Babesia Questions

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shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/18/2009 4:44 PM (GMT -6)   
Hi, All!  After writing on the forum a few weeks ago, I'm really starting to become convinced that my sister is battling Babesia almost more than Lyme.  Some of you also suggested that her symptoms sounded very much like Babesia (extreme muscle weakness, muscle pain especially in the buttocks, thighs, and calfs), air hunger, debilitating fatigue, cough, hoarseness, dizzyness, etc.)  No night sweats at all, which confused me until I read quite a few posts of people being successfully treated for Babs. and they never had night sweats either!  She has been treated by a LLMD for 4 1/2 years and has done a variety of RX's, to include 10 months of IV Roccephin)  Currently she's taking a combo of Ceftin and Plaquenil.  She also does lymphatic therapy and accupuncture.  Sadly, just today, both her accupuncturiest and her PT said she has severe inflammation in her spine and organs - in fact, the accupuncturist said her entire system is shutting down!  That explains why she's worse now than ever!  Many of the less bothersome symptoms have been resolved, but over the past year the remaining "big 3" as we call them have pretty much made her an invalid.  The fatigue, muscle weakness/stiffness in the legs, and dizzyness are 100 times worse now than before her lyme diagnosis in 2004 (her Igenex test came back positive and lyme treatment was started with the IV Rocephin).   about 3 -4 years ago she was treated for a very short period (less than 2 months) for Babs - had to stop because she could not tolerate the treatment (Mepron/Zithromax/Artemisinin).  She is currently seeing another doctor who is not a lyme specialist- my sister can no longer handle the 2 1/2 hour ride to see the LLMD, not to mention the cost of the appointments.  Like many lyme families, they are almost financially ruined because of the cost of treatment.  Anyway, I'm not sure her current Dr. will prescribe Mepron/Marlarone without a definitive result from a Babesia test - nor am I convinced the Dr. will even order a Babs test!  I read in Dr. Singleton's book that the FISH test is the most sensitive for Babs.  But even that test can be "iffy".  Because she's just getting sicker with every day that passes, I was thinking about having her start back on Artemisinin capsules (she's already taking Plaquenil for cyst-form lyme), until we can find a LLMD closer to home. 
 
I have two different sets of questions:
 
1.  If her current Dr. will start treating the Babs, should she request Mepron or Malarone?  I would like to pick which ever one is "gentler" to tolerate.  Will she need to stop taking C0Q10 with either of these drugs she chooses?  I thought I read the C0Q10 makes these antibiotics less effective.  I know she'll need to incorporate Zithromax, but was wondering if anyone was ever prescribed Mepron or Malarone, plus Plaquenil?  My sister loves the Plaquenil and has no problems taking it (she sees an eye specialist every 6 months to make sure no problems crop up).
 
2.  If the Dr. won't prescribe the above RX's or test, should we start her on the herbal treatment of Artemisinin until we can find a new LLMD?  If so, I've read in Stephn Buhner's book that a slightly modified form of artemisinin, called artesunate, has been found to be very effective in erradicating Babs.  In fact, with this form, low concentrations were highly effective.  Has anyone heard of or used this form?  Any success stories using this treatment?  If so, what dosing would be appropriate for Babs?  Buhner suggests the dosage used for malaria, approximately 500 mgs. a day, is best for Babs.  I've also read that this treatment should start out very slowly - increasing as the system adjusts.  What exact dosage is "slow", and for how long before you increase?
 
I'm so sorry for this "book" - but we are desperate!  Especially since she was told today that her entire "system is failing".  I would deeply appreciate any information or guidance offered.  I have to do something to help her because it's not an option to let her slip away!  Thank you and God bless all!
 
 

twicebitten
Regular Member


Date Joined May 2007
Total Posts : 124
   Posted 3/19/2009 3:12 PM (GMT -6)   
Shadowmom-- I don't post often,but saw that no one had replied to you. Babesia can be very debilitating. Many LLMD will treat this disease based on symptoms without the need for a positive test result.
The treatment that works best for me is malarone and rotating combinations of antibiotics. I have used zithromax, rifampin,bactrim and I am sure some others I can't remember. Finally after two years of treatment on and off the malarone, I am getting resolution of the horrid dizziness/vertigo that has plagued me for 4 years!
I think that the malarone is easier to tolerate than mepron. I have never taken mepron, but people here have said it is rough on their systems. I have never taken strictly herbals for my Lyme/babs and it is my personal opinion that when you are as ill as your sister, herbals will not do the trick---she needs antibiotics and antimalarials to help her along the path to wellness. I also take arteminisin twice a day.

As far as recommending dosages of herbals to you, i really am not qualified to speak on that subject. In my humble opinion, the best thing you can do for your sister is to get her to a qualified LLMD other that the one she has been seeing to get a second opinion and get some sort of babs treatment. It does sound like babs based on the symptoms, but only a good LLMD can verify that. Perhaps you can post your location and get some good LLMD references from the members here.

I know that I did not answer all your questions, but many of them are, I feel, best answered by a doctor or someone who knows more about herbals that myself.

I wish you and your sister the best and hope that she will get the help she needs soon. You are a good person to be such a great advocate for your sister!

Ellen

shadowmom
Regular Member


Date Joined Mar 2009
Total Posts : 24
   Posted 3/19/2009 8:36 PM (GMT -6)   

Hi, Ellen!  Thanks so much for responding.  Yes, I really think we need to find another LLMD closer to our home.  We live in Maryland, I would welcome any specifics on a LLMD in the Gaithersburg/Rockville area.

I was wondering if you had be given a Babs. test, and if so, which one and did you show positive?  I guess I'm panicking somewhat because she is so very, very sick.  I wasn't sure if between now and when we do find a LLMD and get scheduled, if there was any point in getting her on arteminisin - she's just restarted Plaquenil, so my very burned out brain was thinking maybe this combo would be better than nothing.  Guess I'm just grasping at straws!

Anyway, would love to her back from anyone that could recommend a really good dr. in our area of Maryland.  Thanks again, Ellen, and I was very glad to hear that some of your symptoms have subsided.  It's nice to hear good news for a change!  God bless!


twicebitten
Regular Member


Date Joined May 2007
Total Posts : 124
   Posted 3/20/2009 12:23 PM (GMT -6)   
Shadowmom--
I am one of those rare people that tested positive for both Lyme and babesia through Lab corp. Unfortunately, I made the mistake of going to an Infectious disease doc for many months before I figured out why I wasn't getting better.That is a story for another time! When I got to LLMD, he retested me through Ingenex and by then my Lyme load was really high. He treated just the Lyme for several months, then he began pounding away at the babesiosis. It has been a long,long haul and I am far from well, but at least I can function on a day to basis. Before, I was really almost bed ridden.

Unfortunately, Plaquenil is the one drug I have not taken. I do know that it is given in combination with other antibiotics. Is there not a local doc that could at least see her and get her on some amoxicillin or doxy until she can get straightened out doctor wise? I asked my family doc to give me 725mg of amoxicillin twice a day for three weeks while I figured out the whole LLMD thing. He helped me out and during that time it sustained me in a holding pattern until I got to LLMD.

I am in New Jersey, where we have several good LLMD's from which to choose. I will ask someone I know if they have a Maryland recommendation for you, or perhaps someone will come along and post something.

As far as the arteminisin goes, I am not sure what to advise. She could take it and have a very strong herx to it and then what? You really need to consult a LLMD. I truly understand your frustration with all this. Your sister is sick and you want to help. This disease is just so darn political. Why a person has to go underground to get help is so reprehensible that is boggles the mind!

Tell your sister to hang in there! I am sure, with your assistance, she will get the help she needs.

Ellen

ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 3/20/2009 7:12 PM (GMT -6)   

Hi shaadowmom.  I am sorry your sister is so sick.  I think twicebitten has give you great advice.  It is very important to see a knowledgeable doctor when treating tick-borne illnesses.  Which Lyme doctor was your sister seeing (please use initials only)?

What happened when your sister was on Mepron and Zithromax?  Are you aware of the herx reaction?

If you would like a doctor recommendation, you can email me at ko_@bellsouth.net

It can take time, but with proper treatment your sister can get better.  She is lucky to have your support.

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