posted
I was herxing in a bad way (is there any good way?) and my Dr. said to go off the azithromycin 500 mg. for 3 days.
I took the abx starting at 1/4 then 1/2 dose in Dec. 05. I started the full dose Jan. 8, 2006, so have been at the full dose almost 7 weeks.
This week, on Feb. 21 I had a massage. The next day woke up feeling not so good. I did dry brushing, then felt even worse.
Had an increase in all symptoms (fatigue, brain fog, muscle weakness), could barely manage. Then, I became very depressed, the kind you can't shake off. I was crying, it felt very dark there, and I was very scared.
Then, later in the afternoon, it rolled away like a wave. I called my doctor's office and was told to stop the abx for several days.
The next day, yesterday, felt better, still weak. No mental health alerts needed.
Today, did a detox bath in the a.m., felt very weak, just could not handle doing anything, called a friend to help me with a few things, and asked my son to cook for me. Later, felt a bit better.
So, what I want to know is, how long can I stay off of the ABX? Today is day 3. What is happening while I'm off the ABX? I must have a lot of toxins that have not yet flushed out. How can I prevent going into a scary depression in the future?
Thanks for your help, I can surely use it.
Posts: 873 | From WA | Registered: Dec 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Zith stays in the body a long time, so you maybe not experiencing the effects of stopping ABX so soon??
It is said to stay in your system up to 7 days!
How long can you stay off ABX? However long YOU want. There is no rule about this. Everyone is different and each LLMD and person has their own expereince and opinion.
Some say you can cause resistant strains, others say Bb grows too slowly for this.
Babs has been documented to become resistant when not treated properly.
What is happening while you are off ABX? well, the olympics are almost over, and it is really warm and sunny in California....LOL!
Just kidding...
I dont know the answer to that.
How to prevent scary depression? That is a really tough one. I get scary depressed and suicidal and all that when I herx. And then I feel like a totally different person when I am done herxing. Maybe I AM
It is hard to avoid the depression. You could take meds for this. I choose not to. I understand that I feel this way b/c of physical stuff and my circumstances. I just try to remember this when it is happening and remember that it will pass. I have had no luck with antidepressants in the past. Others here have.
Come to the board when you are depressed...we can usually provide some company.
Also be careful of detoxing too much. You need to balance things. You might be losing some really important minerals when you detox too much/fast.
Glad you are feeling better.
By the way...I BREAK for ABX.
Meaning, I have and will continue to break treatment when I feel like CRAP.
I also have had years of no treatment and no symptoms either. go figure Posts: 1950 | From New Mexico | Registered: Sep 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
You can herx many many days when you go off for three days. If you took your last zith,it can stay in your system a long time. Then day 1-3 you iniciate a herx and can still be herxing all week.
This has happened to me many times.
BB takes a long time to replicate so not to fear.
take care and hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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When I was on Zithromax, I pulsed it since it stays in your system for so long. I would use it for 2 weeks and then take 5 days off.
When I would start back up again, it wasn't as bad as the time before. I think pulsing helps your system to rest and get a much needed break from the abx.
I experienced the depression too. That's why I needed the breaks to feel sane again and be able to function.
Wow, you know I often wonder if massage would send me into a spiral too. I have been too afraid to get one since treatment began (Jan 1 06).
I am currently breaking from my abx...now on 10th day of 14. This is my llmds regular schedule. I was also terrified of breaks, but have since learned that the esteemed Jemsek Lyme Clinic in VA does four week breaks between treatment.
quote from clinic.... "Obviously, our ultimate goal is Bb eradication, if possible, or at least a state of competent immune surveillance resulting in lasting relief from disease. As treatment progresses, return of symptoms off therapy becomes more delayed and symptoms tend to be milder.
On the occurrence of relapse in our cycle, the patient is given the option of resuming therapy at the first sign of relapse or they may simply wait until the four-week period is over.
Interestingly, during that first week or two on drug holiday, our patients invariably remark that they feel the best they have since becoming ill. Obviously, when a patient ceases to relapse on holiday, it is taken as a positive indication.
It is even more encouraging at that point if the patient fails to exhibit any sign of Herxheimer's reaction during the ensuing treatment cycle, suggesting that Bb die-off is clinically non-detectable.
In general, we have informed patients that therapy may extend for two or three years before they may reach an asymptomatic state."
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Hopeful, there was a period where my massage/body work would make me feel really bad the day after. When you have body work it stirs up the toxins and they get moved around.
This is a good thing. Did you drink a gallon or more of water for hours after the massage? Water helps flush the toxins out of the body.
Also be sure your massagist is doing light work on you. If your massagist does lymph drainage work that is the most beneficial.
Two years ago I started having body work every week. I did this for about 6 months. She mostly did the lymph drainage, but I also would tell her which treatment I wanted that week based on how I was feeling. If I was feeling toxic all over, I would do lymph drainage.
If I was having muscle pain, she would do light massages. Another thing I learned is I couldn't let her touch my head or neck. This would stir up the cranial stuff and it would cause me to have more brain fog. Your depression after could be result of her doing work on your head???
I haven't let her touch my head for the last 6 months. The last year I'm only going once a month because I feel that's all I need.
But I remember how bad it could be in the early months. It's best to work with a massagist's that has alot of experience with the chronically ill. They should treat you like they would a patient labeled with lupus, chronic fatigue or fibromyalgia.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Wow. Thank you all for your very helpful posts.
Trails, thank you for adding a little humor to my day.
So the abx can stay in your system for awhile. You say that each LLMD has a different opinion, and patients are individual. One size does not fit all. Hmmmm.
I do wonder about the resistance being built up to the Bb. That is a scary thought. Do you know of any articles on this?
I'm not too big on trying anti-depressants. I do have a RX for Lexapro, but, I'm taking so many meds, I'm handling all I can.
The dark thoughts at the bottom of the pit are totally not me, and very frightening. I don't think I can handle going there. I did talk to myself, but what if a time comes when that isn't enough? Thank G-d, the whole episode washed away.
How do you find the balance between not detoxing enough, and detoxing too much? This whole lyme tx process sounds like an experiment.
I may need to subscribe to your lead when you say:
"I have and will continue to break treatment when I feel like CRAP."
That makes sense!! The treatment is definitely some strong stuff to go through...and this statement from a cancer survivor!!
Thanks for all your help. Take care. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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You say: "BB takes a long time to replicate so not to fear." You touch on an important part of this whole treatment thing...FEAR. Yet, must stop for a time, if feeling unbelievably dark and scared; certainly can't go on like that!
Thank you for your support. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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You say: "When I was on Zithromax, I pulsed it since it stays in your system for so long. I would use it for 2 weeks and then take 5 days off."
This sounds very helpful. Is this what your doctor suggested, or did you learn of it elsewhere? So, there's no concern for developing resistant Bb with this process?
"When I would start back up again, it wasn't as bad as the time before. I think pulsing helps your system to rest and get a much needed break from the abx."
Did you go back on at your full dose, or build it back up?
"I experienced the depression too. That's why I needed the breaks to feel sane again and be able to function."
Yes, staying sane and being able to function, I'd say these are a priority!
Are you still being treated at FFC, or have you gone to an LLMD?
Thanks for your comments and support. Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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Thank you for this info. I'm going to go to the website and print it out. It helps to understand how this pulsing works, but it seems like different doctors do it differently, so kind of confusing, too.
Take care, Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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"Hopeful, there was a period where my massage/body work would make me feel really bad the day after. When you have body work it stirs up the toxins and they get moved around."
Yes, I'm sure that's what happened. I did not drink that much water at all, but did drink.
"Also be sure your massagist is doing light work on you. If your massagist does lymph drainage work that is the most beneficial."
Yes, I've been seeing her for 2 years, and she does do a light massage. I am thinking now of asking about lymph massage too.
"Another thing I learned is I couldn't let her touch my head or neck. This would stir up the cranial stuff and it would cause me to have more brain fog. Your depression after could be result of her doing work on your head???"
Oh, I hadn't thought of that! Yes, she worked on my neck, and jaw area for TMJ. Also did Reiki, including the head area. Could Reiki do that?
"It's best to work with a massagist's that has alot of experience with the chronically ill. They should treat you like they would a patient labeled with lupus, chronic fatigue or fibromyalgia."
She does have experience with this, and pre-lyme dx and tx, I had the CFIDS/FM dx, and cancer. So she is very sensitive. Thanks for mentioning this.
Thanks for all of your help, take care, Hopeful4
Posts: 873 | From WA | Registered: Dec 2005
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
This is a good thread on zith. I can relate to the herxing on this ABX.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Anyone read my post about head aches and ear pain on Zithro? It should still be on the first and second pages under the medical forum. I am new to this all and was just diag. with Bart. (ran through Frye labs but wondering if I should of had the more complete one). Anyway I had a lot of ear pressure and pain along with the head aches and only have been on it a little over a week (250mg x2). So yesterday I only took one and I think I will give it a break for a few more days before resuming to see if it helps with the pain. Other posters have warned me about hearing loss from Zithro, so I will call my LLMD Monday. Just thought this may help and suggestions to this appreciated too. Stacyb
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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posted
I was glad to read this topic. I started mepron and zith the same day due to an infection. I had nightmares (which I never have) and some depression (I teased my 15 year old when I let her drive - that I wasn't valuing my life that day). I thought it was the mepron, but couldn't find any info on that and depression. Now I see it was probably the zith.
-------------------- "His faithful love endures forever." Psalm 136 Posts: 189 | From MN | Registered: Dec 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Just read trails reply. Good info.
I break for abx sounds like a new bumper sticker.
I, too am on a abx holiday due to being out of abx and waiting for telephone consult with lyme doc.
What you described is what i have been going through for quite some time.
It does become less with treatment.
That dark scary place is the worse.
I went through that while I was waiting for a dx...18 months and 35 doctor's later....
and after dx and treatment started.
the hill is steep for me and the journey is slow
but i do believe there is recovery at the end of the journey
coming to this board has been a key during those dark times
something seems to change in the brain
i just wait it out
still looking for someone in my new town to be there for me during those times
I find some people make it worse instead of better
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
hopefull I too feel terrible the day after a massage, this will get better with each massage I was doing therapy every 2 weeks when I started now down to once a month. If you have the lymph massage done you may have a reaction as I did I got a rash under both arm pits that my regular doctor said was a yeast and had to get an anti fungal script to make it go away but the massage does wonders especially the sinuses what a difference it made, for most of my adult life I have never had both nostrils open at the same time but have been breathing much better for 6 months now. Drink lots of water the day of your massage and more the day after as it will flush out all the junk the massage helped loosten up. As for pulsing my doctor says in his notes he passes out to all his paitients lyme grows very slowly in a petrie dish over several weeks so you should not lose ground and slow and steady wins the race quote be the turtle not the rabbit and you will feel much better and the herx's wont be as bad.Dont try and be a hero as you could make yourself worse by staying on the abx and not giving yourself time to heal
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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