Eye Pain Herx

[cobbiemommy]

DS, 12, is going through some sort of major herx. He has joint cracking, spine pain, foot pain, and eye pain. We have never dealt with eye pain before. He says that the front part of his eye hurts. Anyone else dealt with this?

 

He is very depressed at this point and feels his treatment is never going to end. I think Minocin is kicking some Bartonella butt! His rash is almost 90% gone, but the tips of the rash are still there.

 

We are trying to detox, which is tough around all of the dosage times. Any suggestions would be appreciated.

Thanks

[Suzan]

I recommend the batha if you can fit them into your schedule.

 

1 cup apple cidar vinegar, 2o min bath 2x a week and

1 cup epsom salt and 1 cup baking soda, 20 mih bath 2x a week. I saw some good progress when we started this.

 

The only other thing about the eys pain, dd9 has high oxalates and our doc was recenlty talking to me about this. It can cause chrystals in the eyes and cause a lot of pain. To combat it one of the things you can do is eat low oxalate foods and avoid the high. To find out if this is an issue you have to get the organic acids test done which is pricey. So I don't know if it could be related or not but just thought I'd throw that out there. We have not had eye pain as a herx but I'm certain it can be a herx too.

 

Susan

[sf_mom]

Geez..... hate to bring it up again but its a symptom of BLO "Babesia like organism" or babesia. I have a feeling you've treated the bartonella fairly aggressively allowing the symptoms/infection to now take predominance.

 

"* Can cause headache, occipital and/or frontal (especially behind the eyes), or the sensation of pressure without pain."

 

http://wayneanderson.com/pages/diseases/babesia

 

-Wendy

[cobbiemommy]

Geez..... hate to bring it up again but its a symptom of BLO "Babesia like organism" or babesia. I have a feeling you've treated the bartonella fairly aggressively allowing the symptoms/infection to now take predominance.

 

"* Can cause headache, occipital and/or frontal (especially behind the eyes), or the sensation of pressure without pain."

 

http://wayneanderson.com/pages/diseases/babesia

 

-Wendy

Wendy,

You are a genius! Out of 17 possible symptoms, he has 12. I am in shock!

Cobbie

[aidansmom]

Geez..... hate to bring it up again but its a symptom of BLO "Babesia like organism" or babesia. I have a feeling you've treated the bartonella fairly aggressively allowing the symptoms/infection to now take predominance.

 

"* Can cause headache, occipital and/or frontal (especially behind the eyes), or the sensation of pressure without pain."

 

http://wayneanderson.com/pages/diseases/babesia

 

-Wendy

Wendy,

You are a genius! Out of 17 possible symptoms, he has 12. I am in shock!

Cobbie

 

Cobbie - Perhaps this is a huge missing piece for you. Has your LLMD tried to treat for Babesia?

 

I also identified with these symptoms for Aidan and had no clue that some of these could be Babesia. I am not sure of the eye pain due to his lack of communication ability... but we often would see him rub his eye or that area of the face like something was going on there - perhaps this is why. Our Dr has been treating him for Babesia since the Beginning of Oct even though there was no positive test to say he had it. He is on Mepron, a Very expensive and nuclear-yellow liquid, and artemisinin - a supplement that I have read can be quite powerful for Babesia, in addition continuing abx. At first I think we had herxing pretty badly but I think I am all of a sudden seeing some major improvement (fingers crossed). We are supposed to treat on this protocol until the end of the month when he had a follow up visit. OUr Dr pulses the abx and the Babesia meds - every other week only Mon, Wed and Fri.

[sf_mom]

Cobbie,

 

I just have this intuition on his behalf and hopefully I am not hounding you too much about treating him for it. In our family only one person had positive antibody results for Babesia, younger DS. Because its Congenital Lyme we figured all our children probably had Babesia. We did confirm via ART muscle testing that everyone in our family is positive for Babesia and everyone being treated is responding 'extremely' well to antibiotics. We are still focusing on bartonella for younger DS but hope to make a rotation after New Year. I also think because Bartonella is often believed to create a lot of OCD and anxiety symptoms... Babesia gets overlooked when there are no positive titers or marginal results. Clearly Dr. A believes the infection can create a lot of anxiety and OCD symptoms. A couple of things I think got left off symptom list are: air hunger, deep thigh bone pain, dull headaches at back and base of head, shoulder fatigue along with headaches. The one symptom that resonates for my older DS the most is temperature intolerance. "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". My son is always pulling off his blankets before he goes to bed at night even in the winter.

 

I am hopeful your son will be helped tremendously when treated. We are on Mepron/Artemisinin/Herbs to treat similar to Aidnan's mom but only pulsing Artemisinin.

 

-Wendy

[cobbiemommy]

Cobbie,

 

I just have this intuition on his behalf and hopefully I am not hounding you too much about treating him for it. In our family only one person had positive antibody results for Babesia, younger DS. Because its Congenital Lyme we figured all our children probably had Babesia. We did confirm via ART muscle testing that everyone in our family is positive for Babesia and everyone being treated is responding 'extremely' well to antibiotics. We are still focusing on bartonella for younger DS but hope to make a rotation after New Year. I also think because Bartonella is often believed to create a lot of OCD and anxiety symptoms... Babesia gets overlooked when there are no positive titers or marginal results. Clearly Dr. A believes the infection can create a lot of anxiety and OCD symptoms. A couple of things I think got left off symptom list are: air hunger, deep thigh bone pain, dull headaches at back and base of head, shoulder fatigue along with headaches. The one symptom that resonates for my older DS the most is temperature intolerance. "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". My son is always pulling off his blankets before he goes to bed at night even in the winter.

 

I am hopeful your son will be helped tremendously when treated. We are on Mepron/Artemisinin/Herbs to treat similar to Aidnan's mom but only pulsing Artemisinin.

 

-Wendy

 

The second LLMD said Babesia and treated it in a minimal form, only taking Mepron one day a week and Artemisinin for three days a week. We are back to LLMD #1 and he wanted to focus on the Bart because of the explosive rage. We treated with Rifampin and a bunch of different drugs until we got to Minocin. Minocin seems to be the Bomb for us! The only problem is he herxed so hard that we had to take a five day break. We are starting back on the Rifampin and Minocin today, but going slower on the Minocin. We go to the LLMD on the 21st and hope he will at least pulse something for the Babs. Fatigue is definitely his worst symptom.

 

Went to an endocrinologist yesterday. She thinks DS has Metabolic Syndrome. I think son has Metabolic Syndrome triggered by Lyme and Friends that went untreated for so long. We are doing some testing. They are also investigating Cushings, but son is growing taller, so not too concerned on that one! No sugar for him, no candy, no juice, no soft drinks at all. I know we should have been doing this all along, but son would not have been compliant before. This morning he served himself water for breakfast. I feel blessed by that alone.

 

Also, DS was tested for Eosinphil Cationic Protein by LLMD number one. His numbers were sky high. This is a common marker for Babesia. So I do feel confident going forward with Babs treatment. I just don't want to overwhelm his body with killing all this crap at once.

 

Thanks Wendy!

 

Cobbie