Any other Lymies out there?

faerywings

Hey there to any Lyme-Friends (or fibro/RA/CFS..... all very similar!):)

I was dx's last month with DCIS and just had my first appt with the surgeon. I am waiting for my BRCA results but will most likely be having a lumpectomy with radiation and hormone therapy afterward.

I have Late Stage/Chronic Lyme, Bartonella and Babesia (that one seems to be gone thank goodness!). I have most likely been infected since the 1990's and have been in treatment since 08. My husband has it too, and both of my teenage kids. He is disabled from it and both kids have gobs of school issues. But we still keep putting one foot in front of the other.

I spoke briefly to my surgeon about how the cancer treatments might affect the Lyme, but she wasn't sure since she doesn't have any of my lyme info. I see my llmd next week and she told me to definitely go over all of this with her and they can work together.

I am mostly concerned about how I am goign to deal with fatigue. I get so worn out as it is, and any stresses make my lyme flare. Plus I have a very high rheumatoid factor so I am always inflamed and achy. 

I would love to hear about how anyone deals with chronic illness on top of a cancer dx. How do you  coordinate it all? I was hoping to get on IV abx this year now that I have insurance that will cover it, but am I going to be able to do all of that, physically,mentally-- or will all of that make me more insane?

Thx!!

AnnieBear

Faerywings - Hi!  I looked at your head-line on the post and thought you were looking for people from Britain since they are sometimes called Limeys!  Maybe if you change the title of the post you might have someone post?  I hate to see a post that no one responds to ! ! ! ! !   Hope things are going well for you.

Srh242

Hi :I also have lyme and co.

faerywings

Annie- oops! Never even thought of that.

I have no idea how to change a subject line, so I hope that it doesn't matter too much.

srh242-- have you had any issues treating both at the same time? I had my llmd appt yesterday, she wants to see me on IV abx before the surgery but of course my insurance co is giving me a hard time, and the hospital I would need to go to is giving me a hard time and well, you know how that all goes. Just ugh.

Srh242

hi: sorry I didn't repply before . I had hyperthermia in Germany  for Lyme and cancer. My oncologist doesn't want me to do any more antibiotics for Lyme. What are your Lyme symptoms?

faerywings

Srh- now it is my turn to apologize, I have been running crazy between all of my appts and kids' lyme appts and working and, well, life LOL!

I hadn't heard about hyperthermia treatment so I had to google it. pretty cool! Did it help a lot? i wish we had a better range of treatment options here in the States.

I have the full gamut of symptoms but primarily joint pain, fatigue and neuro stuff. My Rheumatoid factor is very high, and my brain never seems to want to work like it should.

My llmd is concerned about my immune system not being able to fight the lyme and is putting me on IV abx. I was able to get a PICC in last week, now I am waiting to see if insurance will cover the abx although I doubt they will. If they don't I am going to have to pay out of pocket, which sucks, but if it will help keep the lyme in check, I'll do what I have to do.

Double-Trouble

Yes! 

Fatigue:  YOu know better than most that fatigue is a seroius side effect of Lyme and that to 'push through" is not in your best interest, ususally resulting in negative outcomes.  Consider it your mantra as you go through cancer treatment as well, and make no appologies for laying very low when needed.

Coordination?  PRIORITIZE.  Cancer is the BIGGEST demon right now.  Surley Lyme will act squirrley while under chemo; in fact I have had sooo much pain with Taxol (joint, muscle, all feels very lymey) and my doc was beating his head against the wall because no pain meds were touching it.  Turns out one of my Lyme meds ( also used to block narcotic effects for drug addicts) was happily doing it's job with the pain meds I was shoving down my gullet.  A new pain management plan had to be implimented to accomodate my Lymey self. 

Adjust and accomodate, but distincly prioritize that cancer is your number one foe right now, IMO.

Best!

faerywings

hey there D-T! Nice to meet a fellow Lymie ( hope that you are not offended by the term, I do know that some people are but I mean it very lovingly).

Wow, that is crazy about the pain meds/Lyme meds fiasco. That must have been brutal. I am veryveryvery time10000 lucky that I won't have to do chemo. I had a lumpectomy last week and wowza, the exhaustion is like pre-treatment/early herxing days. That bone-crushing exhaustion where it makes you tired to breathe but no amount of napping seems to help-- YLWIM? I am finally feeling a bet better but even being out of the house for a few hours wipes me out. I guess it take a while to get used to it all.

I have an appt with a RO next Friday-- did you have any issues with rads that I should make him aware of or ask him about? I am so sorry that you had to go through all of that and chemo too. I will need to be on hormone therapy which means my liver is going to hate me even more. What did you do for detoxing while on chemo and lyme  meds?

Sorry for all of these questions but I haven't had much luck finding others online.

Hope that you feel better too! xo

Double-Trouble

Hey there....No prob with "Lymey"; it's a verb, noun, whatever fits among Lyme sufferers. 

Do you have active Lyme? Are you currently under treatment?

My Neurologist, Integrative M.D. and Onco were all in agreement that I stay on a 'maintinance' dose of Lyme tx during chemo treatment.  a few minor adjustments were made in terms of suppliments, mostly taking OUT the items that were for detoxing and antioxidizing. Chemo is a toxin and one does NOT want anything minimizing it's effect, and some of those supps really can mess with it. 

My I.M.D. has changed my adjunctive care to focus on cancer at this point.  When tx is finished we will mop up the mess with toxin removal et al.  Aaaaaand run a LYme test to see what was shook up during this nightmare.  Interestingly, when I look back, my first REAl 'symptom' of the cancer was that the Lyme had relapsed after a good stretch of remission.  Felt lymey-lousy and found a lump within 2 months.  My doc says he has had three long-term Lyme patients come up with unusual cancers in the last 6 months.  He's afraid there may be a point where Lyme has damaged the immune system to a degree where it simply cannot rid the body of the usual errant cancer cell that develops in us all from time to time. He's not ruling out a connection.  Talk to yuor LLMD and see what he/she thinks.

So, You'll get radiation to the tumor bed from your lumpectomy?  that's prob a good idea, but I tend toward an agressive approach.I'm in my 5th chemo round of 8, which followed a double mastectomy. I ws jsut told that I'll have to wait 4-6 weeks to get my mojo back before I can start radiation.  I'll have 6 weeks rads.  Make sure they give a 'boost' to yuor inscision site.  The inscision line is the number one site of reccurrence (keeping in perspective that reccurrence risk for you is low). Sounds weird, but the fact is, any time cancer is 'dragged' through a field of tissue there's potential for randoms cells to park themselves along the way.  Apparently they like to hide behind scar tissue, as in the incsision.

Read up on radiation and follow all the recommendations about taking care of your skin.  I have my trusty aloe plant ready to go, no kidding. 

Yeah, so, call me a snoop.  I saw that you feel a little guilty about having little old fluffy DCIS.  Listen:  My 8 year old son was born with stage iV cancer and survived.   I had loads of survivors guilt watching cbabies and tots just like him die around us.  And you can bet I feel like a jerk complaining about my cancer knowing that it-in all it's agressivness- is garden variety breast cancer. Despite different prognosises, and, sometimes, sadly, different outcomes, we ALL share a singular moment, and that moment is when we hear that we quite possibly have been 'short-listed' in this life.  That alone means you are in 'the club', like it or not.  That alone is reason to celebrate that you have avoided the scythe that you saw very clearly swipe close to your head, a moment none of use expect to experience till much, much later (and rightly so). You had cancer. Period. GO to Relay and represent yourself.  ((hug))

faerywings

D-T-- oh wow, that was an awesome post. My LLMD has me on IV Claforan right now. Mt immune system is basically shot. We estimate that I have had Lyme and co's since the 1990's. My first pg seemed to reactivate it and then my second one put me over the top and I never bounced back since. (my dd is now 15 so its been a long time of feeling crappy). My dh got very sick in 2003-4 but wasn't dx'd with Lyme until 2007. That is when we knew we had to get me and the kids tested . All positive -- fun fun fun!)

I hope that the chemo does not make too much of a mess with the Lyme for you. I cannot imagine how much your body must be fighting you. But it sounds like you have an awesome medical team. That is really interesting that your dr thinks it possible that the weakened immune system could play a part in cancer.

Thank you so much for your input and good thoughts. I am glad to hear that your son is doing well!

Hortense

I came down with a new case of Lyme a week after my first chemo infusion, not a flare up from my old, long standing Lyme problem. I had no idea that was what it was until my husband insisted I see the local doctor for a knee that was killing me. I usually get aches and neuro symptoms when my Lyme acts up, so didn't suspect Lyme when my knee started to hurt. When I could not make it up the stairs because of sharp knee pain, he knew it wasn't chemo.

My knee was very swollen, but so was the other one which is why I thought it was a chemo side effect. The doctor drained the swelling and had it tested - it came back positive for Lyme, plus put me on Amoxycillin which my oncologist said was alright to take, and the symptoms cleared up after about a week or so.