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Lyme-like illness


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#1 Dr_Rosario_Trifiletti

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Posted 04 March 2010 - 04:13 PM

I found this information on a "Lyme Doctor's" website

http://www.drcharles...com/testing.htm

He states:

For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to “screen” for borreliosis, even though it is a “confirmatory” test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.

Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the bacteria, there was a 97 percent chance they would feel better with antibiotics. Consequently, I tell my patients not to worry if the laboratory interpretation is “negative” or “equivocal,” if they have antibodies that are significantly associated with Borrelia burgdorferi.


As you know, many PANDAS patients, with "normal" Lyme titers are showing p41 IgG and IgM on Western blot. Could this have something to do with antibiotic-responsive strep-negative illnesses?

Dr. T


#2 lyme_mom

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Posted 04 March 2010 - 05:00 PM

I found this information on a "Lyme Doctor's" website

http://www.drcharles...com/testing.htm

He states:

For this reason I believe the screening tests are practically worthless, and is why I use the Western blot to “screen” for borreliosis, even though it is a “confirmatory” test. Antibodies are very specific as to what they bind; consequently, in over 700 borreliosis patients false positive blot results occurred in only three percent of them, based upon research I presented at the 2000 International Lyme Borreliosis conference.

Data from those same 700 patients showed that if their Western blots had even one antibody significantly associated with the bacteria, there was a 97 percent chance they would feel better with antibiotics. Consequently, I tell my patients not to worry if the laboratory interpretation is “negative” or “equivocal,” if they have antibodies that are significantly associated with Borrelia burgdorferi.


As you know, many PANDAS patients, with "normal" Lyme titers are showing p41 IgG and IgM on Western blot. Could this have something to do with antibiotic-responsive strep-negative illnesses?

Dr. T



Dr. T.,
I am so glad to hear you say this!! Dr. Crist was trained by a famous lyme specialist, Dr. Masters, who discovered a version of lyme carried by the Southern Stari tick. His research is very interesting. It would not surprise any lyme doctor though because they know that the testing is really unreliable for a number of reasons. I really think a lot of these kids with PANDAS symptoms could have lyme, Babesia or Bartonella but they are not showing up on the tests for one reason or another. Ilads-trained Lyme specialists do not rely soley on the antibody testing because they are notoriously unreliable unless you use a lab like Igenex. Lyme specialists do not even bother with the ELISA test b/c it is wrong 40% of the time. Igenex tests for two strains of lyme (there are 200 known strains of lyme) and all known antibodies for lyme (including 31 and 34, the ones they were going to base the lyme vaccine on). In addition, a very sick person, such as possibly a child with PANDAS symptoms, may not always produce antibodies because their immune systems are not functioning properly. Lyme doctors have found that in many cases someone who is suspected to have lyme will turn positive after antibiotic treatment because the immune system can finally mount a response. In addition, the other problem with the regular lyme tests is that the regular labs do not test for antibody bands 31 and 34 so a patient who is positive for band 41 who has not had an Igenex test could have two other positive bands that are lyme-specific and not know it. I think you should call Dr. Charles Ray Jones in New Haven and talk to him about your observations with band 41. He would be delighted to talk to you and he freely shares his knowledge with other doctors. (203-772-1123) He around 80 years old and has been treating lyme since it first exploded in Lyme, CN forty years ago. He has treated over 15,000 children with lyme from all over the world including my kids. He has also spoken at the Lyme-Autism conferences. I am also pasting a link to a paper you may want to read regarding the diagnosis and treatment of lyme which was written by Dr. Joseph Burrascano, a well respected lyme expert:
http://www.ilads.org...es_12_17_08.pdf This is considered a bible for lyme doctors.

You could be the first PANDAS doctor to join ilads! This would make a lot of sense. Keep digging.. you're on to something here.
Lyme Mom

#3 sf_mom

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Posted 04 March 2010 - 05:51 PM

Dr. T,

I've had many conversations with Dr. K regarding our case history and the direct connection of RF to Kawasaki's and the 'cluster' of children that are now PANDAS. There is a study out of Japan claiming to have found the exotoxin of the S. pyogenes in 100% of patients in the acute phase of Kawasaki but as you know... no positive cultures, no raised titers are typical but yet it share 93 common symptoms to RF. Perhaps same pathogen involved?

http://www.springerlink.com/content/l34qj830548q4q46/

My father-in-law also a Dr. summarized his thoughts regarding the lack of humoral response in young children to the S. Pyogenes after reading the additional article below.

In PANDAS when exposed to strep pyogenes early in life the humoral (antibody) portion of the immune response does not occur in affected children. The strep pyogenes antigens are not bound by the antibodies when infection occurs because PANDAS patients cannot produce the antibody. Since this initial immunity to strep pyogenes infection is absent, the strep enters the PANDAS host and proliferates.

This results in a 2nd immune response to components (polysaccharides) of the bacteria's cell walls producing an antibody (AB'). This second antibody cross reacts (also attacks) with nerve cell surfaces (brain) causing signaling activity (TICS, Chorea).

Treating with IGG binds with and lowers the levels of (AB') and in conjunction with antibiotics eventually cures the child.

Effect of SpeB and EndoS from Streptococcus Pyogenes on Human Immunoglobulins http://www.ncbi.nlm.nih.gov/pmc/articles/PMC100124/

This doesn't resolve the Lyme debate but it might explain the lack of raised ASO, Anti-DNAse-B and positive cultures in some children.


-Wendy

#4 pacificmama

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Posted 04 March 2010 - 09:26 PM

I’m glad to see that Dr. T continues to explore how lyme may factor in to some of these cases. I’m not sure I would call it “lyme-like”, as much as I’d just call it lyme. As another poster mentioned, there are about 300 strains of the borrelia bacteria – so it’s quite a diverse pathogen that produces a wide variety of symptoms.

Clearly, our kids have immune dysfunction and may very well be loaded down with an assortment of things. I do not think it is a stretch to think that some of them may have lyme and strep? Or just lyme? Honestly, I see many descriptions here that just scream lyme disease. Some of you even mention pulling ticks off of your kids… and yet there seems to be resistance to even considering lyme. Why? For those of you especially with kids with joint pain (knees especially), this is a classic lyme symptom.

For those of you who live in endemic areas, this should absolutely be your first consideration! New England is thick, thick, thick with infected ticks. The whole upper/mid east coast is endemic. The upper Midwest. Northern California is very endemic, along with the pacific northwest. But it is found in every state. Go to the lyme boards… see how many people there are posting from Iowa, Florida, Texas… Google your state’s name plus lyme and see what comes up. This is the most common insect-transmitted disease with nearly 200,000 new cases each year – so it’s not exactly an impossibility. I’ll say it again: LAB TESTS ARE NOT ABLE TO RELIABLY DIAGNOSE.

As Dr. T has said, the most important thing with any of these cases on the PANDAS board is that they are antibiotic responsive – that’s what they have in common.

Finally, there is one very good reason why you should consider lyme, even if you’ve had a “negative” test: There are many doctors out there who actually know how to treat this, and which antibiotics to use, and how long to use them for. Many of you are getting results with abx, but then hit a stall, or your doc is unsure what to do, or they refuse to continue abx. But what if you would just consider that it may not just be strep, but something more, and got to a doctor who was well versed in the proper abx combos to beat this thing down. Lyme is an uphill battle, certainly, but it is a well-documented disease with a reasonable amount of practitioners with years of experience knowing what works. If it is even a possibility, you should pursue it BECAUSE YOU WILL GET TREATMENT FOR YOUR CHILD.

In my daughter’s case, she was on long term abx – mostly a combination of omnicef and zithromax. Occassionally we’d change them up, but this is predominately what worked. Later, her doctor added in Tindamax 2 days a week (called pulsing), and this really put her up and over the top to symptom free. (we did other things with supps, etc. as well). I mention this to say that a doctor who knows the abx combos makes all the difference in the world! I’m certain our daughter would be institutionalized today without her doctor.

For those who are curious, maybe you could get your doc to order up tests to be sent to one of the better labs, like Igenex, that test for all the lyme bands with much better accuracy. Maybe Dr. T will write you’re a script to have these tests run?

I know the pain of trying to heal your child, and I sincerely send you all my heartfelt best wishes.
Mary

I will post lyme symptom list below.

#5 pacificmama

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Posted 04 March 2010 - 09:30 PM

Lyme and Children:
50% have no tick attachment history, 10% or less have an erythema migrans (bullseye rash) history, but all have a history of living in or having visited a Lyme endemic area and have a decline in the way they play and perform in school. They are tired, wilt easily, have dark circles under their eyes and are sick. Lyme disease has a profound negative impact on a child’s life, cognitive function and ability to perform maximally in school. Severe fatigue unrelieved by rest results in decreased stamina and a decreased ability to play and to do school work. Insomnia, headaches, nausea, abdominal pain, impaired concentration, poor short-term memory, an inability to sustain attention, confusion, uncharacteristic behavior outbursts and mood swings, fevers/chills, joint pain, dizziness, noise and light sensitivity, and difficulty thinking, expressing thoughts, reading, writing, and making decisions as well as a feeling of being overwhelmed by schoolwork plague a child with Lyme disease. Pain and impaired cognitive function make it difficult to sustain attention and to learn and recall new material.

LYME SYMPTOMS -
Lyme is multi-systemic disease. You may have only a small subset of these symptoms, or you may have a larger variety. It is a highly individualized disease. ONLY A SMALL PERCENTAGE OF THE PEOPLE HAVE THE INITIAL RASH AT THE SITE OF THE BITE.

Early Symptoms
Often starts with flu-like feelings of headache, stiff neck, fever, muscle aches, and fatigue. If a rash appears, it may appear within a day of the bite or as late as a month later. This rash may start as a small, reddish bump about one-half inch in diameter. It may be slightly raised or flat. It soon expands outward, often leaving a clearing (normal flesh color) in the center. It can enlarge to the size of a thumb-print or cover a persons back.

Later/Disseminated Symptoms
Some people do not notice these early indicators of infection. Early manifestations usually disappear, and disseminated (other organ system involvement) infection may occur.
GENERAL
Profound fatigue, severe headache, fever(s), severe muscle aches/pain.
BRAIN
Nerve conduction defects (weakness/paralysis of limbs, loss of reflexes, tingling sensations of the extremities - peripheral neuropathy), severe headaches, stiff neck, meningitis, cranial nerve involvement (e.g. change in smell/taste; difficulty chewing, swallowing, or speaking; hoarseness or vocal cord problems; facial paralysis - Bell's palsy; dizziness/fainting; drooping shoulders; inability to turn head; light or sound sensitivity; change in hearing; deviation of eyeball [wandering or lazy eye], drooping eyelid), stroke, abnormal brain waves or seizures, sleep disorders, cognitive changes (memory problems, difficulty in word finding, confusion, decreased concentration, problems with numbers) and, behavioral changes (depression, personality changes).
Other psychiatric manifestations that have been reported in the scientific literature include: panic attacks; disorientation; hallucinations; obsessive compulsive disorder; extreme agitation; impulsive violence, manic, or obsessive behavior; paranoia; schiziphrenic-like states, dementia, and eating disorders. Several patients have committed suicide.
EYES
Vision changes, including blindness, retinal damage, optic atrophy, red eye, conjunctivitis, "spots" before eyes, inflammation of various parts of the eye, pain, double vision.
SKIN
Rash not at the bite site (EM) - This skin discoloration varies in size and shape; usually has rings of varying shades, but can be uniformly discolored; may be hot to the touch or itch; ranges in color from reddish to purple to bruised-looking; and can be necrotic (crusty/oozy). The rash may develop a bull's-eye rash or target look. The shape my be circular, oval, triangular, or a long-thin ragged line.
Other disseminated skin problems include:
lymphocytoma, which is a benign nodule or tumor, and
acrodermatitis chronica atrophicans (ACA) which is discoloration/degeneration usually of the hands or feet.
HEART and BLOOD VESSELS
Irregular beats, heart block, myocarditis, chest pain, vasculitis.
JOINTS
Pain - intermittent or chronic, usually not symmetrical; sometimes swelling; TMJ-like pain in jaw.
LIVER
Mild liver function abnormalities.
LUNGS
Difficulty breathing, pneumonia.
MUSCLE
Pain, inflammation, cramps, loss of tone.
STOMACH and INTESTINES
Nausea, vomiting, diarrhea, loss of appetite, anorexia.
SPLEEN
Tenderness, enlargement.

#6 pacificmama

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Posted 04 March 2010 - 09:32 PM

Couldn't figure out how to edit my post....

Meant to add that symptoms wax and wane... and may change in that some are dropped, some are added.

#7 earnestfamily7

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Posted 04 March 2010 - 09:50 PM

Pacific Mama - WOW!!!! and thank you for the list of symptoms ~ after reading through it I am considering the test for myself too... Also a few other questions.., my DD7 tested high on the Lyme Ab IGG/IGM and positive on the IGG band P41.... test Western Blot testing refered to the Cleveland Clinic Lab.... per Dr. T we are going to repeat the tes tin approx 1 month ... am I reading the information correctly - that we should request a specific lab to run the results - like Igenx.... if so how do you have recommendations on how to make sure the correct lab runs the test?

#8 sf_mom

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Posted 04 March 2010 - 09:56 PM

I'm curious, do you know if the bite is 'typically' obvious? I know in my girlfriend's case it was even 10 years after incident.

#9 lyme_mom

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Posted 04 March 2010 - 10:19 PM

Pacific Mama - WOW!!!! and thank you for the list of symptoms ~ after reading through it I am considering the test for myself too... Also a few other questions.., my DD7 tested high on the Lyme Ab IGG/IGM and positive on the IGG band P41.... test Western Blot testing refered to the Cleveland Clinic Lab.... per Dr. T we are going to repeat the tes tin approx 1 month ... am I reading the information correctly - that we should request a specific lab to run the results - like Igenx.... if so how do you have recommendations on how to make sure the correct lab runs the test?


If your daughter tested high then there is something there. The test you did does not test for band 31 and band 34 so your child could be positive right now if only she had the Igenex test. Dr. Jones, the world expert on treatment of lyme in children, considers even one lyme specific band justification to treat if a child he/she has lyme symptoms. 41 is not lyme specific but it is lyme suspicious, coupled with the high score on the screening test, it looks possible that she would be positive on a better test and AGAIN THE TEST DOESN'T MATTER IF YOU HAVE LYME SYMPTOMS. Its a clinical diagnosis and you need a lyme literate doctor to make that call. Lyme doctors would prescribe antibiotics immediately and would run the Igenex test. If this is lyme you do not want to give it a month to do any more damage. My son was misdiagnosed repeatedly by my former pediatrician and we are still paying the price almost two years later. Anybody in your family with these symptoms should be tested by Igenex. Feel free to pm me with any questions.
lyme mom

#10 lyme_mom

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Posted 04 March 2010 - 10:29 PM

I’m glad to see that Dr. T continues to explore how lyme may factor in to some of these cases. I’m not sure I would call it “lyme-like”, as much as I’d just call it lyme. As another poster mentioned, there are about 300 strains of the borrelia bacteria – so it’s quite a diverse pathogen that produces a wide variety of symptoms.

Clearly, our kids have immune dysfunction and may very well be loaded down with an assortment of things. I do not think it is a stretch to think that some of them may have lyme and strep? Or just lyme? Honestly, I see many descriptions here that just scream lyme disease. Some of you even mention pulling ticks off of your kids… and yet there seems to be resistance to even considering lyme. Why? For those of you especially with kids with joint pain (knees especially), this is a classic lyme symptom.

For those of you who live in endemic areas, this should absolutely be your first consideration! New England is thick, thick, thick with infected ticks. The whole upper/mid east coast is endemic. The upper Midwest. Northern California is very endemic, along with the pacific northwest. But it is found in every state. Go to the lyme boards… see how many people there are posting from Iowa, Florida, Texas… Google your state’s name plus lyme and see what comes up. This is the most common insect-transmitted disease with nearly 200,000 new cases each year – so it’s not exactly an impossibility. I’ll say it again: LAB TESTS ARE NOT ABLE TO RELIABLY DIAGNOSE.

As Dr. T has said, the most important thing with any of these cases on the PANDAS board is that they are antibiotic responsive – that’s what they have in common.

Finally, there is one very good reason why you should consider lyme, even if you’ve had a “negative” test: There are many doctors out there who actually know how to treat this, and which antibiotics to use, and how long to use them for. Many of you are getting results with abx, but then hit a stall, or your doc is unsure what to do, or they refuse to continue abx. But what if you would just consider that it may not just be strep, but something more, and got to a doctor who was well versed in the proper abx combos to beat this thing down. Lyme is an uphill battle, certainly, but it is a well-documented disease with a reasonable amount of practitioners with years of experience knowing what works. If it is even a possibility, you should pursue it BECAUSE YOU WILL GET TREATMENT FOR YOUR CHILD.

In my daughter’s case, she was on long term abx – mostly a combination of omnicef and zithromax. Occassionally we’d change them up, but this is predominately what worked. Later, her doctor added in Tindamax 2 days a week (called pulsing), and this really put her up and over the top to symptom free. (we did other things with supps, etc. as well). I mention this to say that a doctor who knows the abx combos makes all the difference in the world! I’m certain our daughter would be institutionalized today without her doctor.

For those who are curious, maybe you could get your doc to order up tests to be sent to one of the better labs, like Igenex, that test for all the lyme bands with much better accuracy. Maybe Dr. T will write you’re a script to have these tests run?

I know the pain of trying to heal your child, and I sincerely send you all my heartfelt best wishes.
Mary

I will post lyme symptom list below.


I agree. I was happy to see that Dr. T was quoting a lyme expert and clearly interested in pursuing these connections, however it is a mistake to call this "lyme-like". There are lyme experts all over the country who understand this and who know how to treat this with the right combination of antibiotics and/or anti-microbials. Its not some new phenomenon that needs to be studied. The info is out there.

#11 wornoutmom

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Posted 04 March 2010 - 10:36 PM

So I was just told that in my lovely state of Michigan, all lyme titer tests are sent to the state lab, and they will not perform the Western Blot unless the titers are positive. State law. No getting around it.

#12 pacificmama

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Posted 04 March 2010 - 10:52 PM

So I was just told that in my lovely state of Michigan, all lyme titer tests are sent to the state lab, and they will not perform the Western Blot unless the titers are positive. State law. No getting around it.


No, No... this is absoultely not true! Not sure who is telling you this.

All you need to do is have a doctor write up orders for testing at Igenex lab (for example). Either your doctor will send you the blood draw kit/instructions from Igenex, or Igenex will send you the kit at your doctors request. You will then take the kit/instructions, plus your doctor's orders, to any blood lab, hospital, what have you. They will draw the blood per the orders and instructions, and send the blood vials to Igenex in the packaging provided with the kit. You may have to pay a small blood draw fee, or they may bill your insurance, depending on your situation.

Of course you have the right to have lab work done anywhere in the world that you want! I mean, if you are using state-funded care or something, then yes, I suppose they could dictate what you do. But otherwise, no, of course this is easily done.

You could google Michigan Lyme Disease Association and call for assistance -- they will be very helpful.

Good luck!

#13 pacificmama

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Posted 04 March 2010 - 11:03 PM

I'm curious, do you know if the bite is 'typically' obvious? I know in my girlfriend's case it was even 10 years after incident.


While it is sometimes quite obvious, and may leave a scar, this is not the case in the vast majority of cases. Which of course is the problem. It seems unbelievable that a person would not see the tick, but a tick in the nymph stage (which does most of the biting) is no bigger than the period at the end of this sentence.

Here is a picture that shows that:
http://www.lymedisea...bout_ticks.html

#14 sf_mom

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Posted 04 March 2010 - 11:08 PM

Interesting stuff... again, in my girlfriend the bite is very obvious and they still missed diagnoses for 10 years. I think she was tested for Lyme originally but it was a false negative. Finally, sent to the right lab and got proper diagnoses.

#15 bubbasmom

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Posted 05 March 2010 - 12:19 AM

I consider myself an intellegent person. Never went to med school, no biology degree, but always felt I could hold my own in a conversation. However, since my son has PANDAS, sometimes I feel I can't hold an intellegent conversation with a 3 year old!!! So often all of the medical stuff just needs to be broken down for me.
So I am very interested in the Lyme Disease concept. My son's first major episode was 2 weeks following a hunting trip. We have had him tested, and although I have not seen the results for myself, my pediatrician describes it as this: the test has maybe 10 sections to it. You have to have perhaps 5 positive to have it considered it a positive result. My son has 3 sections positive.
So to me there must be something there. The doctor disagrees and insists that it is a negative test.
All of the information you all have posted here is well over my head. Aside from the fact my brain is fried since we've been in a major PANDAS episode since September (including violence, school problems, social problems and more) So I'm a little tired.
Can you tell me specifically what I should be looking for when I request his test results?
Also can you tell me if any of these things are related to Lyme: migraines, lack of social skills, anger management issues and basic ODD symptoms.




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