Has anyone tried Photoluminescence therapy or ultraviolet blood irradiation therapy?
marcia, you know I love you right????
well I used to work for alternative doctors. the operative word here is Used to. Oh the horror stories.
Maybe you are an exception, maybe your needle guy was one..... and I'm sure there are others who take precautions.
However there is SO MUCH ignorance out there that I'm willing to make that blanket statement on ovservations alone...and then there is the science of whats being done and why...and whether one can by pressure achieve the same goal without punctures must be considered. The trouble is lots of docs really don't gets how little blood may spread this disease. Some countries are still reusing needles to the DAY without sterilizing them...what does this tell us about knowledge, wisdom, or laziness in general.
example: yesterday, a lab tech drew my blood...and spilled it on the arm of the draw chair.....only one drop....... and DID NOT sanitize the chair.
now mind you, these people know half the patients in the clinic have HCV...mind you I told her I had it...mind you I sat there dumbfounded looking at her like...come on..whats wrong with this picture....she never got it..
if you think all accupuncturists have sterile offices think again.
Or, perhaps it helps if we think that every time we puncture ourselves we introduce the potential for infection and blood poisoning a small thing? I don't know...right now I have an infection in my foot from a puncture and bone break...
to an immune compromised person, one on chemo qualifies as such, any and all unnecessary breaking of the skin is to be avoided. You introduce staph to your blood stream. On the surface of the skin it usually remains harmless...in the blood it is far from it.
as I said, from what I saw in working in doc offices, 15 years doing physical therapy...
there isn't one chiropractor, accupunturist, or podiatrist I be caught dead working for.
And, there quite a few medical doctors these days whose office sanitation is equally deplorable..but that's just my opinion. If I go into an exam room, and it's filthy....I'm leaving. If they don't keep their premises clean, how likely are they to keep their instruments sterile is my reasoning here.
this is really NOT funny...but beleive it or not 2 weeks ago I went to a new doc..because I couldn't get in at my regular doc or hospital....so I took a recommendation....and the place was so dirty I took several pics cause I knew my hubby would never beleive me unless I brought proof...the sink, exam table and counter were third world filthy. Beyond belief!!!!!
If you like I'll send them to you....and then tell me what you think has happened to so hamper the mentality of medical sanitation..because I'll be darned if I can figure it out.
In fact...I'll try to post the pics in here so all can see. I don't know if phone pics will really show well in here...but I'll try.
Hi there and good luck with a very difficult decision.
meki and Jim and others have posted many of my thoughts and done better then I could.
Before treatment my health was near perfect. Probably living with C for 20 years. Very little liver damage and a 1b with very low viral count. I was sure the liver docs would say to come back in a year and see where my liver was but NO they scared me into treatment. Three+ years off treatment and UND but now so bad off from sides that am now on SSI disability with no foreseeable end to the hell.
To your basic question... I dont believe there is any indication as to how someone will end up. I do remember my wonderful liver nurse remarked that I was one of two patients she saw that "couldnt wait to get off treatment".
For me I didnt want to treat and given the choice to I would reverse time and NOT treat. I also believe that once you start to treat there is no going back...
Again, good luck.
Acupuncturists here in Denmark use one time throw away needles, so I see no reason not to have acupuncture. I'm sure it's the same in the US. Just make sure that they use new needles. When I lived in Indonesia, I used to buy my own needles at a Chinese supplier. I would take them home with me after my Acupuncture session. I stored them in vials in a 70% alcohol solution. They did not have the throw away kind there, so that's what my Acupuncturist advised me to do.
well hows that dylan song go...you can call me jimmy...or
vou can me pops, call me grams, just don't call me dead meat quite yet!!!
or something to that effect...
they say that Pat Garretts got your number..or in this case HCV..so sleep with one eye open as bobby once sang.
I hope you can work too....for guys it's a little easier...maybe because you have more liver and muscle to deal with all the drugs....just remember when in doubt....go pharmaceutical not postal. (and for gosh sakes don't go to no accupucturist....sheesh, have we learned nothing about how this is spread people)
My GP gave me ativan for anxiety and has tried to discourage me from daily use....I agree....but try dealing with a hyperactive anybody for a few hours while on Riba...and you soon discover that a case of nerves brewed in tornado alley ain't leaving you no Kansas to hang onto.....as long as you know that going in, you'll be smart enough to cry uncle if need be....half the battle is knowing when to get to the storm celler.....
"There are months on tx I've thought were from hell...and other months I've just gotten used to the hell...or something...who knows....at any rate....you take it one day, or one hour at a time, and keep your goal in mind...and you'll be fine"!
Oh, that sounds like being in jail a bit, I think I can hang with that thought, as long as it's just a thought, as I'm too vain to let the youngsters call me POPS. LOL Then again, it sounds like detoxing off of opiates? Ouch!! Maybe I can go through tx thinking like it's a sentence to some cruel unusual tx. LOL Well like you said "Just remember I said that you have your first tx induced cry....and come tell mama...we'll be here". Thank you much for that reminder. Seriously though, I hope whatever happens I can at least remain professional at work, if I get to continue working. Also, I hope I don't have to think of it like I'm serving a sentence, but I will do what I have to do. It's amazing, and I've seen it happen right here on this forum. It's amazing what people adapt themselves to, when you have no choice. I hope everyone is doing as well as can be expected, or I hope everyone on tx is not going through too many sx's and life is now on cruise control. take care
trish: yay! good news - hopefully you've now sailed past the rockier shoals of cbc fluctuation and will be bored with smooth cruising for the rest of the passage. It'll be curious to see what Roche does with r1626 - clearly there's trouble on the wbc front.
jim: sometimes I suspect we expect the impossible from our drs/nurses. As I was lying on the gurney in the pre-op parking area waiting to be wheeled into the op room, I had two guys in their 80s on either side of me. Both talked in a slow, hoarse whisper, but knew *exactly* what they were talking about ( one was in for his 20th cardiac op ). The nurses, though competent, helpful and friendly, didn't seem to really hear a word.
you are so right...docs don't know what you feel.
I'm laying on my couch 24/7 but now "low" enough for procrit...
let them try walking a block in my shoes!!
you've gotten plenty of good advice...
let me just add, look you can lower cholesterol without stantins, oatmeal, fish oils, omega oils, and of course PPC which you've heard of in here..all safer routes than statins...
Two: my observation, not an across the board generality but perhaps noteworthy is that permanent post treatment symptoms seem to go more or less hand in hand with the age and general health of the individual to begin with....notable exceptions might be those using other substances which can either add or detract from that.
Meaning, the older the person, the more likely they could develop immune responses, or "metabolic syndromes" because of the cumulative weakness in health.
Now today I was reading on the fatique hormone connection in HCV...and started a thread on it.
Bottom line is, my perspective, the weaker the endocrine and lymphatic system the more risk of sides. I take HGH for my pituitary...and this gets me to "normal" levels so I can repair tissue. It has not allieved all side effects...as I am only taking a therapeutic dose.
One individual who has had a great many side effects is also a male taking estrogen.
the thread I started today may give some insight as to why the overuse or abuse of any single hormone, or a male put on a hormone that imbalances his whole endocrine system, even if done for preventative reason, say to prevent protate cancer, still could lead to more than the average number of permanent post tx side effects.
The question in the end is how much is the HCV tx...how much is all the rest.
Lastly, there is a certain segment of HCV people who persist in using marijuana, drinking, or using other drugs known to harm the liver and health in general. While that certainly does not explain why everyone that has had a bad time has had it...(so PLEASE people don't yell at me peple...no assumptions about anyone in particular here)....but one must consider the idea that all those things factor into ones final results.
Judging by what one clinician told me, and the research also backs this up, the continual usage of any such substances greatly effects both liver outcome and general health, and the recovery of a healthy immune system as well...and these are not really items still up for debate in medical circles.
what is unfortunate is that not enough is known about the pharmacalogical role that many meds play in all this, but what little I've researched suggests we had all best tread cautiously into that realm. I've already discovered 4 Rx's that I was put on were toxic...
One must also note, to a failing liver many substances thought to be safe no longer are.
I think you'll do really well on tx , and yes it's tough..but try not to worry about it too much....you've seen the good bad and the ugly in here...so you will be an informed patient at least....and hopefully remain a positive one. Just remember I said that you have your first tx induced cry....and come tell mama...we'll be here.
There are months on tx I've thought were from hell...and other months I've just gotten used to the hell...or something...who knows....at any rate....you take it one day, or one hour at a time, and keep your goal in mind...and you'll be fine!
Yes, thanks for pointing that out to me again, I had them separated before but my retention isn't really good and seems to be with me one day and totally escape me the next. I'll be sure and have my drugs in a row so to speak when I go see the GI man. There's at least a couple of threads that you all have refreshed my memory with, I will study them really well before my appointment. Hell I may even keep them in a folder in case I have to reflect on them during my conversation with my GI. I'm sure it will go well, I was always on a wait and see approach until just the beginning of this year when I learned a friend is on a clinical trial and that started my pursuit to tx, well that and other ongoing ailments. Anyways, great teachings and words of wisdom from all. later
Re: Alinia. It was said up above by Willing, but I want to make sure you don't miss it for when you talk to your doc. Alinia is NOT a statin. It has nothing to do with statins or cholesterol. It's a drug used to treat parasites that has been shown to have an impact on bringing down viral load. It's just one more drug in the arsenal.
Here are some links to articles about statins and fluvastatin in particular which has been shown to be the most effective on viral load:
Hopefully those links don't get wiped out.
Yes, a number of hepatologists have given the green light to statins for at least four years. Of course it's important to monitor enzymes, but that is recommended for statin therapy even if you don't have HCV. As to others down the HCV food chain, word travels slower. For example, my cardiologist this year asked me if it was OK to take statins because of my liver.
I have alot of information that I'm gonna take with me to see my GI man. The last time that I spoke to him in March was the first time I ever said anything to him about actually going through tx. He seems like he knows what he's doing and I'm gonna be asking him a whole lot of questions. I think he will see a benefit in prescribing me a statin, either Alinia or one of the others. It's really been my new regular doctor who is overly cautious and obviously doesn't know anything much about it. I've read enough posts just from my question that I have enough information to hit up my GI really tough this time around. Also, I'm gonna ask him alot of other questions as I am totally serious about him doing his best on me as this could make me or break me. I used to have a regular doctor and he was the best, he didn't know a whole lot about HepC but he always sent me where I needed to go and he wouldn't let me think of HepC in a negative context, ever. I had to see one of his substitutes one time and that a-hole told me I was gonna die. Just like that, I flipped out. I was soooo mad at that d-ik, when I told my doctor what happened, he flipped as well. He was soo mad at that jerk, unfortunately my godly doctor retired. Oh well, my spirituality is what guides me now, so I think I'm in good hands. God Bless
They rebounded just enough...I was at .3 and needed to be at .5 to avoid a dosage reduction and the blood test on the Wed after they pulled the trial drug came back at .5. right on the border. So once again, no dosage reduction. Now I don't have to test for two weeks from that Wednesday, so it seems they figure the drop is from the trial drug and the rebound is from the lack of it. The doc at the hospital I go to wants to test for some other components of the white blood cells as well .. he's getting curious about some other potential impacts. And so it goes.
jim: 4 years? wow, your docs must be prescient :) as far as I know, the hcv-statins connection was first reported at last year's ddw, less than a year ago, and the safety of statins among the liver-impaired is still under review, eg
trish : so how about those lymphocytes?
Here is a thread that was going not so long ago here.. someone asked about fluvastatin, a cholesterol-lowering drug, that he'd heard it lowers viral load. The subsequent discussion includes links to studies that have shown current thinking on statins for persons with liver damage and HCV, that they actually not only help reduce viral load but are even being considered as a substitute for ribavirin pending further study.
Here's the link to the medhelp thread:
As long as they keep monitoring you, the evidence seems to indicate that not only can you have statins AND do treatment but that it will likely HELP you while on treatment towards having a better outcome. Always that little roll of the dice you take that says if the adverse effects come, you have to stop. But the evidence seems to indicate it's potentially worth a throw or two of those dice...however, once again, that's a very individual thing.
I believe Jim's on target - your Dr might be (slightly) out of date.
Yeah, about four years "slightly" as are the FDA inserts :)
>Why won't my doctor prescribe me statins,
I believe Jim's on target - your Dr might be (slightly) out of date. Until last year, FDA required package insert for all statins to include "active liver disease" as a contra-indication. This restriction was recently removed for certain statins
"Researchers have investigated the effect of statins on hepatitis C for several years, but the treatment is not approved by FDA. In fact, use of many statins is contraindicated in patients with active liver disease. However, FDA recently removed this contraindication from the package inserts of 3 statin agents"
the link will probably be expunged by the censorship screen, but you should be able to find the exact FDA regulatory changes on the FDA site.
Also, Alinia is not a statin, it's prescribed for control of diarrhea caused by parasitic infection.
Overall, there's not much choice with respect to the ifn, and you won't know how much damage it's done, if any, until it's too late. In terms of planning the best you can do is to avoid taking more than you need (ie if you can put together a combo that decreases your ifn exposure without reducing your odds of svr you're probably better off).
I know this thread isn´t about you but gotta ask you this.
Your a grade1 stage1 right?
Did you risk to get resistant to protease inhibitors by signing up to that studie your in,
I know nobody could risk not to get riba in future studies, but what about getting to little peg, do you know what meds youve got by now?
The reason I´m asking is that fret seems to be so sure to get in a studie is he knowing the risks? did you?
I didn't want to tx. I wanted to do some alternative treatment.
When I realised how bad my liver damage was, I txed... and relapsed.
I have no regrets about doing tx. I would always wonder, 'what if', if I hadn't.
As Meki pointed out, it does mess with your brain. You need a good doc to monitor you and you need to listen to your body/self~ hard to do when you are affected by drugs, oops, I mean meds.
best of luck, OH
"The broader question posed by Trish is whether pre-treatment physical ncondition can significantly affect side effects on treatment."
Well.. not just fit but overall health in general. I had no.. and I mean no...other health issues. So I didn't have to deal with how treatment would impact any of those issues. Please understand I get how very fortunate I am. But anyway...I have wondered if the combination of a certain level.. not high level .. of fitness along with the genes I've been blessed with had anything to do with how it's going for me. And I'm thinking it's just the luck of the draw. It's not easy but it's been manageable so far and I just keep rolling with it and hope to all the way to Week 48.
I don't want to sidetrack fret's thread and make it about me. I just wanted to clarify what my own personal conjecturing has been. That's it, that's all.
The grass always looks greener on the other side. But HCV, like treatment, has its own set of possible side effects and we can only speculate where we SVRs would be if we didn't treat when we did. I feel pretty certain that had I not treated successfully when I did my transplanted liver would be cirrhotic by now. A lot of people feel confident predicting the rate of fibrosis progression and that might work for them but I don't buy into it. And then there is always diabetes, Non Hodgkin's lymphoma, HCC and so on to consider.
"Patients who have chronic hepatitis C with advanced fibrosis have twice the risk of developing liver cancer if they also have diabetes. These findings are published in the June issue of Hepatology, a journal published by John Wiley & Sons on behalf of the American Association for the Study of Liver Diseases (AASLD). The article is also available online at Wiley Interscience (http://www.interscience.wiley.com/)."
Fret: Why won't my doctor prescribe me statins, something for my cholesterol?
As I mentioned in my previous post, your doc probably isn't up on current data. Dont waste time wondering "why" and spend it finding a liver specialist who will steer you straight.
Yes, did "dabble" in high dose ribavirin (HDR) early-on in treatment, but that reasonably only accounted for a small part of my sfx early on during treatment, and I'm sure had nothing at all to do with any post treatment issues.
The broader question posed by Trish is whether pre-treatment physical ncondition can significantly affect side effects on treatment.
While I'm sure its better to be fit than not fit entering treatment, my feeling is that different individuals react differently to these drugs often in a significant way. I'm sure there are many fit people who didn''t do HDR who also tanked during tx. One who comes to mind -- forgot her name -- is a lady who did motocross racing/stunts for a living and had a horrendous time with sfx. And then I'm sure there were a number of couch potatoes that didn't have such a rough time.
Jim will probably add that, in addition to being in good condition, that he may have overdone it a wee bit early in this treatment. Jim dabbled with some higher doses of riba early on that caused him to withhold riba in his early weeks and to deal with the ramifications of said aggressive riba'ing. That may have shaded some ensuing weeks for him. Jim can fill you in.
Jim: "I was very healthy/fit going into treatment and it hit me very hard. Three years post treatment I still suffer from skin problems and what my doc thinks is an accelerated metabolic syndrome. "
Well that blows my very narrow based-on-my-own-experience-only theory right out of the water on my own level of tolerance of this treatment being due to being in good health. I would hazard, Jim, that you were much more fit than me going into treatment just based on bits and pieces of information. So .. that shuts me right up on THAT one.
Fret, as FlGuy said, you may not see "Hepatologist" as they are (someone correct me if I'm wrong please!) a gastroenterologist who specializes in Hep C. You find them in the larger teaching hospitals more like it .. and you may have to do some digging and ask the GI's that you find how much experience they have with treating Hep C and review their treatment approaches with them...see how willing they are to work with you and answer your questions and how open they are. It's important to find a doctor that you're comfortable with as much as you're able.
Don't be too hard on the family physicians. Hep C is not their specialty. The ones who don't acknowledge that are the ones who bug me .. my own family doc knew that it was out of his sphere and even though my liver enzymes were normal, he had the foresight to pass me on to a specialist instead of just telling me to come back for tests every so often.
I don't have anything more to offer here, fret...only good wishes. I'll leave you to the more experienced people who are giving you great advice and insight. I just wanted to encourage you, that's about all I've got here. :) You'll figure it out cause you're asking all the right questions, growing leaps and bounds in knowledge and you will figure it out like we've all had to do. Good luck, my friend.