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Had First LLMD Appointment - Not Pleased!

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Posted 7/22/2016 4:08 AM (GMT 0)
Hey all,

I have burning in joints, burning all over body, fluid in ears, OCD, anger, etc and was tested for Igenex last year but disregarded because of the IND. I went to my first appointment with an LLMD yesterday, and he barely looked at my Igenex results, which are this:

IGENEX IGM RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
**41 kDa IND
(all other bands are -)

IGENEX-IGG-RESULT NEGATIVE
CDC/NYS RESULT NEGATIVE
**23-25 kDa IND
**31 kDa IND
**39 kDa IND
**41 kDa +
(all other bands are -)

Also, my Quest Western Blot came back with IGG 23 and 41 bands reactive.

I had thought that most LLMD doctors considered IND as positive, but this guy says he wants to run a gamut of tests on me to be sure.

He wants to do a Nanotrap antigen test (he claims this is a fairly new test for Lyme disease and is reported to have a 95% sensitivity and specificity), tests using the Asyra machine, and Alfa machine just to make sure I have it. He also offered to maybe send my blood to Advanced Labs for a culture. He seems to be SO SURE that these tests are fool proof. Wouldn't any other dr look at my symptoms, my Igenex results, and start me on Antibiotics and other treatment already? I mean, NO test is fool-proof and either way, based on those Igenex results I want treatment. He also is one of those drs that sells tons of expensive supplements and other questionable stuff that I looked up and seem like scams.

Would you guys see a different dr? Does my Igenex test look conclusive for Lyme? He didn't even MENTION co-infections. BTW, I forgot to mention, he's only had his LLMD license for one year. I mean, he does sound brilliant and has good reviews, but he's only treated 15 lyme patients and has limited Lyme experience. Has anyone heard of these tests before? I'm so confused :(

He ALSO says, that if I have lyme he does NOT want to start me on antibiotics, but he wants to use these machines in his office to treat me with like this electric accupuncture machine (this all sounds hokey pokey to me) and they cost hundreds of dollars a treatment. THEN, if I dont start to feel better he will place me on anti-biotics.

Post Edited (Johnny_Five) : 7/21/2016 10:24:34 PM (GMT-6)

Posted 7/22/2016 4:13 AM (GMT 0)
I haven't heard of the tests - but red flags sort of go up for me just because they seem to go up for you. Lyme is a clinical diagnosis, blood work is just to confirm it. Frustrating!
Posted 7/22/2016 4:34 AM (GMT 0)
This is BS to me. This is how it works in my world. I want antibiotics, and whatever rest is left in the world. Give me the big guns and the fairy dust with it to complete the magic.
Posted 7/22/2016 5:18 AM (GMT 0)
Do my Igenex results seem viable to start treatment in y'alls opinion?
Posted 7/22/2016 12:00 PM (GMT 0)

Johnny_Five said...
Do my Igenex results seem viable to start treatment in y'alls opinion?

YES!

Noted LLMD Dr. Richard Horowitz and author of "Why Can't I Get Better? Solving the Mystery of Lyme and Chronic Disease" diagnoses based upon symptoms and *any* Lyme-specific band.

He speaks about this in the following interview:

www.foxnews.com/health/2016/05/25/lyme-disease-debate-can-condition-be-chronic.html

Not all LLMD's are created equal...including those referred by ILADS.

Based upon reports on here (including my own), we have come to the conclusion that ILADS refers MD's if they have attended ILADS conferences....even if it's only one.

My ILADS-referred LLMD didn't follow many of their guidelines because some of them were "too new" in his opinion. And, he refused to entertain coinfections without (unreliable) testing....even though it's well-documented that Lyme rarely travels alone *and* I herxed with symptoms indicative of coinfections.

You will bode well if you trust your gut. Get thee to a different LLMD pronto.

In the meantime, you just might want to consider an herbal protocol to get you started on your healing.

So sorry you've had to deal with this nonsense. You are clearly not alone.

Good luck!!!
Posted 7/22/2016 12:02 PM (GMT 0)
Those are pretty expensive tests he wants to run. You have IND on Lyme specific bands and you had 23 from Qwest. I would say that along with your symptoms should be enough to get you some treatment.
Posted 7/22/2016 2:01 PM (GMT 0)
Hmmm i would test for coinfections. Kind of sounds like some bartonella in there but what do i know.

Anyways, one thing I've learned from this illness is to not be prejudiced towards any sort of treatment modality. I got sick right before I was supposed to graduate with a degree in biochem. Born and bred in western sciences... Spent the next couple years applying it solely to researching my illness. I gotta say, western medicine almost sounds the hokey pokiest of all to me now. Not a stance I was at all raised to believe. This is why it's so SO vital to learn about this illness, learn about the treatments available and just do as much research as you can. The healing path is your OWN journey. There will never be "the" cure. Nobody has "the" answer. There is only your individualized journey back to health which requires a lot of feeling your way around, sometimes in the dark where few others have gone. I know it's freakin hard to learn this stuff when all your nerves are on fire, but that's what this community is for. So rather than call your doc a quack like most, I'm going to say that I have no idea his perspective on healing. If it doesn't sit right with you you can always get on abx with another doc first, or request this doc to start you on them anyways, and then get started on the learning process and see where you want to go from there. It's a bad idea to let anyone captain your own ship though and if your doc is good he will be receptive to your requests
Posted 7/22/2016 2:22 PM (GMT 0)
Instinct or intuition was given us for a reason -- I agree with CD and you should go with your gut feeling on this.

Remember that doctors are providing us a service. We pay for that service. We should be happy with our service. It is not uncouth to fire a doctor. I have done it. Do not feel guilty. Just do what you have to do to get well. You have to stand up for yourself, your wants and desires. No one else will.

Hang in there and keep us posted.
Posted 7/22/2016 2:28 PM (GMT 0)
Jesus- is this guy a real doctor or the way Dr. Pepper is a doctor? I don't know about some of these LLMDs and I fiercly question what it takes to become an "LLMD." Do they just have to attend a conference or seminar? Like others have said, not all are created equal, and some are just bad doctors and people, forget about them being LLMDs. The red flags for me are that he wants to send you to more additional blood work, none of which I have even heard of with those tests. Since he does not want to even entertain co-infections, is a red flag as well. The good LLMDs/LLNDs, whether they treat with abx or natural therapies, will always treat for co-infections. Almost every patient has co-infections with borrelia.

As I was writing this I read Psilociprators post. He makes a very, very good point. I would strongly request to your doctor to start you on a therapy while you get additional testing.
Posted 7/22/2016 5:04 PM (GMT 0)
In order to be what we call a LLMD, there are no standards, so you will find both good and bad doctors, like any specialty. In order for a LLMD to be "associated" with ILADS, they only have to attend one conference, so it's not like they get all the training they need before many "hang up their shingle" as a LLMD.

If you get a referral to a doc that you don't believe can treat you well, then please find another one!

You have 2 Lyme specific bands along with symptoms of the infection, so there's no need for more testing. If this doc is willing to still treat you without more testing, then it's your choice to stay with them or not.

I've been to many doctors that sell supplements out of their office - but I only continue to see those that don't have a problem with me shopping around to find the better price. If it's with them, then fine, I'll buy from them, but if not, I have every right to buy my supplements from whomever I choose.
Posted 7/22/2016 6:12 PM (GMT 0)
All really great responses... Many experienced lymees ;)

Just like with any MD or specialist, LLMDS have to start somewhere. I appreciate that it takes time to accrue experience working in the world of Lyme & co. And as someone else mentioned, my previous suspicion of alternative treatment has transformed into curiosity. I think that is common after you've seen what we've seen.

He seemed focused on diagnosis at this stage, which is reasonable, although like I would expect with someone who doesn't have a strong history working lymees, he's leaning toward more specific means for dx. This usually isn't a good fit for lymees. Did this MD have you share your medical history and a deep review of your symptoms? Usually this is the bulk of the appt experience (unless you fill out a questionnaire and forward in advance), in order to grasp YOUR unique presentation.

Did he also offer anything to address your current symptoms or any form of relief?

Did he discuss the other critical components of treatment - detoxing, nutrition, documenting progress?

In the end, Your gut is giving you feedback. It's OK not to want to be in this MDs learning curve. Don't feel guilty or apprehensive about finding a diff MD. Nothing is more important.

-p
Posted 7/22/2016 9:02 PM (GMT 0)
I do have to add that the PCR test on Igenex was negative, if that means anything? I hear it's only useful in the early stages (I think I've had this for 3-5 or more years). My CD57 was also high instead of low.

Psilociraptor said...
Hmmm i would test for coinfections. Kind of sounds like some bartonella in there but what do i know.

I suspect bartonella as well based upon my severe psychological symptoms - severe irritability, aggressiveness, depression, etc. But, the guy didn't even MENTION co-infections - he acted like they didn't exist! How do I test for co-infections? Using Igenex? How many co-infections are there? It'd probably be cheaper to just test on my own then bring them to another LLMD maybe?

robby vieira said...
This is BS to me. This is how it works in my world. I want antibiotics, and whatever rest is left in the world. Give me the big guns and the fairy dust with it to complete the magic.

Exactly. I want to START with abx (the really only proven treatment), then go to alternative things. I can't afford to wait any longer. At this point it's chronic - I've had it for years. I may just buy abx online while I get a different dr. Is this a bad idea?

cd3764 said...
Based upon reports on here (including my own), we have come to the conclusion that ILADS refers MD's if they have attended ILADS conferences....even if it's only one. In the meantime, you just might want to consider an herbal protocol to get you started on your healing.

That is ridiculous. ONE CONFERENCE??? I don't even trust naturopaths. The one's I've seen have been quacks. The odd thing is this guy had an actual MD (but he sure didn't act like it). I don't believe all naturopaths are quacks, but the one I saw before this Dr saw low saliva cortisol and prescribed me 30 mg hydrocortisone per day for 6 months (even though my blood cortisol is fine). I don't know, maybe he was on to something, but that much hydrocortisone would have shut my adrenal glands down. Incidentally, for the first 2 weeks I was on hydrocortisol I felt like a million bucks - happier, more driven, less pain - but I was afraid of the long term side-effects.

What kind of herbal lymes protocol cd3764?

Pirouette said...
Did this MD have you share your medical history and a deep review of your symptoms? Usually this is the bulk of the appt experience (unless you fill out a questionnaire and forward in advance), in order to grasp YOUR unique presentation.

He had me fill out lots of paperwork before I came, AND I came prepared with a symptom list, a 3 year timeline of exactly what happened, (I have been in multiple car accidents, have 7 herniated discs, etc but my cervical spine is clean, yet I have neck, arm, and head pain and pain in ALL my joints, which the herniated discs don't explain). I told him I've seen over 30 drs, the nerve ablation I had, everything. He was very in depth. He asked about my sleeping habits, eating habits, bathroom habits - everything.

Pirouette said...
Did he also offer anything to address your current symptoms or any form of relief?

Nope. I am already on opiates, Lyrica, anti-depressants, and muscle relaxers to deal with the pain (but it's still not nearly enough), so I assume that's why he didn't offer anything else.

Pirouette said...
Did he discuss the other critical components of treatment - detoxing, nutrition, documenting progress?

Yes. He emailed me about 8 documents explaining some diet changes, supplements I should buy from him (try them for a minimum of 3 months he says), fatigue from lymes, about the machines he wants to use on me, about the "95% success rate of the Nanotrap lymes test", etc. I'm sorry, but there's NO lymes test with 95% specificity. Based on that claim alone I should run.

I'm seriously considering ordering abx online until I can get an appt with another dr. Where I live, it takes about 2 months to get an initial consult for Lymes. I cannot wait any longer! Thoughts?

Post Edited (Johnny_Five) : 7/22/2016 3:15:15 PM (GMT-6)

Posted 7/22/2016 9:55 PM (GMT 0)
I'm sorry this is such a tricky situation, def concur that it can be hit or miss with llmds and finding a quality one. This person sounds inexperienced and in your shoes I'd also be looking for someone else.

Personally I would avoid ordering antibiotics online and self-medicating without doctor supervision. If you are in limbo without treatments waiting to see another llmd, I'd suggest looking at starting some form of herbal treatments to tide you over. That's just my two cents. Herbal antimicrobials can pack a heavy punch.

Good luck!!!
Posted 7/22/2016 10:17 PM (GMT 0)
Blood cortisol and saliva cortisol are different because the blood cortisol gives you an overall, and saliva cortisol gives you the current picture. The best cortisol tests have 3 or 4 collection times throughout the day. It's usually one as soon as you awake, one at noon, one around 3 or 4 pm and then the last one just before you go to bed - that way you get a complete picture of what your adrenals are doing throughout the day. Here is a really good page that can explain a lot about adrenals (& thyroid) :
www.stopthethyroidmadness.com/adrenal-info/

Adrenals put out hormones that control every organ and tissue in the body, so that's why you felt so great on the replacement cortisol. There are natural things you can take, or you need to take the low dose hydrocortisone.

I didn't catch my adrenal issues until it was too late, they crashed taking my thyroid with it, so now I'm having to treat these infections and adrenal and thyroid issues as well, and let me tell you, it's a royal pain! I can't tolerate hardly any stress at all, whether it's emotional/mental or physical, so herxing comes with a new issue, and I can't afford to stay in a herx for long, which means the treatment for Lyme and company is taking longer, as my adrenal health has to come first or I end up with Addison's. Not a fun choice to have to make, or situation to try to keep balanced out.

The hydrocortisone doses are supposed to match what the adrenals put out (or should I say are not putting out?), so that it's not the same as taking hydrocortisone at higher doses, so the long term effects are not the same. And, you may only need it while you are healing.

I would encourage you to find another doctor, one you are more comfortable in seeing - as we have to have confidence in our doctor - and to insist on saliva testing for your adrenals.
Posted 7/22/2016 11:11 PM (GMT 0)
If your doctor won't order the test, you can order online. Very east to do. I just ordered another adrenal test from ZRT labs. It was just easier for me to order it.

www.zrtlab.com
www.directlabs.com/mobile/OrderTests.aspx
www.ultalabtests.com/fundamentalmedicine/Item/Categories
www.truehealthlabs.com
www.mymedlab.com/product_categories (many companies and tests combined under one website for ordering)
Posted 7/22/2016 11:49 PM (GMT 0)

Traveler said...
Blood cortisol and saliva cortisol are different because the blood cortisol gives you an overall, and saliva cortisol gives you the current picture.

I had it done. Here are the results:

VIEW IMAGE

Every night, I literally still feel like it's daytime until 5 am. I just DO NOT GET tired. It's so weird. I attribute some of this to my meds, but even before the meds I felt the same. OCD, anger, rage, can't concentrate, extreme irritability, no drive to hangout with friends, no drive for anything. The cortisol was the best anti-depressant I've ever taken - I finally felt like a normal person. I could collect my thoughts together finally!

But...if my Adrenals were messed up wouldn't my TSH, T3, and T4 levels be off??

He also checked my heavy metals:

VIEW IMAGE

He said my mercury is high, but it doesn't look high to me - besides, I had no signs of mercury toxicity. He also said I had mono found in my system (which I never remember getting) but so do 50% of other adults. I think he was just looking for things to treat.

I would like to find an LLMD to treat both my lyme AND adrenals. Based on the fact this LLMD guy doesn't seem to think the IND on my Igenex is fishy AND never mentions co-infections, I need to find another. I'd like to get on abx immediately.
Posted 7/23/2016 12:44 AM (GMT 0)
The adrenals don't "take down" the thyroid until late in the process, when the adrenals are the verge of shutting down. I was told I was only one step away from Addison's. You may not be that close to the adrenals shutting down. But, you are seriously low in cortisol production and you will find not only getting to sleep easier if you support your adrenals, but you will heal better and faster.

And the actual number of people in the US with EBV is at least 95%. It's common to have viral issues with these infections because Lyme lowers the immune function.

Let us know if you need help locating a different LLMD.
Posted 7/23/2016 6:42 AM (GMT 0)
Johnny 5 .he is trying to cover bases.and his ass...my first doc .ordered me 2 abx and a black box antifungal..i did my own thing ..then went to a fuctional doc who has lyme herself...
you can order abx online cheap no script ...there are other means also. ..it is not a pancea...infact i saw ketes dying only under 4 abx and her liver could not hsng but 2 days. Consider rife,hbot ,iv silver ,h202,ozone and venom nosodes and photons is what germsny uses
Posted 7/24/2016 12:36 AM (GMT 0)
I'm sorry... this is all incredibly overwhelming. I've been aggressively searching every possible site regarding Rife machines, bee venom, Asyra,, StopTheThyroidMadness, etc, etc, etc... scanning each page with my eyes aware but my brain numb. This. Is. Nuts. I'm relieved John's Hopkins was the one with the biggest balls and finally decided to open a research center for our ailment. We're on our own here, searching every possible avenue to cure our condition, that the CDC does not care to acknowledge. Lymies have been like the first indians on a country, trying every berry and fruit to see which one is delicious - and which one kills us. At this stage in human civilization it's crazy we still have to strive to cure ourselves, when we have millions of dollars just waiting to be used on Lyme's research.

Traveler said...
But, you are seriously low in cortisol production and you will find not only getting to sleep easier if you support your adrenals, but you will heal better and faster.

How reliable are these salivary results by the way? I still have hydrocortisone in my room, should I take it?

Traveler said...
Let us know if you need help locating a different LLMD.

I do. I am in Gainesville, Florida, 32608. Thank you.

bluelyme said...
you can order abx online cheap no script

I was considering this - but what kind/dose/frequency? Plus, I don't know what co-infections I have. Will the abx treat em all? I have mainly pain EVERYWHERE (joints, head, limbs, face) and irritability/rage/OCD?

bluelyme said...
infact i saw ketes dying only under 4 abx and her liver could not hsng but 2 days

I'm sorry, but I have no idea what this say's lol.
Posted 7/24/2016 1:59 AM (GMT 0)

Johnny_Five said...

He also checked my heavy metals:

VIEW IMAGE

He said my mercury is high, but it doesn't look high to me - besides, I had no signs of mercury toxicity. He also said I had mono found in my system (which I never remember getting) but so do 50% of other adults. I think he was just looking for things to treat.

With your mercury at 5.6ug/L, I wouldn't be too worried. Mine was 100ug/L, to put it in perspective. Do you have amalgams? Fish consumption? A better way to gauge mercury than the challenge test would be a blood test combined with a hair test or urine test depending on your suspected source of mercury. Mercury toxicity blunts immune system and can keep you from recovering from Lyme, which is probably why your Dr wanted to test you.
Posted 7/24/2016 3:00 AM (GMT 0)
Ketes short for spirochettes
4 abx short for four antibiotics
video evidence you tube mildred arboux blood

they havent changed the abx game in 30 yrs
lyme md has some good combos listed ...
some use penicillin g shots with flagyl
some have done intermuscular shots of rocephin with tinadazole
be careful with floroquinalones. ..also antifungal before you start herbs or abx
babesia needs antimalarials

dont wait for elq330 or curza 99...
It sucks some thing i need my brain for is thats what no workie good
Posted 7/24/2016 9:04 PM (GMT 0)

1000Daisies said...
I know that IGENEX is highly respected and recommended here. I don't disagree with that. However, I've been disappointed with the inconclusive types of results.

What were your Igenex results? Were they similar to mine, with a bunch of INDs? Because of all the pain, suffering, and over 35 doctors I've seen now, I am hoping to God I have Lymes Disease so I can pin it on something and stop my search. I'm so tired of searching.

My Igenex test says negative but then theres 4 IND and a positive all on Lyme specific bands. I don't want to put all my faith into thinking I have Lymes only to be disappointed after spending all my Grandpas money on a disease I was too gungho to believe I had.

Based on my Igenex results, do you think my Advanced Labs will come back positive? I do NOT want to be hopeful then be heartbroken. My dr seems to think his Asyra machine is so great for diagnosing. I actually do it while I see another LLMD (2 at once) so as to not to waste time, and to pick the better man in the end.
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