sf_mom

Our older son is on Azithro, Noni (herb), A-Myco (herb) and XClear nasal spray for mycoplasma. I am on Azithro, Doxy, Noni (herb), A-Myco (herb) and XClear nasal spray for mycoplasma. We are also being treated for other chronic TBI infections while being treated for mycoplasma. Doxy is not indicated for children under 12. I had just a little stuffiness first thing in the morning. No other symptoms of mycoplasma, Older son used to suffer from predominately TICS, he is currently in full remission of TICs/OCD. He had a lot going on so its difficult to say which infection was causing the TICs. From our perspective, it was the perfect storm of many chronic issues. Good Luck

Amy I just want to comment that Azithro/Bactrim combo is fantastic for Bartonella and could have easily put her symptoms into full remission and taken care of the Ehrlichiosis. You might also want to recheck for Lyme to see if she now has converted results and shows positive. Sometimes that happens when the co-infections are dealt with properly the Lyme test results convert over. If you take her off antibiotics 'lower antibiotics' and she regresses in a short period of time (within 1 to 2 weeks you see creeping symptoms) it can be an indication the Bartonella is still there. Additionally, if Lyme was there originally it could easily be in cyst form and might take much, much longer to see relapsing symptoms if the Bartonella and Ehrlichiosis is gone. I've been posting about the new Lyme Culture and if you take her completely off antibiotics, its another resource for testing if symptoms re-emerge. She must be off antibiotics completely for 4 weeks to test. Good Luck.

How did he do on the Doxy? That in itself might be a clue as to 'if' he had lyme previously. Also persistent acne per our LLMD points to a detox issue... It could be a clue that you need to address methylation/detox no matter the infection. Wishing you all the best. Wendy

OOps double post

Post IVIG there are test that can be preformed that don't look at antibodies like the urine Dot Blot or PCR available via Igenex. Or the new Lyme Culture but you would have to be off antibiotics for a minimum of 4 weeks. There are also co-infection PCRs via Igenex and blood smears via Fry Labs... again none of these tests look at antibodies. Her fatigue might also be from one or more viruses. I would recommend testing for HHV6, CMV, EBV, Coxsackies 'Foot and Mouth', etc. Good Luck on Thursday.

Or the infection has persisted even after antibiotic therapies. Attached is a recently published study regarding persistent Lyme...... the article describes two experiments using a nonhuman primate model (Rhesus Macaques) that suggest that Borrelia burgdorferi can persist even if the primates are given aggressive antibiotic therapy. There is lively interchange in which Phillip Baker, former NIH head of Lyme funding engages in a discussion of this article in the comments section. Its all very insightful. http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-was-this-important-lyme-study-hidden-for-12-years.html Hopefully the new Lyme Culture test will put "some" of the persist Lyme debate to rest. It appears it will be a very effective tool when stopping antibiotics and we plan to use it with our family.

There is light... I have three children with congenital Lyme and a whole host of symptoms previously that were inclusive of aneurysms, OCD, rage behavior, severely deficient immune system and potential ASD diagnoses with just one child. Our oldest had a sudden on-set of PANDAS like symptoms after strep related illness. I have been treating the oldest for PANDAS (1 year) and Lyme (1 1/2 years) and he is currently in full remission of PANDAS like symptoms. We are currently watching for any flair's, provoking with herbals and rerunning a ton of blood work to ensure we can safely take him off antibiotics. It has been a long, exhausting battle with plenty of herx's under our belt but well worth the battle. We found a home with two integrative LLMDs that LOOKED at everything from viruses, environmental toxins, gut issues, allergies, vitamin/mineral deficiencies and infections while treating both with herbals and antibiotics. If you haven't found a Dr. that understand the PANDAS/Lyme connection yet I would highly recommend pursuing one. There is an LLMD in SoCal that many from the forum have been working with successfully. I am not sure how integrative he is but happy to pass along his information privately and individuals seeing him for their perspective. There is also Dr Tod Thoring who is in Arroyo Grande, CA. who is well respected Lyme practitioner and NP that is highly regarded by our LLMD in northern CA. I do not know of anyone currently seeing Dr. Thoring. AND, of course there is always traveling to northern CA. Our LLMD has a pediatric population of about 150 children and sees many with PANDAS like presentation. He has treated many, many, many families confronted with congenital Lyme. I am also happy to pass his information along privately. Wishing you all the best as you move forward with treatment. Wendy

Here is a good mulivitamin for those that can't take pills, its liquid, also from Kirkman. http://www.pureformulas.com/super-nuthera-with-125-mg-p5p-wo-a-d-cherry-concentrate-29-oz-by-kirkman.html In addition to multivitamin we take high doses of the following: Methyl B-12 0f 25,000 mcg. http://www.iherb.com/Bluebonnet-Nutrition-Earth-Sweet-Methylcobalamin-Vitamin-B-12-Natural-Raspberry-Flavor-5000-mcg-60-Chewable-Tablets/9996?at=0 Ester C Calcium Blend with Epicor approx 600 m.g. per day: http://www.pureformulas.com/puredefense-kids-120-vegetable-capsules-by-pure-encapsulations.html Omega 3 with DHA 5 ML: http://www.iherb.com/Nordic-Naturals-Children-s-DHA-Strawberry-Flavor-8-fl-oz-237-ml/8849?at=0

What a wonderful update. Congratulations on behalf of your son!!! I can relate to having issues with DH. DH also ARTs, Zyto Machine and has some positive blood work for various infections. His health issues are there but minor in comparison to the rest of the family. However, when he gets sick he seems to have a tougher time getting over "whatever", has had a chronic cough at night for well over a year and a few other minor symptoms. He has very few biofilms and are treating him mostly with herbals. Some antibiotics for parasites. I truly feel his issues would have developed and presented as something much different maybe 10 to 20 years from now. We are glad that we choose to address his issues. He is responding to treatment. My biggest fear was he was harboring stuff and continually giving it back to the kids. So we too are making headway with the entire family as a result of our children's diagnoses. Good luck in bringing the rest of your family to wellness over the next year or two.

Here are a couple of other potential tests: - A comprehensive stool analysis via Medametrix. Looks for yeast/fungus/parasites/inflammation/good bacteria status/enzymes. etc. in gut - Fry Labs: Biofilm Test. She could be harboring many infections in biofilms that are continually releasing toxin's causing inflammation and symptoms. http://www.frylabs.com/biofilm.php - Viral Panel: Via MDL http://www.mdlab.com/

Attached is a recently published study regarding persistent Lyme...... the article describes two experiments using a nonhuman primate model (Rhesus Macaques) that suggest that Borrelia burgdorferi can persist even if the primates are given aggressive antibiotic therapy. There is lively interchange in which Phillip Baker, former NIH head of Lyme funding, engages in a lively discussion of this article in the comments section. Its all very insightful. http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-was-this-important-lyme-study-hidden-for-12-years.html -Wendy

Although our children are being treated for multiple chronic infections of Lyme/Bartonella/Babesia/Mycoplasma/several Viruses/mineral deficiencies and not PANDAS (originally PANDAS for older DS) there have been magical moments from certain combo of antibiotics that have melted symptoms away within weeks of starting. For us, it was antibiotics that cross the BBB and really got at infection. A couple of antibiotics that made a huge difference was CeDax, Alinia, daily Tindamax (towards the end of treatment) all in combination with other antibiotics. We also had a nice adjustment in baesline for older DS when he was treated for KPU which is just supplementation for specific minerals/vitamins. LLM posted a really interesting article yesterday on how schizophrenia was treated back in the 60's with certain vitamin deficiencies. I found it particularly interesting because we similarly found certain vitamins to be very helpful like hd C 'ascorbic acid'. http://orthomed.org/home/pauling.html

Per our LLMD, supplement9ng with D can cause a herxhiemer "like" response. Never spoke to him about the actual mechanics behind response but the theories posted make sense to me.

We rotate between two LLMDs. One Dr. follows Dr. Klinghardt protocols a little more closely than the other and our Dr.'s are split on if we should be supplementing with magnesium. We originally started this journey supplementing nightly with Calm for the kids and 2,000 m.g.s of Magnesium per day for myself. It definitely helped my children sleep better. I could not tell a difference supplementing with magnesium for myself. Since we started treating biofilm's, we temporarily stopped supplementing and replaced magnesium with melatonin to help with sleep issues. One son does suffer from ongoing constipation but are addressing his regularity and stools via other supplements. Now that I have a better understanding of the topic.... I think my decision to supplement would depend on if its helping, if progress is or isn't being made with other protocols, if there is a substantial biofilm problem and what phase of treatment you are currently. In the very beginning of treatment you've got to do whatever makes an obvious difference. As they get better you begin to take away things and test to see if its no longer needed. We are in the process of rechecking many labs for our older DS as he begins to wind down on treatment. Checking for biofilms is on the list. If there isn't a continuing problem with biofilm's I would consider supplementing again if there are obvious benefits. If you read more extensively on Vitamin D you will find similar conflict of perspective. Edit: I think some of the additional supplements right out of the gate when treating Lyme/chronic infection would be what helps with methylation/detox specific to your child. Hence testing and supplementing with things like B-12, C, L-glutathione, minerals, etc can make a big difference. If I remember correctly you have a dual diagnoses that includes ASD and often methylation/detox is an issue for this particular population.

Noni: http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=33 A-Myco:http://www.forresthealth.com/A-Myco.html XClear: http://www.iherb.com/Xlear-Inc-Xclear-Xylitol-Sinus-Nasal-Spray-1-5-fl-oz-45-ml/7047?at=0 Again, if you are going to add anyone of the above do it independently of each other. Start out with 1 drop each day (Noni or A-Myco) and work up to 15 drops x 2 daily. Drops are suppose to be in water. We use juice otherwise our 4 year old twins would not drink it. A-Myco is really powerful and expensive and not sure you'll be able to purchase on-line easily. Your child will herx if there is a chronic infection of mycoplasma so be prepared for a worsen of symptoms. We've only gotten up to 8 drops of A-Myco for our twins and are holding until tolerated. If you are interested in helping your child as naturally as possible I would recommend finding a great integrative Dr. that understands the various herbs in combination with antibiotics to treat chronic infections. Some LLMDs are integrative and will be able to assist and some are not. An integrative LLMD will look at the whole picture and help you to investigate things like: heavy metals, detox, mineral and vitamin deficiencies, mold, viruses, etc. Good luck.

Noni is an herb that we purchase through Nutrametix. We slowly build drops to 15 x 2 daily. We do this under the guidance of our LLMD and start herbs in isolation to anything else (no changes in supplements or antibiotics at the same time as starting herb). The herbs (Noni and A-Myco) are as powerful as any antibiotic and can cause a herxheimer reaction 'making symptoms worse' as die off occurs. I do not think you can purchase A-Mcyo independently on-line but is especially formulated for chronic mycoplasma. Again, the use of these powerful herbs should be guided by NP, DAN or integrative LLMD that is experienced in their use for these chronic infections.

I would check for some of the contagious co-infections to LD that would be passed back and forth. Our family who suffers from LD has mycoplasma, strep (husband has consistently high titers) and various viruses inclusive EBV, HHV6, Coxsackies, XMRV.

I have 4 year old twins with congenital LD. One child had OCD, rage behavior at 2 1/2. Dr. K, "PANDAS Dr" gave this particular child a preliminary diagnoses of Aspergers/PANDAS prior to discovering he had Lyme/Bartonella/Babesia/Mycoplasma/Viruses/KPU, etc. Both of the twins had immune deficiencies in their IgG 1s, 3s, overall serum, strep pneumo titers and elevated CAM Kinase. All these deficiencies were getting worse over time as we tracked them for a period of 1 1/2 years. I actually was pursuing hdIVIG for one of the twins but Dr. K was unwilling to administer due to age and lack of sudden on-set. When we eventually made it to an LLMD and discovered chronic infections it was his position that many of these things would resolve in time with treatment inclusive of immune deficiencies without the use of hdIVIG. Our twins are now 4 1/2 years of age and everything is improving as promised even the immune deficiencies. I do not take the potential of pursuing hdIVIG off the table 'if needed' for my twins but so far it looks like it will not be necessary in their course of treatment. Our older DS originally diagnoses with PANDAS then Lyme et al did benefit from hdIVIG but its been over two years since his last treatment. I am attaching some notes from a recent Lyme conference. Dr. Ann Corson spoke at this conference and is a well respected pediatric Lyme practitioner. In the notes you see some comments on her perspective of PANDAS/Lyme/hdIVIG. http://betterhealthguy.com/joomla/blog/257-bioresource-2012-conference Wishing you all the best in getting your son well.

Our family has recently been hit up a second time with mycoplasma "that I know of". For me, there was very little indication that I had the infection other than some stuffiness first thing in morning. I also have Lyme Disease so its easy for me to harbor these infections. We also see an integrative LLMD and use a combo of antibiotics and herbs to treat the Mycoplasma. I am on Azithro/Doryx (doxy) for antibiotics, Noni/A-Myco for herbs and XClear for nasal spray to specifically treat mycoplasma. My children are on Azithro/Noni/A-Myco and XClear nasal spray. It is my understanding doxy is not indicated for children under 12. I too would recommend seeing an LLMD as they are 'typically' very versed at treating chronic mycoplasma. They will also be able to investigate further the cause of his inability to resolve the infection like viruses, other chronic infections, yeast/fungus, gut issues, etc. You might also want to check if other household members have infection and if its being passed back and forth. We too have been on antibiotics for chronic infection initially PANDAS diagnoses for 2 1/2 years. Our older son's symptoms are in full remission so we are hopeful he'll be off antibiotics within the next year. We have supported his gut in many ways while on antibiotics (tons of probiotics, ketotifen) and has never had a yeast or fungus problem as a result. You might try some XClear nasal spray available at Whole Foods or Pharmica its great at treating anything that is being harbored in nose (even strep). Within two days you should notice a lot of discharge and sneezing and then in about a week hopefully some improvement. It won't completely solve mycoplasma but it should help with whatever is in his nose.

I'm on Azithro/Doryx for antibiotics and A-Myco 'Byron White' herbal formula (might be able to find on-line working up to 30 drops x 2 day) plus XClear nasal spray (Whole Foods or Pharmica).

Recently our older son complained of headache, sore throat and stomach ache... I was worried about strep but was riding it out until I got the notice from school that the boy who sits across from him had a confirmed case. We added Omnicef to daily Azithro/Tindamax/Mepron antibiotics and all complaints resolved in 48 hours. I felt his response was fairly typical and there was no notable OCD or TICS with strep exposure and possible infection 'we did not culture him'. Most of our family was also confirmed positive again for mycoplasma this past month!! Its been a heck of a winter of BUGS but I am hopeful the hyper immune response is finally normalizing after 2 1/2 years of Lyme/Pandas treatment for older DS. I highly recommend adding XClear nasal spray at the slightest hint of a cold (often mycoplasma). I understand from LLMD mycoplasma presents itself more like cold with typical congestion or sinus issues and no fever. I had minor congestion in my sinuses (only symptom) and son had a stuff up nose. XClear has Xylitol, Saline, Grapefruit Seed in it and can be purchased at Whole Foods or Pharmica. I believe it really, really helped with both the recent strep exposure and mycoplasma....

We have 3 children with Congenital Lyme Disease. One child had a PANDAS on-set after a strep related illness at 5 1/2 years of age. Our younger twins would have both been diagnosed ASD but were placed on antibiotics at 2 1/2 years of age. Our DD had one word of 'up' and her twin brother suffered from rages and OCD prior to antibiotics. The twins are now 4 1/2 years old and meeting all their developmental markers. Older DS PANDAS symptoms are in full remission. My children are not genetically related to each other thanks to assisted reproductive technology. The twins were conceived via donor egg but carried by me in-utero. Due to our genetic mix, I happen to believe more in genetic switching due to chronic infection verses genetic predisposition. It is strange to see similarity in their disease (rashes, food allergies, immune deficiencies, at one time kissing tonsils, etc) as well as their unique symptom presentation (one was predominately TICS with minor OCD, one was OCD/rages/sensory/minor tics/heart issues, one had no language skills, high anxiety, sick often, underweight, no OCD or TICS). We were very fortunate to have found an integrative LLMD that has had great success treating autistic children for chronic infection as well as other issues that comes along with chronic state typically from birth. We are very hopeful our twins will make a full recovery.

I am so sorry to read of your recent diagnoses. Wishing you a speedy recovery and plenty of prayers directed your way.

The mouth sore seems like its the Coxsackies expressing itself. I can't remember if your still doing the hdIVIG or not. Its possible they are getting re-exposed though the blood product. Our LLMD said the filters are small but often the viruses are smaller than antibodies and therefore do not get filtered. Its a double edge sward sometimes with the hdIVIG and you should just be conscious of the potential exposure. EDIT: Or maybe its possible the viral titers are being impacted by donor antibodies? I would also consider looking into their nagalase levels to see if they are high. Here is some information from the Better Health Guy on the topic. http://betterhealthguy.com/joomla/blog/247-gcmaf

NorCal Mom posted something about rising and falling titers for Mycoplasma indicating active infection regardless if its IgG or IgM. I know her son had some fairly high titers and is responding to treatment for chronic infection. Our Dr. uses combo'd antibiotics for chronic mycoplasma of Azithro/Doxy to treat adults but Azithro alone would will still help a lot.