posted
Seeing the aggressive Dr. H in NY. At Monday's appointment, he switched my meds....kept plaquenil, zith, nystatin and IV Rocephin, that I've been on for about seven weeks. He eliminated bactrim and mepron and replaced them with minocin and tindamax. Well, prior to Monday, I was functioning anywhere between 50-65%...now, since Tuesday, I've been couch bound and unable to work....functioning at probably 25%! I feel AWFUL!
Dr. H thinks it's a herx and to push through! I am inclined to agree, but I've been on this combo before, minus the rocephin, with no reaction! I've never herxed on anything in three years of intensive treatment!
Could this be a first herx....having been on these same meds before....with no reaction....and after three years of treatment?
Thanks in advance!
~tri
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry you are feeling so bad. I think it is possible you are herxing.
You said when you were on these meds before you were not on Rocephin. Maybe it is the combination of all of them that is hitting it?
Posts: 4682 | Registered: Oct 2000
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posted
Yes...high dose...1500 mg daily tindamax....but I only got to that today....did 1000 daily since Tuesday.
I've done cystbusters....flagyl and tindamax....before with no ill effects/herx....but not with the other meds/this same combination of meds.
Symptoms that worsened....heart palpitations, general ill feeling, neuro stuff worse.
New symptoms that appeared...joint pain, nausea,
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Just be careful of overdoing the flagyl/tindamax.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I hope that you are keeping in close touch with Dr. H on your response to this combo. It is so hard to know whether you are herxing or if it is a side effect of all those meds taken together. I would ramp up slower if it has knocked you down to this degree.
Just curious, how are Dr. H and his staff about communicating with you in between appointments on things like this? I hope things get better for you. It is no fun to be where you are now.
Posts: 2387 | From New England | Registered: Aug 2011
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posted
Yes...I emailed them on Friday...he responded back saying that he thought it was a herx and to try to keep going with it and up my detox as well. He said if I was unable to continue, to hold the tindamax.
And they are usually very good at getting back to me...I usually email but I've occasionally called as well...I'm pleased with them so far, just wish I was better. And, quite honestly, getting to 65% some days was nice, but now VERY discouraging being at 25% again! Ugh! This disease just SUCKS!!!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Minocin crosses the blood brain barrier. It can hit people hard.
Hope this passes soon for you!
Posts: 1846 | From Maine | Registered: Jun 2004
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But....do you think that three years into treatment, and having been on this same combo previously minus the Rocephin, that it could still be a first herx? I'm inclined to think so, but just curious what others think!!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
The minocin is only low dose....50 mg twice daily....
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Yes, I think it can. Combos and blood levels are crazy important in this disease.
Mino is one of my best abx. Blows Doxy out of the water.
I've never been on Rocephin.
Stay in touch with Dr. H. If this is herxing, there are better days ahead!!
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
How much Mepron have you taken?
I finally replaced Mepron/Malarone with Alinia/GSE/Sida Acuta and I am Babs' herxing like I haven't in years. I've suspected Atovaquone resistance for some time.
Flagyl and Tini still work for me, but Alinia is even better.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Sammi
Frequent Contributor (1K+ posts)
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posted
Maybe you should let up on the meds for a couple days and start them again. You may need a break.
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lululymemom
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Member # 26405
posted
I agree.. Sometimes you can tolerate a med like tindamax at one time and not the next.. Judging by my daughters reaction its a hard drug to take..
As long as you stay on this level of meds, the herx can go on and on. So it's your choice as to HOW LONG.
(it could let up in a few days, but you never know)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
triathelete, I'm glad that you have some good communication going on with your very reputable LLMD! I would hold the tindemax as he suggests and try to get at a more tolerable place. It is just an awful disease to have to fight. Lyme truly does suck!
I would not be surprised if this is a big herx as a result of being on the IV Rocephin while taking everything else at the same time. You probably are loaded with die-off.
Below are some good detoxers that might help you to feel better.
Hot bath in epsom salts Something that makes you sweat, like a sauna or some exercise as tolerated Curcumin Alka Seltzer Gold Lemon water Burbur Broccoli Sprout capsules
Good luck to you!
Posts: 2387 | From New England | Registered: Aug 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I will watch your post because I never herxed much either on combos...would just feel BETTER and then slide backwards while still on meds. I think I am the only person that I have seen post on this. My symptoms are also all neuro.
PM me if you want, as I'm changing things up. I think Boxermom is right in that blood .evels are SO important with these diseases, esp if CNS is involved,
Posts: 3528 | From US | Registered: Apr 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
When I started with Dr. H I herxed for an entire month. It was tolerable, but I felt pretty crummy. But once I got over the hump I felt better.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Try over the counter activated charcoal capsules when the herxing gets so bad. Take 2 capsules at least 2 hours away from meds.
Charcoal absorbs toxins.
Those capsules made the difference for me one Christmas party. I was so sick during the day, but took those pills and was able to stay up late at the party.
Posts: 1954 | From Illinois | Registered: Aug 2007
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And, it does seem like it was a herx...my very first one, I think....and a BAD one at that! I started the new med protocol last Tuesday...and just today, I feel like I'm starting to come out of it (HOPEFULLY! ).I'm not back to pre-last Tuesday/my baseline of about 60%, but I'm starting to feel a little better...45%, maybe>
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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).I'm not back to pre-last Tuesday/my baseline of about 60%, but I'm starting to feel a little better...45%, maybe>
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