On 7/13/05, while at her Dad's house, my ex husband called and reported my daughter had a fever. This is a common occurance with my daughter, as she was born with a birth defect that TRASHED her kidneys, bladder, and bowel and UTI infections are common with her.
Fever went away by the next day. She also complained of chills and "shaking".
On 7/15/05 she showed me her "Swollen crotch" upon returning from her dads house.
7/16/05 her Swollen crotch was no longer swollen, it was right in her groin, very very red and she was screaming in pain.
So I took her to the LOCAL Er. They told me she had a UTI. I thought NO WAY, her UTI's NEVER present this way, EVER. They didnt even scan the lymph nodes - which is what they told me was sticking out.
She had a VERY bright red ring around them, then a purple one, and then bruising.
The next day, I took her to her pediatrician, who immediately diagnosed cat scratch fever strain of bartonella. He sent her packing not to a local hospital
but to childrens hospital.
They, ( after a 6 hour wait) diagnosed lymphadenitis, lymphademopathy ( I know Im spelling these wrong), a possible septecimia due to the red streaking going down her legs
and bartonella- cat scratch strain, as well.
From 7/17 to the 7/23rd, she was admitted in childrens, the first two days in ICU, then moved to a private room. The whole time there, no answers. They kept telling me
"It takes time for bartonella titres to come back". YET, they had her on IV Clindamycin, IV rocephin AND IV vancomycin. The IV Vancomycin is what did the trick in getting that swelling down, but the node was still out.
On the third day, she herxed- proving to me that my daughter is also still infected with lyme.
On the 23rd, they discharged my daughter WITHOUT TELLING ME WHAT WAS WRONG, AS THEY DID NOT HAVE BLOOD RESULTS BACK YET. They sent her home with Suprax and Zyvox. For WHAT, i dont know because how can they treat something
when they dont know what it is? Why did they let her go, when they don't knwo what it is? Why didnt they biopsy? I Asked these questions and a nurse
snapped at me and said "You have to understand, your daughter was on IV Vancomycin, that kills anything".
Yeah, right.
By this past weekend, I had my daughter at my LLMD in New Jersey.
He took one look at her NOW THREE swollen lymph nodes and said
"That IS bartonella, BUT it is cat scratch strain, localized infection, NOT bartonella that goes systemic, but this is still very serious".
Childrens hospital had faxed him records. They did NOT fax him the blood results, and he was mad hot.
He added zithromax to her mix, and told me "take that child back home, and take her BACK to that ER right now".
And so, on Sunday, while trying to reach doctors on call at children's hospital, my daughter ( she has kidney disease, keep in mind)
started SCREAMING in severe severe back pain. I could actually FEEL the swelling on her back. She was also not making much sense ( a very sure sign of a kidney infection in such a little one)
I took her to the ER, They did a CT scan there, and declared it to be "pyleonephritis, moderate swelling right kidney". They looked at her lymph nodes and ADMITTED MY CHILD UNDER INFECTIOUS DISEASE, AGAIN.
Infectious disease came in to see me yet AGAIN yesterday. This idiot doctor declared, and to sum up the conversation:
ME: Look, I dont know what caused her lymph nodes to do this in the first place,DOES she have bartonella?
ID: NO, her past infection was positive, current is not.
ME: So what is wrong with my child?
ID: Well, we think her kidney infection has soemthing to do with it.
Me: No , it DOESNT, the lymph nodes were out FIRST, AND you need to consult her pediatric urologist.
ID: her pediatric urologist should have found out a long time ago what was wrong with her kidneys adn he didnt. I'm going to. Her lymph nodes are NOT infected BECAUSE THEY WOULD BE HOT TO THE TOUCH. They are just swelled.
ME: Expelative, expelative... RED RASH, AND SWELLING IS INFECTION.. stop messing with her kidneys.. if you arent going to DO an infectious disease JOB, then GET her urologist!
They are NOT going to aspirate my daughters nodes. Obviousy DUH this IS an infection. HOw would it go from ONE lymph node to THREE if it wasnt? Swollen lymph nodes MEAN infection. and this was the HEAD OF INFECTIOUS DISEASE!
They have NOT consulted her urologist, who is ALSO her kidney doctor, who also DOES know my daughter inside and out! I have put several phone calls into his office. They called a RESIDENT UROLOGIST who didn't tell her primary urologist the scooop!
Their plan is to keep treating my daughter with IV Rocephin. I asked them what for. They said "Well, we dont knwo WHAT infection that is, but it sure does take the swelling down".
And they plan not to find out. They arent going to aspirate or biospy.
They did this before. They put her in , put her on IVs, the swelling went down. Took her off, and the swelling came right back.
I'm at a loss. Really.
I feel what they are doing is illegal in a way. How can you keep treating with various antibiotics and you dont even know what someone has?
I just need prayer, coffee and sleep. And my daughter needs whole food. They dont even know what she has and they wont let her eat anything except soup for gods sakes.
My LLMD declared this is not a LLMD problem, as he said this strain of bartonella IS NOT tick borne bartonella.
However, he did do a gamut of testing on her and did do tick borne bartonella testing as well.
Anyone have any thoughts, besides sue the heck out of them
If you got prayers, I will take them too.
Just know that right here - at this place - you know your voice is heard and prayers/hearts and hopes go with you.
I was sent home after 6 days in the hospital without abx. Why? "They didn't know what they were treating." [I did receive IV abx while there.]
So you got the opposite thing going on, for the same reason. Ducks are weird!
I sure hope she gets better soon and that the suffering stops for all of you!!!!
------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
I think you need to teach those ducks!
Will this b.s. ever stop!!
Thoughts and Prayers are with you.
Hopefully Destiny will start feeling better soon!
My friend frequents the ER and when she doesn't get a reasonable answer she's off to the next ER. Granted I live in a very large city and have options...I don't know if you do or not.
I'll say a prayer. Hang in there.
My prayers are with you all. Please know that you will remain in my thoughts. I hope that something changes soon for her...poor thing. Having 2 little ones with lyme as well, I know how your heart aches for her.
I got so mad reading your post. These doctors are so incredible! Do we all get the same run-around treatment?
wish i could do more for you. I send you hugs. take care of yourself.
regards
paisley
Michelle
I am so sorry to know this. My thoughts and prayers are flying your way.
Much love,
Melanie
Threaten them with a law suit. Get your daughter to another hospital if possible.
That is my advice, from far away, with no expertise, but with great hope and great wishes that things get straightened out soon.
A hug for your little one.
Ann - OH
I believe they plan on discharging her soon. She is , according to the nurse "pending discharge".
She's in pain, she's weak, she's STARVING, she's swelling, she's rashed, and she's had diarrhea for days now. Sure, send her home.
Again, thank you all for your thoughts. I will wait to see what her testing shows on her lyme and bart. We are treating her for both though in between with zithromax and zyvox. Ugh!
Will check back in later.
Sending prayers your way
This really stinks!I cannot believe what you are being put through. It is a disgrace that anyone, especially a little girl, get overlooked and sent home. What happened to the floor doctor calling in a more special, specialist!
If he would stop with that ego of his, he would realize his limitations and find someone to help her, that can actually tell you what is wrong with her!
I am so tired of doctors treating symptoms and not getting to the bottom of things!
Please give your baby girl a hug from all of us well wishers at lymenet and tell her she has a bunch of people praying for her and rooting for her!
I think like one of the previous posters. her LLMD should talk with these ducks. All the docs need to talk this out. I wish ducks would talk to each other more. Even two duck's heads are better than 1 lone duckhead! Are they even trying to put their duckheads together over there?
Take care and email me if you want to vent!
so sorry about ALL of this crap.
dang Duck Motel anyway.
trout 
------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info
Yes, keep documented notes & get copies of everything going on....
my best to you all.
bettyg
How many times have we heard the same story - just minor variations on a theme.
As I've said before, you'd think they'd know what to do by now.
They've had a quarter of a century to learn.
As others have suggested, be sure to document & be sure to get copies of all test results.
These things sometimes have disappeared when they were needed later.
Are they checking her carefully to prevent dehydration?
So important.
Big hugs to all of you!!
I'm not sure who your llmd is, but even as good as our llmd are, there's got to be certain situations, symptoms etc...that are unique to even their training and/or expertise.
Is it possible to have your llmd consult with some other llmd? As ivebinlyme2 said, two duck heads are better than one (you almost get a complete brain that way...) But getting some ADDITIONAL llmd together might offer some clues that the others have missed.
Just throwing my ideas into the mix...stay strong, you aren't alone.
Healing wishes,
JavaBeing
Sorry to hear this is happining, Jodie!
primal scream and prayers sent!
By 2 pm today she told me things were "twirling". Then she told me "Ok mommy, things are really moving around me".
A little later on, while driving down the road, she FREAKED out and I mean completely lost it screaming and kicking my dash board. I had to pull over and calm her down. She told me I ran over people.
( I didn't)
and that she can't make the "stupid noises stop"
I didn't even finish driving home. I took her straight to the ER and her dad took over for me just an hour ago.
Her creatin ( kidney levels) and potassium were very way off. Potassium very low. I suffer hypokalemia, and I do know that it will MESS with your mind when dropped low. So willyour kidney levels.
WHY They sent a kidney patient home with the only thing they KNOW she has ( a kidney infection)
that actually caused bruising on her BACK is beyond me.
She is not at Childrens. She is at the hospital in Pittsburgh where she was born, W. penn.
Will keep in touch with my friends when I can. This is a very hectic time. I am dealing with lyme resurfaced, her herxing ( god I pray this is a herx)
and I KNOW that child has bartonella. I Dont care who says what. I know some ofthese symptoms like the back of my hand, because I lived it.
Now, I have a 7 year old hallucinating. Wonder if the doctors believe me now?
Just keep in mind that your LymeNet family is sending lots of concern, support, and most of all - prayers for Destiny and the family.
Let us know if there's anything that we can do to help you through such a difficult time.
We all know the frustration of disbelieving doctors. I hope that these recent events will convince the doctors that they have to find the source of her illness and better help her.
I know it has got to be confusing (the strange hallucinations) for Destiny. She is just a little child. Do remember that you are doing what you can to help her and don't sell yourself short. I know it is so frustrating, you could probably run the halls screaming by now!
You are being a good mommy to her and haven't and won't give up on her. Trust me even as confusing as her world is right now, she knows that you are doing everything you can to help her. Kids are smarter than we give them credit for. They read our faces and see what we are feeling.
I really hope and pray things are better next time we hear from you. Please keep everybody posted as time permits you to. Thanks for this last update. -ivebinlymed2
My prayers and thoughts are with you and your family for experincing the results of duck medicine. I have had my share of ducks so I can relate to you.
Take care of yourself also and we are here for you.
Hugs...Jean 
Hang in there, eventually the abx will work it's magic. If it's being caused by something other than lyme, then tell these ducks to keep her in their precious hospital for a few days.
Good Lord, if their not willing to admit a child hallucinating with a raging kidney infection, who the hell would they admit ?
My prayers are with you...
!
Love and HUGZ
[This message has been edited by Lishs mom (edited 06 August 2005).]
Children's hospital in our city almost killed my daughter with an insulin error (ten times the dose) and many other mistakes. Alarmed, we left "against medicla advice.".
Then they called DSS on me for leaving, and blamed me for her medical problems. They said I was medicalizing her psychological problems, despite extensive, documented medical issues , and many, many varied and positive labs.
I think the truth was: they were afraid I would sue.
Eleven months later, we are trying to deal with the same complicated medical picture (involving Lyme, meds, yeast, insulin-dependent diabetes, thryoid and adrenal issues, gross edema, heaadache,autoimmune illness, GI issues, on and on) that have only gotten worse because of the delay in treatment caused by their attack on me.
I used to defend "ducks" and say here on Lymenet that we should not be so negative about what medicine has to offer us. Now I know that the medical establishment can represent more than just incompetence: it can be vicious and evil in its efforts to defend and sustain itself against attack.
Crime, document everything. Consult a lawyer. Try to get copies of everything from the hospitals, before they change the record. I didn't believe they would do such a thing, but, boy, I do now. It may take a few tries to get copies. Make sure to mention the WHOLE chart including nurse's notes, med orders, labs, assessments, the works.
I'm NOT sying they will attack you, only that you should be able to sue or get some satisfaction when this is all over.
The scary thing is, parents like us NEED medical help for our kids, but where is it it be found?
We are working with two good doctors now- they are "good" in every sense of the word. Doctors like this are out there but it's like finding needles in the haystack.
Plesae let us know what happens, wish we could be more help.
[This message has been edited by Lyddie (edited 07 August 2005).]
I was WONDERING why my 7 year daughter was wearing a DIAPER when they discharged her from childrens, and why every single item of clothing, including panties, was soiled from bowel.
My duaghter DOES have a neurogenic bowel ( in so many words) as well, and its not uncommon for her to have accidents.
But the more I thought about it, it IS uncommon for her to wear DIAPERS due to not being able to control herself.
They are treating her with flagyl and good old electrolytes.
Now, the worst news: They are teaming up with oncology to have a look see at my daughter. They told me that infectious disease should have had nothing to do with this
anymore after day THREE of not knowing what "infection" she had. They fear cancer.
They are going to biopsy my daughter.
I, am a living wreck. Seriously.
Some of her blood values are a little "fishy" to them. Her lymphocytes are extremely high and her Wblood cell count is absolutely through the roof.
They did some other testing on her and it has indeed provoked them to do a biopsy with what they have seen.
I am pulling all her files from childrens.
THey have already done a CT Scan and an MRI of her entire pelvis. Childrens hospital woudl NOT do this! They had a month and they WOULDNT.
They are giving her IV for her kidney infection. I got to see one of the pediatrics while there, who was the pediatrician there when she was born.
They had a Social Worker come talk to me and try to convince me to take my child back to childrens hospital.
I interrupted with :hi, you didn't introduce YOURself, Im Jodie K, destiny's mom AND a paralegal, what were you saying again?
I never though I would get to the point of basically threatening. But Im not ashamed that I did.
She is doing MUCH better though since the start of flagyl, much much better. Thank god.
When you hear cancer dr., it is scary but at least ALL avenues are being looked at to try to find out what is wrong & causing all these things to happen. Best wishes & prayers still headed your way.
bettyg
We have had a few cancer scares and all I can say is (as you know ) it is something they look at in certain situations, but it is good not to react until there is something to react to. Forgive me for stating the obvious...I only say this in retrospect after wasting a lot of emotional energy on these scares.
That said, please keep us posted.
quote:
Originally posted by TheCrimeOfLyme:
I'm about ready to collapse with stress adn worry.On 7/13/05, while at her Dad's house, my ex husband called and reported my daughter had a fever. This is a common occurance with my daughter, as she was born with a birth defect that TRASHED her kidneys, bladder, and bowel and UTI infections are common with her.
Fever went away by the next day. She also complained of chills and "shaking".
On 7/15/05 she showed me her "Swollen crotch" upon returning from her dads house.
7/16/05 her Swollen crotch was no longer swollen, it was right in her groin, very very red and she was screaming in pain.So I took her to the LOCAL Er. They told me she had a UTI. I thought NO WAY, her UTI's NEVER present this way, EVER. They didnt even scan the lymph nodes - which is what they told me was sticking out.
She had a VERY bright red ring around them, then a purple one, and then bruising.
The next day, I took her to her pediatrician, who immediately diagnosed cat scratch fever strain of bartonella. He sent her packing not to a local hospital
but to childrens hospital.
They, ( after a 6 hour wait) diagnosed lymphadenitis, lymphademopathy ( I know Im spelling these wrong), a possible septecimia due to the red streaking going down her legs
and bartonella- cat scratch strain, as well.
From 7/17 to the 7/23rd, she was admitted in childrens, the first two days in ICU, then moved to a private room. The whole time there, no answers. They kept telling me
"It takes time for bartonella titres to come back". YET, they had her on IV Clindamycin, IV rocephin AND IV vancomycin. The IV Vancomycin is what did the trick in getting that swelling down, but the node was still out.
On the third day, she herxed- proving to me that my daughter is also still infected with lyme.
On the 23rd, they discharged my daughter WITHOUT TELLING ME WHAT WAS WRONG, AS THEY DID NOT HAVE BLOOD RESULTS BACK YET. They sent her home with Suprax and Zyvox. For WHAT, i dont know because how can they treat something
when they dont know what it is? Why did they let her go, when they don't knwo what it is? Why didnt they biopsy? I Asked these questions and a nurse
snapped at me and said "You have to understand, your daughter was on IV Vancomycin, that kills anything".
Yeah, right.
By this past weekend, I had my daughter at my LLMD in New Jersey.
He took one look at her NOW THREE swollen lymph nodes and said
"That IS bartonella, BUT it is cat scratch strain, localized infection, NOT bartonella that goes systemic, but this is still very serious".
Childrens hospital had faxed him records. They did NOT fax him the blood results, and he was mad hot.
He added zithromax to her mix, and told me "take that child back home, and take her BACK to that ER right now".
And so, on Sunday, while trying to reach doctors on call at children's hospital, my daughter ( she has kidney disease, keep in mind)
started SCREAMING in severe severe back pain. I could actually FEEL the swelling on her back. She was also not making much sense ( a very sure sign of a kidney infection in such a little one)
I took her to the ER, They did a CT scan there, and declared it to be "pyleonephritis, moderate swelling right kidney". They looked at her lymph nodes and ADMITTED MY CHILD UNDER INFECTIOUS DISEASE, AGAIN.
Infectious disease came in to see me yet AGAIN yesterday. This idiot doctor declared, and to sum up the conversation:
ME: Look, I dont know what caused her lymph nodes to do this in the first place,DOES she have bartonella?
ID: NO, her past infection was positive, current is not.
ME: So what is wrong with my child?
ID: Well, we think her kidney infection has soemthing to do with it.
Me: No , it DOESNT, the lymph nodes were out FIRST, AND you need to consult her pediatric urologist.
ID: her pediatric urologist should have found out a long time ago what was wrong with her kidneys adn he didnt. I'm going to. Her lymph nodes are NOT infected BECAUSE THEY WOULD BE HOT TO THE TOUCH. They are just swelled.
ME: Expelative, expelative... RED RASH, AND SWELLING IS INFECTION.. stop messing with her kidneys.. if you arent going to DO an infectious disease JOB, then GET her urologist!
They are NOT going to aspirate my daughters nodes. Obviousy DUH this IS an infection. HOw would it go from ONE lymph node to THREE if it wasnt? Swollen lymph nodes MEAN infection. and this was the HEAD OF INFECTIOUS DISEASE!
They have NOT consulted her urologist, who is ALSO her kidney doctor, who also DOES know my daughter inside and out! I have put several phone calls into his office. They called a RESIDENT UROLOGIST who didn't tell her primary urologist the scooop!
Their plan is to keep treating my daughter with IV Rocephin. I asked them what for. They said "Well, we dont knwo WHAT infection that is, but it sure does take the swelling down".
And they plan not to find out. They arent going to aspirate or biospy.
They did this before. They put her in , put her on IVs, the swelling went down. Took her off, and the swelling came right back.
I'm at a loss. Really.
I feel what they are doing is illegal in a way. How can you keep treating with various antibiotics and you dont even know what someone has?
I just need prayer, coffee and sleep. And my daughter needs whole food. They dont even know what she has and they wont let her eat anything except soup for gods sakes.
My LLMD declared this is not a LLMD problem, as he said this strain of bartonella IS NOT tick borne bartonella.
However, he did do a gamut of testing on her and did do tick borne bartonella testing as well.
Anyone have any thoughts, besides sue the heck out of them
If you got prayers, I will take them too.
My daughter had to have a bone marrow test this year to rule out leukemia, so I kind of know the fears that are running through your mind. Thank goodness her tests came back normal.
If they do bone marrow, which can be painful afterwards (particularly for lyme patients that are very pain sensitive), I hope they give her a strong pain drug afterwards.
I am not trying to scare you, but although put under my daughter's bone marrow site ached and ached afterward for weeks. It is so invasive taking a piece of bone marrow. Of course we didn't know our daughter had lyme yet and her oncologist says most kids hop off of the table when they come to after bone marrow.
Not my daughter, it took a while for her pain to stabilize, after two doses 45 minutes back to back of Lortab. So this is FYI, just in case Destiny is the same, push for them to manage her pain, if she has any.
I so don't want to scare you, but the reg docs didn't know squat about pain thresolds and lyme. Course, if they did, we wouldn't have even been exploring the possibility of leukemia and would have known she had lyme!
When you said biopsy, I didn't know where from? Anyway, I just wanted you to be prepared if it was bone marrow they are doing. Our oncologist was superb, he just couldn't and didn't prepare me for how painful that would be for our daughter after.
I didn't want you to be misinformed by the ducks that will tell you it is nothing.
Even if this is the test you have to have done, please try not to be afraid. You know, sometimes you have to rule out these things. There is no way around it. I just know that for me, I would have liked to have been better prepared.
It also made me look like a big fat liar to my daughter, whom I hadn't prepared for the pain.
I am praying everything goes smooth for her during the test and there is little if any pain involved. Praying those tests also come back clean, with no sign of cancer.
------------------
Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express!
oops!
Lymetutu
All I can say is that I am thinking of you and am hoping and praying it will all turn out alright.
Wish I could give you a practical hand. But, I can't.
hugs.
Your daughter is blessed to have you for a mom!
Deb
DLL
------------------
i'm a mom of kiddies with lyme. but, not as sick as your children. you are amazing at how strong you are. my heart breaks when i read this stuff. they are harming children as well as adults!
to quote cbb, well, not quote exactlly, i've already forgotten, but: " you'd think by now they would know what to do. after all, they've had half a century to learn."
i know a ped I.D. mom socially thru the private school we had sent my daughter to , due to her un-dx lyme she got from me. her younger brother has congeital lyme and lyme from nursing.
she wins "best of" awards. when i went to school officials for help, as my insurence co. would not OK i.v. abx , even though i had a pos pcr of my spainal fluid, and i was so sick and in more pain then any living thing should ever have to endure, they said they would put thier heads together. all that happened is they sent children's services out after us.
the pediatric I.D. has given lots of money to the school. would have been nice if at lease she would have clued me in on what my children were suffering from. i would not recommend her.
grant t. liu, an abusive UPENN neuro-opt i was sent to who denied treatment, put lies in my records to make it hard for me to get care after leaving UPENN's care, and was major abusive, is now specializing in treating children!
i learned thru the internet that he has had his hand in developing four drugs to treat M.S. and he has a book that students in this country and other countries trains the next crop of neuro-opt., and has gotten excellent revues on American amazone.com ( except mine!).
he has a financial interest in four M.S. drugs, practices in a lyme endemic area and missed that i had tons of Neuro-lyme symptoms as well as other, and now he specializes in treating children. and in this area, M.S. is more often than not, mis-dx lyme!
i will come back from my grave to expose them if i have to.
to quote Credance Clear Water Revial: " Who'll Stop the Rain?".
i really wish i knew good specialist to send you to. the health care in our country is pitiful.
You may want to call Dr. S in Pennsalvania--she was such a blessing--not just for my children but in also helping treat me and my husband.
Write if you would like her number.
Hang in there--you have a lot people praying for you.
Linda
I'm so upset over this.....please post when you get a minute and let us know how everything is going.
Lou and I have all of you in our prayers.
Love,
Angela
Jodie- you are such a strong and loving and INTELLEGENT Mom and caretaker. We should all be so luky!
I dont know why all this is happening to your daughter and your family right now, but I hope you are able to maintain your incredible stamina and also take care of your needs when possible.
Best,
trails
When you have a minute & have enough energy, please give us an update.
We're concerned and we care!!
DLL
The infected lymph nodes are still EXTREMELY swollen and still very visible.
Today, she is running a high fever again. She began not to feel so well around 8 pm, and sure as crud- she had a 100.6 degree fever.
She goes for more kidney tests in September as well, but I may have to up the appointments on that.
I am praying that her fever goes away. I called her dad, and everyone in his family has been throwing up and running fevers. She just came home from his house just two days ago, so I am hoping ( as sad as it sounds) that she picked up what they did.
Will keep you all posted. Still yet, a month later, I do not know what is wrong with my kid.
Jodie
Has anyone considered Bartonella?
Swollen lymph nodes can be a symptom for Bart as well as a lot of other things.
All possibilites should be considered.
Thanks for taking time to give us an update.
We'll all be praying that you receive good reports soon.
Bartonella was the very first thing that crossed all doctors mind. However, when they tested my daughter, tehy told me she came back positive for PAST infection, but not current. I wanted to kick them right in the head. Don't they know any better?
Still yet, they discharged this child home to me. It has been over a month now, and my daughter's nodes are so swollen, I can stick a penny in between them and it would stay there
WHILE SHE IS STANDING UP!
I take her on the 24th ( next wednesday) to oncology.
She is still taking antibiotics, and she was seen by my LLMD in Jersey. I drove her there from PA. He said this was , if it was bartonella, the actual
cat scratch strain that stays localized, nto the tick borne bartonella. I'm not so sure about that. We have had actual ticks in OUR HOME, and ALOT.
He gave her zithromax. She is HERXING on augmentin. I will be taking her back to him and report that she is herxing. HOw the hell can you herx if you don't have lyme? My daughter actually DOES have lyme, but we had it licked last summer.
Now, I'm back to square one: bone pain, hip pain, leg and foot pain, headaches, neck aches, dizziness and now, hallucinations with swollen lymph nodes.
IF anyone is out there, there is a bartonella specialist in New Jersey, name starts with an E. I need his contact information. I think Cootiegirl may have it.
I'm not saying my LLMD is bad, as he is treating me for bartonella all over again, but
I just don't think my daughter should be under his care, for my own reasons.
I have been having alot of personal issues going on at home.
I have received a few phone calls that I haven't been able to return yet. I'm not ignoring anyone, I have just been preoccupied.
My oldest son contracted that flu that is going around from his father and has been throwing up the past two days. Guess who feels like they have the flu now? MOMMY. \
I'm just in absolute awe that they sent my daughter home to me like this. The child is in pain. SHe can't wear undies, because they rub her nodes and it hurts. So, I have been out
buying boy cut underwear for my daughter. Hey, gotta do what we can, right?
Her summer has been nothing but hospitalizations and idiotic doctors.
She is due to go back to school next week; I don't see it happening. I lost my gram two years ago to lymphoma, and Im scared witless
that they are now sending my daughter to oncology.
But, at LEAST oncologists DEAL with lymph nodes, ID doctors don't specialize in that!
I'm not feeling so hot myself, so I'm gonna crawl back in bed. Got the day off. Woohoo.
I'll keep in touch,.
Jodie
My heart goes out to you and your children.
I am so sorry you are going through all of this.
Have you thought about seeing Dr. J? It is just a thought--he might be able to suggest someone.
Please stay with us and keep us all up to date--you are on our minds and in our prayers.
God bless,
Lindaa
E-mail me & I'll send the info again.
I know you said male LLMD.
Your email was sent back. Email me if you need to.
Can you email me when you get a chance? I have something I want to send your daughter.
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