posted
Babesia Fish -- Positive Microti Serum Plasmid B Burgdorferi -- Positive IGM West Blot -- all neg except Band 41 (IND) IGG West Blot -- all neg except Bands 31, 39 (IND), 41+
All other tests negative.
My CD57 was >200. Doc said this was very good b/c it shows my immune system has not been depleted and thinks 3 mos treatment should be enough.
LLMD treating for Babesia with Mepron, Zith and Omnicef 2x daily. Also many supplements including Artemisinin. Taking whole food B and multi. Been on for a month so far.
LLMD is not 100% on Lyme but feels 100% on Babesia b/c of accuracy of FISH. I told her I never had fever, chills, sweats, and don't currently have headaches. And of course, no rash, ever.
I do have internal shakiness, finger trembling(more left than right), jitters, teeth chattering, tingling tongue, and excessive fatigue, exhaustion and apathy, as well as bad insomnia. I also gained a lot of weight (15 lbs) and She feels my babesia possibly was triggered after a heavy workout, when my symptoms all started.
I am trying to compare apples to apples from people who have gone through Babesia.
I have seen no improvement on meds at all. Some symptoms have worsened, like trembling. My movements are real jittery. I can pick up small items, I am just unsteady but its not outwardly noticeable. I also feel a bit wobbly but not severe yet. I get chest pains on and off around the sternum. I have some white bumps on the left tonsil I can feel when swallowing (not tonsil stones).
Can anyone provide insight into this? I have been battling these symptoms constantly for last 2 yrs and get more tired by the day.
Posts: 7 | From Union County, NJ | Registered: Dec 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
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Hi Legend:
My daughter has Lyme and Babesia and I've done a great deal of reading on both subjects. I'm not an expert in any sense, nor a doctor.
One of my take aways is these diseases are difficult to treat and have frequent false negatives in blood tests.
First it sounds like you have diseminated lyme which is at least in the central nervous system. This is just a judgement based upon the symptoms.
Your blood work indicates potential exposure to the Lyme Bacteria. 41 is definitive of a spirochete bacteria, it is not specific to lyme but is typically one of the first to show positive.
31 and 39 are highly lyme specific and I believe don't show up for over a year.
I agree on the Fish. The bad news here is the Babs can get worse and will take at least 8 months of treatment. My daughte is in month 9 of the mepron and zith.
I don't believe Babs produces a rash on infection. Lyme initially and Bart rashes can show up any time. [LLMD's have indicated up to 35% of patients don't recall a rash].
On symptoms worsening. Our daughter was initally on Mepron & Zith for 4 months and while this was helping the Babs it was letting the Lyme run free. Her LLMD added Tindamax in month 5. Her neuro symptoms worsened and didn't seem to improve until end of 7th or early in 8th month.
The Tindamax is a cyst buster going after the non cell wall form of Lyme. I assume when we meet with the LLMD in two weeks we either continue or add another drug.
The Babs has to be erridacated b/4 you can really go afte the lyme. I haven't read up on Omnicef.
I suggest you read Dr. B's Advanced Topics in Lyme Disease.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im
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Member # 25489
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My daugher's WB was and continues to be negative for both IgG and IgM and is also negative for Babesia. She has been diagnosed with both based upon symptoms.
Her IGeneX negative results included:
IgM bands 34+, 41 IND. (need at least two + bands for positive)
IgG bands 30+, 34 IND, 39 IND, 41++. (for IGeneX you need two of thier ** bands and unfortunately 30 is not one of them).
We have lost trust in doctors and would not have been convinced of Lyme if not for the WB "indicating" exposure to Lyme.
At one point my daughter had over 30 of the Lyme symptoms on Dr. B's Advanced Topics in Lyme and she has all the babesia symptoms.
Her brain fog which really started to kick in during the summer (I didn't really notice till mid Sept).
Also, if we had a positive test result we might be able to have our insurance cover some of the drug costs. With the positive Fish your mepron and zith should be covered.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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I have the same symptoms as you from babesia. Don't forget that it takes at least four months before you see imporvement, 4 months is what it takes for the blood cells to be processed byy the liver and renewed. so as long as you celles are infected, you will certainely feel just as bad if not worse.
Posts: 723 | From Montreal | Registered: Oct 2010
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I should also mention my anxiety is through the roof! Although there is no visible weakness, my tongue feels stiff depending upon the time of day and I am now developing these white lumps on one of my tonsils, causing me a bit of discomfort when swallowing.
I have read that people usually start to feel a positive difference with Babesia in a few weeks. But who knows if it's the lyme or Babesia causing symptoms?
Has this taken over everyone's life like mine? I can't seem to function normally due to fixation on all these CNS issues. Sometimes I think it's all in my head, other times not. It's like I am being toyed with emotionally at will.
Posts: 7 | From Union County, NJ | Registered: Dec 2010
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posted
hum, i guess if it was lyme your cd 57 would be less than 200 and the IgM results would not be better than the IgG... I think babs is responsible for teh tightness you feel, and you haven't been treating it long enough to judge. It all depends on when is your next blood cells apoptosis.
Posts: 723 | From Montreal | Registered: Oct 2010
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t9im
Frequent Contributor (1K+ posts)
Member # 25489
posted
Shahbah:
When we visited Dr. M he indicated the tick sampling in CT averaged 92% positive for LB. Tie this in with newer patients with 65% (DR. B) co infections it has to be rare to have Babesia and not Lyme.
Not saying legend has both but the odds seem to be in favor of both. Then look at the WB. At the least indicates exposure to a spirochete bacteria.
Then its NJ which is as bad as CT. My town Glastonbury has plenty of children seeing Dr. J or Dr. M.
-------------------- Tim Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010
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t9im, i am not saying that lyme is not there, or behind , i am just saying that the symptoms that are being expressed are way more from babs than from lyme. You have to go with what the body expresses and treat the most expressive infection. Then you treat the others.
Posts: 723 | From Montreal | Registered: Oct 2010
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TF
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Member # 14183
posted
legend, I never had fever, chills, or sweats either and I got a positive babesia FISH test from Igenex.
I didn't have any of the typical babs symptoms. Yet, when my doc started treating me for babs, I got this terrible flare for 2 days every week--always from Friday evening to Sunday evening (48 hours).
When I reported that to lyme doc, he had me add artemesinin on the flare days. (He said babs has a 7-day cycle. So, you may want to look out for that.) That really did the trick.
The way we knew I was done treating babs was when I no longer got any symptoms at all on the flare days. It took quite a few months.
I hope you are not taking the artemesinin every day. My understanding is that you must take breaks from it or it will become ineffective. I took it 3 days in a row every week, for example.
Just wanted to let you know of another person who never got the babesiosis night sweats and who felt worse when they began treating babs.
Hang in there.
I had lyme, babs, and bartonella. My main symptoms were extreme muscle weakness, total exhaustion, and false menopause. I also suffered with insomnia and numerous neurological symptoms. I had lots of anxiety.
In March, it will be 6 years since I completed my lyme treatment, and I am still symptom-free, enjoying my life.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thanks for the all the support, advice and info here.
I am taking a concoction of supplements along with the abx: Artemesinin 3 wks on, 1 wk off 2x daily NT Factor 2x daily Thymus Glandular 2x daily Omega 3 2x daily Probiotic (35 billion) 2 pills 2x daily Sacchromedes Boulardii 2x daily
This is from the doc, so I have to go with their experience and take it. It would appear I am being treated for both simultaneously, although I was given the choice to go aggressively or gradually. So I guess I am a glutton for punishment.
There are clearly two fleshy, white bumps (not patches) on the left tonsil causing considerable discomfort with swallowing and stiffness of the tongue. The white bumps will not come off, so it's not tonsil stones and strep has to be ruled out. I don't have any trouble moving it, but both issues are really ramping up the anxiety. Does this sound familiar to anyone?
I have a dr appt but it's 2 weeks away.
I am trying to deal with it all.
Posts: 7 | From Union County, NJ | Registered: Dec 2010
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