Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Good for you BJK, so happy to hear that something is helping!
What is your amoxicillin doseage?
I would like to get rid of my 10 month headache!!!! Have you taken meds in the penicillin family before?
Amoxicillin is in the penicillin family isn't it?
Feelfit Posts: 3975 | From usa | Registered: Aug 2007
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
If you're reponding to hi-level amoxy (& I assume you're on Probenicid, too, to keep levels up), you should discuss w/ your doc about getting the abx level as high as you can tolerate (plenty of probiotics!) as this is key to a good outcome. 3
3gr/day is adequate for a smaller person (~100lbs), while I would't hesitate going to 5 grams/day if you're closer to 200lbs. Also be aware that most LLMDs add in "fluc" (DiFlucan) every few days to both control GI-tract bacterial overgrowth AND alledgedly weaken the BB spiros directly, via suppressing an enzyme (CytochromeP450) that they use. Good luck!
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Dawnee
Unregistered
posted
Thats great! What does are you taking? I started 1000mg twice daily a few weeks ago and it's really helping me a lot! I don't know what Probenecid is.. but I got switched from Diflucan to Nystatin (which I don't like as well as the Diflucan)
Glad to hear some good news on this board for a change!
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
BJK---
Congrats on your progress! I know of that doctor, and am very protective of him.......could you please delete his first initial? It is a little revealing of who he is.
Also, maybe if people want to know the exact dosage you could private message them instead of posting it publicly.
I say this because I have taken high doses of certain antibiotics and have been heckled by pharmacists. Anything in "high doses" people on the other side of the Lyme controversy do not take to kindly.
I think it is great that you are sharing your progress.....but please delete the first initial of the doctor if you don't mind!
Thank you so much for understanding!!!!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Also, question to those speaking of Probenecid--- is the point behind Probenecid that it keeps the levels more constant throughout the day? Because I know Amoxicillin has a very short half life.
Instead, if Probenecid is only intended to create a high level of Amox in the blood stream, couldn't you just take a higher dose of Amox for that? I have had my levels tested and they are right where my doctor wants them without taking the Probenecid.
So, would I not need Probenecid, or would I take it so that the Amox lasts longer in my body?
Thanks!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks BJK! Glad to hear it. High dose amoxy was very helpful for me too!
Wishing you continued good news and great recovery!
Posts: 2557 | From home | Registered: Aug 2006
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
Dear 'Hoosiers', That is the idea behind Pronbenecid. It keeps the body (more specifically the kidneys) from filtering out the amoxy as quickly. It allows you to take LESS amoxy overall & yet keep the Average [serum]level the same. It's also useful in allowing TWO dosings per day, rather than three, which can work better for some people (Amxy & Prb with breakfast at 8 & again w/ dinner at 8PM. The main drawback... some folks are allergic to the stuff. (Talk w/ your Lyme doc to see if it's appropriate to try for You.)
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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posted
BJK-so glad to hear your good news! I've taken amoxy in the past but it made me SO tired. I could hardly function. Did youhave any fatigue from the amoxy? Thanks!
Best wishes for a full recovery!
-------------------- sunnymalibu Posts: 192 | From california | Registered: Jul 2006
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I have had some increased fatigue but hadn't associated it with this and was wondering why, that's probably it.
I'll take the fatigue if I can get my brain back!
Oh....Dawnee, your mailbox is full...couldn't send you a pm.
Thanks for the additional info...and we'll keep pluggin away at this
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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The probnecid is used to boost the penecillan levels in your body.
There is only so much amox one can safely put in their body. By taking the probnecid, your body can absorb more of the abx, making the amox more effective than not taking it with probnecid.
It is like giving a boost to the amox, there by making it more effective.
Also, please remember if you do take probnecid, you must drink tons of water with it. It can be very hard on your kidney and liver.
Whenever I took the probnecid, I would take it with huge amounts of water to be safe.... I had no problems.
Good luck!
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Well, I take tonnnnnssss of Amoxicillin. And my blood level of Amox has been tested, and the amount is right where my doctor wants it. At least, it is a couple hours after I take it.
HOWEVER, what worried me the most is that I take Amoxicillin twice a day, and I am worried that essentially it is "pulse" therapy because the blood level has probably lowered a lot by the time I take my night dose because of it's short half life.
Would the Probenecid help this concern? It sounds like you all said it would. I am not interested in taking Probenecid to escape taking so much Amox though, because my body handles the high dose Amox very well, and based on what was said that Probenecid is hard on liver/kidneys, I feel like it would actually be safer for me to take lots of Amox than take Probenecid.
My body has seriously not had any problems with the high doses I am taking.....and I've been taking it for a long time. Just worried about blood levels throughout the day.
These are obviously questions for my doctor, but I am of course interested in what others are doing! Thanks.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Hoosiers,(by the way I think hossiers is female)
I don't know the exact asnwer to your question except, that my llmd told me I needed to take the amox 3x's daily with the probnecid 3x's daily
I was taking a pretty high amt of amox daily too....
Also, when I first started taking the amox and zith combo it was w/out probnecid...I did this for 6 weeks. When I went back for my visit, I told my LLMD that I thought the combo was helping somewhat, but still had some symptoms.
It was then that he wanted to keep my amox level high, but wanted to see if he could get it to stay in my system longer. Those were the words he used, unless of course I misudnerstood him.
I thought he explained that probnecid delays the excretion of the abx in your urine, allowing it to stay in your body for longer which in turn allows the amox to work against the bacteria for a longer period of time.
Sorry, if that is confusing.
I do know that probnecid is a banned medicine for athletes, becuase it helps them to hide drugs. Sorta makes sense huh?
Hope this helps.
Elizabeth
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I had horrendous fatigue with Amox - more so than any other antibiotic - even though my dose was not as high as many here on Lymenet. But I tolerated it well, otherwise.
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Congradulations!!!!! Glad your feeling better!
-------------------- When the going gets tough. . . I'll keep fighting! Ms. Geet3721
New LLMD, New abx, New life coming right up!!!! Posts: 714 | From La La Lyme Land | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Liesandmorelies,
Thank you for the great information. I realize this is your understanding of all of it, but it is good info and gives me a launching pad to start looking more seriously into it.
So overall it sounds like this Amox/Probenecid therapy helped you? Did the treatment "stick" even when you went off?
Thanks again for all the info.
Posts: 4590 | From Midwest | Registered: Jun 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
so what is the amoxi dosage?
it is my understanding that amoxi is a cell wall inhibitor, similar to bicillin, is this correct?
thanks
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
I just started a high dose of amox too and have noticed improvement!
I'm taking 1,000 mg. 3 X a day.
Posts: 248 | From Tejas | Registered: Jun 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Does anyone have an opinion as to whether Amoxicillin or Bicillin is better?
[ 09. September 2008, 05:41 PM: Message edited by: Hoosiers51 ]
Posts: 4590 | From Midwest | Registered: Jun 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
bicillin is an IM, i would tend to think it better because it does not disturb gut flora but on the other hand whatever works for YOU is what id suggest.
cheers
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
To address a few questions that have come up in this thread.....
effective for women..not as for men? Well I cant speak for all but Im a man and this has been very effective on the cognitive and neuro issues so far.
As far as dosage..I was hesitant to post on the tread but decided to go ahead....but be advised this is NOT medical advice, its merely what Im taking and is working for me right now.
First...my Lyme doc had specific blood levels he was looking for, not a particular amount in mg's per day. I do blood work every 2 weeks to check my levels 2.5 hours after my morning dose.
I am taking:
12 billion dose acidophilus twice a day, spaced 3 hours from the antibiotic.
20 mg omeperazole in the morning (prilosec)
200mg plaquenil twice a day
2 250/100 malerone once a day
six 875mg amoxicillin tablets twice a day
Also take vitamin D-400, B-50, multivitamin, 500mg vit c 2x daily
and a partridge in a pear tree
So far no troubles on this dose other than the fatigue mentioned by some.
Thanks again for all the great feedback to this post
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
To those of you who have been on/are on amoxicillan, at what point in your treatment did you start it?
I've been treating for almost a year now and haven't been on amoxicillan yet but my LLMD said I may switch to it in the near future.
I started w/doxy, then ceftin (major herx), then zith and now biaxin/plaquenil. I'm nervous about going off macrolides since Myco P. is a problem for me.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
......also, does it penetrate the BBB?
Posts: 2541 | From Northeast | Registered: Jan 2008
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I was on Ceftin, Biaxin and plaquenil for about 15 months before switching to amoxicillin
I have 2 Lyme docs , my regular LLMD and a Lyme specialist
I was not making progress with brain issues...cognitive, balance, other nero issues as well
first the specialist figured out I had babesia anfter 11 months in treatment, and treated this with malarone,
this cleared up most of the remaining severe pain causing issues- stabbing bone pain, shin pains , overall muscle and joint pains, night sweats and some others
so then the specialist recommended the high dose amoxicillin because its so effective at penetrating the bbb
and its still slowly but very steadily improving the brain and central nervous system issues
so yes it definitely penetrates bbb
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
BJK,
Is there a reason you are on Prilosec....does it help with treatment or help any of these drugs penetrate better?
As you know I see the same LLMD as you.
I am on the high dose Amoxicillin too currently, and it has helped with my cognitive function.
I just wanted to give you and everyone an update, because I just spoke with this LLMD this morning.
I asked him about me switching to the Bicillin. I don't know why, but I feel that I've been on high dose Amox so long, that I might as well just try something different.
He said he doesn't object at all to using Bicillin, but I get the feeling he prefers high dose Amoxicillin.
He said he feels more comfortable prescribing Bicillin to people like me who are on Zithro (or something such as Doxy) because they are drugs that penetrate into the central nervous system, because he doesn't believe there is good solid proof that Bicillin does.
He has studies showing high does Amoxy does penetrate into the CNS though, which I assume is the same as crossing blood-brain-barrier.
So in short, he said I could try Bicillin since I'm already on Zithromax.
I am not switching because I have anything against Amoxicillin, I just feel like it is in my best interest to try something new, especially since Bicillin stays in the body at a more constant rate.
I asked about adding Probenecid, and he said it makes the penicillins stronger.....so you can just reduce the dosage of whatever you take. But he seemed to think if you are happy taking the higher doses, no sense in doing Probenecid. At least that was sort of implied. So don't know if it makes it stay in body longer.....? I wasn't going to grill him about it.
Do you all think it was a good idea for me to make the switch?
A little nervous that my brain will turn to mush again now, so we'll see. I don't really have that much to loose I guess. I will keep you guys updated, but it will be a least a week until I see my local GP about getting the shots.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
re: "Is there a reason you are on Prilosec....does it help with treatment or help any of these drugs penetrate better?"
this was proscribed my my regular LLMD back at the very beginning of treatment, I believe just to help prevent common stomach issues.....
so been on it since march 07, havent had the incredible heartburn I used to get since then
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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Im very conscious and very bothered by the amount of meds I take (including psych meds I did not list)
So my thoughts on adding probenecid, while I understand its affects and possible benefits...
I would not add this to my personal treatment unless it was absolutely necessary.
These are the possible 'common' side affects I might expect if I were to add this:
* dizzy * flushing * frequent passing of urine * hair loss * headache * loss of appetite * nausea, vomiting * sore gums
These are the 'rare' side affects
* allergic reactions like skin rash, itching or hives, swelling of the face, lips, or tongue * blood in urine * breathing difficulty * fever, chills, infection * lower back or side pain * pain, difficulty passing urine * painful, swollen joints * unusual bleeding or bruising * unusually weak or tired
So...speaking just for me....if I can tolerate the dose required to reach the blood levels needed,
I'm not going to add yet another med to my body if I can avoid it and still be effectively treated, I already feel like I'm a walking pharmacy as it is.
Often I wonder when I feel poorly and have repetitive symptoms, "how much are the infections in my body, and how much are side affects from my meds"
Its been so long on some meds...I will not really know until I'm off the med
This is not to disagree with anyone already taking this or considering it, only my personal thoughts on adding this to my treatment.
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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posted
thanks for posting some of the issues on amoxy im on a high dose too im taking 1000 mg 4 times per day and add augmentin 875 mg 2 x per day. plus the probiotics and vitamins etc and was wondering about the sore gums thing. thanks for the info~pj
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
"Methods: We have evaluated, at the biochemical and cellular level, the ability of amoxicillin (AX) conjugate to HLA class I molecules and to interfere with the inhibitory signal delivered by the HLA class I receptor ILT2/LIR-1/CD85j.
Results: We have detected AX bound to cell membrane proteins and in particular to HLA class I molecules. Preincubation with AX rendered target cells susceptible to NK cell-mediated lysis.
In conjugation experiments, target cell-bound AX ***hampered tyrosine phosphorylation of ILT2/LIR-1/CD85j upon ligand recognition and the subsequent recruitment of SHP-1 phosphatase.***
Conclusion: Conjugation of AX to HLA class I molecules may mask HLA recognition by inhibitory receptors and attenuate the negative signal delivered by SHP-1 phosphatase, thus lowering the threshold of activation of effector cells."
"Amoxicillin (1-5 mM) induced dose-dependent DNA damage in PBL (peripheral blood lymphocytes)...
The results obtained suggest that free radicals might be involved in the formation of DNA lesions induced by amoxicillin and antioxidant agents may be applied to reduce DNA damage.
Alternative (maybe):
Summary We report a rare case of a male patient without known immunodeficiency consecutively diagnosed with visceral leishmaniasis, brain abscess and cavitating pneumonia in the 3rd decade of life. Chronic granulomatous disease (CGD) was diagnosed by a nitroblue tetrazolium test.
***A p47-phox mutation of the NADPH oxidase of the leukocytes was suspected by immunoblotting and confirmed by DNA analysis.***
The patient was homozygous for this mutation while his mother and sister were heterozygous asymptomatic carriers.
After the CGD diagnosis the patient started a chronic prophylactic regimen with subcutaneous interferon-γ = 0.05 mg/m2 of body surface/three times a week, and oral trimethoprim-sulfamethoxazole and itraconazole - both at 5 mg/kg/day - with no subsequent infections after 12 months of follow-up. "
See the *** =
"A p47-phox mutation of the NADPH oxidase of the leukocytes"
Guess what...
``PKCD plays a pivotol role in stimulating monocyte NADPH oxidase activity through its regulation of the phosphorylation and translocation of p47 pox.''
Bb HAS a PKC INHIBITOR. I think it is PKCD.
Back to YOUR combination:
The combination of amox. and clavulanic acid...
"The combination of amoxicillin and clavulanic acid is used to treat certain infections caused by bacteria, including infections of the ears, lungs, sinus, skin, and urinary tract. Amoxicillin is in a class of medications called penicillin-like antibiotics.
It works by stopping the growth of bacteria.
Clavulanic acid is in a class of medications called beta-lactamase inhibitors.
It works by preventing bacteria from destroying amoxicillin."
"Co-amoxiclav is the British Approved Name, in the British Pharmacopoeia, for the combination antibiotic containing amoxicillin trihydrate a β-lactam antibiotic with clavulanate potassium a β-lactamase inhibitor.
This combination results in an antibiotic with an increased spectrum of action and restored efficacy against β-lactamase producing amoxicillin-resistant bacteria.
This name, unlike co-trimoxazole, has not been widely adopted internationally and the combination product is usually referred to by various names such as amoxicillin with clavulanic acid or amoxicillin+clavulanate
or simply by a trade name such as Augmentin
(by GlaxoSmithKline formerly Beecham), and Exclav - by Neomed or Clavamox - for veterinary use by Pfizer, or Clavamel."
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Marnie...
Isn't the first part of your post about Amoxicillin and the second half is about Bactrim (aka, Septra)?
So are you saying they are equally effective?
Or perhaps even more effective together?
I was thinking of adding Bactrim to my regimin in place of Amoxicillin.
(I know, I just said a week ago I'm doing Bicillin.....now changing mind again.....looking before leaping so to speak)
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Okay, as I was typing that, it looks like you added more to your post!
I am assuming Bactrim is "trimethoprim-sulfamethoxazole and itraconazole"
Now seems like Augmentin is the third drug mentioned here......
Which one is best (Amoxicillin, Bactrim, or Augmentin) or are they all good?
I'm on Mepron and Zithromax and was thinking of discontinuing my Amoxicillin and adding Bactrim because I would like my third drug to address Bartonella as well as Lyme. Any thoughts?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
The alternative included:
prophylactic regimen with
subcutaneous interferon-γ = 0.05 mg/m2 of body surface/three times a week,
and oral trimethoprim-sulfamethoxazole (Bactrim) and itraconazole (Sporanox)- both at 5 mg/kg/day - with no subsequent infections after 12 months of follow-up.
Interferon y
"is an interesting protein that exhibits a number of different biological activities. In addition to its antiviral activity, HuIFN-y (human IFN-y) has been shown to exhibit potent immunomodulation and cell proliferation-inhibition. properties
Sorry...we're posting at the same time...see the amox. + augmentin...the whys (I edited above to explain further).
Amox. + augmentin
OR
INF-y + bactrim + Sporanox (used for toenail fungal infections)
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
EDIT--
Deleting this because you answered it.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Isn't Amoxicillin part of Augmentin anyways though?
Maybe Augmentin can be an alternative for those allergic or sensitive to the sulfa in Bactrim.
Either way, thank you for posting this, Marnie. Glad to see you back.
Wonder which of those two protocols is better, or if it varies person to person. Probably the point is that they both work.
Posts: 4590 | From Midwest | Registered: Jun 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
he got me 80% better 10 years ago-got me out of bed, able to work, no more foot pain
we agreed to stop abx cuz i have the gene that gives me arthritis and joint pain was my only remaining symptom
we used combos and pulsing and detox too
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I'm glad you are finding something helping, BJK. Great news.
Are you back to work yet? I think we pm'd several months ago, and I remember your story.
I did return to work in August. I still have some problems that flare up - fatigue, etc., but am trying to manage it with methylcobalamin B12 shots and abx.
Have you ever tried doxycycline? That cleared my brain up pretty well unless I get very tired.
Good luck to you.
Posts: 1954 | From Illinois | Registered: Aug 2007
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One of the several reasons is that stress is still a major factor in the intensity of my remaining symptoms, and also affects whether or not im making progress
Ive never been prescribed doxy, who knows though, we'll see how this turns out; my next appt is in December....nice to hear from you
BJK
-------------------- BJK
Nothing I write here is medical advice...I'm just another lymie sharing how this disease has affected me personally Posts: 175 | From Central Maine | Registered: Sep 2007
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