Day 16-he is herxing again

[cobbiemommy]

My DS is herxing hard again only 10 days after the last herx. He has been crying and is very upset. I know some of it is the limitation of the picc line, but I think the level of emotion is because of a herx. He wants a normal life without pain, pills, iv meds, and restrictions. He feels like God has abandoned him and that God could make this go away if he wanted. It is truly heartbreaking. I can't wait for the days when he will be truly healthy.

 

On the bright side, his level of energy seems to be way up. He is not running any races or anything, but at least he is not telling me how tired he is (like he did before IV).

 

I dreamed the other night of him being taller than me and playing football. He has never played football because of his illness so I guess the dream is just wishful thinking. DS has very broad shoulders and his hands are going to be huge (just like his daddy) and he just got part of his braces off, so his smile is awesome. I pray for him and all of our children that they get to enjoy just being a kid or a teenager.

[beeskneesmommy]

This post made me cry. My DS6 just got thru debilitating headaches from IVig on Mon. and Tues. that made him whimper in a fetal position for hours. In the past, we have experienced upsetting herxing as well. However, you are doing the right thing by your beautiful son and I know you love him with all of your heart. Hang in there and have faith! I'll be rooting for you guys and perhaps you will watch him out on the field sometime - even if for a Thanksgiving family/friend game. Big hugs! -Kath

[rowingmom]

Herxing is so hard on kids. When we started continuous abx combos that included tindamax, DD11's herxing increased significantly and wouldn't quit.

 

Before we added tindamax, she would herx within 2-3 days of combo changes but would gradually improve through the next 7-10 days and then remain at a good baseline until the next change. With daily tindamax this didn't happen. I think her body just wasn't able to detox from the continuous high level of die-off. Even though we were doing all the detoxing we could - lemon water a couple times daily, epsom salt baths daily, 150 billion probiotic cultures daily, psyllium supplements to keep the bowels moving, methylated versions of B vitamins, liposomal glutathione and lots of water to drink - she was unable to clear her system of the die-off toxins. And symptoms just kept getting worse.

 

We didn't see real resolution of herxing until we started pulsing the tindamax combinations. We used 3 days on, 4 days off pulses. Following her excel chart I could see the initial herx on day 1 and 2, and then the decrease in die-off symptoms through the rest of the week until the next pulse. It was easier on her to herx through the weekend and then feel better for school. She didn't look forward to Fri-Sat, but understood that symptoms would be short-term. Her symptoms at the beginning of the pulses would never make it to the high levels they had reached after 2 weeks of continuous tindamax treatment, and that was easier on her too.

 

Whether she could have pushed through continuous, high level die-off, IDK - our LLMD suggested pulsing as soon as she saw what was happening. Pulsing worked well for us and gave DD11's body the break to detox that it obviously needed. She reached her best baseline with this style of treatment using heavier abx (malarone, plaquinel, tindamax, minocycline, azithromycin).

 

If herxing appears cyclic, while everything else remains constant - this could be an indication of the activity cycle of the organisms being killed off. His increase in energy level is very encouraging. Hang in there and do all you can to detox, I know you are doing your best.

Edited May 24, 2013 by rowingmom

[Kathy4Him]

Moms, what are some of the things you see with herxing?

[Hopeny]

I'm so sorry, how is his Vitamin D3 level? I have noticed a real correlation with D levels and DD's mood. Keep believing, he will get better!

[beeskneesmommy]

KathyN: My son had a very obvious herx when we stsrted Azithromycin/Augmentin combo 2 years ago. he had classic SC snake-like movements of the head and neck. I have only seen them a few times with him but it is frightening. He also had an extreme increase in OCD symptomology, including walking in patterns (Saving Sammy). That herx lasted for about 2 weeks off and on, after which he continued true recovery with that combo of abx.

[sf_mom]

I couldn't agree more and our experience has been similar to Rowingmom. Sometimes even followed by a much longer Herx. When we treated our younger son for Bartonella he raged fairly intensely on and off for first two weeks. Then we got more and more days in between rages. Eventually he would rage every seven days 'Wednesdays'. Those weekly rages began to resolve around the five month mark. Thankfully there were other indications of improvement that gave us confidence to keep treating.

 

Our Herxs included an increase in OCD, tics and rages.

[rowingmom]

Moms, what are some of the things you see with herxing?

 

DD11's herx reactions pretty much included all her previously presenting symptoms, but magnified as if in a flare. Emotional lability, rages, increased motor/vocal ticcing, shin/forearm pain, headache. OCD has not been a real problem for her and did not appear during her herx reactions.

[Kathy4Him]

Thanks moms, I guess I don't really know what is a herx what is not, when we gave ds biaxin a few weeks ago within a week or so he started with movements such as turning his head right to left which increased as days of biaxin went on. He began to move much slower throughout the day, eating breakfast by 12 pm and taking 5 hrs upstairs to get showered, dressed, whatever he does till he would come downstairs, this of course unless he had counseling mon wed fri at 2pm. I thought the med was making him worse so after 2 weeks changed back to zith. within 4 days head turning stopped.

 

Now I wonder if I should have kept him on biaxin. Do you moms think med was helping and that is why he was acting the way he was? I have no idea what to do. Dr. wanted to try biaxin for 2mthsat 500mg day.

 

Does herx tend to make ocd worse and how long does it usually take to see a difference for the better?

 

Thanks so much, I am def. in need of help.

Kathy

KathyN: My son had a very obvious herx when we stsrted Azithromycin/Augmentin combo 2 years ago. he had classic SC snake-like movements of the head and neck. I have only seen them a few times with him but it is frightening. He also had an extreme increase in OCD symptomology, including walking in patterns (Saving Sammy). That herx lasted for about 2 weeks off and on, after which he continued true recovery with that combo of abx.

[cobbiemommy]

Sometimes a herx will make all symptoms worse, and sometimes it will just make a single symptom worse. It may be a symptom that had been getting better, but suddenly takes a turn for the worse and then resolves. For us, it almost always is emotional issues. We still have the bartonella rash; it has flared again after being almost non-existant. How many of those little buggers could there possibly be?????? :blink:

 

Today, he was so much better. He asked if he had a nervous breakdown. I said no, just a little meltdown, but that it was OK. Summer vacation starts today, so that will take a lot of the stress off of him!!

[mdmom]

Sent you a PM.

[julie_2girls]

wow this was helpful! my 17 yr just started abx for lyme (she also has babesia, bart, ehrlichia, mycoplasma, viruses, mold toxicity). we will be adding in malarone for babesia and then another abx. We may go to bicillin injections very soon too since she is tolerating the omnicef (well except for the herxing but that is telling us something is happening, right). she also needs to use alinia to get gut parasite and then antiviral. so i have 7 prescriptions at home we will be adding systematically. only one week into the first abx and the herxing is crazy with increase in rage. why does it have to be that symptom! yesterday i was seriously afraid for my safety. i was by myself. luckily today is much more mellow. i guess if i know they will eventually stop and maybe for a whole day we can do this...it is frightening but i guess necessary. ugh! thinking ivig needs to be in the plan soon too. we have mostly been working on gut health, detox, methylation the last few months. now we are into the killing bugs part (finally got to see llmd). hold on tight!!! it is so helpful to hear others that have been thru this already:)