I know I haven't posted much lately. It's not because I'm better by any means. Just frustrated and at a loss how to proceed/what to do anymore.
I have really had problems the last few weeks, but some of the issues have been for the last two months. I feel like I'm battling an unbeatable sinus issue. My ears feel plugged constantly. I have no fever, but my eyes/nose just won't stop draining liquid. My balance is terrible. I had a few episodes were my ears heard a high pitched ringing sound that I don't think was really there.
I continue to have terrible head pressure, brain fog and fatigue. My legs have been super heavy and getting tingling in my legs. My eyesight is very blurry and I can't focus well on things no matter if I use my regular distance or close reading glasses.
I had a terrible episode late last week where my right arm/hand felt very heavy/weak out of nowhere when on the computer. Then out of nowhere, my pulse jumped up to 120-130 (usually 70-80) and my BP was 205/97. I just didn't feel well at all and called an ambulance. They took me to the ER.
The ER did a CT scan of my head/sinuses. It was normal except for minor mucus thickening in the sinuses. Blood work was perfect as well along with the EKG. I was fearing stroke type issues. A little part of me fears a TIA, because I read it's not detectable on CT-scans/lab work. The ER doc didn't mention that possibility, but the presentation of the symptoms was odd for me. They put me on a daily dose of baby aspirin which I'm continuing to take.
I had a cardiac cath in late May this year which was totally normal. I have been on short courses of Biaxin for the sinus issues and most recently Augmentin when the issue happened. Now, the ER doc put me on a 7-day course of Omnicef. He's not sure if it's an infection or not. No fever, no odd blood work, etc.
I'm two days into the Omnicef and still having weird episodes. My left side of my face felt odd today. Not numb, but a weird sensation. Getting all kinds of odd burning/tingling feeling in my spine. I also had an episode today where I was very short of breath.
Honestly, I'm pretty scared of all the symptoms. It seems like things got worse the last month.
An alternative, integrative doctor I consulted with wants me to start Ivermectin and one other anti-parasitic. I have had no formal Fry testing to confirm FL1953, but she thinks I have it along with Lyme/Babesia. My WA-1 IgG titer from LabCorp a few months ago was 1:1,024.
I just don't know if this stuff is auto-immune of infection or all in my head anymore. I feel like it's playing tricks with my mind. I was so intelligent before so this demoralizes me so much. Posted by seibertneurolyme (Member # 6416) on :
Seek,
It really sounds like babesia or some other blood borne parasite is at least partly to blame for your symptoms. Babesia can cause hypercoagulation and what you are describing definitely sounds like at least in part a lack of adequate blood flow to the brain.
The cheapest and easiest thing you can do to improve blood flow to the brain should also help with cardiac issues. I would start taking high dose niacin -- you will have to work up to whatever dose you need. There should be some old threads about this.
It has to be the kind that makes you flush -- some people have more problems with taking it than others. Hubby had to take at least 300 mg to even cause him to flush. But he found it very helpful. He continued that protocol for at least 4 to 6 months -- it gradually became less beneficial over time.
And wobenzyme is cheaper than lumbrokinase and might be better to start with if you have not done systemic enzymes before.
Bea Seibert
Posted by TF (Member # 14183) on :
Just know that that flushing can be unbearable for some people. My husband took niacin (doesn't have lyme) and yelled that it felt like his face was on fire.
He could not tolerate it.
Posted by LymeSwimmer (Member # 40540) on :
Hi Seek - sorry to hear about all of this.
Quoting: "I have really had problems the last few weeks, but some of the issues have been for the last two months. I feel like I'm battling an unbeatable sinus issue. My ears feel plugged constantly. I have no fever, but my eyes/nose just won't stop draining liquid. My balance is terrible. I had a few episodes were my ears heard a high pitched ringing sound that I don't think was really there."
I have had the similar to the above - horrible sinus issues for well over a year - hadbalance issues, headaches, ringing, etc. as you describe.
I went onto an elimination diet a month or so ago - and have stayed off of wheat and dairy (as well as other grains, legumes, corn) - I feel better - and the sinus issues have gone away , whcih was really surprising - so for me it is something to do with one of those food groups.
Have you considered looking at food as playing a role in this?- maybe try a week or so with an elimination diet (basically rice, lamb and pears) and see how you feel?
Just thinking out of the box
Prayers and thoughts for you.
Posted by GretaM (Member # 40917) on :
I can't tolerate flush niacin either.
The initial flush makes my face chest and back flush for nearly an hour.
It is uncomfortable.
But the worst part is afterwards-something to do with vaso dilation/constriction.
My face and lips went blue, my fingers and toes went blue, I got extremely cold and faint, and my heart beat slows to 40.
Just be careful if you try the flushing niacin.
Posted by TF (Member # 14183) on :
This is going back many, many years, but I believe my husband's doctor who recommended the niacin said that only about 1/3 of all people can tolerate the flush it causes.
The flush lasts a good while and recurrs. It took at least a week after stopping the niacin for my husband to be rid of the horrendous face-on-fire problem.
But, his doctor said that for those who can tolerate it, the niacin works very well.
Posted by seekhelp (Member # 15067) on :
Thanks Bea and others. I will consider the Niacin. I'm on the Omnicef right now and feeling very ill. I'm very concerned as I keep getting burning sensations throughout my body. My feet feel like they are tingling at times and I break out in terrible chills. My muscles tightened up quite a bit too today - moreso than normal.
I called my PCP and told him about the burning feeling. He did not feel this is an allergic reaction and said finish the medication. There also could be a chance I have been attacked by some nasty virus. I just feel way worse than normal, but am not running a fever, see no rash/markings on my body, etc.
The chills I get aren't normal ones. It feels very neurological like it goes right down my spine.
By the way, I was tested by a conventional allergist 4-5 years ago for Penicillin / Cephalosporin allergies and they were not found. Not sure if that applies forever, but....
If this burning continues, I'm scared. Posted by seekhelp (Member # 15067) on :
I think I'm going to take a Zyrtec tonight too. The baby aspirin is also a new medication I started 2-3 days ago. Wonder if that plays any part in this?
Posted by mlg (Member # 35383) on :
I agree with your integrative doctor. I think it is proto fl1953 and/or babesia.
I also had a lot of your symptoms constant sinus infection, discharge from eyes, weird feeling on side of face, spine, head pressure, etc.
Anti-malarials help.
Also, ivermectin, albenza (sometimes with a base of zithromax and colonics to help detox).
Biofilm disruptors: Heparin lumbrokinase, etc.
wheatgrass juice oregano oil capsules
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by LymeSwimmer:
I went onto an elimination diet a month or so ago - and have stayed off of wheat and dairy (as well as other grains, legumes, corn) - I feel better - and the sinus issues have gone away , whcih was really surprising - so for me it is something to do with one of those food groups.
Have you considered looking at food as playing a role in this?- maybe try a week or so with an elimination diet (basically rice, lamb and pears) and see how you feel?
Just thinking out of the box
- Have you tried this, seek??
PS .. maybe the burning is from yeast that is being stirred up by the abx??
Posted by seekhelp (Member # 15067) on :
Lymetoo, I have been gluten/dairy-free since 2008..no help IMO, but I still do it.
I have not cut out other foods though. I am strongly considering trying a full elimination of hot peppers/capsaicin. I am noticing every time I am around hot pepper fumes, I'm dry heaving/gagging now. That may be my body's way of saying enough is enough? I have read a few interesting blogs about people who have experienced serious intolerance to capsaicin.
mlg, I think I'm going to try the FL1953 treatment at this point. Gotta do something!!
Posted by Lymetoo (Member # 743) on :
Worth a try! Do you eat other grains?
If you are eating a lot of GF breads, cookies, etc you can still have issues with it being a processed food.
![[Frown]](frown.gif)
They took me to the ER. ![[group hug]](graemlins/grouphug.gif)