I still have some swelling in my left knee that was probably caused by lyme. I am off medication and am wondering if it would be okay to have a cortisone shot put in to try to take away my bodies reaction to the lyme.
Posted by sammy (Member # 13952) on :
No, not a good idea. Once you've had Lyme you should not get cortisone shots.
Yes, they may temporarily help decrease pain and swelling but because of your history of infection you will be a great risk of having a Lyme flare. It's not worth the risk.
Posted by Hoops123 (Member # 18333) on :
Noooooooooooooooooooo
Posted by aperture (Member # 34822) on :
I agree with sammy. My husband's Derm gave him a steroid shot in his leg ulcer last week...big mistake. He's now flaring badly and the ulcer is growing even faster.
Posted by Lymetoo (Member # 743) on :
NOOOOOOOOOOOOOO
Unless you are in immediate danger of dying (as in unable to breathe, then OK) do not do it!
You should be ON antibiotics while taking steroids IF YOU MUST.
PS .. If you still have swelling you need to get back on antibiotics ASAP!
Posted by 79inpa (Member # 36019) on :
There is some swelling however it may have been from a torn meniscus. The person that ran my mri said that I have a tear in my medial meniscus. The surgeon that was going to operate cancelled my surgury date because he didn't think that the mri showed a tear. I do know that when I brake hard right my knee sorta locks and clicks a bit.
I was on three months worth of doxycycline. I am now being seen my a lyme literate nurse. I go back on the 18th to find out whether my body has switched from the antibodies that are present when my body is fighting an infection or those antibodies that my body has because it remembers that it has had an infection in the past. Does this sound familiar and right. Also I found out that I tested positive for babesia duncani when my nurse ran a frye smear on me.
How bad is this babesia? One internet site called it hemolytic...which I believe means that it destroys hemoglobin? Is this true?
I am still sorta depressed. Is this from the lyme disease? Is this from babesia? Is this from me looking back and realizing that I was right and the four doctors that saw me were wrong.
Posted by lymeboy (Member # 24769) on :
do ... NOT.... take ... a cortisone shot
Posted by Keebler (Member # 12673) on :
- Just Say: No. No. No. No. -
Posted by Keebler (Member # 12673) on :
Topic: what do STEROIDS actually do to us? -
Posted by Keebler (Member # 12673) on :
- I do not understand your saying that you are "off medication" -- as you only posted on Jan. 30 to find a lyme doctor.
I'm concerned that you did not find an ILADS-educated lyme literate doctor at all if you are "off medication" at this early date.
And, any real LLMD would have clearly advised: no steroids (as detailed in thread above, with the exclusion of an emergency but only then under LLMD guidance with antibiotics).
Another concern from your post:
you write you are hoping for such a shot "to try to take away my bodies reaction to the lyme"
I'm sorry to be the one to tell you this but, again, as you only just posted 2 months ago for a doctor, it's going to take much longer for treatment to work.
In case you have been unable to find a good LLMD, here are some links that explain a bit more about all that.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by 79inpa:
I was on three months worth of doxycycline. I am now being seen my a lyme literate nurse. I go back on the 18th to find out whether my body has switched from the antibodies that are present when my body is fighting an infection or those antibodies that my body has because it remembers that it has had an infection in the past. Does this sound familiar and right.
- NO, that does NOT sound right!! You need a Lyme specialist... one who knows what they are doing. You CANNOT leave babesia untreated or you will never get over the lyme.. NOR the babesia. It can be very serious.
Once you have a positive test, there is no need for further testing. You stop treatment when the symptoms are GONE.
Posted by Keebler (Member # 12673) on :
- I don't know how my eyes missed your last note but a couple of things jumped out at me:
1. Three months of doxycycline is not enough.
One single drug is not enough. Doxy causes the spirochete to go into a protective cyst form and that requires a different Rx (flagyl).
Plus, usually two antibiotics are combined, or rotated and sometimes they are switched around.
You write:
" . . . I go back on the 18th to find out whether my body has switched from the antibodies that are present when my body is fighting an infection or those antibodies that my body has because it remembers that it has had an infection in the past. . . ." (end quote)
There is NO LYME TEST NEEDED NOW.
None that will work to prove you do not have lyme because lyme simply can't be "cured" in 3 months' time, with one single drug.
There is no "cure" for lyme yet, either. Still, many have reached solid long lasting remissions and are just mindful to get prompt care if there is flare. But it takes many months to years to get there, for many.
You speak about lyme as if it should be in the past. It's just not that easy (well, none of this is easy at all).
I'm really sorry and know this is distressed but please hold on because others have gotten much better, you can, too.
You just need a real ILADS-educated LLMD. Now.
The care you've received to date seems not to be from ILADS-educated professionals.
--------------
and, YES, BABESIA MUST BE ADDRESSED.
I wish you the very best of luck, fresh air and lightness of heart. You can have the life you wanted - but it's just going to take a turn along the path. To a real specialist, I hope. -
Posted by Keebler (Member # 12673) on :
PROGRESS & SUCCESS STORIES -
Posted by nonna05 (Member # 33557) on :
NO BIG NO SHOT,,Gas on flame...Babesia is what gets my knee's .
If you're just starting,,,Doxy can make you feel better and then the rest of the story ,if it wasn't finished off..
I held myself somewhat up with Doxy or Zith or Rifampin in combo or what ever I could,, and stuff for pain.....
Had know idea what was wrong,but knew I was very sick....but then was given shots and I could no longer "GET BY".
Like everybody is saying ,,you need LLMD check/and stay away from shot.
Try mag. there's a gel you can rub on and a cream with aspirin or Advil
This might hold you over.
PLEASE listen to above statements,,,,,you will save maybe years of H___! Posted by 79inpa (Member # 36019) on :
If I want to try natural anti inflammatories what do you recommend?
Also the doctor that I am seeing has me on minocycline while waiting for my other tests to come back. So I lied about being off meds totally.
Posted by Keebler (Member # 12673) on :
Topic: Looking for long term pain management -
Posted by TF (Member # 14183) on :
"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." (page 12)
"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, low carbohydrate, high fiber diets, attention to food sensitivities, avoidance of stress, abstinence from caffeine and alcohol, and absolutely no immunosuppressants, even local doses of steroids (intra--articular injections, for example)." (page 20)
"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)
This is straight from the doctor's mouth. Nonna wishes she had known about this earlier. She got the shots and her life became unbearable.
As she has told you above, it is like putting gasoline on a fire. That's what happens when you take a shot that suppresses your immune system (STOPS IT from being able to kill lyme and other germs) when you are still sick with lyme and babesiosis and who knows what else.
If you take such a shot, you will regret it for the rest of your life. There are plenty of people here who did and who do.
Burrascano says it can cause you permanent damage. Evidently, with the immune system weakened by the steroid, the lyme is free to go into protective niches in the body where antibiotics have difficulty going. This way, you will NEVER be able to get rid of lyme disease or will need lots of IV medication and who knows what all else to get rid of it.
See these further quotes from Burrascano as proof:
"EARLY DISSEMINATED: Milder symptoms present for less than one year and not complicated by immune deficiency or prior steroid treatment." (page 20)
"LATE DISSEMINATED: present greater than one year, more severely ill patients, and those with prior significant steroid therapy or any other cause of impaired immunity:
1) Adults and pregnancy: extended I.V. therapy (14 or more weeks), then oral or IM, if effective, to same endpoint. Combination therapy with at least two dissimilar antibiotics almost always needed." (page 20)
It's good you are on minocycline, but you still will do yourself great harm by taking a steroid shot.
The shot is not absolutely necessary in your case, and mino does NOT qualify as "potent antibiotic treatment" per Burrascano. IV antibiotics would qualify as potent antibiotic treatment.
So, the rule is, go on IV antibiotics 48 hours in advance if you absolutely have to have a steroid treatment to save your life. If you don't need it to save your life, then don't take steroids under any circumstance until lyme disease and its coinfections are a thing of your past. I would not want to take any steroid for at least one year after being cured of lyme disease.
I strongly advise you to read and STUDY the Burrascano Guidelines so that you understand this disease and so that you don't unknowingly do something that will destroy your health for the rest of your life.
No drinking or smoking either. Read it in Burracano.
Posted by 79inpa (Member # 36019) on :
Alright tests are in from the doctors...cd 57 count was low...I gather that means that my white killer blood cells are still being repressed or they haven't come back yet. Doctors interpretation is that I still have lyme disease.
I also tested positive for a form of anaplasmosis,babesia, and mycoplasma. I did come back negative for bio film.
am on azithromycin 400 mg minOcyclin
Posted by 79inpa (Member # 36019) on :
Alright tests are in from the doctors...cd 57 count was low...I gather that means that my white killer blood cells are still being repressed or they haven't come back yet. Doctors interpretation is that I still have lyme disease.
I also tested positive for a form of anaplasmosis,babesia, and mycoplasma. I did come back negative for bio film.
am on azithromycin 400 mg minOcyclin
Posted by Keebler (Member # 12673) on :
- I agree with your doctor but not for the reasons stated.
I do not think it is wise - at all - to make such determinations from a CD57, or from any test so soon after starting treatment.
Now, I suspect lyme is still involved as you've not really treated for that long or with a combination of Rx including one that addresses the cyst form- but not because of the CD57 results.
I'm not sure you are seeing a real LLMD.
You write in a post above: ----------------------------------
"I was on three months worth of doxycycline. I am now being seen my a lyme literate nurse.
I go back on the 18th to find out whether my body has switched from the antibodies that are present when my body is fighting an infection or those antibodies that my body has because it remembers that it has had an infection in the past.
Does this sound familiar and right. . . " (end quote). ----------------------------------
No, that does not sound right at all.
That is NOT how lyme works. Sorry.
Looking at your posting history, I see that you posted in "Seeking a doctor" on Jan. 30 of this year and got just one reply.
Not sure who that was for, if that's who you saw / see . . . but I'm very concerned that you may not have a well-educated doctor. Of course, I'm only getting bits and pieces here and that's open for misinterpretation but
please be certain that your doctor is ILADS-educated and keeps up with ILADS research and conferences, etc. - even if he has his own methods (as most do), the science of lyme needs to be fully understood.
That explanation does not sound right at all.
While some things certainly sound right about your treatment and the doctor's willingness to accept lyme is still active,
that explanation you posted about antibodies - and the lack of combo treatment for that first 3 months - raise concern.
I hope I've just missed out and misinterpreted. Hope the yellow flags of caution that my eyes seem to see are just a mirage.
------------
I'm curious about what kind of test did you have for biofilm? That raises some questions to as I don't think it works like that.
Biofilm surrounds germs. It's just what it does. I didn't know there was a test to find or discount the presence of biofilm. -
[ 04-24-2012, 03:10 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor -
Posted by Keebler (Member # 12673) on :
- Re: Cyst form of lyme. Will your doctor address that?
Re: anaplasmosis, babesia, and mycoplasma.
Does your doctor have a comprehensive plan and timetable for EACH of these?
Hope so. It's good that the doctor has considered all of those, too.
Does he see the mycoplasma treatment plan as being extended? As with lyme, it is often a chronic persistent infection that requires combinations of Rx over 6 months to several years.
Hope you've seen the research work of Garth Nicolson, Ph.D. on this. Just Google that name. -
[ 04-24-2012, 03:45 PM: Message edited by: Keebler ]
Posted by 79inpa (Member # 36019) on :
My doctor has told me that I will likely be on medication for up to a year.
Posted by TF (Member # 14183) on :
Correct. Many take longer than a year. We are all different.
Posted by Caniggia (Member # 30479) on :
I have the absolute opposite experience with steroids. I've been diagnosed with Lyme, Ehrlichia and Chlamydia Pneu. I also have twitches in my tongue and all other muscle groups. Plus the fact that my diaphragma does not work and is bloated. All these things dissapeared when I took Cortisone (Betapred) 0,8 mg IV. I felt like the old myself for about 2-3 weeks then all symptoms came back. I'm beginning to wonder if the tickbite changed my DNA so that altough all medical tests (lyme excluded) come back negative the creation of proteins within all these functions are damaged. They may produce the goods but it s damaged from within.
Posted by nonna05 (Member # 33557) on :
Oh Man===I hope somebody wants to address Caniggia.. ..Opposite experience.
.ALL SYMPTOM"S CAME BACK
Did they have you on ABX's when they did this .Was it for pain or as part of the treatment.
I can only hope it was one and not very much
Posted by Keebler (Member # 12673) on :
- Caniggia,
Exactly: "then all symptoms came back."
the problem is not so much for the time while ON steroids but AFTERWARD.
Lyme was never gone, steroids subdued lyme, tricked your body and later - poof - borrelia blossomed creating what they call a "steroid disaster" detailed in articles here:
Topic: what do STEROIDS actually do to us? -
Posted by randibear (Member # 11290) on :
Hell-ooooooo. Anybody home??? No seriously... no shots...
Posted by Caniggia (Member # 30479) on :
quote:Originally posted by Keebler: - Caniggia,
Exactly: "then all symptoms came back."
the problem is not so much for the time while ON steroids but AFTERWARD.
Lyme was never gone, steroids subdued lyme, tricked your body and later - poof - borrelia blossomed creating what they call a "steroid disaster" detailed in articles here:
Thing is it didn't become worse than before the cortisone it is still the same. The problem is in my diaphragma, it does not help me breat normally. This completely changed after taking the cortisone, my body became calm, warm and automatic. I had my normal life back, there was not a single symptom left. Then when the cortisone left the body all symptoms came back slowly. It s a ****ty story I tell you.
Posted by Keebler (Member # 12673) on :
- I've had several similar experiences with steroid treatments. I felt fantastic for a while. I may not have been worse than before when they stopped all times, but after a while, I certainly did. (But I would have no idea about lyme for years to come.)
Steroids suppress symptoms. I love that about them (though, they can also bring terrible mood shifts and weight gain).
Steroids do not repair the body; they just allow the body to sort of shut off for a while. If infection is not present, this can give the body a chance to start a recovery process.
However, if infection is involved, once steroids are stopped, all bets are off and disappointment ensues.
That's why steroids are such a "Siren's call" - the allure is hard to resist but then comes the clobber, so to speak.
Google: Upledger, visceral+manipulation -
Posted by desertwind (Member # 25256) on :
I was on steriods for 4 months - 4 months of Dexamethasone following base of skull/brain surgery two years ago.
I THOUGHT I was lyme free and was wrong. My current LLMD's response to being on steriods that long was, "Well they may as well just have given you Lyme and Babesia!".
As Keebler mentioned about the suppression of symptoms; While I was on the roids, I did not feel bad at all - except for my moon face I thought all was grand. As a matter of fact I felt pretty darn good. I did not realize what was actually happening inside my body until I weaned off.
Now 2 years later, I am on four different meds and trying to get back to base line. The steroids almost ruined my life..
Be very careful...
Posted by Keebler (Member # 12673) on :
- Also important to know: if steroids were even somewhat tolerated some time in the past, that does not mean that they would be again.
I had been misdiagnosed as having lupus and steroids were sold as the only ticket in town at that time, or in my case, anyway.
Later, even with the dx of CFS, there was a sort time where prednisone had been recommended to help with energy. That's before there were thoughts about stealth infections causing CFS.
While my first experiences with steroids were just heavenly and I felt really good - even traveled 2,000 miles an landed my dream job. I had the world and a new life ahead of me. It all went so very wrong.
After relocating, subsequent steroid treatments were a huge disappointment and then just sheer terror when symptoms (that I'd later understand to be from lyme) blossomed big time.
I was literally bed-bound for a full year. It took more years to learn to walk, talk, read and write again. Thinking is still very limited.
I'm surprised I survived that worst year of it. I thought I would die and I also considered suicide very often. As I found out later, steroids can severely affect mood.
Some with shots in joints. At first, this may work. For me, second, third, fourth shots in various joints caused more and more terror to my whole body.
Same with steroid inhalers. Horrific six-month panic attack from just one whiff.
All before I was dx with 3 TBD. While treatment has been elusive, I am still so very glad that I understand what the ---- happened and why.
That's why I try to help others avoid that nightmare. -
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