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Anybody Here Ever Been on Dialysis?

Muscle I have just heard back from the Brit IFBB pro. He said he will be happy to help you so thats some good news atleast.

I will email you his details allright
so you give him my name/ref and speak to him directly and go from there. He is a very knowldege smart guy and will be of great assert to you in battling this.


Sent from my ONE E1003 using Professional Muscle mobile app
 
muscle96ss- you seem pretty knowledgeable about your situation. Had you been getting labs consistently over the last 5-10 years? If so, what was your "normal" GFR during that time?
 
Damn, sorry to hear this, my dear friend.

However, I wouldn't suspect the Benicar.

From what you've written, the kidneys were probably already taxed and the upper respiratory tract infection triggered what is called Berger's disease. However, that is only guessing as long as the biopsy results are not available.

You may be right. A couple of years ago I had a respiratory virus that floored me and I had a fever of around 103 for an entire week. The cough lasted around 6-8 weeks in total. I was told by someone who had it that once it goes away you keep getting it back. And over the last couple of years it would come back to a lesser and lesser degree every few months. I hadn't had any issues for the last 4-5 months when in march it came back again but stronger. I am still coughing shit up in the morning. And my bloodwork had been stable for around 5 months and I am doing nothing different that would have dropped my GFR from 15 to 8 in a matter of 5 weeks.
 
muscle96ss- you seem pretty knowledgeable about your situation. Had you been getting labs consistently over the last 5-10 years? If so, what was your "normal" GFR during that time?

Yes, I have always gotten labs done often. Unfortunately when I got my labs done in October, I had not done any in about 16 months(had been meaning to but kept getting sidetracked with life). If I recall correctly, my GFR was around 60 then. Its been around 60 for many years.
 
One other thing to add about the cause of my disease. My own hypothesis of what happened is that it is related to the BP med Benicar.

I began taking Benicar at 20mg and then 40mg a year or two ago. I have had IBS off and on for years, so I didn't realize that the Benicar was the cause; but from the time I started the Benicar I never had a solid poop. In addition, I was always so fricking thirsty where I would just chug water.

Last summer it got to the point where when I would drink water I would have to poop and would poop out the water I just drank it seemed like. I was pooping/diarrhea anywhere from 4 to 10 times a day. When I was back east on vacation with family, I finally decided that I was going to see a gastroenterologist when I got back. Ironically, when I got back I switched from Benicar to Telmisartan and have had nothing but solid poops since and back to a normal non-IBS schedule. So there was no need to follow through with the gastro.

I did some research and it turns out that Benicar can cause a spruce-like enteropathy that mimics Celiac disease. So I am wondering if that had something to do with this whole mess. My guess is that if I was discharging all the water I was drinking that quickly, then my kidneys were probably severely dehydrated chronically as well; which is why I was so insatiably thirsty as the body was trying to tell me it needed water.

I brought this up to my nephrologist and he quickly dismissed it and said that he has never seen kidney problems from Benicar. However, most people that get the spruce-like enteropathy end up in the hospital and aren't stupid enough to take the drug long-term as I was.

There is a Benicar - Kidney Failure Lawsuit going on:

**broken link removed**

"Benicar, a blood pressure medication, has recently been linked to kidney failure, a medical emergency that occurs when the kidneys are no longer able to remove wastes from the blood and maintain the electrolyte balance. If this disease is not treated in a timely manner, it can lead to death. Symptoms of Benicar kidney failure include decreased urine output, leg/ankle swelling, drowsiness and fatigue."

Just Google Benicar Kidney Failure, tons of stuff will come up, you doc doesn't know what hes talking about
 
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Benicar is the only thing that makes sense in causing your problem seeing how badly you reacted to it. I would seriously contact those lawyers
 
Damn, sorry to hear this, my dear friend.

However, I wouldn't suspect the Benicar.

From what you've written, the kidneys were probably already taxed and the upper respiratory tract infection triggered what is called Berger's disease. However, that is only guessing as long as the biopsy results are not available.

The kidney biopsy showed "trace nonspecific focal mesangial staining for IgM and C3" and "no staining for IgA, IgG, C4, C1q, fibrinogen, albumin, kappa, or lambda".

That info is way above my knowledge level. Would that be normal for Bergers disease or indicative of something else?
 
My brother in law is on dialsys at home. This is not where they put the impant in your shoulder but the put it in your stomach area. I just want to give it to you straight. It's is more convenient because it's at home and they deliver everything to you, but he has no life.
He is always exhausted or hooked up to a machine. There have been so many side effects it's been a 6 year battle! The best advise I can give you is do your research and prepare to live a totally different lifestyle and try to get a much support from family and friends as possible. I am the closest relative to him and my sister so I've been right there with them. If your want more details PM me. My prayers go out to you brother!

I hope you don't take this as doom and gloom but I just wanted you to hear it straight. Stay strong
 
The kidney biopsy showed "trace nonspecific focal mesangial staining for IgM and C3" and "no staining for IgA, IgG, C4, C1q, fibrinogen, albumin, kappa, or lambda".

That info is way above my knowledge level. Would that be normal for Bergers disease or indicative of something else?

Sounds exactly like FSGS - focal segmental glomerulosclerosis.
I mean, textbook definition and fits your symptoms well.


Berger is IgA positive, so that rules it out.
 
Muscle96ss,

I was on dialysis for a little over a year before my kidney transplant. I don't know where you live, but if Marijuana is legal in your state, it really helped me cope for a time period with the nausea. Some transplant clinics do full panel drug tests, and I had to abstain for a full year in order to get my transplant. Silly, but nonetheless.

I usually did not work out at first on my dialysis days. Most of the time, I would go home and sleep for 2-3 hours afterwards. You feel pretty beat at first. Plus, you are on blood thinners, so later on, when you have a fistula, you can bleed again when your blood pressure goes up during a workout. You will initially have a catheter in your chest, with two tubes basically sticking out. It is extremely important to keep that area clean, as the catheter is connected to your heart. Even when you shower, you have to wrap the area around the catheter with saran wrap and tape to ensure it does not get wet. An infection in the area could be fatal. Once your fistula matures, life is a little easier. Mine was/is on my arm. As you workout, and use the fistula more often during dialysis, it will actually grow. Some people would freak because of the size of the fistula. But, it was a trade off. I truly feel like working out and keeping muscle mass on helped my survival.

You must be extremely cognizant of potassium. Too much potassium, and your heart can stop when they take blood during dialysis. The concentration of potassium can rise to dangerous levels. I literally saw them wheel out a women across from me who made this mistake. Watch all minerals in general. Calcium can get dangerously high too, causing some muscle shutdown. At one point, I had hypercalcemia, and literally almost lost all muscle in my legs and calves at one point. I was able to fight back, and went from not being able to do a bodyweight squat, to squatting 400 and deadlifting 500 two weeks out from my transplant. But, I didnt get out unscathed. I suffered nerve damage during this time in my toes. I had to almost learn to walk again over the last 4 years. No one has been able to tell for the last 2-3 years, but I had a noticeable limp before that. Moral of the story, watch eating too much of anything that has potassium or calcium. Never take a multi vitamin.

I would try easing into a 3-4 day a week routine. I would stay away from failure, as excessive muscle breakdown could accelerate problems with your kidneys. Cardio should be done every single day that you can do it. Keeping blood flow, especially to you lower extremities is vital during this time.

As far as supplements...I would caution you against using most. Coffee at best if you need energy. The only thing I found very helpful was using BCAAs on top of meals. Especially with the lowered protein intake, adding 5g 2-3x a day with meals can help prevent muscle loss. I read into some alternative therapies, and there is interesting reading on MK-677 and cialis/viagra during dialysis. I am not recommending these, as taking in anything could have possible negative consequences on your health. But. the theories are interesting nonetheless.

I am just sort of rambling here, but if you have any other questions, shoot.
 
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I have nothing to contribute to this conversation, but I just want to let you know I'm praying for you muscle96ss :(
 
Muscle96ss: I hate to see this. You're one of those members I really enjoy seeing chime in from time to time (usually gh related). It's horrible luck and I hope you get some insight into what may have caused it eventually. I'll be following your recovery and sending positive energy your way. Hang in there bud, it's darkest before dawn.
 
Could that be because of using 192 aa GH instead of the more natural 191? I remember hearing online that it was tought the 192aa could cause an autoimmune response in some people.
Very curious about this...
 
One other thing to add about the cause of my disease. My own hypothesis of what happened is that it is related to the BP med Benicar.

I began taking Benicar at 20mg and then 40mg a year or two ago. I have had IBS off and on for years, so I didn't realize that the Benicar was the cause; but from the time I started the Benicar I never had a solid poop. In addition, I was always so fricking thirsty where I would just chug water.

Last summer it got to the point where when I would drink water I would have to poop and would poop out the water I just drank it seemed like. I was pooping/diarrhea anywhere from 4 to 10 times a day. When I was back east on vacation with family, I finally decided that I was going to see a gastroenterologist when I got back. Ironically, when I got back I switched from Benicar to Telmisartan and have had nothing but solid poops since and back to a normal non-IBS schedule. So there was no need to follow through with the gastro.

I did some research and it turns out that Benicar can cause a spruce-like enteropathy that mimics Celiac disease. So I am wondering if that had something to do with this whole mess. My guess is that if I was discharging all the water I was drinking that quickly, then my kidneys were probably severely dehydrated chronically as well; which is why I was so insatiably thirsty as the body was trying to tell me it needed water.

I brought this up to my nephrologist and he quickly dismissed it and said that he has never seen kidney problems from Benicar. However, most people that get the spruce-like enteropathy end up in the hospital and aren't stupid enough to take the drug long-term as I was.
I sent you a pm before reading more of your hypothesis here. You're making me paranoid about ARBs. I use Telismarten though, not Benicar. Still, seems like a possibility. I mean other than that, I don't know what else would trigger this strange immune response and damage kidneys. It's definitely concerning. I can't believe you're dealing with this. You're way too smart to have negligently fucked yourself up. This is only supposed to happen to reckless, abusive meatheads! I'm still kind of shocked and can't help put myself in your shoes. It's making me a little more nervous about all this Chinese gh. Can't help it.

Posted earlier before I read through everything. Not meaning to multi post spam. This is just seriously rattling me way more than expected. We pm often and you're well informed, especially on gh. Shit like this isn't supposed to happen to people who know what they're doing and aren't abusing! It's hitting home for me almost to where I want to reconsider what I'm using. I would suggest you get on board that fucking Benicar class action train asap!

My last GFR was 101 in February but I'm testing again soon to check liver again. Been using telismarten and praluent some time now too and keep watching the liver because of the psk9 (praluent) we're basically testing for the fda lol.
 
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Muscle did u get my email mate ? I didn't hear from you on it. Just wondered if u speak to the British Pro whose details I sent u ?

Sent from my A0001 using Professional Muscle mobile app
 
I am very sorry to hear this muscle96ss. I wish you all the best and hopefully things turn out much better than you think.


I didn't know he had gone though this. He used to date someone I know.
 
Muscle96ss: Hang in there!

Sorry to hear of your health problems Bro. I am sure many on the board will be able to guide you to useful information or contacts. While I have none to offer myself, I will keep you in my prayers and thoughts.

your brother in Christ,

Lucky
 

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