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[user=851]tbird2340[/user] wrote:
So regarding Lyme.. If I do indeed have Lyme does that mean I don't actually have RA? That the lyme disease is causing the joint pain or causing the RA?
Is lyme treatment indefinite or is it possible to be “cured” ?
Tom, I asked the same question to my LLMD when I first got sick. Do I have Lyme or RA? He said it was both, but that the Lyme and coinfections triggered my RA, much as Brown thought that mycoplasma triggered RA. It's the same rationale, just a different mix of pathogens (though various strains of mycoplasma can also be passed by ticks, like mycoplasma fermentens, which can cause RA). So your treatment won't be much different from AP…tetracyclines are still used. It's just that combinations of antibiotics are used in addition and usually in different doses.
Trudi is right that once you have Lyme, you will always have it…much like when you get chicken pox as a kid and the virus stays in your body, possibly to manifest as shingles later in life. This is true with any infection, which is actually a good thing in most people, because a sterile body would not recognize invaders. The hope with Lyme treatments is to lower the pathogen load and strengthen the immune system enough so that it can handle what remains in the body.
Here is a good video link that shows how borreliosis causes “autoimmunity.” It's not “autoimmunity” in the sense that the cause is unknown (idiopathic). It actually is a self-attack caused by the spirochetes that drill deep into the tissues and hide in different forms within the body's cells, but leaves a comtrail of toxins spread over our tissues in their wake which tricks the immune cells into attacking these tissues.
http://www.envita.com/sections/disease/lyme/default.aspx
Peace, Maz
Maz, that video was awesome and really helped!! Thanks!!
Two questions..
1. He mentioned something about Lyme possibly being sexually transmitted. Should I be worried about passing this to my wife?
2. The three treatment plans.. The third one being the one what works.. I'm guessing not all LLMD's follow the 3rd treatment plan?
[user=851]tbird2340[/user] wrote:
Maz, that video was awesome and really helped!! Thanks!!
Two questions..
1. He mentioned something about Lyme possibly being sexually transmitted. Should I be worried about passing this to my wife?
2. The three treatment plans.. The third one being the one what works.. I'm guessing not all LLMD's follow the 3rd treatment plan?
Tom, Lyme is a spirochete, like syphilis, so it makes sense that it would be passed sexually between partners. Thing is, the majority of folk with Lyme are walking around just fine with it and may never even know they have it. If they do, a short course of antibiotics will probably knock it out. It's the few of us, in the minority, who have certain genetic markers or really compromised immunity who get these AI problems…not everyone will. It's something you can ask a LLMD when you go, but my guess is that they will tell you that unless your wife is showing any symptoms, then it's not necessary to treat.
In the movie, Under Our Skin, this subject was touched on lightly…one of the main people covered in the documentary, Mandy, was newly married and had severe neuro Lyme with seizure disorders, tremors, etc…she was seeing Dr J (new offices in Washington) who brought her to remission…but her new husband briefly mentioned how he was left wondering with every ache and pain he was getting whether he may also have contracted it. Thing is, we're all living in a sea of pathogens…my LLMD once said he reckons probably everyone in CT is infected with Lyme and will never know it. They did a cloth drag of school yards in our county a short while ago and the stats of infected ticks they picked up were astonishing…not just with Lyme, but also coinfections. Our kids are playing in those playgrounds and playing fields. So, I don't think it's anything to panic or worry unnecessarily about. They're everywhere, but most folk are okay with it or do well with short courses of antibiotics. It's us schmucks who drew the short stick. 🙁
Treatment plans vary enormously between LLMDs. This is why it's important to know what you want (orals, IVs, supportive adjuncts, etc) and then find a good doc with whom you can partner well and stick with it. The Envita clinic is a Lyme treating clinic in AZ and they are pretty expensive. I think folk go there, stay in local hotels and go through a whole program of treatments over a course of time. I would think if you're extremely sick…on death's doorstep with Lyme…then this is a one-stop Lyme treatment place. But, yes…not all LLMDs follow the Envita plan. Each will have a different MO and some may have similar plans to Envita…some may be purely allopathic. I would think that in NYC, Dr H and Dr B would probably work similarly to the Envita treatment plan, from what I've heard of them, taking a more holistic approach, using a wide array of antibiotics, naturopathy and other adjuncts.
Peace, Maz
Tom,
I can understand your hesitance to embark on another protocol. AP here is pretty simple minocin or doxy occasionally mixed in with zithromax or clindamycin. I remember when I first looked at some of the Lyme sites it just seemed so overwhelming with the different co-infections and some many protocols. The good news is it can open up another avenue of treatment. Lyme treatment has been very successful for my husband so we have not regretted our decision to pursue it.
ARGH!!! I just called Dr. H from Igenex and he said the results are pretty much negative..
Now I don't know what the heck to do..
[user=851]tbird2340[/user] wrote:
ARGH!!! I just called Dr. H from Igenex and he said the results are pretty much negative..
Now I don't know what the heck to do..
Well, this may be a good thing and there's a few ways of looking at all this. That is, if you don't have Lyme, then it should be a lot less complicated to seek treatment with an AP doc, like Dr W in NJ, who may be able to add a second antibiotic to your protocol and possibly offer IV clindy therapy.
The other way of looking at this is that it is one test that is just a moment in time and it can take some folk years to produce enough antibody to test, so…yes, you are negative by IGeneX and CDC criteria….but, if you want to get the opinion of a good LLMD before moving fwd, you could also call one of the docs in Hermitage, PA, or both and tell them your IGeneX results (or FAX them) and ask if they would recommend treatment based on those results and your symptoms. Lyme is, after all, a clinical diagnosis and no test can definitively rule it out…it's just a nice confirmation if you have a positive result. 😕
Another way to look at it is that LLMDs offer a broader range of antibiotic therapy….and these guys are closer than Dr W in NJ. So, whether it's Lyme or not and they are willing to take you on as a patient, you will have a greater range of anti-microbial therapy at your disposal and a closer doc to work with. Just a thought.
None of this is black or white, unfortunately. Each of us just has to go by gut instincts on all this and researching the heck out of all the possibilites.
Sorry, Tom, that you felt your talk wasn't all that productive with Dr H at IGeneX. I'm quite surprised he was so cut and dried about it all, as nothing is cut and dried about Lyme, unfortunately. 🙁
Peace, Maz
[user=851]tbird2340[/user] wrote:
ARGH!!! I just called Dr. H from Igenex and he said the results are pretty much negative..
Now I don't know what the heck to do..
Is that like being a little bit pregnant? If I were in your shoes, Tom, I'd ask a LLMD for further advice because I think you'll get a different answer than you got from Dr. H. at Igenex. You did show something on some significant bands, indicating exposure.
Take care…..kim
Yea, thanks for the replies ladies.. I will be calling Dr S (in Hermitage) today to hopefully get an appt.
[user=40]Kim[/user] wrote:
Is that like being a little bit pregnant? If I were in your shoes, Tom, I'd ask a LLMD for further advice because I think you'll get a different answer than you got from Dr. H. at Igenex.
Kim–
I love your analogy :roll-laugh:! I agree with you and Maz–follow the Lyme trail–
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Tom,
I'm sorry to chime in a little late here but, I'm working with one hand this week–have my heplock in for iv's. (you should see me type–hysterical:D)
I agree that you should see an LLMD because even though your test says negative, you may have clinical symptoms that warrant other antibiotics. I don't have RA but, I do have Lyme triggered Scleroderma, and didn't have overwhelming evidence of Lyme on my Igenex test. I believe that addressing multiple infections will serve you well in the long run, and it's better to find out what your strategy should be earlier than later. You're such a bright man, I just know you'll figure it all out.
Let us know what you decide to do–we're all here to support your decision.
Maria
[user=851]tbird2340[/user] wrote:
Got an appt for Dr. S (LLMD) for April 28th.. We'll see what he says!
YEAH!! 🙂 that is so great!
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=851]tbird2340[/user] wrote:
Got an appt for Dr. S (LLMD) for April 28th.. We'll see what he says!
Good boy, Tom! 😀 Of course you probably did it just to get us off your case, right? :roll-laugh:
Take care….kim
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