posted
I went on a two week course of prednisone as per my LLMD. I am about 1/2 way through.
As expected, most inflamation has gone. My SED rate was super high. We will check it again in a week.
I am off ABX for another week. LLMD has been trying to understand changes in bloodwork.
So, off ABX and on prednisone, I am 95% well. I just have a little elbow inflamation, still.
While on ABX, these past two months, I suffer with intense inflamation/swelling/SED rates. I have fevers/nausea/chills/sweats/sharp pains and terrible CBCs.
I am supposed to go back on ABX after two weeks of prednisone is concluded. LLMD says that I will either just get treated and feel fine through the process since we got a handle on the inflamation. OR, he says that the whole process will start over again and I will get all of my symptoms back.
It appears the bacteria in me causes my body to go through this crazy immune response. It appears when I am on ABX, I live in a Herx.
He said that I could stay off ABX but that his strong feeling is that I would go downhill after a short while. However, I am feeling good off of ABX right now and I really am not wanting to start over.
Any suggestions? He suggested pulsing the meds but told me to "go with my spirit" in how to do that. He said my body would tell me.
I want to continue feeling well. Though, I know, right now, prednisone is helping.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Lily--
What germs do you have?? How long have you been sick??
What ABX and amount are you taking??
Pulsing abx can be OK but Not Babs meds- Babs has to treated Contentiously for best results-
I am not fimular with Prednisone so I cant comment on it -
It is Important to be symptome FREE for several months before stopping ABX-
Stop to soon and relaps will happen -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I am not a doctor. But from what you have shared... my suggestion is to pulse or use lower doses... and after a good while try to build up some.
If inflammation is kicking you so badly you need to stop meds... you may be going too hard and too fast.
What germs do you have?? How long have you been sick??
What ABX and amount are you taking??
Pulsing abx can be OK but Not Babs meds- Babs has to treated Contentiously for best results-
I am not fimular with Prednisone so I cant comment on it -
It is Important to be symptome FREE for several months before stopping ABX-
Stop to soon and relaps will happen -Jay-
I relapsed at the end of March. I am positive for Lyme/suspected for Babesia. I started Amox. with a bad Herx (hospital). Lowered the dose and added in Flagyl. Symptoms continued to be worse and intense.
LLMD moved onto Clindy/Qualquinine but Herx issues (bad) remained.
Blood work came up very concerning so he took me off all ABX.
Put me on Prednisone for crazy inflamation and we will start over with Tetracycline in about a week.
I know I am not symptom free yet since it is only the prednisone keeping the inflamation down. It's just nice to "feel" symptom free.
posted
Yes, Lymetoo, I just started up again on ABX. I was on them and symptom free until January 1. I relapsed March 31st. We started right away.
I know I am not ready to be off of ABX permanently, yet. However, he took me off of them because my bloodwork was "quite concerning". I'll be back on soon.
He said the inflamation was an immediate concern, even more than the Lyme. Hence, the prednisone.
Now, however, I am getting nervous to go back on the ABX because he said basically the last 2 months were like an unending Herx. It was beyond aweful. I was sicker than sick.
Now, of ABX and on prednisone...I feel good...great, even!
He suggested that I may continue to feel this way even on the ABX now that the inflamation is gone.
Or, the inflamation and everything else may just come right back.
It scares me. In my heart I know I need to continue. My body, however, is enjoying the break.
Does pulsing and/or lower doses really fight this as well?
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
First, I am glad you are feeling some relief. I hope the plan is to TAPER OFF the steroids (prednisone) and not stop cold turkey. Maybe adding some strong anti-inflammatory herbs would help (see my last line here). It would be great if that would be enough.
Still, I am very concerned and hope your doctor has a better plan then to tell you to listen to your heart. To tell a patient that they will know in their heart what course to take is the doctor jumping ship.
We don't have the information needed to make such a decision from our heart without sheer hope and desire putting on rose colored glasses.
* We must know the behavior and patterns of the bacteria/viruses that we want to sweep out or negate. I know you said positive for lyme and babesia.
* There are variations between large load of abx that trigger herx and nothing. Herx is very hard and I, personally, think it's highly over-rated as a gauge to a successful outcome.
Going slower (but still scientifically), combining, rotating . . . being sure you have the needed addrenal and liver support, etc.
* You may feel great because you are still on steroids. Injured football players can play and feel great when on steroids, too. Be very careful when making decisions based upon how you feel on steroids.
And be VERY careful not to overexert yourself right now because your brain may be getting false information.
I know it feels great to be on steroids and having the inflammation calmed down is wonderful. It may stay that way, and maybe "in your heart" you can tell if all the infection is gone. that would be great, but give your heart some support in making this decision.
Did your doctor take into account Dr. B's guidelines for how to used steroids? (He advises only with abx.) Yes, after the steroids (without abx), you might get all symptoms back. But, there may be ways to prevent that. (Books cited below.)
If that happens, you may not be able to treat the same way as before, though, as the bacteria could have changed from the steroids and you might need a new plan regarding other abx. You can ask about that.
This all can be an overwhelming and I do not mean to be negative. But you have to have your plan in place so that if that does happen you can immediately treat the cause - with babesia, a tetracycline would not be enough.
You may have many factors that we can't know. Abx don't work for everyone at every stage, but when you ask your heart to decide, tell your doctor you need more information.
And, we don't know - maybe you have all that. So, it's hard for us to say. We can offer bits and pieces of caution and hope.
I apologize for so many words here - I have trouble being concise.
I hope you have the various books regarding alternative approaches. That may be enough. or . . . know that the Marshall Protocol and The Road Back Foundation have low-dose approaches (they are the same on one way; very different in others).
Maybe those from your local support group can offer names of other doctors should you want to find one with an more encompassing treatment plan (and that need not be a harsh plan).
Also, there are some supplements that are anti-inflammatory in nature: turmeric (curcumin), boswellia, ginger, certain Omega oils, etc.
Best of luck.
======================================
You can read many reviews and look over these books at Amazon.
Just two of many:
Healing Lyme: Natural Healing And Prevention of Lyme Borreliosis And Its Coinfections by Stephen Harrod Buhner (Paperback - Jun 25, 2005)
-----------------------
The Lyme Disease Solution by Kenneth B. Singleton and James A. Duke (Paperback - Feb 1, 2008)
=
[ 12. June 2008, 12:59 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
A review of complementary and alternative approaches to immunomodulation.
Clarke JO, Mullin GE.
Division of Gastroenterology, The Johns Hopkins University School of Medicine, Baltimore, MD 21287, USA.
Current Western therapies for inflammatory diseases are suboptimal; increasingly, patients are turning to complementary and alternative medicine for symptom relief and improved quality of life.
There is emerging evidence that many of these therapies have the ability to modulate the immune system and disrupt the proinflammatory cascade through a variety of mechanisms, including antioxidant effects, alterations in cell signaling (in particular the nuclear factor (NF)-kappaB pathway), cytokines, proinflammatory mediators, and disruption of bacterial flora.
Using inflammatory bowel disease (IBD) as a model of inflammation, we explore the principal complementary and alternative medicine treatments that show promise in this regard, namely, resveratrol, green tea, curcumin, boswellia, fish oil, vitamin D, and probiotics.
With each agent, we detail the mechanisms that have been described with regard to immune modulation, discuss the medical conditions for which it has been evaluated, and explore the data to date for the prevention or treatment of IBD.
PMID: 18203964
- It would be great to get the full report. - Better yet to work with a doctor who knows all about this.
Yes, my LLMD had me start to taper the steroids on day 3. I was to be on them only two weeks...not long enough for my body to depend on them.
Yes, I do need to support my immune system better. I think I should pick up that book. Thanks.
Yes, the LLMD will be continuing to combine ABX and to alternate them.
No, I did not stay on the ABX while on steroids. I was having some major blood issues so he took me off for a few weeks to get some more results. The inflamation, however, was at a dangerous level so we did the steroids. I was surprised but he was unequivical in the need to do it.
The "go with your spirit" thing just dis not set well with me. I am given the ABX to take. I am given the amount to take. However, these amounts have not been working as I am in a state of constant Herx on ABX. I know he wanted me to feel free to use less and to pulse. However, I am so uncomfortable with choosing the amount. How much should I let it hurt before I decrease? Is there an amount that is just a waste of my time if I go under it? So, many unanswered questions.
I knwo steroids are masking everyhting right now (for another week). However, I do feel quite well on them and off of the ABX. It makes me want to stay off ABX. I know the good would be short lived, however.
posted
When my husband first became sick about two and a half years ago, he was practically bedridden with fever, aches, pains, pneumonia, etc. His pulmonologist ran a few labs, decided there was no active infection and put him on 40 mg of prednisone.
This man who had spent all of his time plastered to the couch, got up, showered and went to work, then came home and strung Christmas lights. Hallelujah, he was cured!
Well, we enjoyed the honeymoon phase with that drug. After he'd been on it for three months he developed full blown pneumonia due to its immune suppressing effect.
To this day, he's still trying to get off the drug because any time he has a big flare the doctors say he has to have to increase his dosage as his own adrenals don't know how to work anymore.
I understand your doctor is using it as a temporary measure and that's how steroids should be used. Just watch out you don't get caught into the longterm trap like my husband.
Yes, steroids can make you feel great but they often come with a hefty price (my husband has osteopenia and cataracts so far due to prednisone) and also they're not really addressing your real problem.
I hope you can find a way to treat without herxing so hard whether pulsing your antibiotics or trying a different combination or doing herbs.
Posts: 984 | From San Diego | Registered: Nov 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Lily,
while you are feeling good, it might be nice to do some visualization with that. Really feel it, take it in and remember what this feels like. Maybe your brain and body will say "oh . . . so THAT's what you want, okay ! . . ."
Don't fret, I think this will work out being a short time. I wonder if something like Olive Leaf Extract would work until you settle on a plan. It is antibacterial, antiviral and antifungal.
PubMed has many abstracts on it. It is my stop-gap measure and my main medicine (as I can't do abx). I've been off of it for months, now, though, and really know I do better when taking it.
Good luck. Take care and be kind you yourself. This is alot to go through.
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Lily,
Just my two cents, but steroids should only be a temporary measure at best. My girlfriend has lupus, fibro, and R/A. (personally, I think it is Lyme) When she is on steroids it amazes me at how much she can do, much more than I. When she's off them, she's a vegetable and deteriorates rapidly.
I think you need to get the crux of the matter, and finding an abx you feel better on is the key. I've gone through several. Doxycycline makes me feel the best, but burning skin from the sun is an unpleasant side effect. I've been on Ceftin the past week, but slowly feel myself slipping. I snuck in doxy this afternoon. We're having a party tomorrow, and I have to make the scene.
The Clindamycin and quinine protocol you were on is rough on the body. I hear that's an outdated protocol with no lasting effects. Dr. C needs to update that one. He did give me some plaquenil and malerone. Maybe, that would be better for you.
I do think he's right about most other things. He just needs to update some things. I was doing the Cowden protocol at the same time, although he hadn't heard of it. Those Nutramedix tinctures didn't quite deliver as promised for me either. I'm a tough one to crack.
It's so funny, but there isn't one formula for all. Everyone's body reacts differently. It's all trial in error.
In short, go back on the abx, but find one that is tolerable for YOU.
Hugs, CherylSue
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