mycoplasma

[mickie p]

Hello all,
I’m curious as to mycoplasma testing. Is it important to know if we have mycoplasma or the type? Or is it just a costly test that we can continue on AP without. If the results of the testing are known, would that make us treat the disease more aggressively?
confused, as usual! thanks, mickie

[Maz]

@mickie p wrote:

Hello all,
I’m curious as to mycoplasma testing. Is it important to know if we have mycoplasma or the type? Or is it just a costly test that we can continue on AP without. If the results of the testing are known, would that make us treat the disease more aggressively?
confused, as usual! thanks, mickie

Hi Mickie,

During Dr. Brown’s day, he would initially test a patient for mycoplasma, strep, chlamydias, etc and this would help determine treatment course for a patient. For mycoplasma, the tetracyclines in low doses are enough, for strep he’d use a penicillan, like ampicillin, etc. In some cases, he would only use a penicillin according to Millie Coker-Vann with whom I had the fortune of speaking last year. He would then re-test the patient over time to watch infection titers coming down….although in some cases…e.g. patients with a history of strep (but normal strep titers), he would use a penicillin regardless. This is described in the book.

Today, experienced AP docs tend to test for mycoplasma really for the purpose of coding clindamycin IVs for infection with insurance, because these are not considered a standard of care for rheumatic patients. However, it’s just too expensive and impractical to keep re-testing to watch titers coming down. Dr. F. has his own labs out in CA, much like Dr. Brown used TARCI labs, so some docs will still do testing at intervals.

The main point Brown made, however, is that even in patients who test negative for mycoplasma, AP works. There are instances where a patient may not do as well on just a tetracycline, however, or plateaus out, in which case further infection testing might be warranted…e.g. for Lyme and its coinfections or for the chlamydias or other suspected causative pathogens, like H.Pylori, k. pneumoniae, c. trachomatis or c. pneumoniae, or proteus mirabilis, for instance. In these instances, multiple classes of abx in different combinations may be needed.

In the case of mycoplasma, it’s a slow-growing/replicating organism, so doesn’t require daily, aggressive dosing. Other types of infections, however, may require different combinations and dosing schedules. However, when just starting out on AP, beginning as Dr. Brown would do on a low dose and possibly adding in IV clindamycin is a reasonable way to begin. If progress plateaus out later or other pathogens are suspected from the outset, however, like Lyme, it’s not worth waiting to see a Lyme Literate MD to see if low dose monotherapy is enough for rheumatic disease, because usually it’s not in the longer term. “Lyme” is thought to be just borreliosis, but it’s usually a combination of tickborne infections with Lyme just kicking things off an lowering a person’s ability to fight the other infections. Other infections, like the chlamydias, usually require combination therapy, too.

When starting out, though, using just a low dose tetra (like minocycline or doxycycline) is generally enough to begin to turn around rheumatic disease (except in the case of scleroderma, which usually requires a more aggressive approach). An experienced AP doc can be invaluable as one travels down the AP road, however, as he/she will be able to tweak the protocol and suggest supportive adjuncts to the therapy (e.g. candida control, diet, detoxing methods, supps, etc).

So, in a nutshell, today it’s really only worth testing for mycoplasma if you want to try to get IV clindamycin covered by insurance. This is because you can pretty much assume you will have one strain of myco or another – most of the world’s population are carrying some strain of mycoplasma and testing usually only covers the more common strains (there are many!). It’s just that rheumatic tissues, as Dr. Brown described in the book, become sensitized to the toxins released by mycoplasma, which he dubbed, “bacterial allergy” or “bacterial hypersensitivity.” This is a well-known reaction in infectious disease settings, but in terms of how it relates to rheumatic diseases, it’s not universally accepted. So, if one can prove they have a mycoplasma infection, then insurance will cover IVs for this, but not if coded to treat rheumatic disease, per say.

I hope that makes sense and I haven’t confused the issue further for you, Mickie? I’ll have another go at explaining if so.

[judy cash]

Mickie,
If I remember correctly, you went to see Dr. Sinnott, in Iowa. If this is right, I bet he tested you for mycoplasma. If you want to know the results, just call or e-mail him. He will gladly give you the results… This is what I did.
Judy 🙂

[mickie p]

Dear Maz, You are an amazing individual!! You could really put a book together with your knowledge! Using some of the forums best questions could make for some good reading. Thanks so much for all the information you provide.

And to Judy Cash, yes, Dr S could well have tested me to use the results for my insurance.
Appreciate the tip.
mickie

[lilly]

Hi Everyone! I am new to this but its for my husband that I am looking into anything I can find for his illness. I have read about this bug that is so small it can’t be touched in the system? My husband is 49 years old and has been sick since last Dec 2010.

It started as a bad flue to a cold then a persistent cough. He is a very healthy man so he rode it out without seeing a doctor until January 2011. First the doctor told him it could be pnemonia, Lupus, TB, and all sorts of other nasty things but he went to have a CT scan and it showed some infection in the lungs? After that his breathing got much worst and the shortness of breath became quite a problem, he also had an erratic heat beat when this was happening.

I took him to the hospital to get some help since his doctor wouldn’t give him anything to help the breathing except inhalers which didn’t work. A specialist there asked him some questions and first they thought it was Bird fanciers lung because we had a sun conure parrot in the living area where we both were in frequently. After doing all my research on that disease and removing our 7 year old friend for life from our home, which was sad but I didn’t hesitate at all since I thought it was the cause of my husbands problem. I cleaned the house from top to bottom and did anything I could.

He had a lung biopsy 3 weeks ago and the pictures I saw of it was horrible!!! the sides of his lungs had these slightly raised white bumps like chicken pocks with white heads….. He got his results last week and the doctor said it was inconclusive but was pointing towards pulmonary fibrosis. He didn’t acknowledge until that meeting that for several months my husbands left hand from the fingers to past the wrist was tightened and leathery looking with white calcium like deposits under his skin that were not ulcers but very visible???

His fingers will go from extremely cold to almost blue then white and last winter he suffered such pain from the coldness. his circulation looked cut off but all the doctor said was it was probably a flare-up from his carparal tunnel syndrome???

I am shocked that a lung specialist wouldn’t look into the many problems besides the lungs my husband is having. He is now going to see a rhumatologist because the doctor figures it may now be sclerodera or rhumatoid arthritis??? Even I knew it was something else when I read all the symptoms and numerous websites of information.

I sure would like to feel secure in the medical profession that a specialist in the field would check all the facts and symptoms before scaring people in the beginning that it could be lung cancer it could be???????? He has none of those!!!

I sure hope this forum can help me with getting the right professional to see my husband and like you all have great testimonials in this horrible illness I can contribute soon with positive results for my husband.

I pray each day that this disease will go into remission and be an ugly memory of the past… I would appreciate any information from you kind people that have posted so many positive things and Dr. Brown…. god rest his sole seems like a man that didn’t just give people a pill and say “That’s all I can do” .

Thanks for reading this and I look forward to any help…….

Yours truly ,

Lilly

[Maz]

@lilly wrote:

I sure hope this forum can help me with getting the right professional to see my husband and like you all have great testimonials in this horrible illness I can contribute soon with positive results for my husband.

Lilly, you are an AMAZING wife and advocate to get onto this so quickly for your husband! If you let us know which state you’re living in, we can send you a list of physicians who use antibiotic therapy for rheumatic disease and, if you prefer, can send you the name of a very experienced rheumy in CA who can provide both diagnosis and longterm therapy for your hubby to get him well onto his road back to recovery.

In the meantime, for lung fibrosis, you might want to research measures for boosting glutathione in the body. Glutathione is the body’s master detoxifier, produced in the liver, but when we’re chronically sick, glutathione becomes heavily depleted. The lungs of a healthy person are rich in glutathione,but not so in someone with lung fibrosis. There are oral supps, like NAC (N-acetylcysteine) and Alpha Lipoic Acid that are very beneficial for helping to reverse lung fibrosis, but also Glutathione IV pushes and undenatured whey protein.

Let us know where you are and we can send a list of AP (antibiotic protocol) docs in your state and a “most experienced” list, if you are able to travel.

Hang in there…finding a doc to help is the first step, so while researching this, take time to wade through the info on the main site (click banner above) in the Newcomers and Education sections of the site and also to read both Henry Scammell books – The New Arthritis Breakthrough and Scleroderma – The Therapy That Can Save Your Life.

A warm welcome to you both and glad you found us! 🙂

[lilly]

Thank you so much for the fast reply!

We are located in Vancouver B.C.

I am awaiting your reply of the doctors that can save my husband. He is such a good person and never smoked or did drugs ever.

With the technology we have now I’m sure he will combat this disease.

Thank you for your kind reply and I will also contribute to this board as this journey for my husband starts….

[Maz]

@lilly wrote:

I am awaiting your reply of the doctors that can save my husband.

Hi Lilly,

Will send you a PM (private message) with a physician list. Unfortunately, Canada isn’t great for AP docs and this might involve travel down to WA state or, if you choose to get your hubby to Dr.F in CA, who is the rheumy mentioned previously, for a full rheumatological work-up and to get started on the therapy. It’s expensive seeing this doc, but some folk just prefer to have a one-stop doc, one who can diagnose and monitor the rheumatic disease while on the therapy.

To retrieve your list, just click above where it will say (1 new message) right beside the User Control Panel. 🙂 If you’re still online, it will take a few mins for me to compile the list for you.

Can’t stress enough how important it is to research this therapy as much as you can…it’s a treatment choice that requires folk to be invested in it and so understanding the rationale for its use is critical. Just take things in small steps, as these early days can be exhausting, I know. We’re all here if you have questions as you get going – we may not always have the answers, but there are a lot of experienced abx therapy users here.

[lilly]

Hello Everyone!

I have Some news of the horror that has been going on almost 9 months now…… I won’t re-cap but will tell you all the updates and startling findings!!!

Two weeks ago, after all we heard from the doctor that it was pointing towards idiopathic Pulmonary Fibrosis. He had complications with the lung biopsy he had, with pleural fluid spouting out his incision. I decided after this so called specialist that wouldn’t look at the apparent visual of my husbands right hand that was leathery skinned, tight and calcium deposits under the skin and puffed up fingers and when they got cold turned white or blue????

I finally got mad and called the office and said to look at my husband’s hand!!!!!!!! his neck area with banding skin and the sorta lump like feeling he has when swallowing???

I researched it all and after coming to this miracle site!!! I decided to again think out of the box and see if my husbands GP would consider trying Mycocyclin as a start until he could see the rheumatologist.

After day 1, his hand started to appear less swollen, day 2, I could actually pinch a bit of skin….. day 3 was a bit of a setback . He was experiencing light headedness and sounds of bubbly water in his lungs or chest wall??? I made him go to the hospital and they ran tests…. It was some excess pleural fluid and maybe a small amount of air trapped because of ?????

Now is where I get really angry!!! There was a specialist there that looked at my husband and examined him thoroughly and said “You have Sclerderma with some lung involvement!!!!!!!

It took 9 months for the right doctor to finally 100% with out a doubt say he has that???? I am perplexed that the doctors here in Canada can over-look such visual signs and be so ignorant almost be like “DUHHHH” this was the second doctor at the hospital this evening and he was originally from Texas and told us about the studies in Rheumatic diseases they do there. He volunteered to point us in the right direction!!!

As for the biopsy!!!! he was upset that my husband even had it. considering it was so visible that my husband had scleroderma!!!

I am so grateful that I have always thought out of the box!!! and love my husband dearly and I will continue to be an advocate with finding more and more information to get rid of this disease once and for all.

As I have read an article of a rheumatologist that was honest enough to say if A doctor or person has a vested interest to cure this, then it will be cured… otherwise just send us home with expensive pharmaceutics and take them, and see you in a week for more????

So as he said, I have a vested interest, my sole-mate is suffering from this disease….. so with knowledge and a lot of prayer It will be like the classic movie !!!!!! Scleroderma…… “GONE WITH THE WIND”

I will let you all know that I am studying the possible infection of a carparal tunnel surgery done on my husbands right hand… Coincidentally, the same hand that suffers the scleroderma? and why did after 3-4 weeks after the surgery was done did my husbands body puff up like popeye???

The attending doctor, at that time, told him his immune system was attacking itself???? He was sent home and told it will pass??? Then the cough and shortness of breath followed after a bad flu we all had suffered at Xmas time last year???

This has me wondering if there is any connection at all? I will research this information as well as to, after a carparal tunnel surgical procedure can that mycoplasmic germ have entered through his incision?

I will give you all updates on this but it definitely is going with Dr Browns study of bacterial!!!! I am a 100% believer in these diseases originating from this bacteria!!!

Take care, god bless….

Lilly

[lynnie_sydney]

Lilly – well you’ve done an amazing job this far. Sounds like there may be ongoing investigations into the cause or trigger for your husband’s SD. Incidentally, all conventional docs will call auto-immune diseases of any kind idiopathic – of no apparent cause – and the conventional wisdom is that the immune system starts attacking itself for no apparrent reason. Most folks round here tend to believe that the body is such an intelligent organism that it doesnt start attacking itself for no reason…….and hence why many find their way to Dr Brown and infectious origin. There can be many triggers. However, in the case of SD and with lung involvement, if it were me/my loved one, I would not wait for definitive answers as to cause. I’d pursue them AND I’d get onto Minocin as fast as I could get a prescription and the prescription filled. Most with any form of SD will tell you to jump on it as fast as possible. I’d also add in N-AC as soon as possible for the lung component.

SD folks will chime in with their wisdom and you may also want to PM Parisa for her wisdom in her journey with her husband. At one stage, they thought he had SD, then changed that DX to dermatomyositis with MCTD which turned out to have been caused by underlying Lyme Disease. They’ve had a long journey and he is now 90% better. Here is a link to Parisa’s first post regarding her husband’s improvment.
viewtopic.php?f=1&t=995
Hang in there. You are doing great!

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)

[lilly]

Thanks so much Lynn… I can’t seem to send PM’s

Could you please forward this to Parisa? All I get for you and her is user unknown? I must have my setting wrong or something but would really appreciate you sending her this one?

I posted my story about my husband but Lynn said you may have some experience in this because of your husbands disease.

I am really not sure how my husband got this, as many ask that but tonight was an eye opener for me.

I just want my husband to be the man I married without this horrible disease causing him the breathing issues and scleroderma.

If you read my posts you will understand the frustrations I am having with this as to Who are professional Doctors anyways?

If we hadn’t met this one tonight I would still be struggling in anger as to why the doctors here can’t make a simple visual inspection instead of a lung biopsy inconclusive!!! grrrrrr it makes me so angry and yet I feel that finally, only tonight we made some head way to this.

Please if you have some information that can put some peace to this battle not only my husband has had but me also, watching my sole-mate in life suffer from this, He was only less than a year ago a fun-loving, laughing man that was so full of life. I so wish to see that man again instead of the breathless when exerted, tight skinned, always coughing honey!

I would appreciate if you could tell me of how you knew your husband had this disease as well as the recovery and what steps you took to get your love of your life back?

I look forward to your reply,

God bless,

Lilly

[lynnie_sydney]

Lilly – I will forward to Parisa for you.
Just to confirm about sending PM’s. Click on ‘0 new messages’ above. Then type forum user name (exact name) into the box at the top(for example lynnie_sydney or Parisa). You then click ‘add’ after each name (dont type in multiples). Then put something in the subject line. Then type your message into the text box then either click on preview (if you want to check it) or click on submit when you send. It will tehn sit in your outbox until recipient picks up the message. Does this help?

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)

[lynnie_sydney]

Lilly – I think I know what happened re your Private Message. Newly registered users are required to have 3 posts before they can send PM’s. This is to discourage people from registering and then simply using the system as a private messaging vehicle. Dont think you’d reached 3 posts before you tried to send the PM. Should be fine now.

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)

[Parisa]

Hi Lilly,
I sent you a test PM. Let me know if you’ve received it.

[lilly]

Hi Parisa:

So sorry I am trying to send it but it sure isn’t cooperating! Maybe like Lynne said I need another post. Hopefully it will work going over Lynn’s directions to send PM’s As I type this…

Thanks again,

I look forward to communications with you… thank you….

Lilly

[Author]

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