Many of you know my treatment has been going well and somewhat methodical...i had gotten to the point where i had most of my sypmtoms resolved expect for agitation and sleeplessness.
My LLMD added Azithromax 3 weeks ago to get better penetration...whatever that means? i say that because i am already on a macrolide.
Within 24 hours of taking this med i have been pretty much a mess...in three weeks i've had about 4 good days and the past 4 days have been brutal.The first week i had symptoms i had not had in 11 months...
everything about this suggests herxheimer...but i am now 24 days in with no relief. any thoughts? my LLMD stinks with regards to calls...i am not due to see her until Aug 24th...
while i herxed very early in my treatment it was nothing this hard. i am baffled and a bit scared that something else is going on...of course i could feel great an hour from now and then i will calm down....that happenned for 4 days last week.
so what do you think?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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bettyg
Unregistered
posted
hi dave,
wish i had many words of wisdom & experience; but i don't have sadly.
but i can boot you up to the top for others to read and hopefully have some good MEDICAL advise for you my friend.
posted
I've had similar situations with my treatment.
I'll have good periods, but then my LLMD will start a new treatment and it's like back to square one (or at least back a good ways).
Sometimes, if you cut the dose down and slowly work back up that helps me.
If you just Herx nonstop,even at lower doses, then I say it's not the med for you.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
I couldn't say for sure that it is a Herx, but it very well could be.
This is so similar to what happened to me this spring, first with bactrim and then with plaquenil.
I was just starting to see improvement, then Herxed for a month straight on each.
My LLMD said that I don't call enough when I hit such problems.
The plan now is to try different meds to see if I can find a balance between effective and livable.
Most recently, I did a week course of Factive. I did Herx, but it wasn't constant. I was much happier.
My LLMD is very flexible when it comes to trying different meds. That has been helpful in my case since I do really well with some, and horribly with others.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My doc says a herx shouldn't last more than a few days. If it does he will switch the med. Some meds are just hard for some of us to take.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
It's so disappointing when you start to feel better and then it all comes back. So hard to find that balance between what works and what you can deal with. Hope it gets better soon.
Posts: 236 | From Washington | Registered: Jul 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
So sorry Dave, Ask your doctor about antiparasitic treatment.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Why would antiparasitic treatment help this problem when it started with Zithromax??? I'm lost. I don't see the relation.
Dave, I think you should call your LLMD. This is why I'm scared to start Tini or Flagyl as I've had more functional days than before. I don't want to go back to ground zero. My ID doc doesn't believe in cyst busters. Not sure if I do or not yet.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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"MANAGEMENT: Caution and clinical monitoring are recommended if multiple agents associated with QT interval prolongation are prescribed together. Patients should be advised to seek medical attention if they experience symptoms that could indicate the occurrence of torsades de pointes such as dizziness, palpitations, or syncope."
I can't understand why 2 very similar drugs like this would be used together.
Hope you are doing ok.
Posts: 819 | From East Coast | Registered: Apr 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I agree with Lymetoo. It takes me 2-3 days to get out of a bad herx when I stop a drug, EXCEPT when I mixed Abx, Marnie's 'Magic 5' supplements, and low-dose Salt/C. I put a real hurt on myself. That was scary.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Wow- 24 days must suck. I couldn't tell you from personal experience if it is a Herx,
but my doc says she's had patients herx for three months.
It's usually when they first start treatment, because they don't know what works yet, so it makes sense that if could happen when you witch meds.
Maybe it's killing off all the rest of the Lyme in one fell swoop...
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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losferwrds
Unregistered
posted
The half life of Azithromax is 68 hours, so you take it for 3 weeks it builds up on it self, you literally get saturated, for normal things like strep you take it for 3 days.
Biaxin/Clarithromycin on the other hand has a half life of about 7 hours, so they are alot different in that respect.
One thing thats odd is Burrascano says Biaxin is more effective in his protocol, when you would think the opposite would be true, I am actually doing the opposite and going off of Zithromax(I've been paying 4 bucks a pill) and onto Biaxin which is covered by insurance.
But the Zith is strong stuff, its gonna build and build and build so even if you stop taking it its gonna take a couple weeks to get outta your system.
With the phone calls sounds like you go to Dr. G
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posted
Thanks for the support gang...i made the call and for a change i did not get the blow off...told the receptionist the story and she called back 15 mins later telling me to stop taking the Zith and call back on Monday. i was tiold it takes 5 days to get out of system.
Yes.. loseferwrds it is Dr. G.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
What symptoms are you experiencing?
Sometimes adverse med reactions can feel a lot like herxes.
I'm also wondering about the two macrolides being used at the same time. Is it possible that she wanted you to discontinue the Biaxin when you started the Azithromycin?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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going through increased agitation, major head pressure, eye twitching, rubber legs/weakness.....the weakness is like the hypoglcemic(sp) stuff i had going on before treatment.
the weakness has been the worst because excercise has been a big coping method for me...3 weeks ago i could run 3 miles now i can barely run again. not complianing(although i wanted to run a 5k next week) ..just stating the facts.
My Dr. did intend for me to be on both macrolides.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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posted
Just saying thanks to everyone....i underestimated my LLMD. We stopped the Zith for 4 days and we spoke today and agreed it was a major herx and what we ultimately wanted.
we are going to slowly ramp back up...she did not help over the phone in the past so this was good to see...still recovering from the worst herx in my 11 month journey...
just need to get stabilized and then i'll get the running shoes back on.
Thanks again,
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Dave,
The reason I mentioned antiparasitics is because the 2 symptoms you have left, agitation and insomnia can be linked to parasites/worms. If you have never treated for these you might want to look into it.
Hope you feel better,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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i have to ask...and i'm not discounting what you said but why is the answer always parasites? no matter what post i see you always seem to bring it back to parasites?
why the strong conviction?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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lymeparfait
Unregistered
posted
I agree wit Gael,
Check it out!!! Parasites do not test positive initially! They are usually always there with lyme and co!
Also...sounds like candida/mold, metals along with other detox issues.
I have experienced this!
I am lyme free! But still now have these remaining issues (which I too did not even consider having, as I tested negetive to them initially) and am feeling fantastic now, with the proper treatment for these issues!
Doesn't hurt to at least try a natural, non toxic, parasite cleanse...and see what you see! Most are microscopic...but for most of us lymies , lots are very visable! Seeing is believing for most.
Also, as I started to detox and get to the metals and candida, my brain fog and anxiety left! I cannot tell you how wonderful that feels like. I forgot what it was like to think clearly and not to feel that inner agitation. I attribute this to cleaning out the gut, healing it, and learning about detox protocols.
It all starts and ends in the gut! This is also where your immune system is! We have to heal our gut to get better long term.
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sutherngrl
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Member # 16270
posted
I too have always wondered why the answer is always parasites. My LLMD has never mentioned parasites or worms to me.
Lymeparfait, you say that it starts and ends in the gut. Wouldn't probiotics take care of the gut? Also how do you know you are lyme free? I am not being sarcastic.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I have been sick in bed for 7 years (doing every holistic treatment available). After three years of near death, we discovered a terrible parasite. I saw worms in the toilet. Next, Lyme.... Yes, it is unfortunately (or can be) quite a concoction of disease. I was relieved of several symptoms after parasite treatment. Now, on to Lyme...... just started in April.
Have you been out of the country? Where have you lived? Parasite blood tests are annoying as well. Can be negative when really positive. Can also get false positive. Worth it though to do detoxes and check blood (doctor).
Posts: 68 | From chicago, illinois | Registered: Jul 2009
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posted
nope not out of the country and perfectly healthy until a tick bite in 2006...up to now been making good progress...never any digestive issues before or during treatment...
i think its lyme....but a month of humaworm is all we are talking about to prove or disprove...correct?
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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