Is this Lyme or something eles?

Hello everyone, my fiancé posted here about a month ago describing his symptoms and seeking advice on his diagnosis. He tested positive through igenex but a lot of things don’t add up. I am desperately trying to help him and find out if there is a good reason to believe that it is indeed Lyme disease that is responsible for his strange symptoms.

1) First and foremost his Visual Snow Syndrome (static in vision, after images, trails, light sensitivity etc). I’d like to know if Lyme disease can manifest itself as visual snow. This is his main concern and all the doctors he has visited (including Lyme literate) have never heard of it. So this leaves me to wonder is this from Lyme or not? I know that not everyone with this condition has LD. If he had this treated, he would feel mostly normal as he DOES NOT feel sick at all. As a 4th year optometry student, I don’t know much about Lyme, but even doctors at my school that have evaluated him say that Lyme disease usually causes eye problems such as anterior or posterior uveitis or scleritis; they never seen visual snow be caused by Lyme.

2) He has some facial numbness on the left side of his face that comes and goes every 3-4 weeks. This doesn’t seem to be too much of an issue for him anymore. This came with the visual snow so I wonder if this is just a migraine problem like most of the neurologists he’s seen think it is.

3) Now I know that igenex is considered by many to be the gold standard in Lyme testing but is it possible that false positives do occur? I’ve read a few articles online that said they had a very high false positive test rate and that even healthy people had Lyme specific bands show up on their test. I’m not trying to argue with anyone about the accuracy of igenex, rather I am looking for advice and education on the subject. His co-infections came back negative which I know isn’t determinant but a positive result would have helped persuade me that Lyme is the culprit.

4) He has been eating healthier since he started antibiotics 1.5 months ago. After a month of doxycycline he’s now on a month of azithromycin and hasn’t experienced any change in symptoms. While he’s doing his best to cut out gluten, dairy, sugar, and alcohol, when he does have them, he experiences no issues with them at all. Most people I’ve read about have major problems with these. Does it affect everyone differently?

5) As I’ve mentioned before, aside from his visual disturbances that he experiences 24/7 and the anxiety it has caused him, he feels fine. He has no pain or fatigue or cognitive issues.

I’m sorry for the long post, but we’re both deeply concerned and frustrated because we don’t know if we are on the right path and even the doctors have never seen these set of symptoms so it’s hard to go off of symptoms to make a diagnosis. The doctor he’s seeing now wants to put him on a 28 day treatment of IV rocephin. I’m worried about all the antibiotics he’s taking and it’s affect on him, especially if he doesn’t have Lyme to begin with. Thanks for your time.

I just find it hard to believe his symptoms to Lyme; but IgenX is positive. Some doctors believe he has Lyme with bartanella based on his facial numbness symptoms or just migraines presenting as visual snow. We are just unsure if where to go from here.

“First and foremost his Visual Snow Syndrome (static in vision, after images, trails, light sensitivity etc). I’d like to know if Lyme disease can manifest itself as visual snow. This is his main concern and all the doctors he has visited (including Lyme literate) have never heard of it. So this leaves me to wonder is this from Lyme or not? I know that not everyone with this condition has LD. If he had this treated, he would feel mostly normal as he DOES NOT feel sick at all. As a 4th year optometry student, I don’t know much about Lyme, but even doctors at my school that have evaluated him say that Lyme disease usually causes eye problems such as anterior or posterior uveitis or scleritis; they never seen visual snow be caused by Lyme.”

Light sensitivity is a not an uncommon symptom - we have members who have it.
I’m surprised a LLMD hasn’t seen that symptom before.

Also the vision problems have been reported by members here as well.

“2) He has some facial numbness on the left side of his face that comes and goes every 3-4 weeks. This doesn’t seem to be too much of an issue for him anymore. This came with the visual snow so I wonder if this is just a migraine problem like most of the neurologists he’s seen think it is.”

Bell’s palsy is a common symptom - presenting as facial numbness, sometimes pain, and muscle weakness.

“3) Now I know that igenex is considered by many to be the gold standard in Lyme testing but is it possible that false positives do occur? I’ve read a few articles online that said they had a very high false positive test rate and that even healthy people had Lyme specific bands show up on their test. I’m not trying to argue with anyone about the accuracy of igenex, rather I am looking for advice and education on the subject. His co-infections came back negative which I know isn’t determinant but a positive result would have helped persuade me that Lyme is the culprit. ”

The Lyme WB is known to have false negatives not false positives - Igenex lab is one of the better labs to test at.
People sometimes test positive and don’t appear to have symptoms - because their immune system is keeping it in check.

“4) He has been eating healthier since he started antibiotics 1.5 months ago. After a month of doxycycline he’s now on a month of azithromycin and hasn’t experienced any change in symptoms. While he’s doing his best to cut out gluten, dairy, sugar, and alcohol, when he does have them, he experiences no issues with them at all. Most people I’ve read about have major problems with these. Does it affect everyone differently?”

Yes it does. I don’t feel any different on GF, SF, diet.

What was the dosage of doxy?


So my question is - What prompted him to do a Lyme test if he only has eye issues and cheek numbness?

Thank you all for the replies. Several people have mentioned that their symptoms of visual snow had gotten better after being diagnosed and treated for Lyme via IV antibiotics; but they also had more of the typical symptoms associated with Lyme.

He was on 100mg twice daily for a month and is curently on Azithromycin 250 once a day. I’m a few weeks he’ll be starting IV Ceftriaxone.

Bell’s palsy was ruled out. He had no drooping or facial asymmetry at all. All the emergency room doctors, ophthalmologists, and neurologists contributed this numbness to migraines as they can present themselves as stoke like symptoms without actual pain.

The positive IgenX bands were 31, 39, 41 for IGM. And 23 & 39 indeterminant with 41 positive IGG.

I've had numbness in parts of my face and other places. Isn't confined to one area. I had no drooping either.

My very first symptom was excruciating pain from my left shoulder blade, up the left side of my neck to the base of my skull, and my left arm was limp and numb. This followed several days of left shoulder blade tingling.

Within a few months, I had lost 14 lbs, had alternating bouts of anxiety and depression, bad sleep, sensation of lump in my throat, with difficulty swallowing, left cheek numbness and pain, muscle twitching, urinary urgency, undigested food in my p--p, muscle weakness. joint pain.

But, the symptoms didn't stop there...I also experienced waking up a few times a night in a panic, gasping for air, frozen shoulder, swollen and sore clavicle lymph node, baker cysts, sore feet, sore ribs, tremors, sensation of warm water running down my legs, shivering, sweating, memory issues, tailbone pain (excruciating),

I'll stop there. I'd have to check my list for the rest.

Take a look at these links:



/www.tapatalk.com/groups/thosewithvisualsnow/late-stage-or-chronic-lyme-disease-visual-snow-pal-t7916.html

/www.healingwell.com/community/default.aspx?f=30&m=3684440

I want to add that I do understand why you are questioning a Lyme diagnosis - when someone has milder symptoms and/or just a couple - it’s not an easy decision to make.

It’s just that time and time again we see people here who are untreated for years and then continue to worsen as they are just given medications to deal with the symptoms - sometimes misdiagnosed as having ms or als... or another autoimmune disease when it has been Lyme and coinfections all along.

CatEye said...
Thanks Girlie! Do new symptoms occur rapidly or slowly? He hasn’t experienced any new symptoms since this all began 5 months ago. Only experiencing the persistent visual snow and occasional facial numbness.

It varies from person to person.

mine were very quick...every few days to a week I was getting new ones.

But, some people maintain a level of managing a few symptoms...

My husband has tested positive (he announced one day - after I was diagnosed "Remember that bullseye rash I had several years ago?") and he has manageable symptoms. He was diagnosed with hypothyroid several years ago (after the bullseye that I don't recall) and has a few other issues he deals with. Has never really felt well with the meds for his thyroid condition. ...better, but not really good.
He's a guy who thinks everyone has aches and pains and now he says he's just getting old.

I want him to treat - but he's waiting for me to be well...two treating in one household with no one working - isn't going to go well.
It's his decision when to treat...but he ain't getting any younger...so.

Are there perhaps symptoms that your husband has and has pawned off to old injuries...or getting older?

Without debilitating symptoms, it really isn't an easy decision.

For me..it was. I felt very healthy, no issues prior to lyme...and then it hit me like a ton of bricks.
Easy decision to treat.

"Is this Lyme or something else?"

Why do u put the OR between lyme and something else ?

OK OK i know i should not joke about this, but i cannot help myself.

"
- Doctor: I have bad news. It's lyme and cancer!
- Patient: Thank God it's not cancer !
"

We are all allowed to have more than one serious illness my friend. I know statistically that is less likely, but one chronic disease may raise the chances u get the 2nd chronic disease (by a really hi margin)....so ...

anyway that was a bad joke

We pursed the testing of Lyme because there have been several cases where people experience visual snow because of it. No doctor we saw attributed this visual disturbance to Lyme and was a path we perused on our own. In many cases the cause of visual snow is unknown and typically diagnosed as a migraine related issue because doctors are not aware of this condition. Even myself as an intern in an optometry program I have NEVER been formally educated on it. That is why I questioned the Lyme diagnosis.

As a primary care provider in training, I KNOW that a person can have many different conditions that must be ruled out from one another; but can occur together. The OR is because I wasn't convinced he had Lyme to begin with because the major symptom is a neuro visual issue. But Lyme does cause the neurological issues such as the facial numbness he experiences from time to time.

Most importantly though, as of today, we got a call from our public health office indicating he had a positive Babesia test. Although we called the doctor several days ago and they stated all co infection testing was negative. :/

He has an appointment tomorrow so I guess we'll find out why we have this discrepancy and were to go from here. So I guess this was the confirmation we were looking.

We are in the Chicago suburbs. Last August we were up in Northern Wisconsin for only 3 days, and went to a forest preserve in our area about a year ago. Other than that he works in a pharmaceutical warehouse. So with our schedules we don't really spend too much time at all outdoors let alone in wooded areas. As a teenager more than ten years ago (he's 26 now) he would camp once or twice a year in rural Illinois.

As I mentioned previously in this thread:

The positive IgeneX bands were: 31+, 39++, 41++ for IgM. 23 ind, 39 ind, 41++ IgG.

And now today he has a positive Babesia?

If his infections are similar to mine, it's not surprising Doxycycline and Zithromax arent doing anything. They didn't do anything for me at all either.

I hope you can find a treatment that helps him.