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    Old 08-17-2005, 07:57 PM   #1
    mwmama
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    Daughter with possible Lyme symptoms

    Back in late May/early June I wrote about the tick bite I had. Everyone was so helpful. I also wrote separately about my daughter's bull's eye rash 6 or more yrs ago. Shortly after that I took her in for this pain that comes and goes in her hands and legs. Started 1.5 yrs ago. Each time it would last for a few weeks at least, go away, and then come back a few months later. The first couple times it was mainly her hands, but then got to be in the legs more and more, too. Ortho checked her for injury/RA, both neg. In June it started acting up again so I took her in. Dr was going to have this other ortho check it when I took her for her scoliosis c/u. Well, end of June/beggining of July she started having lots of headaches and visual disturbances, too. Had an eye exam and it just showed mild nearsightedness. She also started having lots of shortness of breath. Thought it was to do with her asthma, though it usually doesn't flare up except in winter. She was also suffering from early satiety (feeling full after just eating a few bites of food, even when she was starving).

    July 11 she suddenly had a bout of numbness in her legs. July 12 same thing. That night she ended up in ambulance because her legs were freezing, hurting, numb in places and with her heart problems I thought it might be something related to that. She walked with footdrop at the hospital and was unable to discern between sharp and dull objects in places. They let her go after ruling out mainly heart things (think they were thinking same as I). From that day til now she has not had a day without pain and sensory impairment.

    For one whole week all she could do was sit there freezing or too hot. She would put on a flannel shirt and two pairs of socks, but minutes later be taking them off. Back and forth. Mainly it was her legs that were the worse. This 12 yr old vibrant girl became like an invalid! She started developing more and more things as the days went by. Coordination problems, dizziness, tingling, numbness (hands,arms, legs, feet), excruciating pain and discomfort especially in the feet, heat sensitivity, balance problems, stumbling, falling, over/under shooting movements of limbs, numbness of the face, slurred speech, problems coordinating speech, tremors. The list goes on, but this is the majority. Now the symptoms were not all present at once most days, though a few days they were (those were the worst!). The ped really believed something neurological was going on. They sent us to a university hospital, but we had so many problems there. The dr had thought they might admit her and get some tests done, but they didn't. They wanted to schedule an MRI and EMG w/i a month. During this visit an unrelated problem arose with her ovarian cysts. She was doubled over in pain and vomiting and these two neuros just sat there and ignored it for 30 min. She was crying and hurting, but they were trying to make her stand on one foot and hop and other things. They had already said they saw weakness, especially on her left side. I just couldn't believe they didn't care. I ended up rushing her to the ER where she was given morphine and testing showed she was having some torsion. We were in 3 different hospitals there (2.5 hrs from home) in 2 days time. Sigh...

    Could never get them to set up the tests. I called this place 3 times over 2 wks and finally gave up. We got a new PCM, as there were some problems with organization at the previous office that impacted the quality of care (we weren't the only ones to feel this...many other families left). We found a wonderful family practitioner and he got an MRI of the brain and spinal cord, which showed nothing abnormal, other than an arachnoid cyst in her brain. He has put her on some neurontin and it has seemed to help with the pain in her feet, which still continues to be one of the primary symptoms. Some days she is better some worse. Some days she has trouble walking, talking, etc. Some days the symptoms are pretty mild.

    MS came up a lot with the different drs, but I remembered that so many with lyme are misdiagnosed with that. The things it really look like are lyme, periperhal neuropathy (which can be due to lyme), MS, and fibromyalgia. It definitely is something and we need to find out what. We haven't seen the new neuro yet, but are supposed to see her Aug 31. I am hoping that goes well. She will probably order the EMG and maybe a spinal tap.

    She had two lyme tests, but I am going to present the info to the FP tomorrow at her c/u about one of the labs like igenex. There is MS in the family, but then again I keep thinking about that bull's eye rash she had. Coincidence? I just don't think so.

    My husband will be back in a couple wks from Iraq. Yea! And then he will be able to advocate for her with me. It was so hard on him to not be here for her/us. It has been a rough road that I couldn't have traveled without God's help. Especially during those early days when she was doing so terribly (falling, hot/cold), before we had adapted as we now have, and nobody was doing anything to help her. I am thankful we finally have a good fp who cares.

    Thank you for reading this.

     
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    Old 08-17-2005, 08:51 PM   #2
    ticker
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    Re: Daughter with possible Lyme symptoms

    Hi

    It is heartbreaking what your daughter is going through and absolutely unethical the way doctors are treating (not treating) her. A bullseye rash is a definite sign of Lyme. The rash alone merits treatment.

    Besides Lyme disease, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. In my non-medical opinion, it sounds like your daughter has Lyme and Babesiosis. Babesiosis is similar to malaria and can cause the chills, sweats, shortness of breath, dizziness, and heart problems among other things.

    I am glad your husband will be returning soon. I cannot imagine how difficult it is for you not to have him with you.

    Hang in there okay. Good help is available and you are not alone.

    Last edited by Administrator; 03-25-2012 at 11:39 PM.

     
    Old 08-17-2005, 08:52 PM   #3
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    Re: Daughter with possible Lyme symptoms

    Dear Joshua,

    I can't believe all you have been through and the stress of having your husband in Iraq to boot. My son was there from last August until late January. I did lots of praying.

    I wonder if your insurance would pay for your daughter's blood to be tested thru Igenex. You can pull the paperwork up and have your doctor sign it if he will. I think you might have to pay out of pocket and the be reimbursed if they will cover it.

    I am also wondering if the bulleye rash from a few years ago is not the reason she is having all of these problems now. If at all possible she needs to see a lyme literate medical doctor and if you tell us where you are located Ticker will tell you where the closest one is.

    I too have the hot/cold feeling. My legs sometimes are so cold/hot I am not sure which of the two it is. I am always turning the fan on/off in our den because one minute it is cold the next it feels stuffy. It has gotten better though with treatment.

    My homeopathic says my hormones are screwed up from the lyme but I am not sure it would cause a cyst. This might be just something she was going to have anyway unless a stressed immune system can contribute to it.

    I really feel for you both especially with school starting. Laurie's son Mark had a terrible time convincing his teachers how sick he really was. Laurie just had to take the bull by the horn so to speak.

    I will say a prayer for your husband's safe return and your daughter"s improved health and your peace of mind. Keep us posted on what you do and ask any questions you need to because somebody here will have an answer for you. God Bless!

    Betterdaysforme

     
    Old 08-17-2005, 11:54 PM   #4
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    Re: Daughter with possible Lyme symptoms

    Thank you so much, Ticker and Better Days! I think many cannot understand nor appreciate the daily challenges unless they have been there.

    Those drs at the university were so cold. They actually started talking about this all being caused by stress. When they asked me if there was anything going on at home I said, "No." The female said, "Yes, your husband is in Iraq!" I am thankful that even the first pediatrician didn't believe that for a minute. And these neurologists are lauded by many around here to be the best!

    This is a very tough but sweet girl we are talking about. She is the type that takes everything so well, no matter what it is! In fact, she has taken this wonderfully, too. Just broke my heart, though, the other day when she attempted to run after her younger siblings and said, "Mom, I wish I was normal again."

    My dear husband said he has many war stories to share when he gets back. And unexpectedly we have many to share with him. The things we went through, especially since in addition to the daughter I write of there are 4 younger children at home, and we have no family here!

    Ticker, we are in NC and I remember someone mentioned Dr Jemsek. He is about 4 or so hours away from us. I will tell our dr about him and the ped in CT. He is such a good dr, one that actually LISTENS...can you imagine that? One other thing I like about this new office is that even the FNP who saw us last week, when going over all the symptoms, mentioned maybe it is lyme. I don't think they are very lyme literate, but that they listen is what counts. I plan to go in tomorrow with some info about Igenex and also the lyme drs and see what we can come up with.

    Better Days, I am glad your son made it back safely. I am praying this will end soon and all our guys/gals will come home!

    I do know hormones cause the cysts, because the GYN specialists we have seen are pretty sure that hers are from messed up hormones, so that is real interesting. Honestly, I really did wonder if there was a link. Just too weird. She had two really big ones for a long time. One over 8cm and the other over 6cm! Now there is just one that is about 3.5cm. She has been having menstrual bleeding for 2 months straight now!

    All this and the darling will finally become a teenager the very day her daddy gets home. What a birthday gift, that will top anything else I could give her!

    We do homeschool, so that has made it a lot easier in that respect. Otherwise I don't know what I'd do...sending her off when she is so sick at times! She usually has to take the electric cart's most stores have when we are out, as the walking is too much for her. I am thinking about checking into getting a wheelchair for her so that we will have it when she needs it.

    Well, I tend to go on most times! I am so thankful to have others who understand!! Along with my dear husband who is such a wonderful support, even from afar. I will update very soon.

    God bless and thank you, again!

     
    Old 08-18-2005, 05:38 AM   #5
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    Re: Daughter with possible Lyme symptoms

    Dear Joshua 2415,

    I am glad you are home schooling that is one battle she won't have to fight. I hope your new doctor works out and will get in touch with one of the llmds.
    I know they are always willing to co-operate with other doctors to make it easier on the patient.

    I also wonder about the hormone problem being the culprit with the cysts.
    This disease is bad enough without dealing with all the little side issues that sometimes are even more troubling than the lyme.

    I too will be glad when our soldiers return home. There are way too many being killed and even more with lifelong disabilities. I will be glad when the Iraqis can fend for themselves. I will keep your hubby in my prayers. Let us know when he gets back.

    Betterdaysforme

     
    Old 08-18-2005, 07:11 AM   #6
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    Re: Daughter with possible Lyme symptoms

    Dear Joshua,

    Once again, I feel so bad about your daughter and what your family must be going through.

    I have heard many wonderful things about Dr. Jemsek as many of the members here are patients of Dr. Jemsek, I hope you make an app't soon.

    I also spent 5 years of going to different doctors and I also had a Rash. I lost the use of my legs for about 1 year, when I could use my legs, I was limping and it was so painful. Slowly I am getting better so there is hope!

    It really sounds to me that your daughter is suffering from Lyme and it's coinfections from all the symptoms you listed.

    You sound like a wonderful Mom and I know you will find the answers soon and that your daughter will be on the road to recovery.

    God bless you and your family,
    Sending all of you Angels
    Denise

     
    Old 08-18-2005, 09:27 AM   #7
    mwmama
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    Re: Daughter with possible Lyme symptoms

    BTDT, I will bring the lyme connection up to the GYN we are seeing at Duke in Sept.

    Denise, I am glad you are getting better! I remember when I had mono several years ago and then shortly after got hit with menningitis. The only good thing about that was my husband was on recruiting duty and they let him stay home for 3 wks to care for me as I was on bedrest. It was the only vacation he got in 3 yrs!!! So it was bittersweet. But I remember how when I finally got to go back outside my older children (we have 8 total) were laughing at me because I was going, "Oh, look at the mountains, and the clouds, the grass..."

    I know even now compared to how she was a few weeks ago is such a relief, except when she has a bad day or two. I just thank God she is strong has faith in Him because it has kept her from getting discouraged about everything! I know we do have angels encamping around us for sure!

    It is just so nice to have a "family" here who understands things that people you have known your whole life or for years cannot quite grasp, as they haven't been there. My daughter is happy when I relay everyone's messages to her.

    I just now got a call that our FP is very sick and is going home at lunchtime. They offered for us to see another NP (not the lady we saw before, but a man). They are all very good and caring from what I have seen, but I instead opted for tomorrow with our Dr just to keep that continuity of care. I will just make some calls myself here then today and see what I can get find out. I will update soon.

    God bless!

     
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