Official Desensitization plan Begins!

[Daveman]

Hi JP,

Those that say that desens. seems to be working need at least a year to get perceptible results. Even so, the improvement probably won't reach more than 50% to 60% in less than a couple of years.

So one has to be patient.

The results of desens. seem to be a judgement call, and a much more difficult call than say, results seen with niacin, in the sense that desens results are day by day, like watching someone grow up. You don't see the changes as easily. Unless you are a long lost uncle that comes back after 10 years and sees the big difference all at once.

With niacin you try it and feel the whole improvement all at once. The only way to do that with desens is go into coma for a year and do the treatments meantime. When you wake up in a year, you should feel the difference.

Perhaps another thing that complicates the evaluation of desens. is the fact that you are sick almost constantly while you take the injections. So how can you evaluate the benefit if you are in POIS from desens.? You would have to stop injections for a while, in which case you are going to start to feel better. ( like when you stop banging your head on the wall it feels better.) So your "relative view" of symptomology is pre-load.

I'm not saying it doesn't work. Just that it's very difficult to make an objective evaluation. There is also a huge desire that it will work complicating the judgement even more.

I think you've had trouble making the niacin and vitamin supplementation work. Niacin is difficult to take "correctly",and if it isn't taken "correctly" ("correctly" may be one way for some and another way for others), niacinamide is much less complicated. It can be take daily, and even IF it doesn't reduce symptoms, there is a growing consensus that it is still protecting your system from further continuous damage from POIS.

Niacinamide can also be taken WHILE doing the desens program! So they are not mutually exclusive.

See threads on niacinamide..... (search niacinamide on this forum).

[jotape_chile]

Dear Dave,

As we spoke, Niacin did not work for me. I am now trying the "Kurtosis" method and hoping it will work in the future.
My main concern is with the desensitization: I hate "knowing" I will feel awful after each shot. It kills my morale.
If I could only get some relief during the treatment it would be a great step forward.

I will try to find niacimide thru Ebay and give it a try taking it every day.

Best regards,

Juan Pablo

JP

[Daveman]

I hope daily niacinamide helps to relieve symptoms, read the information of course, it would be useful to take the l-methionine once or twice a week to help the liver process the niacinamide. BUT the important part is that the niacinamide, even though it MAY not relieve symptoms is still helping you protect your system, perhaps even give your system a chance to play catch up and get to where you are within range to be symptomatically  benefited by the treatment.

Unfortunately we have POIS, and so far there is no guarantee that we can prevent the symptoms in all.

You are our ideal candidate. If we can fix you we can fix everybody!! But really, you are not alone. We need to concentrate on those of you for which nothing has worked to date. We will find the answer there.

[Egordon]

Jimmy,

Here's what I did to get my doctors to fully investigate the disease and begin treating me. You want the allergy test, so if it doesn't work on the doctor you're seeing, get a referral to someone else.

Print out copies of the following:  each of Waldinger's papers and any of the other major peer-reviewed POIS papers, as well as two, relatively brief newspaper articles colloquially describing the disease (I used the La times and Reuters -- use whatever paper is reputable where you live). Take these materials to your doctor and show him the newspaper articles first. Then give him the papers and let him know what they're about (the autoimmune theory and the desensitization process). After that, describe your symptoms.

Doing this is a major help, as it lends credibility to a disease a lot of medical practitioners are skeptical of.

[Egordon]

Juan Pablo,

Have you tried using non-steroidal antiinflammatories? I've been getting the desens for a few months and have used them after just about every shot. They eliminate your symptoms within the hour! I take Celebrex because I have asthma, but I used to take indomethacin and it worked well too.

(It's crazy to me that NSAIDs aren't brought up more often on this board. I'll never understand why our posters are so enthusiastic about the litanies of holistic and untested remedies, and so reluctant to try things developed by medical science and proven to reduce inflammation. Alternative explanations are exciting, no doubt, but these drugs just plain work for people with our condition.)

[Snowblind]

I have tried NSAIDs after O and they work rather well but i do not wish to take them to often because they keep me from gaining muscles at the gym . I am going to try Cissus for the inflammation caused by O:s and see if it works. Has anyone else tried Cissus?

Egordon: are u shore that the NSAIDs does not interact with the desensitisation process? What if it takes away whatever the body is going to get used to?

I am wondering if a vasectomy would be effective in treating POIS? Does anyone else have thoughts on this? I am thinking if the sperm is what we are allergic to wouldn't that help? I realise that maby not everyone wants to do that but people who already have children and do not wish to get more might consider it if it would work. Or is it the other fluid that comes out (do not know what it is called in english) that most of us get the inflammatory reaction from?

[Vandemolen]

Great that Niacin helps some of us. But for me Niacin helps me ZERO.
Because of the desens I have 70 % less symptoms. Offcourse I want to be 100 % cured. But if I have to choose between ZERO relief or 70 % less symptoms the choice is easy.

[jotape_chile]

Dear Vande,

What I'm worried the most is the fact that I KNOW I will be on POIS after every shot.
I desperately need something that reduces my symptoms that day and the day after. That way my life quality would improve a lot.

What do you friends recommend? Until now nothing has worked for me (ej: niacin)

Juan Pablo
JP

[Daveman]

JP,

I know this doesn't help, but niacin worked once for you quite well. Very strange! Maybe someone can figure that one out..(Kurtosis?).

I've worked with JP to try to get niacin to work again but no luck, we have tried a lot of things, even changing brands etc.

JP has a short (2 days) but quite intense POIS. Mostly cognitive right JP?

As I say, there must be a special key to POIS hidden away in JP and others like him, that if we can unlock, maybe we solve something big for everybody!!

[jotape_chile]

Daveman,

My POIS is mainly physical: chills, itching, fatigue, stomachache, rashes, dry skin.
It lasts the rest of the day after an O + the next day.

I'm really getting desperate with this. I need a solution at least for the symptoms, so I can continue my treatment.
I'm kind of loosing my faith already... sorry.

Juan Pablo
JP

[Vandemolen]

JP, today I talked with my doctor about your desens scheme. He said it is normal that you have that symptoms after every shot. There is a gap of a few months after every injection. And you are going very fast. So your body gets a blow after every injection. If you slow down and take a shot after 6 weeks your body can take it. Then you will get less symptoms. The first scheme of dr. Waldinger is published. So your doctor has to read that first. The only thing that changed now is that the max dillution is 10/1. Today I had 8/1.

[jotape_chile]

Dear Vande,

the gaps between the shots are filled with shots with the same concentration.
I have not had a shot during the last month, because I had to cancel my appointment.

Fortunately, using the original "Kurtosis method" I have had a relief after a night of O's. I estimate the rlief in 50%, and I'm hoping is no one hit wonder (as Niacin was).
I am yet to get the details from my doctor on the details of my desenz process, but I will post them as soon I have them.

Best regards my friends,

JP

[Daveman]

Dear Vande,

the gaps between the shots are filled with shots with the same concentration.
I have not had a shot during the last month, because I had to cancel my appointment.

Fortunately, using the original "Kurtosis method" I have had a relief after a night of O's. I estimate the rlief in 50%, and I'm hoping is no one hit wonder (as Niacin was).
I am yet to get the details from my doctor on the details of my desenz process, but I will post them as soon I have them.

Best regards my friends,

JP

WOW, I am so happy for you. Let's hope that your relief is more steady.
Even with the great benefit that niacin gives me I can't do a whole night of orgasms, or even more than one!!

So 50% with several in a night is fantastic!!

Good luck! And WOW.

[demografx]

 Please Click H E R E

[jotape_chile]

Dear Daveman & Vande,

Today, again, I'm on this strange lowered POIS.
This week I've had three O's and the feeling has been quite different since following the Kurtosis method.
Even my mood is better... for example: yesterday I had sex with my current partner and then I went to a small party 
This would have been impossible before. I even had a good time.

Today I'm kind of exhausted, but not feeling bad. Only tired... this week has been very intensive in sex.

I'm very enthusiastic after this week... hope things continue improving. I'm on a normal 50% symptoms, feeling some heat waves and tiredness, but nothing compard to other POIS days before undergoing Kurtosis.

I will keep you updated. I hope that this improves during my desenz treatment.

Bes regards,

JP

[Vandemolen]

That's great JP! I hope that from now on things only get better for you. Good luck!

[Hoping]

Dear Daveman & Vande,

Today, again, I'm on this strange lowered POIS.
This week I've had three O's and the feeling has been quite different since following the Kurtosis method.
Even my mood is better... for example: yesterday I had sex with my current partner and then I went to a small party 
This would have been impossible before. I even had a good time.

Today I'm kind of exhausted, but not feeling bad. Only tired... this week has been very intensive in sex.

I'm very enthusiastic after this week... hope things continue improving. I'm on a normal 50% symptoms, feeling some heat waves and tiredness, but nothing compard to other POIS days before undergoing Kurtosis.

I will keep you updated. I hope that this improves during my desenz treatment.

Bes regards,

JP

That's great JP! Hearing stories like this really give us a lot of hope. Keep reporting back.

[jotape_chile]

JOTAPE_CHILE          
Desenzitization treatment evolution         
         
DATE         CONCENTRATION   EFFECT   
         
29-06-2011              Prick test +   
13-07-2011   1/40,000   No POIS   
27-07-2011   1/40,000   No POIS   
17-08-2011   1/20,000   No POIS   
07-09-2011   1/20,000   No POIS   
24-09-2011   1/10,000   POIS   
05-10-2011   1/10,000   POIS   
19-10-2011   1/10,000   POIS   
02-11-2011   1/10,000   POIS   
23-11-2011   1/10,000   POIS   
14-12-2011   1/10,000   POIS   
11-01-2012   1/5,000   POIS   
SUSPENDED         
11-06-2012   1/5,000   POIS   
25-06-2012   1/2,500   POIS   
03-07-2012   1/1,250   POIS   
23-07-2012   1/625   POIS   
23-08-2012   1/315   POIS   (Niacin)
03-09-2012   1/105   POIS   (Niacin)
01-10-2012   1/50           POIS   (Niacin)
14-11-2012   1/25           POIS - Massive fatigue   (Kurtosis)

Please comment.

JP

[Daveman]

Thanks for the numbers JP. Sounds pretty exhausting.

How are you doing in between sessions?

Sounds like the Kurtosis regime started to produce fatigue? As I understand this can be an initial consequence as the system readjusts.
 Is it still helping the POIS any?

Do you take methionine to help counteract the B-Complex load etc.?

Your concentrations are getting pretty strong. Do you think that if you backed down to like 1/5000 you would still get POIS. Not that I'm suggesting it, but one might assume that if you are existing at 1/25, the 1/5000 would be a piece of cake now.

[Vandemolen]

JP, I see that you still have problems with the injections. My advice (I am no doctor!) is to ask your doctor to slow down the desens. I used to have 1 injection in 5 weeks. Now the dillution is low, I have an injection once in 7 weeks. So maybe try to have an injection once a month. And not twice a month.

Now you are at 1/25 you should feel better. I hope you do.