13 Oct 2021
Author
kimomile
Title

back again...it's been awhile

Body

I have not been on here in over 8 years. I thought I had this thing under control and had not even thought of CPN in a long time. I have also dealt with Lyme, Babesia, SIBO, mold and candida. Unfortunately, I have had reemerging symptoms, and of course I no longer have a practitioner to guide me.  Not sure what to do.  I'm not even sure it's the CPN.  Could be something else, but it feels exactly the same and my blood pressure is really high, despite healthy eating and exercise.

Comments

boadicea

14 Oct 2021 03:03 am

Just want to say sorry you find yourself back here again. Our stories are very similar, so I do understand the battles. No easy answers, but definitely cheering you on. x

Neuro symptoms & many health problems from 1989. NAC+all supps(04/11) CAP(05/11-10/17)

Sarah

14 Oct 2021 04:31 am

Hello Kimomile, since the only re-emerging symptom that you mention, really high blood pressure is not a symptom of Cpn, you could well be suffering from something else. If I were you, I think that seeing your general pracitioner must be your first port of call and pretty quickly at that.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

kimomile

14 Oct 2021 10:54 pm

I know I didn't go into detail, but I have seen my GP quite a bit over the last month. Had a stress test.  All seems fine. Went on HBP medication two weeks ago.  I have never had the typical CPN symptoms, whatever they are.  It has always been the fatigue, anxiety, chest tightness, brain fog, secondary porphyria, and neuro symptoms.  I've had all sorts of test done by my GP and as usual, nothing stands out.  The only small thing is that my cholesterol is just barely over normal.  Anyway, I'm worried.  Not sure what to do.

CPN positive, secondary porphyria borderline positive, anaplasma positive, candida positive, Lyme test negative, but positive bands.High blood pressure avg 150/95, chronic fatigue, brain fog, stomach distress, anxiety, memory issues. 

kimomile

15 Oct 2021 12:52 am

I also had begun taken NAC about two months ago and couldn't understand why I was feeliing so badly. Recently I looked up detox and/or herx with NAC and this site came up. I had forgotten that NAC was an antagonist for CPN.  It really all points to the damned thing being back.

CPN positive, secondary porphyria borderline positive, anaplasma positive, candida positive, Lyme test negative, but positive bands.High blood pressure avg 150/95, chronic fatigue, brain fog, stomach distress, anxiety, memory issues. 

Sarah

15 Oct 2021 04:21 am

Kimomile, when I said that high blood pressure was not associated with Cpn I must have been just thinking about myself, so I'm sorry! My blood pressure has always been normal, unlike David's, which when he started treating himself for Cpn was extraordinarily high, but after treatment dropped to scarcely higher than mine.

Also, with regards to NAC, I didn't start taking it until about fourteen months into treatment and by this time I was already on intermittent therapy, so I presumably was pretty much free of the disease.

With you, you mention fatigue and that is a symptom. Do you also have a slight cold or cough? I had a hacking winter cough for years until I started treatment, but have hardly coughed since. I'm afraid that if your job means mixing a lot with all sorts of people, then reinfection is always a possibility.

Sarah

 

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

kimomile

16 Oct 2021 01:45 am

Yes, my blood pressure was high 10 years ago, but went down with treatment.  The symptoms I am having now are exactly what I had when I started this mess.  The anxiety, chest tightness, and neuro symptoms are more associated with the secondary porphyria (so says my doc from 10 years ago).  My problem is that doc is no longer around and I don't believe many treat for this. I have an acupuncturist that is also functional med, but he doesn't know much about this either.  I feel like I need treatment, but don't know how to get there.  

I'm also curious to hear from anyone who suffers from the porphyria.  It's the worst part of it all.

Anyway, thanks for your responses. Not even sure what I'm looking for by posting here.  Just feeling bad and I'm worried.

Thanks!

Kim

CPN positive, secondary porphyria borderline positive, anaplasma positive, candida positive, Lyme test negative, but positive bands.High blood pressure avg 150/95, chronic fatigue, brain fog, stomach distress, anxiety, memory issues. 

Sarah

16 Oct 2021 06:23 am

Hello Kim, well if anything my blood pressure has always been, if anything, on the low side of normal, which is lucky because I know so many people on meds for high blood pressure. In the quiet of the night I used to be able to hear David's heart beating, which was rather worrying, but he took the same treatment at the same time as me, and it bit by bit quietened down, then one night I realised that his heart was behaving itself.  He took the treatment full time for about a year, but thinking back it will have been at about nine months before I couldn't hear it any more at night.

So Kim, it might be as well if you took the treatment again.  I took just doxycycline, roxithromycin and metronidazole for a year full time before starting on intermittent therapy and obviously I can't say now whether I needed to do the intermittent bit, but I can say that I have had no recurrence of symptoms, so have not needed to take antibiotics since 2007.

Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

13 Oct 2021
kimomile