sf_mom

This is one of the more detailed and insightful articles on Bartonella. http://www.townsendletter.com/July2015/bartonellosis0715.html

Gasping for air is a hallmark symptom of Babesia. The fact that your son developed this symptom shortly after starting Mepron is certainly an indication of this type of infection and would discuss your son's response in detail with Dr. B. I do think lowering the dosage was the right choice to help him clear toxin's more effectively. There is plenty of information on-line that outlines initial treatment for Babesia at lower dosages to effectively handle this type of die-off. I am attaching some great symptom list for Babesia. Often only one or two symptoms are present at any given time. The big symptoms for our family were air hunger or gasping for air, night sweats (you might check your son while sleeping or his sheets just after waking), headache at base of head and shoulder fatigue, thigh pain, temperature intolerance or over heating. Babesiosis Chills Fatigue and often excessive sleepiness Night sweats often drenching and profuse Severe muscle pains, especially the large muscles of the legs (quadriceps, hamstrings, buttocks, etc) Neurological symptoms often described as "dizzy, tipsy, and spiciness," similar to a sensation of floating or of walking off the top of a mountain onto a cloud Depression Episodes of breathlessness, "air hunger" and/or cough Decreased appetite and/or nausea, perhaps vomiting Spleen and/or liver enlargement Laboratory abnormalities that may include low white blood cell count, low platelet counts, mild elevation of liver enzymes, and elevated "sed rate" Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas) Less common symptoms are joint pain (more common with Lyme and Bartonella), anxiety and/or panic attacks (more common with Bartonella), lymph gland swelling (more common with Bartonella and Lyme), non-specific "sick feeling" (also encountered with Bartonella and Lyme) Dark urine Enlarged lymph nodes Significant memory changes Struggle organizing Profound psychiatric illnesses Significant fatigue, daytime sleep urgency despite nighttime sleep Waves of generalized itching Balance problems with dizziness Severe chest wall pains Random stabbing pains Weight loss Sensitivity to light Sleep in excess of 8 ½ hours per night Sore throat with unproductive cough http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/ Another good description of Babesia like organism http://www.wayneanderson.com/pages/diseases/babesia.html

Here is one: http://sponauglewellness.com

Yes, we also have 3 kids ages 11, 8, 8. All three have immune deficiencies. Two receive monthly IVIG as a result. We had PANDAS/PANS (older DS) Aspergers (younger DS) and ASD (younger DD) diagnoses but are now considered recovered. Our most immune deficient child with prior ASD diagnoses struggles the most. Our recovered child has always had the strongest immune response of the 3.

He was 5 1/2 years old when we first started this journey and thought we were solely dealing with PANDAS. He was probably 3 years into treatment when we started with low dose oral chelation and only one year ago we started IV chelation. He just had IV chelation last week and it no longer has a negative impact. His metals are almost normal with lead only being slightly out of range. When we were seeing Dr. K in Chicago he mentioned kids that presented predominately with TICs often did not see resolution of symptoms very easily. In his words, 'TICs can be persistent'. Although we saw improvement in overall symptoms from the HD IVIGs via Dr. K and treating for PANDAS some tics remained. Unfortunately, HD IVIG was not the 'cure' we had hoped for but it did provide relief in symptoms at the time. Now, 5 years into Lyme treatment our older DS has very few symptoms. Currently, his TICs are mostly resolved. When he wakes up in the morning he appears to be 100% recovered and has no symptoms of his chronic condition. As the day wanes, I might catch a very subtle transient TIC here or there. For example: he might cough and then I see a slight neck stretch. It is something that is unnoticeable to the average person but I still see it as a lingering symptom. His only other symptoms are poor handwriting relative to age/peer group but greatly improved, some nail biting of thumb nails, occasional dark circles under his eyes. We believe some of these symptoms if not all might be from chronic yeast. Chronic yeast is a by-product of long term antibiotics and chronic infections/leaky gut. The other issue we are having with this particular child is that when we suspend or lighten up his protocol he starts to regress around six week mark. He just doesn't feel well and has mood liability/tears/fatigue (asks to be put back on antibiotics). As a result, we are pulsing treatment for shorter periods of time (one week off, three weeks on) and treating the yeast when off antibiotics. We will lengthen duration of pulse on/off antibiotics over time. We have been successful with the pulsed therapy with his younger brother who I would have consider much sicker but was never as immune compromised as this child. He has no OCD, no headaches, no joint pain, no urinary frequencies which was horrible at one time, no separation anxiety, no anxiety, no other typical Lyme symptoms, weight and height are now in 90% for age, paleness 'gray' tone to skin has resolved and can keep up athletically when he was once unable. With his recovery his intelligence has skyrocketed. I only mention this issue because it is something that is has been noted by other families and high intelligence wasn't always the case for this particular child (just average). I have met many families dealing with Chronic Lyme et al throughout our journey. My current take aways are.......... Chronic Lyme is difficult to treat, it is a MUCH longer journey than ever imagined, slow and steady wins the race, it is critical to be well informed (read, read, read), build a team of Dr.'s if needed that accept your knowledge and understanding of your child, there is no magic bullet, it is the combination of treatments that has gotten us where we are with all three of our children, don't be afraid to switch things up if something isn't working. They do get better. Yes it is the Bravo yogurt for their elevated nagalase.

When did you start the Mepron? When did his TICS increase? For us, we always saw an increase in TICs after starting a new antibiotic. It is a die off response due to the increase in toxins present in the body and the bodies inability to clear those toxins. Depending on the type of bacteria they have both exotoxins (when alive) and endotoxins (when they die). Below is a description of endoxins. The die off response is commonly referred to as a herxheimer response. Older DS's TICs were the main 'symptom' of his disease. Typically the increase in symptoms (TICs, OCD, MOOD, depression) will begin within 48 to 72 hours after starting an antibiotic or an anti-malarial like Mepron. It can sometimes take weeks to see the increase in symptoms settle. Some even need to suspend treatment or lower dosages as the Herxheimer symptoms can be intolerable due to the endoxins. Our son had three HD IVIGs shortly after sudden on-set 8 weeks apart. We did see improvement but it was not lasting. 6 months after his last HD IVIG he had blood in his stool and slight increase of symptoms. Rather than scope him we went to an LLMD. The rectal bleeding was ongoing for 7 weeks by the time we saw the Dr. He was able to stop bleeding within 48 hours by treating him with an anti-parastic antibiotic of Alinia. Shortly thereafter we realized we were dealing with much more than just strep. We have seen slow and steady improvement by treating for his chronic infections. Treating for Tick Borne Infection is not easy and I am all for any relief a specific treatment might provide like IVIG. However, do not be discourage either if a specific treatment doesn't provide the outcome you anticipated either. Endotoxin, toxic substance bound to the bacterial cell wall and released when the bacterium ruptures or disintegrates. Endotoxins consist of lipopolysaccharide and lipoprotein complexes. The proteincomponent determines its foreign (antigenic) nature; the polysaccharide component determines the antibody type that can react with the endotoxin molecule to produce an immune reaction. Endotoxins are rarely fatal, although they often cause fever.

Another good article. Pulsed therapy has really helped our children. http://www.scientificamerican.com/article/lyme-disease-may-linger-for-1-in-5-because-of-persisters/

I thought the attached article made some interesting points. https://www.lymedisease.org/tick-panic/

Low IgG Subclass 1s and 3s is typical with chronic Lyme. Our older DS is 11 and started treatment for gestational Lyme et al at 6 1/2 years old. We've done many treatments over the years that include: combination antibiotics, anti-virals, herbs, homeopathy, ozone, HBOT, IV nutrients, IV chelation, mold detoxification, GcMAF yogurt, etc. He also presented with mostly TICS. In our situation: Slow and steady has won the race. He is well recovered and most would not know he has Lyme. He does a monthly IV chelation.

Viruses and Bacteria attached themselves to metals. I saw a great documentary on how the sunken Titanic is covered with biofilms called 'Rusticals'. When some Rusticals were pulled from the ships hull and tested they found 5 different types of bacteria's encased in a hard shell of a specific bacteria. These types of bacteria don't require oxygen but were eating the metal of the ship to survive. It is thought the ship will eventually deteriorate entirely from the metal eating bacteria. I am using the above analogy so you can imagine why and how your DD might be collecting metals internally. When you pull metals you release the bugs often housed in biofilms. We do IV chelation with our older son but very slowly at lower dosages. His metals load is almost within normal range after two/three years of chelation. We view any specific treatment as a way to unload the immune system so it can rectify itself and manage immune challenges. We no longer believe any one form of treatment is a cure all. Heavy metals treatment can be really challenging for someone who is immune compromised. I would check IgG subclasses 1 to 4, IgA and IgM before attempting IV Chelation. All 3 of our children have gestational Lyme et al. All three are functioning at a high level of recovery. Original diagnoses would have been ASD (DD), Asperger's (Younger DS) and PANS (Older DS).

Are you using a daily 'natural' anti-inflammatories? Enhansa, Taurine, Maxi-Flavone are some we have used. Also when our younger son started to ramp up to a rage administering a 'strong' dose of Advil typically helped and fairly quickly. There is prescription Advil double the dose of normal Advil. Perhaps talk to your Dr. about something similar. I found the Advil to shorten the rage and intensity. For us, Advil was always used as needed..... it can be tough long term on the gut. We found the natural anti-inflammatories cut down on the need for regular Advil tremendously. If I remember correctly you are treating for TBI infections. The rages always make me think Bartonella.

It definitely seems like a herx response. Is it possible that your niece has gestational Lyme? I only had a few minor symptoms of Lyme prior to our first son's birth.... The reason I mention it, children with gestational Lyme often their bodies don't recognize the bacteria as foreign and therefore don't make antibodies. These children can be serologically negative when antibodies are tested even via Igenex. This was true for two of our children and we went to great length to do alternative testing to confirm Lyme. The Dot Blot test via Igenex looks for the antigen of Lyme (like DNA) in the urine verses antibodies and this is how we confirmed Lyme for 2 of our children. The healthiest of all our children actually makes antibodies for Lyme and was IND for Lyme, Positive for Bartonella and Positive for Babesia via antibody testing. Did they test for co-infection testing when testing for Lyme? Like our younger son, sometimes co-infections will be positive while Lyme results are negative or IND. I would keep looking for infection. All our children had high titers for 3 different stains of Coxsackies and were only helped mildly by anti-virals. Thankfully, their viral titers are now normal. You can give anti-virals ongoing. It took about 3 years for viral titers to normalize.

3 weeks post MMR booster, a strep related illness and exposure to a virus our son woke up a different child. He was five years old at the time and is now 11. He has gestational Lyme et al and we feel it was the perfect storm at 5 that triggered his PANS. Thankfully, he now maintains a level of recovery that no one would know he is dealing with chronic illness. Its been a very long haul to get him well and would not vaccinate him while his health is still tentative. Our twins had delayed MMR around 2 years old. By 2 and 1/2 years of age they both had ASD symptoms. Thankfully again due to early medical intervention all those symptoms have resolved for one child and most for the other child. They are now 8 years old and both twins have gestational Lyme et al as well. Like others I would test for titers. However, due to our experience I fall in the camp of NOT vaccinating while undergoing treatment/dealing with chronic illness. We are also very tentative about ever vaccinating even if they are healthy. Thankfully we will most likely qualify for medical exemption in CA. Other children will not be so fortunate and for that I worry.

Herx's typically start 48 to 72 hours after starting a new antibiotic. Here is some good information related herx-reaction. http://forums.prohealth.com/forums/index.php?threads/explanation-of-the-herx-reaction.154659/

I thought it important to pass along Dr. Bradstreet passed suddenly on Saturday. I know he helped many PANS/PANDAS children over the years and saddened by the news. https://www.facebook.com/RememberingDrBradstreet?notif_t=fbpage_fan_invite

They can definitely be a problem especially in those that are multi co-infected or immune compromised. An easy way to tell if you are dealing with parasites is to watch full moon cycle. Look for symptom increase 2 to 3 days prior to full moon. Parasite eggs typically hatch during this period. Here is some good information: http://www.kitchendoctor.com/parasite_infection/parasite_symptoms.php We've used various anti-parasitic throughout years. I would consider all of them helpful. We are not dealing with any detectable OCD and haven't for a while. You might try Diatomaceous Earth as a first pass.

Die-off response 'typically' starts within 48 to 72 hours of starting a new antibiotic. For us, an intense die-off period would typically last for at about two weeks. Then I would notice one symptom, sometimes something unexpected get better and intuitively knew the new antibiotic was working in the middle of some obvious symptoms that were far worse that would continued on for sometimes a couple of months. For example: When younger DS started a new combination of antibiotics for Bartonella, he started to rage almost daily. Previous to new antibiotic he would rage but it was infrequent comparatively. At some point during this initial period, I realized I could rationalize with him during these rages when I could not previously (was only able to could keep him safe from harming himself or someone else). Eventually rages were every other day, then every three days, then every week. The weekly rages lasted for almost five months. However, since then he has rarely had a rage. Its now been over two years since he has had anything close to a rage. He is the sweetest kid without any mood issues at all. In our darkest moments with this particular child we were truly worried for his future. Today, he is on a pulsed antibiotic protocol and his only symptom is nightmares/night waking as a die off response. We can predict the nights he'll be up and have nightmares based on his treatment protocol. My hope in sharing our experience is you'll learn to use your intuition and "sometimes" push through in light of the initial worsening of symptoms.

You might consider using Galaxy Diagnostics when testing for Bartonella. They actually draw blood three different days and is more sensitive of a test. http://www.galaxydx.com/web/human-health/

Her symptoms seem more like: Bartonella: Anxiety and stomach aches Babesia: Sweats and feeling faint Does she have any specific headaches, bone pain in shin or thigh? Did you test for those specific infections when doing Igenex testing. I have always found this particular symptom list helpful. http://www.drchuckcochran.com/articles/lyme-disease-and-the-coinfections/

I would do follow up testing for further confirmation. A couple of great test would be the following: Advanced Labs: http://www.advanced-lab.com/spirochete.php Band 31 kDa Epitope Test: They would not need to redraw blood if tested recently. You would only need to have LLMD order test via Igenex. Look for description of test under Lyme Disease testing - 31 KDA Epitope: http://www.igenex.com Retest via Igenex using Dot Blot test which is antigen not antibody testing. Look for description under Lyme Disease testing - Antigen test: http://www.igenex.com None of these tests are antibody tests and highly accurate when positive. These tests were very helpful in determining if Lyme was an issue for our family.

Here's why you cannot be passive about SB277. If SB277 passes, it will take effect this January, and these will be the consequences: Your child will be forced to be vaccinated and re-vaccinated with 10 vaccines, including Hepatitis B, even though that is not communicable in a school setting. And your child will be re-vaccinated for diseases s/he may still be immune to from his/her last vaccinations. Any other of the almost 300 vaccines in development can be added to that schedule at any time. Do you want your child getting a fast-tracked Ebola vaccine? An anti-obesity vaccine? If you think you might want to opt out of even one of the coming vaccines, this Bill will prevent you from doing that. If you delay even one vaccine for your child, you will be forced to homeschool If you skip one vaccine, you will be forced to homeschool If you seek a medical exemption from vaccines so your child can continue to attend public or private school, your current pediatrician is highly unlikely to do it. You will have to:Track down a doctor willing to write an exemption (there are very few) Pay for an appointment out of network ($300-500) Pay for laboratory testing to bolster your exemption Have your new doctor write and sign medical exemptions and put it on her/his letterhead Hope that the doctor you find will grant your child(ren) medical exemptions from ALL the vaccines you think they shouldn't have right now, or those you want to split up or delay Hope that the doctor you find will grant your child(ren) permanent exemptions from vaccines, not just temporary File the medical exemptions with the school and your current pediatrician And, after SB277, we are certain the state will start to crack down on medical exemptions and try to define what qualifies as a medical exemption. They may or may not allow those with current medical exemptions to be "grandfathered." After that, they will come after the adults and make laws forcing adults to have vaccines, too. Right now, there is concurrent legislation in California for health care workers and for daycare workers to have mandatory vaccines.

Here is another fabulous article by a Stanford and Harvard-trained PhD in Immunology about how ludicrous this law would be: http://thinkingmomsrevolution.com/an-open-letter-to-legislators-currently-considering-vaccine-legislation-from-tetyana-obukhanych-phd-in-immunology/

Steroids often suppress the immune response and can give a chronic infection a leg up. Hence the information you have heard regarding Lyme/steroids. I too have Lyme and all three of our children have gestational Lyme. We did do a steroid burst with older DS prior to our Lyme diagnoses for Pandas. He seemed to be slightly better while on them but then returned quickly to his prior baseline after we completed 5 day burst. I was given steroids while pregnant with twins which triggered high blood pressure and seizures. I was 36 1/2 weeks pregnant and they had to deliver the twin as a result of my bad state (I did not know I had Lyme). A good friend who has chronic Lyme as well has been using a LD steroid for adrenal fatigue for over 1 1/2 years now. Our LLMD has used steroids but only at doses that don't suppress the immune response. A single use antibiotic will not treat Lyme and probably why you are not seeing any real gains from current antibiotic of Augmentin. We have not used steroids with our children since initial 5 day burst and Lyme Diagnoses due to my personal experience and the symptoms it triggered for me. We use other natural anti-inflammatories like Enhansa or Turine.

Does your son have chronic sinus issues? You mention CT scan negative for infection. You might consider doing a nasal swab for infection plus Shoemaker Panel especially looking at MSH level. Low MSH will open door for chronic infection in sinuses. Here is some great information on Lyme and Mold and how it can drive down those levels. http://betterhealthguy.com/biotoxin-illness-conference-2011 I agree with everyone else that Lyme and co-infections should be tested as soon as possible. I great antibiotic combination as a trail would be azithro and augmentin together. Is it possible to get your Dr. to also prescribe Azithro 500 m.g. daily. You might see immediate improvement and then herx within 48 to 72 hours (worsening of symptoms) that eventually improves. It is a little test in advance of testing for Lyme and co-infections that might provide insight and be helpful until you can get to a Dr. for testing.

I did IM Bacillin. I concur with icing before and after shot. It was very helpful. Rotate shot location. If you hit any damage tissue from prior shot area it will hurt a lot. Scratch at shot location while injecting slowly. The scratching creates nerve distraction so it doesn't hurt as much. Similar to the dentist moving your cheek around while injecting novocaine. Good luck.