Chronic Strep Infection? Or any ideas??

[Parisa]

Kate,

I just checked the GAPs diet page and they also recommend fish stock so your daughter could do that instead of the meat broth.

[kater]

Thanks for all the interesting links and info my friends. Just to update (and vent a little– 👿 ), today my daughter and I went for far infrared sauna and lunch,–having a nice time, and then she had a bad episode of bleeding from the bowel. While she has IBS, she has never had anything like that before. I took her to the hospital and the ER docs said they thought she was celiac though it has never shown in blood tests. They wanted the gastro guy to come and do barium enema and scope today, but he just phoned and said he thinks it is “just” some sort of infectious or viral colitis, therefore not relating to her ongoing problems. I think this is so much bunk!! We were very excited in a strange way that there was some obvious problem and thereby she might get some help. They just sent her home and ordered some stool tests. The ER docs said to push our gp to get her in for a gastro consult-always a long slow grind that seems to come to dead ends. I even asked about the strep infection idea and he was very polite but obviously is a mainstream thinker. I will push for more testing for her. The IBD idea was also mentioned and on reading that I see that is classified as autoimmune. Round about we go! Obviously some serious gut healing to do. I am not sure if the sauna might have exacerbated something that was going on, also she has been very stressed this past week and a half. I am not sure how to find enough time, energy or money to keep trying to get us both better. Big sigh. Thanks for all your kind thoughts. I would welcome any thoughts on what sort of tests I should ask for.
kate
as for myself, I have added acupuncture and whole body vibration to my routine and if not improving, I am at least stable 😀

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

[Trudi]

@kater wrote:

she had a bad episode of bleeding from the bowel.

Hi Kate–
Just an FYI–when I was put on high dose Vitamin C, I started bleeding from the rectum–it looked like I had my period. As soon as I stopped the Vit C, it went away. However, for the longest time, if I even had an orange juice, I would have an episode. I had an organic acid test done and even though I had no large intake of anything containing Vit C for the longest time, it showed that my ascorbic acid was elevated “suggesting the patient is taking supplements” which, of course, I was avoiding. My body obviously wasn’t metabolizing it properly.

So, in case she is getting a lot of Vit C, this could cause some problems as far as bleeding–

Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[kater]

thanks for the lead Trudi! I will check that out with her but don’t think she has been taking an C or eating out of the ordinary (for her). I have been trying to get her to take probiotics regularly and 3000 iu of d3. I shouldn’t think these things would cause her problems. I will talk to her tonight. She is very low today as she had yet another problem and nobody did anything for her. Pretty disheartening after 20 years of it. I will pass along your message
with gratitude
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

[Trudi]

Kate–
You are welcome!
Have you seen this thread on colostrum? https://www.roadback.org/forum/viewtopic.php?f=1&t=6875 I’ve done a bit of research on this today and this definitely sounds promising and may be of help to your daughter.

Here is an article that I thought explained it quite well–you need to scroll down about half the page:
http://www.colostrummilk.com/

Best wishes to your daughter and you–
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Parisa]

Kate,

Something else to look into would be low dose naltrexone (LDN). Even though I have been gluten free for six years, my gut hadn’t healed and I was getting inflammation in other areas of my body. I have been on it for about three months now and am getting good results. My doctor says that he has had good results with patients that have colitis, crohns, etc.

Sorry to say that only the more alternative doctors prescribe it but I wanted to put it out there.

Here are some links

http://www.lowdosenaltrexone.org/ldn_and_ai.htm

http://health.groups.yahoo.com/group/lowdosenaltrexone/

[kater]

Hi All,
Just to update you on today’s events–so exciting! I took my daughter to a different naturopath who spent an hour and twenty minutes with us! He was quite intrigued by her history. He does regular naturopathics, chinese medicine, and can also do prescription drugs and labtests in BC. He thinks her liver function and digestion are weak and wants her to return to regular acupuncture as that has helped her before. I have been going to our local TCM school for treatment and they are amazing and sooooo thorough. You get 4 or more acupuncture treatments, and chinese and western herbals (she’s not going near that right now though) for 40$ a month. He also wants her to slowly build up to some chinese medicine called Xiao chai, magnesium, probiotics, D3, and LDN!! I had LDN on my wish list but he actually brought it up first. Wonders never cease. I am very optimistic, my daughter is afraid to hope as she has been disappointed so many times before. I asked him about the strep idea and he didn’t dismiss the possibility and said he would consider antibiotics if the LDN doesn’t work. He also had a few other things on his try-next list so I am thrilled that someone is trying to help her.
An update on me, my hands are continuing to improve and the last couple of days the tightness in my body seems a little better. Got my bloodwork sent off to IGENEX today–my what a process! Most exciting though, my energy is so much better. That veil of chronic weariness seems to be lifting and many days now I am not needing a nap. Wow 😆
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

[kater]

Some great news! (I took my daughter to the LLND in Richmond today and he feels certain there is an infectious origin to her strange illness. I know, only a person who has been sick for 20 years and her mom would think this is good news, but hopefully an avenue of treatment will show up! He is testing her for Lyme, Anaplasmosis, Bartonella, strep, myco, cpn and a couple of other things that my travel weary brain can’t remember in this moment–oh the cd57. I didn’t have to argue, beg or plead (just pay 😆 , but almost all of it to the labs, not him)–he just thinks like we do. Wonders never cease! I just found out my daughter’s friend has MCTD ( interesting coincidence if there is such a thing) and hoping she will go see this doc too. My illness will all be worth it if in searching for answers for myself, I can bring healing to these two beautiful young women. A hundred thousand thank yous to all of you–it really was a lucky hit when I found the Roadback!
While I am here I will give you a “me” update. My Clindamycin was upped 3 weeks ago from one day a week to 4 and I have been herxing a lot–all my symptoms have been a lot worse, tight skin, aching everything, burning feet, itching skin, though I think it is calming a little the last few days. He added glucosamine, chondroitin and cats claw to help repair all my damaged connective tissues, and will add Rifampin when the herxing settles. My Bartonella test was inconclusive–sounds like there was so much inflammation they couldn’t tell what was what so not having that redone in this moment. My cd57 was quite low at 38. The doc thinks I should expect to feel improvement in a couple more months. Here’s hoping! 😀
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

[kater]

Some great news! (I took my daughter to the LLND in Richmond today and he feels certain there is an infectious origin to her strange illness. I know, only a person who has been sick for 20 years and her mom would think this is good news, but hopefully an avenue of treatment will show up! He is testing her for Lyme, Anaplasmosis, Bartonella, strep, myco, cpn and a couple of other things that my travel weary brain can’t remember in this moment–oh the cd57. I didn’t have to argue, beg or plead (just pay 😆 , but almost all of it to the labs, not him)–he just thinks like we do. Wonders never cease! I just found out my daughter’s friend has MCTD ( interesting coincidence if there is such a thing) and hoping she will go see this doc too. My illness will all be worth it if in searching for answers for myself, I can bring healing to these two beautiful young women. A hundred thousand thank yous to all of you–it really was a lucky hit when I found the Roadback!
While I am here I will give you a “me” update. My Clindamycin was upped 3 weeks ago from one day a week to 4 and I have been herxing a lot–all my symptoms have been a lot worse, tight skin, aching everything, burning feet, itching skin, though I think it is calming a little the last few days. He added glucosamine, chondroitin and cats claw to help repair all my damaged connective tissues, and will add Riflampin when the herxing settles. My Bartonella test was inconclusive–sounds like there was so much inflammation they couldn’t tell what was what so not having that redone in this moment. My cd57 was quite low at 38. The doc thinks I should expect to feel improvement in a couple more months. Here’s hoping! 😀
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

[matv]

Kate,

That’s wonderful (ironically) .. I go see Dr. C first week of may. I’m excited myself hoping he can help me figure things out. I almost wish your daughter tests positive so the treatments can begin but regardless it looks like you found someone willing to try! So good.

I head back to Victoria Thursday. Exc[*]ited and nervous.

Could you pm me the address of the place you did the FIR? I know of one on government street beside Monty’s, but they charge like 100 dollars per session. Crazy.

I’d live to get accupuncture done as well, the few sessions I had here in Ontario have helped with pain and such as well.

[kater]

many years, tests and doctors later my daughter has tested positive for anaplasmosis, and good indicators for bartonella and lyme.
Her strep titer was also high, but not positive. So, for her 20th birthday she is starting on doxy ( she calls herself a doxygirl now) and weaning onto a full program of herbs and other treatments–and sad as it might seem to have these illnesses, for her a diagnosis offers a ray of hope in a lifetime of believing that her body has just failed her. I cannot begin to tell you what a gift it is for me in getting scleroderma, to find all of you and thus this bit of hope for her. It is the best mother’s day gift ever. (She was born on Mother’s Day and that was precious special too).
thanks again
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

[Parisa]

Kate,

Sounds like you’ve found a great doctor. It’s great that your daughter will be able to start the LDN. Be prepared for a flare/herx about 7-10 days in. I started at 3 mg and around day 10 felt completely wiped out and developed a lot of inflammation in my right shoulder. I ended up going to acupuncture for the shoulder so it’s good you already have an acupuncturist.

[matv]

Kate, I struggle to say that that’s great, when it’s not. She has a course to follow though. Im very happy you finally have the answers you were looking for. Hope we can get together for another tea. She should come too! We can form our own little exclusive club! Haha.. Ahh. Well, here’s to hoping doxygirl can begin her healing to keep the infections under control.

[Author]

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