posted
...strep. Specifically, high strep titers and a pediatric neuroimmune disorder called PANDAS, though I'll have a hell of a time getting tested and treated since I'm an adult now.
I just read a book about a boy with OCD and Tourette's, 'Saving Sammy', and apparently high strep titers combined with this neuroimmune disorder called PANDAS, in which the immune system mistakenly attacks parts of the brain instead of the strep bacteria in the bloodstream, was the cause. Augmentin cured him.
I'm even more convinced when I consider...
1) As a kid, I was always getting throat and sinus infections and was rarely placed on antibiotics once I hit puberty. And when I really began to downslide in my 30's, I had some sort of chronic upper respiratory infection going on, and my daughter was always testing positive for strep at the doctor's.
2) I have a L vocal chord polyp and burst my L eardrum (blood found in my L ear). Never got my voice back totally.
4) My mother apparently had scarlet fever as a child, and by the age of 40, her gums dissolved on her, too. She had to get false teeth when I was really little. Was she a carrier? I believe she had me at the age of 35.
5) I have this 'network' of spider veins over the L side of my chest ONLY, which no doctor has yet been able to explain - aortic regurgitation from strep-related rheumatic fever? Will it eventually end in heart failure if not treated?
I became even more convinced when I read the following, since OCD and EMFs both are an issue with me...
'Saving Sammy - A Mother's Fight to Cure Her Son's OCD' by Beth Alison Maloney, pages 100-101(Published by Three Rivers Press, 2009)
"...He told me the house was full of invisible walls. They sprouted like lasers in every direction, from electrical outlets, television sets, portable telephones, and DVD players. The beams formed a complicated series of barriers. He had to step over or duck under each one, depending on their location. They accounted for the Spider-Man-like-way he made his way through the house. He clung to the actual walls or, when he let go, moved like a thief after a protected gem.
We taped up all the openings from which the invisible walls might pop, but they managed to sneak through the tape. Even when the invisible walls were missing, he still had to go over and under where they might be. If he touched one by accident, he had to start the process all over again. Since the walls were invisible, he could never be sure whether he had touched them, so he went through the motions again and again..."
So should those 'clinically' diagnosed with Lyme or those who aren't improving get their strep titers tested?
By the way, I had more seizures this past Wednesday, seizures in which I put my arms out in front of me, clenched both fists and stared; dropped phones and didn't respond. Another ambulance trip and still no answers, or even meds.
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momintexas
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There have been reports on ANDAS which is the adult onset of PANDAS.
Do you have a Dr that would be willing to run your ASO titers and your Anti-D-NASE B?
Have you heard about the Cunningham study?
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posted
I really think I had PANDAS as early as 12, but if they are willing to dx me with adult onset, that's fine.
What do ASO titers and Anti-D-NASE B show? Does it confirm ANDAS? And no, I've never heard of the Cunningham study.
I do remember my immunoglobulins being extremely low in the past, not much better than an AIDS patient's, back when I weighed only 88 lbs...before antibiotics.
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momintexas
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The ASO titers and Anti-D-NASE B will show strep levels in your blood.
There are others on here that have more experience with the Cunningham study that I'm sure will weigh in.
You would have to find a PANDAS Dr near you to confirm a diagnosis. I'm trying to find the site now that gives a list of Dr's
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momintexas
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Yes, that is the list I was looking for!
They are not all pediatricians.
I don't know anything about any of the Dr's except the ones in Texas.
I would start by calling the ones listed near you and go see what they say.
I know several people in my area who have children that were diagnosed as PANDAS and have come to find out later on it's really Lyme - or they have Lyme in addition to strep issues.
There seems to be a direct link with strep, Lyme and mycoplasma. All of them can cause PANDAS type of symptoms.
Look up PITAND as well.
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momintexas
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I'm sure others on here will chime in though that have more experience.
We looked into it last summer for our son and I though for sure we had found the answer. Especially after reading Saving Sammy.
Some LLMD's are aware of PANDAS as well.
Be aware though - one of the parts of the treatment is a steroid burst.
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momlyme
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My son has high strep titers... and a positive Elisa + Western Blot test for LD.
Also tested IND for Bartonella & Babesia through Quest... LLMD says that's as good as positive.
Do not overlook the possibility of having both ANDAS and LD/TBI!
With multiple infections... look into an immune system suppressant as being the cause... either mold, heavy metals or both. We are finding that a combination of immuno-suppressants (including the prednisone/ steroids he was prescribed in Aug 2010) has contributed to the intensity of my son's chronic dis-ease.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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map1131
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I believe ticks, spider, blood suckers can carry it all virus, parasites and most certainly bacteria.
I believe I also have strep somewhere hiding out in my body. I've been bitten so many times by spiders and ticks, fleas, etc over the 12yrs+.
I did every imaginable abx and combo for over 3 yrs early on. Have done some just in the last 2 yrs.
But I used my rife machine for strep and staph for several years now. I can chase things into dormancy and then they pop their ugly head up again.
I've never had the streph blood titer done. I think I will on my next visit. But I truly believe these super bugs aren't traveling by blood alone.
They bunker down inside their preferred place be it the heart, liver, colon, kidney, ear, brain, muscle, bone, etc.
That's why this so much more than just simple lyme disease bacterial infections. It's a master combo of virus, bacteria and parasites with no telling whatelse thrown on top.
Including our horrible enviroment in and outside our bodies.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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MichaelTampa
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Many with PANDAS will also have lyme.
I wonder if those spider veins are a bartonella (lyme coinfection) rash. I'm not an expert on the rashes, but wonder about that.
By the way, the EMF sensitivities are more common in lyme than PANDAS, so I would consider that another clue.
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posted
I don't know...I'm just depressed anymore over all of this. I watched my gums dissolve...no doc would give me antibiotics in time to save them. My voice is gone...nobody would give me antibiotics to save my vocal chords. Now my basal ganglia is being eaten into OCD?
Why am I even alive?
I was on steroids a short clip several years ago. I felt better while on them, though being on them never cured my OCD.
My OCD is pretty serious, too. Last summer my neighbors noticed me OCD-ing my mulch outside (don't ask), and they mentioned it to me because I looked insane doing it. The best part is I KNEW I looked insane doing it, but I HAD to do it.
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I have Cefdinir to start, but having to 'prove' these stupid seizures to the neurologist (so I can go on anticonvulsants) are preventing me from being able to start it. Would Cefdinir wipe out all forms of strep?
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posted
Definitely have a doctor run the ASO, Anti DNase B and the Streptozyme tests.
Those three tests together work well to detect strep in the blood. Those are the three tests that my LLMD uses to check on my strep levels.
I have had extremely high strep levels in my blood. At one point my DNase test was 1380 when it should be below 85 for adults.
If you do have chronic strep it can be very difficult to treat.
It has taken us 2 years of treatment and finally my strep is coming down. My last round of tests shows that 2 of the 3 strep tests that she runs are now in normal range.
BUT I just want you to know that you can have strep and lyme. I have both as well as other tick borne infections.
I too hoped that by getting rid of the strep I would see big improvements in how I felt but unfortunately that hasn't happened. Despite my strep levels coming down so much I don't feel much different yet. So just keep that in mind.
OH and my treatment for strep is difficult and took switching around different antibiotics. I took Cefdinir and it didn't do anything really for my strep. So just taking that may not be enough for the strep.
We had to play around with different combinations of antibiotics. What seems to be working (KNOCK ON WOOD) is the combo of Ceftin and Doxy. That was bringing it down but we also then added in Clindamycin to that mix. So the combo of all three seemed to be knocking down the strep.
Definitely check into the strep as it is an important piece of the puzzle but don't rule out other things as well.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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posted
I think clindamycin didn't really do anything for any of my symptoms though, nor did doxy.
Clarithromycin and especially cephalosporins (Rocephin, Ceftin) were the ones that seemed to hit something in me. And in that book, "Saving Sammy", it took HIGH doses of Augmentin to cure him of his OCD. I might need that since I have the OCD...?
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momintexas
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Doxy won't do anything for strep.
See if you can get tested for strep though so you may have a better idea of what you are dealing with.
Have you ever been on Zith? Have you ever been tested for any of the mycoplasmas?
Your OCD could be coming from inflammation too....
Ditto on everything Pam08 said. Posts: 1408 | From Tx | Registered: Nov 2009
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sutherngrl
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There are medications that will help the OCD while you are treating the infections. There is no need to suffer with OCD.
I developed a mood disorder from lyme, and also started having obsessive thoughts. Risperdal stopped the obsessive thoughts and stopped the mood swings.
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posted
My OCD is MEGA big. SSRIs never helped any of my symptoms, not even meds like Seroquel, unless sleeping 20 hours a day is considered a 'cure' or an improvement because I can't OCD when I'm asleep.
Doctors never listened to me when I'd try to explain that the only reason I was OCD-ing fewer hours per day on a certain medication was because I was awake fewer hours in a day, or simply fatigued, not because I was actually reducing the length of any of my rituals or my anxiety over having to do these rituals was decreasing. I still wanted to do them, but was too tired to do them or ANYTHING.
Also, normal healthy people need to clean their homes. All SSRIs did for me was to cause me to be so fatigued that I couldn't clean anything, period...definitely no energy to 'OCD-clean' things in my home, but not even energy to clean it 'normal', whatever that is...I even forget.
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seekhelp
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Can you tell me where one gets the Anti-D-Nase B test? I can't find it on LabCorp's test menu or my local hospital lab. ASO titer is common.
quote:Originally posted by momintexas: The ASO titers and Anti-D-NASE B will show strep levels in your blood.
posted
Seek...my LLMD orders the DNase test through Quest. It should be a pretty common test. I checked the Labcorp website and they do have it.
If you look alphabetically it is in the A's. It should be on page 8 of the alphabetical list of tests and is 3rd from the bottom.
I wouldn't discount any antibiotics for the strep. Everyone seems to react differently to medications. What may work for strep in some people may not work for others etc.
Doxy isn't typically known to be good for strep but for me the Doxy is definitely helping. When we added it in to the mix that is when I started seeing good progress with the strep. It seems like for me finding the right combination of antibiotics was important. Alone (or with other meds) each one wasn't as effective as when I added them in combo together.
Taking the Ceftin and Doxy together was really when we started getting somewhere. I think the Clindamycin is just an added bonus but for me personally the Ceftin and Doxy seemed to be getting the job done on their own.
We have tried other antibiotics but this is the combo that seems to work for me. You just have to play around with them and see what works best for your strep if you have it. The blood tests will show you which meds are working and which ones are not.
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
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