What type of blood test to get?

[TeeLeeF]

Hello,

I am just learning about Mycoplasma and it’s links to RA. My son has had JRA for 9 months. He is only 15 months old. Time is of essence as he is a growing boy and I need to get his inflammation under control. I have ordered the Arthritis Breakthrough book, but it has not come in yet and I need to get moving or he will be put on stronger drugs. I am trying to avoid this because they will not be good for his “Leaky Gut.” I cannot find it anywhere on this site what exactly my Dr. should test for. Should she be testing IgG, IgM, PCR? M. fermentans, M. hominis, M. penetrans and M. pneumoniae anything else? I am in the DC area? Any particular labs? Please let me know ASAP.

Thank you community!

tee leaf – your post has been moved to General Discussion from the Personal History and Progress section of the forum which is for authors’ journal notes on their progress on AP and which can’t receive replies from others. General Discussion is the area where all general topics and questions are posted. RBFV

[marypart]

I’m going to PM you. that means private message.Just click on new messages at the top of the page.

[TeeLeeF]

Hi Mary,

I am interested in your Dr. If you could message me their information that would be great.

[Maz]

@TeeLeeF wrote:

Hello,

I am just learning about Mycoplasma and it’s links to RA. My son has had JRA for 9 months. He is only 15 months old. Time is of essence as he is a growing boy and I need to get his inflammation under control. I have ordered the Arthritis Breakthrough book, but it has not come in yet and I need to get moving or he will be put on stronger drugs. I am trying to avoid this because they will not be good for his “Leaky Gut.” I cannot find it anywhere on this site what exactly my Dr. should test for. Should she be testing IgG, IgM, PCR? M. fermentans, M. hominis, M. penetrans and M. pneumoniae anything else? I am in the DC area? Any particular labs? Please let me know ASAP.

Hi TeeLeeF and a warm welcome to you!

So very sorry to hear about your dear baby. You may want to connect with Evalon (Yvette), whose baby daughter was pretty much the same age when she was dx’d with JRA (or now known as JIA – juvenile idiopathic arthritis). Here is a link to a past discussion and, once you’ve posted here 3 times you should be able to send Yvette a PM (private message) to ask her about her journey to get her baby girl well again. All you need to do is click on her user name and then select “private message.”

viewtopic.php?f=1&t=7261&p=61351&hilit=yvette#p61351

There are a couple of good doctors in the DC area who are actually LLMDs (Lyme Literate MDs) and will treat pediatric cases. In fact, if I was down in your area, I’d be going to see Dr. J myself! One of the “most experienced” and well-loved LLMDs on the east coast.

I saw your email come in tonight to the apdoctors email, which is a good way to go about asking for an AP doc, as Diana, our AP doc first-responder is a marvel…there every day, working completely anonymously to serve the AP community with physician referral lists. I am the one who usually sends out the LLMD lists, so if you would like this listing, too, let me know. 😉

You will not need to get myco testing prior to visiting one of these docs, as it’s not a pre-requisite for any experienced physician who adheres to infectious theory…basically, these docs assume infectious causes and don’t pay heed to the “idiopathic” designation. The integrative physicians will also be able to guide you through any “leaky gut” issues and help to heal or avert this issue.

TARCI labs used to the the #1 lab for getting myco testing run and still would be, except that Dr. Brown’s colleague, who runs the lab has been in ill health and near retirement. So, testing through this lab can take months and it can be challenging to get a response for a testing kit. Therefore, a good alternative is the following:

http://www.clongen.com/index.php?option=com_phocagallery&view=category&id=1&Itemid=71

As you will see from the testing list, there are many pathogenic strains of mycos that may be offenders, in addition to others, such as Lyme disease and other tickborne pathogens, chlamydia pneumoniae, various viruses, parasites, etc. Getting tested for all of these would be extremely costly and unnecessary and, as many of these docs work out-of-network, it is just prudent to save those $$$ to pay for an experienced doc who will be able to do a clinical work-up based on symptomology, patient history, and regular labs. They will also suggest which labs may lend support to a clinical diagnosis. Mycoplasma, in general, tends to be pretty universal amongst the population…it is everywhere – in the air we breathe, in the soil, contaminating foods we eat, and is one of the most common lab contaminants. The difference with rheumatics is that Brown believed that this population had a particular allergy to the toxins released by these bugs…sort of like two people standing in a barn and both being exposed to hay, but only one having an allergy to it.

More importantly, at this stage, is finding a really good doc who (a) believes in infectious causes and will treat with long-term abx and (b) is open to treating pediatric cases. Not all of these docs will treat young folks and babies and so many parents find themselves traveling across country for treatment. You’re fortunate in terms of location, though. 🙂

Hang in there, TeeLeef, there is every hope that you can get this turned around for your little man. It can be tough being an up-stream swimmer, choosing a therapy that is not mainstreamed, especially when a small child is involved, so you must do what you think is right for your child. Learning as much as you can about the therapy will also help in terms of being able to make informed decisions that will serve you well for the long haul.

Let me know if you’d like the LLMD list for Wash DC and surrounds. Would be happy to send it to you.

[lynnie_sydney]

I’m going to PM you. that means private message.Just click on new messages at the top of the page.

marypart – TeeLeeF will not be able to pick up a PM as yet. New members have to post 3 times before they can send or receive PMs. It’s a safety net in the system designed to prevent spammers being able to access the PM system and Members inboxes.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[evalon]

Hi…SORRY to hear about your little one…My daughter, diagnosed at 18 months, couldn’t stand or walk for over a year until we found the right doctor..who treated her with abx..she was just released from physical therapy as she can now do everythign that the other kids do..yes..it was an uphill battle all the way..and I would do it again. in a heartbeat. I’ve said it many time ans and can’t say it enough..I would NOT have been able tp keep fighting for my baby without the support and guidance from Maz and so many others here…..PLEASE.//email me and wre can talk….YES..I will put our success story on here soon..with pide and joy!!! LOVE YOU AL:L!!!!!!! yvette email me- evalon@aol.com

[DragonSlayer]

Hi, TeeLeeF:

I am sorry about Your son! This is way too young, and in fact:

My son has had JRA for 9 months. He is only 15 months old.

Maybe I am misguided, but I just have so much trouble believing in JRA when so many cases are eventually re-labeled as JAS often after the skeletal damage has already been done.

Recommend adding tests: (non-serological) HLA B27, IgA, ESR, CRP.

Best of Luck,
John

[TeeLeeF]

Thank you all for your responses.

Maz, I would like a list of the DRs in my area. All of the ones provided before would not see infants. I have found a Dr. down in Fredericksburg area, but the practice is going through some changes and they are too busy to take us on right now. He needs someone ASAP, as he is getting worse. My Integrative Dr is willing to start the AP if that is what we choose, I just prefer someone who has dealt with this before.

[TeeLeeF]

John,

Thank you for your response. I will start doing research on JSA. I wonder as Jonah did start out with gut issues. Can a definitive diagnosis be made with a test?

[Maz]

@TeeLeeF wrote:

Thank you all for your responses.

Maz, I would like a list of the DRs in my area. All of the ones provided before would not see infants. I have found a Dr. down in Fredericksburg area, but the practice is going through some changes and they are too busy to take us on right now. He needs someone ASAP, as he is getting worse. My Integrative Dr is willing to start the AP if that is what we choose, I just prefer someone who has dealt with this before.

Hi TeeLeeF,

I’ve sent you a PM with everything we have listed for VA and Wash DC areas, as well as one in NYC who is experienced and sees pediatric cases (Evalon’s baby’s doc).

[Author]

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