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Posted 5/15/2016 6:28 PM (GMT 0)
Hello,

At this point after doing tons of research online and filling out the forms for our upcoming LLMD appointment, I highly suspect that my daughter has lyme disease. We see the LMD tomorrow for our first visit and I just wanted to get an idea of what types of detox regimens are out there associated with Lyme disease.
It is interesting because when my daughter went on amoxicillin for a strep infection she had an incredibly horrible reaction and had to be hospitalized for nearly a week due to severe debilitating migratory joint pain, a rash and itchy hives all over her entire body plus abnormal behavior.
When she was diagnosed with lupus and went on heavy immunosuppressants, after 8 weeks she was unable to walk due to severe pain in her legs. And when she started the antimalarial drug her odd behaviors came back.
So it does scare me a little bit that if she does have Lyme disease or coinfections that the treatment might be really hard on her and I have read about herx reactions and the necessity for a good detoxification program.
She was actually hospitalized for a full week again in the beginning of March because of the walking issue but they ultimately diagnosed her with a somatoform disorder (psychological).
Now she is off all of the lupus meds but she has anxiety and continued pain, which keeps her from going to school one to two days per week and even on the other days she's uncomfortable but just pushes through it.
Anyhow, the doctor we are going to tomorrow is an M.D. but practices alternative medicine so I feel really hopeful that he can help us get to the bottom of things.
In the meantime I was just hoping to get some names of protocols or products that people use for detoxification so I can research them.
Thanks a lot!
Posted 5/15/2016 7:16 PM (GMT 0)
So very glad to help.

www.tiredoflyme.com/detox-methods.html

Also we have a thread on detoxing that members here use.

www.healingwell.com/community/default.aspx?f=30&m=3602759

You are so very wise to start her detoxing way before treatment. It gets the pathways clean and clear and able to handle more toxins.
Posted 5/15/2016 10:34 PM (GMT 0)
Hi Twin2jib--

"So it does scare me a little bit that if she does have Lyme disease or coinfections that the treatment might be really hard on her and I have read about herx reactions and the necessity for a good detoxification program."

--honestly, I don't think it's a matter of "if" she has lyme & co. Her other history you cited in your previous thread and symptoms and reactions to the abx and antimalarial are very, very strong indicators. The main indicators for me came from reactions to various rounds of abx I was prescribed for a sinus infection--next thing you know I had joint and muscle pain everywhere and breathing problems, anxiety, etc...

PeteZa shared good info on detox and hopefully some other parents will chime in on methods they used. I think you're right to be concerned about a strong reaction to treatment and toxin overload. I would carefully balance abx and detoxing... start detoxing slowly and steadily with one element at a time so you can track how she reacts to it.

And starting abx at low doses helps you match the rate of killing the microbes with the rate of flushing the dead debris out of the system as best you can. Incorporating one component of the treatment at a time, one component of detox at a time is critical in keep track of reactions. Hopefully, your LLMD will be receptive to a slow start since your daughter is young--for some reason LLMDs aren't always keen on low doses of abx to start with. Mine was and it worked out pretty well for me.

Do your best to control her diet, sleep cycles and make sure you're taking care of yourself, too. ;)

Good luck and let us know how the appt goes!

-p
Posted 5/16/2016 7:25 PM (GMT 0)
Well we had the appointment. I was a little disappointed the doctor didn't spend a lot of time with us (maybe 10 mins) and he just re-asked all the questions I filled in on the form so I don't think he spent much time looking at it. Also, when I named the immunosuppressant my daughter had taken by its generic name he asked what it was... The staff was friendly enough but I didn't feel the "welcoming family" attitutude as expressed on the website. It's just a doctor's office feeling with busy receptionists and waiting 40 mins for the actual doctor. I think I was expecting a day spa and a magician by the looks of the website!😆.
BUT the doctor did make me feel better by giving me a sympathetic look when I told him my daughter was diagnosed with a psychological disorder. AND he did say it sounds like a classic Lyme story and response...SO he ordered a full Lyme test (the $499 one with PCR and all the works). After all is said and done we paid $849- my thought is if we can pay that price to fix our cars or replace appliances we can surely pay that price to support our daughter's health!!
He also gave us a lab requisition so we could do the rest of the bloodwork through our HMO lab. So we will be doing CBC, CMP, ASO, Iodine, and Vitamin D.
Now we wait about 3 weeks!
Posted 5/16/2016 7:49 PM (GMT 0)
eyes "when I named the immunosuppressant my daughter had taken by its generic name he asked what it was... "
I always find that so disconcerting!!

I would so encourage you to get her detoxing if you haven't yet. With all that she's gone through, it's likely that she has a high toxin load and detoxing may help her feel better once she gets enough toxins moved out of her body.

Congratulations on getting the testing and I hope that the results are conclusive for her!!
Posted 5/16/2016 8:01 PM (GMT 0)
Twin2jib--

I'm sorry this was disappointing.

I'm going to cut to the chase --this does NOT sound like an authentic LLMD. There is no way a possible lyme & co patient can be effectively evaluated in 10 minutes. Due to the complexities of lyme & coinfections, the complexities of the vast impact it can have on our bodies and the symptoms that evolve, the critical aspect of the context of the body's health and immune function that are part of the diagnosis, the first couple of interactions w/ LLMDs are critical and 10 minutes is a huge red flag. And I also agree with your suspicion that no prep was done prior to your appt.

It's great that he got straight to testing (but also indicative of his lack of understanding of a clinical analysis--or maybe a lack of confidence in his own ability to clinically diagnose).

The costs you cited are not extraordinary for lymees, unfortunately. And it's awesome that you have a tool for more lab work. So those are GOOD things from your initial appt.

Once you get your lab results (which are an important part of her lyme & co diagnosis) and if he declares they are not definitive, patiently listen to what he has to say about your next steps. And please share with us!

But if there is still doubt or he has issues interpreting the tests accurately, or a willing to treat confidently, etc. (in other words--claims she's negative when it's clear that she's likely positive) please entertain the idea of moving on to a different LLMD or LLND.

A lyme & co diagnosis is best given from a clinical standpoint, and this guy doesn't seem to be a good prospect for that. That doesn't mean he isn't a good physician or caring. If she has lyme (likely) and if he's able to dx her and get a treatment started, that might still be beneficial and can tide you over until you can move forward. But unfortunately, this is a whole different ballgame and you need more than just a good MD. You need a specialist with experience and other tools available to him/her.

Just my opinion - anxious to hear what others have to say.

-p
Posted 5/16/2016 8:58 PM (GMT 0)
His website specifically and in detail states that he is a specialist in Lyme disease. He is an MD but practices alternative medicine including hyperbaric chamber treatments. Is that a typical treatment for Lyme? (There was a Lyme patient testimonial about it).
He was referred by ILADS.
I did get the number to another LLMD a few hours south of me who accepts HMO insurance so I may start the ball rolling there...
Posted 5/16/2016 9:12 PM (GMT 0)
I don't think you missed anything--you did your due diligence. Unfortunately, you never really know who people are until you meet them face-to-face.

And a lot of MDs and NDs and "specialists" are specializing in alternative treatments now, which is very very good. But because lyme is a surging condition, they're looping lyme into their practices. But that doesn't necessarily mean they make a good lyme specialists.

There are a LOT of treatment methodologies that can help with lyme & co treatment. But I guarantee you, a hyperbaric chamber, alone, won't cut it. In concert with specific other protocols and treatments, the chamber could be a good catalyst. But this guy barely even evaluated your daughter so I would be reluctant entrusting her entire diagnosis and treatment to him.

Granted, she hasn't gone 2 decades undiagnosed, either, so there is a difference in that type of chronic patient and someone who has been recently infected or recently showing reactions. But I just wouldn't take a chance with a child, especially with the red flags you noticed during your very first appt. Trust your gut.

So yes, I think it's a great idea to look into the other LLMD and insurance--what a bonus. Mine accepts insurance although I had to switch to the one plan she participated in but it's been worth it so far.

Please let us know how things evolve while you're waiting. Hope she gets some relief. You're a good mom. ;)

-p
Posted 5/16/2016 9:12 PM (GMT 0)
No, that's not a "typical" treatment for Lyme, but some do use it.

Why not go see the other LLMD and get another opinion? No harm done and you might find it easier to follow the other one.
Posted 5/19/2016 12:18 AM (GMT 0)
The initial blood work came back with some interesting outliers:

ASO (strep titer): 539 (norm is <=99) (she had strep nearly 6 mos ago and the titer has been high ever since then but it seems to have gone back up since the last blood test).
Abs Eosinophils: 572 (norm <500)
Vitamin D: 28 (insufficient) (norm >29)

I'm doing some internet research but does anybody know the (in)significance of these results?
Posted 5/19/2016 12:59 AM (GMT 0)
The abs eosinophils measures WBC count - they come into play with infections so it's good that her body is producing them, and the high count indicates they are actively fighting an infection. I think it's great that her viral load is being considered - some ticks carry viruses, we all have them in our bodies - many lie dormant until something like lyme & co opens the door wide open to reactivation and this can really overwhelm our immune systems when they need to be available to fight the lyme & co. And doing both simultaneously can make treatment very tough.

And the strep titers show that her immune system is still trying to fight off that infection. But it's also fighting everything else so it's probably overwhelmed.

Before my LLMD even started my treatment, I had high titers or reactivated titers for 4 different viral loads, plus a high yeast/fungal load so we got those way down and got the immune system supported before we launched into lyme & o treatment. I'm so grateful she did that--I was so sick and weak I never would have made it through even a month of lyme & co treatment back then.

Unfortunately, many lymees end up with low Vit D since the lyme likes to munch on it - some LLMDs don't want to supplement because they don't want to feed the lyme but others feel the detriment of low Vit D is a bigger problem so they supplement.

Hope this is helpful - glad you have more info to go on.

-p
Posted 5/19/2016 2:21 AM (GMT 0)
Thanks Pirouette! Your input is always so helpful!
Posted 5/19/2016 2:52 AM (GMT 0)
You're welcome! You're such a good mo.

I've battled viruses so much --kind of wish I didn't have to learn all this. And I've noticed that a lot of LLMDs don't look into them when cues of high titers are present (exhaustion, body ache, flu-ish, fevers, etc.) When treatments languish I encourage people to look into underlying challenges to the immune system.

-p
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