posted
I have lyme, 2 strains Bart, Babs Duncani., FL1953. Also parasites (two positive tests and seen them) I have been treating for four years.
I am currently on IV Gentamicin, IV Doxy, IV Roecephin, IV Fagyl, Each pulsed in combos on different days throughout the week.
Currently my lyme level feels really under control almost non existent. My Bart is feeling like it is getting under control after trying many different things for the first time in four years.
So of course my Babesia Duncani is starting to rage out of control, stiff neck, air hunger, night sweats etc..
So my question is; What is your opinion on treating everything at once? Adding Malarone or Mepron to the mix? Also treating parasites other than flagyl?
I think the two days of flagyl per week may be helping with cyst form but not doing it for Babs.
I know I am on a lot right now. How much can the body, liver, pancreas take?
My main reason for asking is that I haven't achieved remission treating separately however, I have never done IV's until now.
I also have never had this extensive of a combo of antibiotics at once.
Just a side note; My diet is clean. Candida is controlled. I do IV glutathione plus extensive detoxing which helps.
As all of you know there is just so much to treat at once but frankly I am exhausted playing the bang the pop up squirrel game over and over.
Any thoughts?
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
yay Delljen re the bart (you know I had to cheer this on!) it sounds like the gentamicin/doxy combo is finally working?
Others will chime in here re the babesia, but yayayay!
Posts: 3528 | From US | Registered: Apr 2007
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posted
I've never heard of anyone who was on 4 IV drugs at once. (for Lyme & Co) Be VERY careful with the gentamicin. Make sure to read the warnings on that one.
Flagyl won't get rid of babs, so maybe some malarone would be a good idea.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I went IV but did not do all abx IV. So I too am surprised that you are on all IV.
Oral Flagyl is usually given two weeks on and two weeks off. Most of us with Babesia are taking Mepron or Malarone. Some doctors add herbals Arteminisin and Cryptolepsis.
Treating aggressively is okay as long as your liver enzymes don't go up and you don't have herxes so severe that you are in agony. Going too aggressive can start a cytokine storm.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Thanks CD! I am feeling a change fingers crossed. I'll keep you posted.
Faithful and Lymetoo. I couldn't agree more about the number of IV antibiotics I am on at the same time. My LLMD all of the sudden changed me from conservative orals to many IV's.
I know the risks of Gent. Believe me I have tried many many different combos for Bart and seen a specialist BLMD with no avail.
My Bart was out of control and causing damage so after weighing my options and reading all of the research I felt I needed to take the chance. I am on week 3 of Gent/Doxy with no side effects and we take blood levels all the time. It seems to be killing the bart (she said hopefully)
My liver enzymes have always tested out well, however I am big on detox and liver safety.
Faithful, I like the idea of pulsing flagyl orally. I personally hate that drug. I feel it working but it doesn't agree with me the way tindamax does.
You both gave me me a lightbulb moment that I should talk to my LLMD about changing flagyl or tini to oral pulse and then adding malarone and/or arteminisin for Babs. Doing this while keeping a watchful weekly eye out for liver stress.
Thanks you guys. Means a lot.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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posted
You both gave me me a lightbulb moment that I should talk to my LLMD about changing flagyl or tini to oral pulse and then adding malarone and/or arteminisin for Babs. Doing this while keeping a watchful weekly eye out for liver stress.
-
Sounds like a good plan! Tini is much easier on the body too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I was reading in the guidelines that the 4th week of IV abx is the worst.
Maybe wait until the worst is over until adding in something for babs?
I agree with Lymetoo, Tinidazole is great, and much easier on the liver.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Since I am not very well versed on treating with antibiotics, but others here are, I will just give my opinion on the concept itself.
People infected with Lyme often have one or more of the more known coinfections. In addition to that, there are often viruses, parasites, mycoplasma and who knows what else? Not all of these were necessarily aquired with the Lyme but were previous issues that only got out of control when Lyme's immune system suppression effects kicked in.
The knowns are bad enough. The unknowns keep some from ever reaching the point of recovery. This is even true for other diseases. I have Crohn's and have some success treating it by removing pathogens that are commonly thought involved with the disease. Missing one has kept me symptomatic until recently, as it is not commonly associated to the disease.
I refer to this broad treatment while focusing on the main culprits using a shotgun with the use of a sniper also. Main treatment on the knowns, with an broad spectrum of treatment to kill the unknown enemies as well.
I think it is a good method for those that have not recovered or responded well to the more conventional treatment.
The approach for those that cannot or do not have access to antibiotics might be using MMS to clean up the many pathogens it works on, along with frequency treatment targeting specific infections. Maybe using digestive enzymes on an empty stomach to weaken cyst form.
Some combine antibiotics with alternative approaches to achieve a similar purpose. Whatever gets you well.
I think your approach should bring improvement, but if it does not complete the job just know there is almost always a way of killing most any pathogen. Adjust the treatment to target what may have been missed. It's not always easy, but it is always possible.
Good luck.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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CD57
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posted
I'm sorry but Carmen, this is just not helpful. Can you delete this last post please?
Posts: 3528 | From US | Registered: Apr 2007
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posted
There was a recent discussion on pulsing antibiotics. Since you did not post the schedule you are on I am not sure if my previous comments apply or not.
My opinion is that antibiotics for bart and babs should not be pulsed.
But in your case you are taking 3 meds that supposedly have some effect on bart -- the gentamycin, doxy and rocephin. If you are on one of those 3 meds every day then it might work. But if there are days that you are not on one of those 3 meds then I feel that your bart treatment will not work longterm.
Have you thought about adding the amino acid arginine to your bart treatment? Might be helpful. Supposedly arginine is contraindicated with FL1953, but still might be worth trying to knock out the bart first.
Generally if a person can tolerate it then I do feel treating all known infections at the same time is the best way.
I think at this point it would depend on how much babs treatment you have done in the past. It is very hard to know if treating babs would just make you feel better or if it would cause an extreme herx.
Technically both the doxy and flagyl should both be helping with babs.
I think the easiest thing to add would be oral ivermectin. Or other alternatives would be malarone or Zithromax or clindamycin.
I have not researched any of the combos to see if the meds I am suggesting are compatible with your current meds.
Personally if you switch to oral flagyl I would do that daily and not pulse it. When hubby did IV flagyl it seemed to be 10 times as strong as oral even though his oral dose was 2 or 3 times what the IV dose was.
You did not say if you were on lumbrokinase or systemic enzymes such as wobenzyme. Adding one or both could be beneficial to overall treatment.
I think to get really aggressive with babs you will first need to get rid of the bart. Just do not think both can be treated aggressively at the same time. Would require too many meds in my opinion.
This is not medical advice, just my opinion based on hubby's experiences.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CD57
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posted
We all know this! but this post frustrates me because if you've spent any time on here, you will see that people are extremely knowledgeable for the most part, and do their own research, and know way too much about all the meds. Delljen is one of these people, and so am I. There are many more.
The horror stories have no place here, it's a place of hope.
Posts: 3528 | From US | Registered: Apr 2007
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Kudzuslipper
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Member # 31915
posted
CD57. With all due respect. I like to hear all sides. Especially from someone who was/is a nurse. And there are new people here daily... In shock and confused...and this may be the one thread they happen to focus on....
I think we are all so desperate, and so many of us are our creating our own protocols, with or with out an llmd, cause let's face it the llmd's don't really know either. And unlike chemotherapy.
Lyme treatment is usually done with no support should something go wrong. I think we should all pursue lyme "chemotherapy" with caution and all the knowledge, good and bad possible.
But Carmen, did the women die of anaphylactic shock? I know I get rashes when I herx. It's not candida, it's not allergic it is a herx.
Posts: 1728 | From USA | Registered: May 2011
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Judie
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Member # 38323
posted
delljen - I just started with a new LLMD and she believes in treating everything at once IF you're symptomatic.
I have several infections other than Lyme (I just got reinfected with a new host of infections). I had 11 infections last year and there are at least 2 new ones added to the list.
I did the "treat one infection" last time and I feel like this delayed my progress. The doc thought my immune system could deal with viruses on it's own once it got a little stronger.
WRONG. My last blood work showed they were raging out of control.
This new doc is targeting viruses and mycoplasma along with Lyme and company.
I could actually hear her thinking out loud looking and muttering, "What are we doing for babs? Oh, let's see, this will cover bart, etc...." while looking at my file.
Another doc that I like to work with believes in treating clinically too.
I really like this approach. I think it meets the patient at the place of what they are experiencing today.
Just keep monitoring your liver and your symptoms if you add something new.. You're body might actually start doing better adding something else to the mix.
Good luck.
Posts: 2839 | From California | Registered: Jul 2012
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Judie
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Member # 38323
posted
For babs, I'm currently taking Artemisia Annua tincture because it doesn't have the liver risks associated with the extract.
The issue that Carmen described has a lot to do with the doctor not being able to recognize a drug-induced allergy rash.
I'm allergic to at least 5 antibiotics and several meds. There's a very specific rash that goes with this.
It's not the same as a candida rash at all in my experience (I've had both).
My doctor and I work with what my body is okay with using. I wouldn't have made any progress without doing high doses of combination antibiotics.
If I could tolerate more kinds of antibiotics, I'd be grateful.
Do what agrees with your body.
Posts: 2839 | From California | Registered: Jul 2012
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posted
To everyone; thank you for all of your opinions. When everyday of your life is spent studying and researching any information that you can get yours hands on about how to beat lyme and co’s it can be overwhelming to say the least.
I research, I think, I work with my LLMD and I listen to my body and still I can get puzzled and overwhelmed about certain decisions.
That is when I come to lymenet and post a question. I appreciate any and all information I can get.
I believe that this is a place of hope and grace. A place where we can learn from sharing information and experience. So I thank each of you.
CD - Thanks for being in this bart battle with me. You rock.
Carmen, the experience you had with your mothers friend sounds awful and traumatic, I am so sorry. It is sometimes hard to hear information like this but I am a lyme warrior and I need all the information I can get good or bad. So thank you for sharing.
Bea, we met in Minnesota and you impress me in more ways than I can say. Thanks for continuing your generous commitment to the lyme community. I appreciate the advice you posted for me today. I was so hoping that you would read my post and offer insight. I am going to reread your response and may PM you with some Babs treatment questions. Thank-you.
To everyone who took a moment to share your opinions thanks. I am going to think about everything your guys shared.
If you think about it, whether to treat lyme and co’s all at once or separately is a daunting question. Because it is stressful for the body either way. I am thinking that mixing antibiotics with herbals including ones like Artemisia Annua tincture that Judie spoke of which are easier on the liver may be a way to hold the Babs at bay while concentrating on killing the Bart and Lyme.
I also think DBergy’s thoughts on keeping in mind other pathogens and other viruses and how to address them is interesting. What I keep coming back to is that the strongest defense available to us is our own immune systems. That is what is going to beat these diseases for us.
So, the most important question may be how to we fight lyme and co’s using the arsenal available to us; antibiotics, antiparasitcs, herbals....etc.... while we also create within ourselves a really strong immune system?
Maybe a new thread should be, posting any ideas about how to promote REALLY strong immune systems.
One thing I know is that we are all stronger working together. Together I know we can all beat this terrible disease.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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I agree that the immune system is very important. I do think that is one thing that hubby did not focus on enough. We did several things over the years, but when he took an antibiotic break he wanted a break from supplements in pill form as well and unfortunately I did not continue with tinctures for immune support.
And then he got the 2 new tickbites and went back on IV antibiotics and we did not have the funds to continue with all nutritional supplements he had previously been on.
Anyway -- as far as immune support -- I would suggest herbals. Some of the best ones to try are rhodiola, ashwagandha or Siberian ginseng. Many tickborne patients are very sensitive to these adaptogens and have to go low and slow.
It seems to me like from hubby's experiences and other patients as well -- if you have a severe babs infection then LDN (low dose naltrexone) does not seem to work -- herxes can be extreme and lead to ER visits. I have been meaning to research that to see how it modulates the immune system.
Have been doing some reading recently -- babesia seems to be definitely subject to immune system response.
One easy test that many LLMD's do not do -- zinc deficiency makes babesia microti worse in mice. There are a couple of journal articles on that.
The journal article -- Persistent and relapsing babesiosis in immunocompromised patients -- states that CD20 B cells are required for antibody production to fight babesia. Maybe that could be tested as well.
The journal abstract -- Human babesiosis: recent discoveries -- discusses that a Th1 dominant CD4+ T cell immune response is needed to fight babesia microti. That could also be tested. There are quite a few additional journal articles talking about the Th1 immune system and babesia.
A lot of chronic tickborne patients are stuck in a Th2 immune pattern I think -- or I could have it backwards.
Anyway -- I think that is definitely something that could be another angle to work on.
If my p.m box is full -- send an email instead.
seibertbb (at) yahoo (dot) com
Bea Seibert
P.S. Reading another post -- other options to improve immune function include transfer factor and various mushrooms. Neither of those options seemed to do much for hubby. But as with many nutritional supplements it depends greatly on dose and also the quality of the products.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Don't remember if you are actually from Minnesota or not. But I ran across a journal article that I thought was interesting. I do remember you saying you have bart vinsoni I think.
The title of the article is "Cosegregation of a novel Bartonella species with Borrelia burgdorferi and Babesia microti in a Peromyscus leucopus." Basically the article says that the species of mice listed in Minnesota were tested and were infected with bart, lyme and babs all. Of course the IDSA say that ticks do not transmit bart, but I think it is just a matter of time before they are proven wrong.
If you are from Minnesota then I would suggest printing out the abstract or even the full journal article (free) and showing it to any docs who have questioned your diagnosis.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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