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Working for me
Posted: Fri Feb 14, 2003 5:01 am
I wanted to post the regimen that seems to be working for me, and although it's only been a few days the results have been remarkable. IMHO CPPS is triggered by a bug of some type coupled with a weakened immune system and perhaps a genetic susceptibility. Thus even though recent studies show no increase in bacteria in CPPS vs. controls it could be that the individuals with symptoms are affected by organisms that don't bother normals. Anyway this theory led to my current regimen. Before I outline it let me say that I've tried all of these components separately with modest success. I'm 46 and have had CPPS from 39-44, 2 years off then relapsed about a year ago.
I've been taking Levaquin for 2 weeks with 10% relief in symptoms but still pain in groin area, low back and testes with burning on urination and ejaculation. Of course workup was negative. Five days ago I decided to add everything I could think of that had helped me in the past. This included The Brocoli protocol, High dose antioxidants, vit. c, zinc, selenium, garlic and papain/bromelain. I also added juice plus which is a ground up fruit and veggie mix in a pill form (in regimen for it's high Quercetin content while I'm waiting on Prosta-Q order) and acidophilus. Also the NSAID Ansaid when needed for pain. Also continued the Levaquin.
Anyway the results have been a 50% reduction in symptoms overall and a 75% reduction in pain. I feel so much better I'm almost afraid to write about it in case I might jinx it. Now I know purist will say don't take more than 1 thing at a time because then you don't know what's working but I don't care. This is a devastating disease and as long as it's working I don't care about the reason.
So I will give periodic updates so we can see if this lasts or improves, but I feel my energy returning and maybe this will keep working for me.
Day # 5
Posted: Sat Feb 15, 2003 1:50 am
2/14/2003 A good day today though symptoms were a little worse than yesterday. So I took a singulair this am for some mild asthma symptoms and this always seems to help the CPPS. Since it's valentines day had some wine with dinner and took a vicodin after (which I seldom take) just to make sure there would be no pain. Also I'm taking cranberry tabs which I forgot to mention in my regimen yesterday. Even though not quite as good as yesterday if I had to live the rest of my life with these symptoms I would be happy. Overall improvement 50%.
Posted: Sun Feb 16, 2003 5:47 pm
2/16/2003 One week today on regime. 75% improved! Have started taking very hot baths every night. Basically I'm trying to incorporate anything from past experience that has helped. Also I've noticed that whenever I drink milk I get some increased symptoms. I love milk but will try to eliminate this as well. Another thought has been my allergies /asthma. Though I seldom take meds for this I've become aggressive with singulair or claritin thinking that I want the immune system at 100% and anything that may prevent that will be treated.
I also had been told I needed a root canal on a tooth and I've put that off for 6 months. But it's now scheduled next week. The tooth is infected and I don't want the burden on the immune system.
So 7 days and 75% improved. My only concern is that I'm on antibiotics, which I don't like. If not for that I'd be satisfied with my new quality of life. I'll probably stay on the Levaquin for a total of 6 weeks and then we'll see.
Posted: Wed Feb 19, 2003 1:17 am
Day 9. The good news is that the prostate is 80% improved. The bad news is that my tooth hurts. Ready for that root canal on Thursday. I'm curious if the root canal will improve the CPPS even more. My condition continues to improve in an up and down fashion. 3 steps forward 2 steps back but it's only been 9 days and I could easily live my life like this with no complaints. Had a massage last night and afterwards felt completely normal- NO PAIN. This morning a little pain but overall 80% improved. Also started stretching again several days ago and this helps. Also gave up exercise. To explain I am a fitness addict and even though the CPPS felt better when I exercised it felt worse afterward. I think that was just another stress on my immune system which needs to be at 100% to fight this disease. I've also found that I crave hi protein foods especially meat. Though I usually eat a very low fat diet I'm going with what my body is telling me. Maybe I need more protein/fat? So far so good.
Posted: Wed Feb 19, 2003 3:21 pm
Do you still have back pain? I find the back pain and burning feeling during the urination & ejaculation the most worse. When I sit I have a lot of low back pain. When I walk or lay down I don't feel any back pain. When I bow down I have a lot of more pain in my back then. I just ordered algonot plus I will give it a try.
Posted: Wed Feb 19, 2003 6:25 pm
Back pain is a big symptom with me.
Posted: Thu Feb 20, 2003 1:13 am
Day 10. Back pain is 95% gone. When it does flair up I find that a hot bath and stretching will totally relieve it. I had a massage 2 nights ago and I was 100% pain free after. The main symptom I have now is occaisional burning after sex or urination. Not all the time and not severe like before. Unfortunately I can't comment on exactly what is working for me since my philosophy is to do EVERTHING that I have learned from experience helps. I figure that the condition is multifactorial and needs several types of treatment ex antimicrobial, muscle relaxation, immune system strengthening, antiinflamatories etc... I will try to get organized and prepare a list of everthing I'm doing and maybe this will help. Bottom line is that this is day 10 and I feel great- not yet 100% but getting there. By the way restart the broccoli protocol again tomorrow after planned 3 day layoff. UGHH, hate that stuff!
Posted: Thu Feb 20, 2003 8:36 pm
Have you tried a very hot bath followed by a stretching routine? This really does help me with the back pain.
Posted: Sun Feb 23, 2003 11:27 pm
Today makes 2 weeks. I seem to have leveled off at 80% improved over the last 4 days. Had the root canal and though the tooth feels fine I noticed no improvement with the CPPS. Pain virtually gone. The symptoms that remain are burning after ejaculation but not after urination and a lowered energy level associated with occaisional urethral burning for no apparent reason. Now I would be OK with these symptoms but the big question is what do I do about the antibiotics. I've been on Levaquin almost 4 weeks and I don't know how much of the improvement is from the antibiotic. I'd hate to stop and loose all the gains I've made so I'll probably continue until the improvement stops progressing or until I feel symptom free. At some point I have to stop but I'm not ready yet. Doc is pretty much leaving it up to me as the original plan was for 6 weeks of antibiotics.
Posted: Tue Feb 25, 2003 3:42 am
Had a massage tonight and feel great(that's whole body massage, NOT prostate massage). Has anyone else noticed this helps? Usually only lasts about a day but well worth it.
Posted: Tue Feb 25, 2003 4:32 am
ddarcher wrote:Had a massage tonight and feel great(that's whole body massage, NOT prostate massage). Has anyone else noticed this helps? Usually only lasts about a day but well worth it.
Massages are supposed to get lymph fluids moving, so that may be the key, although one cannot discount the relaxing effect on the musculature. As far as the antibiotics go, without a cultured infection you have to start weighing pros and cons after a long course. You are probably aware by now of the Levaquin/Quinolone hate group here:
They have some pretty scary stories to tell.
Posted: Tue Feb 25, 2003 4:39 am
ddarcher wrote:Also I've noticed that whenever I drink milk I get some increased symptoms.
Milk products always have a mildy deleterious effect on my pelvis too. And numerous other men report similar.
I've become aggresive with singulair or clariten thinking that I want the immunee system at 100% and anything that may prevent that will be treated.
Substitute (titrate up from 10mg to 25mg daily) hydroxyzine (Vistaril) for the other antihists. if
you can stand the sleepiness (which usually dies down quite a bit as you adapt anyway).
Posted: Wed Feb 26, 2003 12:18 pm
Day 17. 85% improved.
Symptoms remaining include burning post ejaculation and a periodic tingle(no longer a burn) at various times for no apparent reason. To address some f/u posts: I am aware and certainly concerned about long term antibiotic use. But I will say that for me unlike many on this board, antibiotics have always helped my symptoms while I was taking them. Since the current regimen is comprised of all treatments that have worked in the past Levaquin is included. Now ofcourse this doesn't prove that it is the bug killing property that is giving the benefit. But I have about 2 more weeks of Levaquin and when I stop we'll see. Lately I have started drinking milk in small quantities without adverse effects. I love the stuff and really don't care for the substitutes. Milk has a large number of people with either allergies or sensitivities and I'm wondering why this adversely affects the prostate- any thoughts on this Mark? Also why did you suggest vistaril? Any anectodal reports that it helps more than other antihistamines? I think I'm going to try this at night to help me sleep. All these vitamins typically cause some insomnia.
Re: Day 17
Posted: Wed Feb 26, 2003 5:45 pm
ddarcher wrote:But I will say that for me unlike many on this board, antibiotics have always helped my symptoms while I was taking them.
No one will argue that their anti-inflammatory effects
don't help a percentage of men -- they do. The ticklish issue is whether the pros outweigh the cons. Quinolones are not benign drugs for many of us (e.g. gave me joint problems and frantic panic attacks). Then there is the question of antibiotic resistance.
I love milk and really don't care for the substitutes.
You've mentioned the love of milk twice now. You need to be aware that any food "love" or craving probably denotes food intolerance. This is confirmed in the immunologist Prof. Brostoff's book on the topic (see the book page
for a link). Unfortunately, the foods we most crave are usually the foods that are harming us. The craving is a result of the immune system's strong response to the food.
Milk has a large number of people with either allergies or sensitivities and I'm wondering why this adversely affects the prostate- any thoughts on this Mark?
Well, milk is one of the classic food allergens, along with wheat, eggs etc. This probably arises because we are usually first exposed to large quantitiies of milk (a soup of proteins and cow pus cells) before our immune systems are fully mature.
Also why did you suggest vistaril? Any anectodal reports that it helps more than other antihistamines?
Vistaril is the
antihistamine for disorders of the GU system. To quote a recent study
(one of several):
Hydroxyzine reduced carbachol-induced serotonin release from rat bladder in vitro through a mechanism which was unrelated to its H-1 receptor antagonistic properties. The ability of hydroxyzine to inhibit bladder mast cell activation by neurogenic stimuli along with its anticholinergic, anxiolytic and analgesic properties, may explain the clinical efficacy of this drug in reducing IC symptoms. Other, nonsedating, hydroxyzine analogues able to inhibit bladder mast cell activation may provide potentially new therapeutic approaches for IC.
I think I'm going to try this at night to help me sleep. All these vitamins typically cause some insomnia.
Vitamin C in large quantities causes insomnia, so I always take this vitamin in the morning, not evening.
Posted: Mon Mar 03, 2003 9:46 pm
Day 22, 90% improved. Still have waxing and waning of symptoms but slow steady improvement continues. Started working out again last week albeit at a low level. Will continue to update.