So after my ultra positive post on how I will beat this 2 weeks ago, I'm now feeling a bit down. Likely because I'm on the road, abroad for work and not feeling that great.
Was hoping to get your input on my symptoms to ensure I'm on the right track.
I've been back on Rifampin and mino since early January after attempting a break in December. It didn't go well.
We aren't exactly sure which bug we are going after. I've had many of my current symptoms before. Most are very old sx. But none in a while.
Here is what is going on:
-I have a lot of sensations in my head/scalp, best described as pressure. It feels like someone is pushing on the top of my head with two fingers at times. Other times it is at the back of my head and upper neck.
-Ears sometimes feel full, usually with post nasal drip
-My jaw/TMJ is very tight. This is common when I flare. It is a weak point of mine.
-Tinnitus is worse, likely due to tension in jaw.
-Floaters are worse
-I get occasional, crawling sensations in my skull. Feels like bugs creeping along.
-When I have all of this, I am a bit detached/foggy, but can otherwise think mostly normally.
-Neck is stiff and creaking/cracking
-I feel worse if a move a lot of the muscles in my head (wiggle my ears, etc)
-It isn't really a headache..more like pressure sensations that come and go/move around.
-I get moments of feeling hot and have night sweats. Feel cold at night, then hot.
-Sometimes racing heart at night
-I've had insomnia a bit the last few weeks. Waking early or having difficulty falling asleep. This is NEW. I have always slept well throughout most of my illness.
-I have bladder / pelvic issues that are now much better (knock on wood) but come and go.
But it seems to contradict what others say about Babs. Other lists show maybe Bart.
I had a Fry smear a few weeks ago which showed a few biofilms with bugs inside, likely Protomyxzoa. Looking at the symptom list of Protomyxzoa, I have many but not all. No fatigue (yet) etc. I have recently started Ivermectin and Liposomal Artemisinin due to this.
I also recently tested IND on IgG for Bart. LLMD isn't sure about this since the result has been IND for a while.
I've had all of these before, but only for days and then they would resolve as I treated. Most recently the head pressure stuff was in 2012 when I started Hulda Clark Parasite cleans. This was followed by an increase in floaters. I had a lot of the same on ALinia and on Dr. K's garlic.
Not sure if this is a bug, or due to something else. This all started after I dropped garlic and mino and added Doxy. But also after I started seeing an amazing classic Osteopatch to fix my structural issues. Lately, it seems every time he straightens the muscles in my neck / back of head (gently) I feel this afterwards for days. Not sure why.
Thoughts?
[ 02-25-2016, 08:12 PM: Message edited by: bcb1200 ]
Posted by Blymey919 (Member # 47424) on :
Release of toxins?
Aside from an infection flareup - and besides treating each symptom specifically - the areas of your head, ears, jaw, neck, even pelvic area, that you mentioned are lymphatic drainage areas so it may be possible your lymph system is getting a little sluggish and you have more toxins and/or die-off being released.
As a daily addition to your routine it might be a good idea to do dry brushing, take a hydrotherapy shower (alternating hot then cold), do some breathing exercises and/or light exercise (walking, Qigong, Yoga) in the morning and after your structural alignments.
Additionally drinking lemon water and taking something like Chlorella can help with toxin elimination. Garlic is great for helping to eliminate toxins (plus helps break done biofilms) so you may consider taking it again. Red Root is also a potent support for the lymphatic system.
All the best to you and hope you find some answers and relief.
Posted by tulips (Member # 44773) on :
On my symptom list, Ringing in the ears is Lyme Borrelia. I take Ginkgo.
For floaters you can eat Red Salmon a few times a week or take Astaxathin. I stop tinnitus by taking a ginkgo pill once each day. It takes 4 days of taking it to become effective. If you can't take Astaxathin, you can eat RED salmon several times a week. Insomnia is listed under Lyme Borrelia and Babesia. I take Cats Claw for all Borrelia sx. I take Sida Acuta, Cryptolepis and Alchornea for Babesia. I take Liquid Melatonin for insomnia which puts you to sleep in about 30 minutes.
Posted by Tincup (Member # 5829) on :
Glad you are working on it and thinking it out. From your detailed (and nice) description I see Babesia and toxins at work.
Never knew Babesia could cause such severe insomnia, but it can, especially when too many toxins are in the mix.
Pressure in the head and bugs crawling along scalp also make me think Babesia.
As for the new doc, I'd mention it to see if he/she has an explanation. Could be opening up pathways to clear toxins that have been stuck in place a long time. ??
Hope that gives you some ideas to move forward from.
Posted by Tincup (Member # 5829) on :
Thinking more...
Might ask the new doc to slow up a bit so you aren't having that feeling afterward. Nicely, of course. See what they suggest.
Posted by bcb1200 (Member # 25745) on :
Thanks Tincup:
It's my fault, I'm the one pushing for treatment. I want to feel better NOW!
Yeah, I think this is likely Babs, or Protomyxzoa/FL1953 or other parasite. These symptoms are not new to me. I had them way back in the beginning before I was diagnosed after I crashed. I even have a post about it in May /2010 where I ask about pressure on top of head. It went away on Doxy/Flagyl and then Biaxin/Flagyl.
It came back for a few weeks in August 2012 after I did the Hulda Clark Parasite Protocol. First day taking the herbs I had all of this crazy head stuff come out. It lasted a few days then subsided over 1-2 weeks. I had incrased floaters after this.
I hate the way I feel now. This started in Nov/Dec and then got worse over Xmas/New years.
I thought it was a Bart or Brucella relapse, but now I don't think so. The only bart symptoms I have are very mild, occasional bottom of foot pain on my left foot that is 80% gone most times, and some muscle twitching. COuld be Brucella...and DBPEI has positive Brucella tests and has similar (although a lot worse) symptoms. But I was on a Brucella protocol when all this started. Don't get why that would happen.
So currently on Rifampin, Mino, and taking Ivermectin and now Liposomal ARt for the Proto/Babs/parasite/whatever.
I hate the way I feel now. I'm thrilled on one hand that my bladder/pelvic/prostate stuff is so much better. (knock on wood.) BUt hate hate hate the head stuff. I can usually think pretty clearly, but the pressure spots and tension in various spots of my head are a huge distraction for me. I worry I'm not performing as well at work (I am the primary bread winner.)
I've had a few good days the past few months wehre I feel no head stuff. Mid January, and then for 4-5 days in early Feb. But it has gotten worse the past 2 weeks. When I take a flight for work, I usually leave the flight with the top of head pressure sensation, even if I was fine before the flight. So there is an ear/jaw connection clearly.
And lastly, this could all be part of my musculoskeletal system resetting. Most best LLMD's say you can't get better until structural issues are addressed. When I had my flareup of pelvic stuff last summer It appeared to be partially caused by a screwed up pelvic floor due to misalignment of pelvis.
I see an amazing Osteopath who has really helped get my pelvis straight. But the donw side is then my neck needs to straighten out as well (which then causes the jaw to move and balance.) So all of this could be due to just my entire head system resetting into where it is supposed to be after 6 years of being "out."
Sigh.
Posted by Catgirl (Member # 31149) on :
quote:Originally posted by bcb1200: When I take a flight for work, I usually leave the flight with the top of head pressure sensation, even if I was fine before the flight.
I get this too.
Posted by Tincup (Member # 5829) on :
Sometimes we look deep into a topic because we've had to in order to survive. (Doctors should be doing this, not us!)
If you step back and look at the head symptoms, could it be the ongoing "mild encephalitis" that comes with Lyme? And to many of us it isn't "mild", it is worse.
And because it is worse in higher altitudes (like me in the mountains), would it be possible to try a round of something that would relieve head pressure? Maybe for 10 days or so? (Not just one pill like some take and feel they've tried it- come on now.)
Example- I use Sudafed with no extras added (12 hour kind). This sinus medication helps reduce swelling and fluids that can cause the pressure.
I have no clue of this will help you, but it might be a place to start in helping reduce symptoms even if it doesn't technically "cure" you.
A day without a headache is a wonderful thing.
Posted by Tincup (Member # 5829) on :
Also keep in mind bcb, that thru the skin is the main way we naturally detox. Sinuses are next. If you aren't sweating on a regular basis, the sinus area may be working double time.
??
Keep pushing though. You are doing a great job working this out! And yes, we all want instant cure. So much! It is hard to go slow.
Posted by Catgirl (Member # 31149) on :
Bcb, I think Dr. A's BabLo is the fry bug but he may not know it. Either way, it looks like he has patients with these symptoms. Don't get discouraged, some of my symptoms are much better (cognitive, head pressure, headaches, insomnia, etc). Also, insomnia is indicative of this bug.
Posted by me (Member # 45475) on :
My babesia symptoms are very similar to the ones you describe, but it's hard to differentiate between Lyme and cos symptoms.