I'm back, not sure if anyone here now remembers me. I was posting for a few months toward the end of my lyme treatment.
I had a series of major life events such as moving and drastically increasing my workload (20+ hrs of overtime) so I just kind of lost touch.
About two months after stopping abx I had another tick on my leg, got it off within a few hours.
Within a couple of months I started to have some serious visual problems:
Visual Snow, Floaters, Benign Fasciculation Syndrome, Blue Field Entoptic Phenomenon, Palinopsia
Of course no eye doc or nuero eye doc could say what was wrong.
Had another surgery, this time they used the corisone injection and I feel worse than I did the first time around.
I tested negative for lyme on the western blot and all, but my doc said that it's probably due to the cortisone shot.
Have low cd8/cd57 and low igg subclasses 2 and 4 with low immunogloben.
I was just curious if anyone else had similar vision problems or issues with the low igg levels. I've been searching and have found forums with those with the visual disturbances but not much about the igg levels.
So far I'm on 100mg Minocycline 2x day to see if I" herx and go from there.
Sorry again for my absence, this time around I will stay in touch! (even if only every so often)
Thank you all for reading and I hope that you are doing well with your journey to beat this affliction. I do have extensive experience with lyme, so if any new members have any questions feel free to pm me.
Posts: 80 | From US | Registered: Aug 2011
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posted
I've only been bitten once and once is enough. One of my first symptoms was problem with my
vision and increased floaters. Once I got on minocycline, my vision stabilized, and since I am
getting old, I need my "cheaters" glasses more and more, but this is a function of age. I didn't
have IgG when I was tested 3 years ago and have not been interested in repeating a generally
flawed test. I did test CDC positive then, so why repeat? Anyway, eyes can reflect the condition of
the body. Give the minocycline time to work and see if your vision stabilizes or improves. Vision
problems can also be caused by co-infections, too. Have you considered this possibility?
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
Thank you for the replies. It's good to see you still on here, lymetoo.
I'm being tested for all coinfections and a few other things. The second test my LLMD ordered had nearly every box checked on the lab form.
I see a lot of people with mold, yeast, and fungus also have the vision issues. Vision was not one of my symptoms the first time around and my vision was perfect prior to this.
I did the VCS test for neurotoxins too, that was negative.
I'm hoping you're right, that within some time it will improve on the Minocycline. I'm just impatiently waiting for it to happen haha.
Thanks again for the responses. = )
Posts: 80 | From US | Registered: Aug 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You may need to supplement TAURINE for the eyes, especially if you don't get enough from eggs, fish, meat. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
I am sorry you were bitten again.
Have you had other immune function testing done? If you have low IgG levels, I recommend that you see an immunologist for further testing. You may qualify for IVIG (Intravenous immunoglobulin).
If Mino is a good med for your case you may herx, but if it is not you may not react. Hopefully your doctor knows this.
Posts: 4682 | Registered: Oct 2000
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posted
you need to be on 300 mg of mino! This dosage really hits the CNS. this dosage helped my eyesight and hearing!
Posts: 532 | From Texas | Registered: Oct 2004
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posted
I'm really, really hoping I don't need the IVIG. I think if I do I'm just not going to tell my wife and I won't get it. There is way too much going on already.
As far as the supplements, I will check them out. I guess I have the MTHFR A1298C mutation as well, so I need to be careful what supplements I take.
I think I had a herx starting the day after I started and lasting five more days, but I'll keep an eye out to see if it happens again.
My son had the flu at that time also so I'm not sure if I had some of that or if it was a true herx.
She just started me on the 100mg twice a day for now until we figure out what all is wrong with me. Last time she had me on doxy, biaxin, and metronidazol.
Thank you all for the input!
Posts: 80 | From US | Registered: Aug 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
If you are immune deficient, you don't have enough immunoglobulins to fight infections properly. So getting IVIG if needed can help you fight infections better.
If I remember correctly, Mino is a bit stronger than Doxy and 200 mg is typically prescribed. I have an aggressive-treating doctor and when I took Mino it was 200 mg daily.
posted
Is the IVIG something that would be forever, or will the igg normalize in time?
I just don't understand how I go from being a young person in perfect health and shape to now needing IVIG, I don't fit the criteria of someone who is immune deficient (such as the chronic infections and such).
Until lyme I had no health issues, especially nothing like this. I know when I had my bloodwork done I had a 102 fever and very swollen lymphs. I had a pretty serious flu, I also got my allergy shot a week before that. I'm hoping that it was just a circumstantial abnormal test.
Posts: 80 | From US | Registered: Aug 2011
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
It could be a fluke that your testing was off.
When a person is evaluated for IVIG, extensive and I mean extensive testing is done. You have to meet certain criteria for it to be covered, because it is very expensive. So you cannot go by just one test.
Posts: 4682 | Registered: Oct 2000
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