nefferdun
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Member # 20157
posted
I have my extreme ups and downs that defy reason, at least for me. Lately I have been headed down again and it worries me that the babesia may be becoming resistant to the Mepron. Has this happened to anyone?
I have been treating with mepron/zithro since late november 2010. My fatigue improved, depression lifted, my dizziness went away, headaches gone and my mind was much clearer. The hot flashes and lack of stamina reminded me I am still sick.
Now I am extremely tired again with more frequent hot flashes and sweating. Even my mind seems to be in a stupor. I feel like I could collapse. Almost back to zero in such a short amount of time. Why?
I am going to add in Malarone as soon as the pharmacy gets it. I do not understand babesia. I don't understand the cycles or know what is happening.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I'm with ya. I am only on A-Bab right now for babesia and I don't understand it's cycle at all.
I read that there are 7 day and 14 day cycles.
I sure don't seem to find a pattern. Will be trying to track symptoms better. Makes it hard to make any sense out of your notes when your mind is not functioning where it ought to be or used to be!
I did a search for Babesia cycle and found some info on here on the 7-14 day cycles.
Jamers
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posted
I don't understand it either. I feel like crap all the time, not every 7 days or so. My first 3 weeks on Mepron and I felt a lot better. Better stamina, no sweats, then after that all down hill. But Mepron isn't even supposed to be therapeutic until week 3 as it builds in your system so how could I feel better? I HATE Babesia
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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jackie51
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I thought once you knock down one infection, another rears its ugly head.
Maybe it's not babesia. Just a thought.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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jackie51
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posted
No frickin' idea how to keep this straight. Treat one, and then see what to treat next.
Nef--your body might be readjusting. I know from some of the things I've done in the last month or so, I've needed a week to recover. I don't get as much sleep as when my body forced me, so that may play a role if you're not well rested.
The first go round when I started to recover, I overdid it. I felt like I had to get as much done as possible, because I didn't know when I was going to crash again. I was always behind too. This is very hard on the psyche which in of itself can be exhausting.
And, today I ate pizza. There I said it. Stupid a** me. Now my head feels swollen and I'm grumpy. Two steps forward, one step back.
What a journey.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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nefferdun
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posted
Believe it or not I felt better around 4PM. Before that, I was completely zonked. I went to the store in the morning and I was worried I might actually pass out. So I came home and just layed on the couch for hours.
I don't think it is another infection except I have been having burning in my shins again. Very confusing.
I can't figure out a 7 day cycle or any cycle. Maybe I overdo things when I feel well. But I will continue to do it. Once in a while I need to feel like I have a life.
This afternoon I was able to think about how to put something together without losing my train of thought and getting confused. That is good.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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posted
I resumed Mepron in February. During May, I felt I had plateaued, so I increased my dose from 1 tsp 2x/day to 1.5 tsp 2x/day. Back to herxville I went.
I think increasing Mepron or adding Malarone is a good idea. Or just change meds entirely for a couple months. Clinda/Quinine maybe? Coartem?
posted
I have been on mepron since September 2010 and still have drenching sweats and head pressure. I think I still have a long way to go with treating babesia. I have heard of people being on it for 3 years before they get rid of all the babesia.
Dr. S in his book babesia 2009: update says that you have to use both malarone and mepron while on artemisnin at the highest dose possible - I know that sounds scary, but maybe that is the only way to truly get rid of babesia.
lululymemom
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Member # 26405
posted
My daughter also plateued on Mepron and we were just about to add in Bactrim when her enzymes went through the roof. So she stopped everything.
She is feeling much better and only taking crypto and wormwood for babs.. I should also say that she takes other supplements one being Curcumin Xanthorhizza.. which supports the immune system and also hits babs. It's one of the ingredients in A-bab.. It was recommended to us by Buhner and he is writing a revised book on treating babs with new herbs.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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nefferdun
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posted
BoxerMom, maybe that is what happened - upping my dose and taking other meds just gave me more herxing. I was not sure if that would happen or if I should just begin to feel better, not worse.
betty, I could not afford to treat this for three years - at least not with Mepron/malarone! That worries me. That is why I want to hit it as hard as I can.
lululy, I tried adding Bactrim and I could not sleep. Then I tried plaquenil and had the huge increase in symptoms. Maybe I am just not dealing with the herxing. I hope my liver/kidneys can hold out. My kidney function was a little off last test result.
I hope your daughter continues to do well. I will have to look for buhner's new book. I hear a lot about abab and other herbs, some of which I have, but the only thing I am consistently taking now is artesunate.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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I know this is by the worm et al., but I'm inclined to believe it, as I don't see anyway how, if it were a lie, telling it would be able to help them. Actually, anything like this is worth archiving, as the best evidence we have against the IDSA on Lyme comes from their pre-1994 papers.
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nefferdun
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posted
Thanks onbam. I believe it. Microti is not supposed to be as bad as duncani. It says there is resistance in immunocompromised people but Bb makes all of us immunocompromised. That is the problem.
I know that zithro is given with mepron to help prevent resistance to the Mepron. When a person is still sick 4 months into treatment, when all the red blood cells have been replaced, you have to wonder why.
Is the babesia hiding out somewhere else in the body? Is there just resistance? What does a person do about it? Is it best to hit it lightly with the hope of gradually, over a very long period of time, getting better. Or is it better to hit it with everything all at once, or frequently change protocols, so it can't build resistance.
They say we can't get into remission treating ourselves but I have to. I can't get the help I need from the LLMDs that are too timid or too apathetic to address my sickness with the same urgency they would have if I were a person in their family.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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BoxerMom
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posted
It's not like every time you take a dose of antibiotics, every vulnerable organism dies. A small percentage of them die.
And I don't know if they still replicate while we are on antiprotozoans. Even if only a small percentage are reproducing, that would be a big deal, as each "parent" makes many "offspring." Then the offspring cruise around looking for fresh RBCs to infect, so they can become parents. Sheesh!
And, there's a nursery in the liver. New recruits come from there, as well. This army is well-fortified.
Yes, they do hide. Spleen. Liver. GI tract. They line up along small capillary walls (like in our brains and extremities). I believe Burrascano says bone marrow. (Really?!)
I have B.microti, and it took one year of Mepron combos to hit a symptom-free remission. Then I relapsed 18 months later. So it can take a lot longer than 4 months to get this under control.
If you are still herxing, you are not resistant. Just keep plugging away. And plan to do the Primiquine/Chloroquinine at the end. That gets the hypnozooites in the nursery.
Then plan to keep treating with herbs. A-Bab. Whatever.
Do NOT relapse once you make it to remission. By the time you have symptoms, you are chock full of Babs again. Not cool.
I know. This is a drag. Just keep going. Don't give them a chance to get the upper hand again.
Pretty sure that the maximum number of offspring of each babesia is 4 -- if you study the photos the tetrad form is actually 4 new baby babesia. It is my understanding that each red blood cell can have from 1 to 4 offspring.
But in reality a person can be symptomatic if even less than 1 % of their red blood cells are infected.
Nefferdun -- I can totally relate to having problems finding docs who treat babs aggressively. Now that we have finally figured out to some extent what is going on with hubby I am debating on whether to back off some on treatment or just keep on with the aggressive approach.
Hubby apparently has bacteremia from serratia marcescens and that was causing some of the fevers. But the night sweats and hemolytic anemia are obviously babs herx symptoms.
So now I am researching what herbs to add to treat the serratia because the 10 days of antibiotics did not work the first time (hospitalization #2) and we are not too optimistic that they will work this time either (hospitalization #4).
We are both pretty convinced at this point that the serratia may have been hiding out in his red blood cells for who knows how long and that finally getting rid of his bart allowed his immune system to finally recognize the bacteria especially during babesia die off reactions.
Plus we upped Steve's lumbrokinase. He used to take 3 or 4 one at a time daily. Now I have him taking 2 pills 3 times daily. I do think 2 at a time is more effective for hypercoagulation or biofilm -- whichever it is actually working on.
If you are not taking something for hypercoagulation or biofilm adding that to your treatments might make the babesia treatment more effective.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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BoxerMom
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posted
My relapse began with a single episode of air hunger on Labor Day weekend last year. I took that single symptom seriously and got right back on Mepron. No more symptoms, so I did 2 months and stopped. I thought I had it under control. By February, I was a wreck.
Dr. S in Florida writes about the 1% of RBC infected = symptoms theory. I would buy that. I'm sure I had a much smaller Babs load last fall, and it would have paid off to keep treating.
My point it that once you have symptoms again, you're likely going to require extended treatment. Try not to get to that point.
Bea - If you come back to this thread, I have a question. Has Steve ever just taken aspirin for hypercoagulation? I'm thinking of going that route, because I'm so lame about taking enzymes. Plus, cheaper is better these days. What do you think?
BoxerMom
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posted
Bea, I'm a Zombie today. I should have said congrats on figuring out the serratia marcescens. And, what a bummer. Antibiotic resistance.
There are lots of herbs that kill the gram negative rods. The constituent berberine is found in many Chinese herbs. Also Goldenseal. It's used for GI infections and wound infections. Also immune support. That would be a place to start.
Let me get back to you tomorrow with more herbal options. I'm fried today.
nefferdun
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Member # 20157
posted
The internet is up and down. My last post just got wiped out. So will try again.
I have to remember what you guys tell me. Some very valuable information. I was planning to use primaquine/chloraquine but could not remember why. I need to make a note page for myself.
Lumbrokinase is another thing to remind myself to re-order. Dr. S in CA told me not to bother with any supplements - not even magnesium. It is funny how one "expert" can sway your opinion about what is important. I have not had good luck with the LLMDs.
Fyrecracker, I do have burning in my shins. I don't know why. I thought it was bart.
I am in a lot of brain fog today. I rode my horse and it exhausted me. As I was sitting here trying to recover some strength I had a horrible cramp in the back of my thigh that felt like it would rip the tendons off my knee. I have not had one of those in a very long time.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Aspirin would not work the same as lumbrokinase. Wobenzyme might be a cheaper alternative. Actually hubby takes both plus papain enzymes as well.
Aspirin only thins the blood -- it does not dissolve fibrinogen.
I had Steve increase his malarone back to 4 per day from 3 per day yesterday and the low grade fevers have returned -- hoping it is the malarone and not the serratia.
Berberine is not one of the herbs that seems effective for serratia from my research. The herb coptis is supposed to be of benefit but I think it is the combo of ingredients in the herb or maybe it just boosts the immune system.
The hospital did antibiotic sensitivity on the serratia and supposedly cipro or levaquin work but the fevers came back within a day or two of stopping last time and also the WBC went back up. We tried Factive and that didn't seem to work at all even though it is in the same class. Hubby was given some IV zosyn and also one dose of IV gentamycin in the hospital this last time.
Hubby has been doing 10 days cycles of quinine and also 10 day cycles of meds for serratia and at first we thought it was just going back on the quinine that was causing the fevers. But finally we realized that stopping the quinine did not stop the fevers so it was the 10 day cycle of serratia meds that was mostly controlling the fevers.
Now if the meds and/or herbs will just work maybe we can eliminate one more infection.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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lymewreck36
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posted
Hi folks. There are many good points made in this thread. I, myself, have been in lyme treatment for 10 years now. My babs treatment kept the symptoms at bay for many years, with it always returning if I dropped my meds for a day or two, but well in check as long as I was on my med.
Then, it gadually ocurred to me that my babs symptoms had crept up on me, and long story short, I put together that around the time I switched my zith to biaxin, I started to decline.
The point, in about 20 percent of people, switching away from zith and going with biaxin will allow the babs infection to adapt. AFter that, the use of mepron is not affective because the babs adapted without the zith on board.
Now I am in year 10 of treatment. My organs are just exhausted. Blook in the urnine a week ago with total loss of apetite, liver/kidney pain, blood in the urine and proteins....
I'm thinking I am really stuck this time. We'll see what all the blood work tells us tomorrow at doc appointment. I"m still trying to fight hard.
Keep it up you guys. You are all very informed and asking the right questions and
Getting sleepy. Almost midnight here in Switzerland
Mary
Posts: 1032 | From North Carolina | Registered: Aug 2003
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