I did a really dumb thing!

[chriscast]

Hi Maz,

Is there any other test that I should look into if I'm investigating Lymes, besides the IGeneX? I can't believe they would use something that misses 50% of cases!

Thanks much!

Chris
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[Maz]

[user=2416]chriscast[/user] wrote:

Is there any other test that I should look into if I'm investigating Lymes, besides the IGeneX? I can't believe they would use something that misses 50% of cases!

 

Hi Chris,

Nice to meet you and welcome to the RBF forum!

I agree…I can't believe they'd use a test with only 50% specificity for Lyme, but they do. Actually the standard tests are the ELISA, first, then the Western Blot to confirm….IF the ELISA is positive. Trouble is, the ELISA is such a poor test that most people never get to the second-tier western blot test stage, like me. In spite of two bulls-eye rashes, I tested equivocal on ELISA (which is as good as a negative) and my GP didn't think it was necessary to use the western blot, which was very wrong. A bulls-eye = Lyme, no matter what the tests say, but I didn't know that at the time. Within 2 months, I had full on RA. Only 50% of folk get the bulls-eye….some say fewer, so what about these poor people? I guess they just get missed altogether and diagnosed with something else. That seems to happen a lot around here. 🙁

IGeneX Western Blot testing is pretty much the gold standard amongst LLMDs, as it's considered more sensitive than the standard tests and includes bands that were removed (Bands 31 and 34) when they creating the LymeRix vaccine. They had to pull the vaccine as it was actually causing AI diseases, like RA. However, they never returned these bands to the standard test, saying their were statistically insignificant. The irony here is that the antibody bands were specific enough in the first place to create a vaccine! If you want to learn more about this fiasco, it's worth reading Pam Weintraub's book, Cure Unknown. It's considered the new Lyme bible and will make your hair curl. She is a medical editor for Discover Magazine and her whole family were struck by Lyme…with only one family member getting a positive standard test. You can read the first few chapters, here:

http://www.cureunknown.com

ILADs has some info on all this, if you want to research further, too, in their Guidelines:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

Also, at this link, you can watch presentations given by Lyme docs from ILADs, independent researchers of Lyme and IDSA docs, who sit on the other side of the chronic Lyme debate. Just watching a few of these will give you an idea of how hotly contentious this situation has become (my doc is Dr P):

http://lymewebcast.idsociety.org/

It is still worth getting the standard tests run, first, because they are covered by insurance, but if negative or equivocal, they should not be taken as conclusive of no Lyme. Lyme is largely a clinical diagnosis, based on patient history and symptoms and a positive test is just a nice confirmation of what a Lyme expert already determines in the way of diagnosis.

Hope these resources help, Chris.

Peace, Maz

[chriscast]

Hi Maz,

Thank you so much for taking the time to write to me.  Truly what a blessing. 

I'm 41 now, but in my mid 30's I started having strange problems.  It all started when the doc found a high sed rate.  I began having very sore muscles, and slight joint pain all over.  Then came high muscle enzymes, yet only borderline ANA.  It all lasted about a year and a half and everything except the tiredness went away.  I was never diagnosed with anything except a possible myositis. 

While in the midst of all this, I started looking for explanations.  I came upon the possibility of Lymes.  And lo and behold, after finding out about it, I remembered a strange bullseye rash on the back of my knee while up at the cabin about a year before.   I remember thinking it was strange looking, and didn't remember hitting it–how could I have on the back of my knee–but Lymes didn't dawn on me then. 

After getting the inflammation and soreness, it just seemed to fit.  So, I asked for a Lymes test, and it was negative.  I had three.  All negative. 

Then for years I had a recurring bulls-eye rash that looked different, but none-the-less was a scaly ring with purple inside, with no other symptoms.

Recently, my symptoms and more are back.  I was just in to see my general practitioner for swelling in my feet, very sore, and some in my fingers.  Muscle soreness as well.  My blood markers were slightly elevated for SED and now for the first time RA.  Classic for RA or Lupus, especially since I just had a child.  I will get to a Rheumatologist. 

I'm not sure if this type of progression could be Lymes, but I cannot get that rash on the back of my knee out of my mind. 

If you have any other resources that you find a must as I start this journey, please send them my way. 

And again, a sincere heartfelt thank you for your help.  It's profound to help another the way you do.  May all the good you do come back to you and more. 

~Chris

[Maz]

[user=2416]chriscast[/user] wrote:

Recently, my symptoms and more are back.  I was just in to see my general practitioner for swelling in my feet, very sore, and some in my fingers.  Muscle soreness as well.  My blood markers were slightly elevated for SED and now for the first time RA.  Classic for RA or Lupus, especially since I just had a child.  I will get to a Rheumatologist. 

I'm not sure if this type of progression could be Lymes, but I cannot get that rash on the back of my knee out of my mind. 

Hi Chris,

Thank you for your kind words, but it really is a pleasure. As you read more about Lyme, you will begin to see the insanity that surrounds this controversial illness, mostly due to inadequate testing and the criminal activities of the IDSA (Infectious Diseases Society of America). Atty Gen Blumenthal of CT took the IDSA to court over their guidelines, finding them to have serious conflicts of interest. You can read about it here at this govt link:

http://www.ct.gov/ag/cwp/view.asp?a=2795&q=414284

The next quarterly RBF eBulletin will be covering this controversy, so if you haven't yet subscribed, you can do so on the main home page of the RBF site: http://www.roadback.org Should be going out next week and you just have to submit your email for a free copy to be sent you.

If you let me know where you are, Chris, I can send you a listing of Lyme Literate physicians for your state or nearest ones to you, if travel is an option and your state is thin on the ground for LLMDs (Lyme Literate MDs). Unfortunately, rheumies are not very au fait with Lyme and you are likely to be prescribed immunosuppressive therapies which would only make you sicker. With no immune system to fight back, the bugs just run rampant.

A Lyme rash (aka erythema migrains or EM rash) is classic for Lyme, regardless of your negative tests. Lyme also waxes and wanes, so your presentation of having a period of remission but coming back with avengence is also quite common. Late-disseminated EM rashes can also occur. Sometimes they just appear and linger for years. There is a member here, called Trudi, who can share about her late rash. You might like to watch this video to understand how Lyme can trigger AI diseases, like RA and Lupus.

http://envita.com/sections/disease/lyme/default.aspx

The reason it's important to see a LLMD is because more than just borreliosis (Lyme) is passed by ticks. Usually, when we get this sick, we're multiply coinfected, as the video describes.

So sorry you're in so much pain. I know how you feel, as do many others here. An unfortunate aside to all this Lyme business is that the ILADs LLMDs who are willing to treat us longterm are offering a second standard of care – they believe in chronic Lyme, whereas the mainstream are adhering to the IDSA's restrictive guidelines. However, what this means is that LLMDs mostly have to work out-of-network, because insurance companies like the IDSA guidelines, which say it's easy to diagnose and treat. If you have PPO type insurance, though, you should be able to claim back a portion for out-of-network consults.

Let us know if we can send you a LLMD list to get going, Chris.

Peace, Maz

[Jeni]

Hi Steve,

I just want to say that you're right! I have to remember not to be so hard on myself!

Thanks,

Jeni

[chriscast]

Hi Maz,

I am in Minnesota–tick country!  Thanks in advance for the list and all you help.

Chris

[Maz]

[user=2416]chriscast[/user] wrote:

I am in Minnesota–tick country!  Thanks in advance for the list and all you help.

Hi Chris,

To retrieve your LLMD list, just look top right of this page and click where it will say, “You have 1 new message.”

All the best in finding the best doc for you!

Peace, Maz

[Trudi]

[user=2416]chriscast[/user] wrote:

May all the good you do come back to you and more. 

Chris–

Very well said.  I second this Maz–you are a fountain of information and your compassion is soothing to the soul–

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?

[kittrasis]

I am very sorry for your troubles.  In your case I wouldn't call this “whining.”  You are weathering serious issues.  Give yourself a break.

I tried Wobenzym.  At first it seemed to help a lot but then it didn't work as much after a few weeks.  I might try it again on an occasional basis.  Maybe that's the best way to go.

Good luck.  Things will get better.

[Author]

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