Well, you all heard right. I PUSHED my doctor to run a malaria test on me, and it came back equivocal. He said that means, they aren't sure. I think it means it was the last acceptable high value before it would be considered 'positive'.
Also, I have never been outside of the US. I've lived in Illinois, Virginia, and Pennsylvania - and whichever states you drive through.
I'm going to get it redrawn. My question though - I was so stunned, I forgot to ask...
Should I stop the Larium? Will I get a better result if I take it or stop it?
I highly recommend anybody on here who has been extremely, extremely sick - even for a Lymie - to PUSH for a malaria test. I even saw an ID doc during all this. He didn't run a single additional test on me either.
I wonder if this is why I have problems with high iron foods?
Also, should I start eating high iron foods to increase my red blood cells so that whatever the little buggers are, they start to proliferate again???
I have been avoiding all iron. In fact, an iron pill gave me the WORST diarrhea through all of this.
Posted by nan (Member # 63) on :
Both malaria and babesiosis are protozoan diseases and invade red blood cells. It takes a trained eye to look at a blood smear and tell the difference between the two..they look so similar.
Sounds like you are being treated for Babs. Do you take anything other than the Larium? (some docs have stopped using that drug because of psychiatric side-effects)
Clindamycin and Quinine or atavaquone (Mepron) and zithromoax are also treatments.
Causes More than 100 species of Babesia exist, but only a small number of species are known to be responsible for the majority of symptomatic disease. The causative agent of babesiosis varies according to geographic region.
In the United States, human infection with Babesia species is primarily due to Babesia microti, found mostly in northeastern and midwestern states. A few cases have been reported in Missouri, California, and Washington and are found to be caused by Babesia-like agents named after their geographic location, MO1 (Missouri), CA-1 (California), and WA-1 (Washington).
Posted by tailz (Member # 10014) on :
I am being treated for babs with Larium, but I never tested positive for it. That's why I begged my doc to check me for malaria - I have every symptom of malaria, though I've been avoiding iron-rich foods to keep my symptoms at bay.
I don't think this equivocal result has anything to do with a trained eye - I think I have malaria, not babs.
Seriously, if many on here are on meds for babs and never tested positive for babs but are getting better on their meds, we'd have no idea if there was a malaria epidemic in the US because doctors don't even consider it. They think it isn't in the US, and I'm living proof it IS.
I think I have malaria. And I am having severe psychiatric symptoms on the Larium, but I need to appeal to my insurance for the mepron or malarone. Do I need to be on two meds simultaneously to kick this?
Posted by cantgiveupyet (Member # 8165) on :
wow tailz, this is very interesting...i might have to ask to have this test done.
Posted by tailz (Member # 10014) on :
I'll tell you this - I was looking at pics of me before I cut like ALL iron out of my diet.
My face - it looked like a corpse's - you could see the outline of every bone in my face - I looked SKELETAL - like I belonged in a morgue. I looked like some of those starving children - I'm not exaggerating either. Wish I could put the pics on this page.
The weight was coming off of me so fast, even with 4 to 6 meals a day. I couldn't even take my temp - I was too weak hopping from doctor to doctor.
I don't know what 'type' I have, but what I was experiencing (and still do) was HELLISH. I even went from screaming 'infection' to my doctors to screaming 'cancer' at them. I looked like and felt like I was dying.
And I DO have it. I started the Larium, so if this next test is 'negative', I will NEVER believe that.
cantgiveupyet - YES! GET TESTED! Your symptoms seem like mine on here - even more severe than for most Lymies.
You also can walk around with asymptomatic malaria, too. So don't put it off. My doc would have never run this test on me - I MADE him.
Posted by merrygirl (Member # 12041) on :
This is an interesting topic. I test neg for babs, but have high fevers. Yesterday it was 104 and I felt like death, with nausea and vomiting, drenching sweats. I am not saying I have malaria but it is an interesting topic. I see my ID duck today we will see how that goes.
Posted by merrygirl (Member # 12041) on :
P. vivax and P. ovale that has been sitting in EDTA for more than half-an-hour before the blood film is made will look very similar in appearance to P. malariae, which is an important reason to warn the laboratory immediately when the blood sample is drawn so they can process the sample as soon as it arrives.
Blood films are preferably must be made within half-an-hour of the blood being drawn and must certainly be made within an hour of the blood being drawn
Like this will happen at any lab around here...
Posted by Jellybelly (Member # 7142) on :
Hey Tailz, this is interesting and I have never actually heard of anyone other then myself that LOOKED like death. I looked like an anorexic with cancer after chemo. I know I was dieing and I don't think I had but a few years left and I was only in my 30s.
I don't look at all like that anymore and I am probaably 30 lbs heavier. I know what I have done to get well, but I do not understand "why" it worked entirely. I have been in about a 85-90% remission for a good 5 years. I feel better then I have most of my life and I am 50 now.
The iron thing doesn't and hasn't ever been an issue for me, but babs is highly suspect as at least one of my coinfections even though my one and only test was negative.
I hope that this new info you have received possibly leads to your regaining your health.
Posted by tailz (Member # 10014) on :
I don't know - I think I have it.
My 'nervousness' even as a kid was hellish. I mean, teachers would write 'calm down' when they'd grade my speeches - I would shake so badly. I thought it was just EXTREME shyness, but heck, I don't know now.
Also, mosquitos liked my blood. I shared a bed with my sister, and it was always me with the 3 or 4 inch welted bites.
I would imagine somehow mosquitos would 'know' who to bite to continue their life cycle. I mean, aren't their eggs floating around in my blood that need to go somewhere? Or larva? I don't know - I can't think right now.
merrygirl - Oh my God - PLEASE get tested! Don't let your doc tell you there is no malaria in the US!
But the thing is - if I go to Quest (and most labs), it will sit around for a half hour - the main lab is in Horsham, and I'm more than a half hour away. I used to work for Omega, and though we drew the blood specimens and had to spin serum samples down, all we had to do with the lavendar tops was to refrigerate them.
Do you think I need to wait until Monday or Tuesday to get this redrawn? Will my being on Larium mess this up? I stopped it because I want my positive so they don't give me a hard time getting antibiotics. I only took 4 doses so far (2 days worth total).
I'm going to wait to start my minocycline, too, now.
But I called Quest. Apparently, they 'set up' malaria slides Monday through Friday. I don't know though if it will be read the day I get it drawn. It would be if the doc marked it 'stat'.
Please let me know what you think. If I keep sweating like this, I will need a new futon mattress to go with my sodium-saturated hair from sweating like this for like 3 years.
I also had horrendous side effects on Larium - paranoia, depression, anxiety, horrible rages. I need to mail in a request for an appeal. Nice, huh???
By the way, merrygirl, I think vomiting IS a symptom of certain strains of malaria, though that is one symptom I have not had myself. Please get tested. I have all your other symptoms though.
I had a temp maybe of 101 point something, though I hardly ever take my temp, so who knows how high it goes. I don't think it has been that high too often, simply because I sweat so badly, that my body probably cools down pretty rapidly.
I also was severely anemic following my hysterectomy, but they never did find a reason for it. I was fit to be tied my anxiety was so bad.
Posted by tailz (Member # 10014) on :
merrygirl - please let me know if he runs one on you. I'm worried now.
The last 3 years of my life have been HELLISH. I smell of BO sometimes just getting out of the shower, because I even sweat in there.
Posted by CaliforniaLyme (Member # 7136) on :
I also have a history of recurrent malaria and it was VERY different- Tracy- it was like your experience very much so*)!*)!
Malaria is a febrile illness characterised by fever and related symptoms. However it is very important to remember that malaria is not a simple disease of fever, chills and rigors. In fact, in a malarious area, it can present with such varied and dramatic manifestations that malaria may have to be considered as a differential diagnosis for almost all the clinical problems! Malaria is a great imitator and trickster, particularly in areas where it is endemic.
Malaria is ALSO called, like Lyme & Syphilis before it, The Great Imitator, because in some folks it can manifest in myriad ways...
HOWEVER, I htink it far more likely you have seronegative Babs!!!!!!!!!!!!!!!!!!!
because Babs can be like that too!!!!
and MOSt of the time malaria is just obvious, like it was with me, and very different-
Posted by merrygirl (Member # 12041) on :
I will talk to my ID doc today. I know he is going to look at me like I am crazy! LOL
Well the lab I go to has a pick up at certain times per day. In my experience in animal medicine is that the lab guy comes first thing in the am like 8 am, then 12n, then 10pm. So our blood sits in fridge for hours before it gets picked up.
(But our docs will read blood smears right away if they need them)
Then the lab guy has to stop at multiple facilities to pick up samples and off to a plane or an hour away to quest.
Unless your doc has a microscope and can make a slide in the clinic, According to the wilkepedia article the results may be inaccurate.
I was thinking of making my own blood smear and bringing it to work to read. Do you think the buggers would come out of a finger stick?
Maybe your doc or lab tech can make a blood smear there and then send it of to pathology or microbiologist? Thats what I would ask for. I dont know anything about malaria so I could be wrong...
Posted by merrygirl (Member # 12041) on :
I think I have babs....But test neg
Posted by cactus (Member # 7347) on :
Hi all,
I've wondered if malaria is a possibility also (due to extensive travel & bug bites outside of the US), so this is really interesting.
It is certainly possible that malaria is in the US (all it takes is one person visiting an endemic area, then hopping on a plane to the the States and being bitten...), in fact I believe it has been documented in areas close to NYC.
There have also been some fascinating studies that show that people with malaria are more attractive to mosquitoes than people without malaria - so you may be onto something, Tailz.
If you search through some of the old Mepron Buddies and Babs Buddies threads, there are a few here who may have had malaria as well. Liz28 is one who comes to mind (hope it's ok to mention your name, Liz!)... You might do a search and see what comes up here on Lymenet.
Hoping we all feel better soon, whatever the cause, Cactus
Posted by tailz (Member # 10014) on :
jellybelly - I missed your post last time. Yes! I looked like an anorexic CHEMO patient last year around this time. I kept looking at myself in the mirror - something was different.
The scale was misleading though - though I've weighed 92 lbs in the past, I didn't realize at first that it all seemed to come off my face and upper body (arms, ribs, chest). I think this is what happens with liver disease - upper body weight loss. I read this somewhere - fatty liver. I had a cat who died of fatty liver, too.
But my weight dropped further still - all the way down to 88 lbs. But why don't you get tested for malaria, too?
Sarah - I look at it this way - I have been negative for babesia - tested numerous times by two different labs. Both labs looked at the slide and said, "Nope - this is not babesia."
I came back equivocal for malaria though - which means they saw something on the slide this time, though they can't say it is or is not malaria.
What that says to me is I probably do not have babesia, but I may have something similar - malaria.
I'm leaning towards malaria, quite honestly.
merrygirl - That's how we did it when I worked at Omega, too - couriers.
And that's a great idea - to make my own slide. Actually, I'd get my sister to make one, but she will give me the usual excuse - she'll lose her job. I was actually begging her to draw my blood and just start running tests on it when all this was going on.
I'm not sure if this would show in a fingerstick. I wish I had the slide and a microscope to check this out.
cactus - I have NO doubt that malaria is in this country. And you're right - if I'm sitting here with malaria, I'm not the first, and I'm not the last case of it. I have some fresh mosquito bites on me right now, and all it takes is one infected person to set the ball in motion.
My symptoms though seem even more severe than most Lymies. I will have to PM Liz.
And yes, mosquitos would often choose me over my sister. Maybe they can 'smell' the parasites reproducing in my liver?
Posted by Tincup (Member # 5829) on :
Pennsylvania has a problem.
Years ago they.. like some places in other states I've heard about... didn't want to have babesiosis is THEIR back yard.
Sooooooooooooooo.. the health departments went to doctors who were testing babesiosis patients.. and AFTER they were treated for babesiosis the doctors had to call patients back in and draw blood for the health department to play with at their lab.
The health dept then took blood from the treated patients.. didn't find babesiosis cause the patients had been treated... DUH... and declared their state "Babesiosis free"!
PA "officials" actually UNreported Babesiosis cases and renamed it Malaria.
They also diagnose many Lyme cases as "spider bites" too... so I don't think they have a clue sometimes.
But the babesiosis story is shamefully what happened... so do be aware.
Posted by lymednva (Member # 9098) on :
It is my understanding that it is common for people with Babs to test negative. I was shocked that I tested positive.
In my opinion it is far more likely that you have Babs than Malaria.
Posted by tailz (Member # 10014) on :
tincup - Whatever I test positive for, nobody is playing with my blood samples UNLESS I'm involved in the reporting of what is found.
I'm worried I won't even test equivocal now though because I took a couple of days worth of Larium - it was written for 1/2 pill twice daily, and I took a total of 4 doses. I even WAITED to start the medication right away, just in case they lost my blood sample or something.
I believe though that they do alter epidemiology results, just so that it doesn't have some sort of an economic impact on the area involved. The babs issue doesn't surprise me at all.
But I still lean towards malaria over babesia.
I mean, for one thing, malaria has been found in the US - that's undisputed. So if those 50 cases of people infected with malaria (I'm guessing here - a low number) are bitten again by a mosquito, boom - somebody else gets malaria, too. And the cycle continues.
I'm even more convinced that this is some type of malaria over babesia because all babs tests have come back definitively negative, whereas my first malaria test is uncertain - equivocal.
Add that to the fact that cactus sent me a link which would suggest that people carrying malaria ARE INDEED more attractive to mosquitos than those without the bug, and nobody is going to tell me I have babs and not malaria. I STILL am the preferred mosquito 'meal' to this day.
Think about it - OF COURSE they are going to tell you that you have babs but are just sero-negative for it. Think of what would happen if all these babs cases were reported as 'malaria' instead?
The world would go into a panic, and the government and this healthcare system would have to do something about the spread of this disease - something they don't even want to do for Lyme Disease.
Plus, I have to wonder if we ever really did get rid of the malaria that was present in the early 1900's, and whether some of this is congenital malaria, perhaps contracted by our fathers in WWII and then passed onto us baby-boomers. Do you think the government is going to take responsibility for that?
I worry that some of you might underestimate my concerns here, feeling reassured that 'you probably have babesia, but it's hard to pull a positive on that one', when a simple malaria test would explain both your symptoms and the fact that you remain negative for babs.
Finally, is the malaria test that just came back equivocal a numeric value, or the microscopic comparison of what they saw on my slide to a control?
It's always possible I have some new form of malaria, too. How would they figure that out though?
Posted by tailz (Member # 10014) on :
I forgot - if this IS a new strain of malaria, I'm going to have to figure out which part of my name I want to be a 'disease', too;)
Posted by cactus (Member # 7347) on :
Hi guys, here's a link to the article finding that mosquitoes find people with malaria tastier than people with out malaria:
I sent it to tailz by pm because I didn't know how to do a tiny url and didn't want to make the thread go wide. Needed some assistance in the tinyurl department.
Since babs is so similar to malaria, it's possible that those of us with babs are also quite attractive to mosquitoes and are also considered a delicacy in the mosquito world, who knows?
Regardless, for whatever reason, my own babsy body seems to make great mosquito repellent for anyone camping with me - since the mosquitoes invariably choose me to chew on!
I have tested pos for babs microti and WA-1 (or whatever it's called now), but have not been tested for malaria despite lots of travel to areas where it could be possible.
Posted by tailz (Member # 10014) on :
cactus - Excellent link! I think it's possible that any mosquito-borne parasite could make certain individuals taste especially yummy. Maybe even Lyme factors in here somehow?
I guess I'm most concerned that this really is malaria though because I really did look skeletal throughout this, and I really did think I was dying. I was only in my early 40's and people were treating me like I was elderly, asking me if I needed help carrying things to my car.
I wouldn't have given myself even another 6 months to live. Maybe not even 3.
I'm bummed out though - if my doc didn't get my message by the time he left his office today, my malaria test won't get to be drawn until TWO Mondays or Tuesdays from now at the earliest, because he's not in Fridays and he goes on vacation all next week.
I called and asked them to mail the slip, but even if he got my message, mail here is slow, so I may have to wait until the following week to have it redrawn anyway, unless it gets here by Tuesday early afternoon.
I'm asking for a tularemia test, too, since I took care of a few nests of bunnies, and they had fleas.
I'm just bummed here. I don't want to take the Larium anymore, or malarone (if it gets approved), or even the minocycline I got my doc to call in (since doxy can prevent malaria) UNTIL I know for sure what I'm killing here.
I worry that if I do have malaria, but these meds suppress it enough for me to test negative, I'll have trouble getting treated for this down the road.
Posted by Lymetoo (Member # 743) on :
Tailz....Why don't you try clindamycin/quinine for the babs? and throw in some artemisinin.... Forget the Larium!
Posted by tailz (Member # 10014) on :
I am forgetting the Larium - it's horrible. I can't tolerate it. The psych symptoms are terrible.
Will insurance companies deny the clindamycin and quinine (and art) like they are denying malarone and mepron?
I have a letter sitting here right now, which I've yet to mail, to request an appeal for another drug to treat this - specifically malarone and mepron.
Should I request your combo in the letter INSTEAD of malarone and mepron? Does this combo work better?
Posted by Vermont_Lymie (Member # 9780) on :
Tailz,
So sorry to hear that the insurance company is giving you a hard time on malarone. That is what I would recommend. I have been taking malarone for almost 5 months and I think it is an effective treatment for babs (I hope!!).
Can you fight them on it? I realize that is not easy when you are sick.
I too would bet you have babs before malaria. I remember hearing that a couple of folks were found to have malaria in the northeast in the last few years, but mainly those folks traveled had to malaria areas.
Babesia sure is alot more common here. Take care and let me know if you have any malarone questions.
Posted by tailz (Member # 10014) on :
VermontLymie - I wrote a letter today to my insurance, but I've yet to mail it.
I really want to get another malaria test done before I restart any meds here, but there could be a major delay if my doc didn't get the info off he needed today before he leaves on vacation.
I had a lot of trouble on the Larium. I only took it for 2 days, and it took me 4 days to even feel slightly less psycho.
But I still worry about malaria. Malaria doesn't just hitch a ride here on people who have traveled outside of the US and then die quietly.
It continues to live out its life cycle here in the US, which means many more are infected than those few here in the northeast that were 'caught' due to travel.
Posted by Tincup (Member # 5829) on :
Big T...
You said.. "Add that to the fact that cactus sent me a link which would suggest that people carrying malaria ARE INDEED more attractive to mosquitos than those without the bug, and nobody is going to tell me I have babs and not malaria. I STILL am the preferred mosquito 'meal' to this day."
Actually I've had family members who had malaria.
Mosquitoes would swarm around them and NOT bite!
Keep in mind there are at least 21 strains of babesiosis and only a couple are tested for with labs we use.
Keep in mind the organisms are so similar the experts have trouble deciding what is what.
Keep in mind, it really doesn't matter what it is called. Your main goal is to fix it.
There is no universal cure for all people who have been infected with either.
So maybe focus on the cure and what makes you feel better ... since you know the organisms are similar... rather than hold off meds to see if someone eventually MIGHT think it important enough to be listening to you and ordering every test you can think of under the sun. That MUST be frustrating to you.
I want to see you BETTER... not so much wasting time trying to determine obscure details that may never be able to be confirmed either way.
Feel better soon!
Posted by tailz (Member # 10014) on :
But I'm already having my first medication problem - actually, my second - because they wouldn't fill my entire zithromax prescription either.
Plus, if I have some creepy new strain of malaria, then I want them to identify it. Or if it is babesia - same thing. I'd rather know which kind it is than to be denied antibiotics down the road here when I'm skeletal again because my result was negative.
My daughter has whatever I have, too, and she may not be as lucky down the road.
These bugs already damaged me. I mean, 2 years ago I would have taken the cure, regardless of whether they knew 'why'.
But if this really IS malaria, I need to know. If this test had been negative, I would not be concerned. But equivocal? I need to follow through or I will kick myself one day.
I wonder though - could those mosquitos that swarmed but didn't bite have been males? Only the females bite.
Posted by Vanilla (Member # 11155) on :
I too am mosquito bait but ticks are also fond of me and as we all know skinks too.
I tested positive for Babesia WA1 and then my test after that was negative while on Mepron and then my third test was reactive to Babesia Microti. I know the different types of babesia can cross test.
I have traveled to many places over a period of years where this is Malaria like the Amazon and Indonesia. I have mentioned the fact that I thought I could have Malaria to my LLMD but he said no but of course I have never been tested for it. It makes one wonder.
Posted by Tincup (Member # 5829) on :
T said..
"Plus, if I have some creepy new strain of malaria, then I want them to identify it. Or if it is babesia - same thing."
That is the problem. There are NO tests available for humans for the 20 some KNOWN existing strains of babesia. None.. nodda. No lab is doing them.
And it might takes YEARS before anyone can develop a test to be used in humans for any of the Babesia strains.
And it might take years before there is a test that is fool proof and doesn't react... or cross react... with similar organisms.
My bet is.. most of us who are chronically ill have a number of other infections that haven't been discovered yet. One researcher has several strains sitting as we speak.. that have been identified but not named yet. No commercial test is available for those strains either.
Just like about 10 years ago when they never tested for coinfections at all.
Or 30 years ago they didn't test for Lyme. So we have come a long way... but how much longer will we have to wait before a GOOD Lyme test is developed? Nobody knows. And even if it does hit the market.. will we be assured it will detect 100 percent of the cases?
Nah.
Sorry!
My theory is... after years of dealing with this JUNK...
If it feels good.. do it!
Posted by tailz (Member # 10014) on :
Vanilla, I'd get tested. Without routinely testing for malaria, how would they ever know if it was epidemic?
If even 20 people who have traveled abroad are sitting here in the states with malaria, it's likely that more people have it.
I know that there will shortly be an epidemic in whatever I'm carrying (malaria, strains of babesia), simply because I was bitten numerous times just this summer alone.
If I've had this as long as I think I have, holy cow, that's just too scary.
tincup - But what if this IS malaria? Shouldn't we all be alerted?
I know that it's possible I have some freaky new (unidentifiable) strain of babesia, but until I get a 'negative' on my malaria, I have to get my blood redrawn before I go ahead with the antibiotics.
Also, I want to wait for my malarone to be approved anyway because I pretty much went psycho on Larium.
I'm hoping I get my lab slip this coming week. I'll make a deal here - if I get it on Wednesday, I'll still go have it drawn and won't wait until the following Monday. How's that?
Posted by Tincup (Member # 5829) on :
T said.."I'm hoping I get my lab slip this coming week. I'll make a deal here - if I get it on Wednesday, I'll still go have it drawn and won't wait until the following Monday. How's that?"
OK.. deal! I just don't want you to wait too long. Only want the best for you and to not delay your treatment too long.
Good for you!
Posted by pattilynn (Member # 8065) on :
I've never heard of a case of malaria in the US. I think the result is really a negative or a lab error.
Posted by Geneal (Member # 10375) on :
I've read this post. Then read it again.
I am slightly confused here (nothing new I'm sure).
Wouldn't the treatment for babesia cover malaria?
Or am I just spitting in the wind?
Tailz,
I could rake myself over the coals over every small detail.
It is like having a puzzle made up of thousands and thousands of pieces.
Some pieces I can identify and place into the puzzle.
Some pieces haven't been found yet. Can't place those.
Some pieces could go in one or another spot.
I agree with TinCup.
If I questioned every part or facet of this disease I'd go crazy.
I will never know exactly how and when I contracted it.
I will never know if I gave it to my children.
I tested negative for babs yet herx like crazy on babs meds.
It is like a dog chasing it's tail. I can never catch mine.
Better to focus on what I can do to treat my symptoms and get well.
Get the malaria test done again.
Get treated for babesia or malaria....just get treated.
Try to focus on what you can do to get better.
Try not to sweat the details so much.
Keep your eye on the prize of remission or getting well.
A negative babesia test means nothing.....
Except a waste of money and time.
Take care of yourself.
Hugs,
Geneal
Posted by tailz (Member # 10014) on :
tincup - okay, it's a deal;)
It could be I only have some strain of babs, but I'm still concerned that all my babs have been negative (as opposed to equivocal), whereas my malaria was equivocal (as opposed to negative).
Maybe I have some 'new and improved' strain of malaria??? That would be my luck.
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