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Hi guys,
I just wanted to write a very quick update and shout from the rooftops that my CRP, which was 134 last July, has come down to just 3 when I had it tested last week. And my ESR has come down to just 2!!
I have finally halved my Arcoxia dose and come off the contraceptive pill as well – which I was using to improve the arthritis symptoms as well.
Now, I just need to get my blood pressure under control. But this is a longstanding problem that I should have been getting to grips with a long time ago. ACE inhibitors made me feel too queasy and dizzy, so we're going to try beta blockers next. By the way, I have, and have always had, a terrifically high pulse rate – alarmingly fast really – 90-100 beats per minute lying down! Does anyone else have this, or is it just my bad luck?
Anyway, I could have jumped for joy and cried when my GP told me these blood test results yesterday. My main goal when I started the Lyme treatment was to get my CRP and ESR under 10. They have never been below 20 in the past. And I'm there, after 22 years!
Thanks so much to everyone at the Road Back, especially the volunteers! I owe my good health to all of you!
Oh Ruth! That news is so wonderful, I have a tear in my eye. I remember you posting here when things were soooo bad and I could never believe you were so strong in spite of everything you had had to contend with for so many ears plus taking care of a little one, then a newborn! You are amazing. I am so happy for you, words cannot do justice to it. You rock!:dude: 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)Ruth,
I'm speechless! 😯 Those numbers are amazing!
Well done, Mom, now you can enjoy chasing those precious little boys and be tired at the end of the day for all the right reasons. 😉
Take care…..kim
[user=415]spacehoppa[/user] wrote:
Now, I just need to get my blood pressure under control. But this is a longstanding problem that I should have been getting to grips with a long time ago. ACE inhibitors made me feel too queasy and dizzy, so we're going to try beta blockers next. By the way, I have, and have always had, a terrifically high pulse rate – alarmingly fast really – 90-100 beats per minute lying down! Does anyone else have this, or is it just my bad luck?
Hi Ruth–
Congratulations, your news is awesome!!!
I too have problems with my blood pressure. My doctor actually took me off the meds even though my BP jumps around. I watch it religiously at home. He said that the BP is from infection and inflammation. I googled that and came up with this and other articles–
BTW, I was on beta blockers when he took me off–they will definitely cause your pulse rate to come down. My pulse is all over the place–but usually on the high side even at rest. We are noticing that when the bacteria get stirred up, things go more haywire.
You might want to consider Benicar as a form of blood pressure med. It was this med that actually brought my arthritis pain to the surface. The Benicar disables the bacteria so the immune system can take care of it. It worked (unintentionally) quite well for me. It is part of the Marshall Protocol–much has been mentioned on this BB. Supposedly, the more you take the less inflammation. A recent poster wrote an article on it:
http://www.thescavenger.net/health/inflammatory-diseases-may-be-caused-by-bacteria-74897.html
I asked my primary if I should ever go on Benicar again. I switched to her when I had such joint pain while being on Benicar. She said no way. My LLMD did mention that he is familiar with the protocol–maybe some time in the future–I'm having enough grief right now with what I am on :doh:–not anxious for additional pain.
Continued success to you–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Just saw this post today. Before arthritis came, I had problems with high blood pressure which started in 2003 and every now and then my blood pressure would go high and stay high for a few weeks or months. I tried a lot of bp meds and what really worked is Diovan (an ACE inhibitor) which has fewer side effects. One thing I noticed on all ACE inhibitors my pulse was really high like in the upper 90s which came down everytime I stopped using them. I read it in a medical book too it is a side effect of ACE inhibitors so maybe you guys are having the same issues as well. I am off all blood pressure meds now. I also believe some kind of bacteria or viruses or disease had to do something with it. My doctors always dismissed those ideas. My blood pressure would be low like 100 sys/60 dia before going to bed. In the middle of night, it would jump suddenly to 165 sys /110 dia and would wake me up. I ended up several times in ER due to it and they would prescribe me the bp meds and then the doctors would take me off bp meds in a few days, weeks or months as my bp would go low again.
[user=415]spacehoppa[/user] wrote:
I just wanted to write a very quick update and shout from the rooftops that my CRP, which was 134 last July, has come down to just 3 when I had it tested last week. And my ESR has come down to just 2!!
Anyway, I could have jumped for joy and cried when my GP told me these blood test results yesterday. My main goal when I started the Lyme treatment was to get my CRP and ESR under 10. They have never been below 20 in the past. And I'm there, after 22 years!
Ruth, I'm totally gob-smacked at your labs – no words – just the happy dance! Go girl – go girl! :roll-laugh: It's truly remarkable and in under a year, no less! I really do think you've broken some records around here for swiftest turnaround of longstanding RA!!!
What in heavens name does your GP say about all this and the rheumy who fired you??? I do hope you can somehow get your labs to this disbelieving doc! To all intents and purposes your inflammation is now in remission, Ruth. Good on you, girl. You stuck to your guns, went through the unnerving herxing, the disbelieving docs…you swam against the tide and you're now home-free. WOW – I am stunned and in awe. Twenty-one years of toxic rheumy drugs that did nothing to slow your progression and only masked your symptoms.
I feel like weeping for the crime of it, but we all need to save our energy for keeping our focus to get the word out… and to celebrate your victory with you!
Rock on, Ruth! :dude:
Peace, Maz
Ruth,Wow…You're my poster girl.this is amazing.This means that I ,as well, after
8 yrs have HOPE.But tell me what 's happening on the symptom-side.?I've been
watching youtube waiting for a new report …Take care,KathRuth,
I am so happy for you and the good report. I pray it will stay this way for a long, long time. Your kids need you and this give them a mom that is able to do all the things they are looking forward to do.
Eva:roll-laugh:
Eva Holloway
Ruth this is absolutely amazing. I have been watching your blogs and listening to you speak, I can just hear your voice as you shout your good news. What an inspiration you are. Thank you for sharing all you do, and may you continue to get better and better.
Kindest regards always, Christina
Hi everyone, Thanks for the congratulations! I am so so thrilled – still smiling like a cheshire cat, days later. I am also really surprised by the speed of it as well. Dr D certainly seemed to get me on the right combination of meds didn't he! What a star!
I honestly felt about 50% better the very morning after the first two doses of this combination, like a rock had been lifted off me, so I knew right away this was going to work. The herxes have been hard to tolerate and sometimes downright scary though, so it's not an easy path to take. But now my herxes are less and less frequent and my continual sweating seems to be under far better control too. I used to sweat all day and all night long, but now it's just when I actually overheat and occasionally if I herx.
I think it is cool in so many ways that I am better, but not least to give hope to others who have longstanding disease of ten, twenty years or more. It finally puts paid to the idea that abx only work if you've had the condition less than six months, in my mind anyway.
Trudi – Sorry you're feeling so unwell at the moment. Thanks for those interesting links. Yes, I do have CMV and it would make sense if a viral condition like CMV were causing my high blood pressure. It would at least explain why so far the abx haven't got it under control like they have my joint inflammation.
I did consider asking for Benicar, but to be honest, explaining that theory to my GP might be pushing things a little too far, and in all honesty I'd like him to feel like he's still in control of some aspects of my health! I am such a pushy bugger in most other aspects, and the truth is he knows more about controlling blood pressure than I do.
Having said that, I am going to try and get off the anti-inflammatories and steroids asap, as I know this will help. Also, losing a stone (14lbs) in weight will help too I think. So this is my next goal. I have already lost 7lbs in the past few weeks, so I'm halfway there already!
Hi APbeliever – It's interesting what you say about your blood pressure going up and down like that. Mine does seem to as well. When I was pregnant with George it was relentlessly normal, even late into the pregnancy, so I know it can go down, now I just need to figure out how to get it there and keep it there. Who knows, maybe the abx have stirred it up somehow?
Thanks again everyone. You all are so supportive. I could never do this without all of you!
Dear Ruth,
I am so happy these lines find you doing soo well. 🙂
Your R/A levels are gone WOW.
What a beyond fantastic report.
x Roz
Ruth,
Wow, what unbelievable results! You give us all inspiration that we will do well too.:dude:I have also acquired high blood pressure, that comes and goes. It used to be low, and I do have a family history, but feel this is related to the infection. My bp is low in the morning, so have never been on medication.
My IV nurse (clindy) told me that she had high blood pressure and high cholesterol, and was on prescription medication. She's started taking bitter melon, and has been taken off all medications, and her bp and cholesterol are now normal. Her doctor can't believe it! I ordered the product, and my blood pressure has improved, and has been no higher than130/80. Still not as good as before this illness, but an improvement. I can feel the difference.
http://www.vitacost.com/Charantea-Bitter-Melon?csrc=GPF-858101001064
Also, went to a lyme conference and this fabulous doctor from PA (Dr. C.) recommended a supplement, Kong May for babesia, which coincidentally is used for lowering cholesterol and high bp. I haven't tried this product, and haven't asked my llmd about it, but thought it was an interesting tie-in to babesia. I'm sure babesia and/or lyme has a role in our high bp.
http://www.cgcmall.com/ProductDetails.asp?ProductCode=hr00km1
nancy
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