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Posted 1/19/2012 11:30 PM (GMT 0)
Sorry for the post.  I have my first appt with a 'LLMD' this coming Tuesday.  I am having a very hard time researching and understanding lyme disease.  I get confused so easily and I have no one to talk to about this.  Kind of feel alone, but I'm sure that's normal.

Back in Aug of 2010, I was diagnosed with lupus only later to be undiagnosed.  My dentist took a saliva sample am put it under a microscope.  She found spirochetes (and I got to see them too).  I have no idea what spirochetes were.  The dentist told me to brush more often then the recommended 2 times, floss more often and use some mouthwash that she gave me to get rid of them.

Needless to say, I became increasingly ill over time.  I had numerous Western Blot tests done and all came back negative including the Igenex test.  However, the Igenex 'IFA' came back very positive.  Why do the Western Blots always come back negative?

Is IVIG therapy good for a person with lymes disease?  Or is it too risky?

I was trying to understand biofilms.  What medications are used to destroy biofilms besides Rifampin?

Again, any advice/info would be so appreciated.  I am so confused and could really use some insight or help.

Thank You!  

Posted 1/19/2012 11:54 PM (GMT 0)
Thank you for your help. The nurse for the lyme doc I am seeing this Tuesday said Rifampin is what's used to kill biofilms and maybe bartonella or babesia (do not remember which one). I was on that med for 3 weeks and it is one of the nastier medications because of its actual side effects.

For the last year, emotionally I've been nothing- literally. I wouldn't say I'm 'numb', but I definitely do not experience happiness, joy, anger, love, laughter... It's as if my personality (and all emotions) are locked in a box in my head and I cannot reach them (I know it sounds weird, but that's how I visualize it). It's all emotions (good and bad) along with passions, good feelings, etc. It's like all my neurotransmitters are so low or receptors are blocked, that I am just zombie. It's been about a year. I am on Cymbalta, Welbutrin, Adderall, Hydrocortisone, Cytomel, Tamerol and supplements/diet. Has anyone experienced this? Will it ever go away?
My psych doc said that 'it' was NOT all in my head and is more of a medical issues (sep from psych) because of all the physical problems, BEAM test results, etc.
Posted 1/19/2012 11:58 PM (GMT 0)

From a random website said...
Although there are different types of spirochetes, the one in the mouth is called Treponema Denticola. As an aside, the spirochete called Treponema Pallidum cause syphilis and another type of spirochete called Borellia Burgdorferei causes Lyme disease. All three types of spirochetes are bad guys. But in terms of periodontal microscopic assessment we are concerned when we find the spirochete Treponema Denticola, which has been shown to be associated with periodontal disease.

While the spirochete that causes Lyme can be found in all bodily fluids, the ones your dentist found are probably the Treponema Denticola mentioned above. So this is not a diagnosis of Lyme Disease.

If you feel your symptoms are consistent with Lyme Disease, you should contact a Lyme Literate Doctor. You can check out the symptoms lists in the "New to Lyme?" thread at the top of the forum. There is a lot of good information and helpful resources there.

An LLMD will be able to evaluate you clinically to see if you have Lyme, they can also rule some other things out. Please don't worry yourself about what treatment you need until you are under the care of a doctor.

Please let us know if we can help you find an LLMD.
Posted 1/20/2012 1:01 AM (GMT 0)
Yep- I'm pretty sure dental/gum disease spirochetes and syphillis are the two things that can cause cross-reactions in the Western blot. So the spirochetes in your mouth were probably not Lyme.

It's great you've found an LLMD already. I was on Rifampin for bartonella. But isn't hydrocortisone a steriod? Steroids should be avoided at all costs if you have lyme has they just feed the bacteria.

Your LLMD will likely give you some treatment recommendation. I don't know anything about IVIG
Posted 1/20/2012 1:06 AM (GMT 0)
I had no idea there were 3 kinds of spirochetes. I am just having a hard time researching and actually understanding everything (cog problems). And I have no idea what the Igenex Test Results mean besides positive IFA. I don't even think my one doc (treats lymes, but not specialty) knew how to read other results!

My IGeneX Test Results:

IFA, B Burgdorferi G/M/A was Positive >80

LYME IgM Western Blot
Igenex IGM Result Negative
CDC/NYS Result Negative
**39 kDa IND
**41 kDa +

LYME IgG Western Blot
Igenex IGM Result Negative
CDC/NYS Result Negative
**31 kDa IND
**34 kDa IND
**39 kDa IND
**41 kDa ++
58 kDa +

B. microti, IgM <20
B. microti, IgG <40

E. chaffeensis IgM <20
E. chaffeensis IgG <40

A. phagocytophilum IgM <20
A. phagocytophilum IgG <40

B. Henselae IgM <20
B. Henselae IgG <40

And in the last 8 weeks, I woke up with strange red marks on my stomach that are zig zag and NOT like stretch marks. And yesterday night, 2 more appeared on the other side of my stomach/belly button...
Posted 1/20/2012 1:37 AM (GMT 0)
Hydrocortisone is the 'medication' supplement for cortisol that adrenals and ACTH should be producing. It's not prednisone. I have no ACTH or adrenals- both literally burned out from illness. So, I have to take hydrocortisone replacement as my stress hormone. I guess without stress hormone I could go into coma or die. I'm praying once I get the lymes and biotoxin illness under control/care, my hormones will come back & I won't have to be on replacement hormones.

What's recommended if the person has no adrenals or severe adrenal deficiency??? Ugh!

What does 'adx' mean?
Posted 1/20/2012 1:52 AM (GMT 0)
i just wanted to tell you i love the name u picked out....lol......BustaRhymes
Posted 1/20/2012 3:18 AM (GMT 0)
I definitely agree that you should bring a list of all your questions - and check it twice! I do this and still manage to forget a thing or two - I can only imagine what I'd forget if I didn't write it all down and bring a list with me.

From what I know so far, doxycycline is effective against biofilms, as is cat's claw. I know other people use other things but those are the only two I'm familiar with in my own treatment.
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