sf_mom

A parent researching biofilm protocols recently forwarded me this particular link. It is interesting to me how the biofilm sequesters calcium, magnesium, iron and minerals. I have always been anemic and just started KPU treatment. All my children are also being treated for KPU along with all their chronic infections. http://www.facebook.com/topic.php?uid=44960753282&topic=13555 Most recently I have had the opportunity to see some Fry Lab Blood Smears for Bartonella. It is often clear when biofilm's are present. It is one thing to understand them intellectually and another thing to actually see the bioflim among the blood cells on the results. My husband shows indications of Bartonella, has the presence of biofilm's, has high strep titers 'still' and was recently found to be positive for Chlamydia pneumoniae. He is not currently being treated with antibiotics and we are doing a few things to support his immune system that includes, daily detox, hd Probiotics, hd B-12, BEG Nasal Spray. He has had a chronic cough in the evenings only for about six months that has cleared up with the BEG spray. We are concerned about the ongoing toxins these biofilms create but have not yet made a decision on how we will move forward. He shows some exposure to Lyme but only had two linger symptoms of prostrate pain and the chronic cough. He was treated for strep carrier state last year and many of his minor symptoms resolved like frequent neck pain and ongoing acid reflux all while his strep titers continued to go up, NOT DOWN. He is healthy, healthy, healthy.... Perhaps it is the presence of the biofilms and ongoing toxin release that were/are causing the low level symptoms. -Wendy

Its funny.... I always remember the twin mom's posting to the forum because of its unique experience. I am so relived you are back, getting proper help and we are reconnecting. I still think because of the acid reflux and all your attempts to manage the problem unsuccessfully there might be 'something' else. When doing a stool samples they will check for H. Pylori, Giardia, C-Diff and Unknown parasites, etc. Safer to rule out as it could be a simple fix and another 'infection/issue' his body can not resolve on its own due to underlying Lyme. All my children present differently: DS1: Predominately TICS with sudden on-set after strep related illnesses (all other PANDAS symptoms). OCD resolved over 18 months ago. Originally PANDAS diagnoses. DS2 (Twin): Predominately OCD/Rages and no sudden on-set, Autism traits, full body rashes. He has developed minor shoulder shrug as a result of treatment that has since resolved. DD (Twin): Autism traits, low body weight, full body rashes, anxiety 'at times' and no sudden on-set. Did notice eye blinking on two occasions after fever. We have positive results for Babesia, Bartonella, Lyme, XMRV, HHV6, Coxsackies, Parasite 'resolved', Strep 'resolved'.... in our family. I have spoken to many that get converted test results after treating for some time. I am so happy you found the bartonella in the one son. Again, it is an 'indication' the other son has it was well. I am convinced you'll figure this out for both of them. -Wendy

The huffing and puffing might point toward the co-infection of Babesia and would speak to Dr. J about this particular symptom. We have one son that comes up serologically negative for everything when doing antibody testing except for ASO strep titers. Now that his ASO is in normal range he is showing some anti-DNase-B titers that are also in normal range. We only found lyme when we tested via his urine and got a DNA match. His brother is positive for Bartonella and Babesia via antibody testing. Its congenital Lyme for our family so an indication all the children are infected similarly. This particular son is doing extremely well with treatment but had a dry unproductive cough from Jan. to May after an antibiotic rotation that resolved in June. We felt we where getting close to rotating down and off antibiotics but were concerned of the possibility of him still having Babesia due to brother's diagnoses. We had him tested via ART by skilled LLMD that has successfully treated many. He came back positive for Babesia immediately and recently rotated towards treating the co-infection. It has been nothing short of a dynamic shift for him since rotation. The coughing is back with serious jags of trying to get something up and out. Anyway I sight our story because he was negative via bloodwork for Babesia. The only indication he had of Babesia was the dry unproductive cough that resulted from a herx. A dry unproductive cough can also be Bartonella. In June he was ranging in the 98% recovered range from all symptoms of LD. Lets just say....... I am grateful to every Dr. that has contributed to our son treatment as we work towards full recovery. Sometimes it is just that 1 symptom that might indicate a co-infection and would talk to your LLMD. Air hunger is very specific to Babesia. -Wendy

We had a similar experience with our 2 1/2 year old daughter. She recently turned 4 and is entering preschool in the fall with age appropriate language. I am thrilled you are seeing results from treatment!!!!!!!!!!

Terry, I am so glad you are getting proper help!!!!! It looks like you are doing a lot for his gut but you may also still want to investigate a little further as he might be helped greatly by hd B-12, enzymes or elimination diet depending on how his gut is impacted. If its a parasite on top of everything else, the problems could improve within 48 hours with right medication. Our son had blood in his stool, he did have a parasite and he did improve within 48 hours. He did have the distended belly after a year's worth of PANDAS treatments. The stool test is about 250.00 outside of insurance. A good DAN Dr. in your area could help with further investigation our perhaps your regular pediatrician would sign off on the test kit. You would need to call Metametrix for kit. Alinia was the anti-parasitic antibiotic that helped my son tremendously at the time. You can purchase bentonite clay from Iherb the cheapest http://www.iherb.com/Yerba-Prima-Great-Plains-Bentonite-Detox-16-fl-oz-473-ml/4789?at=0. Embarrassing but true, we purchase 30 bottles at time. We do very large doses of 1 cup at bedtime with older DS who is 7, two hours from last antibiotic. Again, we are working with a nutritionist that guides us with these levels. Some kids do not like the taste and will not tolerate drinking it. You can purchase pills from our nutritionist and 10 pills equals 1/2 cup of liquid bentonite. http://www.uniquehealing.com/unique-healing-store/unique-healing-body-bentonite-capsules/ I think I remember PMing with you... Thought you might be related to a friend of mine. Do I have that correct? Didn't realize you had twins!!! -Wendy

I have had nausea, stomach issues, dizziness, severe acid reflux all associated with herx's that eventually passed over time... sometimes it took a couple of months. I managed symptoms with Tums, Zantac, Advil, Bentonite Clay, etc. I have also had stomach issues directly related to specific antibiotics like doxy and needed to switch antibiotics as a result. We did stool analysis on all our kids and myself and I have a yeast problem as well with almost no digestive enzymes. Prior to Lyme Diagnoses I could not tolerate even a multi-vitamin without having an upset stomach and reflux all day. One of the main focuses for our family is to improve gut health and for that we work with a nutritionist along side our LLMD. All three of our children have LD/co-infections/immune deficiencies/gut issues along with milk, cheese, casein, egg sensitivities. We practice an elimination diet for sensitivities, hdDetox, hdProbiotics, IgG powder, Ketotifen, minerals, b-12, enzymes specific to each child issues all to help resolve the gut issues. An obvious sign of food sensitivities or gut issues is a distended belly. For some children with sensitive guts or leaky gut syndrome even the smallest amount of probiotic can cause an increase in symptoms. Similarly, my friends son had medication refusal and upset stomach associated with treatment. Once he was feeling better the stomaches and refusal of medication subsided. He is/was diagnoses with Lyme, Bartonella, Babesia and Strep. Currently the bartonella and strep is resolved. Typically the medication rotations have came along with a herx of those two symptoms that typically takes any where from 4 to 8 weeks to resolve. She begs, barrows, pleads, offers weekly rewards, threatens antibiotic shots temporarily to get the medication ingested and him feeling better. I know I did answer your question directly because it could easily be a herx, antibiotics, gut issues or all three. Some easy things to try and hopefully provide relief are children's chewable Pepto Bismol 'watermelon favor' up to eight when he is having trouble, Tums or daily Bentonite Clay... I don't believe he can take Zantac at his age. You could do some stool testing through MetaMetrix http://www.metametrix.com/ or similar testing labs if you haven't already to understand the extend of gut issues: yeast, potential parasites, enzymes, inflammation, good bacteria, etc. Like Lyme Mom suggested you could also temporarily suspend antibiotics to confirm herxheimer but sometimes the break isn't enough to always tell due to the fact that they are so sick and bacterial load is so high. I am so sorry you are going through this and I wouldn't hesitate to call Dr. J to help you sort it all out. We too have faternal boy/girl twins both with LD. They just turned 4. Good Luck, Wendy

I am also positive for Ehrlichiosis and do not have neurpsych symptoms. Ehrlishiosis is fairly easy to treat along with Lyme and considered easier to eradicate than most co-infections. My friend's son was positive for Bartonella and IND for Lyme and sees a Dr. who retests titers for the infections every three months. They aggressively treated for Bartonella and at the 3 month mark he was no longer positive but still had symptoms of Bartonella/Lyme. Their Dr. decided to rotate treatment protocol to hit the Lyme a little more directly in absence of positive Bartonella blood work. At 6 month mark he was positive again for Bartonella. Dr. then decided to hit Bartonella harder again for another 6 months. At 9 month mark he was negative for Bartonella again. The Bartonella is 'now' believed to be gone but they treated 3 months past negative results again.... so, a full year of treatment. He still has minor OCD blips 'ranges in the 90% recovered' and recently came up positive via ART for Babesia/Lyme and is now being treated for Babesia with immediate and further improvement. Blood work is still IND for Lyme and negative for Babesia. Hope their story helps to understand clinical diagnoses can be key to successful treatment. Babesia can also cause OCD symptoms. -Wendy

3 to 4 a.m. waking is a typical symptom of Lyme. It can often deplete/alter cortisol levels. It was one of my main symptoms prior to pregnancy. I thought the night waking was due to work stress, too much coffee and age! Almost every night I was up at 3:03 a.m. and would fall back asleep at around 5:00 a.m. This particular symptom lasted for almost 9 years until I was diagnosed and treated. I am happy to report I no longer suffer from night waking. Its been such a relief to get a good nights sleep. Lyme typically cycles days 28 to 34. If your child has multiple co-infections the cycles can be much harder to determine due frequency. Bartonella and Babesia (between 1 to 3 weeks). In our experience, the better my children have gotten the easier it has become to determine cycles. I always mark the introduction of a new antibiotic or major change in protocol as day 1 on my calendar. The rate of relapse off antibiotics is also an indication of how the individual is infected. For example: If an individual is taken off antibiotics prior to completely eradicating Lyme et al they could get slightly worse each month in cycles. If they are really sick and have co-infections of bartonella/babesia they could start relapsing within days of stopping antibiotic treatments. Again, this relapse rate is very specific to 'how sick' the individual is at time of stopping antibiotics and what co-infections they have. -Wendy

I was bumping the post for someone off forum who is currently seeing a well respected LLMD. This was done in effort to bring understanding to her son's recent diagnosis of Bartonella, IND Lyme and unsuccessful PANDAS treatment. Dr. Schaller is well written on the topic of lyme, bartonella and babesia.... Many LLMDs support his perspectives and some follow his guidelines. This latest incident is unfortunate and will perhaps cloud his efforts and/or reputation in the Lyme World. However, many additional Dr.'s write similar supportive information on the topic of Lyme et al. -Wendy

Bumping...

Bill, I've been waiting for an update and just thrilled to hear the news. CONGRATULATIONS!!!!! -Wendy

So sorry for your diagnoses but so happy you found some answers and are getting help. Hopefully you'll feel a ton better soon. If its also Lyme for your son he can be helped and I'm sure your Dr. agrees. I am so glad you like her. -Wendy

Ketotifen is an active ingredient in some over the counter anti-histamines. Apparently, there are some eye drops that have Ketotifen in it and can be placed in nasal cavity for similar proposes. I guess with many Autistic children their is an over production of Mast Cells in the gut and why it often prescribed for these children. Our LLMD prescribed and its compounded through Clarks Pharmacy. We've been using it for almost a year now for older DS and would like to give it a try with our younger twins to see if it makes a difference. -Wendy

I have only breezed the article but I've been thinking a lot about why some individuals are so much more sensitive to treatment and any supplement or antibiotic can cause an increase in symptoms almost immediately. One of our Dr.'s was even saying that there is so much in the environment... It is almost impossible to protect from mold (its in the food we eat), bacteria, environmental toxins and viruses when there is a compromised immune system. Anyway, last night I read this article and I've gone full circle again... Our older DS is doing so much better than our younger son and the only thing we've done differently with our older son is heavy duty non-stop detox and Ketotifen. Ketotifen is a mast cell stabilizer and helps to regenerate the mucus lining of intestinal wall so none of this stuff gets out of the gut in the first place. Minimally, the article is a good read. http://www.mold-survivor.com/leaky_gut_syndrome.html

Thanks Denise... I will PM you. -Wendy

The rate of relapse or downhill slid when switched from Azithro to IM Penicillin could be an indication of a co-infection to Lyme of Bartonella/Babesia. Typical relapse for Bartonella is less than a week. High anxiety is also 'noted' symptom of Bartonella. Low grade fevers are also a symptom of Bartonella and Babesia depending on the time of day that they are abnormal. You can test for Lyme by provoking and looking for DNA or antigens 'not antibodies' in the urine. By testing with this particular method you eliminate cross reactively of antibodies for specific bands and potential concerns over the donor antibodies via IVIG. However, you are depending on him to shed die-off into his urine. But his urinary issues point to it residing in his bladder.... Lyme loves the bladder. You can contact Igenex to get a better understanding of this testing method and you will need the guidance and support of a Dr. Additional antibiotics or herbal protocols are required to create the die off. The Bartonella and Babesia PCR (DNA match) and/or FISH (blood smear for Babesia) do not look for antibodies either. Again, Igenex can help assist with specific tests. I do believe making an appointment with an ILADS trained Dr. close to you would be invaluable for assistance with testing and potential clinical diagnoses. I've attached a decent symptom list for Bartonella. Some Signs and Symptoms of Possible Chronic Bartonella Aggression Agitation All Psychiatric disorders Bartonella Causes over 200 Body Problems and Can Harm Any Organ But Some Patients Have No Clear Symptoms Confusion and Cognitive Troubles Depression and Anxiety Dizziness Dozens of Types of Rashes Drowsiness Eye Disorders, e.g., Blurred Vision, Depth Perception, and Retinal Damage Fainting Fatigue Headaches Impulsivity Irritability Joint Pain Kidney, Bladder, and Urogenital Disorders Lumps in the Skin Memory Problems Migraines Muscle Spasms and/or Weakness Numbness or Loss of Sensation Oxygen Deprivation Panic Attacks Physically or Verbally Violent behavior Polyps in or on Major Organs Profound Sensitivity to Medications Sleep Disorders Treatment Resistant Addictions and Compulsions Tremors Upper and Lower G.I. Tract Disorders

Got it, thanks Vickie... Denise any possibility of having a Lyme testing flyer available as a hand out?

Vickie, Would you be willing to have a flyer available on how to properly test for Lyme Disease and its co-infections since its such a problem for so many of us? I could speak with our Dr. have something put together for you. -Wendy

Santi: If I remember correctly from your prior posts a while back you are local to the Bay Area. We have some wonderful Dr.'s in the area that will help you sort this all out for your son. Two of theses Dr.'s will treat with homeopathic remedies along side antibiotics. The third Dr. made the original association with the CD57, has written extensively on lyme, CD57 and inflammatory markers. We are very fortunate to have these Dr.'s so close. At this point in time and with current results... I think it is important to make an appointment with one of these Dr.'s for further evaluation and testing for co-infections. They will help to explain it all to you. Some of us know a couple of tricks to get in prior to the 4 to 5 month wait list for one of these Dr.'s. We have had wonderful results with Lyme treatment for our family and I am hopeful that your son will have success too. Lyme treatment is not an easy journey and often it takes 2 to 3 years for full recovery but they do recover. I WILL WARN YOU...... initially some individual do get worse with treatment due to die-off and it can take months to see improvement. Again, having the right Dr. is key to helping you through the process. I thought I would attach an introductory video on Lyme... It discusses briefly how devastating Lyme can be to a child. The Dr. featured is local. Good luck and happy to help. -Wendy http://www.ilads.org/lyme_disease/lyme_videos_1_d.html

I went to a dermatologist to have it looked... I thought it might be something that was pre-cancerous. I've had it for as long as I've been symptomatic for Lyme. I originally had my father-in-law who is a Dr. looked at it... he said it was skin tag and not worry about it unless it was bothering me. Well, its been bothering me so I finally made the appointment. I also have a lot of little white bumps on my legs that will sometimes open and scab over. I was paranoid of Morgellon's... Our LLMD looked at it because it sounded like Bartonella to him. Both LLMD and dermatologist agreed the little white bumps were viral. I have had them forever and they do look better. -Wendy

The L Drain is something you can purchase on-line to help drain Lymph nodes. It is a liquid and I was taking 1/2 tsp 2 x day. The shots of lymphomyosot were given to me by LLMD. They actually taught me how to administer shot so I could do them at home every other day. I can not believe the relief I have had since starting. I'd say about an 90% improvement in my swollen Lymph nodes and about an 80% in fatigue. I'd talk to your Dr. about 'anything' they recommend for Lymphatic symptom drainage. -Wendy Edit: I feel like the swollen lymph nodes were triggered by new antibiotic and anti-viral protocol. I'm showing positive for 4 different viruses. XMRV, HHV6 are on the list. I just discovered yesterday that a skin tag I have on my arm is actually a wart which is also viral. I believe my viral component is huge part of my issues with Lyme.

We have been doing a ton of detox and all different types but mostly bentonite clay for a good 1 1/2 years. I bought into the concept of detox after working with a nutritionist that recommended it and actually seeing relief for our older DS within hours after taking a cup full of bentonite clay. We kept it up as result. Mostly recently I was having difficulties with my lymph nodes constantly being swollen along my bikini lines and neck. They ached so much my neck hurt and I would often get fatigued. Swollen lymph nodes and fatigue are currently my main symptoms. Our LLMD recommended a couple of things to help: any kind of jumping exercise or horse back riding (apparently the pounding clears the proteins that cause the lymph nodes to back up) and detox specific to Lymph nodes 'L Drain' by TransFormation. The L Drain definitely helped a lot but by the end of the day my Lymph nodes would be swollen again. More recently our Dr. recommended an every other day shot of Lymphomyosot....... It has helped tremendously. My lymph nodes appear normal, don't ache or swell again until right before I'm requiring another shot and my fatigue is GREATLY improved. Trust if you are seeing marked improvements it is helping. -Wendy

Also glad to hear your son is doing so well!!!!! I too had Fibro symptoms and improved on antibiotics. I have since discovered my 'true trigger' was Lyme Disease with several co-infections/viruses. I am almost 100% recovered after 10 months of treatment for Lyme Disease. All of my children suffer from congenital Lyme Disease. One had PANDAS like on-set triggered by strep. Our younger twins had Autism traits at 2 1/2 years of age. All our children are recovering. You might investigate a little further for yourself and your son. I've attached a link on how to properly test a child that might be Autistic or have Autistic traits for Lyme Disease. http://www.lymeinducedautism.com/howtogettested.html You might also watch or purchase the documentary 'Under Our Skin'. It talks extensively on Fibro and potential misdiagnoses. http://www.underourskin.com/home-store -Wendy

I am thrilled to hear your daughter is doing so well. Congratulations on the long hard fought battle and getting her to this point. I remember your posts all too well!!!!! Not to push the Lyme thing either... but if she continues at the 85% recovery and never quite makes it back to 100% I would consider reinvestigating Lyme. It is quite possible with the IV Rocephin and all the hdIVIGs you have sent to the Lyme et all off into hiding and suppressed immune response. There any many that this has happened and not until they've been treated aggressively for Lyme with combo'd antibiotics do those blood results convert back over to highly positive. For example: a little boy originally from CT had positive Lyme results over 3 years ago. He was treated for PANDAS unsuccessfully. Last year, he had negative Lyme antibody results but positive via provocation/Dot Blot testing... Now 8 months into Lyme treatment with combo'd antibiotics he is positive for Lyme via antibody testing again plus several co-infections. For them it was a huge piece of the puzzle in their hope for recovery. Wishing you all the best on your way to 100% for DD. As such a strong advocate for PANDAS, I hope you continue to advocate for Lyme testing as well..... It is a huge problem for many of us and with proper testing on the front end it could save a lot of time and money for those individuals truly suffering from Lyme/co-infections. -Wendy

Here is what we do: We take the Chlorella every other week and alternate with Captomer by Thorne (supposedly good for mercury detox). We give 10 Chlorella pills slightly before breakfast and dinner.... while the antibiotics are slightly after breakfast and dinner. You are suppose to chew the pills a little before swallowing 'good luck' with that... our older son just swallows. Then we follow with a large dose of bentonite clay at bedtime. I understand Bentonite is also good for KPU detox. Elizabeth researched Bentonite for KPU because her son was having difficulty with Chlorella. I am not sure about charcoal pills but I suspect similar to bentonite. Hopefully Elizabeth will chime in. I believe the brand of Chlorella is important because of potential additives... We use http://www.purechlorella.com/ Be prepared... Its been rough for my younger son with an increase in all symptoms since starting. He is only on 1 Core pill per day currently. Our LLMD cautioned us against the herx and told us to back down on treatment if there was too much of a negative response. We also started a new anti-viral with him at the same time so we are not sure what specifically is making him so much worse. Older DS seems to be fine on it at 4 pills per day but we had the worst 'physical' herx to date since starting Mepron last Saturday that we are still working through. So I am not sure if it ADDED to the herx. He has been on the Core for over a month and is still in the time frame of huge herx period. We saw immediate improvement in dark circles under his eyes and chapped lips. The chapped lips returned with the start of Mepron. Younger DD is similar to older DS with response 'very little'. She is only on 1 Core pill per day. Good luck and hopefully its not too rough of a herx. I have a feeling treatment will be very helpful especially long term but still in process.. -Wendy