Will This Cause Problems?

[louris]

I know a few on this board are undergoing, or have undergone, treatment for babesia.  It is my understanding that this is usually a 120+ day course of treatment.  My doc wants to stop treatment now (after about 84 days) since there has been no change in some symptoms including my hgb reading that bounces between borderline normal (13.2) and readings in the mid 11's.  Does this seem right?  Thanks.

[Maz]

[user=290]louris[/user] wrote:

I know a few on this board are undergoing, or have undergone, treatment for babesia.  It is my understanding that this is usually a 120+ day course of treatment.  My doc wants to stop treatment now (after about 84 days) since there has been no change in some symptoms including my hgb reading that bounces between borderline normal (13.2) and readings in the mid 11's.  Does this seem right?  Thanks.

Hi Louris,

Babesia, like malaria, is a relapsing, remitting febrile disease, and there are a few different strains of babesia, some more difficult to treat than others. The other consideration is that some people respond quickly to treatment and others take several rounds of treatment…a very individual thing.

If you check out Dr B's Treatment Guidelines, he says (page 24), regarding babesiosis treatment:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

[align=left]”The duration of treatment with atovaquone combinations for Babesiosis varies depending on the degree of infection, duration of illness before diagnosis, the health and immune status of the patient, and whether the patient is co-infected with Borrelia burgdorferi. Typically, a three-week course is prescribed for acute cases, while chronic, longstanding infections with significant morbidity and co-infection will require a minimum of four months of therapy. Relapses have occurred, and retreatment is occasionally needed.”[/align]
[align=left]You may want to ask your Lyme doc what his rationale is for withdrawing your meds at this stage. LLMDs like to change up protocols regularly and do long pulses.[/align]
[align=left]Have you had your B12 levels read? Pernicious anemia (sometimes caused by babesia) can be the result of low B12. If you're supplementing with sublingual B12 (in combo with a B complex), you might want to ask about B12 shots, because some people have difficulty metabolizing oral forms of B12. My best guess here, Louris, is that with a history of gut issues, that this may be an issue for you and is worth asking your doctor about: [/align]
[align=left]http://wiki.answers.com/Q/Explain_why_individuals_with_pernicious_anemia_have_a_low_hemoglobin_level[/align]
[align=left]Hang in there, Louris, you'll work this out. Lyme treatments aren't a science but an artform, because, as I'm sure you're fast becoming aware, there are so many unknowns. LLMDs tend to go by symptoms more than anything, but it's critical to rule out all possibilities so that they can avoid unnecessary treatments, too. [/align]
[align=left]Peace, Maz[/align]

[louris]

Thank you for your reply.  His rationale, which I don't completely agree with, is that there hasn't been any significant difference in this ongoing facial pain/facial neuralgia problem, nor the anemia, therefore it makes sense to stop treatment.  It has helped some of the headaches though.  I couldn't argue, because I can't speak unless I want to find myself in immense trouble with pain and spasms.  We are aiming to do a CT of my head (finally!), but I need some help with pain first in order to be able to lie down since that initiates a painful attack.

I sent him a fax.  I asked him why he started the treatment if he was not going to follow a course of what seems to be an appropriate length.  The positive thing is that I will have been on the azithromycin for 120 days (which per my understanding is the life span of a red blood cell) and have enough atovaquone to last 120 days plus a bit more (received via parcel).  The artmesiae is not an issue.  The only thing is is that I started the azithromycin 14 days before the atovaquone was started (due to complexities getting the medication), so I don't know if that matters.  The other positive thing is that it is my understanding that azithromycin stays in the system for 16 or 17 days after last dose.  Therefore, I hope it will sufficiently cover 120 days.

I take 2mg sublingual B12 daily.  I also give myself one B12 injection weekly.  I think I am covered since the last time I had my B12 serum checked, it was well above normal and I was only taking sublingual at that time.  I will ask him about this possibility at my next appointment in January as I imagine that any infection could wreak havoc on this also.

Keeping my fingers crossed that he is making the right call.

[louris]

The doctor called back.  He stated that he can extend the prescription for the azithromycin for one more script.  Crisis averted.

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