Topic: Has anyone treated Babesiosis with a negative blood test?
BackinStOlaf
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posted
I know that some have but I am about to go pick up my $1,000 rx for Mepron and I am nervous because I have a negative smear but I have ONE symptom. The Air Hunger.
LLMD says let's try Mepron but for that price out of pocket, it is nerve racking with no concrete proof
Thanks
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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posted
Unfortunately, a lot of people are forced to treat Babesia without a positive test. (I am one of them, although I can't comment too much as I've only been treating for a couple weeks so far.) There are about two dozen different strands, and testing for only two of them.
With the air hunger, it's a pretty good clue that Babesia is a culprit.
Good luck.
Posts: 340 | From san francisco, ca | Registered: Nov 2010
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lululymemom
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Yes, my daughter treated with mepron with a negative test. What I would do now, if I had known, is try her on Cryptolepis and Artemisinin and see if she had a response.
She did improve on Mepron, but is now treating with herbs.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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BackinStOlaf
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LULU: So you are saying that if the herbs hit something, that it most likely is Babesia then and then it would be a good time to start Mepron?
I told my LLMD how expensive the Mepron is for me and he never mentioned trying with herbs first.
I need to knock this out already, I have had air hunger for 3 months and I can't take it anymore :/
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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BackinStOlaf
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Also, does anyone have any idea how soon I could start feeling progress on the Mepron? Also, if my breathing gets worse as a HERX, how can I tell the difference between that and an allergic reaction?
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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lululymemom
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Yes, if you react to the herbs, you are most likely dealing with babesia...
Would it be possible for the pharmacy to give you a small amount to start with? This way if you are allergic, you won't go to the expense of purchasing a full bottle.
Either way, keep benadryl nearby and start out with a very small dose. An exacerbation of symptoms can happen. My daughter started feeling relief after a month of treatment..
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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17hens
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posted
I treated with no positive test. I only got better and better on Mepron (plus Zith & Bactrim). It was a wonderful combo for me.
I would get flares of symptoms every few days but they got less and less as time went on. These flares were never bad but my babesia had never been very bad/obvious anyway.
I took mepron for 5 months, and the only time I remember feeling bad was at the 3rd week (felt fluish - tired) and one weekend (fri - sun) about 3 months into treatment I had major symptoms flare. IN hindsight, I think at that point it would have helped to start Artemisinin.
Other than that it was a great experience.
I did start treating for parasites during that time and I believe that helped too.
And I should say that I stopped mepron at 5 months because my husband lost his job and we couldn't afford out of pocket.
I am treating now with GSE and it seems to be keeping it under control. Time will tell.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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17hens
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posted
I just remembered what I wanted to tell you.
I had very mild symptoms of Babesia, so mild I wasn't sure it was a player. I also had a negative coinfections test from MDL (no kidding).
But two things happened that proved to me it WAS a player -
1st - after 8 months of treating Bart, I could only get to a certain level of health, but never past that level
2nd - I started a symptom diary and noticed a 5-6 day cycle.
Babesia!! It was the missing link for me.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Yes, I do in fact the majority of Babesiosis tests are negative.
Have you ever tried getting the Mepron for free. That's how I get it right from Pfizer delivered to my home.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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BackinStOlaf
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posted
how can you get it for free? as far as I know, GlaxoSmithKline makes it
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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17hens
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Member # 23747
posted
bigstan, tell us how you get it for free! PLEASE!!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I'm sure if you go on the Pfizer website there is information about how to qualify for free Mepron.
Most drug companies offer programs such as this and I'm sure BigStan will come back and give you more info.
Also, I was treated for Babesia without a positive test. It's not uncommon at all and especially if you have air hunger.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
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mojo
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I've been treating Lyme & Co for five years - all the while thinking I didn't have Babs. Absoultely NO sypmtoms!
I began rifing for it last summer (just to cover all of the bases) and WHAM super herx! And now I have that all day foot pain that some folks here say is a classic Babs symptom.
With you air hunger I feel strongly that you have Babs.
Let us know how you do with Mepron.
Posts: 1761 | From USA | Registered: May 2006
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The Bridges to Access is the patient assistance program for free drugs, such as: Malarone and Mepron.
You have to qualify on income. This program needs the first page of your last year's 1040. Line 22 is what they are looking for on your 1040. If you are still working pay stubs will suffice if you don't have a 1040 handy. If you did not file a 1040, there is other paperwork you can supply.
They will also need a script from your doctor. Your doctor should figure out the maximum dosage you will be taking for length of the script.
If you qualify on income send the application in by mail yourself, this way you are in direct contact with the program.
You can use an advocate, which is a company that will handle the paperwork but it will cost for the advocate. Usually it is a small monthly amount. However, you will still have to supply the paperwork so why spend money on a advocate.
Your application will be processed by Bridges and they will ship a supply of meds directly to you if you applied yourself. From the day they receive your application, it takes about 10-14 days to receive your meds, if you are approved and no questions on the script.
If you pefer you can use an advocate company (found on internet) they will handle paperwork for you and you can pick up at your pharmacy. Personally, it is easier to send the application and have the doctor fax the script to them.
Call them with questions, they are really helpful.
My adult son is on this program because he is only working part time. I believe his doctor send a six month script then had to send another to finish the year. Once you are approved you are good for a year. The doctor will have to send another script once your script runs out. If you need meds the next year, you would have to re-apply.
If you live in the 48 states or D.C. maximum monthly gross income allowed per household: 1 person - $2,268.75 2 person - $3,064.58 3 person - $3,860.42 4 person - $4,656.25
For each additional person add: $795.83 If you live in Alaska or Hawaii the monthly allowence is higher.
FYI, all three in my family were negative on Babesia tests. All of is treated for it and it is eliminating the symptoms.
In my case, the air hunger was so bad and got worse with Malarone but now I have no air hunger at all. Other family members are still treating. My son is treating with Mepron.
We all took Dr. Z's Art-2 (artmesia)with Malarone and/or Mepron. We needed to take the herb with it and it worked for me and is working for other family members.
My personal opinion is that if you live in the USA and have Lyme you have Babesia. Also, I feel that Dr Z's herb was necessary for my recovery.
PM me if you have any questions.
Elaine
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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posted
Mojo, Foot pain is a symptom of Bartonella.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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mojo
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quote:Originally posted by Elaine G: Mojo, Foot pain is a symptom of Bartonella.
Yes, but recent threads here on Lymenet (this week) stated that the Bart foot pain lasts only about 20 minutes or so first thing in the a.m. and if it lasts longer than that it's Babs.
Mine lasts all day and I only got it after rifing for Babs.
Posts: 1761 | From USA | Registered: May 2006
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mojo
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My foot pain was in the mornings upon waking up.
It was gone in about a month with treatment.
Anything is possible with Lyme and co-infections.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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mojo
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quote:Originally posted by Elaine G: My foot pain was in the mornings upon waking up.
It was gone in about a month with treatment.
Anything is possible with Lyme and co-infections.
You got that right! I've definately learned to "never say never".
glad your foot pain went away. In five years of treatment I'm just getting mine (few months now).
Posts: 1761 | From USA | Registered: May 2006
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t9im
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posted
My daughter is being treated for Babs and has been negative via IGeneX 3 times as well as Quest, etc. before.
She had the sleep anxiety, night sweats, fevers, air hunger, head aches and bone pain (including but not just the foot). Started on Mepron and Zithromax mid May of last year.
The first two months were difficult as we did not see any improvement but after that we slowly started to see some gains. LLMD noticed more at our 4 and 8 month visits. We have now completed 10 months, not sure if we've completely beaten it.
Cost, we signed up for a plan at Wallgreen's and pay $780ish / month for the mepron. Zith is 60+ every 10 days.
I've read Cosco is cheaper but we don't have one near us.
LLMD indicated in his experience it's a minimun of 8 months (when Lyme is present) to erridacate the babesia. He treats for 2 months after the symptoms are gone.
MD doesn't think the foot pain is Bart, as we have not seen any other Bart symptoms (so far).
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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beths
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I the lyme conference 2010, Ann Corsen mentioned all day foot pain can be babs.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
I test negative for Babs, but have the Air Hunger. I have taken Zhang Artemisia (order at www.hepapro.com) for 2 months, and believe that it has helped - many less episodes where I feel that I cannot get a good breath. (I understand that Artemisia works by preventing infection of new red blood cells, so you improve as the old cells die and your body makes new ones). It's about $100/month, and seems to have no side effects (not even stomach upset and I take it on an empty stomach as recommended by Dr. Zhang).
I would think it would be worth a try of this before going down the $1000 Mepron route. If it helps, great -- and you'll have a good idea of whether it's Babs.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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I treated Babesia for 12 months, what a difference!
I had drenching sweats! that was my big symptom.
My clothes and underwear would be soaked. I had to completely shower and change often in one day.
Now, I barely break a sweat at all.
I still feel very sick because I have Lyme.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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merrygirl
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I did treat for while without a positive test. maybe 10 months. But I didnt have to pay out of pocket that much.
last year I took a-bab and i was doing extremely well. I dont know if that is an option for you but it was "only" $100 or so for a bottle and I want to say that lasted 3 months.
I dont even believe in herbals at all, but this really did something for me.
Posts: 3905 | From USA | Registered: May 2007
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posted
i tested negative for babs and after starting lyme treatment, bam: Air Hunger and Fevers. No night sweats though.
Bart sx of mine. Foot pain in the morning stepping out of bed for about 10 mins.
I am treating with A-Bab (taking a short break to address parasites with other herbals). I can't say I'm feeling better after a month and half of it, but that's to be expected I guess. Usually you flare for a while before you get better?
posted
I have been pulsing Mepron for a week, along with Rifampin and Biaxin. I have not had any reactions. no herxing, no different than I was a week ago. Maybe this isn't the right drug for me.
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lymeboy
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Sorry, I forgot to mention that I have not tested positive for Babesia yet...
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nefferdun
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Watching Dr. B discussin babesia right now - on DVD
Babesia, like lyme, does not have reliable blood test results because it suppresses the immune system. Clinical diagnosis include Marked night sweats which may cycle every several days. air hunger, cough severe persistent headaches - like your hat is too tight, or behind eyes, sensitive to light off balance, tipsy feeling unrelenting fatigue
For resistant cases add sulfur (bactrim DS) or flagyl
Some people that fail with Mepron/Malarone do better on Coartem
Coartem is 3 days and cheaper.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I tested negative for babs (igenex). I had all of the classic symptoms for a clinical diagnosis.Treated with herbs with good results,all symptoms have resolved.
Posts: 342 | From northern california | Registered: Dec 2010
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Jamers
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Member # 28016
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Lymeboy- Many can take 3 weeks until they herx. Thats when Mepron is highest in your system. I was on it for 3 weeks then stopped and WHAM got a really bad herx and all my symptoms came forward. Before this, nothing.
Norcal-What herbs did you treat with please?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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lymeboy
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posted
Thanks for the info. I am pulsing, so perhaps that will take longer?
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