posted
I have been reading about what happens on doxy only
When I was diagnosed last year my LLND put me on 200 mg doxy per day for 7 months
I have been reading here that doxy causes more spirochetes to form cysts. If that is what happens.....what would you expect to happen once foxy is removed? Do the spirochetes then reform and become active again causing a symptom flare?
I crashed hard within 2 weeks of doxy removal and it did help make life more manageable. But the LLND started me on the yeast diet and supplements at the same visit that the doxy was discontinued.
I definitely had die off symptoms but I am trying to figure out if the crash has to do with yeast die off which definitely challenged my system or doxy removal ind an increased active infection. What does all of this have to do with the liver and detox?
Why would it be that after o e month when I went back on the doxy it didn't seem to help as it had before?
-------------------- 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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Rivendell
Frequent Contributor (1K+ posts)
Member # 19922
posted
If you were given Doxy immediately upon tick bite, seven months would most likely kill it.
But, if the Lyme has deseminated throughout the body, the Lyme gets very smart, very fast and learns how to evade the immune system and antiobiotics.
Then some of the Lyme may encyst in response to antibiotics or attacks from the immune system.
In that case, you would need a cyst buster along with the antibiotic. (Flagyl or grapefruit seed extract.)
But, many people just stay on Doxy because it is inexpensive and doesn't raise eyebrows with the insurance companies. (It is also prescribed for acne.)
These people say it may take a few months to a few years on it, but eventually they get back 80% to 90% of who they used to be before becoming sick.
But if they go off of it, they get sick again, because the encysted Lyme becomes active again.
People stay on it for the rest of their life.
It just depends on your circumstances. What you can afford to pay for treatment. If you have a coinfection that Doxy doesn't treat, etc.
So, if you continue to get worse, then the Lyme may not have been completely killed because it encysted. Or you may have a co-infection.
Hope this helps.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
That does make sense. For me it was disseminated by the time I went on the long term low dose doxy. Like I said the doxy did help somewhat when I was on it. It wasn't the entire answer but I can definitely say it helped.
Thank you
-------------------- 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
At the top of page 12 of Burrascano Guidelines, it says that 200 mg of doxy per day is a bacteriostatic dose.
That means that it is not enough to kill lyme, just enough to stop it from multiplying. So, you likely felt better because the doxy was stopping the lyme from multiplying.
At that dose, you also were probably able to handle the small, if any, amount of toxins that were created by the doxy.
Once you stopped the doxy, the lyme was again able to multiply and make you sicker.
A lyme patient is supposed to be on an ANTI-yeast diet all during lyme treatment. (Read it in Burrascano.) It sounds like you weren't. You are also supposed to be taking probiotics during antibiotic therapy. They must be taken at least 2 hours after antibiotics so that the antibiotics don't kill the probiotics. You are also to eat yogurt and drink kefir. Read it in burrascano.
You need a very good probiotic. That generally means you need the refrigerated kind. Acidopholis off of a shelf won't do anything.
I am guessing that you were started on an ANTI-yeast diet after the doxy was stopped. Why was that? Did you have signs of yeast?
A good lyme doctor has a person on anti-yeast meds while they are being treated for lyme and also has them on the anti-yeast diet. So, you should have been on good probiotics and nystatin while on the doxy and also told to eat the anti-yeast diet the entire time.
This is all done to prevent gastro-intestinal yeast due to long-term antibiotic therapy.
If you now have yeast and lyme, you will be sicker than if you just have lyme. You can't expect to get back to how you felt before yeast until you get rid of the yeast. So, that's why going back on doxy would not change anything for you right now.
Yeast symptoms are often as bad as or the same as lyme symptoms.
If you have yeast, you now need a prescription medication to get rid of it. The very, very best one is diflucan. If you see evidence of yeast on your tongue or have bloating, gas, etc., then call your lyme doc and ask for a prescription for diflucan to kill your yeast.
If you had a yeast die-off, then I assume you were given something to treat yeast. If you cannot detox, the die-off from yeast would make you a lot sicker. Any die-off makes a person sicker if they cannot detoxify.
If you can't detox, adding in Biaxin would also make you a lot sicker since the Biaxin is also killing germs. If you can't detoxify dead germs (called "die off"), you will just get sicker and sicker the more germs that are killed.
If you can't detox, getting a flu shot or tetanus shot or anything else that will create more dead germs (toxins) will just make you sicker and sicker.
This is nothing to ignore. Getting so toxic that you can't handle any meds is a condition that needs treated. You won't feel better until the toxin load is gotten rid of.
You won't be able to start lyme treatment until you detoxify. A good lyme doctor may sell you a good liver cleanse kit or other detox products.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Ok. Here is the story. The nd put me of yeast diet to see if it helped allergy symptoms
First finally found my way to her in may of last year Put me on doxy. Herxed some on and off for a cpuple,of months and felt better but progress seemed to be impeded by sinus issues. All in all doxy helped but lyme did not seem to be the only issue
So I had surgery for sinus polyps in November (my third surgery for the same issue)
Because my glands were still swollen as of January she decided to see what yeast free dairy free sugar free gluten f ree diet would do At that time my glands were really the only thing that was bothering me. So we decided to see what would happen off the doxy.
She also put me on supplements to help with yeast die off but. Not diflucan.
The rest has already been posted. It has been all down hill from there........
-------------------- 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
When a lyme patient has surgery, it allows the lyme to grow like crazy.
The lyme takes advantage of any period of weak immunity. So, people with lyme put off having all surgeries as much as possible.
Some say that steroids are always used in connection with surgery--either in connection with anesthesia or in some other role. If steroids were used on you, that is another reason for the lyme exploding after surgery.
It is typical for a lyme patient to go very much downhill if they have surgery. You want to be on high dose antibiotic combination therapy before having any absolutely necessary surgery.
When taking antibiotics for lyme, you must follow the anti-yeast diet in Burrascano. It is basically a no carb diet--so no sugar, no fruit, no grains, nothing made from flour, no potatoes or corn, etc.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Also, Burrascano says that if you have had lyme for at least a year you definitely have coinfections also. So, you can be sure that there is more than lyme going on in your case.
Until you get good lyme treatment and until the coinfections are also treated, you are not going to feel better. You will just go downhill.
When you get to a good lyme doctor, all of this should be taken care of.
I know it is very tough waiting for that appointment. It is like being consigned to hell.
I hope you can get help from someone while waiting for that first lyme doc appt.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Oh tf. You are preaching to the choir about surgery. That is why the Lyme cropped back up in 2008. It was after sinus surgery and I hadn't slept for almost 3 years before that because of my daughters medical issues and the net put me on prednisone prior to surgery
So I think the under treated Lyme from 2006 just took advantage of that whole situation. But when I suggestednthisnto an ID dr at the time he didn't take me seriously. I did test positive several months later and we treated with another two weeks and tested for everything under the sun but nobody revisited the Lyme issue with any seriousness. I had the answer staring me in the face for over 3 years and it wasn't taken seriously.
Then I come on here and see all these people who have connections with Lyme and surgery. It's crazy no dr would believe me.
I haven't been the same since 2008 when I had the second of the three surgeries. I did breeze through this last o e and I needed it because I could not breathe and was getting constant infections. Thank god Imwas being treated at that time.
-------------------- 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
Oh tf. You are preaching to the choir about surgery. That is why the Lyme cropped back up in 2008. It was after sinus surgery and I hadn't slept for almost 3 years before that because of my daughters medical issues and the net put me on prednisone prior to surgery
So I think the under treated Lyme from 2006 just took advantage of that whole situation. But when I suggestednthisnto an ID dr at the time he didn't take me seriously. I did test positive several months later and we treated with another two weeks and tested for everything under the sun but nobody revisited the Lyme issue with any seriousness. I had the answer staring me in the face for over 3 years and it wasn't taken seriously.
Then I come on here and see all these people who have connections with Lyme and surgery. It's crazy no dr would believe me.
I haven't been the same since 2008 when I had the second of the three surgeries. I did breeze through this last o e and I needed it because I could not breathe and was getting constant infections. Thank god Imwas being treated at that time.
-------------------- 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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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Curious what is the lower limit of the bacteriastatic (?) dose for Doxy? 100 mg/day?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
I believe that Sappi did a study recently which indicated that amoxycillin somehow (at least in a pitri dish vitro) did not cause the kites to go into cyst form.
Indeed I have a spoken to a few patients of Dr H (ny) who say they are on amoxycillin.
I wonder if eva sappi has followed up on this research? j
-------------------- jeremy Posts: 71 | From new york city | Registered: Sep 2011
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susank
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Member # 22150
posted
pme - your first post this thread - 4th paragraph - "....crashed hard after doxy removal....life more manageable".... I am trying to understand that.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Brain fog I meant that doxy did make some difference for me as could be determined by the fact there was a big difference after it was removed. I didn't mean that the crash made life more manageable. If crashes made life more manageable we would all be in great shape. Lol
-------------------- 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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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
pme - thanks for clearing that up. i am very interested in the bacteriostatic dose of Doxy.
am trying to remember about Doxy and will do more research - but in the meantime have questions here.
i think i have read that doxy does not push Bb into cyst form as badly as some other Abx do.
I think that possibly one does not become resistant to it - or rather the "bugs" don't. ie taking Doxy - stopping - and re-starting - with less effect. i think i read that in Dr Brown's book in ref to tetracyclines and their use in arthritis etc. i think the same holds true if it is taken in low dose.
i loaned out my book - when i get it back will search for his research on this. or will research on www.roadback.org website (?). Dr Brown's premise was that folks might have a kind of allergy to bacteria. he/his patients have had great success with low dose tetracyclines.
i read also somewhere about low dose Doxy and MMP-9 - that Doxy helps in a good way there - and otherwise as an anti-inflammatory. i think this can happen with the non-antibacterial dose of 40mg/day.
i have taken low dose Doxy on and off past years. 50 mg/day as prescribed by my eye doctor for dry, painful eyes. a few months ago i took 100 mg/day of Doxy (along with my IVIG treatments) for a LD Igenex challenge. oddly enough - i had fewer bands show up. ???
i have been looking at my notes and i realize that the IVIG and 100 mg/day Doxy i was feeling better. must have been - i was actually able to ride my horse. i even galloped him at very short stretches. i had forgotten.
i stopped IVIG and Doxy for three months to do more diagnostic tests (one of which resulted in a positive culture from Advanced Lab). those three months were awful. i re-started the IVIG but not the Doxy. i got my positive test and decided to treat with herbs. i feel more dreadful now than ever. i think they are killing something - but don't know if i can do the herbs after all. i also don't think i can do Doxy full strength Bb killing dose.
one has to wonder about the bacteriostatic "theory". if low dose prevents replication of the little monsters - would they not eventually "zero out"? of course some will go into other forms - but the Bb load and toxin release would eventually be lower and easier to deal with?
PS - does Doxy have any effect against Bart? i have totally forgotten......
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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susank
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Member # 22150
posted
to add: i think Dr Brown said MycoP not developing resistance to Tetras - other "bugs" don't know.
pme - with your sinus infections - etc - have you ever had your Immunoglobulin levels checked? the total serum tests for IGG., IGA., and IGM and subclasses. ie for possible CVID - qualifying you for IVIG?
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
I haven't and I also had to look that up. This is why I am waiting on a good llmd.
-------------------- 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
I haven't and I also had to look that up. This is why I am waiting on a good llmd.
-------------------- 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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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
pme - no need to wait. you can get the tests done through online lab. www.privatemdlab.com
The Immunoglobulin total serum test for IGA, IGM and IGG. The test is with Labcorp. No insurance - its about $60 to do.
Then you can have the results to take with you to the LLMD. He might want to re-test to include the subclasses - or maybe PMDL does those as well. They probably do - call them and ask. Or wait for the subclasses to be ordered by the LLMD - then insurance should cover that "extra" (but also important) part of the test. Or maybe your sinus doctor or GP could order them all?
These tests are not for LD. So any doctor should be able to order them. But many folks with LD are deficient in their Imm. levels.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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