Babesia How long till I'm clear???

[Cynkevtay]

I started babesia treatment. seems to make muscles ache more. Probably a herx reaction. Does anyone know if it takes as long to fight babesia as lyme????? I am taking a herbal appraoch at this point...

[mojogal]

From my own personal experience with an anti malaria drug, it took me 6 months to get rid of it. I wound up in the hospital needing a transfusion. After getting the transfusion it was like a miracle, all Babs symptoms gone.
Knock wood.

[Cynkevtay]

Yikes. That sounds tough. I am hoping to kick its "Butt" but will be talking to my LLMD about if I should be on a drug stronger the the tincture I am taking.

[kat4786]

I know this post is from a long time ago, but i really hope you respond, as I could really use some information. What herbal remedy were you using for babesia and what was the outcome?

[kat4786]

I know this post is from a long time ago, but i really hope you respond, as I could really use some information. What herbal remedy were you using for babesia and what was the outcome?

[mojogal]

If you go with abx they usually give you Mepron or Malarone. Very strong meds. I wish I could kick bartonella's butt. It's still hanging on after a year.

[JackieCalifornia]

fwiw

My LLMD was an all-antibiotics kind of doc (with probiotics added to replenish the 'good' bacteria), and it took a few months of treatment with Mepron/atovaquone and Zithromax/azithromycin for 4 to 5 months.  I'm very sensitive to meds etc., and had no problems tolerating the treatment.

[cave76]

mojo----- Do you mind me asking why you had a transfusion? Was it to get rid of the Babs in you?

[leilajax]

I'm intrigued by the fact that you felt better after your transfusion.  I got worse 10 fold after mine.  My LLMD thinks that because coinfections aren't tested in donated blood that I may have actually contracted additional infections due to it:(

[JackieCalifornia]

Your LLMD sounds like a smart doc ... thinks out of the box.  That's good.  But sorry about your misery.  

[Cynkevtay]

I had a herx last night that was terrible, on the babesia tincture.l  was sweating and disoriented and hand felt like a thousand pin pricks. Now hand numb feeling and ankle feels more numb its very strange.  Gave me an anxiety attack. Also had air hunger terribly. Woke up feeling better but oh what fun//////

[mojogal]

I had to have a transfusion due to extreme anemia which my Lyme aware hematologist thought was from the malarone I took for my Babs.
I felt so much better and all my Babs symptoms went away and hasn't come back. That was October.

[Ricobord]

I have had herxes just like what you describe.  My Babesia herxes have happened with every single prescription and herbal I've taken for it since last fall. (I had no herxes to three different herbals 8-10 months earlier. Go figure.)  Be careful as you don't want to push yourself into respiratory distress.

From what I've read, a full transfusion is the treatment for severe anemia casued by Babesia. Even the CDC and IDSA agree with this.  I have almost wished I would get anemic so I could have a transfusion and be done with it.  But of course there is always the risk of getting something else in a transfusion. Sigh. Both the CDC and ILADS describe cases that do not cause anemia and that seems to be the case with me.

From what I have read, herbals can definitely knock Babesia back. But they can't cure it.  If you can reduce the parasite load with herbals and then go for the prescription meds, then you'd probably need less meds to finish it off than if you started with them. Since the meds aren't always covered by insurance, this could be a significant savings. (I feel blessed...my insurance covers both Malarone and Alinia. Alinia is 2 grand a month at the 3x/day dosage. I'm on 2x/day right now, but am supposed to work up to 3x/day.)

I have been treating Babesia for 6 months now. My doc had predicted I'd feel "a whole lot better by now."  Well, that was a little off. I feel somewhat better. I still have a lot of fatigue, some brain fog, stomach problems, swollen spleen, and some breathlessness. My excessive sweating went away for a couple months, but recently came back in mild, short episodes.  My air hunger is MUCH better. I can take a satisfying breath most of the time, but I'm still breathy when I talk and worse within an hour or twon of any anti-Babesials.

It's hard to know how much of my sluggishness is from the medication, as both prescriptions make me sleepy and a little dizzy. When I went on a family trip for spring break, I cut my meds in half and I felt better. I still had a lot of down time, and got a really nasty cold, probably because I over did it, but I managed.

Yesterday I read an Aussie ILADS doctor's web site, and he said that most cases of Aussie Babesia were successfully treated in 6-8 months. (I got mine there.) We'll see how I am at the 8 month mark. My case seems to be rather stubborn, with about 7 years to form biofilms and hide.  I have heard of people being treated for it up to a year and still relapsing later. I am hoping that won't be me since I'm using a biofilm buster that seems to be working well (Boluoke).

I have been surprised how disabling Babesia can be.

[Cynkevtay]

I am often wondering now if babesia is the cause of my neuropathy? I have tons of muscle pain rolling twtiching but the neuropathy is scary. I had a severe reaction last night like a thousand needles pressing in my hand and a shooting pain in my vaginal area. I know this is personal but it was bizarre to say the least. It only lasted a few minutes. My foot and hand are very numb and heavy feeling. I would like to get re-tested at Igenex but it costed alot of money the last time and I just dont have the extra with all the therapy's I am doing. I have two insurances right now feel blessed but they dont cover everything I need for lyme and coinfection issues. Ill be broke as long as I can regain some happiness....

[JackieCalifornia]

What does your doc say about babs causing neuropathy?  These are symptoms your doc should address with you.  When is your next appointment?  If it's a long time away, call and ask to be seen or at least to have a callback from the doc.

All the questions you are asking above are good ones, and getting answers is important -- have you asked your doc these questions?  That's the first place to go.  Why do you want to get retested at IGeneX?  Do you think you were misdiagnosed?  

If you are not trusting your doc, why is that?

[Cynkevtay]

I need to call him again. Its very expensive at 275.00 a phone call, I try to keep my visits limited as to what I can afford. I do the best with what I have. I was tested two years ago by Igenex at 1100.00. I have posted the results on one of my posts. I have been retested on the standards I wouldnt have Lyme but I do have some very lyme specific bands. But mostly on not sure if its IGG or IGM. I just wish things were less confusing and more concrete. I know that I sounds crazy but its just that I read alot and have seen alot on both sides of the coin so to speak. Its all overwhelming. I am trying very hard to trust my heart and DR. but there are many opinions. The neuro says possible fibro the rheumy thinks its all in my head. The tests come back more on the side of Lyme and I am just exhausted and tired and worried.LLMD says lyme. I say I have had enough. Like I said if there is one thing I would do if I won the lottery it would be to put a ton of money into more accurate testing for all this... Crying helps but doesnt cure anything...

[leilajax]

You are not alone.  I am on the fence myself still.  The doctors' mind games are what I blame.  I often wonder what it would be like if I got them, all 30+ of them, in one room and had them argue over what was wrong with me.  Each pushing me off to another docs' expertise.  Or would they all shrug their shoulders and put me in a padded room?  One thing is certain, not one of them is on the same page.  
And you're right, crying does help:(. Hopefully, one of these herbs, meds, and/or supplements will be the key to getting your old self back soon, though.  Thinking of you!

[JackieCalifornia]

Do you mind if I make a few comments/suggestions?

I went through 20 MDs of all different specialties (and GPs too), and none of them figured it out, till one of them (an endocrinologist) ran a standard Lyme test (not IGeneX) out of desperation, and it came back positive.  Her comment?  "Oh, you can't possibly have Lyme."  So I took that test and found an LLMD, and am well now, and have been for several years.  The LLMD said he was surprised the standard test the other doc did came back positive, because so often they don't.  I was lucky.

That you have specific Lyme bands is significant. Doesn't matter if it's IgG or IgM ... those are different antibodies that occur at different times in Lyme:  the IgM antibody is the first one produced shortly after a Lyme infection begins, and the IgG appears later in the infection.

The only bad news (other than having Lyme) is that nonLLMDs don't use the IGeneX tests and seem to think the IGeneX tests are a fake of some kind, perhaps because they give more positive results than the usual Western blot/ELISA tests, and the IDSA doesn't recommend them.

The IDSA (Infectious Disease Society of America) believes the W.blot/ELISA tests are find, so they are suspicious of the IGeneX tests as 'having too many positive results' ... so they MUST be fake, right??  Wrong..

You say further: "The neuro says possible fibro" -- fibromyalgia is not a disease with a cause or a cure.  It is a collection of symptoms that the docs can't account for:  a syndrome.  

The Mayo Clinic website says:  "Doctors don't know what causes fibromyalgia, but it most likely involves a variety of factors working together. These may include:  (1) Genetics. Because fibromyalgia tends to run in families, there may be certain genetic mutations that may make you more susceptible to developing the disorder.  (2)  Infections. Some illnesses appear to trigger or aggravate fibromyalgia.  (3)  Physical or emotional trauma. Post-traumatic stress disorder has been linked to fibromyalgia."

Let me deconstruct that reasoning:

Reason #1, or ... someone with fibromyalgia lives in an area where there are Lyme ticks, and so does their family.  That's not genetic:  that's epidemic, meaning widespread disease in a particular area.

Reason #2, or ... 'some illnesses' may run down your immune system so that it doesn't do as good a job at suppressing a Lyme infection, but if the docs don't believe in Lyme, they're not going to diagnose it.

Reason #3, or ... 'Physical or emotional trauma.' -- hey, we live in a tough world, and many of us (if asked to do so by, say, an MD) can come up examples of physical or emotional trauma we have been through:  car wrecks, failed romance, family problems, money problems, school problems, etc.  'Post-traumatic stress disorder [PTSD] has been linked to fibromyalgia.' -- Well, PTSD is a reaction to stressful events, and fibro is not a disease, but instead is a collection of symptoms without a known cause .... but what the hey, it's easier to give vague theories about fibro than acknowledge that a bacterial infection of which there is scientific proof of a disease and its cure.

Look at those of us who have been infected, tested, diagnosed and treated and who then get well.  That's what I call proof instead of excuses and unanswerable hypotheses from supposed scientists and physicians watching their patients waste away.

"The rheumy thinks its all in my head."  Rheumatologists and infectious disease docs are among the groups of specialty docs who have long ago decided that Lyme is hard to get and easy to cure with a little doxycycline.  Personally I would not put too much faith in a rheumy recognizing a case of Lyme if he tripped over it.

"The tests come back more on the side of Lyme and I am just exhausted and tired and worried.LLMD says lyme."  Exhausted and tired and worried is consistent with having Lyme -- and being told that you don't.  The doc who, in desperation, finally ran a Lyme test on me that came back positive?  She said (and this is a direct quote):  "Oh, you couldn't POSSIBLY have Lyme.  I have patients with Lyme, and they are all ... near death."  So, the definition of a disease is that it you won't diagnose it before it gets to the point where the patient is about to die??  Insanity. Lyme is a bacterial infection that lasts a long time unless it is treated, but it can indeed be treated.

"I say I have had enough."  Good for you!

"Like I said if there is one thing I would do if I won the lottery it would be to put a ton of money into more accurate testing for all this..."  The current testing is not that bad, particularly the tests run only by IGeneX Labs in Palo Alto CA.  Lyme testing is not like a pregnancy test with the + or - signs on the stick tho.  Lyme is a tricky bacterium related to syphilis, and like syphilis, it can hide in the body where the immune system cannot easily find it, and continue to do its dirty work over a long long period of time.

The good news is that both Lyme and syphilis are curable, when treated promptly with antibiotics.  

"Crying helps but doesnt cure anything... "  Too true.  Since your docs are at a dead end, what do you have to lose by pursuing Lyme and its co-infections (other separate diseases carried about half the time by the same ticks that carry Lyme).  Co-infections need separate testing, and often separate, different drugs from what cures Lyme.

Bottom line is that infectious disease docs, rheumatologists, and other specialty docs have decided that Lyme is rare and easy to cure with a couple weeks of doxycycline, and that any continuing symptoms after treatment are your immune system reacting to an infection no longer there.  What is more logical -- that treatment for a few weeks was successful but the symptoms themselves are still around, or that the infection was not fully treated?  

There is massive denial in the medical profession, because the docs who first identified Lyme a few decades ago are high up in the IDSA (Infectious Disease Society of America) even now, and they cling to their initial impressions of Lyme that were a good start, but turned into assumptions.  Science and medicine are supposed to progress, but these docs' early views when little was known about Lyme have been enshrined as fact, despite other research that shows how persistent Lyme is when not fully treated.

Your doc's treatment of hasn't work, it sounds like.  In your situation, I would find an LLMD and try that.  Some LLMDs are odd ducks, but you can find good ones.  I did, and I am well.  I wish the same for you.  Let us know how we can help, okay?

[leilajax]

Once again very well said Jackie:). I can't speak for Cynkevtay, but my own personal doubt comes from being told over and over again that it's this or that or the other.  It's hard to know which way is up with the all the differences in opinion.  I'm going through a hopeless kinda grumpy phase right now.  Impatience with diagnosis is tough enough, but then I have to add at least a year of feeling like THIS to it and I would rather dive off a cliff some days.  That's when the mind in desperation swings to non-LLMD's diagnosis bc if I go with their diagnosis, maybe I'll feel better sooner.  In my heart of hearts, I know those other doctors aren't right, I know that I've had positive Lyme bands, I know that all the symptoms point that way, but I don't want to tell myself that I am going to have to feel this way for another year... even another week longer.  It is tough to face, to FEEL, to treat... I know you've been there and possibly went through this phase as well and like an angel are here to encourage us to get through it.  Bear with me while I walk the fence.  I promise to do all of the things the LLMD requests, but if my wandering ear leans in towards other doctors opinions and doubt pops in from time to time, extra help pushing through it is exactly what I could use;)

[JackieCalifornia]

It's good to doubt:  otherwise we are just sheep getting herded somewhere we may not want to end up!  Docs are far from perfect, being mere humans like the rest of us.  :)  It's the docs who refuse to believe there is something they don't understand that really get me cranky.

So don't apologize -- you are taking charge of your health and your life by asking questions and re-evaluating as you go.  That's a VERY good thing.

Part of what may be making it difficult to sort all this out is the effects that Lyme can have on the endocrine system -- that's hormones, and that means mood-affecting.  Another of Lyme's dirty little miseries.

Doubt is a tool to analyze and work through the issues.  Years ago an engineer I knew used a phrase I had never heard before:  'working the problem.'  He meant gathering data, pondering it, moving it around in different ways, studying it some more, trying a few things, and eventually coming up with a tentative game plan for going forward.  This works on not just engineering projects, but also life, and it's a healthy and helpful thing.  It puts you in control of how you react ... including how you react to Lyme.

Think, read, take medical advice, think some more, go with a game plan, then re-evaluate after a while to see what new data there is and if it changes the game plan.  It's a journey, like driving cross country without a map.  You know where you want to get to, but don't know which roads to take, so you ask advice from people along the way, and re-evaluate as you go.

As you say, you are walking the fence, and that's healthy -- it means you are taking charge of your situation, as much as anyone can.  As it should be!  And we're here if we can help provide data and thoughts that might be useful to you along the way.  You go!

[Cynkevtay]

Thank you everyone for your support. The last three days have been rough. Foot feels numb and fingers in left hand go numb and legs twitch and i don't have many who understand so all of your support and time has made me feel at least understood and much less alone...

[leilajax]

Jackie, great words of advice!  The doubt will hopefully dissipate once biopsy and Igenex testing results come in... and will definitely be GONE when symptoms start to resolve.  It just takes soooooo long to see results that "hanging in there" is brutal.  Thank God for this forum, is all I can say!

Cynkevtay, I have the numbness in my hands as well.  It comes and goes.  Just when I think that it is never going to go away and fear the worst, it dissipates.  Mine usually rears it's ugly head around the time I get severe neck stiffness, so over the past year I've come to expect when it will happen.  Do you notice a pattern in your symptoms at all?  Also, my muscle twitches have gotten worse since starting doxy and have not relieved with magnesium supplements like suggested:(

[Cynkevtay]

My twitches started after a week on doxy. My numbness in left hand was coming and going but has stayed a a few days now with some brief relief here and there. My right foot has started with a weird heaviness numb feeling and sometimes painful on top of the foot and around the ankle.  My twitches in legs were constant for a while but I do get a little relief from them now but they aren't gone. As I'm typing hands left hands numb and I am experiencing mild twitches. I diagnosed myself with als three months ago but know its not likely.but I do get cramps in my calves a well they are better but still get them... You sound like you have very similar symptoms as mine. The strangest part for me was that this all started after a month long gastritis issue and I belief I was infected with Lyme 6 years ago. The only symptoms experienced previous were flu like symptoms twice or three time a year that lasted a long time sometimes. 3  weeks.

[leilajax]

I get cramps in my calves as well.  They come and go.  I worry about them most when my heart pauses (skips a beat) at night.  All of these symptoms are so scary, so I totally understand where you are coming from and the fact that I've been on doxycycline for over a month and only noticed symptoms worsening is discouraging.  I keep trying to have faith and know that 1 month of treatment is very small in comparison to this long battle, but impatience is wearing me down.  Praying we break through this soon!

[JackieCalifornia]

"My twitches in legs were constant for a while but I do get a little relief from them now but they aren't gone."  ...

"I do get cramps in my calves a well they are better but still get them..."

Muscle twitches and cramping can be caused by low magnesium levels in the blood, and Lyme uses up the magnesium.  If you are not taking supplements, I'd consider it and ask the doc.

"... for me was that this all started after a month long gastritis issue and I belief I was infected with Lyme 6 years ago."

Could have been a reinfection. Lyme ticks don't know if they are biting someone who already has Lyme.  The new tickbite can also bring new coinfections.  And you may not know you got bitten again.  Many possibilities.

[JackieCalifornia]

The heart is a muscle too, so if you are low on magnesium .... well, you get the point.  

[Cynkevtay]

I don't beleive I was reinfected but maybe being sick brought out more symptoms. I beleive the doxy made my symptoms worse as well. Legs twitched more and cramps in legs became worse.