philamom

I don't see a link to the article. Can you post it again. Thx

Dd is having a very tough time with the babesia treatment (malarone, and then Enula 1 drop added 3 days ago), and I'm also exhausted from her symptoms as well. I would like to give her a 2-3 week break. Do I risk an issue with resistance? tia

Thanks Rowingmom

Yes, its a generic of malarone, taken twice a day. Any nausea or vomiting associated with it? Can it be taken same time as probiotics? thx

Thanks for feedback. I'm waiting for prescription to see what med was prescribed.

Old timer here- just found out my daughter tested positive for babesia, after all these years. She tested positive for babesia duncan, so officially the 3 B's (borrelia, bartonella, babesia). She is positive for babesia through igenex, bartonella through quest, borrelia through Advanced lab culture and Igenex. Anyway, picking up her new treatment tomorrow. Any advice on new treatment? I assume I should expect a herx? Thanks :--)

Our selection is florastor, culturelle,Klaire ther-biotic detox support.

Nicely said! Thanks for sharing!

Same here.

psychologist

My daughter was positive twice through this lab. First in Dec 2011, and again this past June. She mainly tests positive with Igenex, but there have been times when the Igenex test is negative - the borrelia can go into cyst form and not yield a positive. There are other reasons for negative results form traditional testing as well. Bottom line in my opinion - positive advanced culture means lyme disease. Seek treatment.

So sorry- I didn't realize your daughter was so young- thought she was older. My daughter had sinus issues from age 18months to age 7 when she received ivig. Our ent recommended surgery but thought the issues might return because at that time we didn't know the underlying cause (6 yrs ago). Most doctors said allergies, but nothing helped except constant antibiotics to treat the sinus infections. The allergy sprays and meds had an opposite effect. Ivig took care of all my daughter's sinus issues. I'm about to hop on a plane so sorry for any typos. Thinking of you!

We are currently using rifampin, cipro and amox for lyme/bart/pans.

One of the symptoms we deal with dd's lyme/bart/pans is leg pain (off/on with severity). Never as severe as your going through, except somewhat in 2011 when we had to carry her upstairs at times from our living room. At that time she had an extremely high sed rate, ana, and erythema nodosum nodules. When my daughter's ana increases (its been positive since 2011), her leg pain increases. At times we need a wheelchair when visiting places that require a lot of walking (again when her ana is increased). My daughter has the HLA DR4 gene (which is shown to increase leg pain in lyme patients). Doctor definitely should run some lab tests: Sed rate C- reactive protein ANA, etc (for autoimmune/JA). Can give you a recommended list of other labs in this category if desired HLA DR4 We use liquid advil capsules and Alka Seltzer Gold (must be gold) for some symptom relief. This past spring we had to resort to a steroid taper to decrease inflammation (again ana was high and leg pain was bad).

I mentioned on another post that when I was younger (I thought it was my late teens but looked up paperwork and it was actually around 25) I had a pituitary tumor - 5mm microadenoma. It resolved on its own when rechecked a year later. In the last 9 months my daughter's labs have been leaning towards hypothyroidism. She went through a severe depression late spring. We have her on Armour Thyroid currently, but in the process of scheduling an evaluation with an endocrinologist.

This happened to me in my late teens. The contributing factors were exercising too much daily, and a small pituitary tumor. The tumor was found by an mri with dye and resolved on its own.

Here is some wording that may be helpful: As _____ symptoms may occur in a waxing and waning manner and may not be evident at all times, I recommend that the above illness and symptoms be considered in all academic planning decisions to enhance the academic progress of this patient. (You may want to be more specific with accommodations). Can you pm your email to me?

We met a family while receiving ivig whose child has it. The child has a lyme/autoimmune disorder.

Nancy, I tried to send you a pm but your mailbox is full.

I know this is an old thread, but was wondering if you could share your experience with Kevin. Or anyone who has used him. Feel free to pm me. Thanks!

Brag away!!! [tears] You too llm

Have you rechecked her thyroid levels yet?

We just got back similar results (6 weeks after ivig): Dopamine D1: 8000 (normal 500-2000) Dopamine D2: results not back yet Lysoganglioslide: 1280 (normal 80-320) Tubulin 8000 (normal 250-1000) Cam K: 95 We ran this study back in 2009 when it was part of the research study. Dd's Cam K was 136, drawn after a steroid burst. D1, Lyso and Tubulin were lower. Anyone have any input on these other anti-neuronal antibody titers? edit- has anyone else had Anti-tubulin at 8000?

We used Minocin in combination with another abx a while back for bartonella.

So he did better on Armour? -not sure how the triple post happened