New treatment!

That's quite a find -- an LLMD who had Lyme himself, is not too far away, and accepts insurance. That's pretty incredible. Congratulations. I hope you have great success.

Without mentioning the doctor's name, would you be able to share the city in which he works?

As for the pulse schedule, I'm not taking antibiotics (or herbs - it's a long story), but here's a pulsed schedule that one of the providers at the Dr. J clinic (in Washington, DC) uses:

• 2 weeks on antibiotics / 1 week off antibiotics
  
• Mon-Wed-Fri: (Omnicef 300mg #2 twice/day; Azithromycin 500 mg AM & PM; Minocin 100 mg AM & PM) for 1st and 2nd weeks
  
• In 2nd week on Thur & Fri, add Flagyl 500 mg AM & PM
  
• Do safety labs on Friday of the 1st week on program
  
• Do 3 rounds
  

Again, best of luck to you.
_

Post Edited (The Dude Abides) : 2/5/2019 11:15:30 PM (GMT-7)

Ah, got it. Thanks for getting me straight on both points. If I have trouble locating him, I'll definitely let you know. I appreciate the help. I hope you're feeling better soon and keep us updated when you can!

Girlie: I don't know/recall the amount and length of the various antibiotics you've taken, but how's your digestion and gastrointestinal tract? Do you have any issues? I'm guessing stool testing wouldn't help much, since the whole microbiome field is still pretty new.

As for the doctor telling Kentucky to "stop talking about that because no one wants to hear it," my guess is that was an attempt at "tough love." However, like you, I also think he should have offered assistance and discussed options. I sometimes have thoughts that I'd rather not have -- and, I get tired of "hearing" them in my own head.

Never taken flagyl but have heard that can cause some monster herxes. Given that you are drawing out symptoms it certainly could be a strong herx.

Glad to hear you found a local doctor with insurance coverage as well! imo better to give that a shot, see how it goes. Can always go back to Jemsek if this falls short. But at least you have a good aggressive protocol to work with.

Their comments about suicide are quite incredible though. Frankly, I believe if someone is in that state they need to share what they are thinking so that those around them can be aware and try to help them as much as possible. Bottling things up is the last thing you should advise somebody who is going through suicidal episodes! I mean, at least that seems like common sense to me, I don't know what the actual approach should be. But kind, considerate, compassionate is usually the way to go. Their attitude sounds like darn man your problems are boring the hell out of me, stop bothering me and just go jump off a bridge already. People often already feel isolated when they are going thru that stuff... need to build bridges to them, not push them towards jumping off of them!

k07 said...

I have no gi or digestive issues but apparently do have leaky gut. My issues are more malabsorption of vitamins/minerals, allergies. Not sure how it happened since I’ve always ate well. My ANA is now positive (neg before) with a mild positive rheum factor. I also had rosacea years before which is a big tip off. So I guess my point is you can have leaky gut or dysbiosis without the obvious stomach issues.

Good luck to you Kentucky and make sure you take a good probiotic!

I'm sure that is possible...but without a symptom/sign I'm not going to start going down that road at this point. Maybe at some point if I can't get past the last handful of symptoms I currently have....

I know this isn't quite what you were asking about, but I think it's important to point out that the doctor violated ethical and legal guidelines when he told you to stop talking about suicidal thoughts. (In my pre-Lyme life, I have trained hundreds of care professionals in the legal, ethical, and psychological handling of suicidality.) His response to you could (and arguably should) cause his license to be revoked and leave him criminally liable if you were to hurt yourself. Perhaps he meant to recommend a therapist because it's not appropriate for a spouse to act in the role of a therapist, but his actual response to you was extremely irresponsible.

You are seeking medical care for your infections. It's exactly the same thing for you to seek care for depression, anxiety, and any other mental health issues. I know that the stigma is real, depending on your family and community, but please don't let the ignorance of others keep you from the totally legitimate care of a therapist. People see dentists for check-ups every six months but not mental health therapists? Makes no sense if you think about it. I'm glad that you shared these feelings with your doctor - many, many of us have them from time to time! - and you absolutely should have a safe place to process and work through them. It's normal to feel awful about an awful situation. It's normal to want to escape from it somehow. Please don't take his words to heart, and share with someone whose only job and concern will be helping you to cope, move through hard times, and feel a little better about a very hard time. Therapy works.

Do a little research about the sorts of therapy that are out there and see what resonates. Most people find cognitive behavioral therapy (CBT) helpful and are familiar with how it works, but other forms of therapy might resonate with you more. People use EMDR for trauma and PTSD, which severe illness can cause. Personally I love internal family systems therapy (IFS) even though initially I thought it seemed silly. There's psychoanalysis, narrative therapy, expressive therapy, etc. Look for potential therapists on the Psychology Today therapist directory online; you can sort for location, specialty, insurance accepted, etc. Local doctors should have recommendations for therapists, too. Perhaps your spouse might want to go with you, or have a therapist of her own to have support for herself during this challenging time. Some therapists will meet online through video chat these days, also.

There's also the mind-body approach to chronic illness, which posits that you can re-wire the neural pathways that cause pain and symptoms by processing your thoughts and emotions in specific ways. Check out the app Curable online to see if that approach appeals to you.

Working through some of the stress of chronic illness, be it conscious or not, can reduce cortisol levels and inflammation. It can have a noticeable physical benefit for your immune system and symptom reduction. Good luck!

Sara (Lyme, POTS, ME, HPA axis dysfunction....)

Sara - thank you for your in-depth post.


The stigma IS real. I have never mentioned any of the mental health issues I had at that time with my PCP/GP because of the stigma attached.
I didn't want it written down on my file for the fear of being judged.'


It shouldn't be that way. Our brain is part of our physical make-up...and it's too bad that it's still got that stigma attached to it.
My brain was hijacked by lyme and co's. plain and simple.

Kentucky - please consider reaching out to a mental health provider.

The Dude Abides said...
Girlie:

I appreciate the detailed feedback on your (lack of) stomach/GI issues. That seems pretty remarkable and I'm glad you're not had any protracted issues.

As for the pending colonoscopy, I wish you good luck there, too. I've not had one and I'm betting the topic will arise on my next trip to my family doctor.

On one hand, some doctors say there's too much preventative screening (in general) that can lead to overdiagnosis and overtreatment. On the other hand, catching certain things early can result in a satisfactory outcome with no further issues. On the third hand , many procedures carry at least some amount of risk.

I hate uncertainty.

Dude

I have trouble deciding on whether or not....and how often to do the preventive screening - finally had my second ever mammogram several months ago. They are supposed to be every 2-3 years and it had been 5 years for me.
Of course my excuse is I don't want to radiate my breast tissue and potentially cause cancer. Valid concern? probably not. My husband's coworker was recently diagnosed with breast cancer - spread to some lymph nodes .....mammogram screening picked it up. In her case...delaying a mammogram a couple of years would not have had a good outcome.

"pending colonoscopy" - lol...it's been pending for awhile...and will continue to 'pend' I'm sure for quite awhile longer....

I'm glad you are getting great support from your wife, that is huge!!!

Those are some heavy-duty meds so it wouldn't be surprising if they were drawing out a herx. I'd just be careful with the flagyl and neuropathy, there can be issues with that. I don't know the ins and outs of the side effects of that med, but you did say you were pulsing it every two weeks right? so hopefully that amount should help hedge against the side effect potential. I think it's smarter to go with the pulse protocol, especially if you need to keep working right now you can't afford to get smashed into outerspace with this stuff. Even pulsing these meds will likely stir up some nasty herxes but hopefully it gives you enough breathing room to pace yourself.

I totally understand about the testing and being happy to get some type of confirmation via labwork. So much of this stuff is utterly nebulous and there is a lot of guesswork, so getting any confirmation (even if it is merely a hint) via labwork can be helpful.

Yeah, I definitely plan to continue testing.. I just for my own peace of mind. Could anyone tell me if those 2 bands are Lyme specific? Or what they could mean? I’ve tried doing some research on 66 but can’t find anything that goes into detail what a positive with that band could even mean. How do I upload photos on here? I’d like to upload some of my lab work for you guys.

Best I could find: http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

I have a link in my comment to the Rawls article I got it from. No clue if it's accurate to be honest.