Tongue and Mouth wasting - How common? I am running out of TIME:(

[e138]

Hi everyone, I'm a 27 male insured by Kaiser. I am so scared of prematurely leaving my sister and mother. SOrry I just broke down, it just hit me.

ALS has already been ruled out, comprehensive tests have been done and I don't think I have ALS either. No MS either.

Main Symptoms:
Since Oct 2011 (at least first noticed):
Burning pain on palms, feet, back of mouth.
[b]Atrophy seen in tongue, under the tongue, tonsils, opening behind tonsils, roof of (soft palate), facial muscles, around the eyes
[/b], and also full body wasting in limbs, everywhere else.
Shooting drilling pain in trapezius (since 2006)
Blurred vision, constantly tearing up, noise sensitivity / like hyperacusis.
Had 3-4 bouts of pink eye since Dec 2005. Very concerning

Original symptoms:
2004 - it all started with a severe right TMJ pain
2005 - trapezius pain started; very bad conjunctivitis
2006 - rapid diffuse hair loss
2007 - massive acute headaches
2008 - same; strong smell in urine
2009 - same
2010 - foamy urine started; 2012 tested "normal"
2011 - muscle wasting rapidly progressed

Just started taking:
100mg x 2 Doxycycline for acne (could this work for Lyme too? I'm thinking of switching to Azithromycin.
PQQ, CoQ10, Magnesium (2 hrs apart from doxy),
Grape Seed Extract
Taurine

[b]My Questions:
[/b]
[b]1. Has anyone also wasted inside the mouth or just limbs and skeletal muscles? How common is it here among Lyme patients?

2. Can anyone recommend a doctor within the Kaiser system, North California? I know the horror stories. I was hoping there could be at least one good doctor :([/b]

:(  :'( Please keep me in your thoughts. I wish you all the best of health and never to experience what is happening to me.

Post edited by: emp185, at: 10/28/2012 11:04 PM

[mojogal]

Rico is right, 200 mg is low for Doxy. Usually something like Flagyl or Tindamax is used for cyst busting.

[Ricobord]

I forgot to mention...doxycycline does indeed kill Lyme spirochetes, but it doesn't kill them when they are hiding in cysts or biofilms, which develop several months or years after initial infection.  Because of this, it is often used by LLMDs in conjunction with other antibiotic(s) if you've had it more than a few weeks.  I think that 200mg a day is lower than what is usually prescribed for Lyme.

Did you feel any different when you started taking the doxy?

[Ricobord]

Sorry to hear about what you are going through.  It can be unsettling to have these symptoms and for doctors to come up empty handed for a diagnosis.

While I don't know about your urination-related symptoms, the others can be caused by Lyme.  But your collection of symptoms doesn't sound like any other case I have heard of.  I don't think Lyme has any absolutes, though, which is why it can be so hard to diagnose.

Note: I just googled "Lyme urine smell" and the WebMD symptom checker includes Lyme as a possible cause of cloudy urine with a strong smell.

In my originally consultation at my Lyme Literate MD, I was asked if I had any muscle wasting. Apparently they have seen muscle wasting in some patients, but it is uncommon. (Maybe it is a symptom that is only in a certain geographic area.)

I have not read good things about Lyme treatment at Kaiser, N.Cal. As far as I can tell, they follow the CDC testing criteria and the IDSA treatment guidelines, and it can be difficult to get an out of network referral from them.

I couldn't get diagnosed within my health system because I tested negative twice. I had to go out of pocket for testing at IGeneX and to see my LLMD. But once I tested positive at IGeneX and got my diagnosis, my doctor supported me and my insurance is now covering most of my treatment.

You might ask your Kaiser doc to authorize a Western Blot at IGeneX. If s/he balks, consider offering to pay for it yourself.  It would be worth it to get more information.

You can contact IGeneX directly to request a test kit and order form. Then, you take it with you to the doctor for authorization.

If your doc won't authorize IGeneX test(s), then get yourself to an LLMD as soon as possible.  You can contact the folks at www.lymedisease.org to ask for a list of Northern California doctors who are sympathetic to Lyme (will test for it and possibly diagnose it) as well as doctors who treat it. Not all docs are the same. You need one who really knows what he or she is doing. There are only a half dozen or so in the Bay Area.

[mojogal]

Doxy worked for me, now I am on Azithromax among others.
Take care.

[JackieCalifornia]

I know people who swear by Kaiser as the best there is, but also know people who have gotten pigeonholed within the Kaiser system, stuck with a diagnosis that no one goes back to reconsider.

If there is an effective appeals system within Kaiser, then ask your family/friends to get that moving on your behalf by filing the paperwork etc.

And even if the appeals process is moving along, I'd try to find a doc out of network and just pay for it, even if you have to borrow the money.

Best wishes -- let us know how you do --

[Stargazer_Lilies]

What specialists have you seen already?

While not common,  I have heard of some lyme patients describes the symptoms you have.  

Doxcycline supposed to work against Lyme too..but it didn't for me, at least not much. Azithromycin works better for me, in conjunction with Rocephin IV.