OT: Ella's saga continues; new comment and pics of Gus

Hi Everyone, I'm still absent from the Board, but thinking of you and your kitties. My Lyme symptoms cleared up, but during a week off the antibiotics (I ran out at 20 days) I developed new symptoms: extreme shortness of breath, a cough, and fatigue (worse fatigue than before). I have pneumonia!! (confirmed by a chest x-ray). So I'm back on the antibiotics (just as well, since I wanted my doctor to prescribe the full 4 - 6 weeks course to really knock out the Lyme Disease). I'm supposed to take it easy.

Gus is good. He climbed 6 large trees yesterday . We are all hanging in.

Hugs and scritches,

 

Sending love and extra prayers your way, Ella . Full quick restoring of your health

 

Sending lots of love and vines your way Ella!

 

Sending lots of hugs, prayers

 

Wishing you a speedy recovery from the pneumonia!

 

Glad to see Gus is working hard to entertain you while you take it easy. Many vines for your recovery.

 

Ella I'm so sorry to hear this. I hope you get better soon. Sending prayers. Glad Gus is doing well.

 

Oh no! That's a double whammy! Hope this round of ABs does the trick. Any pictures of Gus?
Liz

 

Ella, I hope you feel better soon ! Take good care of yourself to recover well !
Nice to see Gus is doing good!
We miss you !

 

(((((Ella)))))

Wishing you a speedy recovery.

 

Hi Ella, I've been missing here for awhile as my Toshiba laptop crashed after 11 years. I have a Chromebook which is working out semi okay. I saw in Carla's thread you were mentioned and kept meaning tp message her. So sorry for what you've been going thru. Katie and I send love and prayers for a good recovery. So glad to hear Gus is doing well and climbing trees.

 

Healing vines and prayers, Ella!

 

Wishing you to feel better soon and praying for a full recovery from the pneumonia and Lyme disease

 

Oh no! I’m sorry to hear that! Good news, at least, that they have a proper. diagnosis and are giving you the treatment you need. I hope you are feeling better soon!!! Hugs to you, Edward and Gus.

 

(((Ella))) oh my goodness, you can’t win a trick! I hope the antibiotics are working well and you start to feel better soon. Pneumonia can take a while to get fully over.
Sending many strong Aussie get better vines. Take care!

 

Thanks, everyone. I had a pretty good day today and hopefully this "better and better" trend will continue.
While I rested I watched today's stage of the 3-week bike race, the Vuelta a España. How I long to get back on my bike!!

 

Auntie Ella--
I'm sure glad that Rusty arranged for you to have a lifetime membership to KTSS! Sounds like you need it!
Purrs,
Chef Felix

 

Sending “work fast” vines for the antibiotic. So sorry about the pneumonia too. Let Gus do the climbing for the next little while.

 

So sorry to hear you're having round two of that horrible disease...Lyme's is really hard to shake...try to regain your strength...hope you'll improve soon Sending healing vines!

 

Sending you warm thoughts and healing vines Ella! I hope the AB's work quickly and you feel better really soon.

 

Just catching up on here, so sorry to hear about the Lyme Disease

Feel better soon Ella!!!

 

Hi Ella,
Hope you are on the mend. LD sucks. Been there lots of times (that’s what happens when ya live in the heart of where LD got its name). I hope the extended course of AB’s help. Are you taking probiotics?

OT: Sorry I’ve been out of the loop...been zonked out between the shop and what sure feels like some kind of chronic fatigue. Plus a 1 1/2 wks ago I caved in to pcp’s 2& yrs worth of pleas for me to have the pneumococcal vaccine. Big mistake!!! I was down and out with the whole catastrophe for a week. Ugh. I’m gonna try to catch up in the forum but it’ll likely be bits at a time.

Be well, hugs to you, Edward and Mr Gus the tree climber!
❤️ and healing vines from us all in Sootie’s Tribe,
Sina

 

Hi Ella,

We just got back from a three week road trip in the trailer with the kitties. My internet time was very limited, so I didn't get on the Board at all. I'm so sorry to hear you have Lyme Disease, and that it has led you to pneumonia. I hope you are much better now. Sending you healing vines, and scritches to Gus.

 

Love,Light and Healing

 

It's been almost a week, Ella. Hope antibiotics totally kicked in and are kicking the pneumonia. Best wishes for feeling better!!!

 

Hi Ella, wondering how you are feeling and recovering from the pneumonia. I hope all is going well. Katie and I send hugs and prayers for a full recovery.

 

Sending prayers and healing vines

 

oh my.... What a summer or you! I will wish you a speedy recovery. I hope the days continue to get better and better. You have such determination that I am sure they are. I have been through pneumonia once, a while back, and remember how fun that was. NOT! Fatigue is such an issue with that one. Wishing you well. The kitties here all send many many healing vines! Take care.

 

Just catching up, been away on vacation and tied up with family.

Hope you start feeling much better soon.
Scritches to Gus

 

Hi Sina, Bummer about your pneumonia-vaccine shot. I never had one and sure wish I had! I'm going to get the vaccine as soon as it is safe for me to do so (i.e., after I get over pneumonia!). Feel better and get enough rest. I'm just beginning to feel like myself again!

 

Hi again, everyone,
Thanks for your continuing support. I haven't been on the board because I've been "resting". After 6 weeks of antibiotics (they make your food taste terrible!), I am now on a short course of prednisone to calm down the inflammation in my lung. Yesterday was the first day I felt like my old self. I'm working on building up my strength (lost 15 lbs. of muscle!) and hope to get my breathing better so that we can do some paddling before it gets too cold.

On a brighter note, Gus is going through his second kittenhood. He just celebrated his 11th birthday with a haircut (the mats in his beautiful, long coat got really bad during the last few weeks). He lost 3/4 of a lb. of HAIR!!! He caught a chipmunk (I got him to drop it and it got away). He needs to lose weight (fat weight, not hair weight), but is hungry all the time. Here he is "after" the haircut!


And here is just before!


Thanks again. Hugs to you all and scritches to your kitties

 

(((Ella))) we were in Scotland when you did your first post that you were ill and I missed it. I’m glad you are improving but send you tons of healing light, snowflakes, vines, energy, and love!!!!!

Gus looks so Handsome!!

Tobey is making you some cimmamum chicken noodle soup. Don’t ask He thinks cimmamum makes everything better He said to send his favorite Auntie Ellabean special Tobey hugs and love and for you alone, he will come out of KTSS retirement to give you a special massage!

 

I'm glad you're feeling better. I hope you keep improving and your breathing gets better soon. Love the pictures of Gus. Sending prayers.

 

So glad to hear you are feeling more like yourself. I hope you can get a paddle or two in before it gets too cold.

Scritches to Gus. I can relate - I'm hungry all the time, too!

 

Good to hear from you, Ella, and glad you are on the mend and are resting. I do get the flu and pneumonia shots. I love that Gus is like a kitten at 11 years of age. He really loves you and Edward and showing he is grateful. Nice haircut, Gus! Lots of hugs and prayers.

 

Hi Ella, I hope you will get a fall paddle in soon.

Scritches to that handsome fluffy kitty.

 

Very happy to hear that you are starting to feel better!

 

How great that you got to Scotland this summer. That's on our bucket list. Edward is a big fan of Scotch whisky single malts.
Thanks for the healing light, vines, etc, and love.
Tobey, that cimmamum chicken noodle soup sounds great. Especially since I'll be able to taste it now that I'm off the antibiotics. KTSS always appreciated.

Hugs to you, Marje, and scritches for Tobey and Livvie.

 

Gus climbed 10 trees this afternoon!

 

Happy Belated Birthday to Gus! He's so cute with his new haircut and he's obviously feeling great, climbing trees like a kitten!
It's great to hear you're feeling better Ella, keep resting and doing what you're doing, it's working!

 

Glad to hear you’re on the road to recovery! Hope you are 100% soon!

At least you have had Gus for entertainment! He is super handsome both before and after his haircut.

Happy 11th Gus!

 

I’m so glad you are feeling better Ella.
I LOVE the before and after photos of Gus. He must be feeling good to climb 10 trees!

 

Happy Birthday, Gus! You are one handsome guy

 

So glad you’re feeling better, Ella! That’s a lot of floof, Gus!!

 

So glad to hear your feeling better!

 

Sending healing vines to you, Ella!!

 

Hi Ella! Long time no see - and I'm so sorry to hear you got bit by a tick! Scourge of the earth! They are terrible little critters. I can't see deer in the same way now - and I spotted 3 fawns with their moms in our front yard this morning.

Sienne sent me an email while we were also in Scotland, and having terrible phone problems. But I'm home now and wondering what I can do to help you. Yes, my daughter's suffered with Lyme and co-infections (Babesia and Bartonella) for a long time. She's 27 now, was diagnosed at 21, and now we know she was infected at about age 6.

Tick bites very often deliver more than 1 disease in one go. And contrary to popular myth, time attached has no bearing. It's been proven that they can transfer some diseases in as little as 15 minutes. I don't know where the myth that it has to be a long time has come from, but it's well-spread, and also inaccurate.

Just in case anyone else reading this gets bit - your best first strategy after removing the tick (by pulling out the head with tweezers or a tick-removal tool asap) is to save the tick for disease testing. It's easier, cheaper, and more accurate to test the tick than to test people.

Being aggressive immediately is the best tactic. Our doctor (whose son got bit in a Portland city park) says a minimum of 6 weeks antibiotics immediately after the bite. You're well past that. I'm unclear about your timeline - I know you were bit in April. Were you given antibiotics immediately after the bite? Or was there a delay?

Getting accurate labs is a challenge. Eventually, after several inconclusive tests from Quest and other local labs, we opted to go with IGeneX, which is known to be the best in the US. The reason diagnosis is so difficult is that spirochetes do not remain in the bloodstream - yet blood is what we test. Typical labs are looking for the spirochete. IGeneX looks for DNA evidence that a spirochete has passed through. There is another company that does something similar, DNA Connections, but in the Lyme Community, IGeneX is considered the best. I would simply go with them. There are also more than 40 varieties of Borrelia, and local labs test for 1, the most common in the US.

I would also get the test for co-infections. Michelle's got Babesia, which is like malaria. It's a cunning little bacteria that stays in the bloodstream. It drills into red blood cells, implodes them from the inside out, and keeps the coating of the red blood cell on itself like a little cloaking device. The consequence is that your immune system doesn't recognize it as an invader because it looks like your own blood cell. That's the most common co-infection and it's treated with anti-malarials.

My daughter also has Bartonella, which also is the bacteria that causes Cat Scratch Fever. She turned up negative on the test for this, but she clearly has the symptoms. One thing it does is tunnel in the skin, creating what looks like stretch marks.

The fact that you're on the east coast should make things easier to get treated, but I hear that's not always true. Lyme is everywhere now - although I can't tell you how many people have told me it's not possible to get it in Oregon. Yet we know where our then 5 year old had been, and she had to have gotten it here.

The controversy over Lyme is about money - insurers don't want to pay for a chronic disease, so they say it doesn't exist. There are 2 prime professional groups - ILADS (International Lyme and Associated Diseases Society) and IDSA (Infectious Diseases Society of America). You want information from ILADS. The other is populated by insurance company execs, and they have had a tremendous influence on the lack of research into chronic lyme. Dr. Richard Horowitz (from New York) is my go-to for accurate information about Lyme - he's on youtube and has a fantastic book out called "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease."

If you have symptoms, assume you're still infected. Headaches, migrating muscle pain (one day it hurts in your arm, another day your leg hurts), brain fog (feeling you're dense at understanding), extreme fatigue, are all Lyme symptoms. Babesia makes people anemic and it messes with your thermostat. My daughter will put 8 blankets on her bed then complain that she's both sweating and cold at the same time. This questionnaire might help you decide what to do next: https://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html It will automatically score it for you.

Borrelia passes into the brain within 6 months and headaches are often a first symptom in those who weren't cured right away. As you know, the blood-brain barrier makes it difficult to treat things in the brain, but it's not impossible. We've gotten a home hyperbaric chamber for our daughter to use daily - she's 1 year into what we expect will take 2 years to get her life back. We've done years of antibiotics, antimalarials, antiparasiticals . . . everything, and she sees a specialist once a month. If you don't have a good doctor, look into a naturopath. They are ahead of the game in the world of Lyme and tick borne illnesses. There is also a Lyme-literate-physician finder on https://www.ilads.org/patient-care/provider-search/ that could help you.

There are also some facebook groups - mixed quality of advice - for those with Lyme. This one is fairly good. https://www.facebook.com/groups/womenslymediseasesupportgroup/ I'm on one that is for people doing the newest treatment - Antabuse - that seems to kill Borrelia by interrupting its metabolic process.

Be wary of steroids - of course there are times one needs them - but they suppress the immune system and in people with Lyme and co, that can allow the other diseases to flourish. My daughter hasn't had a cold or flu in years because her immune system won't rise up to fight it. She does get flattened sometimes - maybe it's something like a cold getting her where she is just wiped out. Don't get vaccines right now either, if your immune system is suppressed by illness you can't make antibodies and they won't help you anyway. I know some with Lyme have had reactions to vaccines - we did vaccinate our daughter through all the childhood illnesses, not knowing she had lyme, but likely she didn't develop immunity and her doctor definitely doesn't want her getting vaccines now. Wait til you know you are well.

Hehe, you know me, I've written a book. Send me a message if I can help you more - you know I'd be glad to. I've lived in this world for 6 years now, and like FD, it's a whole other thing that you never knew anything about before you had to!! I hope you're doing well and that the antibiotics you had were enough to knock out the infection. If I were in your shoes right now, I'd get the IGeneX test for Borrelia and whatever co-infections are most common in your area, then go from there. It cost us over $1,000 out of pocket for that test, but that determined what happened next and gave us certainty where we'd had none before.

Big hugs, julie

PS, Thanks @Sienne and Gabby (GA) for letting me know!