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» LymeNet Flash » Questions and Discussion » Medical Questions » Long-term Babesia treaters - please check in!

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Author Topic: Long-term Babesia treaters - please check in!
BoxerMom
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I've added/rotated several new meds and herbs this round.

I feel my Babs has become partially Atovaquone resistant, as Mepron and Malarone don't have the effect they used to.

I've rotated Alinia and Albendazole. Some Ivermectin.

Added colloidal silver, Cryptolepsis, A-Bab, plus a few others, but those are the strong ones.

Artemisinin still works very well for me.

I am back in major herxville!! Especially with the herbs and silver. I mean, Holy Cow!

New symptoms more than old symptoms, which is disconcerting, but it has been my pattern. Old symptoms resolve, new ones show up. Some just stick around.

Of course I'm thinking Protomyxzoa, so will continue the antiparasitics.

Mostly, I just want to know that I'm still chasing Babesia. I know I am, but the Babesia anxiety always has me questioning.

Babesia treaters, please check in and let me know your pattern as you treat this horrid infection long-term.

Continual improvement? Ups and downs? Major herxing after many years of treatment?

I had this thing in remission once, but since my relapse it has been a nightmare.

Thanks for your input.

--------------------
 - Must...find...BRAIN!!!

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desertwind
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Had been in remission for about a year but think I am flaring again. Having a pretty intense reaction to liposomal ART, but also started on liquid/compounded nystatin as well so who knows.

I have had a week long headache/throbber/pressure/pain that started when I went back on ART/Malarone/Doxy/Zythro. Back of skull surgery and steriods 2 months ago has caused everything TBI to flare.

I had great success with Alinia and LLMD wants me to add that back in but that is alot of meds.

I always felt great on Alinia...perhaps I will drop Malarone and add Alinia. I am wondering about FL1953.

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gmb
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BoxerMom,

I resemble your remarks.... and am on a very similar protocol based on following this topic and your posts closely.

For me its been a slow roller-coaster with gradual improvemnts, then swift setbacks when making changes. Fatigue, brainfog, neuroprophy, and sore/heavy large muscles cycle in severity frequently.

I've given up on mepron too, and going the herbs route with some ABX support and alternative remedies.

Can't wait for Buhners book on Babs due out within a year. (Also hope I beat this down before then).

later

gmb

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BoxerMom
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I will add my new symptoms:

Dizzy like rocking on a boat (classic Babs)
Facial twitching
Heart palps and valve issues
Mucus draining from eyes (Bart for me)

Ongoing:
Headaches
Tinnitus
Facial pain
Sleep disturbance
Weird nerve sensations
No appetite
Blood sugar dysregulation

Resolving:
Air hunger
Fevers
Sweats
Afternoon crashes

All my symptoms are intermittent now. I have symptom-free periods every day, and many days are symptom free.

But when I do have symptoms, they can be severe. What gives?

--------------------
 - Must...find...BRAIN!!!

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BoxerMom
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Desertwind - sorry about the relapse. Frustrating!

I also had a major herx when I started Liposomal Art and Alinia. That was my Rocking on a Boat herx, with resolution of ALL symptoms after that huge herx.

It was awesome. Had a great week. Still on meds/herbs.

Then symptoms returned.

So I'm hitting this infection hard, as that seems to be the best approach for me.

Also, YES to the major headaches. My headaches have been mild to non-existent for a year. Now, they're ba-aaack.

Gmb - I knew you'd show up here. And now I know why we are basically twins. Please continue to report your progress. I will do the same.

--------------------
 - Must...find...BRAIN!!!

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Pocono Lyme
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Primaquine is the only med to get the dormant babs. That made a difference for me. Two weeks of primaquine to get the dormant form and follow with something to get the bugs in your blood.

I have read to do something for the bugs in your blood first and follow with Primaquine.

I felt by getting the dormant form first I would get whatever ones escaped back into the blood with Coartem or Chloroquine.

What ever you choose but the Primaquine I think is essential in getting rid of it.

That rocking on a boat was awful. Just as bad as the feeling of walking on an air mattress symptom.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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BoxerMom
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Pocono Lyme - YES! That is my mission at my next LL doc appt.

"Radical Cure" as they say in Malaria. Get the hypnozooites in the liver. Primaquine/Chloroquine.

Thank you for the reminder and I'm relieved to hear it made a difference for you.

--------------------
 - Must...find...BRAIN!!!

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Pocono Lyme
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[Big Grin]

A friend and I did the treatment at the same time. It was strange in that she felt so much better with the Chloroquine and I felt better with the Primaquine.

I hope your next appt. is soon. I hope it is the answer for you.

I'll mention it here before I forget about it.
I received an email a while back titled historical photos.

One of the photos had a sign with two skulls on the top of it and it said these men didn't take their Atabrine. (I've never heard of it)

This was written below the photo:


Advertisement for Atabrine, an anti-malaria drug. Sign was put up

at the 363rd station hospital in Papua, New Guinea during WWII

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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ktkdommer
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Have you tried Coartem? Oldest diagnosed last month with babesia duncani. This would explain 3 years of treament. New doc switched him to Thorne's artemesin.

I copied what Pocono said to discuss with doc. Maybe it is an option for us.

--------------------
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.

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Catgirl
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Are you treating parasites (makes a difference for me). Also, how long are you taking the lipsomal art?

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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BoxerMom
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ktk - I tried to get Coartem last appt but my (LL!) doc had never heard of it. Really??!!!

So I opted for Alinia, which she had also never heard of, but prescribed anyway.

I'm going to order Artesenuate and Artemether (in Coartem) online. I think they will pack a punch.

Catgirl - yes, I've treated and continue to treat parasites. I should probably do coffee enemas again, as patients are reporting such great results with "getting stuff out."

Pocono - HA! Good to know infectious disease was taken seriously at one time. (OK, I know there is a global effort to wipe out malaria, but we are being told we're fine and left to suffer and die.)

I would love to see a Lyme poster with skulls! "These people relied on the CDC and IDSA to diagnose and treat their Lyme."

--------------------
 - Must...find...BRAIN!!!

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BoxerMom
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I'm pulsing Liposomal Art with Super Artemisinin. 4 days on, 3 off. On my second month.

--------------------
 - Must...find...BRAIN!!!

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TF
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You said: "But when I do have symptoms, they can be severe. What gives?"

I believe these are babs flares. Babs flares can be unbelievably severe. I was symptom-free when I began treating babs but the treatment caused me to have horrendous flares weekly out of the blue. The flares made me totally non-functional. (Some say that babs flares every few days instead of weekly. Yours may cause very frequent flares.)

The trick in my case was to take the art to encompass the flare. So, as soon as you start flaring, take the art. And, take it until the flare is totally gone.

If you can see a pattern to the flares, start taking the art right before the flare is scheduled to hit. And take it for a few days.

This worked like a miracle for me. Hope it helps you!

The art cut the flare down to nearly nothing the first time I took it this way. The flares got less and less each week thanks to the art.

I was instructed to take the art on an empty stomach twice per day.

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BoxerMom
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TF - I think you are right. I can't find a pattern to my flares. They used to occur daily, in the late afternoon or early evening, which is the Malaria fever pattern.

The daily flares are gone. Rare afternoon crashes.

I will try to find a pattern. Overall, I am still improving, so I will just keep after this Babs.

--------------------
 - Must...find...BRAIN!!!

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Catgirl
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quote:
Originally posted by TF:
The trick in my case was to take the art to encompass the flare. So, as soon as you start flaring, take the art. And, take it until the flare is totally gone.

Great advice from TF. :)

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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CD57
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I have to wonder if you haven't hit babs so hard, that bart is now showing up again. It's been awhile since you treated that, right? Why not throw bart meds in the mix and see what happens?
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BoxerMom
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CD57 - that is what happened in the past. When the Babs' load came down, the Bart symptoms showed up.

I can't take Levaquin or Bactrim, or any in those classes. Rifampin is good, but it speeds up liver enzymes, so it's hard to maintain blood levels of other abx.

I'm on Biaxin, which is a decent Bart med. And I've been taking Resveratrol forever.

Basically, when I drop too many Babs' meds, Babs flares overnight. That has never been the case with Bart.

I skipped meds last night, so I'm not herxing so much today. These last few days have definitely been a huge Babs' herx.

It sucks to think my pathogen load could still be that high, but it confirms what I suspected. I need to keep plugging away at Babs.

gmb has been posting about his switch from Atovaquone to strong Babs' herbs. He also got sent right back to Herxville for several months, but is starting to pull out of it.

This is a tenacious little pathogen. You just have to keep treating.

Some people do go off treatment and their symptoms slowly diminish. I'm not ready to try that yet.

--------------------
 - Must...find...BRAIN!!!

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BoxerMom
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quote:
Originally posted by gmb:

For me its been a slow roller-coaster with gradual improvemnts, then swift setbacks when making changes. Fatigue, brainfog, neuroprophy, and sore/heavy large muscles cycle in severity frequently.

This is me, too. For sure.

My cycling symptoms are brain fog, tinnitus, facial twitching, facial and teeth pain, cough, sore/heavy/weak leg muscles, headaches, depression, sleep disturbances.

My hip pain has largely resolved. Fatigue is better. Air hunger is rare.

OK. All we can do is keep moving forward.

--------------------
 - Must...find...BRAIN!!!

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gmb
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Ditto on sleep disturbances. Its almost like Bill Murrey waking up at the same time on Ground Hogs Day. My time is 3:00 am.

I use to also have a minor cough with some flem. Now when Babs flares my voice gets a bit horse and I need to clear my throat often (FL1953 maybe?)

Another very odd symptom that's not high on my list because its mostly cosmetic is the frequency of spontaneous buising. They typically occur on a regular 6 or 7 day cyle, appearing mostly on my arms and thighs.

Since this last setback I have been recording and photographing bruising at increased frequency to sometimes multiple new marks on a daily basis.

And did I forget to mention sleep issues on days leading up to a full moon... ooooouuuuhhhhh

later

gmb

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BoxerMom
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The early morning waking is one of my most destructive symptoms.

I can deal with the others if I'm well-rested, but being chronically underslept destroys me, birth physically and emotionally.

I know it wrecks my immune system and sets off all sorts of inflammation. It also makes me too tired to engage in life and too tired to cope with being sick!

It is just like Groundhog Day, without the humor and happy ending.

I am also getting the bruising, which is brand new for me!

Arms and legs. We have two large young dogs, so some is dog jumping and dog play. But I am waaayyyy more bruised than I should be.

D-ribose helps my sleep if I take the full 15 grams/day.

Vit C is good for strengthening capillaries.

--------------------
 - Must...find...BRAIN!!!

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faithful777
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I had continual improvement on mepron, arteminisin and cryptolepsis. I did some natural homeopathic stuff but am symptom free. I was also on IV Clindamycin which hit Babesia. Other orals were ceftin, bactrim and flagyl.

I also do B12 injections daily. I have the MTHFR gene problem so I also do deplin daily.

I am now weaning off the sleep meds. Melatonin seems to be enough now to get me to sleep and I sleep all night. Rest is essential for your immune system so it makes sense that when you are not rested enough, we are all a wreck that day.

Lyme is in remission and the only thing I am dealing with is getting my stamina back. I have to pace myself and I get tired if I do too much, but that is expected when you have done nothing for a long time.

--------------------
Faithful

Just sharing my experience, I am not a doctor.

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surprise
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I'm sorry, I am not a babesia person, can I please ask-

Boxermom and gmb- the Groundhog Day, early waking no matter what time going to bed- is my MOST annoying

symptom. I've had it forever! I am off all sleeping pills, use a little melatonin to fall asleep, force myself in bed lights out by 9 pm most nights-

Okay, so Chinese say liver- it's not my liver. My thyroid, etc., normal. Through Bart treatment, this symptom has abated at times...and with Bart treatment, frequent waking and night time urination is better.

But if I wake, look at the clock, and it's 5 a.m., it is a bloody miracle. Because when I wake at 3:30- 4 a.m., I am UP for the day.

Currently doing herbs- for adrenal, Buhner Bart, also do parasite treatments week up to full moon-

Full moon affects me- I've done rounds and rounds parasites.

Do you think Groundhog Day is from parasites?

Sorry so long, this is the first I've heard this talked about- it plagues me. Now looking into buying d-ribose too.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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BoxerMom
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Surprise - for me it is HPA axis dysregulation.

I thought it was adrenals and treated them for years with no improvement.

After 15 years of this symptom, I finally got my Lyme dx. I had started D-ribose the month before, so I had passed my loading dose of 30 days at 15g/day.

The combo of D-ribose and Babesia/Lyme treatment resolved this symptom. It was a freakin' miracle. Honestly, I don't know how I would have survived my first year of Lyme treatment with my "usual" amount of no sleep.

All during my Lyme treatment I've needed to maintain the 15g/day dose of D-ribose. If I reduce my dose for too long, the sleep disturbance returns.

D-ribose is fuel for the HPA axis. I also take Phosphatidylserine, but I can slack on that one.

All brain infections/inflamm can affect the HPA axis, as can loss of certain nutrients. For me, Babs is the big culprit.

It's not a stretch to say that Bart could cause this, too.

--------------------
 - Must...find...BRAIN!!!

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CD57
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WOw, you've taken 15 grams of D-Ribose this whole time?
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BoxerMom
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When I'm not slacking. [Big Grin]

If a healthy person did this, s/he would probably get superpowers.

Life is so unfair. [Frown]

--------------------
 - Must...find...BRAIN!!!

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surprise
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Thank you------

I read up on d-ribose, 15 grams is the starting dose for at least a month, doesn't seem like a crazy high amount thereafter if that's what you need... I am a very small person,

not sure how much to try, but am buying this to try. Read a lot of good reviews about it also helping muscle pain.

My daughter, who I've treated for years (long story)
PS100 (phospatidylserine) was a WOW supplement for her-
I never tried it $$$

Thanks again for your wisdom. I have more to learn.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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BoxerMom
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Def get that full loading dose of 15g/day for a month.

I don't think your weight matters. I was a tiny twig at that point.

And stick with it! I noticed nothing at first, but I stuck it out. I swear, at week five my whole world changed.

--------------------
 - Must...find...BRAIN!!!

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gmb
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Surpise... I can't add too much... I'm way behind on BoxerMoms research and experience in these areas.

I try to get to sleep at 9pm also. I do take 10mg melotonin and 600mg Gabapentin around 8:30.

I don't have any trouble getting to sleep, but wake-up frequently thru the night. It's that damn 3:30 time where I can't get back to sleep, and my normal wake-up time for work in 5am.
My guess is Liver activity from Babs or other parasites

BoxerMom... I'll look into the D-Ribose

thanks

gmb

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RC1
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If you are mold succeptable it could be what is continuing to cause Babesia like symptoms, I'm not saying that its not Babesia, but I know from experience that living in a house with an ERMI greater than 2 will cause ongoing symptoms.

Also even if your house is safe enough when you go out and get exposed it will cause symptoms.

My LLMD says the people that are also mold succeptable are the hardest cases. Our bodies protection (ability to detox) mold gets wrecked from the Lyme.

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Bitten in Bergen
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Yup RC1 - I also am mold susceptible and we are in the middle of a mold remediation at our house.

In the meantime, I've been on and off treatment for babesia for almost 2 years now. In the beginning, it was mostly mepron/zith or malarone.

I JUST started a new protocol with my new LLMD. It includes:

liposomal artemisinin (pulsed 1 day a week, 2x/day)
Beyond Balance BB-2 (daily)
Vitalguard Supreme (twice daily)

Also doing detox (liposomal glutathione), chelation (parsley, EDTA) and binders (first charcoal, now cholestyramine).

For now, just tired a lot, but in between, not feeling as crappy as usual. Even walked the dogs 2 days straight. For me, that's HUGE.

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mlg
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Haven't read all the replies but did read your symptoms. I believe it is fl1953(proto).
I was on Mepron zithro and treated for like 8 months. Then added bacterium for another month then cycled on some antibiotics for kidney infections. Then started with new LLMD rotating anti-parasitics. And now will start with clindamiacyn with quinine art pulsed, heparin, pulsed crypto. Plan B is coartem. I also tested positive for Babesia duncanti.

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beths
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Try Zhangs Artemisia 2 Capsule. "Its active ingredient is Dihydroartemisinin (DHA), a derivertive of artemisinin. It is a front line anti-malaria agent and has been effectively used for millions of malaria cases. It is much stronger than artemisinin and also has less adverse reactions."

I take that plus 1 liposomal artimisin-made me herx again.

This was after IV clindy, regular artimisin, crypto and enula did nothing

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BoxerMom
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Beths - I have been wanting to try that. Thanks.

--------------------
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gmb
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BoxerMom and all,

I'm due in with my LLNP tomorrow after work.

My current protocol pretty much since April has been Mino, Bactrim DS, alina 2x/day with the Sida/Crypto/Alchornia blend 1tsp 2x/day; TindaMax pulsed two days/week; GSE 20drops 2x/day; and Salt/C 1tsp 2x/day. Alinia is the latest addition starting in early June.

I plan to discuss parasites and ask to use Parastroy or get her recommendation.

Since I'm just recovering from a major Babs herx/flare since stopping long term Mepron/Zith, I want to stay with this protocol a bit longer and maybe ramp up the herbal and salt/c dose a bit.

Beyond that what do you recommend for my next Babs ABX or Herb. I have not done Coartem yet. I mentioned Ivermectin (sp?) to her once and the suggestion was was not received too well. I will also mention Primaquine.

Thoughts?

gmb

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seibertneurolyme
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gmb,

I would suggest ivermectin. That med has one of the best side effect profiles around -- very little side effects and few interactions. You may just need to get the horse paste from Tractor Supply and try it yourself if your doc is not receptive to that med. Sometimes you do what you have to on your own.

Or you could double up on the dose of the sida/crypto/alchornia or add in the new Buhner herb -- forget the name, but look up the conference notes I posted.

I would also probably add in high dose malarone to the mix.

Also you might add in artemisinin -- think that will do more than coartem. Or you could try ECGC.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert

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Keebler
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Just wanted to add this:


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/115218

CRYPTOLEPIS sanguinolenta
-

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BoxerMom
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DO NOT stop Babs' treatment. People do reach remission (as unlikely as that feels most days), and you are on your way. No setbacks.

Many options:

1. Ivermectin, as Bea suggests. It had weak Babs' effectiveness for me, but the response to this one seems very individual.

2. Change Tini to Flagyl and increase the number of pulse days. Both have moderate Babs' activity for me, with Flagyl being stronger.

3. Switch Tini to Diflucan and increase number of pulse days. You need 200mg 1x/day. Diflucan has been one of my absolute best all-around meds. Kills yeast, pops cysts, and has high Babs' killing activity for me, esp in combo with other Babs' killers.

4. Increase herb dosing, either in amount or frequency.

5. Switch Alinia for Albendazole. Alinia is for protozoans. Albendazole for helminths. Both have moderate Babs' activity for me, increased when added to other meds/herbs.

6. ESSENTIAL: Where is Art? Did you forget to list it? Add Art as a four-day pulse. You could also consider a stonger Artemisia derivative like Artesunate, Artemether, or Zhang's Art. I can provide links for those.

7. Add Plaquenil. That is a decent Babs' med, esp in combo.

OK. That's off the top of my head. If it was my appt, I would ask for Diflucan and add Art. If herxing increases, you are golden. If not, increase herbs. You can increase Art as needed, too.

Happy hunting.

--------------------
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BoxerMom
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Oh. Duh. Primaquine/Chloroquine if you feel you are ready.

I always forget that one. It's like I have a brain infection or something.

Don't know if LLNP will know how to dose. You would think so, but, then again, they all have their comfort zones.

I can PM you what someone PMed me about dosing, if you need it.

I love how it takes all of us to make a successful doctor visit. [loco]

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MannaMe
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surprise, what is a good brand of the D-ribose?
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surprise
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MannaMe: I did not like the D-ribose- could have been the brand (NOW) but, I could tell right away, it's not for me.

(Sorry for butting in on the babesia thread)

I'm not sure why I feel so negative toward it- I wasn't 'amped'
perhaps it was a blood sugar type reaction. Sorry- not for me.
*sigh* wasn't cheap, either.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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BoxerMom
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Someone on this board researched D-ribose a few years back.

Corvalen has its own version, plus they are the supplier of raw materials to all other brands.

When you buy Corvalen, you get pure D-ribose. Unless you buy the one with Magnesium added.

Other brands may add fillers or other nutritionals to their products. They often taste different to me.

I've tried maybe four brands. I always go back to Corvalen.

--------------------
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gmb
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OK..... Thanks for all the suggestions.

Since I have had some recent improvements since my Mid-March Babs flar/herx, my LLNP and I decided to stay the course for one more month to give alinia a little more time.

In 30 days if no changes, I drop Tini and add Diflucan, then start to increase dose of the sida/crypto/alchornia herbal blend. I had forgot to include that I also take Cats Claw tincture 1tsp 2x/day.

Plan B is to drop all ABX and herbs for 30 days and do a round of coartem, (one week on, two weeks off, then one more week on). Risk here is if my PCP will agree to let me drop Atenolol, my BP beta blocker that is contrained with Coartem.

I'm open to adding Art or a derivative, but just that Buhner is so strong on recommending Sida and Crypto over Art... and there is only so much $$$$ to spread across Rx and Supps.

She also discussed adding coloidal silver, which is on my long list. Maybe I'll move that up the list

later,

gmb

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BoxerMom
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That sounds great. Keep us posted.

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beths
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Boxermom-Diflucan hits babesia?

I am off abx-on Zhang artimisin, liposomal artimisin (1 of each, 2x/day), crypto and enula.

and Diflucan 1x week- I just finished a 26 day pulse of 200 mg diflucan daily which just about trashed my stomach

Thoughts? I'm not sure I still have babs symptoms..muscle aches, occasional hot flashes (but they could be hot flashes, LOL) and thigh cramps, twitches.

Anyone knock out the remaining babs with herbs? I have taken enough malarone/mepron to kill an elephant.
I added in magnesium as I wonder wth the heat if the twitches are from dehydration.

Also, want to mention to those that take binders-they can leech out minerals..may need to supplement

[ 07-19-2013, 05:20 PM: Message edited by: beths ]

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BoxerMom
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beths - it definitely hits my Babs. Hard.

I've wondered if it's because of liver detox pathways being overwhelmed, making other meds stay in the system longer, but I don't think that's the case.

I've taken tons of meds that overwhelm the liver (it's kind of a lifestyle around here), and I don't get the same response.

So yeah, Babesia for me.

I've never taken it solo, only in combo.

As always, YMMV.

The Babesia herbs I am on right now are much stronger than the meds! I don't know if you can finish Babs' treatment with only herbs, but if that is what you can tolerate, it's worth a try.

Great reminder about the minerals! Thanks!

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mlg
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Bartonella Lyme Tincture (BLT) by clinical response seems to hitting babesia symptoms.
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GretaM
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Great info here!

Thanks for the thread, Boxermom [Smile]

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nefferdun
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"My cycling symptoms are brain fog, tinnitus, facial twitching, facial and teeth pain, cough, sore/heavy/weak leg muscles, headaches, depression, sleep disturbances."

I never heard of babesia causing pain in the teeth. That is classic protomyxzoa as are all of your other symptoms. Babesia makes you sleepy. PR gives you insomnia. You also get twitching, headaches, depression, brain fog - everything you listed and then some.

Yes, your muscles will be sore, achy and might even cramp. You can also get stabbing nerve pain. It causes blood to pool so yes to bruising too.

I sound like a broken record - low fat diet.

The fact that you are getting better with anti-parasite drugs says a lot (I would like to know how you dose alinia and albenza if you don't mind). But you just have to stick to the low fat diet to actually get into remission. That is the only way out of it. It is annoying but not following it is worse.

If you do decide to give chloraquine a shot, be careful. It stays in the blood for 40+- 14 days so if you have a side effect it will take longer to wear off. I had a huge reaction to it.

Chloraquine can cause your thyroid to become hyper, which it did to me. I was a mess. LDN settled things back down again but I was really scarred. I also had primaquine but never got the nerve to try it after what chloraquine did.

After awhile, for me anyway, the drugs just don't work any more or I develop side effects to them that are over the top. If there is any chance you have PR, you need to use the diet as part of your treatment or you will never get completely into remission and sooner or later, the stromectol etc. will not work or the side effects will be too much to handle.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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nefferdun
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Also forgot to mention that PR causes auto immune attacks like Hashimoto's which you might have and not even know you have it. Taking chloraquine could make it worse.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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gmb
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Update....

No significant changes after another 30 days on Alina (started in May), except for less sleep disruptions, and some improvements with neuroprophy.

Fatigue, brain fog, and heavy/sore arms and legs are my worse symptoms. Spontaneous bruising and red rash marks (not like bart)have continued almost daily.

Today I add in 200mg Diflucan once a day for a month, and drop the Tindamax pulse. I've increased GSE from 20 to 25 drops twice a day. Backing off Salt/C a bit maybe for a week.

Rest of protocol remains the same: Alinia, Mino, Bactrim DS, Gabapentin, Atenolol, GSE, Crypto/Suda/Alchornia blend, Cats Claw, Fish Oil, ALA, Milk Thistle, Garlic, Vit B-6, B-12, D3, Melatonin, Magnesium, Chlorella, Braggs ACV, lemon water, VSL#3-DS and Florastor.

I've considered the recommendations of adding Arteminisin Essentials from Hopkington Drug. But have decided to first try Coartem while I still have insurance coverage, before ObomaCare changes hit.

My LLNP sounds very cautious with Coartem and said its best to be off all Rx and other supps while taking it over a 30 day pulsed course.

I think I will have to stay with Milk Thistle, lemon water, chlorella?? and the probiotics thru that time...

Think of anything else I should take with Coartem?
A month off the pill wagon train sounds pretty good.

gmb

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RC1
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Gmb,
Coartem affects the QT interval so you just have to be careful with that. Macrolides, Diflucan, and Tinamax are out. I have taken it with Mino and Ceftin. I continued my supplements.

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gmb
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It also messes with Beta Blockers so I needed a 1 month pass from my PCP to stop Atenolol. One good thing thru 15 months on IV was I had my BP taken weekly on nurse visits. For some reason my BP has been the lowest in many many years, and I have been on 1/2 dose for three months now, so maybe time to quit it anyway.

I think my Buhners herbs and other supps would be OK too, but my LLNP is cautious at times, even though she has had me maxed on Rx thru most of my treatment.

I think Magnesium would also be important to stay on given my frequent calve cramps upon awakening when making that first stretch of the ol' legs.

thanks... how did coartem work for you?

gmb

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Catgirl
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I agree with Mlg and Nefferdun. My cycling babs/proto like symptoms are occasional air hunger, am sweats, chills, occasional hot flashes, occasional stiff neck and occasional insomnia. I think I have both babs and proto (have other proto symptoms), but my babs symptoms could just be proto or a mix. I also have more co infections.

For someone like me, the best way to improve is to focus on the proto and cut the fat because it cuts the biofilm so I can get at the rest with meds, herbs, parasite stuff, etc. No one would know they have this bug unless they were looking for it. Some proto symptoms have been considered to be babs, which is why so many docs miss it. I thought all of my babs/bart like symptoms were babs and bart (not the case).

Anyone dealing with babs should consider proto, especially if they can't get rid of their unrelenting babs symptoms. This bug is more common than you'd think. I'm pretty sure I've had it for at least 30 years and never even knew it (had some proto symptoms back then).

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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RC1
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I really like it because its so easy to take, after a round of it I'm completely symptom free of Babs for a couple of weeks. It creeps back though.

Now I am pulsing it every 10 days and doing Artemisinin pulses in between. This seems to be working.

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BoxerMom
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RC1 - I would like to hear your Coartem schedule in more detail. Could you PM me?

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gmb
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Started Coartem on Saturday. So far I only had mild early morning sweats upon awakening at 5 am today. I haven't had any sweats in a long while, and never anything heavy.

My LLMD said I should see some symptoms flare in the first 3 to 5 days, so I see this herx as positive that it's hitting something and not wasting my time.

I think BoxMon should also be starting her round pretty soon.

I'm doing 2 pill twice a day for five days then take seven days off, then repeat. I stopped my Atenolol and all ABX on Thursday. I also stopped CSA blend, Cats Claw, and GSA earlier last week to clean my system.

I'll keep posting on progress.

later

gmb

[ 09-23-2013, 08:21 AM: Message edited by: gmb ]

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Yesterday I completed the first five days dose of Coartem. Other than the one morning of mild night sweats it has been pretty uneventful.

This morning a woke up with less tingling in my feet, slightly less foggy head and reduced pressure in the brain. I had pretty good day.. the best in many months

My only concern is that over the past week to ten days I think I've gained about seven or eight pounds and am a bit bloated in the gut.

I can't see how Coartem would be the cause.

Two weeks ago on Sunday 9/15 I stopped taking Crypto/Sida/Alchonia blend, Cats Claw, and Atenalol.

On Thursday 9/19 I stopped Diflucan, mino, alinia, and Bactrim.

Does anyone see what may have caused a metabolism change to contributed to the weight gain? I did read in one of Buhner's books that Sida does contain a small trace of something that they use in higher doses in with weight control meds.

Any help?

gmb

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lymeboy
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Boxermom, I believe my Malarone/Mepron treatments may have become resistant as well. I feel horrible. Depressed and suicidal thoughts, Malaise, grumpy, woozy, I just feel SICK in and out.

I have the entire list of parasite abx you've mentioned, but hesitate to start because of my already high abx load. My liver can only do so much.

Art only made me feel lousy. I don't think it was a herx, it felt more like toxicity. WHen I stopped, I started to feel better.

Could you tell me how you rotate these drugs? do you take them at the same time as Mepron/Malarone? Did you first try an herbal parasite treatment? Did you drop some of your herbs first?

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gmb
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lymeboy,

try listing your meds later today. BoxerMom is on the left coast and mostly posts later in the evening. If you post late in the day she may have better chance to see it listed higher on the page.

gmb

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BoxerMom
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lymeboy - There is no right combo for herbs and meds. It is largely trial and error.

I cannot get by on just meds anymore. Resistance? Maybe. I'm also down to the deeply entrenched lingerers, and they are hard to reach.

And I'm not clear on what remains unaddressed. Viruses, certainly. Maybe more.

You certainly describe how I feel during a Babesia flare. If Art doesn't feel right, start trying others. Grapefruit Seed Extract is good. It's cheap at Amazon.

Cryptolepsis and Sida Acuta from Woodland Essence are helping people.

I bought high concentration stabilized oxygen (tincture) and I'm getting good die-off plus improvements in mood.

Most herbs are compatible. Do your best to protect your liver. These infections have done worse things to my liver than any abx or herb.

I hope this is helpful. Feeling cruddy today, so can't put together a more thorough response.

Mostly, pick something to try so you don't keep backsliding.

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Keebler
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Similar thread with complementary detail:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125114

Topic: Long-term Babesia treaters - please check in!

also started by BoxerMom - July 12, 2013
-

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GretaM
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I took A-BAB for the first time yesterday, and CSA in pom juice yesterday.

This morning I had the runs.

I am trying to figure out if it's a herx, or a reaction to A-BAB or something I ate, or a stomach flu.

Has anyone else had the runs with A-BAB?

Thanks.

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beths
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How much CSA are we suppose to take?
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gmb
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From Buhner's web site:

"Dear Stephen,
Please post the dosage for Sida acuta, ailanthius and whatever else you are now recommending for babesia that is not in the book…Thank you.

Stephen’s response:
Sida acuta: ¼-1/2 tsp 3x daily, Ailanthus: from 5 drops 3x daily to ¼ tsp 3x daily. Sida acuta/ Cryptolepis/ Alchornea cordifolia blend: ¼-1/2 tsp 3x daily. You could as well do ¼ tsp of each of these three tinctures 3x daily."

My comments:
Some say higher doses are needed. I ramped up to 1 tsp 2x/day for about five or six months with no noticeable improvements.

gmb

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GretaM
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For detox I am

-drinking detox tea (burdock, nettle, dandelion, lemon),

-Eno (Canadian version of Alka Seltzer Gold),

-dry brushing,

-Epsom salt soaks OR Epsom salt cream

-Drainage Tone (Energetix)

-Liver Tone (Energetix)

-Milk Thistle

-Ornithine

And honest to goodness my energy level is good today-but I am SO darn cranky!!!!

Argh!!! Grrrr!!!

Why the crankiness? I normally attribute crankiness to bartonella.

Was anyone else cranky when they started babesia treatment?

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BoxerMom
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I hated everyone.

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GretaM
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Haha! Ok thanks Boxermom!

So I know what to expect for the rest of the Christmas season...

Any other strange herx symptoms in store for me?

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GretaM
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Noticed sore ribs and leg joints last night.

Bit of a headache today-doing some IV glut.

Gonna reduce the drops of A-BAB today.

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
GretaM
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IV glut is a godsend. It really is.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
   

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