(you know, the one that had "Crohn's Disease and asthma for 6-7 years and was cured of these things after 1 1/2 years of Lyme treatment but was beginning Babesia treatment)
was doing so very well until the end of the school year. She was not getting her rest because of studying for finals, end of year parties and such.
She developed her 1st cold in a long time. It progressed into a cough. Then she started needing her "rescue" inhaler the last day of school. (Hadn't needed that for 2 yrs.)
It's been downhill ever since and 4-6 doc appointments and phone calls.
We moved her to adding a steroid inhaler. Improved a day or two and then worsened.
Then we moved her to add in atrovent inhaler (lung "muscle relaxer"). Improved a day or two and then worsened.
Her oxygen level has been 94-96% range. Doc gave her oral dose of pred one time which brought her up to 100%. Didn't last.
So now we have ANOTHER appt for today and I KNOW they are going to want to give her the prednisone 5-7 day pack. I KNOW it will help her in the short run.
I DREAD the potential longer term consequences. I am a wreak :-(
Sometimes I just want to run away from it all. ALL I DO IS TAKE CARE OF SICK PEOPLE AND WORRY ALL THE TIME. So afraid her crohn's symptoms may return and the "asthma" may stay.
Any suggestions? Is there something homeopathic or less harmful that prednisone?
-LAXlover 75% or more with Lyme/coinfections waiting for hubby's CD-57 test to come back
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Obviously her prior asthma complicates things, but the cough could be a babesia symptom. For several years hubby had a mild unproductive cough until he treated his babesia more aggressively.
Buhner suggests cryptolepis for shortness of breath and air hunger so that might be worth a try.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Razzle
Frequent Contributor (1K+ posts)
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posted
An essential oils blend called RC rubbed on the feet (especially on the lung area - can look up a foot reflexology chart online) can help reduce airway constriction.
Also, some find relief with a salt pipe inhaler. Apparently, breathing salty air can reduce the airway irritation in those with Asthma.
And what about Singulair (it is generic now) - would that help any?
Homeopathy: Bryonia is for Asthma & bronchitis. May need to take it every hour initially, and then can reduce to every 4 hours or 4x/day until symptoms improve.
Nebulizers are also more effective than inhalers. Might discuss trying something non-steroidal in a nebulizer to see if that helps...
Acupuncture is another option to try, if you know of a very skilled practitioner...
I also agree with Bea that treating with Babesia herbs may help.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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glm1111
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I got rid of my SEVERE rush me to the hospital asthma using antiparasitic herbs and salt/c. Also had many bouts of bronchitis and pneumonia. Coughing can be from lungworms. Antiparasitics is something you might want to condsider asap.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- There are so many choices besides steroids. Here's a very promising one (in addition to addressing the full spectrum of infections, of course, including BABESIA and parasites that often travel with lyme - as Bea and Gael suggest above):
Topic: Minor surgery and steriods - complications from steroids that were not supposed to be administered. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Not sure if she is gluten-free &/or diary-free. If not, either (or both) can make a wonderful difference.
Gluten and Dairy can really affect lungs, too. Some detail here. Especially see Mark Bittman's NYT articles - and reader comments about DAIRY. Amazing recovery many made by leaving that behind.
GMO foods that destroy the GI Tract; Gluten; Dairy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Carol in PA has shared detail about this fabulous method.
Web search: HIMALYAN SALT PIPE, asthma
------------------------------
A LL ND (naturopathic doctor) or LL acupuncturist to guide her would be a very good idea. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
(Be aware that those in some categories can have zero or various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links,
BODY WORK links with safety tailored to lyme patients, etc. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Is she taking anything with acetaminophen in it? If so, that can CAUSE lung trouble.
. . . 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Powders, sprays, scents . . . fluffy rugs . . . fluffy decorations . . . are usually all best avoided.
You may also want to consider changing out any showerheads.
Web Search: bacteria, shower+head
---------
And, with your signature, loving LAX, if she has recently been in S. California or the SW U.S., you should consider VALLEY FEVER, too (a fungal infection spread by winds).
One of the top PBS News Hour just had a special report on that last week. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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Thanks everyone for all of the suggestions, I hope to be able to go through everything soon.
UPDATE: Just returned back from the pediatrician and he thinks he now hears MYCOPLASMA in the lungs.
He prescribed zithro and
a five day course of prednisone;-(
I will start her immediately on the zithro and of course I'm very hesitant on the pred. My mind is numb from feeling overwhelmed and frantic.
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Unless she is in a life-threatening situation, I hope you will hold off on the steroids. Please read articles in that steroid thread and consider other ways to reduce inflammation, starting with MAGNESIUM.
Does she have a LLMD?
If she has mycoplasma, that could be chronic. See Garth Nicolson's work. I'll be back with a link.
Most LLMDs know about mycoplasma, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- Prof. Garth Nicholson's research in Mycoplasma is to be commended. He does not treat. Still, he is THE expert researcher in this field. Here is his main site:
. . . Natural Emergency Medicine when used in emergency situations. . . .
More detail at main thread link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- You could probably find a SALT PIPE today, too. It really would not even have to be a "pipe" that you purchase. You can get the right kind of salt and devise a breathing tube from clean paper for now.
Salt Therapy has made huge improvements for many, world-wide. Some kids with lung illnesses have actually even lived for weeks in a salt cave, with great success. Somewhere in Europe, I think. Easily searched. For a start:
posted
I've given her the zithro, magnesium and she's watching TV with the salt pipe for now......
LLMD said to do the 5 day pred because this has been going on far too long.
Any other suggestions for supplements for the inflammation?
I have a ton of things in my "Dr. bag"!!!!! or my "bag of tricks" as my entire family calls it/them. Yes, I have several bags full of supps and herbs, etc, which I "hoard"!
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Keebler
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posted
- Well, glad the LLMD (who knows her well) weighed in on this and that abx on are board.
You likely keep them apart and just listed them together but, just to be sure, magnesium is best taken away from antibiotics. As can calcium, magnesium can lower the therapeutic dose in the body when taken too close together.
Hope she finds some good relief. -
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Ellen101
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posted
I went through a similar situation last winter. When I went to my docs office I sounded so bad they told me I had to go on prednisone. I told them I really needed an alternative. They agreed to let me try Qvar. Its a steroid inhaler. I made an appt with my pulmonologist for the next day. He took a listen and reiterated the need for prednisone and then lectured me how dangerous it was not to go on it. I went home and tried the Qvar as well as kept up with the nebulizer treatments telling myself if things got any worse I would have to go on it. Fortunately the Qvar helped alot. It is different than other steroid inhalers as it can be used more often, not like advair. BUT it is not a rescue inhaler. You should call and see if they would let her try it.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Keebler, darn it, I gave her the mag-tab SL (slow release) about 1/2 hour after the zith. I will keep them apart in the future. Thanks!
Ellen101, she did the QVAR (80 mcg)for the last week to no avail :-( ...... her primary REALLY tried hard not to do the pred but she is just not getting better.
I just got off the telephone with my Mom. I was telling her that I don't know what I would do or where I would be without all of my LymeNet friends and my LLMD, sniffle.......
THANK YOU EVERYONE!
-LAXlover 75% or more of family with Lyme & crap Waiting for hubby's CD-57 results etc.
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Razzle
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posted
Need Vitamin D for Prednisone to work, so she doesn't have to be on it for as long...and Vit. D also prevents steroid resistance with Asthma (I've read research on pubmed about this...).
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Catgirl
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posted
Lots of great advice above. But I wouldn't give her anymore steroids. Steroids drive lyme deeper. You can never undo the damage they cause. Treat her babs and most of all parasites and ditch the steroids.
Gael got rid of her severe asthma with parasite treatment. And I breathe SO MUCH BETTER since treating for parasites (profound difference). It took a while for me to grasp this parasite thing, but I'm so glad I did. My sinus issues/allergies are even gone.
Run from the docs who want her on steroids. It's a bad move, IMO.
Listen to Gael. Parasites are THE number one co infection with lyme (ILADS). Humaworm, parastroy, salt/C, etc are great alternatives.
-------------------- --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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Razzle
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I'm sorry, but I disagree with the statement that one can never undo steroid damage. There are nutritional and other things one can do to undo the damage.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Catgirl
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posted
I know people who only got worse on steroids, and their lives were never the same. It's just not worth the risk, IMO.
-------------------- --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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Ellen101
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Both of my LLNP's told me if I need prednisone due to my asthma to do it. Breathing comes first they said. People who sit here and tell you not to do it have never experienced what its like not to be able to breathe. She has to be able to breathe and if she needs the prednisone to do so then you do it.
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Catgirl
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quote:Originally posted by Ellen101: People who sit here and tell you not to do it have never experienced what its like not to be able to breathe.
Not so (assumption).
-------------------- --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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posted
My HOPE is that her Lyme is "gone" or at a very, very, very low level and will not have a negative affect on my daughter. She has not had her symptoms of crohn's for about a year now. We treated a long time after the "D", blood, and gut-pain went away. She was on the SCDiet for 5-6 years. she now can eat everything again.
I think that if her CD-57 wasn't so low, she would have been finished her treatment awhile ago. It's the CD-57 that is having our LLMD treat for potential babs. She has not tested positive for it (yet).
She is now age 15, has walking pneumonia and it makes her labor to breathe. She has been sick now for over a month and a half. The doctor could hear yesterday that her lungs were getting worse.
Last night my daughter told me that she NEEDS the prednisone and I felt a little guilty for not yet filling the script. So at 12:30 in the morning I found an all night pharmacy and filled the 5 day dose of pred. Couldn't wake her up to take the 1st dose.
She took her first dose just now.
As Otter said, hopefully the zith will keep whatever Lyme she has left "in check". She needs to be able to breathe. She is also still on the 3 different inhalers.
Razzle, thank you for the info on Vit D (D3 I hope) and I will put her back on that.
I DO plan on getting her back on the coartem and clindy asap this week for babs.
Being the parent of a sick child is IMO the hardest job there is. I have been doing it since she initially got sick when she was 7 years old. It has taken a toll on me. I am NOT the happy, go-lucky person I used to be. Making decisions about my healthcare is so much easier.
-LAXlover 75%+? of family with Lyme & crap
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
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Catgirl
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I feel for you Lax (hang in there). I hope she feels better soon.
-------------------- --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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Ellen101
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I think you made the best and safest decision for your daughter. I hope she starts to feel better soon. Keep us posted.
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surprise
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You are an amazing Mother. You have worked so hard, God bless.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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