It’s a mystery?

[motherbear]

Hi everyone,

just wondered if anyone has had the same experience.

When my son started Doxy 100mg M,W and Friday 5 months ago we saw an improvement in his CRP and he was feeling better in himself and had even reduced his Voltarol to 50mg a day instead of 150mg a day.
Now it seems just as bad as it ever was.
I was also wondering if you could look at these fairly recent events and let me know if anyone has been through the same .

In the last two weeks of October he got a nasty chest infection. He was presribed Erythromycin for a week and it seemed to do the trick. He still took his Doxy along side the Erythromycin.

Two weeks after he completed his Erythromycin he upped his Doxy to 100mg M,T,W,Th and Friday.
He only took this increased dose for a week.
at the end of that week he herxed or so we think very badly .

His dose was dropped back to 100mg M,W and Friday. His bloods were taken and his CRP went back up very high again.
This was such a downer as it had come down rapidly. No bloods taken since.

His increased pain has subsided enough that he can function around the house slowly. His stiffness had started to improve a little at the begining of his AP but now it is as bad as before. He is still on his original dose of Doxy .

His GP and AP Docs are happy for him to increase at 50mg a week or slower depending on how he is feeling.

Has anyone been through the same sort of thing? 😕
What is whirling constantly around my over protective motherly head is ,
is it still a herx albeit a long one or even worse Is the Doxy not working now (my worst fear) or did the chest infection set this all of ?
Or on a more positive note if it is still a herx then it’s really knocking those little bugs on the head!

I know you can’t really tell what is going on but if anyone out there has been through the same and found they came out of it feeling better then ever it would be lovely to hear.

At the 5 month mark shouldn’t he be seeing improvement how ever small ?

I would have been happy with the small improvement he made after the first month but that seems to have gone now.

I can’t loose faith in AP as it is all we have.

Wishing you all the very best health for 2011 and a cyber hug along with a Merry Christmas……… 🙂

Caroline.

[Parisa]

CRP is not specific enough in my mind. The higher CRP could be related to the chest infection. Sometimes when you take an antibiotic it can beat down one of the bugs and one of the co-infections can pop up. These co-infections sometimes require different antibiotics. It’s a matter of playing with things to find out what is going to work. The fact that your son responded in the beginning is a good sign. Now it’s a matter of finding out what else he needs. Is he following an AS diet? It seems to me I’ve seen posts that indicate that no starch diets can be very helpful.

[motherbear]

Hi Parisa,

Thanks for your reply. It is always a relief to have more than myself trying to sus this out.
I had him tested for Lyme diease and he came out negative. You have got me wondering if he should be on another antibiotic as well as the Doxy. I am going to mention this to his AP Doc.
My son was near anorexic for three years and had lost so much weight he was becoming ill for that alone.
When I talk to him about the no starch diet his reply is that he had no starch for three years with no effect so he is refusing to try it.
His appetite has picked up big time and I wish I could convince him to try it but at 18 years I can’t make him.

Thanks again Parisa, Merry Christmas!

Caroline.

[Parisa]

Caroline,

If you have seen any of the posts here regarding Lyme testing, you will realize that it is very unreliable. The fact that your son got a negative on the test doesn’t mean that he doesn’t have Lyme. Many of the Lyme tests out there are not sensitive enough. I can understand your son’s concern about the no starch as he needs to put on necessary weight. My husband had little appetite for several years. It was a daily battle to keep his weight above 135. He couldn’t do a candida diet because he was wasting away as it was. He did go gluten free though as that is only removing wheat, barley and rye leaving plenty of other sources of carbohydrate.

[motherbear]

Hi Parisa,

When his lyme results came back neg even his AP Doc said it could still be latent lyme even with the results.
I am going to contact him in the New Year and ask about lyme and if we could add something to his regime.
He did say the Doxy is used to treat lyme and as we upped the dose he should start to feel better.
My son is still skeletal and at this moment in time even I want him to gain weight whatever he eats. As his weight returns to normal I will approach him again about the diet.
As you know it is just as scary to see the massive weight lose as it is anything else.
Even though his appetite has picked up he is still eating nowhere near what he should be to maintain a healthy weight but it such a relief to see him eat a meal no and again.
I hope your hubby is doing well Parisa and your taking care of yourself as well.

I am going down the lyme route. I had a feeling about it before and it has kept on bugging me since the results. I guess youur gut feeling is always right.
Take care.
Caroline.

[Jan Lucinda1]

I don’t have any answers but wish the best for you and your son.

Jan

[motherbear]

Thanks Jan…. :0)

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