LymeNet Flash: Most common Babesia symptoms

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Posted by HiHopes (Member # 7286) on :

Hi,

I'd like to throw out this question because I'm so confused and have a need to know what's going on. What are your biggest Babesia symptoms? And how do you know what's being caused from what? The lines are so blurred between lyme and co-infections...

I'm being treated for lyme and babs now. Lyme treatment for almost two years and newly diagnosed babs in March. I had lyme about four years before diagnosis.

I've had all along very bad neck pain with horrible cracking and creaking. But since I've starte mepron, the pain is so intense and horrible. It goes up my neck to the base of my skull where it feels like a pressure cooker. Lower back pain, too.

I have no balance at all. Just stumble and fall everywhere. Muscles burn and ache all over. Eye pain, joint pain and cracking, numbness, tingling, rib pain, shoulder and collarbone pain, v-tach. atrial fibs and mvp.

I could go on and on, but will quit rambling. If you read this far, my question is what are the most common babesia symptoms?

Thanks for any help...

Posted by pab (Member # 904) on :

Thanks for posting this question.

Jake started IV antibiotics about 8 weeks ago. Since that time, he is extremely hot and sweaty but doesn't have a fever. He has had this symptom before but it had gone away. It's much worse now than it was before. He had an 8 day break between the two IV antibiotics and it didn't seem to make any difference.

We keep our air conditioning at 72 degrees all the time and he still needs a fan.

Jake's main symptoms are a severe, unrelenting headache, ear and eye pain, shoulder and neck pain.

Jake tested positive for Babesia by Western Blot in 2002. His LLMD says he has been treated for Babesia but I'm going to push for retreatment. Since he has been sick for so long, I think he needs more aggressive Babesia treatment.

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Posted by HiHopes (Member # 7286) on :

Pab,

I'm sorry your son is going through this. What was he on to treat his babesia? Unfortunately, being treated for it doesn't guarantee that it's cleared...

I would definitely have the babs revisited. I think it's been what's held my recovery back as well.

I have all the symptoms he has...

Maybe someone will come along who knows more....

Posted by valymemom (Member # 7076) on :

HiHopes,

What medicaton are you taking? Maybe see what others are taking and compare also.

That headache, shoulder, neck pain, I know must be terrible. I see my son suffer from the same/always.

Posted by janet thomas (Member # 7122) on :

I can only speak from my personal experience, I am not a doctor and this is not medical advice.

I had acute Babesia symptoms last fall. I had a daily cycle, same each day for 5 days. In the am temp was normal and I felt lousy but not too bad. Around 4 pm I would get the chills, shaking and shivering despite a down coat and a comforter. That would last 2 hrs or so and then I would start to get warm, way too warm.

Off came all the clothing , the fever went rapidly to 101.5 or so . I stood naked outside in the cold I was so warm (don't worry-no one could see me). Advil didn't touch the fever. Also, with the fever came a bad headache and nausea. Of course, I hurt all over. Went to the ER the first nite-what a waste. They ran an IFA for Lyme-it was negative.

On the fifth day I went back to the PCP and told him now I had new symptoms. He thought I had malaria. I have a history of travel to Amazonia. He prescribed doxy, 100 mg BID.

After the first dose the fever/chills stopped. Then a Western Blot was done, finally. CDC pos for Lyme. A month later a LLMD ran a Babesia microti titer-pos at MDL. I was treated with mepron/zithro.

Since then I have tested monthly at MDL by PCR and titer 3 months in a row. All neg. Also, just had Igenex run a full B. microti panel (PCP, FISH, IgG &IgM titer) -all neg.

Do I still have Babesia? I don't know. But if it comes back I have an alternative tx in mind.

Janet

Posted by HiHopes (Member # 7286) on :

I'm on Ketek, Mepron, Plaquenil and Amoxicillin (Amoxi for strep).

I don't know why my llmd prefers to do ketek instead of zithromax with mepron.

I get tested monthly and titers for babs have remained the same.

She said if they were still the same next visit (in 3 weeks now), she was going to change the mepron to clindamycin.

Janet, can I ask what your alternative tx is?

Posted by betsy (Member # 7105) on :

Hi HiHopes, I love your name by the way...if we didn't have hope where would we be??? I have ALL the symptoms you mentioned...two words in particular caught my attention...balance and burning! I as well have NO balance..absolutely none and fall all over the place and have had broken bones as a result! And the burning muscle and joint pain just makes you want to cry! And I have a big threshhold of pain but this I cannot bear! I have been treated for lyme and erhlichiosis since early Dec. with IV combo's and just haven't had but so much progress. Results were negative for babesia in Nov. but my guess listening to your symptoms is that the babesia is in there somewhere and perhaps explains the slow progress. Ironically, I just got the Bowen kit and will send it off Monday.
If you read Dr. Burrascano's description of babesia symptoms, I have to chuckle at the part that says the patient may experience a "vague" sense of imbalance. Mine is so severe, it appears as if I am drunk! And I even went through balance therapy for 6 weeks and improved with stability but none what so ever with mobility. I am on vancomycin and rocephin now...2 heavies and just so frustrated. I have also had zithromax, ketek and doxy along the way. Secondary symptoms such as ear ringing, TMJ spasms, quivering fatigue have cleared but not the biggies. I am curious with you...do you by chance have low blood pressure and low body temperature? I have both to great extremes. Will keep you posted with test results. We are very close with symptoms. One more of my bad ones is slurred speech...which is quite sad for me. Best of luck with your treatments. Betsy

Posted by janet thomas (Member # 7122) on :

Hi Hopes- I may pattern something after malaria tx, with my LLMDs go ahead , of course.

Posted by aliyalex (Member # 6976) on :

Well, I feel less alone here. Thanks for this post. I have been on zith/mepron/art for 5 weeks. I had a one night headache where i thought my head was exploding. My eyes were very painful.

My legs became very numb, left one burns and my balance is horrible. I started using this great HUGO walker from Sam's b/c I kept falling and broke my kneecap in half 2 months ago.

My neck hurts and I have crunchies in it. The most disturbing sx tho, is my whole body feels weaker, especially my legs.

Then there is the wave of depression/anxiety and 60 seconds later I have sweat dripping. Anybody have that? Thanks for listening. My husband is going to get tired of hearing it, I fear.

Posted by ICEiam (Member # 7519) on :

Daughter, Ashlee has just about the same symptoms exactly as Jake. Horrible pressure in her head, eyes and ears. She was on Mepron, Ketek and Injections of Rocephin (OUCH) she hasn't had one single good day since diagnosed in March. The pain got so bad Dr. H backed her off the Mepron and Rocephins and ordered an MRI. We are awaiting the results.

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ICEY

IDAHO LYME SUPPORT GROUP
[email protected]

Posted by surg (Member # 6937) on :

Biggest babesia symptoms-Autonomic nervous system problems-vision wavy, gi upset, nausea,difficulty swallowing, fevers, dizzy, weak, anxiety, depression, fatigue, brain fog, air hunger, heart palps, tingling in the hands and feet, and headache(metal plate behind the eyes). All somewhat better after 4 months of mepron and zith. The first month on mepron and zith I was very dizzy.

Posted by pattiecake (Member # 6424) on :

My daughter is on zithroman/mepron for babs. Her symptoms are severe migranes, neck pain (bad) cracking neck and limb joints, cold chills and then sweats, vertigo bad when she started the mepron. Fatigue. Now she runs a temp constantly aroung 99.5 and her herx is cycling. SOmetims it is very bad.

Dr. J took her off all meds for a week and it helped a lot. Gave her a much needed break.

pattiecake

Posted by HiHopes (Member # 7286) on :

Wow, Thanks for all of these great responses. I may not feel better, but I sure don't feel alone!!!

Betsy, I have ALL of the symptoms you talk about. Have you been tested for WA-1? That babs test is not routinely done. Most drs. think it's still just in the pacific northwest. Never been there and I live in VA!!

You are on two very potent abx's. Keep us posted with your results...

I'll be thinking about you...

Posted by HiHopes (Member # 7286) on :

Wow, Thanks for all of these great responses. I may not feel better, but I sure don't feel alone!!!

You are on two very potent abx's. Keep us posted with your results...

I'll be thinking about you...Hang in there!

Posted by HiHopes (Member # 7286) on :

Aliyalex,

You're definitely not alone. I have that horrible weakness in my legs and arms. I also feel like I have jello for muscles. It kind of just feels quivery. You can't see it looking at me, I guess it's just a feeling.

I am sitting here with sweat dripping off of me as I type this. Later, I will get chills and have to bundle up. I also get the anxiety. I start to think horrible thoughts and get so scared.

I, too, fear my husband will get tired of listening to me. He tries to be supportive, but this is always on my mind so out of my mouth...

I know we'll all get better. We just need time and the right treatment...

Posted by pab (Member # 904) on :

quote:
Originally posted by ICEiam:
Daughter, Ashlee has just about the same symptoms exactly as Jake. Horrible pressure in her head, eyes and ears. She was on Mepron, Ketek and Injections of Rocephin (OUCH) she hasn't had one single good day since diagnosed in March. The pain got so bad Dr. H backed her off the Mepron and Rocephins and ordered an MRI. We are awaiting the results.

Has Ashlee ever had a lumbar puncture? It's the one thing that has reduced my kids' headaches.

Jake & Jordan have had MRIs and they are always normal. Jordan has had 2 MRIs this year, his endocrinologist ordered one and his ENT ordered the other.

Both kids will be seeing a neurosurgeon in the next 2 weeks. We know Jordan's intracranial pressure is still high because he recently had a cerebral angiogram. We have a lot of hope that he can help with their headaches.

Does Ashlee take pain meds? Jake and Jordan take Tramadol/Tylenol and it usually takes the edge off. Nothing else seems to help.

How old is Ashlee? Jake is 19 and we had picked the name Ashley for a girl.

This is a good site about increased intracranial pressure:

http://www.fpnotebook.com/NEU28.htm

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[This message has been edited by pab (edited 14 July 2005).]

Posted by lymelady (Member # 6207) on :

Hi,
I see you are from NVa and I live in Fredericksburg. Possibly you could e-mail me your number and we could talk.

I got sick with lyme almost four years ago, bitten in 98. Primary symptoms were no balance at all, terrible lower back pain, turns out I have lyme of course and babs. AFter a course of mepron I herx with terrible neck pain, terrible vertigo and lower back pain so they seem to me to be the worse of it; although hot flashes with sudden sweating is part of it as well.

Recently finished a strenuous course of babs treatment and neck pain came back with a vengence and the original bite on my leg popped out.

All in all it seems to me you have classic babs symptoms; it is a misery for sure. Babs has made me sicker than lyme and kept be homebound for ages (terrible vertigo).

This board has been a Godsend to me and kept me sane through very rough patches (and you know who who are!!!).

Hope this helps
Lymeldy

Posted by betsy (Member # 7105) on :

HiHopes...Thanks for the tip on the WA-1 strain. Will make a note to Bowen. This was a very helpful thread...thanks for getting it going! I definitely think balance may be more a babesia thing than lyme or a combo. Hang in there! Betsy

Posted by LC (Member # 7070) on :

Is it too late to chime in? As you can see, I don't post much, but I like to read a lot of them to compare experiences. I too am confused about babs symptoms and wonder which are lyme and which are babs.I've been on Ketek/Mepron/Artemisinin for two months now and did not test positive on any Igenex tests a year ago. Three days after starting Babs tx I had a few soaking night sweats that I hadn't had for many months. Other symptoms that worsened right away were pressure in my neck and teeth, jaw tightness, fatigue, anxiety, neck & shoulder pain, ear ringing, neck cracking, arms and legs tired with radiating pains, occasional rib pain. I used to flush around 6:00 but that has stopped. After that first week I started to feel better. Since then it's been a roller coaster ride. It seems the lows are lower and the good days better than before. On the good days I notice that my body temp. is 98 or higher. When my body temp is in the 96-97 range that spells trouble. Babs treatment has helped to get my temp. up to normal on some days. Very rarely do I get low grade fever. I'm not dizzy, but my perception is off and it is difficult to focus on images going by while driving.
I've been treated for lyme for a year and hit a plateau, thus taking a stab at babs. I hope it works.
Lauren

Posted by HiHopes (Member # 7286) on :

Hi Lauren,

Your story is much like mine and many others it sounds. Your symptoms sure sound like babs to me.

I tried to do the Artemesia with my Ketek and mepron, but the combo was waaaay too much for me. My body couldn't take it...

Posted by LC (Member # 7070) on :

HIHopes- I wonder too if I may have WA-1. I camped in Washington, Oregon & N. California a few years back. And I've lived and/or travelled in every lyme hotspot in the country. Not to mention picking up a slew of bites from various critters while in Thailand. Who knows!