I never thought I would say this, but I am praying that hubby's SPECT scan next week is bad -- would be wonderful news if it shows hypoperfusion and/or vasculitis.
The alternative is not so good -- new neuro doc wants hubby to see a brain surgeon. Thinks hubby may have permanent brain damage from his prior mercury poisoning and more recent tickborne illnesses. As the doc said hubby could be a textbook case for mercury poisoning -- gave us the copies from a neurology textbook.
Couldn't quite get thru to the doc that the symptoms listed were the exact same ones which improved in the past with certain targeted antibiotics. And amazingly the tremors/myoclonus are probably 75% better this week with the IV pain meds (IV Dilaudid).
Obviously this doc does not believe in persistant infection as he is sending hubby to an infectious disease doc in Pittsburgh.
Did get orders from the doc for a brain MRI (has been over a year) and a lumbrosacral MRI (has never been done and that is the source of hubby's back pain) and a SPECT scan (never done).
Hopefully these tests can all be scheduled next week in Pittsburgh and then we will have some real info to work with rather than hypothetical theories. Probably wishful thinking on my part -- tests will most likely raise more questions than answers.
Hubby has an appointment with a gastroenterologist next week as well. G.I. symptoms slightly improved -- 3 ER visits last week and 0 this week so that is something to be thankful for.
After the 13 hour car trip hubby was very symptomatic during his appointment. At least the doc never questioned that hubby had a real physical illness.
I would so love to prove to this doc that Lyme or another tickborne illness is at the bottom of hubby's symptoms. A local LLMD sends all of his neuro patients to this doc -- wonder how many of them are told they don't have active tickborne infections?
Will probably be a week at least before I can post hubby's test results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
Good luck with tests and with the doctors appointments.
Keep us posted.
-------------------- God Bless You! Everything..is just my opinion. Posts: 6641 | From Michigan | Registered: Jun 2001
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TerryK
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Member # 8552
posted
Thanks for letting us know. I pray that something helpful comes out of this. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
bea,
thank you so much for the detailed update on your dear hubby! wow, you both keep going thru the wringer of "go here, go there"; can't be this or that.
bea, i'm so glad you have educated yourself so much, and his 24/7 SOLDIER tracking down every lead.
bea, i hope you get what you want so things can be pin-pointed down vs. left up in the air.
13 hr. trip...my back/legs hurt for you both; yes, his physical condition was definitely noticed by this doc.
thoughts and prayers headed to you in pittsburgh this week for DEFINATE RESULTS this time. give hubby an extra hug/kiss from us all ok bea!
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
bea
Thoughts and prayers for you both.
"I have come to understand that it is not protesting what we do not like that counts. It is choosing what we do which, ultimately, changes things." Joan Chittster
You amaze me with all you do!
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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I also had a spect scan done in PA (near Philly not Pittsburgh). I was surprised that the report came back indicating lyme disease.
I'm not sure if it was a good radiologist reading or if what they saw wouldn't be anything else by lyme.
I hope you get the answers you and your husband are looking for, so you find the right treatment. Posts: 867 | From PA | Registered: Jan 2006
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posted
prayer sent for best of outcomes Posts: 2708 | Registered: Feb 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Bea,
You and hubby definitly have my prayers.
I really hope you're able to get some answers and get poor hubby better. You've both been through so much already.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Don't understand why a LLMD would be sending people to a neuro who doesn't believe in persistent infection.
Posts: 8430 | From Not available | Registered: Oct 2000
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
I'm thinking the SPECT will be very informative. Though it's not absolutely diagnostic for lyme, I am betting it's going to be positive.
I'll be thinking of you two and wishing you well.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Bea
If he is a classic case of mercury poisoning, doesn't he need to be chelated?
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
sending you prayers & hugs & hope the test results will show only the truth about what is going on .
hang in there
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Praying for you both. Keep us posted. You're two tough people!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Hi Bea,
I'm very glad to see your update.
I'd love to hear more about this doctor.
I made an appointment with him in Feb. for my 14 yo daughter. After discussing my daughter's problems, I was told the doctor would probably order more bloodwork, a brain MRI with a MRA???, a PET or SPECT scan, and possibly a spinal tap, but I'll politely refuse that procedure.
Do you think it would be worth our time to keep this appointment?
PM me when you are up to it.
I'm praying for you both. Traveling is very hard.
Nancy
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
High mercury is another way your husband and I are similar. Since chelation made no difference for me, my conclusion is mercury is not responsible, or at least not the primary cause. I think Hg levels need to be extremely high for impact.
I assume he had hair and/or urine analysis of mercury. What were his levels?
Posts: 727 | From USA | Registered: Mar 2006
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
I'm adding my prayers.
You should be given an honorary M.D. for your knowledge - you could teach all the doctors more than any medical school ever could!
Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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posted
Bea, right down interstate 70 south 20 miles from Pittsburgh,there is a psychiatrist.Dr.Patel,he knows of lyme and spect scans,he went to columbia university,and knows about what lobes are affected,and profusion,which causes mental problems in lyme,memory,etc.HThe Dr. that reads the spect scans at washington hospital knows how to read a spect scan,for lyme.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
dear Bea-
sending you and your husband warm hugs and godspeed on your latest trek.
for what its worth, i don't think there is anything nothing odd about hoping for a SPECT that will document in black and white a cause for what your husband's been experiencing.
i know i felt more sane after seeing my SPECT results. I KNEW I had lyme, my llmd KNEW i had lyme, BUT my bloodwork was inconclusive by non-ILADS standards, and the MRI/spinal tap were negative.
The brain damage shown on the SPECT was (and is)scary, but not as scary as having an endless number of other dire possibilities presented that you have to feel your way through even when you think they're wrong-- what an awful roller coaster you're both on.
i'll be praying most of all that you find clarity.
love, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
posted
Bea...I'm hoping and praying for some good news and good results with this doctor. Will be thinking of you!
Posts: 1366 | From Southeast | Registered: Sep 2005
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posted
Just a brief update. Hubby is sleeping I hope -- zonked out with IV Ativan. Just got back from a useless ER visit. To stop hubby's tremors/myoclonus/seizure-like episodes the ER slightly overdid the IV Ativan.
Hubby thinks he has been in a car wreck (didn't recognize his own car) and thinks I am the sitter and not his wife of 14 years. He has had similar episodes of confusion before after seizures, but these episodes are always more scary when they last for hours rather than minutes. Just have to hope he wakes up tomorrow and doesn't remember much of today.
CT scan of abdomen did not show paralytic ileus -- they had him drink the contrast dye and wait 1 and 1/2 hours. While he was waiting they gave him 3 mg of IV Ativan -- by the time of the test his sweating had stopped and stomach pain was slightly improved. I think the large dose of Ativan finally relaxed the G.I. muscles and caused the test to be "normal".
As for the mercury issue -- hubby went through chelation prior to contracting Lyme disease. Felt he was 90% recovered. Mercury levels which were originally high returned to normal. Have been retested at least 5 or 6 different times by different docs all using different methods.
The real test in my mind is that once he contracted Lyme disease chelation was no longer of any benefit -- previously had positive results with every DMPS treatment.
This neuro thinks the mercury damaged neurons in the basal ganglia and that the subsequent Lyme caused further irreversible damage. I just don't know anymore. Do feel that mercury caused a weakness and that that is why his Lyme is primarily neurological.
Hsbhmom -- Your mailbox is full. Since your daughter has not had years of Lyme and tickborne treatment I think the neuro might be of benefit. At least you could get some tests done and then if need be follow-up with someone who is more Lyme literate. A Lyme friendly neuro is almost as hard to find as a lyme literate one.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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bettyg
Unregistered
posted
bea, thanks for another update on hubby; so sorry to read of another er visit, but very disturbing his loss of memory and knowing who you are too! thoughts/prayers/hugs/kisses headed your way bea!
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