posted
Well, I had hoped that all of this was behind me, but it seems not to be the case. This will be long, please bear with me.
Back in 2010-ish I received an igenex IGM positive for Lyme and also tested positive for anaplasmosis on two different tests.
Cleaned up my diet, took some herbs and a couple months of doxy and biaxin. Felt mostly better though my vision stuff never really cleared up.
Fast forward... I got pregnant with my son, who was born in late 2013. Then had my daughter in late 2015.
Our life has been very stressful since my daughter's birth, with an interstate move for my husband's job, no family nearby, aging/ill parents (mom has Lyme-induced Parkinsonism), and the exhaustion of caring for small children.
Well, in the past year, I feel like I've begun to crash/relapse -- especially since Christmas. It started with worsening lower back and hip pain flares accompanied by achy legs and and old familiar soreness in the small joints of my left hand. Also malaise and exhaustion.
Cycled through that a bit, got to feeling somewhat better (apart from being sick constantly due to my son bringing home loads of germs from preschool, and it seems like this recent flare may have been somehow set off by a nasty bout of coxsackie/hand foot and mouth that came through our house), and then this past month my eye stuff started getting worse.
For many years I have had these see-through splotches/spots all around my peripheral vision. They are permanent and they are not floaters.
My eye tests are always normal. I have had them for ten years. Now in addition I am getting frequent "sparkles," flickers, etc. mostly in my peripheral vision, and to be honest they are really freaking me out.
I saw an eye doc and a neuro. My dilated exam, visual field, and neuro exam were all normal. I am going to get an MRI for peace of mind in the next week or two.
Does it sound like this is Lyme&Co rearing its head again? Frankly I am nervous about MS and a brain tumor (the latter seems less likely given the normal exams I've had), but I realize that with my history I have to consider Lyme.
I have also been having a lot of nausea and dizziness which I used to get frequently, though honestly I'm very stressed and anxious and it's hard to tell what's caused by nerves sometimes.
Anyway I welcome any feedback... I have an appointment with my old LLMD next week. It is a bit of a drive but I figure I need to go.
I guess I'm just reaching out to those who understand this battle. It is disheartening to say the least. Thank you for listening.
[ 06-01-2017, 02:53 PM: Message edited by: lolipepper ]
Posts: 14 | From CA, PA, NY | Registered: Mar 2012
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
It sounds like you could be relapsing. I feel your pain. I've been on the merry go round for 7 years and was 95% recovered, but crashed again at end of 2015 and am now digging my way out again. Slow progress, but I am better.
Do you have an LLMD?
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
It sounds like you may be relapsing to me too. You have been under a tremendous amount of stress and that will do it!
I have some new visual changes similar to what you are describing too and since this is affecting my left eye (left side is my vulnerable area with cranial nerve damage) I wonder if this could be Lyme related as well.
These changes are beyond typical floaters with flashers in my peripheral vision like you and odd physical sensations.
My eye doc tested me and told me I have a vitreous detachment, but apparently there are some other abnormalities so hopefully retinal specialist I will see next week can enlighten me.
The other symptoms you are describing certainly sound like Lyme. I would try to see your previous LLMD or a new one to help you get stronger and fight this. The fact that you got well before means you can likely do it again.
I will try to write back about the eye stuff if I have any news after seeing the specialist. You have a lot on your plate right now with 2 small children, a recent move and caring for elderly parents.
It is good that you are investigating further with an MRI. Please keep us posted. God bless and hope things improve for you.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Sparklies are without a doubt a major Lyme recurrance symptom. That one comes back everytime I slack off with my treatment. As long as I am on high dose antibiotics, the sparklies dont happen.
Posts: 173 | From USA | Registered: Aug 2015
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I'm so sorry you are having such problems. It might be that you are relapsing.
Because Borrelia burgdorferi, the bacteria which cause Lyme disease like connective tissue and can cross the blood/brain barrier, it's very possible they are wreaking havoc with your eyes. You have certainly gone through (and are still experiencing) very stressful things, so that can also cause Lyme to flare up.
In addition to a LLMD, perhaps you should see a LL Ophthalmologist. Are you in CA now?
A good LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. He/she will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Read the books written by the top LLMD, Dr. H titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Hi everyone, thank you for the kind replies.
I do have an LLMD -- my old one. He's an hour away but I have an appointment on the 14th. I don't know if he's considered one of the best, but he seems to be fairly knowledgeable.
I would love to see a LL Ophthalmologist. I am still in Cali, in the LA area.
It is comforting to hear that other people have had so many weird vision issues. My eye exams are always normal but these symptoms are SO far from imaginary or transient.
They are very persistent and very real/noticeable. It upsets me a lot. I have had visual fields, retinas photographed with contrast, OCT scan, dilated exams, and (7 years ago) an MRI. All normal.
Is it possible that the onslaught of germs my son brings home from school could be contributing to this flare? We have all had one virus after another for months now, it's relentless.
I think the coxsackie/enterovirus/HFM may have exacerbated all of this somehow. I had HFM followed by tonsillitis (bacterial), followed a couple weeks later by another bad throat and chest infection.
It's not just me -- my whole family is catching these viruses in rapid succession, and so is everyone in my son's class from what I can tell.
I just want to be well. I also suffer from terrible anxiety and the combination of that and the very real physical issues is exhausting.
I don't get to rest much, as anyone who has kids will understand. They are 19 months and 3.5 years old, so major major high maintenance at this stage.
bcb, I'm sorry you relapsed but glad you're making headway, however slowly. It's always good to hear about people winning their battles with this stuff. I hope you continue to improve.
dbpei, please do update me on your retina appointment, I would be very interested to hear. I hope it goes well.
Christopher, do you get a combination of sparkles and more subtle flashes/flickers? That's what I've been having.
I also get strobing in my peripherals when I go from bright sunlight to a dim room. I came home from a day at the beach (very sunny) the other day, and when I went into my dim bedroom the strobing was off the charts for a few minutes.
hopingandpraying, thank you for all these links/resources! I am going to order a couple of the books now.
Posts: 14 | From CA, PA, NY | Registered: Mar 2012
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posted
Hi - sounds like Lyme flare-up symptoms to me. Re eyes, I had lots of Lyme eye symptoms. A top-notch opthalmologist did all his tests and I tested normal, even though he had to anesthetize my eyes for me to be able to look at light.
I was able to clear all Lyme eye symptoms up by drinking mangosteen juice, an anti-inflammatory juice. I drink around an ounce a day.
I like the Mango-Xan version as it's the most tart. Found in health food stores and online. We're all different when it comes to what works.
Nausea and dizziness could be caused by subluxated C1 and C2 in the neck - a good cervical chiropractor can check that out.
Sending you a private message re doctors.
[ 06-01-2017, 10:37 PM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Hi everyone, I just wanted to give a quick update.
I had an MRI of my brain with and without contrast and it was normal. I don't know the details yet -- we will go over that at my neuro appointment -- but they called just to let me know that all is okay so I can relax and enjoy going out of town with my family this weekend. Thank God!
I am assuming I still have empty sella, and if I do I am going to request a lumbar puncture because I really suspect that high ICP (probably Lyme related) is part of my problem, and part of these ongoing eye symptoms.
But at least I have had enough testing done now to know that my sight is not in danger and that my brain is in relatively good shape. Makes me feel optimistic about going forward and wading back into the war on chronic infections!
Posts: 14 | From CA, PA, NY | Registered: Mar 2012
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