Pinelady
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posted
From what I understand Mom many organisms can cause it. The testing may depend on what you gave to challenge
and how long after finishing to test
and who you tested with.
Most I have read say to test children 2 weeks after treatment of at least 3 weeks. Esp. in children.
It could be he has something else or multiple infections hiding it. Has his doctor tested or treated for known parasites?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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momintexas
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Sorry, I'm a bit frazzled at the moment. The second time he was tested for Lyme was when he had been on abx consistently for 90 days.
Before he started abx he was ELISA tested and Band 41 showed up. He was put on Amox for 90 days and then tested with a Western Blot through LabCorp.
It showed Band 41 positive both IGM and IGG.
The MRI result of Gliosis was the technical name but supposedly it means white lesions on the brain.
I think I have read about other people with lesions that also have Lyme?
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Pinelady
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I would put my trust in Igenex. But others not so sure about.
I would say let a LLMD decide by many means not just the test....
It took me 3 months of treatment to get an immune response such as a rash to come out. And has taken a year of treatment to get me about half way well.
I do believe many LLMD's can help you figure out what all you have even when the tests show little.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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TF
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Member # 14183
posted
Lyme disease causes lesions on the brain. Generally they call them white matter lesions.
I had 2. They called them UBOs (unidentified bright objects). These lesions are believed to be caused by hypoperfusion (decreased blood flow) in those areas of the brain.
LabCorp and Quest lyme tests are practically useless. So, since something showed up, I would recommend you get a lyme doctor to send his blood to Igenex for lyme and coinfection testing.
If you want to know if it is lyme or not, you have to see a doctor who has treated hundreds or thousands of lyme cases.
Regular doctors, neurologists, etc. do not know that lyme disease can cause lesions on the brain. These lesions are virtually identical to the lesions caused by MS. So, many people are misdiagnosed with MS instead of diagnosed with lyme disease.
It is unfortunate, but the only way to rule in or rule out lyme disease is to go to the doctors we recommend on this site. We know the docs who know how to diagnose lyme disease.
Treatment is another thing. Not all docs who treat lyme disease know how to cure it. To cure it, you have to go to a lyme doc who has gotten rid of this disease for a number of people. Many docs just treat people forever. Find the ones that know how to get rid of this disease for people.
That is my advice.
Here is a quote from p. 6 of Burrascano's lyme treatment guidelines regarding brain abnormalities that show up:
"SPECT scanning of the brain- Unlike MRI and CT scans, which show structure, SPECT scans show function. Therefore SPECT scans give us information unattainable through X-rays, CT scans, MRI's, or even spinal taps. In the majority of chronic Lyme Borreliosis patients, these scans are abnormal. Although not diagnostic of Lyme specifically, if the scan is abnormal, the scan can not only quantify the abnormalities, but the pattern can help to differentiate medical from psychiatric causes of these changes. Furthermore, repeat scans after a course of treatment can be used to assess treatment efficacy. Note that improvement in scans lag behind clinical improvement by many months.
If done by knowledgeable radiologists using high-resolution equipment, scanning will show characteristic abnormalities in Lyme encephalopathy- global hypoperfusion (may be homogenous or heterogeneous). What these scans demonstrate is neuronal dysfunction and/or varying degrees of cerebrolvascular insufficiency. If necessary, to assess the relative contributions of these two processes, the SPECT scan can be done before and after acetazolamide. If the post acetazolamide scan shows significant reversibility of the abnormalities, then vasoconstriction is present, and can be treated with vasodilators, which may clear some cognitive symptoms. Therapy can include acetazolamide, serotonin agonists and even Ginkgo biloba, provided it is of pharmaceutical quality. Therapeutic trials of these may be needed."
As you can see, Burrascano recommends SPECT scans of the brain rather than MRI or CT scans. SPECT will show function, which is what lyme generally affects--how well your brain functions. It does not generally affect the structure of the brain, which is what an MRI looks for. So, you may want to ask for a SPECT scan.
If the SPECT shows areas of hypoperfusion, that is a major sign of lyme disease affecting the brain.
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momintexas
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posted
Thanks TF, great information. I'm going to ask for a SPECT scan. I am taking him tomorrow to have a test through Igenex.
Here is what the MRI results say:
Several tiny white matter T2 hyperintensive FOCI which may relate to tiny areas of Gliosis.
Several tiny FOCI of T2 hyperintensive signal within bilateral frontal subcortical white matter and left periatial white matter.
Otherwise Normal.
Posts: 1408 | From Tx | Registered: Nov 2009
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TF
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OK, forget the gloisis. It says it MAY relate to gliosis. So, gliosis is just a guess as to the cause.
Your child has what I had. Read this from PubMed:
"T2-hyperintense foci are one of the most frequent findings in cerebral magnetic resonance imaging (MRI). They can pose serious diagnostic problems which is reflected by their English name and abbreviation - UBOs (Unidentified Bright Objects)."
The neurologist wrote that the reason for requesting my scan was lyme disease. The report of the scan stated that I had the 2 UBOs and then said: "Lyme disease cannot be ruled out."
As PubMed says, these findings can pose serious diagnostic problems. In other words, it is hard for them to figure out the diagnosis of a person with these hyperintense foci. Right. They DON'T KNOW what causes these. That's the bottom line.
Many, many people with lyme disease have these.
Posts: 9931 | From Maryland | Registered: Dec 2007
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momintexas
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TF, did yours get any better with treatment?
Do these ever go away?
So there is a possibility that this could be Lyme related?
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tick battler
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posted
This can definitely be a symptom of lyme. My husband (who has lyme, etc.) had a Spect scan done which showed white matter. He had a normal MRI. At the time, he was having a very hard time finding words and even felt it was hard to talk. He has improved a lot in this area and I would expect the white matter to be less. We were told it can go away with lyme treatment.
Again, as TF says, I would not put much faith in the testing. Lyme is a clinical diagnosis. Two out of three of my young children had negative lyme tests prior to treatment and my youngest daughter never got a positive Igenex test...only band 41. She has had about 6 Igenex lyme tests. However, she did test positive for babesia (two types) and bartonella henselae. So, you can't rule out lyme, even with a negative Igenex test.
Does your son have any other symptoms? I would definitely get him to an LLMD if others in your family are infected. It tends to run in families (all 5 of us have it).
tickbattler
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TF
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posted
All of my symptoms went away with good lyme treatment. I had word finding problems, name recall problems, memory problems, derealization episodes, inability to sleep, continual headaches, recurring stiff & sore neck, facial pain of all kinds, sound sensitivity, etc, etc, etc.
All of these things are from inflammation of the brain by lyme disease. That is what causes the UBOs. Once the lyme is treated and the inflammation goes away, the UBOs will also go away. And, the symptoms they are causing also go away.
But don't expect any "regular" doctors to know this. They don't. Only our lyme docs understand this. This is what Burrascano means by "Lyme encephalopathy" as in the page 6 quote above.
Does you son have some of the mental symptoms listed for lyme disease such as what I named? See Burrascano guidelines pages 9-10
If he has a number of these mental symptoms, that tells the tale I would think.
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hshbmom
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I just came across this information about brain inflammation and the role of glial cells:
Brain injury or irritation activate glial cells to release cytokines, which turn on the inflammatory process.
What is gliosis? Gliosis is a proliferation of astrocytes (large glial cells) in damaged areas of the central nervous system (CNS)...a growth in the number of large glial cells in response to damage to the central nervous system (brain).
Gliosis: A process leading to scars in the central nervous system that involves the production of a dense fibrous network of neuroglia (supporting cells) in areas of damage.
Gliosis is a prominent feature of many diseases of the central nervous system, including multiple sclerosis and stroke. After a stroke, neurons die and disappear with replacement gliosis.
Growth of glial cells in the brain are result of inflammation. What started the inflammation in the brain? Lyme disease can cause an infection in the brain.
Allergists and immunologists aren't the only medical specialists interested in inflammation these days. In the journal Neurology in 1997, neurologists presented research that people who had been regularly taking anti-inflammatory medicine like Ibuprofen had much lower rates of Alzheimer's disease.
In the New England Journal of Medicine in 2001, a study showed an 80% reduction in risk of Alzheimer's among those taking anti-inflammatory medicines daily for two years.
Linda Van Eldik, neurobiologist at Northwestern University School of Medicine, explains that whenever the brain is injured or irritated, glial cells pump out cytokines, chemical signals to begin the inflammatory process.
However, "in chronic neurodegenerative diseases like Alzheimer's, these glial cells are actived too high or too long or both," says Van Eldik.
*********
MominTx, it sounds like you have MRI evidence of a brain inflammation, possibly due to Lyme disease. The white matter lesions caused by Lyme disease are identical to those of MS.
My advice is to do whatever it takes to get your child evaluated by a LLMD and proceed from there.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
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posted
many patients with lyme symptoms have just band 41, seen it as i read here for years. There is also a medicle abstract where it says the only way to tell BB, from MS, on a mri, is antibiotic treatment wait three months and repeat the mri. It was to be IV,treatment, if i remember correctly. I was the patient in the journal article. The spots were gone 3 months after IV, treatment. They returned 8 months later, i continued oral treatment and i feel much better today. I also had numerous spots on SPECT scans, that went away with treatment, they also returned, but are normal now for 4 years.
hope this helps.
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momintexas
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Thank you all so much for taking the time to respond to my post. I can't tell you how much it helps to hear of your stories.
My son has numerous symptoms. He has facial twitching, anxiety, anxiety, anxiety, eye pain, headaches, what feels like UTI but has tested negative repeatedly. His vision has changed 6 times in 2 years. He also experiences nausea on a regular basis.
We have been checking into PANDAS as well. That has also not been ruled out just yet either.
I'm taking him today to get a test done through Igenex and am hoping we can get some more answers from that. It will be a very long 3 week wait.
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posted
Hi Mom, Hang in there. I know that this is a scary time for you. My 16 yo daugther has been doing the rounds to find out what is wrong with her. I remember when we sent her blood off to IGeneX and were going in to get the results that we all thought that they would be negative, because over the years nothing had ever come back positive.
When we got the results, no only was she positive for Lyme, but also Bartonella, Babesia and Erlichea! Imagine that? I was so relieved to have an answer, finally after all these years!!
Please while you're waiting for results read the book Cure Unknown. It gives such a good history of Lyme. The stories are the same over and over. Adults and children going to Dr after Dr only to be told that there was nothing wrong with them, or that they had all of these other illnesses. Only when they were treated for Lyme and Co did they begin to heal.
My daughter's Lyme tests came back negative from Quest. Her test from IGeneX came back CDC positive for IgM and negative for IgG. Meaning she has Lyme. We are 4 1/2 months into treatment now, and she is beginning to show improvement.
As a matter of fact, yesterday she was able to take a final test for a history class at her online high school. She didn't even need my help. The reason that I bring this up is that her anxiety has been off the charts! She never used to be an anxious person, but in the last few years she has been so anxious that she was having panic attacks. The abx are beginning to work!
Hang in there Mom, and I beleive that once you get your test results back you will have your answers, and you will begin to be able to get your son well.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
What is causeing the twitches is the bacteria in his nervous system, swelling his spine. Also the UTI, is from swelling in the trunk and groin area. Anxiety is the lyme also, understand his body is doing things unimaginable, try to get him some anxiety meds, and some pain relief, it is easier to fight lyme disease if your not in so much pain. And when the treatment starts it sometimes gets worse before it gets better.
Posts: 7 | From PA. | Registered: Jun 2010
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TF
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posted
Please get your son some meds for the anxiety. Lyme anxiety is a living hell. I had it. I hate to think about the suffering it caused me.
Anti-anxiety meds like xanax may work. If not, then they will try antidepressants. Keep trying until you find something that works and does not make him feel like a zombie. It is pure torture having that level of anxiety.
You don't need to know the cause of the anxiety to get medication for it. Please do it now.
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Carol in PA
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quote:Originally posted by momintexas: My son has numerous symptoms... facial twitching, anxiety, headaches...
These are symptoms of low magnesium. Lyme Disease causes low magnesium, as the Lyme bacteria use up the mag in our cells. The muscle and nerve cells need magnesium for all enzyme processes.
Look for a form of magnesium that ends in -ate, such as magnesium glycinate. Magnesium oxide does not absorb well, but it is cheap, and the manufacturers like to use it.
This is a simple treatment that you can do yourself. Don't bother getting a blood test for it, as that measures the magnesium in the blood, not the muscles and nerves.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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TF
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posted
Burrascano on magnesium (from page 6):
"Magnesium deficiency is very often present and quite severe. Hyperreflexia, muscle twitches, myocardial irritability, poor stamina and recurrent tight muscle spasms are clues to this deficiency. Magnesium is predominantly an intracellular ion, so blood level testing is of little value."
And, from page 28:
"Magnesium supplementation is very helpful for the tremors, twitches, cramps, muscle soreness, heart skips and weakness. It may also help in energy level and cognition. The best source is magnesium L-lactate dehydrate (``Mag-tab SR'', sold by Niche Pharmaceuticals: 1-800-677-0355, and available at Wal-Mart). DO NOT rely on ``cal-mag'', calcium plus magnesium combination tablets, as they are not well absorbed. Take at least one tablet twice daily. Higher doses increase the benefit and should be tried, but may cause diarrhea. In some cases, intramuscular or intravenous doses may be necessary."
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momintexas
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Thank you again for the additional replies!
He and I both take magnesium and it does help to an extent with the twitches. Maybe I'm not giving him enough? He's on a potassium/magnesium combo. 250 mg. We've tried a bunch of different kinds and this seems to be the one he tolerates best.
I also think school adds to his anxiety. He seems much calmer on the weekends. School is almost out and we are anxious to see if any of the anxiety comes down a bit.
We had the test done today for Igenex. Hopefully this will help shed some light on things as well.
Does anyone know if any of the Pediatric LLMD's will work with a local Dr?
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Carol in PA
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quote:Originally posted by momintexas: He's on a potassium/magnesium combo. 250 mg.
Yes, increase this gradually. This will help him tolerate stress, too.
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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TF
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posted
Sandyk just posted the doses Dr. H. has prescribed for her husband. Here is the mag dosage:
posted
Low mag. does cause twitches. BUT in serious BB nervous infection, the nerve roots being irritated cause the twitches. The only thing that slows them, is to fight the infections. I have seen 3 different good llmd's and they agree my nerve root irritation causes alot of twitches, i'm talking the lymie who has visable constant twitches. You could take a bottle of Mag. and it's not going to help what soever. Now a person being treated with lyme, low Mag, yes.Most twitches are found in the calves, being constant, and not as many in the facial area. The infection gets into the saccrum, which is why the lower extremities are more symptomatic. His symptoms of UTI, type feelings is swelling of the trunk and groin area. This is not visable but very painfull, sometimes leaving a burning pain in the lower buttocks, spine area.
Posts: 7 | From PA. | Registered: Jun 2010
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posted
I had muscle twitching in my legs bad enough that I couldn't lay on my side with my legs on top of each other. The twitches were constant and would just bounce off from each other and be very distracting.
When I got on zith for a URI, the muscle twitching decreased to almost nothing. I only noticed it if I was paying attention to it. When I was done with the zith, it increased again. Biaxin works well for it also, for me. Some of the other abx do not work as well on this particular symptom of mine.
I might also have a Mg deficiency, but I am pretty convinced an infection is behind my muscle twitching.
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