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Greg,

Here is the article. BTW, Medscape can be joined free from Webmd.com. As a

member, they send me the latest articles on asthma and sinusitis.

Hope this copies OK

Jim

Fungal Sinusitis in the Immunocompetent Patient: Risk Factors and Surgical

Management

Usamah Hadi, Ray Hachem, Raja Saade, Rola Husni, Issam Raad

Surg Infect 4(2):199-204, 2003. © 2003 Ann Liebert, Inc.

Posted 07/24/2003

Abstract and Introduction

Abstract

Background: Fungal sinusitis has been reported increasingly in

immunocompetent patients. However, the most effective, appropriate mode of

therapy has not been determined.

Materials and Methods: In this retrospective study, we examined the records

of 110 immunocompetent patients with chronic sinusitis who had undergone

sinus surgery at our institution between 1983 and 1994. Five patients (4.5%)

with fungal sinusitis were identified. Information on those patients was

compared with that of the 105 patients with nonfungal sinusitis.

Results: Prolonged use of topical steroids was no more common in patients

with fungal sinusitis (20%) than it was in patients with nonfungal sinusitis

(4.8%) (p < 0.25). Differentiating features of fungal sinusitis were the

presence of a metallic density and areas of high-and low-density on

radiologic examination (p , 0.01). All five of the patients with fungal

sinusitis were cured by surgical intervention, primarily endoscopic sinus

surgery, without under-going anti-mycotic therapy. Four of the five patients

were followed up for at least 3 years without any recurrence.

Conclusion: Endoscopic sinus surgery is and should remain the mainstay of

treatment for fungal sinusitis in immunocompetent patients. Adjunctive

anti-mycotic therapy may not be necessary.

Introduction

Fungal sinusitis is a well-documented disease in the immunocompromised

patient, but recently many reports have indicated an increased prevalence of

fungal sinusitis in otherwise healthy individuals[1-3]. Local factors that

may predispose healthy patients to fungal infections of the paranasal

sinuses include recurrent bouts of sinusitis, increased exposure to air or

food contaminated with mycotic spores, domestic pets, and root canal

fillings[1-3]. Environmental factors could also play a role; in Sudan and

Saudi Arabia, where the incidence of fungal sinusitis is so high that it is

sometimes described as endemic, sandstorms are believed to help disseminate

fungal spores, exposing people to large inoculae[2,4,5].

The diagnosis and treatment of fungal sinusitis remain challenging to both

general internists and otorhinolaryngology (ENT) specialists. Local

antimycotic agents such as clotrimazole and terbinafine have been used

therapeutically by some surgeons, intraoperatively and at postoperative

follow-up. However, the usefulness of these drugs has been limited -- they

are effective only against the hyphal form of the fungus, but not the

spores[3].

We performed this retrospective study to compare patients with chronic

sinusitis with those with fungal sinusitis in an attempt to identify some

risk factors and compare physical findings, treatments, and outcomes.

Materials and Methods

Case Definition

Chronic sinusitis is defined as chronic sinus drainage that lasts for more

than six months despite treatment with multiple courses of oral

broad-spectrum antibiotics and local and oral decongestants. Fungal

sinusitis, as defined by the European Organization for Research and

Treatment of Cancer, is histopathologic evidence of hyphae in sinus tissue

and invasion or tissue damage, with or without positive intraoperative

fungal cultures.

For this study, we reviewed the ENT surgical records of 110 immunocompetent

patients from 1983 through 1994 at the American University of Beirut,

Lebanon, one of the largest medical referral centers in the Middle East. All

available charts were reviewed, and all patients with chronic sinusitis who

had undergone sinus surgery during the study period were identified. Data

extracted included the patients' clinical symptoms, ENT examination notes,

radiologic findings, pathology reports, results of culturing, treatments

given, and outcomes.

The data from patients with fungal sinusitis were analyzed and compared with

those from patients with other types of chronic sinusitis. All variables

were compared between the two groups. Means of appropriate variables were

calculated. A P value of </=0.05 was considered significant. Odds ratios

were also used when appropriate[6].

Results

We reviewed 110 charts from patients who had had chronic sinusitis. Five

(4.5%) of those patients had fungal sinusitis, 52 (47%) had allergic

sinusitis, and 53 (48%) had infectious sinusitis. Forty-eight patients had

bacterial infection only.

The clinical manifestations, findings on physical examination, radiological

examinations, treatments given, and outcomes of the cases of fungal

sinusitis are summarized in Table 1. The mean age of all patients was 37.5

years (range, 30-47 years). None of the patients had underlying

immunosuppressive disorders before surgery. Twenty-five percent of all

patients had unilateral sinusitis. The most common sinuses involved in

patients with fungal sinusitis were the maxillary sinuses (100%) and the

ethmoidal sinuses (60%). Areas of metallic density (60%) and high and low

densities (40%) were seen on computed tomography (CT) scans from the

patients with fungal sinusitis (Figs. 1 and 2). The latter two findings were

significantly associated with fungal sinusitis (p , 0.01; Table 2).

Figure 1. Metallic density area is seen in the left maxillary antrum

opacity. This is believed to result from crystallization of calcium salts

within the mycotic mass.

Figure 2. High-and low-density areas are noticed inside the left maxillary

sinus. This gives a high index of suspicion for a fungal infection.

The pathologic findings indicated nonspecific inflammation in 40% of the

cases of fungal sinusitis and in 30% of the other cases. Polyps were found

in 40% of the fungal sinusitis cases and in 66% of the other cases. Figure 3

shows fungal hyphae in the surgical specimen obtained from one of the

patients with fungal sinusitis.

Figure 3. PAS (periodic acid-Schiff) stain of sinus content shows septated

hyphae branching at 45 degrees characteristic of aspergillosis.

Prior topical steroids had not been used more frequently in patients with

fungal sinusitis than in those with other types of sinusitis (20% vs. 4.8%,

respectively; p 5 0.25). No antimycotic treatment was used in any of the

five patients.

All five patients with fungal sinusitis had been treated surgically. The

Caldwell-Luc operation was used for a patient seen before 1985 (case 1), and

the endoscopic procedure was used thereafter (cases 2-5). Four of the five

patients with fungal sinusitis had undergone endoscopic surgery with

prolonged follow-up. All patients except case 1 (who was lost to follow-up)

had been followed up for at least 3 years, and had been free of disease

during that time.

Discussion

The first case of fungal sinusitis was reported in 1885[1]. This fungal

disease occurred rarely until the past decade, when a worldwide increase in

its incidence occurred[7,8]. Laskownicka et al.[7] reported an incidence of

28.7%, whereas among patients studied at Graz University, only 10% of those

treated surgically for sinusitis had a mycotic cause[1]. Aspergillus

fumigatus is reported to be the most common organism involved in fungal

sinusitis, followed by fungi of the order Mucorales[1-4]. A. fumigatus is a

saprobe that is found on fruits and grains, and in decaying organic

material, soil, and dust. Microscopically, A. fumigatus is characterized by

septate hyphae that branch at 45° angles, unlike members of the class

Zygomycetes, which have non-septate hyphae, that branch at right angles. A.

fumigatus can cause non-invasive colonization (mycetoma), or semi-invasive

disease in healthy patients, or it can cause fulminant invasive disease, as

in immunocompromised patients[3,5].

Why does A. fumigatus, a saprobe, become pathogenic in immunocompetent

patients? One hypothesis is that obstruction of the sinus ostium results in

stagnation of mucus and impairment of ciliary function, thereby preventing

clearance of any fungal hyphae present where viral or bacterial sinusitis

occurs. Those viral or bacterial organisms can then provide nutrients to the

fungal hyphae, which start proliferating in a low pH medium[4,6], and

sometimes in globular fashion, eventually forming a fungal ball. Aspergillus

can have a vegetative form that lacks the keratolytic properties necessary

to cause invasive disease but can instead colonize the sinus mucus, or it

can have a nonvegetative form (i.e., spores) that can survive under

favorable conditions for years in a dormant state[1-4].

Clinically, fungal sinusitis can mimic chronic bacterial sinusitis, and

making the correct diagnosis can be challenging[4,8]. We speculate that

long-term antibiotic intake, recurrent bacterial sinusitis, and long-term

topical steroid use increase a patient's risk for developing fungal

sinusitis. Although Katzenstein et al.[9] suggested in 1983 that A.

fumigatus may be found routinely in the sinuses of patients with nasal

allergies, we did not find any correlation between allergic rhinitis and

fungal sinusitis. Stammberger[1] suggested that symptoms such as a sensation

of a foreign body in the nose or expulsion of crusts and friable masses when

sneezing strongly suggest an underlying fungal infection.

Further, a fungal infection should be suspected if one or a combination of

the following findings are seen on CT scans[1,2,10]: A film of air between

the sinus mass and the roof of the sinus, an area of metallic density area

inside the sinus, or areas of high and low density inside the sinus cavity.

In our patients, we saw areas of metallic density in 60% (3/5) and areas of

high and low density in 40% (2/5). These two findings were not seen in any

of the 105 cases of nonfungal sinusitis in our patients (p , 0.01 (Table 2).

In addition, unilaterality of the disease seems to suggest fungal infection.

The maxillary sinus was the most commonly involved sinus in cases of fungal

infection in our patients, in accord with other findings reported in the

literature[1,4].

The clinical and radiologic factors mentioned previously are important for

differentiating fungal from other types of sinusitis, but an

accurate diagnosis depends on histologic examination and culturing[5].

Although special stains have been recommended, such as periodic acid-Schiff,

Gridley versus fungus, and methenamine silver sulfate[4], routine staining

with hematoxylin and eosin can identify read-ily the fungal mycelia, the

branching hyphae, and the spores[1]. Moreover, the intraoperative finding of

friable concretions in a sinus should alert surgeons and pathologists to a

probable fungal infection.

The classic Caldwell-Luc procedure was the only surgical approach used to

treat fungal sinusitis until 1985, when Stammberger[3] introduced the

endoscopic technique and combined it with the canine fossa approach as an

alternative and more effective procedure. We used only the endoscopic

technique, using the 30° and 70° Hopkins rigid telescopes (Karl Storz,

Tuttlinger, Germany), and have found it very effective for visualizing the

whole maxillary sinus without the need for another adjunctive approach.

Irrigation of the maxillary antrum with physiologic saline is very helpful

in cleaning the cavity of any residual fungal debris. Four of the five

patients with fungal sinusitis in our study underwent the endoscopic

approach with excellent results on postoperative follow-up. Surgery remains

the mainstay of treatment for fungal sinusitis[3], and endo-scopic

techniques have been shown to be the most effective method of preventing

recur-rence.

We realize that this study analyzed only a limited number of cases of fungal

sinusitis. Another limitation is that this is a retrospective study of

patients who received surgical treatment at only one medical center.

However, our results were consistent in many aspects with those reported in

the literature. Our experience suggests that endoscopic sinus surgery should

remain the mainstay of treatment, without the need for additional antifungal

therapy in most cases.

Tables

Table 1. Summary of Findings Among Five Patients With Fungal Sinusitis

Table 2. Characteristics of Cases and Controls

References

1.. Stammberger H. Special problems. In: Stammberger H, ed. Functional

endoscopic sinus surgery, 1st ed. Philadelphia: B.C. Decker, 1991:321-424.

2.. Blitzer A, Lawson W. Fungal infections of the nose and paranasal

sinuses. Part I. Otolaryngol Clin North Am 1993;26:1007-1035.

3.. Stammberger H. Endoscopic surgery for mycotic and chronic recurring

sinusitis. Ann Otol Rhinol Laryngol 1985;94(suppl 119):1-11.

4.. Jahrsdoerfer RA, Ejercito VS, MM, et al. Aspergillosis of the

nose and paranasal sinuses. Am J Otolaryngol 1979;1:6-14.

5.. Brandwein M. Histopathology of sinonasal fungal disease. Otolaryngol

Clin North Am 1993;26:949-981.

6.. MJ, Machin D, eds. Medical statistics, a common sense

approach, 2nd ed. West Sussex, U.K. Wiley, 1993.

7.. Laskownicka AZ, Kurdzielewicz J, Macura A, et al. Myocotic sinusitis

in children. Mykosen 1978;21: 407-411.

8.. Lund VJ, Lloyd G, Savy L, et al. Fungal rhinosinusitis. J Laryngol

Otol 2000;114:76-80.

9.. Katzenstein AL, Sale SR, Greenberger PA. Allergic Aspergillus

sinusitis: a newly recognized form of sinusitis. J Allergy Clin Immunol

1983;72:89-93.

10.. Som PM. Imaging of paranasal sinus fungal disease. Otolaryngol Clin

North Am 1993;26:983-994.

Reprint Address

Issam Raad, M.D., Department of Infectious Diseases, Infection Control and

Employee Health-Unit, 402 University of Texas, M.D. Cancer Center,

1515 Holcombe Blvd. Houston, TX 77030. E-mail: iraad@....

Usamah Hadi,1 Ray Hachem,2 Raja Saade,2 Rola Husni,1 Issam Raad2

1American University of Beirut School of Medicine, Beirut, Lebanon

2Department of Infectious Diseases, Infection Control and Employee Health,

University of Texas M.D. Cancer Center, Houston, Texas

----------------------------------------------------------------------------

----

Re: Fungal Infections

> Jim,

>

> I'm quite interested in the article, but not registered on that

> site. Any chance you can repost the article here?

>

> Thanks,

> Greg

>

>

> > Re the recent discussions about fungus, here's a new paper I just

> ran across.

> > Jim

> >

> > http://www.medscape.com/viewarticle/458824

>

>

>

>

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  • 3 years later...
Guest guest

I don't know about your question with regard to zappers, but it seems

like there is often aspergillus and other fungal infections instead of

or in addition to candida. My clue was the intensity of my detox was

several times more severe than candida usually gives, also reacted on

tests slightly to candida, but severly to others.

I also would be interested in the issue of a more or less systemic

fungal infection and treatment.

kathryn

On Jun 29, 2007, at 9:51 AM, Robyn Lamprecht wrote:

> is there any discussion on the use of the zapper with fungal

> infections? My husband is working thru some Candida with antifungal

> medicines from a naturopath but we suspect there are more fungal

> things happening than the Candida. Can anyone respond to this issue?

> thanks

>

> Robyn

>

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Guest guest

so back to the question, is the zapper effective against a fungal problem?

We are going to use it to help with prepration for a liver cleanse first to make

sure we get any parasites or bugs that are complicating his symtoms, but are

wondering if the zapper will be working on the candida and others that may be

affecting him right now.

thanks for everyone's help, it is a little less scary, knowing we are not alone

is trying to get help!

Robyn

Re: fungal infections

Aspergillus, candida, etc. are NOT infections -- they are 'colonizations' .

When (quite rarely) these are truly infections, they are very severe, with

abscesses, possibly contagious -- and without treatment, rapidly fatal.

Chronic 'fungal colonizations' rarely turn into infections. Rather,

without treatment they 'hang around forever', and are not contagious.

Bill

At 01:56 PM 6/29/2007, Clayton Family wrote:

>

>I don't know about your question with regard to zappers, but it seems

>like there is often aspergillus and other fungal infections instead of

>or in addition to candida. My clue was the intensity of my detox was

>several times more severe than candida usually gives, also reacted on

>tests slightly to candida, but severly to others.

>

>I also would be interested in the issue of a more or less systemic

>fungal infection and treatment.

>

>kathryn

>

>

>

>

>> is there any discussion on the use of the zapper with fungal

>> infections? My husband is working thru some Candida with antifungal

>> medicines from a naturopath but we suspect there are more fungal

>> things happening than the Candida. Can anyone respond to this issue?

>> thanks

>>

>> Robyn

>>

>

>

>

>

>

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  • 1 month later...

Hello,

I am rather new to this list and joined because I have

two ASD children and both sides of their family suffer

from autoimmunity diseases. My children has an aunt

with CFIDS and has been suffering from it since 1998

and I have an aunt with fibromylagia. Both sides of

our family have diabetes (not obsesity related) and my

grandmother had an overactive thyroid.

My question is this, do any of you (with ASD) or your

children with ASD have problems with fungal

infections? Both of my children (9 and 6) have had

strep but my nine year old had ringworm last winter

and spring and now he has thrush. His behaviours

always spikes during this and for me, it is the first

sign that something is not right with him. He was

prescribed Fluconazole (liquid) - 4ml the first day

and then 2ml for the next 13 days.

For the life of me, I don't understand how he gets

this. I brush his teeth regularly (and he is in a

teeth brushing ABA program at school). When he had

ringworm, the teacher asked me if we had a dog (which

we do not).

I spoke to my sister-in-law yesterday (she has CFIDS)

and she told me that her father had thrush and she got

it when she had a growth on her tongue removed. What

is really strange about this is that she came down

with CFIDS several months after her operation on her

tongue. It took her well over a year to be diagnosed

with it but she was definitely sick after her

operation.

One more note, both of my children also suffer from

strep and were treated with it when I lived in Germany

but I struggle here in Ohio to get them tested for it.

I would appreciate any knowledge you may have on

fungal infections and what I can do to prevent this

from happening again.

Thank you,

Jill

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Many ASD children suffer from fungal infections and bacteria. You

should really research the website and learn all you can about

as it sounds like your children are good candidates.

cheryl

PS: ringworm isn't likely to be ASD related, though. It's pretty

common and it's *everywhere*. Very easy to pick up. Thrush and

other systemic fungi are very common in ASD children, though.

On Aug 19, 2007, at 6:39 AM, Jill Boyer wrote:

> Hello,

>

> I am rather new to this list and joined because I have

> two ASD children and both sides of their family suffer

> from autoimmunity diseases. My children has an aunt

> with CFIDS and has been suffering from it since 1998

> and I have an aunt with fibromylagia. Both sides of

> our family have diabetes (not obsesity related) and my

> grandmother had an overactive thyroid.

>

> My question is this, do any of you (with ASD) or your

> children with ASD have problems with fungal

> infections? Both of my children (9 and 6) have had

> strep but my nine year old had ringworm last winter

> and spring and now he has thrush. His behaviours

> always spikes during this and for me, it is the first

> sign that something is not right with him. He was

> prescribed Fluconazole (liquid) - 4ml the first day

> and then 2ml for the next 13 days.

>

> For the life of me, I don't understand how he gets

> this. I brush his teeth regularly (and he is in a

> teeth brushing ABA program at school). When he had

> ringworm, the teacher asked me if we had a dog (which

> we do not).

>

> I spoke to my sister-in-law yesterday (she has CFIDS)

> and she told me that her father had thrush and she got

> it when she had a growth on her tongue removed. What

> is really strange about this is that she came down

> with CFIDS several months after her operation on her

> tongue. It took her well over a year to be diagnosed

> with it but she was definitely sick after her

> operation.

>

> One more note, both of my children also suffer from

> strep and were treated with it when I lived in Germany

> but I struggle here in Ohio to get them tested for it.

>

> I would appreciate any knowledge you may have on

> fungal infections and what I can do to prevent this

> from happening again.

>

> Thank you,

>

> Jill

>

> __________________________________________________________

> Park yourself in front of a world of choices in alternative

> vehicles. Visit the Auto Green Center.

> http://autos./green_center/

>

>

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Hi Jill -

I have responses in the text below @ ***>...

--- Jill Boyer <sjillboyer@...> wrote:

> Hello,

>

> I am rather new to this list and joined because I

> have

> two ASD children and both sides of their family

> suffer

> from autoimmunity diseases. My children has an aunt

> with CFIDS and has been suffering from it since 1998

> and I have an aunt with fibromylagia. Both sides of

> our family have diabetes (not obsesity related) and

> my

> grandmother had an overactive thyroid.

***** Autoimmunity is defintely related, and CFIDS and

autism have like 90% similar findings, and NeuroSPECTs

show the same pattern of blood flow in the brain, as

well as the same immune panels, symptoms, etc. It is

hypothesized that the age of onset (CFIDS in

teens/adults vs infants/toddlers) determines the

manifestation of symtoms, and that the diminished

blood flow caused by the disorder/dysfunction in the

developing brain is responsible for the majority of

symptoms... ie a form of sickness behavior.

>

> My question is this, do any of you (with ASD) or

> your

> children with ASD have problems with fungal

> infections? Both of my children (9 and 6) have had

> strep but my nine year old had ringworm last winter

> and spring and now he has thrush. His behaviours

> always spikes during this and for me, it is the

> first

> sign that something is not right with him. He was

> prescribed Fluconazole (liquid) - 4ml the first day

> and then 2ml for the next 13 days.

**** My youngest non-ASD son, when he was born until

15-18months old, would wake screaming throughout the

night from tummy pain, never sleeping more than an

hour and a half, and it totally resolved w/Diflucan,

came back when it was stopped. My oldest had several

bouts of thrush, but when he was put on diflucan,

major changes happened (for the better) in his speech

and sensory processing. They both do very well when

on antifungals. I have had repeated thrush lately

since I caught strep for the first time in years in

Jan 2003 and have had problems with it since. I feel

much better on antifungals too.

Whether it's directly due to fungal infections I can't

absolutely say, because there are other things

affected by the antifungals as well, and sometimes the

response to antifungals occured faster than the

infection was stopped. But we do have them more than

we should.

It is likely due to a defect in cellular immunity,

possibly low Natural Killer cells (NKs) or poor NK

function. This can be a result of chronic viral

infection. Also, other findings are often low

immunoglobulins, sometimes just in the IgG subclasses,

etc. They are typically not low enough to warrant

intervention according to current mainstream criteria,

so you have to have a doctor particularly interested

in immune dysfunction for them to be particularly

motivated to treat them.

> For the life of me, I don't understand how he gets

> this. I brush his teeth regularly (and he is in a

> teeth brushing ABA program at school). When he had

> ringworm, the teacher asked me if we had a dog

> (which

> we do not).

**** It's just so easy to have ... yeast is in most

people, and in our kids, it's difficult to eradicate

w/out reducing carbs and sugar pretty drastically and

having long-term antifungal therapy. Also, low strain

probiotics can be very helpful, ie acidophilus, or

kryodophilus. Don't buy into the big strain kinds -

they can set off the wrong parts of the immune system.

(They can get better w/out antifungals, but the

antifungals are quite helpful.)

>

> I spoke to my sister-in-law yesterday (she has

> CFIDS)

> and she told me that her father had thrush and she

> got

> it when she had a growth on her tongue removed. What

> is really strange about this is that she came down

> with CFIDS several months after her operation on her

> tongue. It took her well over a year to be diagnosed

> with it but she was definitely sick after her

> operation.

***** Probably got a lot of bacteria in her

bloodstream. Surgery is a known potential trigger of

CFIDS.

>

> One more note, both of my children also suffer from

> strep and were treated with it when I lived in

> Germany

> but I struggle here in Ohio to get them tested for

> it.

***** Frequent antibiotic use will certainly

contribute to thrush, and in my case, when I have

strep, I get thrush too whether or not I have

antibiotics. It's a sign of the immune system being

stressed or not responding appropriately. But you

must must must treat the strep. Request strep tests

regardless of the absence of symptoms. When it comes

back positive and they say " Oh they must just be

carriers " ... do not fall for that one, but rather

insist on antibodies. If your pediatrician won't

test, I'd go to the doc-in-the-box - they're far less

resistant to doing testing if you request it. :)

Do they get OCD or high anxiety w/strep?

>

>

> I would appreciate any knowledge you may have on

> fungal infections and what I can do to prevent this

> from happening again.

>

> Thank you,

>

> Jill

***HTH-

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Jill,

Yeast overgrowth, etc. is definitely a problem for our kids.

Part of the typical treatment Dr. Goldberg uses with the " " children in

his practice is to keep them on an antifungal ALL of the time (one of my

sons has been on an antifungal for at least 5 years nonstop). We rotate the

antifungal every so often to keep things under control. Since one

antifungal may not kill EVERY type of yeast, the rotation is a good idea to

cover a broader spectrum. The three antifungals Dr. Goldberg generally uses

are Nizoral, Diflucan and Amphotericin B.

One more thing Dr. Goldberg has parents implement is a special diet (there

is a basic diet on the website but he adjusts it to each individual child

according to their food screen blood test results and observed

sensitivities). One very important part of the diet is KEEPING THE

CHILDREN'S SUGAR INTAKE LOW SO THAT THEIR DIET IS NOT FEEDING YEAST IN THEIR

BODIES.

Testing for yeast overgrowth, etc. is not quite am exact science, so it's

not much help to do it in many cases.

One thing we do watch for when starting an antifungal is a " die off " or

Herxheimer effect where the kids get a little wild (OK sometimes really

wild... my normally mellow child was doing Tarzan yells and diving head

first into the ball pit at therapy when he had always been very timid about

getting into the ball pit before). An obvious " die off " is a sign that

there was probably a yeast problem... as the yeast dies off the " stuff " it

releases into the child's body can really send him/her for a loop. The

great thing is that after the die off clears the kids are often more

connected, etc. than they were before.

Hope that helps.

Caroline

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Thank you Caroline and Cheryl. I am printing the pdf

pages off of the website now. I had eliminated milk

from my son's diet several years ago but then I

started allowing him to eat cereal with milk last

year. I then allowed him to have ice cream for the

last month and is behaviours were off the charts. I

started the first dose on Friday and he had several

BM's. He had diarrhea yesterday but he also got his

appetite back. He had a strange meltdown today and I

was so worried that I opened the back door and let him

out in the rain just to calm him down. He loves the

outdoors. Well, I can hide the ice cream from him but

he is addicted to Rice Krispies. I will check out the

rice milk recipe and see if he will eat the Rice

Krispies with the rice milk.

If any of you know of a doctor in or near

Columbus, OH or a doctor that is familiar with the

protocol, please let me know. It is like pulling

teeth to get my doctor to test anything. I am sure my

sister-in-law would be very interested in this as

well.

All the best,

Jill

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You don't necessarily have to use rice milk, you can use goat milk,

almond milk, soy milk, Dari-Free (I think that's what it's called) or

any other non-cow dairy alternative. You may find that he's still

sensitive to goat's milk and soy milk but you won't know until you

try. You should be able to find rice milk and most other milks at

the grocery store although for almond milk you may need to go to a

health food store. Some of our local grocery stores carry almond

milk but not all.

Cheryl

On Aug 19, 2007, at 7:33 PM, Jill Boyer wrote:

> Thank you Caroline and Cheryl. I am printing the pdf

> pages off of the website now. I had eliminated milk

> from my son's diet several years ago but then I

> started allowing him to eat cereal with milk last

> year. I then allowed him to have ice cream for the

> last month and is behaviours were off the charts. I

> started the first dose on Friday and he had several

> BM's. He had diarrhea yesterday but he also got his

> appetite back. He had a strange meltdown today and I

> was so worried that I opened the back door and let him

> out in the rain just to calm him down. He loves the

> outdoors. Well, I can hide the ice cream from him but

> he is addicted to Rice Krispies. I will check out the

> rice milk recipe and see if he will eat the Rice

> Krispies with the rice milk.

>

> If any of you know of a doctor in or near

> Columbus, OH or a doctor that is familiar with the

> protocol, please let me know. It is like pulling

> teeth to get my doctor to test anything. I am sure my

> sister-in-law would be very interested in this as

> well.

>

> All the best,

>

> Jill

>

> __________________________________________________________Ready for

> the edge of your seat?

> Check out tonight's top picks on TV.

> http://tv./

>

>

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Jill,

Actually Dr. G is not OK with rice milk because it is generally made from

brown rice which can be a problem. Some of the kids can have soy but a

high percentage of them cannot tolerate it well either. We are doing

Dari-Free at our house... here's the link to the manufacturer...

http://www.vancesfoods.com/

.... if you order it, I highly recommend the mixing pitcher they sell to make

it in. It tends to settle, so you have to stir it up each time before you

pour.

We did goat milk for a couple of years with one son, but then we redid his

food screen and he had become reactive to goat milk so we had to remove it

from his diet.

One the bright side, Dr. G just told me that Rice Krispies is the best

cereal for 99% of the kids. He said " No " to Rice Squares and Cheerios.

Evidently Rice Squares has an ingredient that really bothers some of the

kids and Cheerios has gone to a " healthier " formula that is bothering many

kids as well. He said some kids do OK on Corn Flakes (we bought an

unsweetened brand and put Splenda on it to keep the sugar down).

There is soy ice cream sold in the health food sections of most groceries

now... our kids love the Tofutti Cutie ice cream sandwiches.

As far as a friendly Dr. in the Columbus area, I don't know of any, but

maybe someone will speak up who lives around there to share what they know.

Caroline

> From: Jill Boyer <sjillboyer@...>

> Reply-< >

> Date: Sun, 19 Aug 2007 19:33:35 -0700 (PDT)

> < >

> Subject: Re: Fungal Infections

>

>

> Thank you Caroline and Cheryl. I am printing the pdf

> pages off of the website now. I had eliminated milk

> from my son's diet several years ago but then I

> started allowing him to eat cereal with milk last

> year. I then allowed him to have ice cream for the

> last month and is behaviours were off the charts. I

> started the first dose on Friday and he had several

> BM's. He had diarrhea yesterday but he also got his

> appetite back. He had a strange meltdown today and I

> was so worried that I opened the back door and let him

> out in the rain just to calm him down. He loves the

> outdoors. Well, I can hide the ice cream from him but

> he is addicted to Rice Krispies. I will check out the

> rice milk recipe and see if he will eat the Rice

> Krispies with the rice milk.

>

> If any of you know of a doctor in or near

> Columbus, OH or a doctor that is familiar with the

> protocol, please let me know. It is like pulling

> teeth to get my doctor to test anything. I am sure my

> sister-in-law would be very interested in this as

> well.

>

> All the best,

>

> Jill

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Jill,

I just realized that the rice milk you are talking about was the recipe off

of Dr. Goldberg's website. Since that is made from white rice that would be

OK as far as I know!

Caroline

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Thanks Caroline. I might just try that manufacturer

that you linked to though. That is wonderful that Dr.

G approves of Rice Krispies. I like that cereal too.

As far as finding a doctor in Columbus, it might

be better to start changing some of the pediatricians

(and everybody else for that matter) minds about

autism and how it should be treated. I am really

excited about Dr. Goldberg's research (especially the

cytokines). I hope he does get funding for it. Do you

know if he has had academic researchers request grant

money from Autism Speaks?

Oh, the tantrums. My 6 year old will even wake up in

the morning with a grudge about something that

happened the day before. I look forward to putting a

stop to that.

I have so many more questions to ask you guys but I

will save them for tomorrow and the next day.

All the best,

Jill

--- Caroline Glover <sfglover@...> wrote:

> Jill,

>

> I just realized that the rice milk you are talking

> about was the recipe off

> of Dr. Goldberg's website. Since that is made from

> white rice that would be

> OK as far as I know!

>

> Caroline

>

>

>

>

>

________________________________________________________________________________\

____

Sick sense of humor? Visit TV's

Comedy with an Edge to see what's on, when.

http://tv./collections/222

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  • 2 years later...

Pat,

Fungal infections in CLL patients are very unusual. There are a few, namely

cryptococcus, which we do see. The quick growth is likely a reflection of the

organism. The most important thing is to wait and see what the culture

confirms.

Rick Furman, MD

>

> A friend is dealing with serious fungal infections as a complication of

> her CLL and recent rituxan treatment. Her culture grew something right

> away ( 2-3 days, instead of weeks). She is wondering whether that would

> indicate the type of fungus or the extensiveness of the problem. Also,

> how accurate are chest x-rays when it comes to fungal infections of

> the lungs. Thank you for any information you might be able to provide!

>

> Pat

>

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I had a fungal infection (Aspergillus) in addition to Legionella and

Microbacterium Avium complex (MAC) last year, and had a recurrence of MAC this

summer. These infections were seen on a PET/CT scan with a followup lung biopsy

in order to distinguish them from lung cancer. I had a repeat CT scan this

spring, and sputum samples which were cultured for a few weeks. A few years ago

I had another biopsy which showed scarring from past Valley fever. I have also

had a couple of lung bronchoscopies, so I don't think an x-ray would be enough

to accurately diagnose which type of infection one might have. I believe the

medications used are very specific to the kind of infection, and have to be

given with care to be sure one does not develop immunity. I will be on three

different antibiotics for the next year or more, and have a CT scan coming up in

October to see if there has been any progress.

I was diagnosed in 2005, still on W & W. I have had two incidents of breast cancer

in 1991 and 2001, with no further recurrence. I wonder, however, if my CLL is a

result of past chemotherapy treatment.

Bente

________________________________

From: on behalf of pkennedy16@...

Sent: Thu 9/3/2009 5:44 PM

cll@...;

Subject: Fungal infections

A friend is dealing with serious fungal infections as a complication of

her CLL and recent rituxan treatment. Her culture grew something right

away ( 2-3 days, instead of weeks). She is wondering whether that would

indicate the type of fungus or the extensiveness of the problem. Also,

how accurate are chest x-rays when it comes to fungal infections of

the lungs. Thank you for any information you might be able to provide!

Pat

------------------------------------

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The most important risk factor for developing fungal infections is believed to

be long standing neutropenia. This is why we see fungal infections most

commonly in patients with acute myelogenous leukemia (AML). The neutropenia is

typically of 4-8 weeks duration, not what we see with chemotherapy that we give

for CLL.

The severe depletion of T cells (CD4 cells in particular) that result from

repeated treatments with nucleoside analogs can put patients at risk as well,

but they are still unusual.

There is no way to know what is likely by the speed of the culture growing.

Hopefully your infection will be sensitive to an oral anti-fungal agent. I hope

it works out.

Rick Furman, MD

>

> I must be the exception to the comment by Dr. Furman about fungal infections

being unusual with CLL patients. I have had more life-threatening infections

than I count - four this year (one currently in my lungs), not counting less

severe fungal infections of the skin, etc. I also have had a systemic fungal

infection a couple of years ago. And the amazing part of this tale - I have been

on full dose Posaconazole since March and have developed these four fungal

infections of 2009. Prior to 2009, I was taking Diflucan prophylactically and

Itraconazole sprinkled in with IV Caspofungin and IV Micafungin.

>

> What would predispose me to this rate of fungal infections, Dr. Furman? I am

very immune compromised after 13+ years with CLL, so I am assuming this to be

the cause. Are there other contributing factors that come to your mind?

>

> Also, Pat had posted a question for me because I am very ill right now with a

fungal infection in my lungs regarding the rapidity with which this recent

fungal culture grew out (less than a week) versus all of the others taking 3-4

weeks. Can you direct me (and the group) to a resource that lists fungi and

their time to growth on culture? I know it will be another 2-3 weeks before I

have the fungi ID'd and sensitivities that will confirm whether or not the IV

Micafungin has the lowest MIC.

>

> I appreciate your generous gift of time and knowledge that you share with this

CLL Community. Stacie

>

>

>

>

>

> In His grip,

>

> Stacie

> Current Age 45;

> CLL diagnosed at age 33 in 1997 after abnormal CLL in 1996 at age 32

>

> DISEASE HISTORY:

> 2007 Monthly IVIG begins due to being severely immunocompromised

> (Low neutrophils, Low IgG, IgA, and IgM as well as depleted T-Cells that never

recovered after Fludarabine)

>

> Multiple Anaphylactic Drug Reactions-Desensitization now required for all

drugs

> (Believed to be CLL mediated)

>

> Leukapheresis 1999-2001 to lower WBC levels of over 300,000

> RBC transfusions - Multiple

> Extensive use of Neupogen

> 98% marrow involvement since 1999

>

> CONVENTIONAL TREATMENTS:

> Fludarabine + Rituxan (5 days + 1 day) May 2002;

> Fludarabine (3 days) Sept. 2003;

> Fludarabine + Rituxan (4 days + 1 day) April 2004;

> Rituxan-4 Weekly Infusions - October 1- October 23, 2004;

> Half Dose Rituxan + Neupogen and Multiple Other " Alternative Additions "

> (8 weeks)- June - August 2009

>

> ALTERNATIVE TREATMENTS:

> Acupuncture and Chinese Massage

> 2008 Used Artemisinin and Butyrate which lowered WBC

> 1998 - IV Hydrogen Peroxide and IV High Dose Vitamin C

> 1999 - 714 X injections

> 2000 - Laetrile

> 2009- Currently taking with Half-Dose Rituxan: Singulair, Neupogen, Green Tea

Extract, Curcumin, Beta Glucans, Probiotics, Barley Grass and Kelp, Vitamin D3,

Alpha Lipoic Acid, Cranberry Extract, Fish Oil, Juicing, Anti-Cancer Diet

>

> " For by Me your days will be multiplied and years added unto your life. " -

Proverbs 9:11

>

> My faith and love of God: My source of hope, life, and healing.

>

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