posted
Hello everyone! I have been sick with rocky
mountain spotted fever, lyme, bartonella, and
possibly babesia since 2006. Before 2006, I had
a recurring illness with my liver enzymes going
up and terrible battles with EBV. For the past
year my dad has been terribly sick as well. He
has gone to three different neurologists and they
will not even awknowledge lyme disease in
Florida. However, my dad is from Michigan and
his grandfather died of Lou Gehrig's disease..
as did his great grandfather. Which really had
me thinking... maybe we all have it. He had an
MRI done which showed mild white matter disease
(no acute hemmorages and no enhancing images).
They found a cist 1 cm in size with the white
maximally sinus mucusal. He has mild disc bulges
at C4, C5, and C5-C6. He also had mild central
canal and neuro foraminal narrowing due to
uncovertebral hypertrophy. His symptoms include
tremors (especially with his left hand- they
told him he has a lot of nerve damage in his left
arm, but totally ruled out parkinson's.)
increasing neck pain, his left hand and
occasional right will cease up and won't move,
tingling on the left side, and his right great
toe has numbness. He has a lot of stomach
problems too... upset stomach all the time.
He cannot find a doctor to do a western blot and
I am trying to persuade him (he is a nurse- with
over 20 years of experience) that it is time to
see a LLMD! I am hoping your comments can
persuade him too... I am trying to help him, not
push my diagnosis on him as well. Thank you all
for your time with reading this.
Posts: 38 | From Chattanooga, TN | Registered: Dec 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Tell him that LLMD's do a thorough differential diagnosis and know what other diseases have similar symptoms, so even if it's not Lyme, he may find out what it is.
I'm with you though, it's probably Lyme. Even if the non-LLMD's did the test, they would probably do the wrong one.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I'm just not sure what else I can do to persuade
him to go to a llmd. In Florida, there are not
too many.. and HE NEVER travels. I wish I could
do more. I really think he has lyme with
the last test results.
Posts: 38 | From Chattanooga, TN | Registered: Dec 2007
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jamescase20
Unregistered
posted
Dr S is a pretty good book writter, perhaps he could help, even theres a 5 min free phone consult, maybe he could convice your dad to actually get help. Igentix western blot, or live blood microscopy would be me first choice on a budget, any doctor sign off on the paper work, and you got either test. Live blood microscpoy MAY help, but I woundnt trust it alone. But good adjunt. Hes in the SAME state your dad is in. Email me if you cant find his website.
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posted
Lyme and co-infections are so common whats the big deal with the Dr's up there.
Spend a few hundred and order your own tests from Igenex or Fry labs. If your dad is a nurse he could understand that it's at least worth doing a basic blood test.
Although Lyme is a clinical dx, many do test positive.
Come on, your talking about your life and quality of life--- spend the money now as you cant take it with you.
Ok if you do your own test and they come out positive and your Dr refused to test you... now you got a case.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
posted
Hubby has been disabled for over 7 years. The first 2 years he kept getting the comment that his tremors were not Parkinson's so they had to be from anxiety -- go see a psychiatrist.
Eventually hubby was diagnosed with Lyme, Babesia and Bartonella. Probably has Mycoplasma pneumonia as well as several viruses -- Borna virus, HHV-6, CMV and EBV.
Hubby has had at least 10 brain MRI's, probably the same number of EEG's for "seizure-like" activity. Has had 6 endoscopies -- always has gastritis and/or duodentitis of unknown etiology. And 3 spinal taps.
Has seen over 20 neurologists who didn't really have a clue -- except for a couple. Have lost count of total number of docs, ER visits and hospitalizations.
Hubby's MRI's do show 4 or 5 white matter lesions -- only 1 when he first got sick. SPECT scan from Columbia shows global hypoperfusion consistent with Lyme or vasculitis.
I could go on and on but I think you get the picture.
Most recent new symptom was muscle rigors which basically paralyzed hubby for up to 4 hours. Episodes occurred 2 -3 times daily. Eventually after 6 months finally found a Bart med which has these symptoms plus the tremors and myoclonus and headaches under control. G.I. symptoms continue to persist but are slowly improving.
7 years of pretty constant nausea has been a major issue to say the least.
Good luck and please at least get tested. If the problem is longstanding suggest doing some of the newer tests such as CD57 and C4a. Hubby has never come close to testing positive on any Western Blot test although he does have one positive PCR test for Lyme.
Babesia and Bartonella both showed up on bloodslides from Fry Labs despite previous treatment.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi JM
Remind him he Only has One Life -
Ask him - is he going to Let a couple of germs take it away from him ???
You live where Lyme is perty common also -
Most Ductors are worthless when it comes to DX Lyme -- Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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bettyg
Unregistered
posted
.. jm, give him some links to watch of our LYME VIDEO COLLECTION including UNDER OUR SKIN, etc.
ask him, won't you do this for us for our FATHER'S DAY GIFT to yourself and from us; we want you around to make memories with your grandkids, etc.
tremors; does he have any FREEZING in his steps where he can't go anywhere?
extremely SLOW MOVEMEMENTS taking 3-4 minutes to move or do something
shuffling of the feet
hubby was diagnosed with ESSENTIAL TREMORS for 5 years until last year when it became very pronounced and dx MILD parkinson's then .... nore MORE severe now with the above happpening as well as my PULLING him out of his LIFE OUT CHAIR and moving his legs/feet at meal time and then pulling him up again...
best wishes to get definite testing done.
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