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» LymeNet Flash » Questions and Discussion » Medical Questions » Babesia is going to be the death of me...

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Author Topic: Babesia is going to be the death of me...
lymielauren28
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I haven't posted in a long time. Babesia. Ugh. I don't even know where to start. It's been a long, hard, lonely battle. Over the past 8 years of done Mepron (year and a half), Malarone (2 years), buckets of artemisinin, flagyl in massive doses, cryptolepsis, coartem, salt c, and rifed until I'm blue in the face.

Everything *helps* for awhile, but nothing has been a cure, and inevitably my babs becomes resistant to whatever I'm taking at the time and it never works well again. What gives? I feel like I'm out of options. I have horrible (unbearable!) pressure in the back of my head, severe neck and shoulder pain, I can't think, I can't sleep, I can't eat. I feel weak. I have no balance and I feel like I'm in a constant fog. I'm boiling hot one minute and teeth chattering cold the next.

I want to die. For the first time in eight years of dealing with Lyme and co's I can taste defeat. I'm afraid. I'm tired. Down in my soul tired. Today is my 34th birthday and all I can think is, "Will I make it to 35?". I'm at the end of my rope and hanging on by a tiny thread. **Sob**

[ 10-12-2013, 11:56 AM: Message edited by: lymielauren28 ]

--------------------
"The only way out is through"

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GretaM
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Hi Lauren,

Happy Birthday. It sounds like you are having a pretty rough birthday so far.

I can relate to the feeling of defeat-and on a birthday. Strange how birthdays bring those feeling up.

I can't help you with advice for babesia-bartonella seems to be my nemesis.

Have you connected with Bea? Or Boxermom? Bea's husband battled babesia and Boxermom fights it daily-maybe sharing your experience with them will help.

The head pressure and shoulder pain and stiffness are my bartonella symptoms. (some symptoms...sigh)

Have you ever treated bartonella?

I just wanted to offer you some support and send you some hugs today.

The most memorable battles are ones where the underdog rises up despite all odds, and defeats the enemy.

Don't give up.

Greta

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Ellen101
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Perhaps it is time to look elsewhere. Have you been tested for other possibilities? My LLNP said sometimes Lyme ignites the fire but after awhile its no longer the Lyme that is the issue. People spend yrs on antibiotics, hitting it over the head when in fact other issues are now the cause.

Severe neck and shoulder pain can have other possibilities. Have you had any mri's, cat scans etc done? Any blood tests for possible food allergies, conditions like ankylosing spondylitis,etc. ?

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tdtid
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I'm not a doctor but I can talk to you about my experiences since I thought Babesia was going to be what took me down as well.

Like you, I too went through so many rounds of Mepron with Zith, tossing in artemesia and cryptoleptis. Also did Malarone although my LLMD said that Mepron was much stronger so as long as it isn't an insurance problem, he preferred that.

The only other med that I recall off the top of my head was Coartem and maybe you could ask your doctor about that. BUT.....

Something that I found my doctor did is that he would bounce around and treat me for Bartonella or else Lyme and THEN go back to the Babesia. He never seemed to keep me on Babs treatment for more than 6 months before giving my body a break and moving on.

They say that you won't get any of it under control as long as there is something else outstanding. I went through parasite cleansing, metal detoxings...all sorts of things in between the Babesia treatment and I am in long term remission now and living life.

But it was a long hard battle and you just had to keep bouncing and trying various things. Good luck to you and hopefully your doctor can find the right treatment for where you are. Hang in there and keep us posted.

--------------------
"To Dream The Impossible Dream" Man of La Mancha

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lymielauren28
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Thank you all. I've talked to Bea here on lymenet many times over the years and know her story well. I've read over Boxermom's threads until I probably have them all memorized haha. I feel like I can relate to Boxermom's story the best - her story and symptoms are me to a T.

I was in remission for two years and then was reinfected two years ago and have had hell with babs since. I really don't think Lyme is an issue anymore. I do have Bartonella on top of the babs. Every time I get Bart down and start making headway there the Babs gets out of control.

I've been doing well for a few months and then added Crypto at 3 tspns a day and have gone downhill since. It brought out babs in a way I've never experienced before. At first I thought it was a herx so I stopped everything for a week and just continued to go downhill. What's up with that? I thought Crypto was supposed to be the best new thing?? So confused.

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"The only way out is through"

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BoxerMom
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Lauren - Happy Birthday! Sorry it doesn't exactly feel like a celebration. [Frown]

Two things: That reinfection is key. Do you know if you had B.microti or B.duncani the first time?

The re-infections invariably have B.duncani, or whatever is cross-reacting with the test to get a positive for B.duncani. Another strain of Babesia, or another protozoan.

That bug is everywhere now! It is a virulent little b@st@rd! You need more time in treatment for this animal. Two years is probably not enough.

The Cryptolepsis response is curious to me. I do suspect herx, and here is why:

Second thing: Babesia sends my inflammatory markers straight to the moon! All the Shoemaker ones, that can also indicate mold exposure. This is a d@mn toxic bug! That's how it makes people so sick.

I've been treating aggressively (as always) and my C4a, previously stratospheric at 57,000, has broken orbit and shot to 65,000. What the ????

Now, I feel the inflammatory response to every food I eat. Foods I could previously tolerate now make me inflamed. And it's my Babs symptoms that get worse. Head pressure, brain fog and fatigue are the worst, but also weird ones like dry eyes and itchy scalp.

All inflammation.

I always correlated worsening symptoms with herx or flare, and this is certainly true, but now I'm seeing them as straight-up inflammation.

And it creates a vicious cycle of inflammation suppressing immunity, pathogens flourishing, more inflammation...You get the picture.

I've also been concerned about resistant Babs, but now I'm looking closer at this inflammation piece. What if I'm not so much resistant, as I just can't clean up the inflammation from the die-off?

This would also explain the "waking the beast" property of Babs, where you treat and get soooo much worse, then can't ever seem to stop treating.

Instead of constantly adding/switching meds and herbs, I've kind of settled into a protocol and I'm working on my inflammation.

Herbs, sauna, exercise, water, glutathione. Usual stuff, just lots of it.

And it's helping.

So if I was in your position, I would keep treating for sure. Maybe a break from Crypto, or pulse it with lots of clean-up between pulses.

And maybe look up the inflammatory markers that Shoemaker tests. Try betterhealthguy.com or moldwarriors.com

Then get some testing for a baseline.

I cannot tolerate grains, as I seem to make the anti-gliadin antibodies. I am much, much worse after flours or grains. Are you off grains and sugar? That piece is HUGE for me. Paleo is really the only diet that works for me.

And start cleaning up inflamm. Take binders, too!!

You are NEVER out of options. Not possible.

Always take herbs, as they can prevent abx resistance. Also, meds in combo can resolve the resistance to a single med. So don't freak out too much about resistance.

I know this inflammatory piece seems kind of obvious, like of course we're inflamed. But unchecked cytokine cascades are incredibly destructive. They upregulate other bad pathways, suppress good ones, turn on bad genes...Serious bad actors.

Detox, detox, detox. Treat inflamm. Watch you diet. And keep treating infections.

I just took a seminar on neuroendocrine response to exercise. I will start a thread. Can you exercise at all? You may have to. You can start slowly, of course.

Please take a day off Babesia concerns to enjoy your birthday. You can get back at it tomorrow.

Much love,
BoxerMom

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

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lax mom
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Happy Birthday!!!!

Today is a special day! [Smile]

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♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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tick battler
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Lauren - have you tried the Dr. K lyme cocktail? It is very effective against babesia. The artemisinin is liposomal and much more powerful. Also grapefruit juice is used to help avoid resistance. It also works very well for bart. You can make it yourself without going to a practitioner...I can give you the recipe if you would like.

Have you gone to a practitioner who can muscle test you? I would go to a Dr. K practitioner if you can.

tickbattler

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lax mom
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/32747?

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♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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tick battler
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Crypto never helped us for babs but did hit bartonella a bit.

Also - have you tried parasite treatment? That is the missing link for many. Your symptoms are ones I had from parasites. (Babs is a parasite too).

tickbattler

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lyme in Putnam
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Happy birthday. The frustration of this is so bad. I'm sorry. It's hard to hear better days r ahead. Wishing u peace today.

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He took u to it, He'll you through

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CD57
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Boxer has an important point re the inflammation from hell from the herx responses etc.....I think that is my pattern also, just from bartonella which has been my nemesis. I am bad on abx, but much worse off. The treatments keep failing, I believe, because I am so inflamed.

Buhner has a new approach in getting inflammation down and sounds like Dr H has realized that it keeps us all infected. I'm going to start takes massive doses of curcumin per day (like 8 grams) for starters, also ECGC and some other Buhner recommendations. Of course we can't take steroids but sometimes I wonder if a short course of them may not be contraindicated......

anyway. BAck to you....you have many options so keep going.

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BoxerMom
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quote:
Originally posted by CD57:

Of course we can't take steroids but sometimes I wonder if a short course of them may not be contraindicated......

CD, you read my mind. In PANS/PANDAS (another infection/inflammation condition), parents are finding that many of the kids' worst symptoms resolve on steroids.

Many think the steroids are reducing autoimmune responses, but others (myself included) think it's just due to reducing inflammation.

This makes sense to me because it would take time to treat an autoimmune response, but inflammation responds to steroids immediately.

Yes, there is danger to suppressing immunity. But what about the danger of unmitigated inflammation?! And when does permanent damage set in?!!

The B Guidelines are brilliant, but out-of-date for the current presentation of this illness. H and Buhner are current in their observations and treatments.

I'm not convinced the term "steroid disaster" is entirely relevant. It's terrifying, and stops docs and patients from trying something that might help a patient turn the corner.

During the B Guideline years, everyone was searching frantically for the reason why some did not recover. We still are, but we have much more information.

Not telling people to take steroids, but suggesting more research and anecdotal evidence are necessary.

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

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Rivendell
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Happy Birthday Lauren.

For your birthday buy yourself a copy of Buhner's new book "Healing Lyme Disease Co-infections".

Although the book is dealing with Mycoplasma and Bart, the sections on treating inflammation and balancing the immune system are bound to help Babs.

Also, Dr. Horwitz (sp?) new book is supposed to be loaded with ways to get well.

I tried Bab-1 for Babs (not even sure if I have babs), and it stirred up so many symptoms that I'm thinking it is better to let sleeping dogs lie.

I am just concentrating on reducing inflammation and balancing the immune system and making my body healthier so it can deal with infections.

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Herbal Treatments for Lyme and Co-Infections:
http://buhnerhealinglyme.com
http://www.tiredoflyme.com/the-cowden-protocol-for-lyme-disease.html http://www.sinomedresearch.org http://www.lymenet.org/SupportGroups/

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unsure445
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I am so sorry you are dealing wight this. If its any consolation, I feel like today I could write the same post.

Babesia has been a tough one for me too. And yes, its a long, lonely road.

Double sob! I wish I had encouraging words. You are not alone though!

--------------------
unsure445

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CD57
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Boxer has an important point re the inflammation from hell from the herx responses etc.....I think that is my pattern also, just from bartonella which has been my nemesis. I am bad on abx, but much worse off. The treatments keep failing, I believe, because I am so inflamed.

Buhner has a new approach in getting inflammation down and sounds like Dr H has realized that it keeps us all infected. I'm going to start takes massive doses of curcumin per day (like 8 grams) for starters, also ECGC and some other Buhner recommendations. Of course we can't take steroids but sometimes I wonder if a short course of them may not be contraindicated......

anyway. BAck to you....you have many options so keep going.

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lymielauren28
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Thank you all so much for your suggestions, support and birthday wishes. It really means a lot. I hate sounding so dramatic and sad - I'm normally the strong one, the supporter, the cheerleader, glass half full, FUNNY gal [Smile]

Buuuut, this disease gets the best of us down sometimes, as you all know.

BoxerMom, I originally had (and beat) babs microti. When I was reinfected (found fully engorged tick in hair) I managed to contract babs duncani. That was here in Mississippi, so I know for a fact duncani is everywhere ( as if we didn't know that already!).

Got back in with my Lyme doc and we treated very aggressively. I was fine (wonderful) for a year and a half.

THEN in October of 2011 I got a bunch of flea bites from a neighbors cat. Developed acute Bartonella within a week of the bites.

Went back to my Lyme doc AGAIN and we started aggressive Bart treatment. In the middle of Bart herxing, the old babs duncani came roaring back to life.

I've now been juggling both infections for two years. I get one beat down, and the other takes it's place and vice versa.

Tick battler! Yes to the crypto hitting Bart!! I started Sida and Crypto two weeks ago. I felt I was close to remission and wanted to chip away at the last few symptoms, so started them.

Felt GREAT the first few days on them, then started herxing with obvious Bartonella symptoms. Sore feet, irritability, painful calves, etc. It was nothing I couldn't handle, so I continued.

Aaaaaaand then it happened. Babs hit me like a ton of bricks. Started feeling like I had meningitis - stiff painful neck, head pressure in back of head, arms and legs felt weak and heavy, night sweats, chills etc.

I still continued on the crypto, and babs symptoms continued to get worse.

Finally, I was so ill that I couldn't tell which way was up and which way was down, so I stopped everything.

Took nothing, nada for a week straight and still continued to plummet into babs hell.

I finally took some artemisinin this morning and its reduced my symptoms by about 50%.

Here's the other thing: For me, when I treat babs I don't really herx - never have. I just FEEL BETTER. I know that is not most people's experience.

I agree with all of you - inflammation, inflammation, inflammation. I'm terribly inflamed right now. I can feel it.

Oh hey! TickBattler! Would you mind PM'ng me the Dr. K cocktail? Thank you all again so much - you've made my day better by caring.

[ 10-12-2013, 10:15 PM: Message edited by: Robin123 ]

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"The only way out is through"

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lymielauren28
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Also wanted to add that I finally got rid of my babs microti infection with Rife. Got rid of it easy peasy. However, it does not work on babs duncani. Period. Doesn't even put a dent in it. There's something vastly different in the two for the frequencies not to work on both. There has to be.

What about MMS? Anybody had any luck with that?

--------------------
"The only way out is through"

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seibertneurolyme
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I can think of several things not on your list that you may not have tried.

Fortunately for hubby we got rid of his bart before going after babesia aggressively.

Hubby was like you -- he usually herxed for a few days when adding new babs meds, but as a general rule he just felt better on the meds.

He did 11 months of continuous treatment in 2011 despite 5 hospitalizations for fevers over 102 -- 3 of those times he was diagnosed with serratia marcescens but it was never found in his PICC line -- just in his bloodstream.

He also started getting low positive IgG titers (supposedly past infection) to ehrlichia and anaplasma and rocky mountain spotted fever once and even typhus once.

Titers to all those infections had always been negative for the previous 10 years.

He even had a rash with the 4th fever that looked like RMSF to me and his skin peeled off on his fingers and feet. All of this was before the 2 new tickbites.

His LLMD at the time thought that the aggressive babesia treatment brought out all the things that were hiding out in his bloodstream and I agree.

He did try 3 times during that 11 months to pulse babs meds -- he lasted less than 3 days each time. Mild sweats, mild headaches, increased nausea and dry heaves, off balance/ dizziness and even parkinsonian tremors came back.

He did not stop his meds at the end of the 11 months -- but he did get a new Clongen bloodslide which was positive for babesia.

So we got more aggressive. For the next 4 months he continued on the malarone, lariam and doxy and added in oral flagyl, artemisinin and ivermectin (paste from tractor supply).

He also took some ECGC and I think we may have done a little cryptolepis and stephania as well.

Anyway at the end of 4 months on the new combo -- which means after 15 months of continuous treatment -- he stopped all antiparasitics, antimalarials, antibiotics and killing herbs.

He stayed off meds for a couple of months but got the first of 2 new tickbites a few days before resuming meds.

We had already planned to do an antibiotic challenge and he had started on that a couple of days we did the live blood analysis with a phase contrast microscope where they saw ring forms of babesia in 2 views.

While off meds he felt the best he had in 10 years, although very mild sweats and headaches and dizziness/off balance symptoms were starting to come back.

In my opinion he never really cleared the babesia, but I think we could have beat it eventually without the 2 new tickbites.

I think Steve may have beaten babesia duncani with the 15 months of treatment as those titers went negative,

and the only thing that showed up after his death was 3 different unnamed uncategorized species of babesia like blood borne protozoa.

He died 6 months after resuming meds from ARDS (lung failure) and a splenic infarction (bloodclot in the spleen).

I have recently been in communication with the Virginia Dept of Health and will be contacting the CDC shortly to see if they can further investigate what the protozoa were that Steve was still infected with.

Here are a couple of links to info I posted after attending the Buhner conference over the summer.

Babesia Notes -- Buhner Conference 6/15/13

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/124796

Herxing and Biofilms -- Buhner Conference 6/15/13

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/124815

If you are not taking it then I would suggest adding lumbrokinase and maybe wobenzyme as well to your supplements. Hubby took both and thought they were essential.

If you have not done it then my suggestion would be quinine and IV clindamycin to start. Then switch to something else. But I would keep taking some of the buhner herbs while on prescription meds.

Hubby also thought the ivermectin was probably one of the best things he ever took.

I would just add in one new thing at a time. But try to have at least 3 killing herbs or antimalarials or antiparasitics on board at one time. I think by using combos you are less likely to develop resistance.

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

Good luck and don't give up.

Bea Seibert

[ 10-12-2013, 10:17 PM: Message edited by: Robin123 ]

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tick battler
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Lauren,
I will send you a pm with the cocktail ingredients. We got rid of duncani with it. We also add Agrisept-L, which is what our other practitioner uses to kill babs.

It also works against several babs strains, including duncani. With the two of those, you should be in good shape.

I am not surprised that your babs symptoms increased once you knocked down the bart a bit...

as I'm sure you know, that's how this all works - like the "whack a mole" game...you knock one down and there is more room for another to grow...so you need to hit all of the infections at once.

I loved hearing that you got rid of microti with rife! One other thought there to add to your ****nal...did you ever contact Char Boehm to see if she calculated frequencies for duncani? If not, that would be another thought.

My family is on the MMS baby bottle and parasite protocols right now. I recently tested MMS with my EDS practitioner and saw that one of the few things it did not get rid of was babesia!

I don't know if the dose I was testing was not high enough, but that dose did show it would clear lyme and bartonella and many types of worms.

So, since 3 of us have gotten new babs infections from mosquito bites this fall, we are taking the lyme cocktail along with Agrisept and MMS. That would probably be a great combo but you would need to start very slowly.

Finally, as Bea mentioned, her husband thought that Ivermectin was one of the best therapies for him....just a reminder to not forget to focus on parasites (worms!).

My theory is that they may be a big reason why some of us get so sick with lyme/coinfections...our immune systems are already weakened by the parasites.

The MMS would cover most of the worms, but does not normally hit heartworm (filaria) or tapeworm.

Hope this helps!
Megan

[ 10-12-2013, 10:19 PM: Message edited by: Robin123 ]

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Robin123
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Everyone, try to keep your posts broken up in a couple lines so everyone who wants to here can read.

Happy birthday to you, LymieLauren - I hope you could find something to enjoy today, including all the support here -

Just wanted to add that my favorite anti-inflams are curcumin powder, mangosteen juice, noni juice, grapeseed extract capsules. Others like bromelain and boswellia.

A scoop of Takesumi activated charcoal with fatty meals 2x/day recommended for detoxing.

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seibertneurolyme
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tick battler -- Not going to argue but feel I should point out that babesia infections have only ever been proven to be transmitted by ticks. Bartonella definitely can be transmitted by numerous biting insects. But of course according to the IDSA bartonella cannot be transmitted by ticks so maybe babesia can be transmitted by other insects such as mosquitoes and no one has ever tested to see if that is the case.

I feel the reason ivermectin helped hubby is because babesia is a blood borne parasite. I do not think hubby had intestinal parasites but there is no way to know for sure. But for him he did not herx with G.I. symptoms when he took the ivermectin and he increased his dose very quickly on that med. The ivermectin caused some mild neurological symptoms for an hour or so when he took his nightly dose but that was pretty much it.

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Sammi
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Lauren, first of all Happy Birthday!

Everyone has given great advice. Have you ever had your immune function tested? If not, you may want to have the testing done to see if it could be part of why you are not getting better.

We all understand how horrific bad days can be. And many, many bad days in a row are unbearable. But you must hold on! No matter how bad it gets, it always lets up.

Hang in there okay?

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tick battler
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Bea - yes, if you go by mainstream testing, they don't think that lyme or babesia can be transmitted by anything but ticks.

I don't rely on mainstream testing for my info about babesia being transmitted by biting insects. I rely on Klinghart's findings which point to transmission by mosquitoes, and also observations of babs symptoms arising in my family and babysitter after bites (which then respond to babesia treatment), and finally my practitioner has said many times that babesia is more commonly carried by mosquitoes than any of the other coinfections. We do see this when we are tested...often she will only find babesia and not the other infections. And she is able to test the mosquitoes themselves for the frequencies of the pathogens, which also has shown them to carry babesia, among other things.

Mainstream is very much behind on so many things. They only just finally recognized babesia as a reportable disesase when we knew it was around for many years. And like you point out, they fail to recognize that bartonella can be transmitted by ticks!

There is no reason in my mind to suggest that babesia would be the only infection not carried by mosquitoes when lyme, bartonella, malaria, microscopic worms, west nile, and many other things are carried by them.

But you are right...there is no mainstream testing that I have found to prove this (yet).

With regard to worm infections, just because there are no gastro symptoms does not mean they are not there. I have been treating helminth infections in my family and most of the symptoms from them are neuro. My internal vibrating, insomnia and rapid heart rate are disappearing as we eliminate the worms. Most of my herxing is in my lungs and nervous system.

tickbattler

Posts: 1763 | From Malvern, PA | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
RC1
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Have you had the HLA DR test to see if you are susceptible to mold? If you are and if your house tests poorly, that could explain why you immune system is suppressed and also would explain your very intense symptoms.

If a person has these genes, they get activated by a really bad infection like Lyme. What you could tolerate before you can no longer.

Mold was and still is a huge part of my illness. I'm still treating. When I go into a place that is moldy (50% of the buildings in the US have unacceptable amounts of mold for people like me) I get a pretty immediate inflammation response.

Sometimes they can be quite intense. 25% of us have these genes. You have been treating for so long, you really must question if something is being overlooked.

Posts: 845 | From Northeast | Registered: May 2011  |  IP: Logged | Report this post to a Moderator
Catgirl
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quote:
Originally posted by lymielauren28:
...Babs hit me like a ton of bricks. Started feeling like I had meningitis - stiff painful neck, head pressure in back of head, arms and legs felt weak and heavy, night sweats, chills etc.

This is protomyxzoa on me. People with proto can easily backslide because they are missing this bug. The symptoms are babs like, and bart like.

Proto responds to anti parasitic meds. Ivermectin, alinia, and albenza, and a few other meds. It's obviously parasite related (proto). You have to focus on proto though, or only some of the stuff you are taking will get through to kill your infections. The strong bugs survive, and come back.

I agree with Tick Battler, hitting parasites is necessary. They are a stealth companion to lyme, and are easily missed. We all have them, it's just lyme patients seem to have more of them. Check out THE PARASITE WARRIOR'S THREAD. It's full of great info. Do whatever works for you: MMS, parasite herbs, meds, salt/c.

Also, there are several threads on protomyxzoa (FL1953). The easiest way to hit this bug is to change your diet.

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

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
nefferdun
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I am going to run my broken record again.

Protomyxzoa Rheumatica.

It mimics babesia symptoms, all of which you are describing. I thought I was relapsing with babesia and nothing was working. I was so depressed. Then I tested positive for PR.

I would say give the low fat vegan diet a try and ivermectin but I think it is wiser to just fork out the money to get tested first, because the diet is very restrictive.

Anyone out there who has been treating babesia or bartonella for over two years should get the PCR test for PR. One month of mepron or malarone is 4 times the money so you really have nothing to lose. If you don't have it, great.

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

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
nefferdun
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PS, Happy 34th Birthday!!! I made it to 66 and plan to make it to 99, so I am sure you will get way past 35. It really does sound like Protomyzoa Rheumatica.

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

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
lymielauren28
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Thank you all again so much for all of your kind words and support and suggestions. Yesterday was the lowest I've been in a long, long time. You all helped to pull me through.

Last night I took Ivermectin for the first time. My doctor prescribed me 48 mg - I took 24 mg last night and 24 mg this morning, both on an empty stomach. Within a couple of hours of my first dose my neck pain vanished. It was like magic!! The head pressure has lifted as well.

I had a deep burning in my legs for days before this. After the ivermectin the burning turned into this weird pain - it felt like I had little pac-men running around in my thigh muscles and my legs twitched uncontrollably. Today i just feel exhausted, like I've been in a war. I don't know if this will be a cure-all, but for now its helping. Perhaps it IS protomyxzoa. Maybe it's a little of both.

I'm going to continue on the ivermectin, but at a lower dose and I'm also going to order some liposomal artemisinin. My diet is somewhat low fat as it is, but I plan on cutting it down even lower just in case. Where do I get the test for PR?

Also, to RC1: my husband and I just built a brand new home, so for now at least, mold isn't an issue.

Bea, I'm going to ask my LLMD about IV clindamycin and quinine as a next step.

Thank you all again. Your support has been invaluable.

--------------------
"The only way out is through"

Posts: 1434 | From mississippi | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
   

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