I'm still working out the kinks -- going on 10 months of ABX treatment. I search every now and again about the remainder of my symptoms and still looking for answers.
One of the main problems I still haven't made any progress with seem thyroid related (e.g. cold hands and feet, cold intolerance, hair loss around head and eyebrows, skin dryness and blemishes)
I met with my LLMD last week and decided to try a trial of Armour 15mg daily. Although I actually felt warmer on Armour, it made me feel sicker. I had shakiness, anxiety, fatigue and concentration issues. I was on it for 3 days before I decided to stop.
My LLMD said, "your thyroid tests all look good." TSH is normal, T3, T4 and reverse T3 all good. He mentioned that it's still possible there's a problem in that area, but it might not be the thyroid...but the thyroid receptors instead; like bad wiring to a fresh thyroid gland.
After my trial of Armour I had to agree, because I felt like symptoms of HYPERthyroidism were kicking in.
I've had problems with anything that seems related to hair loss and skin care. I tried RegeneMAX and it made me very nauseous and trouble focusing -- just like with Armour.
I can't figure it out. But, I started thinking about how wonderful Prednisone was for me. I actually felt like a million dollars on Prednisone and within just a few days my hair starts growing back, my skin looks healthier, and all my pains and breathing issues were gone.
Only problem is within a couple weeks of being off it, all the problems come back 10x fold. Again, my LLMD says that Prednisone stops the infection and the immune system from fighting so I don't feel bad. But, with the immune system taken offline, the infection is multiplying and getting stronger -- all the while I feel great!
Well, if none of the antibiotics I'm taking are helping with the hair loss and skin problems, what infection am I dealing with the Prednisone stops it all?
Is it Lyme? Is it Babesia?
I'm positive for both and Bartonella.
Do you have any thoughts or related experiences to share?
The only thing that brings me comfort is knowing that typical eyebrow hair loss and related hair loss usually grows back, and I've seen it with my own eyes on Prednisone. I just don't know how or what to supplement to get this thing rolling.
Or what the hell is wrong with the thyroid receptors and how to correct it.
Posted by Keebler (Member # 12673) on :
- Q: "what the hell is wrong ?"
I'd say the prednisone is what's wrong.
quote: "Only problem is within a couple weeks of being off [predisone], all the problems come back 10x fold. " (end quote)
Steroids do that. They MASK symptoms, big time.
You said "Again, my LLMD says that Prednisone stops the infection . . . " (end quote)
That is just not possible. Prednisone/steroids do not stop infection. They can minimize inflammation (and that often offers relief and can make us feel fantastic, temporarily) but they do not stop infections. Infections can rage in the presence of steroids.
Are you sure your LLMD is ILADS-educated? Lyme patients are instructed to avoid steroids unless in a vision or life-threatening emergency.
An exception would be for very low dose hydrocortisone / Cortef, for those who are not helped enough with adrenal adaptogens for adrenal support. But the adaptogen supplements should always be tried first. -
Posted by Keebler (Member # 12673) on :
Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses
16th edition, Copyright October, 2008
Joseph J. Burrascano
Excerpts:
P. 4:
. . . 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. . . .
From page 12:
. . . 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 20:
. . . and absolutely no immunosuppressants, even local doses of steroids (intra-articular injections, for example). . . .
. . . "Steroid Disaster" is a term coined by the pioneer of Lyme Treatment . . .
Corticosteroids are immune suppressants, the last thing a Lyme patient needs is to lower immunity.
Can you imagine, your body trying hard to fight off the spirochete bacteria and suddenly and immunosuppressants is introduced, "freezing" your immune system, rendering it unable to battle, giving great advantage now to the Lyme bacteria to spread and go wherever it wants .
Corticosteroids can last in the body for months, usually around 6 months. In many bacterial infections such as LD, damage can be done.
Many Lyme patients (such as myself) triggered LD with cortisone shots, pills, inhalers, etc. I can tell you, it is a nightmare I wouldn't wish on my worst enemy.
It is imperative to NEVER take corticosteroid for pain if you know you have a bacterial infection.
Some bacterial infections are so severe that a shot of cortisone could kill you, although that would be unlikely with Lyme, but rule of thumb, bacterial infections and immunosuppressants do not mix! . . .
Prednisone Side Effects (prednisone is a corticosteroid)
Excerpt:
. . . Corticosteroids may lower your resistance to infections. Any infection you get may be harder to treat. . . .
. . . After stopping this medicine, a body may need time to adjust. The length of time this takes depends on the amount of prednisone taken, and how long it was used. After large doses of this medicine for a long time, it may take up to one year to adjust. . . . -
[ 11-07-2010, 10:59 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- Backing up, you said: "going on 10 months of ABX treatment"
You also said you have lyme, babesia and bartonella. Are all three being treated?
Have you been assessed for Heavy Metals?
Were you able to try any adrenal support supplements?
For some, even just with lyme, it can take 1 - 3 years to get to a decent remission. If you are rushing to steroids thinking that you should be well by now, it's important to know that, for many, it takes years of treatment.
I don't want to bring you down but the reality is that many just don't find success in that first year. I do hope you find some of the puzzle pieces, though, because there are ways to feel better along the way.
TURMERIC / CURCUMIN & MAGNESIUM ?
What are your current doses of these ? I just assume all lyme patients are on these but you may need a dose adjustment. If curcumin is too strong, turmeric is the fall-back one. -
Posted by Wolfed Out (Member # 23727) on :
Hi Keebler,
My LLMD is NOT an advocate of giving steroids. It just so happened that I was given Prednisone before I was disagnosed with Lyme and Co. Each of the 3 times I took it, I noticed immediate relief from so many symptoms, but at that point I was not sick enough to know I had a real problem.
I was given the steroids because of sinus infections and allergies. They were never longer than 10-day courses and no more than 40mg.
He didn't say it stops the infection, he said it stops the infection and immune system from fighting. Maybe I should have worded it as suppresses the immune system from battling the disease. Therefore, he's saying we feel bad because our immune systems are fighting it.
But, all the while, the disease is multiplying and becoming much stronger. So, when you come off steroids, everything gets much much worse. Which is exactly what happened in my case.
But, it still boggles my mind that ALL of my symptoms were gone on Prednisone, and I had a list that strectched 40+ symptoms.
And, really the purpose of bringing it up is because it's the ONLY thing that has brought my hair loss to a halt and gave me new hair. And, I'm trying to find the connection for what Prednisone was doing that nothing else I've taken has done yet.
I'm sorry the steroids brought out the worst in you. It's the case with me as well, and my vision is still damaged after 10 months, and slowly progressing. I'm really hoping the trails will be completely gone by the end of the year.
Posted by hadlyme (Member # 6364) on :
Hi Wolfed... I happen to be on Armour and it doesn't effect me like it did you. Unless I go up in strength, then I feel hyper.
I too have lost a lot of eyebrow hair and the cold feet and all...
And I've been on Armour now for 8 months and I wonder if it's doing anything or not.
I do know that with lyme and co, we will have things totally screwed up and we will have lyme induced hypo, which doesn't always show up in thyroid tests..... AND.... have your adrenal's ck'd. Also, have you DHEA ck'd if possible.
Wish there was a direct answer.. if you find one, let me know! Posted by Paul Mall (Member # 27581) on :
quote:my LLMD says that Prednisone stops the infection and the immune system from fighting
I think you misunderstood your LLMD
prednisone stops the immune system from fighting the infection... which intern allows the infection to spread
Paul
Posted by Wolfed Out (Member # 23727) on :
Hey hadlyme,
I do recall my doctor mentioning my DHEA was low. That's another thing, along with Armour and RegeneMAX that I can't handle well. I took DHEA supplements and they made me feel worse.
What does that say about how I'm accepting these thyroid replacements? I don't know...
Of course, if I find the missing piece to the puzzle I'll let you know. However, I was under the impression that you'd know if you were feeling better from Armour pretty quickly. I've heard of positive results within a week.
I don't think it's supposed to make you feel worse first however.
Posted by Wolfed Out (Member # 23727) on :
Keebler,
Yes, I have Lyme, Babesia and Bartonella.
My treatment has not focused very much on Babesia aside from taking Bactrim DS and Artemisinin. However, my Babesia symptoms have been reduced greatly (e.g. night sweats, rocking feeling, air hunger).
I just started Flagyl and havent had much of a reaction to it. I'm doing really well on the protocol, except for the things I'm complaining about above.
I DO hope it's Babesia related, because I'm starting Mepron or Malarone next.
I think I did a poor job explaining my post. I'm not rushing towards steroids. I'm well aware this is the WORST option for anyone who has Lyme. It will make everything worse in the long run. I was just trying to explain my experience with Prednisone and how it cleared my symptoms.
Effectively, Prednisone seems to be capable of masking the symptoms from every infection I have.
Lastly, I haven't done much for Adrenal support. I tried some things I think Alpha Lipoic Acid. I don't have much trouble with fatigue anymore. Anymore thoughts?
Sorry if my post was misleading.
Posted by Terminator (Member # 27328) on :
"cold hands and feet, cold intolerance" sounds just like me. add heat intolerance to that. not sure what's going on, but armour also isnt really helping me and my thyroid numbers are fine. normally you would think that taking a glucocorticoid, by reducing your immune response, would make you feel colder (if you started with a fever), but for a chronic infection like lyme, with no fever, maybe low adrenal output is what causes low temperatures.
Posted by lymeboy (Member # 24769) on :
dont take any more prednisone. It is an evil drug.
Posted by Terminator (Member # 27328) on :
yeah i would test my cortisol levels (morning, mid day, night). however if you dont have fatigue, it's probably fine. in which case the effect of prednisone would indeed probably be from immune suppression. the only valid reason i know to use prednisone instead of hydrocortisone is for big pharma profit.
if you're looking for abx suggestions for your next 10 months feel free to look at my planhttp://flash.lymenet.org/ubb/ultimatebb.php/topic/1/100368
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