rowingmom

It was suggested by our LLMD that we do a trial of Virapress, which is a bovine derived immunoglobulin protein. Because the LLMD thinks DD's infections were transferred congenitally, I generally dose myself with DD's protocols, and I do have similar reactions to the ones she has. At first I was leary of bovine immunoglobulin (potential for prions?), but gave it a trial on myself anyway. For me a low dose produced a very large inflammation reaction. The dose I took was 1/4 dose suggested for DD, and I only took it for 2 days. At the end of 2 days I was hugely fatigued and had flu-like muscle soreness. Stephen Buhner (Lyme herbalist) suggests that overstimulating the immune system with anything can cause significant die-off, and I think this is what was happening here with Virapress. I never did continue the trial, or use it on DD either. It just resulted in a massive down-turn (herx). For immune modulation/stimulation we use ColdFx (an extract of American ginseng), very low dose astragalus and cordyceps.

I noticed "gasping for breath" listed as one of your son's symptoms in your first post. This symptom of air hunger is often associated with babesia. Even though DD tested negative for babesia and had no herx reactions, and only improvement on malarone (an abx used for malarial/protozoan infections), she did develop this gasping/sighing symptom (as well as chest pressure) with high doses of cryptolepis (a broadly acting herbal antibiotic used for malarial/protozoan infections). This has been our only indication of protozoan involvement. And this is the only treatment that has truely improved her executive/cognitive function.

Hi, and welcome! To me your son's symptoms sound like a combination of lyme and bartonella. If you are now seeing an LLMD that hasn't suggested the possibility of coinfections, you need to find yet another one. Our LLMD made a clinical diagnosis of bartonella and possibly lyme based on symptoms very similar to your son's (see my signature below), and began treatment immediately. DD (Dear Daughter) tested highly positive for bartonella (which is a separate test), with only 2 IgG lyme-specific bands returning on the lyme WB - kDa 39 and kDa 34 being IND. 41 was ++. kDa 39 is lyme specific, which although present, may not be causing the majority of the symptoms you son is experiencing. We treated specifically for bartonella, and then later added treatments for babesia (which had tested negative). This brought DD the most healing. My thought is that lyme is a fairly insignificant player in all of this, and that other infections and perhaps genetic deletions (MTHFR) which reduce the body's ability to detoxify bacterial endotoxins, mold, pesticides, metals etc, can have much more of an impact. Both lyme and bartonella are highly immune suppressive. When the immune system is suppressed there is reduced or improper antibody development to infections. In this way these infections are allowed free reign and can be hard to detect through testing, especially through antibody testing. With an improperly functioning immune system, other infections like strep can also become problematic. We have found more lyme-specific bands appearing since completing abx treatment, despite the fact that DD's health has improved significantly. Our LLMD takes this as an indication of a more properly functioning immune system. Try and contact ILADS, they can give you names of properly trained LLMDs in your area. To me the fact that an LLMD doesn't test or recognize the possibility of coinfections, especially the more common ones (bartonella, babesia, ehrlichia) given a symptom list very suggestive of both lyme and bartonella - is a huge red flag. Sorry.

I would be interested in hearing your thoughts on this alternative, and if you choose to use it, what responses you see. I believe there are one or two different fermented products that can be used, and had seen mention of it on PhoenixRising a while ago. http://forums.phoenixrising.me/index.php?forums/gcmaf.10/ Because DD has been doing so well I had let my interest in this topic fall by the wayside, but obviously a probiotic drink that delivers/stimulates GcMaf would potentially be important to anyone who wants to stay healthy.

This may be a herx response, a buildup of the original toxins (produced by die-off caused by the immune system) and thus the original symptoms, caused by an inability to detox from abx produced die-off. For us both silliness and increased ticcing was an indication of toxin buildup, either from yeast or bacterial die-off. This would occur during tindamax pulses, and was in fact unresolvable during continuous tindamax - it just kept escalating, which was horrible. For this reason we switched to pulsing. With pulsing I would see these behaviours increase at the beginning of the pulse (3 days), which would start resolving on the third day and then through the "off" period. For DD, each herx response produced by consecutive pulses would lessen, until after 6 months she was no longer herxing. For us, anti-inflammatories (japanese knotweed) and in increase in our detox protocols speeded up recovery.

I found him a couple years ago researching DD's ASD-like behaviours, which started with the 15 month MMR vaccine, increased with PANDAS symptoms and have resolved with antibiotic treatment for lyme/bartonella and now herbal treatment for protozoa/viruses. GcMaf has been used by a couple of prominent lyme bloggers as well. I always found his treatments to be intriguing, GcMaf, stem cells etc - He knows it's the immune system that is being impacted in our children. I hope he has your answer.

Good for you. Start thinking outside the box. Those on the inside will be of no help.

Keep us updated on Dr Bradstreet. Is this his website, or that of a different Dr Bradstreet? http://drbradstreet.org/ If this is him, I read his blogs with interest.

From: http://vaxtruth.org/2013/09/why-all-the-measles-outbreaks/: * 70 published studies showing the link between vaccines & autism. There have only been 14 studies that disprove the link. Those 14 studies have been proven flawed. You can read about those flawed studies (HERE): http://www.fourteenstudies.org/studies.html

I just found this comprehensive link which now includes 84 studies showing that vaccination may be linked to autism spectrum disorders: http://adventuresinautism.blogspot.ca/2007/06/no-evidence-of-any-link.html

Thank you for posting this, I am looking forward to hearing the information.

Test for bartonella, babesia, ehrlichia, the usual lyme coinfections. Even if lyme is negative that doesn't rule out the coinfections.

You can't change people's minds on this. Each parent has to do what they think is best. If they make an informed decision, then that is the best one. The problem is trying to gather unbiased information, which is practically impossible. Both sides have biases. I remember signing forms before DD's HepB and vitK vaccines, but did I read them and make a decision based on what I understood, or even use gut instinct? No. I simply signed them without a second thought, believing that everything is done for the common good.

An interesting article here on how that vaccine produced "herd immunity" may be short-lived, resulting in outbreaks in immunized populations and less total coverage for related infections than herd immunity produced naturally by infection. They are talking about the whooping cough vaccine here: http://www.vaccinationcouncil.org/2011/12/20/special-report-the-vitamin-c-treatment-of-whooping-cough-suzanne-humphries-md/ Dr Maxwell Witt[1] of Keyser Permanente in California showed that pertussis runs rampant in fully vaccinated child populations. “Our data suggests that the current schedule of acellular pertussis vaccine doses is insufficient to prevent outbreaks of pertussis. We noted a markedly increased rate of disease from age 8 through 12. . . . Acellular vaccines have not been studied for clinical efficacy in north America and no studies exist on long term immunogenicity. . . .We sought to examine the factors that resulted in this peak.” Prior to vaccination, infants were less susceptible to pertussis because real “herd immunity” was in place, and mothers were passing on immunity to their infants during the vulnerable time. Since vaccination, this herd immunity has actually been abolished, and infants are now more susceptible due to their vaccinated or non-immune mothers lacking specific antibody and cellular immunity for pertussis. This can be verified in the medical literature: “Diminishing maternal immunity increases the risk of infection among the youngest age groups, who have not yet received at least two doses of the vaccine.”[3] When pertussis is left to take its normal course in the community, the supposedly vulnerable infants that the vaccinationists scream and yell about, are protected by maternal antibodies and mother’s milk until they are old enough to process the disease on their own. After vaccines were introduced, this protection was vastly reduced, because the mothers were at best, having vaccine antibodies to pass along to their infants, and that defense is neither effective nor long-lasting. The reason for the diminishing maternal immunity is that vaccinated individuals tend to have lower antibody titers long-term, and breast milk antibody (IgA) is not transferred in vaccinated mothers. As we already know, two doses and even three doses of vaccine is far from a guarantee of immunity. In fact that is the exact reason there is a new vaccine in the pipeline to add to the current FAILED pertussis vaccine schedule.. So now we are at a point where we need more and more boosters because the effects of vaccine don't last. This obviously means more adjuvants.

We started out with noticable motor ticcing. The other symptoms, as well as the development of vocal ticcing, followed later. We didn't seek any type of treatment until DD's pain/fatigue symptoms started to become unbearable because I originally thought that DD was just a ticcy, bed wetting, aspergerish, ADHD kind of kid.

I don't think much can be found on the topic of vaccination damage research. There is no financial incentive for pharmaceutical companies to do this work. It would be against their own best interests to publish negative findings (ie loss of profit), so they will selectively publish only the positive, leaving negative findings on the cutting room floor. The real problem is that pharmaceutical companies are allowed to do this type of research on their own products in the first place. Any negative results stemming from research done by unbiased researchers is quickly dismissed as fear-mongering. The immune system's of our children's generation have never been allowed to develop properly. They are vaccinated at birth and not allowed to produce any type of fever reaction (recommendations for tylenol for every pain/sniffle). So as a result any infection that our/our parent's generation was able to handle with a properly functioning immune system, ie.measles, chicken pox, may actually pose more of a threat to our children than it did to us. The whole thing is a mess. I saw with my own eyes the regression of motor ability produced by DD's MMR vaccination. I saw her lose her ability to communicate, her development of toe-walking and other ASD traits. In our case, with OT/PT they have mostly resolved, but it happened in front of my eyes when she was 16 months of age and even though my observations were dismissed by our doctor as not being caused by vaccination, I know in my heart they were real. My only regret is that I continued to trust and believe our doctor.

I would also investigate all coinfections. We treated DD for lyme/bart for 1.5 years, but would relapse within one month of abx withdrawl. In a last ditch effort our LLMD rx'ed malarone (for protozoa like babesia) even though DD had tested negative for babesia. It was then we saw the real improvement. With malarone and tindamax for 6 months we were able to wean to herbals. DD has been pretty healthy with no PANS symptoms since then.

And the Japanese encephalitis vaccination is listed as both "live" and "killed".

We have no experience with any of the PANDAS doctors, but when I discussed PANS with our ILADS-trained LLMD, she was quick to assure me that PANS symptoms would resolve with treatment for DD's lyme coinfection bartonella. They have. Properly trained LLMD's seem to recognize the fact that other infections can be responsible for brain infammation.

As I am sure everyone here knows, I am going to suggest Japanese knotweed for brain inflammation. Stephen Buhner also suggests kudzu, although we have not tried that one. For an explaination on why and how it works, Buhner's book Treating the Lyme Coinfections: mycoplasma and bartonella has a good description of Japanese knotweed, as well as the other herbs used to treat myco/bartonella. I have seen a double dose bring her out of a herx-induced flare in 20 minutes. We use it daily, and CBC/CMP tested monthly (now tri-monthly) have always been normal.

There are a couple of people posting on the HealingWell Lyme forum who have either gone to the center or used the protocol from Dr Jernigan's book and found healing for lyme/coinfections. I have seen no mention there of PANS symptoms. The book is available on the website and is very alternative (German Biological Medicine and homeopathy), but allopathic medicine is not helpful for all people, so this is one alternative. I think the big problem may be $$$.

Here is another list: http://www.patient.co.uk/doctor/vaccines-and-immunological-products Live vaccines Bacterial vaccines BCG vaccination. Typhoid vaccination (oral). Cholera vaccination (oral). Viral vaccines Measles vaccination. Mumps vaccination. Rubella vaccination. Oral polio vaccination (Sabin). Yellow fever vaccination. Varicella (chickenpox) vaccination. Rotavirus vaccination. Japanese encephalitis vaccination. Inactivated vaccines Bacterial vaccines Pertussis vaccination. Cholera vaccination (oral, combined with recombinant B subunit). Anthrax vaccination. Plague vaccination. Viral vaccines Influenza vaccination. Hepatitis A vaccination. Injectable polio vaccination (Salk). Rabies vaccination. Tick-borne encephalitis vaccination. Japanese encephalitis vaccination. Toxoids Diphtheria vaccination. Tetanus vaccination. Polysaccharide extracts of virus Haemophilus influenzae type B (Hib) vaccination. Meningococcal A and C vaccination. Pneumococcal vaccination. Typhoid vaccination. Genetically engineered Hepatitis B vaccination The immune response may be humoral (as with most bacterial vaccines) or cell-mediated (as with live vaccines, including BCG). Live attenuated vaccines produce longer-lasting immunity, similar but less than that produced by natural infection. Often one dose confers long-lasting immunity, but they are inherently less stable than killed vaccines, with the possibility of reversion to wild strain, as in polio. Some may spread, enhancing herd immunity but putting at risk the immunocompromised. Inactivated vaccines usually require a series of primary vaccinations followed by boosters. Some of these vaccines have adjuvants (for example, aluminium hydroxide, aluminium phosphate) to enhance the antibody response. There is no risk of person-to-person spread, and the vaccines are more stable.

The meningococcal and tetanus vaccines are killed vaccines. I found this posted by Royal Free Hampsted contradicting the use of live attenuated vaccinations in immunosuppressed patients. I guess we don't know if our children have immune suppression until they adversely react to a live vaccination. http://www.royalfree.nhs.uk/pip_admin/docs/vaccinations_194.pdf If your immune system is suppressed because of the medicines you are taking, you must avoid live vaccines. Immunosuppressed patients can safely receive the following vaccinations (which are not live): Polio (ONLY inactivated named-patient product from RFH pharmacy) Cholera Diptheria Haemophilius influenza (Hib) Hepatitis A Hepatitis B Mantoux test Meningococcal A Meningococcal C Rabies Tetanus Typhoid (injection) Typhoid/Hep A combination (injection) Pertussis Pneumococcal Influenza Immunosuppressed patients should not receive the following vaccines (because they are live): BCG Polio (oral) Yellow fever Typhoid (oral) MMR

Interesting. DD had a big improvement in executive function and ADD with antiviral/antiprotozoan herbs. especially cryptolepis.

Since the 1980s, S. cerevisiae has also been isolated from persons with pathogenic conditions and has been considered to be a cause of invasive fungal infections. The incidence of Saccharomyces fungemia varied from 1% in a retrospective study of 102 nosocomial cases of fungemia [18] to 3.6% among patients at French teaching hospitals [9]. Among these cases, there is a growing number of observations regarding invasive infections with S. boulardii." Nowhere in this paper does it state that all of these infections are nosocomial in origin. 1% to 3.6% incidences of nosocomial cases were found to be Sacc. fungemia in two of the papers referenced, but these were not the only papers from which data were drawn for this study. "... the clinical impact of Saccharomyces infection has been clearly assessed in an immunocompetent patient whose unique predisposing factor was the ingestion of health food containing viable yeasts [25]. The patient developed recurrent fever, malaise with nausea, and night sweats. Yeasts were isolated from bone marrow and urine specimens. The patient recovered when he stopped ingesting health food containing yeasts. The occurrence of deep-site involvement with histologic documentation also underlines the pathogenicity of such yeasts. In these cases, yeasts were most often associated with necrosis [60] and granulomatous reaction." The health food they are referring to here is actually brewer's yeast Saccharomyces cerevisiae, and not unwashed fruits and vegetables. Jensen DP,Smith DL. Fever of unknown origin secondary to brewer's yeast ingestion. Arch Intern Med 1976;136:332-3. S. boulardii was considered to be the etiologic agent in 37 cases. Among the 37 patients with presumed S. boulardii infection, 5 did not take a probiotic containing S. boulardii at the time of diagnosis. Risk factors associated with invasive Saccharomyces infections are similar to those reported elsewhere for invasive candidiasis, except for treatment with a probiotic containing S. boulardii. It is important to emphasize the role of this biotherapeutic agent, because it was responsible for 40.2% of invasive Saccharomyces infections reported in the literature. In the 5 cases in which S. boulardii was considered to be the etiologic agent, although these patients did not take a probiotic preparation, the similarity of the genotypic profile between S. boulardii isolates from patients and from probiotic preparations strongly suggested nosocomial acquisition, with catheters being a likely portal of entry because of possible contamination through hand transmission [6, 7]. So this nosocomial acquisition applies to only 5 of the 37 patients. Probiotic dosing with S boulardii appears to be responsible for the rest.