HealingWell
Search Close Search
☰

LLMD thinks I have babesia?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/1/2015 9:09 PM (GMT 0)
Hi all,

I went to see my LLMD yesterday and he thinks my lyme is gone because I've been on antibiotics for 6 months. I got better and then worse again after the flu. Since we can't test for babesia in Australia, he's going off symptoms only. My current symptoms now are:

- sometimes it hurts to breathe (when I inhale or exhale) so for 10 minutes I have to take really shallow breaths

- crazy neck pain/ stiffness

-digestive problems (ibs)

- constant dull headache with brain fog but they turn into really nasty ones by afternoon. Feels connected to neck
(headache went away for a few months then came back)

- waking up at 4am with nausea (this ones been around since the beginning. Went away for a few months and now it's back)

- night sweats (went away but came back just last night)
- dry gritty eyes
- abdominal pain
- anxiety is still there but improving (my main symptom)
- tinnitus

I don't agree with him because I think I still have lyme due to the tinnitus. It hasn't improved at all. I'm not too sure what's going on..
He switched me from minocycline, azithromycin, tinidazole to azithromycin and plaquenil only and this is supposed to target babesia.

I also have mycoplasma and rickettsia but he didn't say anything about that and i forgot to ask.

What are your opinions on this?
Sorry that I keep asking so many questions but I get the most help from this forum :)

Hope you're all doing well

Post Edited (AriaBear) : 4/1/2015 3:14:03 PM (GMT-6)

Posted 4/1/2015 9:59 PM (GMT 0)
AriaBear,

Did he say he does not think you have Lyme or just that he is going to focus on hitting Babesia and then come back to Lyme later? If he says you don't have Lyme, I would probably disagree.

You have a number of symptoms, which could be caused by Lyme, such as crazy neck pain / stiffness, headaches, brainfog, ibs, tinnitus, ect.

It does sound like you could have Babesia from your symptoms, such as night seats, anxiety and breathing issues. I think it is a good idea to treat it.

You should ask him whether he thinks you have Lyme as well. It is possible that he thinks you're stalled due to Babesia and wants to focus on it. I don't know. But, there is a very big difference between focusing on Babs and thinking you don't have Lyme.

Has he discussed the possibility of Bartonella? Some of your symptoms make me wonder if you might have it, such as abdominal pain, dry gritty eyes and anxiety.

Just my opinion. Try not to stress! Try to clarify what he meant. Good luck!!! And keep us posted.
Posted 4/1/2015 10:27 PM (GMT 0)
Tinnitus alone doesn't mean Lyme, it can be caused by a lot of thing s unrelated to Diseases.
Posted 4/1/2015 10:30 PM (GMT 0)
I would agree with Lymie Girl -that your symptoms seem to reflect that you likely have Lyme and Babesia.

Many times LLMD's in the US will come back to treat Lyme after a break to treat another infection that seems to push it's way to the front with it's symptoms getting more severe. If that's the case, then go with it.
Posted 4/2/2015 1:10 AM (GMT 0)
Hi, I wish I had something to contribute, but... would like to know if during your 6 months you "pulsed" antibiotics, or in other words stopped and started again. If so for how long did you stop? Also, how long do you think you have been sick? I'm impressed that in 6 months you said you started feeling better. sorry I'm still new and soaking up information myself for now, until maybe i can have more wisdom and help others.

basically I am encouraged that someone said they are getting better after 6 months. I look forward to that. I'm in first month of treatment on antibiotics.
Posted 4/2/2015 1:14 AM (GMT 0)
You'll be glad to here that I was 90% after 3 weeks of Doxycycline. Sadly it took to long to get my next round of antibiotics ( 6 weeks) so it came back.
Posted 4/2/2015 1:22 AM (GMT 0)
Yes, that is a success story overall BDL. so then are you getting better now (again) since you are back on the doxy? Were you chronic for years and years, or caught infection early? I've had it 18 years and just now figured out what it is.

Sorry not trying to hijack your thread AriaBear.
Posted 4/2/2015 1:37 AM (GMT 0)
yes I'm improving once more. But unlike you I only had Lyme for about 6 months prior. I'm also 17, and otherwise extremely healthy. Which helps alot. Having a strong immune system is why I had my success.
Posted 4/2/2015 10:16 AM (GMT 0)

Lymie Girl said...
AriaBear,

Did he say he does not think you have Lyme or just that he is going to focus on hitting Babesia and then come back to Lyme later? If he says you don't have Lyme, I would probably disagree.

You have a number of symptoms, which could be caused by Lyme, such as crazy neck pain / stiffness, headaches, brainfog, ibs, tinnitus, ect.

It does sound like you could have Babesia from your symptoms, such as night seats, anxiety and breathing issues. I think it is a good idea to treat it.

You should ask him whether he thinks you have Lyme as well. It is possible that he thinks you're stalled due to Babesia and wants to focus on it. I don't know. But, there is a very big difference between focusing on Babs and thinking you don't have Lyme.

Has he discussed the possibility of Bartonella? Some of your symptoms make me wonder if you might have it, such as abdominal pain, dry gritty eyes and anxiety.

Just my opinion. Try not to stress! Try to clarify what he meant. Good luck!!! And keep us posted.

Hi!! Thank you all for your reply. No he said I had Lyme even though it showed up as negative in the PCR test but my symptoms show that I do have it. He said that now he feels like he's been treating the Lyme for 6 months and he feels like that's adequate. But since I'm not feeling better with a few of my old symptoms coming back and new ones appearing, he suspects babesia so he's going to treat that only and see how I go. He said if the anxiety comes back, then I have to call him and he'll put me back on the Lyme treatment.

Thanks all! <3

BDL said...
Tinnitus alone doesn't mean Lyme, it can be caused by a lot of thing s unrelated to Diseases.

I think my tinnitus is directly related to my Lyme..because after a few days of my first symptoms (major panic attacks), the tinintus started and hasn't stopped since.

Traveler said...
I would agree with Lymie Girl -that your symptoms seem to reflect that you likely have Lyme and Babesia.

Many times LLMD's in the US will come back to treat Lyme after a break to treat another infection that seems to push it's way to the front with it's symptoms getting more severe. If that's the case, then go with it.

Ahh I see. I thought they treated everything at once.. I was worried when he took me off the Lyme treatment because I really want it gone!
Posted 4/2/2015 3:46 PM (GMT 0)
AriaBear,

You definitely could have Babesia, but I think you might also want to consider treating Bartonella.

Bart can cause the neck pain, anxiety, stomach issues, and if your breathing is painful, it may be from costocondritis, which can be caused by bart.

Also, doxy should wipe out the Rickettsia, but that can be very serious if not treated.

You will get better! Keep us posted!
Posted 4/2/2015 4:50 PM (GMT 0)
Hi BDL,
Sorry one more question, what is the dosage of Doxy that you are using, which has given you the success you've had overall? thanks again
Posted 4/2/2015 5:40 PM (GMT 0)
Just the standard 200mg a day. Now take note this would normally do nothing for most, I just happen to respond to it. I now am taking ceftin and Biaxin 1000mg of each per day.
Posted 4/3/2015 10:39 AM (GMT 0)

momoftres said...
AriaBear,

You definitely could have Babesia, but I think you might also want to consider treating Bartonella.

Bart can cause the neck pain, anxiety, stomach issues, and if your breathing is painful, it may be from costocondritis, which can be caused by bart.

Also, doxy should wipe out the Rickettsia, but that can be very serious if not treated.

You will get better! Keep us posted!

My doc said to me Babs and Bartonella wasn't able to be tested here so he must have considered it? But he probably thought my symptoms fit more into Babesia.. I'm not 100% sure. I want to ask him but I'm the patient and he's the doctor, and it feels like I'll be telling him how to do his job haha. With everything so far, he's been very informative and all the info he's given me has matched what i've read so this is why I'm still with him.

I was only on doxy for 1 month while waiting for my results to come back but he switched me to minocycline. Does that also help rickettsia? He really hasn't said much about mycoplasma and rickettsia so maybe he's not so worried and he'll treat it later? It's so hard to determine what I have because all the symptoms overlap. So far he's just told me he thinks my Lyme is gone so he's going to treat the infections causing my remaining symptoms.

Thanks for replying!

I'm just happy my anxiety is gone for now :)
Posted 4/3/2015 4:47 PM (GMT 0)
Good luck AriaBear,

I hope you get better soon! If you're symptoms don't resolve after his further treatment plan, be sure to communicate your remaining symptoms so he can tweak your treatment plan.

Hopefully, the Azythromycin will treat Bartonella if you have it, but different strains respond to different meds. I'm not saying you have Bart, but it is possible based on your symptoms. There are various meds for Bart.

I'm not sure about mino. I know that Doxy treats a number of co-infections. Maybe someone else can chime in on that.

Also, you can look into herbals to supplement your treatment if you think it is necessary - whether to treat Lyme or otherwise.

Good luck! Hang in there. I hope your doc continues to help you get better. It is a difficult position to be in. Just remember his job is to help you get better.
Posted 4/3/2015 5:12 PM (GMT 0)
I think mino covers everything Doxy would but with deeper penetration in the brain and what not.
✚ New Topic ✚ Reply