Remission?

[tainabell]

Hi Road Backers,

So I haven't been around in awhile, I actually haven't even been reading because….hallelujah….I've been feeling better!  Its sort of a long, complicated story (but isn't it always? ;)), but here it is….

Some might remember when I was having a really bad time.  I just checked my journal, it was late February, early March.  I was having horrible itchy ugly hives, really bad nausea, and joint pains bad enough to be popping Advil several times a day just to be getting through.  Around that time I saw a rheumatologist who I thought was a LLMD, who turned out to be a proponent of ELISA testing and treating Lyme according to IDSA guidelines (Boo! Hiss!)  I was feeling pretty hopeless and contemplating going to another LLMD who was going to cost me $900 for the first visit, but I decided to visit with Dr. Y, my AP doc one more time, before I took the nose dive into expensive LLMD land.

When I saw Dr. Y, she was frustrated that the doxy dose I was on (200mg a day, which most LLMDs would see as a little low) wasn't working and took me off it.  We were drawing up another antibiotic plan and looking at my food journal, trying to figure out what we could change to make things get better.  She had a couple ideas 1) I should try a strong probiotic like VSL#3 (it has like 450 billion bacteria is used by docs to treat ulcerative collitis usually) and see if there was a yeast problem and 2) My problems could be complicated by a parasite and she recommended a parasitologist. 

So I decided to give option #1 a try.  I quit the doxy and added the VSL#3.  The first couple days off the doxy weren't good.  I was having all sorts of flares.  But then…things sort of started to ease off.  That was early March.  In early April, I decided to try exercising, just to see if my body could handle it.  Now I'm running two miles a day, Monday-Friday.  I also am playing volleyball with my old team again and doing pretty good with a sport that puts a lot of stress on your joints.     

All this seems pretty remarkable, even to me, and I have absolutely no idea what is causing it.  These are the options, I think.  

A)  The six (five?) month course of doxy sent my  Lyme into remission and that bad patch I had before I went off it was just the final death herx

B) I had a problem with yeast and that was causing everything and now the VSL #3 has mostly corrected it.

C) The bacteria are trying to lull me into a false sense of security. (Stupid buggers!)

The only other thing that I've changed is that I've cut down on table sugar, added more protein, and started taking 1 Zyrtec per day.  My hives have remained exactly the same, no better or worse, but they are much less itchy with the Zyrtec.  I've come to accept that they may be an autoimmune thing that is separate from the Lyme and friends, so I'm not too concerned about it.

All in all, I'm feeling pretty good, but I'm hoping this isn't the old pride goeth before the fall situation.  I know that Chronic Lyme is harder to fight than just a couple months of doxy, so its still in the back of my mind that I probably will relapse, but right now I'm feeling good so I'm just

So I just thought everyone on here know how its going….and I will keep you updated on how things go in the future!

[Kim]

Hey Jen,

You even dared use the  “R” word (remission)!  It does sound like you've made great progress so enjoy feeling better and ride this wave as far as it will take you.

I'll have to try your probiotic. 🙂

Take care…..kim

[m.]

I've gotten very good info from a GI panel such as the GI-2 from Diagnos-Techs. Tests yeast, bacteria balance, parasites, antibodies to gluten, inflammation, etc.

I scored rather high for a fungal infection, treated it, and follow-up testing showed the infection had cleared, and bacteria balance had improved. It gives me peace of mind to confirm this. Less guessing & wondering.

You can also run the IGeneX test to see if your Lyme has cleared. And the TARCI test to see if mycoplasma/chlamydia/strep is clear.

Congrats on your improvements!

[tainabell]

[user=40]Kim[/user] wrote:

Hey Jen,

You even dared use the  “R” word (remission)!  It does sound like you've made great progress so enjoy feeling better and ride this wave as far as it will take you.

I'll have to try your probiotic. 🙂

 

I didn't think I was being daring until you mentioned it!  Thanks Kim! 😉

Just a warning: VSL#3 is super super expensive.  I think it was like $80 or something for a months supply.  That's over $2 per day, ick.  But I must admit I do think its doing something.  I'm going on vacation on Friday and it doesn't travel, so I'll have to give it a break for a couple of weeks.  I guess then is when the true test of how effective is will go to task.  I'm going back to just my plain ole non-refrigerated probiotics. 

m. – thanks for the information about the GI panel.  That sounds like a great one – do you know which labs do it?  I've been having problems with my insurance paying for Labcorp stuff.  Can you get it done at Quest?

My mycos and strep tests were always negative.  I had a past chlamydia infection, but not a current one, so that wasn't the issue.  But as for the Lyme thing – can you have a “negative” Lyme test?  Once you are infected, don't your bands always turn up positive?  I was under the impression that remission from Lyme was diagnosed clinically.  Anyone know the answer to this one? 

[Maz]

Jen, thanks for sharing this is all really wonderful news and I send all good wishes to you that “long may your remission last!” 😀 You have done so much to support your immune health and made so many lifestyle changes that maintaining sustained remission could very well be real possibility for you. You're not under any delusions about the crazy nature of Lyme, but this will serve you well if you start to notice any backslides and you can get right back on to it again.

I'm not sure if it's worth re-testing for Lyme. If you go to this link for a read about WB interpretation, this LLMD says that the IGM can become repeatedly positive over time, as the infection waxes and wanes. My guess is that this is due to the pleomorphic nature of borreliosis and the cystic form, which hides and doesn't show up on bloodwork until it decides to spring back to life again. Until a cure is found, once a Lymie, always a Lymie, but the goal is to get and keep the immune system as strong as possible to keep it in check…and many, many people do! So keep the faith and do everything you can to stay healthy. Sometimes these life experiences wind up being blessings, in an odd way, because they force us to look at ways to become healthy that we might not have considered before.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

Don't forget your old friends here and please come back to say hi to us when you can, because you'll be missed!  And have a wonderful vacation – now you can go away and enjoy yourself to your heart's content – don't forget to enjoy every precious moment of feeling well!!!!

Peace, Maz

[Marie]

Wow, great news, Jen!  Congratulations!  Enjoy your vacation!

[tainabell]

[user=27]Maz[/user] wrote:

Don't forget your old friends here and please come back to say hi to us when you can, because you'll be missed!  And have a wonderful vacation – now you can go away and enjoy yourself to your heart's content – don't forget to enjoy every precious moment of feeling well!!!!

Thanks Maz!  Oh, I'll still be around….like I said before, I'm not entirely sure that this thing is done for yet. 

On enjoying each moment, that one I'm really taking to heart.  After having felt lousy on and off for two years, this whole feeling good thing is a welcome relief!  Its great to be able to appreciate so many small things that I may have taken for granted before, so I'm definitely going to take advantage while I can!  :roll-laugh:

[lynnie_sydney]

Jen – that's great news!:D So happy that you are feeling so well. BTW, a parasite cleanse just before my big overseas trip last year I think helped me feel so good for the duration of a pretty hefty schedule. I hope that my latest report will also give you confidence that the road may not always go in a straight line and that it may need tweaking with some occasional steps back, but that it is in the right direction. Enjoy this time! 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)

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