posted
Can someone please help me. 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:
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 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.
Posts: 121 | From Houston, TX | Registered: Aug 2009
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
The rash, all by itself is diagnostic of Lyme. Many never see a rash.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
The only problem is that the rash doesn't sound like a Lyme rash. Usually pimples and splotchy are not words used to describe it. But I would do your own research, because I am by no means an expert.
The rash can take many forms, so I'd encourage you to look at some of the pictures on the Lyme Disease Association's website. It doesn't have to be a bullseye (can just be a solid circle...or not even a "circle"), but I have never heard of pimples like that....and depending on what you mean by splotchy...doesn't sound like the EM.
Other than that....I would just see how the antibiotics work out. If the IND on 39 comes back as positive after some treatment and retesting...that would make Lyme more likely.
You could look into getting the band 31 confirmation test. Not sure if Igenex will run that when there's an IND or not.
You can also try some Lyme herbals like Andographis, etc and see how that works. See Buhner's book "Healing Lyme."
If you get a herx, that would indicate some kind of infection.....at this point, I'm not even sure if I still have Lyme (am not herxing from Lyme drugs but probably still have bart and babesia), but I'm pretty positive I still have some kind of infection. So just determining if you think it's infectious or not is a big step. Using various antibiotics and/or herbals can help you try to figure that out.
You could also be dealing with mycoplasma, chronic strep, bartonella, etc etc. So at the end of the day, answers are hard to come by.
Good luck!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
ps---based on symptoms alone...sounds like a bartonella-type thing.
I know you have tried Cipro and Doxy.....but I would look into Rifampin with something (like zithromax or minocycline), or Bactrim DS. Bactrim helped my cognition/brain fog a lot. And it doesn't treat Lyme, so if it helps, you would know it's some other kind of infection....either independent of Lyme or in addition to Lyme.
Posts: 4590 | From Midwest | Registered: Jun 2008
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quote:Originally posted by Knight33: Can someone please help me. 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:
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 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.
Breaking this up for easier reading for many here.
Your symptoms sound like Lyme symptoms to me. Lyme presents differently in everyone, and it partly has to do with the fact that there are 100+ different strains in this country and 300 strains worldwide. As you mentioned, you may have gotten it abroad.
Here in this country, we mostly have the Borrelia burgdorferi genospecies. In Europe, there's Borrelia afzelii and garinii. The garinii one can present with neurological symptoms.
The EM rash presents differently too - not too clear here from your description whether that presentation sounds like it. Maybe others here will know more about interpreting what you are describing.
You have a positive ELISA - pretty strong indication of positive.
And you have three positive IgM bands; all are Lyme bands.
Plus two ind's. I think ind's are a weak positive.
And a positive 41 band on the IgG, the antibody for the flagella, the tail of the bacteria.
I've been told by IGeneX that they can test for strains from all over the world, including Europe.
At the top of Medical Questions, there's a thread called Quick Links to Popular Topics. You can click on that and then on the third post down, the Western Blot Explanation. Scroll down it a little and you can read about the meaning for each antibody band.
My opinion is that you have Lyme and need to be in consultation with a very good and experienced LLMD for treatment approach. It is not uncommon for those with neurolyme to have IV treatment for it.
Keep discussing it here with everyone. It's good that you came here to do so.
Posts: 13116 | From San Francisco | Registered: May 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Oh, I somehow didn't see the part about the positive Elisa. In my mind, that makes Lyme much more likely. I am not a doctor though. Western Blots can be fickle.
I am doubting if the rash was from Lyme, based on how you described it, but it doesn't affect whether or not you have Lyme, since a good percentage show no rash.
Good luck!!!!
Posts: 4590 | From Midwest | Registered: Jun 2008
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BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725
posted
You don't have the classic arthritis, as you said, but not everyone has EVERY symptom.
I have no fatigue yet I have a very positive test.
So you never know..everyone is different.
-------------------- First Symptom 9/09 Multiple docs, negative Labcorp test LLMD: 1/10 Positive Igenex/CDC test Treatment 2/10 2/10-8/10 Amox, ceftin, zith, flagyl Currently: Bicillin, Minocycline, still dealing with severe breathing issues
Posts: 1121 | From New York, New York | Registered: Dec 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
There is a pic on this website of a lyme rash that I might describe as pimply and splotchy...
Also, a poster here on lymenet, Brussels, has had experience with all kinds of bacteria, etc that she and her daughter were infected with in Europe. You could search her previous posts or pm her. Nice lady.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
You can take the positive ELISA to the bank. It is more often negative than positive. So if it's positive, you can bank on it.
IND's are weak positives.. but YES, it's important!! There are many reasons for it to show up less than a strong positive.
You need to stick with Lyme specialists. No more infectious disease drs who deny Lyme every chance they get. It's all very political and you are in the middle of it.
Print this out and read it over several times. It will confirm what we are telling you about the testing.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Lyme can present with neurological symptoms immediately. The arthritis symptom is common but NOT pervasive - if I recall correctly, 30-50% have arthritis symptoms at some point in their Lyme progression.
If you were infected in Europe, there is an even greater chance of a more neurological Lyme presentation, as that is thought to be an even more prevalent presentation in Europe.
My gut instinct (just based on many years of reading medical and scientific literature and research, and thousands of anecdotes from Lyme patients) is that you have a European strain of Lyme, and that you likely picked up one or more concomitant infections (co-infections) in Europe. In many cases, co-infections can potentiate each other (Babesiosis can cause Lyme to worsen or become harder to treat, etc.).
I would recommend finding a very well-versed LLMD that is more read up on European tick-borne infections, and that will diagnose clinically and treat more than just the Lyme.
In your case it is possible that you need to start treating one or more co-infections before you can make headway with treating the Lyme.
You might also need to go straight to IV for the neuro-Lyme. Many antibiotics do not effectively cross the blood-brain-barrier and the rest of the CNS.
IV Rocephin is many times helpful for patients who have neurological complaints that do not improve with oral antibiotics. Just be careful of your gall bladder and look into Actigall with your doctor.
I would start browsing Google Scholar for research and case studies regarding European tick-borne and mosquito-borne (and other insect vectors) diseases, and put together a list of what might fit your symptom history profile.
One thing that springs to mind is Tick-Borne Encephalitis (a virus), which is relatively common in Europe.
To try to answer your other questions:
YES, there CAN be raised bumps (pimple-like and otherwise) in an EM/Lyme rash, absolutely. Some doctors and researchers say that this may be caused by co-infections. I'm not saying that your rash was from the Lyme though, as it could have been contact dermatitis from the massage if you used any massage oils etc.
Regarding your Western Blot - any Lyme specific bands coupled with your symptoms and history, and your positive ELISA are a clear sign of the presence of Lyme (in my non medical opinion).
"83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.
93: The DNA or genetic material of Borrelia burgdorferi."
Also:
"30: Possibly a variant of outer surface protein A"
"58: Heat shock protein."
Speaking as a non-medical professional, you have Lyme disease, and my opinion is that you have one or more European Lyme strains, along with one or more other European co-infections, including, possibly, TBE (Tick-Borne Encephalitis).
You don't have to have a flu-like illness at onset of TBE. Symptoms can be exactly as you have described your own symptoms.
It also has different phases, which could help explain the relapsing/remitting for a few days.
"Patients with neuroinvasive disease may present with neck stiffness and headache typical of aseptic meningitis, mental status changes indicating encephalitis, focal neurologic deficits,
movement disorders, such as tremor or Parkinsonism, seizures, or acute flaccid paralysis with or without meningitis or encephalitis.
Isolated limb paralysis can occur without fever or apparent viral prodrome."
posted
Hey guys. Thanks you so much much for your replies. I can't tell you how much they mean to me. All the articles are really interesting that you all posted and I will continue to look through them.
Some of you have talked about possibly getting tested for European strains. Does anyone know where I can get this done? Are the Fry lab and Central Florida Labs testing for european strains?
I don't believe Igenex tests for them. Or do you guys think I should retest Igenex. I've been on antibiotics for about 2 weeks now.
Also, some of you suggested seeing an LLMD who knows how to treat European Lyme. Does anyone have any suggestions about where I can find an LLMD who specializes in Neuro Lyme, treats with IV, and knows about European strains. I know that's a lot to ask for. I live in Texas but would be willing to travel.
I think an important question is, do they use different antibiotics for lyme in europe to treat their strains? Does anyone know?
I heard their are a high amount of false positives with the ELISA test, almost as many as false negatives. That's why I'm skeptical. I believe someone said this is a sure thing but I even know someone who tested positive for Elisa and they didn't have lyme.
Are European co-infections the same as US (i.e. bartonella, babesia, mycoplasma, etc)?
Also, tick borne encephalitis was one of the first things I thought I had so I sent blood to the CDC and they tested me for Powassan encephalitis which is TBE in the USA but almost always cross reacts with TBE in Europe and it was negative.
Nenet - thanks for the help on vector borne illnesses. I already tested negative for west nile though. Thanks and let me know if you find anything else suspicious.
Someone asked about my symptoms they are: Complete cognitive dysfunction (i.e. memory loss, no concentration, slowed thinking ability, etc) muscle twitching all over my body but mostly in my calves, a weird drunk/unreal/woozy feeling, dizziness upon standing (hypotension), thyroid dysfunction and at the time time of onset I had headaches for about a month including migraines. Headaches have completely subsides though.
Does anyone think my cd57 count of 50 (ref. range 60-360) is an indicator of lyme? However I also heard this is only low in chronic lyme patients and I had this test done 2 months after symptoms started. But what do you guys think?
Posts: 121 | From Houston, TX | Registered: Aug 2009
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posted
I am from the UK and believe I got Lyme either here or in Italy. I tested positive with Igenex and am now being treated by a US LLMD. She also treats quite a few other european patients.I don't think she uses different antibiotics to do this, but treatment is very tailored to the individual so it all depends on how you respond.
Posts: 174 | From UK | Registered: Oct 2009
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