Crying=Herxing?

[T_Anna]

After speaking to Beth Maloney, of Saving Sammy, I decided to up DS15's Augmentin. He has only been on high dose once for 10 days in December and again on 2000mg since April 5.

 

She also mentioned that certain abx can make strep bacteria stronger (like the Azith).

 

I called Dr.T and he decided that while waiting to run the Cunnigham and other blood tests we should take him off Deplin - thank you LLM for the heads up on the Folate Trap and Azithromycin (he's still on Doxcycline).

 

At 5am, I woke up to DS crying hysterically. Can this be a herx? Or is it maybe too much NAC?

 

I can put up with crying, if it means "something" is happening. Yesterday after the first higher dose of Augmentin, he started sweating, I haven't seen him sweat in months (and this is a kid who was always hot).

 

Any opinions?

 

If I take the NAC down (he's been on 4 NAC pills since April 18 and we havent seen any positives), then I can probably stop consulting Dr.Hollander who had added the Deplin, upped the. Luvox and doubled the NAC.

 

I just wish I wasn't "playing doctor" and someone knew how to get my kid well!!!

 

Thanks as always,

T.Anna

DS15 - finally asleep at 6:20am

[T_Anna]

I'll reply to my own post. I think that it is herx, am hopeful we are finally finding a crack and wedging him free

 

Looked over my log and it seems that IVIG did more good than we thought, he seems to have declined since then.

 

Really hoping we are getting at the infection.

 

T.Anna

DS15

[sf_mom]

If I remember correctly from your prior post... I also thought his dosage of Doxy and Azithro were low for his age and weight.

 

Once things settle from increase in Augmentin, you might rethink Doxy dosage with your Dr.

 

Also with him always running hot and now sweating might be an indication of Babesia. Does he ever have thigh pain or headaches in the base of his head? Did you test for TBI co-infections?

Edited May 7, 2013 by SF Mom

[T_Anna]

Hi SF Mom,

 

I meant that before this flare, he was always a warm sweaty child and since December, I never really noticed him sweating.

 

I hope you're right about the dosage. Good idea about the doxy too.

 

He was tested for Babesia and doesn't complain of leg cramps. But I will prob re-run the tests as well as ask for Lyme tests from igenex.

 

T.Anna

DS 15

Edited May 8, 2013 by T.Anna

[sf_mom]

Excessive sweating, night sweats, temperature intolerance, running cold then hot, deep thigh bone pain (not leg cramps), headaches at back of head, shoulder and neck fatigue, nightmares (saw your other post), night waking are fairly distinct symptoms of Babesia or BLO. It is unclear if you ran Igenex originally and who tested for Babesia. I am not sure rerunning Igenex at this point in time would be of any value as you may not get converted results or missing specific strain. 3 of 4 in our family come up negative but were treated due to congenital nature of infection and treatment response.

 

Here is a description by a local Dr. here in CA. The reason he uses BLO is they are only able to test for two strains and there are 11 known strains. He does leave off some the more typically symptoms like headaches at back and base of head, thigh pain, etc.

 

 

"Overview: When a patients symptoms are predominately head and neck you must think of BabLo. When the patient has depression, anxiety, panic disorder, oCD, ADD with sweats that are worse at night, think BabLo. If the patient has severe memory and cognitive dysfunction with the same sweats as above, BabLo must be considered. For the patient (with any of the above) that also has temperature intolerance, layering clothing at night due to chill then throws off the bed covers due to overheating, BabLo cannot be ignored. If this same patient has racing or irregular heart rate and it is worse at night you are getting even closer to confirming BabLo. Air hunger can come with it. If the patient (with any of the above) describes their headache as weird, pressure, moving sensations, hot or cold, worse behind eyes, crown or in the occipital area consider BabLo. Babesia causes severe insomnia that is resistant to treatment."

 

 

BabLO Symptoms Sorted by Organ Systems:
Chief Complaint: Usually mental and/or emotional
Head:

• Disabling problem with short-term memory, concentration.
• Progressively disabling memory.
• Difficulty with direction.
• gets lost in familiar place.
• Difficulty with simple linear thinking.
• Severe depression (can have suicidal ideation).
• Fear! Fear!, Fear!, oCD, anxiety to panic.
• Any symptom from the DmS-IV.
• Pressure sensation (more than headache), occipital, crown and behind eyes.
• Various sensations in the head, hot spots, numbness, crawling, crown tenderness. Hypothalamic Dysregulation:
• Severe sleep disturbance, delayed sleep onset and frequent waking, with difficulty falling back to sleep.
• Weird dreams to nightmares.
• Temperature intolerance, hot and cold with chill dominant.
• Can have occasional fever, but usually can’t get warm.
• Sweats, can be drenching, worse at night.
• mild fluid imbalance, overloaded or dehydrated.
• Appetite swings, can’t get enough eat, or no appetite

Proper dosages from our LLMDs perspective for child your DS's size and weight would be: Augmentin 4,000 m.g., Azithro 500 m.g., Doxy 300 m.g.

[T_Anna]

<<Proper dosages from our LLMDs perspective for child your DS's size and weight would be: Augmentin 4,000 m.g., Azithro 500 m.g., Doxy 300 m.g.>>

 

What he has from the symptom list:

• oCD
• Any symptom from the DmS-IV.
• delayed sleep onset.
• Weird dreams to nightmares.
• mostly no appetite

 

 

I will see about upping the Doxy to 300mg.

 

He tested Negative to Babesia:
Babesia microti Antibody Panel Babesia microti IgM <1:10 Neg:<1:10 02
Babesia microti IgG <1:10 Neg:<1:10 02
This test was developed and its performance characteristics determined
by ViroMed Laboratories.

 

His Lyme was Negative, but it does show the following:

IgG P23 present/abnormal

IgG P39 present/abnormal

 

What does all this mean?

 

Thanks in advance,

T.Anna

[sf_mom]

I have never heard of the particular lab used to test for Babesia. That doesn't mean it isn't a good lab, just never heard of them. Plus you checked for one specific strain of Babesia. There are two strains that are commonly tested. You might also want to check for WA-1 Bebasia Ducani.

 

Both your son's positive bands are Lyme specific. Our LLMD would mostly likely do additional confirmatory testing and a treatment trail to confirm diagnoses.