It has taken me awhile but I have come to realize we (myself, Hannah and Samuel) all have lyme. Not just Dominic like we thought.

As some of ya'll know Dominic was dx with lyme May 2003 by Dr. C. after being very sick since Jan 2003. At this time Dominic getting better was my main concern.

In Oct 2003 i started re-read the info I filled out on Dominic in May and it sent a chill down my spine. On Dr C's symp list I had more symp then Dominic did (looking back in my 20's).

In Feb 2004 when we saw Dr. C for a emergency trip (Dominic started with seizures and neuro stuff). I spoke to him about what I suspected.

He told me to fill out two symp. list one for my 20's when I was at my sickest and one now (I just turned 34). All I can say is OH MY GOD!!!

I have well over 50/60 checks but what is amazing things that were giving me problems in my 20's aren't there anymore and now it is more neuro/muscular if that makes since.

In May 2004 I had Samuel (2 yrs old) tested (he was having routien b/w so the ped agreed to test). He only had band 41 postive. At first I believed he had no symptoms...but now after really thinking with an open mind he does have a few.

Hannah is 4 and has not been tested yet, besides for "weird rashes" she doesn't seem to have any symp. She only gets these rashes after trips when we stay in hotels so I think it could be the detergent the sheets are washed with.

I saw my regular family Dr and asked him for a western blot he refused. Said there is no reason there are no ticks in Louisiana...Yeah right!!! He told me I need to re-think about what I am doing to Dominic..NOT.

I told him it was closed minded quacks like him that almost killed Dominic and the only thing I needed to re-think was who was going to be my new family dr.

I am seeing my ob-gyn in two weeks and I am going to see if she will do the test. I have an appt with Dr. C in Oct for Dominic and Myself. I am going to call to see if we can add Samuel too.

My ob-gyn shares the building with the kids peditrician and if she refuses I will ask the ped. to talk to her.

Now as for Hannah I don't know what to do. She is not sickly. She only sees the Dr. for wellness and after a weekend in Biloxi MS she had a bladder infection. Guessing that was from swimming all weekend.

I can honestly say she has no symp. so I don't know if she should be tested/treated or not. Very confused over her.

I am getting some heat from extended family that I won't be happy until we all have lyme or that I am doing it for attention.
As most of ya'll know this is so not true.

My husband tells me whatever I think is best do it but I tell him it would be nice if he helped decide. He tells me he supports anything I decide but I told him that is putting it all on my shoulders and it isn't fair.

I have been speaking to lots of people about lyme and "spreading the word" and amazingly it is getting out there.

My vet called me to see if I could give him more info. He is finding more tick on dogs and he can't believe it. I gave him 50 brouchers I ordered.

Even the JW that comes knock on my door told me she was talking about Dominic and has found there are alot of people that "had" lyme. She asked if it would be ok to give out my name and number if someone needed it.

My ped. told me yell it from the roof tops don't be scared if you help one person out of a thousand it is that one that counts.

Sorry I rambled on so much, just alot to think about and figure out.

Lymenet and all them members Thanks for being there so when someone is down we know where to go to "vent" or "think" out our problems to people who really know what we are going through.

Thanks
Starr

I'm sorry for all this. This is not an easy realization to have to come to terms with.

In looking at it the way I have come to, I see that Dominic was your messenger..and that you're strenghth and dilligence as a Mother has not only delivered him to recovery, but has perhaps done the same for you and the rest of your family.

Now you know, and the only way from here is up and onward to feeling better for you, and making the very best informed decisions for your children.

You have one of the best Docs around to help you do that, and you know so much now.

While I understand how daunting this is right now, and I wish you did not have to take this on on top of all you have been through over the past year..

At the same time I am relieved that you know much more about what you may be up against.

In very difficult situations like this..no matter what the situation..

..the only way out is through.

So once you can come to terms, follow your own path straight through. Between you and Doc C..the end result will be feeling better in ways you will understand further as you take the layers off, one by one.
He can help you also to figure whether your daughter would benefit from treatment, or if it is better to let her immune system fight at this point. You could even consider him having a consult with Doc J on that, with the results of certain blood testing and the WB (Igenex is best for that)..

Never let the extended family sway you in any way. Always remember that even if they are intending in your best interests, they cannot possibly have an understanding of the illnesses you must consider here, and therefore their advise is of no help to you or the children. I just say "thank you very much, I'll consider that"..and move on..

Or, you can simply say you have allot on your shoulders in addressing these issues with your specialists, so you don't need medical advise..you just need help. If they can then offer real help..take it..if it comes with judgement, leave it..because that does not serve you right now. You must stay focused on the health and welfare of your family. Consider anything less than non-judgemental support an obstacle, bypass it..

Hey..another tactic, that we shouldn't have to use..but is accurate and seems to remove the stigma you are already experiencing is to take the word "Lyme" out of your communications with people who get wrongly stuck on it..you can say Lyme is just one factor..using the terms "Tick-borne disease..chronic bacterial infection..infection induced hypoperfusion to the brain..stealth pathogens..symptoms that respond to antibiotic therapies..
mico-bacterium, micro-organisms..multiple disease agents, ect.".. these terms change the atmosphere right quick. Using the term "Lyme" puts up road blocks..but these other aspects (which are totally applicable) take that away when you need to garner much needed support, in many areas of your life..
including friends and family.

As for your husband..I think I know exactly what you are saying, and I know that you really could use some pro-active partnership right now and I too have rightfully felt I should have nothing but that..but on the other hand, he is trusting your judgement at this juncture.

You could forge ahead, and keep letting him know what you need..and informing him along the way until he is able to meet you there. This is something that many people have difficulty understanding without being fully educated. This can't be your focus because your energy is sorely needed in other areas..but time and forward movement could bring him around to a perspective that is more in tune with yours. (And informative Doc visits!)

You have my well wishes, and my friendship whenever you need it.

Mo

Hello,
The heartfelt comments you sent to beach4so was in my opinion, pure gold!
You are an excellent counselor, a lot of wisdom in those words, in my humble opinion.
BTW, I have a sister living in Louisiana who God gave to me as my messenger of hope. She is struggling in her Lyme healing after years of several misdiagnoses. Her son & daughter as well... So, La. isn't unaffected or is anywhere?
There is such a wealth of good advice, honorable intentions with so many good people offering the best they have to give. Chronic illness has its rewards in the outpouring of concern for the well being of others, this is the best that comes from afflictions. Pollyannish or not, this is what helps folks get better.

I am sending up prayers for you and your family. Sorry to hear that you think yourself and your other children may have lyme as well.

You have been a warrior in your quest to get Dominic diagnosed and treated and I know you can get through this latest road block as well!!!.

As you know myself and 2 children all have lyme and my husband was tentatively diagnosed about a month ago...so I know what you mean about the unthoughtful comments from friends, family and doctors.....

We too went through this as well, until people started to see how well Derek was doing and that Mikayla hasn't had a vomiting episode in almost a year after starting antibiotics...

So when you all start feeling better, I have a feeling those doubting Thomas's will be coming around with their heads hanging.

About the testing, will Dominic's LLMD order the test for all of you? Or maybe he could call your doc and explain why he thinks you need the testing?

I know when I first suspected Derek of having lyme, his doctor was reluctant to order it, but after my LLMD called him and educated him a little on the disease he did order the test.

I have a picture of your 3 sweeties right here on my desk,as a reminder to my family that Angels here on earth truly do exist.

You all have done so much for us and we truly value your support and friendship. If there is anything I can do, just let me know..

And I'm always there to listen, write or call me anytime!!!

You've been through so much already, but, then, too, this doesnt' suprise me.

This is happening to my family now, my daughter, and, her two little ones, 1 and 7 year olds. They all have positive bands specific for Borrelia and the 7 y/o has a CDC positive test as I do too.

We are all making the trip to MO for our August 30th appointment. My daughter, I believe, will not be taking them back to their Peditriction, as he would not treat even with a positive.

They are now seeing my local PCP until we see Dr. C later this month...he has them all on abx until then. Lucky for us that he believes in LD.

He, my PCP, even said to me on one of our visits to him, "It wouldn't suprise me that everyone or almost everyone dx with Fibromyalgia really has Lyme."

He's amazing and really wants to help and respects that we see Dr. C and is glad to do, locally, any of the other tests that Dr. C has us do.

Let us know how it goes with the rest of you guys...it's really a family afair now.

Remember how sick Dominic was and just how much Dr. C has helped him. You are in the best of hands.

Thinking about all of you and your family.

We have weather like up in Missouri,
needless to say we have been outside. Cleaning up mostly incase one of the hurricanes decide to come visit.

Anyway, MO and Missy ya'll brought me to tears with ya'll post. I can honestly say I felt like I was getting hugs as I read them.

MO I love your saying "The only way out is through" It is posted on my desk and I will read it often.

Weeza3 you are right these guys are the greatest at giving out advise and support.

Rosemary I am just really getting settled from a month in MO and I must say You made such a beautiful bride. Congradulations and all the happiness with your marriage.

And I agree we have one of the greatest Dr's.

Amanda I admire you so much. I pray for your family and your husbands safe return. I have read some of your other post and think your looking in on my life, I totally understand.

Best of luck with Dr. C he is the greatest. I am already making a list of things I want to cover with him in Oct.

Hello, I just wanted to tell you that we will be praying for you and your family.

We have a great understanding of your circumstances as my entire family has been diagnosed in the last few months.

Our 10 month old daughter has no visable symptoms at all. Our 3 year old has very few but our 5 year old has several.

We agreed to have them tested after we realized that both my husband and I had lyme prior to their birth.

We have not told his family the results yet as I know they may be difficult. There are several loving but duck-educated medical professionals in his family.

I am trying to prepare myself with knowledge prior to telling the family. I am also praying that they will understand how important it is to treat this disease even when it appears silent.

My family will be seeing Dr. C in Sept. I am trusting him to do the best he can for all of us.

Talk to his nurses. I believe they may be able to offer some help to you. They have been wonderful with us.

I am SC's Mom and we feel your pain and can relate to your dilemma. Not only do my daughter and her entire family have Lyme, but I and her 14-year-old brother do, as well.

Dr. C has been an answer to prayer, as many of you know. From reading posts, I see that more and more children are being diagnosed and going his way.

It is my prayer that God will increase him in knowledge and wisdom. The Lord is definitely working through him.