I just got a call. Can you believe it? I see Dr. B on December 4th, and they told me they wouldn't make me wait too long. If I have to, I'll sit in the parking lot and make them come get me.
I need to get artemisinin though. Is there a brand that is hypoallergenic?
Also, didn't someone tell me minocycline kills babesia, too? I have some of that left, but I was saving it since I was giving up - plus, it turned my teeth dark. My insurance denied malarone - do you think a positive babs will change that?
I still can't believe it. Thanks!
Posted by Lymetoo (Member # 743) on :
I don't think mino is a big factor in treating babesia.
Most use mepron/zith, clindamycin/quinine, malarone/zith, biaxin/plaquenil, artemisinin/zith....hmmm...what else?
Your insurance company MAY change their minds....who knows? Most make arbitrary decisions anyway....that often make NO SENSE except to their pocketbooks!
Posted by tailz (Member # 10014) on :
I just HOPE they change their minds.
I can't believe I am HAPPY to have been told I have an infectious disease! lol I about died!
I wasn't even going to go back to any doctor - I truly had given up. They even had trouble reaching me because I unplugged my answering machine this week due to my electrical sensitivities. He had sent me some negative results, and I had forgotten that he had tested me for babs again.
I hope the positive result helps me get the meds I need though. I was told he uses malarone and art though. I know minocycline was killing something, too, though. I forget who here had told me mino kills babs?
Thank you though!
If anybody knows a hypoallergenic brand of art, please let me know. Thanks! Yay! I can't believe I'm finally positive!
Posted by tailz (Member # 10014) on :
Allergy Research Group has an ART product there.
Posted by Geneal (Member # 10375) on :
Dear Tailz,
So it probably was babesia and not malaria, right?
So glad you have a diagnosis.
Just got to get the insurance on board with it.
Hang in there.
Hugs,
Geneal
Posted by Jellybelly (Member # 7142) on :
It is believed and one study shows that heparin stops Babesia. Here is a thread that discusses this: Heparin/Babesia connection Posted by AliG (Member # 9734) on :
My ins wouldn't cover Malarone, but did cover Mepron.
Mepron(brand) is Atovaquone. Malarone(brand) is Atovoquone and Proguanil. The Proguanil, I believe potentiates the Atovoquone, so less atovoquone is needed.
Congratulations! I hope you can finally get well. Maybe it will help lessen your EMF sensitivities. I know Txing Babs lessened a lot of different sensitivities for me.
Ali
Posted by Ellie K (Member # 12056) on :
Congrats! It sure sounds warped, but I rejoiced at my recent positive babs test too...
It feels like an explanation for why I have not been improving on my Lyme protocal.
Posted by AliG (Member # 9734) on :
I'm just curious.
To those who recently tested positive- Did you notice if your Babs symptoms seemed to be flaring more than previously, when you tested positive?
Posted by Ellie K (Member # 12056) on :
Yes, definitely, Ali...
Posted by cantgiveupyet (Member # 8165) on :
wow, congrats tailz!!!! Im actually happy for you!
What lab did you test positive with?
Posted by tailz (Member # 10014) on :
My babs was positive through IGeneX, but it had been negative last year with IGeneX, as well as every time I'd been tested through Quest/Lab Corps and MDL over the last year. I didn't really notice a change in symptoms though with this recent positive - I just remained ill and tense and was almost resolving to just feel perpetually miserable, stressed out, and unfocused.
I will not touch the malaria subject though right now - if I am to turn positive for one bug a year, with my luck, malaria could be next year's bug to turn positive! lol (I may not even be joking!)
I'm not convinced that babs is all I have - especially since my tongue and teeth freaked out on the minocycline this past spring. I would think that all the Ceftin I'd taken would have killed enough Lyme off to have prevented that. The mino must have been killing something other than Lyme. Which bugs does mino get besides Lyme? I think I probably should continue with that.
I know when I was Rifing 2950 helped some, and that kills h-pylori, mycoplasma, and EBV. I'm not sure what others it kills, but those were the ones I found searching quickly.
Ali, isn't mepron a liquid though? I'm so afraid to take a liquid with all my food reactions. I guess I have to take what I can get though.
Thanks for the links to the thread and the artemisinin link, too! I really would like to try heparin. I feel like I have clots in my head - I think this is why my ears constantly 'swoosh' like I'm under water.
I just hope I make it to December. Please say some prayers? I even asked the receptionist if she was SURE she had the right patient. I seriously must have an angel - only my angel usually waits until I have given up to step in. Why is that? My angel better get on the ball here. Maybe she has Lyme, too?
Posted by AliG (Member # 9734) on :
quote:Originally posted by tailz:
Ali, isn't mepron a liquid though? I'm so afraid to take a liquid with all my food reactions. I guess I have to take what I can get though.
Yes tailz,
Mepron is a liquid. IMO it can't even come close to being associated with any food. It is like taking lemon-flavored oil paint mixed with turpentine.
I believe both Mepron & Malarone need to be taken with a meal & fat for proper absorption. I'm not certain but I think Mepron needs more fat than Malarone. Probably because Malarone contains less atovoquone per dose.
Mepron needs around 24 gms of fat per dose.
I was having such trouble gagging down food due to the Babs annorexia that the easiest ways I found to ensure adequate fat intake were:
around 2 Tbsps Peanut butter or just under 2 Tbsp. butter on a slice of bread or toast -or- around 2 Tbsp. Marie's creamy salad dressing on a small salad -or- 1 cup of corned beef hash
The reason I was asking about increased Babs symptoms around the testing time is because Babs tends to go into a latent phase & then become active again.
I believe that a positive IGG/IGM test result is more likely when Babs is flaring up. I think that when Lyme gets taken down a bit Babs may flare again if it hasn't been eliminated.
I do so hope that this makes a big difference for you!
Ali
Posted by sixgoofykids (Member # 11141) on :
Tailz, honestly, I don't think any of us just have one or two bugs ... I think that is why it's important to build up our immune system while we are killing the bugs, so that we can reestablish a healthy balance in our bodies.
I had food intolerances, too, but didn't have problems with Mepron. It was a good drug for me, though babs treatment is hard.
Posted by disturbedme (Member # 12346) on :
I know how you feel.
I was SOOOOO happy when I found out I actually had a positive Bartonella test (this was the first positive I got on anything). It was an ANSWER for me. We were pretty sure I had lyme and/or co-infections, but a negative WB just made it so hard to believe, etc.
Congrats on the positive -- I mean that in a way that you can find a peace of mind in knowing there is something you can treat and get better from.
Posted by tailz (Member # 10014) on :
Thanks, everybody!
I still can't believe it. I can't wait to tell my neighbor. I don't think she thought I had anything - I think she thought it was all psychological, and she was the one who had approached me and asked what was going on when I had lost weight.
When I lost her support, things really went downhill for me, because even my family thought I was faking it, especially so when I had started looking a little better after some Lyme treatment and gaining some weight back.
It's weird, but I think my babs has been flaring all year, though I do notice a cyclic nature, but only in days - perhaps every 3 or 4 days I get a worsened flare.
Mepron is lemon flavored? I have trouble with lemon. It's possible though that I'll do okay since starting mastic gum for what I'm assuming is h-pylori.
I don't eat a lot of fat though. I guess grapeseed oil counts, and I do okay sometimes with organic peanut butter, so maybe I'll try that.
I'm thinking of calling Dr. B though next week and asking him to give me more Larium until I can see him in December. Another doctor had put me on that, and it WAS killing something. I don't think I did too well though on it though, because I had been put on minocycline for the first time, too, around that time - and mino definitely was killing something, too. So I got a double blast of bugs.
What I'm trying to figure out though is why don't they put us on these meds for a month, wait a month, and then test us to see 'which' infections we have? I'm convinced the only reason I finally tested positive for this was because I had been put on Larium on a hunch and started taking quinine powder on my own prior to this positive test. I can't handle quinine powder now though - I'm not sure - it may have iron in it, and I think iron is part of my problem.
Also, don't they realize that by holding off on treatment for so long waiting for that positive, I have essentially infected half of the Kutztown/Allentown area population with babesia? This past summer again I'd been eaten alive by mosquitos.
Posted by map1131 (Member # 2022) on :
Hopefully this is going to help you understand some of your symptoms and get your health going in the right direction.
See you're not crazy.
Pam
Posted by merrygirl (Member # 12041) on :
sorry to hear this, but glad you will get treated!
Melissa
Posted by Health (Member # 6034) on :
YEAH!
That is great to hear. Which Babesia test did you have done, the Babesia Microti, or the Babesia FISH, or the Babesia WA-1?
I found that treating the Babesia was a HUGE part to getting rid of EMF sensitivity for ME. I also want to say that after treating Babesia,
I found that when I treated lyme the herxing was SO much more. I had to take much less antibiotic, then work back up to full high dose. I was told that the Babesia hides the lyme, and that was SO true for me, so be careful it could happen to you.
I found that after treating babesia, I had to still treat lyme and then babesia later then lyme again.
HOW wonderful for you, I hope this helps your EMF, if you treat the babesia.
I would not buy the Artemisin until the LLMD tells you to. I did not take artemissin, I found that it made my heart race, I was on the Clindamycin and quinine though, I did not take the artemissin with this combo, too risky.
Post about what you take for it, I would like to know and hope it helps you.
Trish
Posted by CaliforniaLyme (Member # 7136) on :
Tailz,
CONGRATULATIONS!)*!*)!
I hope treatment for this helps you- it helped me a great deal. The few remaining symptoms I had that I thought was damage from Lyme turned out to be Babesiosis (and presumptive Bart too). I used the Dr. Zhang Artemesiae Formula. Other people locally have used the NutriBiotic Grapefruit Seed extract & Artemisia formula which worked great for them. I am sure there are other great brands, I just don't remember any others. I was on Mepron & Zith for 2 years, loved the taste actually, some people hate it... and on Artemisia the second year with no breaks. I was responsive to tx right away but would lose gains if I went off, so I stayed on. I hope you get a lot of healing. You deserve it- Best wishes, Sarah p.s. And if you did have any kind of malaria the same herb/drugs would help it- extra nice!!! I have a history of recurrent malaria so that was nice for me and since you have worried re that you may get some benefit there, too-
Posted by tailz (Member # 10014) on :
Trish, I think I had the FISH done, since I had it done through IGeneX. My short-term memory though is about negative 10 right now, so I don't know.
I'm afraid to take art now though if it's going to make my heart race more. Sarah, did that happen to you when you took it?
Dr. B treats with malarone and art. My insurance won't cover malarone - I don't know about mepron or the others.
I have to say though, Dr. B has Lyme himself, and he looked awful at my last appointment. I haven't seen him in about a year, and maybe it's me, but he looked about 15 years older.
These meds may treat my babs and malaria, but I sincerely doubt they will help my electromagnetic sensitivities long-term. I think that's why everybody needs to be retreated for everything.
I've been looking into EMF shielding devices - gosh, you have to be a millionaire to afford them.
Posted by cidanu (Member # 12503) on :
i just tested positive for babesia too and was very excited to start treatment!
i had a WA1 IgG Antibody test done by labcorp and my results were >=1:4096.
The doctor said this was the highest test he had ever seen!
but i don't understand what this number means.
if it's a ratio, how is that a higher number than 1:256, the cutoff criteria?
Posted by CaliforniaLyme (Member # 7136) on :
Tailz, almost everyone I know, actually can't think of anyone who didn't- have heart palpitations increase with Babs Herxing- but it is temporary and no one has ever died of it that we know of- while people have died of the disease!!! I had an increase in palpitations for 3 days with Artemisia- and THEN THEY NEVER CAME BACK!*!*)!*)!*)!)! Gone for years SINCE!
Great stuff. LOVE that stuff. Best wishes, Sarah
Posted by tailz (Member # 10014) on :
cidanu, I'm happy you tested positive, too! (well, you know what I mean).
I think my worst herx so far was on minocycline. I need more of that stuff, though it will probably mess my teeth up again. My herx on Larium was intense, but short-lived.
I wonder what Levaquin or Cipro would do to me? - those were two I'd been on a lot in the past. I can't even remember which bugs those two kill - bart? ehrlichia?
Posted by Health (Member # 6034) on :
I was taking Flagyl and Biaxin and Artemissin when I had the heart racing and I would
NEVER go through that, I dont feel it was a herx at all, it would have killed me I feel.
I also had similiar heart racing from other Antibiotic and antifungal interactions,
I think that heart racing is extremely dangerous and i have had this from medication interactions/
I never had heart racing with artemissin alone, or herbs alone, but with antibiotics and some herbs combined, I had heart racing.
I have never had heart racing from herxing, severe heart racing that is.
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