I have had Lyme for 4 years was infected in Northern, Virginia but was not diagnosed until Sept. 2003. I still have not had any treatment becasue I have no access to LLMD here in the Atlanta, Georgia area (ironically the home of the CDC but we all know the story behind them). Anyway, I have many neuro symptoms (heightened hearing, tingling and itching all over, pain all over, dizziness, forgetfullness, nubness at times, irritbility and sleep troubles) fortunaltely I am managing it pretty well at this time. My fear is that I will begin some course of treatment and it will all get worse and I won't be able to manage anymore. I have three children and a husband to take care of. If I am maintaining now I don't want to send myself into a downward spiral. Any feedback is appreciated.
Hillary
Iam new to this as well and yes treatment might put you down for a whie but no treatment might result in greater consequences later. Maybe your husband or other family members,church folks and friends can help with the kids. It is hard to juggle no doubt. You really have to think of treatment as better in the long run.
Are you stable? or are you becoming progressively worse? My brother has Lyme and has had it 12 years. He has refused to do anything about it. He says he can handle the symptoms and would rather deal with them than going on ABX. His symptoms are not severe.
If yor stable then maybe now is not the time for treatment. ( I am nt a Dr. But I think sooner is better). Just my opinion, but I started to treat as soon as I knew what I had. I am not in the husband and kids situation so it may be easier for me. Still, this is YOUR health and it is VERY IMPORTANT!
Please take care of yourself.....in the long term that's what is in the best interest of your children and your husband.
Peace and Health,
robi
You're fortunate that your immune system is "handling it rather well at this time."
The key words here are "at this time."
With such a burden, there's no way of knowing when your immune system will reach the point that it won't be able to handle it anymore. If you start that downward spiral, it becomes more difficult to treat Lyme.
Don't want to sound nosey, but a little more info would be helpful.
Answers are optional - NOT required.
How & where were you diagnosed?
...by lab results?
You said you've had LD 4 yrs - did you have a bull's eye rash or other symptoms at that time?
Were you checked for co-infections like Babesiosis, Ehrlichiosis, Bartonella?
How old are your children?
Is there a local dr who would agree to work with a LLMD so you wouldn't have to travel very often?
It would be a great opportunity for him/her to learn about Tick-Borne Diseases (TBDs) from an expert.
I'm not a dr, but in my opinion, BECAUSE you have a husband & 3 children, I recommend that you see a LLMD for an evaluation - ASAP.
The sooner treatment is started, the better the results, but only if treatment is adequate.
The people here on LymeNet will do everything possible to help you through any difficult times.
You can do this.
I was more afraid of not being around for my children or being here and being altered/disabled by this disease...and not being able to be the mom I wanted to be.
Life gets in the way. I wouldn't wish the last six years of lyme treatment on my kids, but they sure have learned a lot of remarkable lessons and skills as a result.
My daughter just won an award for doing lyme outer cell protein research for AP Biology with Igenex labs. She's a junior in high school. She spread the truth about lyme to a lot of incredibly bright kids and teachers. A researcher from Igenex came to her presentation, her mentor, and was asked loads of questions by kids, teachers and parents.
My daughter is amazing!
And it's because her mom has lyme...she did this because of her years of living with her mom's lyme. So good can come from adversity....
Do what you need to do to get well. Your family deserves to have a healthy you. If you had any other serious, more public disease like ovarian or breast cancer wouldn't you do whatever you could to get well, to be here for yourself and your family? I would
It's worth it. Get tested for the co infections without doubt...go to N. Carolina to see Dr. J if you have to. It's worth it...not easy, but worth it...
Carol Ann
Not to scare you - but you are in a downward spiral, dear, even though you may not know it. You already have symptoms of full-blown neurological involvement. The spirochetes are in your brain and are not dormant.
Without treatment there will very likely come a time, and nobody can say when, when you cannot 'manage' it; you won't be able to function well enough to take care of yourself, let alone your family.
But if you get proper treatment, soon enough, things can get progressively better instead of worse. There may be rough times, although not everyone herxes badly - I didn't.
Go for it - start getting well now so you can enjoy your family and so you will be there for them for a long and happy life.
Dan
God bless,
Hillary
It can certainly challenge your limits to have a family and lyme at the same time. My daughter was in the hospital after being attacked by a dog,and I was infusing rocephin at her bedside..It stank, but it was what it was.
Ask for help when you need it. After being ill for so long I worry about wearing out my friends and family, but that's up to them. I try to be reasonable..and they haven't let me down.
You have support here at least in type...I'm proud of you my dear...yes I am!
Carol Ann
My four children and I are currently on antibiotics for lyme. My husband tested positive to the most specific bands and is mildly symptomatic.
He has seen me herx from the meds and at this time says he can't afford to get sicker by starting treatment. According to our LLMD, now is the best time for him to start treatment while his own immune system is still functioning. I know with two of my children that were least symptomatic the response to the meds has been really good. They have herxed but bounce back really well with a short break. All of their symptoms have improved and we will soon be moving on to the next round for co-infections.
Sooner is better!!
Cheryl
You certainly don't want that!
Go for it!
Get rid of the nasty keets inside your body now that you can probably do it quicker and easier than most of us!
Good Luck!