First LLMD appointment

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Maddiesadie
New Member


Date Joined Aug 2017
Total Posts : 12
   Posted 10/5/2017 8:07 AM (GMT -6)   
I saw first llmd over a week ago. Appt was to be 1.25 hrs but was in reality just a bit over 30 min, it was busy and he was behind and we waited but I still was charged full price.

There was a list of symptoms I had to check off which I had filled out prior,.

He seemed overwhelmed by my issues, and kept saying he didn't know how to "cook"me. Yes, it's evident I've had it for a long
Time with mult. Reexposures, but he did the western blot via Igenx, along with c4 test for mold, but little else in terms of bloodwork. No coinfections. I asked, and he said I had 100 things wrong with me. I was too tired to say more. It was unairconditioned and hot, I don't do heat well.

He said immediately he's not doing antibiotics, I didn't think then to ask reasoning. I just wanted reasonings. He started me on LDN only, till I see him in a month. I'm to read about LDA, though I'm at point where reading comprehension isn't working well.

I showed him neuropsych test from 5 yrs ago and all the issues with my brain, dropped IQ, ect..he seemed overwhelmed, or like an adhd Doctor, and couldn't really read the page he focused on.

He kept asking why I chose him, why so far from Pittsburgh, why not a doc north of me, etc.

As for physical exam, it was bp, weight, that was about it..no neuro exam, no stomach, mouth, nails, anything...he tentatively touched my hair that up is falling out in clumps. I took my sunglasses off briefly to show him my "freaky"abnormal eye movements, though he told me I didn't need to remove glasses. He too was freaked by my eyes, and quickly added when that happened. I said 7 yrs ago.

He asked what my PCP, rheumo, etc. were doing, When I said they don't speak of Lyme and that after possible ALS, MS, etc they gave up. He seemed not to understand how that is possible. When I said I lost trust in docs he was very offended

He was more focused on hashimotos then anything, which seems strange to me. I have an endo. Also, hept saying he predicted adrenals would crash shortly, and what was I going to do? He said things about cortisol dosing, but did not act on it. He asked if my PCP will address it.

He kept saying we would have to proceed very slowly, like I was a delicate flower, he repeated that..I wanted to gag. Slow, yes, but it's necessary to do Something...ti grab the bull by the horns...

I mentioned horrible insomnia, 21 yrs ago sleep studies started showing non REM, possible apnea, eye...all that...
I said present melatonin and low dose trazadone aren't working, and I won't up trazadone due to side effects, he simply threw another container of his own melatonin sold in clinic, into my bill.

I asked of diet, as GI is a mess, I said I'm on paleo trying to transition to AI paleo. He said "well, if you think it works"

There was no talk of detoxing, questions of sleep, supplements, anything.

He did say more than once he needed a whole day to work with me, that was certainly notbwhatbtne 33 min. was.

I told him of lesions and things on last MRI, the MRI findings of years ago, ct of head findings, I gave him some of my prior diagnoses....

I told him I can't "see" correctly, it's like I have no peripheral vision, or maybe no central vision, no idea. I don't seem to use my eyes to see where I am going, I don't "see" people, I have no idea what it is.

I spoke of what many compare to severe dementia, I just turned 42. I told him another tooth had just been pulled the previous day, as my teeth literally break at base, or shatter, or just don't last...

I told how recent nutritionist said def. Lyme, mold, HLA whatever that means I don't detox, heavy metal toxicity, etc...

I feel like that money was basically wasted, yes he did Lyme and mold test, which nobody else would do even after most recent bullseye rash yet again. And LDN, though all he said of that was take at bedtime, it may cause weird dreams, some can't take it due to feeling worse, if I feel nothing I will probably stay on it...that's all he said, I looked up what it is used for, why, etc.

I'm on waiting list that's into next spring for someone else, I can't waste my money on someone who can't help, I've been disabled for 10 yrs. I've been starting detox on own, ordered Buhners book, starting anti parasite cleanse today, followed by candida when this one is over. I'm trying to find out absolutely critical supplements, I will get copy of hair analysis today done by nutritionist. Though LLMD said the results aren't really accurate and that test isn't used much. After$135 I hope it is.

I just had to write this, it took over a week after I saw him to figure out what I wrote, to get thoughts together. I was taken to appt by parents, who are just starting to try to grasp this, and doing poorly. I can't drive, seizures, etc. traveling is brutal, I was so car sick, light sick, etc. after so much info is put at me, brain gets too overloaded and I just shut off. It's like I can't ..advocate..anymore, but over 10 yrs ago this became issue.

I had issues since birth, Bell's palsy by age 5, misdiagnosed in childhood with severe growing pains, etc. as adolescent diagnosed as depression, eating disorder, mono, college was Epstein Barr, anxiety, mono, migraines, etc young adult thyroid cancer, hypothyroidism, migraines, insomnia due to medical condition, chronic fatigue, fibromyalgia, mono, lupus, dystonia, POTS, dystonia, seizure disorder, gastroparesis, small fiber neuropathy, paraneoplastic syndrome, sjgroens, RA, raynauds, etc Eric

Pirouette
Veteran Member


Date Joined Mar 2014
Total Posts : 5808
   Posted 10/5/2017 11:28 AM (GMT -6)   
Maddiesadie -

I am so sorry you are going through all this. It's overwhelming to read a summary--must be everwhelming to live it.

First, I would call his office and talk w/ an office manager or whomever you can get if the receptionist can't help you and let them know very politely that you did not receive the full two hours that you paid for and that you would like a partial refund---things like this needed adjustment to what you're billed do get overlooked, especially if the MD's schedule gets disrupted.

Generally, another option is a credit for your next appt (although I don't suggest you return to him). I think he communicated enough clues that he will simply be troubleshooting your issues and has no idea where to begin. That's actually good info and useful - doesn't make him a bad MD - just means that you'll probably need to move on to someone else.

However, one thing he said I agree with - your situation will take considerable time to unravel, and your body needs a slow and stead series of investigations. I know you won't like reading that and I spent (and wasted) the first year after my dx rejecting that reality in my own situation and I fully regret it. You cannot push your body into responding faster or more comprehensively than it is able to. And you're likely going to have to focus on one or two issues at a time.

I think it's very good that you wrote all of this out. Also, you are doing all the right things by engaging detoxing and starting some pathogen treatments on your own. Again, it's pretty important that you do one thing at a time so that your body can focus its energy and resources dealing with one thing - not spread too thin. You could really kick up a storm by trying to do too much too fast.

I have a couple of general questions just to get a better understanding for how to recommend your next steps, if you don't mind:

1. VIRAL LOAD
Are you successfully treating the EBV? In other words, are you on antiviral meds and are you currently experiencing EBV-related sx?

High viral loads can sometimes dominate everything and suck up all your immune system's resources, which makes it difficult to make progress with any treatment.

On the other hand, getting on the right antiviral at the right dose can be a VERY straightforward way to make progress--eliminating one of the dominant issues by getting it under control helps clarify what to do next and helps make the treatment more effective.

I did not do well on herbal antivirals but I know they work for some people. If you're on Rx, be sure to help your liver and kidneys process the meds with milk thistle seed and/or burdock root - test them out to make sure you don't have a sensitivity. Others with sensitivities do a liver cleanse before starting meds and repeat.

2. GI HEALTH
If your GI health is not good, it will likely be difficult for your body to properly absorb any treatment.

We've had some good conversations here on the forum about gut health but without knowing any details for your particular issues, there are some basic healing steps that might help you: reduce your diet to liquid, pureed, or babyfood like consistencies. In fact, I used to eat babyfood-- a little expensive but no prep, easy access to variety, and small portions mean no wasted food.

Eliminate ALL sugars (no fruit at first) and ALL grains, dairy, processed food. The less your GI has to try to digest and the fewer the chemicals and risk for more harm the better.

3. MOLD
If you feel that a mold issue is present, a fairly simple thing to do is to try a strong GI binder to help remove it from your body.

Removing yourself from a moldy environment might be more complicated but also necessary if you're to eliminate the mold issue. I swear by PURE Cholestyramine but it's expensive and requires and Rx.

Others on the forum have suggested that modified citrus pectin is as effective - I have not researched that. Some experts believe that the mold issue must be addressed before any other pathogen issue can be resolved.

4. YEAST/FUNGUS
Yeast/fungus often originates in the gut, can cause damage if not mitigated and can also interfere with proper digestion and treatment - many of the symptoms of y/f imbalance overlap, which makes it very difficult to navigate treatment.

Also, y/f AND the die off process as you're treating it can cause multiple neurotoxins to affect neuro-psychological sx so that might also be a source of some of your sx. Treating y/f overgrowth requires the right antifungal as well as a solid GI binder to help remove what you're killing - or the debris and leftover toxins can create the same sx as the overgrowth.

Here is a ton of info in the Y/F overgrowth post in the "New to Lyme?" thread - maybe you can engage your parents to read this and distill the main issues that address your particular situation - that leaves one less thing for you to try to manage right now:
www.healingwell.com/community/default.aspx?f=30&m=1606610&g=3644275#m3644275

So -

Hopefully, you can make some progress with steps 1-4 above during the waiting period before your next appt with the new LLMD. Do only one thing at a time, always start with low doses and one component at a time. Detox EVERY step of the way. It will take you a few months to work up to a comprehensive protocol.

TESTING
Be sure to get copies of the test results this MD did and to take them with you to your new MD.

I wouldn't worry too much about the coinfections testing - they are very unreliable. I would spend the time to develop detailed info about your symptoms - I don't know if the list of questions he had you fill out is sufficient but I like this Jernigen's list - really helps pinpoint the dominant infection (and this can always change over time) and give you some idea of the infections you might be dealing with - although it's not comprehensive.

Jernigan's symptom list:
www.healingwell.com/community/default.aspx?f=30&m=3673749&g=3673789#m3673789

NEURO
Have you ever seen a Lyme-knowledgeable neurologist? That might be a little helpful although they are few and far between.

ENDO
You mentioned you have an endo but what are you treating? What tests were done?

Hope that's helpful to get started. Hang in there - we're here to help as much as we can.

-p

Post Edited (Pirouette) : 10/5/2017 11:31:34 AM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26402
   Posted 10/5/2017 11:57 AM (GMT -6)   
Maddiesadie - It was a lot to read...I can't imagine living it.


You need a very experienced (and confident) LLMD to treat you. Paying for 1.25 hours and only getting 30 minutes is terrible, and you should call and ask to be reimbursed.

Do you live in an area that doesn't have many LLMD's?


If you're interested in searching for another one - email me...maybe I have a few more options on my list.
I'd also like you to email me...so I can put a comment on the one you did see (if he is on my list).
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

cakegirl
Regular Member


Date Joined Nov 2016
Total Posts : 167
   Posted 10/5/2017 2:57 PM (GMT -6)   
Have you considered consulting a Buhner herbalist via phone?
http://buhnerhealinglyme.com/resources/herbalists/

Maddiesadie
New Member


Date Joined Aug 2017
Total Posts : 12
   Posted 10/6/2017 8:17 AM (GMT -6)   
Sorry I wrote so much , it took almost 3 hrs of start stop...it is too much for me to retread!

as for EPV, nobody here does anything...even when I had it, just "let it run its course". In fact, my reg. Docs don't address any infection well, as in when candida is rampant.

No Lyme literate neurons around, I've probably seen 12 and am given the things like ms, neuropathy, dystonia, etc...or more likely, they look and say all is fine

Endo was treating after thyroid cancer,, they didn't know hashimotos or what very high anti thyroglobulin meant, now when I see again they will need to address adrenals as PCP won't.

I kind of have up on all western docs awhile back and have let most issues drop. I got too tired. I'm technically very overdo for lots of things. I did get IVIG for years, that too I let drop.

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 8922
   Posted 10/6/2017 9:10 AM (GMT -6)   
I super agree with Pirouette's post. Take your time and read it again.

Your llmd sounds like you overwhelmed him. He doesn't sound equipped to handle all of your problems. He was behind with his patients and then you walk in with a huge load.

Move on from him. You need one that will take one issue at a time and slowly treat it.

I will warn you also, you are in for a long slow process. You have been ill for so long that it is going to take you a long time to get well.

I'm so sorry for all you have.

But, don't give up! You can get well.
____________

Good Article

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 26402
   Posted 10/6/2017 1:35 PM (GMT -6)   
Maddiesadie said...


No Lyme literate neurons around, I've probably seen 12 and am given the things like ms, neuropathy, dystonia, etc...or more likely, they look and say all is fine

Endo was treating after thyroid cancer,, they didn't know hashimotos or what very high anti thyroglobulin meant, now when I see again they will need to address adrenals as PCP won't.

I kind of have up on all western docs awhile back and have let most issues drop. I got too tired. I'm technically very overdo for lots of things. I did get IVIG for years, that too I let drop.


Do you mean No Lyme literate Neurologist around? The LLMD doesn't need to be a neurologist.

We can help you find a LLMD.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

jrpsf
Veteran Member


Date Joined Aug 2014
Total Posts : 1627
   Posted 10/6/2017 2:36 PM (GMT -6)   
Maddie I see from your original post you asked for help finding an LLMD in the Pittsburg area. Maybe there's another recommended doctor that would suite your case better than this doctor did
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