Lyme Remission

[JulieKatie]

Does anyone know or have a child with lyme who has gotten better? I think if my daughter Katie could talk to someone who is making it to the other side, she may do better….she has very little hope of feeling better. She has felt bad for so long that I think she literally doesn’t think good will ever come. She talks to people with lyme,but none who are recovered, even if only in remission. Thanks! Julie

Daughter with lyme and at least bartonella, on 3 antibiotics x 2 weeks…feeling horrible everyday.

[matv]

She has to change her thinking and gain some hope. The mind has a lot to do to help the healing.

I hope she gets better. If I were her I would try to keep faith.. only because if I didn’t then the only other option isn’t living.. its easy to lose sight on the prize. I hope she can keep focused .. she’s in my prayers.

If her Lyme treatment isn’t working it might be time to do something else for now? The way I understand it, treatment is time cycle sensitive ..plus the coinfections should be addressed before the lymes? Its also a verrry long process so she needs to have faith and patience. 🙂

Goodluck, I hope a major change comes your way.

[Maz]

@JulieKatie wrote:

Does anyone know or have a child with lyme who has gotten better? I think if my daughter Katie could talk to someone who is making it to the other side, she may do better….she has very little hope of feeling better. She has felt bad for so long that I think she literally doesn’t think good will ever come. She talks to people with lyme,but none who are recovered, even if only in remission. Thanks! Julie

Daughter with lyme and at least bartonella, on 3 antibiotics x 2 weeks…feeling horrible everyday.

Hi Julie,

I think the problem with most support groups is that the parents (naturally) tend to advocate for the unwell child or teen, so they are disconnected from their peers who are going through the same thing. It was for this reason that the CA Lyme Disease Assoc set up a teen support network for young folk with Lyme to connect with one another. Here is a link to learn more:

http://www.lymedisease.org/resources/children_support.html

You would probably have to talk to the LLMDs who treat the children and young people to find out how their patients do with their treatment, because support forums tend to be where people discuss their ongoing issues, whereas the folk who get well don’t normally stick around – they’re too busy living life again. Know what I mean?

This is still very early days for Katie. Depending upon disease severity, how long a person has had Lyme, pathogen load, age, strength of immune function, experience of the LLMD, what measures are being used to support therapy, compliance (difficult for young ones)….there are lots of things that factor in to how long it takes for a person to return to wellness. There are also the mental health issues that can be the result of Lyme or the sequalae of just having a chronic illness, so you are very wise to separate out this issue as something to deal with on another level, if you can. Talking with others her age who also have chronic Lyme may help and may be all she needs, but talking with a counselor who specializes in chronic illness needs may be a good idea, too. I know that when I was so very ill in the beginning, I entertained some very dark thoughts – things that would never have crossed my mind normally – and I was too unwell to go see a counselor or to even have the energy to look one up. Nevertheless, it was something I now think I could have benefited greatly from as I (a) adjusted to learning I had a chronic illness and (b) so fearful that the rest of my life would be a painful downward hill.

There is no doubt a physiological reason why the brain and mental health issues arise from chronic Lyme and inflammatory illnesses. Not only does the infection infiltrate the brain, but inflammatory cytokines also affect brain function (there is info on the main site about this). Perfectly healthy folk who become suddenly chronically ill are not people who just need to “perk up and pick up.” Lymies are hearing this every day from mainstream docs who consider chronic Lyme a psychosomatic illness, call them “malingerers,” “medication or antibiotic addicts,” and “it’s all in their head.” There are some very real fears associated with sudden disability and the infectious process, itself, affecting brain and cognitive function. This can affect the caregivers, too, as no doubt you’re discovering, which is why you’ll also find parental support at the above link. It’s also why there are many psychologists and psychiatrists who get into the field of treating chronic Lyme patients. In fact, the last ILADs president was a psychiatrist. Lyme patients literally get cast to the curb by a medical system who says nothing is wrong with them or they have some other illness. So these patients wind up at the offices of psychotherapists and psychiatrists, desperate for answers, and these docs find that these patients have no mental illness, but Lyme. Really, the Under Our Skin movie speaks volumes in this regard.

Julie…as Katie has just begun triple therapy, she is going to feel quite rough for a few months while she gets through the worst of the herxing. What has she been able to do for detoxing to date? I know it’s just one more thing to have to push a young person to do, but detoxing can be critical to how one is feeling while going through the early die-off stages, even if things are introduced and tried slowly, one at a time.

[Eileen]

Julie,

Your post tugged at my hearts strings. Sorry to hear that your girl is so down and out. I have two children with LD and co-infs. (& myself). What she’s going through is part of the disease process. The chronic illness experience is not easy to embrace. My boys are doing very, very well now. 😀 😀 😀 There are many things that can be done to help her. Please PM me if you’d like to talk more personally. I’d be more than welcome to give you a kind hand in this. Hugs to you and your daughter.

Eileen

[Author]

Posts