anonymous0121 reacted to rowingmom in Treating bartonella help
DD13 was treated with various abx for 2 years for bartonella. She weaned from abx in Apr 2013 at 80% improvement. At that point I introduced Buhner's full bartonella protocol (minus l-arginine) which kept her at 80%. Our LLMD didn't specifically treat her IND lyme, but WB bands increased during treatment - the LLMD says that is because her immune system was starting to properly recognize the infection.
Bartonella treatment resolved rage issues as well as Tourette's, ADHD and SPD.
When I started DD on herbs I started treating myself also with the same protocol/same dosages and found that I was herxing along with her. Our LLMD had previously clinically diagnosed me with the same infections so I thought I would give it a try.
My symptoms improved significantly and DD maintained her 80% improvement for 8 months. At that point I decided to switch up a little and added CSA (for babesia - for which DD was asymptomatic and tested negatively through Igenex). She immediately responded with babesia herx symptoms and was then clinically diagnosed with babesia.
Treating her asymptomatic, negative-testing babesia brought her to 98% with significant improvement in cognitive/executive function. The addition of a natural chelating protocol suggested by Julie McIntyre (cilantro and binding clay - we use DE) improved her to 99%.
If you are going to use Buhner, you need to use the whole protocol starting 1 herb at a time and at VERY LOW DOSAGES. Do not use the dosages recommended in the book, especially if your son is sensitive.
We are doing wonderfully now with the FULL bartonella protocol (minus l-arginine which can exacerbate viral infections) with CSA and redroot from the babesia protocol.
I have also added in turmeric, ginger, rhodiola, phosphatidylcholine, taurine, zinc, selenium, potassium, low dose astragalus (500mg 3x weekly), probiotics and fermented vegetables.
Every one of Buhner's herbs are included in his protocols for a reason. If you start picking and choosing the protocol will not be as effective.
If you haven't, please read his two coinfection books; bartonella and mycoplasma, and babesia and anaplasma.
anonymous0121 reacted to tj21 in appt with stanford next friday - any recommendations?
I am thinking of you - good luck w/the appt. Sorry I don't know much about the clinic, other than what I heard at the last PANDAS conference here (long wait to be seen, as you've mentioned, and mostly focused on research).
ds14 suffered hourly/clock-work rages/tics also, for a couple years (all on video tape b/c no one believed me), causing us to place him first, in-patient psych. hospital, then in an out-of-state therapeutic school. FINALLY started PANS treatment in March 2014 and his tics have almost disappeared since treatment started, but we have a lonngggg road of healing ahead of us.
Next up is probably Lyme too since I have it. And maybe gallbladder disease for ds14.
HBOT - good idea, that's on our list too.
Keep us posted re. Stanford.
anonymous0121 reacted to PowPow in CellCept - Feedback?
Does/has your child take(n) CellCept? YES
If Yes, dose: currently up to (max dose for her) 1500mg twice a day
Current Age of Child: 15
Guesstimate of how long they've suffered: August 2008
Other treatments tried: pex, IVIG, steroids (oral and IV) abx, LLMD/integrative
Were those successful? To what degree (functional/non-functional)? Pex/ steroids, yes-- moderately functional, but much better than baseline.. IVIG- very hard to tell.. LLMD/integrative care-- again, hard to tell-- seemed physicallly healthier, but no relief from symptoms, in fact it seemed to precipitate the most severe symptoms
Does your child have another AE dx? yes, AE with anti-phospholipid syndrome (specifically anti-cardiolipin antibodies)
Has the CellCept made a difference? Yes. Yes. Yes.
If yes, to what extent? She began Cellcept in July/Aug 2013. She has also received monthly IVIG/steroids since then. She goes to school every day, still with OCD and tics, but she is living life and smiles. She has missed her daily cellcept a few times in a row (due to illness, oversleeping, "forgetting" ) and when she misses her oral meds for a few days, we see an definitive increase in symtpoms.
Another thing to keep in mind. My pharmacist STRONGLY recommended that we purchase the brand name medication. She said that almost all her patients who are on cellcept use the brand name. I had not really looked into the specifically, but followed her advice. I had to get a brand specific prescription from the rheumatologist, but I am not sorry we are paying more. I would not risk anything for the success that my daughter has achieved.
Another note- she was NOT a square one when she began cellcept in July. She had IVIG/high dose steroids in Feb and had begun daily Augmentin (for the nth time!) in May. She was not completely nonfunctional when this began, but it was very tenuous and fragile, for certain. I feel that her recovery has been quite quick. I am bracing my self, as I have realized that every spring since her onset Aug 2008, has been a severe spiral. I am hoping, praying that she makes it through this spring. Last Feb, she attempted suicide, would not speak, destroyed many, many things in the home, was incontient of urine, paralyzed by OCD and paranoia, and delusional, . This Feburary, thanks to the perservance of Dr L and her current treating docs, she plans to be playing basketball for her high school and doing homework!
Hoping she NEVER has to go through that again. I have PTSD from it, I am sure, just as the bystander.
anonymous0121 reacted to sf_mom in Helpful Threads for Lyme & related Diseases
Decent Symptom List For LYME/Co-infections.
LYME DISEASE AND THE CO-INFECTIONS
Lyme disease is a major health problem in the United States. Since the infective agent, the bacteria known as Borrelia burgdorferi, is so difficult to locate and diagnose using present-day blood tests, it often goes undiagnosed and untreated or improperly treated. Even with practitioners who consider themselves Lyme-Literate Medical Doctors (LLMDs) or Lyme-Aware Medical Practitioners (LAMPs) diagnosing this infection can be very frustrating for several reasons. There are several great books that address the controversy, the politics, the diagnosis, and the treatment, and I will refer you to them for further information. However, two of the most important reasons that proper diagnosis is so difficult is that Borrelia burgdorferi can change its shape and form as a way of protecting itself. These protective forms rarely, if ever, show up in the blood and hide away in other tissues that would require biopsies to identify them. And, second the blood labs used to identify our immune response to these organisms have not been completely refined and, at best are 70% effective and, at worst, only 30% effective.
The majority of healthcare providers, not being Lyme knowledgeable, busy themselves treating the symptoms or possibly even treating the wrong disease. Lyme disease is also known as "The Great Imposter" or "The Great Imitator." It can mimic such conditions as chronic fatigue syndrome, fibromyalgia, autoimmune arthritis, multiple sclerosis, amyotrophic lateral sclerosis (Lou Gehrig's disease), schizophrenia, bipolar disorder, and many different heart and vascular conditions. From the practitioners point of view, it makes it even more difficult to properly diagnose and treat when Lyme disease is very often accompanied by any a number of, just as bad or worse, organisms such as Babesia, Bartonella, Ehrlichia, Cytomegalovirus, Epstein Bar Virus, Herpes Simplex I and II, Human Herpes Virus 6 (HHV 6), Rickettsia, and Mycoplasma.
I have listed below some of the symptoms related to chronic disseminated Lyme disease (Borreliosis), Babesiosis, and Bartonellosis. You will notice that there are many symptoms that overlap with these three infections.
Please circle (O) the bullet if you are presently experiencing this symptom and place and (X) at the bullet if you've experienced this symptom in the past. Next to the (O) or the (X), please rate the symptom on a scale from 1 - 10. Very rarely or few symptoms would be a 1 while often and/or severe would be a 10.
Arthritis-like joint pain and swelling (often migrating or moving from joint to joint) "Brain fog" with poor concentration, focus, and/or attention Disrupted sleep cycles, resulting in poor quality sleep, too little sleep, difficulty staying asleep, or early awakening Back pain Light sensitivity and/or blurred vision, increased eye floaters Ear symptoms (hearing loss, ringing in the ears, or sensitivity to noise or certain frequencies) Chronic and/or severe fatigue with minimal stamina Facial paralysis (especially Bell's Palsy) Chronic pain and tender points throughout the muscles of the body Walking and balance problems Headaches Impaired muscle coordination Impaired reflexes Memory loss (especially short-term memory) Muscle weakness Nerve symptoms (numbness, tingling, burning, vibrating, or shooting) Night sweats, clamminess, unexplained fevers, flushing Unexplained weight change (loss or gain) Unexplained hair loss Swollen and/or tender glands Sore throat Testicular / pelvic pain Unexplained menstrual irregularities Unexplained breast pain / milk production Sexual dysfunction and loss of libido Upset stomach with nausea and possibly pain Changes in bowel function (constipation or diarrhea) Muscle twitching of the face or other muscles Increased motion sickness, vertigo, or poor balance Tremors Confusion, difficulty in thinking Difficulty concentrating / reading Disorientation (getting lost, going to the wrong places) Speech difficulties, vocalization problems, problems writing, word block Exaggerated symptoms or worse hangover from alcohol
Over 50% of those with chronic Lyme disease exhibit mental and emotional symptoms including:
Behavioral disorders including impulsive acts of aggression and violence Extreme mood swings between depression and mania Chronic depression Dementia Eating disorders Hallucinations Mood swings Panic attacks Extreme fears or phobias Schizophrenia Personality disorders (radical change in someone's personality) Thoughts of suicide Irritability
A large percentage of individuals with Lyme infections also exhibit heart and vascular symptoms including:
Shortness of breath with minimal exertion Gasping for air Irregular heart rhythms (occasional irregular beats or beating too fast known as tachycardia) Chest pains / soreness in the ribs Enlarged heart Palpitations Fainting sensations Non-productive cough History of heart murmur or valve prolapse Two major clues that Lyme is the cause of the above symptoms are: the progressive worsening over time of a multi-system pattern of symptoms, and the tendency for these symptoms to wax and wane in a cyclical fashion. That is, every 3 to 6 weeks, it seems that the symptoms get worse for a few days, after which they resume the previous pattern.
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
Fatigue (often with agitation, unlike Lyme disease which is more associated with exhaustion) Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus" Headaches, especially frontal (often confused with sinus) or top of head Eye symptoms are common and include blurred-vision episodes, red eyes, dry eyes, depth perception problems, retinal problems, and light sensitivity Ringling in the ears and sometimes hearing problems (decreased or even increased sensitivity known as hyperacusis) Sore throats that are recurring Swollen glands, especially neck and under arms Anxiety, panic, or worry attacks; others perceive as "very anxious" Agitation, irritability, rage, impulsivity, or aggression Episodes of confusion and disorientation that are usually transient (and very scary), often can be seizure-like in nature Poor sleep (especially difficulty falling asleep), poor quality sleep Joint pain and stiffness (often symmetrical, as opposed to Lyme which is often unsymmetrical and often migratory) Muscle pains, especially in the calves; may be twitching and cramping also Foot pain in the morning involving the heels or soles of the feet (sometimes diagnosed as plantar fasciitis) Nerve irritation symptoms that can be described as burning, vibrating, numb, shooting, tingling, and so forth Tremors and/or muscle twitching Heart palpitations and strange chest pains Episodes of breathlessness Strange rashes recurring on the body, red stretch marks, peculiar tender lumps and nodules along the sides of legs or arms, and spider veins Gut symptoms, especially acid reflux Shin bone pain and tenderness Fainting Bladder pain, irritation, infections Genital disorders Obesity and body swelling The list of Borreliosis, Bartonellosis, and Babesiosis symptoms were borrowed from Joseph Burrascano, M.D. (Checklist for Lyme Disease 2008), Kenneth Singleton, M.D., M.P.H. (The Lyme Disease Solution 2008), and James Schaller, M.D. (Bartonella: Diagnosis and Treatment 2008 and The Diagnosis and Treatment of Babesia 2006)
anonymous0121 reacted to sf_mom in Breaking the Rage Cycle?
I am not sure if I mentioned this previously but we have at least 5 Dr.'s in the Bay Area that treat PANDAS/PANS. 4 are extremely versed at looking for all of the potential chronic infections (definitely the rage component), understand mold, environmental toxins, heavy metals, detox, methylation, genetic testing, implications of yeast/gut issues, etc. 4 of them are considered integrative and 2 of those Dr.'s will prescribe hdIVIG if needed. The other Dr. treats similar to Dr. B in CT but also has an interest in the inflammation aspect for PANDAS/PANS.
I am sure you have a comfort level for Dr. B but it is a long flight to CT. If you ever need a second opinion or would like to save the time, energy and money from travel back east please feel free to PM. I can also connect you with others seeing these particular Dr.'s.
anonymous0121 reacted to SSS in Breaking the Rage Cycle?
I know we are talking about treating the infections on this thread, but what led me to
pay cash for 2 high dose IVIG's, administered 6 weeks apart,
was the very real component of 'PANS'
that was the
'Exorcist Rage Episodes'
Before our IVIG's,
it was this issue that scared me senseless.
If I was home alone when these rage episodes occurred, my dd was out of her body and mind,
and I came very close to calling an ambulance more than once. I instead called my 77 year old father-in-law who lives retired in the same town to rush over ASAP.
At the same time, my dd would suddenly start walking lines in a busy parking lot, then take off running through traffic.
I would catch her, man handle her somehow into a car seat, her physically fighting me, just waiting for police to show up that someone was sure to have called.
After this happened twice, I refused to leave the house with her without another adult.
Shortly after, we did HD-IVIG.
I was desperate to somehow re-set her immune system to stop this. (We had high PANDAS range Cunningham results)
I won't go into detail about what IVIG's did and didn't 'fix', or the fact that what some things were 'fixed'
wore off when the IVIG wore off (6 weeks later)
BUT, after our IVIG's, I never had a rage episode with her again where I was about to call an ambulance, because she was so far gone I thought brain damage might be occurring, or I was scared for our safety. Nor did I ever have her run off from me again, her having left her senses.
anonymous0121 reacted to trintiybella in Bartonella/lyme "without" Inflammation?
Is is possible that my child can have lyme/bartonella, and have no brain inflammation. She reacts very poorly and gets worse with motrin and also turns into satan with steroids. Both of these are for brain inflammation, so if she does so horribly with them and they don't help...wouldn't that mean there is no inflammation? Thanks!
anonymous0121 reacted to rowingmom in Really Confused
And the antibiotic that finally gives some resolution is a clue as well. If strep abx aren't working after some time, look for different infection(s) that may be causing the PANS/PANDAS reaction. DD tested positive for bartonella, but treatment for cysts/protozoa is what gave her lasting improvement. That along with MTHFR support.
Medicine hasn't gotten to the point yet where all infections can be properly diagnosed. Doctors are only now figuring out that gut bacteria are a very important piece of the immune system.
Medicine isn't as advanced as we would like to think it is. The key is to find resolution not the exact cause, which could be any combination of genetics, gut health, immune status, toxic load (pesticides, heavy metals, EMFs) and infection.