Pots Is Now The Seconday Diagnosis

[looneymom]

Tyler had a good appointment with the cardiologist today. Our cardiologist believes the autoimmune neuro-antibodies in his brain is being caused by the Mycoplama P, which in return is causing the POTS. The treatment plan is to get rid of the mycoplasma P and the neuro- antibodies. Tyler will be having another lab next week to recheck the mycoplasma p antibodies to see if his current antiboitic is making a difference. The antibotic is making a huge difference in his blood pressure. After the test on Monday, I be taking Tyler down to 30 mg of midodrine 3 times a day to see if his blood pressures will still stay up.

If Tyler's mycoplasma antibody levels are not coming down, the cardiologist is going to switch him to a different antibiotic. He is also considering some immune supressing medications for the autoimmune neuro-antibodies. He is leaning towards this over the IVIG treatment. The IVIG could cause Tyler's current symptoms to become worse. Studies has shown that IVIG can make vocal tics worse and some of Tyler's other symptoms.

I will be starting Tyler on some herbal supplements for inflammation. Our cardiologist has given his approval but he wants to do an EKG one week after we start a new herbal supplement. Tyler will only be doing one new herb at a time. I plan to start him on Japanese Knotweed first.

Tyler is also in the POTS OU study. It did not take long to get this in motion. Our cardiologist is collaborating with several doctors at this time. The new diagnosis is a tongue twister of a name but is is an accepted by our insurance. I will get it in writing first and share it later. Overall, I feel like we now know what is causing Tyler's POTS but still need to figure out which medications will get the antibodies out of his brain and Mycoplasma p out of his body.

[blueskies]

I'm glad to hear that you and your son have had such a positive visit to the cardiologist. It looks really promising.

blue

[lynnie22]

Hi Looneymom,

This is such promising news.....I've never heard of Mycoplasma P, but this is one of many things I don't know. It sounds like you and Tyler are on a really good road. Will be eager to hear how things go.

Lynnie

[corina]

Wow I'm impressed and happy that all your hard work paid off Rachel. Hope your doctor will be able to find the antibiotic that works best for Tyler and that he will finally see improvements!

[Becia]

Go Tyler! Its awesome to see hard work paying off. Keep it up Rachel, and keep us updated

[jpjd59]

Rachel:

I'm so happy that you finally have some answers. Hopefully Tyler will be feeling better soon!

Pam

[valiz]

You must be the best mother ever! I love how you keep looking for answers and advocate for Tyler. I hope this will be the answer you have needed. It would be wonderful if we could quit treating symptoms and have a treatment that will cure dysautonomia.

God bless you as you continue the journey. Thank-you for all your posts. I have learned so much from you and others. Keep posting.

liz

[HopeSprings]

Looneymom, I have questions if you don't mind. Is the M. pneumoniae positive as IGG or IGM, meaning shows as active infection or past? I ask because I have very high levels, but IGG only. Also, what neuro antibodies are you talking about? Are these the same ones recently reported on out of Vandy and University of Oklahoma? Was he actually tested for them? I hope you have found the answer and your son will be much, much better.

[Chaos]

Really glad you're getting some positive results, both with the testing and with some of the treatments you're trying. Hope it continues!

Please keep us posted. It's great to hear what all you're learning. Thanks for sharing.

[looneymom]

I thought you might want to know the research I have been reading that has helped me understand the underlying cause to Tyler's POTS. However, I know we have many new members on the forum that may not know what started Tyler's POTS, So here is a short story.

Before Tyler was diagnosied with POTS he had walking P and constant daily headaches( December 2010). He was taken to a neurologist and this doctor did additional testing. He checked for lyme and mycoplasma P. The titers for mycoplasma were high and out of range but Tyler had just been treated for this with antibiotics.

Six months before this illness (August 2010), Tyler had a sore throat and was checked for strep. Strep test was negative but vocal tics started 3 weeks later. In PANDAS all symptoms start within 2-3 days after a strep infection. So 6 months later, Tyler has walking P and headache. Tyler was able to walk for a 3 month period Oct- Dec 2012. In January of 2013, he caught the flu and all his progress went down hill. Tremors became worse, unable to walk or do physical therapy exercises. In August 2013, Tyler had Cunningham Panel ran, test results were neither negative or positive. In Ocotber 2013, Tyler has a double ear infection and his symptoms are much worse. PANDAS research doctor runs another test and testing indicates HIghly likely. However, Tyler does not meet critereia for PANDAS but need to figure out what has caused these antibodies. These antibodies can be caused by other bacteria than strep. See research.

In December 2013, Tyler has testing for other bacteria. The Mycoplasma IgG levels are very high. Usually IgG levels indicate a past infection but many CFS doctors are doing research and finding this is not always the case. Since this condition has affected his heart rate and blood presure, our cardiologist has taken control of all treatment. The current antibiotic that Tyler is on is keeping his blood pressures up. With this type of improvement, our cardiologist is going to continue to run labs to see if this bacteria load is coming down and then he will have to figure out the best way to get the anti-neuro antibodies out of the brain. Tyler is in the research for POTS study at OU. It will be at least 4-8 weeks before I hear anything on test results. When you are in a research, they can basically tell you what is present verbally. However, in the 2nd part of this research they are wanting people with an underlying condition so Tyler was a match for this study. I really think if a bacteria/viruses can cause these antibodies in the brain of a child, then I wonder what this might do to an adult if left untreated for so many years. The CFS doctors may have this figured out before anyone else does. Here is the research.

http://www.endfatigue.com/book_notes/Fftf_chapter_5.html

http://www.moleculera.com/

http://www.oumedicine.com/mi/faculty/madeleine-w-cunningham-phd

http://journals.lww.com/infectdis/Abstract/2009/09000/Postural_Orthostatic_Tachycardia_Syndrome.16.aspx

http://pediatrics.aappublications.org/content/120/2/305.full.pdf

http://roczes.ovh.org/borelioza/Immediate_Relief_of_Mycoplasma_pneumoniae_Encephalitis_Symptoms_After_Intravenous_Immunoglobulin.pdf

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3292400/

[HopeSprings]

Oh, thank you Rachel! I will definitely be reading the articles you posted! I'm not clear on the connection between PANDAS, the Cunningham panel and the new Adrenergic Antibodies that were recently found. Can you clarify?

[issie]

Glad you are finding answers. As I have found with myself and this being my best treatment to date, take it very slow and expect a herx. As I told you via PM it gets worse before it gets better. We found it more effective to use lumberkinase at least two hours before either the antibiotic or the antimalarial herb to break down the biofilm. Then at least two hours later a good probiotic. I think I told you of the knotwood product that I'm using and the probiotic. I rotate between the doxy and the knotwood on different days. I wasnt able to go up to the strength the doc wanted me to. But still getting good results. I feel my lowfat, whole food, vegan diet is as much as or even more important than the med protocol. Im one year into this and doing so much better. Not completely well, but for sure on my way. Im a different person, my results are pretty amazing.

http://m.youtube.com/watch?v=r8tESJVvM88

This is a three part talk, and was interesting to me. Shows how some things can be missed with inaccurate testing.

Keep us posted.

Issie

[looneymom]

Thanks Issie. Tyler is having labs ran on Monday to see if the Mycoplasma levels are coming down. If they are not, the doctor wants to put him on doxycline. The video is interesting. Glad I got to see it.

[issie]

I tried to do diet first and then herbals, but noticed more results when I added the doxy. I take doxy only 3 days a week and my herbals 4 days a week. Works for me. I have to be strict on the lowfat part of my diet. When I splurge, I pay. Keep us posted. Hope you get good results. One other thing I must use is turmeric. I tried coming off and crashed big time. I use it daily.

Issie

[Suthrngal]

Can you share what prompted the doc to test mycoplasma if previous lyme tests were negative. I am told by local neurologist that lyme tests must be done in spinal fluid...yikes. What did Tyler's mycoplasma test consist of, just a blood titer? Was it called just Mycoplasma or something more detailed? Yay for his progress!

[looneymom]

Before Tyler was diagnosied with POTS he had walking P in December 2010. A neurologist happen to run blood work that showed high Mycoplasma P titer. Our cardiologist suspected this was a problem from the begining and kept running test to recheck but nothing would ever show up. When the IgG and IgM mycoplasma P blood test was ran, Tyler was never sick with a fever or any type of an infection. Neither one of us is a immunologist, however this live bacteria has no cell wall and can hide anywhere in the body. So if blood flow cannot get to that area where the mycoplasma is hiding, it's kinda of hard for the immune system to fight this hidden bacteria.

When Tyler got sick with the flu last year January 2013, he went 2 steps back His tremors stated back, could not stand or walk. His immune system was trying to fight the flu but meanwhile the mycoplasma bacteria that was hidden came out to play and started replicating itself. Tyler's body has possisibly recognized it as something normal and has accepted this. Like an autoimmune disease. When Tyler got sick with a double ear infection October 2013, He took 2 more steps back. His headache, scalp pain, and hypersesitivity issues are at their worse. His symptoms were worse than they ever had been. Brain antibodies were also found in the Cunningham Test.

In December, Tyler was seen by a Peds. Immunologist. He decided to rerun a test to check to see if any other virus had decided to come out since of hiding since Tyler's symptoms were worse. The IgM will tell you if you have a current infection and Tyler's was normal. Tyler's IgG was way out of range 952 and normal is less than 100. Tyler has not had walking P but he has had the flu and double ear infection. Mycoplama P. can cause other types of infections. If the infection does not get cleared up, the bacteria will continue to replicate itself in the body and cause more problems. At this time our cardiolgist believes this is what the problem is and will continue to treat with antibiotics until the IgG comes down into the normal range.

However, whenever Tyler has a fever or major infection like ear or sinus, his mycoplasma levels will have to be checked. When the immune system is off fighting something, if any mycoplasma is around, it will come out to play. This is the reason why it is important to keep the antibotics in Tyler's system in hopes that it will get the mycoplasma. The Mycoplasma has caused the brain antibodies. Many doctors will not treat for mycoplasma this way. However CFS/immunologist doctors have done research and found out the a high IgG levels can mean that mycolplasma is hibernating in the body. Because the brain antobodies have been found, Tyler will also be given an immune supressing medication. He will be going in tomorrow for labs.

Tyler's Lyme testing came back negative but we did not use the Ignex lab. If Tyler does not progress with treatment, we may get a Western blot done by Ignex. However, we have no good reasons to believe it was started by a Tick. Mycoplasma can be caused by many different things and has many different species.Tyler tested positive for Mycoplasa P. from the very beginning. This form does not usually come from a tick. I have been reading a book called Healing Disease and Coinfeictions by Stephen Buhner. Over half of the book is on how to treat Mycoplasma infections and the different species that cause problems. Mycoplasma depletes the body of many nutrients, so good nutrition is very important. Japanese knotwood is a herb that helps with brain inflammation in Mycoplsama. I have ordered the herb and will be trying this next with Tyler. This book is an excellent source on the many different types of Mycoplasma species and and would encourage anyone that is dealing with mycoplasma to read the book. This author does have a blog online that is also very helpful.

[looneymom]

On Satuday, Tyler's first blood pressure of the day was 130/80. So with cardiologist premission, I have lowered Tyler's Midodrine down to 30 mg 3 times a day. So far so good. Still only having to use 1-3 grams of salt a day. Tyler also had labs ran to recheck for Mycoplasma P IgG and IgM today. Tyler's other symptoms are still the same. The only thing the antibiotic seems to be improving at this time is his blood pressures.

Mycoplasma P seems to like to steal nutrients from the body, so the cardiologist is checking for a few other things. Tyler will start taking Choline tomrrow. A Choline defiency can cause tremors and shaking. We are hoping to see the tremors stop. Choline is a non essential vitamin but it is usuanlly found in a B-complex. The body needs 500 mg daily.

[looneymom]

Had to learn it the hard way. I ran out of Taurine 500 mg this last weekend. I thought the only thing it was helping was possibly balancing Tyler's electrolyte levels. However, 2 weeks ago Tyler made the remark that he never felt the B-12 shot or stinging sensation in his arm while dad gave the shots on Monday and Wednesday. Which was a surprize, because he always complained about the shot. This last week, I went up on the dosage and Tyler was very tired, so I thought maybe he was getting too much. He was having a hard time waking up. Towards the end of this last week I ran out of Taurine and Tyler had a hard time falling asleep. He said it took a couple of hours to fall asleep and then slept through the night. The other thing that was so noticable is that Tyler had been able to sleep with the sheets and blankets on. Now all of the sudden, he cannot stand having sheets or blankets on. So yesterday, I went back to GNC and bought the 500 mg of Taurine. I did some more research and found some blogs and a pain doctor's protocal on using Taurine for nerve pain. Today I will put Tyler back on his Taurine and see if I see the same results again.

[Suthrngal]

I'm following. Looneymom....you're Wonder Woman. Prayed for you last night. Just FYI. I'm learning thru your plight!

[looneymom]

Suthrngal

What brought about your POTS? I can't seem to remember? Was it a virus of some type?

I have been reading more of Buhner's book on Healing Lyme Disease Coinfections. I am amazed at what mycoplasma. P does to the body and what it takes from the host body to survive. I was looking at my son's recent Genova testing for nutrients defiencies and he is very low in Arginine, Lysine, Valine, Alanine, Cystine and Glutamine. I have my son on an Amino Supplement (not the shake) but I'm looking at foods that will convert to these amino acids. At the same time, I am having to watch calories because Tyler is not able to exercise due to tremors.

Mycoplasma also likes to deplete Choline. Without choline, you can have tremors and shaking. Waiting on the results from the 23 and ME testing because it will give me the answer about choline. I started Tyler on Choline yesterday and hope this helps the problem, so he can get started back on physical therapy. Other things that Buhner states to look at are the B vitamins, Zinc, Copper, Selenium and Fatty Acids. Olive oil and Coconut oil should be used in the diet. I have already been supplementing these areas but Tyler's last testing was still showing some defiencies Ugh! I hate Mycoplasma P. Oh well, at least I know what I may be up against.

[looneymom]

It's time to tweek Tyler's diet and maybe I can cut down some of these supplements. So I will share some more information from Buhner's book on Mycoplasma. It does indeed like to eat nutrients. I am going to be adding wheat germ, peanuts, and eggs to Tyler's diet. These 3 foods can replace B vitamins, Choline, Zinc, Copper,Selenium, L-tryptophan, L-threonine, L-serine, and L- arginine. We do eat eggs at our house maybe once a week but I will probably increase that to 2-3 times a week. I will also do some more baking than normal. I have found a wonderful website about wheat germ and recipes that I will share. After reading much information and what this bacteria takes from the body, I will not put Tyler on a gluten free diet any time soon. His body needs wheat germ because he is deficent in some of the amino acids already. So I will be counting calories again but the fat calories should be making him feel fuller.

Olive oil is also great to help treat many different forms of mycoplasma. It's highly recommended to treat Mycoplsama P. It contains the fatty acids that mycoplasma likes. This oil has antioxident, anti- inflammatory, and antibacterial properties that are very helpful in treating certain forms of Mycoplasma. Tyler's recent testing indicates defiences in these fatty acids. Olive oil can be mixed up in juice or gatoride with ice. It hides the taste fairly well and it's great to help with detoxing. Here is the website on Wheat germ and the recipes. I can't wait to try some of them out next week.

http://www.kretschmer.com/about-wheatgerm

[Suthrngal]

Great info...thanks. Sometimes when ur so sick...you can't fight for yourself and research so I appreciate you sharing.

[looneymom]

Still don't have test results back on mycoplasma and Tyler's electrolytes. However, I got the first part of his 23 and Me testing results. It was over the ancestor stuff. It was really interesting. I do think this test is worth the money and that you could learn a lot about your medical condition.

I have been visting another forum and have learned a great deal about how to figure out what your raw data means on the Me and 23 testing. This other forum has helped me learn about the anti-neuro-antibodies that have showed up in Tyler's brain. These antibodies were found through the Cunningham Panel. However researching is suggesting that these antibodies can be caused by other viruses and bacteria. In Tyler's case, these antibodies were caused most likely by the mycoplasma p.

However I wanted to share this website with the information on the 23 and me testing. Maybe it will be helpful to someone else who is still thinking about doing the test. Happy reading.

http://latitudes.org/forums/index.php?showtopic=21211&hl=mycoplasma&page=1

[Chaos]

That's a great resource page Rachel. Has so many of the sources all in one spot. Thanks for posting it!

[looneymom]

Here is some more information to help with the raw data from the 23 and Me testing.

http://www.snpedia.com/index.php/Promethease

http://www.snpedia.com/index.php/SNPedia

Through Tyler's Genova NutrEval testing, I have discovered it shows results for the beginning of the Krebs Cycle. This is a test that the Texas doctor did not go over , so I sent a copy to Tyler's cardiologist..Everything is in range but in the low end of the range. So this may be part of Tyler's medical problem. His Pyruvic Acid is 13 (7-32 normal range) and Lactic Acid is 4.5 (1.9-19.8) . From there we go into the Citric Acid cycle. His citric acid is 79 (40-529) and his a-Keloglutaric Acid is 8 (4-52 is normal). Looking at the Methylation Map, Arginine is what is needed for the beginning of this cycle. Tyler's Arginine is 16 ( 10-64 is normal). I have the feeling the 23 and Me testing is going to shed some light on these test results.