Pharmacist's comments

[Sierra]

I took an old bottle of methotrexate tablets as well as two vials of the liquid stuff to the pharmacy today for destruction. Because of the medicine's toxicity, it should never go in the trash. I've been off MTX for about 2 years now. The pharmacist was having a slow day and engaged me in conversation. He was surprised to hear that minocycline is used for theumatoid arthritis and that it has made me well. He asked if it was possible that I had Lyme instead of RA. I told him no, I had been tested for Lyme and it was negative. He said that the tests for Lyme are unreliable and that when people with arthritis get better on an antibiotic it's quite likely that the cause was Lyme. He got me thinking. What are the major differences between the two diseases? I do remember a nasty tick bite on my neck one summer followed some weeks later by a trip to the ER for chest pain. Diagnosis: pleurisy, inflammation of the lining of the lungs.

Sierra

P.S. It was an excellent feeling to get the methotrexate out of my house!

[John McDonald]

Sierra – There is near religion about what constitutes Lyme and what is RA. Since I think both are microbial, then both must be about the same. Lyme proponents are sure that theirs is from a spirochete (Borrelia) and ours, meaning RA, if infectious at all is from mycoplasmas. Lyme proponents have also searched for and found coinfections such as babesia or bartonella. These are parasites thought to be introduced with the bacteria. If you find these things then it is taken as proof that you have lyme. But to me Lyme is simply the first variety of arthritis that has been accepted to have a microbial cause.  Also, most of us have had tick bites, mosquito bites, fly bites and any other flying, walking or crawling animal innoculators. And Lyme and other rheumatic diseases or other Th1 respond to antibiotics in some combination, and often the same ones. At least one researcher is convinced that lyme is the final straw, that it took years of mycoplasma infection to reduce the immune systems so that borrelia could take hold, not as the primary, but as a co-infection just like the babesia. So from this lumper, it is the same thing.

[lynnie_sydney]

Sierra
My new AP doc and the naturopath she works with doubt my origional diagnosis of Palindromic RA. They suspect chronic Lyme and I am now being treated for at least 2 more pathogens. Latest I've heard is that they believe more insects than ticks are carriers, mosquitoes are indicated. Your pharmacist may be on the right track. I also hear that chronic Lyme is alot more widespread than most believe.

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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)

[Maz]

[user=128]Sierra[/user] wrote:

I told him no, I had been tested for Lyme and it was negative. He said that the tests for Lyme are unreliable and that when people with arthritis get better on an antibiotic it's quite likely that the cause was Lyme. He got me thinking. What are the major differences between the two diseases? I do remember a nasty tick bite on my neck one summer followed some weeks later by a trip to the ER for chest pain. Diagnosis: pleurisy, inflammation of the lining of the lungs.

 

Hi Sierra,

Well, your pharmacist is at least several steps ahead of most doctors who still rely solely on Lyme tests that are inaccurate in (some say more than) 60% of cases. He surely deserves the dude icon! :dude:

Most LLMDs agree….if you've had a tick exposure and experience symptoms, even years later, it's likely to be Lyme. They don't take any risks, knowing that this organism, like mycoplasma (which is also a coinfection of Lyme), is pleomorphic and can survive the onslaught of many years of antibiotics. In fact, recent studies in mice have shown that the spirochete survives in mice tissues even when it doesn't show up in blood serum testing after standard abx treatment. Having several forms (spirochete, cwd L-Form and cyst forms), this bug has a proclivity for collagen-rich tissue and hides in nerves, muscle, joints, skin and pretty can much burrow its way into every organ system. Similar to you, about a month after I got my Lyme rashes, I also had an almighty pneumonia-like infection.

Some Lyme experts have even gone so far as to say that 50% of all autoimmune manifestations have their origins in Lyme Disease and, in one study that my LLMD told me about, 100% of MS participants had spirochetes in their spinal fluid assays. Lida Mattman, a top Lyme researcher, also found 100% of Alzheimer patients to have postivie Bb cultures.  And, most Lyme experts agree that Bb strain virulance and genetic proclivity are both important variants that will determine how Lyme will manifest in an individual.

Doc Brown felt Lyme Disease important enough that he included a whole chapter on it in the Road Back, believing the study of this disease to have important ramifications in rheumatoid disease, as does Dr. Katherine M. Poehlmann in her book, The Infection Connection. One thing is clear, it's definitely more widespread than is currently being reported or acknowledged by the powers that be.

Having said this, John…cute little lumper that he is ;)…is probably on the money that ultimately there are any number of infectious agents that can trigger our diseases in addition to the pathogen load we accumulate during our lifetimes. Lyme for some, may just be the infectious trigger that tips the apple cart, as it was for me.

I think one instance in which it may be helpful to know if one has Lyme (bearing in mind that dx should be based on clinical presentation and history, even if tests are negative) is that down the road, if progress stalls, it may be due to one of the many coinfections associated with Lyme that have decided to make an appearance when the primary infection has been dampened. This is because specific coinfections often need other medications other than the tetracyclines. Interestingly, Doc Brown also acknowledged coinfections…he pinpointed strep as one such possible coinfection that may slow progress. And, a number of AP docs also recognize this, instituting a combination approach to treatment. The Marshall Protocol is one such approach that uses a combination of meds that are introduced in stages. Interestingly, when I showed the protocol that Dr. S in TN used to bring himself into remission from RA and for his patients (a combo of mino, flagyl and nystatin) to my LLMD, his reponse was…”Looks like he was treating himself for Lyme.” One thing that may be of relevance, too, is that most LLMDs agree that changing up the protocol on a regular basis is a pretty valuable tool in 'tricking' these organisms.

So, is it Lyme, mycoplasma or some other triggering infection? If we're lucky we'll test positive for one or the other, but ultimately, as John said, the antibiotics used are pretty much the same and, if we stall out or backtrack, not to lose hope and think AP isn't working….just to be aware that it may be time to rotate or add to our current antibiotic protocol. In many regards, AP is a largely intuition-based form of medicine, because each of us is so individual in our responses.

What's so great is how well you responded to mino to turn your RA around. So, regardless of whether it's Lyme or some other infection, you're right on track…and great news that you got to the point where you have had the pleasure to chuck out your mtx!  🙂 

Peace, Maz

[Susan LymeRA]

Sierra,

Trash the test.  It is worthless.

I already had a lyme diagnosis when I received a RA diagnosis.  I was very confused about the difference between “lyme arthritis” and “rheumatoid arthritis”.

A dentist who specializes in lyme disease put it best when he said:

“What is Rheumatoid Arthritis?  It isn't a bacteria and it isn't a virus.  It is just a name of a disorder wherein the body attacks itself, cause unknown.”

In other words. RA is nothing.  It is a label.  period.  So, of course, lyme or mycoplasmas or martians (ha-ha!) something is causing our condition of RA. 

How can “lyme arthritis” differ from RA?  Since testing for lyme is so poor, how can anyone say when the knee blows up that is lyme but when the hands or feet blow up that is not lyme?  How stupid and yet doctors say it all the time. 

I agree with John that lyme may not be the sole cause or even the most predominant cause of RA but in many cases, it is a big part of the picture and must be dealt with.

I test positive for lyme, babesia (much harder to kill than lyme), mycoplasmas, chlymadia pneumoniae, EBV, H. Pylori, tapeworms.  I'm a bacteria factory.:sick:

Susan

 

[froggy]

Maz,

 

Can you have lyme and have a high ccp and rf?

 

Froggy:blush:

[John McDonald]

 

Susan said:

In other words. RA is nothing.  It is a label.  period.  So, of course, lyme or mycoplasmas or martians (ha-ha!) something is causing our condition of RA. 

Maz said:

there are any number of infectious agents that can trigger our diseases in addition to the pathogen load we accumulate during our lifetimes. Lyme for some, may just be the infectious trigger …down the road, if progress stalls, it may be due to one of the many coinfections associated with Lyme

Susan makes the point beautifully. We humans, me too, have a desperate psychological demand to name our disease. Once we name it, or more accurately once doc is able to name it, then we imagine that he understands it and can treat it. But these rheumatic diseases, other than lyme disease, are idiopathic. That means the idiots don't know what cause it. They have simply named a collection of symptoms. For many years it was called Lyme Arthritis because it too was idiopathic. Now it is lyme disease and the medicos think they know what causes it. But the idiots (most of the AMA) also think they can cure it with a few week course of antibiotics. The AMA thinks that if symptoms continue after their short course of treatment then it must have morphed into an autoimmune disease in which your own body starts self destructing. Since they don't know what causes RA, they think it may be “triggered” by a foreign agent, e.g., a temporary infection. They never imagine that the disease is caused by a chronic, persistent intraphagocytic infection because they cannot culture these bacteria in a petri dish. These bacteria must have a living host to survive.

On this website we discuss a variety of rheumatic diseases but primarily Scleroderma, lupus, RA, lyme and various other arthritis types. But scan the web a bit and you will find AP variations for asthma, Lou Gherigs, chronic fatigue syndrome, sarcoidosis and many other chronic, idiopathic auto-immune diseases. As hard as it is to believe, there are worse things out there than RA or Palindromic A, much worse. Many times these other diagnosis started years earlier with (hard to believe) milder RA. I follow Trevor Marshall in believing that our particular diagnosis, that is, the arbitrary name for the not so arbitrary and very real collection of symptoms that we face, is a result of which particular bacterial species we have acquired, and in which order, and in which tissues. Once one specie has invaded our macrophages then our immune system is compromised and we are sitting ducks for an invasion new species of bacteria. The original infection may have been benign, symptom wise. Richie likes to cite that half the population or so have mycoplasma infections and they are healthy. But mycoplasmas live in white blood cells, like the HIV virus. They only way they can do that is by perverting the white cell's natural function to destroy the pathogen. The way they enter the macrophage is natural. The Macrophage discovers a foreign “not own body” substance, in this case a mycoplasma, and ingests it. Then it presents bits of the foreign substance on its surface and waits for a confirmation signal from a T helper 1 white blood cell (Th1 cell) that the substance should be destroyed, and then the white cell fuses the pathogen with a lysosome full of enzymes and acids, destroying the mycoplasma. But in the half of our population that have mycoplasmas this normal function has been perverted. Our M1 Abhrams tanks have been taken over by the enemy. They have set up house, decorated with curtains and are raising their young in our white cells. They can only do that if they have shut cleverly down the normal immune response. So is there any possiblity of a benign mycoplasma infection? I think not. It destroys our response to the next pathogen that may arrive.

So what is the difference between these Th1 diseases? The mix of species of pathogens and the tissues infected. One mycoplasma can lead to any number of co-infections including other mycoplasma species, including yeast infections, including babesia or anything else a tick or fly bite may bring. How to get well? By eliminating all the creatures from our macrophages so we have our immune defenses back again.

Is this view correct? Who knows for sure. PCR style genetic testing could easily set this topic to rest for a few million dollars and a half year's effort or so, but we have almost, but not quite yet caught the attention of funding agencies. It will happen within the next decade and medicine will be revolutionized. For now it is up to us pioneers to wonder why or to know why an autoimmune disease responds beautifully to antibiotics. Duh you doctors! It's microbial.

 

[Maz]

[user=351]froggy[/user] wrote:

Can you have lyme and have a high ccp and rf?

 

 

Hi Froggy (cute user name!),

As I understand it (and I'm just a patient, too, learning as I go), RF can be elevated in any number of conditions and isn't only specific to RA. It is well documented that it can be elevated in Lyme Disease, as well as being elevated in about 15 other conditions. As for anti-CCP, this is a newer test and 'said' to be more specific to RA.

In answer to your question….after I tested a very high positive to both RF and anti-CCP, I asked my Lyme doc if this meant I couldn't have Lyme, after all, because this test was supposed to be so specific to RA. His response was that I had both….but also added quickly that because Lyme had been the tripwire for me, he felt sure that once the Lyme was controlled that the RA would follow suit and remit. In other words, his belief is that an infection (Lyme) caused my RA, which could be brought into remission, if treated appropriately with long term antibiotics. In effect, he was saying the same thing that Dr Brown said about rheumatoid disease in The Road Back and had about 80% success with his treatments, many years before the anti-CCP test was around. 😉

Question is…is it important to know “What infection(s)? Although in many cases it's probably not important, as they mostly seem to respond to the tetracyclines and/or macrolids, in some instances it may be relevant to know what infection we're dealing with, as Susan said above. Babesia, for instance, is a coinfection of Lyme that requires an antiprotozoal and, because the Lyme spirochete can ball up into a cyst and can go dormant for many years, only to reappear later down the line, the cyst form of Lyme may require a “cystbuster”, like the antimalarial, plaquenil.

If you're interested, there was a discussion thread on anti-CCP a bit further back, a week or so ago. A couple of people were able to confirm that with AP their anti-CCP decreased significantly over time, as did RF.  This makes good sense if one is treating an infectious cause. Both the RF and anti-CCP tests measure antibodies and antibodies are produced by the body in response to infection.

So, the short answer to your question is that according to my Lyme doc….yes, RF and anti-CCP can be elevated in Lyme, because his belief is that RA is caused by an infection and Lyme is known to be “The Second Great Imitator” (the first Great Imitator being syphillis, also a spirochete). What I've personally found, in my own case and as I've watched my bloodmarkers over time, is that RF seems to be more reflective of my current physical status (how I'm feeling around the day of the blood draw) and the anti-CCP has been a bit slower to respond to my overall improvement. Others may find otherwise, though, because we're all so unique.

Apologies for the wordiness….;)

Peace, Maz

 

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