Does anyone feel like they have th flu 24/7?

I know we feel differently in terms of symptoms from these infections. I am just curious if others are walking around feeling ill all the time.... light sensitivity, zero appetite, and generally feeling sick. Thanks for your feedback.

Hi Evanston,

I've been so weak, and mentally impaired, I haven't posted in sometime.

When I saw your post, I had to respond.

Yes, exactly as you describe, that's how I explain to others.

The worst flu 24/7 with an extra bonus of feeling like I have the worst hangover ever. Ongoing for 2 years.

Today, I sat in my recliner and was too weak to lift my head. I pray that we all find relief, no matter how small an improvement soon.

Congratulations on your treatment plan. I'm excited for you.

Hi Evanston1,

You can add me to the list, too. Extreme fatigue has been the most persistent symptom and often (not always) the most bothersome. At times, just standing is difficult and I feel like I'll collapse.

My most recent illness began in September 2013. The other issues I've dealt with, that I can recall, have been:

- Nausea
- Low appetite
- Low energy, tired
- Frequently wake during night
- Waking tired and unrefreshed
- Poor memory
- Brain fog / problems thinking
- Trouble finding words
- Difficulty making decisions
- Recurring cough (four years)
- Coughing/sneezing make me lightheaded
- Hands/feet often icy
- Pulse sometimes feels slow/weak
- Frequent dry/sore throat
- Voice raspy, cuts-out
- Thinning of outer 1/3 of eyebrows
- Dizziness, headaches
- Muscle/joint aches, knees/neck “crunch”
- Stiffness in neck/back
- Restless legs
- Sensory overload / easily startled
- Itching when I get warm
- Sick around time of full moon
- Longitudinal ridges on nails
- Dry, cracked heels
- Anxiety
- Chest discomfort, palpitations
- Air hunger
- Twitching in left eye
- Tinnitus in left ear
- GI disturbances
- Shaky hands
- Muscle loss

Otherwise, I've been great.

At times, I've had many of the above symptoms concurrently. At present, thankfully, several of them are somewhat improved. Others (such as cold hands/feet, dry/cracked heels, itching when warm, and eye twitching), aren't really a bother at all. I hope I didn't jinx myself.

As of this writing, I'm still trying to recover from what my Doctor says is an upper respiratory infection. It's been almost four weeks now and I cannot seem to completely shake it. It started like a typical cold, got really nasty, seemed to be improving, then, whammo, it flared-up again.

Over the past four years, I've had "only" five rounds of antibiotics. (see list that follows) It started when I got very sick in October 2013 and was sick for seven straight weeks.

1. Cefdinir: Prescribed for an alleged bacterial infection in my ear (no testing by the Doctor).
2. Azithromycin: For the same alleged infection. Perhaps a week after finishing Prescription #1.
3. Doxycycline: After tick bite. Non-LLMD prescribed 10 days. This was 14 months after Prescription #2.
4. Doxycycline: Saw LLMD and was prescribed extra 15 days. This was two weeks after Prescription #3.
5. Doxycycline: Prescribed 10 days for Chlamydia Pneumoniae. This was 11 months after Prescription #4.

Really, I need to put that last part in a new post, along with other details, and get some feedback from this community. My current LLMD wants to get me on a regimen of four antibiotics on a pulsed schedule. But, I keep wrestling with that idea. Doing nothing isn't getting me anywhere, but I worry that going so heavy on antibiotics might make some things worse and possibly create new problems.

*sigh*

Sorry for the long reply. I have too much rolling-around in what's remaining of my brain.

To echo PurrrsianKitty's sentiments, I pray for an end to all suffering.

The Dude

Post Edited (The Dude Abides) : 10/9/2017 10:14:16 PM (GMT-6)

Evanston1 -

I felt horrible for probably the first year of tx. Then I got into a cycle of improvement and then herxing and recovering and then ramping up treatment or adding in something new, and starting that whole cycle over again. Almost 4 yrs later, that cycle oscillates at a much smaller range (or the lows are less extreme and closer to "good" than "horrible" but I still have periods where I'm herxing because I'm still adding in new things, reaching new levels of doses.

Now, hopefully most people aren't addressing as much as I am and damage from 16+ yrs without a dx but there's something to be said for ratcheting up your protocol slowly and steadily.

You might look into high viral loads - whenever I lapse with my antivirals, the flu-ish feeling is the first clue that I need to refocus.

-p
-p

Yep> the ENTIRE month of September. Id been on Alinia and then added minocycline. And WOWSA i could NOT handle it. It was most def. Like the flu PLUS another horrible illness.

I took a few weeks off, and am starting back on Alinia>then will add doxy back in, in a week amd am NOT looking forward to that-uhg!!!

mpost said...

The Dude Abides said...

1. Cefdinir: Prescribed for an alleged bacterial infection in my ear (no testing by the Doctor).
2. Azithromycin: For the same alleged infection. Perhaps a week after finishing Prescription #1.
3. Doxycycline: After tick bite. Non-LLMD prescribed 10 days. This was 14 months after Prescription #2.
4. Doxycycline: Saw LLMD and was prescribed extra 15 days. This was two weeks after Prescription #3.
5. Doxycycline: Prescribed 10 days for Chlamydia Pneumoniae. This was 11 months after Prescription #4.

may i ask why haven't you tried at least a few months with steady antibiotics, without breaks ? this does not look like a serious treatment, 10 days of doxy ? then 2 weeks break ? you are not going to get well on these regimens. Bullet 4 says doxy 15 days prescribed by an LLMD. Sorry but that person is not an LLMD, 15 days of doxy ? That's not even according to IDSA/CDC rules which say one month... LLMDs usually use ILADS which recommends, you know ... many months ... certainly not just 15 days, and certainly not just monotherapy with doxy...

Hi, mpost:

Albeit delayed, thank you for the question. The two main reasons I haven't tried a few months of steady antibiotics without breaks are:

1. Because of what I've read (on this forum and elsewhere) about the use of multiple, long-term antibiotics.

I'm not suggesting that what I read was 100% true in every case for every person, but it seems the main concerns are damage to the gut and possible antibiotic resistance. There are also folks that have been on antibiotics for years, and, when they stop the antibiotics, they relapse. Again, I realize nothing is ever as neat and easy as a sound bite. Everything is nuanced. People have also reported healing with antibiotics.

2. Earlier this year, I had some doubts about having Lyme Disease.

My LLPA (not to be confused with the LLMD I noted above in Item #4) seemed to think I did, based on my history (which includes a tick bite), symptoms, and some general labs. My LLPA works part-time in Dr. Jemsek's clinic and has had Lyme Disease, too. So, I suppose I shouldn't have questioned her knowledge and experience. It was in May of this year when I wrote THIS POST that included some lab results and I received much helpful feedback from Girlie and Pirouette, among others. Since then, however, I've not really done anything. Part of the reason is fear and part of the reason is uncertainty where to start.

I've seen so many Doctors and had so many lab tests that the results are somewhat scattered. I recently tried to load everything into an Excel spreadsheet, so I could trend lab values over time and share the data among my various Doctors. That way, hopefully, they could see the bigger picture.

Here are some screenshots of some portions of the spreadsheet.

Bacteria Activity
bit.ly/2gfC8aO

CD57, CO, CBC
bit.ly/2z0YcO6

Virus Activity
bit.ly/2y3NzvB

At this point, I'm about ready to give-in to antibiotics, since I'm not doing much else to get well. about four months after my tick bite, I had taken Dr. Rawls' "Restore Program" for several months. I slowly started feeling a bit better, but stopped the supplements, due to the monthly cost. Now, in hindsight, I realize that was shortsighted and foolish.

I know there are other plans like Byron White Formulas, Beyond Balance, Jernigan Nutraceuticals, NutraMedix (Cowden Support Program), and probably more. But, I don't feel that my brain works well enough to research all of them and choose the right one. I'd considered contacting a Buhner Herbalist, but, again, too much for my brain to handle.