Still doubtful. Playing detective

Hello all. In my first post I shared that I was perplexed by my Igenix test results. I wrote that I've been in the city my whole life where I've never hiked or been in forestry. A few of you explained that a tick bite could have come from fleas, ticks on birds, or could have been sexually transmitted.

I hate to come off negative, but I don't think I've been in any situation where I would have been exposed to Lyme through those means. I am a homebody; always have been.I was in Michigan in 2012 where I was in shrubbery next to a woodsy area but it was adjacent to the barn of the house, so It seems unlikely, especially since relatives are fine and healthy.

The only thing that would make sense is that I was exposed through sexual contact. I'm not proud of what I'm about to write but I was careless in my early 20's and contracted syphilis(this would explain band 41 right?) and now wonder if this is where I was exposed.

Other than the two being spirochetes, is there a link between syphilis and lyme?

Also, I will retest to confirm my doubts.

Quick update: The doctor who interpreted my test also thought is was peculiar that I had a lyme specific band with symptoms that came from one moment to the next. He said that lyme doesn't doesn't hit you like in the dramatic fashion that I described. Soo, its his suspicion that I experienced an adult onset of PANDAS. He totally blew my mind. As of yet, I have not received a treatment protocol as further testing was needed and could not afford it. He contacted my regular doctor and tried his very best to get her to order the required test to confirm his diagnosis. She didn't want to play ball and was kicked to the curb.

He wrote this to her:
Dear Dr. XXXX:
I believe (little moe) may have adult onset PANS-PANDAS (Pediatric Acute Onset Neuropsychiatric Syndrome/Pediatric Neuropsychiatric Disorders Associate with Streptococcal Infections) and needs a full workup as noted below.
Freddy literally awakened on 1/2/15 with the acute onset of sudden severe, psychiatric, emotional and physical symptoms consisting of decreased mental clarity, fatigue, anxiety/panic attacks, muscle twitching, electrical sensations in the head, arm and leg, loss of stamina, dysequilibrium, paresthesias in his hands, sensation of fevers, flu, swollen glands and occasional dyspnea.
He has been unable to continue his college studies. He had obtained two internship offers upon graduation, which he has been unable to begin as a result of these symptoms.
Just prior to the onset of these symptoms, he states he was “at the peak of my life,” before experiencing this profound metamorphosis.
He has tested positive for two bands on Western Blot Lyme testing, 41 and 83-93 (the latter band is very specific for Lyme Disease), multiple hormonal abnormalities and has elevated liver function tests with negative hepatitis screen. He has been evaluated by Endocrinology, Internal Medicine and Psychiatry. Symptoms have been attributed to vertigo and depression which only slightly cover his extensive symptoms and laboratory findings.
We need to complete a comprehensive evaluation to assess other possible infections, environmental metabolic/mycotoxin poisoning/auto immune disorder, brain injury/CVS and Endocrinopathy.
My practice specializes in Tick-borne Diseases and co-infections, environmental and mycotoxin poisoning, hormone balancing therapies and nutritional and psycho-emotional support.
Please consider evaluations by Neurology, Endocrinology and Infectious Disease through his Medi-Cal coverage, which I believe are necessary for this unfortunate patient.
I have attached 2 summaries for your review from the PANS/PANDA Network which include testing considerations.
I am more than happy to discuss this further with you at your convenience.

Sincerely,
XXXXXX, MD"


Original test results
Genomic - B Burgdorferi NEGATIVE
Plasmid - B Burgdorferi NEGATIVE

IGENEX - IGG - RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
41 kda +


IGENEX - IGM - RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
31 kDa IND
41 kDa +
58 kDa +
66 kDa +
83-93 kDa +

Lyme is clinical diganosis, so test are not very reliable.

I don't know what PANDAS is. Could someone write something more about it?

If you do have PANDAS - that doesn't mean you don't have lyme. Isn't PANDAS a diagnosis based on symptoms only?

lyme is known to produce PANDAS symptoms in children...

Not only did you have a + on lyme specific 83-93, but also an IND on band 31....which is almost always from borelia. (Rarely from a virus...eg ebv according to Dr. Horowitz)

Is it a LLMD who you are seeing that suspects PANDAS?

If I were you, I would treat for lyme...you have been exposed to the bacteria (test shows this)...and your symptoms also are congruent with that.

Also, the mercury could just be adding to it all. 17 amalgams is crazy! Yikes. I have not heard of the company you tested with, I did testing through Doctor's Data. Can you tell me more about the test - was it provoked, urine, blood, hair?

No matter what, you probably want to address those fillings at some point. Very slowly with a good biological dentist who knows how to remove them properly. Make sure your doctor is well versed in heavy metal chelation and do your homework. Low and slow is always the best with toxic metals.

Lyme disease really takes a toll on your immune system. But there are people who test positive that are not sick. I think it's a combination of things, and for you it could be the PANDAS and mercury toxicity draining your immune system. Mercury is very toxic and can cause symptoms very close to Lyme Disease.

Hi girlie. Thank you for your input. The doctor I saw doesn't have the official tittle of LLMD. He does however, treat lyme and specializes in tick borne infections. He seemed more focused on the idea that my symptoms are attributed to something else. He doesn't subscribe that my symptoms, as I experienced them, very suddenly, are indicative of lyme. It really threw me off. That's not to say, that he discounted the positive bands. He sat there puzzled, saying, "Interesting". Also, he didn't acknowledge the "IND" 31. As you explained, I thought he was going to say something like, "This means something showed, but not strong enough so this is still significant." He just said had it been positive, I would have a legit Igenix positive for lyme. Soo, IDK. I've considered going to another LLDM for a second opinion but at the moment, I'm too broke for anything.

Has there been a suggestion on how to treat your PANDAS?

Metal in the jaw can lower immune system. 17 mercury fillings-yikes
I did see one small study where the metal in jaw cut the immune system down about half or
said another way when metal we removed the persons immune system doubled
on average-which we help you nomatter what you have.
That could be the real issue

Little Moe- I definitely have lyme unfortunately I can treat all day long and never get better as I lack the gene to remove the lyme toxins and also lack the gene to remove mold bio toxins. I have been through 2 LLMDs that pumped me full of all kinds of prescriptions and neither tested for the genetic defect. My new Doctor has me on a path that makes obvious sense, it's going to be a long road but at least it's not the wrong road like I was on before. You are be fighting more than just Lyme and I hate to say it but there would be better suspects considering your symptoms than PANDAS, it's very rare in adults. The genes I'm missing are also missing in 25% of the population.

Have you had a VCS test? Have you had an HLA DR test? If so what were the results? And if you haven't had these tests I would question your doctor as to why not? And would be very interested in the answer.

Canr you just get another pcp and have them run a strep antibody test? Insurance should cover it and that could confirm pandas.

Navigator said...

k07 said...


Navigator - i too have the lyme hla gene. If I had to guess, most of us on here prob do! Luckily no mold gene for me though.

I won't disagree that most of us have it. The frustrating part is everyone is talking about how to detox and they don't understand that no matter how much they try anything they do does not actually work. You can soak in a tub, cover yourself in essential oils, sit in a sauna, sit in a freezer but it won't help, those toxins are just circulating around like children at disney world with a free pass.

That's not the point of detoxing. At least not the way I understand it.
I understand that for instance drinking lemon water or Braggs acv with mother in it, help bring our bodies back into a healthier ph after bacteria die off, etc., brings it into too much acidity.

Binders help remove everything, including ammonia, through the digestive tract.
Dry skin brushing helps increase blood flow to the skin, removing toxins from that area. Etc., etc....... I don't expect it to cure me from these bacteria, etc.,, just help my body not be overwhelmed by them or their die off.

Have you had a VCS test? Have you had an HLA DR test? If so what were the results? And if you haven't had these tests I would question your doctor as to why not? And would be very interested in the answer.

My apologies for not responding to some of you sooner. I was in the ER a few days ago and been really struggling with my symptoms. Thank all of you who acknowledge my questions and for taking the time to be engaged with my concerns in this forum. It really does mean the world to me. Thank you all so so much.

Hi navigator. The doctor who interpreted my lab results did in fact want to test for the things you mentioned in your post. Ever since my regular doctor refused to test those and other test, I lost momentum and have not seen any doctors since then. I will soon though. I will keep you all updated.

jennydancingfish said...
Canr you just get another pcp and have them run a strep antibody test? Insurance should cover it and that could confirm pandas.

Hi jenny. Truer words have never been spoken :) Yes, this is possible. It was a tedious and frustrating process just to get this type of insurance when this all began and I've learned that EVERYTHING is when dealing with the county for this kind of assistance. For this reason, I've avoided dealing with the insurance company because I just...well, I just don't have it in me to start all over with them. Its a massive, time consuming headache. However, I will revisit hell Lol and give them a call tomorrow. I already know the doctor to switch to who will be cooperative. I hope I don't come off as lazy or apathetic towards my health, but it's been a LONG road and I'm running of out gas. I need the occasional push start to get going.