Chronic Strep Infection? Or any ideas??

[kater]

I have been reading with great interest , the discussion on strep (oregano oil thread). My daughter is almost 20 and has been sick almost as long. She has never been diagnosed with anything other than IBS and Atypical Childhood Migraine Syndrome and a while back her morning cortisol levels were very high. She was a healthy baby but when she started eating food the problems began. Constipation, rashes, fits of behaviour where she would shriek and bite. When she was 3 she started having severe

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[kali]

Kate,
What is her dental history like? Does she currently have any root canals or teeth that have been pulled (maybe improperly). It sounds like the trouble started when she was very young but it is just a thought because I just read a book by George Mening in which he describes a young boy being expelled from school for very extreme behavior that was later found to have come from a dental infection that infected the cortex of the brain and caused severe central nervous system issues.
Just a random thought….but it might get other thoughts going…..
I wish you the best,
Kali

[kater]

thanks Kali
she has perfect beautiful straight white teeth–the envy of our family! She doesn’t even have wisdom teeth. From a dental persepective she is a dream– 😀 I think she has had one small cavity in her life and it was filled with composite. She has clearly always been very sensitive to things, but something really went awry after that dreadful strep infection. Within minutes of getting it her neck swelled like she had golf balls on each side. It took a couple of rounds of abx to clear it. Scary!
thanks for your thoughts
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[kali]

So Kater,
You have SD and your daughter has some sort of chronic illness?

Here is something you might want to check out. I am sure there are other similar articles but it sounds like there can be link between your disease and your daughters health issues. I am sure you have already come to that conclusion. I think there is a story in THE ROAD BACK about a child having lots of difficulty and the mother had RA.? Maybe I am just imagining that. I will have to get it out and look…

http://www.sciencedaily.com/releases/2003/11/031118073600.htm

Kali

[kater]

Oh my Kali
I haven’t made a connection between my daughter’s health and mine as they are two such different things and she has been sick always, me just recently. Anyway, when I clicked on the article it rather took my breath away. I read it but still in this moment can’t fully process it all. I had a son who died 21 years ago at the age of two. You will never guess from what? He had a complex congenital heart defect–not heartblock as in the article, but in the end he died of postop of horrendous fibrosis of his heart muscle from the strain of faulty circulation. What hasn’t been lost on me is the thought that SD can do (but god willing will not) the same thing to my heart. Is that article saying I may have fetal cells from my babies circulating in my blood? Like I said my head is swimming a little here. I have done a great deal of spiritual work to let him go and that maternal bond goes very deep but I am a litle surprised at this. If you have any more info please send it on. Who knows what strange thing may turn up to help up both, or us all!
hugs
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Eva Holloway]

Kate,
has your daughter ever been checked for rheumatic fever? My oldest son had this and we caught it very early and he spend a whole summer on the couch, resting and not able to do a thing. he run a low grad fever, had headaches and just totally felt very bad. When I read the story this is what I thought of right away.
Eva

Eva Holloway

[kali]

Hi Kate,
I really have no idea about how all of this transfers to our ‘biological pasts’. Like your SD for example. Was there always a dormant critter ‘laying in wait’ or did it just happen due to circumstances in your current life…not your in-utero one! Do you have a family history? If not, what brought it on..? And bigger still, could the issues with your offspring be related? All big questions to ponder.
I will have to read that article again to fully grasp it – but it did sound like it was saying that the fetal cells are transferred to you which makes total sense since you connected by the same tissues and an umbilical cord.

About your son – I know it was a long time ago – but I am terribly sorry. You’ve had a lot of pain to deal with – I hope that you have much healing this year.

Big Hugs to you too,
Kali

[lrobertson]

Hi kater,

I am the person who originated the discussion on oregano oil. First, I have RA for 35 years which has not been fun, but this strep group b thing for only 3 months and has been so horrible I can’t imagine your daughter and yourself going through this for 20 years. My heart goes out to both of you. Very similar symptoms of your daughter and myself. I too couldn’t get off the couch or bed, barely made it to work and when I did spent much of the time on the couch there too in the breakroom. When I was at my worst, my morning cortesol levels were off the chart high, and they never even made it close to normal even at night. I have since discovered, that for me at least, it was my body fighting the bug. LIke the fight or flight mode where your heart beats hard and fast and sweating and anxious….exactly what I was experiencing. Another coincidence is my arthritis is worst in October and spring. Actually even though I live in rainy Washington state, I do better in winter or summer. also I had strep and tonsilities many times as a child.

Finished my third round of antibiotics. Ampicillian then 2 rounds of amoxiccilan (sp). It was amazing how much better I felt on antibiotics and then once off them “it” came back. I am one week off the 3rd round and so far so good. I feel a little weak and shaky today, but much better than the last 3 months. Like your daughter, all the blood testing in the world (except for cortosol) showed nothing, but once on the antibiotics I felt better. Now I am just doing everything I can to strengthen my immune system taking vit C and B and D especially. also taking the oregano oil to help fight the strep bacteria. Starting very slow (only 2 or 3 drops) as I don’t want to intitate the herx from hell and I am extremely sensitive to any medications or suppliments. Never know how it is going to affect me. FYI what started this whole mess was my rheumaologist put me on immunosuppresents (methotrexate), and the strep must have come alive in my body again due to my low immune system.

Once I feel 100% (God willing soon) I plan to start minocycline again for the RA. Been off mino for about a year, but ready to start again, but not sure what dosage. Don’t have any docs in this area that really know how to treat me. For Maz (youa re such a blessing to all of us), I did call Dr S and he told me if I were his patient he would put me on IV clindy and oral mino. Easier said than done. I spoke with my rheumy and he was not comfortable at all setting me up with IV clindy. Not sure where to go now to get the RA under control and keep that disgusting strep at bay. Hope and pray your daughter continues to improve. Laura

[Parisa]

Kate,

Does your daughter still have her tonsils? It became more common in this generation to preserve the tonsils and not remove them which has created a subset of patients with bad tonsils that harbor a constant source of low grade infection.

[Krys]

Hi Kate,
My heart goes out to you and your daughter. I’m so sorry she’s been through so much most of her life.
You may find many answers to her condition at http://www.gapsdiet.com. Go to RESOURCES and the second link: Probiotics: Healing the Mind CAM magazine 2003 http://www.gapsdiet.com/uploads/Probiotics.pdf is very illuminating.
It is the only article I have ever read that helped me understand a lot health issues within my own family. It makes sense and connects all the dots.

“…What I am seeing now are generations of people in this country with compromised gut flora – because I don’t just examine the child, I get a full medical history of the parents and the grandparents.
A grandmother, for example, perhaps has arthritis, which is another sign of toxicity in the body. When opportunist and pathogenic bacteria occupy the gut, they produce a lot of toxic substances. These toxic substances seep through into the bloodstream and settle in different tissues of the body causing an auto-immune attack on those tissues as the immune system tries to clean the body up.(…) So the grandmother will have arthritis, or rheumatoid arthritis, or allergies or digestive disorders.
“A baby is born with a sterile gut and as the baby goes through the birth canal at birth, it swallows its first batches of bacteria. So a major part of the gut flora which would populate the virgin gut of the baby, comes from the mother. So this grandmother gives her compromised gut flora to her daughter. So now the daughter will be prone to PMS perhaps, to migraines, to digestive disorders – that’s what I see in mothers of autistic children. Between 95 – 100% of mothers of children with autism, hyperactivity, asthma, eczema and other problems, also have conditions that are related to abnormal gut flora.
…A lot of these children have low stomach acidity. So when they start solids …they usually can’t digest them.
“…because the normal gut flora plays a huge role in digestion and absorption of food, these children go on to develop multiple nutritional deficiencies. In parallel, the pathogenic flora convert the food into a whole host of toxic substances…”
There’s a lot more there.

Kate, I am posting the above link not to look for blame, if you find the article applies to your family, but to offer the way out, as this program does. If it does not apply, I promise that the reading is fascinating.

Speedy recovery and well-being to both of you, Krys

[Maz]

Kate, I’m just playing catch-up from a few days away. What great replies you’ve already have had from the pool of amazing wise people here. One thing that popped to mind was to research PANDAS. This may or may not be connected to your daughter’s condition and remains controversial. However, it was a subject that was covered in one of the talks by one of RBF’s antibiotic protocol physicians (Dr. H. R. in CA) at the last ILADs conference in Toronto in Oct. This doctor trained under Dr. S. and specializes in SD (she compiled the “Our Roads Back” book):

http://ilads.org/lyme_programs/lyme_events.html

If you would like to connect with this doctor to see if you can retrieve any further info from her on this topic, I’d be happy to PM her contact info. You may also be able to purchase the individual DVD of her presentation from ILADs.

Also, here is a link to the PANDAs Foundation:

http://www.internationalpandasfoundation.org/obsessivecompulsivedisorder/Home.html

Children being treated for their strep are having miraculous recoveries from years of neuro-psychiatric illness.

[kater]

thank you all so much for your input, insight, intelligent words and kindness. I am wading through all the articles and things that have been sent to me here and on Yahoo and will make a more detailed and considered response to you all when my thoughts jell. In this preliminary moment my thoughts are that she was born very sensitive and then I do wonder if her issues are actually from the strep, or from the antibiotics. She has always had huge gut issues and there has always been disagreement from specialists as to whether her head affects her gut, or vice versa. I say vice versa. My momentary thought is to get her on d3, probiotics and digestive enzymes and get some testing done for strep, myco and maybe lyme. We have rather given up on finding an answer for the last while and a very dynamic and beautiful young woman has learned to live her life at half speed. I am a little overwhelmed with thoughts and expenses to begin all this once again and in the midst of my own struggle, but begin we have, and prevail we will. ➡
gratefully
kate and her girl

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Parisa]

Kate,

Finding the right treatment and the right doctor (and covering the expense!) can be overwhelming. The important thing is that you have started to explore different options. I truly believe just pointing yourself in the direction you want to go even if you hit roadblocks and make some detours along the way will eventually lead you to where you want to go. Unfortunately, many of us here have not had straight paths to wellness but I think what truly benefits most RBers is their willingness to go outside of the box and to pick themselves up and find something else when things don’t work out. So take a breath (or many) and things will eventually fall into place.

[Parisa]

Hi Kate,

I thought I would post this article I found about strep and neuropsychiatric disorders that showed some good results using cleansing of the blood with either IVIg or plasma exchange.

http://www.nimh.nih.gov/about/director/2010/microbes-and-mental-illness.shtml

I would also second the opinon A Friend gave earlier about looking into healing the gut with GAPs diet. My daughter went gluten free but then went on to still have many intestinal problems. Being a teenager she was never able to stick to the diet for long periods of time but just doing it off and on has been a big help. Eating bone broths is an important part of the recovery. I definitely believe that gluten can affect the brain as my daughter would become extremely emotional whenever she was exposed to some on accident.

[kater]

Thanks Parissa!
very interesting article. I work with special needs kids in a school so I am also learning lots of new things to bring to the table there. My daughter has always had gut issues and we have worked hard on it. She sticks to her diet perfectly but is awful about remembering to take supps–I never understand that because it is so easy compared to the diet. She has been a strict vegetarian so getting bone broths into her isn’t going to happen I don’t think. You can read what I just wrote about her under the Confused about AP post. Thanks again for all your support
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

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