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Bartonella and babesia3times

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Posted 5/14/2023 3:01 PM (GMT 0)

I have had r.a since 4 and lupus since 13.
It all started when they put me on CellCept at 26 and high dose of prednisone and I went camping. I started to get super weak. And two years later, Mount Sinai found out that I had to Chiari malformation.
So I had to go to the hospital, and got brain surgery.
Then after that, a very smart doctor said, I think that you might’ve had a tick bite, tested me, and I was very very hot for Babesia. It was so bad it was on the blood smear Then I got professional testing recently and I came up positive for bartonella and babesiosis.(recent igenex)(took me 4 years to do it)
I have such a pain in my feet and my legs that I want to cut them off and no doctors are willing to prescribe opioids. I have two children and I don’t know what I would do without my husband . I would have to go live at my moms and just laying in bed all day. I am absolutely useless.
I’m going to try azithromycin and atovaquone again and I’m going to do high-dose, vitamin C, treatments, and glutathione. Trust me, I never thought I’d be spending my money on this SH but when you become desperate enough, you’ll do just about anything and I’m at the point of doing anything to make the pain stop

Post Edited (Jnameless) : 5/14/2023 7:04:36 AM (GMT-8)

Posted 5/14/2023 7:26 PM (GMT 0)
You need to keep seeing a Lyme doc and treat the infections

If you’re not getting anywhere with the doc you’re seeing - then switch to another one.
Where abouts do you live ?
Posted 5/28/2023 3:52 PM (GMT 0)
How were you all diagnosed?
My bartonella was through igenex
Does anyone have excruciating shin pain where they have to take pain meds and it’s still not enough. I wasn’t to go to the hospital everyday but they weren’t helpful
I also had feet X-rayed and nothing
The amount of pain on the tibia something has to come up
Posted 5/28/2023 4:42 PM (GMT 0)
pain in the shins is a common reported symptoms with bartonella

the exact cause is not known

but people with bartonella are well known to develop various pain syndromes - including neurologic conditions such as small fibre and even large fibre neuropathies - so it could be related to that

in which case it would not show up on xrays

bartonella can also infect the bone marrow and cause abnormal bone growth - but that would defo show up on x-ray

unfortunately - ER staff are not very well trained when it comes to chronic infections - have very little time to deal with each patient - and are mainly following strict protocols to make sure you are not about to die from something acute. so are not the best place for chronic complaints

bartonella and babesia together are often difficult to treat - especially when people have been ill for many years- i think you really need to find a suitably equipped LLMD (Lyme Literate MD ) to get treatment as these complex diseases are not understood or even recognised by most mainstream doctors - due to the schism in the medical community
Posted 5/28/2023 6:07 PM (GMT 0)
you may be a good candidate for bvt . it immediately stopped the debilitating bone pain for me . i too was bedridden and now have some sort of life . sorry for your many years of misdiagnosis ,steroids are now known to make lyme much much worse by disabling immune system.( they are great at describing whats going on in latin ) if you consider venom therapy can help reduce infection, inflammation and restart the immune system. there are threads here and fb groups if you would like more info .welcome and keep us posted
Posted 5/28/2023 9:34 PM (GMT 0)
Dr M, the bartonella guru, and at least one other LLMD are very big on treating hypercoagulation in their patients using Serrapeptase, Nattokinase, and Lumbrokinase. Those enzymes help break down fibrin deposits in the blood vessels caused by bartonella. It don’t think it would be a quick fix, but it could help with the shin and foot pain.

Is the pain in your feet and legs constant? What does it feel like?

When I was a child, I would wake in the night with aching pain in my knees and legs. My mom would put hot rags on my legs or sit me in a tub of very warm water. The doctor said it was growing pains. It wasn’t. I continued to have them until I was 40 and started seeing a chiropractor. For some reason it stopped then.

By the time I was in my teens, I just started taking Tylenol for the pain. By adulthood, I was taking an Extra Strength Tylenol every night before I went to bed. That usually prevented me from waking in the night with pain.

I guess it was in my teens, I started getting the pain in my forearms and elbows, too, and not just my knees and legs.

I never used opioids. Tylenol always worked for that particular pain. Now, I use Penetrex cream on my neck, hands, feet, and forearms, and even my face at night a lot. Especially if I have been doing yard work during day. It’s very relaxing and helps me sleep.
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