Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Hi everyone,
I read some posts about a lymenet member passing away recently, at the time he was on IV Rocephin. He was called ALS/Lyme. What an incredibly sad thing.
Does anyone know if he died from a herx while on the Rocephin?
I recently heard from my LLMD that a young woman died in a hospital near me while on IV Rocephin, she was into her 9th day on it. He felt it was not a reaction to the Rocephin, I asked if she may have died from a herx, he said possibly. He was not her Dr, she was too sick to travel
to a LLMD, so went with the ID Dr.
I am headed for the IV, but think I am not ready to do this, as may die from a herx, so am going to do the orals for awhile longer I think, to be safe, I can always do the IV if I get worse, or dont get beter.
thanks,
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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LostCityAgent
Unregistered
posted
Hello, Your post screams fear and absolutely it is rightful. I am sorry that no one has been able to respond to your post. I am not an MD and cannot specifically give you an answer and quite frankly I am not sure that they can either. If you have the cardiological or amyotrophic lateral sclerosis presentation of LD I would say that you should back off on treatment while having a herxeimer. Many on here may disagree, but quite frankly, they are not physicians either. Each person is specific and different. We respond to medications differently. It is too easy to say, "keep going." The rate of damage must be weighed. Do you have ALS?
years ago, i've read of at least one death in a cardiology journal abstract; and heard of one in a phone conversaton by a fellow lymie. best i recall, over the years, i've heard or read of at least 5 deaths---from the herx, alone.
i was on rocephin X 2gm., and almost had a stroke on teh third day. it was withdrawn then, or on the fourth day.
one question i have is that, other than a steriod, which may be needed, at least in low dose, and while an antibiotic, whats the next best thing to take, say prior to starting it.
We remember you, and we are all inspired by your courage. You took the time to help others when you were in the foxhole, and God has awarded you a place of honor my friend.
I pray that those of us who are left to continue the fight will end this war. There have been far too many causualities.
Posts: 559 | From Cary, NC | Registered: May 2006
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posted
Lymescience, that was a very moving tribute to ALSlyme. He was a great guy from what I could tell from cyberspace chats.
He will truly be missed.
Health...Did you find the thread posted by Tincup when ALS passed away? I think it was in Medical. I can't remember if any details were offered there on how he died.
============================
Those those on ANY antibiotics:
Slow and Steady wins the race! If your herx is too severe...BACK OFF!!! Just my very humble opinion!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
He was such a fighter! I too reread his posts and got so sad. He changed his name from ALSLYME to something else in July 2005. Does anyone know what his new name was? He said ALS standed for "all lyme symptoms". Betsy
Posts: 107 | From VA | Registered: Mar 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Health..
I miss Billy (ALS/LYME) too... very much so. My heart is still crying... and still breaking... every day.
Yes.. people DO die from herxing. It is very possible. We MUST be careful. If we are in pain or having problems.. we MUST back off the meds and tell our doctors immediately. If the doctor doesn't listen... stop the meds and find a new doctor.
From what I understand.. Billy did not have complications from an IV... nor was he herxing at the time of his death.
So please don't reject treatment, because of fear.
Keep in mind I am the world's BIGGEST sissy baby... so I say that from experience. And I am pretty sure anyone who has been around me when I had to do IV's would certainly agree I was FREAKED totally the entire time... and sick as a dog. I REALLY don't like taking meds.. especially IV's. But they stopped the progression of the disease and got me out of bed and functioning... and they were the only thing that did.
Back in the "olden days"... they didn't know what herxing was... and NO ONE told me I would get worse... or could explain what was happening to me.
AND.. they insisted I was faking and I couldn't be worse cause I was being treated and should be better. I darn near died several times... and was in septic shock on one ER trip. They still never told me anything about herxing.. and I know now they didn't know. It was VERY scarey!
Even today I actually must talk myself into taking antibiotics when I do take them.. even the orals. After no treatment for years I was told once to go on oral zithromax.. and was so upset that I had to take antibiotics again that I actually walked out of the doctors office.. slammed the door and told him NO.. and to leave me alone!
And he was a GOOD guy!
He called me at home later.. knowing fear was the problem.. and told me to spend the day "hanging out" in his office when I took my first doses.. so if I had a bad reaction he could help me. I was alone at the time and had no one around to help if I'd had a problem.
Anyhow..
If the ducks could see me.. spend a week with me before I knew I had to go back on IV's... they certainly would learn that we all don't have a mental disease they once dubbed.. "antibiotic seeking behavior". If anything.. they would see I have a disease called RUN FROM THE IV's!
I would NEVER take antibiotics or any meds.. then or now.. if I could live without them. I am.. to this day.. still horrified to swallow that first pill when I must go back on treatment.
But.. I am getting better a tiny bit.. because I know NOW that I know when to say when... or to stop them.
So do know you are not unusual. Your fear is normal. Just don't let it get the better of you. OK?
posted
TINCUP....you are funny. Thank you for sharing your fears about antibiotics. I have become exactly the same way, and honestly was starting to think I was going "mental". I am now TERRIFIED of any antibiotics....which is not such a good thing when you have chronic lyme. It's just that when you have so many bad reactions and allergic reations (which are truly terrifying), just the thought of putting one in your mouth can cause a panic attack. I always say to my husband "Well, here goes....hope I make it"...with each new pill.
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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posted
I have not posted here for a while, but after reading this post, thought I would.
Some of you probably remember me posting a few months back, I was concerned about MS/LYME.
My grandmother was diagnosed with MS at age 60. She passed away August 31, 2003. She died from cardiac arrest after receiving a double by-pass 5 days prior.
She came through the operation with flying colors.
The cardio told us before the surgery that her heart was enlarged, and only the bottom portion was working.
Mind you, my gram never had high blood pressure or high cholesterol.
After looking into all these things with the problems that I have been having, I wonder if my gram didn't have Lyme instead of MS.
It is not that often that someone her age is diagnosed with MS, it can happen but not that often.
After she passed away, I found a journal that she kept, it documented all her symptoms that she had experienced in the 19 years of having it.
She wrote, "Dr. ?" said that in people my age, this is called "disease of demyelination", What?
Could it have been possible that she had Lyme induced MS?
She was on high doses of antibiotics after her surgery, could she have had a "Herx"?
I know this sounds far fetched, but I don't think that she had MS.
She complained mostly of lhermittes, blurred vision, and towards the end, bowel problems.
She was never confined to a wheelchair, she did have leg pain, but refused to use a cane or walker.
I guess I just had to vent, I wish she was still here with me, I would definently run her but to the nearest LLMD.
Sorry for the long post, I had been thinking this for a long time, and I do think people could die from a Herx, especially with having a heart problem.
So long and take care!!! Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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LostCityAgent
Unregistered
posted
I recommend LDN for you. My LLMD says it would not hurt, especially if you think that you are ALS bound.
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