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Mycoplasma Levels Question


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Hi All,

 

My DS4 developed motor tics after being on antihistamines and corticosteroids for a month due to chronic congestion that persists regardless of what antibiotic he's on. Tests showed allergies/sensitivities to egg, gluten, dairy, which have been discontinued for weeks, but congestion and tics continue. A blood test has revealed Mycoplasma IGG: 1.08 and IGM: 521. As I research, I'm starting to suspect that mycoplasma may be playing a larger part here than physicians thought (we've been told repeatedly that a stubborn infection might be living in my son's enlarged adenoids). Can anyone shed some light on these numbers for me?

 

Thanks in advance,

Phil

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Your son has an active mycoplasma infections. Preferred antibiotic is Doxycycline. Some Docs with prescribe similar antibiotic (like minocycline). I'd see a Lyme specialist- regardless of weather you think your child has Lyme or not - but you should test and get evaluated by an LLMD for Lyme since mycoplasma has a very high comorbidity with Lyme. IV antibiotics are another option if your child has tried longer term high doses of Doxy already. My son was on Azthormycin for 2 years - at a high does - when we discovered his mycoplasma. Azith had no effect. He was also on a short course of Amoxicylin (sp) during that time - no effect with that either. BUT - when he initally got DX'd with pandas - the azith worked for a little while. Not a cure, but he improved. Then, it just didn't seem to be doing anything.

 

The reason I'd see an LLMD is, as I said, it is a common co-infection with Lyme, and the LLMD's are used to treating it. They know which antibiotics to use, can recommend detoxing methods , and herbal solutions. I've read a couple mycoplasma researchers think you need both - we use A-myco, and high does long term - Doxycline. Long term is 6months to a couple years. An LLMD can manage you through that. Most "regular docs" will only give you a few weeks at most .

 

Now, this is if your child's mycoP is chronic. If your child is have tics and other behavioral symptoms, then most likely your child's mycoplasma has been there for a while, and is chronic. Also likely that he she has pandas - which may or may not go away when the infection does. If it persists, many of us have found help with IVIG in replacing those autoantibodies that attack themselves.

 

My child was on Doryx - which the stomach tolerates better - but expensive, although our insurance finally covered it after some argument.

 

Regardless, I would not settle for any course of antibiotics without seeing that the mycoplasma titers have gone down. Not just the IgM one, the IgG too. Its good that the IgG isn't too high - there is some evidence that indicates a longer infection, but not necessarily since everyone's immune response is different. Give LOTS and lots of probiotics as well. We recently discovered a powered probioitc that disolves in yogurt - with very high doses of good bacteria.

 

Good luck. If you search my content - you can find lots of stuff on mycoplasma, we've been dealing with it for several years but didn't know it. Finally getting right antibiotics and herbals - huge difference. DS still has some pandas symptoms, and we did do two IVIG's before finding mycoplasma, which were tremendously helpful, but now that DS on right antibiotics - he no longer goes back to the tics and insomnia and bedwetting and ADD..etc that he would with every little cold prior.

 

It usually isn't an overnight thing, once your child is in this state. Esspecially with mycoplasma. "Exaerbations" usually run a course of 6 weeks or so following a cold or other infection. Antibitoics usually shorten the period of time, and lessen the symptoms, but may take a couple weeks to see this effect. For us, it was about a week that we could see the antibiotics having an effect. And, they get better in waves - not linear- so you will see some bad days mixed in with the good.

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Hi Phil!!!! My dd 6 now 7, was blood tested for same stuff. We already knew about milk allergies from family history. But our issues with tics from strep came up in Dec '10. Then at our request in spring of '11 had complete blood test for allergies and our request included Mycoplasma. Had the script but did not do anything with it till Aug of 2011 when tics came back. We were not told of the results. November of 2011 she started with severe ticcing and chorea like movements and we were fighting with Ped on getting our other dd 8 on an abx post strep infection that was pretty bad too.

 

So, needless to say, dd7's myco IgM was 5.9 H (high)with postive being >1.1 When I found this out I was very upset and still am. We did some more Azith for 5 more days and retested in November. IgM was 3.5. This entire time, she was asymptomatic for breathing or sinus issues other than normal itchy noses---thus the tics. We have since gone to a DAN/Integrative Ped. She was on two courses of 10 days Azith then a prophylaxis of M, W and Friday since about Jan. We have seen great improvement with abx and a whole host of other supplements for rebuilding the immune system. I have heard about myco being suspected in asthma, so it is definitely worth looking into.

 

Here is an interesting article about Mycoplasma and some other links if you have not found them already. Good luck!!!!

 

http://www.rain-tree.com/myco.htm -------------this is a good article.

 

http://old.post-gazette.com/healthscience/20030610hasthma2.asp

 

http://ajrccm.atsjournals.org/content/158/3/998.long

 

http://ajrccm.atsjournals.org/content/172/9/1078.long

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Hi Phil!!!! My dd 6 now 7, was blood tested for same stuff. We already knew about milk allergies from family history. But our issues with tics from strep came up in Dec '10. Then at our request in spring of '11 had complete blood test for allergies and our request included Mycoplasma. Had the script but did not do anything with it till Aug of 2011 when tics came back. We were not told of the results. November of 2011 she started with severe ticcing and chorea like movements and we were fighting with Ped on getting our other dd 8 on an abx post strep infection that was pretty bad too.

 

So, needless to say, dd7's myco IgM was 5.9 H (high)with postive being >1.1 When I found this out I was very upset and still am. We did some more Azith for 5 more days and retested in November. IgM was 3.5. This entire time, she was asymptomatic for breathing or sinus issues other than normal itchy noses---thus the tics. We have since gone to a DAN/Integrative Ped. She was on two courses of 10 days Azith then a prophylaxis of M, W and Friday since about Jan. We have seen great improvement with abx and a whole host of other supplements for rebuilding the immune system. I have heard about myco being suspected in asthma, so it is definitely worth looking into.

 

Here is an interesting article about Mycoplasma and some other links if you have not found them already. Good luck!!!!

 

http://www.rain-tree.com/myco.htm -------------this is a good article.

 

http://old.post-gazette.com/healthscience/20030610hasthma2.asp

 

http://ajrccm.atsjournals.org/content/158/3/998.long

 

http://ajrccm.atsjournals.org/content/172/9/1078.long

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Thank you all very much for your fast and informative responses! It seems most of the literature out there regarding PANS mentions strep, but not mycoplasma. Because my DS tested negative for strep numerous times, and does not exactly fit the standard criteria for PANS, I thought he was in the clear. But now the pieces are beginning to come together. Luckily my ped. is aware of this condition, and although I'm upset that he didn't call me immediately with the myco test results (I had to call this morning), I think he'll be on board regarding a long term abx treatment -- at least until we find an authority to help guide us through the process. I wish you all the best of luck on your journeys. I'll be back with more questions!

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  • 1 year later...

Hi all,

I've posted here before but I'm having some trouble figuring out what to do with my DS12. He is being treated for chronic Mycoplasma by Dr. T. We have initial remarkable success after a couple of days on each new antibiotic but after 2 weeks we have a slide. His primary symptoms are Tics, anxiety and OCD. We started Minocycline 2 weeks ago and he was back to his pre pandas self in 48 hours. I was holding my breath because I've seen this before....the last 2 days I noticed he is slipping. I know many talk about a saw tooth recovery but I can't help thinking he needs another antibiotic in combination with mino. He is taking 100 mg 2x's a day. Have any of you had an experience that involved great success and then after a short time slipping back? Have any of you been on Minocycline with another antibiotic that seemed to help? I would really like to try A-Myco but can't find a way to purchase without a LLMD and we live in Michigan where there doesn't seem to be a good doctor for this.

 

Any information would be greatly appreciated.

Thanks so much

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Your son has an active mycoplasma infections. Preferred antibiotic is Doxycycline. Some Docs with prescribe similar antibiotic (like minocycline). I'd see a Lyme specialist- regardless of weather you think your child has Lyme or not - but you should test and get evaluated by an LLMD for Lyme since mycoplasma has a very high comorbidity with Lyme. IV antibiotics are another option if your child has tried longer term high doses of Doxy already. My son was on Azthormycin for 2 years - at a high does - when we discovered his mycoplasma. Azith had no effect. He was also on a short course of Amoxicylin (sp) during that time - no effect with that either. BUT - when he initally got DX'd with pandas - the azith worked for a little while. Not a cure, but he improved. Then, it just didn't seem to be doing anything.

 

The reason I'd see an LLMD is, as I said, it is a common co-infection with Lyme, and the LLMD's are used to treating it. They know which antibiotics to use, can recommend detoxing methods , and herbal solutions. I've read a couple mycoplasma researchers think you need both - we use A-myco, and high does long term - Doxycline. Long term is 6months to a couple years. An LLMD can manage you through that. Most "regular docs" will only give you a few weeks at most .

 

Now, this is if your child's mycoP is chronic. If your child is have tics and other behavioral symptoms, then most likely your child's mycoplasma has been there for a while, and is chronic. Also likely that he she has pandas - which may or may not go away when the infection does. If it persists, many of us have found help with IVIG in replacing those autoantibodies that attack themselves.

 

My child was on Doryx - which the stomach tolerates better - but expensive, although our insurance finally covered it after some argument.

 

Regardless, I would not settle for any course of antibiotics without seeing that the mycoplasma titers have gone down. Not just the IgM one, the IgG too. Its good that the IgG isn't too high - there is some evidence that indicates a longer infection, but not necessarily since everyone's immune response is different. Give LOTS and lots of probiotics as well. We recently discovered a powered probioitc that disolves in yogurt - with very high doses of good bacteria.

 

Good luck. If you search my content - you can find lots of stuff on mycoplasma, we've been dealing with it for several years but didn't know it. Finally getting right antibiotics and herbals - huge difference. DS still has some pandas symptoms, and we did do two IVIG's before finding mycoplasma, which were tremendously helpful, but now that DS on right antibiotics - he no longer goes back to the tics and insomnia and bedwetting and ADD..etc that he would with every little cold prior.

 

It usually isn't an overnight thing, once your child is in this state. Esspecially with mycoplasma. "Exaerbations" usually run a course of 6 weeks or so following a cold or other infection. Antibitoics usually shorten the period of time, and lessen the symptoms, but may take a couple weeks to see this effect. For us, it was about a week that we could see the antibiotics having an effect. And, they get better in waves - not linear- so you will see some bad days mixed in with the good.

Hi norcalmom,

 

My dd's myco levels are very high. She is being switched from minocycline to rifampin, because of mood swings and increased anger. I know she may be herxing a bit, but that was our LLMD's call. What herbals do you recommend in addition to the abx?

 

Heather

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rifampin didn't do anything for us. Also - I believe Ive read you should not take rifampin alone, its usually paired with another antibiotic - it increased the permeability of the other antibiotic thru the BBB is how I understand it,

 

Is there a reason you have not tried Doxycycline? Mino is not Doxy, it is in the same class, but not as effective for MycoP (my understanding).

 

I THINK we tried the rifampin because our LLMD was used to seeing Bartonella whenever there was significant neuro phych symptoms, and riphamin paired with (insert antibiotic here for bart...I think we tried both mino and azith) is usually the treatment. But for us, we had more success with the Doxy (we used Doryx form of Doxy).

 

DS is now off all antibiotics, still has one or two troubling symptoms. Waiting for last MycoP test - which we took after he went off all antibiotics for several months - to see if the titer is going back up or not.

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I hear you. my son is the fairest in the west. We went of Doxy last summer, and started it back up in late Sept.

 

There is an herbal called A-myco (I think it is a Byron-White formula) that is a tincture that DS also took.

 

Also, I have found DS low in Vit D3 (his level was 16) and we not have him on 5000 per day until his levels get up - and I think it helps a lot, with a number of ht ints inlcuding boosting immune system.

 

And, DS just started Plasmic Transfer Factor, another thing to help regulate immune system.

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