I'm new to this board. I'm posting because my mother has been ill for 8 years, and I suspect lyme disease.
We never saw a tick bite, or a rash. But my mom seemed to become sick very suddenly about 8 years ago. Around that time, we briefly visited an area in Northern California where there were a lot of deer.
Around the same time, we also took a trip to Europe with an aunt and uncle. My aunt suddenly became sick after that trip, too, with a mystery illness that affected her liver. Sadly, I never learned more about my aunt's illness and she passed away. But the timing of her and my mother's illnesses seems like too much of a coincidence.
We were in Venice on that trip, and I remember a lot of mosquitoes in the area. Also later learned that Venice is known for lyme disease.
So I'm not sure exactly where my mother might have picked up lyme disease, but I have a couple of suspects.
My mother was first diagnosed with rheumatoid arthritis, then lupus. After researching on the internet, though, I suspect lyme.
A doctor recently had her take the Igenex IgM test (only, no IgG test) and the results were:
39 IND 41 + 45 + 83-93 IND
all other bands -
Considering that my mother's been on prednisone for years (which I've read might affect the test results)...is it possible for her to have test results like these, and still have lyme?
The doctor who ordered the test doesn't seem to be too concerned about lyme. But he isn't an LLMD, as far as I know. And he's ruled out other things, like heavy metals, mycoplasma.
I'm looking for an LLMD (already have the names of a couple in San Francisco) to confirm or rule out lyme. But I thought I'd ask everyone's opinion?
My mom does have a lot of symptoms that seem to me to be consistent with the symptoms checklist for lyme disease:
low-grade fevers
sweats, regardless of the room temperature
sudden weight loss (when this all started)
fatigue
frequent urination (especially at night)
constipation
heart palpitations (used to be much worse, not so much now)
***joint pain in both hands, both knees, also hitting her right elbow and shoulder now
burning sensations in hands
numbness in right arm
light sensitivity
poor balance (back when she was still walking; fell several times)
sleeps too much during day; insomnia at night
hypercoagulation (led to mini-stroke 2 yrs ago)
Does it sound like I'm on the right track with lyme disease? Or is there something else I should be considering?
I appreciate any input on this, especially from people who know more about lyme disease than I do.
Thank you,
Mariela
Posts: 23 | From San Francisco, CA | Registered: Apr 2008
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posted
Lyme definitely looks like a possibility based on the test results you have posted.
As I am sure you know, R.A. and lupus are both usually diagnosed "clinically" -- based on symptoms primarily.
I would definitely consult an LLMD and do a trial of antibiotics.
Also, many Lyme patients, especially those who are late diagnosed have coinfections -- the tick gave them other diseases in addition to the Lyme.
The sweats point toward the possibility of Babesia -- a red blood cell parasite similar to Malaria.
Good luck.
Your mother is lucky to have you helping her look for answers.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
hi, please PRINT OFF dr. c's explanation of western blot igm/igg. then circle the positives and IND for igm and igg; read hte meanings for the positives ok!
did i ask you yet if you wanted my newbie package of 113 pages? if not, send me a private message, 2 people standing together icon, and ask for it....info plus!
so glad you're looking after good old mom!
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posted
Hi Bea, ProudtoServe -- Thanks for the encouragement, and also the advice on coinfections. I had been wondering if my mom might have them; now I have to look up Babesia, and the others, to learn more about them.
Bettyg -- I did receive the patient info, thank you! Started going through it last night; it's a lot of information. So much to learn!
Thanks,
Mariela
Posts: 23 | From San Francisco, CA | Registered: Apr 2008
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Yep, sounds and looks like lyme.
I have many of those symptoms as well.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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bettyg
Unregistered
posted
marie,
in there are BABS AND BART SYMPTOMS LISTS, use EDIT, FIND, and type in SYMPTOMS LIST and hit enter.
keep hitting enter until you find the 2 separate lists of symptoms, etc.
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Thanks for pointing out the symptoms list. I followed the link to the posting on this site, and it sounds like my mom might have bartonella, too.
I followed a link to a symptoms table, and certain things (like heart palpitations and ringing in ears) seem to point more to Bartonella.
But I wouldn't be surprised if she had both Bartonella and Babesia.
Thanks,
Mariela
Posts: 23 | From San Francisco, CA | Registered: Apr 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi LSF-
From the symptoms you list your mom sounds like she has Lyme and Babs --
Sounds like Babs For Sure --
Bart patients usually have skin streaks that look like Stretch marks from having babies -- and Soles of feet hurt -
Lyme and the other co infections NEED to be -- Diagnosed By Symptoms ONLY --
The tests are perty much Worthless - Many Many things car cause Inaccurate results -
With you mom being sick for so long- even makes the test worse --
Moms test is More positive than My tests were and I saw the Bullseye bruise weeks before I got very sick --
BullsEye is 100% Proof of infection -
The Bullseye bruises -- Do Not Hurt --
It usually only lasts a short time Most people dont see it - I was Lucky --
the 39 band being IND means the test saw Something -- 39 is one of the main bands that shows infection --
It would be good if you can figure out if your mom got sick soon after the trip to Europe --
There is different strains of germs there -
Now let me give you some good news -
I have both Lyme and Babs for 20 years-
I got to where I was bed ridden -
I had No Idea that a person could be that sick and still be alive --
4 yrs ago I figured out that I have lyme-
Now after 3+ years of treatment - I almost feel like a New person -
I am getting my life back --
If I Can Do It your Mom Can Too --
Your Mom is going to get Sicker during treatment --( Herx ) There is No way around it --
Treatment is Defiantly No Fun - Painful -- and recovery takes TIME -
There is Thousands of people on this site that have gotten Well - and got on with the Rest of there Life -
There are 2 Very Good LLMDs (Lyme doctors ) in Frisco --
One is moving to DC soon tho -
DR S will still be in Frisco and He is One of the Best -- Very Very Buzzy -
Call and make a appointment Today- It takes a while to get first visit with Any LLMD - Swamped -
There are programs that will give your mom her medicine for Free -- Look into it --
If your mom has Babs - Do Not Stop Babs Treatment once she has started treatment - even for a day - Its Important -
One thing your mom can try before she is able to see a LLMD is try the Jays Babs Test -- From what I have seen it is at least as accurate as test for babs are --
Go to the store and by 10 litters of - Tonic Water -- get the diet kind - By the beer and wine ect
Have your mom drink 2 litters of Tonic Water a day - more if she can do it --
If she has Babs -- There is a Good chance that she will have a Change in her symptoms in one day to 5 -
Symptoms MAY get Better or Worse -- What is Important is that there is a Change in her symptoms --
Tonic Water ( TW ) has a Small amount of Quinine in it --
No Symptom change - No Babs -
Hope this Helps --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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"Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.
Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics."
==============================
Band 39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.
Band 93: The DNA or genetic material of Borrelia burgdorferi.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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