I may have red palms and fatty liver, but I don't have cirrhosis. I am a stage 1/2 according to bx and fibroscan. So don't worry about it! Theres not much you can do at this point. No dr. will give you a bx on tx. Maybe you can get one after.
Being UND at week 4, even if it only down to 500, is very good progress and good news to you. If it was me, and I relaize it's not, there would be no way that I would extend beyond 24 with the attributes that you have unless I was detectable beyond weeks 8 or 12 . There is a reason that geno 2 and 3 typically have higher tx success rates.
what you guys have said is correct, but the thing is, the test i used at week 4 wasnt very sensitiive...went down to 500 IU/ML only.
i got another more, sensitive test from a distant hospital at week 7..i think that was at least 100 IU/ML...though don't know the exact amount, may have been even more sensitive. still have to confirm from the hospital. that was UND too.
now i've injected at least 3 shots on bruised tissue.
WBCs and HB have risen slightly from week 6 to week 10.
i'm contemplating extending treatment to 48 weeks now.
factors in my favor:
-young age, 25.
-less than 4 years of HCV infection
-low pre-tx viral load of about 50,000 IU/ML.
-very low weight (56-60 kg)
-lean body with very little fat
factors against me:
-a rapidly developing small blotch of palmar erythema under my little finger (pre tx)
-coupled with suddenly developing tiny telangectasia on ribs and ankles (pre tx)
- weight gain of 4 kg on treatment
what genotype are you? A 2? The factors you list don't sound like reasons to extend to me. You can get a fibroscan in France to see what stage you are. You tests were UND, albeit not very sensitive at 4 weeks. You are young, haven't had this long, without knowing the stage, I don't know if I would extend. See what your dr. says.
In somes ways it's sort of academic now. I think you are in about week 11, going 24, tolerating the meds ok and I expect you intend to finish the 24 weeks, right? You reached und early, around week 4 have not had hcv very long and have not had a biopsy. So at this point, or until you have a bx, there's not much action you can take anyway. Although not an expert in field, cirrhosis can come with a number of 'side dishes' like platelets, palms, nevi and a number of others that can be sign or symptoms of cirrhosis. Since you are getting farther down the tx path, the action seems to be keeping up with the tx and managing sx as best you can. You've got seveal positive indicators in your favor, just work your way through tx and finish what you started.
Normally ONE symptom does not make a diagnosis for any illness. With cirrhosis having only "red palms" but no drop in platelets or enlarged spleen or any other symptom or sign would make it highly unlikely that you have cirrhosis. I don't even think a doctor would recommend a biopsy for you as you do not have signs that indicate the need for a biopsy or signs that you have cirrhosis other than red palms and red palms CAN be normal for some people or have some benign cause.
I agree with others that suggest you might benefit from the use of an anti anxiety med. Treatment is anxiety inducing and as I recall even before you started treatment you were dealing with a high level of anxiety. You might want to talk to your doctor about using an anti anxiety med. for the remainder of your therapy.
Please nice guy you need anti anxiety medications. You really must stop with all the obsessions. It's needless and might hurt your chances of SVR if you continue.
You have a normal problem and it must be addressed.
there are a few 3's that relapsed here. I guess it's a decision you are going to have to talk with your dr about. I wouldn't base your decision on those factors you listed. You did get UND at 4 weeks. What was your starting VL?
Hi Florida Guy
I was wondering how old were u when u did your first round and your VL after relapse?
Nowadays, I kinda agree with niceguy about the extending 2 48 issue...
We have several weeks of TX on our backs and we realize that we can tolerate this thing for more than 6 months (or we think we can)...so even if the standard TX for 2/3 calls for 24 weeks why can't we be proactive and extend? I remember several episodes of red palms in my life and now I'm really getting scared.
My FS says 10KPA and thst F2/f3...
I'm a big man, over 40 and I haven't lost any weight on TX (in fact I'm gaining pounds) because of the fat ingestion for the riba absorbtion.- Tomorrow I go for for my 4 wk PCR and still don't know the results from the previous 2wk...:-(
Do u think I may expect to get worse SX as I go or do the SX level out after a month?
Gracias for your response and have merry Xmas
I finished 1st tx this time last year and was 54. For the reasons I mentioned (cirrhosis, age, riba) the doc feels I relapsed and I think those are factors to consider if thoughts are to extend, with the greatest decisions based on vl levels in the early (2-6) weeks. Six months after tx vl was at 6 million copies. In Niceguy's situation, he doesn't have all that 'bad' stuff - in my opinion. I just hate to know that people are taking one more riba or one more shot then they need, but it's all a calculated risk. As to sx's, I think they are cumulative. I felt pretty good in the first 4 weeks, and now (week 8) I feel that focus, energy, lethargy degrade a little more each week. It takes a few months on tx to get a consistent (good or bad) trend going to set expectation for the long haul. I don't think I'm even quite there yet.
I also think you should seriously consider extending however I do not believe niceguy needs to extend, he does not have damage like you do. I know he worries a lot, but all his info points to him having either no damage at all or a very small amount plus he cleared it by week 4.
I too am a 3a and relapsed, my recent Fibroscan score was 11.1 which is not a whole lot more than what you have. I would extend if you can, Scuba. I would do 48 weeks if I were you. Also you have a bit of a weight issue, I'd try to lose that if possible. You dont have to eat a ton of fat with the Riba, just some to get it rolling. That aspect is important in the first part of tx but you dont have to keep up massive amounts of fat for the entire tx. How much riba are you on? I'd take the max I could get my hands on in the beginning of tx.
I'm a relapsed G3, but there were reasons that I relapsed that are not necessarily applicable to you (early cirrhosis, older than dirt, underdosed with riba, bad pcr scheduling and a few others) - almost the opposite of you. Without a compelling reason to extend, why would you? If anything, you might consider a shorter, rather than a longer course, of tx. Talk to your doc.
thanks for responding...
So if I feel reasonably well the first 4 weeks that does not mean I'm not gonna feel crappy later on right?
So I guess I'll base my decision on the VL readings early on...
but the male + >40 + BMI formula is gotten me paranoid and since I'm tailoring my TX based on the experiences here, I thought it was common sense to extend :-(
Today I feel exceptionally well (except a mild riba rash) and I have found the I'm able to concentrate better and produce several good ideas at work...I wonder if my body can feel it has achieved SVR? That would be extremely cool wouldn't it? naahhh
Hi Kalio, gracias 4 your input
I'm doing 800 RIBA /180 IFN...the standard for 2b.
Tomorrow I will insist on the 48 wk. But like I said before, I have no means of getting procrit or neupogen on SS so I guess I have to be extra careful...They didn't want to give me more riba to start with.
My 10 KPA is also scary, and my 90 kg also are negative predictors... and the red palms that I never considered issues before :-(
One question, did u levelled out after the 24th week?
Today was the Xmas party a the office and decided not to go, cause there's gonna be a lot of booze and food and dancing.
My coworkers that know I'm treating say I look fine and also my wife says it is a piece of cake (based on how I look) God, what do they expect??...the crypt keeper in 10 days?? c
iam curious to see opinions on scuba's question a few posts up about if it is possible for liver to degrade that fast. this is a slow moving disease for the most part but i also know that anything is possible with this disease, but can you progress 2 stages in 6 months? even if you stop alcohol and eat right? hopefully his FS was wrong cuz he did not fast before test.
There are a lot of variables that play in our minds, especially when we read of the experiences of others. About a year ago, and it comes up every once in a while, is the risk/reward about extending tx. If we consider just geno 3, the question that we undoubtedly ask ourselves is 'how better off would i be if I did 36 instead of 24?'. What magic may lurk in those additional 12? If I do only 24 and then relapse only to do another 48, that's a total of 72 and how much of that could have been avoided if I did 36 in the first place? How much of a handicap (in weeks) are things like age, weight , significant fibrosis, blood sugar and diabetes. All tough questions to answer and tougher to committ to. It's usually later in the tx week (4-5 days after shot) that I begin to feel a little more spry and useful. But then it all starts agin in 2 days. As to the BMI, I would expect that riba at 13-15 mg per kg is a minimum - are you in that range? Being a replapser (24 and now 46 more) my point of view is jaded and not so sure where my objectivity is right now.
I don't think Im a great example for how people do on tx. Put it this way, I would not be chosen as the poster girl for treatment! I have had a pretty rough time although I have NOT had to use any rescue drugs, I have had lots of bone/joint pain and extreme fatigue and nausea all the way through. My Hgb has hovered around 10 the entire time (including the first tx of 6 months and now an additional 10 months more tx so far)I have had a few days where I felt pretty good, was able to take a walk or participate in life in a normal way, but they are few and far between. Usually if I attempt activities, by the time I am showered and dressed to go I have to go throw up. LOL Then if I DO go, I start getting light headed and feel like I will pass out. I am so glad to hear you are able to work and so far not having a hard time with it. No one knows how you will do, it is different for everyone.
I also took 800 riba the first time as instructed. I do feel I was underdosed on Riba. This round I took twice that for the first 6 weeks.
Please post your PCR results when you get them! Im dying to know how that went.
I'd say I needed 1200 riba but the doc insisted on my geno. Said 800 enough and even Dr Cecil says on his web that 2/3 "easy to treat non americans" could even do with 400 Copegus a day??? weird..Like Rev says, this thing is messing me up mentally...(even more than the meds) Just to wait 2 weeks for a darn result drives me nut.
On thing about my FS results..the first one was 3.8 KPA and with a 6 months difference it jumped to 10 KPA??? I didn't fast int he least 2.. HR mentioned something about blood thickness.
I ask myself is that degradation biologically feasible even if I stopped drinking & smoking after I learned I was HCV+??
I agree, the head trip is a big part of the battle. Keep in mind that MOST with your geno DO clear the virus on 800mg a day Riba and 24 weeks treating. We always think the worst, and I have already relapsed so my view is jaded.
All relapsers get a bit jaded, the polish is definately off the apple for us. So remember here, like ahywhere people give their opinions, always "consider the source" a person who has not relapsed will tend to be more optimistic about tx success than those of us who have had to go at this more than once.
I hope you have a wonderful holiday and all your loved ones do too!
I get ya Scuby. Ours is a black tie event on Friday night. I am going to go for appetizer hour to make an appearance then I'm outta there.
While I know I ADORE the little appies (no fras gras for us give us little hotdogs and chicken on a stick hahahah!) and can eat them instead of being tempted with a drink...I just can't take the chance on staying all night.
So I'll go home and do my shot and just PRAY I don't win the full length full coat or the plasma screen tv that are just two of the door prizes. Can't win unless you are there.....and that is my luck hahaha.
I think you're smart. We can go to office parties next year and for the rest of our lives. :)
I know that his decision was not based solely on the goofy pcr. All the high risk factors I have, plus not having sensitive tests. He's not even sure I am UND now! Yes, HR did clear it up with the lab tech, we were put through to several different people, especially when HR told them he was their competition. I think Dr. F disagreed when he read the 20 week Pcr and the difference, but all in all there are more factors than just the PCR goofup. By not having any sensitive pCR <75 I may have had 200 copies throughout tx. I think just to be safer, it is a good idea. In fact, HR suggested maybe not to mention the goofup, just give the tests to the new dr, if extending were an option. Of course I did mention what HR said and the results of the calls to the lab with HR. It didnt' seem to sway his opinion either way. He seemed to see stuff on the other US, bx, low platelets, high VL, red palms etc.
I saw Goof's dr. and he was sure about me extending...not just because of the goofy PcR. He does seem to be agressive. When I mentioned the Oxymatrine (although I forgot the name) he didnt know of it, but smiled when I mentioned some thoughts about throwing some other antivirals into the mix. He didnt' say he approved, but how could he? HR believes eventually we will have a cocktail of antivirals, what they will be is unknown of course,
Tis the season to let a little optimism into the thought process. Finish in March'ish? UND for a big number of months (40 ish?), grown up doses of riba? You are not in a bad spot and when I'm done my tx#2 will look like your extension. I have no doubt that the end of my 46 weeks will see an end to hcv, no doubt. Why not you? What have you not done?
How nice of you to say those things, our American reputation in the world is somewhat tarnished at the moment unfortunately so it's nice to hear a compliment. I love Spain and have been there a number of times. I found the people I encountered to be very open and honest and sincere. Spain is my favorite country in Europe not just for it's beauty and art and sense of style, but for the wonderful people I met there ( not to mention the great food and wine)
I cant wait until I am over this cruddy disease and can visit Spain again.
Just my 2 pees worth (2 cents), I've seen comments from two of the top bods in the UK to the effect they are seeing more Geno 3 relapses than initial studies suggested.There are now ongoing studies Txing for 48 weeks with a view to preventing these relapses.Personally I think the 4 week undetectable people will be fine on 24 and if it were me I'd do 48 if not.I realise it's each individuals decision to make but we all need as much info as possible.The red palms thing is a bit of red herring :) it takes someone with a lot of experience to tell the difference between normal and cirrhotic redness.
hey Citizen, can you elaborate more on the experience needed to tell the difference with the red palms? i think you meant a good hep doc can tell but do you know anything about what the difference is? i seem to be obsessed with my palms recently after reading about they could mean cirrhosis. i have no other sx and labs look good but palms are darker pink not really a deep red. i did not have a bx but my fibrosure result was 0 fibrosis. i guess this is why most people here say to always get a bx, otherwise you will always 2nd guess any other type of tests, fibrosure, fibroscan, etc. man the stuff you read on the internet can make you go crazy, i was fine until i read about the red palms then looked at mine and noticed they looked different and have been worried ever since. sometimes i do not know if my mind is sicker then my body!
I just came from my doctor and he was talking about how new information he'd seen on genotype 3 showed it progressed to fibrosis much faster in many who have that genotype. Faster than other genos. That does seem to be true amongst the people here. I asked for specific data on that and he didn't have it off hand but would look for it.
He also is willling to keep my tx going an additional 6 months if I decide to do that because if I stop, I won't be able to get the ins. company to pick it up because they call tx "experimental" past 48 weeks for geno 3.
That is one factor that might be a predictor of more rapid progression. Once damage starts developing, it progresses faster in any genotype.
Geez, what have my red palms started! Sorry about scaring people. As far as treating longer and HARDER, I think it will happen for more of us as time goes by and new studies come out. Kalio and I spoke about all the factors involved in making these decisions, not just red palms, bx or fibroscan. BX only shows a small sample of the liver. My new dr. noted that mine was small. My fibroscan results showed various levels, from 4 to 7 KPS. As Kalio and I saw on the slides of one person the amazing difference in scarring in one place compared to the rest.
HR recommends fasting, definately before fibroscan. Non fasting could have raised your scan from 5 to 10 possibly. It would scare me as I have heard Kalio talk about how fast the fibrosis has progressed with her as a geno 3. If I were a geno 3, I think I would extend to 48 weeks, if I could. I would also not watch and wait as a geno 3...given the factors of age, BMI, bx, pretx VL, length of onset. It is all a c@ap shoot, but you sure don't want to do this again.
I like the way Kalio handled her relapse. She had a PCR 2 weeks after EOT and began tx as soon as that VL was there. She didn't give those virons a chance to flare. That I believe would help alot. Also, getting back on the horse so quickly, perhaps doesn't seem as a re treat, but rather a little break ;) Also I would insist on my Riba if I were a 2-3 based on relapses. Weight based is just a better idea.
Kalio, So are you doing 2 years? What did your dr. say about the fibroscan?
While some people here are extending, a few others are clearing the virus on shorter course treatments -- 12 weeks for geno 2 and 3 and 24 weeks for geno 1.
Personally, I see no reason for extending treatment unless your treatment stats warrant it, i.e. you're a slow responder. IMO the idea is to minimize both short-term (and possibly long term) damage from the treatment drugs by treating for the *least* amount of time that gives you a reasonable chance of success, not the *most*. One of our members, Goofydad was a geno 2 or 3, with either late stage 3 or early stage 4 damage. I believe he's in his 40's. His doctor, very well known in CA for his agressive approach, only recommended 24 weeks and basically said that any incremental advantage in extending past 24 weeks would be outweighed by the risks of the treatment drugs themselves. Maybe Goofy will catch this post and comment.
Nice-- none of those things you listed under "negative" would worry me at all? None of them. What does your doctor say?
Im not sure what I will do. I am happy he is on board to allow me to have that option should I want to follow that 2 year study. I presented it to him from the light of possibly having some histological improvement on top of hedging my bet (a small amount)for SVR. I know from this board there have been quite a few stage 3's that have cleared the virus, so that is encouraging. I found out today is I have some crud in my throat and ear, so that is probably not helping with how I feel. I guess I just got so used to feeling bad it didn't dawn on me I might need some antibiotics. You and others have struggled with various infections/bacteria so I had him check me out and do a culture.
He checked out my protein, bili, etc. and everything looks great. He is happy that my platelets have gone up even on treatment. He is happy my enzymes are 30. I was just grateful he was willing to script the IFN for me for 6 more months, now if Schering will OK it I will know I really did all I could to fight this. I told the doc about the Oxymatrine and he sort of rolled his eyes.
Im running out of Cobra and have to find an answer there. I did some preliminary looking around and got some info. but it looks not so great. Very expensive when Cobra ends. Ugh. I hate even thinking of that. You have to apply to get the other coverage within 63 days of when your coverage will end. That for me is coming up soon. I will find that paperwork and send it on, I know you have that issue too.
I was talking mostly in general to those who haven't been told by their doctors to extend like Scuba (I believe) and Nice. It's different in your case since you have a fairly well-repected doctor who suggests extension although I must admit I still don't follow his logic although maybe I don't have all the information. I thought HR pretty much put the PCR issue to rest with a definitive Negative, and I'm not sure what the other issues for your extension were. Sometimes even the best doctors are short on time and make hasty decisions and that's why I ended up consulting with several hepatologists at critical points of my treatment. If it were me, I'd be on the phone myself to the head person of the lab in question and get to the bottom of that PCR result. IMO there is no reason anyone should have any doubts about what a lab report means because it was badly written up. The results must be there somewhere.
Does that mean 63 days before the first session of Cobra is over, or after the next 18 mos? Mine is coming to an end too. I can't imagine anyone covering us. Between John, me and his daughter no one wants us!
With all you are doing now (sledge hammer it to death :) Do you really want to do another 6 mos? Maybe maintenance? Your sx are so horrendeous, I can't imagine. YOu are a relapser and high risk....so I don't know what I would do.
Have to tell you about my visit to the doc today for my 4 wk PCR.
Still no VL results from 2 weeks ago. L What a bummer.
She said I look OK and it seemed that I could handle TX okey.. I have to call tomorrow for the blood panel to see if I
My understanding is that a stage 3 does not mean cirrhosis and you can reverse your fibrosis level with treatment. Cirrhotics don't change stages, I believe, but could be wrong. I have heard of lots of people going down stages from interferon and diet changes.
It's raining in the bay area today, it has been really nice but cold. Where in Spain are you? I love Spain and have been there several times.
Initial consult was with G. Tx managed by F. Important decision points about duration included consultation between G, F and others.
G recommended 1 yr initially. I prompted revisiting based on 4 wk RVR. F concurred and ran by G. 26 weeks became the goal. I later got cold feet and discussed extending for anti-fibrotic effect and later yet extending just for safety. The livercheifs passed the pipe again (more came to this fire) and concluded risks outweighed possible benefits.
On a more serious note, GO talks about red palms, NY brings up the beaten path, then SF makes comments about longer and harder. Jim remains conspicuously silent on the creme d' nuit.
Jim, Your memory serves you well. I pointed to the Mangia and von Wagner studies and we discussed 16 weeks. With the cirrhosis we decided to go conservative, with the idea that anything after 16 was gravy and I could stop if it got too rough. That eased things alot and I coasted to 26. I was very anemic, as you may recall.
SFB - Cirrhotics can and do reverse. I'm banking on it. In fact, the general perception is I might already be back on the happy side of the line.
<small>Apparently males have an easier time. Fibrosis results from colagen build up. Seminal fluids have high concentrations of colagen. If we off-load enough seminal fluid, we can reverse. That should help explain the pink palms. As for females, for some reason it's reversed. The idea is to ingest as much fluid as you're able. Say Hi to your husband for me: Heh Joh.... Gooffa sahth Hiuh...</small>
I have been UND, but because the tests were not that sensitive I am getting a new one that goes <5.
My BX from 2000, my fibroscan in Nov. both looked like stage 1 possibly overlapping with stage 2, (as they all overlap). I really don't have the answers to what looked fishy, except the US and fatty liver v. cirrhosis in Sept. F has a lot more of my medical history than I do. One hospital wanted 25 cents a page (yrs of records) and I pick them up, or fax them free to F. I chose to send them to F. (you know how cheap I can be! LOL)
I have a referral to another hep dr. that my ins. WILL pay for. Part of my plan to see if I can get the dr. I want. If I don't like this local dr. I will complain and try and get my way. John knows the attny for the INS. group and will have lunch with him, this also may help.
Thanks for your post. I can relate to the anxiety you are feeling. I was taking bipolar & OCD meds for 8 years before tx. When I started hep c tx, my anxiety levels soared and the psychiatrist added clonapin, at a small dose (.5). It's helped me considerably. My experience is that Interferon augments many latent (or evident) pre-existing conditions/tendencies we may have. I'm not a Dr., but I have had bipolar/OCD for years, and I can recognize some obsession and anxiety traits in your posts. I hope you won't be offended by this. That's not my point in posting. I just wouldn't want you to live with the hell of the anxiety/obsessive compulsive thinking I know all too well. It's VERY painful, not to mention taxing (on myself and others). And I didn't even know how painful and taxing it was UNTIL I started taking meds to treat it. Whatever you decide, I pray for relief for you from the anxiety. You deserve it. God bless and all MY best, Aiuta
Your post was funny! Dr's can be real jerks. So she's sending an alert to the pharms huh? LOL You are correct about this place. We may not be dr's but we read the stuff, go by experience and debate it back and forth. No one is saying anything here is set in stone! Of course we never know. Even extending may not result in SVR. I think what your dr. told you is sound advise. Goofy is clear after doing 24 weeks with cirrhosis. I think 2's don't have the relapse rates that 3's are having, it seems to me.
If your dr. is sooooo rigid and mean, by all means see another if you can!
Your fibroscan at 10 is NOT cirrhosis, more likely stage 3. Tech's giving the scan can really make a difference. HR said he would never let anyone else do it, it's complicated. Also in trials they KNOW that fasting would make a difference, but they are not about to stop the trials and start over again doing fasting, so they are ignoring this. It would skew the results of the trials if they were to change all to fasting now.
So I'm and F3..Thats pretty bad ;( that's precirrotic... isnt it?
In feb I'm gonna get me another FS (with no food in the stomach of course), and let's see what happens..About changing docs I guess I'm stock with this team if I wanna be able to fibroscan all the way up to may.
My doc is not mean, she's just.. how would I put it?...testy? fed up? I guess he sees many patients a day and she just kinda explodes when my 10 minutes expire.
The team is basically ok, as long as you don't complain much.;-)
saludos to everyono in the city by the bay
I thought "G" intially was playing around with 12 (or 16) weeks in your case based on your 4-week PCR, but maybe I have it mixed up with someone else.
In any event, I was referencing your doctor's eventual decision to treat you for 26 weeks for Scuba and Niceguy's sake.
Well, I'm pretty confused with all your variables and inconsistent readings both with the labs and liver damage. Didn't your biopsy/fibrosure/fibroscan (or at least a couple of them) all show little liver damage. If so, does this get trumped by red palms and a low platelet count (how low btw)? I have no answers here, but I might ask at least one more doctor if time and resources permitted.
All valid points, but if you happen over to the other forum, in this same vein you will find interesting discussions on "box" sizes, a problem eventually fixed by a computer programmer who apparently worked on the problem over the weekend.
It seems clear that tx appears to have had a positive impact on me histologically. If you take the little info I have, which doesn't include a biopsy, my damage level has receded. My platelets going up while still on tx is a very good sign and the Fibroscan showing I am stage 3 and did not show cirrhosis that they found 6 months earlier with the CT scan is another good sign. If I can take that as fact then clearly I am heading in the right direction histologically. If I stop treating, I will not be able to access IFN, my ins. co. calls it "experimental" If I can get 6 more months of IFN to help my liver, I would do it for that reason. I want to believe I have already kcked the virus out. I can't get BC/BS to allow maint. IFN. I don't even know if C2C will continue to give me the IFN or if they will cut me off but I wanted to see if the doctor would write the scrip. Im running out of Cobra, I can get ins. through the state but it is limited and expensive.
There is a lot of evidence IFN can reverse some of this damage even if I don't manage to clear the virus so that is why I'd like to get it. It seems to be working and if I can pull the damage back I'd be a happy camper. I am doing all I can nutritionally and I seem to be headed in the right direction. I also am doing fine on my labs and he says as long as that holds true, he is OK with writing the scrip for me for another 6 months with histological improvement being the goal.
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