ME!!! and another family member. We both had Lyme and babesiosis.
It does take a wise doc to diagnose it, and then to take the specific meds, which are similar to treatment for malaria, which babesia is first-cousins to.
Our doc treated us first for babesia, and then that was done, then shifted to other meds to treat Lyme -- and none of it was doxycycline, which I understand is effective only in the very earliest stages of Lyme, which we had already passed before we found a Lyme doc. We are now both fine (as in 'cured') and have been for several years. Some people say they are never cured and don't believe it possible, but I'm the other way: appropriate treatment works. We are living proof.
Oops, typing too fast and then editing wrong. This sentence above should say, with additional words in CAPS:
*It does take a wise doc to diagnose it, and then FOR THE PATIENT to take specific meds, which FOR BABESIA are similar to treatment for malaria, which babesia is first-cousins to. FOR LYME, A VARIETY OF OTHER ANTIBIOTICS ARE USED, FOR EXAMPLE, OUR DOC USED TWO, ONE ANTIBIOTIC TO BREAK OPEN THE PROTECTIVE AREAS THE LYME BACTERIA HIDE IN [CALLED BIOFILMS] AND A SECOND ANTIBIOTIC TO THEN KILL THE BACTERIA INSIDE THE BIOFILM."
Thank you so much for replying to me! It is fantastic to hear that you and your family member have gotten better! I have always had a positive attitude, but it is just an extra boost to my morale to hear you speak your tale:)
Do let us know how you do, okay? Lyme can mess with mood, and while I don't remember feeling gloomy, I guess I could say my body felt gloomy -- if that makes any sense. I felt kind of tired and a bit worn out, but never got worse on meds than I was before starting meds. It's a slow path, but it was a steady one.
Every one is different in some ways, so it might not be exactly the same, but slow and steady improvement was what we both had. Never worse on the meds than before them. I'd say eat well, sleep enough, think good thoughts on what you will do when you're fully well again. You'll get there!
I beat Babesia. It wasn't easy but I did it. I was on a very potent drug called malarone. It made me anemic and after 6 months I wound up in the hospital needing a blood transfusion but after my hospital stay the Babesia was gone.
Yes, I personally know a babs with Lyme success story. This individual was on mepron , meperon(?)(the maleria drug) for the babs. No hospital stories either, all was good.
I have Anaplasmosis too, I have never met but a few who do. Also Probably Babesiosis and do have Lyme and Bartonella. I was just going to ask, I'm taking Plaquinel which does usually help with the pain. It's a drug for Malaria, but thought I would pass that on. I'm rooting for you!! It is good to hear the success stories! Fight we will!!:) SO GLAD you got diagnosed earlier than way later!
I just went digging through our old records, and fwiw, my family member and I (we both had Lyme and babesiosis) were treated for babesia with:
Mepron (generic: atovaquone)
Zithromax (generic: azithromycin)
taken at the same time (that is, *not* one med for a while and then the other for a while).
When the babesia was gone, we were treated with different meds for Lyme. That was about 7 years ago, so there may be other meds in favor now, something newer -- or not. It worked well and gave neither of us problems with the meds.
I personally have beaten Babesia. I have to tell you the reality for me, it included a hospital stay because the Malarone made me very anemic and I needed a blood transfusion. After the transfusion the BABESIA seemed to magically disappear. That was 2 years ago.
You say above, "I personally have beaten Babesia."
Mojo, those are sweet, sweet words. Hallelujah and yippee!!! :)
I had Anaplasma too!! My Doc said that I was only the second patient that she had ever had that tested positive for it. I am taking Doxy for that and Mepron for the Babs. I feel much better than I did a few weeks ago, but I have kind of plateaued. I am glad I caught it early too!! Thanks for your response!
I see you are the second person that said the meds made you anemic. I have been on Mepron for almost two weeks, with a prescription for 3 months. What do I need to watch out for? Were there specific symptoms that you noticed when you became anemic, or when you started taking the meds?
I dont know if I just hit a wrong report button or something, I hope not!! Anyway, that is crazy!! I know they said I was in a very small group too with the Anaplasmosis. Man did I get sick a week after the bite, with liver enzymes so high at 260. I read somewhere that only 20% of tics themselves carry it.not sure , but crazy. When the CDC called me, they said it was extreme rare in my area. My test for it was WAY high too. I think positive is 1.33 and mine was 5.4. Insane to think a tick can do this!! You hang in there!! Love to know how you continue to do!
"When the CDC called me, they said it was extremely rare in my area."
There is a huge wall of denial at the CDC when it comes to Lyme and other tickborne infections -- that is the basis for many MDs saying that Lyme is rare, hard to get, and easy to cure with a couple weeks of doxycycline, and never mind any co-infections the tick carry about half the time (anaplasmosis, babesia, bartonella, etc.)
What the politics are at the CDC that is driving this, I don't know, but that's why finding an MD who does *not* follow the CDC's outdated, hard-line position is important.
Being an LLMD is a state of mind, not a degree or a membership group, so any doc can say 'Yes, I am a Lyme specialist.' Even docs who don't know anything about Lyme except a couple weeks of doxycycline and bye-bye. Be careful out there.
I agree with Jackie. My LLMD told me that MOST ticks nowadays are carrying Ehrlichia of one form or the other, whether it be Anaplasmosis or the others in the Rickettsia family.
When I got referred to one of the Infectious Disease Specialists (Ignorance Dominated Schmucks-lol) in the area,
he called me back before my appointment saying that there is NO LYME IN THE STATE OF FLORIDA. He said if I haven't been out of the state in the past several weeks, there's no need for concern.
I told him that I had been out of the state to visit back home in Ohio a couple years ago, but I had the classic bull's eye just 6 months ago, was given a 3 week course of Doxy, and it had flared up with worsening symptoms twice si nce then.
He told me there's "no such thing as Chronic Lyme" and hung up on me. I went to see him at my scheduled appointment time anyways, and his office door was locked. I knocked and nobody came.
I sat in the parking lot for a few minutes and another patient walked out his door. An employee looked around the parking lot, and closed back the door. I went to the door and it was locked again. I knocked and nobody came.
My LLMD, who is in this same area of Florida, says that it has been PROVEN that 1 out of 6 ticks here in the state of Florida are now carrying the Burgdorferi spirochete.
Most docs, even LLMD's, wouldn't even test for Anaplasmosis if you came to them with a tick bite, they'd just treat you with Doxycycline (hopefully at least 400 mg/day for at least 6 weeks),
and that SHOULD take care of any form of Ehrlichia, and possibly suppress the Lyme enough that it will be in a good remission for a long time if it was caught early enough.
He also says that a MAJORITY are carrying Bartonella as well, which can be a nasty co-infection, especially in immunocompromised individuals such as those with persistent Chronic Lyme or HIV.
A lot of people may have gotten Bartonella before they even got Lyme, if they were around cats or even dogs that carried ticks or scratched them.
Babesia is also even more prevalent in ticks than Lyme, and is very hard to test for since the testing is done for the most popular form, Babesia Microti, and there are many more strains out there.
Like Bartonella, other than the onset of the flu-like symptoms, with Babesia, if you are otherwise healthy and not living with Chronic Lyme or otherwise compromised immune systems,
many people live with Babesia and aren't bothered by it, or even know they have it. For those with Lyme or compromised immune systems, it could be fatal.
BTW, I'm about to start on Mepron. Anything I should look out for?
Yeah, the thing to look out for is its ugly yellow color, as I recall. (Liquid, right?)
Seriously, we (me and my family member) were fine on it, and I am sensitive to everything, including getting a buzz from plain Tylenol and not being able to drink alcohol because of the weeklong hangover that results after even the smallest amount. Total lightweight here, but did just find on Lyme etc. meds.
Once I was done with 'babs', the battle was at least half over -- I was tired after having been ill for many months pre-diagnosis, but then it was on to Lyme treatment, and things just slowly got better throughout treatment for me and for Family Member. Go for it.
Thanks Jackie-Funny about the alcohol right? I used to be able to have some drinks without a problem. It made more sense to me when I heard Dr.
Burrascano say that we have to stay away from as much sugar as possible, and "Absolutely no alcohol, which in addition to the sugar, is especially
stimulating to the Lyme spirochete" (I'm paraphrasing there, it was something like that). I just now noticed you commented on the Mepron when
I was looking through some of my previous discussions. I still haven't been able to start on it because the pharmacy says their supplier is out and
waiting on production til "mid-November", which we're past now, but its still not available. I'm a bit worried this is affecting my LLMD's plan, where he
wanted me to start on it 2 weeks in to my 6 weeks of IV Rocephin. Now I've got less than 3 weeks left. I've got an appointment to talk about it with him
next Tuesday. The other option, Malarone, isn't covered by my insurance, but I am taking A-Babs for the time being. I hear that the Mepron can
"uncurl" the cyst form of Lyme, so it would make sense to be attacking any of that going on, but I'm not sure if there's many left after 6 months of
pulsing Flagyl. I took Zithromax the month of September, but I'm not sure if I'm supposed to go back on it with the Mepron. How long did you have to take Mepron? Does it have to be 4 to 6 months usually?
You say: "Absolutely no alcohol, which in addition to the sugar, is especially stimulating to the Lyme spirochete" -- Who knew Lyme were such party animals.
--- Re Mepron out of stock: Leave a message for the doc and see what alternative approach he recommends, and so he can adjust the rest of the battle plan as needed. Might also check Canadian pharmacies for Mepron. Not sure I'd source elsewhere except maybe Europe, Australia or Japan? And I'd get the doc's okay before proceeding with alternatives such as those.
"The other option, Malarone, isn't covered by my insurance" -- if the doc specifies it, maybe the ins. co. would agree due to special circumstances.
You say, "How long did you have to take Mepron? Does it have to be 4 to 6 months usually?" Don't have my notes accessible at the moment, but yeah, it was months-worth. Worked great, which was my only criterion.
Sounds like your doc and mine have the same play book -- go for it!
LOL-Thanks Jackie. I've looked into ordering it through my insurance company's mail order service, but I'm not sure I trust the method they would use to send it, since its this weird, yellow paint like stuff that might be sensitive to different exposure.
MEPRON Suspension (bright yellow, citrus flavored) containing 750 mg atovaquone in each teaspoonful (5 mL).
Bottle of 210 mL with child-resistant cap (NDC 0173-0665-18).
Store at 15° to 25°C (59° to 77°F). DO NOT FREEZE. Dispense in tight container as defined in USP.
5-mL child-resistant foil pouch - unit dose pack of 42 (NDC 0173-0547-00).
Store at 15° to 25°C (59° to 77°F). DO NOT FREEZE.
oops, I hit the send button by accident (new computer, silly buttons), but what's pasted above is online from pdr.net, filed under Mepron.
Have the stuff shipped to your office or to a pharmacy to pick up there. Just a thought. Given what I'm reading about the coming winter, this is going to be a real blast ... of cold. I would say have it held at the post office or a delivery service, but stuff is carried in unheated vans etc. I would guess. There's gotta be a way, tho.
I didn't find the stuff all that bad -- down the hatch, and done.
Thanks again Jackie. I'm going to talk with my doc and see if he can give me an extra week or 2 of IV Rocephin if I don't get the Mepron before those 6 weeks are up.
by kittycar, less than a minute
I guess I am pretty lucky. My insurance pays for Mepron and my pharmacy has it shipped next day! I have been on it for a month now with no bad reactions, but no earth shattering improvements either. I am also taking Artimesinin (wormwood) and I take two drops of the DoTerra Oregano oil everyday. Oh yeah, and i am still taking Doxy 4 times a day. I will be on it two more months till my LLMD re-evaluates me. My patience is being tested, I just want this ugly bug to pack it's **** and leave haha!! I caught it early, I am young and strong, and I have faith that God will heal me, so that I can go on to worship him in good health:) I am praying for all of you, too, out there struggling with these illnesses.