LymeNet Flash: Good news..got a app. at Jeff Hosp.

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»	LymeNet Flash » Questions and Discussion » Medical Questions » Good news..got a app. at Jeff Hosp.

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Author

Topic: Good news..got a app. at Jeff Hosp.

madge
LymeNet Contributor
Member # 13704

posted

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

--------------------
madgen

Posts: 342 | From newjersey | Registered: Oct 2007 | IP: Logged |

madge
LymeNet Contributor
Member # 13704

posted

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

--------------------
madgen

Posts: 342 | From newjersey | Registered: Oct 2007 | IP: Logged |

Pinelady
Frequent Contributor (5K+ posts)
Member # 18524

posted

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.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008 | IP: Logged |

madge
LymeNet Contributor
Member # 13704

posted

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

--------------------
madgen

Posts: 342 | From newjersey | Registered: Oct 2007 | IP: Logged |

feelfit
Frequent Contributor (1K+ posts)
Member # 12770

posted

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

Posts: 3975 | From usa | Registered: Aug 2007 | IP: Logged |

mtree
LymeNet Contributor
Member # 14305

posted

Madge...

just wanted to let you know you and your husband are in my thoughts!!

[group hug]

mtree

--------------------
worrying about tomorrow takes its strength away from today

Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008 | IP: Logged |

MorningSong
LymeNet Contributor
Member # 19989

posted

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:

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1125540
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1125522

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 ]

Posts: 515 | From In His Loving Care | Registered: Apr 2009 | IP: Logged |

pepperspeck
LymeNet Contributor
Member # 18837

posted

Sending you positive thoughts for relief and answers for your husband and also for you as his wife.

--------------------
I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!

Member red (Member # 1886)
Registered: 26 November, 2001
70 posts

Posts: 164 | From NJ | Registered: Jan 2009 | IP: Logged |

DaveNJ
LymeNet Contributor
Member # 17362

posted

Madge,

somehow, someway your persistence is going to pay off...sending positive thoughts.

Dave

--------------------
On my journey to wellness - One day at a time.

Posts: 989 | From NJ | Registered: Sep 2008 | IP: Logged |

madge
LymeNet Contributor
Member # 13704

posted

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

--------------------
madgen

Posts: 342 | From newjersey | Registered: Oct 2007 | IP: Logged |

mtree
LymeNet Contributor
Member # 14305

posted

madge...I hope he gets some relief.... [bow]

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...

--------------------
worrying about tomorrow takes its strength away from today

Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008 | IP: Logged |

madge
LymeNet Contributor
Member # 13704

posted

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

--------------------
madgen

Posts: 342 | From newjersey | Registered: Oct 2007 | IP: Logged |

seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

posted

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

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004 | IP: Logged |

Samandaxo
Member
Member # 21034

posted

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

Posts: 14 | From NJ | Registered: Jul 2009 | IP: Logged |

pab
Frequent Contributor (1K+ posts)
Member # 904

posted

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.

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

Posts: 2775 | From MN | Registered: Apr 2001 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

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!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96223 | From Texas | Registered: Feb 2001 | IP: Logged |

bottola
Member
Member # 21643

posted

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!!

Posts: 11 | From nj | Registered: Aug 2009 | IP: Logged |

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