How to know if it's herxing or intolerance of zithro / Rifampin co

[Vbakersimon]

Hi everyone,

 

I'm new to the group and trying to help my 6 year old ASD son who has been struggling on and off with OCD behaviors for 4+ years now. We did 13 rounds of IVIG when he was 2 years old, which helped dramatically after his 1st round, and then diminished after a few days (note: he had very low igG levels, that's why we had to do it for so long). He was diagnosed with Lyme and Ehrlichia at 2 1/2 years old, and has been on various courses of abx since.

 

We finally seem to have had a our first significant Lyme breakthrough since starting Rifampin in June, but since we added Azithromycin Oct 1 (after using another antibiotic with Rifampin prior to that), he's been either herxing really hard or having a hard time tolerating the change (what I mean is that his OCD is "off the charts" bad, he's very emotional, etc.). Yet, there's also been some GOOD things happening like improved speech throughout this month since starting zithro.

 

My question: can a herx last for 5 weeks? Or, is Zithro just too much for this little body to handle? Any experiences you can share with me would be so very helpful and appreciated!

 

Many thanks!

Vanessa (Gavin's mom)

[rowingmom]

Are you still using rifampin as well, or just azithromycin alone? Was he able to handle the rifampin along with the other abx started in June? Did he herx with that combination?

 

DD's first herx was a doozie, but didn't last more than about 2 weeks. And that was only with biaxin. The successive ones where shorter (3-4 days) on combinations which included biaxin/rifampin, biaxin/rifampin/plaquinel, biaxin/rifampin/plaquinel/pulsed tindamax, azithromycin/minocycline/malarone, azithromycin/minocycline/malarone/plaquinel/pulsed tindamax. Only when we added tindamax to the combinations did DD have trouble detoxing. For that reason we were forced to pulse. DD does have a MTHFR deletion that we supplement for with methylated B vitamins.

 

If what you are seeing is a herx, perhaps azithromycin is too much (like tindamax was for us) and needs to be decreased to allow his body to detox. Do you use any detoxing protocols (lemon juice, magnesium, epsom salt baths, psyllium husk to keep toxins moving out)? Have you tested for methylation defects?

 

Good to hear that you are seeing speech results, but this may be in part due to the anti-inflammatory effects of the antibiotic as well.

 

http://blogs.nejm.org/now/index.php/azithromycin-for-prevention-of-copd-exacerbations/2011/08/24/

 

"Why azithromycin? The macrolide antibiotic has anti-inflammatory and immune-modulatory benefits (which is why it is given to patients with cystic fibrosis and bronchiectasis) on top of its antibiotic action. However, studies have been split on the question of whether long-term antibiotics benefit patients with COPD".

 

Does your son respond to anti-inflammatories?

[Hopeny]

We had a longer but manageable herx with rifampin/zith. We definitely saw it for weeks. Burbur from nutramedix was very helpful in managing the rage herxes, have you tried it? We treated for six months before going to rifampin.

[LNN]

We had a 5 week herx on tindamax that got progressively worse until we stopped (pulsing on weekends). That was at the height of DSs lyme treatment. We tried it again 1.5 yrs later towrd the end of treatment and he still had a severe upswing. Yet he had very few symptoms by that time. So it seems that for whatever reason, his body can't tolerate tindamax and the response may not be a herx so much as an adverse reaction to the med itself.

 

IMO, 5 weeks is long enough. Sometimes the inflammation and emotional damage is worse than any benefit the abx might be giving. You might want to talk to your doctor about a different combo. Some bodies seem to have certain meds or supplements that just aren't a good match.

[sf_mom]

Our twins have been treated for Lyme induced autism since they were 3 1/2 years old by an LLMD. One was high function with many sensory issues, OCD and rage behavior. One had language regression at 2. They are now 6 1/2 years old and meeting all their developemental milestones and are in 1st grade.

 

The longest herx we experienced was 5 months. The first two weeks were very intense with daily rages, after that point we noticed slight improvement and rages eventually decreased to once a week. However, it did take the full five months to fully resolve the weekly rages. We worked very closely with our LLMD during this period and at one point they even asked if we wanted to slow down or change antibiotics but we choose to continue with current antibiotic combination. We eventually got the break we needed in symptoms and have not experienced those type of rages for some time.

 

Our twins also have low IgGs as well as low IgAs. Throughout this process, I learned if your child is deficient in amino acids they will have a difficult time making IgGs. Also if your child has low absorption, you may have problems with oral supplementation of these vitamins/minerals. We discovered all our kids have low absorption from their comprehensive stool analysis. We are using SpectraCell test to determine deficiencies of vitamins, minerals and amnio acids (SpectraCell is micronutrient test that measures how these micronutrients are actually functioning with the white blood cells). We are now boosting our older DS immune systems with IV vitamins and minerals to help fight Lyme et al and plan do it with our twins as well. The IV nutrients have definitely helped with our older son's remaining symptoms. Since you are dealing with similar issues it might be something to consider with your Dr. as you treat Lyme et al to help him detox and methylate properly.

Edited November 8, 2013 by SF Mom

[Vbakersimon]

First, a huge thanks to all of you who have provided your insight and experience on this! Yes, we are following a detox protocol of the following:

 

Burbur, Dandelion Root, and Milk Thistle (30 drops of each, twice daily)

100m units Klaire Labs probiotic

Paleo Reds (antioxidant powder)

Vitamins A, B, C, D

 

He does have the c6778ct mutation which impairs methylation, so I'm calling his DAN doctor and going to ask about getting him back on the B12 injections (I had to stop a couple of years back as he refused to let me do them after a couple of years, but I have to try again). I used to bring him in for weekly IV nutrients when he was a toddler, but I don't know if we can financially afford to do this at this point as I'm no longer working and we have 2 kids with ASD and Lyme that we're treating.

 

What are your thoughts on incorporating activated charcoal into this regimen? I know that Nutramedix says it's contraindicated when using their products, but what if it's done several hours away from the flash boiled 'detox cocktail' I give to him? Any thoughts?

 

I've also been considering the pulsing or asking his LLMD to switch out the Zithro to a different abx to accompany the Rifampin, so I'm reassured to hear that others have done this with good results.

[Hopeny]

Sorry off topic but do you boil the drops to get the alcohol out? Can you give more detail on that?

[rowingmom]

The anti-inflammatory japanese knotweed helped us so much with herx-induced inflammation. If you are dealing with lyme and co, and not averse to using herbals, please consider purchasing Stephen Buhner's more recent books on the herbal treatment of multidrug resistant bacterial and viral infections. As well as his mycoplasma/bartonella coinfection book.

 

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

 

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria

 

Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections

 

The coinfection book describes in detail how inflammation effects the body, and how the specific herbs he uses help to dampen this response as well as modulating the immune system. And this is apart from their antibiotic action.

 

I truely believe that DD has shown the improvement we have observed because I used knotweed throughout her abx treatment. We are seeing further gains with his complete bartonella protocol after adding cryptolepis for protozoan/viral infections.

 

I know you are dealing with ehrlichia, but the main herbs he uses for viral and bacterial infections seem to be the same. These herbs have wide coverage and application. You will not be disappointed.

[Vbakersimon]

Sorry off topic but do you boil the drops to get the alcohol out? Can you give more detail on that?

 

Hi there,

Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts.

[Vbakersimon]

The anti-inflammatory japanese knotweed helped us so much with herx-induced inflammation. If you are dealing with lyme and co, and not averse to using herbals, please consider purchasing Stephen Buhner's more recent books on the herbal treatment of multidrug resistant bacterial and viral infections. As well as his mycoplasma/bartonella coinfection book.

 

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma

 

Herbal Antibiotics, 2nd Edition: Natural Alternatives for Treating Drug-resistant Bacteria

 

Herbal Antivirals: Natural Remedies for Emerging & Resistant Viral Infections

 

The coinfection book describes in detail how inflammation effects the body, and how the specific herbs he uses help to dampen this response as well as modulating the immune system. And this is apart from their antibiotic action.

 

I truely believe that DD has shown the improvement we have observed because I used knotweed throughout her abx treatment. We are seeing further gains with his complete bartonella protocol after adding cryptolepis for protozoan/viral infections.

 

I know you are dealing with ehrlichia, but the main herbs he uses for viral and bacterial infections seem to be the same. These herbs have wide coverage and application. You will not be disappointed.

Thank you for the book recommendation - I will check it out! In the interim, can you tell me what brand of Japanese knotweed you use? I use herbs with my 2 sons (and for my own Lyme post-treamtent management), as I've seen their benefits firsthand. I'll ask our LLMD for dosing info.

 

Thanks again!

[rowingmom]

The dosages for all adult and children's protocols can be found on Buhner's website, as well as suggested retailers:

 

http://buhnerhealinglyme.com/

 

See the left side of the main page for the coinfections protocol that you need.

 

All of his books contain this information as well. The herbal antibiotic book contains a formulary including instructions on making decoctions, tinctures, ointments, glycerites etc:

 

His site used to be interactive, with people posting questions and Stephen answering, but I think he has gotten too busy for that now. Anyway, there is lots of information. He has an associate who can be contacted for consults as well.

 

For DD (80 lbs) I use 1/4 tsp japanese knotweed tincture TID and 1/4 tsp japanese knotweed decoction TID.

 

In addition she is using sida actua, cryptolepis/sida/alcornea, teasel and A-Bart tinctures, powdered houttuynia and cordyceps, low dose astragalus and some other supplements.

 

I purchase the knotweed tincture from here:

 

http://www.woodlandessence.com/herbal.htm

 

The tincture is $40 for 4 oz.

 

And the organic powdered knotweed herb from here:

 

http://www.1stchineseherbs.com/hu_zhang.html

 

The organic powdered rhizome is $15/lb which lasts more than 6 months.

 

Buhner recommends both of these retailers.

 

I am using Buhner's full bartonella protocol (minus l-arginine, plus cryptolepis/sida/alcornea (also from WoodlandEssence,)) for myself as well and have found it to be immensely helpful.

Edited November 10, 2013 by rowingmom

[Hopeny]

 

Sorry off topic but do you boil the drops to get the alcohol out? Can you give more detail on that?

 

Hi there,

Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts.

 

Sorry I feel like a dummy but could you tell exactly me how you boil the tinctures? Do you pour it all in a pan, boil for a few seconds, and then pour back in the bottle? I use a few of these (samento, low alcohol milk thistle, burbur sometimes) and would love to get the alcohol out. My doctor mentioned boiling but I just wasn't sure exactly the best way to do it. all at once? in a pan? a bit at a time? thanks in advance

[Vbakersimon]

 

 

Sorry off topic but do you boil the drops to get the alcohol out? Can you give more detail on that?

 

Hi there,

Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts.

 

Sorry I feel like a dummy but could you tell exactly me how you boil the tinctures? Do you pour it all in a pan, boil for a few seconds, and then pour back in the bottle? I use a few of these (samento, low alcohol milk thistle, burbur sometimes) and would love to get the alcohol out. My doctor mentioned boiling but I just wasn't sure exactly the best way to do it. all at once? in a pan? a bit at a time? thanks in advance

 

I put a small amount of water in a small pot, and bring it to a boil. Then, I squeeze the 30 dropperfuls of tincture into the mixture (hence, the 'flash boiling' part). The alcohol is immediately boiled out, and then I let the mixture cool for approx. 1 hour. Once it's cooled down, I put it into a cup of pommegranate juice and give it to each of my sons to drink. They don't even kow it's in there :-)

[Hopeny]

 

 

 

Sorry off topic but do you boil the drops to get the alcohol out? Can you give more detail on that?

 

Hi there,

Re: your question about why I flash boil the herbs before giving them to my son, it is because of the grape alcohol that they contain. I do a flash boil to get the alcohol out, which not only removes the alcohol, but also makes the herbal mix MUCH more palatable to my kids! They drink it without any problem. I would definitely flash boil it if you have any GI issues, as the alcohol could exacerbate it even in small amounts.

 

Sorry I feel like a dummy but could you tell exactly me how you boil the tinctures? Do you pour it all in a pan, boil for a few seconds, and then pour back in the bottle? I use a few of these (samento, low alcohol milk thistle, burbur sometimes) and would love to get the alcohol out. My doctor mentioned boiling but I just wasn't sure exactly the best way to do it. all at once? in a pan? a bit at a time? thanks in advance

 

I put a small amount of water in a small pot, and bring it to a boil. Then, I squeeze the 30 dropperfuls of tincture into the mixture (hence, the 'flash boiling' part). The alcohol is immediately boiled out, and then I let the mixture cool for approx. 1 hour. Once it's cooled down, I put it into a cup of pommegranate juice and give it to each of my sons to drink. They don't even kow it's in there :-)

 

That's great thank you. I will try it

[nitshel]

Can someone comment on how long (hours/days) after the first dose of Abx is one likely to see herxing? Is it safe to say that if symptoms become worse say 2 weeks after start of Abx, then all other things being equal its probably not herxing but something else (say, Candida) happening?