allegedly make what I need. Moreover the skin color and working indoors argument seems specious when you consider that many mammals work in the dark of night and do just fine. Something seems oddly errant about those arguments. Then as so often happens in so-called “evidence-based medicine”, researchers see a correlation between unusually low dietary D and say colon cancer as noted in wikipedia above and they somehow conclude that the low D led to the cancer, but they never, ever question whether the cancer led to the low D. And finally most of these studies measure the serum levels of dietary D, 25D, which is allegedly the firewood, and they don't measure the more difficult 1,25D which is allegedly the real thing, the active version. Well it costs more to measure and it is a more fragile molecule with only a 6 hour half-life instead of the dietary D 2 month half-life. But it is the real deal, the real D, the one that is supposedly active. TM suggests that low dietary D in these cases is due to rapid upconversion due to disease processes and indeed, I have a paper which describes an overabundance of 1,25D measured in synovial fluid (in joints) of rheumatic patients. So it may well be that low D does indeed indicate disease, may be likely in fact, but is rather the result than the cause.

Finally, I have scrupulously avoided dietary D for 3 years now and during this little vacation of mine I could say “never better”. Not much of a statistical sample but it is one that I appreciate.

So, I don't know. I guess I am just thick about these things, or maybe I am from Missouri.

I don't know if Marshall is right about D either. I don't have the background to prove or disprove it. But I find his arguments against D supplementation to be telling. So it seems prudent, when in doubt, to avoid the stuff and instead to substitute a walk in the daylight.

john

We seem to be mixing up our apples and oranges in trying to talk to each other here.

1st. Your comment about taking mega doses of vit D, is exactly why I won't recomment the MP protocol for a child.  Mega doses of Vit D are very dangerious, why do people do that, because they think more is better and they are wrong.  So, if the mother in this example doesn't keep it to a 1 week trial, thinks that longer is better, then she damages her child.  Same attitude that causes someone to take mega doses could cause her to not limit the protocol.

Rationally, one week can't hurt, but people aren't rational and since I can't know if she will stick to the one week, or the doctor won't stick to the one week, then how can I recommend it, for a child.  For an adult, hey I warned you take your chances, but to me, a child is different.

Any particular reason you aren't satisfied with me recommending 1 week of the AP program instead?

2nd. Mega dozes of Vit D can do more harm than low Vit D.  Why take vit D at all?

I agree with you, it's free,  an hour or so of indirect sunlight every day and you get all you need, and you never get over doses of it  If you have to supplement, then you either aren't getting your hour a day, or there is something wrong inside you.  If there is something wrong inside you, why on earth cover it up by taking dietary vit D?  Find it and fix it, don't cover it up.

3rd. Vit difencies are different between adults and developing children.  Things that are minor for adults, can developmentally damage a child for life.

4th. My husbands AP doctor prescribed it, though we didn't fill it. Dr Mercola recommends it. Many articles reference it's antiinflammation abilities, The  Why Arthritis book also recommends it. 

Though Why Arthritis also recommends Vit A for the same reason, and we now know that 150% of the recommended daily dose of vit A causes osteoporosis in adults 25 and over. So I definately wouldn't recommend Vit A supplements, nor food containing Vit A,  for adults, but I would for children.

5th. The MP board is not knowledgable nor sympathetic to the unique issues of children.  While researching it, there was a mother whose child was having many problems on the program.  They actually told her not to see a doctor because the doctor would not be familiar with the protocol and it's needs.   Her last post said she couldn't take it, she was taking her child to the doctor and would write back what they said and recommended.    Not only did she never write back, but her entire history of posts vanished within hours, like she never existed.  

So no, I won't recommend MP for a child, only for adults.  I know it works for them, I've seen the things people on the program write.  But I wouldn't put a child at risk with it.

[John McDonald]

Well perhaps I misunderstood you respecting #1. I'm pretty sure that I still misunderstand you on the vitamin D point. I got the passion but missed the message I think.

The other points I won't contest.

My wife did a probe with AP, no benicar, and in her case it was very effective.  But the reason I recommend the probe with Benicar is because in my case in particular and confirmed by many others whom I have watched, a short probe with benicar is much more likely to produce a recognizeable herx than is a short probe with Minocycline alone. Many people on AP don't recognize a herx as such, or perhaps not until it is mostly over. That applied to me as well. It is all flipped over when you add Benicar. Usually the herx is very easy to identify as such, highly localized in time with respect to the QOD dose of antibiotic. With the Benicar it is only a tiny number of people who do not notice an immediate herx. So if I were only going to risk a week I would feel much more confident about producing an identifiable herx with the Benicar + minocycline combination. Moreover, amongst the AP members there is wide variation in dosing amounts and frequency, a mass of new variables and so another way to fail to produce a herx.

What if they failed to produce a herx on a short interval of AP? Would they be inclined to then try it for the required year or more interval? And wheras some diseases seem very susceptible to AP such as RA, others seem to need a more aggressive antibiotic attack to yield.  Which variety is ITP?

Moreover, if you examine the safety insert for Benicar in all of its detail you will find that it is an amazingly benign drug. I'm sure that is related to it being so specific to nuclear receptors. It just doesn't affect much else and barely affects its target receptor. You can pretty much eat a whole bottle of the stuff with no ill effect other than a drop of about 10 mg of BP. So I am not concerned about the safety of Benicar or about the safety of Minocycline nor the combination, not even in children.

I have heard a pretty convoluted explanation of a herx that did not involve microbial destruction but the really simple explanation is the one that Jarisch and Herxheimer described. So if you get a herx you have good evidence that you have a microbial infection.

It hasn't been my experience that moms and dads are careless with the health care of their children on AP or MP. Usually the mom is a lioness of probing questions and conservative care. My observation is that they want information, as much as they can get, so they can make their own choice. I would never decline to inform them for fear that they would be stupid.

In truth though what I expect would happen is what I have seen many, many times before. When I describe Marshall's model and protocol in detail the potential patient is often very intrigued but usually prefers to start with AP, no benicar, and fence sitting with respect to D. But by then they have a very good idea about how the infectious model looks and what they might expect from an antibiotic treatment. One woman decided she would adopt the Marshall idea of 3 simultaneous antibiotics, “it just makes sense” she said, but skipped the Benicar.

I see it all.

 

john

 

[richie]

Hi
Problem is that ITP is a potential fatal disease –and without any really effective treatment –dont you feel that these folks  should be exposed to any and all lifelines including biologics –to withold  this information really doesnt do a service to them
richie

[Joe M]

More serious in adults than children.  From Mayo clinic website:

In children, idiopathic thrombocytopenic purpura usually runs its course without the need for treatment. About 80 percent of children with idiopathic thrombocytopenic purpura recover completely within six months. Even in those children who develop chronic ITP, complete recovery may still occur, even years later.

So with those odds, why do anything right away?  As a parent, I would hope it runs it course and if not then I would consider taking action.

[Jo]

[user=20]Joe M[/user] wrote:

More serious in adults than children.  From Mayo clinic website:

In children, idiopathic thrombocytopenic purpura usually runs its course without the need for treatment. About 80 percent of children with idiopathic thrombocytopenic purpura recover completely within six months. Even in those children who develop chronic ITP, complete recovery may still occur, even years later.

So with those odds, why do anything right away?  As a parent, I would hope it runs it course and if not then I would consider taking action.

I thought I had mentioned earlier, the child has not recovered in the initial time frame. I'm sorry if I forgot.  It's been going on for a year, the family is desperate.

I personally don't think that there is any harm at all in trying the AP program, but it needs to be the best antibiotic for this particular infection.  I had hoped that someone might know what that best antibiotic might be.

I am grateful to A Friend for suggesting a particular bacteria. My suggestion to the family was that they try intermitent Doxy with whatever the recommended antibiotic is for H Pilora in children. I also recommended that they talk to the doctor about stopping any immune suppresant medications that the child might be on, for the duration of the antibiotic trial.  I sent them the link for the Japanese treatment, and the Thialand Trial to present to the doctor.

Maybe he can get further information on them.

Now it's up to them to decide what they want to do.

[Author]

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