Lymes will it still work?

[Rosey UK]

Hi Maz

It sounds difficult for us to know if we have Lymes. And if thats the case would the AP work for both RA and Lymes as well as the other diseases we have AP treating?

thanks Maz

Rosemary X

[Maz]

[user=115]Rosey UK[/user] wrote:

It sounds difficult for us to know if we have Lymes. And if thats the case would the AP work for both RA and Lymes as well as the other diseases we have AP treating?

Hi Rosey….yes, very difficult and it's what lies at the root of this being such a political disease here in the US. I'm currently reading Pamela Weintraub's book, called “Cure Unknown – Behind the Lyme Epidemic.” I'm literally just on the chapter where she describes the testing methods and how poor these have been to date, including PCR. She says there are over 300 known strains of Lyme worldwide and that here in the US they only test for one! So, it's little wonder that these tests are notoriously inaccurate and that so many people literally slip under the radar. Then, of course, there are the coinfections of Lyme…..mycoplasma being one (mycoplasma fermentens, for instance), babesia, bartonella, ehrlichia…the list goes on.

You'll find a lot of information on these sites…there are more, but these have enough info to get started with researching:

http://www.lymeinfo.net/

http://turnthecorner.org/

http://lymediseaseassociation.org/

http://www.ilads.org/

You asked if AP would also work for Lyme Disease. Very good question and one for which I haven't found a simple answer, except by my own hard-earned experience. I wish there was one, but the experts don't know either. Lyme Literate physicians have a whole artillery that they aren't afraid to use to launch assault of this crafty organism and its 'tagalong friends.'  This is because the Lyme spirochete form of borrelia burgdorferi (Bb) is not the only problem. This is a spiral-shaped organism, much like the H Pylori stomach bug or syphyillis that are also spirochetal. It's generally been agreed in the past that syphillis (which is less common today) needs open-ended antibiotic treatment if not caught early. Those with H Pylori, in a similar way, sometimes find that they need much longer than the standard treatment to totally eradicate this infection, too, as it can make a sly return.

In the case of the Lyme spirochete, they know it morphs into many different forms, especially when under threat by antibiotics – the hardy, dormant cyst-form, the spheroplast L-Form and bio-films. Researchers who have the darkfield microscopes have observed these changes going on and they're well-documented. So, even if the standard tests were designed to look for the spirochete, they'd probably miss the bigger picture of these morphed stages unless observed by the trained eye, anyway. Not only this, it's also been well-documented (most recently in mice studies) that after the standard course of antibiotics are given to mice infected with Lyme, their blood tests negative at the end of treatment, but they still find spirochetes partying in the collagen-rich tissues.

What is known is that the coinfections and these various forms of the spirochete will often need different antibiotics and medications. The cyst form is particularly hard to eradicate and may need Flagyl or Plaquenil, for instance. It's believed this cyst form is actually what may be at the root of the waxing and waning symptoms experienced by Lyme patients….they get the standard course of antibiotics, the spirochete reverts to a dormant cyst to protect itself, the patient's symptoms seem to improve, antibiotics are stopped – hey, the patients is “cured,” right? – but then all the symptoms start returning again when the cysts morph back to spirochetes. The powers that be, here, call this a “post-Lyme syndrome” and that it's not necessary to retreat…or is untreatable….or is some other disease, like MS, RA, AS, FM, CFIDs…you get the picture. 😉

The bottom line is that LLMDS (Lyme Literate physicians) use a number of different antibiotics and medications in combination and usually at high, steady doses to treat Lyme and its coinfections. I did this for one year, myself. However, in cases where patients have rheumatoid manifestations of Lyme…like RA, which has been triggered by Lyme, the tissues of the patient tend to be hypersensitive, just as Dr Brown described. As such, the herxing can be unbearable and unremitting. So, each patient's treatment really has to be individualised. I'm not an expert or anything and this is pretty broad assumption on my part (definitely not the same in every case), but having read of the different manifestations of Lyme, a chronic fatigue patient doesn't seem to herx for as long as an RA patient, simply because the tissues infected are different. Joints, on the other hand, tend to be very hypersensitive, causing extreme pain, and this is why it can be so hard to discern the difference between a herx or a flare…they both present pretty similarly with increased inflammation. So, in my own case, though I battled for a year on various heavy duty protocols, I found my hypersensitivity levels just increasing. Even though my white blood count, immune complexes and blood levels for RF were coming down, my cardio CRP was still high.

The basic concept of treating Lyme is much the same as Dr Brown's in that the purpose of treating the infection is to elicit a herx, because a herx is a sign of die-off. However, the treatment modalities differ when it comes to dosing and dosing schedules. Dr Brown used low dose pulses to elicit controlled, more tolerable herxes and these were adjusted to meet individual needs and degree of hypersensitivity. As an RA patient with Lyme, I had come across a few people with similar diagnoses who found they could no longer tolerate the longterm, high doses of antibiotics prescribed for Lyme. So, I asked my LLMD if I could try AP and he agreed, fully admitting that each patient is different and even the experts don't have all the answers. Since beginning AP, I continue to improve (glacially, as John aptly described the process), but without the heavy herxing.

So, what is the answer? I can't say for sure…I just know that in my own experience the lower, pulsed doses used by Dr Brown are now working better for me. Although I also improved on the continuous high dosing of various antibiotics in combo, tolerating the higher doses was becoming a problem as my tissue hypersensitivity levels ramped up with time. If Lyme is suspect, though, my understanding is that it's important to rule out possible coinfections and, if one has them, to then make sure the protocol includes the requisite combo of meds needed to combat these.

Got off on a bit of a ramble there, but there just isn't an easy answer to this question. 😕 

Peace, Maz

 

[superperroRA]

As Maz said, the standard treatment of minocin for RA is probably very good but not sufficient for Lyme patients. It may need to be complemented with additional meds if you have co-infections. For example, Babesia treatment requires taking an anti-malarial (like Mepron or Malarone) concurrent with zithromax

[Rosey UK]

Thank You Maz

For the indepth message, and you are definatly an expert and so knowledgeable.

However it does appear that the ordinary patient that could have Lymes may never know and therefore could be missed. Thats a worry because people like me who have'nt been tested for anything other than RA testing, ANA ect. could simply struggle forever.

Thanks again Maz

PS : can I also thank Superperro for the excellent contribution much appreciated.

Thanks

Rosemary :headbang:

[Maz]

[user=115]Rosey UK[/user] wrote:

However it does appear that the ordinary patient that could have Lymes may never know and therefore could be missed. Thats a worry because people like me who have'nt been tested for anything other than RA testing, ANA ect. could simply struggle forever.

Hi Rosemary….yes, your observation is exactly what many Lyme experts believe to be happening.

By some estimates (which others think is on the conservative side), it's believed that for every patient who tests positive on standard testing and is then actually reported to the CDC (Center for Disease Control here in the US), there will be 9 Lyme cases missed….either people who never test positive by standand tests, are dismissed as having Lyme by their doctors or those who never make the connection that they may have Lyme.

So the stats are pretty staggering. What is very clear is that of those cases that are actually reported, the trend has been showing an upward, steep rise here in the US, in spite of very poor levels of reporting by physicians…either some states don't require physicians to report Lyme anymore or some just don't bother with the paperwork. So the true extent of Lyme may never be fully known….at least not until reliable testing methods are devised and made available.

Peace, Maz

[Rosemary Perth Aust.]

[user=115]Rosey UK[/user] wrote:

Hi Maz

It sounds difficult for us to know if we have Lymes. And if thats the case would the AP work for both RA and Lymes as well as the other diseases we have AP treating?

thanks Maz

Rosemary X

 

Brought me back from the dead as my friend stated to my Dr.  I have had to use combo though, and adding the Zith sure helped enormously.  10yrs on I am getting there.  Missing it in tests is a sad state of affairs, as delay in treatment makes it extremely difficult.  I was 22yrs without the help I needed so I guess I am fortunate I found Road Back eventually or I would not be here to tell the tale

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