Topic: Struggling with Babesia or migraine like symptoms, help?
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
For over 2.5 wks I've been struggling with some debilitating symptoms: overall fluey feeling, head and neck pain and pressure, nausea, vertigo, sensitivity to light and sound and movement. I've also had more fatigue, back pain, chills, and night sweats.
I can't sit up for more than a few minutes at a time because the symptoms get worse. I feel a little better when i lay down and close my eyes.
I'm struggling to eat, drink, and take my medicines because of these symptoms. Zofran helps some but it wears off quickly and my insurance only covers a few per month.
None of these symptoms are new. I've been struggling with these off and one for the whole 6.5 years I've been sick. They usually don't stay so bad for so long.
Do you think it's possible I'm dealing with a Babesia flare? I had not been treating it aggressively for awhile and recently (14 days ago) changed my medications to target it better.
What do you all think is going on? Any suggestions for symptom relief?
I feel like a prisoner in my own body.
Posts: 5237 | From here | Registered: Nov 2007
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posted
Your symptoms could be Bart or babs, or a mixture of both. Sry 4 short answer, typing from mobile phone
Posts: 371 | From velocity of light | Registered: Sep 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
It sounds to me like babesia is "in there" although it could be a combination of things. When I started treating it I got a lot worse. Took a month to get over the hump.
My overall lyme symptoms would wax and wane. I usually felt much better in Spring/ summer. But when the babesia came on full force, it has been harder to get under control because I never addressed it before.
I don't know what to tell you but hang in there and fight it. Maybe ask your doctor for Mepron or Malarone. I hope you feel better soon.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Defintiely sounds like a babesia herx to me. Hubby is dealing with many of the same symptoms.
After the ER visit with the extrememly high fever he was off babs meds for 10 days except for continuing the IV clindamycin. We were going to resume some other meds but 2 nights ago in the hotel on the way back from his LLMD appointment he ran a mild fever (100.5) for several hours and the next morning his PICC line had blood in it and I couldn't flush it.
He had the PICC changed today -- the technician thinks the valve in the line had malfunctioned due to age -- the line had been in place for over a year.
He started back on malarone and quinine at noon today and is complaining of a stiff neck and some numbness and tingling. The flu like symptoms have never really gone away since the high fever.
Hubby can't tolerate zofran. His PCP switched his IV phenergan to oral which hubby is not at all happy about.
I found some IV vitamin C I had forgotten about in the frig and did a couple of IV's before we went to the LLMD appointment. It did seem to help some with hubby's nervous system symptoms. I could not get a scrip for IV glutathione as his former LLMD has totally quit writing any IV prescriptions for patients due to liability concerns. Still working on getting that from another source.
I think the dandelion root capsules and sarsaparilla and some of the other herbs I have been giving hubby are helping some. His nervous system is slowly calming down but the energy levels are way below normal. I think that will take much longer to recover.
Butterbur seems to help hubby with headaches. I get the NSI (generic brand from VitaCost). He takes 1 capsule 3 times per day and extra if needed. I also have him on gingko and vinpocetine as well. Plus he takes lumbrokinase, wobenzyme and papain enzymes.
We added in all these things 1 at a time and do think they help. We adjust doses based on symptoms and stop taking the different supplements from time to time to see if they still seem to be helpful.
These herbal and nutritional supplements seem more helpful to hubby than all the meds they tried in the hospital -- the zofran, vicodin, benadryl, zanaflex and topamax.
If you can tolerate it then benadryl might be helpful -- the antihistamine part of the drug can help your body better tolerate the die off from babesia. Or the med vistaril might work as an antihistamine. Hubby's doc no longer sells quercetin, so I am looking for another source of that supplement.
Good luck and hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I can relate to EVERY symptom you described to a tee. They destroy my life daily. I'm positive for WA-1 as you probably know. it's so tough to live with and nothing helps it. I'm sorry you're struggling so much.
Can you comment on thr new medication protocol? How aggressive is it?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I'm taking Clindamycin, Zithromax, Mepron, Daraprim, and Plaquenil. Started the Zith and Mepron about 2wks ago. Doses are normal, not really aggressive.
The frequency and duration of this symptom set started increasing over the last month and has been continuous for the last 2.5-3wks. So maybe I was flaring and now I'm having a herx type reaction? That would be good because then I could know that I might start to feel better soon.
Bea, thank you for the supplement recommendations. I'll have to look to see if I have any of them in my closet. I do have Benadryl so I'm going to try that tonight.
Thank you Seek, Lymetoo, Nefferdun, and Daniel for the support and encouragement. I'm going to stick to it and pray for improvements.
Posts: 5237 | From here | Registered: Nov 2007
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Bea, can you tell me which herbs have helped relieve your husbands nausea? You mentioned that they are working better than Zofran. Thanks.
I'd also love to hear anyone else's thoughts and opinions on this.
Posts: 5237 | From here | Registered: Nov 2007
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Hubby has been dealing with nausea pretty much the entire 10 years he has been sick. Sometimes it is worse but it never really goes away.
He is very sensitive to elevations in bilirubin -- that will trigger dry heaves with him. So I give him lots of herbs to try to make sure the liver flushes.
As for actual nausea -- ginger tea helps some. 1 teaspoon of ground ginger in a cup of hot water. He usually drinks this at least once per day. Also peach leaf tincture -- I use 1 dropper as needed in warm water -- usually at least 2 times per day. A 4 ounce bottle will last several months. Available from
Something else that may sound strange and I really don't know why it works to stop dry heaves is potassium salt substitute -- I just add a little to an inch or so of water in a cup.
Right now hubby has had to go back on oral phenergan -- for him it works more to stop his tremors and dystonia than on actual nausea. But he only needs 12.5 mg -- a higher dose actually makes his symptoms worse.
Zofran works on serotonin and phenergan works on acetylcholine so that is why one works better than the other for some people.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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I'm sorry you're struggling so much.
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