Update on pberggren

[firecracker]

Phil wanted me to let you all know that he is now in isolation at the hospital and will be for a week or so. They have diagnosed him with TB. He wont be able to post for awhile so if you have any messages, feel free to reply here or email me at [email protected] and I will let him know. He doesnt have access to a computer there so far. I dont get a lot of time to call him but I will do my best to pass any messages to him. You may want to also copy him on the emails in case he gets to it before I do.

[Sangye]

Oh Phil, how awful! Do they think that's what has been causing the bloody sputum and lung lesions all these months? Very scary, being immune-compromised. I hope you feel better quickly and gets to go home soon to continue his treatment.

Hugs to you, Phil. Hang in there. :)

(Thanks for posting this, Firecracker. I really appreciate it)

[firecracker]

Sangye, I believe Phil said the doctor said the lung issues are from the TB. He is on three different medicines for the TB and not having any problems taking them so far. They think 4 or 5 days and he should be able to get out of isolation. He sounded pretty good considering. I will pass on your message when I talk to him next time.

[Sangye]

Those are heavy-duty drugs. I think the treatment is 6 months long or sometimes longer. I hope he continues to do okay with it.

[elephant]

Thanks Firecracker for letting us know. Wow TB, so scarey. Get well Phil!

[DEE]

GIVE MY BEST WISHES TO PHIL GET WEKK SOON DEEx

[DEE]

oops sorry maybe should not post when you have just got up meant get well DEEx

[Jack]

That's really bad news, he could do without fighting a major illness on top of Wegener's. Hope he does OK and tolerates the meds well.
Also hope that it is a well confirmed diagnosis and not Wegener's in disguise.

[andrew]

Hey Phil, big man-hug from me. May the meds kick its a** in double-quick time.

[Hammy8241]

The lengths a man will go to just to watch the soccer world cup/Wimbeldon tennis in peace!:)
Hope all goes well Phil and you get out and home soon.

[Kimbangu]

he is a good guy and I am going to keep my fingers crossed for him.

[JanW]

What Jack said. Get well soon, Phil.

[Sangye]

Also what Jack said. :)

[Brooke]

Get well Phil!

[Luce]

Get well soon Phil!

I'm also suspicious of the diagnosis of TB, that's exactly what they thought I had when I was first admitted to hospital.
Still, they can do tests on sputum to find out so hopefully they've got it right and it's not a WG flare.

[Col 23]

Big Cyber hug Phil, wishing you a speedy recovery.
cheers Col 23

[BonnieB]

Get well soon, Phil, the forum just isn't the same without you!

[julia]

Hope you are feeling better soon.

[brocky99]

get well soon xx

[ian anderson]

Phil wanted me to let you all know that he is now in isolation at the hospital and will be for a week or so. They have diagnosed him with TB. He wont be able to post for awhile so if you have any messages, feel free to reply here or email me at [email protected] and I will let him know. He doesnt have access to a computer there so far. I dont get a lot of time to call him but I will do my best to pass any messages to him. You may want to also copy him on the emails in case he gets to it before I do. just to let you know phil im thinkng aout you speedy recovery

Ian

[DuaneHart]

Hurry up and get better Phil. We're still waiting to meet up with you in Rochester!

[coffeelover]

Phil,

I am so sorry about your diagnosis! I am wishing you well and quickly! We love ya!
Lisa

[jola57]

Phil, I am also concerned and hope this passes quickly. Keep well my friend, I will think of you.

[pberggren1]

I just got back home from the hospital.

The doc wants me in isolation at home til at least the end of the month. He wants all the blood work repeated in 2 weeks and to see him a week after that. The hospital gave me masks to take home, 120 of them.

The diagnosis of TB is correct. It came from a look under the microscope.

I have to take these meds for about 9 months.

They are:

isoniazid - 300mg per day

rifampin - 600mg pills x 2

ethambutol - 1200mg pills x 3

I take all the pills at the same time each day. Home Care will come each day to deliver the pills and to make sure that I take them.

It is good to be out of the hospital.

Thanks Jenni for starting this post.

Thanks to everyone for your prayers and concern.


My new doc is awesome. He is from the UK and specialises is Wegs, Nephrology, and Internal Medicine. It is obviously Divine Providence that I went to the ER on June 23. He knows Bacon and Savage and Adu. So I obviously wont be going to Mayo or Toronto now.

God Bless to All,
Phil

[Jack]

Great to hear that you have been sprung! :)

Sounds like you are in good hands, hope you are feeling better soon.

Jack.

[pberggren1]

Thanks Jack!

It's good to hear from you guys again.

[Brooke]

Glad you are in good hands now Phil, take care.

[DEE]

Good news your home nothing like been in your own bed :)
take care of u DEE x

[LisaMarie]

I just got back home from the hospital.

The doc wants me in isolation at home til at least the end of the month. He wants all the blood work repeated in 2 weeks and to see him a week after that. The hospital gave me masks to take home, 120 of them.

The diagnosis of TB is correct. It came from a look under the microscope.

I have to take these meds for about 9 months.

They are:

isoniazid - 300mg per day

rifampin - 600mg pills x 2

ethambutol - 1200mg pills x 3

I take all the pills at the same time each day. Home Care will come each day to deliver the pills and to make sure that I take them.

It is good to be out of the hospital.

Thanks Jenni for starting this post.

Thanks to everyone for your prayers and concern.


My new doc is awesome. He is from the UK and specialises is Wegs, Nephrology, and Internal Medicine. It is obviously Divine Providence that I went to the ER on June 23. He knows Bacon and Savage and Adu. So I obviously wont be going to Mayo or Toronto now.

God Bless to All,
Phil
Phil
Make sure you keep hydrated too....here's to a speedy recovery...Glad you found a dco local

[elephant]

Glad you are home Phil. Keep you in my prayers.

[Luce]

Phil
Good to hear from you and sorry to hear that you have TB. Any idea where you might have contracted it?
What about the wegs, will the TB or the drugs for it have any effect on the disease?

Here's to a speedy recovery

Luce

PS: Out of sheer curiosity, what's your doctor's name?

[talentx7]

get well soon!!

[pberggren1]

I'm not sure if the TB or the TB drugs, which are anti-biotics, will have any effect on Wegs or vis versa. I asked my Doctor that same question and he said that obviously being immuno-suppressed doesn't help things but other than that no one is sure.

My doctor's name is Senyo Tagboto.

He lowered my dose of Pred to 10 and my dose of Cellecpt to 1g 2xd.

The nurse with the TB drugs will be coming soon.

Thanks to All,
Phil

[Luce]

Thanks for the info Phil, I assume he's lowered your doses to try and give you a bit of immune system back to help fight the TB. That must be a dangerous game to play but I guess has to be done in the circumstances.

I hope the TB drugs agree with you and don't have too many side effects.

[berylj]

HI PHIL
i had TB as a child, when wegs was dx 4 yrs ago was put on isoniazid, pyridoxine &co-trimixazole, for 6 mths, to prevent TB recurring, i cant
recall any nasty side effects from these, although i was on high doses pred & mmf as well!!
sounds like you are in good hands, wishing you a speedy recovery,
good luck from berylj

[brocky99]

Hi Phil,

Glad u are home, sounds like u have found a good doctor there hope u feel back to yourself soon

Lisa

[jola57]

You are right Phil, some things are just meant to be. Glad that you found a good and knowlegeable doc. Now just get well soon.

[Lightwarrior]

I just got back home from the hospital....new doc is awesome. He is from the UK and specialises is Wegs, Nephrology, and Internal Medicine. It is obviously Divine Providence that I went to the ER on June 23. He knows Bacon and Savage and Adu. So I obviously wont be going to Mayo or Toronto now. God Bless to All, Phil

Phil,
Wow, I have been off of the site for a few days and I was really scared to open this thread, I am sooooo happy that you are home. I am sorry to hear that you have TB, however it can be managed and I agree with you that it is Divine Providence that you went to the ER and made the connection with this Doc. I am sending you light and energy. I am thinking about you and so glad to hear that you are doing better and that finally all these strange things happening to you make sense and you have a Doc who can understand the ever shifting puzzle pieces of Wegs.
Namaste Phil

[Aunnie]

HI Phil,

I also haVE BEEN OFF FOR AWILE,BUT HAVE BEEN THINKING ABOUT YOU.
SO SORRY ABOUT THE TB,WE ARE SO SUSCEPTIBLE TO MANY THINGS.

Get well soon,and keep us posted.

Aunnie

[pberggren1]

I just got a call from the TB Clinic and I don't have TB. They said it looked like TB under the microscope initially and put me on the TB meds just to play it safe but that the culture did not show the actual TB strain.

So now it is back to the drawing board.

[LisaMarie]

I just got a call from the TB Clinic and I don't have TB. They said it looked like TB under the microscope initially and put me on the TB meds just to play it safe but that the culture did not show the actual TB strain.

So now it is back to the drawing board. Oh Phil...how fustrating...but good in one way....no TB....and No more TB drugs ..right...Will pray that with your new Doc he will get to the bottom of this quickly......

[Lightwarrior]

Good news about the no TB. Are you seeing the Wegs doc you met in the hospital as an outpatient??

[Luce]

I almost hate that I was right because it means that doctors only went by your chest x-ray before making the diagnosis, and they knew you had WG so should have been looking extra closely.

I'm glad its not TB but sorry you had to go through all the meds, I think they have to assume its the Wegs now and get your drug doses upped again at the very least.

[pberggren1]

Luce,

I was told by the TB Clinic that the sputum sample was looked at under the microscope and it looked like TB so they put me on the meds just to be safe. But after it was cultured it showed no TB.

[jola57]

That is good news for you Phil, but the question still is what is happening to make you feel this way.

[pberggren1]

I just got bad news.

A very close friend of mine and also my parents and my brother passed away.

She was only in her 50's. My parents went over to her place for a drink this afternoon and the police were there and notified them. I am still in shock. So don't be surprised if I am not on here for a few days.

[DuaneHart]

Oh, Phil. I am so, so sorry. You and your families will be in out thoughts and prayers.

[elephant]

Sorry to hear that Phil. Your family and friends are in my prayers.

[pberggren1]

Thanks Guys.

I have had a few good cries today.

[DEE]

so sorry Phil .you will be in my thoughts too DEEx

[Jack]

That is terrible Phil.
Don't hesitate to unload on here if you think it might help in any way.

[Sangye]

Oh Phil, I can't imagine.... I'm so sorry for you my friend. Please take care of yourself. Let us know how we can help you.

[Lightwarrior]

I'm so sorry to hear that Phil, my thoughts and prayers are with you and your family.

[pberggren1]

I just found out that another friend of mine passed away. He was a good pool buddy and passed away last Wednesday on my birthday.

[Carly Hedge]

Good to hear. Take care. :)

[Carly Hedge]

Sorry to hear that Phil. Will keep ya in my thoughts.

[Sangye]

I just found out that another friend of mine passed away. He was a good pool buddy and passed away last Wednesday on my birthday.
Phil, no.... I'm so sorry! How awful. So much grief in such a short time. I don't even know what to say to comfort you. Please take care of yourself and let us help you through this terrible time.

[eileenv]

Sorry to hear of this Phil, i wish you well and hope the meds kick in and your back home soon.

[Brooke]

Sorry to hear the terrible news Phil. Prayers are being sent your way, take care and god bless.

[pberggren1]

Thank you all for your support and prayers.

We are still waiting for the lab results of the sputum culture. My new doc talked to the lab boss on Tuesday and asked to make a guess as to what would be the best antibiotic to use in the meantime. He said Bactrim. So my doc put me back on Bactrim 2 tabs twice a day. He said the lab should know what the bacteria is by July 21 so he can put me on a specific antibiotic to take care of it. The lab boss also said that it is in the class of TB and Leprosy so it will be rare and hard to treat.

I saw my new ENT on July 14. He seems very nice and knowledgable. He didn't want to do any type of surgery on me unless it was a last resort. He also said that the sinus wash out that he does is less invasive than what other ENTs do but still usually requires some cutting. He said the cutting or any surgery can trigger a Wegs flare. He put me on bactroban ointment to use in one of my nasal washes and also Pulmicort to use in my nose by using a syringe with a atomiser on the end of it.

I called and e-mailed my Rheumy but have not heard back from her.

[DEE]

hi Phil
glad to hear your getting sorted at last there is nothing like having a doctor that listens to you . undrestands and then gets something done about things
hubby and i spent ages with wg consult on wed am ,asking questions not always getting the answers i wont but just to know he knows what he is doing gives some peace of mind
wishing you all the best , please keep taking care of you DEEx

[elephant]

Hang in there Phil, you will get your anwsers soon!

[Sangye]

Ditto to what Elephant said, Phil. I hope you start to feel better soon. Take care of yourself, friend. :)

[eileenv]

Welcome home Phil, hopefully you will recover better at home, what awsome meds, WOW!!. You must have been feeling pretty rough before you went to the ER. I was intrested when you said about a docter from good old UK, i would like to hear more about him, when your feeling better.

[pberggren1]

What do you want to know about him Eileen? I have an appointment with him on July 21 so I can ask him questions then if you want.

[pberggren1]

I saw my doc today. He called me in to see him. He got the final results of the sputum sample culture. It is called Mycobacterium Abscessus. It is very rare and hard to treat.

I am off to see the Infectious Disease Specialist on Tuesday in Regina. It is about 3 hours away.

My new Wegs specialist says that he will wean me off of the pred and Cellcept slowly doing bloodwork weekly to closely monitor my situation.

He said the most likely treatment for this is 2 to 4 antibiotics taken IV in hospital as in-patient. I asked if I could have day passes and he said most likely.

I will find out more when I see the doc on Tuesday.

My Wegs specialist also said that they will be doing a case study of me to be published in major medical journals because this is so rare and having Wegs as well.

[DEE]

Glad to hear they are getting you sorted at last Phil. hope all goes well on Tuesday DEEx

[elephant]

Phil sounds like your in good hands. Glad you will be in the hospital, you need to be monitored especially taking several antibiotics. Just make sure everyone that comes in the room washes their hands or uses hand sanitizer.
Phil, I know you already know this...but ask the nurse what IV drug they are giving you all the time and the dosage. OK, I am done. :0

[Sangye]

Phil, what a huge relief to finally know the exact cause. Make sure you follow Elephant's advice about checking your drugs, etc....

I know it'll go well for you, and the journal article will be titled "Resolution of Mycobacterium abscessus in Wegener's Granulomatosis." Some people will do anything for a little fame. :D

[Lola]

Phil, I am glad you're seeing an infectious disease specialist and that you'll be hospitalized.

If possible, we would love periodic updates. I will be praying for you. Vicki

[Doug]

Gad! The last thing you need is for your doctors to be excited because you have a case of something so rare, they will write a paper on it! Good luck, Phil.

[julia]

Praying for the best.

[pberggren1]

Thanks everyone for your support. I didn't mean to be famous. Honestly!

[pberggren1]

I saw the infectious disease specialist today. He is very good, kind, compassionate, good listener, thorough, well you get the picture. Anyway he says he wants to make more certain that this is Mycobacterium Abscessus that I have. He wants me to produce 3 more sputum samples to be stained by Acid Fast Bacilli and cultured as well. He said he would call me next week for the results of the staining but probably would not know what the culture results are for another week after that. He is quite certain though that this is M. Abscessus. He said it is very rare. He could only find another case in Western Canada - a few years ago in Edmonton an elderly lady had it and she was taking high dose Imuran and something else like it. He wanted me to have the PICC line put in today as well so I had that done as well. It is a little uncomfortable. I guess I will get used to it. He said the first sample grew the M. Abscessus and the second one did not. He finds that a little odd. That is why he wants more positive proof through more samples. Both of those first 2 samples though came positive by staining. I guess I will just wait for his call next week.

[Sangye]

Now quit being so difficult, Phil. Either grow something or not. :D

You know, like when you were a kid running in and out, and your mom said, "Inside or outside!!" :D :D :D

I'm glad he's a great doc and is being extra cautious before putting you through this regimen.

[elephant]

Phil that is a sign of a great doctor! Phil are you feeling better since you have taken the Bactrim? You will be in good hands.

[pberggren1]

You are hillarious Sangye!

Elephant, actually I am feeling a lot better since I started on the Bactrim again. I am taking 2 tabs twice a day. At the same time I started back on the Bactrim I also cut my Cellcept from 3g per day down to 2g per day and started on the Pulmicort up my nose as well. My nose and sinus symptoms have improved about 95% and my energy level is much greater. So I don't know what to attribute it to.

Thanks Guys

[Sangye]

Wow, that's great!! :)

[DEE]

thats good news Phil :) DEEx

[elephant]

Phil that is great news. So glad that you are feeling better and that the doctor is checking on your sputum culture's again.

[drz]

I have had mixed feelings when they tell me I have some thing really rare or unusual and they start treatment for it and then get results of culture or other tests a few days later and tell me I don't have IT so they stop the treatment. I am relieved I don't have IT (whatever IT is) but wonder why they emphasize IT is rather rare. Maybe it is to help you feel better about them not diagnosing IT sooner or correctly. Isn't WG rare enough? Why do we need more rare complications besides?

[Sangye]

I've been lucky in a weird way. I've had numerous rare complications but they've all gotten dx'ed right away.

[pberggren1]

I just collect rare stuff, that's all.

[Jack]

Yup!
When you have Wegener's, all the rare, unusual and not-likely-to-happen stuff is guaranteed to come your way.

[Sangye]

Yes, Jack is right! Not long before I got sick, I got to see some white buffaloes (not albino) that were brought to live in Arizona. Native Americans consider them extremely rare and quite auspicious. I was already piling up rare stuff. :)

[Doug]

I have had mixed feelings when they tell me I have some thing really rare or unusual and they start treatment for it and then get results of culture or other tests a few days later and tell me I don't have IT so they stop the treatment. I am relieved I don't have IT (whatever IT is) but wonder why they emphasize IT is rather rare. Maybe it is to help you feel better about them not diagnosing IT sooner or correctly. Isn't WG rare enough? Why do we need more rare complications besides?

This is why we need to really, really, really, really, really emphasize to doctors that we are Wegener's granulomatosis patients and remind them as often as it takes to get them to consult with out WG team members as symptoms indicate.

If it is WG specialists taking us through this ride, it seems appropriate to pin them against a wall and ask why? I'm sort of kidding.

I am well familiar with this business of "You have xxx, which is so rare the membership of half the medical societies in the western world haven't a clue what it is, and the other half think it's a brand of automobile. The only reason I have a clue is I saw this episode of 'House'...."

Tell me what you think: Should doctors first determine our symptoms are not WG flaring up, then go after these rare diseases they drop on us, or the other way around? Because we are dealing with an immune system running overtime instead of one not working adequately well enough, medications they give us for the next rare disease may well be working against our specific needs as weggies.

Anyone?!

[Sangye]

I think they always have to rule out Wegs first, since it can affect any part of the body and is quite creative about it.

[JanW]

Dr lebovics was quite clear that for us patients WG flare should be our first thought for almost any medical issue.

[elephant]

Geez if that is the case I better be dialing Dr Langford right now! :)

[pberggren1]

Do you have her cell number. That is one of the first things I ask for when I see a new doc. I get the wierdest look.

[elephant]

No, I don't have her cell...I am kinda shy that way....never ask for their email or cell phone.

[JanW]

email they may give you -- but they might not like you to use it for medical communication (Langford mentioned this specifically, actually -- if it's not encrypted it's not secure and I think it is she that is legally at risk if someone hacks that email...on the other hand, I wouldn't ask for a cell...it's just not my style. But I would only go to a doc with a good doc on call who gets back to me quickly. Thankfully, I've not had to make that call.

[elephant]

Janw do the Wegeners Specialist ever come on this forum and check us out?

[pberggren1]

I heard in a post way back that one doc does.

[JanW]

Don't know about them coming to the forum -- I'm not sure how many even know of its existence.

[pberggren1]

I have told my new doc quite a bit about it. So the Symposium is over now?

[JanW]

Yes, it ended at noon.

[pberggren1]

I sure hope I can go to it in 2012.

[elephant]

You will Phil, and so will most of us. I plan on it and told my sister who has RA, she wants to go with me.

[Cindy]

I am well familiar with this business of "You have xxx, which is so rare the membership of half the medical societies in the western world haven't a clue what it is, and the other half think it's a brand of automobile. The only reason I have a clue is I saw this episode of 'House'...."

Sooooo True!

[Cindy]

I think they always have to rule out Wegs first, since it can affect any part of the body and is quite creative about it.

Sangye, I agree 1000% and I love your use of the word "creative." Very appropriate!

[pberggren1]

Well, we have lost the internet again. So I won't be on everyday. I can only get access at the library and only an hour each day.

So I will not be on here as much.

[elephant]

Sorry Phil, will hear you again tomorrow!

[Lightwarrior]

Well, we have lost the internet again. So I won't be on everyday. I can only get access at the library and only an hour each day.

So I will not be on here as much.

Oh no Phil....What a loss for all of us. We will look forward to your hour a day for now.

[pberggren1]

Yes, I will try and get on here every day, but may not be able to.

[Sangye]

Oh, we're gonna miss you. Well, you'll just have to read and type fast when you do get on. Take care of yourself!

[DEE]

Take care of you Phil will look out for your posts

[pberggren1]

Hey everyone,

I just got out of the hospital. Home Care will be coming by soon to get my IV pump set up. I will basically be stuck in the house for the next 2 months or more. I do have to go out and see the doc and haircut and x-ray and stuff like that. I have a 2 3 hour windows in which I can leave the house. From 1 to 4 pm and 5 to 8 pm. So I am not totally stuck at home. I have to go to Regina on Sept. 8 to see the Infectious disease doc for a follow up. That will be a tricky day and probably exhausting too. I will play that one by ear and if I don't feel up to it on the morning I leave I will just call in and say I can't make it.

I will provide more info later on. I am usually quite exhausted most of the time especially in the mornings and have bad headaches and body aches from all the coughing I do. On my next post I will let you guys know about the drugs I am on and the tests I have to have done.

Take Care and God Bless,
Phil

[elephant]

I been wondering how you were doing Phil. You will get better soon. Nice to see you again. :hug2:

[Cindy]

Hi Phil,
I'm sure it is great to be home. I am interested to here about what you experienced.
Take good care of yourself,
Cindy

[Sangye]

Glad they let you go home, Phil. It's just not good sitting around a hospital that much. Get some rest and update us when you feel a bit better. :hug3:

[elephant]

How are you Cindy?

[misskay]

Good to hear you got to go home Phil... rest up. Update as you can. (((hugs)))

[JanW]

Please take care, Phil and let us know how you are doing when you can.

[Aunnie]

Hey Phil,

So glad you are home..
Try to rest up and feel better..2 months is a long time but then again you are home and away from hospital germs.
Keep us posted when you are up to it.

Aunnie

[pberggren1]

Thank You All,

Yes, rest is definitely my friend.

Sangye, I agree that if I can be at home vs. the hospital home is by far the better place to be because of how germy and dirty hospitals are. One of the resident docs there enjoyed talking to me every day and encouraged me to go home as he was worried I would catch another bug while in the hospital. I tried to leave yesterday but the pharmacy and home care did not have everything ready. Actually home care doesn't have everything ready either. I don't have a pole yet for the bags and pump and I don't have secondary lines either. They are supposed to come back in about an hour so I hope they have that stuff then.

[DEE]

glad your home again Phil hope they get everything sorted for you soon
take care of u DEEx:hug2:

[pberggren1]

These are the drugs I am on:

They are all antibiotics and very strong.

Amikacin: 550mg in 100ml Saline twice a day by IV

Cefoxitin: 2g in 100ml Saline every 4 hours by IV

Clarithromycin: 500mg tab twice a day

I generally feel wiped from these antibiotics as well as from my coughing spells. The coughing makes my head ache real bad especially around my eyes and nose and also makes my legs very sore and weak not to mention a sore chest and throat.

Thanks again everyone for your continued support.

I also bought a nebulizer for saline soluting to help loosen up the congestion in my lungs and bronchials. It sure helped in the hospital. I am using right now as I type.

When the home care nurse came at 4 I had a mild coughing spell. And when she came again at 8 I had an even worse spell and decided to keep what I coughed up in a small glass about 3 ounces. The nurse what quite shocked when I showed her the blood I had coughed up in less than an hour. I have my pole and secondary lines now so it is much easier to operate.

I look forward to catching up on the posts that I have missed.

[elephant]

Phil why are you coughing blood? Is it Wegs or Infection? Your a real trooper!:hug1::hug3::hug2:

[pberggren1]

It is a rare lung infection called Mycobacterium Abscessus. It is so rare that my Wegs doc never heard of it and called his Pulmo buddies back in London and Birmingham and they never heard of it either. It is related to Leprosy and TB but much harder to treat. We only have one shot at curing it or knocking it out. So if these antibiotics don't work it may be bye bye Phil.

[Jack]

Hang in there Phil. Wegener's hasn't got you yet and neither will this!

[pberggren1]

Hang in there Phil. Wegener's hasn't got you yet and neither will this!

I know Jack. I am still staying positive. And with all of your help and support I will beat this!:thumbup::thumbsup:

[Fran]

Hi phil - Been reading about you - sincerely hope you will be better really soon http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[pberggren1]

Hi phil - Been reading about you - sincerely hope you will be better really soon http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Thanks Fran. I really appreciate that.

[Sangye]

Phil, those are powerful drugs and are going to knock out that infection. You'll be okay. I bet you're exhausted with all that coughing. I heard just a little during our phone conversation last week and it sounded like you were really working. I'm glad you have the nebulizer.

Also, do you have a HEPA air purifier running in your house? You should be in very clean air to make it as easy as possible on your lungs.

[elephant]

You will beat this Phil, I was hoping it wasn't that infection! Your Batman you will conquer this bad infection!

[pberggren1]

I don't have a HEPA filter in the house. We don't have a forced air system in the house and I am mostly in the basement.

Sangye, do you strongly suggest I get one?

[Sangye]

Yes I do. I have one and run it non-stop. I don't notice that the outside air is bad until I get home and can tell how clean the air is in my basement. And I have a major black mold problem. Without the HEPA I'd be in trouble.

You can get a good one for a medium-sized room for about $100 USD. Make sure you get one that says "True HEPA." If it says HEPA-like or anything else, it won't filter the small particles like mold and bacteria. With your immune system working so hard to fight this bacteria, I think it's a good idea to cut down as many other microorganisms and air particles as you can.

[Sangye]

This is the HEPA air purifier I have. It's not that loud and it's lightweight--easy to carry to another room.
Honeywell True HEPA Air Purifier with Remote Control - 17005 at The Home Depot (http://www.homedepot.com/h_d1/N-5yc1vZ1xh7/R-100014827/h_d2/ProductDisplay?langId=-1&storeId=10051&catalogId=10053)

[DEE]

hi Phil
ive been sleep most off the day ,one of my wipeout days
needed to say glad to see you back hope your treatment goes well thinking of you take care DEE:hug3:

[pberggren1]

This is the HEPA air purifier I have. It's not that loud and it's lightweight--easy to carry to another room.
Honeywell True HEPA Air Purifier with Remote Control - 17005 at The Home Depot (http://www.homedepot.com/h_d1/N-5yc1vZ1xh7/R-100014827/h_d2/ProductDisplay?langId=-1&storeId=10051&catalogId=10053)

Thanks Sangye. I will go look for one tonight or tomorrow.

[LisaMarie]

It is a rare lung infection called Mycobacterium Abscessus. It is so rare that my Wegs doc never heard of it and called his Pulmo buddies back in London and Birmingham and they never heard of it either. It is related to Leprosy and TB but much harder to treat. We only have one shot at curing it or knocking it out. So if these antibiotics don't work it may be bye bye Phil.
Phil....keep strong ...it is a wicked infection.......take your meds and rest...keep hydrated....please keep us updated......and take care.....also get a hepa filter air purifer for the room you are in..sometimes insurance will cover it take care and God Bless

[Sean48]

Best of luck with you Phil....I hope and pray all works out well for you, You have a long drive to Regina. When my sister was having chemo and they would usually go up the night before, (I think mostly so she could hit the casino :-)) that way she wasnt so tired the day of. Would that be something you could do?

[Sean48]

Hi Phil....When I was in the hospital the nebulizer really helped me too. I had it every 4 hours for days. I called it my bong (for those of you who lived in the 60/70's) It made me feel better. I coughed up so much dark and red phelm for so long I forgot it wasnt supposed to look like that. If I only knew then what I know now. I just thought it was a bad cold or infection. I am so glad you are being taken care of and able to be home. I can't imagine what it is like for you. Once is enough to have to deal with this......You deserve a very long remission for sure.

[Sean48]

It is a rare lung infection called Mycobacterium Abscessus. It is so rare that my Wegs doc never heard of it and called his Pulmo buddies back in London and Birmingham and they never heard of it either. It is related to Leprosy and TB but much harder to treat. We only have one shot at curing it or knocking it out. So if these antibiotics don't work it may be bye bye Phil.

Oh my goodness Phil dont talk like that.......They will find the right medicine to fix it.....

[brocky99]

Take care of yourself phil, I am sure the anti biotics will work, then we can say hello to a new phil xx

[pberggren1]

Best of luck with you Phil....I hope and pray all works out well for you, You have a long drive to Regina. When my sister was having chemo and they would usually go up the night before, (I think mostly so she could hit the casino :-)) that way she wasnt so tired the day of. Would that be something you could do?

That's right. I forgot that your sister lived in Lafleche. I forget which state you are from though.

[jola57]

Poor Phil, I do hope so much that the treatment works well and you will get better soon.

[pberggren1]

I sure hope so too Jolanta. Everyone is worried about me, even my doctor is quite concerned.

[Fran]

Hola Phil, Como estas hoy ? ( I read somewhere you studied Spanish - same here, to keep my mind occupied when I was at a bad stage - but I have fogotten a lot - must pick it up again).

I hope you are feeling a lot better today - I think I read somewhere that antibiotics can cause depression, so be aware of that and just think they are making you better and very soon you'll be strong again. http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

[elephant]

We are all here for you Phil! :hug3::hug2::flapper:

[Sangye]

(LOL-- How did we ever communicate without the new smileys? :w00t::thumbsup::laugh: )

One day at a time, Phil.... Whenever my mind wanders into the future what-if's and worries or into the past reliving all the traumatic stuff and "Omigosh I could have died!" times, I remind myself "You're still here." It's a good way to center yourself in the present. None of the other thoughts are relevant.

[Jack]

I'm convinced that the only way to deal with this thing is to live in the present, it minimises the number of problems clamouring for attention and gives you a warm, slightly detached feeling. :cool1:

[pberggren1]

Hola Phil, Como estas hoy ? ( I read somewhere you studied Spanish - same here, to keep my mind occupied when I was at a bad stage - but I have fogotten a lot - must pick it up again).

I hope you are feeling a lot better today - I think I read somewhere that antibiotics can cause depression, so be aware of that and just think they are making you better and very soon you'll be strong again. http://www.wegeners-granulomatosis.com/forum/images/editor/smilie.png (javascript://)

Muy bien, gracias.

[DEE]

thought id better answer you on here Phil it has taken six years at uni to become an architect :smile1:

[Cindy]

Hi Phil, You hang in there. After so much for so long you are expected to feel a little depressed but you are doing great! It's not fair that someone with WG gets another weird infection. But it sounds like they are on top of it. Like everyone has said "focus on the present" :thumbup:

I'm off to UCLA - more test.

[elephant]

Good luck Cindy! Lets know how it went.

[jola57]

Phil, keep your spirit up, sending you many weggie gentle hugs

[drz]

I sure hope so too Jolanta. Everyone is worried about me, even my doctor is quite concerned.

I hope this means he is working extra hard to treat you right. The extra care and attention may be just what you need.

[jola57]

Keep us informed how you are doing every day, we can all beat it away, just keep being as positive as you can. If need inspiration keep going to the funny or weggs pictures threads. They will sure make you smile.

[pberggren1]

I hope this means he is working extra hard to treat you right. The extra care and attention may be just what you need.

Ya, my doc is very good about returning calls. He usually calls back by 4 or 5 pm.

[pberggren1]

I really had a bad night and morning. I had really intense pain in my head and face mostly around my left eye and nose and under the eye and above and behind. When the home care nurse came in she said she would call my doc and see what he thought I should take. She called back later and said that he said to try Tylenol 1s with codiene. I took 3 of those with an ice pack and then blow dryer and it took the edge off. I still have a little pain but it is much more bearable.

[elephant]

Phil, I am so sorry you are having so much pain. Feel better tomorrow. :hug2:

[DEE]

Phil thinking of you take care DEEx

[Jack]

Phil, do you know what is causing this pain? It sounds very much like the sinus pain I used to get when having a flare and to a lesser extent when I had sinus infections.

[Sangye]

I'm concerned about Wegs, too. I hope the pain is gone today and it's just a side effect of the meds. Hugs to you, Phil.

[Cindy]

Phil, do you know what is causing this pain? It sounds very much like the sinus pain I used to get when having a flare and to a lesser extent when I had sinus infections.

Phil, I hope you are feeling better today. I'm with Jack, do you have a good sinus doctor who also knows about WG?

[JanW]

Add me to the people who are concerned about you, Phil. Have you reported this to your WG doc?

[pberggren1]

Thanks guys.

I am feeling better this morning. I still have the sinus headache but it is better than yesterday.

[elephant]

We are just looking out for you Phil, and with you being on all those strong antibiotics we have too have triple eyes watching you. :flapper:

[brocky99]

Was great chatting to you tonight phil on facebook hopefully will get to do it again soon like i said on there look after yourself and take care and hope you feel better and pain free soon :biggrin1:

[pberggren1]

Was great chatting to you tonight phil on facebook hopefully will get to do it again soon like i said on there look after yourself and take care and hope you feel better and pain free soon :biggrin1:

Thanks Lisa. It was nice talking to you as well.

[pberggren1]

Well, I saw my doc today and here is the news:

My last sputum sample came back totally negative! YEEEEEEEE HAAAAAAAA!:thumbsup:

And now comes the interesting and difficult part.

Because this disease is so rare and the drugs used to treat it are rarely used it makes it quite difficult to make decisions on how to treat it.

My doc said the Amikacin can be given by nebulizer but has never been tested or given that way before to his knowledge. So if I decide to take it this way in the future I will be a guinea pig so to speak.

He said he would not feel comfortable with me just being on the Clarithromycin alone come the end of October. He would want to see me on at least 2 drugs like the Amikacin as well.

The trouble with using the Amikacin by IV is that it is very toxic to the kidneys and ears. And by Nebulizer we are going down the unknown road. So this may be a difficult decision.

There was another drug in which susceptibility testing was done on - I forget the name - and he is going to ask the Infectious Disease doc about tomorrow as well as the Amikacin issue and another drug - that I can't remember the name of either - but no susceptibility testing was done on that.

The doc encourages me to see the ID doc on Oct. 7 to see what her opinions are on these matters and why she thinks that way. He said in the end it will be my choice of what drugs to use long term.

I see him again on Oct. 6. My ANCA is still negative and my ESR is 54 down from 65 and everything else is good as well.

So hopefully this is a trend and I don't have to be on IV meds too much longer after the end of October. But if I do then it is probably for the better.

[Sangye]

Whooyaaa!!! That's great news, Phil. I'm sure the ID doc will figure out what's best for you. How's your cough?

[pberggren1]

Whooyaaa!!! That's great news, Phil. I'm sure the ID doc will figure out what's best for you. How's your cough?

Actually cough is getting better too. The episodes are becoming less frequent and the episodes themselves do not last as long. And the amount I am coughing up seems to be less as well.

The doc was also quite concerned about how I was feeling over all and if I thought that I was improving from a symptom point of view. I told him that I did feel I was improving overall. I said I have good days and bad days, but overall if felt like I am improving.

I might see him tomorrow when I am at the hospital and see if he has talked to the ID doc yet. I want to ask him if he thinks it would be too risky to start with the nebulizer of Amikacin and drop the IV form. I susspect that he will say, as well as the ID doc, that it is will be best to stay on the IV form for another month.

[elephant]

Phil, so glad to hear you are negative, just be patient with the antibiotics you will be off them soon.

[pberggren1]

Phil, so glad to hear you are negative, just be patient with the antibiotics you will be off them soon.

But I will try and stay positive.

[Sangye]

No! Stay NEGATIVE, Phil. Negative! :laugh::laugh:

[elephant]

Phil, I am telling you my eyes are so crazy it makes my mind crazy....I meant positive! So sorry. I have one good eye and one bad eye and they are fighting each other...

[Sangye]

Your bad eye was right, Elephant. We want negative cultures from positive Phil. :flapper:

[pberggren1]

Your bad eye was right, Elephant. We want negative cultures from positive Phil. :flapper:

Now I am confused as to what I am supposed to be.:huh::confused1::unsure:

[Jack]

Positive about being negative. :unsure:

[elephant]

Yes that is a good one Jack....and Sangye and Phil...keep me laughing on the floor...but not rolling..it hurts my back.:flapper:

[Sangye]

LOL-- Phil, no wonder you're confused. You've got a bunch of people on pred giving you directions. :blink:

[Cindy]

Phil - great news!!!! How about a new picture with a smile :biggrin1:


Phil, I am telling you my eyes are so crazy it makes my mind crazy....I meant positive! So sorry. I have one good eye and one bad eye and they are fighting each other...

elephant, I was at UCLA yesterday and picked up some old test photos. Check this out! CRVO on June 8th that lead to me getting diagnosed.

607

[elephant]

Thanks Cindy, I am unable to get the" attachment 606". :mellow:

[andrew]

Elephant, are you getting any kind of error? Works good for me :)

[pberggren1]

Phil - great news!!!! How about a new picture with a smile :biggrin1:



elephant, I was at UCLA yesterday and picked up some old test photos. Check this out! CRVO on June 8th that lead to me getting diagnosed.

607

what is that Cindy?

[Cindy]

Hi Phil, My left eye. It is a photo of the CRVO that caused me to go funtionally blind in that eye but lead the doctors to diagnose me with WG. I gave up some vision to save some life - a fair trade.

[pberggren1]

Hi Phil, My left eye. It is a photo of the CRVO that caused me to go funtionally blind in that eye but lead the doctors to diagnose me with WG. I gave up some vision to save some life - a fair trade.

What does CRVO mean?

[Doug]

http://www.google.com/url?url=http://www.google.com/health/ref/Retinal%2Bvein%2Bocclusion&rct=j&sa=X&ei=_AGeTNXPCsmenwfCxPHHDQ&ved=0CB8Q4wEwAA&q=crvo&usg=AFQjCNHR0gxd78PxZFaP7-O-Ls3d4V2q-Q

[I am a foe of abbreviations and jargon when clarity is lost in communication, Phil. We all do it. Especially people like us, who all have medical histories from hell, with lots of polysyllabic drugs, symptoms, outcomes, protocols, tests, etc., involved at every step. I do it. I'd not heard of CRVO either, so post this just in case you and I aren't the only ones. I was at the website anyway, so it was simple enough to copy and paste the link. The way we wander on this website, it is important to have information like this as close as possible to the reference, which, in this case, is the fact that Cindy was diagnosed with WG because of the condition for which CRVO serves as a convenient and simple substitute for a longer phrase that medical practitioners and others in the know prefer not to say everytime the topic comes up.]

[Cindy]

Central retina vascular occlusion. Blood vessels in my eye around the optic nerve burst and I can no longer see with that eye except for some peripheral vision (which I very happy to have).

Phil, you do not have eye involvement?

[pberggren1]

Central retina vascular occlusion. Blood vessels in my eye around the optic nerve burst and I can no longer see with that eye except for some peripheral vision (which I very happy to have).

Phil, you do not have eye involvement?

I am quite sure I have never had eye involvement. I have been seeing an opthamologist yearly for the past 7 years and nothing has popped up. But the last few weeks my eyes hurt and are red in the mornings, but I am sure it is not Wegs related.

[pberggren1]

Well here is the latest news:

I saw my Wegs doc on Wed and the Infectious Disease doc on Thurs.

The infectious disease doc wants me to try using the Amikacin by IV after Oct. 18 on Mon, Wed, and Fri, once during those days at a much higher dose - about 1750mg vs. 550mg I am dosing right now twice a day, everyday.

Now the problem with Amikacin is that when dosed by IV it can be quite toxic to the kidneys and ears and cause damage to them. I would not want to have to go on dialysis or have kidney transplant or lose more hearing. But no matter how we dose the Amikacin, using it long term by IV, like 6 or 12 months or more, is going down an unknown road.

But my Wegs doc is worried about using it long term by IV because of the toxic effects to ears and kidneys. He would like to keep the option open or at least me considering to nebulize the Amikacin long term. But this is even more of an unknown road because it has never been done before.

So I have a tough decision to make in the next week or so. I will talk to my Wegs doc again today or next week about this. The infectious disease doc said that we could possibly try nebulizing the Amikacin in about 6 months or more if things are looking really good.

All my bloods are looking much better and I am feeling better as well. I am a little stressed out with this decision I have to make. Any input would be greatly appreciated.

[elephant]

Phil can you get a second opinion ( infectious disease) to see if they have any insight. How about a infectious disease doctor in the US ( well known one)...maybe they have experience in the nebulizer and can give you some insight. Maybe your infectious disease doc can call a doc in the US, you never know.

[Sangye]

Phil, I agree with Elephant. You need input from a major ID specialist on this one. The risk is much too high to do it on one doc's assessment. Since you have good rapport with your Wegs doc, ask him what to do.

[Brooke]

Hi Phil, yes that would be a hard decision to make! I too agree with elephant and would try to get another opinion. Did they say any side effects that they may be worried about with the neb or just completely have no idea since it has not been done?
Good luck to you!

[Cindy]

Hi Phil, Wow! That's a lot to deal with. And of course a second opinion is needed but I just want to tell you that I am thinking of you and what you must be going through.

[marta]

Hey Phil,

Holy moly. That's a plate-full. A second opinion sounds like a great option. It's always good to have more brains working on the same problem, and I know in the end you will make the best decision. Take care of yourself buddy. I've been wondering where you've been the last few days. I'm very happy to hear that at the very least you're feeling better physically. You're in my thoughts and prayers.

[pberggren1]

Thank you all for all your support and prayers.

I talked to my doc this morning and he is already in the process of trying to contact a doc that wrote a paper on M. Abscessus on uptodate.com and another doc or docs that treated 12 cases of M. Abscessus in the some community. He said he will call me as soon as he finds out any info.

He also said that he does not agree with going 3 times a week using high doses of Amikacin. He said that is too risky for the kidnyes and ears and the spikes and troughs are too high and low. He would rather see me continue on the way it is now because that way the peaks and troughs are not so high and the blood levels remain fairly consistant.

He also did not agree that I should not wear a mask when going out. He said frist of all it may be non contagious but it gets spread somehow and if someone else gets it in the community then they will be even harder to treat than you. And secondly you do not want to catch any other bug or virus, that would really makes things complicated.

[elephant]

So happy to hear that your doctor is looking into this more. Your safety and health are number 1 !!!

[jola57]

With everything that is happening, it is so good to know that you have such fine and caring team looking out for you.

[Sangye]

Very glad to hear this, Phil.

[brocky99]

Hi Phil hope u ok not spoke to you on faebook for a while i have been busy trying to sort house now glyn left. Hope your doc comes back with some info soon. Speak to you soon hopefully.

Lisa

[pberggren1]

Here's what happened today:

I went to the hospital to drop off an extra sputum sample to be tested for fungal culture and to pick up a couple new nebulizer masks. I knew my ENT was there so I got into see him and had a hearing test done. I know the last couple of weeks or so my hearing is getting worse. The test confirmed that I have lost about 20db straight across the board in the last month since my last test. The ENT looked in my ear canal at my ear drums and said that it looks like there is most likey fluid behind both ear drums. I also told him that I have been having sharp pains in my ears the last 3 weeks along with weird pains around and in my ears when swallowing. He said that sounds like fluid in the ears. I forgot to ask him about Vestibular PT like what Sangye does. He asked me if I tried plugging my nose and gently blowing. I said I haven't tried it because I am afraid to. He said he understands that but encouraged me to try but very gently. He said it might force air into the eustatian tubes and then the fluid will drain out. But because of previous damage due to Wegs the tubes may be non functional and not drain the fluid out. He gave me 2 options: 1. To try a nasal decongestant spray like Dristan or Otrivin for a couple of weeks to see if that helps. And 2. To put tubes in ear drums to let the fluid drain out of them. The latter is a little riskier. I said I would try the nasal spray first. I also asked him if there is any way to tell if it is fluid that is causing this hearing loss or the Amikacin. He said there is no way. But if the hearing improves after using nasal spray or tubes then obviously the loss was conductive and not sensorineural. I also discussed using Amikacin long term with the ENT like dosing 3 high doses a week. He said the high doses scare him because they cause high peaks in the blood that can further damage the ears and kidneys.

So I have a question: Is there a natural decongestant to use in a case like this, SANGYE?


My Wegs doc also called me this afternoon and said I now have 5 sputum samples in a row that are negative under microscopy and 3 that are negative under cultures and my last ANCA from last week was still 4 so we dropped the Cellcept to 750mg per day. So that is good news. He said he also heard back from one of the top lung docs in the US that wrote a paper on M. Abscessus and he said that the Amikacin can be dosed high like that 3 times a week as long as the blood levels don't go above 20 and that he did not favour nebulizing it. But he did say that Tetracycline might be an option to dose IV for long term as well and also consider dosing the Cefoxitin longer as well. I see my doc again on the 20th so we will have lots to discuss then and make some tough decisions. I see my other ENT on the 25th in Saskatoon, 3 hour drive away. My Dad will drive me up for that one.

So any input here is greatly appreciated.

[Jack]

I also have hearing loss due to fluid and can clear it for a very short time by pinching my nose and blowing or sometimes even by just tipping my head to one side. My nose is clear so there is no question of congestion to my way of thinking and I am assuming that the problem is caused by damage or inflammation of the tubes due to Wegener's. Things improve with higher doses of Pred, but of course I don't want to go down that route.
I was offered drainage grommets by the ENT, but I believe that they tend to come out after a short time and I'm not in good condition to risk non urgent anaesthetic. So - I just live with it. :smile1:

[eileenv]

Wishing you all the best Phil and glad things are slowly getting sorted. Take care:thumbsup:

[elephant]

Phil , it could be damage from the WG or WG still there? It can also be hearing loss from the antibiotics. Phil when my WG was active I was completely deaf in the left ear and half way deaf in the right ear...this was in Jan 2008. The ENT told me the same thing hold my nose and blow air to get the fluid out.. It did not work. At this time I was not diagnosed yet with WG and the ENT was so arrogant! I went to another ENT and he gave me prednisone( taper) it helped but it came back ( fluid in ear). He talked about the ear tubes too. Then finally by July 2008 I was diagnosed with WG and was put on 60 mg of prednisone and my kidney transplant drug increased ( cyclosporine). The high dose of prednisone helped, but it started up again once the prednisone was decreased to 5mg. But my WG was not controlled.
So Phil, I would try the meds the ENT recommended and make sure that it doesn't cause any interactions with your antibiotics.

[Jack]

Decongestant sprays always worry the hell out of me. I had some very bad experiences with them in my pre diagnosis days and suffered terribly from rebound reactions leaving me worse than when I started.

[Brooke]

Yay Phil for your sputum samples being negative, that is great!!! I am not sure on any natural decongestants, maybe Sangye will have some ideas. Only thing I can think of is trying a hot and steamy shower, sinus rinse, Vicks Vapor Rub, and maybe a steamer at night in your room? Maybe one or more of those would help.

[Sangye]

Phil, that's great news about your sputum being clear! Really bodes well for you. I'm so relieved to hear your doc spoke with a top lung doc who knows M.A. Now you're cookin' with fire. :w00t:

As far as a decongestant.... My first question is why would your ears be collecting fluid? I think you said they had lowered your pred along with the Cellcept recently? Wegs can be stirring, even if your labs look okay. I think this is a good question for your Wegs doc. I don't know of a good natural decongestant for a Weggie. (There are lots but they either interact with our drugs/ conditions or they boost the immune system.) I also agree with Jack about rebound effect--a known side effect of using pharmaceutical decongestants. Maybe try them very sparingly at first?

[elephant]

Phil, I forgot to add one other thing...I tried every nasal spray ( all prescription and non prescription), none of them worked! My Rheumy and three ENT's wanted me to take them and I did and I kept telling them they don't work. The reason why these products did not work for me, because my WG was active. So once my WG was heading towards remission my ears got better just by the medicines ( oral) that I was taking. Many of the over counter meds are temporary and can elevate your blood pressure and heart rate.

[Brooke]

Sorry, I was thinking decongestant for the nose not your ears!! I suppose the things I listed would not help for that.

[elephant]

Actually Brooke some of those prescription nasal sprays for the nose helps the eustachian tube too.

[pberggren1]

Decongestant sprays always worry the hell out of me. I had some very bad experiences with them in my pre diagnosis days and suffered terribly from rebound reactions leaving me worse than when I started.

I hear you Jack. I know for sure that long term use of these can cause damage to the sinus lining.

[pberggren1]

Phil, that's great news about your sputum being clear! Really bodes well for you. I'm so relieved to hear your doc spoke with a top lung doc who knows M.A. Now you're cookin' with fire. :w00t:

As far as a decongestant.... My first question is why would your ears be collecting fluid? I think you said they had lowered your pred along with the Cellcept recently? Wegs can be stirring, even if your labs look okay. I think this is a good question for your Wegs doc. I don't know of a good natural decongestant for a Weggie. (There are lots but they either interact with our drugs/ conditions or they boost the immune system.) I also agree with Jack about rebound effect--a known side effect of using pharmaceutical decongestants. Maybe try them very sparingly at first?

Thank you Sangye. I may try the pharma decongestant sparingly for a few days to see what happens. I see my Wegs doc tomorrow morning again at the hospital so I will run that by him as well.

[Sangye]

Phil, the rebound reactions Jack is speaking about don't necessarily cause damage (but who knows in a Weggie). The problem is that they cause the very thing they treat when the drug wears off. Sinus and nasal inflammation actually increase. This makes the person use the drug again. It doesn't take long to become dependent on the drug--not psychologically, but physiologically. If you stop, the congestion is far worse than before you started using the drug. The only way to get off the drug is to tough it out until your body adapts again.

This is why when I suggested to use it very sparingly, I meant VERY sparingly! Nothing approaching regular or daily use. Please discuss this with your Wegs doc of course. Just wanted you to have the info going into your conversation.

(BTW Migraine drugs like Imitrex have the same rebound reaction. They cause migraines and patients quickly get hooked on the drug.)

[pberggren1]

Phil, the rebound reactions Jack is speaking about don't necessarily cause damage (but who knows in a Weggie). The problem is that they cause the very thing they treat when the drug wears off. Sinus and nasal inflammation actually increase. This makes the person use the drug again. It doesn't take long to become dependent on the drug--not psychologically, but physiologically. If you stop, the congestion is far worse than before you started using the drug. The only way to get off the drug is to tough it out until your body adapts again.

This is why when I suggested to use it very sparingly, I meant VERY sparingly! Nothing approaching regular or daily use. Please discuss this with your Wegs doc of course. Just wanted you to have the info going into your conversation.

(BTW Migraine drugs like Imitrex have the same rebound reaction. They cause migraines and patients quickly get hooked on the drug.)

WOW Sangye. I did not know this about these medications. Thank you very much again for your insight and knowledge.

[Jack]

The situation Sangye describes is exactly the position I found myself in after using the spray for a couple of weeks. Its effects lasted for shorter periods of time and I could not breath at all if I stopped. I took myself off it "cold turkey" and then reserved it for special occasions such as going out when I felt that I needed to breath. :wink1:

[pberggren1]

Thanks Jack. I have decided not to take it all right now. I'll probably see my doc this morning at the hospital so I will run it by him then.

[pberggren1]

Well, I have decided which antibiotics I am going to take and how I will take them for the forseeable future.

I have decided to quit the Cefoxitin and continue with the Amikacin and dose in 3 times a week, MWF, at a high dose of 1750mg in 250mL of saline dosed over an hour. I will also continue with the oral Clarithromycin. I hope this regimine works as I will be able to get more regular sleep and might actually be able to get to sleep by 11pm because I will not be hooked up so constantly to the IV pump.

I start the high dose of Amikacin on Monday morning and then go to Saskatoon to see my other ENT. My Wegs doc signed off on the new med orders this morning for me.

[elephant]

Hope it all goes well with you Phil. You need your sleep. Let us know how it went Monday with your first infusion of Amikacin.

[Sangye]

I hope you continue to get better Phil. :smile1:

[pberggren1]

Thank You Sangye.

[eileenv]

I hope Phil all goes well for you and you continue to make progress with you new medicaion. Take Care.

[chrisTIn@]

I hope so too. :smile1:

[Jack]

I've just been looking over the earlier posts on the thread and it has been a long journey, let's hope it is working its way to a happy conclusion. Things seem to be going quite well at the moment. :)

[DEE]

hope things go ok for you tomorrow Phil :thumbsup:

[Geoff]

Big Day Ahead Phil, We are all wishing you the best with your new drug regime.

[pberggren1]

I go pick up my new dose in about 15min.

[janNaz]

Phil,
Hope all went well for you today. Sounds like a very busy day...try to get rest. Take care!

[pberggren1]

I saw my other ENT, Dr. Mia today in Saskatoon.

I almost cancelled and did not go because I was so tired from only getting 2 hours sleep and my back, neck, and shoulder were very stiff and sore. I tried heat packs through the night and then I bit the bullet and took 4 Robax Platinum at 4am and they kicked in shortly after.

The ENT scoped my nose and ears. He said there may be fluid behind the ear drums but it looks more long term to him like several years, like from the Wegs. He said tubes and decongestant nasal sprays are always a last resort. I asked him what he thought of my choice of dosing the Amikacin like this. He said that if I felt I was getting worsening hearing or kidney damage he would stop dosing it by IV and would try to inhale it.

I bought a honey rinse kit from him for my nose. He also suggested to try putting the Pulmicort right in my nasal rinse and also trying Johnson's baby shampoo in the rinse too to loosen up the crusties.

I also had a hearing test and it is not any worse from last Wednesdays test.

It was kind of neat to see my ear canals and drums on a color TV and to see my nose as well. The inside of my nose still is like raw hamburger and has been mostly like that since I firts got Wegs.

I asked him if it is possible to get the nasal wash up into my ears through the eustachian tube when I use my Waterpik to do the nasal rinse. He said yes. I am going to try and be more carefull.

He also said to stop using a Q-tip to clean out my ear canals. He said I could nick the sides of the ear canals and cause damage, and any new wound could bring on Wegs.

I asked him about getting taste and smell back and he said most of his patients have had the most success with Pulmicort. So I will try that in my nasal rinse tomorrow.

[elephant]

Phil, thanks for the information. You have a very good ENT!

[DEE]

youm had a busy day hope you can get a rest now DEEx

[marta]

Wowser!!! That's a brainfull in one day. What sticks out is "Johnson's Baby Shampoo in your nasal rinse" - really? You're a tougher man than me my friend. That just freaks me out.

Take care Phil. Rest and recover and then take it on like you always do. Give'er!

[jola57]

I hope you are resting after an eventful day. Thanks for all the info Phil. Same here with my ears, long term hearing loss because of Wegs without getting better in future. Ugh, you are right Marta, I too wouldn't have the guts to do the rinse. Let us know how it goes Phil.

[Jack]

That is one hell of a cocktail to squirt up your nose! Honey and shampoo? :w00t:

[Sangye]

I don't like the sound of putting shampoo up your nose. Just because it's "baby" shampoo doesn't mean it's free of chemicals that would be absorbed by mucous membranes. Ick.

[Jack]

Warm saline always did the trick for me. It is hard to see the need for shampoo and it does sound a bit questionable.

[Brooke]

That is some interesting information Phil, you will have to let us know how it works. Are you talking pulmicort the medicine for a nebulizer?

[LisaMarie]

Phil
that is quite a cocktail....i would use minimal amount of the baby shampoo ...we use it to get crusties off of eyelids when patient's eyes get matted...also make sure the honey is fron your area...i read somewhere it works better if it is from your area...my low oxygenated and pred brain won't let me remember any more than that sorry...and if i were you i would stay awat from the water pik for a bit...just for kicks and giggles try something else like a nettle pot or squirt bottle......not sure what honey would do to your ears?...just a suggestion

[Sangye]

Lisa Marie, the water pik is not high speed like for teeth. It has a special attachment for this purpose and ENTs recommend it.

[pberggren1]

I will only use the Baby shampoo in my squeeze bottle rinse if I find the crusties and not coming loose using the Waterpik to irrigate and rinse.

Sangye is right Lisa Marie. The Waterpik is recommended by ENT to rinse out the nose.

The honey in Manuka honey from New Zealand and is already prepackaged in bottles that I add the water to.

I was taking the Pulmicort before by nebulizer and a syringe with an atomizer on the end of it but will now try and use it in my sqeeze bottle rinse.

[pberggren1]

I just got a call letting me know that my Uncle Richard in Grande Prairie has a bad brain aneurism and is being flown to Edmonton right now.

Please keep him in your prayers.

Thnak You and God Bless,
Phil

[elephant]

I will Phil. Let us know.

[DEE]

thinking of you DEEx

[jola57]

Thinking of you and sending big hugs

[Sangye]

Hugs to you, Phil. You've had a really tough year. :hug2:

[Doug]

I'm seeing this on the 27th, so I hope and pray that your uncle has come through this successfully, Phil. I've prayed for him, for his physicians and nurses.

[pberggren1]

They had to remove part of my Uncle's skull to drain the blood out and have him heavily sedated so he does not move around and hurt his head. It sounds like he will not make it and if he does he will be a vegatable, but at least he will be alive and will serve a greater purpose.

[Sangye]

Oh, so sad. :sad:

[elephant]

Phil, I am so sorry to hear that.

[pberggren1]

Thanks everyone for your support.

He is starting to breathe on his own so they are going to try and take him off the ventilator and also try and slowly unsedate him. They do not expect he will every be able to talk again.

[jola57]

I'm so sorry, wishing you and your family all my best.

[Jack]

he will be a vegetable, but at least he will be alive and will serve a greater purpose.
I know this is going to sound insensitive and perhaps I should just stay quiet at this time, but I'm afraid I disagree. I feel very strongly that there comes a time when life alone is not enough and I have instructed everyone around me that they should not let me linger if I was ever in such a condition.

My thoughts and sympathies go out to you Phil and to everyone else involved. It must be a very difficult time.

[Doug]

Oh dear. I'm very sorry, Phil. Aneurisms are a frightening business for how fast they can take you down.

[Brooke]

I am sorry you are going through this Phil, it really does seem like it is always one thing after another. Please stay strong through this difficult time, prayers and hugs to you!

[pberggren1]

I saw a Chiropractor for the first time this morning. He worked on my back a bit and now it feels much better. He said to use ice packs on a couple of areas each day for 20 minutes until Monday and if it was not significantly better by then to come back and see him. He seemed very nice and was quite concerned about the Wegs and drugs I have used and the M. Abscessus as well. I used to play pool with his Dad, but unfortunately he passed away earlier this year. He was a good friend.

[Sangye]

Glad it went well, Phil. I can only imagine his expression when hearing about Wegs and the treatment. I just have to look in the mirror to know what it looks like. :unsure:

[pberggren1]

I heard tonight before supper that my Uncle's family decided to stop life support for him. Apparently the doctors must have swayed or convinced them to do it by telling them that they have never seen that much bleeding with a stroke before and other things like that. I am absolutely devistated that they decided to murder their own husband and father like this, their own flesh and blood. I am in shock they would do something this evil. I can't imagine facing them at the funeral. I doubt I will go. I feel myselft now going into a massive depression. I am very close to my Uncle spiritually and physically. We understood one another very well. We shared things with one another that we did not share with anyone else. He is by far the most intelligent and gifted human I know. I hope I feel better tomorrow.