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DD13 had a 3 week follow up visit for lyme's today......

MariannNOVA
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MariannNOVA

MariannNOVA

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and if I thought I was maybe expecting too much as I really thought DD should be much better by now, well, the doctor agrees with me and she was not happy with the lack of progress as well.

 

So.........................we will give it another week on the two antibiotics (one of which she only began taking last week), wait for lab work that the doctor ordered today, and allow dd to have one more OMT (osteopathic manipulation technique) session on monday with the osteopathic physician...her first session this past monday has provided one of two tiny positive blips.

 

We will return one week from today/tomorrow and re-assess. Our MD is thinking that if she doesn't like the white count from dd's lab work, we may begin IV antibiotics.

 

Prayers please -- good thoughts please -- both are much appreciated.:grouphug:

 

Update here and in post #37:

Ladies -- thoughts and prayers to you and yours -- heavens -- we have all been through it, haven't we. :grouphug:

I will update in the original post as well: keep those prayers coming -- dd's lab work was quite good. the doctor's instructions were to keep doing what we are doing -- dd showed almost no inflammation in her sed rate, her white count was good and coming down, her cbc was good......and when i picked her up after her class today, she actually looked as if she was feeling better.

I am pushing water like crazy -- the doctor and i spoke with her about how important it is for her to be drinking alot of water. I also think that is making a difference. She went to the pool this afternoon (I like her to get some sun despite the doxy photo sensitivity) and she likes to get some of those foam noodles and just float -- she says it makes her joints feel so good. so, that is our plan right now. she returns to the osteopath on monday. Tonight i am thankful and relieved.:grouphug:

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TranquilMind

TranquilMind

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and if I thought I was maybe expecting too much as I really thought DD should be much better by now, well, the doctor agrees with me and she was not happy with the lack of progress as well.

 

So.........................we will give it another week on the two antibiotics (one of which she only began taking last week), wait for lab work that the doctor ordered today, and allow dd to have one more OMT (osteopathic manipulation technique) session on monday with the osteopathic physician...her first session this past monday has provided one of two tiny positive blips.

 

We will return one week from today/tomorrow and re-assess. Our MD is thinking that if she doesn't like the white count from dd's lab work, we may begin IV antibiotics.

 

Prayers please -- good thoughts please -- both are much appreciated.:grouphug:

Praying for your daughter.

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MariannNOVA

MariannNOVA

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:grouphug: Praying, Mariann

 

Sending healing thoughts. The waiting is rough. :grouphug:

 

:grouphug:

 

I'm sorry it's not clearing up quickly. Praying this round works!

 

Praying for your daughter.

 

:grouphug:

 

I'm sorry things aren't progressing. I hope things start to improve this week.

:grouphug:

 

:grouphug:

 

Praying. So sorry she is still struggling with this.

 

:grouphug:

 

:grouphug:I'll be praying here.

 

Thank you all so much -- I am so thankful that I can come here and ask you to intercede on her behalf. (((hugs)))

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Catwoman

Catwoman

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Praying, Mariann. :grouphug:

 

Sometimes the medications take a while to work, and it can be very discouraging, and then all of a sudden, something seems to click and there's a big improvement, so I'm hoping that will be the case for your dd.

 

I know that, when I had Lyme, there was a point where I thought I would never feel better, and then, not too long after that, I guess the medicine finally started to work for me. My Lyme titer tests were still nothing to write home about, but I felt a lot better, so I was better able to deal with having to stay on the medication.

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MariannNOVA

MariannNOVA

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Oh that is just awful. She is so sweet and was handling it like a trooper. How are you holding up? Was she able to start school? :grouphug::grouphug:

 

Hi, heather -- i am discouraged -- dh is on travel ALOT in the coming weeks and i guess i feel like the summer has vaporized in front of my eyes -- and for poor M as well. She has lost her entire summer - i feel so badly for her. She is supposed to start school on 9/7 and frankly, the doctor and i are getting concerned about it.

Your visit was so very much a bright spot in our summer -- i would like to turn back the clock and do it again.:grouphug:

 

I'm sorry for the disappointing news. :grouphug:
awwww, thanks.:grouphug:

 

Praying, Mariann. :grouphug:

 

Sometimes the medications take a while to work, and it can be very discouraging, and then all of a sudden, something seems to click and there's a big improvement, so I'm hoping that will be the case for your dd.

 

I know that, when I had Lyme, there was a point where I thought I would never feel better, and then, not too long after that, I guess the medicine finally started to work for me. My Lyme titer tests were still nothing to write home about, but I felt a lot better, so I was better able to deal with having to stay on the medication.

 

I know that what you say is true -- and actually, that is what I am holding on to -- that the meds will work, it is just going to take longer than we thought. and you are right, there is that point in lyme's when we realize that we are going to feel worse before we feel better. I'm curious to see what her blood test results are tomorrow.:grouphug:

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Lizzie in Ma

Lizzie in Ma

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and if I thought I was maybe expecting too much as I really thought DD should be much better by now, well, the doctor agrees with me and she was not happy with the lack of progress as well.

 

So.........................we will give it another week on the two antibiotics (one of which she only began taking last week), wait for lab work that the doctor ordered today, and allow dd to have one more OMT (osteopathic manipulation technique) session on monday with the osteopathic physician...her first session this past monday has provided one of two tiny positive blips.

 

We will return one week from today/tomorrow and re-assess. Our MD is thinking that if she doesn't like the white count from dd's lab work, we may begin IV antibiotics.

 

Prayers please -- good thoughts please -- both are much appreciated.:grouphug:

 

:grouphug::grouphug:

The first 6 months on Biaxin/Plaquenil had no results for our dd. It was the doxycycline/flagyl combo that finally worked though it was brutal on her.

Praying for you all.

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MariannNOVA

MariannNOVA

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:grouphug::grouphug:

The first 6 months on Biaxin/Plaquenil had no results for our dd. It was the doxycycline/flagyl combo that finally worked though it was brutal on her.

Praying for you all.

 

That is interesting......doxy doesn't seem to be touching it, but the first dose of ceftin (with the doxy) and we saw the first and smallest amount of improvement.

 

Flagyl............that is interesting.

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gingersmom

gingersmom

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That is interesting......doxy doesn't seem to be touching it, but the first dose of ceftin (with the doxy) and we saw the first and smallest amount of improvement.

 

Flagyl............that is interesting.

 

Flagyl is seriously the most evil medicine ever. I still have nightmares about taking it.

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MariannNOVA

MariannNOVA

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Mariann, has your daughter been checked for co-infections? Sometimes results aren't seen with Lymes treatment because there are other tick borne diseases which need to be treated first.

 

I'm so scared. Dd starts treatment 9/10.

 

 

 

Hey D -- the ceftin is supposed to be hitting the co-infections - but she has barely been on that for a week. I am waiting for them to call with the lab results.

 

I know you are scared, but frankly, you and i both know that 'not knowing' and 'not treating' is even more scary.:grouphug::grouphug::grouphug:

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scooby-do

scooby-do

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My niece got lyme disease. At first they thought it was a spider bite so it went a while before she started showing symptoms. It took months until they figured out she had been bitten by a tick. She missed 3 months of school and a visiting nurse every day for the IV. I can't believe how sick she was. They even traveled to NY to see some specialists. I hope and pray that you get answers and the medications work. I know how sick someone can be with this.

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Omma

Omma

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As an aside, Flagyl was a wonder drug for me. I had contracted C-difficile from ANOTHER antibiotic (Clindomycin) that I had taken for dental issues... and had to take Flagyl for 10 days. I really liked it because I felt so much better afterwards. I guess that's why they always right that your doctor has determined that the need for such and such medicine outweighs the potential side effects. I did take a LOT of probiotics, though, at the time, which I would advise whenever antibiotics are prescribed!

 

I hope and pray that your dd starts feeling better very soon!

 

:grouphug:,

Brenda

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Tiramisu

Tiramisu

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As an aside, Flagyl was a wonder drug for me. I had contracted C-difficile from ANOTHER antibiotic (Clindomycin) that I had taken for dental issues... and had to take Flagyl for 10 days. I really liked it because I felt so much better afterwards. I guess that's why they always right that your doctor has determined that the need for such and such medicine outweighs the potential side effects. I did take a LOT of probiotics, though, at the time, which I would advise whenever antibiotics are prescribed!

 

I hope and pray that your dd starts feeling better very soon!

 

:grouphug:,

Brenda

 

Hi Omma!

 

I was another CDiff sufferer, but the two rounds of flagyl didn't keep me from relapsing, even with lots of probies. Vancomycin knocked mine out without making me feel sick. I'll be on probies for the rest of my life. :001_smile:

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MariannNOVA

MariannNOVA

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My niece got lyme disease. At first they thought it was a spider bite so it went a while before she started showing symptoms. It took months until they figured out she had been bitten by a tick. She missed 3 months of school and a visiting nurse every day for the IV. I can't believe how sick she was. They even traveled to NY to see some specialists. I hope and pray that you get answers and the medications work. I know how sick someone can be with this.

 

:grouphug: I hope your dd improves.

 

As an aside, Flagyl was a wonder drug for me. I had contracted C-difficile from ANOTHER antibiotic (Clindomycin) that I had taken for dental issues... and had to take Flagyl for 10 days. I really liked it because I felt so much better afterwards. I guess that's why they always right that your doctor has determined that the need for such and such medicine outweighs the potential side effects. I did take a LOT of probiotics, though, at the time, which I would advise whenever antibiotics are prescribed!

 

I hope and pray that your dd starts feeling better very soon!

 

:grouphug:,

Brenda

 

Hi Omma!

 

I was another CDiff sufferer, but the two rounds of flagyl didn't keep me from relapsing, even with lots of probies. Vancomycin knocked mine out without making me feel sick. I'll be on probies for the rest of my life. :001_smile:

 

Ladies -- thoughts and prayers to you and yours -- heavens -- we have all been through it, haven't we. :grouphug:

 

I will update in the original post as well: keep those prayers coming -- dd's lab work was quite good. the doctor's instructions were to keep doing what we are doing -- dd showed almost no inflammation in her sed rate, her white count was good and coming down, her cbc was good......and when i picked her up after her class today, she actually looked as if she was feeling better.

 

I am pushing water like crazy -- the doctor and i spoke with her about how important it is for her to be drinking alot of water. I also think that is making a difference. She went to the pool this afternoon (I like her to get some sun despite the doxy photo sensitivity) and she likes to get some of those foam noodles and just float -- she says it makes her joints feel so good. so, that is our plan right now. she returns to the osteopath on monday. Tonight i am thankful and relieved.:grouphug:

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MariannNOVA

MariannNOVA

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Just coming back from vacation and seeing this-Mariann, I am so sorry you're going through this AGAIN-you had enough with your older dd. You and she were so much help to me when my dd was going through her horrible Lyme fiasco. Praying for you!!! :grouphug::grouphug::grouphug:

 

 

Thank you -- you know, older dd is doing fabulously! G-d is faithful! :grouphug::grouphug::grouphug:

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Denisemomof4

Denisemomof4

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Mariann, I am sorry for the hijack. I just need to know....... (maybe I should start my own thread?)

 

Yeah, it was bad, no question.

 

why? What happened?

 

Hey D -- the ceftin is supposed to be hitting the co-infections - but she has barely been on that for a week. I am waiting for them to call with the lab results.

 

I know you are scared, but frankly, you and i both know that 'not knowing' and 'not treating' is even more scary.:grouphug::grouphug::grouphug:

 

I know. It's strange but since dd was hospitalized, she is pointing out more and more Lymes symptoms - very sore neck, sore joints one day, bad, then gone, etc. GI issues, etc. I can't wait to make some progress but I have to admit, I'm very scared for her.

 

Mariann, when I was going to meet you in DC, your son was throwing up from his Lymes treatment. Did that happen a lot? Did he have plenty of food in his belly? I plan to squeeze fresh ginger juice and mix with sparkling water and stevia... in the hopes to help her nausea. She has a very delicate GI system.

 

 

Flagyl is seriously the most evil medicine ever. I still have nightmares about taking it.

 

again, can you please share your problems with it?

 

Mariann, how long was S. treated?

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Denisemomof4

Denisemomof4

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Mariann, Just read your update. How long do you think your dd had the Lymes before treatment started? Have her joints always hurt?

 

Since you have had so many issues with Lymes in your house, are you doing any sort of preventative measures? Dogs? Yard?

 

I am so sorry I am bothering you at such a time with all my questions.

 

I am THRILLED your dd is feeling better!

 

:grouphug::grouphug::grouphug:

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Tiramisu

Tiramisu

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Ladies -- thoughts and prayers to you and yours -- heavens -- we have all been through it, haven't we. :grouphug:

 

I will update in the original post as well: keep those prayers coming -- dd's lab work was quite good. the doctor's instructions were to keep doing what we are doing -- dd showed almost no inflammation in her sed rate, her white count was good and coming down, her cbc was good......and when i picked her up after her class today, she actually looked as if she was feeling better.

 

I am pushing water like crazy -- the doctor and i spoke with her about how important it is for her to be drinking alot of water. I also think that is making a difference. She went to the pool this afternoon (I like her to get some sun despite the doxy photo sensitivity) and she likes to get some of those foam noodles and just float -- she says it makes her joints feel so good. so, that is our plan right now. she returns to the osteopath on monday. Tonight i am thankful and relieved.:grouphug:

 

Thanks for the update! What a relief! I think the lab work shows things are headed it the right direction. I'm glad she's starting to look and feel better. I'll pray that all the improvement continues.

 

:grouphug:

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MariannNOVA

MariannNOVA

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Mariann, Just read your update. How long do you think your dd had the Lymes before treatment started? Have her joints always hurt?

 

Since you have had so many issues with Lymes in your house, are you doing any sort of preventative measures? Dogs? Yard?

 

I am so sorry I am bothering you at such a time with all my questions.

 

I am THRILLED your dd is feeling better!

 

:grouphug::grouphug::grouphug:

 

Hey there, Denise: I finally had time to sit and I found all your questions.

 

I know that dd13 got this at the pool -- she had become friends with a girl who liked to sit on the lawn at the pool - up until then, we always stayed on the patio/concrete section. But, nooooooooooooooooo, this kid has to sit on the lawn. Did she get sick? no. did my kid get sick? :glare:

 

dh (who is still taking doxy) got it from the same place. 72 hours after sitting in a chair on the lawn at the pool watching a swim team slide show, he had a bullseye rash.

 

ds got sick from taking the doxycycline -- if you take it without a full stomach OR with dairy, --vomiting-2075.gif -- sorry -- couldn't resist. writing about dd's friend got me in a pissy mood.

 

anyway, there is a prescription they can give your dd if the meds really mess up her stomach. when i go upstairs, i will check the name of it and PM you with it.

 

Once i made sure that ds had a full stomach and NO DAIRY, it went much more smoothly. DD13 hasn't (knock on wood) become sick fron the doxy at all -- we are fastidious about her eating habits. She is (since all the lyme stuff started with her) gluten free, sugar free, dairy free.

 

I think she was probably sick 4-6 weeks before her treatment started. If she mentioned achiness, i probably attributed it to all the swimming she was doing on swim team. I think that maybe she did have pneumonia and that weakened her immune system and the lyme's had kind of been sitting there and once the pneumonia emerged, well, the lyme's followed. with that scenario, the 4-6 weeks thing makes sense. i also think that she was just on the cusp of becoming chronic when her tx began.

 

I will say that one of the reasons she wasn't responding well was that she definitely wasn't hydrated enough. Now, I put a 50 oz bottle of water in her hand when she opens her eyes in the morning, and I am standing there with another 50 ounce bottle when she finishes that one, and one more 50 ounce bottle when that one is gone. So, yes, i now have her drinking 100 to 150 oz of water a day. The label on her bottle of Ceftin says to drink large amounts of water with it. Until she started drinking the water, her improvement was minimal.

 

I make certain she has 2 or 3 gluten free waffles with jelly or peanut butter on them for breakfast or a PB&J sandwich for breakfast and then her meds.

 

At lunchtime, she has gluten free/dairy free lasagne or something like that (a burrito maybe), and her probiotic and multi vitamins.

 

At dinner, she is dairy free so she can take her antibiotics again -- gluten free pretzels after dinner or apples with peanut butter -- I am ALWAYS in whole foods or trader joe's or wegman's or MOM'S looking for different ideas for her to vary her menu.

 

Oh, and tonight, we started something we will do every day, once a day. She takes a tablespoon of cold pressed sesame oil - it will boost her white count.

 

She likes floating on those foam noodles in the pool - today when i got there to pick her up, an older woman also suffering from lyme's was floating next to her. The woman was so thankful that dd told her how good the floating makes you feel. The lifeguards no longer have dd leave the pool during 15 minute break when all kids under 16 must leave the pool - they told her they know she is in there for therapeutic reasons so she can stay. That just broke my heart - here is a kid who was getting ready to set time records for swim team. Her joints only began hurting right around the time we got the positive western block test.

 

We have been fragrance free, perfume free for awhile due to dd32's multiple chemical sensitivities, and i have become more aware now that dd13 has lyme's. we use all free and clear detergents, shampoos, conditioners, soaps, cleaning products, everything. You know, I thought that dd32 was taking it all a bit too far, but i see with dd13 that all of this is necessary.

 

dd32 was sick for four years before a diagnosis was made and treatment begun. It took four years of treatment for her to be fairly close to her healthy self again.

 

And, dd13 has undergone a major personality change - she was the most responsible kid you could ever meet -- really......i could take a 6 month trip around the world, leave her in charge and come back and everything would be clicking along smoothly. She has become, well, how can I say this: it's like the hamster has jumped OFF the wheel. She will be the first to tell you that her short term memory is GONE -- i remember this happening with dd32. It will come back though -- as they heal, it returns. All of a sudden she is goofy, talks about inane stuff -- she never did that before. She was like my right arm, and now i feel so alone and so upset that this has happened to her.

 

I think that's everything you asked -- as i said, we are finding that with the osteopathic physician and consuming huge amounts of water and a fanatically healthy diet, she is beginning to improve. THAT makes me think she was probably chronic and no longer acute when we finally began to treat. DS was acute and he was better without any of these other measures we have taken for dd.

 

Let me know what other questions you have. :grouphug::grouphug::grouphug:

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FaithManor

FaithManor

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Mariann/Denise/Lyme's moms, I just wanted to say that sesame oil is GOOOOD stuff. Another good one for serious immune boosting power is oregano oil.

 

Something to consider for joints is a mixture of lavender oil (true lavender, not lavendin) and eucalyptus oil...pharmaceutical grade mixed in a carrier such as almond oil...I love almond oil for this mixture. If your dd's have the achy joints, consider this too....these two oils are wonderful topical anti-inflammatories as well as muscle relaxing agents. They are literally de-stressors. My sister actually makes up this oil (she's a social worker who helps coordinate services for chronically ill children on state health insurance or whose parents make too much money to qualify for state insurance in her state and therefore need help finding pro-bono services.) and hands it out. You gently massage it into the tender, achy areas. Many of her clients say their children sleep more deeply when they've had the oil than not. You can even sprinkle a couple of drops on the pillowcase just for the aroma therapy because it's quite comforting.

 

I'd also suggest that since water therapy is real help, that you consider along with it a "mind trick". It won't take long for your dd's to figure out just how good they feel in the water and their mind will begin to equate a feeling of well being with all things water. The imagination of childhood, I think, makes alternative therapies more effective than for adults. So, try finding some recordings of gently falling water or waves...gentle ocean waves that has been dubbed over top of a nice, relaxing piece of classical music...some Mozart, Chopin, or Debussey. Play that in the house whenever they are feeling particularly ill or achy. You can even play it in the bathtub because though their bodies are not getting the benefit of floating in deep enough water to relieve pressure on the joints, their brains will still associate - especially in a bath or even just a foot soak - the sound of moving water with comfort and good feelings and this, for many children though certainly not all, will produce endorphins.

 

You can also make "feel good" hankies with geranium, bergamot, lavender, and tangerine or orange oil mixed with rose water and spritzed on a cotton hankie. Have the children carry them in their pockets and take a whiff when they suddenly begin to feel "puny", as my sister likes to put it. There is serious anxiety that goes with being chronically ill and this is an instant anxiety reliever in the short term...something to hold them over until they can hop into bed, get into the pool, bathtub, whatever happens next to help ease their pain.

 

I'm no expert for darn certain, but I did pick up a thing or two during my music therapy years from my CP students who had water therapy at the community center where I did some free music therapy in conjunction with a variety of programs. It may or may not work, but it isn't a budget breaker to try.

 

 

Faith

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MariannNOVA

MariannNOVA

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Faith -- You are a dear to share that amazing information. thank you so much -- so very much!!!!!:grouphug::grouphug::grouphug: tonight i brought dd a little tin of 'badger balm' at mom's -- for achy joints. It smells wonderful and she said it made her knee and shoulder feel so good -- you are so right about the mind/body/aromotherapy connection.

 

and i bought another tin of badger balm for 'athlete's foot' -- for dd11 and dh.:glare:

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