posted
Ok, no one throw tomatoes at me, but I was wondering how bad it would be to get one little steroid shot.
Nothing has touched my air hunger, and it is getting a little out of control. I am going to see my regular doctor today who will probably try to give me a steroid shot. Is that ok? Are breathing treatments ok?
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
As a general rule, steroids are to be avoided. That being said there are times they are warranted. In the event of breathing issues, bells palsy ,they are at times necessary. You should be discussing this with your LLMD.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
My doc said life or death...I had shots for my back and it started the spiral down
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
I have got a cold, that has morphed into an upper respiratory infection that I struggled to shake. In past years my family doctor would give me prednisone to help my lungs clear the infection.
But right now I'm holding firm on not taking them.
Posts: 120 | From MA | Registered: May 2010
| IP: Logged |
posted
Steroids are contra-indicated for Lyme, as they lower the immune system and cause the bacteria to go deeper into the body.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
posted
Life+Lyme, why aren't you on something like a steroid inhaler? Try something like Advair which goes into the lungs, and is deactivated once it reaches its target-lung inflammation, and does not interract with the rest of the body. Steroid injections impact the whole body, not just your lungs. With that said, I have had to use high dose steroid tablets when my asthma gets out of control, last spring, and am doing very,very well this winter. If you have an underlying medical condition like asthma/allergies, try the inhaler, and/or breathing treatment. If you don't deal with the underlying inflammation, you could end up in the emergency room in stat asthma attack. My air hunger is related also to co-infections, and you need to aggressively treat these. I am on A-Bart (Byron White tincture) to deal with Bartonella. If you need to spot treat the lung inflammation, go for it, do steroids and breathing treatments. Talk to your llmd and monitor your lyme symptoms.
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I use ad air as well. My LLNP said to definitely continue using it. Asthma left untreated could be very dangerous. Once it is allowed to get out of hand there could be a need for lifesaving steroids.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
posted
So inhalers are not working for you, with or without steroids? I think the steroid inhaler would be a far better option than the shot.
Maybe look into "Oxygen Therapies", air ozonators, ozonated water, those type of options.
I just finished reading The One Minute Cure and I am currently reading Ed McCabe's Flood Your Body with Oxygen. I think these therapies might be able to help you. Worth a try.
-LAXlover 75% of family with Lyme
-------------------- LAXlover Posts: 371 | From Northern Baltimore Area | Registered: Apr 2010
| IP: Logged |
posted
LAXlover, Well they say that I'm getting oxygen, but my brain just isn't getting the memo. It just feels like I have a pillow over my face and my muscles are too weak to breathe.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i take steroid eye drops regularly with no problem
i took the prednisone 6 pack once with severe breating problmes-
a gi almost wanted to give them to me for severe ibs and he said if it became life threatening he would have to and the llmd agreed with this
but shots in knees and a topical steroid put in with electodes made me crash really bad. i belive the shots (only 3 and they only gave me relif for a short time)-they caused me to need knee replacemtnts...surgeon said he never saw such bad knees-0- cartilage left. a few weeks ago i let a PT put the topical one on a knee and my hips and shoulders and many other parts flared awful for 3 days. i had to stop pt and i am still recovering
my llmds said only use if life threatening or carefully in drops
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
Oh ok. Thanks for the heads up lpkayak! I'll keep that in mind.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
From page 12 of Burrascano Guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
And, page 20:
"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)."
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
My mother avoided steroids for her asthma for the past year because of her lyme. She ended up in the hospital for 5 days. Her lung capacity is now 20% and her pulmonologist (her PCP used to treat her - first big mistake!) has tried several treatment protocols and cannot get it up past 20. He has one more protocol to try and them he said he can do no more. He says she cannot handle any more lyme treatment until she gets her lungs back and her only choice possibly could be prednisone.
Now she is faced with the choice of not being breathe or lyme.
I suggest you find a pulmonologist so you dont end up being in the same situation as my mom.
All that being said, I don't know the difference between air hunger and asthma.
Posts: 832 | From Somewhere | Registered: Nov 2010
| IP: Logged |
posted
I'm so sorry to hear about your mom, terv. That's great advice.
I also don't know the difference between air hunger and asthma. My perception is that asthma induces a narrowing of the pathways and therefore reduced oxygenation. On the other hand, with air hunger you are getting enough oxygen your brain just isn't recognizing it. Correct me if I'm wrong!
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by Life+Lyme: LAXlover, Well they say that I'm getting oxygen, but my brain just isn't getting the memo. It just feels like I have a pillow over my face and my muscles are too weak to breathe.
One reason for body being oxygenated but not the blood in the brain would be CCSVI.
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
posted
I had a friend whose doctor prescribed prednisone for his seasonal allergies. He did not have any chronic illness at the time. He was a healthy 45 yr. old.
My friend is now deceased from complications stemming from his use of prednisone.
So I think you can guess what my opinions are about steroids.
-------------------- -chaps �Listen to the bell, Borrelia. It tolls for thee!� Posts: 631 | From A little place called, "we'll see." | Registered: Apr 2010
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Unless in a truly life or death situation, I would not take steroids. I recently had a very bad inflamed eye reaction and the eye doc wanted to give me a topical steroid cream. I wouldn't even use that.
For breathing situations, it's quite possible you have lung worm. If you have not yet treated for parasites, I would put it at the top of your list. I'm 7 months into treating and it has changed my life completely.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Steroids (a mild dose) caused me PERMANENT eye damage. A shot is way more potent than what did me in.
Also, Neil Nathan at the last ILADS conference said that steroids can destroy your last anti-inflammation pathway.
Only do steroids if it's life or death.
Is there something in your environment that could be contributing to your air hunger/breathing problems like VOCs?
Also, I agree with the poster who said to try to increase oxygen levels. I have a friend who has oxygen tanks delivered to her home and it helps.
Posts: 2839 | From California | Registered: Jul 2012
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
shame on the doc who prescribed long term steroids for allergys
a neighbor began taking them for joint pain and gained 100 pounds in a year and then stopped
another neighbor came over to tell me he was cured of his joint pain by steroids and 3 months later came back to say the pains were back 10 times as bad as they first were-he was pretty disabled
i also never got a good understanding of air-hunger
i had breathing problems: shortness of breath, bronchitis, chronic bronchitis, asthma (dx at 50) and wheezing...but i blamed it all on mold and guano exposure in a school building. it had gotten into the heat/ac system. my symtoms turned on and off with the fans.
i had a pulmonary specialist and at times was on 10 meds to keep me breathing. doc was extremely frustrated and sid this is going to turn inot copd.
the district moved me to another building. my symptoms went away untl i moved to this house last june. i later found out house is full of mold. i was sx free for over 10 yrs
i did have babs but it was before they started talking about air hunger. i couldnt do mepron. i had good luck with artemesia and later quinine and the "clind" one...not sure which it was
but if breathing is a problem...making sure you have good air is very important...and all the ppl who supposeably test and the testing it self are very unrealiable. it is a huge problem...needs as much study as lyme itself
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
It is scary to hear about all the damage happening from steroids. I don't want to get anywhere near them now.
TammyN, I know parasites are a problem for me, and I am trying to work on that now. I just wish lungworm was more recognized.
lpkayak, yes, air hunger is miserable. Unfortunately I haven't had any conventional medicine recognition for it yet since I'm getting enough O2. It just feels hopeless that not even my LLMD has been able to help.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Are you, by any chance, taking benzos? I recently tapered off klonopin and my lung issues, and mcs both have improved greatly.
They gave me steroids a few years back for 'atypical asthma' and I went down hill fast.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Terv, I remember reading someone on this board having really bad asthma (the need to go to the ER fast type of asthma). She treated for parasites and it got better. Many of us have lungworm and don't even know it. I think it was Gael (not sure though).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
Linky123, no, I'm not taking benzos, but another Lyme patient told me that takes the edge off the air hunger. Sometimes I just want something to knock me out because it's so miserable.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
TF, what about steroid hormones: dhea, pregnenolone, etc.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by Life+Lyme: Michael, what do they do about CCSVI?
It is scary to hear about all the damage happening from steroids. I don't want to get anywhere near them now.
TammyN, I know parasites are a problem for me, and I am trying to work on that now. I just wish lungworm was more recognized.
lpkayak, yes, air hunger is miserable. Unfortunately I haven't had any conventional medicine recognition for it yet since I'm getting enough O2. It just feels hopeless that not even my LLMD has been able to help.
I had angioplasty on the neck veins, that is what some people do. Some get reclogged, and having treated biofilm and to some extent parasites beforehand lessens that chance, as does keeping up with biofilm. Perhaps decent progress could be made with biofilm treatments without the angioplasty.
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Catgirl, regarding steroid hormones, I am no expert, but lyme doctors that I trust do test a patient's cortisol level and if it is low, they will prescribe a physiologic dose of cortisol.
That is a dose equal to what the body is supposed to be producing. So, it is just giving you the amount you should normally have. This amount of cortisol does NOT suppress the immune system.
Adrenal fatigue can occur with lyme patients, and cause their cortisol to be too low. My lyme doctor's book says that such a condition could cause damage to healthy tissue due to uncontrolled inflammation.
He recommends herbs and supplements to correct this but also says "when documented by laboratory testing, it may also be necessary to use temporary low dose oral natural cortisol (using adrenal replacement doses, NOT immunosuppressive doses) until the exhausted adrenal glands can recover enough to do their own job."
I just don't want anyone to get confused and think that oral steroids are OK to take when a non-lyme doctor wants to give them to them for other conditions.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Thanks TF. I forgot to ask my lyme doc last visit. My pcp prescribed them because I was really low. Temporary low dose sounds good to me. I've been energy testing for them and seem to need one more than the other. I only take them when my body wants them (love energy testing).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
You get "air hunger" when your body does not have enough intercellular (red cell) iron to bind oxygen. Lyme does not need iron for day to day living, but uses iron when it shifts to the L- form. Babesia and Bartonella DO NEED iron when they live inside the red cell and can rob the body of iron. They are not the only infectious agent to do so, but air hunger means that you do not have enough iron on board to transport oxygen to all parts of your body. Normally, it is the presence of carbonic acid a by-product of respiration that acts on the central nervous system to let you know that you are not getting enough oxygen. Carbonic acid is a weak acid that is converted from CO2. Your brain isn't fooled into anything, something is stimulating those receptors.
Posts: 482 | From Oregon | Registered: Feb 2011
| IP: Logged |
posted
Stinging Nettle leaf is a wonderful source of iron. Your can get capsules or in bulk at the health food store to make into tea. I take it regularly. I add some peppermint leaf for flavor. It really tastes like grass.
I have never had air hunger but gave it to my husband after chemo and radiation. He was very anemic and it brought his blood count back up quickly. Hope this helps.
-------------------- Lymer since 89 Namaste Posts: 52 | From Fort Worth Texas | Registered: Jan 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I just stumbled onto this thread while searching another topic. Indeed, as heatherene56 says, Nettle is wonderful. It really helped me with iron where the other options were so nauseating.
STINGING NETTLE LEAF (not root) - Links set -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Back to the question of the thread (everyone: please feel free to copy & paste this to your links collection page to post the next time this question is asked, as newcomers may not know and then get clobbered)
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links.
Regarding a very different reason, dose and Rx (even if in the same family - the approach is far different) than the focus of the steroid warnings above:
posted
Well this has certainly been insightful for me. I did not have realization of my lyme... Prednisone, steroid iontophoresis, and six cortisone injections - no wonder the past year has rained the fire of miserable hell.
I've had air hunger for a while, but my iron test results are consistently at the high end of normal.
Posts: 474 | From US | Registered: May 2014
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
For those who do not yet have the Burrascano Guidelines memorized, here are his warnings about steroids/immune suppressant medications:
"More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids." (page 4)
From page 12 of Burrascano Guidelines:
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants."
And, page 20:
"If treatment can be continued long term, then a remarkable degree of recovery is possible. However, attention must be paid to all treatment modalities for such a recovery- not only antibiotics, but rehab and exercise programs, nutritional supplements, enforced rest, and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example)."
It bears repeating--if there is any possibility that you have lyme disease, do not use these medications unless your life depends on it.
If your condition gets worse from such medications, you have your lyme diagnosis right there.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
Would this apply to the nasal allergie spray that is prescribed by Dr's. Nasaral I beleive is the name?
Posts: 486 | From USA | Registered: Jan 2012
| IP: Logged |
Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
There are definitely times steroid are warranted. Asthma being one of them. My LLNP told me never to hesitate using my steroid inhaler if needed.
Posts: 1748 | From United States | Registered: Dec 2011
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
IMO, there is an unusual amount of fear of use of steroids here.
If it weren't for steroids, I can't imagine how my-then infant/toddler/little girl could have breathed. Unless and until you see your child gasping for air, do not dismiss use of steroids, as they are life-saving when it comes to asthma.
And steroids are life-saving to organ transplant recipients as well. That's another issue that's not even up for debate. Just ask a transplant surgeon.
And many suffering from autoimmune disease (and yes, I KNOW all about TBDs and autoimmune) keep those diseases at bay with low dose steroids.
I have had to use steroid eye drops and steroid nasal sprays. I had no problem whatsoever with them and wouldn't hesitate to use either again. These are not systemic, so I do not understand the hesitancy others have in using them. Sometimes they are just necessary.
When someone has cataract surgery, one of the eyedrops is a steroid. Would anyone want to debate the necessity of that with a topnotch cataract surgeon? Not me. When someone has inflamed sinuses, steroid nasal sprays are prescribed to reduce inflammation. Does anyone know of another nasal spray that can do that? I don't. I'll take the word of the EMT.
You know what really got me all flared up? Extreme STRESS! NOT steroids!
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To be clear, no one ever says avoid steroids if required in a life threatening situation (or lungs, or eyes). But also know when that is and when there are other options.
You might have (and others may have also) overlooked this part of that link set -- and know that this is about those with infection:
"For a life-threatening situation, steroids can sometimes save a life, or lungs, or vision. However, if a person has an undiagnosed, untreated or undertreated infection . . . there is increased risk UNLESS infection is also being treated / monitored by a doctor who really knows what they are doing.
It is possible to receive steroids and do okay -- IF infection is also being addressed. Still, this would be for emergency situations for which there would be no other options.
See the detail below about how a LLMD would do that, best with 48 hours advance (if possible).
For most inflammation, there are other ways to address that.
Some are told that steroids sprays or shots & topicals do not become systemic. That is not necessarily true. Some have found out the hard way it was not true for them and one of the doctors in the posts addresses that.
Please read the full detail and talk with LL doctor in advance so it won't take you off guard . . . and know when and how emergency use can work in your favor WITH the right precautions. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While not every search return is noteworthy, both an internet AND a PubMed cross search for various terms of fatality with borrelia, steroids will bring up some important links.
Being informed is a very good way to reduce the stress in the long run for us, our families and for our pets.
Review by Tom Grier, MS (an expert microbiologist researcher in this field)
Excerpt:
. . . One question that Lyme patients and their doctors often face is whether or not they should use steroids such as prednisone to ameliorate their symptoms of Lyme disease.
In a small study done on healthy beagles, Dr. Straubinger, DVM, presented evidence that steroids should be used cautiously. He took four healthy young beagles and infected them with Lyme disease.
They became symptomatic with intermittent bouts of lameness that usually resolved in less than five days.
After the first year post infection, all of the dogs were culture positive and tested positive for active infection, but the dogs had few outward signs of active disease.
He then treated the dogs with prednisone corticosteroid for fourteen days.
Within five to eight days after the cessation of the steroid therapy, three of the dogs developed severe debilitating acute arthritis. Fifteen days later, the dogs were sacrificed and twenty-five tissues were cultured for the presence of organisms.
All of the dogs were still infected 566 days post-infection. . . .
(cont'd at link above) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As for the effects of steroids, even for a person in normal health, there is much to understand. Just one aspect to consider is bone loss.
. . . steroids or glucocorticoids) can reduce bone mass in both men and women . . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I don't take into account studies done on dogs when it comes to my health.
Yes, for sure, osteoporosis is a great concern when it comes to steroids, as it ought to be.
But me, I wouldn't be alive and posting here if it weren't for steroids (very long story). Been on them for over 35 years. Yes, you read that right.
And my DD wouldn't be here either. She needed to breathe. And the only way she was able to do that was with steroids.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I received steroid shots to my feet awhile back for painful neuromas. It worked in one foot, but not the other.
So for the other foot, I will get "open foot surgery" which is almost an LOL takeoff on "open heart surgery" I have no choice for that bad foot as I've pretty much tried all the other non-surgical options.
I have very bad bursitis in both hips and have been delaying steroid shots. One LLMD told me he could shoot my hips up with his naturopathic stuff. He told me he had a 60% success rate. But given that he had a zero success rate of getting my kids better, I declined his $$$ offer.
Trying to avoid the steroid bursitis hip shots, but if that's what will get me walking again with no pain, I'll do it. Kind of ironic that a good shot to the hips with steroids will be able to get me on the treadmill which will help build my bone density.
One size does not fit all.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
There are so many forms of steroids. I wonder has anyone asked a LLMD, if there are forms that are less dangerous to a Lyme patient. IE, inhaled - oral or nasal and even the shot.
I know for me, it was the prednisone that was an issue.
But I was taking it 3x a day for weeks at a time.
That stuff can be ugly to people w/o lyme.
I would ask a lot of questions. Maybe the shot is different?
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!
![[Frown]](frown.gif)
Printer-friendly view of this topic