posted
I have been in treatment for Lyme for 3 years which was originally marginally treated when I got it 20 years ago. I started having horrendous symptoms and have been in treatment for 3 years. I tested positive for Bart and clinically for Babs.
Major symptoms were always twitching, dizziness, some muscle cramping and some other little weird Lyme symptoms. I was feeling really great after three 3 years. I was coming out of the dizziness and alot of other things had gotten better or were improved until.... 5 weeks ago.
LLMD put me on a heavy dose of Malarone along with Doxy and Factive. About 2 weeks into that protocol I started to have, and this is hard to truly describe, what felt like flu with the only "flu" symptoms being: feeling terrible with really bad muscles aches only in my upper back and stomach muscles and organs underneath, feeling like my whole body is poisoned, feeling hot alot of the time, having what feels like a mild fever and then a weird brain fog, which feels like a yeast fog at the end of the day. Not to mention I have had about 7 air hunger episodes in the last 5 weeks. And for a few weeks there I had blood blisters in my mouth. The flu syndrome seems to come for about 5 days to a week every two weeks and my dizziness is getting worse again. LLMD switched me from Malarone to Alinia, amoxy, Levaquin as we thought that Malarone may be causing some of that, but I have been off malarone for 3 weeks and all symptoms are the same.
I am scared and so frustrated. I would appreciate thoughts, info, stories...anything to let me know that this isn't freakish and that I will climb out of this. It just through me for a huge horrible loop as I really thought after all this time that I was getting better. Thank you
Posts: 298 | From los angeles | Registered: Mar 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
If those are Babesia symptoms, I'm on your train. You're describing my stuff to a tee when I take Babs medicines. Plaquenil does this and Clindamycin/Quinine really did. Every symptom is there. I'm sorry to hear you're still struggling after all that time. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Strange you should mention this. I am in very similar situation. Started Mino and Factive a few weeks ago and having terrible chest tightness almost daily and a general increase in feeling awfull.
Malarone has not fixed this either, I think I have been herxing like hell on Factive. Not a fan of it. I had my first day off it in five days today and I still feel like crap. I am edging towards more aggressive babs treatment too but I feel this could all be Bartonella.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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posted
Thanks for responding...do either of you know or have you heard about he cycle of Babs...meaning does it go away with first treatment and what is the herx cycle?
Posts: 298 | From los angeles | Registered: Mar 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Parasites and worms play a MAJOR part in Lyme disease. Check out the symptom list at
I didn't start getting well until I treated for these.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sounds like babs symptoms. Dr. S's book on babs mentions that babs may have toxins similar to lyme.
Many of our symptoms are related to the toxins and their ability to disrupt hormones and cause inflammation. I would assume since you've been off malarone that it isn't the malarone itself but more a build-up of toxins from die off. It may take your body some time to process the debri.
Are you doing anything for detox? Also, when bugs die they release heavy metals. Are you taking any heavy metal binders?
No, I am not taking any heavy metal binders. Do you have any suggestions? And what do you do to detox. Thanks so much. I am now starting the Alinia, Amoxy, Lev combo.
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
when I herx from babesia it takes me a long time to feel better. It may be the toxins in you that you can not detox out. I have this problem too. Babeisa herxes are twice as bad and last twice as long!
Posts: 323 | From Michigan | Registered: Sep 2006
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How long does your Babs herx typically last?
Posts: 298 | From los angeles | Registered: Mar 2006
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
In the beginning my babs herxes lasted at least a week. At least.
Some babs won't be eliminated without artemisia (Duncani needs art).
I still battle a little babesia, but my Lyme is in remission. I have to say, without the Lyme, the babs is so much easier to deal with. Even if your symptoms are primarily babs, as mine were, hit the Lyme hard, too.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
There is at least one member on here that says her babs flared every 7 days. And I have also heard every 2 weeks.
It must depend on the person, and maybe also the strain (species), which makes sense to me.
Yours does sound like either babs, or some other babesia-like organism that responds to babesia drugs.
You can try adding artemisinin in a pulsed fashion (4 days on, 3 off, repeat, in divided doses throughout day) and see if that helps. I am partial to it because I seem to really respond to it. I use it along with my anti-babs meds. Start slowly with it though!
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Thank you all so much for your responses. One question...and this may sound weird...but with all of this at the end of the day or when I wake up, my face and eyes are so puffy that it actually pushes my face down making my eyes droop. It comes on suddenly and lasts a few hours. Anyone have that kind of thing?
Posts: 298 | From los angeles | Registered: Mar 2006
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I have the eye drooping problem. I attribute it by the swelling and also a muscle related issue where it causes a eye ptosis-like symptom. I have very bad swelling in my face and legs for a long time.
I have Babesia Duncani yet have not started treatment.
Posts: 24 | From JAPAN | Registered: Apr 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My now famous lyme doctor told me that babs has a 1-week cycle and a 2-week cycle. I had babesiosis microti.
I experienced the 1-week cycle first. I got sick every Friday evening for 48 hours every week, as soon as we started treating my babs.
When I reported this to the doc, he added artimesinin to be taken starting Friday morning and ending when the sick time ended (the art is to encompass the sick time). This immediately reduced the sick time from 48 hours every week to 6 hours the first time I took it. Then, it got less and less.
Then, it went to the 2-week cycle and I just got sick every 2 weeks.
Burrascano says that artimesinin must be added to babs treatment in ALL cases.
I took art twice per day on an empty stomach for 3 days every week. You may need to take it for 1 week every 2 weeks in order to encompass your sick time. You keep this routine up even when the sick time shortens. I kept it up until I ended babs treatment, even though the sick time was gone for months.
To cleanse the body of the toxins, my doc had me drink lots of water and eat 4 lemons per day. He said lemons are a natural cleanser. I squeezed the lemon juice into the water and just drank that all day.
I think that will really cut down on the sick symptoms you are experiencing if they are from toxins. But the artimesinin was a very dramatic and welcome improvement to my sick time, no doubt about it.
I got rid of babs, lyme and bart. It has been 4 years now since I finished treatment and I am still symptom-free, enjoying my life.
Hope this advice helps you get rid of your symptoms quicker. They sound terrible. I know mine were. And, they all came on me once we started treating the babs.
I never had these problems until we started the babs treatment. That's what seems to indicate a toxin cause to me.
So, I think this is a good sign. I felt like I was going backwards too, when this first happened. And, it seemed so freakish I felt funny telling the doc, but I trusted him that he would take it seriously, and he did.
That's how I learned what was going on. So, honey, this is normal and means you are killing babs. Time to rejoice! But, I know you can't rejoice during that sick time. Mentally, it did a number on me every week. It made me feel doomed!
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF :Thank you SO SO SO much for your response. It eally helps to hear your story and will get on all of that right away. I really appreciate it!!!
Posts: 298 | From los angeles | Registered: Mar 2006
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
so the idea is to add artemesinin only when you are flaring?
Posts: 3528 | From US | Registered: Apr 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Well, Burrascano says to add it in every case during babs treatment.
One Burrascano type lyme doc I know treats babs for a number of months before adding the art.
My Burrascano type doc treated me without art until I noticed and reported the flare. (I had the flare for the first month of treatment and reported it to him at my next visit.)
So, I take from this that if the person reports a flare, you add art then to encompass the flare.
If the person doesn't report any flare, you add art anyway after a number of months of babs treatment. And you pulse it.
Evidently if you take art when flaring it really really hits the babs.
From my understanding, you always have to pulse art. So, since you will be pulsing it anyway, the best time to pulse it is during a flare, if the person has flares.
Posts: 9931 | From Maryland | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
sounds about right!
Posts: 3528 | From US | Registered: Apr 2007
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