Coping with Long-Term treatment

December 16, 2008

My husband was not as ill as I was (we both, and our 3 kids, have

Lyme, Babs, Bart, Ehrlich, Mycoplasma, HHV-6 and Chlamydia pneu...),

but b/c he was having increasing symptoms, he started antibiotic

treatment several months after I did in Fall 2006. He did herx, but

never as signficantly as I did early on. We suspect he was infected

in his youth (now 41) and over the course of his 20's - he would have

these flares and then it would go away, his immune system handling it

at that time. At this point, I have gotten 90% better but am still

struggling with coinfections; our kids are all significantly better

as well. But my husband feels that he has just gotten worse over the

course of his 2 yrs on antibiotics. I cope with this, and the

uncertainty over any treatment path, by informing myself - reading

everything I can (reputable sources), attending science conferences,

hearing from those developing the clinical practice/treatments, and

researchers. This has helped me to know that the choices we are

making are the best we can make at this time. My husband doesn't

cope this way, he has relied on my judgement, but his gut instinct

lately is telling him - I've only gotten worse since I started

treatment, it must be the antibiotics. Has anyone dealt with

similiar issues - what has helped deal with this suspicion that we

always have? I felt that he needed to go off antibiotics and see

what happened - which he did... and fairly shortly after that,

Babesia symptoms reared their head. I think he feels that by

treating this, we've made everything worse for him. Any thoughts?

Thx...

December 18, 2008

,

My doctor told me that on the antibiotics I will feel worse before I feel

better. This is because of the herx reactions going on during treatment.

Your husband might want to look into getting an evaluation for yeast,

because that could contribute to him feeling ill. I also see a naturopathic

doctor/nutritionist who advises me about which supplements are best. She had

my adrenal function tested and I was way out of balance. That can affect how

you feel, too. I don't know what the answer is for your husband, but it

certainly makes sense that he might feel worse on the abx if the spirochetes

are dying off, which contributes to him getting more symptoms. I don't know

how many years he's been on abx, but it can take several years solid to

start feeling really well again. Has he read Cure Unknown?

Best of luck to you and have a Happy Holiday.

Janet

December 19, 2008

Systemic yeast could be a problem and it is for me so can't take much

abx or get much worse.

In addition, maybe the abx he has been on have only been partially

effective, thus stressing his immune system without really doing the job.

If the right abx or combo were found maybe it would really get rid of

what he has...

And yeast might need to be addressed.

Staying on abx that aren't really doing the trick while you get worse

is probably not a good idea, as his gut instinct is telling him.

>

> My husband was not as ill as I was (we both, and our 3 kids, have

> Lyme, Babs, Bart, Ehrlich, Mycoplasma, HHV-6 and Chlamydia pneu...),

> but b/c he was having increasing symptoms, he started antibiotic

> treatment several months after I did in Fall 2006. He did herx, but

> never as signficantly as I did early on. We suspect he was infected

> in his youth (now 41) and over the course of his 20's - he would have

> these flares and then it would go away, his immune system handling it

> at that time. At this point, I have gotten 90% better but am still

> struggling with coinfections; our kids are all significantly better

> as well. But my husband feels that he has just gotten worse over the

> course of his 2 yrs on antibiotics. I cope with this, and the

> uncertainty over any treatment path, by informing myself - reading

> everything I can (reputable sources), attending science conferences,

> hearing from those developing the clinical practice/treatments, and

> researchers. This has helped me to know that the choices we are

> making are the best we can make at this time. My husband doesn't

> cope this way, he has relied on my judgement, but his gut instinct

> lately is telling him - I've only gotten worse since I started

> treatment, it must be the antibiotics. Has anyone dealt with

> similiar issues - what has helped deal with this suspicion that we

> always have? I felt that he needed to go off antibiotics and see

> what happened - which he did... and fairly shortly after that,

> Babesia symptoms reared their head. I think he feels that by

> treating this, we've made everything worse for him. Any thoughts?

> Thx...

>

December 30, 2008

,

I do understand how you and your husband are feeling. While my husband

does not have Lyme, he reacts to my situation the same way yours

reacts to his own. I also got worse before getting better and my

husband was sure we were on the wrong track and that the meds were

making me worse. I on the other hand, was comfortable with knowing

that this is a very long process. I read a lot about Lyme. He would

read nothing unless it was written negatively. We have had many

disagreements about this and now we avoid the subject completely.

This leaves me with a feeling of being rejected by him. However, we

have agreed to disagree and leave it at that.

Coinfections can certainly make everything worse. After 3 years in

treatment, my Babesia and Bartenella are gone. My doctor treated them

heavily and so I was very sick, but now I am so much better. I still

have bad days and get exhausted easily, but I do recouperate after

resting, which never happened before. I will never be as strong and

energetic as I was. but I can live with this. Contentment is the key.

However, I can say this because I am not in pain right now. My pain

meds are working and I have found that this is the key to functioning

at an acceptable level.

I hope you both can learn to cope well while you are in treatment.