Boy, Do I Need encouragement

[motherbear]

Hi Everyone,

I don’t know if a swift kick up the backside is in order but I do need tons of encouragement. 🙁

Things with my son have been so hard for the last few months. He was showing signs of progress when he started AP and we were both feeling so optimistic. Now however he is as bad as ever and we are both on such a low.
I try to keep him looking towards a brighter future and remind him that we are only six months into AP but inside I feeling like this isn’t working anymore.
I hate to give him false hope but then it’s better than none.
I would have thought that six months into this he would have some sign of recovery.
I am slowly increasing his Doxy and he is now taking 100mg M,W and F and 50mg Tue and Thursdays.
His blood works came back the other day and his CRP was 61 (norm range = 0-4) .
In the first three months of Doxy his CRP went down to 23 . I can’t understand why it is back up after such an improvement?

This morning was so bad my heart is breaking for him. He is up all night in pain and his stiffness is as bad as ever.
He has to try to get to college but the effort is enormous and he is talking about giving college up.
I am not going to stop Ap because it is all we have but wondered if you could give me your thoughts on whether I am too eager to see results at the six month period.
Does anyone think because he is still increasing his levels of Doxy that things may start to improve more quickly?
I know no one knows anything for sure but any advise or encouragement is so needed this morning.
I guess I am just emotional wreck this morning and looking for someone to say things will be ok. 🙁
Thanks for listening.
Caroline.

[lynnie_sydney]

@motherbear wrote:

Hi Everyone,

I would have thought that six months into this he would have some sign of recovery.
I am slowly increasing his Doxy and he is now taking 100mg M,W and F and 50mg Tue and Thursdays.
Caroline.

Caroline I am so sorry to hear that your son is in such pain again. A few things came up for me. I am wondering if he is just taking too much doxy – increasing it will elicit herxing and bloodwork and inflammatory markers can increase in addition to physical symptoms with a herx. Given that he has so much pain and inflammation, he may well be hyper-sensitive and need a much lower dose to keep herxing tolerable. Also, if his C-RP is that high, then the ab wont be able to reach its target anyway, which makes the dose counter-productive, according to infectious theory. Have you been able to speak with Dr H about this? Secondly, it may be time to do a little more investigation. Many people here have had many “kinks” in their road to wellness and needed to add or tweak regimes along the way. Perhaps Dr D (formerly Breakspear) may be an option for you now. He is still seeing patients privately. Ruth (forum name spacehoppa) still sees him (I think in Newcastle) so you could PM her for some info if you think that might be an option. He is not only a rheumie but is Lyme Literate and he may want to further investigate the Lyme option (I know your son’s original tests were negative, but am not sure which lab they were done through- and some lab tests are considered not so good). Finally, I am wondering whether you have been in contact with John (DragonSlayer) regarding the no starch diet that he and Professor Ebringer beieve is so necessary for AS patients. Contact him via PM through this Forum and/or have a look at the website http://www.kickas.org. Those are a few things to ponder, I’m sure others will chime in with their wisdom. Hang in there Caroline! Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[motherbear]

Hi Lynnie,

thank you so much for your thoughts on my son.
I have thought long and hard as to what has been happening to him. What strikes me is that this all went down hill after he had a chest infection which was treated by abx. Soon after that he increased his Doxy if you can remember my previous posts,
which we think caused a really bad herx so I then with the Docs consent reduced the increase and re started to introduce his increase by 50mg extra on Tuesday for 2 weeks and then another 50mg on Thursday for 2 weeks and that is where we are today.
He was tested for Lyme by his GP which is not the Igenex test by DR D. The results were neg but after a discussion with his AP Doc, Doc H. He said that latent Lyme could come up as a neg and that the Doxy would help him if he had Lyme.
I want to get him tested by DR.D but my son just won’t travel anywhere and is getting so anti everything that I feel I have two batttles to fight. I know he is at the end of his tether and is giving up on everything.
So I will try to get him to see sense and get tested the Igenex route.

It does now you mentioned it seem that this all went down hill from the Doxy increase and maybe he is in a constant herx?

I have read John’s posts and know he has benefited greatly from a low starch diet.
having broached this subject many times with my son he refuses to do it as he was anorexic for nearly three years and has just started to eat properly again. He will only eat what takes his fancy and as a mother looking at his what was emaciated body the fact he has put on a little weight what ever he is eating is such a relief.
Having said that I will contact John for advise and try to push my son into making decisions that may well help him.
This battle we are fighting is two tiered for me as I feel I am fighting AS but at the same time trying to get my 18 year old to do what is needed when he feels nothing can help him anymore.

I have to send DR.H his blood work results this week and will mention to him everything that is going on and hopefully he may suggest something.
Thank you so much Lynnie.
I think your right or hope your right about one of these things needing sorting out. I have to start investigating again in the hope that someway I find the reason for this.
Caroline 🙂

[lynnie_sydney]

Caroline – I cant imagine how frustrating and emotionally painful and draining this is for you – to have to stand by and watch your son go through all this. Am sending you (and your son) postitive vibes and the hope that some light can be seen at the end of this dark tunnel very soon. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Kim]

Hi Caroline,

I’m so sorry for the pain you and your son are experiencing and hope you can find the answers soon to turning things around.

Take care…..kim

[motherbear]

Thank you Kim,

I am going to try and get proactive again. Fingers crossed 😐

[motherbear]

Thank you Lynnie for all of your help.

I just couldn’t do this without RB and everyone who helps.

Caroline.

[Nell2]

H Caroline,

I’ve had a sick son and I know how horrible it is when things aren’t working very well. Hang in there, it will get better again!

I started taking AP dosing of doxy after a positive test for mycoplasma. I had been suffering from chronic fatigue, joint pain, and hormonal instability for several years. Doxy took away the joint pain in about a month, but I was still left with the other problems. But after about 6 months, it was like a curtain was lifted and I was suddenly fine! I leapt out of bed and could work outside all day and just felt fantastic. That lasted about 2.5 months, and then I sunk back down again, back to the place of no energy.

I increased the doxy, hoping that would get me well again. But no. Eventually I did the Igenex test and was positive for Lyme. The Western Blot from years ago had been negative according to the CDC but neither I nor my family practice doctor knew that there were alternative, and better, ways of interpreting that test (which would have made it positive).

When I told this story to my LLMD, she said that they see this pattern often. The trouble is that doxy does work for Borrelia, but that the typical Lyme patient has coinfections that doxy does not work for, and those eventually overwhelm the patient and they lose improvements.

I don’t know a thing about AS and how that might be entwined with Lyme, but I’m just passing on my experience with AP dosing of doxy working really well and then failing.

Nell

[motherbear]

Hi Nell,

thank you for sharing what happened to you whilst on Doxy. AS is usually thought to be caused by Klebsiella in the gut and that is were the no starch diet comes in as Klebsiella feeds of starch.
There has always been something about the Lyme which has me thinking ,before all of this we lived in Georgia for 5+ years which as you know is full of ticks. Then on our return back to the UK we moved to the Highlands of Scotland which is full of ticks too.
My son was an outdoor boy, in fact we were all outdoor people and spent more hours out of the house than in it.
So the tick theory is high on my list as well as Klebsiella.
I know it was awful for you to have such good results with your Doxy at the 6 month mark and that to be taken away a few months down the line but you have let me know that there is still light at the end of the tunnel and I need to get moving when it comes to sorting this out.
He was tested by his GP for Lyme and it was neg. Having said that I know it is not an Igenex test so could be a false negative.

Now all I have to do is to convince my son that he needs an Igenex test and no starch diet 🙁 This is not going to be easy as he is so low he doesn’t want anymore intervention.

Thanks again Nell.
Caroline.

[Nell2]

Caroline,

If the test he already had was a Western Blot, this might help you to evaluate it if you have a copy.

http://www.lymenet.de/labtests/brenner.htm

Also wanted to say that even though I’m still really sick and mostly in bed all the time, with the new protocols that go after coinfections as well as Lyme, I’m having very good days mixed in with the bad and not-so-hot ones. So I’m really optimistic that I’m on the right road, however long it turns out to be.

I got a tick bite in France after I was already sick, and it has me wondering about how many strains we might be infected with if we have bites from different continents! I used to be an outdoor person too — it does seem so unfair, doesn’t it, that all that outdoor fun turned out to have such a dark underside. I love being in the woods and loved seeing my children play and hike in them, but it just isn’t the same anymore. Treacherous instead of beautiful.

Nell

[motherbear]

Hi Nell,

sorry to hear you are still unable to get around comfortably most of the time but it is so good to hear you have such a great positive attitude toward your recovery. I am a great believer that a positive mental attitude is in itself a medicine but have lost my way with all that is going on.

My son had his test done by our local General Practioner. It wasn’t as we know it a western blot as far as I know.
The only lab test results on paper I have received have said this exactly and it is what his GP received.

Venous blood taken. for micro/virus serology
B.burgdoferi C6 antibiody EIA …… Negative
B. burgdoferi EIA (Vidas) …… Negative

Test comments
(VBBE) The significance of negative borrelia serology depends on the duration of illness or time possible exposure. The antibody response may also be delayed and less strong following antibiotic treatment. If recent infection is possible please send a repeat blood 4 weeks after the onset of illness or 8 weeks after possible exposure, as appropiate.

I will have a look at the site you sent Nell and see if I can make head or tails out of it.

Thanks again for your help, hopefully I will gleen some info from the site but I must admit I haven’t looked at Lyme results before in this way so it might be a while before I understand the significance of it.
You take great care of yourself.
Caroline. 🙂

[Jan Lucinda1]

I don’t have answers, but sure hope things will improve soon for your son.

Jan

[motherbear]

Hi Jan,

thanks for the reply, I really hope we can work it out and get back on track.

Take care
Caroline.

[Eileen]

Hi Motherbear,

I, too, have a son with chronic illness. It’s the most painful thing I’ve experienced. It’s still hard to talk about it.

For you and your son, I hope that you are able to sort though all of this and find some peace through all of it. One day at a time, one minute, one second. Sending you lots of hugs of understanding, Motherbear.

Eileen

[motherbear]

Eileen,

I am so sorry to hear you are going through the same thing.
We both know what each other are going through.
I just hope that we stay strong for them and that we do find a way to get them back
on track to where they were supposed to be before all of this happened.
I am sending you hugs too because we need them all…. 🙂

We will get there. Thanks again for your thoughts Eileen.

Caroline.

[Author]

Posts