LymeNet Flash: Can someone help me please?

This is topic Can someone help me please? in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/37067

Posted by lynliz (Member # 7171) on :

Hi, I just wanted to know a bit more about the whole band thing on our western blots.
i tested positive for lyme at igenex meeting all the criteria of the CDC, New york state, etc.
But my question is Can I have a different infection present that produces the same bands as for lyme? I have the important ones like 41 , 18, etc. The point is just wanted to know if perhaps there are other infections that will even produce these bands?
I suspect i became sick ten years ago from my dentist and am trying to figure out if he gave me lyme or If I don't have it but a jaw infection that has the same bands and all along I'm not treating myself right as i feel that I am non- responsive. What does a false positive mean exactly to be precise?
I mean I didn't produce all the antigens out of the air, so I wanted to know if it's possible that maybe I actually don't have lyme and am producing antigens in response to another infection? AND can a specialist be able to narrow things down? Also Gigi, could u email me, just wnated to hear about your dental stuff as It is eating me up!
thanksso much

Posted by Michelle M (Member # 7200) on :

Hi there. While you're correct that some non-Lyme bacteria can cause banding to appear on the Western blot (such as BAD gum disease), there are certain bands which are SO specific to borrelia burgdorferi that nothing else in the entire unverse can cause them. Really, NOTHING. You could have been exposed to all manner of germs and viruses imaginable but you still wouldn't get those bands without Lyme.

Now, someone will be along to post the link to the Western Blot explanation of individual bands so you can compare yours.

Do you have other Lyme symptoms? It's different for everyone, of course. You may not have all of 'em, but you'll likely recognize some of 'em.

I can't imagine how your dentist would have given you Lyme; I have never heard of that kind of transmission! (Exception being VERY friendly dentists :-) and I assume you don't mean that!) Much more likely is you being unaware of a tick bite, as many (perhaps half) of Lyme patients are unaware.

Lyme and cranial nerve involvement (all of which is over my head) can really do a number on teeth. You probably need to deal immediately with the teeth, but please don't put off the Lyme treatment either. It likely will NOT go away! A CDC positive Western Blot "ain't easy to come by" and is NOT accidental or happenstance, fer' sure!

Best of luck to you...

:-)

Michelle

Posted by lynliz (Member # 7171) on :

Hi Michelle,
thanks for the reply.
Yes I know that my WB are very positive I don't have them on me right now but I already researched and have the specific bands to lyme that only exist to lyme.
I Have taken treatment for a year now and have little improvement, ground zero.
I can't sleep anymore,
everyhitng is so unreal and I just don't want to live anymore. I also know I have another problem unrealted to lyme that is highly toxic and must be from my dentist because I have extreme facial bone swelling. it began with the jaw, then moved to the cheek bones, forehead, and skull now.... Most of my symptoms are related to these "attacks" and no one I know has them.
The days when the infections's the most toxic and my face swells then come along my other symptoms, dizziness, seizures, list can go on.
I am so scared. I am not sleeping at all tonight. My heart is being pulled on, weird , aches.
I don't see any light at the end of the tunnel, just want to disapear. Day after day after day and nothing!
I began to question my own lyme when i have all the bands because there's no hope

Posted by lynliz (Member # 7171) on :

Good that u mentioned not to quit the treatment , took a break today. My stomach can't take it. I just really think i'm at a point where I'm questioning everyhting.

Ok So could u or someone tell me what the bands actually mean? Each individual one?
Damn , I jsut don't get why i'm not geeting better, thought I was and then NADA

Posted by Michelle M (Member # 7200) on :

My goodness, LynnLiz. No wonder you are feeling discouraged. That sounds really miserable. Sounds like you have some kind of very bad jaw or bone infection to boot. That must be horribly painful.

Here is a good thread on Western Blot bands:
http://flash.lymenet.org/ubb/Forum1/HTML/026659.html

What does your LLMD recommend? What does the dentist think needs done? Do they have any ideas as to what might provide relief? Seems I have heard somewhere about some type of bone infection of the jaw related to Lyme but can't say for sure.

Please hang in there and hopefully someone who knows more than me will pop in here. Don't doubt your Western Blot, though -- it's possible to have that going on PLUS the jaw thing, both at once.

I'll pray you find relief soon.

Michelle

Posted by valymemom (Member # 7076) on :

liz

Here's a doctor's explanation of the testing.
http://www.drcharlescrist.com/testing.htm

I imagine many hear/recognize the fear, hurt and isolation that you face daily. I wish I could say the right words to give you relief and make you feel safe. Probably so many read your post and wished the same.

This board will help you. Already you know Gigi will help with all she knows. So there are friendly people to turn to.......in the middle of the night.

The journey sucks but come here and you won't be alone.

Posted by pattiecake (Member # 6424) on :

Liz,
can you tell us what you are being treated with? Are you seeing a LLMD (lyme literate md).

If you are being treated but NOT properly then you wont get better. And yes you may have multiple things going on.
pattiecake

Posted by lynliz (Member # 7171) on :

I was on biaxin and flagly 9 months, ketek and flagyl 4 months, and now zithro almost 1 month.
Real strong drugs.
I know there's somehting going on besides Lyme
If any of you can email me I'd tell you exactly.
anyways thaks for your repilies, another day with no sunshine, feeling sick like every day.

Posted by lynliz (Member # 7171) on :

oh, and thanks for the WB interpretations and also eberyone's kind words

Posted by riversinger (Member # 4851) on :

I'm very sorry to hear that you are feeling so badly. Looking at your list of medications, I notice that your doctor seems to have only given you combos of a macrolide with something for cyst busting.

While this kind of treatment has the potential to help, many people need treatment with antibiotics from a variety of classes or families, and you have not had that.

It also looks like you have not been checked for coinfections, or treated for them.

So, I can't tell you for sure that is the problem, but if the list you are giving is your only treatment, you could very well have Lyme, yet not respond to that particular treatment protocol.

Some example of other antibiots that are used just for Lyme are doxycycline, Minocycline, Ceftin, Omnicef, Bicillin, Amoxicillin, Rocephin, and lots more. They are all in different classes than the ones you have already taken.

------------------
Sonoma County Lyme Support
[email protected]

Posted by lynliz (Member # 7171) on :

Aren't macrolides supposed to be the most effective and if they don't work nothing does?

Posted by troutscout (Member # 3121) on :

It sounds like a trip to your dentist is warranted.

Also....don't give up now...it took me almost...a year to really notice a difference.

Trout

Posted by lynliz (Member # 7171) on :

Trout, it's been a year and two months,
real bumed out

detists are liars and thieves.
one big mess

Posted by riversinger (Member # 4851) on :

quote:
Originally posted by lynliz:

Aren't macrolides supposed to be the most effective and if they don't work nothing does?

NO! I don't know who told you that, but macrolides are seldomly effective by themselves, or even just with a drug like flagyl or tinidazole. You need another drug like a cephlasporin or a tetracycline.

If you have coinfections, you need a whole different type of therapy.

If your doctor is the one telling you this about the macrolides, then he needs to do some research. For you, I recommend you read Dr. Burrascano's protocol thoroughly, as a start, and then keep learning, so that you know what is in store for you.

Dr. Joseph J. Burrascano's Treatment Guidelines

------------------
Sonoma County Lyme Support
[email protected]

[This message has been edited by riversinger (edited 25 August 2005).]

Posted by bg (Member # 46416) on :

Lyn, copying/pasting Treepatrol's western blot explanation links here for you....

Welcome to this 24/7 educational & support group board, www.lymenet.org !
Here's TREEPATROL's and TINCUP'S combination newbie links.
http://flash.lymenet.org/ubb/Forum1/HTML/029917.html

Print off the links then check them off as you read as you could spend several months reading all of this. Treepatrol constantly adds new links as they become available from the members here.

print & read Dr. B's (a lyme literate MD) info first; you will come back to this often.

Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful!
http://www.lymeinfo.net/lymediseasetreatment.html

Some guidelines from Betty/others on using this message board:

* Do NOT use all caps when posting; it's hard on our eyes. But I know one of our members has macular degeneration, and all caps is what she can see & read so exceptions like this are acceptable for good reasons.

* We chronic, late-stage lymies can NOT read long paragraphs. So please limit your paragraphs to 6-8 lines max of text and double space between paragraphs.

* You can EDIT your text comments anytime. You can NOT edit your subject line so please make it as specific as possible instead of ``help, question'' etc. in order to have more readers/replies in trying to assist you. There are between 30-40 NEW/replies to post daily so we can't read all the posts on our limited time here...thanks for understanding.

* If you use the ``quote'' icon, please DELETE [B] bold at the beginning & ending of the quote. This makes it easier on our chronic, late-stage lyme eyes.

* To just reply without quoting, go to the top or bottom of screen in the black & white area to reply or post a new topic. Many of us couldn't see it when we 1st started posting. Thank you for helping us all out!
*
* LYME SYMPTOMS - http://www.lyme.org/otherdis/ld_symptoms.html
Bettyg, Iowa

Posted by lymeloco on :

I had swelling and pain on the high left cheek bone plus pain behing my left eye.

I was told it was the trigeminal nerve, and any slight cold draft...can set it off.

About thirty years ago, I would get extreme pain in my left ear.

I went to peridontist, orthodontist, and they made me a bite plane. I can't go without it at night!

I have a dual bite, and back then the orthodontist wanted to break my jaw and bring it forward. I said no way!!

I was a grinder and clencher. I was told by an e.n.t. doc that it was bruxism. I went because I was dizzy, and she said it was from that. That was way pre diagnosis for lyme!

I found warm moist compresses helped my cheek bone.

Hope you feel better soon!
My question is...how do you find out if it's gum infection?
Do exrays show infection?