I haven't started any posts for the last few months. I have changed LLMDs, gone on IV and have seen little to no improvement. My brain is getting worse by the day.
I do have a question for you all though...
I did the extensive babesia testing through IGenex. My results were all negative. Has anyone had negative test results, treated babs and improved?
I am very discouraged and finding it difficult to continue on.
Thanks!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
No...'never treated parasites. Neither one of my LLMDs has mentioned it...
I have only treated lyme the entire 7 months on meds...except for one lone month of rifampin for bart.
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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posted
Tested negative for babesia and bartonella on western blot and Fish test by IGENEX.
Azithromycin and malarone helped me the most in my treatment.
Lyme opens the dor for germs in our body hell knows who plays the major rol after that in us to be so sick .
Posts: 482 | From Nebraska | Registered: Feb 2010
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Tested negative. Had big improvements with brain problems with Babesia meds. Unfortunately, symptoms returned when I stopped the meds.
Posts: 2232 | From USA | Registered: Aug 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Have you been on the IV for about a month now?
If so, perhaps you are herxing and that is why you are feeling worse and discouraged or depressed.
It is always good to look at the calendar and make the 28 day calculation when you begin to feel worse.
Let us know, OK?
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I was on 5 months of orals with no improvement. I have been on IV for two months now. I have never really herxed and am keeping a symptom log. No rhyme or reason to it...mostly just bad brain days, major twitching, heart palps and other stuff.
I have only really treated the lyme, with only a lone month of oral rifampin about 4 months ago. Perhaps co-infections are my problem...
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
The three of are treating babesia with artemesia 10 days a month. It makes us really herx so we must have it. We too were negative through IGeneX for babesia but our doctor did the EOS lab test which is eosinophilic cation protein. All of us are elevated which he says is an indicator of babesia. Can't remember why though. I know of a friend whose son went up on the dosage of rocephin. Is this a possibility? Wishing you well!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
We are literally in the same exact boat Tri. I believe we both need babesia treatment, I'm hoping to start some soon.
Posts: 306 | From NY | Registered: Sep 2010
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Tested negative through Igenex, but positive through Fry Labs. It took a year of meds to clear, and now I'm having a relapse. All my cognitive symptoms disappeared during Babs treatment. They have not returned, and my current relapse is mild.
My husband tested negative through both Igenex and Fry, but has obvious symptoms. He herxes on Babs meds.
The odds of having just Lyme are incredibly remote. The three Bs (Borrelia, Bartonella, Babesia) travel together.
blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
boxermon-what did you take that cleared your babs originally? Have you tried lariam or riamet?
Posts: 1104 | From N.California | Registered: Jan 2008
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I was on various Mepron combinations for a full year. I never took Lariam or Riamet.
Mostly Mepron, Malarone, Bactrim DS, Zith, Plaquenil, Alinia (not all at once!). Artemisinin. Lots of Mino for Lyme and rounds of Tindamax and Flagyl for cysts.
At one year, my symptoms changed completely. That's how we knew Babs was done. I then treated Lyme and Bart for 18 months.
My current Babs relapse is very mild, just a few symptoms for a few days each week. But I want to get on top of it!
i got sick in 7/2008... after 6 mos of searching whats goin on, i figured out that i have lyme... since april 2009 im in constant abx treatment.. combinations.
since ~2months im on mepron+biaxin+arte+pulsed flagyl.. i herxed for 1 full month! never herxed so long.
well.. i improved on borrelia treatment.. but not as much as i hoped.. so i startet to treat bartonella with combos like: levaquin+bactrim ds+mino+flagyl... for 6-7 months. after that i felt better, but my brain still didnt work like it should.
i thought my brain problems are caused due bartonella or BLO.. but like i said.. i dont improved that much on barts meds (test pos)...
5 weeks ago i had to take a break from mepron... on day 3 ABxFREE.. i felt so good like i never felt in 2 years beeing sick.
babs treatment is really moving something, especially in my head. the biaxin and mepron is hard to tolerate.. but i think its worth it. look @boxer mom etc... they got rid off their brain stuff with babs treatment.. i think it will work for me too because i already had 14-15 months ABX for borrelia and bartonella/blo
greetz
ps: im glad to read your post BoxerMom... im hoping that i get rid off my brain stuff too with babs treatment
Posts: 371 | From velocity of light | Registered: Sep 2009
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it took me 4 or 5 months on the picc line until i noticed a difference... esp if you've had lyme & friends for a while, it might take a little time....
i was skeptical, but after that 4th or 5th month, i noticed something happening... give it some more time before you throw your hands up.
. i know it doesnt make the situation any less frustrating... i hope it gives you a little hope at least.....
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
For lyme my daughter's brain didn't start to improve (we have a long way to go) until about 8 weeks into the tindamax.
For babesia, she was / is negative and her babs symptoms also started to improve after about 8 weeks (treated babs for 4 months before we started the tindamax for lyme).
Both times she became worse b/4 we started to see some improvements.
Good luck and don't give up. A negative babs test is common.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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