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Well, the Remission honeymoon is over for now as I seemed to have Relapsed a bit. :doh:
I noticed a couple of months ago that I was having some return of SD symptoms after being off of all abx for an entire year and that I was having a lot of neck pain again. We think it's Babs rearing it's ugly head again, so that's the direction we're going to start.
I just returned from a visit with my LLMD and he's put together a series of abx combinations to attack so I fully plan to feel like crap for the next 6 months. Of course, I know the importance of not letting things get out of control so I'm willing to hit it hard…………..again……….ugh! :X
Maz mentioned this in a previous post, but my doc was also saying that they are learning that Strep is a much bigger player than originally thought in treating Lyme successfully. I've had recurrent Strep my whole adult life, and as my doc is polling his patients, the overwhelming majority of them have too.
The encouraging thing he told me was that since I've had a good remission run that bodes well for another and eventually it should stick. I know my immune system is getting stronger so I'm going with that. 😉
Take care…..kim
Kim…I'm so sorry for the relapse. 🙁 I know you will be in remission again and knock this thing out! At least now you aren't in the beginning of SD and struggling to find answers to feel better. You know the route you need to take and it's gonna work for you again. Sending good thoughts your way 🙂
Kim
I'm sorry to hear that. Would you mind sharing your protocol this time around? Knowing that you already beat this back, I'm sure you will do it again.
Which test is availble for strep, and is it only accurate as you are feeling the effects of strep?
Donna RA and Lyme
[user=40]Kim[/user] wrote:
Well, the Remission honeymoon is over for now as I seemed to have Relapsed a bit. :doh:
Kim,
I was anxiously to hear how the visit was going with you. Thanks for keeping us updated. It's great that Dr. C is very positive about your future outcome. It's sad that you are having to deal with relapse. Let's hope the treatment is going to be the grand finale to end this saga once for all.
Hope you will tolerate the medicine well.
Sending the positive energy to you!
JB
Hey Bud,
I am sorry you have to join the pill and tablet club again.;)
It great you noticed it slipping back though.
Babs doesn't have a chance with a trooper like you.:)
x Roz
Oh Kim. Thanks for posting an update and sorry you are back on the medical merry-go-round. But, hey, you did have a very good ride, you know how strong your immune system now is and that bodes well for this time around. Hope the H part is over and done with quick smart. 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,
I am so sorry to hear that you need to go back on antibiotics and I hope the herx is not horrible. What does he mean about the strep? Ryan strep screen was positive and his titer is 1:200.
Sue
Kim-you'll do whatever it takes and be back off antibiotics in no time. Whatever it takes, girl, whatever it takes!
~jen
Oh, Kim, so sorry to hear you are in the other R now. It sounds like you have a plan and I know you will do whatever it takes to get back to the good R.
Best wishes, Theresa
Kim, sometimes life is just not fair :(. What a bummer :angry: :angry: :angry: !!!
I bet you'll be able to kick it back into “r” in no time!
I'm curious, why do you think babesia has resurfaced? It's kind of daunting to think it could come back, when you think you've kicked it long ago. I know my llmd wants to add larium to my treatment, and I know Parisa's husband did great with clindamycin and qualaquin.
Maybe with all the other “cleaning up” of your system that you've doing, it released some hidden bugs….
nancyHi Kim,
I am so sorry to hear you have relapsed. But I know with your determination and “whatever it takes” attitude, you will bounce right back. I am curious to see what your new protocol will be as I have a very high strep and stubborn strep titre. Hope all goes well and the herxing won't be too bad!
Kim,
Sorry to hear you have had a setback, but.. the good news is.. you are SO far ahead of the game.. I know you can get to a PERMANENT “R”.. and you will. 🙂
Hang in there….
Connie >^..^<
[user=40]Kim[/user] wrote:
Well, the Remission honeymoon is over for now as I seemed to have Relapsed a bit. :doh:
This news certainly has me sitting here dumbfounded!! Just not fair!!:X
I hope you are wrong and the abx won't have you feeling like crap for the next six months.
You're in my prayers–keep us posted!
Take care,
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?
Hi Kim that's sure a bummer:crying:
Thanks for sharing with us and for your terrific attitude:roll-laugh:
What comes to my mind immediately is the little information I know about “biofilms”. If I understand it right these pathogens we are all fighting (bacteria, fungus, others?) seem to live their lives in little communities or houses called “biofilms” and that is why they are always with us. Biofilms seem to be sort of a safe place for them where our immune systems can't reach them and they are also protected from antibiotics. They apparently live in these protected “communities” and sometimes get out and wreak havoc in our bodies.
There are people who research how to break down biofilms so that our immune system can get to the little critters for us and do its job. The whole concept of biofilms helped me understand why we can get better and then have a “relapse”. I think your story is a good reminder that we all need to remain aware of the possibility that we need to keep a lookout and to get on top of things quickly when we sense changes. I am taking some enzymes that my doctor said MAY help break down these biofilms there isn't enough information yet to know for sure. I think I will ask about Lyme testing for myself again too since that seems to be helpful for so many people.
Thanks for your insight and your courage!
Merla
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