Daughter just diagnosed

What were the circumstances of her discovery and diagnosis? Did she find a tick and a rash and get treated immediately...or had she been sick for a while?

I ask because it does make a difference. I have a friend who has twice found a tick, a rash and had flu-like symptoms. He was treated with 30 days of antibiotics each time, and has recovered without one single recurring symptom or problem. I have heard of many similar situations from other folks as well. My own mother has found a tick, a rash, but nothing else. She tested negative for Lyme and has never had a symptom.

Now, if she has been sick a while and gone through the treatment you describe, then that is a different story and cannot be sorted in to a nice neat column. Each person is different.

Oh, and what kind of doctor has been treating her? I'm asking this because it is interesting and potentially helpful to others out here.

So if you don't mind sharing a little more information, I'll toss some back at you afterwards...as probably will many of our friends here.

I hope your daughter is doing well.

Tom

It sounds like it was an early catch, so it would seem the 30 days would take care of it. That is why the doctor told you she would always have it, I'm sure, because he was just following the treatment standard of mainstream medicine. The Infectious Disease Society of America put out a letter last year that basically said 30 days is the treatment and the cure for Lyme...that there is no such thing as chronic Lyme...but there is a post Lyme disease syndrome. One of the authors of the letter went as far as to say that once the treatment is over, the patient must accept that they have a chronic condition that cannot be treated and just deal with it.

This is what concerns me about what your doctor said. It sounds like he was kind of supporting that thought?

So you have choices, no doubt. You can accept what the doc says, and watch your daughter for any further symptoms. Unfortunately, there are quite a few of them. Or, you can find what is called a Lyme Literate Doctor (LLMD), and follow-up on the situation.

But, this can be a slippery slope as well. A lot of them do not accept insurance, so you have to be prepared to pay up front...for everything...and get reimbursed by insurance for what you can. You are in CT, home of Lyme disease, as it is. You should have a number of LLMDs within reasonable driving distance. I think you also have fairly good reimbursement rates in your state as well.

As a first step, I would suggest going to a web site called ILADS. They have a lot of information on there and links that can take you to a doctor search, I believe.

Read what the site says, talk with your daughter and see how she feels about it as well. Information is power, so it can't hurt just to read up on things. It has been a very valuable source of information for me.

I'm no expert on things, but my wife is an RN and has really immersed herself in to everything she can read about Lyme and co-infections. We don't blindly accept all that the Lyme Literate community says, because it's healthy to have a little doubt. We certainly doubt what the IDSA said about treatment for Lyme, but we are not as angry with them as most in the community are. These people are healers as well, so they deserve some respect for their views.

The CDC has clearly stated that the tests for Lyme are not 100% accurate and reliable, so a clinical diagnosis for Lyme is necessary. However, they will not accept a clinical diagnosis as a positive Lyme test.

Feel like you are on a roller coaster yet? Welcome to the world of Lyme Disease.

Read, learn and make as informed a decision as you can at this point. That is my suggestion.

I would like to hear what you decided, if you would like to share more as things progress for you daughter. You can put your thoughts here, or feel free to send a PM (private message).

Good luck to you and your daughter. Be well.

Tom

be careful despite it being Lyme country Yale has a lot of political pull in the state and many who say theyre knowledgable really arent...plus there are a number of them who try to pull patients from ILADS types..its a mess and we are the ping pong balls

Id suggest contacting a support group and ask them for a list of Drs and most important a list of whom to avoid--especially in Ct!!!

you can find groups in www.lymediseaseassociation.org and also google "Ct lyme disease support groups" there are MANY in your state!!

also I agree that the main criteria for treating and for how long is symptoms!!!

many do clear the bacteria easily, many do use the abx efficiently and their immune systems seem to take care of the rest!! others unfortunately have harder times and more chronic issues.then there are the few like my son who go for YEARS without sx and find out later there was much hidden damage going on and by the time we found it it was very late and we are playing catch up but not gaining ground!!

You should also have her tested for coinfections-- many these cause more problems than the Lyme!!! there are many now : Babesia, Anaplasmas ( was called HGE and HME), mycoplasma, Bartonella, Tularemia,etc--ILADS and LDA will have the inclusive lists.

as for IDSA I am not "angry" with them only aghast at their unwillingness to publicly post a more balanced view--there have been dozens of good studies proving peristence of infection AFTER the 30 day treatments. Good studies now shpwing that longer tretaments are helping many. and yet these are conveniently left out of their reports. I would mind less if they were openly admitted to even with a critique ( for example saying the study wasnt valid for a reason) but instead there is a glaring absence of such studies,

this leads me to mistrust them and their agenda. But Im funny that way--when all studies arent used, and it "looks" biased I tend to feel that chances are good its biased.

Only a balanced and experienced health professional can help you sort it out, and maybe working with a good alternatives Health professioanl as well--keep her nutritional status up..etc

good luck

Finette

I removed my tick on July 22, 2007 and become sick 8 days later. I was put on abx for over 30 days, did nothing for me. Had to go off until Oct, back on from Oct 16th to Dec 16th, had to go off once again due to allergies. I have been on nothing since.

I still have bad days but I also have good days. If I'm under a lot of stress it makes me have bad days, but once my stress is over and done with, I'm as good a gold.

My family doctor is treating me and I love him to death, he is a wonderful man, very understanding of lyme and will do anything to make me the person I was before July 22nd.

I wish you the best of luck, and your daughter will get well, and be the same person she once was, it just might take some time. Try and keep the positive going...

Julie

None of us claim to be experts, but we know that sharing is the most important thing. You never know when that one small piece of information is going to put you on the right path. It is my sincere hope that your daughter finds that path and restored health as well.

I don't know about anyone else, but despite the fact that I am still fighting this thing and feeling pretty bad most of the time, I get totally THRILLED at the success stories! Yahoo for anyone that beats this thing back!

I look forward to good news from you in the future.

Tom

It does sound like an early catch of the disease, (I hope so). Supposedly if you 'catch' and treat the disease early, the chance of a full recovery is pretty good. However, I am leary of that statement. I have heard of people being treated early and still get chronic lyme (immediately or somewhere down the road). I don't mean to sound like a 'Debbie Downer' at all! Just be alert to your daughter's symptoms and be familiar with the ins and outs of lyme and coinfections. That way, if Lyme raises his ugly head again, you'll know what to do.

Does anyone know if Lyme can be eradicated? I'm Not sure, but it certainly can be made to go into remission. How old is your daughter? Make sure she knows how to eat well and keep her immune system strong so that her body can 'take care of business' the way God designed us.

How is your daughter feeling now? Did she/is she taking probiotics? After that length of time on antbiotics, probiotics are a good choice to help restore the 'good bacteria' in the digestive tract. I still take probiotics.

I started 'treatment' for Lyme and several coinfections in March of 2007. However, mine was misdiagnosed for about 18 years. I didn't get as bad off as some people here, but it was bad enough for me to consider suicide or at least for God to finish this asap (the clobbering migraines every single flipping day for months and months on end, the pain in my spine and neck, the brain fog, the chills, the arthritis, the nightmares, etc...everyone here knows what I'm talking about and the frustration with docs who kept telling me that I just had FM and to get used to it)

Anyway, by October of 2007 I was soooooo much better. Now, I am reclaiming my life and back to jogging. It is so freeing to be able to run again.

I always took good care of myself, maybe that's why it took so long to get so sick . Who knows? Having three babies probably put a strain on the ole immune system, because after each baby, I got sicker and sicker. I don't know, but I do think a strong immune system is key to staying recovered. Also, keeping toxins out of the body (less of a burden for someone with impaired immunity) is a good idea. Personally, I switched everything....went to mineral makeup, all natural soaps, lotions, fresh organic fruits and veggies, no artificial stuff..(They market Splenda as a natural sweetener...it is NOT...I use Stevia, it is natural(for real). That's just what I do and I feel so much better. So, perhaps seeing a naturopathic doctor to test her immunity and to rebuild her immunity, if necessary, would be benenficial.

I do hope you have seen the last of this and I wish you and your family the very best. Please keep us posted.

And when you have time, I ask again: Is your daughter symptom free?

Connie

as for treatment going, I don't agree with your doc. This disease has ruined my life. I wouldn't take anything about it lightly. Good news here is she caught it early, she's young, she's in good shape (I'm assuming being an althelete), so her OWN body can do a lot of the work here.

on thing, DO NOT let her do any courses of steroids, this will supress her immune system, can release dormant viruses, as it has in me, and let me tell you, you dont know pain until you have active viruses destroying the inside of your body on top of LD.

the "rule of thumb" is to treat until symptom free plus 2 months. Meaning at least 3 months of treatment.

If you need a LLMD let me know, shoot me a pm.

in good health,

jaime