To El - Re: Lyme cyst treatments

[Guest guest]

Hi El,

I'm sorry I didn't reply sooner. I get the daily digest and it can be

difficult to weed through all the many posts, as sometimes there are quite a few

old

replies tagged on to new ones. I thought it might have been Dolores who asked

about Lyme cyst treatments and replied to her…apologies for any confusion!!!

Dolores was probably scratching her head over that one and wondering if the

brain fog had set in again! LOL

El wrote:

>>>I too have Lyme's which I believed triggered RA. I am most interested in

your comment: This is why Lyme docs also employ cyst-busting medication

simultaneously with antibiotic therapy. If not too much trouble can you give me

examples of cyst busting meds? I would like to discuss with my Dr. on my next

visit. I too believe that AP is not enough; it's fabulous and gave me my life

back

but I suspect the Lyme's is still in there --- waiting----patiently.<<<

We're in the same boat, El, as I got Lyme sometime around Labor Day weekend

of '06 and, within 2 months, had highly seropositive, swift onset, severe RA.

No coincidence there…Lyme was uncovered in Lyme, CT (the state in which I

live)

in the mid-70s by Polly Murray, a mother who just happened to notice a

growing cluster of children in her neighborhood all coming down with JRA-like

symptoms!! It's one of the first things any physician worth his salt should

suspect,

especially in Lyme endemic areas or if someone presents with a Lyme rash

and/or tick bite (which not everyone gets or sees either - also all states have

reported cases of Lyme now). However, in spite of my two rashes and all the

classic early signs of Lyme, I tested equivocal on standard tests and was

refused

the standard 2 to 4 weeks of treatment. This delay in treating my early

symptoms was the undeniable direct cause of my RA.

If one suspects Lyme disease, most experienced Lymies and Lyme docs agree

that it's imperative to see a Lyme Literate physician (LLMD), because the

treatment combos and dosing vary significantly from AP. I'm currently on a low

dose

combo, as per Dr Brown, but went through my first year of various high dose

combinations (to ensure we hit all the coinfections) that included cyst-busters.

Cyst-busting medication is considered a given when one has Lyme, because where

there are spirochetes, there will be cystic forms. These medications include

Flagyl and Plaquenil. My memory fails me here, but I believe there are others

and they are often used in combination, but these are the ones that

immediately come to mind - see link to Dr B's Lyme treatment guidelines below.

Often, the Lyme patients who don't get well on tetracyclines or a penicillin

(usually ampicillin) alone will require other combinations, as they are likely

coinfected with organisms such as bartonella, babesia (actually a protozoan

that is also treated with Flagyl, Plaquenil, Mepron and Zith…babesia is one of

the most common coinfections), ehrlichia, tulemaria and various strains of

mycoplasma (such as myco fermentens). It's also worth noting that there are over

100 strains of borreliosis in the US, 300 worldwide, and some of these are

much more virulent than others. In fact, in the 90s, when they were developing a

vaccine for Lyme (which failed and caused " autoimmunity " ), they removed some

of the most significant bands from the Western Blot, saying these were

statistically insignificant, but were also found to be cross-reactive with the

vaccine! Of course, these also happen to include the band that tests for OSPA

(outer

surface protein A), which can cause some of the worst presentations of Lyme.

IGeneX Labs in CA actually includes these removed bands and uses more

sensitive testing methods, only requiring 2 bands for a positive (CDC requires 5

bands). However, any sensitivity on any band is said to indicate exposure to

Lyme

and a negative test should not exclude a diagnosis of Lyme (see example of

woman in MA below), if the clinical picture fits for Lyme.

By way of example, I spoke with a lady in MA recently, who has had RA since

the early 90s. She found a bite with a rash and her doctor told her it was a

spider bite and not to worry. Within a short span of time, she too started with

severe RA. As serendipity would have it, she bumped into Diane Aronson (RBF

Pres and in Brown's book) who told her about AP. She went out to Iowa, saw Dr S

and was treated for her RA quite successfully, though never fully found

remission and had some nagging residual probs. She then had a major health

crisis

which required taking immunosuppressive therapy. She got through this crisis,

but her RA returned with avengence and AP never quite got her back to her

previous state of well-being, was in quite a bit of pain and she felt she was

soon

going to need knee replacements. She also had a persistently stiff neck and

costochrondritis-like pain, both of which are classic for Lyme and babesia.

After

visiting a very experienced LLMD in NYC, he made a clinical diagnosis of

babesiosis and she was immediately put on quite heavy doses of Mepron, Flagyl

and

Plaquenil, in addition to Minocin. Within a couple of weeks, this lady's

symptoms were resolving and she reported that she hadn't felt this well in years

and her burning knee pain was pretty much gone, even though she is virtually

bone-on-bone! Her IgeneX labs came back a couple of weeks later and her Western

Blot was curiously negative for Lyme, but her babesiosis titer was

unquestionably positive. So, the logical inference is that this lady was never

given

adequate treatment for this other coinfection of Lyme. AP, in all likelihood,

drove back the borreliosis (though the cystic form was never treated), but

without

proper treatment of her coinfections, it was not likely that she would reach

full remission from her RA. She is now also receiving IVIG to boost immune

function and to help her to detox, as well as a number of other supportive oral

supps.

An open physician may be willing to prescribe the meds needed for Lyme, its

cystic form and coinfections, but may not understand the complexity of

individualized treatment. So, if Lyme is suspected, it's really a good idea to

see a

Lyme Literate physician. Here are Dr B's Lyme Treatment Guidelines, which have

been recently updated. These guidelines are considered to be the gold standard

for Lyme treatments. It's long, so worth printing out to read in its

entirety:

http://www.betterhealthguy.com/images/stories/PDF/LYMDXRX2008-October.pdf

Some other excellent resources include: www.cureunknown.com and highly

recommend watching the new movie documentary Under Our Skin:

www.underourskin.com

Hope this helps some, El.

Peace, Maz