posted
Let me say that I have not yet had good treatment
Was on doxy 7 months noted some positive changes but also needed to have sinus polyps removed. Was doing pretty well so. LLND took me off and started me on yeast diet and supps
Crashed hard......wasn't sure if it was yeast die off or Lyme coming back......but the Lyme did come back
LLND put me back on doxy for about a month but it didn't help as before
Referred me to supposed llmd who put me on biaxin. It's only been two weeks but I consistently feel at least as bad if not worse than I ever had. I doubt it's a consistent Herx or is that possible?
How do I know if it's working.....almost feel like just going back on doxy until I see a true llmd (thanks tf) because I don't feel like biaxin is doing anything positive for me.
Also what connection does yeast diet have? Have I read that coinfections emerge when you are treating Lyme? Maybe that is what is happening. Making no headway at all on biaxin.
Thanks!
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
PME,If it helps answer your question,I was having reactions pretty much non stop for aa solig 6 months.A real test of my strength and courage. I am sure there are others here that couls also confirm that the duration of the herxheimer reaction can be long and drawn out.
Posts: 342 | From northern california | Registered: Dec 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Biaxin can be a difficult med to tolerate. It can have unbearable side effects.
It is difficult and sometimes impossible to separate out side effects from a med from a herx. So, look up the side effects of Biaxin and see if they match what is happening to you.
Here is a thread where we recently discussed bad side effects of Biaxin:
Some people claim they herx continually, but that to me indicates an inability to detoxify.
A herx is an increase in your regular lyme symptoms and perhaps added in new lyme symptoms. It generally lasts from 1-2 weeks. (But if you can't detoxify, it can go on and on.)
If what you are experiencing does not line up with that, then you may be experiencing biaxin side effects.
No matter which it is, if you can't tolerate it, you can ask for doxy again. Just know that if it gets warm and sunny, you will have to stay out of the sun or be in danger of the dreaded doxy burn.
The anti-yeast diet is the diet a lyme patient must eat when they are on good lyme treatment (high dose combinations of antibiotics). If you don't you will get yeast (thrush) in your mouth and throughout your digestive tract and be as sick from that as from lyme.
Check your tongue first thing in the morning to see if it has a white coating. If it does, you have yeast.
You must also take high quality probiotics to keep the gut flora normal and not be overrun with yeast.
Coinfections often emerge when treating lyme, but I would not say that you are actually treating lyme. Are you on a lyme dose of Biaxin?
"Clarithromycin- Adults: 250 to 500 mg q6h plus hydroxychloroquine, 200-400 mg/d, or amantadine 100-200 mg/d" (p. 18 Burrascano Guidelines)
That translates into 250-500 mg every 6 hours plus hydroxychloroquine or amantadine
Also, 2 weeks is too soon to think that your lyme treatment has so beaten down lyme that the coinfections are now emerging.
My guess is that you are suffering biaxin side effects. BUT, without you saying what specifically is happening, there is really no way for me to tell.
Give us a description and we can try to figure it out for you. And, give your dose also.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I'm one who herxed constantly. I won't depress you by telling you for how long. I could tell the monthly herxes, but still... I felt horrible the entire time.
Biaxin worked well for me... but I felt awful while on it. Hope that makes sense!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
How long until you know the antibiotics are working?
It is different for each person. I didn't notice any difference for 6 months. However, when I got my first 30 days of doxy, I must say that some very little recent symptoms went away, so if you want to count that, you can. But, in general, I didn't feel any different for 6 months.
Others notice a difference sooner or later. It seems to have a lot to do with how long you had lyme before starting treatment. Also, this all assumes you are on high dose combos of antibiotics--good lyme treatment, in other words.
Just on biaxin and if it is a low dose, I really doubt you will notice anything no matter how long you are on it.
Posts: 9931 | From Maryland | Registered: Dec 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
when i first started biaxin, i actually saw bugs and people. one time the ceiling was rolling like a wave, back and forth. and i looked over and there was a large scorpion on my husband's shoulder.
then i woke up one night and saw that death figure with the scythe in the hallway. talk about scary.
this went away but sure scared the heck out of me. plus the taste is awful. it kicks in about day 3-4. ugh..metallic is a perfect way to describe it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I know what the yeast diet is......I have been on it since January and will stay on it. Miss a glass of wine every once in a while
I guess I thought that the 8 months of foxy would kind of count towards my total abx time. I def herxed and some things felt better after a couple of months. I think the yeast detox initially Was tough on my liver that's when things started tanking again
I looked at side effects. Yes metallic taste. I did have some night sweats for a few nights. I think it's either a coinfection or Herx. My liveris def taxed. I have a lot of pain. I do cranial sacral pt. that is where they almost always work lately. Has me interested in detox and sauna ideas
Symptoms that seem worse Fatigue and absolutely debilitating post exertinal crash The crash lasts longer than ever before Severe stiff neck Severe brain fog Bad headaches Increased numbness Chills Swollen painful glands in my neck on the right Some liver/spleen pain Some nausea
These are the Worst ofthe symptoms or the ones that have gotten worse. I had 2 decent days.......not in a row but 2 where I didn't feel near death
Of course with feeling like crap comes some emotional stuff too anxiety ESP about not being able to do things and about my future. I think that is probably pretty normal given the circumstances.
Yes. Scary biaxin stories
These sx seem more Lyme or co related than side effe ts to me
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
Dang. Not again. Autocorrect always changes doxy to foxy. What is up with that? Isn't it enough work to type once without correcting the mistakes? Ugh
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
As I am looking at the screen I realized I forgot to say increased floaters/vision problems Increased difficulty being in crowds (processing and fatigue related) are symptoms too
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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quote:Originally posted by pme: Let me say that I have not yet had good treatment
quote:Originally posted by pme: 500 mg biaxin 2 times per day
In all honesty; your quotes above & signature line gives many answers as to whats going on.
I was told;
quote: You need to learn all you can about LYME & CO, too do this you need to read the treatment guidelines.
So I started to read them, and still re-read them daily. I'm glad I do..
Monotherapy treatment did nothing other than hold the bugs at bay until I could get in with a real LLMD.
I moved on from many so called treating doc's who took my insuance card, they were self proclaimed LLMDs. Still I thank those reg doc's everyday (they did try to help) and in a way they did, they gave me bridge to gap time.
One told Me he has treated many thousands and got them well. Only to find out later on in local group meetings, the patients had just move on because he didn't do much for them.
A lot of treating doctors use monotherapy on the chronic patient to no avail. This was ineffective in myself and many others.
-------------------- Let us not become weary in doing good,for at the proper time we will reap a harvest if we do not give up. -- Posts: 247 | From HOME | Registered: Oct 2011
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Lymedin2010
Frequent Contributor (1K+ posts)
Member # 34322
posted
Of all the med combos that I have taken so far, I have found the COMBO of Doxy AND Biaxin to be the best.
I was prescribed 300MG Doxy/day and sometimes on my own take 400 and 500MG/2xD Biaxin.
I have heard of others getting better with this combo as well. One person in particular took Doxy for 2 weeks then Biaxin for the next 2 weeks, alternating for 3 months. It is what brought them back.
Posts: 2087 | From NY | Registered: Oct 2011
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I know I am under treated. Wondering it it even worth dealing with the side effects or if I should just stop abx until I see Llmd.
The irony of this is this is such a complex disease to have treated and the responsibility falls so hard on the patient who has such awful brain fog that it is almost impossible to take it all in.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You definitely need to tell the next lyme doctor about your responses to treatment to date. Your reactions appear to me to all point to an inability to detoxify.
If the next doc (real lyme doc) agrees, things will be given to you to detoxify you so that taking meds won't be so hard on you.
Be sure to tell the next doc how the low dose doxy made you herx and how sick biaxin is making you. You may want to stay on the biaxin for at least 3 weeks since 2 week herxes are not unheard of by any means--just to see if the possible herx goes away. But, if it is just too bad, you may not be able to.
All of this information is needed by the next lyme doc who is going to be prescribing medications for you.
I agree with you that your symptoms do not sound like side effects to biaxin. They sound like lyme and coinfection symptoms getting worse.
Here is a quote from notes I took at the recent Lyme Conference in Toronto. Dr. H speaking:
"Some of his patients get better with glutathione alone. It opens up the detox pathways (is an anti-oxidant)."
Then, a person who went to him for the first time recently wrote this to me:
"I went last week and (name) gave me iv glutathione the minute I walked in the door and wow did that help. Took away one layer of the pain (really the worst layer) and now I managed to start so many meds/supps without a lot of distress.
They have me on (names various meds) Bicillin injections and lots of supplements including liposomal glutathione. ...
I started the 1st 3 meds and can't believe my MCS didn't kick in."
This, to me, is an example of how a top notch doc identifies a person who cannot detoxify right off the bat and treats that problem so that good lyme treatment can be done and the diseases killed without draging the patient through a living hell.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Is difficulty detoxing common with Lyme or just something that makes it more difficult to treat
Went off biaxin today and onto dozy again. I couldn't take it.
Thanks for all the great info and for helping me organize what to tell the llmd when I see them.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Evidently inability to detox is a genetic thing. Some people are being tested for it.
Both of these are on page 1 of Medical Questions right now.
All I know about glutathione is what I got from Dr. H's notes--it is an antioxidant that opens the detox pathways. From the patient report you can see that it is given IV and other ways also. Evidently the IV is the best way, based on that person's report.
I never had the detox problem, so I am not the one to ask.
After you read the 2 threads above, you may want to start a new post with appropriate title and ask questions on the topic. That will get the attention of the people in the know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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