Bartonella, Babesia, Not sure where to turn next

Hi everyone,

My husband and I have just come back from another discouraging visit with the LLMD and I am feeling a little hopeless and helpless. Would love any input or thoughts.

My husband has been dealing with the following symptoms since December 2015:
- Numbness in hands and feet (always present, sometimes worse than others, recently sharp pains in fingers that comes and goes)
- Leg fatigue (can’t stand or walk more than a few minutes before buckling, drags feet and trips)
- Blurred vision (worsens with exertion)
- Headaches, brain fog, memory loss

He tested positive for Babesia through Igenex and has broken out with a few Bartonella ‘cat scratch’ rashes so I don’t doubt that is what we are facing. However, I’m feeling like our LLMD is running out of ideas for him. The doctor expressed concern and a little bewilderment today at the fact that my husband has no soreness, tenderness, or pain. I understand those are common symptoms, especially with Lyme (I am not even sure he has b. Burgdorferi, possibly just the two co-infections) but that seems to be stumping the doctor to the point that he is just saying “let’s phase out of the antibiotics and see” then went on to talk about how much worse his other patients have it. I know that relatively these symptoms are mild, but they still have reduced my husband’s quality of life exponentially and I can see the defeat and frustration he’s trying to keep at bay.

My husband has pulsed several combinations of antibiotics/anti-malarials over the past year, and I have incorporated a whole host of herbs and supplements, anti-parasitics, you name it. The doctor today suggested Houttuynia which we have not yet tried. What gave me pause was that the doctor also brought up the MMS protocol, which I understand is controversial and potentially problematic. I am starting to wonder if an LLMD more well-versed in neurological symptoms could help, but I don’t even know where to start to go about finding one. I’m not willing to believe just yet that we’re dealing with only nerve damage at this point. I feel like he still has an active infection but it’s just getting discouraging.

My husband thinks the Babesia is truly his biggest hurdle at the moment; he says the leg fatigue feels like depletion of oxygen to the muscles which I think is consistent with Babesia, but also could be Bartonella? I don’t know.

I’m not sure what I’m looking for here so I sincerely apologize for the deluge of disorganized information. If anyone has any input or has experienced these diseases in the same way, and possibly has had better luck with an LLMD who understands neurological symptoms, please feel free to share your experience. Thank you all so much.

I have also heard that about Babesia, and I'm feeling like it may well be the case here.

He started Atovaquone for Babesia in October 2016, and started Coartem in February 2017 (pulsing the two). He has taken Amoxicillin, Azithromycin, Rifampin, and Bactrim for Bartonella (also pulsing). He's been on combinations of those antibiotics since April 2016.

You're right about the pain - and I got frustrated as I was writing out my original post, because when seeing the symptoms all listed out it sounds like much more than when we are in the office discussing it with the doctor; a lot of it gets glossed over or not considered when making statements like the one you mentioned.

I am so grateful this is a place I can find recommendations for a new LLMD. I will post now, thank you so much for taking the time to respond.

It's Gene Parmesan!! Aaaaahhhhhh!! *claps hands*

But on a serious note, I think it may be time for another set of eyes for your hubby's case. Trust your gut.

Hi Gene,
I know we are all very different, and our responses to medications are varied. But, I had trouble moving forward until I addressed Babesia.

I am in my third month of taking Azithromycin and Mepron consistenly for Babs. I just saw my LLMD this week and asked him, as many of my Babs symptoms have faded, how much longer he thought we should treat Babesia.

I had heard that "5 months" was standard. He said that "some people are cured in 5 weeks of treatment with Mepron (+ABX) while others take a year." It all depends on the extent of the infection.

It could just be that your husband needs a more consistent and longer approach to treating Babesia. Perhaps getting a second opinion from another LLMD would be a good idea.

I have seen 3 LLMDs. While I still have a way to go, my third has made the difference for me.

Wishing your husband the best,
Kelly

Sorry, I meant "5 months!"