Good news to share!

[Maz]

[user=86]Susan Lyme/RA[/user] wrote:

Hey! Count me in the celebration! Whoo-Hoo!  Those stinking #s  matter to me too.

Maz, I hope those # drop all the way to normal for you real soon.

 

Susan, thank you so much for your kind words! As much as we don't want those numbers to have power over us, it's hard not to let them and I'd be lying if I didn't jump for joy when the anti-CCP came down by that much!!!! Crazy, huh?

I've been wondering if you were able to keep your “baby,” as I know that was weighing heavily on your mind. So glad she is still with you….and, if you had to hurt your ankle, then at least it was while brushing her!!! How weird is that, that it relieved your persistant pain instantly like that. Could there have been a cyst or nodule that was burst in the process, do you think? Well, whatever it was, just glad it's gone for you now.

Peace, Maz

[Patti D]

Hey Maz,

I had those crazy pins& needles on & odd all weekend so finally finished Pamela Weinthraups book this morning. I proceeded to call the only LLMD in our state for my first appointment which isn't until December 1st:shock: Wow. Who would have thought!! I am going to try for some reimbursement from insurance as it looks like it is going to be pricey. He sees people according to the receptionist from all over the world with Lyme. I am going to keep my rheumy appt for Oct and have my bases covered. Hopefully the rheumy will do some xrays and finally check for joint erosion. I will keep my fingers crossed, call on all of the saints for the sick for intercessory prayers and throw it out to the “universe” for positive energy reinforcement:roll-laugh::roll-laugh::roll-laugh: that my little pill, mino has done it's job!

We had storms last night too so think I may have been herxing, my usual storm coming on herx.

My book review is as follows: We need some large sums of money to run some quantifiable & verifiable studies on lyme treament, call it a reference point. All medical treatment should be patient centered and this is no exception. Chemotherapy is toyed with on a routine basis but yes if it is a teaching hospital there is protocol to follow with double blind studies etc. Is there any teaching hospital in the entire country that has picked up lyme for its main focus?? I thing not. So until all of the doctors quite fighting on the play ground and quit trying to “one up”each other we will remain in a quagmire. That is a lot to swallow.

On a positive note, this book taught me that even though I am not being treated right now by an LLMD I am using an appropriate protocol of low dose antibiotics which LLMDs use so I have not wasted any time with treatment beginning. This treatment may get to a holding pattern but just like I had originally thought, getting on mino verses methotrexate was a good idea. I said the doxy worked so good but only lasted a short while, the duration of the treatment one month & maybe two months more.

 I wonder what would have been the case if I had been on the doxy for 4 months not one? Would the RA not have developed?? Who knows. I really believe I got the lyme immediately, within one month of exposure. Such thoughts to ponder but I am not going to waste any energy on the what ifs. I have got to move forward like everyone else on this board.:)

The computer is our worst enemy & best friend. Maybe with my “brain fog” at some point I can remember the directions for cutting & pasting. What you don't use, you loose!!!:roll-laugh: I can't text message either. I tell my kids don't waste your time with a text as I won't be getting back to you any time soon even though I love you:roll-laugh: My daughter just cleared all of the texts that have been on my phone for who knows how long. She is now on a mission to get me in the loop:?

Happy days!

Patti 

[Patti D]

Hi Maz & Trudi too and all of the other lymies,

I forgot to tell you in the last post what I found. We were cleaning out my father in laws and kept an old magazine, 1988 titled Wisconsin Natural Resources. It's a really nice magazine on nature in Wisconsin. In the middle of the September/October 1988 addition there was a colum titled,” Lyme Disease Update”

Most of the article was on ways to prevent tick exposure and how to remove a tick but the last paragraph said it all.” Antibiotics administered in the early stages of Lyme disease are usually effective at preventing RELAPSES. IF NOT TREATED PROMPLY, LYME DISEASE CAN CAUSE RECURRENT ARTHRITIS, NERVE DAMAGE & HEART PROBLEMS.” Unbelievable that in 20 years it has come to this!!!:X

Happy days!

Patti

[Trudi]

Hi Patti–

Let's hope the next 20 years will undo and correct the problem.  Informed patients will be a driving force–hopefully in educating doctors and holding them accountable for their diagnosis/treatment.

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?

[Maz]

[user=287]Patti D[/user] wrote:

Hey Maz,

I had those crazy pins& needles on & odd all weekend ….

Patti, that must have been wild finding that old magazine from so long ago about Lyme!!! You have a piece of history there to add to the ol' scrapbook! :roll-laugh:

Boy, you really do a have a long wait for the Lyme doc…Dec is a long way off. Maybe you could ask to be put on their cancelation list and get bumped up sooner? Certainly sounds like a doc in high demand – the best thing of all being that he is both AP and Lyme Literate!!! And you have my thoughts and prayers for both your x-rays and also that this will be covered by your BC/BS plan….at the very least in part.

You've absolutely covered your bases by being on AP!!! I dread to think how we would have ended up if we'd gone the immunosuppressive route. Doesn't bear thinking about. :sick:  And, though you are doing well on mino alone, it's not a bad idea to throw in a few safeguards to cover the corners. I think AP is important for rheumatics who know the Lyme pea soup is implicated. Rheumatic tissues are already in a hypersensitive state and, as I experienced on high doses, intolerable herxing can only make this worse. So, pulsing in some low dose combos will be a good thing overall. My personal feeling about this is that once the primary trigger is under control, any lingering associated diseases try to raise their ugly heads. Hence why relapse might be an issue down the road, not to mention wretched cystic forms of the spirochete.

Like you, I also sometimes ponder how I would have done if I'd been given treatment right away. My doc danced around waiting for a positive test for too long…6 weeks when I was obviously compromised – two clear EM rashes – and going through a difficult, immune-compromising time with my Mum's passing. There have been times when I felt like picketing his offices and throwing eggs at his windows, but I would have just looked like a crippled old mad woman! :roll-laugh: You're right, no point focusing on what went wrong and keeping our eyes trained ahead on getting well again…it's just wasted energy.

If this helps…to cut and paste….just point your arrow on where you want to start copying, click down on your left mouse button and drag it across the whole piece you want to copy.

It should appear highlighted.  

Then, click over the highlighted text with your right button. A drop down menu appears. Select copy (or cut if you want to remove the highlighted bit).

Now go to where you want to paste the text you highlighted and click your left button again to put your arrow in place.

Then, right click again and when the drop down menu appears again, just hit paste. It should paste the text you selected right where your placed your arrow.

Now, I sound like a real expert, eh???? LOL NOT! :roll-laugh:

Do hope your pins and needles have passed, Patti. I still get muscle twitches and toes that go numb for a few secs….but it's getting better with time.

Peace, Maz xoxo

[orchid]

Maz –

I just read this post today. Congratulations! That is great news. 🙂

[Maz]

Orchid, thanks for your message!!! 😀 Yes, it was a really exciting and uplifting moment to see that number finally come down! Interestingly, my progress in the past month or so has been really good, too, so not sure if it's my state of mind that's improved or what, as a result. The numbers aren't the be-all-end-all, but they do hold some power over our mental state.

I see my doc on Oct 1st and will get the next bloodwork results. It crossed my mind that it was a lab abherration, but I quickly put that out of my mind!! Actually looking forward to seeing if it's come down more. Will post results when I get them.

Thanks for your kind thoughts!

Peace, Maz

[Author]

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