i got a call from Jefferson Hosp in Phila. yesterday...i'v been trying to get a appointmant for my husband...well yesterday they called... they had a cancelation for today at 2:00...they have a great Neuro Dept....told them all about his 7 years of head pain and eye pain...and that 3 yrs ago found out he has Lyme....i'm so happy i was up most of the night...please say a few prayers that he can get some relief for his non- stop head pain....thanks Madge
Posted by madge (Member # 13704) on :
yes i know they have a headache center..we have been to two different headache centers here in NJ and all they seem to do is treat the symptoms...we need to find out the cause...he needs to get a real answer to why his head and eyes hurt 24/7 now over 7 yrs...after we get a cause then maybe a center will help...Madge
Posted by Pinelady (Member # 18524) on :
If you get no help there. Igenex is the best lab to
test. It is most likely Lyme. And they may not find
it. Many here have to challenge with antibiotics
before they can achieve a positive test. As the
markers are hidden by our own cells and will not
show until some are killed. But Igenex is clearly
getting very good with this problem. If you have
not already I suggest getting a copy of all
original blood work and results. You can post
seeking a LLMD in NJ if you need to. Good Luck
today.
Posted by madge (Member # 13704) on :
He was tested at Igenex and does have Lyme.. been in treatment now for 3 yrs and no change in his head and eye pain...our Lyme Dr said to see a Neuro Dr so thats what we a doing... thanks for you info...this has been a battle for almost 8 years..there has to be an answer for all the head problems thats all he really has...he is bed bound and no life for him ....Madge
Posted by feelfit (Member # 12770) on :
Madge,
You were looking for good wishes and prayers, I offer both up to you and your husband!!! I will be thinking of you both today and hope for some type of resolution.
We have talked before, I have the constant daily headache as well. From the shoulders down I feel pretty darn good! Except now some breathing issues too..
Anyways, Chin up, hope for the best, and so happy for you to have gotten this appt.
Please let me know what transpires.
Feelfit
Posted by mtree (Member # 14305) on :
Madge...
just wanted to let you know you and your husband are in my thoughts!!
mtree
Posted by MorningSong (Member # 19989) on :
Madge,
I too have been seeking to resolve head and eye pain. LLMD has stated that it may be Neuro Lyme, but has taken me off Doxy and put me on something else to verify if Intracranial pressure is due to Doxy and resolves itself in couple weeks:
Continuing to keep you and your husband in my thoughts and prayers. Please keep us updated on your progress.
[ 08-14-2009, 04:53 PM: Message edited by: MorningSong ]
Posted by pepperspeck (Member # 18837) on :
Sending you positive thoughts for relief and answers for your husband and also for you as his wife.
Posted by DaveNJ (Member # 17362) on :
Madge,
somehow, someway your persistence is going to pay off...sending positive thoughts.
Dave
Posted by madge (Member # 13704) on :
Thanks all..we just got home at 5:30...we waited
3 hours to see the Dr...then she was very thorough
took her time...looked at all the reports i had
with me...gave him a good exam...then she left to
confer with the higher up Nuro Drs...they have no
answers but wants him in the Headache Center but
even they can't get him in...they are going to
try because most of the centers people only
have headaches short term...they hope because
hubby has had them now for over 7 yrs..they
might take him....they did give him a script..
they were surprised he is not on headache meds..
most of the ones they mentioned he tryed and
didn't work anyway...but this one is new
but my head hurts and i can't understand it
anyway...all in all i was pleased...we have to
start calling the center on monday and every day
they said...i will keep on keeping on...again
thanks all for you good thoughts...Madge
Posted by mtree (Member # 14305) on :
madge...I hope he gets some relief....
mtree
ps...I think I mentioned to you that I have a doc at the Neuroscience Institute in Edison NJ...just something to have incase you don't get anywhere with this one...
Posted by madge (Member # 13704) on :
Margie, thank you sweet heart...i'm so washed out right now...but i'll keep on trying... and to top it off i got a bad infection on my leg...thank God i had a Dr app on tues.. the first thing he said to me was..whats with your leg..i said just a scrape he on no its not i have Cellutilis..he said if i waited a day or so i could have been in the hosp.myself...
so life goes on and i'll say good by and have a nice cry....God Bless you and thanks for your prayers...Madge
Posted by seibertneurolyme (Member # 6416) on :
Madge,
I am assuming your husband has had an MRI? But has he had a SPECT scan? Or an MRA -- either of those tests could be ordered by a neurologist?
Has anyone tested his red blood cell magnesium? Magnesium deficiency makes a person much more sensitive to pain.
Does your husband take CoQ10 or pycnogenol (pine bark extract) or phosphatidylcholine or lecithin? I am assuming he takes the good fats -- fish oil and/or flaxseed oil? Resveratrol might also help block quinolinic acid -- a neurotoxin caused by brain inflammation.
All the things I mentioned will fight free radicals and inflammation in the brain.
Vasodilators like gingko or prickly ash bark extract might help.
Or something like lumbrokinase to thin the blood.
Is his homocysteine high? That is also a neurotoxin which can be controlled wth extra B vitamins.
As you can see there are many reasons why a Lyme patient might have headaches.
Best wishes and keep us informed of his progress.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by Samandaxo (Member # 21034) on :
Madge
My brother spent 7 days at Jefferson on the neuro
unit in April due to extreme eye pain with
photosensitivity. Sadly all the experts, refuted
the positive Lyme result that he received from
his primary care physician while in the
hospital. Of course these "experts" ordered more
testing. His spinal fluid showed nothing
and his second western blot was negative. A
specialist from the Headache clinic was also
brought in on consult. All in agreement that my
brother did not have Lyme disease. This did
not sit right with me cause he just was not
getting any better and his symptoms were more and
more debilitating so I dragged my brother to a
LLMD who tested him using IGENEX.......result
again positive!! Sadly it is 4 months later
and he has been on a long list of medication for
Migraines and still suffers horribly to this day!
No one can find the correct treatment...the
neurologists, the headache specialists, the
opthomologists at Wills Institute....I will send
out a prayer to you and your husband...perhaps
he will have more luck!!! Please keep me
updated...I am desperate to find answers for my
brother!!!!
Crisann
Posted by pab (Member # 904) on :
Madge,
Did you talk about pseudo-tumor cerebri? What's the name of the med your husband got today?
We took Jake (age 23) to a new pain clinic this morning. It looks hopeful, but it's an out-of-network clinic. The doctor is trying to get it covered in-network. Jake has had a constant, severe headache for at least 10 years.
I hope your husband and my son finally get some relief from the pain.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Pinelady: It is most likely Lyme. And they may not find
IF you're talking about the hospital not finding it... I'm almost 100% sure they won't .. even if they did they wouldn't do anything.
I hope you can rule things out and find out if it's something other than Lyme causing the pain. Your husband deserves to be pain free!
Posted by bottola (Member # 21643) on :
I go to the U of Penn and they are AWESOME! PM me if you want the dr's name. He is a God send!!