CF - when nothing seems to help

[coltsfan715]

Hey guys,

Well I am at a bit of a loss. For the first time ever I felt like I was losing my fight with CF at my doctors appointment on Wednesday. I have been doing everything that I am supposed to do and I was feeling allright. I have been fighting an infection the past month - I have been taking oral antibiotic (Cipro) for about a month and just finished TOBI. I had a breathing test done and it was down dramatically. The percent was at about 30 - when the last one that I can recall (non lung collapse) was about 40-45 --- My oxygen saturation was at 95.
I talked to my doc and he thinks that I have never fully recovered from my lung collapse almost 9 months ago. I am just struggling with what to do. I keep racking my brain trying to come up with some other treatment/medication I can try and their really aren't any meds that I haven't tried - that my cultures show I am sensitive too. My doc did not put me on IVs currently because he wanted to give it a few more weeks (since I had been feeling like I was at my baseline) and he is hoping that I can get over it. I have felt like I was doing well enough to go out apply for part time work and start a part time job (which I have had about a month now).
I had an xray to make sure there wasn't another collapse because I have had localized pain around the area of the collapse last year. No collapse, everything looked the same/unchanged.

I guess my main question is what do you guys do when you "run into a brick wall." Meaning you have tried the meds and everything and they just aren't working. I tried the OO, and honestly won't do it again. I never had wheezing before I tried it and have had it pretty regularly since (and I have been off it for over 2 months now). I try supplements, different vitamins and things, but I can't find anything that really helps. I know exercising is something I want to start doing, but at present I feel my work is my exercise - I am on my feet all day walking up and down stairs, lifting and moving things that are heavy (to me - I am a bit well I will say weak lol). Other than that I have been thinking of a post made by someone not to long ago about a diet they started that is supposed to help with inflammation. I skimmed over it at the time, but would love if someone could post that information again. There was a book, if I recall correctly, that the doctor had written that detailed a diet plan or meal plan. The inflammation was not necessarily CF or lung issue related I actually want to say it had something to do with a skin disorder maybe ... but that the lady that posted about it thought since CF involved inflammation it was worth a try.

I just feel like I am running out of options and am not ready to accept that thought <img src="i/expressions/face-icon-small-smile.gif" border="0">. I know you guys are full of ideas on alternative treatments at times. I just want something that could be helpful - but that is not high risk because I don't want to damage anything any further than it already is <img src="i/expressions/face-icon-small-smile.gif" border="0">.

As for my job Thank Goodness they have been great. They had me put in time off from work in the event that I would need to be hospitalized and made me aware that if I missed 30 days straight the only thing that would happen is that I would have to start my probation period over and fill out all the paperwork again.

Thanks for reading this and any input you have.

Best Wishes,
Lindsey

 

[thelizardqueen]

I'm in the the same boat as you LIndsey. I still haven't bounced back from an infection I had Jan-March. I did oral, I did inhaled. I'm on new inhalers, my PFTs have gone from 82% to 69%. I'm on the oral OO, Im starting to exercise, etc. It seems that nothing is working. My doc hasn't put me on IVs yet, but I'm calling him tomorrow to see about going on them. I feel like I've done everything, and what - now I have another set back. I think we all go through this - the feeling of being helpless, that this is the end. Know that it will get better. Maybe the IVs will work for you. I don't have much advice to offer you, as I'm in a funk myself right now about CF.

 

[anonymous]

I am in the same boat too. I am on iv's for about 4 weeks and tom. prob. will go into the Hospital for desisitization to meripenim ( an antibiotic that I am allergic to and will start zyvox for mrsa that i just started to grow! I still have that terrible thick cough, shortness in breath, lack of energy pft's dow to 50's from the 80's. I am only 90 pounds and do peg feeds. I think the only solution is too rest rest and take care of all your needs. I stress your needs. I am married thank G- D with 2 children 5 and 6. So I take care of EVERYONE but myself. I do all my meds etc... But Ineed to put my feet up ..... Good Luck

 

[Ender]

Hmmm..

I dunno, sometimes you just gotta take things into your own hands...and do some alternative stuff aside from what your docs tell you. If i was in your situation..iwould get kinda upset...and do everything in my power to try and reverse it.

Saying this...what other things have you looked into? have you thought about trying GSH? NAC? What about mucomyst, the inhaled form of NAC?

Speaking of foods that are supposed to help with inflammation, DHA, alpha lipoic acid...are both suppliments that help with inflammation and peroxidase destruction from our white blood cells.

As far as excercise..I think it's something that you should really consider. Start slow...and build yourself up. You'll feel better, have more energy...and strengthen your lungs like you wouldn't believe. I think that is probably the most important thing.

One more thing. Stay motivated, and try not to get upset. It's hard to get out of the cycle of feeling down..and feeling like you have no control. Keeo your head up...and if you have more questions, feel free to ask...

Kiel

 

[thelizardqueen]

When it comes to exercise, try walking or a treadmill. Start slow and work your way up. I think one thing that keeps us healthy is staying postive. I know its hard, but its proven that a positive mental state is better for your health. Chin up!

 

[Brad]

Hello Lindsey

You say you have been fighting the infection for a month ( me too )...

I must remind You that after the infection is gone it will take another 1 or 2
months for everything to heal and to clear up........

Just keep at it, I have been way down ( pft's , o2 sats )
an I work my way back up, it just takes time, my pfts are low
at this time as well,

Keep a Good Thought and keep Fighting !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1

 

[anonymous]

I had wrote b4 mother with cf and 2 kids. I want to add. For some reason when I get sick ( every other month or so..) I get sick and need so much steroids!! These steroids are so bad I retain water, get high blood pressure so I need to take a water pill plus a bp pill it's crazy. Does this happen to anyone else???? The iv's do not work unles I am on steroids. The steriods open up my lungs and then comes all the rattle! I would be interested to know if this has ever happened to anyone.

 

[anonymous]

I was going to ask how you do with predisone and if you tolerate it ok, maybe try that for a week.

I second the suggestion of NAC if predisone is not an option.

Finally, what is your dose of Cipro, if you are not on the high dose, 750mg dose, I'd suggest increasing to that. Also, I usually combine another oral anitbiotic with Cipro, like Bactrim. The combo of these, plus the inhaled Tobi work well for me.

Are you taking Azithromyacin? Maybe try adding that to help inflamation.

 

[thelizardqueen]

How long does it take for Zithro to take effect and to notice a difference? I've been on it for a month now.

 

[anonymous]

I have been on Azithro for a year now. I started it during an time when I was sick and I have bounced back from that. It is hard to know if the Azithro helped with that or not.

 

[coltsfan715]

Hi there,

Well what meds I have been on. I am on Zithro all the time 3 times a week - I personally don't notice a difference but that may just be me who knows. The Cipro dose I was taking was 750mg then stopped because my cultures showed that I am growing 2 types of Psuedo (1 type I have had 1 type is new) and MRSA (I have had for years). There was one strand of the Psuedo that was sensitive to the Cipro, so he let me continue my meds until they were done, but it didn't help much. Then I asked about TOBI cause the TOBI knocked the Psuedo out last summer and I was a few months without it. Both Psuedos were sensitive to TOBI so I tried that and just finished the 1 month stint of TOBI and I can tell some difference but not much.
As for NAC or GSH I don't know what that stands for to know what it is. If someone could elaborate- sorry if these things have been talked about on here already. I haven't been on the boards much lately. I am on Albuterol, HyperSaline, and Pulmozyme now (just finished TOBI).
I have tried several vitamins all of which I can not recall at present. I have noticed I haven't been getting as out of breath from working as I did when I first started, but I have been coughing a lot more than before. I personally just wrote it off to the extra/constant activity that I get while I work.
I have been on prednisone before ... last time was about a year or so ago for a month before that it had been nearly a decade if not more. I am diabetic also, so taking prednisone becomes a problem with that. I get severe/crippling headaches. I am not above taking it if it is necessary, but I was hoping to investigate the food thing. I have taken the first step to righting my eating habits by cutting out sodas. I have been 3 days soda free (Ugh ... I swear it is worse than quitting smoking would be for someone lol). I don't give much weight to the soda being the cause of my problems because I have always been addicted to them, but I know they shoot my sugar up and ultimately contribute to the inflammation - so they were nixed.

Thanks for the input guys. I was a bit down the other day. I am climbing my way up the past few days. I just figured I would come here to see what you guys do because if anyone could understand how I am feeling and offer any advice it would be some people on these boards.

Thanks Lindsey

 

[anonymous]

This probably isnt really what you are looking for, its just my expirience. I kept getting sick during my first fall sem of college and ended up having to drop out of my classes and go home. My pfts would drop from the high 50's to the low 30's so they would put me on IV's and they would go back up but not even two weeks after being off of them, they would drop again. Soon they started to not even go back up, I would be on a cocktail IV and oral antibiotics for four weeks straight and nothing. After months of my PFTs staying in the low 30's and nothing helping, I finally started accept that maybe this was my new baseline. I really didnt want to, but I knew there was only so much I could do and started learning about lung transplants. Once I started to get excited about the possibility of breathing in a way I've never felt before, I started to except my pfts being in the 30's.
However my last appt, about a week ago...my pfts were UP! It was amazing, they had improved by 50%. About two weeks earlier I had been on IV antibiotics for 5 weeks straight and I had started the Hypertonic Saline, along with Magestral to gain weight, and TOBI. I'm not sure what it was that helped. I had been on the TOBI a few yrs before but stopped it because it bothered my throat.
I guess I'm just saying that maybe youre just having a bad streak. Mine lasted for a year. Hopefully thats all this is for you, and hopefully it wont last as long as mine did.

 

[Faust]

Oregano oil has done it for me.

 

[anonymous]

Anyone has any experience with medrol? Also is mrsa really bad? I just got cultured with that and really feel sick. I get these terrible bachaches, side pains.. my lungs hurt

 

[Diane]

Lindsey,
Gsh is Glutathione. I know what NAC is also but cannot think of the actual name of it. NAC is thought to help make the body produce its own glutathione, but in studies it didnt appear to help the body produce enough. I started using oral glutathione ( GSH) 4 years ago when i was in a position as you are in now. I felt like i was hanging on by a string and had to try something. I felt i didnt have anything to lose by trying, but everything to lose by not. So tried using oral glutathione and it did make a difference for me. It gave me back my energy that i used to have "pre-cepacia". Having that energy enabled me to get more active which enabled me to improve a bit. I know how scary it is to be at a point where you are afraid you have almost exhausted all options, but you havent. Like someone else mentioned, adding another antibiotic to your cipro might not be a bad idea. I can never take just one by itself....My cepacia would laugh at it. I am on a regimen of 3 at all times rotating them every 2-3 weeks to help avoid resistance. One cool thing about using combos of antitibiotics is the synergistic effect can work way better then just one antibiotic. Its also harder for the bacteria to become resistant to a combo. There are many combos that can be put together, so always know there are other options when you are resistant to most antibiotics by them selves.

 

[anonymous]

To the person who asked the MRSA question.
The antibiotics for MRSA are linezolid (commercially known as Zyvox) or vancomycin. If you haven't had 10-15 days of either or these, then your MRSA has not been adequately treated.

 

[anonymous]

Hi Lindsey,

Have you tried accupunture? I find it to be helpful with boosting my immune system and for my lungs. I have also tried taking garden of life FYI products- the ingredients fight inflammation. I think it works.
I also take ginger drops for inflammation.
Yoga is also great for getting up my PFT's. It allows you to breath steadily during a resting breath or a cardio breath and that right there is a challange for us.

That is all I have tried- Hope it helps-

 

[Faust]

It's all about finding non harmful substances that can help kill off our bugs, and greatly reduce our inflamation. There are things out there that can help. Do some research and ask around. Some of the things others have mentioned do indeed have great possible benefit for CF's. I've said it countless times: There comes a point where you have to take things into your own hands and look into other avenues, and realize doctors aren't gods, and that their approach of nuke/sick/nuke/sick won't work forever (it didn't for me). I was in your same boat, and when I got down to 43% lung function, I was pretty pissed off (more pissed off than scared). I started doing research into more natural substances that kill off bacteria and ease inflamation, and now i'm back to 99% lung function and feel so good, i'm back to work, walking atleast 10-14 miles a shift (about 45-50 miles in 4 days) and feel great. Neither alternative nor conventional medical treatments are 100% of the answer, the key is to use some of each to maximize the greatest benefit to yourself. I didn't personally notice a massive difference in my health with inhaled GSH @ around 800mg a day. But then again I was very healthy then with clear lungs due to OO and activity. Sadly even though I put a ton of stock in OO, there is no silver bullet 100% answer to our problems, but I feel proper supplementation, clearance, and aggressive use of natural substances that can help out symptoms + making correct decisions with regards to our normal conventional medical treatments, is the way to go.


It's not easy though. To properly pursue alternative treatments for your CF symptoms can at times seem costly, time consuming, and a general pain in the rear. But if you already feel like crap, have crappy lung function, and your state of mind is going down hill quick, the only alternative is to stay like that and die, or to look into stuff on your own and see if it helps you. The information is out there if you want to use some mental elbow grease and time to find it.

 

[lilmac7]

Hi Lindsey, just wanted to say my 2 cents worth. I too have been there, to make a long story short in 2002 I was sent to be valuated for transplant only to be told find out that my PFTs were 23% and to add to the mixture that I was seriously under weight (5'4" tall @ only 94-96lbs) to the point that even if they had the lungs right there for me they wouldn't do it because of the uncertainty of me not making it off the operating table! Well that was a wake up call for me, I was determined to prove them wrong altho I was then told that rarely they see people reach such low PFTs and are able to improve to anything significant as much as 10%. Well... I was there for 2 weeks on IV's, I began doing allsorts of stuff to make me caugh up the crap in my lungs and I shovelling food down, hungry or not and I didn't want a feeding tube. I remember setting my watch to eat like every three hours while I was there, tho I wasnt hungry I'd still put it down quickly and go straight to sleep so I wouldn't puke it up. By the end of that 2 weeks I was up to 36% and 110lbs, they told me not much people are able to do that in that let alone in that time frame. I came back home (Grand Cayman, Cayman Islands) and began weight lifting/bodybuilding and since then I've been able to maintain @ 125-130lbs and usually mid to upper 40s PFTs, I know it may not sound like much but before that it was a gradual declining, since then I havent declined other than when I get a flu or an occational infection but I always bounce back. So with that said I do believe the excercise was a big influence on my health and I've been told that it is possible to make what you have perform better than what is on the paper(PFTs I'm refering to), for instance someone that is in their 60s PFTs can get themselves fit and be able to perform and do most things that someone who's say in their 80s, and I personally have proven this I cant tell you how many times people argue with me when I tell them my PFTs are only in the mid 40s.
Anyway good luck and hope this helps

 

[luke]

Lindsey,

When was the last round with IV's? I know your doc want's to wait for a couple of weeks but maybe it is time now. Maybe ask your doc to send your sputum for synergy testing to give you the best shot of getting rid of your current bug. You have mentioned home exercise but have you tried a pulmonary rehab program yet? Maybe having a monitored exercise routine will help you know when to say when so you don't go over or under board.

As for medicine....you mentioned you take albuterol, HS and pulmozyme. Have you ever tried an inhaled steroid? As you know we all react differently to meds but they may help. I would also consider a different bronchodilator or 2. You can take a long acting one like serevent or foridil as well as change your albuterol to Xopenex. just a few things that may help...as for inflammation I use motrin. So long as your kidneys are still in good shape I would give it a try. The studies show it is a promising treatment in kids but I always feel better when I take it so I do.

Have you considered being evaluated for a transplant yet? I can't speak to the specifics but I know many on here can. Maybe it is getting time to consider it. I used to think I would never do it and would just die when it was my time. But, I have changed my mind in the last years and will fight like hell to live for just a minute longer. I just really consider it my last treatment option when nothing else works.


luke