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Posted 7/13/2011 6:10 AM (GMT -5)
Hello,

I have written here once or twice before.  My 23 year old daughter was diagnosed with Lyme 2 1/2 years ago.  She also has some of its co-infections, like bartonella and babesi.  Not sure if that is spelled correctly.

She suffers great pain in her ribs, soles of feet, and horrible pain in her back.  She had to drop out of college 2 years ago.  Her back pain seems to be the worse which limits her ablility to do simple things like putting away dishes or folding clothes.  She is not able to exercise much because she suffers so much afterwards.  She was a such an active girl, with exercising, yoga, and cheerleading.  This has pretty much destroyed her life. 

We pray every day that God will help her.  We are seeing a Lyme doctor.  He is wonderful and understanding.  He has also had Lyme.  However my question is the blanching spots she gets on her back.  They start mid shoulder and some are larger than others. The spots are white with red around the center.  She is always hurting in these areas but if the pain is horrible the places that are white will become more prevalent because of the red jagged type circles that encase them.  When we go and see her doctor they are barely visible and he kinda just writes it off. 

I just want to know if anyone else had these spots that come and go. I am so worried about her and watching her suffer is breaking my heart.  

Thanks for any help!

Hi-Mama 

Posted 7/13/2011 6:59 AM (GMT -5)
Hello Hi-Mama,

I just googled bartonella images and saw several pictures that match your description of your daughter's rash. Take a look and see if you recognize anything.

They are rather alarming, I can see why you are stressed about them.

Perhaps the next time they appear you could take a picture to show the doctor on your next visit.

I don't know whether this is going to be of any help to you, but I'd like to share it. One of the things I love about my husband is that all through this experience with Lyme he has remained -- to the most part -- very calm about my symptoms. Even when I was falling down and having pseudo seizures he just calmly carried on and then helped me up when I was ready. This allowed me to be calm as well and I think it has helped a great deal in my getting well again.

You mentioned in your other post that you have a heart condition so you know that the stress is not good for you, and I'd like to gently tell you it isn't likely to be doing you daughter any good, either.

That doesn't mean you shouldn't care! It has to be absolute torture to watch your daughter go through this.

But it sounds like your doctor is both capable and aware, so things look good. Your daughter's youth and previous good health is on her side so take heart!
Posted 7/13/2011 7:18 AM (GMT -5)
Hi-Mama, my heart goes out to you. My LLMD tells me these tickborne illnesses require the three Ps - patience, prayer and positive thinking. Now that my husband and son have also been diagnosed, I cannot imagine what you are going through to see your daughter in pain. Please know that we are thinking with you and praying that your daughter is feeling a little better each day.
Posted 7/13/2011 12:14 PM (GMT -5)
Thank you Achieving Grace and Spring Jeans.

If you find anything out on the blanching spots I talked about in another post please let me know.

Achieving Grace, you are so right about the heart thing. My sweet daughter gets very upset when she sees that I am under great stress and crying. I try my best not to show it. I went to the doctor yesterday and she prescribed and anxiety med. I hope that it will kick in soon.
I know that I need to be strong and positive for her.

We do pray a lot around here. As I am sure most of you do. Prayer is our only hope of getting well. I just get discouraged sometimes ..Especially when she is not able to do anything, not even take a walk because the back pain is so great.

Thank to you all!
Hi-Mama
Posted 7/13/2011 2:02 PM (GMT -5)
Hang in there Hi-Mama! This is not a fast race to get to the end - even though we are all desperate to get there!! Slow and steady wins this race.

We can all certainly sympathize with you, watching your daughter be so ill!! We can also help you to understand what might be going on if you feel like you need help understanding - as we have been through a lot of this stuff ourselves.

How long has your daughter been in treatment? Is she detoxing, dry skin brushing and drinking plenty of lemon water? These are things that are quite important while trying to heal from these infections. Not doing these things can actually make getting through these treatments (and the infections) harder. Here is an article explaining this, written by a well-known LLMD, Dr. David Jernigan:findarticles.com/p/articles/mi_m0ISW/is_285/ai_n19170382/?tag=content;col1
Posted 7/13/2011 4:09 PM (GMT -5)
Hi Traveler,

Yes she detoxes several times a week.  She follows the protocol you guys have listed here.  It does help her.  I guess I am just so worried because she has taken a turn for the worse lately.  I just don't want her to end up with ALS.

Do you know if many of the lyme with its co-infections have lots of unbearable back pain? (her back pain keeps her for doing almost anything) Just knowing this would be of some help?  If anyone knows please let me know so I can calm down just a bit.

She has been in seeing a LLMD for a little more than 2 years now.  He is wonderful.  However were seeing his assistant for the first 2 years now we are finally able to see him.  She has been seeing him for 3 months.  He just recently put her on malerone, bactrum, and levaquin.

Thanks for being so kind and helpful! It is much appreciated!

Hi-Mama

Posted 7/13/2011 4:26 PM (GMT -5)
I in no way want to second guess your LLMD, but you might ask about the possibility that your daughter has hit a plateau because of other tick-borne infections that she may be carrying.

I used to have terrible back spasms. It would feel like all of the muscles would just freeze up! It was incredibly painful, but I'm not sure which infection causes this type of symptom. I also used to get cramps in the muscles that run right down the center of my back, right along either side of my spine. Those were terribly horrid as well.

I have had my infections for up to 40 years, depending on exactly when I was infected with which each of the infections I carry. I had RMSF when I was either 5 or 7 years old to start me on my way. Hopefully, as horrid as it may seem right now, your LLMD is aware of all of the complications that can arise in treatment and this will all be taken care of shortly.

Please do try to take it easy - as the other mods have said - this stress isn't good for you. Your daughter needs you to take good care of yourself right now, and we need you to take good care of yourself so that we can read your posts and offer suggestions!!!
Posted 7/13/2011 5:25 PM (GMT -5)
Thanks Traveler,

Yes he believes she has 2 other co-infections that is why she is on 3 different antibiotics.  She cried and cried when she saw him last week.  He was very sympathetic and took up a lot of time with her.  This is her first time to try so many antibiotics at the same time.  So hopefully this will be of some help.  The pharmacist had to order the malerone so she has only been on it for 2 days.  We are praying to see some improvement.

 

Your past back issues really describes some of my daughters.  She has muscle cramps on both sides of her spine.  Sometimes I can see the muscles so swollen and jumping!  She says the same thing about her back freezing up.  She tells me sometimes she is afraid if she moves the wrong way something is going to rip apart. I guess because the muscles are so tight. 

 

She also gets stabbing pains in her ribs and shoulder blades?  Do you or did you have that problem also?  I know I am driving you crazy, I am just desperate to find her some help. 

 

With many thanks

Hi-Mama

Posted 7/13/2011 5:33 PM (GMT -5)
Hi-Mama,

I had the rib pain, shoulder blade stabbing pain as well as the back pain and spasms. I am approaching the end of my treatment now and the back pain is almost 90 percent gone. and the rib pain completely gone. My back mostly crunches and cracks now which can be disorienting but doesn't stop me from doing anything.

Malarone is a very effective medicine and it sounds as if your doctor has things well in hand. I am sure you want all of this to go away -- like three years ago! I know I hit a low point before my doctor switched up the treatment and then I really felt I turned the corner and started improving in leaps and bounds. I hope your daughter is just about to get to that point with her new treatment.

Take care.
Posted 7/13/2011 6:18 PM (GMT -5)
   God bless all of you!!

You have all made me feel so much better!  I will pray for all of you 2night and thank the good Lord for telling me to get on here and reach out to someone today!

Thanks so much!! :-)

Hi-Mama

Posted 7/14/2011 2:26 PM (GMT -5)
Don't forget to come here often, as things are always changing, not only with our symptoms, but here on the forum also!!! It's never hard to remember the fear that no one would/could help me during a few different times, and don't want others to experience that any more than can be helped! My activities here really make me feel like I am able to make a difference when someone feels helped here!

Although, what make this such an awesome site is our members...all of them! They come together to make such a huge support group!!! Lots of minds working on a problem is always better than only a few!!
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