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» LymeNet Flash » Questions and Discussion » Medical Questions » How do you know when you're done with babesia treatment?

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Author Topic: How do you know when you're done with babesia treatment?
Hoosiers51
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I'm just confused. I have tested positive for it through Igenex FISH and also had low-positive babesia duncani titers from another lab....

...but I don't have very many of the symptoms, unless I provoke it with artemisinin. Artemisinin will bring out night sweats sometimes. But not always.

It seems like Mepron is not really "the answer" for me. It never helps me (only makes me slowly worse from depleting cellular energy), like it should be eventually helping someone with babesia if it was ever going to help.

I'm not one of those "Mepron success stories."

It is very clear that I still have active Lyme, because I herx like heck from Lyme treatment. I have also herxed a lot from bartonella treatment, and improved some from it too.

However, I don't herx much, if at all, on babesia treatment, except for artemisinin. And I don't really improve on it either, even after months go by.

So is it time to just admit that my lingering symptoms (mostly horrible fatigue and requiring lots of sleep) are not due to babesia?

I mean, maybe my immune system isn't handling it the greatest, since I do test a little positive for it.....but it just seems like my babs treatment is a failure, whereas treating Lyme and bart seem to be getting me somewhere.

When do I give up treating babs? The babs meds are making me so ill. How do you even know the babs meds are working? How do you know when to stop them? If you aren't responding to the treatment at all (even though bloodwork and art responses say you have it), why take the meds?

Thanks for any insight. Just feeling lost, and feeling like I want to just stop the babesia meds, and see where Lyme treatment takes me. I feel like these toxic babesia meds are holding me back from improving from my Lyme treatment.

What to do?

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Lauralyme
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Maybe mepron with biaxin is a better combo?

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/85472

--------------------
Fall down seven times, get up eight
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JamesNYC
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Wow Hoosiers,

I'm sorry you're feeling so badly. But I would advise you stay with the babs meds. Don't give up, babs is a nasty bug too.

I'll try to give you some words of wisdom/encouragement, but it's 3:30am so I may not be very articulate. (I'll probably repeat myself from other threads [Smile] )

I just had an appt with my LLMD today and brought up babs. (I am going to post about it another day).

He says, he doesn't feel that someone is "cured" from either babs or lyme unless they've been symptom free for at least 3 months. That can make for a very lengthy tx.

If the tx is working, then there should be improvement by 3 months when the RBCs are replaced after the end of their lifespan. But, the babs can come back if it hasn't been completely cleared from your body. I would guess that there would be some time period between the 3rd month and relapse of babs where one would feel pretty good.

I don't think herxing is necessarily indicative of success with babs. I think the treatment mostly inhibits the multiplying of the babs rather than outright killing it. The babs is cleared as the RBCs are replaced. Therefore little herxing without dead bacteria. Artemisinin kills lyme too.

You ARE responding to the tx as verified by the bloodwork. The fatigue and endless sleep are also symptoms of lyme. So you certainly have a combination of fatigue symptoms from all 3 bacteria making you feel horrible. Maybe it's NOT specifically caused by babs and that's why you don't feel a dramatic improvement.

While my babs fatigues me, I find it very distinguishable from the lyme fatigue. For me, with lyme, I want to sleep a lot. With babs, I have chronic insomnia (note that I'm not sleeping at this hour). I guess lyme makes me sleepy fatigued and babs makes me lethargic fatigued. (But again, that's me).

Also, don't forget: those 3 bacteria work together to inhibit the immune system. It's hard to clear one unless you clear all 3. The babs may be persisting because of the lyme and bart.

I do not believe that the babs tx holds you back from improving from the lyme tx. I'm not sure how you mean that.

I'm don't know what to advise about the mepron. What you describe is puzzling. Mepron makes you feel ill? How do you know it's the Mepron?

Maybe try Malarone? These are the best drugs out there. But obviously they're no good for you if you can't tolerate them. What is your dosage for Mepron? Maybe it needs to be increased. I got pretty good results on 10ml a day. But the babs came back. Now I'm on 20ml a day. Or maybe you need to take a break for a month or so, then start up again.

Today, my LLMD also prescribed Lariam to add to my arsenal of abx. (I'm up to 5 now!!! Whoopee). He also increased my artemisinin to 500mg from 200mg per day.

Babs is far worse for me than my lyme, so I'm all about getting rid of it. And I didn't have enough in me for a positive FISH test!

Babs does not belong in your system. It is moving into your RBCs. It is helping to make you feel lousy. Man, you gotta get rid of it if you want a chance at good health again. Hey it's a tiny little microbe, you're a big multi-celled behemoth, with a brain, you gotta believe you can kick babs butt!

I think you should kill 'em all, and let your spleen sort them out!

Hang in there Hoosiers. Don't give up!

James

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catskillmamala
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I know what you mean about babs treatment, it seems so nebulous. I did 5 months of mepron after a postiive babs FISH test. And my daughter did 22 months after her test and clinical dx, but she had more symptoms than I. I had occaisional night sweats which worsened on mepron.

I just wanted to let you know that I feel I've had success treating babs with rife. And the nice thing is that there are only 3 frequencies for babesia which correspond to the 3 strains in this country. They are 76, 570 and 1584.

Lyme and other coinfections are harder to identify which frequencies are effective. I also understand that rife can be really annoying launching out into with new technology and science.

I actually HATE doing it myself, because I am not over the hoaxy factor, but I have to say I am working, parenting and driving- which I was not 1 year ago. And 3 separate MDs have told me off the record it works.

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lou
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The problem I have with rife is that its proponents claim it cures everything. This seems unlikely. Also, since our nervous system uses electrical impulses, how does anyone know if the effects are on the microbes or on the human? And we have commensals in our gut that are necessary. The idea that frequencies can be assigned just boggles my mind. But if it helps people, who am I to object on scientific grounds?

My own babesia experience: did not produce symptoms until two years after the bite, at the same time as the lyme became really active. Treated for 5 months with low dose of malarone (250 mg per day). This did not kick it. Never had major night sweats, just occasional. My babs symptoms were headaches and weight loss. After three months of mepron, zithromax/clindamycin, with some art thrown in toward the end, it seemed to disappear and I regained the weight, headaches gone.

During the mepron treatment, I had to stop for a while because of liver trouble.

Can't swear it is gone, but this was several years ago and the symptoms that seemed to be related to babs are still gone. Unfortunately, lyme isn't and whatever else I have.

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lymers
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Hi Hoosiers51,

I'm sorry you're struggling so much with your babesia treatment.

Mepron isn't the only treatment out there for babs.

Maybe you could try something else?

I know you've been taking artimisinin. The fact that it's causing you to have night sweats tells me that there is babesia in your system to kill.

My son has been on Mepron now for several months and it brought out lots of night sweats for him that he only had occassionally before treatment.

I wonder if the Mepron is causing you to be deficient in CoQ10.

It can do this in some people.

Maybe a break from Mepron and then take CoQ10 before you go back on Mepron again?

Also, the other babs treatments that I know of are Lariam, Malarone, bactrim and an herbal supplement called Enula.

Have you tried any of these?

Mepron with artimisinin helped to clear many of my babs symptoms, but they did not fully clear until I went on bactrim and Enula.

Bactrim is nice because it treats babs, lyme and bartonella all at the same time.

Lymers

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CherylSue
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Hoosiers,

I spoke with the gal from the Michigan Lyme Assn. They are very supportive there. She told me 50% respond to mepron and another 50% respond to malarone. If one doesn't do the trick, try the other one. It's dependent on the type of babs you have, I think.

I would stop the mepron and concentrate on the bart and lyme. My LLMD in Mo rotates abx to hit the different bugs. Go with what works.

IMO,
CherylSue

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MorningSong
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Hoosiers51~

Im experiencing the same as you. Tested very low positive for Babesia duncani. Did not have any reaction to Mepron. On Artemisinin only symptom I have is a few crawling sensations in legs. No herxs/die off reactions, no fevers or night sweats, etc.

I have pondered if I really have it. Thanks for this thread. I can relate.

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Hoosiers51
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Thank you for the very thoughtful replies.

James, it makes a lot of sense what you said about babesia treatment not always causing a herx.

I did Mepron for 3 months the first time, then 4 months, and 4 months again, the third time. I have noticed that there is a small group of people that do really horribly on Mepron, and it seems to be either because they don't have enough CoQ10 in their bodies, etc...something along those lines with mitochondrial energy.

I definitely seem to be one of those people, because I seem to do so-so on it at first, but by the third or fourth month, I'm starting to get in such bad shape that I need to stop.

My current LLMD thinks Lyme is my main problem, and that the babs might be able to be handled for me with just herbs, but then when I was having babesia symptoms, the PA put me on Malarone.

On Malarone I seem to do better. I've been on it for awhile now I guess. But like Mepron, I start to slowly get more fatigued on it, just maybe on a smaller scale.

It definitely seems to be a side effect, and not a herx. And it was definitely the Mepron, as opposed to something else, since I have taken it so many different times.

I would like to look more into the herbal options as well.

Sorry, I'm really tired right now, so not doing a very good job addressing the things everyone brought up....just wanted to respond and fill in a little bit more about what's been going on.

But yes, overall it seems that a lot of people at 4 months have at least some indication that the Mepron is doing something positive, and for me, it only was looking bleaker. That's why my LLMD at the time pulled the plug on it.

Then later on was when I heard about the CoQ10 issues causing some people to feel super horrible on it.

I am considering Quinine/Clindamycin as an option too.

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Dekrator48
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I tested negative for babesia, but am treating for it.

My joints are more painful/sore since increasing to the full dose.

Anyone else had this symptom increase with Mepron?

I get some hot flashes at night. They are hard to call sweats....I sweat a little, but certainly not drenching.

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The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Hoosiers51
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ps--while I do seem to do better on Malarone (4 pills a day, with Zithromax too) than Mepron, and maybe it is helping a little, it isn't really helping my fatigue very much, so that is why I'm speculating that babesia is probably not a big problem for me.

Whoever brought up the different types of fatigue (I think it was James)...that is very interesting. Because my fatigue IS more of a very sleepy fatigue (which could be Lyme).

Though I do have the thing where I feel most alert later at night, and tend to stay up very very late, even when I try to reset my internal clock.


I have had some classic babs symptoms in the past, like the back of the head headache, poor balance, etc...but those are getting better now. And the sweating is getting better too (I used to sweat profusely even during the day, which might have been babs). Also, I would get the thing where food doesn't look appealing, even though I'm hungry.

I think there is still a little babs left, but I'm not sure continued Malarone or Mepron will necessarily target it. But right now my plan is to stay on this 4 Malarone per day. I'm also on Alinia, and it's making me super tired too. Yikes!

Thanks to anyone who is keeping up with my babbling. I am getting a lot out of these replies, just a little too incoherent to address all of them right now. So thank you!

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JamesNYC
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Hang in there Hoosiers. You aren't babbling.

And, you mention in your last post that your sx have gotten BETTER!! DON'T FORGET THAT!

Actually, you are bringing up some good questions about which sx are babs or lyme.

The feeling of becoming more alert at night I've heard is a lyme symptom. I've had the same sx. My brother also had it.

That mostly went away for me since tx. I thought it was psychological, but now I think otherwise.

I don't *think* I've had a bad reaction to Mepron. My sx go up and down so randomly, how would I know? Actually, that's not entirely true. I did not feel better when I finished my first 6 months of mep.

My babs is more a physical fatigue. I also think it causes much of my depression.

My thinking problems, memory problems, need for sleep, etc I attribute to lyme. I had them BEFORE I got babs. However, babs may make the lyme sx worse.

Here's an important question (probably good for a new thread) what kind of food did you take with the Mepron? That may have to something to do with how it has worked for you.

James

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Hoosiers51
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Interesting that you bring up the food issue. Actually, I was always very very cautious about exactly what I would eat with each dose. That is why my parents were always like, "you are definitely doing this right, yet it's still not working."

It has been written that fat soluble vitamins/supplements like Vitamin E, CoQ10, Alpha Lipoic Acid, etc will compromise the absorption of Mepron. Well I took that to the extreme--I not only avoided supplements with those things, but I also didn't eat foods rich in Vitamin E, like avocadoes or nuts, with Mepron.

But I did make sure I got at least 23 g of fat with each dose---usually in the form of cheese, a tablespoon of olive oil, butter on bread, whole milk, etc. There were sometimes carbs involved, sometimes not.

I never did more than 1 tsp X 2 daily. But because of how fatigued it made me (that is the CoQ10 issue probably) and gave me such horrible dark under eye circles, etc....I never went above that dose. I usually took it at least with Zithromax, sometimes Amoxicillin too. Sometimes I had artemisinin with it. One time I did Plaquenil for 6 weeks with it too.

One of my LLMD's used a test called C1Q immune complexes to gauge level of infection, and on Malarone (not Mepron), this number went down. So I tend to think that maybe the Malarone was affecting my babesia more than the Mepron, even though my symptoms aren't tons better on it.

Since I've done herbs for babesia too, it is hard to know overall what exactly is responsible for some of the babesia symptoms getting better with time, but I would think the Mepron and Malarone have helped that. I guess my point is that my level of functioning has not changed while on these drugs....so sometimes I wonder, why continue them? My worst symptom has always been the "sleepy" type fatigue, and like I said, that has not improved like it should be.

However, I am optimistic Lyme treatment will get me there. And perhaps some more Bart treatment, though my brain is also much improved, in addition to my babesia symptoms improving.

I tested positive for babesia duncani, and was probably infected with it either in the Midwest, or Pennsylvania (which does apparently have a large pocket of duncani). So sometimes I wonder if I'm dealing with something that I can't really compare to those with babesia microti.

Or maybe I do have microti, and the titers just cross-reacted. I have heard that is possible at some labs.

James, by physical fatigue, do you mean like you try to walk up a flight of stairs, but your body just can't go any further? I have had that kind, but only off and on.

I was thinking that was a side effect of Plaquenil for me, but now that I think about it more, maybe it really was a babs flare.

Anyways, thanks for listening!

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riverpatrol
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Hi Hoosiers51,

Maybe I missed this in another post, but how long have you been treating for Babs? I find much of the information here interesting and helpful since I am also treating for Babs now.

I tested negative twice, Igenix and Fry. Then re-tested in April at Igenix: positive FISH and, like you low-positive but for babesia microti. I started tx late May with Alinia only for Babs, I am also on IV rocephin, IV Zith, and palquenil. I herxed horribly right after the first dose of Alinia. Maybe it's the difference between microti and duncani? Also like you, I didn't have real significant symptoms prior to treatment: loss of balance, occasional night sweats. Early in my illness I had significant chills and sweats at various times.

The first couple of months of babesia tx were total hell. I regressed considerably, and experienced symptoms I never had before: major migraine headaches that would last weeks, fever, chills, sweats, severe (sleepy) fatigue, neuralgia, severe joint inflammation and pain, pain, pain, pain, anxiety, insomnia, etc. I was extremely upset because I had progressed pretty well with my lyme treatment over the last 2 years, and this set me back to feeling almost as bad as I did 2 years ago.

I have progressively gotten better in the last couple of months. I guess my improvement is easier to notice because of the severity of my sx. But, I also can see improvement of sx I had prior to babs tx: I have more energy - I don't HAVE to take that afternoon nap anymore; my head is clearer, my short-term memory is getting better.

And as JamesNYC mentioned, I also experienced the loss of appetite thing. I would go to the grocery store and wander around for 1/2 an hour before finally forcing myself to just start putting food in my basket; nothing looked appealing.

Also as JamesNYC mentioned, "I would guess that there would be some time period between the 3rd month and relapse of babs where one would feel pretty good." - I did EXACTLY that. Last weekend I was feeing REALLY good. I was thinking 'Hey, maybe I've finally kicked this thing and can finally move on to getting totally better'. Then, on Tuesday I crashed big time. I herxed harder than I have herxed in a couple of months: fever, chills, sweats, pain, pain, pain, sore throat (new sx), etc. I came out of it by Wednesday, but I don't feel as good right now as I did last weekend.

Ultimately, I don't have an answer to your question, and I was wondering the same thing myself. But with my experience I think my body will let me know. I've got to ride this flare out, and when I consistently feel as good as I did last weekend I'll know the end of the road is near.

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Hoosiers51
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riverpatrol,

So you're pretty sure it was the Alinia producing such significant herxing, as opposed to the Lyme drugs you're taking? If so, that's quite impressive. I hadn't heard many stories on here of Alinia doing so much for people.

I've treated babesia a few times, but this time, I'm about 3 months in with the 4 Malarone per day. I am also on Alinia, and I'm almost at the 2 month mark with that one. I noticed when I first started Alinia, I got a few petechiae (which is supposed to be a babesia symptom).

Other than that, Alinia has made me really really tired. Since I didn't notice many herx-ish symptoms on it, I wondered to myself if it's even affecting the babesia. But perhaps it is. Hard to know.

I do seem slightly better. But it's pretty slight. Hard to know if it is from Lyme getting better from the Bicillin, as opposed to babesia improving.

My current LLMD did write in his notes that I had shown "poor response" to babesia treatments in the past with another LLMD (based on the reactions I described to him).

I have experienced "herxes" with Lyme and Bart, but just not too many impressive ones from babs treatment. But maybe I'm one of those people that won't be showing much in the way of babs herxes.

Anyways, you said 3 months in was when you started noticing improvement from the Alinia? Well that's good to know....I will at least stick it out another month. Who knows, maybe at that point I WILL start noticing more solid improvements.

If this babs treatment is working, it's just slowly chipping away at the load. (I would question if I even have it, but like I said, I tested positive twice...second time after 4 months Mepron/Zith, w/o stopping the meds for the test)

I'm also on Bactrim too right now. But I'd like to stop that soon because I was only on it to punch out a little Bart.

Okay, this is long enough! Thanks for any additional thoughts.

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JamesNYC
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Hoosiers,

Did you catch the topic I posted on Sat night, before it got deleted in an explosion of controversy?

It was pretty germane to your issue.

Also your PM box is full.

James

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riverpatrol
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Hi Hoosiers51,

Yes, I'm pretty positive that it was the Alinia that caused the significant reacton. The only lyme rx that changed at that time was going from biaxin to IV Zith. And this herx was different from any lyme herx I had before. One of the symptoms was being really really tired, but I blamed that more on the herx than on the Alinia - it wasn't constant.

Interesting that you mention the petechiae! I have been getting patches of those on the back of my hands and forearms for many months. The frequency and size/severity has decreased dramatically since treating for babesia. I had a patch about 3 weeks ago, so if that truly is a babesia indicator, I'm not out of the woods yet.

I've read that duncani is harder to get rid of than microti. Maybe it will take a bit longer for you. As I've learned while on this path, you've got to push through and stick it out. There is no rushing these bugs.

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blaze
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Could someone explain to me the differences between babesia microti and duncani? Are the treatments different? Is one more severe?
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Hoosiers51
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James,

I cleaned out my PM box, thanks.

riverpatrol,

Thanks for responding!

blaze,

Not sure really how different they are, but some doctors say duncani is harder to get rid of. Maybe that's just because the right drug for it hasn't been found yet?

Some of us seem to do better on different things, in terms of Mepron vs. Malarone vs. Alinia vs. artemisinin, etc.

Also, the tests might cross-react, so it could be hard to know which one you have, if you test positive.

I think a lot of it varies person-to-person. I'm not sure there are really any answers to your questions right now. Or at least, none that I know of.

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lightparfait
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Petechiae?

Does this clear up and go away when babesia is gone?

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Hoosiers51
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I dunno, lightparfait. For some people, it isn't babesia-related. So I am not sure if mine are or not. My mom has them too, and she is pretty healthy. I think viruses can cause them too.

But some LLMD's will attribute an increase in petechiae to babesia....that's all I really know.

I did notice I had some show up after starting Alinia.

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JamesNYC
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Hoosiers,

I may have some pertinent info for you on this topic soon. I'll let you know.

James

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Hoosiers51
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Okay, thanks James!

I have been feeling VERY slightly better lately overall. I have three things that are new within last couple months: Bicillin for Lyme, Bactrim for bartonella, and Alinia for babesia.

So I'm thinking one or a combo of those things is doing something good overall. It could be the Bicillin, but I'm hoping maybe I will be able to attribute some of it to Alinia. Because that would mean there may be something (finally) whittling away the babs, in a noticable way.

I just overall feel a tiny bit more normal. We'll see if it continues to go upwards.

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riverpatrol
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quote:
Originally posted by Hoosiers51:
I just overall feel a tiny bit more normal. We'll see if it continues to go upwards.

Well good! That's a better note than you started the thread with. [woohoo]
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Hoosiers51
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Yeah, exactly. Thanks! [Smile] It's not often I see progress, so the past few days have been kind of surprising to me.

Maybe the Alinia just needed more time. Or, maybe this progress is unrelated to babs. But whichever....it's progress. So yeah...woo hoo.

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