Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I have been on babs treatment since Dec. 22, 2006.
First month of 1000mg of malarone, 500mg of zithromax, with diflucan 2 x a week.
Saw LLMD....He said very rarely do patients need a second round of tx. for babesia as malarone is such a good drug. If it didn't work completely by the end of the second month, he said it probably wasn't babesia.
Agreed to let me continue with the same regimen for another 30 days, and added bactrim 1600 mg a day and flagyl 250mg once a week.
Once the bactrim was added, my night sweats stopped. The air hunger has gotten better overall (about 50%). However, I am down to 12 days of this treatment left.
I had an Igenex fsh done, which was negative. Should note that I had just about every symptom of babs.
What do I do if I feel as if I am making progress albeit slowly on this regimen? I saw that Dr. B recommended 1500mg of malarone dailey for 21 days.
I am really concerned that I am still symptomatic for babs, and may not be able to get my LLMD to continue treating for it.
Any advice on how I should proceed. I count down the days and think "what if I am still not breathing well in 12 days?"
I am to go back on doxy, stay on bactrim and the flagyl.
I don't see him again till March 7. Any advice on what I might do?
This is really stressing me out. Can anyone tell me how long it took them to get rid of babs?
Should I just bite the bullet and wait a couple of months and then say my symptoms are returning?
Sorry this is so long, but this has been something I've been worried about for some time.
Any advice is appreciated. Thank you in advance.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Geneal
Unless you were just infected and started treatment Quickly there is No Way you have treated Babs completely --
Babs is perty much the hardest of the co infections to get rid of --
Some folks respond to meds Quickly some dont --
I am going to PM you--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Doctors, doctors, doctors. I can't believe we actually pay them money sometimes for such bad advice. I am still treating Babesia after 2 years. Two months is not long enough for most if any.
Posts: 293 | From healdsburg, ca , sonoma | Registered: Feb 2005
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My LLMD had Lyme.. I really do trust him, but this statement of "you should be cured" really scares me.
We, (my LLMD) and I are not sure when I contracted Lyme. We originally thought around July of last year, as that is when my joint pain started. We also found a tick-infected dog around same time.
However,I am beginning to think that I have had Lyme and co-infections much longer.
It is very hard to seperate fatique and possible other symptoms as following the loss of our house to Katrina, we lived outside for 34 days without electricity.
Things were in such a state of chaos, well....My husband and I maybe averaged 3-4 hours of sleep a night worrying about the situation and what was going to happen to our small children and ourselves.
I can honestly say that I haven't slept a full night of uninterrupted sleep since Aug. 29, 2005.
I remember having a bad case of ringworm from living outside. Or at least I thought it was ringworm.
We went to Tennessee as a church put us up in a house there. Was put on fluconazole and poof- ringworm disappeared.
Had several bouts of pink eye while in Tenn. Had the flu once.
Seemed like I ran a low-grade fever forever.
I told my mom yesterday that I believe I had this infection for a while, but due to all the turmoil in our lives, paid little to no attention to how I felt.
I had major neuro lyme symptoms in September. Couldn't walk, couldn't talk, swallowing difficulties, no memory, etc.
Not that this disease can't progress quickly, but holy cow!!!
Maybe my LLMD will be more receptive to continuing treatment if he thinks this infection is of a longer standing.
Thanks for the replies and advice. I know my LLMD's policy is that he will work with me and not give up as long as I don't.
I just pray that he is willing to entertain the thought of longer babs treatment.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Geneal
Is he a member of ILADS? Would he be willing to consult with another doctor who has been treating folks with these diseases for a long time.
Dr B. said babs treatment is a minimum of 4/5 months. This is one tough co-infection t o treat and I know someone who treated it consistently for 4 yearswith mepron and is now well.
Your body will tell you when you can attempt to stop medicines. My son got treatment 6 months after he removed his tick and was treated 5 months on mepron and then switched to malarone. His symptoms returned while on the malarone and he is back on mepron for atleast 5 more months.
I am speechless. I want to find words to comfort or take away the past year and there are none.
You will get good advice here.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Hi Geneal,
So sorry for all you have been through.
It took me atleast two years to get the Babesia symptoms under control, if I stopped for a couple of days, symptoms can right back.
Hang in there and I hope your doc will consider longer Babesia treatment.
Posts: 6641 | From Michigan | Registered: Jun 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I do believe my LLMD is an ILADs member as he said once that he hasn't posted on that site lately.
Do any of you know if malarone is stronger than mepron?
I believe my LLMD believes that malarone is the strongest anti-malarial drug except for quinine.
Thank you so much for your responses and support.
I forgot to mention that I have had frequent spasms of my diaphragm. This was going on in Tenn..
Researched this symptom here and saw that it was mostly related to babs, thus kind of confirming that I may have had this Lyme cocktail for quite some time.
Of course, my neighbor is positive for Lyme and my husband had a positive Elisa also.
I can only suppose that since we were all outside for those 34 days following Katrina, we were exposed/bitten.
Who knows? There were millions of love-bugs flying on us, over us, in our food....everywhere. I wouldn't have noticed anything else crawling on me.
Also have seen the strangest mosquitos in our area post Katrina.
Thanks again. I know my LLMD is a Christian man. I will pray for the right course through him.
Of course, I will be off malarone for about 14 days prior to my next visit.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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We lost our home to fire during hurricane Isabel. Pretty stressful times for the year and a half it took to get things back together. My situtation is far less dramatic than yours as we never slept under the stars, but
my lyme symptoms kicked in as soon as things started to settle down. Burrascano says a stressful event can trigger the symtpom meltdown and mine like yours happened quicky with major scary nuero
stuff happening within a few short months...headache confusion slurrrred speech etc. Lyme treatment got things under control, but I am now faced with WA1 treatment as not eveything resolved and the headaches and crickedy neck are back.
My llmd is targeting the places where infections hide...sinus, tonsils, etc. Then I start babs treatment w/ mepron/zith/art in about two weeks. My llmd says its typically rough and can take 6 months or more. Time will tell.
Keep the faith! Mike
Posts: 87 | From Yorktown VA USA | Registered: Jul 2005
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