You should definetley start treating for Babesia.
Babesia is similar to malaria and you will need to take mepron, malarone or plaquenil. My Babesia test came out negative even with IgeneX. My LLMD treated me on symptoms alone.
What were the side effects of those meds? Can you take doxy while on them? And did your insurance pay for them?
I know I think JackieCalifornia mentioned to treat for something like 4 months for Babs? Is that what I should do to?
I agree with Mojogal. You really do sound like you have Babs and you need to treat it. LLMDs say that with untreated Babesia, your Lyme just won't go away.
Some insurance companies are really limited on coverage for Babesia meds because they are expensive. Your doc is probably more worried about your insurance balking at all the meds than he is about the visits. The meds can be thousands of dollars a month. Some ins cos only pay for Mepron, because that is what the CDC says is needed for Babesia, regardless of whether it works for you or not.
Mepron is not the only drug. It is combined with Azithromycin. There's also Malarone, which is a pill form of Mepron and another drug. I was on that for a long time because Azithromycin conflicted with another drug I was on. There's also Alinia (insanely expensive, most companies won't cover it), Clindamycin, Coartem, and even Lariam. Clindamycin did nothing for me when I was really sick, but a year later it was surprisingly helpful. Lariam is the only one I haven't tried yet.
There are also some good herbals for Bart. You could always start with one or more of those. There's Boluoke Lumbrokinase, Artemisinin, BLT, Crypto Plus, Enula, Mora, Bab-1, Bab-2, and Bab-3. I've been on them all. (Boluoke has been especially effective for me. It breaks up the fibrin in the blood where Babesia hides. Makes it easier for meds and my antibodies to get to it.)
Babesia can be quite serious when it gets bad. I encourage you to pursue this before you get any worse. I actually felt worse for months after starting treatment. Not everybody does, but I just want to warn you that it's possible.
A warning: starting Babesia treatment often triggers nasty herxing. My Babs herxing has always been worse than my Lyme herxing. ALWAYS ease in to Babs treatment. I had a couple of severe reactions when I went too fast on new Babs treatments. On the herbals, I literally start with just one drop. They have all triggered worsened air hunger in me.
And don't make any assumptions on treatment length. You could find your case resolved in 3 months, or maybe a year. In the area where I got my TBDs, I read a doctor who said that the average treatment time for Babesia for his patients is 6 months. Well, I've been treating Babs continuously for 15 months and I'm still fighting it. The vast majority of people recover from it in a few months, though.
Thanks for all the great info.
Where can I get all those herbs?
I'm calling my LLMD Monday and getting in as quick as possible.
And how can my LLMD show that I have Babesia?
I just had a run-in at the pharmacy. Took my new script from my LLMD for 3 pills of 100 mg doxy a day. They wouldn't fill it. Would only fill for 2 pills a day so now I'm going to have to take 2 pills for like a week and then the rest 3 pills to make the supply last until they refill it.
So now I'm super scared that they aren't going to cover my Babs meds at all. And I have no extra money to spend.
I am worried about herbals for Babs because of how it lives in red blood cells. I am afraid I'm going to get a blood clot or something.
I am so stressed out now I feel like I could barf.
One more tip: I have found that particular magnesium supplements ease my air hunger within a half hour or so. My very experienced doc and P.A. weren't aware of this and couldn't explain it. I've only found one other reference on another forum where a Babesia patient said magnesium eased his air hunger. It's not a well documented phenomenon.
The cheap magnesium oxide at big box stores is worthless. So is Magnesium Taurate. What has helped me the best is Magnesium orotate, malate, aspartate, or citrate. A blend called Magnesium C.A.O. is my favorite. It comes in easy to swallow 200mg capsules. (Hard tablets aren't absorbed well and big doses have a laxative effect.)
The kidneys filter out excess levels in the blood fairly quickly, so taking a bunch at once isn't very helpful. I found that taking 200mg 2 or 3 times a day is much more helpful. My tolerance is 600mg a day before a laxative effect kicks in.
In my research on this topic, the only thing I found to explain the benefit of Mg was a study looking at oral Mg supplements for Sickle Cell Anemia patients. I can only suspect the reason they did the study was because these patients said they felt better on Mg and someone wanted to know why.
The study found that the oral Mg helped hydrate the red blood cells, plumping them up and making them more effective at oxygen transfer. This made sense for why it helps me. It also suggested an answer to why I could have so much air hunger when my oxygenation is 98%. If infected red blood cells aren't transferring their oxygen effectively for use by the body, then the body's cells can be hungry for oxygen, even if it's circulating and available in the blood.
Mg is great for detoxing and soothing stressed nerves and muscles, so it's a good supplement to take for both Lyme and Babesia. Lyme can cause magnesium shortage in the tissues since it uses Mg as part of its reproductive process. Some think they shouldn't take Mg so as not to feed the spirochetes, but a deficiency can do harm to your body, especially the heart, so it's better to take the Mg.
How much does azithromycin cost without insurance?
My LLMD said that my insurance is probably the worst to have when having Lyme. I have Geisinger. He said BC/BS is probably the best, that they never really question anything.
I could get BC/BS from work (I have Geisinger from my husband's work) but I read stories online about BC/BS not paying for Babs meds so I don't know what to do.
Don't worry about possibilities. I know it's hard to do as the Lyme/Babs infected mind runs wild! (Well, mine did.) Try to focus on specifics and choose your battles. Don't exhaust yourself with "what ifs."
I find it odd that your pharmacy wouldn't fill the 300mg/day Doxy scrip. It's possible insurance wouldn't approve it for some reason. Maybe they wouldn't fill a new scrip because they thought you hadn't finished the previous one yet. They have all sorts of business reasons for restricting things. You just have to find out exactly why and then address that issue.
If your doc increased your dose, you need to communicate that so that insurance will understand that you're using up the old scrip faster than expected. I just did this with my Rifampin. Luckily, I didn't have a problem.
Does your LLMD do herbals? It's best to take Babs herbals only under the supervision of a doctor. The Boluoke ended up triggering serious symptoms in me that took me a month to recover from. I had worked up from 1 capsule to 3 capsules a day in only 5 days. I got so sick I had to stop all meds for several days and go get an abdominal ultrasound.
A month later, when I could finally start it up again, I had to open up a capsule and take just 1/3rd of the contents a day. It took me a month to work up to the 3 caps a day, and I STILL felt every dose with worsened air hunger about an hour later. It was about 6 months before I stopped feeling a response to a Boluoke dose. (I'm still on it - twice a day now.)
I took another supplement called Ailgeno for spleen support. The spleen filters the blood and mine got quite swollen for a few months. Not everybody gets the swollen spleen, but supporting it is helpful during treatment.
The 'natural' medicines for Babesia can be powerful, too. Many of them are only sold through doctors because of this. Some of them are available online, though.
Yes, I am trying to calm down. I'm just a nervous wreck about this whole thing. I am young and just want to have a normal life.
I think that may have been the problem. My pharmacy will only refill up to a week before the medicine is scheduled to run out. Mine ran out quicker because I was finishing up the bottle from when I was still taking 2 pills a day.
I was able to get on my prescription RX website. They have a new thing where you search for the drug and how much you are going to take and it will give you the price you need to pay and the closest local pharmacy with the cheapest price. Mepron was $20 for one month from Target. Not too bad. If they approve to pay for it of course.
I don't know if my LLMD does herbals. I've only seen him twice. LOL. I know he is interested in anything that "gets you better" as he put it.
Sounds like you're doing good research and asking good questions. Good for you!
Ask your doc next time about Babesia herbals. At the very least, you need to get tested. Just know that about half of Babesia patients test false negative on standard tests. The tests are so unreliable that the Red Cross doesn't even screen the blood supply. People are getting Babesia from blood transfusions. The CDC says that big pharma isn't interested in developing a better test because Babesia is so "rare" that they won't make their development cost back. Hah. If the CDC realized how many cases are really out there, they'd stop calling it "rare". They still tell doctors to treat it only if lab results are positive.
How's that for a chicken or egg situation!? Tests don't find it, so they don't know the true prevalence. Telling docs not to diagnose without a positive lab test is stunning to me. It makes much more sense to me to explain to doctors how to make a clinical diagnosis when lab tests are negative but Babesia is suspected. I think the CDC just doesn't trust doctors to use their brains or their judgement. They want to turn doctors into robots who follow instructions and lab tests. If they get their way, patients are doomed.
Okay, ever since I increased the doxy dosage to 300mg/day, all kinds of new symptoms have started including the air hunger and feeling like my heart just "stops". (still waiting for my insurance to give a pre-cert for my 2d echo of the heart). I believe these are Babs symptoms surfacing, at least the air hunger (I did have a major herx when I took herbs for Babs about a month ago).
I decided over the weekend to go back to 2 pills of doxy and the heart issue has completely stopped. However, my air hunger seems to be getting worse.
I called and have an appointment next Tuesday with my LLMD but I'm not sure I can go another week feeling like this. I feel like I can't get enough air into my lungs and I'm freaking out. I want to call my LLMD again but I know he will just say "go to the ER" like he always does and what can they do for me there? If I tell them I have Lyme, they will probably just laugh in my face.
I really believe the doxy is what is causing the heart issues. What other antibiotics are used for Lyme though?
Also, am finally getting my husband tested through Igenex next Tuesday just to be on the safe side. Most days he feels completely fine but has had some weird issues going on recently.
from what i have heard herxing can cause it. and people say you usually get worse on treatment before you get better (the herxes etc)
Always consider other reasons for 'air hunger' also.
I'm not saying this is what is happening to the people on this thread----- but I thought my 'air hunger' was Babs when in reality it was because I had pulmonary embolisms and I nearly died.
I had to cut back on the doxy though because I was so concerned about my heart. Plus I was getting NO sleep due to the heart issue. The past 2 nights, I have slept like a baby on just the 200 mg of doxy and no heart problems. And if I do have Babesia, which I'm 100% sure I do, it needs different meds I believe to clear it up.
I am hoping when I meet with my LLMD he will start me on the meds for Babs.
I was reading about symptoms of pulmonary embolisms and I don't really have anything but the air hunger. Did you have any other symptoms?
Many other symptoms (of course, since I have Lyme et al.).
I had very few of the symptoms that Mayo lists on their web site. Still had PE's.
My PE's started out as 'just air hunger' though. Then progressed to more severe symptoms which led to my 'near death experience'.
I'm just trying to say that although everything might SEEM like Lyme but we CAN get other health problems.
My air hunger started right after I increased my doxy dosage which is why I'm thinking it's Babs rearing it's ugly head.
But now I'm even more of a nervous wreck. I'm only 27 years old and in fairly good shape (besides the Lyme). I don't know what to do. I'm waiting for a call back from my LLMD.
My normal physician just called and said my appointment with a cardiologist isn't until February 13 and my insurance won't approve an echo of my heart until after that appointment.
Let's hope I'm not dead by then. The medical community is messed up.
try to relax. the medical community does suck. anxiety like i said is going to make everything feel worse! believe me lol
when you increased the dosage maybe the die off became alot for your body thus leading to the new symptoms? im not trying to rule anything out but it could be that. the die off can create new symptoms, and increase old before they start to dissipate ( the "things get worse before they get better" idea)
im rambling lol sorry. message me if you need to talk!
So, what did they do for your pulmonary embolisms? Are you out of the woods now?
I was sent home with an rx for Coumadin to take for 6 months. 6 months after I quit Coumadin (doctor's o.k.) I got another PE. Now I'm what they call a 'lifer'---- on Coumadin for the rest of my life.
If people think being on antibiotics is rough----- just try Coumadin!!!! You'll change your minds.