A dear friend of mine has been having some health issues, so I suggested that she get tested by Igenex.
She has gone once a year on vacation to upstate NY for many years, so it is possible she could have had some exposure but never remembers a tick bite or bulls eye rash.
Recently she woke up with dilated pupils with no resolution yet.
Here is the symptom list she provided me with. She has looked at a very complete Lyme symptom list:
Dilated pupils 3-4 weeks
Eye exam and brain MRI were negative.
Just weaned off Celexa to rule in or out if this may be the cause. It's not fully out of my system yet even thou I have stopped taking it.
Raynaud's symptoms - Recent. Fingers cold and occasionally blanched white. Sometimes tingling. No pain. Recent autoimmune tests negative.
Feet often cold. Have had this issue for years and before beginning menopause.
Itching - Almost a year. Very intermittent and not accompanied by rash.
Had a rash a year ago. Not a bulls- eye rash. Doc thought it was seborrhea.
Sleep disturbance for many years. Some nights can't fall asleep until very early in the a.m., some nights wakes up at 3:00am other nights can sleep fine.
Night sweats - I'm in menopause, however. Sweats not present before entering menopause.
Body temperature runs low thou thyroid tests are normal.
Long history of gingivitis.
HSV 2 positive since 1984 asymptomatic
Have no significant pains at all.
No cognitive symptoms.
No visual disturbances.
Energy level OK and I function normally.
No debilitation. No behavioral changes.
My IGeneX results are:
IGM 39: IND 41: ++ All other bands negative (18,23-25,28,30,31,34,45,58,66,83-93)
IGG 41: + All other band negative (18,23-25,28,30,31,34,39,45,58,66,83-93)
PCR by Igenex: Negative
I would so appreciate any thoughts you may have about the testing results and thoughts about how to proceed.
Much thanks to you all. ABXNOMORE
I edited this post and added a few things for clarification and it is indicted in bold.
[ 04-10-2011, 02:01 PM: Message edited by: Abxnomore ]
Posted by bcb1200 (Member # 25745) on :
Hmmm...not looking very good. 41 is not specific for lyme. But 39 is. So...maybe, but it is a weak sign of potential exposure.
Posted by METALLlC BLUE (Member # 6628) on :
There isn't a clear diagnosis here. With a 41kdp, further evaluation should be performed in respect to borrelia infection, but that's only one among many in the differential. Viral testing and other infectious diseases should be ruled out. Since HSV is present, determine which strain HSV-1 or 2, -- find out if other viral infections typical of Lyme are present, including HHV6, etc. A regular infectious disease physician can perform a basic work-up in these areas.
All in all, there isn't anything here to work with without a full physical, and psychological work-up.
A mydriatic pupil(s) can be a sign of disease, trauma or other issues. Cranial nerve 3 controls pupil function. Stroke, or other types or nerve damage or interference within the nervous system could impair it. It would be the parasympathetic aspect of the system which is impaired however. Medications can also cause this, especially antidepressant medications which increase levels of Serotonin. Many other medications may also cause this.
Given the cold hands and feel, another symptom which can be attributed to menopause.
Hormone levels should be observed to see if any imbalance exists.
If after an exhaustive exploration of "non-invasive" testing, an antibiotic trial with Tetracycline at 1,500mg for 1 month may be of value clinically.
I would get basic blood testing from the PCP, see a specialist Gynecologist for hormone related issues, and Infectious Disease specialist to pursue further investigation into bacterial, viral or other pathogenic causes.
Without significant symptoms inhibiting her function, it seems inappropriate to take risks with treatments unless objective signs indicate a necessary treatment.
Posted by LSG Scott (Member # 21624) on :
bcb1200 JTLYK the tests are a guide at best, and a clinical diagnosis is needed here and a lot of times by a knowledgeable Lyme Doctor maybe a course of abx and test the response would be best here, but again that is a call for a LLMD to make
even the PCR test is a false Negative about 45% of the time
Posted by Lymetoo (Member # 743) on :
If she's really not feeling well, Lyme could be the culprit, but from what is posted here .. she sounds like she's doing OK???
The IND on band 39 could be pretty significant though.
Has she seen the list of Lyme symptoms? Maybe she has more symptoms she's not aware of??
I would also consider the possibility of yeast .. esp in regard to the itching.
Posted by 5vforest (Member # 29365) on :
Those test results don't indicate Lyme.
And with those symptoms... I would say no. Sorry.
Posted by annier1071 (Member # 28977) on :
Abx
I have the same issue with my pupils. It is what first made the ER doc do a brain MRI.
He said that a person coming off of anti- depressants or or any type of narcotic drug shows this symptom for a very long time. Even after they are completely off the med. It is the most common symptom for withdrawal.
I had a positive MRI with lesions and was not taking any anti-depressants so it was ruled out for me and the lyme diagnosis came in.
I know I am not one of the experts here, but your friends symptoms hit home for me. I also had my eyes checked and were normal, but still sluggish dilation at this time. Might just be the Celexa depending on how long she took it.
Posted by METALLlC BLUE (Member # 6628) on :
After reading the updated information the probability of Lyme Disease did increase but her symptoms are still substantially vague.
Once the Celexa is out of her system the mydriatric pupils could subside, but only time will tell.
I would follow up on what I previously said and see what further information can be gathered. Running a local Western Blot (if she has insurance) would be good with an ID doctor to see if anything at all shows up there.
Posted by Abxnomore (Member # 18936) on :
Annier, Thanks for your input. She developed the dialated pupils while on Celexa and she had been on it for a quite a while without any issues. She just woke up one morning with dialated pupils.
They did a brain MRI and it was normal.
It was suggested that she stop the Celexa to see if that was causing it. She has now stopped it and it probably has not fully cleared from her system but so far there is no change in her eyes.
Her eye movement was also determined to be sluggish by her doctor.
I'd love to hear the experiences of others if you feel you have experienced anything like this or have any perspective on this situation.
Thank you to those who have shared your input thus far.
Posted by Abxnomore (Member # 18936) on :
Hi Mike,
Thanks for your input and suggestions. She has stopped the Celexa, as I mentioned in the above post, but it is probably not fully cleared from her system yet. The hope is that her eyes will soon return to normal.
Her doctor had also run a western blot thru Quest at the same time she did the Igenex test and it was negative.
The question is if her pupils don't return to normal what to do. We all know lyme works in strange ways and she has spent a lot of time over the years in tick endemic upstate NY.
Your suggestions are well taken.
Posted by METALLlC BLUE (Member # 6628) on :
It's really hard to know. Did the Quest Western Blot show 41?
Posted by Abxnomore (Member # 18936) on :
Hi Mike,
I'm not sure. I emailed her and will post her reply when I get it.
Thanks.
Posted by LLM (Member # 31144) on :
Any value in checking immune complexes, such as C3a and C4a? Wouldn't confirm lyme per se but if high immune complexes, she'd know that not everything can be blamed on menopause. More of a way to rule an infection in - but a negative result wouldn't rule it out.
But it would save her from trying to convince her doctor to order tests from labs he/she's not familiar with. Complexes can be run by just about any lab and might be better covered by insurance.
Posted by janice victorov (Member # 22937) on :
Morning, with a band 39 being indicative is what I have and enough for my llmd to treat me.
Posted by Abxnomore (Member # 18936) on :
Hi Lymetoo,
Yes she has carefully reviewed a Lyme symptom list. I provided her with a very detailed one.
Thank you to every one for your thoughts.
Please post if anyone has additions ideas/opinions, especially about dilated pupils.
Posted by Abxnomore (Member # 18936) on :
Mike,
I heard from her and the Quest WB was negative on all bands, including 41.
That still leaves the mystery of the dilated pupils.
Posted by METALLlC BLUE (Member # 6628) on :
I take it she's been to an opthamologist?
Posted by Abxnomore (Member # 18936) on :
Yes she has and they did not find anything wrong with the health of her eyes thou the day before her integrative MD noticed that her eye movement was sluggish and it was less so when she saw the eye doctor thou her pupils where still dilated.
I have another question/thought. The Celexa is just about out of her system and she is hoping that her dilated pupils will return to normal.
However, if they don't return to normal and given that she has spent a lot of time in a tick endemic area for many years and given that her lyme testing does not reveal much but we all know that most times it does not with lyme being a clinical dx., what do you think her next step should be.
Also, band 39 is a significant one, even thou hers is IND it means weak not absent.
Do you think seeing a LL neuro would be the place to start? There are two good ones she can get to. The dilated pupils seem like a neurological issue to me and I would hope an LL neuro would know what to look for even if it turns out not to be Lyme related.
Or do you think she would be better off seeing an LLMD?
Of course, she would like to minimize the out lay of money on unnecessary steps.
Anyone have any thoughts one this?
Any and all ideas are greatly appreciated.
Posted by METALLlC BLUE (Member # 6628) on :
quote:Originally posted by Abxnomore: Yes she has and they did not find anything wrong with the health of her eyes thou the day before her integrative MD noticed that her eye movement was sluggish and it was less so when she saw the eye doctor thou her pupils where still dilated.
I have another question/thought. The Celexa is just about out of her system and she is hoping that her dilated pupils will return to normal.
However, if they don't return to normal and given that she has spent a lot of time in a tick endemic area for many years and given that her lyme testing does not reveal much but we all know that most times it does not with lyme being a clinical dx., what do you think her next step should be.
Also, band 39 is a significant one, even thou hers is IND it means weak not absent.
Do you think seeing a LL neuro would be the place to start? There are two good ones she can get to. The dilated pupils seem like a neurological issue to me and I would hope an LL neuro would know what to look for even if it turns out not to be Lyme related.
Or do you think she would be better off seeing an LLMD?
Of course, she would like to minimize the out lay of money on unnecessary steps.
Anyone have any thoughts one this?
Any and all ideas are greatly appreciated.
If she is determined to pursue the Lyme Disease diagnosis or investigation, then seeing a Lyme Literate Neurologist won't be anymore useful. The reason why is that we already know which nerves are affected. We also know that the nervous system is "always" affected in Chronic Lyme Disease. We also know it's currently a sub-clinical issue and isn't showing up beyond the "effects". A Brain SPECT scan may show some changes, but I doubt it.
A trial antibiotic routine for 30 days would be sufficient.
Further investigation with blood testing and hormone testing would be wise, including ovarian hormone output. It's also important to be aware that Herpes infections can -- in rare cases - cause cranial nerve abnormalities, including Bell's Palsy. That particular virus she has is "very" much a neurological infectious disease. It hides in the nervous system, especially sensory nerve fibers. It has been known to access Cranial Nerve III. A prescription of Valtrex could potential resolve the pupil dilation issues if it is the cause.
That virus could very well be the cause of all her symptoms. It's important to investigate this as well as other infectious diseases.
If she chooses to see an LLMD, she should ask that this type of testing be run. Borrelia Burgdorferi can also cause every single symptom she's reporting. I'm thinking the case is more complicated than just borrelia though, if borrelia is involved.
With an IND of 39 and 41, but with minimal symptoms, it seems strange. The sickest patients (chronic) tend to have the least positive results, but what we have here is the reverse. A generally healthy person with minimal symptoms.
Still, again, no doubt that Lyme Disease should be apart of the differential.
Posted by annier1071 (Member # 28977) on :
abx,
If she can get in to see an neuro lyme it would be great. That is the reason they are sending me to get another opinion is due to the fact that my eyes still won't dilate.
She needs to be sure to protect her eyes. I get totally blind even looking out the window on a cloudy day. It is very freaky. They suggested, as you know, MS to me too since it is one of the main symptoms of the disease or Lupus.
MY llmd said he does not treat these two diseases, just lyme, so I have to try and get them ruled out by a lyme neuro quickly to be sure.
Posted by Abxnomore (Member # 18936) on :
Thank you both Mike and Ann. Your input and insight is greatly appreciated.
Posted by Abxnomore (Member # 18936) on :
My dear friend has asked me to thank all of you who have taken the time to share your ideas and experiences. She is very grateful for your help.
And I thank you, too.
Posted by Abxnomore (Member # 18936) on :
My friend has decided to see an LLMD.
Can anyone PM me with their experience with NYC LLMD's. I know who they are but would love to hear some first hand information from patients who see them.
Also, your experience with Dr. H. or any NY LLMD that you think is really good.
I would so appreciate it.
Posted by Abxnomore (Member # 18936) on :
Anyone???
Posted by BackinStOlaf (Member # 23725) on :
PMing you
Posted by Abxnomore (Member # 18936) on :
Thank you!
I hope to hear from others who see NYC LLMD's and also patients of Dr. H.
Much thanks.
Posted by Abxnomore (Member # 18936) on :
I'm sending this up one more time. I've gotten so many great responses from you.
If any one else can fill me in on the NYC LLMD's with personal experience or Dr. H. please PM me.
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