Lyme Disease, Shingles and Other Microbial Conditions For Lyme Disease, Shingles, Herpes and other microbial-induced illnesses.


advertisement
Reply
 
Thread Tools Display Modes
Old 09-13-2016, 01:19 PM #1
JimJamJones JimJamJones is offline
Junior Member
 
Join Date: Jan 2016
Posts: 32
8 yr Member
JimJamJones JimJamJones is offline
Junior Member
 
Join Date: Jan 2016
Posts: 32
8 yr Member
Default

Quote:
I've been meaning to post another update, but my job has been working me to death this summer to the tune of 60-70 hours per week. One year ago I could barely work 40 hours a week and I was pretty sure I was going to stop working entirely. What a difference a year can make.

I've done 1 year of oral antibiotics and I've seen many improvements. However, my improvements have recently plateaued. I took another Lyme test (iSpot) one year later and it is still positive. I still have paresthesias all over my body (less than 1 year ago), I still have some burning skin (it's much less now), I still have heat intolerance (it's better than it used to be), I still have facial and throat pain, and I still have disequilibrium. My hyperacusis and ear ringing have not come back, which I'm so grateful for. I still have bouts of fatigue, but I'm stronger than I was last year.

I've made a difficult and expensive decision to get a PICC line and try IV antibiotics. There are many risks and no guarantees by taking this route of action, but this is the only approach that got some Lyme patients well. I'm only 40 and I have a lot of life ahead of me, so I feel that I have to give this a shot.
wow, thats great to hear youve made such an improvements, even if its not complete yet being able to go from barely working 40 hours to almost double is excellent! Youve come a long way Please do take care not to over work yourself though, its easy to do!

I can totally understand your decision to push to get back to 100% though by using the PICC and IV, its a brave move but im sure youve calculated the risks and it is somthing that i think i would consider myself if i were in your position

Quote:
There might be a worsening of symptoms, but you should eventually get some small improvements (or at least I did). If Lyme/co-infections are indeed the cause your symptoms, a few weeks of doxy probably won't be the cure. You will have to find a doctor who is a LLMD or some clinician that is Lyme educated. I'm happy that your regular doctor at least is giving you something.


yeah, this is what i am reading from all the material, that i need to get a proper LLMD. Im going to see how it goes with this round of doxy and go from there.

Unfortunately my symptoms have continued to be worsen to some extent, today that my whole left leg was feeling very strange, kind of a mixture between cold and tingly! quite weird. I have noticed something interesting though, in that my fingertips, specifically on the areas where i have allodynia on them have dried out, so something definitely seems to be happening on the right areas at least!

Also, you mentioned hypercausis and thats something i didnt know could be a symptom, that was actually one of the first symptoms i had several years ago, but i would never have considered linking these things together. very interesting!

did you have any sort of time frame between when you started treatment to when you started to feel better?
JimJamJones is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
madisongrrl (09-13-2016)
Old 09-13-2016, 09:37 PM #2
madisongrrl's Avatar
madisongrrl madisongrrl is offline
Member
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
madisongrrl madisongrrl is offline
Member
madisongrrl's Avatar
 
Join Date: Jul 2014
Location: Midwest
Posts: 584
8 yr Member
Default

Quote:
Originally Posted by JimJamJones View Post
wow, thats great to hear youve made such an improvements, even if its not complete yet being able to go from barely working 40 hours to almost double is excellent! Youve come a long way Please do take care not to over work yourself though, its easy to do!
Yes, I'm putting my foot down this week to all these ridiculous hours I'm working. We have a new director and she really is something.....and it's not something good. She doesn't seem inclined to hire enough people to get the work done so I'm going to try to keep it under 45 hours from here on out. If I only had a money tree that grew in the back of my yard....

Quote:
Originally Posted by JimJamJones View Post

yeah, this is what i am reading from all the material, that i need to get a proper LLMD. Im going to see how it goes with this round of doxy and go from there.

Unfortunately my symptoms have continued to be worsen to some extent, today that my whole left leg was feeling very strange, kind of a mixture between cold and tingly! quite weird. I have noticed something interesting though, in that my fingertips, specifically on the areas where i have allodynia on them have dried out, so something definitely seems to be happening on the right areas at least!
You can email Ilads.org and they should be able to send you a list of doctors in your state. That is how I found mine.

Hang in there with the doxy....as long as it isn't giving you crazy symptomatic neuropathy flairs. Don't be afraid to back off the antibiotic for a day or two, if it's causing you more pain. You could ask your doctor to switch the doxy out for something else; however, he might not do that since he is a conventional doctor. Treat yourself well, get some good nutrition in and get some ZZZzzzs. Do you have Raynaud's going on with your fingertips? I did when my symptoms first came on.


Quote:
Originally Posted by JimJamJones View Post
Also, you mentioned hypercausis and thats something i didnt know could be a symptom, that was actually one of the first symptoms i had several years ago, but i would never have considered linking these things together. very interesting!
Wow, you too? I feel like we are in some small, special club...that we never wanted to be members of. Even on mainstream hyperacusis websites, they list Lyme as a cause. I've come across a few blogs with people complaining of this symptom and sometimes facial nerve pain (trigeminal/atypical).

Quote:
Originally Posted by JimJamJones View Post
did you have any sort of time frame between when you started treatment to when you started to feel better?
So within the first 2 weeks of taking doxy (and LDN), my hands felt like they were swelling and burning less. It was subtle, but I type on a computer for a living so it was noticeable. After 3 months, the burning on the back of my head went away and visits me infrequently now. Between 3-6 months, my foot burning lessened to the point where I was wearing shoes again. Prior to this, I had to slip my shoes off during work since by feet burned so badly. Between 6 months and 1 year, improvements slowed. I can sort of, kind of lift weights sometimes. My body doesn't really twitch much anymore. My face burns less now. My hands are 100% resolved...free of pain entirely. I have a long way to go but I'm so grateful for what health that I've gotten back.
__________________
  • Gabapentin, Nortriptyline, & Low Dose Naltrexone
  • Methylcobalamin/Methylfolate, & Vitamin D3/K2
  • Phosphatidyl Choline, Phosphatidyl Serine & Probiotics

Last edited by madisongrrl; 09-13-2016 at 10:22 PM.
madisongrrl is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
JimJamJones (09-14-2016), mrsD (09-13-2016)
Reply

Tags
doxy, doxycycline, reaction, read, totally


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Numbness below elbow (slight) and numbness in index finger and thumb. Mebany New Member Introductions 7 11-28-2012 12:10 AM
Doxycycline - Help Ellie Medications & Treatments 15 03-22-2012 12:14 AM
Doxycycline efficacy n advice responses please. KarenB23 Medications & Treatments 0 03-21-2012 08:25 PM
Doxycycline slows progression of osteoarthritis SarahO Arthritis 1 04-25-2008 06:44 PM


All times are GMT -5. The time now is 07:15 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.