Seeking information for daughter with Lyme

If she had a positive ELISA and Positive Western Blot, especially a CDC positive, she DEFINITELY has Lyme Disease! More often than not, the ELISA gives a false negative, so a positive ELISA strongly points to Lyme. The ATG, AGG doesn't really mean anything in regards to Lyme. If one is positive, she has it.

I'm not sure if you've read about Lyme treatment and the controversy of it? Infectious disease Drs. follow narrow treatment guidelines and typically short-term abx. treatment, which is not enough to eliminate or put a long-term infection into remission. Then, there are LLMDS (Lyme Literate MDs) that follow ILADS guidelines and believe patients should be treated until symptoms are gone or much improved. They are much more well-versed in Lyme and Lyme co-infections. They have extensive training and experience treating Lyme patients.

You can find more info. on the "new to lyme" thread on this forum.

Traveler is a moderator on here. I believe that she had given me names of some LLMDs in MI in the past. I can't find the e-mail now, but she may be able to provide them to you.

I live in Ohio. I am seeing a LLMD that is in the Indianapolis area that is very good and she has treated children. I really like her and she's very knowledgeable! I'm not sure how far of a drive that would be for you? I can give you her name if you're interested. If so, I will PM you. Due to the controversy over Lyme treatment, any LLMDs names need to be sent through private message.

FYI-I have severe muscle pain and looking back, that was one of my first symptoms. It is often a symptom of a lyme co-infection called Bartonella, which requires different abx. treatment than the treatment for the Lyme bacteria.

I'm sorry that your daughter has this, but she is lucky to have a mother like you that has researched and looking for treatment. The healing process can be long and slow, but she can heal.

LLMDs often have a long wait. In the meantime, starting Amoxycillin may be a good idea. Also, detoxing (which helps kill the bacteria and gets rid of the toxins that are released when the bacteria dies) and boosting her immune system will be very helpful. Something simple to start is Epsom Saly/Hydrogen Peroxide foot baths and then full baths. More info. is on the "new to lyme" thread. Just start slowly because detoxing can initially cause herxing (flare of symptoms as the Lyme dies off). I wish you the best!

Thanks so much for taking time with such a thorough response. I am going to look into the link you provided and will also strongly consider having my daughter start the antibiotic. Her symptoms as of late definitely seem to be worsening and she's ready to try something for some relief. I'm aware of the importance of detoxing based on some past health challenges so I will make that a priority for sure. Again, thanks.

Mystery Illness,
I have one more quick question. Do you have any idea how to explain the fact that my daughter's symptoms have been present for so long and yet, the IgG was the test that came back negative? As I understand it, that test should show a positive result in cases where the individual has had the bacteria for an extended period of time. Is that likely one of those false negatives that seem to be quite common with this disorder?

Worriedmom22

Justascarf,
I sure appreciate your supportive words. I'm really scared right now about what my daughter might have to struggle with given her recent diagnosis. Like you, she's athletic and one of her dreams is to earn a scholarship and play college soccer. It sounds like you and so many others have lost a lot to this disease and are living with chronic health problems. I wish that could be avoided for my daughter but it's clear there are just no guarantees with this one.

You didn't happen to mention whether you seek treatment with a LLMD. Do you mind sharing about your experience with any treatment that was more helpful than others?

Hey Concerned -
I do know that personally it was difficult for me to continue to be a competitive athlete with Lyme. I didn't know what Lyme was at the time, but I was a really good swimmer. My fellow team mates and one of my biggest rivals (a multiple gold medal winner) went on to compete in the Atlanta Olympics and my coach was an Olympic swim coach for the National team and so I got to train with some of the best swimmers out there. So I understand the competitive sports. I was training to be there and I had a great shot.

I did go on after quitting swimming, and picked up rowing. I went that route because I couldn't be away from the water and sports. My rowing partner and I went on to qualify for the Olympic trials but 3 weeks before the trials I caught mono. So that was the end of it all for me and unfortunately for my rowing partner of 2 years. To be honest, each of these events made me stronger and made me the person I am today. I can honestly say I wouldn't change a thing. I know that had my swimming gone forward I would never have gone to the college where I did, dropped out due to being sick, moved home, met my husband, gotten married and had a wonderful kid. I have never swayed on this one. A lot of my life wouldn't be what it is and the people in my life wouldn't be here. I'm pretty lucky.

As for being treated, I am currently being treated by an LLMD. He is good and has been very helpful and receptive. I like him because he believes that we need to have antibiotics but he is huge into homeopathic medicines. He is a wealth of knowledge. He'll ask me about something that I've never mentioned because my list is long and I just assumed that this was just life. He then tells me that this is common with people with long term lyme and he gives me stuff that helps with it. So it's exciting that he knows me so well.

The biggest struggle with me has been detoxing. It's not surprising after having this for so long. I can't do the baths or the foot baths very often. I have found that my best detoxing options have been high doses of Vitamin C and the FIR sauna. I ended up buying a portable one and am liking it. I have had lots of ups and downs of symptoms over the past 8 months with this doctor. In January I will have been treated (by my first doc for 4 months) for a total of 12 months. I still have at least another 12-14 months likely to go. I am only pulsing antibiotics now but I hope to be able to detox enough that I am able to do more soon.

To share with you the types of things I am currently doing, I am on doxy and rafamphin (sp?). I take it M,W,F. I take diflucan T,Th,Sat. I also take Samento, Banderol, lots of probiotics and I eat kefir. I follow a gluten, dairy, yeast, sugar, nightshade free diet. I have been pretty good at sticking to it. When I go off of it I struggle and my symptoms flare. I am on s-acetyl glutathione, fish oil, phoschol, gaba for anxiety, opti cleanse, d-ribose, LDN, T3, Iron Glyconate, Magnesium Oil, and then I take a whole bunch of homeopathics for cell health, lymph drainage, female hormone balancing and hormone receptor help. I take a lot less then what I did before. I think that some stuff is much better, some stuff is still there and more of a struggle. The biggest challenge for me is that I never know what symptoms are going to plague me the most for any given day. That's the worst part and sometimes my anxiety gets the best of me.

Having something to fight for is what keeps me going. For me it's my daughter and husband and my life. For your daughter it may be her friends and family and soccer and life! I do know that during treatment I had to back off of exercise. I've gotten really into yoga. If she doesn't do that now, it may prove to be really good for her but also great ultimately for her soccer. My brother was a big time soccer player and he often says that he wished he had done yoga when he played as he would have been even better.

There is a professional tennis player, Sam Stosur from Australia. She caught lyme in Europe and got really sick. She only had it for a short period of time but she has a blog where she recorded her struggles and triumphs. It may be worth pointing your daughter to. She had to basically completely stop her career in tennis. She was limited to practically no working out. I believe that a year or two after going through treatment, she ended up winning the US open. She's an amazing tennis player. http://samstosur.com/news/my-battle-with-lyme-disease/

I hope this helps. Feel free to ask me more. I'm just now getting to a point in my treatment that I am getting better enough to be able to share. I remember what it was like to be sick in highschool. I wasn't a woe is me kid so I just fought through it. I also don't know how excited I would have been had I been told I had to eat a crummy diet! I just know that though things will likely get worse, I'm to a point that if someone handed me a card and told me that the cure to lyme is to learn to jump rope while balancing only on my head, I'd figure out how to do that. The potential of no more pain and good days ahead is too enticing. I hope she too will feel that way. There is a national support phone call for teens and college aged kids. I can't remember how old she is but that might be a a good way to get her engaged in her treatment along with other kids her age. Good luck!

Hi ConcernedMom!
You chose a great screen name, as your questions show that you are!! Welcome to our forum! As you can see, we have a lot of really great members here that are willing to share info and stories to help you and your daughter understand what's going on. I am so very sorry that your daughter is going through this! I know how hard it's been on my Mom, as I was first ill with Rocky Mountain Spotted Fever at the age of 7 and have been ill off and on up until the last 15 years where it was a steady decline.

If you haven't already, please do read through the "New to Lyme? Start here!" thread that sits at the top of the forum. It's packed full of really great information, symptom lists (as Lyme rarely travels alone!!), informative links and pdf's, along with a great list of questions to ask any doctor that you may seek treatment from!!

If you would like the info on the LLMD in Michigan, please email me, as we don't allow the LLMD's info to be posted here for a number of reasons, one of which is to protect them. Depending on where in Michigan you are located, I may have other suggestions as well. You don't have to give me, or anyone else your exact location (we would rather you don't!), but just the general area.

I would like to encourage you to visit another site, and one for your daughter as well - but don't leave us!!! The one I would suggest for you is "Lyme Spouse" (www.lymespouse.org/)
- it's a site dedicated to helping those who have loved ones that are infected with these infections to understand what it is that we are going through and to help you understand why we do some of the things we do.

The one for your daughter - Lymeteens (www.lymeteens.socialgo.com/) is just that - a social site for teens that have these diseases! We find it's important for each of us to know that we aren't alone in this and to be able to talk with those that have been through the same things.

There are all kinds of choices that you and your daughter will be making, and you can feel free to explore them here, ask for opinions, and we have a great search function that if you enter the word Lyme first in the search box, will return all the threads where your terms are mentioned in relation to this forum.

I'm so glad that you found us!!

There are many types of rashes that can appear when a person has these diseases.

Here is a link to some good photos of Lyme rashes, and there are links at the bottom of the page to photos of other tick-borne infection rashes that you can go over as well.
/sites.google.com/site/drjoneskids/rash-photos

This is not the only place to find good photos, as there are many manifestations, but it's a good place to start!