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428506 tn?1296557399

My recent LLMD appt

Well I just had an in-person appt with my Lyme doctor, and I have about 30 minutes before I need to head back to the airport, so I figured I'd share an update here which will also serve to help me remember some of the details.

I've been treating Lyme and co-infections for over two and a half years.  I've made a lot of advances in my health, but I'm not well.  

My appt. began with the doc asking me what symptoms are giving me the most trouble, and I reported to him my problems with daily crushing fatigue, even though in the AM I often have good energy; enough to work out rigorously.

I also told him about the ongoing issues with inflammation, neurological symptoms, joint aches/pains, muscle pain, bumpy rashes on my arms, strong burning pain in my underarm region, myofascial pain, difficulty managing my weight, optical migraines, lack of focus/cognitive issues, periods of profuse sweating and oiliness, and the emotional roller coaster that comes along with these symptoms and swings in my physical status.

I told him that I feel like a walking contradiction:  On the one hand I'll tell you how much better I am, and I can seem not only good but great, especially if you catch me in the morning.  But day to day I'm struggling with a lot of symptoms and lately the burden has felt overwhelming at times.  He knows I am in an ambitious career and I expressed my concerns of keeping my professional dreams alive.

He feels that there is definitely still a lot going on with me in terms of infections and associated metabolic problems.  While I'm disappointed that there is so much work left to do, I am relieved that he has a plan of action.  I feel like every mainstream doctor just shakes their head at me and implies that my problems are a result of character flaws and not medically problems.  So I'm glad to feel that I have someone "on my side" in this battle.

One disappointment was that my recent adrenal tests were not done due to a lab error, so I need to redo the saliva collection.  I'm also getting the usual battery of standard blood tests and a new Igenex western blot and some other specialty tests.  No, you do not need positive tests to have Lyme and co., but it does help guide treatment.  So while it's  hit to my veins and wallet, I understand the need to collect as much data as possible.

I'm going to continue on cortef (replacement hydrocortisol at a low low dose) even though we don't have the adrenal test results yet.  I'm actually upping my tiny dose by a tiny amount, but it is still well below the physiological level so there is low low risk of negative steroid effects on the Lyme.

I'm going to change up my antibiotics.  I've been on zith and bactrim, and will keep the zith but then pulse factive and tindamax, both of which I've been on before.  We discussed rifampin, which I've also been on before, but I reacted so strongly to it in the past that it's being held off on for now.

I also got the usual lecture to be better about supplements, and I do confess to being lazy about that.  I also got a new probiotic since he was worried that my tongue showed some signs of yeast.

Probably the most challenging course of action that he has requested is that I *at least try* to go gluten free, for at least 2 weeks.  I told him how miserable that diet made me in the past when I tried it, but then he asked if I'd feel the same way about it if the diet could alleviate my daily energy crisis.  I couldn't argue that, so like it or not (and it's definitely a NOT), I'm going to try.  I've been struggling terribly with my weight as well and even though I don't feel like this is a diet plan I can stick to, maybe he is right that if I try it and get results it will work out for me.  He even said that the fact that I feel like I need to eat grains may be a symptom that I have an intolerance of them, which sounds strange to me but he says he has seen this in people.  Unlike an allergy where you know to stay away from the offending substance, he said that when you are only sensitive to a food you can actually crave what makes you sick.  Again, sounds strange but then again so do many aspects of chronic and complex illnesses.

So I have new meds, new diet, and new supplement instructions, a bunch of labs, and another in-person follow up in a few months.  This is a lot to take on, but I need to get over this "hump" and need to start feeling reliably better, instead of just having random spurts of good times with lots of bad times in between.  I'm sure this will be a very challenging summer for me, I just hope that I am up for the work it will take to even try to see if these changes will work.

Still, while it is daunting I was relieved to the point of tears that he didn't just say that this is all in my head.  He made it clear that he sincerely thinks this is infection-related (mostly Bart) and that he has seen these problems in others and treated them.  And I was also touched that he went out of his way to comment that, based on what I've told him about my professional life, he thinks that if I'm this good while dealing with so many health problems that he imagines I'd be unstoppable if I was well.  That's the me I want to see, so I will try to focus on my goals and dreams instead of getting bummed out about the diet and (potential) herxing and other stumbling blocks of treatment.

I'm sure this is very long and disjointed, but I'm glad I got it down before heading back home because it's easy to forget a lot soon after the appt.  My trip here yesterday was awful due to bad weather across most of the county, I got in 12 hours late, getting to my hotel after 2 AM.   So fingers crossed for smoothing sailing back home!

Hope everyone is having a good week...
15 Responses
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Avatar universal
A side note on your intended approach:  it is sometimes difficult to rule out some of the other suspected diseases that may look like Lyme symptom-wise.  For example, MS (multiple sclerosis) is sometimes given as a diagnosis to someone who actually has Lyme, but the MS tests are not a slam dunk yes or no.  So you may have trouble ruling out everything else but Lyme.  Good luck to you!
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1692704 tn?1307211780
Just a comment about the SPECT Scan...I had one which indicated perfusion caused by Lyme.  This is helpful for the diagnosis of Lyme along with other blood tests and a physical exam.
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Avatar universal
Thank you Wonko for the thorough reply. I really appreciate the response. I just tested negative for Lyme through a Lyme Titer (.09). I know this is just an Elisa test, but I am going to rule out other conditions prior to getting tested further for Lyme. I'm glad you found out what was causing your issues. I hope you get better soon.

Thanks again
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Avatar universal
Hi -- to my understanding:

-- the tests for things other than Lyme are a lot more accurate than the Lyme tests; glad your doc is testing you for those other things

-- others here have had lesions show up on MRI, but I think the MRIs are not that good at detecting/diagnosing Lyme, tho sometimes they are given to rule out other ailments.  There is a brain scan called a SPECT scan that LLMDs sometimes use to look for signs of Lyme -- it looks for something different than the MRI looks for.  The SPECT looks for 'perfusion', meaning how well the blood is flowing in the brain.  Low blood flow apparently points to Lyme -- not all docs use this, but my LLMD did and I had pretty bad blood flow, due I think to swelling/inflammation of the brain due to the Lyme infection.  Others here have had MRIs, and the docs can get pretty exercised about abnormalities there, but it's not, to my understanding, all that important in Lyme.  Maybe someone else here can comment, or you can search "MRI" in the search box up above on this page, right above where it says "Lyme Disease Community" in big blue letters.  That will take you to past comments here on that topic.  

-- From what I read, band 41 can mean the presence of any spiral-shaped bacteria.  Lyme is just one of them, so that could be Lyme or it could be something else.

Band 23 however is specific to Lyme, meaning that no other infection will make that band light up on the test.  NonLLMD tend to require that there be a lot more positive bands with more ++++ signs on them before the doc will diagnose Lyme; an LLMD, tho, is likely to diagnose Lyme based on fewer such markers.  Because you have not yet had any antibiotics, your immune system may not be very active -- it gets tired after a while and figures it has probably killed whatever infection you have, and stops making antibodies, and because the test measures not the bugz but instead measures the antibodies, if your immune system is not whipping along fighting the bugs, the test result will tend to be low.  That's why an LLMD may give you a short course of antibiotics and THEN run the test, because that whips up your immune system, and THEN the test shows up more positive and helps with diagnosis.  This is one of the big big big differences between LLMDs and other docs:  LLMDs don't require the very high test results that nonLLMDs do in order to diagnose Lyme.  

(There is a historical reason for this, as I understand it:  the tests were developed to track the spread of Lyme through the population, not to test a specific patient for Lyme.  To avoid getting positive results due to other accidental positives on the tests, the standard was set VERY high to be sure that only absolutely, fer-shure cases of Lyme were detected, but that means that some people who really have Lyme don't test positive, for reasons such as ... their immune system has gone on holiday and isn't making antibodies to be measured.  That's why seeing an LLMD is important.  They understand this.)

I don't know what a 'high ag ratio' means.  Not familiar with that.

As to diet, if you go to the ILADS website at ILADS [dot] org, then in the search box type 'diet', you will get one hit, but if click that, it will take you inside Burrascano's extensive write up on how to treat Lyme disease, and on the left side of the screen, you'll see a half dozen hits on the word 'diet' within the document.  Dr Burrascano is one of the great Lyme clinicians, and while he writes in detail, it's not as much medical blah blah as you might expect, so rather user friendly.  It's almost like he's just talking to you.  He also writes about vitamins and supplements, I think, but don't recall at the moment.  

I eat a pretty clean diet these days and it has helped me a lot.  It sounds like a drag, but it's definitely worth doing, and I'm never hungry.  I eat whenever I like, and just keep it to the suggested foods.  

Since you're not pursuing your current doc at the moment, I'd suggest you look around for an LLMD-type to see when you are ready to take another run at it. Be SURE to get copies of ALL your test results from your current doc -- by law, I think the office has to give them to you, even if they are snotty about it.  You paid for the tests, you should get copies of ALL of them.  Then keep your own full set going forward, and when you find an LLMD, take him/her a set of everything that's already been done.  That can save time and money so the same tests don't get done without a reason, and also give a long view to the doc of where you are and where your body has been in its journey.

Good luck -- let us know how you do.  Don't be afraid to start a new message thread on a new topic ... sometimes adding to a long string of already existing messages means yours doesn't get read as much.



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1464587 tn?1307491605
You wouldn't happen to know what a high ag ratio lab would mean do you?
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1464587 tn?1307491605
He is testing me for I believe at least 4 other co infections right now..... are they as inaccurate as the western blot? but it will be the last for awhile because I lost the insurance again =( I just can't get a break =( 2 brain mris, 6 months apart both show the T2 lesions is what he calls them.... and western blot IGgs came back negative (no I wasn't on antibiotics when I took it) but Igm 41 and 23 were positive.
I'm just trying to figure out what diet is best for fighting lyme......
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Avatar universal
BeanBandit,

I think the diets are helpful and even necessary to battling Lyme, but the diet alone would not by itself, according to what I read, cure Lyme.

There are different treatments, mostly antibiotic-based, but because Lyme is caused by persistent bacteria, the immune system needs help to eradicate the illness.  

Has your doc tested you for co-infections?  Sorry, I don't recall your history.
Helpful - 0
1464587 tn?1307491605
All these talks about diets and my lyme condition has been getting nothing but worse. My doctor has me on a vegan diet, with no soy at all......... I don't think its helping.
What are your full diets that do?
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1094370 tn?1317134825
Hi Wonko:

I have been gluten free for over a year now.  I have cheated a few times, but for the most part, am really good about it.  I wanted you to know that yes, at first it is hard.  But, it gets way easier and you soon will see that being gluten free is no real big deal.  I believe a LOT of people, even those with no diseases are going gluten free.  Look at the grocery stores...they now have whole sections of gluten free stuff.  Also, CHEX cereal is advertising their cereals (corn and rice) on TV as gluten free....I'm buying it by the way.  Loved it as a kid and still love it.

I also gave up dairy for the most part.  I use almond milk in my cereal and love it too.  

So, it gets easier......WAY easier!    Also, Amici's pizza makes gluten free pizza just so you know!
Helpful - 0
428506 tn?1296557399

As a matter of fact, my illness did begin with a series of "typical" infections, including upper respiratory.  I experienced two events, one in '02 and one in '07, when I suffered simultaneous multiple infections (bronchitis, sinusidous [sp], upper respiratory, ears, strep).

When I got sick in '02 I ended up on antibiotics for a couple of months, and I seemingly got over it.   Over the next several years, I didn't "know" that I was sick but I did start to experience a host of strange symptoms on and off, just nothing that really interfered with my daily life.  

When I suffered multiple infections in '07, I was given less antibiotic treatment and a few months after the acute illness I began to experience an insidious decline that included neurological symptoms.

After trying my best to ignore the odd tingling and "out of body" feelings for about 8 months, I finally ended up going to a doctor about it.  At the time I was 28.  I was immediately sent to a neurologist whose first impression was that I had MS.  I got a brain MRI that showed some scattered white matter lesions, but a spinal tap came back negative for MS.  All of my blood tests, including Lyme, were also normal.

Over the next year I went to about a dozen doctors, including more neurologists, a rheumatologist, an opthalmologist, and returned many times to my general practitioner, as my symptoms worsened and spread.  Though some tests would show slight abnormalities, there was no explanation for my declining health.  I even ended up traveling out of state to a teaching university for an evaluation, which concluded with a neurologist telling me to repeat my MRI every 6 months and in the meantime to "pray that it's not MS."

Eventually the symptom load got to be too much, and I had to all but completely stop working.  I felt that I had completely exhausted mainstream medicine and had to think "outside of the box" if I was going to get help.  That is how I found my Lyme doctor, a so-called "Lyme Literate" Physician.  ("LLMD" is a patient label for doctors who have a more broad definition of Lyme and its treatment, it does not designate any official training of the doctor.)

I only ever had weak serological evidence to support a diagnosis of Lyme disease and co-infections, but I did live in places with lots of ticks for all of my life.  The whole time I was sick and seeking a diagnosis, I had people (some from real life, some from online sites like this) suggest that I should look into Lyme, even if my tests were negative.  I thought it sounded like a long shot, but again, I really exhausted all other possibilities.

So I have been treating chronic Lyme and associated co-infections (ticks carry more diseases than just Lyme, and often those with the worst symptoms are dealing with multiple infections).  My treatment is ongoing and is at about two and half years of oral antibiotics.  In that time I have recovered enough to resume full time work and overall deal with less symptoms day to day, but as you can tell from above I'm still affected and have a lot on my plate.

I would continue with the mainstream work-up and differential diagnosis, but if nothing comes up do keep in mind that many folks with Lyme fall through the traditional diagnostic cracks.  Often people with chronic Lyme are accused of being crazy or malingerers, and that stigmatizes the disease.  But if you look into it further you'll find many cases that shatter that false image.

One valuable resource for me was the book "Cure Unknown" by Pam Weintraub, a scientific journalistic who was also personally affected by Lyme.  The book goes over the history, controversy, and personal stories of Lyme.  You may also want to watch the Lyme documentary Under Our Skin, which can be streamed through Netflix and is also airing on some PBS stations.  (I personally like the book better as the films presents a lot of information but doesn't help the viewer navigate it all, whereas the book is more explanatory.  The book is at many libraries or can be bought in paperback online for about ten bucks.)

I hope your doctors can help you find a satisfactory explanation for your illness and that you feel better soon.
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Avatar universal
The first weeks after I went gluten-free were the worst, because it's analogous to withdrawal from an addiction -- which it is, a chemical addiction.  I was a bread junkie, and now don't miss it at all.  Part of it was also the yeast in the bread feeding my systemic yeast infection, so hard to parse it.

Try eliminating one at a time the foods that make you feel fatigued and foggy -- that way maybe the withdrawal won't be so painful.
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Avatar universal
Wonko

A lot of your symptoms sound similar to mine. Especially the afternoon fatigue. I think my issues could be food related, but I keep going back in forth between multiple health related diseases/issues. Can you give me a summary of what tests you have done? Possibly a timeline of when it all started. Did your symptoms start after an upper respiratory infection?

I'm currently being tested for adrenal insufficiency, lyme, lupus, etc. I don't think my doctor believes there is anything wrong with me. I tried a gluten free diet. It is an extremely difficult diet. I only did it for a month. I might try a food allergy panel next. I feel much better if I fast. When I eat certain foods, I feel extremely fatigued and have visual and cognitive issues.

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428506 tn?1296557399

I know lots of people who adapt such a diet end up loving it, but yes, everyone is different.  He didn't give me the impression that yeast is a major culprit in my case, but your story is a good warning that for some it can become a major issue.  And I can certainly do more to protect myself against it.

Overall, re-reading my post and reflecting on my appointment, I'm glad that my doc take into account the "big picture."  Certainly trying the gluten free diet might be a piece, but his overall message was that I'm clearly "stuck" and therefore we're going to try a new diet, new abx, and new supplements.  

Lately I've realized, as have those folks who know about my day-to-day issues, that I'm "stuck."  I haven't made gains in my recovery in awhile, and if anything, certain issues seem worse than they have been in the past.  As I often note on this forum, I'm extremely glad to have undergone treatment as I've made undeniable progress towards recovery.  But there is still a lot going on in terms of my health, and it was a huge relief to me that my LLMD identified that situation.  

I think sometimes, between how long it has been and how glad I am to have made certain improvements, I kind of settle and think "this is just how it is" and lose site that I can expect more.  So I'm glad to feel a bit revitalized and ambitious to push for more gains in my health.  Recently I've felt a lot of despair, so hopefully I can hold on to this more positive outlook and push for some improvements in my well being this summer.
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Avatar universal
Wonks,

What an odyssey to get to your appointment!  Good for you for making it through.

Your doc sounds very thoughtful.  I second his motion for consistent use of supplements.  I keep mine in the fridge (some of them like probiotics need refrigeration to stay potent, and everything lasts longer in the fridge anyway), in two trays:  one tray has the stuff I take once a day, the other tray the twice-a-days.  Only takes a minute to take the pills out of the containers into a pretty little bowl to take with breakfast (from both trays) and dinner (the once-a-day tray).  Systematizing makes it easier for me to keep up with it.

I have had yeast problems from long term antibiotics, so I know the perils and how hard it can be to identify the symptoms.  I'm glad your doc is on the lookout.

One of the antifungal supps I take has L. acidophilus, biotin, a little calcium, garlic extract, barberry root, caprylic acide, calcium undeceylenate, and grapefruit pulp and seed extract (I won't post the brand name here), and in addition I take separate probiotics like acidophilus, but different combinations to keep the yeast guessing what's about to hit it next.  Every time I buy a new bottle, I make sure there are different probiotics from the last bottle, per my doc's suggestion.  For example, my current one has L. acidophilus, L. bulgaricus, and B. bifidum.

Also I had to stop taking a kind of probiotic that is yeast-based.  The idea is that the good yeast of these probiotics will crowd out the bad yeast that causes problems, like hiring one gang of thugs to keep another gang of thugs away.  Didn't work for me -- 'my' gang of thugs turned against me, which is uncommon, but did happen, just because of my personal immune system.

I was sufficiently beat down and scared by this event that I stripped my diet down to vegetables and proteins (eggs, meat, fish) and gradually added back fruit and non-wheat grains, particularly rice and quinoa, and sometimes corn.  Also, Wiki has a short writeup on gluten-free foods.  It sounds awful, but it's not, and the bonus is HOW GOOD I FEEL!!!  I also lost about 50-60 lbs of bloat and overweight, and have now held my current 120 lbs weight for well over a year.  I eat all I want whenever I want, am never hungry, and do not crave sweets or wheat at all.

None of this may apply to you or to others out there, because everyone is different.  But please take heart and know that losing wheat out of one's diet is not the end of the world.
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428506 tn?1296557399
Just an update to my update...My flight was cancelled so I'm stranded for an extra day.  Since it was due to weather I don't get a free room but I did get a distressed passenger discount on a swanky room with a view...
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