CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Can anyone weigh in? Does it depend on the strain you have, how long infected, or is it just a given that it's gonna be bad?
I know the classic symptoms include sweats, headaches, nausea, and fatigue. What are the others?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My son is having no trouble whatsoever, but I hear kids do better than we adults do.
He is on Mepron, Zith, and Minocycline. The only things we have noted are that recently, about six weeks into it, he has had a few sleepathons.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
-------------------- Lyme, Babesia Microti, possible Bart. Posts: 173 | From A little south of sanity - PA | Registered: Jan 2009
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I've been on Mepron 1tsp BID, Biaxin XL 500mg QD, and Plaquenil 200mg BID since July. I was also on and Bicillin LA 1.2 twice weekly until mid Dec.
Had been sick for 4 years prior to diagnosis and start of treatment by LLMD.
Since I tested positive for multiple things (Lyme, Babesia, Mycoplasma, CPN) it is hard for me to know what symptoms go with what disease.
Symptoms that have improved with the above treatment were drenching night sweats, chills, heavy tiredness, L side chest pain, cough, shortness of breath.
About a week after I started the combo I remember having terrible dizziness and vertigo to the point where I couldn't get out of bed for a couple days. So I guess you would call that my first Herx. Not too bad considering what others have gone through.
Symptoms that have not improved with the above treatment are nausea, gastropraresis, abd pain. Symptoms that have gotten worse are neuro related, cognitive problems, peripheral neuropathy, balance issues, fatigue, and joint pain.
I also tried adding Septra DS to the mix in Oct. That wasn't too fun. Major increase in GI symptoms, nothing new just went from intermitant to constant. Lived on Zofran.
Dropped Septra and added Minocycline in Nov. GI went back to my "normal" fluctuating of symptoms.
Since adding Mino have had what looks like an increase in what I thought were my Babesia symptoms. All those symptoms that I listed above as being better are back. I don't know what to think about that.
Dr thinks that I might be flaring and getting ready to see improvements again. Now that i've typed it out looks like a back slide to me. Hmmm hope things get better soon.
Side note on herbals. I was also on Enula for a couple months in there too. No noticeable difference. And prior to treating with LLMD took Artemesia by advice of an ND in combination with other herbs for over a year.
That's just a quick overview of my treatment. Hope it helps.
Good luck CD57.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Oh, i'm really sorry. I didn't realize my post was so big! Did not mean to hijack your thread CD57. Just trying to share my experience. Sorry Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
My babesia treatment has been great--- it removed the babesia symptoms.
I'm on Mepron+Zithromax+Bactrim+Omnicef+Artemisinin.
Some symptoms that disappeared are: sore area on front L side ribs, and "lyme arthritis" in thumbs and hands.
So those symptoms above that i had attributed to lyme, seem to be babesia or Fry-Labs-mystery-bug.
The hand arthritis had also responded to essential oils rubbed on the skin--- so either Babesia responds to the essential oils rubbed on skin, or Fry-Labs-mystery-bug rsponds to the essential oils ; or, if Babesia is known NOT to respond to essential oils, then the arthritis was caused by Fry-Labs-mystery-bug ; or else, if it was indeed lyme, then the lyme is responding to my drug combo ; but other babesia symptoms disappeared too, such as faint-night-sweats-on-back-of-neck, dark urine, falling asleep at noon, and minor muscle wasting.
So if in fact my thumb arthritis was caused by Babesia, then that's significant, because i didn't know Babesia causes thumb/hand arthritis, and i didn't know babesia responds to Farah-type essential oils on skin!
---from Pamois.
[ 06. January 2009, 06:44 AM: Message edited by: pamoisondelune ]
Posts: 1226 | From USA | Registered: May 2007
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My Babesia treatment has not been bad at all. Just one Malarone a day and I started feeling better in about 2 weeks. Main symptom to improve was severe fatigue.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
This is a tough answer. The first time I treated for babesiosis, my LLMD had me on Zith, Mepron and art.
The treatment didn't stand out as being any worse than bart or lyme treatment and I figured I was getting off easy after hearing so many nightmare stories.
I really thought I was getting better and even took a vacation out of the country for three weeks. All still was good, but that summer, even though I was still on lyme treatment, I fell hard, mostly neuro type symptoms.
Was sent to another LLMD who now has me on babs treatment again. This time IV Zith, mepron and art and I'm going through the roof.
This isn't like last time even remotely. I really don't know what the major difference was, other than I'm on IV this time, but wow...something has kicked my tail.
Good luck to you and be strong.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
the standard meprone/zithro combo seemed to clear babesia symptoms over the three months i was on it, but i switched course due to what seemed like advancing Bb symptoms. (like i know the symptoms for sure.)
after a week or two off the m/z combo, the terrible insomnia lifted so i associate the horrible sleep interuptions from that time with the the m/z combo. i think i was mean too.
bbut the combo did not make me sick...
-------------------- enjoy the day.
-jmb Posts: 208 | From Maryland | Registered: Dec 2008
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I felt better immediately upon starting babs treatment (from about 15% I shot up to about 25% of normal). I had my first herx 24 days into treatment. The herxes were brutal, but I saw improvement after each one.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
What do herxes feel like, and how long do they last? How long between each one?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
I also felt better immediately starting Babs treatment, then had a herx starting around 2 and a half weeks after, that lasted a couple of weeks. Then felt better again for two-ish weeks, then another herx... Since then, I can't tell where I am in Babs treatment. Kind of feels as if I hit a plateau and back to feeling crappy and so-so most days, but that's probably my fault because I stopped all abx during the holidays.
So now I'm trying to get back into the swing of things and taking all my abx and supplements/vitamins again. Blah.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
| IP: Logged |
posted
For me, my first Babs herx hit me around 2 1/2 - 3 weeks into the Mepron. I had an increase in fevers, night sweats, and I felt very shaky and jittery. My anxiety also went through the roof and my tachycardia and palpations increased.
My herxes seem to hit about every 3 weeks but after they pass, I feel pretty good.
I have noticed some slight improvement and I am not as tired as I was before starting treatment. I still have the night sweats, etc 3 months into treatment. I think I need to add Bactrim and Artemisinin soon.
-------------------- Lyme, Babesia Microti, possible Bart. Posts: 173 | From A little south of sanity - PA | Registered: Jan 2009
| IP: Logged |
Rianna
Frequent Contributor (1K+ posts)
Member # 11038
posted
Babesia Herx's are very tough but necessary.
The one thing you MUST never do is stop babs treatment until it is totally gone. Also it seems to become resistant to a med after a couple of months so you often have to change or add in a new med.
For me initially I felt good on Malarone for 3 weeks and then terrible, it got too bad and my doc switched me to Clind/quinine and that gave me a physical herx for weeks, I could not get out of bed - then my mobility came back far better after every herx.
After adding Artemisinin that was hell on earth but I go through it, I remain on Clin/quine and pulsed art.
My mobility is the best its been since the start of treatment although my babesia is still very much there but it seems different now, not so deep - i assume I am therefore beating it slowly but again you have to seem to keep on top of it as it comes back very quickly if you dont get the upper hand.
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Rianna you have been through SO much! And lived to tell.
I am actually scared to start babesia treatment althogh LLMD says it won't be too bad. I have a part time job offer and want to take it. How many people can work thru these symptoms? The work will not be stressful.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
I just got the word yesterday that I have babesia too and will start treatment with zith and plaquenil on Thursday.
I am nervous about herxing too. I have a full time job and I am afraid that I won't be able to stick with it. I am an elementary school teacher. I only have 8 and a half sick days left for the year...
Someone tell us it's not that bad.
Ali
-------------------- Atticus Posts: 11 | From Summit | Registered: Oct 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
![[Razz]](tongue.gif)
Printer-friendly view of this topic