posted
Hi, can anyone give me any ideas how to treat my daughter. She has lyme, so many positive bands I forgot which ones. Also coinfections, forgot which ones there too.
the reason i forget is because we all have it and i'm so fed up. i do know she has mycoplasma and chalmydia pneu, her numbers were really high on the blood test. i feel like this is why she has that cough.
she said it feels like someone is sitting on her chest, she can't get enough air, she is run down and whenever i ask the doctor about the cough he doesn't answer.
she is off abx because they didn't agree with her. she is taking byron white AL Complex and Myco complex. She is stuck at 6 drops of the AL because when she went higher she felt worse, 5 drops of the myco. i don't know if this is a factor but she has 2 copies of the 677 gene mutation.
i'm going to get a humidifier now. she said she feels like she needs a ton of cold air but she doesn't want the air conditioner.
Any ideas would really be appreciated. Thanks so much.
Posts: 47 | From usa | Registered: Nov 2011
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posted
do you think it might be croup? my nephew always got that(not getting enough air, barky cough) my sil had him put his head int he freezer and breathe in the cold air and that helped, but she did have to take him to the ER to get breathing treatments.
Posts: 287 | From somewhere | Registered: Oct 2011
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map1131
Frequent Contributor (5K+ posts)
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posted
Whooping cough is showing up more and more the last couple years. With her weakened immune system I'd let her pedi/doc see her to rule out somethings.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Buffyfan - she used to get croup all the time as an infant, was hospitalized too. i don't think its that because she isn't wheezing. she's had this for so long, it gets worse the more tired she gets.
map - ugh to the whopping cough i don't even know about that one. the only doc we have now is a lyme dr. i guess i will have to ask about that.
i trust the people on here more than i would trust our pediatrician. but i guess i have to use her for tests anyway. thanks for your help
Posts: 47 | From usa | Registered: Nov 2011
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AuntyLynn
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posted
An inexplicable dry cough and "Air Hunger" with the sensation of a "heavy chest" is a very common symptom of Lyme!
Have you tried having her bend over a sink with HOT running water and a towel spread out over her head, shoulders, and sink like a tent? (To form an instant "humidifier"?) This is a common technique used by asthmatics to give them some temporary relief.
You seem to be describing a dry cough when you say she is "barking." I would take her to another doctor (since your LLMD doesn't seem to have anything to offer on this problem) - maybe an allergist who would normally treat asthmatics. She might need to use an inhaler until she gets her TBDs under control.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
I would have her tested for whooping cough. I have a friend whose son had it recently. It does periodically go around despite immunizations. In fact, here in Cincinnati, when there was an outbreak years ago, 75% of the people who got it were immunized.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
This type of croupy/laryngitis type cough is very typical of Chlamydia Pneumonia.
It may be the reason the abx did not agree with her is that the doses typical for Lyme are MUCH, MUCH higher than those given for CPn and there can be severe Secondary Porphyria reactions.
You could try her on N-Acetyl Cysteine, which targets the Elementary Body stage of CPn. Available from a health food store. A runny nose reaction to NAC is very typical of CPn. http://www.davidwheldon.co.uk/NAC.html
Please check this out.... I went after Lyme and Co's for years before I discovered that CPn was the real culprit.
Posts: 250 | From canada | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Whooping cough can be fatal - and can turn so very quickly. It's vital to rule that out.
You say: " . . .whenever i ask the doctor about the cough he doesn't answer." Not sure which doctor you talk about as you say you only have a LLMD - they don't usually "do" emergency medicine.
He may be thinking of a more chronic cough with mycoplasma and chalmydia pneum. - and, yes, that can be rought but still . . .
I would have a different doctor assess her regarding whooping cough. Today.
At least call Urgent Care or search to find out some distinguishing symptoms that might set it apart from mycoplasma and chalmydia pneu. It's just too risky to guess.
Take the copies of those tests with you to the doctor - for their reference.
A humidifier can introduce some nasty germs into the air. There are some kinds that are not supposed to do that but "not supposed to" is relative. I've not looked at those too much but be sure they have a way to keep the water inside sterile.
Air conditioning can also introduce all kinds of germs into the air. Be sure the unit has been cleaned this season.
You might want to explore:
HIMALAYAN SALT PIPE method -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Just to be sure: hope she's not taking anything with acetaminophen in it.
. . . Even a single dose of acetaminophen can reduce the body�s levels of glutathione, a peptide that helps repair oxidative damage that can drive inflammation in the airways, researchers have found. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
oh my thank you all. i guess a trip to PM Pediatrics is in order. I actually like them. I have her out in the sun, I feel like she needs sun. Its been so rainy and grey here.
I want to panic now but I am going to hold it together. I can't believe how long Ive heard her cough and did nothing but pray. I guess sometimes you have to do more.
OK, I have to find her lyme file and hope I put everything in order and I will take her to the doctor. I hope really hope they don't treat me like i'm crazy. Because I feel like I am actually going crazy. Thank you all and I will let you know what happens.
Once again you guys are the best....
Posts: 47 | From usa | Registered: Nov 2011
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Keebler
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posted
- I would not necessarily share the lyme diagnosis (or the LLMD's name) - but do share the Cpn and Mycoplasma pn. diagnoses since they have so much to do with the lungs.
Do share whatever she is taking now.
A new shower head may also help. Those can harbor germs, too.
Good luck. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
Honored Contributor (10K+ posts)
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posted
any nose noises like crunches or whistling when she Breathes??'' if so check for asthma
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Keebler, I read your post too late. I didn't share the dr.'s name but I did tell her about the lyme and cpn and mycoplasma. She abruptly told me that I should go follow up with him there's nothing she could do. Thanks for the info on acetaminophen. that's what the dr. prescribed.
i asked her to do the pertusis (sp?) test and she reluctantly did and for good measure gave my daughter a nebulizer treatment. after it was over she said yep you still sound the same.
She said if my daughter did have whopping cough she would prescribe 2 weeks of zithro. I said she was on it for 2 months. She said 'well that doesn't make sense, there's nothing i can do'. bam out the door.
i really need to find a family doctor who isn't ignorant. does anyone out there know of one in the NY area? NYC, Westchester County, Putnam, CT, NJ. I'll go anywhere to not be treated like that again.
meanwhile, thanks for all of your suggestions. I am going to reread these posts and try again. the results will be back in about 7 days...
I will get a new shower head and randibear, she doesn't make any of those noises, its just a terrible barking dry ear piercing cough.
Posts: 47 | From usa | Registered: Nov 2011
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nefferdun
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posted
If bands 41 and 23 are positive, she might have protomyxzoa. It causes a dry unproductive cough. It can also cause extreme fatigue, a hoarse voice (comes and goes), cold hands and feet, brain fog, and air hunger. I was getting stabbing pains with it.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Keebler
Honored Contributor (25K+ posts)
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posted
- plshelpme,
I am so very sorry you had that awful experience. It's not the way it should be, at all.
I also can't believe they suggest acetaminophen when that can make lung symptoms so much worse by blocking glutathione.
Dr. K, a well know LLMD has written in his herx support guidelines to NEVER take acetaminophen, especially children because of how it blocks the liver's ability to make and manage glutathione
[and that absence can harm the liver and then the liver can't do what it needs to do for us - which is so much].
Well, at least you can be reasonable sure it's not whooping cough. But, still, I hope she finds comfort.
I've had that horrible, volcano force cough for months at a time. It can be very hard on the brain, they eyes, nerves in the neck - and the whole body.
Do search: sea salt inhalation therapy
Take care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
On the subject of Pertussis: children are routinely immunized against this at 2, 4, and 6 months, at 15-18 months, and again at 4-6 years.
Recent Pertussis outbreaks are thought to have occurred because these childhood vaccinations are proving not enough to provide lifetime immunity.
Persons at highest risk for Pertussis are newborn infants, and adults, especially older adults, who have not been immunized since childhood. For this reason, it is now becoming standard practice in most postpartum units to educate new parents about the risk of Pertussis to their newborn, and to offer adult boosters of the Pertussis vaccine to parents and caretakers of newborns.
plshelpme, I do not know how old your daughter is. If she is still in her childhood years, hopefully her childhood Pertussis vaccines are still protecting her from that threat, at least.
Does your daughter have a history of seasonal allergies? This may be something else you want to rule out, as allergy-induced asthma can sometimes cause a cough similar to what you describe.
What nefferdun suggests is also a possible cause. My younger daughter, who was diagnosed with Lyme, bart, and babesia, had issues with a dry, hacking cough that plagued her off and on for years. I have wondered if protomyxoa was actually the cause; but after years of abx and antimalarials, she is finally better, so hopefully this is a moot issue with us.
Posts: 962 | From Charleston | Registered: Jan 2002
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MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
With whooping cough, they will cough until they gag or are gasping for air. It happens more at night when they are going to bed and in the morning when they wake up.
I'm sure that is what my children had this winter. The first doctor said it was pneumonia and gave zithromax. The second doctor gave steroids. Neither diagnosed it as whooping cough. Though nobody coughed that horrible cough in the doctor's office.
Posts: 2258 | From USA | Registered: Aug 2011
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posted
These vaccines scare me. Ever since I entered this world of lyme I have learned so much. The hpv and chicken pox vaccines don't work so maybe the pertusis doesn't either. I don't know anymore.
I have her records right here. She is 16 years old and she has bands 41++, 45+, 58+, and 31, 39, 83-93 indeterminate. She has had this cough for over 2 years now, its just getting worse. Her mycoplasma result was 4291 - its negative <100 positive >320. I can't find the report on the chalymidia. ugh
I am going to research every response here. Thanks again. I'm so tired of all this research and worrying. I wish life was simple again and doctors were on our side. Posts: 47 | From usa | Registered: Nov 2011
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Keebler, I looked up sea salt inhalation therapy because the last thing I was in another drug in the house. It looks very interesting.
I see the therapy offered in spas which is probably very expensive. I also see portable inhalation machines. Do you know if they are any good?
Posts: 47 | From usa | Registered: Nov 2011
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posted
I don't see how she can get well without antibiotics.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I was thinking just of easing the airways to calm the spasming cough.
I would be very afraid of inhalation machines. Possibility of contamination - force, etc.
the salt inhaler is just SEA SALT, and a tube of sorts where the air would be breathed in.
Carol in PA has posted this but a search of Himalayan Salt Pipe should help.
This would be just adjunct, would not treat infection.
TuTu's post above may be about this episode or the diagnoses in general with just the drops being used not really able to target the infections adequately.
If she had trouble tolerating the treatment for Cpn and mycoplasma p., did the doctor suggest a full range of SUPPORT METHODS to go with that, Herx support and such ? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
You can buy a salt inhaler, or salt pipe, at Amazon.com or at eBay.com.
You inhale air that passes through dry salt crystals, picking up salt ions, that you breathe deep into the lungs. This reduces inflammation and kills bacteria and viruses.
Several people here who tried it said that they were able to reduce or stop their asthma inhalers.
The one I bought has salt from Hungarian mines, and Himalayan salt pipes are common also. I don't think the source of the salt really matters.
The last time I needed it was when I inhaled a bit of stomach contents. The stomach acid is hell on the windpipe, but the salt inhaler eased that sensation quickly.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
No support methods. I did receive a list of remedies for herxes when we first went there. I don't see how she will get better without abx either. Her twin sister just started the herbs too and she feels worse than ever. Joint pain is back, headaches, etc.
Today is my first day on disability because I just can't stand the fluorescent lights in my office, especially when its a sunny day. I can barely open my eyes. It makes me so sick and dizzy. We are all such a mess and I'm so tired and afraid this will never go away.
He just added cryptolepis to my regimen. The abx i'm on now is zithro 500 mg/day, cedfinir 1200 mg/day, and now cryptolepsis which I haven't taken yet because I'm just scared to take all of this. I also take atovaq, hydoxychlorequine, nystatin and a ton of supplements.
Shouldn't my girls be on atovaq too? I'm going to get a salt inhaler for my daughter now too and then I have to have a phone consult with the dr. i have too many questions. thank you everyone Posts: 47 | From usa | Registered: Nov 2011
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posted
So sorry you and your daughters are having to deal with so much. I agree that all possibilities need to be checked out, but have you considered Babesiosis? Air hunger and cough are typical symptoms.
Also, I don't know who your LLMD is, but have you considered consulting with the Lyme Pediatrician in CT? He's absolutely wonderful. Treated my grandson for Lyme and Bartonella. I can't say enough nice things about him.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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AuntyLynn
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posted
The cryptolepis is for Babesia.
Dr. H said it worked for some of his patients who had failed many prior treatments for Babs. It is an African Herbal (ROOT), that has been used there for generations to treat malaria.
Is it possible your girls were infected congenitally?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Barking cough is known as Whooping Cough. Just because your daughter had one abx that didn't kill the bacteria, doesn't mean that it's not Whooping. After all 10 days of abx doesn't treat lyme either.
Today the bacteria strains are meaner bigger badder than yesterday. But also her extremely taxed immune system would find it more difficult to help the abx eliminate a bacteria like Whooping Cough.
I'd visit an Urgent Care and see if you can find some intelligence there. So sad about the pedi. So sad.
Mom, the reason abx don't agree with her is due to the herxing/healing crisis that they cause. The only thing worse than lyme disease is treating lyme disease.
Maybe after you find the fix for this cough, you could go back to more natural stuff to treat the lyme & co.
This barking cough could be more serious for tx now, today. I hope you find some help soon.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Just in case there is anyone who does not realize this, Pertussis and Whooping Cough are the same thing.
Posts: 962 | From Charleston | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
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posted
- Good to keep that in mind.
Yet, all "barking" coughs are not necessarily the specific infection of Whooping Cough / Pertussis.
The intensity & characteristics of a cough can be for other reasons. But, since it's such a classic symptom for potentially serious (even sometimes fatal) Whooping Cough / Pertussis, it's vital to consider that -
- and as Pam posted above, consider that it may not be knocked out with one round of one Rx. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- plshelpme,
You say "No support methods." (end quote)
Sorry to say and, IMO, I just don't see how any treatment can possibly work optimally - and also be the best tolerated as possible - without adequate support methods.
The liver just can't do it. Nor can the adrenals. Nor nerve fibers.
You also said:
"I did receive a list of remedies for herxes when we first went there." (end quote)
I am puzzled, then as to why those are not being used, then. Unless, my term "support" and yours "remedies for herxes" doesn't translate to be the same thing?
You say: "I don't see how she will get better without abx either." and that being able to tolerate such is the stopping factor.
WITH the right kinds of support - various attempts for the right Rx combo - starting lower doses, etc. it is possible to get to a point where the treatment can be tolerated.
You might also consider a RIFE machine, though, if aggressive treatment looks unlikely to be tolerated under even the most carefully constructed plan. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You also say: " . . . 2 copies of the 677 gene mutation."
I know nothing about that but if it has to do with the ability of her liver to manufacture key peptides or other "things" necessary to be able to metabolize waste (detoxify) then, perhaps the RIFE with support methods may work better.
In a search for "677 gene mutation" I see that it's to do with Methylenetetrahydrofolate reductase.
So, do you have an expert in that guiding you? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
No, I don't have an expert guiding me on that. I was told by the llmd that they had 2 copies (identical twins), me, my husband and 2 boys have 1 copy.
He said don't worry about it, just take methyl protect. That's when I started to not feel so comfortable with him. I tried looking up info online. I found dr. (i forget his name) he has a whole website about it.
I am just so overwhelmed I don't know what to do anymore.
I didn't know what you meant by support. Yes i have tried the herx remedies on the list. Her cough stopped for now. until next time. in the meantime i'm ordering the salt pipe.
i do realize that pertusis and whopping cough are the same thing.
its very hard to try to deal with this because sometimes i can't even remember what i was doing/researching and i just turn the computer off.
no i don't have anyone who will help me that's why i posted here. thanks for all of your suggestions.
Posts: 47 | From usa | Registered: Nov 2011
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Catgirl
Frequent Contributor (5K+ posts)
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posted
It is so easy for any of us to be skeptical when it comes to lyme and company.
It sounds like you have a good doc but are just frustrated. Your daughter may be struggling so much because of her gene mutation. Try the methyl protect (it helps those with the mutation), which is exactly what she needs.
Also, don't fear the crypto. It really does help with babs (air hunger, breathing issues). It's helping me.
Also, I noticed she got a nebulizer. I hope they didn't give her some steroids with it. If they did, be sure to let your lyme doc know.
Thats funny your daughter said that about needing the cold air. I always do better in cold air (outside when it's snowing). Dry, cold air. I have had our a/c cranked this year (more so than any other year). It is hard for me to breathe when it's humid--the a/c (central air) takes the humidity out of the air (humidity makes me worse). I think it's a babs issue.
I'm on byron white too. It's helping. Listen to your doc (sounds like mine).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
chest xray sounds in order
Posts: 3905 | From USA | Registered: May 2007
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posted
I have an on/off dry hacky cough that I attribute to babesia. I just had a chest xray and it was normal. My sinuses have also been really plugged and strange the past couple months.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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posted
I would also look into mold. Some people are more suseptable to it. Many of the symptoms of mold poisoning are similar to Lyme. She could possiby have both tick borne disease and mold poisoning.
Any leaks in the house or possibly exposure at school? Carpeting in the house is the worst thing for mold.
You can take a urine test from Real Time Labs for the most accurate test for mold poisoning.
Just thought I would give you something else to look into.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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map1131
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posted
plshelpme, have you heard from doc on tests results yet?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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