Desperate, please help with diagnosis, Cognitive Dysfunction, Igenex Results

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Knight33
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/16/2010 2:52 AM (GMT -6)   
Can someone please help me. I realize this is kinda long but I am so desperate and would be eternally grateful if some of you guys would take a couple minutes and read this and help.

I've had severe chronic symptoms consisting of complete cognitive dysfunction (memory loss, no concentration, slowed thinking etc), muscle twitching, unreal/woozy feeling, and dizziness upon standing since my onset with severe headaches in July 2009. Over a year ago.

I had recently returned from a 6 week trip all over europe. I did a lot of outdoor activities including hiking. I currently live in Texas. I have gone undiagnosed and my symptoms don't really fluctuate. After about 2 months from the onset I sought out a lyme literate doctor in Texas because I had tested positive for lyme with the elisa but negative on western blot. I also tested once negative and once equivocal before the positive elisa. But never any western blot positive. A circular rash developed about 5 weeks after symptoms started on my back that lasted about 4 weeks too, but it was after a massage so I dunno if it was from a bite or maybe some kind of reaction to the massage oil.The rash was splotchy with a lot of red pimples in it. Also, no other doctor could tell me what was going on. The LLMD tested through igenex and the results were as follows:

Igenex IGM Results:

18 kDa: -
22 kDa: -
23-25 kDa: -
28 kDa: -
30 kDa: +
31 KDa: IND
34 kDa: -
39 kDa: IND
41 kDa: +
45 kDa: -
58 kDa: +
66 kDa: _
73 kDa: -
83-93 kDa: -


So three positive bands and two IND bands. I dunno what those indeterminate bands really mean. I've heard they're weak positives but who knows.

Igenex IGG results:

All negative bands except

41 KDa: ++

so one double positive. The results were negative for igenex as well as CDC. Also, was tested for all co-infections (mycoplasma, bartonella, babesia, etc) at Igenex and they were negative.

The LLMD also did aCD8-CD57+ Lymphs tests at LabCorp in which the results were:

50 (reference range 60-360)

Based off my history and the test results my LLMD wanted to try some antibiotics because he said the CD57 test was indicative of chronic lyme. So I tried 2 1/2 months of doxy and ceftin combo. I felt no change in my symptoms so he tried Cipro for 2 weeks which didn't do anything either.


I was also seeing some infectious disease doctors at the time who said I definitely did not have lyme and tested me via Quest and all test results were negative. This was after antibiotic treatment. So since I didn't have a change in symptoms, the LLMD was expensive, and I had negative results I gave up on lyme and looked elsewhere until 2 weeks ago.

My most recent doctor who I traveled all the way to California to see thinks I still MAY have lyme based off these results. He said I probably tested negative because I picked it up in Europe and they have different strains of the bacteria they test for. So he put me on amoxicillin and zithromax, which I've been on for 2 weeks and still don't feel any change in symptoms. He said I may have to go on IV therapy because it is neurolyme and harder to get out. However, I'm really skeptical about the lyme diagnosis. I mean I tested negative a bunch of times even at Igenex,

I'm skeptical of the diagnosis because I don't really have the classic symptoms such as arthritis. Why would I go straight to experiencing neurological symptoms if it was a recent infections? My symptoms started with headaches and nausea for about 3 days then immediately progressed to mental confusion and memory loss.

My thryoid levels have since decreased from the time of onset and I have to take armour for hypothyroidism now. But I don't notice anything from that. I've also ruled out heavy metals, candida, parasites, MS, Lupus, CFS, Liver disorders, tick borne encephalitis, other testable viral encephalitises, and mainstream infections from infectious disease doctors. I've had 3 MRIs all normal. 5 EEGs. 2 were abnormal. No conclusions through.

A doctor also said I may have just had some type of viral encephalitis that can't be tested for and caused permanent damage but I doubt that is the case. I doubt this because a) I never had flu like symptoms indicative of a virus, b) a spinal tap at time of onset didn't reveal any increase in white or red blood cells, or infection...although slight increase in protein, c) I actually got better for a couple days and symptoms went away after the severe onset then came back with another headache which doesnt happen with encephalitis, and d) most people with encephalitis my age (22) get better after a couple months or at least see improvements unless they had it so severe they go unconscious.

A possibility is a may have some strange virus like a stealth virus or something but I doubt that too.

SO I please beg you people to help me. Do you think I have lyme disease? Should I try IV therapy? How could I have such a sudden onset of neurological and cognitive symptoms with lyme? If it was chronic lyme was I just asymptomatic until it triggered the cognitive stuff? Please help me.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35849
   Posted 8/16/2010 4:30 PM (GMT -6)   
Hi Knight 33!!!
Welcome to our forum!! I am really very sorry that you have had so much trouble with your health, but it does sound like some of our members stories. I'm sure you will find that we are compassionate, caring, & understanding. We really do understand what you have been through, as many of us are dealing with, or have dealt with the same situation or symptom. Also, may I heartily suggest that you read the 1st thread at the top of the forum entitled "New to Lyme?...Start here"? It has a whole bunch of info that would be beneficial to know.

Lyme Disease in Europe is a different strain that what is normally found here in the states & so it takes a different test to detect it & a different abx to treat it. Also, there are many, many different strains of tick-borne bacteria that have yet to be identified! As a general rule, Infectious Disease docs won't diagnose anyone they don't absolutely have to. They are on the 'other side' of a large battle about taking long-term abx, basically.

I believe that there is enough evidence to say that each and every person will need a treatment that is as unique as they are. We all have our own set of health issues & weaknesses in our bodies. So your not being helped by the combo's of abx that you have already been on isn't terribly surprising. If you were diagnosed with Hashimoto's Thyroiditis, there are several people here - including me- that have had that diagnosis. I take Synthroid, but there are others here who take Armour though.

Another thing - a lot of us have very high titers with Epstein-Barr Virus. I was diagnosed as Chronic/ Acute & told that I would have a life-long problem with this. This will complicate most any other issue, as fatigue & sore throats are commons symptoms of EBV.

It can take as short as 2 weeks for Lyme to go chronic. At this point it is not very likely that enough of the bacteria is left in your blood stream, as the infection has moved to your tissues. I didn't test positive until I had been on heavy abx for a full year!!! Also LD is now the "New Great Imitator" - it used to be syphilis. It mimics many, many other diseases/conditions.

If you have seen a Lyme Literate MD & that person has told you that you do have tick-borne infections even though you test negative - you have just been clinically diagnosed!! That's what the CC guidelines actually tell docs they should do!! In my opinion, I would say yes to IV abx and as soon as you can be started, the longer you wait, the more opportunity these infections have to dig a little deeper & create even more misery. You don't have to have issues with your joints in order to have Lyme or any other tick-born infections. Yes, it can go straight into Neurological Lyme.

I think you would benefit from reading this article about Neurological Lyme Disease www.psychologytoday.com/blog/emerging-diseases/200812/shadowland-the-mind-neurological-lyme-disease-part-one.

I'm sure that others will be along soon to offer their opinions.

I wish you peace along your journey to health.
Even the mightiest oak tree was once a little nut who held it's ground!!!
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 8/18/2010 11:24 AM (GMT -6)   
I'm skeptical of the diagnosis because I don't really have the classic symptoms such as arthritis. Why would I go straight to experiencing neurological symptoms if it was a recent infections? My symptoms started with headaches and nausea for about 3 days then immediately progressed to mental confusion and memory loss.
----------------------------
Lyme affects people differently. Dr. B's protocol outlines treatements as well as what may happen to different individuals. He says it can take years but it can take as little as 24 hours to enter your CNS. It would be a shame to dismiss it and get worse. I did not have all the symptoms either, but tested + on band 41--the only one that my doc ordered. he gave me abx for 3 weeks. It was not enough. I am back on abx 2 yrs later with much worse symptoms. My symptoms lasted 1 day the first time and tylenol (2 pills ) took care of it. You will not test + if your immune system does not produce the antibodies. My last result was --, but I was diagnosed with long standing Lyme based on the other tests and symptoms. I am back on abx, hopefully my new docs will know how much is enough, and not cut me out too soon, like last time, which caused my relapse.

Everyone is different... everyone's body reacts different to the disease...
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