sf_mom

I don't know much about CD19 but was thinking maybe investigating other issues and trying other therapies to get her to next level of recovery. Have you check her amnio acids yet (Dr. Data)? Have you checked for mold (Real Time Labs Mycotoxin Urine Test)? Have you considered checking Nagalase? Have you ever done Spectracell... inner blood cell utilization of vitamin/minerals. Heavy Metals testing? Her headaches could also be from a severe magnesium deficiency (look up the link between magnesium/migraine headaches). Spectracell might give you some perspective on her magnesium levels. One of our Dr.'s gives Magnesium via IV for migraines and works every time. Remember Lyme loves the magnesium so easy to become deficient when treating aggressively. We have had great success with the following Ozone, Hydrogen Peroxide, HD IV Vitamin C which converts to Hydrogen Peroxide at higher doses and treats the bugs inner cellularly. Older son is close to symptomless and is IgG deficient inclusive of IgAs. We are not pursuing IVIG at this time due to his level of symptoms. Grass Fed, Cold Pressed, Organic Whey Protein has also been really helpful as it raises Glutatione Levels. We use Tera's Way.

My heart breaks for how sick you are...... I have met similarly sick individuals that are unresponsive to almost any intervention and feel emotionally similar. I seems like you have a wonderful support group of individuals that are similarly sick which is fantastic. It is our/my support group off forum that has also helped me through the roughest of times. I only throw out Sponaugle Wellness Center to let you know there are options and the most desperately sick individual have gotten better. I have more 'way out' there options in my back pocket if ever needed. Hoping the next few IVIGs bring relief.

Headaches across the forehead are 'typically' Bartonella. Headaches at base of the skull are 'typically' Babesia. Of course, there are other infections that can cause similar headaches. But, these two types of headaches are related to these specific infections when TBIs are involved (Tic Borne Infections). It is good to rule out all other possible triggers/issues but would also continue to explore more concrete Lyme and co-infection results based on your son's symptoms. Co-infections testing via Igenex is PCR testing (DNA testing). Again, there is antigen match for Lyme. These types of tests are not antibody testing and highly accurate when positive and would provide the kind of confidence maybe everyone needs for diagnoses. LLMDs follow the guidelines for treatment outlined by the ILADS organization. There are a lot of Dr.'s who treat Lyme but are not LLMDs and why we had concerns. Combination antibiotics are recommended when treating Lyme. One type of antibiotic is used to treat outer cell wall and one type of antibiotic is used to treat inner cell wall. For our family we found Lyme "et al". Often Lyme is not the only issue and like Mom to Alex stated: methylation, mold, detoxing abilities can be huge issues as well as Lyme. This was true for our family.

I just reread your son's symptom list. I am curious what type of headaches he has and where are they located? Where is the location of sore neck.... base of skull, shoulders, side of neck? The urinary incontinence, dark circles could be mold exposure and like some infections mold will suppress the immune response. Is it possible he was/is exposed to mold. You might want to run some preliminary teats for mold. HLA markers will tell if he has the genetic ability to detox mold and lyme properly. If he can not, I would immediately follow that test with Real Time Lab Test for mycotoxins. Edit: I think RowingMom and I are thinking along the same lines. He has a lot of symptoms of Babesia.

We did extensive testing to prove Lyme. Like your DH we wanted absolute proof and we eventually got it for some of the individuals in our family. I believe I was positive or IND for Band 18, 31, 34, and 41. We also ran the Epitope Band 31 test by Igenex, it confirms the antigen of BB not antibodies and it was positive. For our older son who was originally only positive for Band 41 via Igenex we ran the Dot Bot with provocation which is a urine test and also looks for the antigen. To provocate we started him on Alinia (cyst buster, antiparasitic, antibiotic) and collected urine on days 3, 5, 7. They found the antigen (its like finding DNA) from the die-off in his urine and it was positive. Our younger son who is a twin was PCR positive (DNA) for Bartonella, Babesia and IND for Lyme with specific bands. His twin sister came up serologically negative for everything. She has/had symptoms of Lyme and is responsive to treatment. She is immune deficient and does not have strong antibody response and why antibody testing is not that great for her. We used her twins results to help determine infections. In our case its gestational Lyme for all the kids. Others on the board have done the Lyme Culture test via Advance Labs but you would need to be off antibiotics for 4 weeks. Others on the board, move on to look for co-infections like strep, mycoplasma, chlamydia pneumonia, bartonella, babesia, viruses, etc. Ultimately, it is treatment response that is most critical minus the HERX that will help determine direction of treatment. Lyme is treated with combination antibiotics and if its helpful I would continue no matter the test results. I agree with RowingMom.... That your current Dr. NOT suggesting 'other' confirmatory testing given your son's symptoms raises some red flags. Perhaps at your next appointment suggest some of the tests listed above and see what kind of response you get. Our older son did have strep titers that resolved with treatment.

You might try calling Sponaugle Wellness Center. They are in Florida. They are an inpatient facility that looks at all issues biomedically. I have heard of some great outcomes. Watch/read some of their testimonials.... "Ricky" is a guy who was in really bad shape. I think you would be well served to be inpatient with a facility that gets what you are going through and can help from a biomedical perspective. http://sponauglewellness.com

Better Health Guy has a lot of information on Nagalese and GcMAF on his website so I thought I'd attach his treatment log and comments. http://www.betterhealthguy.com/gcmaf-log More information on GcMAF: http://www.betterhealthguy.com/gcmaf JuliaFaith: I am so tempted to move forward with the shots based on your son's and my friend's son's experience. Our older son's stamina or muscle weakness/fatigue is an issue and thought it could be of great help. Considering it for over the summer. I am hoping to know my friend's subclass results and if his have turned around we'll definitely give it a try. When my friends son had such a difficult time with treatment they cut his dose in half and he did much better.

We are debating GcMAF for our kids as well. Our families results: Older DS - 1.3, younger DS - 1.2, younger DD - 1, I am normal at - .65......... We just retested older DS to see if his numbers have dropped with most recent treatments. It should take 4 months to get back results. Bradstreet may be able to get his patient results back faster as he is very involved in GcMAF/Nagalese. My friend's son nagalese was elevated at 1.2. He herx'd intensely for the first 8 weeks of shots (even I was scared) but magically he got better. He started shots last September and was taken off antibotics two weeks ago. We will see if he can maintain his recovery and if his IgG subclasses have improved. Right now he is experiencing some fatigue so we will see. He is still doing weekly shots. My friend's nagalese is 3. She thinks she'll be on shots for 2 to 3 years. Apparently, they have run nagalese on those suffering from cancer and they are typically between 3 and 7.

A couple of things to add to the posts above. IgAs are not fully developed until around the age of 15. It is important to understand age range results when looking at your son's numbers. Our DS's IgAs are 38, 40 and are not considering IVIG at this time. Both son's are close to symptomless with those numbers. Our DD who is 6 years old has IgAs of 21 and immune deficiencies in all subclasses. Even these numbers were not that concerning to Dr. Gupta - Immunologist out of LA area. More important is the direction of the subclasses over time. We had repeat blood work on DD's subclasses over 3 years and because her numbers worsened she easily qualified for monthly IVIG treatments. She does have underlying infections inclusive of a mold issue that can suppress the immune system. It is common with Lyme to have deficiencies in your 1s and 3s. She receives 9 grams of Octagam which is a low IgA product. We did her first treatment in our LLMDs office over two days to confirm there was no allergic reaction. We now do her monthly treatments in our home by a nurse and we have an Epi Pen on hand just in case. Thought I'd include a little blurb on one of the black molds that is an issue for our family. We believe our children's exposure to the black/white mold that was behind the walls in our old home was contributing to their low IgGs/IgAs. "Aflatoxicosis is not contagious and drugs and antibiotics do little to help. Aflatoxicosis damages the liver more than any other organ. Aflatoxin mycotoxins also suppress the immune system."

All our children have gestational Lyme. DD also had language regression and would have been considered ASD at 2 1/2. She had one word of 'UP' at the time. Thankfully all those symptoms have resolved. She still 'baby talks' - I think when she flairs. She see's a neurologist and her whole right side has been impacted. Very poor eyesight that wonders, low muscle tone, reflexes, etc. on the right side. Her neurologist thinks its nerve damage. Her twin brother is the one that would be considered high function Aspergers but again a lot of his issues have resolved with treatment. As you may know, deficiencies in 1s and 3s is common with Lyme. All our children have deficiencies but DDs is the only one receiving monthly IVIG at this time. Couple of things: A friend who's a son who has PANS with Lyme, Ehrlichia and immune deficiencies has made a huge turn around with Doxycycline. I believe he is 9. Apparently the best antibiotic for Ehrlichia is doxy but often avoided with kids. You might speak to your LLMD about a treatment trail. I can also put you in touch with the mother if needed just PM me. They are not currently doing IVIG. Another thing to consider is some of the outlying infections that are common with Lyme that he has not been tested or treated for yet like Babesia or FL1953. Our LLMD refers to Lyme treatment as a game of 'Whack A Mole". You treat one infection and another one surfaces. Per one of our Dr.'s, the FL 1953/biofilms are found in almost every ASD child. However, I have spoken to several people who have tested via Fry Labs and are not positive. It is treated with Biltriside and Invermectin. In our situation, most symptoms resolves quickly when there is a regression and antibiotic rotations are made. We typically rotate every 3 to 6 months at least one antibiotic. Mold turned out to be a much bigger issue for us than thought. I highly recommend checking for mold via Real Time Labs Urine mycotoxin test and not Shoemaker panel. We have done some oral chelation for heavy metals but have put that on hold to focus on mold detoxification. We will retry with IV chelation towards the end of treatment. We were supplementing DD with zinc but it wasn't enough at 40 m.g. She has always had issues with her zinc to copper ratios. We now give her 120 m.g. of zinc per day plus copper at 8 to 1 ratio. This helped instantly. It is a Klinghardt protocol of higher dose zinc. We also nebulize glutatione with her. We track her vitamin/mineral deficiencies with SpectraCell as it is the white blood cell utilization of vitamin/minerals and not serum level. I think shacking things up with your son's protocol, investigating other infections/issues further may provide the type of improvement you are hoping. Dr. Katz from CT spoke at ILADS last year about the use of IVIG and Lyme you might look to see if you can purchase the video of his talk.

Our DD has had immune deficiencies since the age of 2 as well in all subclasses inclusive of IgA. She is now 6 years old. She is also being treated for chronic infections of Lyme et al since the age of 3 1/2 years and is currently on combination antibiotics. She receives low dose (9 grams) of IVIG monthly. There is concern that 'high dose' IVIG might over stimulate her immune system given her infections and treatment regime. She looks fantastic right now but has had problems in the past when taking her off antibiotics = symptoms resurfacing. She is diagnosed with chronic Lyme, Bartonella, Babesia, FL1953, EBV, HHV6, Coxsackies, Heavy Metals and Botoxin Issues/Mold. I am wondering if your child is on combination antibiotics and what infections were discovered for your DS other than strep? For her, huge advances were made when we addressed her zinc to copper ratios, treated her with combinations antibiotics and addressed methylation/detoxing issues. She does not have any PANS symptoms but her OCD has been minimal in the past.... she had more bi-polar, aggressions/impulsivity, mood switching. Both her brother's would be consider PANS, one with high function Asperger, one classic PANS with strep trigger.

I was taking with LLMD yesterday and said Alinia is a good cyst buster especially if cysts are in the brain.

Genova tests blood serum levels for vitamin/ minerals. SpectraCell tests how the vitamins/minerals are used inner cellularly. I have found our children's results very dramatically from the two tests and now solely depend on the SpectraCell test.

As for mold. When we moved into our home five years ago we touched every surface: painted entire interior, refinished hardwood floors, new carpets, corrected any drainage issues outside the house, checked all the wiring, new light fixtures, resurfaced all the tile, etc. It took a tree falling on our house last July to find both black mold and unidentifiable white mold behind the plaster walls and in the eaves. The tree was a 150' pine and snapped the house structurally. The house was condemned that day and now needs to come down. We were well insured, we all walked away unharmed.... it was a blessing in disguise because we found the source of mold. After the tree, we had the house environmentally tested; lead in building materials and water, air born asbestos from tree and high concentration of mold. In my opinion, I would test the individual first as the mold can come from anywhere.... even school. If your child has a genetic detoxing problem for mold, then absolutely move forward with Real Time Labs Mycotoxin Urine test. If they come up positive for mold then test the home. Once you discover mold in the home, it becomes a discloser issue if you should need to sell and it is not abated properly. Edit: We have seen improvements since moving and detoxing with cholestyramine. I am off antibiotics and only detoxing for mold and heavy metals. Any residual symptoms are very manageable for me. I am hopeful. Our older son had a chronic cough that has mostly resolved since moving. He is currently TIC and OCD free. Just an occasional cough right now but also getting over an illness. He has very minimal symptoms. We are working on detoxing mold, then will recheck nagalase (either treat or not treat), challenge again for heavy metals and if everything looks good we will wind down treatment. Unfortunately, the list above may take us a year or two to accomplish.

I truly sympathize with your situation. You do have a long journey ahead but they can and do get better. He will be forever grateful for everything you have done for him on his journey towards to recovery. I am glad you are doing the SpectraCell. It was extremely helpful to us and don't be afraid to REALLY bump the zinc if it is still low or even borderline. Again, keep the copper supplementation at 8 to 1 ratio. FYI: I agree people don't understand. One of our son's remaining symptoms is stamina. He just can't keep up with his peers at times and most recently on the Basketball court. The coach doesn't understand and yells at him to hustle even though he knows he has chronic Lyme. We try our best to give our son strategies... like stand under the net. I breaks my heart to see this occur.

It is a very rocky recovery. We are in our 4th year of treatment. About two years ago I went to a small Lyme event and they went around the room and had everyone introduce themselves and explain their history. There wasn't one individual in the room that had been treated under 8 years but me. You can imagine at that moment I realized our journey was going to be much longer than ever imagined. However, with what you are outlining.... slow progress with treatment, I would definitely investigate mold. The Real Time Labs Mycotoxin Urine test proved very valuable to our family. Shoemaker panel and C4As all looked fairly normal so we weren't that concerned about mold. When we finally did the urine test, older DS had a sky high black mold issues. Edit: We also had low zinc, copper and found the amount of supplementation wasn't enough for our family (40 m.g.) One child takes about 120 m.g. of zinc per day and 14 m.g. of copper and she is a different kid. Ratio should be 8 to 1 zinc/copper. Dr. Klinghardt will often recommend up to 250 m.g. of zinc for adults. You need to monitor the copper/zinc ratios closely and we do that with SpectraCell testing every six months.

This may sound strange but it could be a severe magnesium deficiency. I would ramp up on the magnesium until tolerable. Meaning until he gets loose stool. Our LLMD typically recommends 2,000 m.g. plus per day. Another one of our Dr.'s gives it via IV for those that suffer from migraines. She claims it works 100% the time. With all supplements ramp up slowly. Again, a test like SpectraCell will help you determine vitamin/mineral deficiencies. Like JuliaFaith and RowingMom stated is could also be the bugs. Per our Dr.'s, these bugs love to hang out on the nerve endings making them hard to treat and painful... specifically 'scalp' pain. The magnesium will feed them... keep them happy and also give him some strength to fight whatever he has. In the world of chronic infection, all these bugs including parasites get directly in the brain.... they love the fatty tissue. Something like ALINIA would be a good anti-parasitic that crosses the BBB and will also treat other chronic infections. A comprehensive stool analysis is helpful in determining if there are parasites. However, it doesn't always pick them up. Edit: Mold biotoxin's can also cause severe pain. I highly recommend the Real Time Lab test for mold in the urine.

I believe JuliaFaith see's someone who was or is associated with his clinic. You might PM her. I do know of a 28 year old woman that see Dr. K and our LLMD in Northern CA. She is very sick with continuous vertigo. Can not walk without assistance and can barely get out of bed. She has a long way to recovery. Her protocol was 3 pages long. She actually moved up there for several months and saw his nurses in between appointments with Dr. K. Then moved to CA for a while and now back up with Dr. K again. I believe there is one other person that also saw him with her son but is no longer posting to forum.

Although also expensive, I have heard great things about Sponaugle Wellness Center in FL. Their testimonies/photos are interesting. The photos show clearing of the biofilms in the blood. A little bit more traditional as they do a ton of blood work. There is one young man featured in their testimonial's that had a mold/lyme issue and was suffering from depression, anxiety, neurological plus other symptoms and seemed fairly recovered in 7 weeks. The other testimonial to read is John Branch's also impacted by mold/Lyme. I have heard of 3 people through our Dr.'s office that have gone there and two recovered and one was still having some residual pain post treatment but not on antibiotics. They all went within the last year so I do not know the long term outcome. http://sponauglewellness.com

I am in my 4th year of treatment for Lyme et al. Was highly positive for Mycoplasma. The combination of herbal remedies, combination antibiotics, immune support, detoxing with a rotation of therapies, alternative treatments and philosophies inclusive of ozone, hydrogen peroxide, EMF mitigation, Osteopathic, Homeopathic and Ayurveda medicine has brought my Mycoplasma titers within striking distance of normal. My Dr.'s are no longer concerned with the impact mycoplasma has on my immune system. I am currently off antibiotics. I do not believe any herb, combination of herbs, antibiotic, antibiotic combination, supplement or alternative treatment was independently the magic bullet to recovery. However, it was the rotation of these therapies that has brought a slow steady "saw tooth" recovery. Our children's body and myself were only able to heal so fast. I am still dealing with heavy metals (although greatly decreased), yeast/fungus/mold, IgM positive for EBV. There are some herbs specifically formulated for Mycoplasma which are very good like: Bryon White, A-Myco. http://byronwhiteformulas.com I would also recommend reading Stephen Buhner's book if you are interested in treating Mycoplasma with herbs. "Healing Lyme Disease Co-infections: Complementary and Holistic Treatments for Bartonella and Mycoplasma" http://buhnerhealinglyme.com/bookstore/

Have you tested her IgG subclasses yet? If so, was she deficient? Those with low immune function have low antibody response and why they often test negative when testing for antibodies. Our DD who had CAM Kinase of 158 was also serologically negative for everything. We started to test via other means for positive results. She is also treatment responsive to combination antibiotics and regresses when antibiotics are taken away.

Check Amino Acids via Dr.'s Data or for Vitamin/Mineral deficiencies via SpectraCell. She could be depleted in Tryptophan or something similar. Low Tryptophan can cause low Serotonin which will look like insomnia, anxiety, depression, low pain threshold, aggressive behavior, abnormal appetite or food cravings.

I think more importantly is the trend. For example, DD was deficient in 1s and 3s and over all serum levels 3 years ago which is common with Lyme. She is now deficient 'age appropriate range' in all subclasses including, IgGs, IgAs and IgMs. As a result, she qualifies easily for monthly IVIG. Thankfully, we retested subclasses about every six months and had at a minimum annual subclass test results to present to our insurance. Even with her immune deficiencies she continued to make progress with her Lyme treatment and had no IVIG treatments. However, there were/are a few remaining symptoms which we are hopeful monthly IVIG will help to bring her closer to full resolution of symptoms. She does not currently have a lot PANS symptoms but also would have been considered more ASD than PANS (brief periods of eye tic with fever, minimal OCD).

I've posted about the Vagus Nerve previously (check history) and had a great article. However, in general the Vagus Nerve can be impacted by infection. Our older DS definitely had problems and was picked up on an X-Ray when being fitted for expander. Tongue did not rest correctly in mouth. He has continued to have frequent urination. In our situation, I feel the mold/yeast had an impact. When we treat for these things his chronic cough clears and frequent urination subsides. Below is a brief explanation on how Lyme can impact the nerve. However, I do not believe Lyme is the only infectious trigger impacting the Vague Nerve. Chronic Lyme can cause inflammation of the vagus nerve, one of the longest and most complex nerves in the body. Common symptoms of this nerve impairment include: high blood pressure, shortness of breath, palpitations, vomiting, hoarseness, frequency of urination, difficulty swallowing and GI motility dysfunction. If vagal nerve impairment is ruled out, I would focus on treating the liver and gallbladder. The origin of the nausea must be assessed such as gastritis, gall stones, cholecystitis, enlarged liver and/or underlying gut infections. Nausea is often caused by congested detox pathways in the liver and consequently toxic bile in the gallbladder. I also look at dysbiosis (microbial imbalance) and intestinal permeability. My intent is to increase bile production, flush the gall bladder and improve liver detoxification. Often this treatment has to be introduced gradually as it will cause the liver to back up even more, increasing nausea. However, if the patient finds the right dosage, nausea usually begins to decrease and will disappear over time. An underlying bacterial/fungal/parasitic infection may be contributing to the problem and must be dealt with by treating the infection with natural or prescription medicines. A “Leaky Gut” with increased permeability due to infection causes the bacterial/fungal/parasitic endotoxins to be absorbed into theblood stream increasing the filtration needs of the liver. It is important to reduce this toxic load as well as support the liver and gallbladder. Often the place to begin is the gastrointestinal tract. Underlying infections create disturbances in the gut ecology and liver.

I have not had time to read the post entirely so apologize if I am repeating anything that has already been posted. I wanted to add you can test for Glutamine Levels via SpectraCell Labs. SpectraCell Labs will test inner white blood cell utilization of Glutamine.... very different than serum levels. Here is a good article. http://articles.mercola.com/sites/articles/archive/2004/05/01/glutamine.aspx Edit: Older DS serum levels via Dr. Data is normal but high based inner white blood cell utilization via SpectraCell