Many of you know what I've been doing, but I'll make a quick summary. I'm currently on Full Cowden and babs meds (lariam, malarone, enula, artemisia).
I was functioning at about 98% (for a few months at 95-98%) .... my only remaining symptom was air hunger. I was started back on the Malarone which I had been off of for six weeks to combat the air hunger. I have been back on the Malarone for close to two months now.
When I started back on Malarone I felt worse, not better, which I thought was just a herx. That lasted two weeks.
Then I caught what I thought was the flu, since one of my kids also had it.
Then I had a good week last week and we went to Chicago for spring break and did a lot of walking. Right after that was Mom's weekend at my daughter's sorority. I felt as good as everyone else. I would say I was 100% that week.
Well, I got back and was so tired .... but so was my 19 year old daughter, so I thought nothing of it.
Now it's Friday, and I'm feeling fluish again after feeling tired all week. Sore throat, fatigue, confusion, air hunger. I've had GI symptoms for a month now, too. They were completely gone, as were my cognitive issues after Levaquin.
Do you think what we assumed was babs was really bart? Am I treating the wrong bug? With the GI symptoms and cognitive symptoms is it the bart that is back?
Or, is this the flu? Tired from overdoing it last week?
Or am I not on enough babs meds?
I plan on calling my LLMD, but since it's Friday I have to wait till Monday. My hubby is playing doctor and thinks I should start back on Levaquin now on my own then call my doctor Monday. I just want to wait till Monday (scared to have to tell him I started meds on my own).
What do you think?
Posted by seibertneurolyme (Member # 6416) on :
You must be one tough cookie to be able to take both Larium and Malarone at the same time.
Basically the rule with Babesia is to treat for a minimum of four months -- red blood cells have a 120 day life cycle.
Hubby is taking Levaquin for Bart and Alinia for Babs at the same time. This is the first time he has tried treating both of these infections together.
I would be nervous about adding another med to the ones you are taking. I would let the doc make the call.
Bea Seibert
Posted by sixgoofykids (Member # 11141) on :
Thank you for your reply. I've actually been treating babesia for 14 months already. I backed off meds to only lariam .... but prior to that had been taking Malarone. And before that I took Mepron/Biaxin.
I've also been on Levaquin, Tindamax, and Minocycline along with the Lariam and Malarone in the past. I guess I am pretty tough. LOL
Posted by steelbone (Member # 14014) on :
Goof
I can't give much advise. But I do know that you would tell most people to wait until they talk to an LLMB. SO I think you should do the same. Plus your LLMD is one of the best.
I sure hope you feel better this weekend. Who knows maybe it is some type of bug. Lets face it every time we feel crummy we blame it on the disease.
Hang in there Posted by sixgoofykids (Member # 11141) on :
Thanks Paul. You're right, LOL! I had my husband "ordering" me to take it, so I thought I'd get opinions. I know I need to talk to the LLMD first .... but I thought in the meantime I'd find out from all of you what your take is on it.
Posted by Geneal (Member # 10375) on :
I am struggling too. Guess that makes us almost twins.
I have the air hunger but new disturbing symptoms are emerging while treating babesia.
Cognitive issues, brain fog, dizziness, joint pain, etc.
I am (thinking) for me it is babesia and Lyme.
It is cycling about every 25-30 days with that time coinciding with my
Monthly mepron break and my monthly friend.
I do have some swollen glands, but no foot pain, shin pain or red, swollen eyes.
That is what is making me lean towards lyme and babesia.
Hope you feel better soon.
Hugs,
Geneal
Posted by savebabe (Member # 9847) on :
I treated babs symptoms for a long time, until my np conviced me to start bart meds and wouldn't you know it, many of the symptoms I thought were babs were actually bart.
Personally, I would wait until you got the ok from your llmd, I have the same doc and understand you concerns. Although, treating bart again sounds like a good plan for you, especially due to GI issues arising.
Feel better.
Posted by sixgoofykids (Member # 11141) on :
Geneal, I never got foot pain, swollen glands or red eyes either. Don't rule out bart because of that. I mainly had GI issues and cognitive issues that got better on bart treatment. Sorry to hear you're feeling bad, too.
Savebabe, thanks for your reply. I agree, with the GI issues, it must be bart. Plus, I read that bart can cause a flu like feeling with a sore throat. I've gotten that way to many times for it to truly be a flu. Also somewhat of an almost fever, LOL .... you know, the kind that lingers around 98.8-98.9?
I'm glad to know I'm not way off in thinking it might be bart. I hope he's open to treating it again.
Posted by valymemom (Member # 7076) on :
Sounds like bart for all the reasons you have explained.
Posted by Rianna (Member # 11038) on :
I discussed the same thing in detail with my LLMD and he said the following:-
When you treat bart and the worst of the symptoms go from bart and you think you have it under control and then you start treating babesia quite often the residue bart can break out of the bone marrow and present again so you have to finish the babs treatment and often restart levaquin to treat the residue bart.
He also said you can often keep cycling the 2 treatments as bart treatment can make babs come out and then babs treatment can make bart come out - so you keep going until both are killed.
Rianna
Posted by sixgoofykids (Member # 11141) on :
Thank you for the comments. I'm thinking more and more that this is the case. I'm hoping it's not as bad second time around!
I'm not feeling really bad, but the symptoms are creeping in again. I've been treating babs consistently from the beginning.
The thing that's odd to me is I'm not having any Lyme-specific symptoms .... not that I miss the Lyme symptoms, LOL.
Posted by CD57 (Member # 11749) on :
If its bart, why not consider pulsing the treatment? According to my LLMD once you have knocked bart down initially (which you did), it can hide out in places like the marrow and lining of the blood vessels, and then present again. Pulsing treatment can make it "come out" thinking the coast is clear, and then zap! you got it.
What are your GI symptoms?
Posted by jmo (Member # 13141) on :
I hope you feel better soon. I was treating babesia for 6 months and when most of my symptoms were gone my doctor changed my medicine to treat Lyme. Within 3 months I was back with all my symptoms and felt like I had before all my treatment began. Just a few days ago doctor put me back on malarone and bactrim (that was the combo I felt best on)... within taking one pill of the bactim I felt so much better. I have ALL the symptoms you described and it would seem like it is the babesia in my case. That was the only positive test in my case (I know that doesn't mean much) and it was very high. I guess it "could" be bart because bactrim works against both it's the only abx that seems to really help me feel better. But I guess what I'm trying to say is Bactrim DS covers both babs and bart and might help?
Posted by sixgoofykids (Member # 11141) on :
Tosho, at one point I was taking Levaquin and Malarone at the same time. I was taking only one Malarone per day, but I was also taking Lariam, Artemisia, Minocycline, Tindamax, and Plaquenil.
I have looked over that symptom list. I do have a lot of those symptoms, especially the ones that also look like babesia.
CD57, my GI symptoms are abdominal pain usually related to eating ... doesn't matter what I eat, if it's solid food, my stomach hurts. I often feel gassy. I also get diarrhea. At my worst I was living on smoothies and a fudge I make out of almond butter, coconut oil, etc. to take with Mepron/Malarone.
Pulsing is a good idea.
JMO, I was thinking it was babesia, so was my LLMD. But increasing my babs meds (I was never off them completely in 14 months) has shown no change at all in symptoms. That's why I'm thinking it must be bart. Bactrim is a good idea, but Levaquin worked such miracles for me that I'm hoping that's what I'll get again this time.
Thank you everyone for taking the time to respond. It's good to hear what you all think about it.
Posted by liz dobell (Member # 8078) on :
Hi SIX GOOFY,
i just wanted to add that i too have bart relapses every time i stop the levaquin.
how long have you been off levaquin for?
i've done 4 cycles of levaquin so far (min of 3 mths each time) & each time i stop it i feel i have bart under control, but only manage to be off levaquin for about 4-6weeks & then bart symptoms come back with rengence! but good news is the levaquin always works quickly for me & gets it under control within a week back on it.
i hope you manage to get back to feeling well again & near 100% - your recovery story has been so encouraging to me
Posted by savebabe (Member # 9847) on :
Hey Six,
I was on septra a long time to treat bart and it helped, but nothing was like levaquin.
I did a few rounds of bart, and then babs meds, and each time I rotated them I had better results.
Maybe the bart did come out of hiding, and a few weeks of repeating levaquin may actually help.
Feel better.
Posted by sixgoofykids (Member # 11141) on :
Liz, I guess I've done pretty well as I've been off Levaquin since last Nov/Dec. I took Rifampin after that until Jan. I have steadily gone downhill the past few weeks, and it's all bart symptoms ... every symptom I have previously went away on Levaquin.
Hopefully, I'll find like you did that I feel better in a week! Last time the initial herx was six weeks.
Thanks for the comments savebabe.
Posted by TerryK (Member # 8552) on :
Six, I don't have anything helpful to add, I just wanted to say how sorry I am that you are having to deal with this.
I've no doubt you'll be back to where you were in no time at all.
Terry
Posted by sixgoofykids (Member # 11141) on :
Thanks Terry. I'm not doing too badly ... it's just taken me a few weeks to figure out what's wrong. I'm hopeful I'll bounce back quickly .... I'm barely sick compared to before!
Posted by sixgoofykids (Member # 11141) on :
Just a quick update .... I have a phone consultation scheduled for tomorrow morning. Posted by steelbone (Member # 14014) on :
Great...Keep us updated Posted by sammy (Member # 13952) on :
I hope that you start feeling well again! I'll be praying for you, for the wisdom and knowledge of your doc, and that your phone consult will go well tomorrow too. Take care Six Posted by sixgoofykids (Member # 11141) on :
I just had my phone consult .... I'll be starting back on Levaquin, mino (just till I get back from FL, then I switch to doryx), and Prevacid. I'll be on this protocol for at least a month or two in addition to what I'm already on.
She said it sounds like Lyme and Bart .... still babs, too.
Thanks for all your support!
Posted by sixgoofykids (Member # 11141) on :
Thanks Mom.
As it ended up, I got back on Mino and Levaquin. The PA thinks it's both the Bart and Lyme. I herxed getting back on the meds and am starting to feel better.
Thank you for the input .... I'll keep that in mind in case this doesn't take care of it.
What is used to treat mycoplasma?
Posted by Rianna (Member # 11038) on :
Thats great news that you are feeling brighter already - Your well covered as one of the best meds for mycroplasma is Levaquin (especially IV) so your well covered - Double Bubble.
Keep getting better
Rianna
Posted by sixgoofykids (Member # 11141) on :
Thanks Rianna. I had a heck of a herx, and now I have an upper respiratory infection (don't know how that happened on all these abx, LOL), but even with the infection, I'm feeling better than I was.
Of course, I'm in Florida right now, so I'm bound to be feeling better.
Thanks for letting me know I'm covered.
Posted by stormton (Member # 14412) on :
You might want to try HH capsule from www.hepapro.com for bartonella. It could be a good way to mop up any remainder after you are done with levaquin/minocycline.
Dr S in Florida highly recommends the hh capsule for bart. He also recommended clove oil and cumanda as maintenance.
Does anyone know how you can get reply emails showing when someone replies to a post??????
Posted by CD57 (Member # 11749) on :
Also good for mycoplasma: 9 months minimum of doxy and Rifampin!
Posted by sixgoofykids (Member # 11141) on :
I'll look into the HH capsules. I've heard about them before.
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I'm hopeful I'll bounce back quickly .... I'm barely sick compared to before!
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