2. Treated for a few days w Doxy... Headache started
3. Then switched to Iv Cefitrioxne?? for a few weeks
4.Then found benign brain tumor in occipital lobe Meds stopped for a couple weeks/
5. Tumor removed end of JAn 2008... Now steroids
6/ In an out of hospital with sporadic treatment with cefitrixone, steroids and pain meds for headache.
7 april 2008 diagnosed with Hydrocephalus and vp shunt plasced.
ALL THIS TIME SHE HAS HAD AN UNRELENTING HEADAche
8. aLL THE DUCKS SAY SHE HAS HAD PLENTY OF TREATMENT AND COULDNT HAVE LYMES
9. Currently she just and an ICP done which they found nothing worng w her ICP but they did find that she has orthostatic intolerance after she passed out on them. and her heart rate shot up.
10 NOW SHE HAS URINARY PROBLEMS, PVS ON HER EKG, PUTS, HER EYE SIGHT IS GETTING WORSE AND THE HEADACHES ARE STILL THERE!
11. I DID A BUNCH OF LAB WORK TODAY ON HR AND EVERYTHING I DID SEEMS ALL TO NORMAL
12 HAVE AN APPOINTMNT WITH A LLMD NEUROLOGIST ON JAN 20TH/ DO YOU THINK ITS WORTH MY TIME TO GO OR COULD THE DUCKS i'VE BEEN SEEING ARE JUST WRONG. AND THERE IS SUCH A THING A CHRONIC LYMES.
HOW COULD ALL THESE PEOPLE COMPLAINING OF THE SAME SIMIALR PROBLEMS BE WRONG? DO YOU THINK A GRREAT NEUROLOGIST COULD DO SOMETHING FOR THIS KID. SHE ONLY SHOWS IGG BEING POSITIVE???
AT THIS POINT I JUST NEED SOMEONE TO GIVE ME HOPE AND GUIDANCE. PAB YOU ARE ALWAYS THERE FOR ME. IM AFRAID YOUR BOYS AND MY DAUGHTER HAVE THE SAME THING. SOME TYPE OF NERVE DAMAGE??
Posted by seibertneurolyme (Member # 6416) on :
So sorry for all you are going through.
In my opinion there are only 3 or 4 lyme literate neurologists in the U.S. And even some of the best ones know next to nothing about the coinfections.
I think there is a pediatric neuro in Kansas but do not know the name. Suggest contacting the mother at the website below.
If the neuro you plan to see is not one of the ones I listed then I have my doubts as to how lyme literate they are.
Best wishes.
Bea Seibert
Posted by Carol in PA (Member # 5338) on :
Magnesium may help with the heart rate problems, and with headache.
A strong antioxidant can sometimes help with vision problems. One member here had good results with mangosteen juice, Trace Minerals Research Ultra Mangosteen, from Vitacost.com
Carol
Posted by lou (Member # 81) on :
What is her babesia and bartonella status? Bart can cause masses that are identified as tumors. Babesia can cause headaches.
Not sure if a neurologist is needed. My experience with specialists is that they hardly ever understand lyme and only good for testing that they do not interpret. Maybe try good lyme literate doctor instead. It does not sound like you have had one for your daughter yet.
Steroids in this situation will have complicated the treatment of infections.
Posted by tick battler (Member # 21113) on :
if you are thinking of taking your daughter to Dr. G in NJ, I would stay away from her. She failed to diagnose my neighbor who clearly has lyme/coinfections and she failed to diagnose coinfections in my husband.
I agree that your daughter needs evaluation by a LLMD first. It appears she was never adequately treated from what you have said. All 3 of my children have made huge improvements with lyme symptoms after 1.5 years of treatment with a pediatric LLMD. One of my young boys had an 8 month headache that finally went away when he had been on Rifampin for a couple of months for bartonella.
Hope this helps.
tickbattler
Posted by richedie (Member # 14689) on :
I am sick of those idiots.
Sorry you are dealing with this. Your poor child. I feel for you. Sending you a big hug!
Where are you located???? Are you opposed to se a doc in Maryland or PA?
Posted by MagicAcorn (Member # 8786) on :
If you are seeing Dr. AC in NJ you should go. He is a wonderful doctor and will work with you. Between him and Dr. F in Ct. I got my little boy back six years ago.
Posted by richedie (Member # 14689) on :
Who is Dr. AC? Can you PM me?
Posted by randibear (Member # 11290) on :
can you at least start her on herbs or something? might help.
Posted by waterfam2 (Member # 14956) on :
We are seeing dr r in Neptune. I believe he was on The Board of Directors for the lymediseaseassociation.org/WhosWho.html
I know she has been tested for co infections and came back neg.
Posted by nefferdun (Member # 20157) on :
I agree with the other posters as many of her symptoms sound like bartonella. I hope you can get her to an LLMD. You can buy hyaluronic acid from the health food store which is collegen. Do not get rooter comb or chicken sternum - get vegetarian source. It is the only thing that has helped my eyes and the results were almost immediate. I take 100mg every day. It is also good for the joints and skin - all the places where lyme likes to hide out. Lyme lives in collegen and there is so much of it in the eyes. Bartonella also affects the eyes and causes bad headaches. I also get hot flashes and my shins hurt. There are many characteristic signs seen in the skin that help to diagnose it. You cannot rely on lab tests as the labs only test for two strains and there are over 30. There is also the Bartonella like organism, BLO, and they are not sure what that is - many of us have that. I sure hope you can get help. Doctors are not fool proof. You must be proactive, read and study as they usually aren't up to date on what does not interest them.
Posted by waterfam2 (Member # 14956) on :
According to treelady? she said she had some success with herbs so I am ordering some now.
I myself feel she never had enough antibiotics. Especially when they were only giving her one kind.
Doctors can be so difficult. and stupid! I sometimes wonder if giving her diamox could have prevented them from putting the VP shunt! If we only would have had a LYMES EXPERT at the time!
Lou : Her tumor was a dermoid that has been there since birth full of hair that didnt make it out during fetal development. I think the tumor was like a speed bump, had nothing to do with Lymes or the hedaches just made it more difficult to treat her.
I do beleive the steroids did not allow her to have sufficient treatment. SHe seems to have more problems about every four weeks. Misses school at least once a week
Posted by waterfam2 (Member # 14956) on :
SORRY! WE ARE SEEING A DOC IN NEPTUNE NJ.
WE KEEP RUNNING INTO THE SAME PROBLEM. DR J WOULDNT SEE HER BECAUSE SHE ISNT A CHILD. SOME OTHER LLMDS WONT SEE HER BECAUSE SHES A CHILD. THEN THEY FIND OUT SHE HAD A DERMOID REMOVED AND A VP SHUNT AND THEY REALLY GET NERVOUS.
Posted by waterfam2 (Member # 14956) on :
WHAT TYPE OF SIGNS DO YOU SEE IN THE SKIN WITH BART?
I MADE THE MISTAKE OF PURCHASING A HORSE FOR MY DAUGHTER AND LEASING A STALL AT A DUMPY BARN WITH LOTS OF RATS FLYS AND TICKS. BOY I WISH I COULD TURN THE CLOCK BACK!
Posted by waterfam2 (Member # 14956) on :
GEE I AM SO EMBARRASSED. I WROTE THE ABOVE LAST NIGHT WOTHOUT MY GLASSES. THERE ARE ALOT OF MISPELLINGS ECT. IN MY MESSAGE.
Posted by waterfam2 (Member # 14956) on :
SO I CANT TYPE WORTH A CRAP! OH WELL THAT THE LEAST OF MY PROBLEMS!
Posted by pab (Member # 904) on :
Does your daughter have a programmable shunt? If so, what setting is it on?
Eye problems can be very serious with pseudo-tumor cerebri.
Did your boys show papilladema?
Posted by lymephobic (Member # 17556) on :
Sent you PM
Posted by pab (Member # 904) on :
quote:Originally posted by waterfam2: Did your boys show papilladema?
My sons do not have papilledema. They have their eyes checked by an ophthalmologist every 6 months.
Posted by Pinelady (Member # 18524) on :
I would guess the initial treatment sent it into
cyst form and sneaking back up on you again, as
syphilis is known to do in its latency. I would
start treatment again. A few days or few weeks of
treatments may not hit a chronic infection with the
stealthy borrelia. It could take years. Prayers.
Posted by Lymetoo (Member # 743) on :
She's positive for Lyme on the IgG?? Then she has it.
She gets sick every 4 wks?? Sounds like Lyme there too.
Don't give up getting help for her. And remember, if she's been given steroids over and over any further testing is likely to show falsely negative.
Posted by NellieK (Member # 23554) on :
Sorry for your daughter's problems. I'm getting the run-around from my daughter's infectious disease doc, but fortunately her pediatrician is VERY cooperative even though he doesn't know anything about Lyme. My daughter has daily headaches, passing out, fatigue, fevers for a couple hours/day every few days. She's been to the neurologist (she was previously diagnosed with epilepsy, but that's been resolved), had an MRI (negative except it did show a chronic sinus infection), and EEG/EKG (negative). It's like pulling teeth trying to get in with the infectious disease doc. They FINALLY (after 2+ weeks of trying to get an appt) told her pediatrician what tests to order (hopefully through Igenex, but who knows), so at least we can get the ball rolling on whether or not she has Lyme, or if it's just a chronic sinus infection that's been causing her problems. Keep at it with the docs! Print out what you can and take it to your appointments. It's amazing how little most docs know about Lyme disease.
Posted by NellieK (Member # 23554) on :
Oh, yeah: there IS such a thing as chronic Lyme disease. Left untreated or inadequately treated, Lyme DOES stick around and rear its ugly head again and again. You need to have your daughter tested and tested AGAIN until she has SEVERAL tests show up negative.
Posted by waterfam2 (Member # 14956) on :
i dint think the test for antibodies would eve come up negative, once youmake igg itswi you for life. Yes I fo know she needs osee a lynes specialis thi has been ging on too long.
Posted by waterfam2 (Member # 14956) on :
gee i really need to pay atention to my typing. I'll retype the above message.
I know that once you have lymes, you will always be postive for IGG antibodies. Perhaps you are talking about another test??? which I HOPE THE NEW DOC CAN TST ER FOR.
SHE HAS TESTED POSITIVE TWICE FOR LYMES. I KNOW SHE MUST HAVE CHRONIC LYMES. sHE HAS ONLY BEEN TESED ONCE FOR CO INFECTION AND I AM UNCERTAAIN WHAT TEST OR LAB THEY USED,
I AM SO TIRED OF THE DOCS LOOKING AT ME LIKE I AM SPEAKING A FOREIGN LANGUAGE WHEN I MENTION ANY THINK ABOUT LYMES
i DID HAVE AN APPT W DR E IN NJ A MONTH AGO BUT CANCELLED BECAUSE ANOTHER DUCK CONVINCED ME THAT SHE AGAIN DID NOT HAVE AN ISSUE W LYMES,,,,, RIGHT?
Posted by METALLlC BLUE (Member # 6628) on :
The child likely has Chronic Lyme Disease. I have no reports on Dr. R. There are a couple Neurologists who see Lyme Disease patients in New Jersey. You also have options in surrounding states for Neurologists I believe.
If you need a list of doctors with further information, I collect patient reports and can provide you the material.
Just let me know which states you would like lists of physicians for. This information will allow you to see what other patients think about many of the doctors on the list.
Posted by Paul M in MA (Member # 14630) on :
I'm sorry to hear what your daughter is going through.
My daughter has some of the same symptoms, including the awful head pressure for 2+ years. She has also had papilledema which is a swelling of the optic disc due to pressure in the brain. This can effect the eyesight also.
Even though she has the papilledema her intra-cranial pressure was normal based on a lumbar puncture.
Her ophthalmologist was the one who found the papilledema with a machine that takes pictures of the optic disc at a very high magnification and can measure small differences in the eye.
Her eye pain was helped with the medicine Acetazolamide over a number of months. It has gradually brought the swelling down to almost normal.
She has been treated with oral and IV abx which did not reduce her head pressure. She had to quit college and work about 2 years ago because of the head pressure.
One thing that did take away her head pain was a narcotic patch called Fentanyl. It's the only thing that made a difference after 2 years of horrible pain. It's a slippery slope though because even though it takes away her pain it can be addicting.
Many doctors are nervous to prescribe such a strong med for an extended period of time.
We had to take her to a pain clinic to get the prescription and they monitor her closely.
We're still trying to find a treatment that will eliminate the pain. Don't get discouraged though since I know their are people on this board who had the head pressure and it went away with treatment.
If you're still looking for an LLMD, we take my daughter to Dr. R in NY City. He is very knowledgeable and pleasant and great to deal with. His office staff is very helpful and they answer the phone much more than most offices.
I wish you luck. I know how heartbreaking it is, as many of us do, to see your child this sick.