109 replies to this topic

[tham]

If you wish to go on drugs for TB, it is better to start with
the first line ones, in order to minimize resistance.

Cycloserine is supposed to be a second line drug for resistant cases.
You can't get it on the market here, and it is controlled by the TB hospital
(National Tuberculosis Center) run by the Malaysian government.


As mentioned, the standard first line drugs are :

Rifampicin
Isoniazid
Pyrazinamide
Ethambutol

Note that the first three, especially pyrazinamide, has a tendency to
elevate your liver enzymes, so you should go for liver function
tests at your local lab weekly for the first two months.

Pyrazinamide can also cause gout and gastritis.

Take a good liver protective formula as well - artichoke, milk thistle,
alpha lipoic acid, phospholipids, etc.

Ethambutol may cause eye problems, so go for periodic visual acuity
tests if you can. Take lots of bilberry, blueberries, wolfberries, etc to protect your eyes.

Edited by tham, 29 January 2012 - 09:28 PM.

[Ark]

If you wish to go on drugs for TB, it is better to start with
the first line ones, in order to minimize resistance.

Cycloserine is supposed to be a second line drug for resistant cases.
You can't get it on the market here, and it is controlled by the TB hospital
(National Tuberculosis Center) run by the Malaysian government.


As mentioned, the standard first line drugs are :

Rifampicin
Isoniazid
Pyrazinamide
Ethambutol

Note that the first three, especially pyrazinamide, has a tendency to
elevate your liver enzymes, so you should go for liver function
tests at your local lab weekly for the first two months.

Pyrazinamide can also cause gout and gastritis.

Take a good liver protective formula as well - artichoke, milk thistle,
alpha lipoic acid, phospholipids, etc.

Ethambutol may cause eye problems, so go for periodic visual acuity
tests if you can. Take lots of bilberry, blueberries, wolfberries, etc to protect your eyes.

Thanks for your post, would there be any benifit from taking all 4 first line drugs at for the whole 6-8th months.

Edited by Ark, 29 January 2012 - 10:47 PM.

[tham]

The standard protocol is :

2 months on all four drugs
4 more months on the first two

Info is on the TB thread.

[tham]

Frankly, you should contact the CDC, tell them you
think you have TB, and I believe they would ask you
to come in and be tested/treated free of charge, if you
say you can't afford it.

I am not certain of your medical system there, but in this
movie some years ago, Angelina Jolie played a drug addict
with AIDS. A male friend finally convinced her to get treatment,
and I think he took her to the CDC. Her case taker there
asked if she had money, which she replied no, and they gave
her free treatment.

[tham]

Did the doctors check you out for sarcoidosis ?

Sarcoidosis may also present with pleural effusions and granulomas.

However, the granulomas in sarcoidosis are usually of
the noncaseating, nonnecrotising type. Rarely, they may
be necrotic, but are almost always noncaseating, which
distinguishes it from TB, whose granulomas are usually
caseating and almost always necrotic.

http://tulane.edu/so..._images_3_2.cfm


That is why a biopsy is important.


"..... when fighting tuberculosis, granuloma are formed, but they
normally break down and die (necrosis,caseation) after they have
done their job of killing and digesting the TB bacteria.

In Sarcoidosis these granuloma do not die, they remain healthy
(non-necrotic, non-caseating). "

http://www.sarcinfo.com/whyme.htm


" Tuberculosis is a type of granulomatous disease. In tuberculosis, the
centers of the granulomas become so isolated that the cells die from
lack of oxygen and from the toxic effects of the macrophages and
leukocytes that make up the granuloma. The dead tissue resembles
a soft, cheesy substance, so the process is called caseation (caseation
comes from the Latin word for "cheese"). Sarcoidosis, on the other hand,
is noncaseating. The tissue in the middle of the granuloma does not die,
and it does not resemble cheese. The presence of caseation eliminates
sarcoidosis and suggests an infection such as tuberculosis or a
fungal infection. "

http://www.healthcom...rcoidosis.shtml



NONCASEATING GRANULOMA

" Sarcoidosis is characterized by noncaseating granulomas. These are
different than the caseating granulomas produced by other diseases,
especially tuberculosis. Caseous necrosis is destruction of cells which
are converted to amorphous greyish debris located centrally in granulomas.
The term caseous ( L. caseus, cheese) refers to the gross appearance of
caseous necrosis which resembles clumped, friable cheese. "

http://www.meddean.l...rc/sarcpath.htm


" The granulomas of sarcoidosis are similar to the granulomas of
tuberculosis and other infectious granulomatous diseases. However,
in most cases of sarcoidosis, the granulomas do not contain necrosis
and are surrounded by concentric scar tissue (fibrosis). Sarcoid
granulomas often contain star-shaped structures termed asteroid
bodies or lamellar structures termed Schaumann bodies. "

http://en.wikipedia....oma#Sarcoidosis


Pleural effusions in sarcoidosis are rare, but when present they are
usually small and unilateral, i.e. occuring in only one lung.

" The presence of bilateral large effusions in sarcoidosis is unusual.
The reported prevalence of pleural involvement in sarcoidosis varies
from 0 to 5% [1] with unilateral, small effusions usually. Clinically
significant bilateral effusions in sarcoidosis are rare. There are few
other reports of sarcoidosis presenting with bilateral pleural effusions
but the quantity of fluid was small and clinically insignificant.[2] The
growth of one colony of Mycobacterium tuberculosis on culture from
the lesion in our patient reiterate the possibility that mycobacteria or
some of its components may be capable of inducing the immune
response and the pathological changes of sarcoidosis. "


http://www.jpgmonlin...Balasubramanian


However, pleural sarcoidosis appear to be more common
in Chinese patients.

" All 3 cases had been misdiagnosed as tuberculosis and received
anti-tuberculous therapy for a period of 1 - 12 months. A review
of the case reports and series in Chinese literature showed that
the incidence of pleural disease in sarcoidosis was 3.4% - 16.7%
in different series, and that pleural effusion in sarcoidosis was
misdiagnosed as tuberculous in most cases. "

http://www.ncbi.nlm....pubmed/16750040



Try joining one of these support groups for information.

http://nationalsarco...ion-ca.webs.com

https://www.inspire....eural-effusion/

http://sarcoidosisnetwork.org/

http://www.nsrc-global.net/

[tham]

Healthspan's vitamin D3 is on sale.

http://www.healthspa...4-c3193482.aspx

[Ark]

I'm going in for another TB test, my roommate has night sweats and a small tickling cough that won't go away, so i've convinced him to go too.

Edited by Ark, 31 January 2012 - 11:43 PM.

[tham]

I wonder why you are going for another TB test again.

If it's a tuberculin test, you are wasting your time, as I have repeatedly said.

If it's positive, then what ? It doesn't prove you have active TB.


You are just running round in circles. I doubt you will ever find a
solution to your problem at this rate. And you have yet to furnish
the other info that I had asked for.



Unless the lab you are going to has these newer tests -

MTD, the most sensitive
ELISA-IGRA, also quite good
ADA

http://www.gen-probe...s/amplified-mtd

http://en.wikipedia....losis_diagnosis


" There is no evidence to support the use of ADA tests for the diagnosis
of pulmonary TB. However, there is considerable evidence to support
their use in pleural fluid samples for diagnosis of pleural TB, where
sensitivity was very high, and to a slightly lesser extent for TB meningitis.
In both pleural TB and TB meningitis, ADA tests had higher sensitivity
than any other tests. "

http://en.wikipedia....osine_deaminase


Combine these with a blood picture showing ESR and CA125.

An ESR of above 10 mm/hr in men shows that your body is
fighting an active infection.

CA125, the ovarian cancer marker, is also elevated in certain
infections such as TB.

http://www.ncbi.nlm....les/PMC2788741/

http://meeting.chest...ract/128/4/141S


What you need, as I have emphasized several times, is a pleural biopsy.

I have already narrowed it down to either TB or sarcoidosis.
A biopsy is the only procedure which can distinguish between pleural TB
and pleural sarcoidosis.

Edited by tham, 02 February 2012 - 10:12 PM.

[Ark]

I wonder why you are going for another TB test again.

If it's a tuberculin test, you are wasting your time, as I have repeatedly said.

If it's positive, then what ? It doesn't prove you have active TB.


You are just running round in circles. I doubt you will ever find a
solution to your problem at this rate. And you have yet to furnish
the other info that I had asked for.



Unless the lab you are going to has these newer tests -

MTD, the most sensitive
ELISA-IGRA, also quite good
ADA

http://www.gen-probe...s/amplified-mtd

http://en.wikipedia....losis_diagnosis


" There is no evidence to support the use of ADA tests for the diagnosis
of pulmonary TB. However, there is considerable evidence to support
their use in pleural fluid samples for diagnosis of pleural TB, where
sensitivity was very high, and to a slightly lesser extent for TB meningitis.
In both pleural TB and TB meningitis, ADA tests had higher sensitivity
than any other tests. "

http://en.wikipedia....osine_deaminase


Combine these with a blood picture showing ESR and CA125.

An ESR of above 10 mm/hr in men shows that your body is
fighting an active infection.

CA125, the ovarian cancer marker, is also elevated in certain
infections such as TB.

http://www.ncbi.nlm....les/PMC2788741/

http://meeting.chest...ract/128/4/141S


What you need, as I have emphasized several times, is a pleural biopsy.

I have already narrowed it down to either TB or sarcoidosis.
A biopsy is the only procedure which can distinguish between pleural TB
and pleural sarcoidosis.

It's up to my doctors at the end of the day, I'm going to HealthPoint of washington and they do a TB test Mondays and Thursdays only.

They do it on a sliding scale/free , i don't know how to convince them to do anything else?

[niner]

i don't know how to convince them to do anything else?

Tell them about your uncle, and your exposure and illness in Fiji. Then tell them that you've been having night sweats and weight loss. Finally, tell them that you've infected your roommate, and you think that you might be an infection danger to society at large. Maybe that will get their attention. I agree with tham that yet another skin test is a waste of time. And for godsake, tell them what's already been done, so they don't repeat costly useless tests another million times. Gather up your medical records, write up your history, then see if you can find someone in the medical community who has two brain cells to rub together.

[tham]

If you ever come over to Malaysia, I'll take you to my current
chest physicians, my ex-schoolmate, Dr Yap Boon Hung.

He's also an FCCP. The advantage is he's based in a hospital,
one of the cheaper private ones, unlike Dr Yung, who runs a clinic.

http://www.tungshinh...y/doctor.htm#ci


For less than RM 3,000 (US $1,000), he'll perform a pleural biopsy
and bronchoscopy. Throw in maybe another RM 2,000 (US $700)
and you'll get a full spectrum of blood tests, which I think would
include the cost of sending the pleura sample to the lab for analysis.

You'll very likely be diagnosed within three days.

However did that Multicare center, a nonprofit hospital moreover,
charge you US$30,000 and not figure out what's wrong till now ?



# Granulomatous Process:

For all practical purposes, tuberculous pleural effusion can be
diagnosed only by the pleural biopsy. Pleural fluid smears are
rarely positive and the yield on fluid culture is very low and time
consuming. The combined diagnostic yield of histology and tissue
culture is close to 90%.


# Tuberculosis Effusion:

The incidence of tuberculous effusion is decreasing in affluent
communities. In hospitals that cater to the poor, the tuberculous
effusion could account for 20-25% of exudative effusions. In our
institution, tuberculous accounts for 5% of exudative effusions.


# Sacoidosis:

In the appropriate clinical setting, the demonstration of non-caseating
granuloma with negative pleural tissue culture can be considered as
acceptable evidence for the diagnosis of sarcoidosis.


Does the video work at your side ?

http://www.lumen.luc...ocedur/Plb1.htm

[tham]

During the biopsy, he will insert a chest tube into your pleura
to drain out the effusion, if you have one then. The cost of this
is included in the RM 3,000.

The tube will be left for a couple of days, while one or two liters
of murky reddish-yellowish fluid drains out onto a big flask left
on the floor beside your bed.

Thus you will be warded for at least two days. A two-bedded room
there costs RM 120 a day, or US $40. This includes meals.
Doctor will visit you on his ward rounds once or twice a day. I think
this costs RM 100 each visit, but he charged me RM 200 a day the
last time, and that was just one visit a day !

If you are diagnosed to have TB, be prepared to stay on at least another
two days, preferably four, while you are started on the four-drug protocol,
to give you sufficient time to get used to it, and also in case any adverse
effects come up. This should also give you a good needed rest.

A six-day stay at Tung Shin Hospital, a charity-based one sponsored
by many philantrophists, would currently cost around RM 3,000, or
US $1,000. This includes the doctor's ward rounds, medication, nursing
care, supplies, etc.

Thus your total costs from diagnosis to start of treatment would be about
RM 8,000, or US $ 2,700 at current rates.


Stay on for another month as an outpatient while he monitors
your liver function, adjusting your regimen if necessary.

Cost of four follow-up weekly consultations (maybe RM50 a visit) plus
four weekly liver function tests at RM 40 each test = RM 360.
Another chest x-ray at the end of the month, RM 33.

If all goes well, you are given five more months supply of the drugs,
after which you go home.

Cost of six months worth of the four-drug protocol, at about RM 200
per month = RM 1,200 (rifampicin makes up the bulk of this,
the other three drugs are fairly cheap).

Stay at a medium cost hotel, say RM 100 a night, for a month as
outpatient, plus maybe another more week touring the place = RM 3,000.
(Cheap hotels and budget travellers' inns are about RM 40-50.
If you want the five star ones, be prepared to pay RM 300 a night upwards.)



This means that if you have flown here in the first place, rather than
go to the Multicare Center -


Return air ticket - US $1,300 or RM 4,000, estimated.
Hospital stay - RM 8,000
Hotel stay - RM 3,000
Food - say RM 30 a day for 30 days = RM 900
Outpatient consultation plus liver function tests for one month = RM 400
Medication for 6 months = RM 1,200

Total RM 17,500, or US $ 5,900.

A fifth of the cost of what Multicare charged you, well diagnosed,
treated and with a full course of drugs.


If you wish, come back to see him at three and six months,
to let him check you out a couple more times.

Two return flights = RM 8,000
Consultation, liver tests and chest x-rays @ RM 120 = RM 240
Hotel and food for two days each time, i.e. four days @ RM130 = RM 520

This would come to another RM 8,760, or US 3,000.

Grand total, less than US $9,000, barely a third of the Multicare costs.

[Luminosity]

Most doctors will see a few patients for free or at a discount as part of a social commitment. The most effective way to get them to do this is to make an appointment and bring the money to pay but during the appointment, mention your financial and insurance status. After you've been seen as a patient they tend to be more giving. Or you can just contact them and tell them the situation in advance, if you want to.

I think you should see if the infectious disease specialist will see you for free. If not, try another appropriate specialist. You can also get free medicines from drug companies if you are in need, if your doctor fills out a form. Your situation poses public health concerns, and I would hope a specialist would see you for free. They do that sometimes.

If you do this, don't hold back needed information from the doctor. Help them get your medical records.

[tham]

Now I can understand why the doctors over there are having such
a hard time trying to find out what is wrong with you.

" It took 4 weeks for doctors to find out what was wrong with my lungs.
Four long weeks tests after tests, doctor after doctor ..... "

http://www.tbpatient...p.blogspot.com/


There is something wrong with your medical system over there. While it is
difficult to diagnose TB as pointed out earlier, any experienced FCCP (and
there are several in that Multicare Medical Centre where you went to) should
be able to do it within a week, in fact, three days.

My chest physician, Yap Boon Hung, an FCCP himself, diagnoses TB with
80 per cent certainty from a simple chest x-ray alone. A bronchoscope is
then done on same first day not to confirm TB, but to rule out lung cancer.

He does the tuberculin test, but as pointed out earlier, that is done more as
a formality, is inaccurate and cannot be relied on alone to confirm TB.

A pleural biopsy and blood is taken and sent to the lab on the same day, and the
pathologist's report, along with the full blood picture, coming back within three days,
confirms it.


I had told him recently about your recurrent pleural effusions, and he said that
fhis usually happens in two cases :

1. Congestive heart failure
2. Dialysis

Edited by tham, 03 June 2012 - 01:09 AM.

[cesium]

Now I can understand why the doctors over there are having such
a hard time trying to find out what is wrong with you.

" It took 4 weeks for doctors to find out what was wrong with my lungs.
Four long weeks tests after tests, doctor after doctor ..... "

http://www.tbpatient...p.blogspot.com/


There is something wrong with your medical system over there. While it is
difficult to diagnose TB as pointed out earlier, any experienced FCCP (and
there are several in that Multicare Medical Centre where you went to) should
be able to do it within a week, in fact, three days.

My chest physician, Yap Boon Hung, an FCCP himself, diagnoses TB with
80 per cent certainty from a simple chest x-ray alone. A bronchoscope is
then done on same first day not to confirm TB, but to rule out lung cancer.

He does the tuberculin test, but as pointed out earlier, that is done more as
a formality, is inaccurate and cannot be relied on alone to confirm TB.

A pleural biopsy and blood is taken and sent to the lab on the same day, and the
pathologist's report, along with the full blood picture, coming back within three days,
confirms it.


I had told him recently about your recurrent pleural effusions, and he said that
fhis usually happens in two cases :

1. Congestive heart failure
2. Dialysis

TB is relatively rare in the US compared to Malaysia, so a positive diagnosis isn't made unless a positive smear is cultured out which can take time. A single sputum sample isn't always going to detect TB, so additional sputum samples or testing a patient's lung washings, ect may be taken requiring 2-4 weeks or longer for a definitive diagnosis. Perhaps in those countries where TB is much more common, a suspicious chest x-ray, positive skin test, and biopsy of any indeterminent lung nodules is considered close enough (greater than 90% certainty), whereas in the US nothing less than a positive smear will suffice.

[tham]

TB is relatively rare in the US compared to Malaysia, so a positive diagnosis isn't made unless a positive smear is cultured out which can take time. A single sputum sample isn't always going to detect TB, so additional sputum samples or testing a patient's lung washings, ect may be taken requiring 2-4 weeks or longer for a definitive diagnosis. Perhaps in those countries where TB is much more common, a suspicious chest x-ray, positive skin test, and biopsy of any indeterminent lung nodules is considered close enough (greater than 90% certainty), whereas in the US nothing less than a positive smear will suffice.

Yes, a positive smear would obviously be 100 % specific for active TB, but It
would be foolhardy to try to diagnose TB from smears and even cultures alone.

If you do that, you are going to get LOTS of false negatives and end up way
underdiagnosing the disease.

The pleural biopsy is vital for eliminating most, if not all, of these false positives.
That was why I told Ark time and again to get a biopsy.

TB is virtually the only disease with caseating, necrotic granulomas; those
in sarcoidosis are always noncaseating and almost always nonnecrotic.

Throw in a high CA125, and you have TB beyond any doubt.



" Smears for acid fast bacilli are only positive in 10–20% (in fact only 5 %
in the second link) of tuberculous effusions and are only 25–50% positive on
pleural fluid culture. The addition of pleural biopsy histology and culture
improves the diagnostic rate to about 90%. "

http://thorax.bmj.co..._2/ii8.full#8.3


Even staining the pleural tissue, the most sensitive of all smears, yields
only 25 %. Culturing the tissue raises that to 56 per cent.

A biopsy showing caseating granulomas, on the other hand, raises it to almost 80 per cent;
if the granuloma is necrotic as well, you can be virtually certain it's TB.

http://www.archbronc...090862tab09.gif


" Demonstration of granulomas in a biopsy specimen is
diagnostic of tuberculous pleural effusion if the following
entities are ruled out: sarcoidosis, rheumatoid arthritis,
tularemia, and fungal disease. "

http://www.archbronc...&ident=13090862


Even if stains for sputum, pleural fluid and pleural tissue are negative, the
presence of caseating, necrotic granulomas and a high CA125 alone, along
with a bronchoscope to eliminate lung cancer, are diagnostic of TB.

They don't even need to bother with a culture.

That was exactly what happened in my case.

http://www.archbronc...090862tab11.gif

Edited by tham, 03 June 2012 - 09:58 PM.

[tham]

" Pulmonary TB was the only factor associated with a Ca-125 level >32.5. "

http://www.ncbi.nlm....les/PMC2788741/



" For estimation of the activity of tuberculosis, the sensitivity and specificity
of Ca125 were found 97·5% and 100%, respectively, at a 31 U ml−1cut-off point.
Our results suggest that Ca125 is beneficial in the determination of tuberculosis
activity and in differentiation between active and inactive pulmonary tuberculosis. "

http://www.sciencedi...954611101911217



Markedly-elevated serum CA125 in a woman with pulmonary tuberculosis.

http://smj.sma.org.s...01/5001cr11.pdf

[niner]

I had told him recently about your recurrent pleural effusions, and he said that
fhis usually happens in two cases :

1. Congestive heart failure
2. Dialysis

Well, those are both out in Ark's case, unless there's a lot we don't know about him. CHF & Dialysis are not consistent with being an MMA fighter. What's up with Ark these days, anyway? I haven't seen him around in a while.

[tham]

What's up with Ark these days, anyway? I haven't seen him around in a while.

Talking about the abominable snowman.

http://www.longecity...post__p__517624


In his profile :

" Disclaimer: My Profile/Forum posts are for fun ONLY .....
All of these posts are of a fictitious nature only and
should be treated as such. "


Does that mean this entire thread as well ?

[kurdishfella]

Inhale nutrients heals lungs and apply iodine and vit c for infections