Please help

[Aiden81]

Hello,
I was hoping some of you may be able to offer me some suggestions and help. I've been really sick for a long time now and i am suspicious of a chronic Pseudomonas infection, MRSA, fungal infection and/or cystic fibrosis. I have trying very hard to get the correct diagnosis and have seen many docs but it has been a very big challenge and i am continuing to spiral downward fast, worse everyday with respiratoary illness especially when i come off antibiotics because my symptoms get much worse within one to two weeks after stopping. This has been going on many years now and antibiotics are not working much at all anymore. There is a lot of symptoms, medical info, testing results i could share but before i get into all this i was hoping someone can answer some basic questions about cystic fibrosis....

1.) Does everyone with CF (cystic fibrosis) have some type of unhealthy colonization or infection with either PA, MRSA, fungus or some other chronic infection? Can you have cystic fibrosis and not have an overgrowth with one of these bacteria?

2.)What is the best testing to dx CF? Is a lung biopsy the only way to dx it? ANy other specific tests ?

3.)What would warrant a pulminologist to do a biopsy? Would you need evidence or bronchiectasis, nodules or other abnormalities in a CT scan to get a biopsy or have some patients here gotten biopisied based on symptoms alone?

4.)Is it common for people with CF to have other symptoms like autoimmune, neuromusuclar, neurological? Can CF directly cuase these problems or indirectly through means of infection?

5.)Can any pulminologist do a work up for CF or is it best to go to a clinic or hospital that specializes in this? Anyone know a good clinic in NYC area?

** i know i can do reading and research on the net to get some of these answeres but i really wanted to hear from people here as well. Thank you for the help.

 

[Printer]

You need to be seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST. There are several in NYC. Call on Monday. If necessary call your PCP for a referral. Don't wait and stop seeing the Doctor that you are seeing.

Columbia University Adult CF Clinic
212-305-0631
Director: Emily DiMongo, MD

 

[stephen]

From personal experience I can highly recommend Dr DiMango.

 

[Aiden81]

Okay thank you both for the repsonse. Can you tell me what tests would be run to diagnose CF? CT Scan or bronchoscopy right? Anything else i am missing? I know pulmonary function tests are available but i am assuming this just checks lung function and can not actaully diagnose what the problem is coming from.

 

[static]

Hello,
I was hoping some of you may be able to offer me some suggestions and help. I've been really sick for a long time now and i am suspicious of a chronic Pseudomonas infection, MRSA, fungal infection and/or cystic fibrosis. I have trying very hard to get the correct diagnosis and have seen many docs but it has been a very big challenge and i am continuing to spiral downward fast, worse everyday with respiratoary illness especially when i come off antibiotics because my symptoms get much worse within one to two weeks after stopping. This has been going on many years now and antibiotics are not working much at all anymore. There is a lot of symptoms, medical info, testing results i could share but before i get into all this i was hoping someone can answer some basic questions about cystic fibrosis....

1.) Does everyone with CF (cystic fibrosis) have some type of unhealthy colonization or infection with either PA, MRSA, fungus or some other chronic infection? Can you have cystic fibrosis and not have an overgrowth with one of these bacteria?

2.)What is the best testing to dx CF? Is a lung biopsy the only way to dx it? ANy other specific tests ?

3.)What would warrant a pulminologist to do a biopsy? Would you need evidence or bronchiectasis, nodules or other abnormalities in a CT scan to get a biopsy or have some patients here gotten biopisied based on symptoms alone?

4.)Is it common for people with CF to have other symptoms like autoimmune, neuromusuclar, neurological? Can CF directly cuase these problems or indirectly through means of infection?

5.)Can any pulminologist do a work up for CF or is it best to go to a clinic or hospital that specializes in this? Anyone know a good clinic in NYC area?

** i know i can do reading and research on the net to get some of these answeres but i really wanted to hear from people here as well. Thank you for the help.

Cf is normally detected using a sweat test (collects the amount of salt in your sweat).

1.) Doctors can test for those organisms by doing a sputum culture( the greener, the better. Try to cough hard enough to get the ssputum from deep within your lungs). if nothing shows up they can also do a bronscopy, but it has risks.

2 -3 I've never heard of a biopsy diagnosing CF. Usually they only do that to look for bacteria, as a last resort.

4. People can have other diseases in conjuction with CF, but everyone is different. one such documented disease is CFRD where the mucus interferes with insulin production, which is quite common in the CF population. Nuerological is rarely related to mild/moderate CF, but could come into play for severe CF due to anemia (low oxygen level in body). Of course with mental health a variety of other factors come into play as well such as family history and a slew of other possible contributors completely unrelated to CF.

5.) pulmonary Function tests and oxygen saturation are used to determine the level of lung damage in individuals with CF. As far as location, I agree with Printer find an accredited CF center and get tested. I am not from that area so I can't make any recomendations.

5.)

 

[ethan508]

1.) A good percentage of Cf-ers have some sort of bacterial colony (Pseudo, Staph, MRSA, etc.). Fungal colonies aren't as common, but not rare either. It is possible to steer completely clear of colonization but I suppose it to be rare. That being said just because a person is colonized doesn't mean they are sick all the time. I've had colonies for better than a decade and haven't had a hospital visit yet (but this isn't entirely common). As Static said, get a sputum culture and as Printer said, have it done at an accredited CF center. The CF center will be better at growing CF related cultures.

2.) Sweat test is the common first swing at dx and catches many cases (myself included). Second step is genetic testing that looks for 30 most common CF mutations. Third is a genetic test that looks for lots more (100s) CF mutations. (This is also the order of expense/difficulty). Also a little bit of family medical history might come in handy. If a parent or grandparent recalls a cousin with CF that is flashing red light.

3.) I'm not sure why they do biopsies, I suppose if they need a better look than what a sputum culture could give you.

4.) For autoimmune, CF-ers have a general tendency to catch more colds and flus and to have them longer. Neuromuscular issues in CF would be arthritis and joint point caused by systemic inflammation. I've got one brother that deals with gout a bit, his CF doctor seems to think it is related to CF. Sometimes I feel like I end up with a little more muscles soreness after an activity because it is harder for me to stay in an aerobic zone and I end up anaerobic (i.e. more lactic acid build up in my muscles). For Neurological issues, depression is a more common for people with chronic illness. All three of these would be exacerbated by malnutrition that is caused by endocrine pancreatic insufficiency (PI).

5.) As Printer said, go to an accredited CF center. Here is the list: http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/

 

[Aiden81]

Thank you all for the thorough answers and help here. Much appreciated

 

[LittleLab4CF]

Aiden81,

Now I understand the post about Cipro treating P.a.. The topic expired before I posted what would have been way, way more than you needed. A number of us probably experienced a collective gasp at the very question. P.a. isn't just any infection and it is more common in the CF community. This leads me to suspect that your journey began with a doctor diagnosing Pseudomonous a. and prescribed Cipro.

Both may have been foreign and you decided to ask us. That was a smart bit of thinking because we can answer questions and get your concern about CF addressed. P.a. is a super bug, virtually incurable once a colony switches to a quorum or a cooperative form. For healthy people P.a. is difficult to contract and properly treated, can be eradicated. Immune compromised and people who have thick, sticky mucus like with CF, the battle is not often winnable. Keeping infection limited is the best many can do. Eradication takes a smart and persistent doctor and patient. Most CF specialists are pulmonologists. The lungs are well understood, a pulmonologist dealing with infection and idealizing lung health may tell you that you don't have CF, but will be taking your P.a. infection seriously, like multiple antibiotic therapy.

For all your questions, you see a somewhat common theme; Get to an approved CF center. You can't beat a specific doctor recommended in your area so try to follow the advice you've solicited.

LL