posted
Hi! Thx for having this website! My mom has recently been diagnosed with Babesia and her Elisa for Lyme came back high positive however, Lyme Western Blot negative only showing 2 bands.
Doctor started her on Doxy 100mg bid then Babesia high titer came back so he put her on Quinine but kept on Doxy. I don't think this is effective for Babesia????
This all started when I insisted she go to hosp. Had 104 temp, xtreme muscle pain & fatigue. Hosp insisted ortho & rheum docs & infect. disease docs dismissed her saying she didn't have anything & def not lyme. She even had dark urine.
After she went home I asked her family doc to add on tick borne disease including Babesia....cripes!
So we have no faith in these docs and that she will be properly treated so this is why we are looking for a great LLMD! I posted under seeking doctor for that question.
I'm reading how tricky babesia can be to treat and the initial treatment should be 3 wks?? My mom took quinine for 1 day and woke up next morning and couldn't hear good at all. Noticed right away she couldn't hear water running. I just read that quinine is old school and shouldn't be used....thank you lymenet!
so if she does also have lyme along w babesia, how is this treated? Does babesia get treated 1st then lyme? And I also read somewhere that 200mg doxy a day is too low a dose, that true?? Thanks!
Posts: 5 | From lehigh valley, pa | Registered: Jul 2011
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posted
I am not an expert but this is my experience. When I became sick one of the things I noticed was dark urine. Also severe night sweats. I have read that both are signs of babesia.
Later on, after being sick for awhile and finally going to see a LLMD, I was treated for my babesia with Malarone for 2 months. I have not had night sweats or dark urine since (about 3 years ago).
I also think that it is generally accepted that a negative test does not mean anything. And even though her test was negative, 2 positive bands can be very significant. Hopefully others more knowledgeable will tell you what they think.
IMO, looking for a good LLMD as you are doing is exactly the thing to do.
Posts: 233 | From ft. myers, florida | Registered: Apr 2004
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Hi hollygirly:
My daughter has been on mepron and zithromax for over a year. Her night sweats did not aleviate for over 9 months (we had the AC on in the winter).
Our LLMD indicated it is a minimun of 8 months to treat babs with Lyme.
You will need a Lyme Literate Medical Doctor in PA. There is a good one in Germantown. The regular MD's will not be able to help you.
Post a new subject requesting a PA MD and someone will be able to help you.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
It�s amazing there is a controversy to this insidious disease and I�ve found it easiest to show a couple of u tube video�s on the controversy.
Only a lyme doctor will give your mom proper treatment.
Lyme doctors often treat lyme for a little while and then add in babesia treatment. But, some treat lyme and babesia at the same time. There is no set rule on this.
Regular doctors only give 200 mg of doxy per day for lyme. You will notice that Burrascano says 300 mg per day is the minimum. Often, higher doses are given by lyme doctors.
Read and study the Burrascano Guidelines and they will give you an education on this disease and how it is treated.
You can contact support groups in your state (see "Support Groups" on left side of page) to find out who the good lyme doctors are. I suggest you ask them for one who follows the Burrascano Guidelines. That's how I got well.
Wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
hollygirly310
If you Mom had a positive ELISA then she is positive for Lyme, regardless of what her Western Blot said. Run to an LLMD.
She needs upwards fo 200mg 2x / day of Doxy as an INITIAL treatmetn for lyme.
As for Babesia treatment, the most common protocols today are Zithromax with Mepron. Or Zithromax with Malarone. Artemisinin is added in many cases.
As others have stated...treatment can be for months and months.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Your Mom is very lucky to have you watching out over her treatment. Getting a LLMD is the way to go.
-------------------- 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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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
Just got an email from the doctor and my vomiting son on mepron will switch to coartem. Malarone is the other babesia med.
Does anyone have an ECP level to share?
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
The bands detected in mom's western blot were: p41 BB IgG p23 BB IgM This significant?
Her babesia IgM was 1:1024 and no IgG detected.
So now she had bad rxn to quinine, after 1 day lost most hearing, couldn't hear water running when woke up, yikes! So asked her family doc for the other treatment and msg today was he wants to send her to infectious disease! So now she will go untreated for babesia for 2 weeks? What damage can be done?? She is just on 200mg of doxy. Thanks for all of your replies and help!
Posts: 5 | From lehigh valley, pa | Registered: Jul 2011
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posted
41 is the flagella (tail) of a bacteria. It is not lyme specific. 23 is the outer surface protein of borrelia, and is lyme specific. IgM means it's a recent infection. She has lyme, and should be properly treated. See a Llmd asap.
Posts: 418 | From NJ | Registered: Sep 2007
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posted
Thank you soooo much for quick response and all of your awesome knowledge!! I did receive a list of LLMD's when I posted on Seeking a Doctor. Mom has an appt with one in 2 weeks. Question: how do doctors get on this list?
Posts: 5 | From lehigh valley, pa | Registered: Jul 2011
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posted
Another question, when she was in hospital her liver enzymes shot up high (alk phos, alt, ast,ggt, total bili) and also had a high CRP and Aldolase. So they were thinking myositis. Her right thigh muscle was incredibly painful. Does all of this happen with babesia?? Also now she has prickly skin on her back, neck, arms and sides. Says it feels like under her skin and is all the time. What's this?
Posts: 5 | From lehigh valley, pa | Registered: Jul 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
These are not typical babesia symptoms. Read in Burrascano to see typical babesia symptoms. They are listed in the section on Babesia.
Prickly skin could be many things including a reaction to whatever medications she has been taking (an allergic reaction), heat rash from sweating, etc. She can try taking Benadryl and perhaps will get some relief that way. That helps with hives and other allergic reactions.
The way doctors get on our list of lyme doctors is that someone reports that they will treat lyme disease long-term.
So, that does not mean that they are good at treating it, just that they will treat it. That's why it's good to contact the support groups in your state to find out which docs are good.
Posts: 9931 | From Maryland | Registered: Dec 2007
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Liver enzymes can go up with RMSF (rocky mountain spotted fever) and ehrlichia.
Not sure about the high CRP and aldolase but I think that could be because of the lyme. elevated CRP usually means inflammation, which happens with lyme and aldolase could go up with damage to muscle.
Maybe look up some info on lyme myositis?
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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posted
Actually the quinine and clindamycin combo is probably a stronger med combo than the expensive mepron and zithromax combo. But as you stated hearing issues are one of the major potential side effects. The other major potential side-effect is c. difficile from the clindamycin.
Hubby just finished 6 cycles of quinine and clindamycin -- 4 ten day cycles and 2 twenty-one day cycles. Wish we could do more but doc will not prescribe it. He had hearing issues while taking the quinine, but it returned to normal within a couple of days of stopping the med each time. Pretty sure that extra magnesium is beneficial to prevent hearing issues while on quinine.
Since your mother has recently become ill she needs to stay on the quinine and clindamycin and not stop. If she can get rid of the babesia now it will be much easier to kill than in someone like hubby who has been ill for 11 years. Your mother could be one of the lucky ones who is cured from babesia in 10 days. Or it could take 2 or 3 ten day cycles of quinine and clindamycin. But as I said -- don't stop treatment until you have an alternative lined up.
Hubby took the quinine and clindamycin for 10 days and then was off the meds for 10 days and just kept repeating those cycles. It would also be good to add in the herb artemisin if possible.
A high fever of 104 all by itself can cause many if not all of the bloodwork abnormalities you mentioned. While treating for babesia hubby definitely has elevated bilirubin when more red blood cells are being killed off -- which is what causes the dark urine also. The elevated liver enzymes could also be due to babesia.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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