I've spent the last 6 months treating for Lyme, and the last 2 months treating both Bartonella and Lyme. But now I'm feeling very ill with most of the worst symptoms of Babesia.
This morning my LLMD emailed me and said the Igenex FISH test and antibodies test was negative. We did not test for the WA-1 strain because I live in Maryland.
This is so discouraging. I have not ever gotten a positive on Lyme, and now all negatives on Babesia. I thought for sure Igenex would find it.
I feel so ill right now, my headaches and fatigue are killing me, I can't work, and I'm too ill to be a student. Theses test are so expensive. That Igenex test was over $500. Will Blue Cross Blue Shield reimburse any of it if the results are negative?
I really need this treatment, I feel so ill, and am in a tremendous amount of pain. I have horrible debilitating fatigue, never ending debilitating headaches, night sweats, backpain, neck pain, photophobia, and most other Babesia symptoms. Will Blue Cross Blue Shield pay for Mepron without a positive test?
I need treatment now, but I also need my insurance to help pay for it.
What am I supposed to do?
[ 11-04-2009, 02:55 PM: Message edited by: mixxster ]
Posted by Tincup (Member # 5829) on :
You said...
"We did not test for the WA-1 strain because I live in Maryland."
From what I have noted... there is more WA-1 in Maryland than B. microti.
Maybe that would explain some of your problems?
Feel better soon!
Posted by Dekrator48 (Member # 18239) on :
I remember reading that there are at least 13 strains of babesia, perhaps as many as 24, but tests are only available to detect 2 strains.
Posted by mixxster (Member # 22765) on :
quote:Originally posted by Tincup: You said...
"We did not test for the WA-1 strain because I live in Maryland."
From what I have noted... there is more WA-1 in Maryland than B. microti.
Are you sure? How is that possible, thought is was a west coast strain. Should I try testing through Quest for WA-1?
Posted by Tincup (Member # 5829) on :
mixxxxxx said.. "Are you sure? How is that possible, thought is was a west coast strain. Should I try testing through Quest for WA-1?"
Am I sure?
Well, I can't say 100% because they are not my patients... but the LLMD's in Maryland I spoke with mentioned this was the case... several times.
Thinking it is limited to the west coast only is like the IDiots saying years ago that Lyme is only found in the northeast... and there is no Lyme here in OUR state.
The reason they think it is.. is ONLY because they haven't looked for it elsewhere yet.
As for the Quest test... I won't recommend you having one.. that is a decision you have to make depending on your financial situation.
If your LLMD will treat you without a positive, based on symptoms alone...
I'd do that.
I am NOT a doctor.. and this is NOT medical advise.
Posted by Hoosiers51 (Member # 15759) on :
I would try testing for WA-1 through Quest, and also you could try testing for "babesia duncani" from Sonoma County Public Health lab. I believe both would be covered by insurance.
I would "provoke" the babesia with artemisia or artemisinin before doing any babesia test again, maybe 4 days on, 3 off, 4 on, then take test (while on the artemisia or not). I think that would give you more accurate results.
You did the antibody test through Igenex though? Is that where there is a : in the results, like <1:80 or 1:256, etc? But you only did it for babesia microti? Just trying to get a clear idea.
If you did a test for babesia duncani through Igenex that had a : in it, it should be fairly accurate, though there could have not been enough babesia in the blood drawn to find it. So that's why if you retest through another lab, provoke it with herbs.
Also, if you only did babesia microti testing and the FISH, you should probably get some kind of either duncani or WA-1 test done.
Try to take the test when you feel the symptoms are flaring, and like I said twice already....provoke it!!!
Posted by mixxster (Member # 22765) on :
The issue is not if I should start treatment. The issue is the following:
Do I need a positive test in order for insurance to pay for some of my Mepron treatment?
If there is any situation that insurance can help pay for this, then I would like to be in that situation.
Posted by Hoosiers51 (Member # 15759) on :
Also, Tincup is right. People are testing positive for WA-1/duncani all over the country. Maryland included. It is just as common, if not more common, than babesia microti.
Posted by JamesNYC (Member # 15793) on :
mixxster,
WA-1 was first noted on the West Coast, but is being found everywhere, even the East. Don't assume your location means you're not exposed.
The FISH RNA test is RARELY positive. If it is that means the actual RNA of Babesia was found in that blood sample. A negative test does not mean that you're not infected. l
The most accurate, and the most time consuming, is a knowledgeable person looking at stained slides.
I had a nothing on my IGM, and minimal IGG titer on my babesia microti test. But that coupled with the signature symptoms led my LLMD to dx babeosis. Another Dr could have said I was not infected--he would have been wrong.
How negative were your titer tests?
Finally, while some of the symptoms you list can be from babesia, they aren't necessarily signature.
What other symptoms do you have? Air hunger? Shortness of breath? etc.
I would think if your Dr diagnosis's babs, and prescribes Mepron, the insurance would have to cover it regardless of the tests. If your insurance won't pay for the insanely expensive Mepron, maybe they will pay for Malarone. It's not as effective, but still will work.
James
[ 12-10-2009, 01:29 PM: Message edited by: Anna Lee ]
Posted by mixxster (Member # 22765) on :
Yes, Hoosiers51, I have read about doing a "Antibody Priming Trial", or as you say provoking, Dr. S says take 10 days of mepron AND artemisia, then wait SIX weeks without treatment, then take the test. I am far to ill to wait six weeks with no treatment.
My whole life has been flaring with these symptoms, but its only been recently that my LLMD has pointed out it is probably Babesia.
Posted by Hoosiers51 (Member # 15759) on :
I would agree with James, and say the insurance company should not discriminate based on test results.
If I had to assume, I'd say people with positives still get denied Mepron by insurance, and people with negatives probably still get it from insurance. It's moreso about whether or not the insurance company wants to pay for it, than what your results say.
I tested positive, so I can't give personal experience, but I'm sure there are lots on this site that tested negative.
Posted by treepatrol (Member # 4117) on :
Neg only means they didnt find it they only test for 2 types i believe.
Posted by Hoosiers51 (Member # 15759) on :
Nah, don't wait six weeks without treatment.
When I did my last test from Sonoma County Public Health Lab that came back positive, I was on Mepron. Had been for 4 months. I took it the night before the test, but I don't think I had taken it yet the morning of the test.
And I had taken artemisinin the night before the test, if I remember correctly. I was definitely on it days before the test.
I think that's why it actually came back positive, the artemisinin was pulling the babesia out.
But I have no way of knowing what the test would have been if I wouldn't have been taking that stuff.
When I had my positive FISH, I wasn't on anything "anti-babesia," but I had been doing salt/C for weeks before, and that was giving me night sweats.
Posted by mixxster (Member # 22765) on :
I'm not quite sure what air hunger feels like. There are times when I feel like my blood is carrying too much CO2, and breathing feels empty, but I'm not hyperventilating or anything.
Posted by Hoosiers51 (Member # 15759) on :
Frequent sighing is another babesia symptom. I sigh a lot!
Posted by Tincup (Member # 5829) on :
Insurance companies have a mind of their own.. or no mind at all in some cases.
Don't delay treating while trying to figure out what they are doing.
Posted by disturbedme (Member # 12346) on :
Why doesn't your LLMD treat you regardless of what the tests say? That is what my LLMD does. That is what most LLMDs do.
My Babesia FISH was negative as well, but I also had many, many Babesia symptoms so my doc treated me for Babesia regardless of what the test said.
Posted by KS (Member # 12549) on :
I have BC/BS and they paid for my Igenex tests and for babesia treatments....even though I never tested positive for babesia (I had multiple tests run using a couple different methods from a couple different laboratories).
You may be dealing with Babesia but be sure to rule out other things like Brucella and Q fever as well. Sorry you are feeling so ill but keep fighting/treating...there will be better days!!
Posted by mixxster (Member # 22765) on :
I never said my LLMD wouldn't give me the mepron right away, he even clinically diagnosed me with Babs and offered Babs treatment months ago without any test results. At that point Bart was more serious, so I went with that route of treatment instead.
I am simply asking about financial advice for getting help to pay for the insanely expensive Mepron. It is me, the patient who wants to test positive for something.
I just want an answer to everything I have suffered through.
Posted by mixxster (Member # 22765) on :
Thank you KS, that is the reply I was looking for. I'm on a low tier of BC/BS health care, and still worry they wont cover it.
Its most likely not Q fever or Brucella because I've been on doxycycline, rifampin and other antibiotics for months. Why these have cleared up many other problems, they have done very little to help my headaches, fatigue, and nightsweats.
Does the fatigue get any better after babesia treatment? My fatigue and headaches are the most debilitating.
Posted by zil (Member # 12048) on :
You can call your insurance carrier and ask. Coverage is different with different policies/companies.
Posted by JamesNYC (Member # 15793) on :
mixxster,
Babesia causes an anemia-like condition. You have plenty of RBCs but many are deactivated because they are infected. Therefore you're always feeling like there isn't enough O2.
If you look up the symptoms of anemia, you'll see many similarities.
Air hunger is when you feel like you're not getting enough air, even though you're breathing normally. So a feeling of holding your breath.
Also, feeling like you have a 50lb pack on you all the time so everything just takes SO much effort. Walking up a flight of stairs that should be easy can leave you panting.
But a feeling of ever present physical fatigue, as opposed to sleepy-fatigue is how I differentiate between Babs fatigue and lyme fatigue. That is because there simply not enough RBCs to carry the amount of O2 to your muscles and tissues.
The fatigue will go away with treatment, but it takes time. At least 4 months as the RBCs reach the end of there lifespan and are replaced by new, uninfected ones.
Find out from your insurance co about the Mepron, we really can't tell you here. Every insurance co is different. And there are some other treatments if you can't afford Mepron.
Finally, lyme and babs work synergistically to suppress the immune system. The lyme allows the babs to get much worse. But also vice-versa.
You know you've got something, maybe you should try treatment and see if you get better rather than stressing about proof from a test.
James
Posted by mixxster (Member # 22765) on :
Thank you James, I do think this really summarizes my problems. Though I was hoping to the "sleepy fatigue" was caused by the Babesia so I could make all this go away.
If I'm still excessively tried after babesia treatment, it will still be hard to be in school. What a rough life we all have.
Oh well, one step at a time.
Posted by KS (Member # 12549) on :
Hi Mixxster-
I can't answer your question about fatigue and headaches...those were symptoms I never experienced. My most debilitating symptom was nausea so we thought that maybe it was babesia. Needless to say, I didn't see any significant improvements on babs treatment.
I will say your symptoms do sound a lot like babesia.
Posted by JamesNYC (Member # 15793) on :
Mixxster,
The sleepy-fatigue vs ugh-everything-is-so-hard-fatigue was MY experience. It may not be universal.
However the sleepy-fatigue may be from lyme that is made worse by the babs. Hard to tell, the symptoms do overlap.
Another signature symptom is insomnia. So, when I'm tired, but can't sleep through the night I believe it's caused by babs.
With lyme, I sleep all the time, and wake up tired, wanting to sleep some more.
Also, if you're able to exercise, if it's just lyme, you'll feel better. If you have babs, you'll feel like crap for days after.
Other people report headaches, I never had them though.
Have you read Dr B treatment guidelines? They have some good info.
I don't know how old you are but you mention school, have you ruled out mono, cytomeglic, or other common virus's which cause fatigue?
James
Posted by mixxster (Member # 22765) on :
Yes, the insomnia! I'm so tired all day long, but I can't fall asleep to ease the feeling!
I'm not even able to take naps, though my body is telling me to fall asleep all day long. If
this is tied to babesia and goes away with treatment than I will finally be at peace! The
insomnia+fatigue+headache+nightsweats combo is that absolute worst!
I used to feel better working outside in the summer, and I think that helped my lyme, but since
then my babs symptoms have taken over, you are exactly right, I can no longer be very active at all because
I will will feel horrible days later.
I have read Dr. B guidelines, but due to my poor memory I will be reading them again.
I just turned 20 years old and am on medical leave from college right now. They expect me
to return in February or I will be considered a drop out.
[ 11-03-2009, 04:37 PM: Message edited by: mixxster ]
Posted by massman (Member # 18116) on :
Well I will give a radical suggestion.
How about skipping the wickedly expensive drug and using a mixed herbal designed specifically for micro-parasites ?
Probably about $30 a bottle and treatment averages about 4-6 weeks. So maybe 2 to 3 bottles.
[ 11-03-2009, 05:04 PM: Message edited by: massman ]
Posted by mixxster (Member # 22765) on :
I have had very little luck using herbals for Lyme or Bart, and probably few herbs except maybe artemisia or artemisinin would help Babesia. I certainly wouldn't expect to be cured by any herb in only 4-6 weeks.
Is there any particular brand or formula of artemisinin I should use?
I do also intend on getting on mepron soon.
Posted by JamesNYC (Member # 15793) on :
Mix,
Yeah, the insomnia you're describing is very familiar. Waking up multiple times during the night and having difficulty falling back to sleep is common.
Usually, when you're exhausted, you can sleep easily. Strange when you can't.
But SOOOO many things can cause insomnia that it's often overlooked as a symptom.
The supposedly "best" artemisinin is made by Allergy Research and is sold under that name and Nurticology. The best prices I found were at Vitacost, but you can shop around.
My LLMD bumped my dosage to 500mg a day from the original 200mg.
Again, have you ruled out those other viruses?
With Mepron, I was given the standard dose of 1 tsp twice a day for 6 months. The symptoms went away--but then came back worse over the next 5 months. Now I'm on twice that dosage and I'm staying on it a long time!
What Dr S says is correct, the standard dosage for Mepron is taken from what works with Malaria, and has NOT been proven to be the correct dosage for babs.
Anyway, your LLMD sounds like he's on the right track. Where is he, in MD? Is he the one that's in Montgomery County?
I'd suggest getting on the treatment ASAP, it's only going to continue to get worse.
James
Posted by massman (Member # 18116) on :
Sorry I am a radical and have been a pro in the natural health field for 25 years and am trying to help lyme sufferers from my experience with many patients.
Posted by mixxster (Member # 22765) on :
Thank you for all your help James,
I have not ruled out any of those viruses because I don't know much about them. This fatigue that I've had
for most of my life is so bad that I wouldn't be surprised if there was a viral component.
However, I have been bit by more ticks than most anyone I know. As a child I was told to simply watch out
for a rash, otherwise ticks are nothing to worry about. Spent my life hiking through and exploring woods
with extremely high tick populations. I dedicated my studies as a student to biology and environmental science. I
have been bit by ticks in most of the popular parks in the Washington D.C. area. I'd say the total
tick count for me has been upwards of 150 bites. Nobody told me these things carry f****** malaria like
illnesses and horrible illnesses that live in your brain.
So given the degree of exposure I have had with ticks, and my mothers exposure before her pregnacy with me,
and the fact that she has all the same problems, TBD are my number one suspicion. A virus, particularly a
CFS associated virus like like XMRV has been in the back of my mind for a while though.
But since my LLMD has clinically diagnosed me and my mother with the "holy trinity" of Lyme, Bart, and
Babs, that is the road of treatment I will be traveling on, which so far has been a great health benefit to
me.
I live in Montgomery County, and my LLMD is in Prince Georges County. He runs a small clinic and most people
have never heard of him, but we really like him.
[ 11-03-2009, 05:50 PM: Message edited by: mixxster ]
Posted by mixxster (Member # 22765) on :
quote:Originally posted by massman: Sorry I am a radical and have been a pro in the natural health field for 25 years and am trying to help lyme sufferers from my experience with many patients.
I'm sure you have had great luck helping patients, I am just saying I've had great luck with what my doctor has prescribed, and for some reason I've just never had much luck with herbs.
But I do think that Artemisinin may play a role in helping me get better.
Posted by JamesNYC (Member # 15793) on :
WOW 150 bites??? That is IMPRESSIVE!! Ahhh, but how many were deer ticks?
I got 2 more last week, but I think I'm below 10.
Yeah, I'd say that all the TBD would be your diagnosis. LIke, what wouldn't you have that can be carried by a tick? Yikes. Why only the trinity? How could you not have Ehrlichia, mycoplasm, etc as well?
I asked about your LLMD because the one in Montgomery County writes a very interesting BLOG.
Anyway, let us know how you're doing. We've all been there.
James
Posted by mixxster (Member # 22765) on :
Well I very well could have others (and I worry about undiscovered ones), but my doc said don't worry
about the others, you'll be on Doxy/Rifampin and the Doxy/Levaquin combos for so long that they will
probably be cured from the Lyme and Bart treatments. Everything else I've read says its the Holy
Trinity that I should be focusing on.
Please do PM me info about this blogging doc in Montgomery County, sounds like a great read.
[ 12-10-2009, 01:34 PM: Message edited by: Anna Lee ]
Posted by springshowers (Member # 19863) on :
I agree with massman
What many feel is babesia could well be babesia but there are many other protozoan infections in us .. as you all know and heard of being discovered and most likely many that are just there.
Its a huge issue.. Maybe ways to treat from herbals to salt c to rife to anti protozoan meds too.
I am always pointed back to that direction over and over and I think many others do too...
Posted by mixxster (Member # 22765) on :
Ok found the montgomery county blog, he does in fact say that blood tests find B. duncani more often than B. microti on the east coast.
I guess I'd like to know if that's the strain I have. I'll try to get some Artemisinin, and see how I react to it. Then get the Quest test for B. duncani.
JamesNYC: Should I get 'Super' Artemisinin, or just Artemisinin?
[ 12-10-2009, 01:36 PM: Message edited by: Anna Lee ]
Posted by seekhelp (Member # 15067) on :
Massman, would you mind telling us your proposed herbal product to cure Babesia?
Posted by kellyjk4 (Member # 19731) on :
mixx, I didnt' read all the posts (too wiped out) but I wanted to let you know -
My insurance company (BC/BS) covered my Mepron with only a normal copay, without any positive labs.
Then, when I had a bad reaction to the Mepron, they covered Malarone with another normal copay.
I've never even been tested, since I have such obvious symptoms of Babs.
What I would do is call my insurance company and ask what my cost would be for both drugs, then discuss that with my LLMD.
Posted by Hides1 (Member # 6348) on :
All my kids had/have Babesia Duncani -which is predominantly west coast. But they have never been there- so how do we explain that?
It is all over never doubt something is just in the west and just inthe south. For a while there they didn't think people had Lyme in Florida...anyone ever think all the birds carry those darn ticks and diseases.......
Posted by mixxster (Member # 22765) on :
What test did you use to discover all your kids had that strain?
Posted by beths (Member # 18864) on :
I have babs WA-1-really positive. And I live in Maryland
Posted by Eliz428 (Member # 21509) on :
Mixxster,
I like you have a headache that is unbearable 24/7 since Dec 08. My lyme treatment has relieved some of my neuro issues, but I could never touch the headaches and the sweats and temperature fluctuations.
I had all of the testing back in July, Quest, Igenex, and Sonoma County Health and all came back negative, but I know I have Babs. I can't break through these symptoms even though the others subside.
When I went back to my llmd to address this they wanted to retest. I told them no. I asked them to call in my script and preauth my malarone with BC/BS. If they approved it, I would save the testing $. If they didn't I would consider a retest.
Unfortunately, the (sorry) IDIOT receptionist told the ins. co. the diagnosis was lyme disease with night sweats, instead of suspected or clinical diagnosis of babesia so they swiftly denied.
I think it all depends on how your LLMD fills out the diagnostic codes as to whether or not they will pay. I decided that I could pay for 2 mos. of malarone for the same cost of the retest and at least I would be getting treated.
I am three weeks into treatment and no relief in sight. In fact it is worse. I never thought I had air hunger, but I do now. Headaches over the top. Can't sleep. Which all just honestly confirm to me that now that the malarone is working...I am getting worse before I get better. I hope I'm right.
I hope this info helps. Since I was exactly where you were a few weeks ago, I thought maybe my experience would help. Best of luck to you.
Posted by Hoosiers51 (Member # 15759) on :
I have been having a strong response to Enula by Nutramedix.
As far as Super Artemisinin vs. Artemisinin, I found the "Super" to be pretty powerful. It actually gave me this weird pulsating sensation in my ears on occasion, that I still get from time to time, even off the stuff.
So I'm slightly concerned that the "super" was too much for me, but if you want powerful, you could go with that one.
Posted by mixxster (Member # 22765) on :
Okay, I still never tested for B. Duncani, and now I'm really regretting not getting it. What are the test codes form Quest/Labcorp for WA-1?
Anyone know of a lab that tests for B. Duncani/B.WA1 and is covered through insurance without the need for a reimbursement form??
Also my doc claims the Igenex result for babesia microti antibodies was "Zero" Why isn't there a ":"?
Posted by seekhelp (Member # 15067) on :
Babesia WA-1 IgG through LabCorp - test #807177
They do not have an IgM test for this strain oddly.
Posted by mixxster (Member # 22765) on :
Thanks.
Strange that a search for any of those terms and the test code reveals nothing on labcorp.com. Sounds like another lyme-esque conspiracy. And I Really want the IgM too.
Anyone know Quest's code? Could have sworn I saw someone say Quest had a WA-1 test that was better than Labcorp's.
Posted by Karen Mc (Member # 23354) on :
For what it worth I am taking the "regular" artemisnin and it seems to be plenty powerful enough.
I use the Allergy Research from my doctor. I would be leary using the super as you don't want to overdo it.. I still seem be be herxing with the regular.
Good luck
Posted by seekhelp (Member # 15067) on :
Yes, I worked HARD to locate that code Mixxster. You have no idea.
Posted by mixxster (Member # 22765) on :
I found the answer to my previous question about WA1(B. duncani) at Quest:
"CPT Code(s): 86753:" WA1 IgG Antibody, IFA [17231X]
Found at VA-Chantilly Quest Lab. Not listed as a Babesia at all, but just as "WA1"
Posted by pamoisondelune (Member # 11846) on :
I haven't read this whole thread;, i'll just list the herbals i take , that keep my Babesia symptoms to a minor minimum:
Raintree brand "Amazon A-P", 1950 mg, 3x/day with meals. I think this is the most effective one. That's 3 pills per dose, a higher dose than they recommend.
Coptis chinensis, extract, 40 drops (1/4 tsp), 3x/day w meals; or Coptis pills, 450 mg, 3x/day with meals.
Elecampane, extract, 40 drops, (1/4 tsp), 3x/day w meals.
Noni, pills, 1300 mg, 3x/day w meals.
Andrographis, 1600 mg, 3x/day w meals--- i take that for lyme, but i just heard Dr H in the 2008 lyme-autism conference say that it's an anti-malarial, so maybe it helps w Babesia too.
Cryptolepis i have in reserve to take if i need an extra booster. It's a root from Africa.
Quina by Nutramedix i have in reserve.
Artemisia annua and Artemisinin i pulse, 3 days on , 4 days off, if the symptoms are increasing; i tend not to take them unless i have to.
Rub ribs sore areas with essential oils if they get really sore. Search on Farah's posts for recipes. I don't know if sore ribs are a lyme or Babesia symptom. I've posted my recipe before. 1 tsp olive oil as a carrier oil, plus enough drops of 5 different essential oils to equal 1/4 tsp, since Farah says for lyme, the essential oils should be 20-25%.
I've been on these herbs for 10 months. They keep me from falling asleep at noon, and other Babesia symptoms.
---Polly Polygonum
Posted by mixxster (Member # 22765) on :
I'm having the really sore ribs, I always get it when I'm treating Bartonella. And right now I'm treating Bart and Babs.
Having some serious headaches too, don't know if its a herx, side effect or a symptom. But I've always had headaches, I just hoped they'd be gone this far into treatment.
Polly, I'm glad you don't fall asleep at noon like I do everyday. Strange that I pass out so quickly in the day, but am lucky if I can get a wink of sleep at night. And yet this messed up sleep pattern is a completely undocumented symptom.
Are most people having trouble getting a positive?
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