Lyme disease treatment options

[JBJBJB]

[user=1938]Pixelfixer[/user] wrote:

Thanks for the info Kim. What do you think about Mycoplasma testing. Do we assume that Mycoplasma is there? Should we test for it? Does Igenex test for this also? If not who does? (I saw this test suggested somewhere on the blog)

Steve

Perhaps this link helps you

http://rbfbb.org/view_topic.php?id=3011&forum_id=1&highlight=mycoplasma+test%2C+lab

The lab

http://www.tarci.net/

JB

[Davit]

I must say Kim that you have a lot more guts than me or do you americans base every thing on cost. I would not want to condemn a young girl to years of pain if I was wrong. And that is what she will get. Remember or maybe no one does here, that there is only a three year window for optimum chance of cure with Mycoplasma. My opinion, Get the damn test done, Get all the tests done, you have the rest of your life to make money. You have only one daughter to make happy. Would you like me to send you a picture of what a person looks like who misses the AP boat. Not a pretty sight. And with that note I am leaving. I know lyme is important and you want your point across but this is getting to be too much for me. I'm going to put a Dvd in the computer so I can't use it and get any more upset. Sorry for the Rant but I think this is important.

Davit.

[JBJBJB]

Steve,

I don't know if you  have read this link. It gives you overview of all kind of treatment options.

http://www.rheumatic.org/index.html

Lynnie_Sydney provided it. There are actually several mycoplasma labs. The lab I referred to you earlier was the lab used by my AP doctor (Dr S in Iowa).

Now you know why I said I was like “drinking from a garden hose” when I first came to this board. A lot of reading to do. By the end of the day, you have to make the final call. Remember, we are not doctors.

Happy reading!!!

:JB

 

[Kim]

[user=1539]Davit[/user] wrote:

I must say Kim that you have a lot more guts than me or do you americans base every thing on cost. I would not want to condemn a young girl to years of pain if I was wrong. And that is what she will get. Remember or maybe no one does here, that there is only a three year window for optimum chance of cure with Mycoplasma. My opinion, Get the damn test done, Get all the tests done, you have the rest of your life to make money. You have only one daughter to make happy. Would you like me to send you a picture of what a person looks like who misses the AP boat. Not a pretty sight. And with that note I am leaving. I know lyme is important and you want your point across but this is getting to be too much for me. I'm going to put a Dvd in the computer so I can't use it and get any more upset. Sorry for the Rant but I think this is important.

Davit,

Put yourself in my shoes.  When I first got sick with Scleroderma and my body was morphing before my eyes, very rapidly, I didn't have the luxury of testing for everything under the sun.  I had already wasted precious time with my rheumy running endless tests and then waiting several months between appointments as I was declining. This doctor refused prescribing me abx and I refused the treatment he wanted to use.  Once I learned of AP all I cared about was getting my hands on Minocin as fast as I could and that's what I did.

If I had stuck with the rheumy I'd be in a world of hurt today, instead, I'm in remission.  Yes, in a perfect world, testing would be nice, but I had a rapidly progressing, very life-threatening  disease.

Take care…..kim

[Davit]

But testing is available. And I am in worse shape because it wasn't and I did go the wrong way for 10 years. I want to cry every time I hear of some one missing the chance. RA is so damaging and once the damage is done there is no going back. once the cartilage is gone and the tendons start to break then all you can do is start replacing or doing without. Yes my RA is in remission and I have no problems with new joints. but because of all the damage from before AP I am hooped at 59 instead of 79. Some things can't be replaced yet.
I honestly hope she doesn't have RA or JRA and she does have three years to find out, but three years go by so fast and how many have gone by hidden. You know this like all the forms of Arthritis are not to be messed with. You know also that if all they test for is antibodies it is probably a waste of time.
Micoplasma that causes pneumonia is such a contaminate it is everywhere. It is so common in other tests that it is discarded. But it looks different from the form that causes RA. It also is not mobile so it isn't considered a problem. But because of the shape of the other and it's ability to spread,once it does spread it takes a very long time to get rid of if ever.
She is too young to have the rug pulled out from under her.
Of course we could all be wrong. That's why I say get all the tests done, and at that, that is still only a start. If this is Arthritis they will have to sift through all the faults tests. It's only a starting place but you have to start somewhere. If I have walked on your toes well then I am sorry but if you dance with some one with RA that is going to happen. This is important to me. Very important!!!

A very tired Davit.

[Pixelfixer]

Kim, Davit, JB,

First I want to say that I really appreciate the concern you have displayed for my daughter. What I'm hearing is that time is of the essence. We need to move soon and get her on the AP. Second, we need to know for sure what we're dealing with so get all the necessary and accurate testing done. It sounds like I should use Igenex and get a Lyme test ordered and this can be done even after AP is started. But, we should get a Mycoplasma test done before starting AP if we want accurate results on that test. Kim, it sounds like you are saying it's more important to get started on AP than to wait for the results of a Mycoplasma test. Davit, it sounds like you are saying it is important to know if the RA Mycoplasma is present and we can most accurately test for that before starting AP. What I'm not sure about is this; what is the importance of knowing the type of Mycoplasma that is present, if any, if we know that Mycoplasma is at the root of the Arthritis, and the AP treatment will be the same regardless. Also, Davit, when you mention “Get all the tests” which specific tests are you referring to? I'm aware of the Lyme and Mycoplasma tests, but what else should we consider? Or is that it? I'm still quite new to this, so pardon me if I ask questions like a kindergartner.

[Davit]

Don't ever be sorry for asking questions. There are so many possibilities here. The therapy will not hurt if it is wrong so it should be started as soon as possible. There are quite a few different types of Mycoplasma and sub types. But for you there are only two important types. The type that causes Pneumonia is bottle shaped and rough and only moves by air. Such as coughing. It causes the little hairs in the lungs to stop moving and the person with it has a dry cough. This one is not a concern to you in the way that it usually goes away on its own. The problem is that it contaminates the tests and it can come from any one even lab people. The one you want to be concerned about has a shape more like the bug that causes lyme. It is smooth and elongated and travels. Old timers used to call there Arthritis “galloping Arthritis” because it would in the advanced stages move from joint to joint. We now know that it is the Mycoplasma fleeing the Immune system. There is good hope for you as RA is usually stereo. It affects both joints although one may be less. OA can be single.(ostio, abuse related). All the Arthritis antibiotics do work and cross over to some extent so it is important to start some thing in the mean time till you know for sure what you are dealing with and you could also be dealing with some things that are still hidden. You will note that a lot of people here have more than one problem. I know mostly RA so when I said get all the tests I merely meant that if her symptoms should point in the direction of some thing that there is a test for it should probably be done. There are other tests for RA but they are mostly tests to check progression. Tests like SED rate and CBC will pick up any infection but still act as markers of how sick internally she is. You can have a very high SED rate and CBC and not show any outward signs. In the meantime your body is fighting for you. Your doctor can explain these and decide if they are necessary. He may not ask for SED because it has to go on the machine right away. CBC can be shipped. Here it is drawn in the lab and put on the machine right away. The choice is yours and I can only say that if it was me I would find a doctor that would start the ABX right away. Within two weeks there should be signs that it is working and then you can decide where to go and what to test for. I only pushed the tests as it seemed you were waffling. It seemed you needed to be stirred a bit and if I am wrong I am sorry. I wish you all the best, I really do.

Davit.

[Pixelfixer]

Thanks for the info Davit. I'm totally in favor of getting any and all tests she needs. I'm just being cautious to learn exactly which test(s) and which lab to use so I don't waste time and money chasing information that is of little to no value to her. We do plan to go ahead with a Lyme test from Igenex and do a Mycoplasma test through the lab that Dr. Sinnot uses. It is the same lab that Dr. Tom Brown used.

Today, Dr. S. and Dr. P. (Peters, in Sioux Falls, SD) spoke with each other to set a plan for Hilary's AP treatment. Starting asap, she will begin receiving her Clindymiocin IV's. I feel reeeeeally good about working with Dr. P. under the consult of Dr. S. and hoping to look back on this in a couple of years or less as just a bad dream and celebrating her recovery. But for now, it's back to reality and taking this one day at a time.

Thanks again for all your help and concern,

Steve

[JBJBJB]

Steve,

If you would act fast, and get an appointment with her primary care doctor (pcd), have him write the permission, it's not to late to do Lyme and mycoplasma tests. To save you time to read, it's better to make an appointment on Monday with her pcd and draw the blood sample on Monday, and shipped the samples to different locations, one to Igenex, one for whatever the mycoplasma lab you would chose.

This is because you don't want the blood sample sit there for a long time. It can affect the accuracy of the results. Kim mailed her sample on her own. Some labs do not allow you to mail the sample on your own, like my lab. They would mail it for you after they “process” it….. so you would have to get the nurse's name and call them the second day to make sure they send it out.

Last but not least, after your girl is on minocyclin, tell her little brother not to bother his big sister. A lot of times, some people can become very irritating, anxious and depressed…. I've got two kids, perhaps a little younger than yours, I know how it goes when they tease each other. Pay attention to her emotional well being.

Good luck! Hug her for all of us.

JB

 

[Maz]

[user=1938]Pixelfixer[/user] wrote:

What I'm not sure about is this; what is the importance of knowing the type of Mycoplasma that is present, if any, if we know that Mycoplasma is at the root of the Arthritis, and the AP treatment will be the same regardless.

Also, Davit, when you mention “Get all the tests” which specific tests are you referring to? I'm aware of the Lyme and Mycoplasma tests, but what else should we consider? Or is that it?

 

Hi Steve,

There are really two schools of thought on testing for mycoplasma. The way Dr Brown used these tests was to do repeat testing over time to watch the titers coming down. To have a one-off test really doesn't tell a person much, except that they are one in possibly 6 billion folk in the world who carry mycoplasma. Point being, that every single infection we pick up in life will remain with us for life, so testing positive just tells us that we had the infection at one time. Brown's theory, however, was based on the premise that those with rheumatic disease had developed bacterial allergy…similar to any allergy. So, while some folk can be around hay with no problem, others will develop hayfever. Brown's goal, therefore, was to watch those titers come down with time, as it was his way to gauge to what extent the pathogen load was declining and, thus, how well the immune system was slowly being re-trained to deal with the pathogens. 

The practical reasons today for testing for mycoplasma are really as follows:

1. Some AP docs (like Dr S) will test for mycoplasma in order to code it as “infection” to get IVs covered by insurance for his patients…I think Kim may have already mentioned this (sorry for repeat, if so).

2. Some strains of mycoplasma that are known to cause human arthritides may respond better to certain antibiotics. This is laid out in the chart at the end of the Historical Protocol:

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-363

The practical reasons for not testing for mycoplasma are:

1. The tests are very expensive today and to keep re-testing over time would be a great financial burden.

2. There are hundreds of strains of mycoplasma, but not a great deal is known about every sub-type of the species and what role each may play in rheumatic disease. The standard myco tests run by TARCI only include a small number of the more common ones. If a patient's tests return negative for mycoplasma, are they to be led to think they don't have a chronic infection that may be causing their arthritis?

3. There are so many infections now known to cause rheumatic diseases in addition to mycoplasma, including (but not exclusive to), Lyme disease and it's coinfections, the chlamydias (trachomatis, pneumoniae, psittaci, etc), proteus mirabilis, yersinia or camphylobacter, klesbiella…the list is really endless and many of these have nothing to do with mycoplasma. To test for all the potentials and variables would be very challenging, not to mention costly. Here is a link to a retired AP doc's website in Maryland…he speaks specifically here of AS, but psoriatic arthritis is included in the spondylarthritide catagory:

http://www.drmirkin.com/joints/j103.htm

4. Re-infection – because mycoplasma are so prevalent, one test in time may not provide much information, as a person may be re-infected or infected by other, equally as virulent, types of mycoplasma later.

I'm sure my lists here is lacking and everyone is going to have their own reasons for why a particular test is important to them, as we are all unique, but it may provide a a few reasons why some folk feel strongly about myco testing and some don't.

No doubt the reason why Kim has suggested Lyme testing is because it is such a growing epidemic, all over the US, today. Just going by this forum and how many people are either coming here knowing they have Lyme and a rheumatic disease or finding out later that they had it all along is very significant. To figure this out early is a great advantage, because it will save time in determining treatment course and what type of physician is needed. The added benefit of seeing a Lyme doctor is that they will pull out the full antibiotic artillery to get their patients well again (including mycoplasma treatments). In uncomplicated cases, most folk do get well on low dose antibiotic therapy – even some who don't know they have Lyme. However, for those with more complicated coinfections, like the chlamydias, for instance, this requires a multi-pronged, combination approach. Lyme may be the triggering infection, but the really good LLMDs know they are dealing with a plethora of stealth infections that are not only Lyme-related, but also that some of sickest patients are likely dealing with pre-existent opportunitistic infections, like mycoplasma, viruses, cell-walled bacteria, etc.(because Lyme is so immunsuppressive).

So the real crux of the matter is that if, after reading all the material in the book and the website, one believes in infectious theory, then it's basically a given that some form of mycoplasma are going to be in the mix. They are community-acquired infections and pretty much everyone in the world is going to be carrying one type of another.

This is just my take on things, as a fellow patient, but as I reflect back – and this is just my personal perspective as everyone has to figure this out after reading all the material – I would say with some conviction that having some idea about which type of physician to see is probably more important, because AP treatments and Lyme treatments vary significantly. One can assume they have some type of mycoplasma right off the bat, but knowing if Lyme is in the mix or not may well save time and finances on the road back. 😉 That said, Lyme treatments are not cheap and many LLMDs work out of network, as they are offering a different standard of care. So knowing one has Lyme can also be a dual-edged sword. You can find AP docs who will take your insurance or you may be fortunate to be able to claim for out of network physicians. Although financial burden is a huge factor and difficult for any parent to navigate for their child, it's important to be alerted to this variable. Chronic Lyme is also extremely controversial now (lots of previous discussion threads on this) and so choosing this treatment must be done with this awarenes, too. We can provide info on the Lyme controversy, if you're interested.

Just some further ruminations to mull over, eh? :doh:

Peace, Maz

 

 

[Davit]

I'm sorry, it seems that I keep forgetting that If my doctor orders the tests that I get them, no questions, and they are free. One of the perks to living in the frozen north.

Davit.

[Roz]

Hi,

I don't think it's a case of being up North or being in or out of States. My Doc tests alot, in the last 2 years I have several different tests.

She orders tests everytime I have seened her.

Just a thought, but maybe Docs have different opinions and approaches?

Love, Roz

[Maz]

[user=1539]Davit[/user] wrote:

I'm sorry, it seems that I keep forgetting that If my doctor orders the tests that I get them, no questions, and they are free. One of the perks to living in the frozen north.

Hi Davit,

No need to apologise for anything! It's really great that this forum supports views from all angles, so everyone can really get a good overview of all the potentials. 😀

Hope you're keeping warm up in the cold north! I'm a Canook, too, born in Sask, so you would think I'd be used to freezing temps, but it's brass monkey weather here and I'm dreaming of tropical isles right now!

Peace, Maz

 

[Roz]

[user=27]Maz[/user] wrote:

[user=1539]Davit[/user] wrote:

I'm sorry, it seems that I keep forgetting that If my doctor orders the tests that I get them, no questions, and they are free. One of the perks to living in the frozen north.

Hi Davit,

No need to apologise for anything! It's really great that this forum supports views from all angles, so everyone can really get a good overview of all the potentials. 😀

Hope you're keeping warm up in the cold north! I'm a Canook, too, born in Sask, so you would think I'd be used to freezing temps, but it's brass monkey weather here and I'm dreaming of tropical isles right now!

Peace, Maz

Hi Maz,

I live in a tropical area, their are BUGS everywhere! You can't even open a window the bugs come thru or screens.

Hugs, Roz
 

[Roz]

[user=1758]Roz[/user] wrote:

[user=27]Maz[/user] wrote:

[user=1539]Davit[/user] wrote:

I'm sorry, it seems that I keep forgetting that If my doctor orders the tests that I get them, no questions, and they are free. One of the perks to living in the frozen north.

Hi Davit,

No need to apologise for anything! It's really great that this forum supports views from all angles, so everyone can really get a good overview of all the potentials. 😀

Hope you're keeping warm up in the cold north! I'm a Canook, too, born in Sask, so you would think I'd be used to freezing temps, but it's brass monkey weather here and I'm dreaming of tropical isles right now!

Peace, Maz

Hi Maz,

I live in a tropical area, their are BUGS everywhere! You can't even open a window the bugs come thru your screens.

Hugs, Roz
 

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