posted
I just tested positive for Babs (like Tailz!).
Anyway, would love to draw on some the wisdom of more experienced Babs buddies in deciding how to best approach treatment.
I am absolutely TERRIFIED of a Zith/Mepron herx!!! I herxed HARD on the tiniest bit of Artemisia so I have a feeling that this is going to be bad. I did it for 2 weeks and it was the worst kind of hell.
Dr. S warned against starting too slow, apparently is is better to surprise the bugs with a good hard *full* dose Zith/Mepron.
But that seems easy to say when you're not the one who has to live through it.
*****Any advice on how to do dosing?******
Yesterday I took 125mg of Zithromax along with my Bicillin shot. I am doing injections 2x week. I can certainly feel the Zith in my system. It's not terrible but I have a feeling that anything more will put me over the edge.
Is it a good idea to lay off the Bicillin while starting Babs treatment??
Note: I have been doing Lyme tx for 8 weeks now, so I know I still have a ways to go. But happily, I just tested negative for Bart
I really don't want to end up in the hospital (like I did with Lyme)!
I was thinking.... maybe I will slowly work my way up to 500 mg of Zith over the next two weeks or so, then I'll start the Mepron at full dose and surprise the buggers. And I will back off the Bicillin, down to once a week. Sound good?
Is this sneaky enough?
My mom is coming to help me out in 2 weeks, so I thought it would be a good idea to start the Mepron then.
Thank you all in advance for your help!
Posts: 390 | From Oakland, CA | Registered: May 2007
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posted
My LLMD also thinks it's good to start in at a high dose and surprise them ... he told me that for my bart treatment, too.
I actually felt about 10% better when I started the Mepron, then I had my first herx at about 24 days. It was my first herx as I started babs treatment in the beginning, so it was bad, but I saw steady improvement after each herx.
I started in on the full dose of Mepron and Biaxin from the beginning (my insurance didn't approve the zith).
I was on Mepron/Biaxin/Art for 9 months, and am now on 1 Malarone, Lariam, and Art. I've also taken Plaquenil since the third month treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Jellybelly
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posted
I have never tested positive for Babs, but then I have only been tested once and it took my doc 6 tests to get a positive on himself. I am or should I say have been very Babs symptomatic.
I have never done a specific babs treatment and very little abx. I did use about 3 years of heparin and a very tiny dab of mino.
I have been in remission at about 85-90% for a long time. Recently I went back on the heparin because I seem to be flairing a bit.
The herx is NOT extreme with heparin unless you add abx to fast. To me heparin is a far better option since it is something our bodies produce naturally compared to abx, which means anti life and kills far to much good stuff.
Don't get me wrong, because I have used some abx, but if there is another option, why not take it?
Posts: 1251 | From california | Registered: Apr 2005
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tailz
Unregistered
posted
I had asked Dr. B about heparin - I'd rather try that for my babs, too, but he says unless I get a certain clotting test - and I was a phlebotomist and had to do these tests occasionally, but I can't for the life of me remember the name of it! - I can't have heparin.
Gosh - I can't remember what it is called, but you basically put a little cut in someone's arm and then take this paper and blot the blood away, timing how long it takes for the cut to stop bleeding.
Wait! Ivy Bleeding Time!
I'd rather heparin, too, especially since I feel like I have clots in my brain and heart. Is heparin expensive? Is that why they won't let them treat with it?
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I'm on my 3rd week of heparin. I love it!!!!!!
My brain fog cleared up within 10 minutes of the first shot. I thought I was CRAZY but it keeps happening over and over. Now I can tell it's time to do heparin based on how I feel.
My fatigue is better and my pain meds feel like they are working for a change. I'm on double strength or ramped up Oxycontin known as Opana ER.
I pay $10 for a month's supply of heparin plus $8.06 for a month's supply of syringes.
I get a PT & CBC done weekly and my dose is changed. I'm on 9,000 units twice a day. Don't know if this is high or low?
Been planting bulbs in my yard for the past 3 days. It's great to be able to do things I used to love again.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
Would love to hear from those on Mepron/Zith too...
Posts: 390 | From Oakland, CA | Registered: May 2007
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Vermont_Lymie
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Member # 9780
posted
Hi Ellie, I was on one adult dose of malarone/day for over 5 months; it knocked me on my butt starting around week 2 until around week 7 or 8. Seems to be a grace period for the first week or so after starting it, and then, wham!
After 2 months, it got much easier to take, as if the nasty herx or adjustment period was over.
But, other folks have different experiences. Some lymenetters take far more than me -- two or more malarone /day -- and seem to have an easier time with it.
Overall, it was worth it! I think malarone is very effective for babs, and so does my llmd. If you have to take mepron or malarone and find it difficult, my best advice is just to tough it out if possible and stick with it. I am glad that I did, although it was very unpleasant for a while. But my health is improved, so like lymetoo says, 'no way out but through' or something like that.
Posts: 2557 | From home | Registered: Aug 2006
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cootiegirl
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I had positive results with mepron and zith. I have to apologize because I have been sick for so long and been on so many different abx combos thru the years, that I forget what the dosage was. But I'm kind of thinking I was on the combo for a few months - maybe 3 or 4 (mepron is expensive so I know that I didn't refill it that many times).
Babs was one of the first things I was treated for - had lyme and bart as well. One of the things I found particularly striking when I first came here was the number of meds and the high doses that some lyme patients had been prescribed and were taking. I realize that each case has to be treated individually and certainly each doc has his/her approach. I remember discussing this with my doc and his approach is that he preferred one or two meds at a time and at a dose (usually in the hundreds of mgs, not thousands) that is effective in attacking the parasite/bacteria but not making the patient sick. He likened it to placing a nuclear bomb in the body....cost/benefit I guess is the way to look at it.
In any event, mepron worked well. My one lyme teen was on it as well. It is expensive ($700 range for a bottle) but fortunately insurance covered it. cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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tailz
Unregistered
posted
Is heparin a shot? Wow. I thought it was a pill for some reason. Doesn't it come in a pill form, too?
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map1131
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Yes, it's usually a shot. You can have a compound pharmacy make a lozenger(toche) for you. I did that because when it comes to a needle, I'm a big baby.
Later on in LLMD treatment I did do hormone growth with a needle to myself. Were you thinking of the hypocogulation test inference to blood testing?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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merrygirl
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Wow Ellie- I know we have had a lot of the same symptoms especially the fevers!
How is your fever? What lab did you test positive at?
I really think I have babs, but tested neg again.
Sorry to hear about this but glad you can get the treatment you need.
Melissa
Posts: 3905 | From USA | Registered: May 2007
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posted
Merry, I bet you have Babs too! I really do. We have been so similar throughout all of this. My LLMD says Babs is responsible for my high fevers (not Lyme).
I tested positive (twice actually) through Igenex. It's interesting because I only tested positive after treating Lyme for 8 weeks and Bartonella for 8 too.
Only then did I start getting the drenching sweats, pounding heart, overwhelming fatigue. But I have not experienced air hunger.
Oh and yes Merry, I have still been having fevers. Around 100 each day, but while I was taking Artemesia they were up to 103 almost every night. Did not go down until I stopped the herb.
Please keep contributing Babs buddies! I'm SO nervous about starting the MEpron/Zith combo without killing myself. Posts: 390 | From Oakland, CA | Registered: May 2007
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cootiegirl
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posted
Again, while I realize the approach of some docs is to bombard the body with meds to 'surprise' the bugs, not all docs agree with that approach.
The experience I had with mepron/zith and my son's experience were both very good - no herx for me, minimal for my son. We have both fully recovered. We have two different docs but both did doses that were tolerable for our bodies yet effective for killing the babs. And I'm sure you know this, but not everyone herxes and just because you don't, doesn't mean that the med isn't working.
I am thinking that if there is such a high bugger load in the body, that for some patients, a more modest effective dose would do the trick to start killing buggers off. And if that dose continues to be effective, then stay put.....but hey, I'm no doc - I've just been around a few that treat that way and I'm pretty much cured of lyme and the coinfections. So in my case, this approach worked for me - it may not work for someone else....
I certainly would be scared of getting sick on a med as well, but I think that a doc would weigh out the cost/benefit. I don't know if herbal alternatives hit the body differently....I can't tolerate cat's claw for example...makes me sick even at only a couple drops. Who knows? cootiegirl
Posts: 1728 | From New York State | Registered: Oct 2002
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posted
up
Posts: 390 | From Oakland, CA | Registered: May 2007
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tailz
Unregistered
posted
Pam, yes - the Ivy Bleeding Time is a type of clotting test. I have a hunch that had they done one of these on me last summer, I would have clotted within 2 seconds. The blood was clotting in the needle whenever I would get labs drawn, and she's often have to restick me because the blood would stop flowing almost instantly.
This would explain why I could not lay on my left side without feeling like my heart was going to go from 500 beats per minute to zero.
I think I would want the heparin lozenge. I threatened to sue my PCP when he wasn't going to give me an epipen for my allergic food reactions last summer, but once I'd picked up the prescription for it, in all honesty, I don't think I could have injected myself with it.
It felt good though to win at least one power struggle - too bad I had to threaten to sue to get it though. Actually, no - that part felt pretty darn good, too.
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Michelle M
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posted
I tested positive for babesia WA-1.
My doc put me on Mepron goop, 1 spoonful two times a day. Plus Zithromax; I THINK 500mg TWICE a day.
After doing this for 10 days, he then had me add in Artemisinin. 200mg doses, THREE times a day. I.E., 600mg a day total.
And to think, I was just at the point of saying "Hey, this babesia treatment isn't all that bad," when I added in the Artemisinin.
Hah!!!
Whereupon my head exploded, and remained that way for quite a long time. We are talking the mother of all migraines. As in, hold head, pace floor, hold head, rock, consider calling 911, hold head, mutter in strange languages never before heard, consider last will and testament, but hurts too bad to think.
Etc., etc.
Babesia WA-1 is a particularly nasty creature. Although I was CDC positive for lyme as well, I remain convinced that lyme was the lesser of my problems.
Artemisinin adds DRAMATICALLY to the effectiveness of the Mepron/Zith treatment regimen; some study confirms this and please pardon me for not citing it (but I swear I have read it!!) It also adds dramatically to the OUCH factor.
May it go gently on you!!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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luvs2ride
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posted
In June I was diagnosed Babesia WA-1 which I believe came from a tickbite received in May. I can't be sure I didn't have Babs before as I was never tested, but I never had the symptoms before this bite.
I am working with a well-known ILADS LLMD. She started treatment for H.Pylori with ammoxy, biaxin @500 mg daily and prevacid. After 1 mth she had me increase the biaxin to 1000mg which she said would go after the babs. It took me 3 tries over several weeks before I could tolerate that dose. I remain on it to this day.
She has also had me on Plaquenil since June. She began IVs of MTE (herbal substance) for parasites. I just received my first one today and was warned I will probably feel beat up and have headaches in the next couple of days.
She is using these herbal IVs to bring down the parasite load before she begins the Mephron. That way I will not have to be on it so long. She is trying to protect my liver and kidneys. I am so grateful for that.
So far, I am doing very well.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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luvs2ride
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posted
I posted my biaxin doses incorrectly. It was not daily but twice daily for both the 500mg and later the 1000mg.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Rianna
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posted
I was on Mepron and Ketek and then zith/mepron and would never take Mepron again-it sent me nuts, I was on it for 4 months and it took 2 months after stopping it to start to feel mentally better, although it still frightens me how unwell mentally it made me.
Am seeing LLMD again as my babs symptoms have come back - very severly this time, although no way will I ever take mepron again.
Im on Hepain and have been for a year sub cut injections twice daily-does not seem to have helped the babs, although this is my experience I believe many are fine on Mepron - just keep in mind there are alternatives
I will discuss Primaquin or clindamycin/quinine as again now way will I take mepron or atavaquone again.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I agree with Michelle about Artemicin. If your doctor has not given it to you, I'd ask about it. It made all the difference for me.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Michelle M
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posted
quote:Originally posted by luvs2ride: She has also had me on Plaquenil since June. She began IVs of MTE (herbal substance) for parasites. I just received my first one today and was warned I will probably feel beat up and have headaches in the next couple of days.
Luvs
I was on Plaquenil for months before testing positive for WA-1 just as part of lyme treatment, so perhaps it helped to lower my parasite load..? I HAVE read that it has anti-parasitic properties.
I have never heard of an MTE IV. Can you describe it? Does it contain some deriviative of artemisinin? There are powerful herbs which exist to combat parasites! I just have never heard of an IV route. It sounds very interesting. I hope you are feeling OK today.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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luvs2ride
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posted
Plaquenil is an anti-malarial drug which, for reasons no one can explain, also has a positive effect on RA.
I thought I was on the Plaq for my RA, but dr said yesterday that she has me on it for the Babs. Makes sense since Babs has malarial like qualities. BTW, upon physical exam, she was very pleased with the progress of my RA. She barely found any inflammation.
I can't find any information about MTEs to read up on myself. I quizzed the doctor and the nurse pretty hard yesterday and sounded much like a kid asking why...why....but why....? They are so patient.
The best I could understand is that it is herbal and there are diffferent mixes for different things. Yesterday's mix is for parasites and I am to get 5 txs before she moves on to something else.
Today, I feel kind of beat up but nothing too bad. However, I did notice this morning a white coating on my tongue which I have not had before. Makes me think the 3 accidophilus pearls I take daily are not enough now that I am on so many drugs.
I'm reading the Paradophilus thread with a great deal of interest. Also, Theralac which so many here seem to like.
Thanks for the well wishes. Wish I could tell you which herbs I am getting.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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5dana8
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Member # 7935
posted
Hi Ellie
sorry to hear about your babs. It's a tough one to beat.
I was treated several times but didn't notice any improvement till I added the art. It's a hard little herb to handle though~
Might want to talk to your doc about this
I know a few people who hd some results with (sp?) quinnine.
hope you can find some relief soon, babs really stinks
oh, almost forgot, you may want to do a search for groovey2 ...he has been fighting babs for some time now...he posted recently that he's doing really well now.
healing hugs Dana
none of the above is medical advise...just my 2 cents....make sure to talk over everything first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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I have been treating babs sense the beginging of August or so....
It's a nasty one...
I'm on the Zith/Mepron combo- 1 tsp 2x daily (am and pm) and 500mg of zith 2 x per day...
I added zithromax for a week and then the mepron..
I also take 900 mg of omnicef....(don't think this is for babs..can't remember now..)
I also take Art...I muscle test for the dose...my doc likes me to really ramp up the Art dose a few days before ,during, and after the full moon, as the parasites come out and play....(800mg- if I can take it)
I must say, I had the worst herx of my life when I added Mepron in...it was a month straight...it
made me SO SOSO SOSOSOSOSOSOSO SO depressed...did I mention I was depressed??!!?!!!!!!!!!! it really messed with my head... It really pushed me to the point
of stopping the nasty drug- I was scared for my life at times...but then one day my depression cleared...I felt SO much better...I
have noticed a huge improvment in my severity of symptoms...I really can see now that I'm getting better...it's slow...but I'm going up...smile..
everyone handles this combo differently, so I read..some don't herx- some just improve...others get hit really hard...
There is a point when we just have to back off..your body will let you know... it feels different than a herx...to me at least..
I say if you can stand the herx....stay with it- that is if you herx at all..
this combo has done wonders for me..
it'll be nice that your mom will be there to help you...
good luck and I hope this helps you~
if you have any questions or need support when you start, feel free to PM me...
much love~
fawne
-------------------- Energy flows where attention goes~ Posts: 302 | From Kauai | Registered: May 2007
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(However, I think I am more scared about the Mepron now.)
I also tested positive for the WA-1 type (Also known as Babesia Duncani.) It's curious that so many people also have here. I thought B. Microti was more common.
I didn't realize so many people add Art to the Mepron/Zith mix. I was under the impression that you do one or the other, so it's interesting to see people doing it all.
I agree, the Art herx is horrible, so I can't even imagine what it must feel like to add Mepron on top of it.
I am tolerating 500mg of Zith okay right now. (No Mepron yet). It gave me a killer migraine yesterday but today I felt much better.
One more question: Did people continue with their Lyme treatment while attacking Babs? Or is it advisable to take a Lyme vacation?
Posts: 390 | From Oakland, CA | Registered: May 2007
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the doc has me on 500mg Zith every other day, 1 tsp mepron twice a day, and 50 mg Mino every day for Lyme.
i had 3 weeks of doxy back in july (after my initial diagnosis by a sports rehab doctor).
i had been really depressed for a few months and after finishing it the depression lifted.
now after a month of mino and a week of mepron/zith, i can tell the depression is coming back.
i'm kind of sitting scared of what's to come, but i'm glad to be on the right track (i hope).
Posts: 35 | From Washington, dc | Registered: Jul 2007
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
My 21 year old did zith/mepron/omnicef and 300 mg of artemesinin daily for about 7 months. He took a one week break each month from art.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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djf2005
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Member # 11449
posted
i realize the heparin issue was only mentioned briefly in this thread, but can anyone else share their doses?
i am off iv right now but still have a picc AND heparin, and it does seem to help head pressure, etc so i was hoping for some dosing suggestions.
i obviously will be discussing this with my dr.
thanks
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
I'm on the lovely Mepron, art, zithromax combo..Fun times...and I'm still herxing HARD into day 43..stiff neck/fatigue/joint/muscle pain...I spoke with my LLMD and he said to make sure I was taking the following supplements while treating for babesia:
Borage Oil (1 pill) Fish Oil (1 pill) Blueberry extract or Mangosteen to replenish the oxidative stress 1 81 mg tab of baby aspirin a day Magnesium Glycenate (1 pill) A packet of Emergen C
Detox with infrared sauna, if possible....
He said to take a break on the weekends from the art dosage....
Hope you feel better soon...
Posts: 1155 | From Southeast | Registered: Oct 2005
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