sf_mom

I have had Mycoplasma and have picked it up again recently along with entire family. The first time I was tested was well over a year ago and don't remember values or if it was IgG verses IgM. I was not too concerned because it was being treated along with my Lyme et al diagnoses. Most recently, I tested again for Mycoplasma via ART muscle testing...... so no blood work. I could tell I had picked mycoplasma about a month ago. I had lingering sinus issues that were not clearing that eventually had some green discharge, kids appeared to have cold with lingering cough but no fevers at same time. Anyway, my antibiotics were rotated to treat Mycoplasma more directly and I felt better almost immediately. I have now been on Azithro/Doryx (doxy) for mycoplasma for six days and all my sinus issues are resolved. I am also on Mepron for Babesia treatment. My children are rotating to Azithro with herbs to treat. The one child that has not been rotated yet is still struggling with a cough. There is a huge debate on IgG verses IgM response and if IgG only indicates chronic infections. Regardless... I think it would be valuable to try a treatment course of combo'd antibiotics in light of symptoms and test result indications. You may know this already but asthma is associated with chronic mycoplasma coupled with fungus issues per our LLMD. There is some research on internet that is easy to find regarding chronic mycoplasma/asthma. Good luck

Dr. H in Redwood City "LLMD" sees many chronic fatigue patients that don't have Lyme. He would be the best at ruling out Lyme and all the other infections/viruses that could be causing symptoms. My guess with CFS is multiple viruses are at play and perhaps a chronic infection of mycoplasma or chlamydia pneumoniae. MDL has a great viral panel if the want to run additional tests immediately. Dr. H also knows how to treat adrenal fatigue and lymphatic symptom if its playing a role in illness. I do not believe Dr. H sees patients at first visit any more. Typically, you can see one of his associates for preliminary testing and are then rotated into a visit with him once results are in. I think the wait time is about 2 to 3 weeks for first visit and there are Saturday appointments with Dr. G his associates. There are also a couple of good LLMDs/Integrative Dr. similar to Dr. H in Los Altos as well. You are welcome to PM me if you are not familiar with Dr. H's full name and his associates. Or would like other references.

Perhaps Coxsackies otherwise known as "Foot and Mouth" typically sores on face, mouth and feet. You can run for titers via Lab Corp.

As for Lauriciden.... we put a little in juice and he just swallows 'like a shot'. Twins are just too young and hoping sometime in the future we'll get them to take it. Try coconut water as a replacement. We are dairy free so instead of juice or water.... We give 'Kid's One' which is coconut water with a little juice and available at Whole Foods. I have to go back and reread article with regards to demylination.... We are using Multi Immune Transfer Factor and ATP Fuel as supplements which supports ATP. Constipation has been an issue for younger DS as well. We had it horribly prior to Lyme treatment and now its cropping up again. It happens to coincide with treating for KPU and fungal infection. We stopped Core for now and are seeing improvement with fungal infection. Something about the heavy metal release I suspect. Anyway, I think you are already adding fiber daily. Perhaps try some olive oil daily for constipation if you take away magnesium. I think the constipation is a clue... to what I am not sure. As for the Fry Labs.. all have had some type of biofilms again it is a question of how severe are they. I think you can treat if response is horrible.... maybe give breaks, pulse or revisit a little later but strongly feel it needs to be 'part' of treatment at some point. Edit: We are considering with LLMD on breaking out some of the supplements for CORE and treating with them individual. We are not there yet but will update if/when we use alternative. -Wendy

It does suck. Treatment is expensive, period. I would assume biofilm's are there........ and just treat. Don't even worry about a baseline for biofilms and maybe consider testing later when you are close to rotating down and off antibiotics. Expect an increase in symptoms. Keep up with everything you know is working and rotate the detox and lots of it. As you know, it all matters and if I could single out just one theory/treatment that has worked I'd share. It all matters, unfortunately. From both the experiences posted, these kids do get better..... they do get better and maintain progress. I would also recommend rotating biofilm treatments to ensure the best possible outcome long term. -Wendy

This is an important topic and one I've been communicating off forum with others so I thought I'd share what I know. A good way to discover how impacted you are by biofilms is to do the Fry Labs Blood Smear for Bartonella and Protozoa. I am sorry but I forget how expensive the test was and if its covered by insurance. Their results will tell you if you have few or substantial number of biofilms. You will see an image of a biofilm or bofilms if present. I have seen several results and some are highly impacted while others have very few. I do not know if their presence is indicated on level of severity of illness but those that have been very sick have had a high number of biofilms. Dr Fry confirms this in article attached. I think running the test it would at least provide a baseline of biofilm communities for your child. The test is now also looking at a bacteria called Protozoa which is Babesia like in nature and loves to form biofilms and is indicated along with many other auto-immune illnesses but specifically sighted is Lupus/MS. Again, biofilm's could harboring many infections inclusive of mycoplasma and strep. In the article, Dr. Fry sights why he recommends against supplementing with magnesium. His thoughts are similar to Dr. Klinghardt's and his reasoning regarding magnesium. We have two LLMD, one following Klinghardt protocol's more closely than the other and are split on the need to supplement. We have suspended supplementing to error on the 'I DON'T KNOW' for sure if its helping or hurting as we treat for biofilms. http://www.mdjunction.com/forums/lyme-disease-support-forums/studies-research/3337189-drfrye-interview-bug-protozoal-infection-112011 We have also been treating biofilm's since last January for older DS. We did not originally do the Fry Labs Blood Smear for this child but hope to in the near future to confirm if its still an issue. We have done several different protocol's to treat biofilms.... first was an EDTA blend 'an enzyme supplement' from Klaire Labs called Interfase Plus. I do not remember exactly the rotation of detox at the time of treating but would anticipate a lot to be released inclusive of heavy metals when treating. We also witnessed a huge herx... with dark circles returning, a withdrawn pale look and on-set of coughing TIC lasting at least six months. I was happy to stop after six months of treatment. We took about a month break and started with Boluoke and drops of BioSil (5 drops x 2 daily) to help deteriorate the films further. We are also using Lauricidin to help deteriorate but can not get my younger twins to take product. Currently for detox we are using bentonite and chlorella... but have rotated others occasionally for specific organs. Treating was not a fun process but necessary 'I believe'. Good luck. Edit: I think PEX would help tremendously with the number of biofilms but that is just a mother theorizing.

Fox news just aired this story. http://foxnewsinsider.com/2012/01/13/what’s-the-mystery-illness-causing-12-high-school-girls-in-new-york-to-suffer-from-tourette-like-symptoms/

We too are building toward 1 tsp of Mepron x 2 day for younger DD. It has been a unique herx response to date... She does not typically suffer from OCD and only had some reassurance hugging when we first started treating Lyme. After starting Mepron, she started hoarding, wearing several layers of clothing, repeats a few particular outfits of dance wear or princess outfit under her tops and carrying several bags stuffed with odd things around with her. She is taking her brothers clothing and stuffing them into her dresser, etc. She is also slurring her words again and often sitting with her tongue hanging out, mouth open. Things seemed to settle after about 6 weeks but we just upped her to 3/4 tsp two days ago and she already has an increase in mood liability. I can assure you from my own treatment of Babesia, I too at times don't feel motivated or like doing much. I am often overwhelmed by too much background noise or intolerant of too much activity. My best advise is to focus on as much detox as possible. I have also been very fatigued and even needed two naps in one day. We are also cyst busting and treating biofilms so it might be contributing to my current symptoms... but treating Babesia has been by far the toughest on me. Wishing you all the best as you build dosage. -Wendy

We've cast the net far in hopes it will all make a difference. Like S & S said......... some believe they can cure with just antibiotics, just diet, just minerals, just herbals, just detox, just the right cranial adjustments, just the right internal PH balance, just treating viruses, just treating mold, etc. In our experience its been little bit everything and not one thing has been the complete answer. Healing takes time. Its a balancing act of what feels appropriate, what is doable, expense, Dr.'s, how your child is impacted (infections, viruses, mold, food allergies, environmental toxin) and what is working. We have found comfort in the integrative LLMD approach and their willingness to address every aspect of the immune dysfunction. I recommend reading the book 'Insights To Lyme Treatment' to understand the different approaches to treating and to help you determine what suits your situation. I read it when our family was first diagnosed and it helped direct us to a good Dr. I recently reread the book after 16 months of treating and so much more resonated with me..... my knowledge of the illness has grown along with our experience of treating. Good luck. A specific diet has been helpful but not the complete answer for us.

As you know... we have fairly definitive results for LD with positive urine PCR, positive Babesia PCR, positive Bartonella PCR, positive for several viruses, no strep titers in the younger two children and positive treatment response. Our CAM Kinase II results were the following. Older DS: 126, He was 11 days post a 5 day steroid burst which could have impacted results. He had a primary TIC presentation with mild OCD at sudden on-set. Anti-tublin was elevated to high side normal, everything else normal. Had 3 hdIVIGs Younger DS: 148, He had OCD, rage behavior, minor TICs but lacked sudden on-set, predominate lupus like rashes. One of his anti-neuronals was top end of normal range which was a noted trend for PANDAS by Madeleine, everything else normal. Had 1 hdIVIG at 5 1/2 months old for what was thought to be Kawasaki Disease also consider a possible auto-immune disease. He also had other markers that pointed to chronic infection/viruses of low WBC, low RBC, high Lymphocytes, low IgG 1 and 3s, no strep pneumo titers, etc. Younger DD: 158, No OCD or TICs, high anxiety, underweight, sick often, predominate lupus like rashes. None of her anti-neuronals were elevated. She had other markers that pointed to chronic infection of low WBC, low RBC, high Lymphocytes, extremely low IgG 1 and 3s, no strep pneumo titers, etc. Interesting herx response... When we started cyst busting with daily tindamax our older DS broke out in a knuckle and back of the hand rash that is typical of Lupus. It hurt, it looked like he had fallen and scrapped his knuckles. I am very thankful that particular rash has passed. There is a lot of cross over symptoms with Lupus/Lyme and Lyme/PANDAS so I will be interesting to see if they will be able to decipher the CAM Kinase II results in the future. My children seem to have little bit of Lupus/Lyme/Pandas and also have a high viral component. Its hard to say concretely what the true driver of symptoms is in our children... chronic infection, auto-immune component, viruses, genetic predisposition. I have a hard time with the genetic predisposition because my children are not biologically related but were carried by me in-utero thanks to assisted reproductive technologies.

Sptcmom: Which brand of Chlorella Growth Factor and is it the liquid form.. How does it taste and what is typical dose for child? Sun is fairly expensive so any perspective would be helpful but will also ask LLMD at next appointment.

Our older DS had 3 hdIVIG two years ago for PANDAS diagnoses. We did see improvement with treatments over the course of a one year period. Six months post his last hdIVIG he had minor PANDAS symptom of a mild TIC but also had mood liability and unfortunately blood in stool. We pursued an LLMD at that point to investigate chronic infection and the cause for blood in his stool further. We did eventually find Lyme Disease as well as co-infections. Since treating for Lyme we've seen further improvements and at this time he is in full remission of PANDAS like symptoms and has not required an hdIVIG since Jan. 2010. We now see 2 different integrative LLMD and have addressed many issues well beyond just Lyme that includes vitamin/mineral deficiencies, detox'ing abilities, gut issues, viruses, etc I believe every aspect of our Lyme treatment has been equally important and necessary for advancements towards full recovery. We were hopefully that some of the time spent treating for PANDAS (one year) would have accounted for a shorter treatment timeline of Lyme Disease et al (average two years). We are now 16 month into treating for Lyme for older DS and believe we will easily hit the two year mark of treatment but hopefully off antibiotics in the next year. Due to our older son's diagnoses, we tested our younger children who also ended up positive for Lyme et al. One child had OCD and rage behavior but lacked sudden on-set, the other child had entirely different presentation of high anxiety, mood, under weight, speech issues (non verbal to slurred) and lupus like symptoms. Both children had low IgG 1s and IgG 3s. We do not feel they will require hdIVIG treatments for chronic infection and auto-immune aspect. However, I've learned never to rule out any form of treatment to get them well. Good Luck. For us, it was finding a team of Dr.'s that truly understood LD as well as all the other issues that comes along with the immune system dysfunction that 'potentially' resulted from these infections. Hopefully your LLMD can guide on the use of IVIG and if its warranted in your son's case...

For yeast you could try Garlic: a clove 2 x day. Fresh garlic is best but some pills/powders are also good.... plenty of information on line about the benefits of garlic for yeast issues. BUT I found this particular website on yeast to resonate with me. http://www.danasview.net/yeast.htm Looking at the biomedical aspect could help tremendously... I think you are on a good path but it sounds like you'll need to take it very slow based reaction to specific supplements, etc. You'll learn a lot from this forum so I encourage you to keep hanging out for all kinds of ideas that include detox, herbal remedies, homeopathy, vitamin/mineral support.

OOps double post.

Thanks for update... Great perspective and helpful perhaps to our younger DS. Edit: What are you using for the detox portion again? We've used the Bentonite, Chlorella, Captomer for older DS. The chlorella is an issue for younger DS so hoping for some additional ideas.

We are instructed to take the pills with grapefruit juice on empty stomach as well. We are doing so much that the grapefruit juice prior to eating has fallen off the list. If we have troubles getting rid of the Babesia I am sure we'll revisit the grapefruit juice.

As you know, we do periodic ART muscle testing and this particular Dr. does follow Dr. Ks protocols for the most part. We also stopped treating with Core after about 4 months for older DS and myself because we were no longer testing for it. However, our older son does test for Kaprex AI which is an anti-inflammatory and has lower levels of zinc in it. I think Susan suggestion might be worth a try or stopping for a trail period. We stopped with younger DD due to concerns of heavy metals. It is my understand that sometimes it is just too much from heavy metal dumping = inflammation. We are also experiencing some early evening hyperactivity 'silliness' in younger DS with an inability to sleep through the night. He was waking at similar time periods nightly (sometimes twice a night) and this has been going on since August along with fungal infection, starting Core and preschool nap. His obvious sign of fungal infection was a black tongue but it is not always that easy to detect. I attribute some of this behavior to the fungal infection some to potentially needing a rotation in antibiotics to treat other infections. We have been hitting the Bartonella hard for a very long time. We have an appointment with LLMD right after New Year and hope to get his perspective. As for the sleep issue we tried melatonin and we still had night waking. We tried other herbal remedies to no avail. Recently we tried 500 m.g. of L-tryptophan and within five days he was drastically improved. We are relieved.... to say the least. I have only supplemented with one Core pill a day for him and are considering stopping when the bottle is finished also. We will perhaps revisit treating KPU in the future.

Adrenal fatigue and fatigue is common with Lyme et al as a herx and a symptom. I am taking vancomycin, tindamax and mepron daily and the fatigue has returned since starting this particular combo... so, this time its resulting as a herx. I did have afternoon fatigue prior to being diagnosed. The fatigue really wipes me out 'sometimes' and when its bad I'll need a three hour nap and when its not so bad a 1/2 hour nap. I also suffer from adrenal fatigue and that is basically when you exercise or over exert, it wipes you out and you crash afterwards. For Adrenal Fatigue I take: ATP Fuel by Researched Nutritionals, Adrecor (not sure I spelled it right) and Lymphomysot shots. I can actually feel my Lymph nodes flair and the fatigue set in..... clearing the Lymphatic system really helps. Edit: Good friend also with Lyme suffers from much worse fatigue. After a weeks worth of work she is typically in bed entire weekend. She also takes similar supplements at greater doses. -Wendy

Yes, I was dumping both white and red blood cells into my urine. I had periodic urinary issues that consisted of urinary frequency to bladder infections. If you goggle excess red and white blood cells in urine it points to chronic infection or cancer. In our case, I was eventually diagnosed with Lyme Disease plus co-infections of Bartonella and Babesia. Older son was originally diagnosed with PANDAS but we eventually discovered he had similar infections and suffers from congenital Lyme Disease. Good luck, I'd keep looking for other infections beyond strep if you haven't already.

Four days on and three days off at 400 m.g. per day. One pill in morning and one pill in evening. One of our Dr.'s follows Dr. K's protocols closely and we are pulsing for reason stated in Michael's post. My older son is on the same protocol and he is approximately 57 pounds. Treating for Babesia is rough. We've been treating since July for myself and older son and only 6 weeks for younger DD. I finally feel like we are making headway for two of us. Younger DD is still in thick of herx'ing and we are only at 1/2 the prescribed dose of the Mepron and not on artemisinin yet. I will not be upping her Mepron until after the holidays. I too am taking it slow to make things a little more manageable in terms of Herx'ing. -Wendy

At PANDAS onset our older son's ASO was 244, Anti-DNase-B was 0. Several month into treating for PANDAS with antibiotics our son's ASO was 205 and Anti-DNase-B still 0. About a year ago his ASO was in normal range and Anti-DNase-B was 90. I was actually excited that he was producing anti-DNase-B. Husband's ASO hovers from 240s to 280s and Anti-DNase-B 680s to 980s. When he was treated as a strep carrier his ASO titers went to 244 and anti-DNase -B went up and seemed to stay stuck at the higher number. Now that he is being treated for Lyme we are hopeful these titers will also resolve into normal range but haven't tested him lately. Remember some of this stuff might be wrapped up in biofilm's as well releasing itself/toxins periodically and perhaps when you get to treating biofilm's along with Lyme treatment you'll have better resolution titers... At least that is my hope for DH. Here is part of a discussion on Facebook regarding strep and biofilm's: "Cohen: I start with enzymes like nattokinase and lumbrokinase, as well as other mucolytic enzymes, to get the best, broad fibrinolytic effect. Dr. Usman feels nattokinase is particularly good at degrading strep biofilms and I think that strep is a very big player in these childrens’ health. I will run strep titers and they will be extraordinarily high. And these children—and certainly some adults as well—will manifest strep as a comorbid infection that has significant implications for neurological function. They will have very OCD type tendencies, and sometimes almost psychotic outbursts. There isn’t a precise, sudden onset with obvious symptoms." http://www.facebook.com/topic.php?uid=44960753282&topic=13555 -Wendy

We have given our children Andrographis, Engystol, IMN-V by ' Beyond Balance' for high viral load of HHV6, Coxsackies, XMRV. We have had great success treating viruses too... Our children have chronic Lyme et al and their bodies had difficulties dealing with these viruses on top of everything else. The combo has definitely helped. We treated with this particular combo for about six months and restart when there is an obvious virus in the household. Prior to combo, we used high dose OLE and SyImmune Tablets for at least a year plus and it was not nearly as effective. All of us had a viral response of some type between 3 and 6 weeks after starting that included mouth sores, face sores, leg sores, etc.

I thought I'd post this video as it explains how things work on a cellular level with regards: B-12, glutathione, SAMe... Its fairly easy to understand. http://www.autismone.org/content/updates-insights-sulfur-metabolism-dr-deth

Congratulations on getting to the next phase and good luck.

WOW... wonderful job!!!!! Thank You.