Anyway - this new doc - whom IS an LLMD & I was initially anxious to see....said

...that because I have Hashimoto's disease & because I have Sooooo many positive results for other conditions such as migraines, chronic EBV, CMV, IC, IBS, etc, etc, (I'm not trying to depress you people, so I'll stop the listing).

So all of those POSITIVE diagnoses along with a POSITIVE WB from IGeneX makes my positive WB a little "suspect" because she wonders if the Hashimoto's disease (an auto-immune disorder) isn't playing some role in "confusing" the sensitive IGeneX test into seeing a Lyme antibody - when it could be another antibody entirely.

Am I making sense? I'm trying.

Anyway - she wants me to continue taking the abx I'm on with my PCP for the next 3 months - then get off of it (if the abx is not working) and take a DNA test to determine whether I do in fact have lyme or not.

I asked about the multitude of symptoms I have - and because I also have Chronic Fatigue & fibromyagia - she said all those symptoms could just as easily be attributed to that.

She said I am complicated and that I am in a "gray" area of medicine...meaning that it is too difficult to treat me with what info we have now.

She suggested that I try to contact Nick Harris from IGeneX and ask the questions. I will do that...thought I'd consult you really smart people first.

I left this doc's office determined not to cry until I got home. I'm home now, but am too tired to cry now.

Perhaps I'll wait & cry when I'm "refreshed" in the morning...at another doc's office.

Docs love it when you cry in their office. I'll do it then. Maybe I'll get that psych admit afterall.

So - said all that to say...anyone with Hashimoto's disease ever experience a doctor questioning your test results BECAUSE of the auto-immune nature of Hashi?

OK, thanks.

Me & my gray matter are in a "gray" area, so why am I so blue?

Blessings,

for 5 months now but have had Hashimoto's

for years. My llmd knows that I have this

but did not mention that it was possible to

get tainted results due to the thyroid. I

will be very interested to hear what you

learn from IGeneX. It would be great but

trust me I've had the worst Hashimoto's

symptoms over the years but nothing like

the "new" symptoms I've had for the past

several years so I personally believe they

are two totally different problems.

However, I have read that lyme does attack

and hide in the thyroid causing the thyroid

to go crazy. Please let me know what you

I am positive for Hashi's, and have been diagnosed with IBS, FMS, CFS, and EBV, as well as migraines.

Most of these so-called positive diagnosis are not disease's, but symptoms. Even Hashimoto's thyroiditis may be a symptom of a chronic infection. I am also CDC positive for Borrelia burgdorferi, and positive for Ehrlichia as well.

My doctor not only believes I have Lyme, he is also convinced I have babesia, based on my symptoms.

Is this an ILADS doctor you saw? Where did you get the info that she is a LLMD? It sounds like she doesn't understand much about FMS or CFS, much less Lyme.

There is no definitive test for FMS or CFS, because they are syndromes, diagnosed in the absence of a more specific diagnosis.

Now, I do believe that Hashi's can cause some of the symptoms that you also find in Lyme. Properly treating Hashi's with sufficient thyroid hormone (T3 & T4) will correct some of those symptoms.

But if you have Lyme and Hashi's, you need to treat both. And there is the possibility that Lyme is actually causing the thyroiditis, triggering the autoimmune attack that is called Hashimoto's thyroiditis.

I can understand why you would be so upset with this doctor. She wants to use a DNA test as the ultimate answer as to whether or not you have Lyme? The DNA (or PCR) test is only reliable if it is positive. If it is negative, it only means there was no DNA in the drop of blood tested.

With an infection like Lyme, which prefers not to stay in the blood, that is a very bad test to rule out the illness.

You might want to use your three months of proposed treatment to hunt for a new doctor to see.

As for Hashi - worst problems occured when it was dx'd 10 years ago and then recently when my TSH skyrocketed to 12 & I then started needing T3 AND T4 supplementation.

I feel like my thyroid is leveling out now - meanwhile other symptoms seem to be spiraling out of control.

And yes, this LLMD is a founding board member of ILADS. Which is why I am confused and frustrated.

Although I do NOT want to have LD - it was rather frustrating to feel like I had taken a big step backward today in still needing to obtain and "official" diagnosis from an actual LLMD - DESPITE...

my clinical symptoms (which I realize overlap wtih CFS/Fibro)...

ALONG WITH the positive IGeneX results.

I'm just frustrated that I've got to be derailed from my focus on getting appropriate therapy and instead need to go back searching for an 'OFFICIAL DIAGNOSIS'!!!

mjbucuk - interesting about your sons - altho sorry they are having medical problems. I guess that's the kind of info I'd like to find out - how many people with Hashi show up with Lyme...and how many don't.

I will be contacting someone at IGeneX either tomorrow or Monday for those answers & more & will report back for the benefit of my fellow Hashi-lymies.

Meanwhile, I welcome any further reponses.

IBS, IC, EBV, FMS, CFS, CMV, and Hashimoto's could ALL have been caused by Lyme.

I hear you. I read it again, even though I didn't really miss it the first time.

It's just in my nature to second guess myself when I'm sitting in front of someone highly educated in a condition that I'm just learning about.

I guess I just had really high hopes & expectations for a @#$% FOUNDING BOARD MEMBER OF ILADS! Aren't they supposed to be THE "authorities" on Lyme????

Once again, must remember all docs are plain ol' humans too. @#$% it.

Thanks ya'll.

The good news, for me, is that antibiotics have completely cured my IBS. Now, this isn't true for everybody. But that was at least one thing that was easy. Was it Lyme? I don't know, but it must have been something bacterial.

Maybe you will find yourself improving on the meds you are taking. I hope so, that would make everything easier.

My thyroid was hyper when I was first sick -a few docs including an ER doc thought all my problems were hyperthyroidism - I knew this couldn't explain the flu like symptoms, knee pain, out of my mind symptoms, alcohol/medication intolerance, rashes etc. I think the only gray area is that lyme is so poorly understood.

I have Hashimoto's disease, and was diagnosed in my teens, I also have lyme and Babesia. The only test I have had at IGeneX was for Babeisa..didn't have a positive test for lyme.

My Mom and sister also have Hashimoto's disease, my sister was diagnosed at 15, my Mom in her 40's. I believe it's related to Lyme disease.

Have a good cry..it always makes me feel better. I do that same thing though... I hate crying in front of doc's..

I too have Hashimoto's disease.

My endocrinologist says Lyme loves the thyroid. He says it was caused by Lyme....

Treatment made the world of difference for me....

good luck

Are you seeing Dr. A.S-G? If you are, that would explain some things. Like everyone else, I have the lovely dish of hash and lyme

Anyway I agree with folks before me....I had at least one llmd get frustrated with my lack of progress on his regimen and I was frustrated with his lack of aggressiveness so we parted ways........
I know it's difficult but find another llmd or at least a doc that will help you...................zman

I was first diagnosed with the Hashi, then the EBV, IBS, then lyme.

What is CMV and IC?

Anyway, my doc is learning just like me. He has never questioned my lyme. I think you need a new doc. The hashi is brought on by the lyme. Your body is trying to kill the bacteria and gets confussed.

Please don't get too frustrated--you are on the right track. stupid doctor

I have yet to call IGeneX as I exhausted my energy when I went to see a pulmonary doc...whom, dare I say it, is actually taking interest in me & is running some tests!

Ah, the doc/patient relationship is so beautiful in the beginning when you really connect.....

As for my appt. yesterday with the famous ILDAS neuro - I'm beginning to wonder if she just didn't want to mess with me.

I mean, really, if you have the choice to handle several easy tasks or just a few "complicated" tasks with no clear answers - tasks that are relegated to a
"@#$%ING GRAY AREA" -
which would you choose?

I get it. I'm kind of a lazy @$$ too. I'd pick the easy tasks behind door #1 most all the time.

And so, for the record -I haven't cried about yesterday's appointment yet. I'll either eventually just burst into tears (in a public setting, otherwise where's the drama?) OR I'll write 10 pages of scathing, venemous nonsense about the doc & the overall ignorance in the medical community in my journal. Ain't Lyme grand.

I've found everyone's responses quite interesting.

For years, I've had the occasional electrical storm pain throughout my body - one of my favorite areas being my abdomen where I have to double over dramatically thinking I'm about to blow up.

My very favorite, however, is the electrical currents that fire off in my brain - where I think I must certainly have some major malfunction going on up there that should require an immediate labotomy.

I urge other Hashi lymie's to weigh in on this topic - I'm just interested in the connection...and how many there are of us in this @#$%ing GRAY area of medicine!

Some docs needs to start taking a little more interest in THE GRAY AREAS!!!!!!!!!

Blessings,

Oops! I forgot to answer your question because I was too busy ranting.

CMV is Cytomegalovirus. That's pretty much all I know about it because I'm getting tired of looking stuff up...or rather, I'm becoming more LAZY because
this medical @#$% is complicated!!!

As for IC - it is Interstitial Cystitis.
If you are a religious woman, Linda, get on your knees and pray you NEVER get it.

IC is a bladder disease, and the best way for me to explain it succintly is that it feels like the lining of your bladder is covered in ulcers and you keep drinking gallons of orange juice laced with shards of glass.

The unhappy bladder likes to spasm & threatens to shoot itself out of your nearest "opening" ...if you catch my drift. (I call that feeling: "I think I'm going to give birth to my bladder" feeling. Not fun.)

If bladder is not really enraged at you, it'll just constantly send the message that you have to pee, regardless of whether the trip to the bathroom was actually worth it or not. It can be a very bothersome symptom that will tempt you into buying some Depends.

Hope that answered your questions.

Anyone else have any questions for DR. Wiseass? I also give great advice on matters of the heart - as well as providing way too much crude graphic info about my other medical problems.

Anyone need "TMI" about IBS?

Feel free to email me with your problems. Maybe it'll make me feel better about my own.

Was bit in summer of 98, diagnosed with Hashi fall of 98, emergency thyroid removal Jan of 99.

My opinion: you can have thyroid problems without Lyme, with Lyme, because of Lyme.

DR. Wiseass has FINALLY - after a 2 week hiatus (because she has felt like total @#$%) updated the blog with some vulgarites, crude humor, and a few embarassing moments.

I have much more to write - more pain & angst to share - but will probably take a long nap first.

Hope my pain & humiliation can somehow bring a little lightness to your @#$% day.

Blessings,

Have a good nap..

daniella

If you have one or more specific bands on the WB, then you have Lyme.

Without specific bands, it could be gray area, but with.....not gray, in my opinion.

DR. Wiseass has FINALLY - after a 2 week hiatus (because she has felt like total @#$%) updated the blog with some vulgarites, crude humor, and a few embarassing moments.

YEAH BABY! I especially love the part where you detail out the yuckiness of your underwire bra. Can totally relate to this.

LLMD interprets the result as definitive and wants to treat. The logic here is that if the body is producing any antibodies then there is an autoimmune reaction going on - you can't be a little pregnant, you either are or aren't.

Endocrinologist does not consider it conclusive, but says we need to keep our eye on this.

Osteopath believes the results may very well be cross reacting lyme antibodies skewing the test and says definitely not to treat for hashimotos based on this because of possible risks, such as bone loss and wants to wait.

I am low thyroid, believe I have been all my life, but only started supplementation with lyme diagnosis. It has made a positive difference.

Matter of fact, I didn't KNOW there was an actual special treatment for it, other than supplementing the thyroid hormone.

My understanding is that Hashi is just the auto-immune disease process that screws around with your thyroid causing you to be hypothyroid.

Some people can certainly be hypothyroid without having Hashi...but my understanding is that the Hashi is the process of creating the antibodies against the thyroid.

If you don't mind me asking, what were your test results? And how are you being treated?

Just FYI - my LLDO thinks the lab ranges for thyroid ARE wrong!!!! Yes, wrong.

He said that labs generally make the "normal" ranges based on the average of scores for the population. So "normal" doesn't necessarily mean "healthy".

According to my doc - the TSH for hypothyroid people should be <2 and not the <5.5 established by the labs.

Write back Dolphinlady - I'm interested in what your doc is telling you & how he/she's treating you.

Blessings,

I asked him about the possibility of false-positives for patients with Hashimoto's - and he gave me a resounding ``NO'' - indicating they have studied cross-reactivity extensively; and that there is information about the connection between thyroid disease & Lyme disease on the ILAD's website.

(Naturally I can't find the info - but I'll bet one of you lymenet smarties can...!!)

Dr. Harris indicated that many endocrinologist around the country feel there is a definite link between Lyme and Hashimoto's - and that Lyme is most likely the culprit causing Hashimoto.

Per his request, I read my Lyme WB scores off to him, and he indicated that my scores represent someone who has had Lyme for quite some time.

I informed Dr. Harris of the "LLMD"'s suspicion about me having false positives because of the fact that I also have shown a positive for other such viruses as: chronic EBV; CMV; Herpes-6; etc.

Dr. Harris said that they have found a high correlation with those viruses in those patients experiencing ``chronic persistent Lyme''.

Dr. Harris indicated that at such time I am off antibiotics for at least 10 days, I could have a whole blood test (code 456) performed & a serum PCR for Lyme (code 453) performed, if I so desired. (most likely to satisfy my "LLMD"'s curiosity - my opinion - not his.)

I, of course, won't be having this done - because I won't pay for this LLMD's continuing Lyme education out of my pocket!

If I am off antibiotics for a longer period of time, Dr. Harris suggests challenging myself with a higher dose of antibiotics around the time of menses, then running a panel 875 serum antigen & PCR test. (I'm not really sure I understand what he means by that ....but I didn't realize that I didn't understand until after I hung up!)

i don't intend to have this test done either for the above mentioned reason - but I certainly appreciated Dr. Harris' thoroughness.

I indicated to Dr. Harris that I'm currently being ``officially'' treated with Samento (Cat's Claw) by another physician (whom I really really like). Dr. Harris indicated that was ``unacceptable'' - that it amounted to ``no treatment at all'' in his opinion.

(And if you are on Samento and disagree with Dr. Harris - please don't call him & give him grief about it. He's a busy man & I was just relieved he had the time & courtesy to take my call. I appreciated his honesty & his candor. I'm not trying to be a big bossy "B" here - I just say that because I know how crazy some of you lymies can get...you know what they say, "been there - done that". I say: "been there - still there" I is crazy lymie too.)

Anyway, Dr. Harris encouraged me to follow up treatment with that so-called "LLMD" that I saw, at which point I indicated that it had been rumored that particular "LLMD" does not believe in ``chronic persistent Lyme''.

Dr. Harris was careful in his response (as this particular LLMD is a founding board member of ILADS) and said that ``sometimes Dr. "X" needs a little reassurance.'' He suggested that Dr. "X" call him if additional information was needed.

Dr. Harris did refer me to another LLMD in my area - whom I'd like to see - but he is the one who is not taking new patients & also the one where I made a complete a## of myself with his receptionist a few weeks ago. (See my most recent blog post for that delightful story.)

I was wanting to beg my PCP to use her influence (they work in SAME building - how odd is that?) to get me into see this doc.

Ironically, however, my PCP doc doesn't want me to see him. I'm not sure WHY - but I will find out.

Meanwhile - I guess I'll be doing my best to educate my PCP about long-term abx use for chronic late stage lymies...while continuing to take my so-called "worthless" Samento.

HOWEVER, I will not be forking over any additional out-of-pocket bucks to get re-tested for Lyme because I'm busy, broke, and low on blood as it is.

I am, however, considering calling Dr. X and telling her what Dr. Harris said to me...followed by the ever poetic and mature statement: "So there! Nani-nani-boo-boo, stick your head in doo-doo!"

I just hate keeping my feelings bottled up....so I usually don't.

You have now been updated.

quote:

---

Originally posted by DR. Wiseass:

Dr. Harris did refer me to another LLMD in my area - whom I'd like to see - but he is the one who is not taking new patients & also the one where I made a complete a## of myself with his receptionist a few weeks ago. (See my most recent blog post for that delightful story.)

Hey DR---- I just reread your most recent post in your blog and it didn't describe the above referenced hissy fit you alluded to with the LLMD's receptionist.

I ask because I wonder if the above mentioned LLMD who is not taking new patients at this time is the one I see? If it is, I've had many a semi-hissy fit with same receptionist, and while it's embarassing at most, it does pass. I"m not the only one who has had "run-in's" with above mentioned (possibly) receptionist, either. It's common, if it is the one I'm thinking of.

So, if that's what's keeping you, if this is in fact the same LLMD who is not taking new patients (in Northern CA) I say, try try again!
Julie

---

Good detective work.

Julie, are you saying there is a chance to get someone in to the above mentioned LLMD? We had stopped sending people to him, as the waiting list was some ridiculous number, like 800.

BTW, as the CA DHS lists the official CA number of Lyme patients as being in the 200 range, everybody else in the country must be hogging this doctor's time.

So let me know, do you know something I don't?

As far as Dr. X is concerned I emailed you off line...you are not the first that has had a "gray" area kind of experience with this supposed LLMD. Something is up here...

Take care -

OK JustJulie - I know my writing can be a bit confusing at times because I tend to be a little "wordy" and all my vulgarity can be a little distracting. So...let me reiterate just HOW I made an a** out of myself with the LLMD's receptionist.

I walked in and said that I'd like to be put on waiting list...

"..you know, in case one of Dr. X's patients die before I drop dead, maybe I can get into see him."

I was trying to be clever. HOWEVER, since one of their patients DID in fact DIE that VERY DAY...my badly-timed cleverness was misconstrued as cruelty by the emotional receptionist who, I trust to this day, still wants to choke me.

So THAT'S how I mad an A** out of myself on THAT particular day...but with me - the "hits just keep on coming" so I trust you'll be staying tuned to all my @#$% melodrama.

For all of you in Cali-forn-I-a...you may all breathe a sigh of relief that you are not competing with me for one of the coveted spots for the famed LLMD in your area.

I am from the South! Can't you tell by my accent?

Lymied - thanks for your email. I wrote you back. Write me back again so we can gossip about the idiot "LL-duc" some more!

Blessings,