tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
One of my doctors recommended this type of nasal spray for a chronic sinus condition that I have only on the rt. side.
It is through a compouding pharmacy. Has anyone here used this type of nasal spray? If anyone has experience with this I'd love to hear about your results. Thanks.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Steroids are never a good thing with lyme. Steroid sinus sprays caused me much damage. However, if an emergency situation . . .
. . . find out exactly what the all the agents will and then have your LLMD approve this before ordering / using. You'd need to be on serious systemic protection against steroid dangers that can occur with lyme.
Both OLE capsules (orally) and the OLE NASAL SPRAY help my sinuses a lot. Also a diet free of gluten, dairy, corn and soy.
Source Naturals Colloidal Silver Nasal Spray -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- ONE puff an a steroid inhaler caused me severe anxiety for 6 months. I've never had anything so bad in my life. My whole system was so revved it was torture.
I've had shots and pills, too, but that inhaler was disaster. Wish I had known then what I know now:
posted
Is it BEG spray? It's a nasal antibiotic for nasal staph. I have used it, herxed off it too. Just a couple of days for me. My culture came back positive but I didn't have really high counts.
Posts: 845 | From Northeast | Registered: May 2011
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I see that about 6 months ago you inquired about problems you were having with mold in your home. Not sure but I think you since moved. If so, still, you could be dealing with mold issues in your body and sinuses.
IDENTIFYING ENVIRONMENTAL ILLNESS & MOLD EXPOSURE IN PATIENTS WITH PERSISTENT LYME DISEASE
Lisa L. Nagy, MD Video $15.
(Excellent to get, even if mold is not an issue, this is full of great information.)
She is NOT A LLMD, however, she understands the kind of toxicity issues faced by many with lyme. She did not have lyme but overcame very serious MCS. She spoke at the recent ILADS conference.
It's a great presentation to see. The DVD can be ordered. Great detail about toxicity issues also here:
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I had a CT scan a couple yrs. before my Lyme dx. The report said I had polyps on that side so my PC referred me to ENT. ENT said nothing wrong despite me not being able to breathe through that side and still can't.
Consulted with another ENT, same result. Consulted with a couple Eye doctors due to issues with eye on same side, they said neurological, go see a neurologist.
The neurologist I finally saw couldn't see the difference in my eyes. Forgot to bring pics I have as it varies. I can always see it but it's not always obvious to others, only when it's really bad.
Also had a couple MRI's since Lyme dx which show lesions on same side. Every time I try to get help for this I get the run-around. No one takes it seriously yet it really effects my quality of life.
It is constant pressure in my rt. sinus, ear and eye with pain radiating down my neck on that side into shoulder with swollen lymph nodes in shoulder on that side and I can't breath out of rt. nostril and eye is screwed up on same side.
It bothers me daily yet I haven't been able to get a dr. to take it seriously in several years time so I've kind of given up. It saps so much of my energy to go to these doctors and I always know what they're going to say.
They just want to refer me to another dr. and I know it will be the same with whoever they send me to as well.
Oh BTW, yes I have tried Neti pot. Doesn't help. Just plugs up my ear worse.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Gross
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
My LLNP has assured me that inhaled steroids as well as nasal sprays are fine to use. they do not cause the same issues that oral or injected steroid do, such as prednisone. She advised me to continue on my inhaler for asthma and to definitely not discontinue it.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Thanks Ellen
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
posted
I alternate between a prescription steroid nasal spray called Veramyst and an atomizer with compounded Budesonide (an anti-inflammatory). This might be what your doctor recommended.
Both seem to have helped me ... and I've tried *everything* for sinus problems. Veramyst is certainly easier, as you have to clean the atomizer twice daily after use.
I buy my atomizer and meds through Sinus Dynamics. I tried buying the meds through a local drugstore, and they didn't dispense as well.
The idea is that the atomizer produces a much finer mist than a nasal spray can, and so it penetrates your nasal passages better and doesn't enter your bloodstream. I use the neti pot about an hour beforehand.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
| IP: Logged |
posted
That was my initial Lyme symptoms- pharyngeal pain, nasal pressure and inflammation.
For about 8 months I only had that and nothing else, then the other symptoms started. So during those 8 months I have seen several ENTs,who also told me that I have nothing and that my problem is neurological.
Until one day one ENT saw a severe inflammation in my nasal and pharyngeal area and put my on Nasocort. At first I felt much worse and told my doctor about it (no wonder I felt this way-you put steroids on bacterial infection- they love it!). He told me to continue and I did for 1 year. My inflammation eventually reduced,but never went away. Then I was diagnosed with Lyme. 5 years later I did years of abx, herbs, Rife. I`m on Photons and homeopathic now, the only symptoms that I have left and it doesn't want to go away (I think thanks to the steroids!!!)is the nasal and pharyngeal inflammation.
May be if you use it once or twice, will not affect you, but for sure the long use of the nasal steroids has systemic effect! If I knew that I had Lyme I would NEVER use it!
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Just wanted to chime in that I too take a prescription nasal steroid spray with the blessing of my LLMD. I have had horrible sinus issues the past several years and so I really need it.
Good to know I'm not the only one!
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
posted
Does anyone know if steroid cream (mometasone -- similar to hydrocortisone) is safe to use if you have Lyme?
Before I was diagnosed, I used it for rosacea flares on my lips. Once daily for three days, maybe a couple times a year.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Seems that just a few applications may not be so bad but, still, in the Drulle article, he is very firm to totally avoid even creams for the skin.
No. Topical steroid creams are to be avoided, too, according to one top LLMD cited in an article in this set:
Have you tried Calendula or Goldenseal balms or salves? L-Lysine lip balm? Shea Butter? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
posted
Thanks, Keebler ... I don't want to chance it. I'll try one of the balms you suggested.
Posts: 118 | From Northern Virginia | Registered: Apr 2012
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic