Urgent -- I Need Your Help

[Jestgar]

Hi Lynne,

Latent TB in kids is usually treated because the longer you live with latent TB, the greater your chances are of it becoming active.

Other than that, watch her liver

[hez]

Jestgar- Thank you for rembering the liver! I forgot they did blood work to make sure I had good liver function.

Hez

[Rusla]

I just found out that my daughter, Ashley, has been diagnosed with latent TB. She had to have a TB test at school, and the nurse told her that the reaction was the worst she had seen. They did a number of panels of bloodwork, and her "numbers" -- I don't know WHAT numbers -- were extremely high. A chest X-ray showed that it was normal, and they said that she doesn't have ACTIVE TB.

The doctor at school said that she thinks Ashley contracted it when she was volunteering for Big Brothers / Big Sisters. She said that those kids are frequently exposed to TB, but do not have regular immunizations or testing, so it's difficult to know.

At this point, they are putting Ash on medication -- I believe she said INH (???) for 9 months. She will have to have a chest x-ray once per month during that time to make sure that it has not become active. She said that the doctor indicated that increased stress levels, illness, and I can't remember the others can induce the TB to become active.

My books are all in boxes and piled 5-high. If anyone knows ANYTHING about this, I would appreciate any information you can give me.

Also, if you are the praying type, I would appreciate those, too.

Thank you,

Lynne

Lynne,

I presume she has had the Manitou test. She does not have TB but it means she has been exposed to TB if she shows levels on it. It can go away as my mother many long years ago showed levels on the Manitou test and her mother died from TB. But that was way back when they had no way to treat TB. My mother no longer shows TB levels. Sometimes it does leave and sometimes it just stays dormant. But for her to show levels she had to have been near a person with active TB.

Just she has to be careful for awhile. It is not as bad as it used to be. At one time if you showed latent TB levels you could not leave the country. Just keep an eye on it for awhile.

[Fiddle-Faddle]

What a shock and scare for you, Lynne! I'm so glad grp is on top of it--sounds like he probably knows and understands more about it than most doctors. (But, yeah, I'd be happy to bring over some chicken soup anyway!)

[tiredofdoctors]

Thank you all for your information . . . I feel a LOT better. It was so scary when I first heard it -- with her asthma, etc., I was so worried. Now that I've heard other's stories, and know that it is going to be okay, I'm not nearly as scared. Thank you. Lynne

And the chicken soup sounds like a VERY good idea . . . . our friend Helen passed away three months ago. She was the stereotypical "Jewish Mother" -- Ashley would have had Matzo-Ball soup for the next 9 months! Fiddle Faddle, even though she didn't believe in heaven or hell, I still know she's looking down and smiling, shaking her head "yes" at you!!!

[Judyin Philly]

Lynne..love the new avatar (just to give you something to cheer up about)

Has she been on a antib lately???? i know your getting great info...I just remember that when working at the hospital we had to get tested every year. One year they asked if I'd been on a certain antib and i had so they told me not to take the test for 1 month as it would not be a correct reading. Now i'm assuming she had blood work done so guess this is a mute pt..but just thought i'd add it.

sorry i didn't see you thread as i wasn't on today.

judy

[gfp]

gfp -- just talked with my daughter again -- she was blown away by your offer. She is going to call the doctor to see if they want to do that, and if so, we'll get it in motion. We will reimburse you ANY costs that you incur during the process, should this happen. She said to thank you VERY much. Much love to you, Lynne

Lynne, other than the hospital I can't forsee any costs.... seriously my American friends are conspiring ...

I have a friend an ex air steward keeps offering me airmiles, her mom in Pensecola telling me I must visit and sending me packages ... my friend Chip in Boston offering me his beach house in NE and jeep if I will just get a biometric passport and visit.(also trying to blackmail me that he won't visit me if I don't visit him and his lovely wife but I found out last night he's going to crack and visit first).. and places in NYC, DC, Seattle ... the list goes on.....

I never thought anything of my immunity ... well when I was 11 I thought it was inconvenient getting a jab...i didn't need and I never really figured out why they were so perturbed by my immunity..I mean why do the test if they just jab you anyway?

Then since last night (European time) I looked around and apparently natural immunity is some genetic freak (no surprises I guess)...

Either way I talked with my girlfriend and I'm going to ask my (our) Dr. about donating blood for research anyway!

I just talked to my friend the air steward and she said she donates her DNA (she has a double cancer gene) ... and she just told me her mom has been doing more celiac research on me (products and telling Judy she has to really scrub her kitchen and use seperate utensils (Clydie your not here are you))

Other than that the side effects of treatment are largely age related but worse for females on the whole....

I think most of the horror stories about the treatment are probably exagerated by the fact they are concentrated in very poor communities and third world countries with no follow-up and monitoring.

Best wishes and good luck!

[Canadian Karen]

Lynne,

Sorry I missed this whole thing. I feel terrible now about not being there for you! Sounds like you got excellent information (knowledge is power!) and gfp, what can I say? You rock!

Will try to call today..... Rhiannon has a birthday party today, other than that, not too busy......

Wuv ya Darlink!

Karen

[happygirl]

Lynne, sorry to hear that you are going through this. Please keep us updated on Ashley's journey. xoxo

[lindalee]

Hi Lynne, Sorry to hear about this. Carla's right about the B complex. Prayers to all. LL

[tiredofdoctors]

Thank you all, so VERY much.

gfp -- my daughter's doctor didn't call her back yet. She has an appointment, I believe, in the beginning of the week. I have to say again -- you are amazing. I can't thank you enough for offering this. If I am not mistaken, you are atheist? I have been yelled at by MANY a family member that I must be an "agnostic" -- because I believe in a God, I'm just not sure yet in what FORM . . . . would it be okay with you if I said prayers of thanks for meeting you and for the type of person you are? I find your offer to be so generous . . . it boggles my mind.

Again, thank EVERYONE for your information, your kind words, and your prayers. So far, Ashley seems to be taking it in stride -- not that we haven't shared our moments of tears on the phone. Her boss wanted her to work 9 hours today -- in retail. She told him that the last blood panel was not in which would determine whether her TB was latent or active, and that she could still be a potential threat to her co-workers and customers. He told her to come in ANYWAY! She asked me to call them . . . for some reason, I thought that was so cute -- and I felt so needed again. ("Mommy, FIX it." came to my mind, like when she was little) I called, the manager was "at lunch and not to be interrupted." So I was asked if I wanted to speak with the co-manager. She is from India -- when I told her the situation, she said, "Oh NO -- she does not need to be working right now. Tell her to call me when it is okay for her to come back to work . . . . and tell her I hope she is doing better." Quite a difference of opinion, huh? She was a very sweet lady, and I thanked her very much.

So, I think we have heaved a collective sigh of relief that it is going to be okay, that she is going to get through this and continue to be happy and healthy, and that this is just another bump in the road. I think she would have preferred that this bump not happen so soon in her marriage, but evidently she DEFINITELY takes after her mother! My gluten intolerance "bump" happened about this far into our marriage . . . but we didn't know what it was! Like mother, like daughter, I guess!

Love, love, love and hugs to you ALL,

Lynne

[tiffjake]

I just found out that my daughter, Ashley, has been diagnosed with latent TB. She had to have a TB test at school, and the nurse told her that the reaction was the worst she had seen. They did a number of panels of bloodwork, and her "numbers" -- I don't know WHAT numbers -- were extremely high. A chest X-ray showed that it was normal, and they said that she doesn't have ACTIVE TB.

The doctor at school said that she thinks Ashley contracted it when she was volunteering for Big Brothers / Big Sisters. She said that those kids are frequently exposed to TB, but do not have regular immunizations or testing, so it's difficult to know.

At this point, they are putting Ash on medication -- I believe she said INH (???) for 9 months. She will have to have a chest x-ray once per month during that time to make sure that it has not become active. She said that the doctor indicated that increased stress levels, illness, and I can't remember the others can induce the TB to become active.

My books are all in boxes and piled 5-high. If anyone knows ANYTHING about this, I would appreciate any information you can give me.

Also, if you are the praying type, I would appreciate those, too.

Thank you,

Lynne

(I didn't read the whole thread, so I am not sure if you replied later with more info..just wanted to throw in this info before my gluten-free noodles turn to mush...making dinner)

My husband has latent TB. He will start INH when he gets states-side again, because the meds are hard on the body (so the docs say). He is fine. No biggie. I know you are worried, I just don't want you to freak out! He gets chest x-rays when he gets a cought to make sure that it has not become active. But if it did, it is very treatable these days, once detected. Hope she is well on her way to INH! Tiffany

[penguin]

Lynne - No advice here, but you and your daughter are in my thoughts!

[gfp]

Thank you all, so VERY much.

gfp -- my daughter's doctor didn't call her back yet. She has an appointment, I believe, in the beginning of the week. I have to say again -- you are amazing. I can't thank you enough for offering this. If I am not mistaken, you are atheist? I have been yelled at by MANY a family member that I must be an "agnostic" -- because I believe in a God, I'm just not sure yet in what FORM . . . . would it be okay with you if I said prayers of thanks for meeting you and for the type of person you are? I find your offer to be so generous . . . it boggles my mind.

Lynn, feel free if it helps you .....

Look, its no big deal really. I am a big supporter of voluntary blood donation but most of my working life I have been excluded because of travel and the fact they don't want my blood when I have been in Africa/Asia in the last 3 years since screening everything is costly on a individual basis.

My girlfriend has a rare blood type and always donates... and once again I'm malaria free after 3 yrs so I can too!

My girlfriend is also signed up for bone marrow so if they need marrow she will get a call.... now that is scary... but as she says with her blood type its the least she can do.

So for me, I spent most of my professional life a bit peeved I couldn't contribute by giving blood ... people die all the time because of lack of blood for transfusions but I understand that by having to screen mine for everything from yellow fever to malaria its too expensive as a regular thing.

So finally I'm free of having travelled to certain countries in 3 yrs.... I can give blood and I find that something I never really thought much about (my TB immunity) might actually be useful and my only excuse for my American friends for not visiting is my non biometric passport which I'm opposed to on ethical grounds....

Helping someone with an illness completely blasts my stubborness on biometric passports out of the window ... really this is the only issue ... giving some blood? Heck I make more than I need (specially from a oxygen level), antibodies.. got them spare... so honestly the biggest thing I have to over come is the passport....

I'd be lying if I said I wouldn't look forwards to visiting all my friends..... and really this is the only thing putting me off. Yes, I'm stubborn but much as I might make life difficult for myself over my stubborness .... (ah ya get the point) ....

[debmidge]

Lynn

My sister, aged 42, was diagnosed with latent TB when she was about 20 years old and she has severe asthama too. She opted not to take the panel of anti biotics and knock wood she's healthy and had her second baby last year. It's believed that she was introduced to TB germ thru an elderly family member when she was a child.

Hope all goes well for Ashley and she goes thru this with flying colors.

Debbie

[ravenwoodglass]

Lynn, feel free if it helps you .....

Look, its no big deal really. I am a big supporter of voluntary blood donation but most of my working life I have been excluded because of travel and the fact they don't want my blood when I have been in Africa/Asia in the last 3 years since screening everything is costly on a individual basis.

My girlfriend has a rare blood type and always donates... and once again I'm malaria free after 3 yrs so I can too!

My girlfriend is also signed up for bone marrow so if they need marrow she will get a call.... now that is scary... but as she says with her blood type its the least she can do.

So for me, I spent most of my professional life a bit peeved I couldn't contribute by giving blood ... people die all the time because of lack of blood for transfusions but I understand that by having to screen mine for everything from yellow fever to malaria its too expensive as a regular thing.

So finally I'm free of having travelled to certain countries in 3 yrs.... I can give blood and I find that something I never really thought much about (my TB immunity) might actually be useful and my only excuse for my American friends for not visiting is my non biometric passport which I'm opposed to on ethical grounds....

Helping someone with an illness completely blasts my stubborness on biometric passports out of the window ... really this is the only issue ... giving some blood? Heck I make more than I need (specially from a oxygen level), antibodies.. got them spare... so honestly the biggest thing I have to over come is the passport....

I'd be lying if I said I wouldn't look forwards to visiting all my friends..... and really this is the only thing putting me off. Yes, I'm stubborn but much as I might make life difficult for myself over my stubborness .... (ah ya get the point) ....

If your traveling here to do a donation isn't practical would maybe the Red Cross or Doctors without Borders or some other organization help with collecting, processing and transporting the donation? Don't know if this would be an option but I thought I would throw it out there.

[jerseyangel]

If your traveling here to do a donation isn't practical would maybe the Red Cross or Doctors without Borders or some other organization help with collecting, processing and transporting the donation? Don't know if this would be an option but I thought I would throw it out there.

This is a good idea--I was kind of wondering the same thing--but I didn't know which agency would best handle something like this.

[Jennas-auntie]

Hi! If it's any reassurance, like you say most people with latent don't develop the full blown thing, and my husband tested positive for latent TB in a screening test for a job about 9 years ago. (Thinks he got it from working with people who had once been institutionalized and had been relocated to group homes, as that population has a higher rate, but you can get it from anywhere, even one exposure to someone, though that is rarer). He went on the INH for 9 months and that was that. I agree with the others though, it is important to avoid alcohol while you take it and to be very cautious if one is taking any other meds that get metabolized by the liver. I don't think she will need CXRs every year, I know they don't do that for him, but if he needed to be screened for another job for example, they would have to test him via CXR rather than the skin prick test, or if they ever decided to screen him again. Anyhow, I hope she does well and I think she will!

[High-Tech Mom]

Lynne,

So sorry to just read this thread - I've been overwhelmed getting my family gluten-free, and myself a low-fat diet (thanks to you!!), and haven't had a chance to catch up on the new posts. I don't know how you all keep up!

My husband had latent TB, and probably got exposed while traveling abroad. The previous posts are true for our experience too. He took antibiotics for 9 months, had his liver function regularly tested, and took the necessary vitamin supplements. The skin TB test, now that he has been exposed, will always return positive, so he will have to get chest x-rays for the rest of his life to determine if he is ever exposed again and it develops into active TB. Not cool, but that's the way it is.

Thankfully for your daughter, if it was a true exposure to TB, it was caught in the latent stage and easily treatable. My husband was in denial for a long time because he did the research, and apparently there are false positives on the skin TB test. I'm glad, however, for the family's sake, that he went on the 9-month antibiotic regimen.

Take care.

[happygirl]

hey lady....still thinkin about your family. keep us updated. xoxo

[tiredofdoctors]

Have been talking to Ashley daily, of course . . . I am trying NOT to meddle, trying NOT to be the interfering mother-in-law type, but she's my BABY!!! She called tonight . . . my parents told her that if she would quit her job, they would pay her rent . . . . they are very worried that with a full school schedule, plus working close to 40 hours per week, her immune system will collapse and she will go into full-blown TB. The doctor that she is seeing DID tell her that illness, fatigue, stress -- I can't remember what else -- could possibly trigger the TB to become active, and warned her of that. She asked me what she should do. I told her that was between she and her grandparents -- it was none of my business. She said, "I don't want to make anybody mad. What will Brandon think?" I told her that they had helped him during a few rough times, and quite frankly, it is none of his business. He really doesn't need to know. She said she still needed to think about it. (To be honest, they're living in the married dorm . . . NOT a lot of rent . . . . )

Then she began to tell me how much she disliked my son's girlfriend! That is a good sign . . . what she REALLY doesn't like is the fact that Brandon's girlfriend and I get ALONG, I think . . . !!!!! So, if feistiness is a good sign, she's there!

I do know she's really scared. She will get the final test results either tomorrow or Tuesday. She does sound very nervous when she is talking about the results. I have reassured her, though, that there are options . . . I have told her that gfp has everything ready to go -- all we need is a biometric passport . . . . so she is pretty much comforted by that. In the meantime, we're doing lots of hugs and I love you's over the phone . . . .

Thank you again for your help, interest, support . . . I'll keep you posted. xoxoxoxoxo Lynne

[AndreaB]

Thanks for the update Lynne.

It's nice of her grandparents to offer to pay her rent.

What is a biometric passport?

[gfp]

This is a good idea--I was kind of wondering the same thing--but I didn't know which agency would best handle something like this.

Its not so much impractical... beleive me I have so many friends begging me to come over ... I am just morally opposed to the biometric passport and being treated like an animal. (This isn't the thread to discuss biometric passports and the current US immigration policy ... and the UK's collecting of said same info .. I just don't agree with it and I'm a stubborn SOB ... (as I think you all know)) but if anyone wants to know you can pm me or start a thread in GAB.. but please don't ask here... else the thread will end up useless!

From what I read the natural immunity is different to the vaccine one. (for a start its apparently much more effective) but I'm guessing they would want to infect me with the same strain (hopefully a crippled one) and then use the specific leukocytes produced.

my parents told her that if she would quit her job, they would pay her rent . . . . they are very worried that with a full school schedule, plus working close to 40 hours per week, her immune system will collapse and she will go into full-blown TB.

Yes but quiting a job is equally stressful.... people can have latent TB for years and NEVER develop it...

BUT because the treatment is hard on the body its much better to tackle it younger....

Like I said earlier the horror stories are because its mostly found and treated in either 3rd world countires or very poor communities where the ongoing testing of liver function etc. are not carried out...

[tiredofdoctors]

As if the latent TB weren't enough . . . . .

Prior to Ashley getting married, she started developing nausea and vomiting - quite severe. We all knew (or thought) that it was due to the BCP's they were trying . . . (No, she's not pregnant -- should have prefaced that!)

However -- the doctor's office called her today and said that she was ineligible to take the INH due to her labwork. They said that the doctor wants to talk with her about it, and that she (the doctor) will call later today. They did not specify WHAT it was, but alluded to her liver panel . . . . . My daughter doesn't drink -- and the only thing that I DO know that she has had wrong was an abscess of her gallbladder because of a botched Belly Ring that she (we) had done on her 16th birthday. Her liver function panels have been normal since then, though . . . .

I am scared and frustrated. I am going to ask my daughter if she will sign for the physician to speak with me directly -- that way I can get some better information and ask a few additional questions. I am not saying that my daughter isn't capable or intelligent, it is just that she is only 20, and I don't know that she knows to ask the questions that need to be asked. Any suggestions?????????????

[AndreaB]

Lynne,

I know you are very knowledgeable and I really shouldn't even broach this since you probably know.....but has Ashley been tested for celiac/gluten intolerance?

If she has elevated liver enzymes it could be an indicator of celiac. My AST and ALT were elevated 2 years ago, last year they were normal but I don't know if the pregnancy threw things off. I had read that they could be an indicator that the person has or is developing a gluten intolerance. My doctor went through everything and ended up diagnosing fatty liver....more than likely the start of celiac.

I don't know about the nausea and vomiting though.