posted
hello my fellow lymies... My 'recent' history:
April - October 2006: first time off the meds. Yaaaay - I am so happy, feeling great. What a great summer.
October 2006: my first relapse. Bummer. Started back on with my favorite combo: Tetracyline plus Flucanazole (Diflucin). This helped me and got me to a pretty stable platform. In April (2007) my LLMD and I decided to go for something new. A combo of Tindamax, Minocycline plus Flucanazole. This is the story....
After taking the combo 7 times (3.1/2 days) I got a bad reaction. Is it a herx, is it an allergic reaction? LLMD says 'it is too early for a herx - get yourself tested for a possible allergy to these meds'. I stop the meds. Next day / two days later I feel great.
Before I got tested, I got strep throat from my wife. Hmm. Two weeks on Penicillin. Then I got tested - no allergies to Tindamax or Minocyclin.
Got back on. After 3 days I got bad reactions again. Allergist says 'it's not allergies - must be side effects'. LLMD says 'it's too early for a herx, must be side effects'. I decide to tough it out. I really want to improve and this combo is the last thing I can do before going IV. Next day the reactions are too bad - have to stop again. I feel like crap. I have a really bad taste in my mouth - so bad that it makes me nauseous. I discover that my tongue has a kind of green film on it. I am thinking yeast? My throat also hurts a bit, I feel hot (no fever) and itchy and have cold chills sometimes. Also somewhat swollen glands. It's like a herx but it can't be a herx. My LLMD says it's not yeast since I have been on Diflucin (strong anti-fungal). My GP says it's side effects from the Tindamax etc. But my LLMD says it's too long after stopping the abx for it to be side effects. Half life of these meds is 12 hours so after 3 days you only have 1/2 power 6 equals 1.5% of the meds left in your body.
Both LLMD and GP agree on giving me 'swish and swallow' with Nystatin. This is an anti-fungal.
My LLMD says it sounds like Lyme symptoms coming back (quite severely) due to the new drugs. It could be that the Tindamax / Minocycline / Diflucin (new combo) has changed the BB's activity and are acting up. He mentioned that it looks like Chronique fatigue Syndrome symptoms. He wants to me to on a low dose of Tetracycline if/when the Nystatin does not improve my situation. Did I mention I have to go to South America for an 8-day business trip tomorrow?
Why am I writing this, what do I want to know? What do I want to achieve? First of all, I just want this off my chest. I am so sick and tired of this whole Lyme crap, it's just too much. I am also sick and tired of complaining about it. I have an awesome wife and 2 great kids and I can't stand that I am not there for them as much as I want to be and once was. It's killing me.
Secondly, I's like to have your comments on the tongue / throat / chills thing. I must say that, save this morning, I am already starting to feel a bit better. Swish and swallow baby.
Thirdly, probably most important, does anybody have the experience of new meds changing the BB (Bloody B@stards)'s behavior, changing your condition from a pretty stable platform to a 'nose dive pretty bad condition'? How is this physically possible, what is the explanation? Did you guys recover? Is it maybe even a blessing in disguise - i.e. we are bringing out the BB's that were hiding and we couldn't get to?
Fourth, experience with the Tindamax / Minocycline (with/without Flucanazole) protocol?
All the best,
Tim
Posts: 147 | From Westborough, MA, USA | Registered: Feb 2004
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Tim,
Sorry to hear about your relapse.
In my opinion and experience, it is entirely possible to start herxing after being on antibiotics only one day!
So, I wonder why your doctor says that it is too early to see a herx after 3 days? That does not seem right to me.
Some of the general medical literature (not lyme specific) says that people will see effects from antibiotics within 48 hours.
When I started taking doxy after years of untreated lyme, I was definitely herxing within the first day -- I felt the effect so incredibly strongly, I have no doubt about it!
Mino and tindamx in combo with diflucan sounds like it could be a pretty effective protocol, which may be why you are herxing after 3 days.
So, in my opinion, it is a herx you are experiencing -- which may be all the more reason to stick with this combination of mino/tindamax/diflucan for a while, because it is working.
Feeling awful may be a result of the toxins released from killing the Bb. There are alot of threads on how to detox -- saunas, chlorella, chitosan, and other binders. Maybe those would help?
Take care and I hope you find the combo that works best for you.
I use the oral nystatin occasionally, it works pretty well.
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I Herx VERY quickly on new meds (except when I was relal ybad and nothing worked) and I decline VERY quickly w/o meds- I htink because I have a great deal of abx mediated inflammation (just my guess!!!). Last week I forgot morning amoxicillin and by 5 pm by knees were red & swollen!!! ON ABX I am 99.9% and can run 8 flights of stairs 3 times in a row!**)!)!*)! But off them I decline quickly- and react quickly, herx quickly, on new ones!!! Babs meds had me herxing within half an hour whenever I started them!!!!!!!!!!!!!!!!! (Visibly too I would have my hands and face flush bright red!)
So for me- never too early for Herx- I agree with Monty*)!*)!)! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
I would agree that it is a herx. Take a look at Dr B's guidelines and herxes start 48 to 72 hours after starting abx. I herx the same way that you describe. Especially after starting mino, I herxed for 6 weeks and finally had to stop the mino to recover.
I would start the mino for a week or two and then try adding the tini. Just a thought.
I hope it gets better for you.
Posts: 188 | From ID | Registered: Jan 2007
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
A number of people here, myself included, have herxed about twenty eight hours after a shot of Bicillin. Right on schedule. And it is SLOW releasing. You can find traces of it after four weeks.
The stuff you are taking is rapid releasing.
I say herx.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
My first question would be what dose of the meds were you taking?
Mino is very powerful. Tindamax can also be hard to tolerate.
In my opinion a person can herx within minutes of taking a new med. Hubby almost always feels worse whenever any med is at peak level in the bloodstream. It is almost like clockwork based on each med. Usually happens with every dose although if he is lucky he eventually has a lesser reaction over time.
These aren't allergies for him. It could be a buildup of toxins from the meds themselves. Who knows? I just know to start him on very low doses -- usually 1/4 normal doses or even less. And he can hardly ever tolerate more than one med at once.
Hope you figure this out.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I developed a bad reaction to Diflucan ; Throat closed up and couldn't breath symptoms got worse. I've taken this for thrush for 5 years without long term success . I guess I developed an Allergy.
Posts: 789 | From CT, | Registered: Jun 2006
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My thoughts here... as others have said mino and tini are tough meds!
I would call them both down right bb, for ball busters! Both meds have flattened me and others I know on more than one occasion.
So, my questions to you... did you start all these meds at once? ....Did you start at full dose, of tired up?
Many individuals have to tirer up with mino dosing to avoid herxing to strongly, and then add tini afterwards.
This may be something to talk to your LLMD abt.
Remember to go slow to go fast and enjoy your kid!
I hope you find the balance soon!
Posts: 663 | From NH USA | Registered: Sep 2004
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I pretty much agree with the others. It certainly sounds like a herx to me. I also get them with new abx, just a day or two after I start.
I also only begin one new med at a time, so if there's a problem I know which one is causing it. That means when I recently switched abx to three new ones it took me a while to do it. I ended up spreading it out over two months.
Some of your "LLMD"'s comments make me wonder how Lyme literate he really is.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
thanks for your input and support guys. My comments (from my hotel room in rainy Sao Paulo, Brazil):
1. I have been off the meds for one week now and am back to feeling well. I took the full dose, no ramping up. Yes, on Bicillin I herxed severely within hours - I think that this might have been a herx as well. Although I have never had a 'continuous' herx. Whenever I herx, it's like you feel bad for a while and then get over it, even when continuing the meds. With this combo it was bad after a few days and then got progressively worse.
The Doc said that it takes a while for the Tindamax to enter the system, that's why he thought it unlikely to be a herx. It might have been a minocycline herx. I will ask about that when I see him.
2. Only thing I have now is a fungus / yeast in my mouth. Very yukky. And yes, the Nystatin is liquid and I suspected that it has sugar since it tastes sweet. How silly. It does not do me any good, actually the situation is spreading...
3. I trust my LLMD 100%. He is Dr. P. in CT - until recently President of ILADS. If he doesn't know his stuff then who does...?
4. I did blood work on Friday before I left. It came back as 'real good', which probably means the CRP is back to very low and the liver is still holding up.
5. I think that I am going to enjoy the rest of the summer. Forget about the meds until fall. Then probably try a step approach. First the minocycline plus flucanozole and if that goes well add the tindamax. Let's see what the doc thinks.
6. With all this stuff happening, I can't even have alcohol. This is a bummer since the kaypirinha's (spelling?) in Brazil are amazing...
Night night,
Tim
Posts: 147 | From Westborough, MA, USA | Registered: Feb 2004
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