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Rachel

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Everything posted by Rachel

  1. My ds doctor's appointment went very well this last Tuesday. Our cardiologist is going to start a more aggressive treatment plan. Testing from the Pandas study has indicated some heart antibodies are present. However, my son has not been diagnosied with PANS/PANDAS because of how his illness progressed. He has been put into another study at OU for POTS patients. This study is also looking at specific heart antibodies and receptors. The cardiologist has given my son another diagnosis and his POTS is the secondary diagnosis. This new diagnosis is a tongue twister it starts out as autoimmune anti-neuroantibodies ______ _______ ________ _________. I will be getting a letter for my son's school and it will be written down. So I will be able to tell you the diagnosis name eventully. Basically our doctor thinks the Mycoplasma has caused the brain antibodies. My son will be going for labs on Monday to see if Mycoplasma levels are going down or staying the same. He is also checking magnesium, iron, and other electorlite levels. The only improvement we tell is that the antibiotic is keeping his blood pressures up. Which is huge, since this stuff is affecting his heart and blood pressure. If his mycolplasma levels are not going down, my son will be change to another antibodic. Doxycline was discussed as a possibility. My son will be having lab work about every 3 months to check for the levels. I am really glad that our cardiologist is going to do the treatment because of heart and blood pressue problems. The cardiologist is also ok with us trying Burhner's herbs for inflammation. Since other medications have not helped in the past. However, we must start slow and he will moniter my son with EKGs after he has been on a new herb for one week. Our doctor also wants to start my ds on an immune supressing medication. IVIG was discussed but he is afraid it will make my son's current symptom's worse ( headache, scalp pain, and vocal tics). He really does not want to make these symptoms worse and wants to leave IVIG as last resort. He is trying to find something that is antiflammatory that will not increase these symptoms. Any suggestions on what to look at? I know our doctor is collaborating with other doctors. However, I wondered if anyone had found an immune supressing medication that kept these other bad symptoms from becoming worse? Last but not least, for those that are treating the Mycoplasma, Have you gotten rid of it yet? If so, How? Feel free to pm. I have went back and read several old post and have saved them under my favorites. It sounds lke this is going to be a very long haul. I'm hoping with the herbs and antibiotics that we can speed up this healing process. I am also waiting on my son's 23 and me results. I have also save all the old post and will share the results. Overall, we had a really good doctor's appointment and I finally feel like we are headed in the right direction for treatment.
  2. I have not received my Buhner Book on Lyme and coinfections yet through the mail. This question might be answered in there but I really need to know what band might specifically indicate mycoplasma infection from Lyme. I will be seeing the cardiologist tomorrow and want to approach him about running some more test. I am reading more on Lyme and its coinfections. I am wondering if my son's mycoplasma P antibody levels are from a tick bite or from the virus itself. There must be a way to tell the difference. Any help would be appreciated. I think these test can be run through IGNEX or Stoneybrook Labs.
  3. Hang in there. It's hard to find doctors that will work with you. I am waiting on my son,s 23 and me test results. Have you tried any of the Gummie Supplements? I know they may have a sweetner in them but maybe you could do some supplementing that way. Or maybe mix some things into a fruit smoothie
  4. Thanks Cara. I will see our doctor on Tuesday and ask him also. I was just wondering if anyone else has been in this situation with their ds or dd. Both of us really do need answers to this question. I do not have any plans to update vaccines until I get an answer.
  5. Before having IVIG, is it necessary that your child have all of their vaccinations? I know my son has not had his Hep B yet. I am going to take his shot card into the health department to find out if he is missing anymore. However, I would like to know what your doctors are recommending about vaccinations. I asked our last immunologist and he said to hold off on them but did not explain why. I know this can be a very controversial topic but I really need some advice if you feel comfortable sharing.Or you can PM if you like. If you have some research to pass along, I will gladly read it. I just don't want to get my son in trouble with the IVIG. If I need to hold off on doing the IVIG because of not having current vaccinations. I do understand that live virus vaccinations should not be given to a child with a comprimised immune system. Any advice or research articles would be appreciated. Thanks in advance.
  6. Thank you so much for your information. Our cardiologist will start with a low dosage if we agree to it. I will be visiting with him about this next Tuesday. My biggest fear is that it will make my son's symptom's worse (headache, scalp pain, and tremors). However, we know that we are dealing with some type of immune issue since the antibodies are present. Just really scare of making things worse for my son. I know many of you have been there and have had good results with IVIG. I do have another question about IVIG and something else. I will make a seperate post for it. I'm sure some of you have had some experience with this next issue that I will post.
  7. What causes low IgA? My son has had his checked several times. He is not deficient. His last test showed he was at 56 and the range is 71-263. I've also been told when someone has low IgA that IVIG may not be an option. What is the reasoning behind this. I've tried to find research but I'm coming up empty handed. In all his testing, his IgA has never shown to be in a normal range. My son's cardiologist is considering doing a low dosage of IVIG to see if it would help his low blood pressure and get rid of the antibodies. However, he has held off on this treatment because the Bixan seems to be helping with the low blood pressure but not the rest of his symptoms.. However, I'm wondering how we are going to get rid of the antibodies in the brain. Is IVIG and PEX the only way to do this when your kid has been sick for over 3 years? Is a low dosage of IVIG better to start with when your kid has a low IgA? I am getting ready to go see the cardiologist this next week. Our cardiologist has already got approval from our insurance for the treatment. Not sure if we should go for it. Any reasearch or opinions would be helpful at this time. I am reading Buhner's books and really want to pursue the herbal route first. Has anyone done IVIG with herbal supplements?
  8. Hi FrikFrak At one time my son was on a very low dosage of minocycline 100mg 2 times daily. He is getting ready to go see the doctor that prescribed this. I will ask about the higher dosage and see what the doctor says. Thanks for this suggestion. With my son having so many symptoms, I think this is the problem. It may be time to try this again at a higher dosage.
  9. I was wondering what the difference was between these 2 test. I'm ready for my son to have the SpectraCell test. I'm not heard of Boswellia. Thanks for posting the information.
  10. Thanks for the ideas sf mom. I will start with the magnesium first. He takes 700 throughout the day but maybe this is not enough yet. I know that Bixan will mess up electrolyte levels and I have increased the magnesium some but maybe not enough yet. We alternate the water and gatorade throughout the day. The Taurine will also help balance the electrolytes. I will go back and look at his last testing for nutritional defiencies, It was done by Genova and measured a bunch of things.
  11. My son has vocal tics but they are pretty well controlled until his scalp gets over stimulated. He uses a mediction called Intuniv. It is a prescription prescribed by a neurologist. My son has trouble with serotinon and dopaimine levels in the brain and this medication helps regulate those neurotransmitters. Chronic illnesses mess up so many things in the body. So it is possible that your new symptoms have incresed your son's symptoms. I have tried a few natural supplements for tics but have found that this medication offered the most relief in the least amount of time. BTW there is a post on natural things to try for tics. It under the helpful ideals post at the beginning of this forum or the fourm on touretts and tics.
  12. Did he pick a virus up a school and over load his immune system. My next thought is his body going back to school full time and meeting new stressors that sent his body in that down hill swing again. This has happened to my son after just attempting to go a half day of school.
  13. Triming with the scissors is bad enough. I would love to give him a buzz cut. With his scalp so tender and sensitive, he could not tolerate this. I gave him 800mg of moltrin 90 minutes before his haircut and he slept for an hour before I woke him up. This did help him relax some and I let him recline in his chair while I cut his hair. This is the first time I have tried giving him a haircut this way. It's also the first time I have given him this much moltrin. However, I'm not comfortable giving a huge amount of moltrin like this but at least we got through a hair cut. I did cut his hair short but his pain levels have been up the last three days. His vocal tic would come and go while I was cutting his hair. After his haircut, he got into the shower to wash up and shampoo. Any stiumlation on or near the scalp makes the pain levels worse. Out of all of his symptoms, this one has puzzled his doctors. I guess I could get my husband to make a video of this situation but we are both hoping that a doctor will get this symptom figured. My son says the headache and scalp pain is the worst symptom of all but he does not want to look like a little girl. He is one tough little teenager.
  14. I have tried about 3 different organinc shampoos. His scalp is very tender and he can't stand a comb going through his hair. My son will wash his hair but it's very painful. My husband helps with this task and it brings us both to tears. My son's vocal tics start up and his headache pain levels rise to level 10. Since he washed his hair on Sunday, his school work has suffered due to pain and fatigue levels. He tries very hard to be positive about his situation. I have given him high dosages of moltrin but it does not seem to help. My husband and I have complained to his current doctors about this problem. My washes his hair every couple of weeks but it's a bad deal. My husband and I have kept hoping the antibiotics would give some relief to this symptom. My son has been on antibiotic since December 21,2013. Our best guess is that our son's brain is on fire. but he does not have the severe neuro psychic behaior symptoms. Which has blown our neurologist away. What I have noticed is long term and short term memory issues are much worse this school year. School work is so much harder. So I am wondering if this is some mild form of encephalities. I just really want a doctor to nail down his diagnosis so my son can have some relief from these symptoms. Because his symptoms have been progressing for 3 years, this has probablely made it harder for doctors to diagnosis. Low blood pressure and a high heart rate is not part of PANS/PANDAS. Maybe this is a new form or PANS/PANDAS. Who knows? My son does not meet the NIH criteria. Sorry for the ramble. I have found Buhner's website and have been looking at some other anti-inflammatory herbs. I am ordering the Japanese Knotweed. Has anyone used Stephania Root or Andrographis Pantculata? Do these help with inflammation? Shampoos that contain Tea tree oil make scalp pain worse. He is using an organic baby shampoo with lavendar but this bothers scalp and headache pain levels.
  15. I tried that with my son and it made some of his other symptoms worse. However, this amino acid needs the help of other amino acids to work in the body. My son takes a supplement from GNC called Amino 1000. Before my son started taking this supplement, he would roll back and forth constantly. I had to give him bendryl or dramamine to make his body stop rolling back and forth. This was one of the worst times of my son's illness. Our cardiologist had just ran a urine test to check for dopamine and serotinon levels and the test results were unmeasurabe and unreportable. The cardiologist and I were having to learn on the fly about this strange symptom. I researched and sent him all the information I could find about serotinon and dopamine After 21 days of being on this supplement, my son stopped rolling and was able to sit up on his own. I have been told to never stop giving the supplement until we figure out this mess. GNC also makes a shake that has all the aminos in it called Amplified Wheybolic Extreme 60. This shake comes in many flavors and can be made with water or milk. My son has gotten tired of the shakes and just takes the supplements right now.
  16. PowPow My son had a neurotransmitters test (urine) done through Pharmasan Labs. His GABA and Epinephrine was low. His Glycine, Glutamate, Histamine, Dopamine, Norepinphrine and Kynurenic acid were all very high. His Sertonin, Taurine, and Pea were all in the normal range. I have been told this is an accurate test. Is there a better test? Rachel
  17. Have you had her brain neurotranssmitters checked? My son had low levels of serotinon and low levels of doapmine. He also had a sleep study done and had the RLS. My son is unable to take the 5htp. Right now he is taking True Calm and it sees to be slowing his tremors down and he is sleeping through the night without his legs moving. He takes the True Calm at night with 100 mg of Magnesium Citrate. My son was never started on a medication for RLS because our doctors thought it would make other symptoms worse for him.
  18. I have been reading some old post on inflammation. I would like to know more about fish oil, bentoninte clay, oil of orgeno capsules, epicor, and mesosilver. How does is help your child with inflammation and pain. How much do you give if you feel comfortable giving out this information. Or you can pm me. My son has been living with daily pain ( headache, scalp, nerve pain). I do give him fish oil but not 3,6 ,or 9. In cooking, I use butter, olive oil, and coconut oil. My son has had the esr and cpr test and they are always in the normal range. However, recent testing indicates high Kynurenic acid and antibodies in Cunningham test panel were high. I have complained to an immunologist about my son's high pain levels. Our cardiologist has tried several different pain medications but nothing at this time seems to take the edge off except 800mg of moltrin. However, moltrin this high causes a sleepy effect, so that's not too helpful when trying to get school work done. However, not much school work was acomplished today. I have tried a lower 400-600 dosage every 4 hours but I cannot tell a difference and neither can my ds. BTW my ds is 5'10' and weighs 190lbs. His pain levels range from an 8 and can go all the way to 10. When levels get this high, he wants a dark room with no noise. We have been to the hospital when pain levels were high and he was given morphine. It took the edge off for awhile but not for long. I have also read about Low Dose Naltrexone for inflammation. Does this help anyone? If you have have the antibodies in the brain in a high range, is this normal to expect high levels of pain? Is this what causes the pain problems in your kids? I have also been reading up on the Kynurenic acid and understand that it causes the nerve pain with the presence of CaM Kinese. I guess I'm really trying to make sense of where my son's pain is coming from. I know it's not all from anxiety. He washes his hair every two weeks because he has very oily skin. But when he does it makes his headache and scalp pain worse. His vocal tics also start up but settle down about an hour later. He shampoo yesterday and today has been awful with incresed pain levels. I have been using the moltrin yesterday and today. But I want some pain relief for my son. Do you have any suggestions on some natural supplements? I am concerned keeping my son on moltin for a long period of time. But what would be considered a long period of time to be on moltrin? Just feeling frustrated. Sorry for the long post. Rachel
  19. Has anyone tried using the DAO enzyme? Does this help?
  20. Since we are on this topic I want to ask about Cinnamon Verum from Sri Lanka. This essential oil is supposed to eradicate several different things. Has anyone used it to help eradicate Mycoplasma? I will find the website and come back and post the article? After reading this article, I think I might try this but I would really like to have doctor's supervision. The article is called Essential Oil Research for Permanent Eradication of Lyme Disease and Coinfecrions. This article is 13 pages long and on the 11th page it tells what to expect. Let me go find the article and I'll post it. Ok. I found the website but it has been change around. On the first page of the website, go down to the last paragraph and click on the word here -that's highlighted in blue. It will take you to the article that I have in my hand now. The article has been shortened some but What to expect is near the end. This part of the article is what caught my attention. However, to do this one must be off all medications. See what you think. There is a lot of good information on this website. http://www.lyme-symptoms.com/Essential.oil.html Mycoplasma can be caused by many different things. If someone has been successful in getting rid of it with antibiotics, I would like to hear their story.
  21. My son is currently on Bixan for Myco P. He started this two weeks ago. In December he was on Aztho for 8 weeks but I saw no improvements in symptoms and was switched to Bixan. I have not seen any major improvements yet but it can take as long as 3 months before improvements can be seen. I am pretty new to all this. Hopefully someone else can give you some more information. There are some old post on Myco P. This stuff is hard to get rid of. Dr. Garth Nickelson has done much research in the area and has a web site online with many articles about Myco P. I have learned a great deal from his web site and from this forum.
  22. 3bmom I hate to tell you this but it's also found in non-paraneoplastic encephalities. I have found more research to prove this. I am also checking to see if this affects anti-adrenal encephalities. I will post the articles later today or tomorrow. Here are the other articles that I found for non-paraneoplastic encephalities. I would suspect this might be the problem with my son. This is a milder form of encephalities and affects the limbs. It would cause the tremors. Here are the articles. http://ttp://www.jni-journal.com/article/S0165-5728(08)00179-3/fulltext http://jcn.sagepub.com/content/early/2013/10/02/0883073813500527.abstract http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.2008.03252.x/full
  23. I really did not understand what this was until I made the connect with another post. When my son became sick back in December 2010, I kept taking him back to the doctor because of a severe headache. The next symptom was the scalp pain and then his symptoms kept getting worse after each illness. On a recent test, the Kynurenic Acid showed up high and out of range 22.1 normal range (10.6-19.7) My son's worse symptoms are his headache and scalp pain. So I'm having a hard time of understanding why an immunologist doctor will not do some more testing in this area or is this a neurologist field. This can cause encephalitis. and I believe encephalities is treated more agressively. My son was checked for a few different types of encephalities on a panel 2 years ago but I am concerned about the NMDA Receptors Antibodies Encephalities. Is anyone on the forum dealing with this type of encephalities? I was also wondering if anyone was being treated for high Kynurenic Acid levels.What is the treatment? I have asked for my son to be checked for the NMDA encephalities but are there any other new forms of encephalites that have been found in the last couple of years? I have sent my cardiologist the following articles on Kynurenic Acid and thought you might want to see them also. Our cardiologist has been great about running new test to try and figure out what is causing my son's postural orthostatic tachycradia syndrome. With all this new testing, it does seem like it is immune related. Here are the articles. Happy reading. http://www.corporamed.com/documentos/organix/articulos/Quinolinate-Kynurenate.pdf http://onlinelibrary.wiley.com/doi/10.1111/j.1471-4159.2008.05241.x/pdf http://connection.ebscohost.com/c/articles/57250142/vivo-effects-antibodies-from-patients-anti-nmda-receptor-encephalitis-further-evidence-synaptic-glutamatergic-dysfunction http://www.gla.ac.uk/media/media_276791_en.pdf
  24. I am waiting on the test kit to arrive. My husband and I thought it might be a good thing to do before we had to add anymore vitamins and supplements. My son is on several of them. We are wondering if some of them could be making his illness worse and it would be nice to know what to stay away from and what might be more helpful.
  25. 3Bmom I have ordered the 23&me testing kit for my son. I'm really nervous about getting back the test results but I need to get my son's illness figured out. My husband I do not think the doctors are doing enough for his medical condition. I have seen some old post and have found the site for the gentic genie. Hope you decide to take this plunge with the testing. This test seems like it would offer a lot of valuable medical information. There seems to be several people on this forum that are familiar with this testing. Hope they can help me out when I get stuck.
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