I didn't mention it, but I was diagnosed with fibromyalgia and had the "fibro fog" along with pain and fatigue.
Definitely affected me cognitively. I still have word retrieval issues that showed up when I became ill.
Hmmm...so you've not heard of Babs hiding in a few red blood cells like malaria? Darn.
When my mom, RN, saw how it infects red blood cells like malaria, chronic was her first thought.
Apparently malaria can hide in blood cells under the diagnostic radar.
Have you heard of many others who "got Babs again"?
I've not had any tick bites this year.
Carol
Posts: 24 | From Columbus, OH area | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
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posted
hconn, may have more info than I... but I did think babs could become chronic and persistent if untreated or under-treated.
I have read here that in many people babs can lie dormant in our liver, and relapse when our immune system takes a major hit. This is why if we have ever had babs, we may not donate blood.
Maybe someone with a better brain for research will come along and post some links soon.
My LLMD thinks I contracted babs and company 20 + years ago, and I was only diagnosed in 2005. Over the 20+ years without the right diagnosis, I had remitting and relapsing periods. Before getting diagnosed, I had a ton of misdiagnoses including fibro and MS.
Even after treating babs, I have relapsed repeatedly. I think my last 6 months on Mepron and Zith knocked it out. If you were only treated for 4 weeks, that seems like a short course.
Also, if you have babs, it is not unlikely that you have other co-infections and Lyme, too. The testing is unreliable.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Hoosiers51
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posted
CHeart,
My symptoms sound a lot like yours. How were you diagnosed with Babesiosis?
People can get it without Lyme, but I believe it is usually people with compromised immunity, such as someone over 70 living in a nursing home. Those people have been known to test positive, but they usually don't show symptoms. Someone else can correct me if I'm wrong.
The fact that you have symptoms that have lasted so long leads me to believe at some point you came in contact with a tick that could have given it to you. I think that if you got it from a tick, you probably got Lyme too.
What you said about Babesia hiding in the red blood cells makes sense to me. I believe it can be "chronic."
Keep in mind that just because you tested negative on a Lyme test doesn't mean you don't have it. I tested negative many many times before testing positive. I also have babesia and bartonella. Having Lyme in addition to babesia could explain why you have failed to get better.
I think you should see a doctor that specializes in Lyme (there are good resources on this site) and have them evaluate your symptoms to let you know if they think you have Lyme as well.
I would think that for you the diagnosis of Lyme could be made without a positive blood test because you already have babesia and they normally go together. Many don't recall finding a tick on them....so keep that in mind.
Hope that doesn't scare you....but it could be good because knowing what you have will help you get better.
So have you been ill for that entire time? If so, that in itself would lead me to believe something is obviously chronic!
(I have been ill 7 years, so I understand.....)
Best of luck!
PS---as you will discover on this site, many recommend Igenex labs for testing for tick infections. They have a website.
[ 14. July 2008, 01:52 PM: Message edited by: Hoosiers51 ]
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Yes, Cactus, now that I've done research this time, 4 weeks seemed wa-ay too short to really knock it out, after ~2 years of constant pain.
Hoosiers51, Yes, I've been sick this whole time.
The pain went away, but still lots of fatigue and illness and many food intolerances.
If I do very much I get "sick" with exhaustion, can't go out in the evenings, sleep 10 hours min, etc.
This past year I was sick with H-Pylori, parasites, shigella, bleeding ulcer caused by HP, flu, whooping cough...nonstop 6 months.
Ended up with even more food intolerances diagnosed in Jan. and then even more diagnosed 11 days ago. Since January lost a full size.
Obviously I pick up any bug within a mile of me.
My diagnosis has not been a standard one, but this doc (M.D. and homeopath) has helped me tremendously.
My PCP and specialists said they couldn't do anything. I would always live in pain. Fibro was the dx.
This doc and his MSA diagnostic machine always figures out whats wrong and helps.
I was worried this time for 2 reasons: He was stumped as to why after all we've done I'm not healthy yet, and because it was babesiosis "again."
None of it added up, so I immediately started researching.
I'm sure he'll work with an LLMD. He's always willing to learn.
He's the kind of doc people find after suffering for years, and he has helped many, many people.
I'm on the hunt now with some references from Seeking Doc forum.
I received my IGenex kit. I'm actually considering doing some testing before I wait for an LLMD appointment, since that could take awhile.
Any suggestions on what to ask my doc to order?
I was going to do complete Babs, but I was already wondering about co-Lymes, just as you have mentioned.
I'd like to know now what it shows in case we do put it in "remission" or whatever.
Carol
Posts: 24 | From Columbus, OH area | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
It sounds like you are being proactive finding a doctor, etc, and that's wonderful.
It looks like you live in Ohio.....so in terms of what to order from Igenex, I don't know. I think they have a "west coast" and "east coast" panel, if my memory serves me properly. Keep in mind, there are supposedly "midwest" strains of babesia, so the Igenex may not pick up what you have. I know there is a strain specific to Missouri that a Dr. C in MO treats.
I would do "east coast" if I had to guess. I think it is worth doing though. You also have to keep in mind where you have lived. They also have a babesia FISH test that is highly recommended. I would definitely say do that. Very important test.
There are multiple Lyme options too. I am not very knowledgable about these, and I don't remember which ones I got.
Part of me though is worried your LLMD will have specific things he wants to look at, so maybe you should wait to send the Igenex out and let the LLMD order it. It is confusing. I hope others on this site can give you better advice......as far as the Lyme, other coinfections, etc....I don't know what to suggest to test for, so let's hope they chime in!
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I'm confused. How do you know you don't have lyme? Most people who have Babs have Lyme. Even a negative ELISA or Western Blot does not mean you're in the clear for Lyme, especially if you have Babs.
It's not Lymes, by the way, just Lyme.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
Yes, I know what you mean about waiting because the LLMD will have his/her own ideas about testing.
I'll only go ahead if it is going to be a long wait to get in.
I know the LLMD will not like how I was dx (MSA machine by MD/homeopath), so I just thought I'd try to get some "proof" before possible remission.
My mind just darts back and forth with ideas as I struggle to take in and understand all of this, and last week I could not get out of bed due to herxing.
As far as diagnosis, I did not realize at first that I probably have Lyme as well but do now.
My doc is not an LLMD, so he just would not know.
I'm just lucky he has helped me at all, since so many people go much longer than me with no help at all.
And I'm lucky that he is always willing to learn and will be willing to work with a specialist.
Carol
Posts: 24 | From Columbus, OH area | Registered: Jul 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
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Do you remember any tick bites?
Did your homeopath "test" you for Lyme and it came back negative?
Posts: 4590 | From Midwest | Registered: Jun 2008
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Yes I have had tick bites, no bulls-eye rash that I know of.
We moved to rural area ~ 8 yrs ago with ticks galore and a herd of deer in our woods and we walk the woods with the dogs.
Illness began ~6 yrs ago.
Correct, lyme not showing and has never shown the way this doc tests, only babesia.
Found the Dr. B protocol including testing to read and to give to my local doc.
Posts: 24 | From Columbus, OH area | Registered: Jul 2008
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cactus
Frequent Contributor (1K+ posts)
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posted
CHeart, like you, before I had an LLMD, I also tested positive only for babesia. It was the one clue that got me to an LLMD.
Turned out I had babs, WA-1, erlichia, bartonella, Lyme and a host of viruses. Your bout with H. Pylori is not uncommon in Lyme patients either - I have heard LLMDs say that it can be transmitted by ticks as well.
I hope, for you, that this will get you into a great LLMD's office, and that you will get all the answers you need to get healthy again.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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