Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
HELP!!!!!!!!! BEFORE I KILL MY HUSBAND!
I have every clinical symptom of Babesiosis but my test was negative. I have no doubt I have it. My LLMD already tried to treat me for it, but my liver went out of whack so he dropped it for now and gave me Ceftin and Biaxin for the time being.
I have severe night sweats, checked hormones and they are all normal, no indications of menopause. HIV negative. No other symptoms of lymphoma (no weight loss, a key symptom.)
With these things ruled out, it pretty much leaves Babs. I am WAY off balance, dizzy, have the bumpsies and the dropsies all the time, loud ringing in my ears, extreme fatigue, and of course those lovely night sweats.
Here's the question; I've had lyme disease for 3 1/2 years. The babs symptoms have been for maybe a little over a year.
My husband, who is always the Doubting Thomas for some unexplicible reason, continues on his quest for other explanations.
If I just ate better, exercised more, I must be in menopause (till the recent bloodwork ruled that one out), surely I have diabetes (those tests were negative), it must be mold sickness from our window air conditioners (he thoroughly bleaches the filters each summer), (and wouldn't everyone get that from their window air conditioners??)
Needless to say, it is frustrating and down right angering to have to deal with his alternative theories every day. His test for Lyme, Babs, and Bart were all off the charts, so the fact that I have some negative tests sends him into a whirlwind of doubt.
The big question now is, if I have Babs, why would the symptoms show up two years or more after my Lyme disease did?
Any answers to that one? My only answer is that it could have lain dormant and then come out....but I'd love some help with this , or any ideas on how to SHUT HIM UP.
I just can't understand why he expends so much time and energy looking for other explanantions. By the way, I already went through this with him about himself for about the last five years until finally he got tested and then could NOT doubt it anymore. He has all three, no question about it.
Thanks!!!!
Tracy
PS It is very angering because I can't help but think of all the things he could be doing instead of searching the internet for these elusive answers...like doing the laundry, paying the bills, etc............
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
The way it was explained to me by my LLMD is that
my immune system is so overwelmed with the
infections. It is taking time for my system to
produce the antibodies that are picked up on a
blood test.
All of us are different, all of us
respond different to treatments, we may have one
symptom but not another one. Our immune systems
respond different.
Also, in my opinion we need better tests.
Posts: 111 | From York, PA | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Tracy,
Igenex Fish only tests for two known strains of babesia.
That being said I had a negative Fish.
Yet, like you had tons of babesia symptoms.
I herx like crazy on babesia meds.
My neighbor has treated Lyme straight for 10 months.
No real babesia symptoms initially.
The last two months she started with night sweats, severe headaches and fatigue, etc.
I think as you get one bacterial load down, other things emerge.
Like babesia symptoms.
If your LLMD thinks you may have it...(I was clinically diagnosed with babesia),
Then I would listen to him/her.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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jamescase20
Unregistered
posted
Same deal here, I tx'ed for lyme, then bart, then babs as I got very ill after lyme and bart tx. I discovered low fevers starting up, horrible headaches only on right side, and horrible shoulder pain, then I started malerone and totally got sick, of course though the shoulder pain greatly went down after just a day or so, and same with the headaches, I am 5 days in to babs tx, and quite sick..I think its suggestive of babs. And several I talked to who have babs concerded with me. Sorry spelling off, pretty fried here u know.
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posted
Babs can really hide itself and many good docotrs even miss it. I was treated for Lyme for 3 years before they finally found the Babesia (reason I wasn't getting any better). Finally the FSH thru Igenex picked it up and then even Quest's IGM test. It has been a logn road of 2 more years of treatment for the Babs- and still I don't think it's gone. To top things off my kids go to the best pediatric doc in the US for Lyme and the Babs even stumped him. It came back in my one child after a 1.5 year of remission (unless he got bit again). ANd finally after 2 years it was found in my other 2 kids. SO if you have ANY symptoms of Babs and also have Lyme I highly recommend being treated for it for a minimum or 4-5 months! Remember one red blood cell lives for 120 days and thats where it is!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
Agree wtih advice from previous folks. Further, my LLMD (who loves to test, test, test) said that he has treated people for babs based on clinical symptoms when they have tested negative for babs and sure enough, after some treatment and follow-up tests, it turns up positive.
I've tested negative for babesia but have been treating for 6 weeks now. No major improvements/herxes for me so we'll see.
Posts: 561 | From mass | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Just food for thought.
If you have Lyme disease and test negative for five years,
The blood bank will take your blood.
If you have been diagnosed with babesia.....You can never donate again.
Of course all of us with Lyme should never donate blood,
But it is awfully telling that babesia being "cured" is not a sure thing..
At least in my very humble opinion.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tailz
Unregistered
posted
That right there tells me that men don't suffer like women do with Lyme. He tests positive for all of these, and you're just not taking care of yourself?
I'll bet I have lymphoma - weight loss was my number one symptom, along with enlarged lymph nodes in my groin.
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
johnnyb, I'm concerned with what you said about the babs becoming resistant if you only treat with art.
My Fry slide was negative and I don't have classic babs symptoms--no night sweats or temps.
My LLMD is interpreting the slide herself. Says she sees babs in my cells and cells are odd shaped and my red cell count is down.
So I'm supposed to start art. I'm calling today to see if I can order from her.
Now I'm worried that if I do have it, it will become resistatnt.
But, if I don't have babs, I guess it will do no harm.
I'm thinking she's doing only art because I don't have the definitive answer with testing and symptoms aren't classical.
I need to figure out why I'm anemic because I have no stamina, but not sure babs is the reason.
She's also ordered B-12 shots. Is this a usual treatment for babs?
What to do!
Posts: 1297 | From USA | Registered: Dec 2002
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Marz--I think LLMDs starting with just art is common.....they do it to see if it provokes a response/herx. My LLMD said 2-3 weeks. Beyond that, I don't think you're supposed to go solo with just art--that's when you bring in the big guns!
Just passing on my LLMDs opinions and what I've read....
Posts: 3528 | From US | Registered: Apr 2007
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Thanks CD57! This eases my mind about starting art alone. I'll let her know if I get a strong reaction and ask if I need abx if I do.
Has anyone with babs had a low red blood cell count and a high mean corpuscular hemoglobin (MCH) with their blood count?
Posts: 1297 | From USA | Registered: Dec 2002
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thanks everyone, I am still a little stumped on the fact that I have had lyme for 3 1/2 years, but babs SYMPTOMS just started about a year ago. This is where my husband is getting stuck.
I know the testing can be very inaccurate, and all that, but what about this issue with the symptoms? I have only had the night sweats for a year or so.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
My LLMD had me on art. for 5 months before starting me on mepron/zith, so I am really confused!!!!! I had an immediate herx from the art- I felt muscle pain all over by the 2nd pill, and that whole first week I had nightsweats constantly, then I started feeling better and never did herx on it again. Maybe it isn't even doing anything for me anymore. Where is this info. that art. alone makes the babesia resistant to it?
Posts: 871 | From NJ | Registered: Mar 2007
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jamescase20
Unregistered
posted
Now you know why I have been self treating! I was sick for 2mo on lyme and bart tx. And sure enough, i started quinine and suddenly get some improvment, and I think its now after just a few day resistent to it. Malerone now and tired and sick...but I feel like I am clearing something horrible out of my body.
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Bugg
Frequent Contributor (1K+ posts)
Member # 8095
posted
Maureen--
I see that you've been asking about the efficacy of a monotherapy of Artemisinin. I don't know about articles pertaining to babesia. However, there are a number of articles (some in PubMed) which discuss how malaria (a similar protozoa) would recrudesce or relapse if only using Artemisinin. The articles say you need combination therapy to eradicate this difficult protozoa. I would think the same would apply to resistant babs...
Posts: 1155 | From Southeast | Registered: Oct 2005
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posted
Thank Bugg- I am doing the art/mepron/zith combo now, but was wondering if there was anything that said that art. alone would cause the babs to be resistant to it, since my LLMD had me on this alone for 5 months. At that rate, then there would be no point in me continuing to take it with the mepron/zith now.
Posts: 871 | From NJ | Registered: Mar 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Ok. I eat crow.
I have Hepatitis B. Blake was right to keep searching for other answers.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
PLEASE READ ALL ABOVE- AND QUIT BLAMING EVERY HEALTH ISSUE ON LYME DISEASE OR CO-INFECTIONS.
WIFE ABOVE JUST TESTED POSITIVE FOR ACTIVE HEP B-INFECTION.
She was also so pale this week the dentist asked her if she was Mexican. She is Scottish and Italian... fatigue, headaches, muscle pain and other problems exist for Hep B as well.
Her Herx's also seem to last weeks on end and seem to coinside with taking abx. I think it is possible that the abx are making her sicker, not better. For all this we will keep looking and find the right balance of health and treatment.
NOT that Lyme disease is not a powerful and devisating illness (I know because I have Bartef, Babs and Lyme), but before blaming all possible problems on LYME- do the smart thing and RULE out other possible causes and infections.
Im not down on Lyme, but you gotta check out other possible issues-- along with Lyme and co-infections if your not feeling well.
For now I will accept the label of lyme basher and bad husband, but in the end I belive my interest in my wifes health and pursuit of diferential dx for her health is worth it.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
I tested for Babesia when I first did my IGENEX lab work and it was negative. On my last visit Dr E told me I had all the symptoms of babesia. She said there were different types. We tested with IGENEX and I tested positive for Babesia Duncani. I didnt originally test for that because Im in the North East and it was typically found in the west. So maybe its possible that different strains arent being checked and you could possibly be positive??
Posts: 12 | From Morris County NJ | Registered: May 2007
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Well now. Hepatitis B.
I was diagnosed with hepatitis A when I was 17.
A very long time ago.
However, I didn't see you complain of severe nausea,
Non-stop vomiting, dark urine (almost black) or possible yellow in the eyes.
I didn't get treatment, just IV fluids until body was able to get
Food and drink again. I almost died of dehydration.
I am glad you found that out.
Have they taken you off all your meds for right now?
It took me weeks to recover....then a year of kidney and bladder problems...
Prone to all types of infections over and over.
Plus no drinking alcohol. Yeah, I am old. The legal drinking age
Back then was 18. That was tough watching my friends go out.
Hang in there. Hope you feel better soon.
Lyme and Hepatitis. Yuck!
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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