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sf_mom

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Everything posted by sf_mom

  1. 2 of our children receive IVIG every three weeks for immune deficiencies (not HD IVIG). We have seen good progress but it took about year. Their IgG Subclass 1s and IgAs are still deficient but slowly moving in the right direction. I am hopeful that your child will experience similar.... slow and steady improvement. Our third child, we are using EnteragamGam, IgG 2000 and pulsed antibiotic therapies to turn around his immune system. He too is making slow and steady progress in his IgG subclasses. It is hard to determine parasites but we often had one or two children sick during full moon every month. Babesia and Bartonella are 'technically' classified as parasites and it can be confusing to weed out those infections from other parasites if you have Lyme. A few other indications of parasites: dark circles under eyes, random night waking/nightmares during full moon, nail biting, low intestinal absorption (low Butyrate), heavy metals. Treatment: One of our best responses has been with SCRAM by Health Force. Health Force uses the same ingredients all in one pill that Hulda Clark recommends you take individually. We worked up from 1 SCRAM pill a day to 8 pills and added Oil of Oregano. http://www.drclark.net/cleanses/beginners/herbal-parasite-cleanse/parasite-chart-for-adults Other recommendations: Tape worms, rope worms.... worms in general are really, really, really hard to reach. Hence "coffee enemas, MMS enemas, rectal ozone insufflation, ozone therapy". Ozone is great for Babesia and parasites but not so great for Bartonella. Our parasite issues are rope worms and Kerri Rivera discusses the prevalence of them in some of her videos on Autism. Pharmaceutical recommendations: Alinia, Ivermectin (works well for Bartonella too). There are others.
  2. In a little bit of a hurry this morning and I don't know of any specific scientific study regarding parasites replicating during full moon cycle. However, it is nomenclature amongst our treating Dr.'s that pulsed therapies are established around full-moon cycles especially when treating for parasites. A little bit of our history: Our entire family is dealing with Lyme et al and have been treated for the last 6 years. All three of our children have gestational Lyme, are immune compromise inclusive of IgA deficiencies. Our twins who are now 8 years old are recovered from psychiatric symptoms/spectrum issues (did not have a sudden on-set) and 1 child who is now 11 years old and recovered from PANS (sudden on set at age 5). All our children were very reactive to full moon cycles on a regular basis and very responsive to anti-parasitic therapies. However, we also had a positive comprehensive stool analysis's for parasites, blood in stool and images of worms that were released from various family members when treated. We are also in the Bay Area. You might try searching parasites and/or full moon cycles in Better Health Guys website. He is extremely knowledgeable and has very dense information from many of Dr.'s that regularly treat for parasites. http://www.betterhealthguy.com Here is another good resource on parasites. http://www.parasitetesting.com/parasites.cfm
  3. Could also be an indication of the following. Perhaps a comprehensive stool would help determine yeast and bad bacteria. However, parasites are often hard to pick up in the comprehensive. "However, parasites, bad bacteria, and candida yeast overgrowth in the intestinal tract, can produce more ammonia than the body is equipped to deal with, leading to a compromised immune system". Has he been worse the last couple of days? Today is the full moon and parasites replicate during the cycle so often 3 days prior to full moon and after there might be an increase in symptoms. http://nutristart.com/ammonia-toxicity-part-2/
  4. There is all kinds of information on the internet about pregnenolone.... some good, some beware, some bad. I am always the ginny pig. Hence, you might purchase 5 m.g. sublingual for yourself and try it for a week and see if it helps you sleep better. It is very helpful to me.
  5. I am wondering if she has started her period? If so, is their an imbalance in her hormone levels. Mostly are her progesterone levels on target. Progesterone can be very calming and allow for a great nights sleep. I take Pregnenolone 10 m.g. prior to bed and sleep soundly from 10 p.m. to 6 a.m. Previously to Lyme treatment I was up every night from typically 4 a.m. to 6 a.m. Just as my alarm was going off, I was falling back to sleep. Also for me, hormone therapy was a turning point in my Lyme treatment. I am not sure if it was just hormone therapy but something worked at that time. Here is some interesting information on Pregnenolone. "Pregnenolone is also being considered as a potential treatment for schizophrenia.[1]" https://en.wikipedia.org/wiki/Pregnenolone
  6. Here is a great video on one person's success treating Lyme et al with alternative therapies. He is very relatable guy. My 11 year old son watched the video and loved it. It is a hopeful story and puts forth some very affordable suggestions.
  7. I agree regarding cycles and parasites. He might also improve greatly by treating yeast. I would definitely use whatever is recommended in the comprehensive stool for treating it. Try the Scram and work your way up to the recommended amount on bottle. If he has parasites or Babesia you should see improvement. Is he on anything other than Azithro right now?
  8. I am also wondering if you are tracking full moon cycle and increase in symptoms. Many parasites replicate during full moon. If symptoms increase 2 to 3 days prior to full moon and after I would definitely consider treating him for parasites. Parasites like tape worms, rope worms, round worms, liver flukes are very hard to test for even with comprehensive stool. The two things you mention that indicates parasites to me is constipation and strange odor. Parasites omit ammonia and the best description I have read is ''you smell like cat pee". You might check ammonia levels when he smells. Parasites also love B-12 (B-12 deficiency) and he would have very little gut absorption. Look at Butyrate levels indicated on comprehensive stool analysis for gut absorption. B-12 testing I would recommend Spectracell Testing. We currently use Scram from Health Force for parasites. Also, Babesia and Bartonella are technically parasites. You might test him via Galaxy Labs for Bartonella/Babeia when flaring. It requires three different blood draws every other day. They test for more strains verses Igenex. http://www.galaxydx.com/web/pathogen-testing/
  9. I forgot to mention that I spoke to Better Health Guy (not a Dr.) at one point about mold testing. Unfortunately like heavy metals testing, blood draws for Bartonella, vitamin/mineral testing and mold testing. Its all depends. Heavy Metals Testing: Results will depend on if body is dumping metals at time of collection (even with chelators) Bartonella Testing: Results will depend on if Bartonella is active in blood stream at time of collection. Apparently, moves in and out of blood stream every three days. Its why Galaxy Labs does three blood draws every other day when testing. Vitamin/Mineral Testing: What is found in the blood stream on a specific day is not what is getting absorbed by ones cells. Urine Testing for Mold: Will depend on what the body is dumping at time of collection. Being 23 and sick has got to be hard!!!!
  10. Yes we did Real Time Labs and it was very helpful in determining mold. Our C4a's were normal at around 1,000 (4 of us were tested) and we did not investigate mold as a result. In the summer of 2013 a 200' Monterey Pine and Heritage Oak fell onto our home structurally damaging it. When our insurance company and structural engineer went to investigate the damage, siding was pulled off the home and extension wood rot and black mold was found. It was all behind the exterior siding. The home was then tested for mold and EMIs came back at 97.4. Off the charts for black mold. We then tested everyone with Real Time Labs and we were all positive. DD had the highest mold levels our LLMD had ever seen and was positive for all three types. It is hard to say how impacted we were on daily basis prior to tree falling. After the tree fell, the smell of the home changed and we were told not to enter without face masks. The home had to eventually be demolished due to structural damage and wood rot. We are grateful for the whole incidence as all our health has improved greatly since moving (day tree fell) and detoxifying for mold. My mold levels are now normal and I have been off antibiotics for 2 years. Kids are still on pulsed therapy. All have gestational Lyme. DD was looking very autistic at one point and had learning disabilities. She is now in 3rd grade and meets all grade standard. She has come a long, long way in her recovery.
  11. In our experience the following information rings true. Lyme is extremely difficult to treat (we have been at it almost 6 years). I suspect other co-infections, toxins, metals are dragging on her immune system making it difficult for her to resolve mycoplasma. My mycoplasma titers resolve after several years of treatment for Lyme et al. You might consider seeing an integrative LLMD to take a further look at potential issues. Co-infections Organism Prevalence Babesia 8-20% * Bartonella 40-70% Ehrlichia 10-50% Borrelia 18-40% Mycoplasma 25-70% * Some Lyme doctors have estimated that the presence of Babesia infection may actually be 70% or higher based on their clinical experience. When reviewing the symptoms caused by the various coinfections, it becomes clear that there is significant overlap between the symptoms which result from co-infections and those that are caused by Borrelia itself. Though Borrelia may be the ringleader, it is critical that one not overlook the very real and almost certain reality that co-infections may be a significant part of one's current condition. In summary: • Co-infections are the RULE, not an exception. • The average child with Lyme disease has 2-5 co-infections with an average of 3. • Treatment of co-infections is required and often, they must be treated before or concurrent with the Borrelia treatment itself. • If you don't test for and treat coinfections, you are not putting yourself in a good position for healing. • Most people with chronic Lyme have 1 or more co-infections. • Co-infections require different treatments in many cases. Do not assume that you are covering them with only the Lyme treatment. • Co-infection testing is often unreliable as well and you need to repeat them over time.
  12. I did this particular test to confirm Lyme. I was positive. Because you had an indeterminate for Band 31 on original Igenex test result, your ND correctly ordered the Band 31 kDa Epitope Test. When preforming the Epitope Test, Igenex takes a closer look at your original specimen (typically doesn't require a second blood draw) and tests for the B. Burdorferi "antigen". Antigens are very different from antibodies. Antigens are like DNA of the bacteria. You can find several YouTube videos on the difference between antigens and antibodies. The Epitope Test has a very low rate of false positives. Unfortunately I do not remember the exact % anymore. Here is also blurb on confirmatory testing: "Testing accuracy or the ability to have greater sensitivity without sacrificing specificity increases in the later stages, but false-positives are still known to occur due to cross reactivity with syphilis, mononucleosis, some autoimmune diseases, and possibly periodontal disease (3, 9, 12). In addition, there is a report that in some cases, immune complexes may mask the serological response (13). Therefore, most clinicians recommend that a diagnosis of Lyme borreliosis be based on clinical signs and symptoms, with multiple laboratory tests being used only as supportive data (5, 8, 14). Assays that focus on the detection of some of the more unique antigens of B. burgdorferi may help provide additional laboratory tools to aid in the diagnosis of Lyme borreliosis." Here is another great link on cross reactivity for specific bands/antibodies. http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=15
  13. I also wanted to mention our children take 120 m.g. of zinc a day for the last three years to balance really high copper/low zinc levels. Copper levels have come way down but zinc levels are still borderline deficient. We run SpectraCell at least every six months to monitor vitamin and mineral levels. We supplement when anything comes up borderline on their result.
  14. Copper/Zinc act in opposition to each other. If zinc is deficient usually copper levels are elevated. I've posted this article before but is very insightful. Describes how low zinc/copper impact diet and appetite. I would recommend testing zinc levels via SpectraCell. Their test looks at how the white blood cells are utilizing the vitamin/minerals inter-cellularly and is not a blood serum level test. http://www.tvernonlac.com/copper-toxicity.html
  15. I will PM you. Look in upper right hand corner of screen for private messages.
  16. Mycoplasma is a common co-infection to Lyme. Mycoplasma is written about widely in Lyme world so I thought I'd include a great article from that perspective. Combination antibiotics are often used to treat and the article explains why. LLMDs are very versed at treating. It is important to watch direction of titers while treating. We have 8 year old boy/girl twins. http://www.immed.org/infectious%20disease%20reports/infectdiseasereport06.11.09update/pha_nicolson_0709_v4.07.pdf
  17. It helped our DD tremendously. She had many ASD symptoms (loss of language) and inability to thrive at 2 1/2 years old. She started Lyme et al treatment at 3 1/2 years old. She is now 8 years - 4 months. At 6/7 years old she still had difficultly connecting with peers, was very impulsive, mood liability and typically played down for her age (younger children or children who were immature for her peer group), had learning disabilities but was talking. She started monthly IVIG at 7 due to immune deficiencies subclasses 1 to 4, IGA, IGM, overall serum. She just started 3rd grade and is at standard or above standard at the beginning of the school year: writes at 4th grade level, tests in 80% for math and is reading at grade level standard for beginning of year, is musically gifted (true for many ASD kids). She is extremely social now with more friends then we can contend with. It was life changing. We tested her immune function regularly and her ongoing deficiencies got us approved and she receives treatment at home with a nurse every three weeks.
  18. I do not think it is covered by insurance (I have not filed with our insurance yet). I think each shot is about $80 and depends on how often you do them. We do one every three weeks for both my son and I.
  19. Both: I have chronic lyme and in general just feel 'better'.... like a normal person when I do the shots. I am back to my old shelf prior lyme disease. I was treated for 3 years with antibiotics and have been off antibiotics 2 years. I still do a lot of maintenance therapies to keep Lyme in check: IV Nutrients, IV Chelation, PK Protocol and LDA/LDI Shots. Our younger son has no notable symptoms and had rage behavior, OCD, sensory integration, Asperger's, heart issues, PANS. Most of his symptoms resolved with 4 years of combination antibiotic therapy. However, he too just seems better when he does the shots. Doesn't regress at all when off antibiotics. Friend's DD diagnosed PANs (Lyme et al) is off antibiotics and has seen improvement in OCD since starting LDA/LDI. Our LLMD that provides LDA/LDI has all kinds of patients with variety of improvement. He feels about 30% who receive the shots see tremendous improvement across the board even psychiatric symptoms. Hope that helps.
  20. You might also look at LDA/LDI shots for your son. Here is some information on them. One of our Dr.'s is having great success - about 30% see huge improvements. Individuals off antibiotics have greater success. My younger DS and I both do them for Lyme et al and yeast. My son in on pulsed antibiotics 10 days out of the month during full moon and only does the shots when he is not taking antibiotics. I can also put you in touch with someone who's daughter was not having great success with antibiotics for treating Lyme and is doing much better with the shots. You are welcome to PM me. I will still check him for mold as well though. http://imcwc.com/html5-blank/low-dose-allergy-lda-therapy/
  21. Couple of things: Mold issue can be internal issue: yeast/mold/fungus are all the same beast. I always feel the individual should be checked first. Mold comes from all sorts of environments even foods, etc. Real Time Labs looks at the urine and types of mold by product being dumbed into it. We had normal C4As but our DD had the highest mold levels our LLMD had ever seen. Shoemaker panel is a combination of tests that insurance should cover and Real Time Labs can be submitted to insurance but was not covered for us. The first time we did Real Time it was expensive but to retest is inexpensive so you can track improvement or detox. HLA marker are also helpful and think its included in Shoemaker. http://www.survivingmold.com/diagnosis/lab-tests When MSH is low there is typically MACRONS in nasal cavity causing congestion..... looks like chronic allergies and why I recommend swabbing his nose. My personal belief on PEX is it filters out the biofilms in the blood and why there is often relief. You can also test biofilm via Fry Labs (we tested and had a big problem with biofilms... have since retest and problem is resolved). PEX can be very helpful to those with chronic Lyme. http://onlinelibrary.wiley.com/doi/10.1002/jca.21430/abstract;jsessionid=C8E576F4D05ED9E68220F724A13CC13E.f03t03 http://frylabs.com/services-list/biofilm/ Yes, our insurance covers IVIG. All 3 of our children have immune deficiencies but only 2 receive IVIG. The other child is well recovered and we are pulsing antibiotics and trying to raise IgGs with IgG 2000 by Xymogen. It is slow going but things are improving.
  22. I have two children who have Lyme et al and receive low dose IVIG every 3 weeks for immune deficiencies. The IVIG has helped their bodies fight their known infections and brings the bugs out of hiding. Unfortunately, we've had to up their antibiotics to cover for all known infections. For example: DD is on Alinia, Sulphmeth, Azithro and Mepron daily. Its a lot but she is doing the best she ever has... DD is 64 pounds and receives 10 grams. You mention two things: Inflammation and constant allergies (I am assuming he has congestion). Those combined could easily be mold exposure and macrons. Have you checked for those issues. You can swab his nose to check for infection. Real Time Labs and Shoemaker Panel for mold. Often individuals with mold exposure do not make headway with antibiotics protocols. Bartonella will also cause global inflammation as there is vascular inflammation and will also raise C4As. Rowingmom posted a great video on it the other day that explains the process.
  23. Unbelievable. Everyone should take the time to watch this video. Thanks for posting.
  24. When you are at your Dr.'s next ask to have a comprehensive stool test done. It will give you perspective on why they might be having stomach issues; i.e: yeast overgrowth, opportunistic bacteria, absorption, etc. We use Bentonite Clay. Its tasteless but for some children they do not like the texture. You can mix with Kefir or a yogurt. Available at Whole Foods or Pharmica. https://www.pureformulas.com/great-plains-bentonite-16-fl-oz-by-yerba-prima.html Activated Charcoal will also help and it comes in pill form. https://www.pureformulas.com/activated-charcoal-100-capsules-by-integrative-therapeutics.html
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