ROXY68's thread

Roxy68 - First of all - I'd like to welcome you to our community.
I'm hoping you will see this thread that our Moderator, cd3764 started on your behalf.

Yes, it is Lyme Disease you have. You have symptoms consistent with Lyme Disease plus test results to back it up.

But, you are in the right place for support - we will help you with this.

What you should do now...is find a Lyme Literate MD and schedule an appointment. We can help you with that. Just start a new thread with the title: "Looking for LLMD in/near______" and fill in the blank with your city and State.

When you have some time, please read the thread titled "New to Lyme?..Start Here!" thread at the top of the page. So, while you can read that thread, we don't post in that thread. It's a packet of information that has been put together for the members to read.

Please feel free to ask any questions you have - we'll do our very best to answer them.

ILADS (International Lyme and Associated Diseases Society) guidelines state that diagnosing Lyme disease should be a 'clinical diagnosis' - which means the diagnosis should be based on symptom history, exposure to ticks, whether or not a tick was found on them, a bulls eye rash, and test results to back it up.

Having said that - even though the test results report may say 'negative' - you have some positives and Indeterminate bands on the Igenex. Indeterminate means it wasn't 'strong' enough to be a positive, but it is significant and should be counted as a positive.

Your previous lab corp - you had igm 23 and 41 show up - Band 23 is specific to Lyme disease.

A regular Dr. will not know how to interpret these results. That is why a LL Dr. is who you should be making an appointment with.

Thank you ladies for your feedback. im so worried i might be chasing a wrong diagnose while worsening. i have ruled out so many illnesses so far only hypothyroid possible called hashimotos, h pylory and tendonitis in many areas. i have gone to mayo clinic, seen over 20 doctors. sequence of events as follows.


dec 2013 tingling in face and rib pain.
march 2014 muscle pain in arms when hugged.
may 2014 traveling minor pains
august 2014 sudeen flushing and heat sensations
oct 2014 flu shot 10 days later neuropathy in feet
march 2015 severe tendonitis after taking flagyl for h pylori after 3 days on it.



im just so scared and in pain that no one finds answers for me. mayo clinic thinks it was the vaccine that gave me neuropathy, but i had all other symptoms before the vaccine. sorry that i continue to question lyme i know u have experience with lyme topic that will give me some comfort in pursuing lyme.
i took 21 days of doxy around sept 2014 due to the lab corp results at that time. but the flushing contiuned.

And than i had the flu vaccine in oct 2014 and the neuropathy set in. please help me make a decision regarding lyme. i would really appreciated.

igenex co infections for ehrlichiosis igg of 80 and igm <20. all other co infections neg. is that considered a possilbe co infection based o those results

Hi Roxy,
Welcome to our community. Let me explain about your test.

here is the site that I use to help interpret them:www.reocities.com/HotSprings/Oasis/6455/western-blot.txt You can go there to find supporting Pubmed articles showing what these bands represent.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There is only one on the over 300 known strains of Lyme that is considered Bb, ss. Nothing else will turn a Lyme specific band positive other than Lyme disease.


Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

For some reason, there seems to be some controversy over whether or not Band 31 is Lyme specific or not. These articles show that it is Lyme specific:

www.ncbi.nlm.nih.gov/pubmed/1520966


www.ncbi.nlm.nih.gov/pubmed/9440203


www.ncbi.nlm.nih.gov/pubmed/8406878


www.ncbi.nlm.nih.gov/pubmed/8005219


www.ncbi.nlm.nih.gov/pubmed/10030131


And more references can be found here:
www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

As for the positive/IND bands that showed up on your test and what they mean:
Bands 23- 25 indicate OspC (Outer Surface Protein "C") and are Lyme specific.

Band 31 indicates OspA (Outer Surface Protein "A") and is Lyme specific.

Band 39 indicates BmpA ( Bacterial Membrane Protein "A") and is Lyme specific.

So, considering you have tests showing that your body is making antibodies to these things, there simply is no way that you don't have Lyme. These bands cannot respond to anything but one very specific strain of Lyme, and there are over 100 different strains of Lyme in the US that cause human illness. As Girle said, most doctors just have no idea how to read these results.

To top it all off - you have Lyme symptoms. Any doctor that has been properly trained will see that you have Lyme - and maybe some co-infections as that is quite common- and will diagnose you and treat you for these infections.

It's quite common for things the body sees as stressful to make Lyme symptoms worse, and that includes vaccines, illnesses, vehicle accidents, family traumas and more.

If your dose of Doxy wasn't high enough (at least 400 mgs a day) and continued for at least 4 weeks, there's really no way that it was taken care of, and even that depends on how long you had been infected. 4 weeks is only enough if you have no symptoms.

Sorry to load you up with all of this, but you need to know what the truth really is. The learning curve is quite steep for these infections, although we are here to help.

I missed that you were in California, Rozy. That's where I got infected... over 45 years ago!! And as you can see, things haven't gotten any better there. California actually has a very large online Lyme informational site:
/www.lymedisease.org/

The elected officials in the state I live in now (Arkansas) are trying to say that Lyme isn't here either, yet I was reinfected with Lyme only last year (2014) - and I've been in contact with quite a few others that have been infected in my state as well.

Lyme is quite simply not only in every state of the US, it's in every Province in Canada, and across the world.

Roxy - I'm so sorry that you are feeling desperate...

I think your next step is to find a LLMD and schedule an appointment. The sooner you get diagnosed and start treatment, the better.

Roxy-My point was that Lyme is everywhere in the world. It doesn't matter where you live, you can have Lyme.

You ask if it can still be Lyme after this time frame. YES!. More importantly the longer you wait the more symptoms you will get. You need to find a Lyme Literate MD or ND ASAP. No other kind of doctor will know how to treat you properly to begin you on your path to wellness. Once you do that come back here and we will help you on that journey.

Roxy,
Send me an email with the area that you live in. You don't have to reveal the exact place you live, just the nearest big city, and I will base my search off of that. I have listing of some of the LLMD and I might have one listed near you.

As Girlie said, you need to get in and be properly evaluated and then get started on treatments. For what you can do today - get started changing your diet if you need to - no sugar (xylitol and stevia are okay though), no fast food, very little processed foods, lots of veggies - and start detoxing. We have a good list of detoxing ideas in the "New to Lyme?" thread and here are some more ideas: www.tiredoflyme.com/detox-methods.html

Just keep remembering that those tests are designed to only look for 1 out of over 100 that can cause illnesses, and that they aren't that accurate anyway. The Elisa misses 70% of those with Lyme and the Western Blot misses 50% of those with Lyme. False negatives are so common that a couple of states have passed laws that doctors must tell patients that a negative test result does NOT mean that you don't have Lyme disease!!

I didn't see that either, thank you for pointing that out, CD. And I agree with what CD is saying about detoxing.


Roxy, the other thing I have to ask is that you not use all caps in this forum. It does 2 things - it is considered yelling when online, and it hurts the eyes of some of us with neuro Lyme. We can't read your posts without being in pain - so please don't use all caps.

Roxy - You tested positive for ehrlichia? That is a co-infection of Lyme. Were you treated for it?

It's okay, Roxy - I figured you didn't know. Unless you have those vision issues, you couldn't know. When I'm answering an email or a post for someone with those issues, I also use a lot of extra spacing between lines and paragraphs - so if you see any posts that look funny like that, it's possible that the information offered is either to someone with those visual issues due to these infections or is information that those with those visual issues will find helpful.

No one can tell you how long treatment will take, or how long before you feel decent again - sorry!!! But there are just too many variables in treating these infections. A person has to find the protocol that their body works best with, and be able to detox well, plus there are usually co-conditions (infections, viruses, mold/fungal issues) gene mutations and other things that could complicate recovery.

In general, once you find a good protocol for you, and your body is detoxing well, most people will begin to feel improvements anywhere from a few weeks to a couple of months. You can feel relief from your symptoms sooner though, once you start figuring out how to get your body to detox well since the toxins that are released by these bacteria is what drives our symptoms. Lowering the level of toxins in our body will reduce the severity of the symptoms.