Babesia symptoms

[rowingmom]

Not to hi-jack thread but Rowingmom your DD has a lot of Babesia symptoms. I was wondering what your Dr.'s position on the possibility of treating.

 

Thanks SFMom. If you look up lyme symptoms, you will find all of DD11's listed symptoms there as well. Dizziness, night sweats, anxiety attacks, pain at base of skull etc. The LLMD and I were going on the assumption that we were looking at lyme/bart because treating for lyme/bart seems to have resolved the problem, although DD11 is unable to hold her own when Abx are withdrawn. I do realize that having a neg result for babesia doesn't mean its not there. So, much to my chagrin, the LLMD wants to switch up abx from biaxin/rifampin/tindamax to minocycline/azithromycin/malarone to see if we get a BLO herx. So far so good with the mino/azith, but I am going to give it a few more days to get a baseline before adding malarone.

 

As for her pick-like headaches - they seem to be in the bones of her skull, always in the same spot, half-way between the top of her right ear and the top of her head. I have changed my signature to reflect that.

 

You guys have all the greatest suggestions! Keep them coming.

Edited September 19, 2012 by rowingmom

[SSS]

IMO, there is an overlap of symptoms with the Lyme, Bart, Babs, and sometimes different authors (Dr.s') lists can vary a bit as well in descriptions of symptoms.

 

I know I do read 'it' travels in the 3's- Lyme, Bart, Babs. Some say on the east coast, you just will be treated for all 3.

 

I am one who is 99% sure I just have the 2, Lyme and Bart. I had clear positive tests for both. I get ice pick headaches behind my left eye. Once in a while, a good sweat at night

(but under blankets) but I don't have fevers, etc. Yes, I've had the horrible fatigue, but that can be Lyme, I had low iron from a ongoing female issue, too.

 

Recently, since I came up with a low positive test for protomyxzoa Fl1953, the Fry bug and test,

my LLMD put me on Malarone, Artemesia, Beyond Balance Bab-2 tincture.

I was very keen to see my reaction, if I got a Babesia herx.

I did not, and I paid attention.

All I noticed was a 'toxic' feel of these heavy drugs on my system.

 

I ended up going off them, as I didn't want to do malaria type drugs unless necessary, and I feel like the jury is still out on the protomyxzoa and how to treat.

 

Anyway, long story short (too late!)

I think a trial/ starting the Babs drugs should give a clear picture if it is there, or not.

[mdmom]

Not to be a Debbie-downer, but we've had a really tough time getting rid of Babesia in our house. We think we are dealing with WA1 because my daughter was IGM positive in May 2011. So we did the treatment that was commonly accepted - 5 months of Mepron+Azith (21days/month) and 7 days per month of Tindamax.

 

Once we stopped and moved onto Bartonella tx, my daughter relapsed and her symptoms came back worse.

 

So then we started all over again with 8 rounds of Mepron+Azith+Bactrim (21 days of month) and Flagyl (7 days each month). Mind you, we are all being treated in the house because our doc says that Lyme docs are finding Babesia in more than one family member, suggesting that it might be transmitted between family members.

 

So we all down the Mepron and my son and daughter are also taking IV Clindamycin and IV Flagyl. Doctor also just recently added Paludrine (Proguanil) (had to get it from a Canadian pharmacy). Some docs are now thinking that to kill WA1 you have to use high doses of Mepron (3 tsp/day) + high doses of Proguanil. If you are familiar with Malarone, it is made up of Mepron and Proguanil.

 

So, bottom line is if you decide to treat Babesia, patience is really important.

 

Good luck.

[SSS]

ETA:

Sorry! I misread mdmom's post.

Edited September 19, 2012 by S & S

[rowingmom]

Once we stopped and moved onto Bartonella tx, my daughter relapsed and her symptoms came back worse.

Can I ask what your daughter's babesia symptoms are? I read the Wayne Anderson article several months ago and kind of dismissed it because sounded like there was a lot of lyme/bart overlap, and I was having trouble teasing one out from the other.

 

Thanks

[mdmom]

Her main Babs symptoms are dizziness, headaches, excessive sweating, low WBC, random attacks of itchiness, fatigue, anxiety

 

She occasionally complains of air hunger (like she can't get enough air in her lungs), chest pain

 

She has a lot of other symptoms, but these are the ones I believe are related to Babesia.

[Hopeny]

apparently the government thinks Babs is important as well:

 

 

Immunetics, Inc., has received a $3.7 million, two year SBIR contract from the National Heart, Lung and Blood Institute, an agency of the National Institutes of Health (NIH), to support clinical trials of a new blood screening test for Babesia infection.

 

“Babesia is among the top infectious threats to blood safety and, at present, there is no licensed test available. The NIH contract will allow us to address this gap in blood safety with the first cost-effective test designed for high-throughput screening of the blood supply. We are honored to have been entrusted by NIH to carry out this public health mission,” said Andrew E. Levin, Ph.D., Immunetics Chief Executive Officer and Scientific Director.

 

Babesia is a parasite which is transmitted by the same ticks that transmit Lyme disease. While it is often asymptomatic in healthy people, Babesia infection can lead to severe or fatal illness, especially in immunocompromised patients. The parasites can remain viable in blood donations and infect transfusion recipients. In recent years, nine fatal cases of transfusion-transmitted babesiosis have been reported. Surveillance carried out by the Centers for Disease Control and Prevention (CDC) revealed over 1,000 cases of infection nationwide in 2011 — a number that appears to be growing. The US Food & Drug Administration (FDA) sponsored a workshop in 2008 focused on Babesiosis as an emerging threat to the blood supply, and the Blood Products Advisory Committee convened a meeting in 2010 to advise the FDA on approaches to blood screening for Babesia.

 

The contract award will enable Immunetics to bring its Babesia test, developed under initial NIH support, through clinical trials and regulatory licensure. The trials will be carried out in collaboration with Blood Systems Research Institute of San Francisco, Calif., and Creative Testing Solutions of Tempe, Ariz. Creative Testing Solutions currently tests about 25% of the US blood supply, including regions endemic for the parasitic agent. The Babesia test will initially be made available through Creative Testing Solutions’ laboratories.

 

“We look forward to partnering with Immunetics and BSRI in the development and FDA approval process of a Babesia assay for use in blood screening,” said Creative Testing Solutions President Sally Caglioti. “It is always our intent to offer innovative services that provide our customers with the best donor testing possible. Active collaboration in the development of diagnostic tests that fit the immediate needs of the blood banking community is the next logical step to support CTS’ mission.”

 

“When the screening test identifies antibody-reactive donors, we will enroll and conduct rigorous testing of donation-derived and follow-up samples from those donors so that we can more fully understand the natural history of Babesia infection in asymptomatic donors,” said Michael P. Busch, M.D., Ph.D., Blood Systems Research Institute Director and Senior Vice President for Research and Scientific Affairs at Blood Systems. “The information that we derive will help guide the development of policies on how the test can be used most effectively. It will also determine whether and how donors who have had a positive result on the screening test could safely donate in the future.”

 

For more information, visit the company’s website at http://www.immunetics.com or call 1-617-896-9100 or toll-free 1-800-227-4765.

 

Immunetics is a leading developer and provider of innovative tests for a variety of bacterial, viral, and parasitic diseases. Recently, the company received FDA clearance for its BacTx® test for bacterial contamination in platelets. The company has developed and markets other FDA-cleared products, including a test for Lyme disease, and is actively working on new tests for HIV and Chagas disease — both of which are known or emerging risks to the blood supply.

 

About Immunetics

 

Immunetics Inc. (http://www.immunetics.com) offers state-of-the-art assay technology for infectious disease diagnosis and blood screening, and for more than ten years has been a leading innovator of tests for bacterial, viral, and parasitic diseases. The company produces and markets a range of infectious disease assay kits and instruments. Its mission is to deliver better, cost-efficient care through more accurate diagnosis. Immunetics is headquartered in Boston. Follow Immunetics on Twitter at http://twitter.com/immunetics.

 

About Creative Testing Solutions

 

Creative Testing Solutions (www.myCTS.org), a joint venture of Blood Systems and Florida-based OneBlood, is the largest independent blood donor testing laboratory in the United States, specializing in high-volume blood donor testing and infectious disease reference work. This non-profit organization, headquartered in Tempe, Arizona, tests nearly 4.5 million samples annually at three national laboratories in Dallas, Phoenix and Tampa that, combined, provide testing for more than 25 percent of the U.S. blood supply.

 

About Blood Systems

 

Blood Systems (www.bloodsystems.org) is one of the nation’s oldest and largest non-profit community blood service providers and operates community blood centers serving more than 500 hospitals in 18 states, biological products distribution services, a quality consulting group and a world-renowned transfusion medicine research institute.

•Download high resolution photos for publication from: http://flic.kr/s/aHsjBZcQTL

 

Business Wire

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Last updated on: 10/09/2012 16:00:03

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FEEDBACK

[sf_mom]

I know there is a lot of overlap but given symptoms and your DDs inability to come down or off antibiotics I too would suspect Babesia. We have one positive WA-1 child who is a twin. His twin sister and older brother are negative for WA-1. We did recheck DD last year to see if we had converted results but she was still negative. Because we are dealing with gestational Lyme we were fairly convinced all them had Babesia but truly did a lot of additional stuff to confirm diagnoses: herbal challenges, stool analysis - Babesia might show up as unknown parasite, treatment responsiveness, Fry Labs protozoa FL1953 positive as well with biofilms, ART muscle testing, etc. Our kids really lacked any obvious physical symptoms other than low WBC in twins, occasional night waking/night mares and temp intolerance that was very obvious in older DS as outlined by Wayne Anderson with bed covers (why I like his symptom list). Night sweats only occurred once we treated. I too am negative for Babesia but my predominate symptoms screamed Babesia with thigh pain, headaches, rashes, dizziness that would cause me to fall over or horrible dizzy spells 'like bed spins', etc. Prior to diagnoses I had been to urgent care for dizzy spells and told inner ear infection.

 

Anyway, Babesia treatment is rough but also rewarding. The first four months of treatment we definitely saw a worsening of symptoms with resurgence of OCD especially for younger DS or appearance of OCD for DD (she had not had prior OCD just anxiety). Our younger DS is on 1 tsp Mepron x 2 daily and Alinia for both Babesia and parasite. However, once past that first four months things seem to slowly improve with all the kids. Our older son who was treated for one year for Babesia with Mepron and herbals is doing well, we gave Babesia treatment a break in June and are focusing on potentially remaining Bartonella/Lyme. As of today, his only symptoms are temp intolerance, occasional sighing or air hunger when he plays soccer. It is a new symptom within last couple of weeks and easy to compare with other kids running up and down field. The air hunger is obvious and I am convinced the Babesia is not gone. I am looking forward to talking with our Dr. at next visit about the new symptom.

 

One of our Dr.'s often describes TBI treatment as the game of 'Whack a Mole". You beat down the Babesia and Bartonella symptoms surface, you then beat down Bartonella and Babesia symptoms surface. Of course, hopefully you are treating Lyme all the while a little. I have found this concept to be true for my children and hence maybe the resurgence of Babesia symptom for older DS.

 

Anyway, I thought I'd list what we did for herbal challenges: Enula 20 drops x day over 4 days or similar with Crypto Plus and watch for herx.

 

I am glad you are working towards Babesia treatment but think you need to give it "at least 4 months if not longer". It takes 120 days to replace RBC and you are not going to get all of it in the first four months (as much as I'd love for that to happen). A friend of mine is also on Proguanil and having success.

Edited September 20, 2012 by SF Mom

[rowingmom]

Thank you everyone for your insightful comments. I wasn't too up to speed on babesia - the links have been helpful.