posted
After two years of intense treatment for chronic neurological lyme disease (mostly Mepron, Minocycline, and Diflucan), I didn't feel that I was improving as much as I should have been. Only after I sought the opinion of another LLMD did I receive the diagnosis of a Babesia co-infection.
Needless to say, I am very upset, and still very much angry about this. My new doctor, just like other doctors, doesn't have a crystal ball, and even if he did, I don't think that he (or any other doctor worth his/her salt) would want to speculate very much about the future, and all of its variables. Still, I am curious if anyone else out there went through Lyme treatment without the discovery of Babesia, and what happened once it was discovered.
Many thanks, and may God bless each and every one of you out there.
Posts: 116 | From North Carolina | Registered: Apr 2011
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posted
If you have already treated some with mepron then the previous docs were at least treating for babesia clinically.
Hubby did not have a babesia titer test become positive until he had been sick for 10 years -- in treatment for 7 of those years. None of his docs thought to test for babesia duncani instead of babesia microti.
He just got a positive test for rocky mountain spotted fever after 11 years. He had never had fevers or rashes until this spring after we think he got rid of the bartonella which was suppressing his immune system.
It is only in the last 3 or 4 years that docs are starting to understand just how significant the coinfections are. Hubby saw the Dr B in 2003. At that time the standard treatment for bartonella or BLO was 1 month of levaquin. We went back for a follow-up appointment and the treatment had changed to 3 months of levaquin.
Years later it took about 2 1/2 years of combos of levaquin, factive and rifampin plus lots of herbs to finally get rid of the bartonella, BLO or mycoplasma or whatever the bug was that was seen on numerous bloodslides from both F lab and CLongen lab.
I would just be happy that you know now better how to target your treatment.
After 11 years of arguing with docs because hubby does not have a positive Western Blot -- he actually has a totally negative test with all bands negative from many different labs -- I have found that the docs who want to doubt everything still do not think he could have chronic babesia after all the malaria meds he has taken. So even positive tests will not convince someone that doesn't know or understand these diseases.
Hubby does have one positive PCR test from 10 years ago and of course now he has positive SPECT scans as well.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Thank you very much for your very detailed and timely response. I think you said it best when you mentioned that you would just be happy to have learned of the problem, and be in the process of treating it. Most of the time, I am able to be in that place, which is clearly a fantastic place to be. :-)
I am sorry to hear about the troubles that your husband has been through. 2, 10, or 20 years (or more!)....they are all WAY too much time for people to have to deal with this $##%.
Thanks again, and God bless. :-)
Posts: 116 | From North Carolina | Registered: Apr 2011
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posted
Hi, About 3 years ago I tested "maybe" for babesia, (my tick bite was 5 years ago). My doctor said it was such a low titer that it was really a negative and I didn't have it. I was new to all the lyme stuff at the time and very ill so unfortunately I didn't question him.
Fast forward 3 years and now I test positive for babesia and my symptoms are raging. I feel like I managed to knock the lyme back pretty significantly, which might be why the babesia is so bad right now.
Honestly, I'm very frustrated with myself and my doctor that I didn't start treatment for babesia years earlier.
Posts: 45 | From New Jersey | Registered: Sep 2008
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I'm sorry to hear about the difficulties that you have had as well. I am encouraged, however, to hear that you were able to knock-back the Lyme pretty well. I certainly hope (and believe, when I'm thinking/feeling clearly), that I have knocked-back the Lyme A LOT as well, and that by treating the Lyme and Babesia concurrently, I will knock both of these mo#@ fu&^#$# out, in relatively short time.
People say that you don't get better unless you treat the co-infections, but I think (and hope) that that means you won't get COMPLETELY better. I don't believe it means that you won't get better at all. That has been a fear of mine from time-to-time, but I think that that would be an incorrect interpretation. It also would fly in the face of what both you and I have experienced.
I too have noticed the increased symptoms of Babesia lately. As I'm sure you're aware, Babesia is notorious for having only a few noticeable symptoms, most of which can be attributable to Lyme. So, while it stinks for both of us, I am encouraged that our situations are similar in nature, and that we are both on the road to recovery.
I still get frustrated too, at times, but at other times I am so thankful that I have discovered this problem now, rather than having it go on for years and years (as happens to some people). I am so happy that I sought my second opinion.
The reason for seeking a second opinion in my case was that I was reading about a term called "happy herxing". It's when you keep herxing and responding to treatment, but improvement is slow and limited, to one degree or another. In short, you are not where one would reasonably expect you to be in terms of rate and success of treatment.
Thank you for adding your post. Hopefully some more folks will come forward and share their experience with this scenario.
Posts: 116 | From North Carolina | Registered: Apr 2011
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Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
I have never had a postive Babesea test. All I know is that I get anemic, night sweats, feel so sick I can hardly function, and it seems to respond to anti-malarial meds
My old Lyme doc had me on a combo of Mepron and zith and pulsing art for over two years, and over time it slowly stopped working until I was sicker than ever.
Now am on a combo of meds that seems to knock it down hard (anemai goes away and no more night sweats), but if I just try to cut down on meds, I slide back in one week. and the combo of meds makes me feel awful. In total, have been treating Babs (or whatever it is) for over 3 years.
The other thing I have found is that once the anemia goes away, then and only then do the abx seem to work on the lyme.
I understand your upset. It is very dificult when you are fighting ghosts...
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Thank you for sharing your experience Amanda. I hope that your troubles go away soon. :-)
Posts: 116 | From North Carolina | Registered: Apr 2011
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posted
Yes....I received a positive test. It was not from Igenex, however. It was conducted by a lab adminstered by the County of Sonoma, CA. According to my LLMD, they are the best when it comes to the detection of Babesia.
Posts: 116 | From North Carolina | Registered: Apr 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I argued with an LLND that I needed to continue treatment for bart and start treatment for babesia as I had just started having air hunger. I had been treating borellia for two years and was no longer having monthly flares but the bart was raging. I had started Bactrim DS on my own which was helping.
She refused to respect my knowledge of my own body insisting that she always treated borellia first. So I did not get the Mepron I asked for. I continued with the Bactrim DS.
9 months later the babesia was raging as the bart went under. I tested positive and was finally given Mepron/zithro by another LLMD I had to travel thousands of miles to see.
I am back to treating myself getting help from the GP. I switched from Mepron to Malarone with rounds of Coartem. I have not felt this good in a long time. Knock on wood.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I never had a pos. test. But my LLMD just treated for it anyway...AHHHH I was so much better when I did. And I got rid of a rash I had for 9mths...LOL
Crystal Ball not needed--just treat Everything-including parasites regularly.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I am answering the original question.
I treated lyme for 2 years and got to about 75% doing that. But, if I ever stopped the antibiotics, in 2 weeks I was sick as a dog--a total basket case mentally and physically.
I switched lyme docs and was then tested for cos. Had babesia and bartonella. New doc then polished off the lyme in 2 months, then went after bart and then babs.
In 13 months with the new doc, I was done with treatment. It only took 8 months to get symptom free. Then, treated for an additional 5 months.
So, if babs is discovered late in the game, no big deal. Just treat it. Until the babs is treated, you will never get into remission.
However, the meds you said you took for lyme with your first doctor (mino, mepron, and diflucan) are not normal lyme treatment.
The mepron is a babs med, not a lyme med. But, it should not be taken alone. Maybe you just didn't list all the meds that doctor used on you. The 3 you listed just don't make much sense if you had "intense treatment for neurological lyme."
Diflucan is for yeast, for example.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I treated lyme for 4.5 years without getting better only worse. During that time I tested negative for babesia microti on several different visits. Finally, after changing doctors I was tested for babesia duncani and was positive.
I started treating after flying to california and consulting with a doctor over on the west coast. He then referred me out east and after 3 years of continuous treatment with several different combinations I have improved greatly!
I would recommend that you seek out someone who is very familiar with babesia and its treatment. Keep at it. Remember that all the while you are treating you need to detox. This is the key to regaining your health. I treated babesia with at least 5 different meds and combo's. I think you need to be consistent and persistent. Even after one year of high dose Mepron I still had a positive fish test for babesia. I found that shocking.
I do know one thing for sure at least for babesia duncani. You have to keep at it for quite a while.
Just a question for Amanda. Have you tried Riamet yet? Seemed to help me alot when I rotated with high dose Malarone for about one year maybe more.
posted
TF- Your story is exactly what I was looking for. Someone who walked in similar shoes, and had a success story. I beleive that I am in good hands, and i am going to trust my new doctor, but it's always helpful to hear a story like yours. It gives me something tangible to hold onto, when there are only questions everywhere else you look. :-)
Is there anyone else out there with a similar story?
Thanks so much, and God bless.
Posts: 116 | From North Carolina | Registered: Apr 2011
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posted
Happens all the time. Very common to miss babesia due to flawed testing and inexperienced doctors.
If your dr had combined Zithromax or Biaxin with that mepron maybe you'd be well by now.
Also consider zith and artemisinin.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I was diagnosed with Lyme in 2006 - but didn't figure out I had Babs until last summer! I don't have any of the 'classic' symptoms and tested negative. It was only when I herxed with my rife that I figured it out.
Now I am rifing for everything and making more progress - slow but at least I'm making progress.
Posts: 1761 | From USA | Registered: May 2006
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
After following stories on here for 1.5+ years, I believe 99% of us have lyme, babesia, and bartonella and often lots of other things.
When are they just going to stop torturing us by treating based on test results. Just start treating all three and see how we improve.
After 3 negative tests (but a tick, a bull's eye, and symptoms starting 3 days later, so I KNOW what I had)and 8 months of Bart treatment, I begged my LLMD to start treating Babesia too.
When he did, when he treated for Babesia AND Bartonella at the same time, I made significant progress.
My advice, jedidano, lt go of the anger no matter how justified it is. It will only hold you back and hold you down.
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