from babesia to bartonella

[Susan LymeRA]

Hello all.

I haven't been onboard much lately.  I have had to increase my hours at work, my daughter had a baby girl and I had a turn in my health that set me back emotionally. 

From the beginning I have known that when you clear one pathogen, another will emerge as the troublemaker.  But I also knew that my doctor had told me we had to get rid of babesia ducani in order to get well.  She didn't tell me how hard that would be but I learned it well enough as time progressed.

So for 2 yrs I have been focused on the hope that if we clear babesia, I will get well. 

I was aware of mycoplasma, chlamydia, tapeworm, HHV-6, H. Pylori, EBV infections in addition to lyme and babesia, so mentally I was prepared to fight them all to the finish.

What I had no knowledge of was a bartonella infection.  Just as soon as we got the first negative babesia test, I developed swollen glands, stiff neck, sore throat, and I can't remember exactly what else at that point and time.  Whatever my symptoms, the doctor declared “bartonella” and started me on a homeopathic remedy for it.  That remedy knocked me to the floor.  I had stomach ache, swollen ankles and wrists, headaches, tiredness, etc.  Ugh, ugh, ugh!

My usual positive attitude began to sink.  I just couldn't believe I could become this sick again and where on earth did bartonella come from anyway?  Well, I don't mean that literally.  Of course it comes from a tick.  Just no one at any time has said it was part of my illness and my mind was focused on other bugs. 

At the same time I began this remedy, I ran out of several herbal detoxes and I thought I would just wait until I saw the doctor again to see if she thought I really needed them anymore.  So I was double whammied with the toxicity levels.  Dr wanted me to cut the dose in half.  I had to order a new box in order to do it the way she wanted.  Through a mail error, the new remedy and herbal detoxes did not come, and it took two weeks to clear the symptoms from my body on my own.  That is also a depressing fact about my condition.  I detox so badly.  According to tests, I always have and that would certainly explain why every year of my life I caught one infection after another. 

During this short time without the herbal detoxers, I lost my ability to sweat not even in my sauna.  Incredible! And depressing to see how I could become disfunctional again. 

The medicines finally arrived last Thurs.  By then I was painfree.  After speaking again with the doctor, she decided to cut the dose to 1/4.  I did.  I also started back on the herbal detoxers and within hours was my old sweaty self.:D

48 hrs after the first 1/4 dose of remedy, I was going to the bathroom (bowel movements) frequently and the tummy ache returned as did the sore heels and during the night last night I awoke with my left wrist hurting and had to put on my brace.  Jeez Louise!

So, other than the great news about the negative babesia test, I haven't had very good things happening lately.  On a scale of one to ten, the symptoms are probably a three, so I don't mean to make this sound like I am in bed and disfunctional.  Nope.  I'm working, riding, cleaning house, etc.  But I was really trying to overcome a feeling of hopelessness at this enormous, seemingly endless war I fight.  Kim's success perked me up as did the new Lyme book I purchased “Insights into Lyme Disease Treatment”.  The first doctor interviewed said his patients who do best never give up the fight.  They keep a positive attitude. 

So, I kicked the blues in the tail and I am ready to fight another day.

I do want to say kudos to Eva who clearly isn't letting illness stop her from living life.  Way to go Eva!

Thank you Maz for asking about me.  It is so nice to have internet friends with whom I can share the “fun”. 

Susan

[Rose]

Jeez Louise is right, Susan, I had no idea you were going through this during our emails lately, but you are a fighter, and you will lick this just like you did the babesia, so hang in there. And kudos to you also… Rose

[Maz]

Susan, it's nice to see you back! 😀 I had you in my thoughts and was wondering how you were doing…just so sorry to hear that you've been going through this rough patch.

You're an old pro and know this is just par for the course with Lyme, but it's still difficult when going through it. Those sneaky coinfections are just the pits, aren't they? Did you get this breakthrough pain in spite of the Enbrel or did Dr Z take you off it now the babs is sorted? I seem to remember she was only going to keep you on the Enbrel for 6 months? Any chance you got reinfected?

Peace, Maz

[Trudi]

[user=86]Susan Lyme/RA[/user] wrote:

…my daughter had a baby girl

What I had no knowledge of was a bartonella infection.  …started me on a homeopathic remedy for it.  That remedy knocked me to the floor. 

So, I kicked the blues in the tail and I am ready to fight another day.

Hi Susan–

Congratulations on another grandchild!!  So happy for you.  I remember you said the baby was due in July and was waiting for the mention!!

I have heard that dealing with these infections is like peeling an onion.  When one layer is gone, it reveals another.  I've been on a new homeopathic remedy since the beginning of August.  I'm supposed to work up to 7 drops 2x a day.  I just can't seem to get past the 4 drops and I'm still hurting.  This remedy has also “knocked me to the floor.”  It is working against mold, fungus, parasites, the Lyme, etc.  My knees and wrists are the worst.

You are right, attitude is everything.  This illness will be beaten!!!!!

Take care,

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Parisa]

Susan,

Unfortunately, peeling the onion makes most of us cry.  I hope you get to the center of your onion soon!

[lynnie_sydney]

Wow Susan, you have been on a roller coaster ride, havent you? We have missed you from the Board. Congratulations on the new granddaughter and I wish you much joy in her and an ocean of pain and blues-free days. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Susan LymeRA]

[user=27]Maz[/user] wrote:

You're an old pro and know this is just par for the course with Lyme, but it's still difficult when going through it. Those sneaky coinfections are just the pits, aren't they? Did you get this breakthrough pain in spite of the Enbrel or did Dr Z take you off it now the babs is sorted? I seem to remember she was only going to keep you on the Enbrel for 6 months? Any chance you got reinfected?

Peace, Maz

Hmmm….sure wish I was not an old pro at lyme.  Yes, I was completely unprepared for a sneaky coininfection.  I got the pain inspite of Enbrel.  I am still on it at half dose and frankly wouldn't mind bumping up to full dose but am really afraid to do that with H1N1 threat looming. 

There is little chance I was reinfected.  I am a hawk about tick checks.  I use a product called Herbal Armour whenever I am around the horses.  It seems to work very well not only for ticks but also flies.  Doesn't work at all on the horses though.  Isn't that odd?  It has such a strong odor, I wait until I am at the barn to put it on.

I will find out Sept 21 if my second bloodtest is still negative for babesia. 

I am still on zithromax which is supposed to be effective against bartonella.  The babesia meds actually took away my babesia symptoms.  Bartonella seems to work in the opposite way. 

Susan

[Kim]

Hey Susan………congratulations, Grandma. 🙂  I just got back last night from spending 5 days with mine which is always a total joy.

Sorry to hear the bugs are messing with you again, but you're doing everything right so your immune system should eventually be your friend again.  I have the full-meal-deal too with Lyme/Babs/Bart.  My Bart symptoms included shin bone pain and pain on the soles of my feet.  All of the neck soreness (which I still have some) could be any of the three.

Losing your ability to sweat without the supps is discouraging.  Even though you now need the supps it's good to hear you're back to your old “sweaty self” again. 😉

Good luck with your upcoming Babs test.  We'll be anxious to hear if you can at last check that one off your list.

Hang tough, Susan, you are on the right track.

kim

[Marie]

Hi, Susan,

I've missed you here, too.  Congratulations on your new granddaughter! 

So sorry about your latest upheaval.  They are never fun. 

[Maz]

[user=86]Susan Lyme/RA[/user] wrote:

I am still on zithromax which is supposed to be effective against bartonella.  The babesia meds actually took away my babesia symptoms.  Bartonella seems to work in the opposite way. 

Susan, don't know if this will help, but I was put on Rifampin for my bartonella for several months. The worst side-effect was tangerine orange urine and similarly colored stools. Also have read that bactrim is effective in some folk, but Dr B (of ILADs tx guidelines fame) recommends levaquin for a period of about a couple months (which I'd personally be concerned about taking, being a fluroquinolone and risk of tendon rupture :sick:). Here's a link to an excerpt from the book, The Lyme Disease Solution:

http://www.lymebook.com/antibiotic-treatment-for-babesia-bartonella-ehrlichia-co-infections

Great news about your babs! Fingers crossed for your follow-up test!

And, Susan, so sorry I missed congratulating you on your new baby grand-daughter's arrival into the world! What wonderful news, Grandma! I must add, too, you don't look anthing like a Grandma in your pic!!!

Peace, Maz

 

[Susan LymeRA]

Yes, I have been reading about rifampin and I have seen what levequin has done to others.  She hasn't discussed prescription drugs with me yet.  She always starts me with alternative meds in the hopes they will solve the issue.  I have that gene test that shows I am pretty much defunct in my ability to remove toxins, even drug toxins.   Also, I think the test tells her which meds I should never take.  I may ask her about that one on the 21st.

Thanks for the compliment about my pic.  I have always looked much younger than my years and I never enjoyed it until I turned 40.  In my 20's I really worked hard at trying to look older.  I even wore my hair in a bun and older outfits while working to try to be taken more seriously.  Nothing made me angrier than when people thought I was my children's babysitter or sister.  Of course, now they think I am the mother of my grandchildren.  Gotta love that one!

Kim,  I'm with you about the grandkids.  I just love spending time with them. 

It feels so good to chat with everyone here.  I'm busier with life and I am trying to limit my computer time as it can really take over your day, can't it?  But I'm still reading and keeping up with how everyone is doing.

It is also nice to chat with people who don't look at you with that “say what?” look on their face when you talk about bartonella, babesia, etc.  😛

Susan

[Susan LymeRA]

Grandbaby fun.

Teagan Lilly Hipes 1 month old and already a Virginia Tech fan.

 

[lynnie_sydney]

She's a beauty, Susan – and what a wonderful head of hair she has. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Ooooooooooh so cute! :blush:  Don't they just steal your heart?

kim

[Susan LymeRA]

Thanks girls.  They really do steal our hearts.  Grandparenting is the most fun thing in the world.

Lynnie, our entire family is blessed/cursed with very thick hair.  I am probably one of the few people who, upon taking DHEA supplements which thin your hair, was actually happy with the results.

I was not on DHEA when my signature photo was taken April 08.  It was misting and my hair was doing its usual bush thing.  I have been known to rub vaseline in the underlayers to help control the frizzies.  😕

Susan

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