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.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
"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?
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
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 ]
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Neg only means they didnt find it they only test for 2 types i believe.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Frequent sighing is another babesia symptom. I sigh a lot!
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
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
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!!
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
posted
You can call your insurance carrier and ask. Coverage is different with different policies/companies.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
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
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
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.
Posts: 561 | From mass | Registered: Jul 2007
| IP: Logged |
posted
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
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
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
massman
Unregistered
posted
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.
IP: Logged |
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
posted
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
Posts: 872 | From New York City | Registered: Jun 2008
| IP: Logged |
posted
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 ]
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
springshowers
Frequent Contributor (1K+ posts)
Member # 19863
posted
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...
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
| IP: Logged |
posted
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 ]
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Massman, would you mind telling us your proposed herbal product to cure Babesia?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
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.......
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
| IP: Logged |
posted
What test did you use to discover all your kids had that strain?
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I have babs WA-1-really positive. And I live in Maryland
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
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.
Posts: 43 | From Upstate NY | Registered: Jul 2009
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
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.
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
posted
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 ":"?
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Babesia WA-1 IgG through LabCorp - test #807177
They do not have an IgM test for this strain oddly.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
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.
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
posted
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
Posts: 423 | From Virginia | Registered: Nov 2009
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Yes, I worked HARD to locate that code Mixxster. You have no idea.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
"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"
Posts: 121 | From Silver Spring, Maryland | Registered: Oct 2009
| IP: Logged |
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
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
Posts: 1226 | From USA | Registered: May 2007
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic