posted
Yes, he told me that I needed to take prednisone for about 2 weeks. He prescribed a pretty high dose and told me to start going down after the first 3 days.
He said, "although not ideal, it's sometimes necessary."
I asked about all of the literature about not taking steroids and he said, "I don't agree, for your particular case, I feel it is needed."
I was in shock!
I have had severe inflamation with SED rates from 90 to 120 nonstop for over two months. My elbows are in flexion, my wrists, kness, shoulders, ankles, fingers and toes all take turns swelling.
He feels that the potential joint damage/tissue damage needs adressing. He said the infection is causing this inflamatory response and we need to "calm down my immune system."
Inflamation is my #1 problem with lyme and/or co-infections.
Wow!
Anyone have any luck *with* steroids? Yes, still in shock.
I'm planning on going with it because he felt strongly and it made sense when he explained it all. Still, I'm nervous.
I also have MUCH inflammation. The weirs thing is althogh I have a VERY high CRP , my Sed Rate is low at like 2.
My Cardio CRP is 19.1, it is not supposed to be above 3... Talk about inflammation. It has been like this for a year or more.
Good Luck!!
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Did he say if there are any alternative anti-inflammatories, like NSAID's (advil), or anything else?
Inflammation is not my main problem with TBD's, but I would be cautious.
It makes sense though, that you are going with it based on what your doctor said.
Posts: 2557 | From home | Registered: Aug 2006
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posted
yeah, I would trust him too. I did have to take prednisone for two weeks once during treatment for Lyme. I was in a very bad way.
It didn't set me back at all... but I was scared too!
As long as you are on antibiotics at the same time, it's not as bad for you.
He says NSAIDS damage joints. Probably true!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96116 | From Texas | Registered: Feb 2001
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Angelica
Unregistered
posted
I am not a MD or trying to get you to not take what your LLMD thinks best for you but I wanted to add I have noticed that some of Buhner's herbs from Healing Lyme do help with my inflammation.
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I understand you fears. I think I would also be very concerned. However, I have to agree with lymetoo. Your LLMD would not Rx it if he did not believe that your system was atacking itself in hyperdrive.
As long as you are on Abx it should stay the growth of the organism.
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
unexpectedills...my CRP is very high as well. It has fluctuated between 22 and 35!
Yes, I've tried NSAID and they seem to do nothing for me. He did give me a prescription for a anti-inflamatory for the pain if it continues to be a problem.
I've tried diet changes as well as MSM. My body is just out of control. The inflamation rises every night around 7-8. You can literally see it as it comes with a rash that increases as the joints start to swell. It resolves by morning to about 30% and then starts the cycle over again.
I'm trusting in him(LLMD) and his expertise. He feels that if I get rid of the inflamation, my body will start to really attack the Lyme. As well, he feels that I may be able to fight this with a whole lot less pain! Oh, I hope so.
Still, the prednisone really feels like the enemy. I guess it's the lesser of two evils right now.
posted
sometimes it is the only thing that will work for severe inflammation. I had to take it for inflammation in the brain. i was having problems with my vestibular nerve
Posts: 615 | From maryland | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
CURCUMIN (sort of a turmeric extract) is supposed to be great at decreasing inflammation.
So is SALVIA.
------------------
you might go to www.itmonline.org and search "inflammation" if you are interested in the Chinese Medicine articles.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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If Salvia can block endotoxins, the inflammation and pain may also decrease.
The present study explains some known biological activities of SM, and supports the clinical application of SM in the prevention of inflammatory diseases induced by Gram-negative bacteria.
Int Immunopharmacol. 2006 May;6(5):750-8. Epub 2005 Dec 6.
Protection of lethal toxicity of endotoxin by Salvia miltiorrhiza BUNGE is via reduction in tumor necrosis factor alpha release and liver injury.
Wan JM, Sit WH, Lee CL, Fu KH, Chan DK. Food and Nutritional Science Division, Department of Zoology, The University of Hong Kong, Kadoorie Biological Sciences Building, Pokfulam Road, Hong Kong, SAR, China. [email protected]
Lipopolysaccharide (LPS) has been implicated as one of the major cause of Gram-negative bacteria-induced sepsis that are life-threatening syndromes occurring in intensive care unit patients.
Many natural products derived from medicinal plants may contain therapeutic values on protecting endotoxemia-induced sepsis by virtue their ability to modulate multiple pro-inflammatory cytokines.
In the present study, we show that Salvia miltiorrhiza (SM) BUNGE or Danshen, used in treatment of various systemic and surgical infections in the hospitals of China, was able to block the lethal toxicity of LPS in mice via suppression of TNF-alpha release and protection on liver injury.
The ability of SM to suppress LPS-induced TNF-alpha release is further confirmed by in vitro experiments conducted on human peripheral blood leukocytes (PBL) and the RAW 264.7 macrophage cell line.
Immunophenotyping by flow cytometry shows improved T-helper cell (CD4) and T-suppressor cells (CD8) ratio in SM-treated PBL and splenocytes of LPS-challenged mice.
The drop in plasma glutamate-pyruvate transaminase (GPT) induced by LPS provides evidence that SM can protect hepatic damage.
The present study explains some known biological activities of SM, and supports the clinical application of SM in the prevention of inflammatory diseases induced by Gram-negative bacteria.
PMID: 16546705 [PubMed - indexed for MEDLINE]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
TREATMENT OF SYSTEMIC LUPUS ERYTHEMATOSIS (SLE) _WITH CHINESE HERBS
by Subhuti Dharmananda, Ph.D., Director, Institute for Traditional Medicine - 2001
EXCERPT:
As can be seen, all patients in the three evaluations took rehmannia and moutan, the classic herbs for treating redness due to heat in the blood.
Ching-hao was included in most treatments and is reported to improve the T-cell activities by promoting the suppressor cells (T-8 cells) so as to reduce the hyperactivation of the T-4 cells that promote the autoantibody production.
The herb chin-chiu was also used frequently; this herb is thought to provide a powerful anti-inflammatory action, thereby lowering the required dosage of prednisone to be used.
All patients took prednisone, the standard Western medical treatment for inflammatory autoimmune diseases.
Together, the herbs and drugs were said to provide prompt alleviation of symptoms, improve immunological parameters, and reduce the dosage requirement for drugs.
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Lily,
If you are POSITIVE you are seeing a REAL LLMD, then I think you have to trust him. Just be sure that you aren't seeing an imitator since they are quick to give us steroids.
In your case, it sounds like it may be your best bet. I was given them early in my misdiagnosis, but the type that REALLY caused me my nightmare was when it was "epidural steroid injections".
That is something I would definitely warn other lyme patients about. Good luck to you and please keep us posted on how it goes.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Yes, is your doctor an ILADS member, or at least is he familiar with all the ILADS literature ?
I think there is room for doctors to have other opinions and ideas, but I'd sure want them to have a full knowledge first of ILADS' works.
==========
Also, what plan do you have for adrenal support when you stop the prednisone? Ashwagandha, cordyceps or Siberian Ginseng will help them not feel hit like a brick at the change.
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
is your LLMD in Florida?
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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My daughter sees a very prominent LLMD in NY---she's very ill, and he has put her on Decadron (5-10 times more powerful than prednisone). Always for a short spurt, but it is sometimes necessary.
The goal is to use the steroids for long enough, and at a high enough dose--so that healing is sped up and tissues, swelling, and other "stuff" is repaired---But NOT too high of a dose or too long of a period so that damage is done.
My daughters LLMD has some patients who just "Feel better" taking a low dose steroid (with their antibiotic). Though he said they don't like to take it, and he doesn't believe it's the best case scenario---They are getting well, and feeling well.
Our LLMD got the idea from a Rheum. in CA (we're in NY). This Rhem. diagnosed the first reportable case of Lyme in CA. He has ALWAYS given steroids with the antibiotics ever since, to every patient (He uses long term abx.) --He has had great results.
I think there is something to be said about an auto-immune aspect to this disease, and as long as antibiotics are taken with the steroids, no harm done.
Good luck with your treatment!
-------------------- "The greatest revenge is to accomplish what others say you cannot" Posts: 6 | From New York | Registered: May 2008
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Inflamation is damaging and deadly. Inflamation is behind other illnesses such as heart disease.
Your doctor is being wise and because he understands the bacterial side of your illness, he will take precautions to keep them at bay while getting your inflamation under control.
I fought any immune suppressing drugs too, but my LLMD/Rheumatologist finally convinced me I have to take Enbrel temporarily to prevent any further joint damage.
Your system and mine react to die off with excessive inflamation. The inflamation is just as damaging and more so than the bacterias. The key is to control the inflamatory response while going after the bugs. So says my LLMD.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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posted
i forgot to mention, if you are on antibiotics too, that is somewhat safer.
my LLMD said when i was on steroids before and not on abx it is worse, and that this last time because I am on all these antibiotics its better
Posts: 615 | From maryland | Registered: Oct 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
My very reputable LLMD is also known to use small doses of steroids when inflamation is out of control.
Hope this gives you some comfort.
feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have never heard of steroids making things better, only worse - Burrascano coined the term "steroid disaster". Steroid shots destroyed me and I wouldn't take the smallest dose if someone put a gun to my head.
Also, friend recently prescribed steroids by her LLMD felt ok while on them and much worse later...it is simple they suppress the immune system giving free reign to the bacteria.
My ILADS LLMD would never prescribe them at any dose.
posted
[QUOTE]Originally posted by lymebytes: [QB] I have never heard of steroids making things better, only worse - Burrascano coined the term "steroid disaster". Steroid shots destroyed me and I wouldn't take the smallest dose if someone put a gun to my head.
Gosh, it can be so confusing! I thought the same way after reading all of the literature, including Burrascano. In fact, Iwas on them last year before I was diagnosed.
However, my LLMD now tells me that the inflamation is a bigger problem than the Lyme, at the moment. He said that my joints were in danger. As well, I guess there are risks for things such as hear attacks.
I'm learning that we are all so different and we all respond so differently to treatment.
There are other antinflammatories: several gelcaps of good quality fish oil, New Chapter Tumeric, for example.
Along with stretching in a warm pool, walking across the floor of a warm pool, if you are able. The pool makes you more bouyant, bringing less stress to joints.
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