I saw my LLMD last week. I was really hoping for help and relief for my fatigue and overall crummy feeling. I have really been struggling with lack of energy, a physical depression, social withdrawal, intermittent & serious air hunger and gasping, ongoing breathlessness, and bloating. The only two Lyme specific symptoms I have left are occasional tingling in my left leg and residual rib soreness. Everything else seems to be Babesia, and I feel like cr@p!
He concluded my spleen was enlarged as it is busy killing Babesia parasites. He said I was retaining fluid, which explained a few things. He also gave me credit for sticking with the meds. He said what I am going through is common in treating Babesia, and it's tough. He said this is what I have to do but adjusted my meds a bit. He upped the Malarone dose, but said to split it to twice a day if I can. I have for the last couple days and there's definitely a lesser herx each time. Apparently I am lucky that my insurance is paying for the Alinia, my second abx. It is insanely expensive.
I got a whole pile of new supplements to try to see which ones help and which don't. One of them is the all time most expensive one so far. ($160 for 45 days worth. What is in this stuff, gold dust??) The first one I tried did seem to ease my breathing a bit and my fluid retention. He said there could be excess fluid in my lungs, although he didn't specifically hear any. He also said I should be feeling a whole lot better by May, which will be seven months into my Babs treatment. He is convinced, as am I, that I am dealing with biofilms thanks to my history of hide and seek symptoms.
I said this whole synergy between Lyme and Babesia is bizarre. He confirmed that and said it's like we ripped a big scab off a wound that now seems worse than a year ago. But it was there all along. I am obviously not the first person to have Babesia get worse as Lyme winds down.
I had to laugh when I read something from the IDSA acknowledging that Babesia is becoming more common, but saying that the odds of having two or more coinfections are highly unlikely. Hah! I've had two along with my supposedly very rare neuro Lyme. I guess I am a mythical patient and should start referring to myself as a unicorn. Doctors already uses the terms horses and zebras, so unicorn seems appropriate. ;)
Now I am fully expecting to approach the two years of treatment mark before I am done with all this. I just hope that by the time the Babs is gone the Lyme symptoms will also be gone.
Lyme s@#%s. I am no longer a Bambi lover. I think we need to do whatever it takes to drastically reduce the tick population.
We didn't know I had Babesia until 11 months into the Lyme treatment. Because I tested negative for Babs three times and didn't have a response to the top three anti-Babs herbals, we set the issue aside. But as most of my Lyme symptoms were fading out, my air hunger/breathlessness didn't go away as it should have if it was caused by Lyme.
It was when my doc told me to take two anti-Babs herbals at once in late Oct that I finally had a reaction. I started at full dose and I had noticeably worse breathing problems, headache, and increased fatigue the next day. It was a lot worse a week later when I started Malarone. The Babs herxing was worse and longer than any Lyme herxing I've had. Seems I have a pretty bad case of entrenched Babs.
It needs to be treated, and it doesn't have to wait until I am completely over Lyme. Stopping Amoxicillin now would allow the Lyme to regroup. My doc is confident that although I've had breathing issues for a while, the Babesia has been hiding out in biofilms.
I did read one IDSA page on Babesia describing the possibility of a Lyme patient coming back after abx treatment to report shortness of breath and other Babesia symptoms. Even they acknowledge that you might not see Babs symptoms until after Lyme is knocked down. It is just maddening to me that other coinfections can appear well down the road of treatment.
I read that the CDC isn't even funding any studies of Lyme with coinfections. Babesia and Bartonella are under different research groups than Lyme, although they're paying a bit more attention to Babesia these days. They don't even acknowledge that Bart is transmitted by ticks. They are decades away from any good scientific research into how these bugs interact and affect symptoms and presentation. All we have to go on is the experience (by trial and error) and observations of the LLMDs.
We desperately need better tests for all of them! This is a sorely neglected field of medicine.
Rico, I can relate. Remember when I was in the hospital? That was from Babs giving me anemia and fluid around the lungs, after I had 2 blood transfusions all my Babs symptoms went away. Knock wood.
For me the Bart's seems to be the hardest to get rid of. I have it very badly affecting neurological functions. The herb that I know works ( because I went off of them all my symptoms came back) is very expensive costing me $120 a month.
The Lyme seems to be the lesser of 3 evils. I also am now a Bambi hater, lol
I hope you get better soon.
Thanks, all! I really appreciate it! Other people don't always understand.
Mojogal - I remember your anemia, but I don't remember fluid in the lungs. That was news to me that Babesia could trigger that. I wonder if I've had fluid all along in my lung sac. (I just hit my two year anniversary of shortness of breath and air hunger at the end of January.) I have two homeopathic supplements to help. They seem to be working. I've had a lot less gasping in the last few days, although my fatigue is actually worse.
Did A-Bart work well for you? I took it in the summer when I had to go off all my abx. I didn't have any response, which was a good indicator that my Bart was indeed gone. I know two other people who had noticeable headache, fatigue, and brain fog reactions to taking A-Bart, which essentially means they still had Bart.
I never tried A- Bart but used Chinese herbs Art 2 from Dr Zhang. It helped the Babs just as his HH2 had a big effect on my Bart's. I am still using that. I know that since I ran out once and all my Bart's symptoms came back.
You may want to try Art 2. Schaller gives that to his patients too. Hepa Pro sells it online if your interested.
I had a really miserable week, starting last Monday. I had terrible brain fog, fatigue, malaise, and my abdomen bloated up, hurting all the way across, just under my ribs. My stomach really hurt and I couldn't eat much at all, but I still gained 2-3 pounds in 3 days. I actually had to take Vicodin on two days because I hurt so much.
I spoke with the ND on call at my doc's office and he said to stop 2 of my 3 antibiotics to give my stomach a rest. He said I probably have small bowel bacteria overgrowth. He also ordered a GI ultrasound to check my spleen, stomach, and liver. I'll have that on Monday. I was so miserable I stopped the 3rd med, too. I am convinced that a few days into the supplement that busts biofilms, my system just got overloaded with Babesia. I match the description of acute disease, usually seen in people who just got infected. I think my biofilm problem was worse than we thought.
Blood tests say I don't have anemia, just slightly elevated creatinine. White cell count is slightly low, but still within "normal." It's amazing how bad I can feel and blood tests don't really show anything. I did read one Dr. Schaller article that said that some forms of Babesia Duncani do not cause anemia. I'm guessing that's the version I have.
The good news is that 4 days after stopping meds, my system is finally settling down. Less bloating, less pain, improved overall function, but still uncomfortable and tired and feeling spacey. I am almost wishing I was anemic enough to justify a transfusion if that would get me close to wiping it out in one day. I certainly never expected to have a week this bad so far into treatment. *Sigh*
I can't remember if you are taking Mepron or Malarone but my hematologist blamed Malarone, more than the Babesia, for my anemia. Please keep a close watch on the blood work. When I landed in the hospital due to my Anemia it was 3 days after my blood had been checked and shown I was NOT anemic. That is how fast it went south.
After my transfusions I felt so much better, it was a miracle. Knock wood, my Babesia was gone that fast.
Thank you for the info. It is good to know that I could deteriorate quickly. I am on Malarone (4 pills/day) but I stopped about three days ago. I am going to resume 1 pill in a couple days, then slowly work back up again. At least I am feeling a bit better, and my stomach, spleen, and liver don't hurt as much as they did earlier.
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