Re: chronic staph infection

[Guest guest]

Hi Cheryl;

One of the first things they say at the Polychondritis Educational

Society is " don't self diagnose " :

http://www.polychondritis.com/

and I certianly do not have any experience in diagnosing

polychondritis. But you are correct that one of the symptoms is nasal

saddling:

http://www.polychondritis.com/RP/CommonSymptoms.html

However, saddle nose deformity could also be due to other conditions

such as Wegener's Granulomatosis (WG), which, according to The

Polychondritis Educational Society is difficult to distinguish from

RPC:

http://www.polychondritis.com/RP/Differentials.html

The Polychondritis Educational Society does provide a list of doctors

that have been known to treat Relapsing Polychondritis in each state,

but they don't endorse any:

http://www.polychondritis.com/Doctors/United_States.html

Unfortunately, there's none listed for ID ... sorry!

I wish you all the best in finding someone who can help you. Perhaps

a rheumatologist might be worth contacting?

Best regards,

Dave R.

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

,

Thank you so much for the prompt reply. I now remember that I had found pretty

much the same info two years ago from the RPC site you found. All local drs I've

consulted (rheum and ENTs) don't know much about RPC. I did have to have nasal

surgery to open up some sinus cavities that had collapsed after a previous sinus

surgery. That ENT also corrected some damage the first surgery did (improperly

placed drainage holes). It did not, however, help with the pain. The slow

collapse of my nasal bone continues. It looks like the most practical location

to see a specialist would be in the LA area. My son now lives there with his new

wife. They are expecting their first child, a boy, July 23. Another daughter who

lives here is expecting a girl July 28. We are happy.

You didn't happen to find anything about chronic infections (boils) and how that

might affect post transplant recovery? I am going to talk to my dr in may when

I see him again. It's disconcerting having a new dr and new staff. This new dr

has a totally different approach---very sound---just different. I was very

close with my last dr and was very sad when he died. He had seen me through so

many personal and medical crisises. Thanks again, take care, Cheryl ID, PSC/AIH,

UC, fibromyalgia, etc.

> Hi Cheryl;

>

> One of the first things they say at the Polychondritis Educational

> Society is " don't self diagnose " :

>

>

> Unfortunately, there's none listed for ID ... sorry!

>

> I wish you all the best in finding someone who can help you. Perhaps

> a rheumatologist might be worth contacting?

>

> Best regards,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

>

>

>

>

[Guest guest]

,

Thank you so much for the prompt reply. I now remember that I had found pretty

much the same info two years ago from the RPC site you found. All local drs I've

consulted (rheum and ENTs) don't know much about RPC. I did have to have nasal

surgery to open up some sinus cavities that had collapsed after a previous sinus

surgery. That ENT also corrected some damage the first surgery did (improperly

placed drainage holes). It did not, however, help with the pain. The slow

collapse of my nasal bone continues. It looks like the most practical location

to see a specialist would be in the LA area. My son now lives there with his new

wife. They are expecting their first child, a boy, July 23. Another daughter who

lives here is expecting a girl July 28. We are happy.

You didn't happen to find anything about chronic infections (boils) and how that

might affect post transplant recovery? I am going to talk to my dr in may when

I see him again. It's disconcerting having a new dr and new staff. This new dr

has a totally different approach---very sound---just different. I was very

close with my last dr and was very sad when he died. He had seen me through so

many personal and medical crisises. Thanks again, take care, Cheryl ID, PSC/AIH,

UC, fibromyalgia, etc.

> Hi Cheryl;

>

> One of the first things they say at the Polychondritis Educational

> Society is " don't self diagnose " :

>

>

> Unfortunately, there's none listed for ID ... sorry!

>

> I wish you all the best in finding someone who can help you. Perhaps

> a rheumatologist might be worth contacting?

>

> Best regards,

>

> Dave R.

> (father of (22); PSC 07/03; UC 08/03)

>

>

>

>

>

[Guest guest]

Logan

All I can comment on is your mention of cold sores. This is a herpes virus and can be treated with Valtrex. I have taken it since my tx, 5 years ago. For my whole life I had cold sores whenever I got a cold or had extreme stress. It was awful, but since I started Valtrex, I have not had even one. It is advertised for genital herpes, but herpes is herpes and it works! My transplant doc writes the presciption. Hope thiis helps.

Take Care

MizKit

Planning your summer road trip? Check out AOL Travel Guides.

[Guest guest]

Dear MizKit,

the cold sores are miserable but my Hep won't let me take Valtrex. I use topical

Denvir and the outbreaks are not as bad as before. I've had cold sores for about

15 years now. The boils are more recent and worry me a bit since most boils are

staph infection and mine are chronic. My husband (who is the Logan) used

Valtrex for a a whole year but unfortunately his came back. 60-70% don't recur

after the year long treatment. He treats each outbreak with Valtrex and they go

away very quickly. I definitely get them during stressful, busy times. If I

overdo it, I will pay for it with infections, etc. Thanks for the response, it's

nice to think that post tx I can try the Valtrex. Take care, Cheryl ID PSC/AIh,

UC, fibromyalgia

>

> Logan

>

>

>

> All I can comment on is your mention of cold sores.? This is a herpes virus

and can be treated with Valtrex. I have taken it since my tx, 5 years ago.? For

my whole life I had cold sores whenever I got a cold or had extreme stress.?

It?was awful, but since I started Valtrex, I have not had even one.? It is

advertised for genital herpes, but herpes is herpes and it works!? My transplant

doc writes the presciption.? Hope thiis helps.

>

> Take Care

> MizKit

>

>

>

>

>

[Guest guest]

Dear MizKit,

the cold sores are miserable but my Hep won't let me take Valtrex. I use topical

Denvir and the outbreaks are not as bad as before. I've had cold sores for about

15 years now. The boils are more recent and worry me a bit since most boils are

staph infection and mine are chronic. My husband (who is the Logan) used

Valtrex for a a whole year but unfortunately his came back. 60-70% don't recur

after the year long treatment. He treats each outbreak with Valtrex and they go

away very quickly. I definitely get them during stressful, busy times. If I

overdo it, I will pay for it with infections, etc. Thanks for the response, it's

nice to think that post tx I can try the Valtrex. Take care, Cheryl ID PSC/AIh,

UC, fibromyalgia

>

> Logan

>

>

>

> All I can comment on is your mention of cold sores.? This is a herpes virus

and can be treated with Valtrex. I have taken it since my tx, 5 years ago.? For

my whole life I had cold sores whenever I got a cold or had extreme stress.?

It?was awful, but since I started Valtrex, I have not had even one.? It is

advertised for genital herpes, but herpes is herpes and it works!? My transplant

doc writes the presciption.? Hope thiis helps.

>

> Take Care

> MizKit

>

>

>

>

>

[Guest guest]

Hi Cheryl;

Regarding recurrent boils, the only thing I can come up with is that

if your neutrophils are not functioning properly, the neutrophils may

have a difficult time controlling Staphylococcus aureus infections.

There are some reports that in patients with impaired neutrophil

activity/function, vitamin C can help control recurrent boils

(recurrent furunculosis). Apparently, the vitamin C can restore

neutrophil function:

Levy R, Shriker O, Porath A, Riesenberg K, Schlaeffer F (1996)

Vitamin C for the treatment of recurrent furunculosis in patients

with imparied neutrophil functions. J. Infect. Dis. 173: 1502-1505.

http://www.ncbi.nlm.nih.gov/pubmed/8648230

If your doctor suspects Staphylococcus aureus, and you have a nasal

infection, please be checked for multidrug resistant Staphylococcus

aureus (MRSA). According to this abstract ....

Staphylococcus aureus Nasal Colonization and Infection in Liver

Transplant Recipients. BERT F, GALDBART JO, ZARROUK V, LE MEE J,

DURAND F, BELGHITI J, LAMBERT N, FANTIN B. Abstr Intersci Conf

Antimicrob Agents Chemother Intersci Conf Antimicrob Agents

Chemother. 1999 Sep 26-29; 39: 591 (abstract no. 513).

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102246245.html

" Our results indicate that MRSA nasal colonization at the time of

surgery is associated with a very high risk of subsequent MRSA

infection in liver transplant recipients. Candidates for liver

transplant should systematically be screened for MRSA nasal carriage. "

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

>

> You didn't happen to find anything about chronic infections (boils)

and how that might affect post transplant recovery?

[Guest guest]

Hi Cheryl;

Regarding recurrent boils, the only thing I can come up with is that

if your neutrophils are not functioning properly, the neutrophils may

have a difficult time controlling Staphylococcus aureus infections.

There are some reports that in patients with impaired neutrophil

activity/function, vitamin C can help control recurrent boils

(recurrent furunculosis). Apparently, the vitamin C can restore

neutrophil function:

Levy R, Shriker O, Porath A, Riesenberg K, Schlaeffer F (1996)

Vitamin C for the treatment of recurrent furunculosis in patients

with imparied neutrophil functions. J. Infect. Dis. 173: 1502-1505.

http://www.ncbi.nlm.nih.gov/pubmed/8648230

If your doctor suspects Staphylococcus aureus, and you have a nasal

infection, please be checked for multidrug resistant Staphylococcus

aureus (MRSA). According to this abstract ....

Staphylococcus aureus Nasal Colonization and Infection in Liver

Transplant Recipients. BERT F, GALDBART JO, ZARROUK V, LE MEE J,

DURAND F, BELGHITI J, LAMBERT N, FANTIN B. Abstr Intersci Conf

Antimicrob Agents Chemother Intersci Conf Antimicrob Agents

Chemother. 1999 Sep 26-29; 39: 591 (abstract no. 513).

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102246245.html

" Our results indicate that MRSA nasal colonization at the time of

surgery is associated with a very high risk of subsequent MRSA

infection in liver transplant recipients. Candidates for liver

transplant should systematically be screened for MRSA nasal carriage. "

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

>

> You didn't happen to find anything about chronic infections (boils)

and how that might affect post transplant recovery?

[Guest guest]

Hi Cheryl;

Regarding recurrent boils, the only thing I can come up with is that

if your neutrophils are not functioning properly, the neutrophils may

have a difficult time controlling Staphylococcus aureus infections.

There are some reports that in patients with impaired neutrophil

activity/function, vitamin C can help control recurrent boils

(recurrent furunculosis). Apparently, the vitamin C can restore

neutrophil function:

Levy R, Shriker O, Porath A, Riesenberg K, Schlaeffer F (1996)

Vitamin C for the treatment of recurrent furunculosis in patients

with imparied neutrophil functions. J. Infect. Dis. 173: 1502-1505.

http://www.ncbi.nlm.nih.gov/pubmed/8648230

If your doctor suspects Staphylococcus aureus, and you have a nasal

infection, please be checked for multidrug resistant Staphylococcus

aureus (MRSA). According to this abstract ....

Staphylococcus aureus Nasal Colonization and Infection in Liver

Transplant Recipients. BERT F, GALDBART JO, ZARROUK V, LE MEE J,

DURAND F, BELGHITI J, LAMBERT N, FANTIN B. Abstr Intersci Conf

Antimicrob Agents Chemother Intersci Conf Antimicrob Agents

Chemother. 1999 Sep 26-29; 39: 591 (abstract no. 513).

http://gateway.nlm.nih.gov/MeetingAbstracts/ma?f=102246245.html

" Our results indicate that MRSA nasal colonization at the time of

surgery is associated with a very high risk of subsequent MRSA

infection in liver transplant recipients. Candidates for liver

transplant should systematically be screened for MRSA nasal carriage. "

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

>

> You didn't happen to find anything about chronic infections (boils)

and how that might affect post transplant recovery?