Neuro doc questioned LLMD

[Sunshine989]

I have had an interesting reponse from a neuro doc regarding my visit to an LLMD. I have had numerous paresthesias, brain fog, issues with weird vision/dizzy spells, burning skin, and sensitive hearing at times. All occurred after the birth of my 3rd kid. I went to two neurologists. The second one I went to responded very strangely when I told her I went to an LLMD and asked me if I was diagnosed with lyme because there is a doctor locally that is "diagnosing everyone with lyme that goes to him".
I've done my due diligence when researching my sypmtoms and how to go about getting Igenex testing. I've had the bloodwork sent out to that lab. But I find myslef questioning the validity of it now because she mentioned that. Does anyone else think that LLMD docs are quick to diagnose people with lyme??

[JackieCalifornia]

I had only one LLMD, so unless you live near where I am, my doc's name won't help.  But sure, PM me.  Glad to help if I can.

ILADS has a referral function and can send you names of LLMDs near you, but I don't know that there is any 'test' that is given to each LLMD who belongs to ILADS to see if they are good.  So contacting ILADS is not a bad idea, but don't assume the doc is as good as you want him/her to be.  

[Sunshine989]

It is so disappointing that doctors can make us doubt what we are doing to find an answer in getting better. My neurologist was (and did) send me out the door and said see you in 3 months. But what about how I am feeling?? I am scared I am going to get worse. I have no answers. Some days I wake up and my head is so cloudy and I feel like I'm on a boat. And my vision is worsening by the day. Are these permanent changes happening or can they be reversed if treated with meds?
I have my next LLMD appoint in 2.5 weeks. I'm looking forward to some answers.
Can I PM you for your suggestions on an LLMD?

[JackieCalifornia]

I don't have time at the moment to write a longer message, but here's the short version:

     You say:  "I have had an interesting reponse from a neuro doc regarding my visit to an LLMD. I have had numerous paresthesias, brain fog, issues with weird vision/dizzy spells, burning skin, and sensitive hearing at times. All occurred after the birth of my 3rd kid. I went to two neurologists."

Neurologists are well known as a group for NOT understanding Lyme or how to diagnose and treat it.  It would be like taking a Porsche to a VW dealer:  they just don't have the experience to know the possibilities.  (No offense to VW owners -- I had one, and it was a great car.)

     You say:  "The second one I went to responded very strangely when I told her I went to an LLMD and asked me if I was diagnosed with lyme because there is a doctor locally that is 'diagnosing everyone with lyme that goes to him'.

That is a typical reaction from a nonLLMD to knowing that the patient has seen an LLMD.  Too often, the generation of original discoverers of Lyme have failed to keep up with new research and are relying on their earliest approaches to diagnosing and treating Lyme.  Docs who assume that patients are being over-diagnosed are simply not paying attention to the fact that Lyme is spreading widely through out North America and elsewhere in the world.  It's Mother Nature's way.

     You say:  "I've done my due diligence when researching my sypmtoms and how to go about getting Igenex testing. I've had the bloodwork sent out to that lab. But I find myslef questioning the validity of it now because she mentioned that. Does anyone else think that LLMD docs are quick to diagnose people with lyme??"

I personally went through 20 MDs of various kinds (including those you mention above, but no LLMDs) before one doc tested me by Western blot/ELISA tests, which are the older kind of tests and not as accurate as the tests Lyme specialists now tend to use from IGeneX Labs.  When my 20th doc, in desperation, tested me for Lyme disease, it came back positive!!  But the doc said I 'could not possibly have Lyme disease' because I wasn't 'sick enough'.  (Thanks, docs.)  This particular doc had a lot of very ill Lyme patients who were very sick, and I have always wondered since then whether the patients were suffering so much because the doc was too dense or too arrogant to rethink the diagnosis and treatment approach.

If you need help locating a Lyme specialist, let us know and we can send you some avenues to do so.

Take care, and hang on!

[mojogal]

Take it from someone who suffered 25 years before treating, the longer you wait, the worse your symptoms will get. Some days will be worse than others even when treating.

[Sunshine989]

I didn't think they would be. But I was thinking back to when I went to the LLMD - he did think I have lyme and was going to start antibiotics that day but decided to wait because I am breastfeeding my baby. He is reputable in the lyme community so I really trusted his opinion.
The thing is- I'm not that sick. Just having really bothersome symptoms. Some days worse than others. I guess I doubt it for that reason. Is that normal?

[mojogal]

There are going to be quacks any place including LLMD but no I don't think they are too quick to diagnose Lyme. That is what mainstream Dr would like you to believe because they don't understand. Igenex testing is excellent.