End of My Rope - looking for LLMD in Illinois or nearby

Roxie60 said...
Well Friday aft I heard fr Dr's nurse. Told to reduce CEFTIN to 1x/d (250mg). I have been having side effects fr the CEFTIN (I know that doesn't happen, ben there done that have the t-shirt to prove it). Wants me to take vit C and Magnessium. End of call. They don't get the anxiety I am experiencing becuase my 'Drs' dont share my sense off urgency. All systems seem to be failing and all I get is adjust your meds/vits and see u in 3 months. MAddening.

It is maddening. When I recently became Ill again after 2years of feeling okay it feels like all my systems were shutting down too. I am spending a ton of money on supplements and pain medicine and live perfectly yet I'm sick as hell. Most Doctors are jerkoffs who are book smart. The last thing they cured was polio. They practice medicine, practice being the operative word. I feel your pain, life sucks so much these days. I'm in my prime and lay around exhausted and worried.

Hi Roxie, I may have the solution for you if you are ready. I am sure you will try anything at this point, which is great because I know this will help you. I do not know if you are familiar with kinesiology, also known as muscle testing. This is a practice when a professional asks your body (subconscience) what is wrong and what you need in order to heal. I know a man who healed my Lyme disease. I was born with Lyme and finally got rid of it at the age of 24. This is the first time I have energy and that I am happy. If you would like more info on the person I worked with, he does over the phone meetings, please email me and I will give it to you. danielledaniel28@yahoo.com

Ok I understand what you are saying. I just wanted to get the info out there because this guy is amazing. I mean I had Lyme for 24 years and I felt like crap my entire life, and now for the first time I am loving life and I am so happy. But I appologize for stepping on anyones toes, and I will not mention him again, just my own awesome experiences ;-) Thanks for letting me know

thanks everyone for your responses and williningness to help. I am quite down right now and trying to retain my energy to goto work. Memory and focus not at best right now. Will be back just too down and hurting to do much of anything. I will snap out of it, I have to..

Wow, I was researching lyme on Google and selected this link. I started reading the first post and said to myself that this sounds so much like me but said person was 51 yrs old. On my phone I did not see the user name or post date. By the time I got to end of post I was so startled at how much this sounded like my story so looked at username. To my shock I found out it was me. I honestly don't remember writing all these posts or researching lyme. I am researching lyme again since had a cd57 test recently and it was 55. Will post my recent igenex results later. This has been a bizarre experience. I do remember using Epson salts and peroxide. Will be back., I hope.

Hi Traveler, thank you for the welcome back. It was so disorienting to read my own post (not knowing it was mine) from over two years ago. I knew I had asked my doctors in the past to test me for Lyme but was always told no, it wasn't necessary since I live in central IL, even told people in our part of country dont get Lyme (which I thought was silly at the time since I have been to at least 42 states and foreign countries and hiked in most - good grief its the 21st century and we have a mobile society - I thought how dark ages of doctors to suggest people in IL cant get Lyme).

You are correct, I still do not have a LLMD. I let my doctors lead me in other directions (reumatology, neurology, endocrinology). However something changed this past October, my GP suggested a test to add to a list of blood tests already ordered - CD8-CD57 NK. Later I found out this was a screen for Lyme. I asked her why all of a sudden is she now agreeing to test for Lyme - she said new information has come out saying Lyme is more prevalent then previously thought for IL (I dont know what she was referring to). My CD57 was 55 LOW so she then suggested I get IGenex test.

I have been researching Lyme again, CD57 and IGenex testing and found many confusing posts, some seem to imply that even though my test result is overall negative that I still might have Lyme. My doctor adits she knows nothing about Lyme but has decided once again I dont have it. The results are posted below from another post I made at another forum. I appreciate feedback from others who tested negative on IGenex but were still diagnosed with Lyme, was it an LLMD? Did you get better with treatment. I suspect I have had this for many years if I really have it. Wsa thinking about doing an antibiotic challenge and retesting but the IGenex test is expensive. I think a LLMD would have known that and done the challenge before ordering the IGENex test, oh well.

Seems to be a lot of expereince here with IGenex results. I just got my IGenex results and my GP has declared I have no Lyme. Just wanted to know what knowledgeable folks here think. IT seems from the research I have done that it is still possible I might have Lyme. I have been sick and getting progressively more sick since 2005-2006. Finally lost my career of 20 years. Just want to know if I should just move on and accept that whatever is wrong is not Lyme.

There are apparently some Lyme doctors that consider IND (Indeterminate as significant since if it were a negative result it would have said negative and not IND). Also in bold uppercase asterisked print on the IGenex results it says the following (doctor did not comment on this)

****PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE**** THEREFORE, WE RECOMMEND TESTING WITH ANOTHER METHOD AND/OR RETEST IN 4-6 WEEKS.

Band Intensity:

Negative (-) no band detected

Indeterminate (IND) band present with intensity < than standard

Positive (1+ - 4+) band present at intensity > than standard

IFA, B Burgdorferi G/M/A <40 Negative

Lyme IgM Western Blot

IGenex IGM result - Negative

CDC/NYS result - Negative

18 kDa -

**23-25 kDa -

28 kDa -

30 kDa -

** 31 kDa IND

** 34 kDa IND

** 39 kDa -

** 41 kDa IND

45 kDa -

58 kDa -

66 kDa -

**83-93 kDa +

Lyme IgG Western Blot

IGenex IGM result - Negative

CDC/NYS result - Negative

18 kDa -

**23-25 kDa -

28 kDa -

30 kDa -

** 31 kDa -

** 34 kDa -

** 39 kDa -

** 41 kDa +

45 kDa -

58 kDa -

66 kDa -

**83-93 kDa -

Multiplex Borrelia Burgdorferi Serum

Genomic Bb - Negative

Plasmid Bb - Negative

Multiplex Borrelia Burgdorferi Whole Blood

Genomic Bb - Negative

Plasmid Bb - Negative

In my spirit I have been thinking for some time this might be Lyme even though dont remember a tick (I have had lots of bugs bites over the years) but now even more so since symps have been getting worse in some cases and seem to be involving other systems. I am in less pain lately so I am greatful for that but these symps just seem to come and go hourly, daily, weekly, monthly.

Thank you for your response. I am looking for an LLMD to seeif they will review my records/labs and agree with our interpretation. My concer is I have become so jaded with doctors I am cynical and am unsure if every LLMD says everyone they see has Lyme. The ol if the LLMD is a hammer every patient they see is a Lyme nail.

Has anyone here with chronic Lyme who had initially tested negative for Lyme done the 'antibiotic challenge' and retested? Did your test results change from NEG to POS? Did more bands show up POS?

TIA

The way I feel is just based on years of experiences, some abusive, with various doctors and my confidence has been destroyed. It is not a feeling I have about LLMDs, just doctors in general. But I know if I am to get better I have to try again.

This past year I had nearly decided to stop seeing doctors but there is something stronger, the desire to get ones life back that will push me to try one more time with a LLMD, I'm just praying it is someone who will approach it as team effort and not with a condescending attitude.

Just kinda burned out on the medical model.....please dont think it is specific to LLMDs. I'm sure they are use to getting patients that have been through the medical guantlet before finally finding help to dx and treat Lyme.

Oh, I and most others here can certainly understand how you are feeling!! I even had one doc really lecture and yell at me in his office because I wouldn't start MS treatments that day - even though I was certain that I didn't fit the MS description!!

I don't believe I ever did post my results in a thread- I'd have to really go digging to find them now!! LOL! I know that I had Band 41 only the first time - that's not enough to get anyone to do anything since it's only the tail of the bacteria that's being picked up and it could be any one of the spirochetal infections - although there aren't that many.

You will want to be careful in your planning as not everyone responds to the abx challenge in the time period most docs use. Most doc's will only use a few weeks of abx before the challenge, I have no idea if I would have tested positive at that point - I took abx for a full 12 months before I retested and got my positive.

Hi Jackie,
Have I invited you to email me for referrals yet? If not, I would be happy to share what info I have on any LLMD's in your area. Just send me an email and include the area that you are looking in.

Jackie, I did not find one in illinois. I found llmds in WI, Missouri and indiana. Sadly all have 6 month waits.

I think I am going to try and find thr jurnegan ebook mentioned,

Titus, I would suggest that you start a new thread titled "looking for LLMD in Chicago". More will see it that way. If you haven't already, you will need to enable your email, because we can't mention Drs. names on the forum for various reasons.

I am seeing a Dr. in August in Chicago that I have heard good things about. But I have not been to her yet so do not have first hand information for you. I will send that to you to check out.