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Posted 9/7/2018 9:54 AM (GMT 0)
Hi all,

I'm in the UK, and the partner of somebody currently treating what we believe to be Babesiosis (weak positive on an Armin Elispot test (and negatives for Bart and Borrelia) and low CD57 levels). She's also been tested positive for high Ochratoxin A and some bacteria, namely, candida, strep and C diff. She's been suffering for around 8 years with symptoms and only recently have we got some sort of diagnosis. She's 26.

I've decided to post on here because I'm just feeling quite wary and nervous about what she's been advised to treat it with. I'm all for natural first, but when it's something as serious as Lyme/co-infections, I just want to be sure we're doing the right thing.

For the Babesiosis, we are taking solely Byron White's A-BAB. Alongside this, she's also taking
- IMN-V-III for potential viral infections
- AlphaGuard
- Multi Messenger
- MicroMax by The Really Healthy Company for gut health
- Saccharomyces Boulardii for C diff
- Oil of oregano
- NeuroMag for brain function
- Ultra Binder for the OTA

She's being quite strict with her diet. She's intolerant to gluten, dairy and soy anyway; but is mostly avoiding sugar (no refined sugar, but eating fruit and occasional raw honey), avoiding nightshades, refined carbs and alcohol, but also things like dried fruit, coffee and chocolate because of the OTA. She's meanwhile detoxing heavily to keep things moving and herxes as painless as possible; via milk thistle, chlorella, the abovementioned Ultra Binder, lots of water, ACV & lemon juice, rebounding, epsom baths, body brushing, and we're actually trying a infrared sauna for the first time this weekend.

I would be very interested to know your thoughts. I just feel like we should be being prescribed anti-biotics - I'm feeling quite nervous that we haven't. I don't know how severe the above illnesses are for my wife. She's about 2 weeks into treatment at the moment and herxing quite badly (headaches, muscle ache, fatigue and nausea).

Thanks all,

C

Post Edited (ceebs13) : 9/7/2018 7:16:49 AM (GMT-6)

Posted 9/7/2018 10:47 AM (GMT 0)
Hi and welcome to our forum ceebs13,

Sorry that your wife has Babesia and other symptoms, but its good you have found us.

Elisa test for Lyme is highly unreliable. The western blot is better and shows different bands for Lyme.

Others with more experience on testing hopefully will be along later to comment more on that.


For Babesia many use Malaron or Mepron and additional herbals.


Yes, many have use Byron A-Bab also.

Stephen Buhner has a co infection book on Babesia and recommends another babesia herbal protocol also that you may want to read about.

Babesia needs to be treated for many at least 4 to 5 months and possibly more.

There is also an active facebook page for Babesia called "Babesia Buddies"



For herxing be sure to have her use a few detoxing methods.

A few are: warm Epsom salt baths
Drink water with lemon juice daily
Dry brushing
Milk thistle


You can go to : /www.tiredoflyme.com/detox-methods.html

for more detoxing methods and information.


We do encourage all new members to read our "New to Lyme" start here thread at the top of the page.

It has useful information on testing, symptoms and more.

Take care and I wish your family the best.
Posted 9/7/2018 10:55 AM (GMT 0)

goshawk said...
Hi and welcome to our forum ceebs13,

Sorry that your wife has Babesia and other symptoms, but its good you have found us.

Elisa test for Lyme is highly unreliable. The western blot is better and shows different bands for Lyme.

Others with more experience on testing hopefully will be along later to comment more on that.


For Babesia many use Malaron or Mepron and additional herbals.


Yes, many have use Byron A-Bab also.

Stephen Buhner has a co infection book on Babesia and recommends another babesia herbal protocol also that you may want to read about.

Babesia needs to be treated for many at least 4 to 5 months and possibly more.

There is also an active facebook page for Babesia called "Babesia Buddies"



For herxing be sure to have her use a few detoxing methods.

A few are: warm Epsom salt baths
Drink water with lemon juice daily
Dry brushing
Milk thistle


You can go to : /www.tiredoflyme.com/detox-methods.html

for more detoxing methods and information.


We do encourage all new members to read our "New to Lyme" start here thread at the top of the page.

It has useful information on testing, symptoms and more.

Take care and I wish your family the best.

Many thanks for your reply - much appreciated.

I've just corrected my OP. It wasn't the Elisa test but in fact an Elispot with Armin Labs, that checks CD57 levels etc alongside strains of lyme. Worth noting that her CD57 levels were low at 28

Thanks

C
Posted 9/7/2018 3:13 PM (GMT 0)
Hi Ceebs,

I'm curious. Could you list some of her symptoms? I tested positive for Bab and also had very very low cd57. I think mine were 23.
Posted 9/7/2018 4:18 PM (GMT 0)
Hi. I would not be overly concerned about not using antibiotics from the start. Her body may not be able to tolerate it anyway, as she's already been sick 8 years and is mold toxic, too. She's herxing on the herbs. That means it's working. Rebounding, sauna, and binders should all help with the toxin removal, but it will still take time (months at least).

Byron White formulas are very strong from what I've heard. I've been too afraid to take them for that reason. I am doing Buhner's protocols for bartonella, Lyme, and babesia. I also have mold illness (CIRS).

I've never heard of the names of some of her supplements, as they probably are not from the US, but what you listed sounds like a solid protocol for all of it.

I would give the treatments time. There's no need to rush to antibiotics in my opinion. That's always an option, though.
Posted 9/7/2018 4:41 PM (GMT 0)

ceebs13 said...
Hi all,

I'm in the UK, and the partner of somebody currently treating what we believe to be Babesiosis (weak positive on an Armin Elispot test (and negatives for Bart and Borrelia) and low CD57 levels). She's also been tested positive for high Ochratoxin A and some bacteria, namely, candida, strep and C diff. She's been suffering for around 8 years with symptoms and only recently have we got some sort of diagnosis. She's 26.

I've decided to post on here because I'm just feeling quite wary and nervous about what she's been advised to treat it with. I'm all for natural first, but when it's something as serious as Lyme/co-infections, I just want to be sure we're doing the right thing.

For the Babesiosis, we are taking solely Byron White's A-BAB. Alongside this, she's also taking
- IMN-V-III for potential viral infections
- AlphaGuard
- Multi Messenger
- MicroMax by The Really Healthy Company for gut health
- Saccharomyces Boulardii for C diff
- Oil of oregano
- NeuroMag for brain function
- Ultra Binder for the OTA

She's being quite strict with her diet. She's intolerant to gluten, dairy and soy anyway; but is mostly avoiding sugar (no refined sugar, but eating fruit and occasional raw honey), avoiding nightshades, refined carbs and alcohol, but also things like dried fruit, coffee and chocolate because of the OTA. She's meanwhile detoxing heavily to keep things moving and herxes as painless as possible; via milk thistle, chlorella, the abovementioned Ultra Binder, lots of water, ACV & lemon juice, rebounding, epsom baths, body brushing, and we're actually trying a infrared sauna for the first time this weekend.

I would be very interested to know your thoughts. I just feel like we should be being prescribed anti-biotics - I'm feeling quite nervous that we haven't. I don't know how severe the above illnesses are for my wife. She's about 2 weeks into treatment at the moment and herxing quite badly (headaches, muscle ache, fatigue and nausea).

Thanks all,

C

The Elispot test is a good test...but there can still be some false negatives.

re: pharmaceutical route. Your wife can always switch to the babesia pharma (Mepron/malarone) down the road...after she's given the herbals a chance.
What are her thoughts - does she want to treat herbally?

Also - lyme herbs could be added in - maybe after she's been on the babesia herbs for awhile....and is not herxing so badly.

Sounds like she has a good detox protocol.

Is she taking probiotics? I may have missed it in your post. (something in addition to the SB is warranted)
Posted 9/8/2018 9:54 PM (GMT 0)
Hi all,

Many thanks for your replies. I'm sure you can all appreciate how lonely and unsupported one can feel when trying to address Lyme. In the UK, it's generally just not even tested for because there's a misconception with British medical professionals that Lyme is exclusive to America and parts of Europe. So, I appreciate hearing from you guys.

Garion: sorry to hear you're suffering with Babesiosis too. Her most common symptom is daily headaches, seeming to stem from a constantly swollen lymph node on the back of her neck. She often says she feels like she can't get enough oxygen to her brain, and that her head feels separate from her body. We went to see Hereditary a few months back so I don't like her describing those symptoms in that way too much tongue Other common symptoms of hers are muscle aches, fatigue, knots in her back and anxiety. Are you experiencing similar things?

WalkingbyFaith: thanks for your reassuring words. Re A-BAB, she wasn't experiencing major herxing to begin with on low dosages. Within 2 weeks, she's gone from 1 drop twice a day to 10 drops twice a day, and now her herxing is pretty consistent. I think it ultimately again comes down to different people responding to different meds.

Girlie: we have taken the negatives on Bart and Borrelia with a pinch of salt. Fortunately, the ABAB is meant to somewhat address the two alongside the Babesia, albeit not as effectively as other recommended meds and herbs. We have always tried to treat anything wrong with either of us over the years naturally, and it has served us well, so we are initially keen to keep on this path; but this is obviously more serious. I think she may stick on this protocol until her first re-test. Also, re probiotics, the MicroMax I mention is a solution designed to balance gut flora - but now you mention it, it might be worth exploring if certain strains aren't being covered. Do you have any recommendations?

Worth noting that I'm aware it's a little odd that I'm speaking on behalf of my wife rather than her writing on here herself. I think she's ultimately feeling quite overwhelmed by it all, and as I spend a lot of time researching bits, it made sense to smile thanks again all for your help

C
Posted 9/8/2018 11:43 PM (GMT 0)
I'm not familiar with the MicroMax....but something that can be added is Kefir. It's usually in the yogurt section of grocery stores/markets. Well, it is here in Canada.

It's not odd that you are posting on her behalf. It's wonderful that she has a supportive partner...this disease wears us down...and having you to help her is HUGE.

Just prepare yourself for a long haul...and if her journey isn't long...then all the better.
It often takes many months to years to effectively treat and have it go into remission.

Hang in there...and thank you for being an active participant in your wife's healing.
Posted 9/9/2018 1:54 AM (GMT 0)
In case you don't already know, swollen lymph nodes is a classic sign of bartonella.
Posted 9/10/2018 8:41 AM (GMT 0)
Girlie: thanks. Kefir has actually blown up this summer in the UK and is available in supermarkets. Unfortunately, the wife's intolerant to dairy so is unable to consume. There is a coconut kefir available but is quite expensive. She does however have sauerkraut and kombucha every week, and also a tbsp of ACV in the mornings as well as in some meals.
Thanks for your kind words, too. I get what a slog it must be for sufferers of the disease, so I really do just try and lessen the load for her. What is your current state? Is your treatment ongoing currently?

WalkingbyFaith: thanks. It seems there are a lot of crossovers between Lyme and the co-infections. I think to be fair swollen lymphs are a pretty standard indicator that there is some sort of infection or inflammation in the body, but it does mainly seem to be that one at the top of the neck. That said I'm not going to be surprised if she does suddenly get a Bartonella or Borrelia positive on the next re-test.
Posted 9/13/2018 8:44 AM (GMT 0)
Hey,

Just returning to my first thread, as I've already learnt a lot on these forums in just a week, and it's really shifted my understanding of my wife's illness. I'm finding it super, super useful on here, so thanks everyone for your input, not just in response to my questions.

I came on here believing my wife has Babesiosis. However, I've pretty swiftly moved towards the belief that she probably has Lyme disease, despite only babesia showing up on the Elispot. So my question is: is the below protocol sufficient to address Lyme and its co-infections? The practitioner we dealt with honestly did not convey a great deal of concern with my wife's test results and symptoms. She's seen babesia come up on a test and seems to have just taken it as gospel that that is all that's wrong with her in the Lyme department. We weren't really given much guidance or indication of how much of a slog tackling these diseases is. I'd go as far to say that she was rather blasé, indirectly suggesting that Babesiosis is relatively straightforward to remedy.

I know A-BAB has qualities that will somewhat address Bartonella and Borrelia, but is it enough? Should we be looking to introduce further herbs to tackle the likelihood of other infections?

Post Edited (ceebs13) : 9/13/2018 2:48:11 AM (GMT-6)

Posted 9/13/2018 4:47 PM (GMT 0)

ceebs13 said...
Hey,

Just returning to my first thread, as I've already learnt a lot on these forums in just a week, and it's really shifted my understanding of my wife's illness. I'm finding it super, super useful on here, so thanks everyone for your input, not just in response to my questions.

I came on here believing my wife has Babesiosis. However, I've pretty swiftly moved towards the belief that she probably has Lyme disease, despite only babesia showing up on the Elispot. So my question is: is the below protocol sufficient to address Lyme and its co-infections? The practitioner we dealt with honestly did not convey a great deal of concern with my wife's test results and symptoms. She's seen babesia come up on a test and seems to have just taken it as gospel that that is all that's wrong with her in the Lyme department. We weren't really given much guidance or indication of how much of a slog tackling these diseases is. I'd go as far to say that she was rather blasé, indirectly suggesting that Babesiosis is relatively straightforward to remedy.

I know A-BAB has qualities that will somewhat address Bartonella and Borrelia, but is it enough? Should we be looking to introduce further herbs to tackle the likelihood of other infections?

I would add something in that targets lyme. But, maybe give the Babesia treatment (A-BAB) a go for awhile first....before adding in the lyme-specific treatment.

...and yes definitely look into other infections - specifically bartonella....

Have you looked into Stephen Buhner's herbal protocols? After she's been on the A-BAB for awhile...you could perhaps add in Japanese Knotweed. It's in both the lyme and bartonella protocol.
Posted 9/13/2018 5:36 PM (GMT 0)
Babesia

Is one of the many infections that come with ticks, It’s a protozoan parasite. 300 can fit on one red blood cell and is similar to malaria in some ways.

I have long since suspected I have it because of my neurological symptoms and head pressure.

I just started an modified klinghardt protocol using 14 days invermectin, pyrantel, 14 days abendazole and I’m trying to source 14 days alinia for one of the last constituents.

These are commonly used human/horse meds for deworming and antiparasites. The protazoa babesia is a parasite that has a considerably long life cycle

I’m 3 days in and feeling much better!
Posted 9/13/2018 10:19 PM (GMT 0)
Thanks both. We're solely sticking to herbs for now, so will keep note of Japanese Knotweed for future - I agree that it's best for now to stick solely with A-BAB. Thinking of adding in allicin and/or Stevia to tackle biofilm though
Posted 9/16/2018 1:29 PM (GMT 0)
Hi Ceebs13,

Looking at your protocol I am sure we are being treated at the same naturopathic clinic, that is, your wife and I.

I was diagnosed with lyme so am taking A-L Complex by Byron White, and it has helped me a great deal. My decline was so dramatic and sudden, that tincture really made a huge difference for me. Of course, antibiotics weren't an option, because I tested negative (well, borderline to be more specific) when tested by NHS. I was also very panicky about not being on antibiotics, but wasn't aware of any medical doctors treating lyme in the UK. With time, as I got better, I stopped thinking about antibiotics.

I also tested weak positive for borrelia, but the problem is, with lyme, it's not necessarily the number of spirochetes that affects how severe your symptoms are, but rather your individual immune response. Everything is complicated with lyme.
I have only added in A-BAB recently, worked up to 5 drops, but then had to slow down as I am not feeling well (I am never sure if something is a herx or not).

With severe herx, perhaps try Burbur (by Nutramedix). And I would pehaps reduce the dose of A-Bab and really go slowly.
I read that body has sufficient glutathione at the start, but then it gets depleted.

People on this forum really know a lot, and are really supportive. And then, you seem like soemone who is going to explore a lot on your own. Perhaps get a book on lyme. In a few months time you'll be an expert (=you'll know just how much you don't know) ;)
Posted 9/16/2018 5:55 PM (GMT 0)

Zimica said...
Hi Ceebs13,

Looking at your protocol I am sure we are being treated at the same naturopathic clinic, that is, your wife and I.

I was diagnosed with lyme so am taking A-L Complex by Byron White, and it has helped me a great deal. My decline was so dramatic and sudden, that tincture really made a huge difference for me. Of course, antibiotics weren't an option, because I tested negative (well, borderline to be more specific) when tested by NHS. I was also very panicky about not being on antibiotics, but wasn't aware of any medical doctors treating lyme in the UK. With time, as I got better, I stopped thinking about antibiotics.

I also tested weak positive for borrelia, but the problem is, with lyme, it's not necessarily the number of spirochetes that affects how severe your symptoms are, but rather your individual immune response. Everything is complicated with lyme.
I have only added in A-BAB recently, worked up to 5 drops, but then had to slow down as I am not feeling well (I am never sure if something is a herx or not).

With severe herx, perhaps try Burbur (by Nutramedix). And I would pehaps reduce the dose of A-Bab and really go slowly.
I read that body has sufficient glutathione at the start, but then it gets depleted.

People on this forum really know a lot, and are really supportive. And then, you seem like soemone who is going to explore a lot on your own. Perhaps get a book on lyme. In a few months time you'll be an expert (=you'll know just how much you don't know) ;)

Hey Zimica,

Thanks for your message. Interesting! It's slim pickings for support in the UK, so it wouldn't be surprising if it was the same clinic.

Good to hear you've seen progress with the Byron White herbs, particularly the Lyme one. If and when my wife gets to the bottom of the Babesiosis, it would be good to stick to Byron White's solutions to tackle the next steps. Like I mention above, we had negatives for Borrelia and Bart, but you put it best: 'Everything is complicated with lyme'.

Thanks for the Burbur recommendation. I was looking at the stuff just yesterday, but hadn't read of anyone who had had experience with it. Is it one of your better tried and tested detox methods?

Any recommendations on the books? I have been reading up on a lot of info, but it's dispersed across various places. Would be great to have one or two go-to sources
Posted 9/16/2018 7:59 PM (GMT 0)
I haven’t read all posts in the thread - saw you’re asking about books to read.

A couple books popular with forum members

Buhner (he has several)

Dr Richard Horowitz - has two on lyme that I know of.
Posted 9/16/2018 8:08 PM (GMT 0)
Thanks a lot, Girlie smile
Posted 9/16/2018 8:45 PM (GMT 0)
I have burbur at hand for when I am really unwell, and it helps. I don't use it every day.
For regular detox I use chlorella (both capsules and powder), zeolite powder, sauna, epsom salt baths (this one is also great), clay masks (great for headaches, especially herx headaches), lemon or ACV water, of course lots of veggies...

I was also advised to buy Ultra Binder, but since I have so many things stocked up and am tired of all the expensive supplements, I just skipped for now.

Girlie already mentioned, there's Buhner's book Healing Lyme, he goes into great detail, if you are interested into dynamics of the disease (some parts are really not an easy read, but then you get to learn so much), and it's packed with information. Buhner is also very witty. There is a book on babesiosis as well. I also find it very comforting just to listen to him on youtube, he has a unique perspective on things. Buhner is a great philosopher.

Also what you could do is watch dr Dietrich Klinghardt's videos on youtube - every time I watch I find out something new. Such wealth of knowledge. For example - I just discovered that you can make at home liposomal vitamin C! It's more potent than IV vitamin C, and much cheaper. I bought this summer a pack of liposomal vitamin C, it's crazy expensive. (Btw, does anyone know anything about this?)

I saw you were mentioning FIR sauna, I was wondering if you have your own what brand is it. I am having difficulty finding what brand is reliable on the uk market. At the clinic, they advise to buy a mat, but I was wondering if there are any saunas that are as good.

Post Edited (Zimica) : 9/16/2018 3:08:53 PM (GMT-6)

Posted 9/17/2018 8:19 AM (GMT 0)
The Ultra Binder is great as it contains charcoal and bentonite; but you're right, it is very expensive. However, as my wife is treating a mycotoxin too (OTA), it's a two birds one stone supplement so was a no brainer. Still, £60+ for 30 servings...

Thanks for your notes on books, videos etc. I've been meaning to check out some of Klinghardt's talks online. I've only briefly read about liposomal vit C - what does it do? Or is it just a more bioavailable form of vit C. Same goes for the liposomal glutathione.

Re sauna, I can't help you there unfortunately. We go to a Pilates studio about 10 mins away as the trainer has one. Where are you based in UK out of interest?
Posted 9/17/2018 1:16 PM (GMT 0)
I am in West London. I am going to a regular sauna at the local sports center.

Yes it is much more bioavailable and it doesn't upset the stomach. This summer I asked at the clinic what form of vitamin C is the best, since it is so important for so many things (collagen synthesis being one of them that I in particular am having trouble with) and I was advised to get Altrient's Liposomal vit C - 30 sachets £40. That's why I am so excited about making it at home, and that Klinghardt and Mercola recommended it, it's not like someone talked about it in some obscure youtube video.
Posted 9/17/2018 1:37 PM (GMT 0)
I had spotted a spa that has an IR sauna in West London that I was going to take the wife to before we realised there was one locally (we're in Cambridgeshire). It's in Chelsea, not sure how far you are from there, called KXU.

Really interesting. I'll look up the video and will give it a go. Re collagen, the wife used to regularly take Great Lakes Gelatin (back when it was purely 'fibromyalgia') and saw real results from it. I've just bought another load of it to try and get it back into her diet/regime more regularly, as she has really trouble with her muscles and fascia in her upper body.
Posted 9/17/2018 3:00 PM (GMT 0)
Thanks for the info Ceebs13!

I am taking Great Lakes Gelatin as well, but have just ordered a different one, just to give it a try - NutriZing Collagen Pure Peptide (noone recommended it, I just wanted to try a different brand, because of my ongoing cracking joints). It seems people on the forum also like Collagen Peptides by Protein Essentials, but it looks like it's not available in the UK.

Here's a good thread on collagen
https://www.healingwell.com/community/default.aspx?f=30&m=3934933
Posted 9/17/2018 3:02 PM (GMT 0)
Great stuff, thanks. Didn't know about vit C's role in collagen production, so good to know!
Posted 9/18/2018 1:46 AM (GMT 0)
when I treated it successfully two years ago ( tho it seems to be back now sad ) I used:
lymogen, and neuro anti-tox form Jernigan natraceuticals,
curcumin, nac, iron,

right now this time I am taking:
black seed oil
lymogen, borellogen, neuro antitox
curcumin
candibactin ar ( oils of oregano thyme sage and lemon balm)
and buhner babesia formula with crymptolepsis, bidens and sida acuta

my only symptoms are tightness in breathing and fatigue, and not improvement yet. I have been on the Jernigan stuff a few weeks, the candibactin a few weeks and the others just a few days.
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