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

[youvegottobekidding]

What you have described is not lyme disease. It doesn't cause atrophy at all, or quite a few of the other symptoms you've described.

I think you could possibly have syphilis. I would ask to be tested for that just in case. (People think you can only catch that sexually but that's not correct).

Also, a lot of your symptoms could be motor neurone disease. There are 3 types of this and one causes the wasting you described and the tearing up, and actually a lot of the other symptoms. I would read up about that too.

I hope you get a diagnosis soon, I know what it's like living with the stress of not knowing what you have. It sounds as if you are putting up with something very nasty indeed and I wish you the best of luck in finding treatment.

[Stargazer_Lilies]

ALS is one of motor neurone diseases, and it sounds it has been ruled out.  

[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.

[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 --

[mojogal]

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

[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.

[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?

[mojogal]

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

[nutrinut_bob]

I was reviewing my paperwork from the hospital stay I had last year and noticed they said I previously had a tonsillectomy.  No, I never did!  Whatever I have, which hasn't been positively identified, removed them for me.  After all I've learned on this journey, I strongly suspect toxoplasma gondi, and more than one strain.  I'm getting a very positive response from what one Dr. referred to thusly:

Toxoplasma gondii are particularly susceptible to oxidative damage, so juglone may be a specific herbal treatment for this parasite.

Juglone is a chemical found in black walnut hulls.  It's slow going, because the microvermin have a way to detoxify Reactive Oxygen Species, but it's working.

[ice889]

what motor neuron disease causes even half these symptoms besides the muscle wasting?

[youvegottobekidding]

There are 5 subtypes and they have varied and overlapping symptoms.If you want to know more about them, you could start with the Wikipedia articles on each one, there are links here
http: //en .wikipedia. org/wiki /Motor_neuron_disease
(remove gaps from link, obviously)

Amyotrophic lateral sclerosis has a lot of overlap with these symptopms, excluding the conjunctivitis, hair loss and smelly urine.

Are you worried you might have motor neuron disease? You cold contact the association
http: //www .mndassociation. org/

[ice889]

somewhat, but also was confused by your post as i never knew any motor neuron disease could cause pain and/or headaches either (not being sarcastic was just unaware of this if this is the case)

[ice889]

also the blurred vision i didn't think was a symptom of a.l.s either?

[youvegottobekidding]

It sounds as if you need to get onto a motor neurone disease forum.
On this forum we know all about lyme disease and other tick borne diseases, and you probably won't find the detailed knowledge you're looking for.
Good luck!

[mojogal]

I have the blurred vision too.

[ice889]

diagnosed with a motor neuron disease?

[ice889]

well i havent been diagnosed with an mnd yet, but having basically the same symptoms as the original poster, i'd like to believe i have lyme or some other issue. the issues such as blurred vision, headache, and pain with the things keeping me think it cant be mnd in my case or the original posters and possibly thats why it might be lyme disease or some other ilness is what i was thinking. then when i saw your post, it through me off because i did not know mnd's could cause those symptoms too.

[Ricobord]

Lyme Disease can mimic many other medical conditions. A good sign of Lyme is that doctors can't find answers, having eliminated the more obvious choices. But not everything is Lyme. Even if you think you might have Lyme, it is good to get checked out for whatever else can cause your symptoms.

If you think you might have Lyme, definitely get tested. IGeneX is the best lab.  You are less likely to test false negative there. To get diagnosed and treted properly, you will need to visit a LLMD, a Lyme Literate Medical Doctor who knows how to recognize Lyme and possible coinfections. Most doctors are uninformed or misinformed about Lyme and other tick borne diseases.

[youvegottobekidding]

I agree with Rico that, if you have any doubt, get tested for lyme anyway. But what I think also might be useful is to start a new thread listing/describing all your own symptoms in as much detail as you can. Most people with lyme disease have one or more other tick borne infections too, which can confuse the issue, but between us, I think we could pool a lot of useful obsevations about possiblities for you to read up on. Unfortunately, the majority of us have had to learn a lot about lots of illnesses while trying to figure out what we did or didn't have wrong with us before we eventually got a diagnosis.
One question: do you have tongue wasting like the original asker? Because lyme disease absolutely definitely doesn't cause that. It doesn't cause wasting of any muscules (other than deconditioning and loss of muscle tone as a result of being too tired to exercise).
Pain anywhere in the body, and headaches, are very common symptoms of lyme and many other tick borne diseases, on the other hand.
Blurred vision is fairly common too. I hav that but the main characteristic of blurred vision in lyme is that it keeps waxing and waning: It can be fine the mornign and then too bad to drive in the afternoon, for example, then OK by the next morning. This endless changing in short time periods happens with a lot of the symptoms of lyme disease. Details like this are not the kind of thing you can usually find online in a list of symptoms but if you give a detailed description we can tell you if it fits or not.

Good luck and I hope we can help you.

[e138]

Hello everyone, I just wanted to update. I'm sorry it's the first time I read all of your messages. I am so scared for my life.

I had an IGENEX tested. I tested POSITIVE for both IgM and IgG on IgeneX standards but ONLY the IgM tested positive for CDC "STANDARDS" according to the Igenex paper.

Now  I said I'm still under Kaiser and the infectious disease doctor I spoke to, Dr. ****, said Igenex is being laughed at, and that I should have had IgG tested positive in CDC standards. Even if IgM was negative, a CDC positive IgG alone would lead him to believe I might have Lyme but I'm not sure if I remember his words right. I will ask again about that.

Now I've never thought I have Lyme, this is very controversial I know, and I am a rational person, I take both sides of the issue. He says Igenex has a lot of powerful people lobbying for them so they are able to still practice. On the other hand, I also have my own doubts that this could be anything else.

EMG tests are negative. Physical neuro tests are negative. I am losing muscle and tissue rapidly as the days go by. I will try the doxy but when I took it earlier I had severe itching to it. Now I read that it could be "herx" reaction? Is this correct? Im still taking Azithromycin. The itching has subsided and only gone to the feet.

I have run up all my savings after 8 years of finding out what this is. :( Anyone know a charity or something or a low interest loan I can use to go to a LLMD since they don't accept insurance, and that Kaiser only covers doctors within their network.

PLEASE KEEP ME IN YOUR THOUGHTS. I have a sister and elderly mother to take care of.

[JackieCalifornia]

Welcome to MedHelp -- I am sorry to hear all that you are going through, but you sound like a strong person to have gotten through this so far, so just keep plowing ahead.  

There is a big split in the medical community about IGeneX labs, and as you can see, there are some docs, like the ones you have seen at Kaiser, who do not take IGeneX seriously.  That's too bad, because IGeneX has tests based on a different approach than the ones Kaiser appears to be using.  

I was tested by IGeneX as well as at LabCorp, and was fortunate that both were positive, but I also had an MD who took IGeneX seriously.

Whether you were positive on both IGeneX IgM and IgG is not important, to my understanding.  IgM and IgG antibodies appear at somewhat different times in an infection, so that the docs can tell about how long you have been infected.  That you tested CDC positive is significant, to my understanding -- even if you were positive only on one of the tests:  it is a matter of timing in the infection, because IgM antibodies appear earlier in an infection, and IgG antibodies tend to appear later in an infection.  But both are useful data points to a doc who knows how to read them.

Whether you are having a Herx reaction to the treatment, I don't know.  There are often several things going on in a Lyme infection, whether it is an allergy to the particular antibiotic, or because of another infection carried by the same tick that gave you Lyme, or a reaction to the bacteria being killed.  It takes a knowledgeable MD to tell you what medication is best, and even then, Lyme is a tricky infection to test for, to diagnose and to treat.

A Lyme specialist could well say that given how long you have been ill, taking only doxycycline or amoxicillin is not enough, because the Lyme bacteria have the ability to hide in cartilage where your immune system cannot find the bacteria, and they can also form slimy shields to hide in that need particular antibiotics to break through so the other antibiotics can reach the Lyme bacteria.

Things are more complicated than your doc understands, from what I have learned.  No one here is medically trained that I am aware of, so you need to find an MD who understands Lyme and its co-infections better than many docs (like yours) seem to do.  That is what I would do in your situation.  I don't know that your Kaiser doc will change his mind and try a more broadminded approach; it doesn't sound like he works that way, and Kaiser is pretty regimented from what I read.

Others here may have ideas on how to deal with the Kaiser hierarchy, or how to go around them.  You are in luck in one way:  it looks like you are in California, and there are docs here who really do understand Lyme.  

We do NOT post doc's names here in the open, because some docs do not want to get a reputation as being too broad minded about Lyme, which is one reason your doc's name is blocked out with asterisks above.  

--->>> If you would let us know generally what area of California you are in, we might have some suggestions of doctors you can get to, and we can send you that information through the private message (PM) system here.  

All that said, I think your Kaiser doc is a jerk, but that's just my personal opinion.  Also know that ALL infectious disease specialists don't much believe in Lyme, whether they are Kaiser docs or not, so you are not alone there.  I don't have Kaiser, but it took me 20 docs to finally get a diagnosis, so you are farther along than I was.

Hold fast, don't give up!  You are clearly a strong person to have persevered this far through Kaiser, and good for you!  

I wonder if you can get Kaiser to reimburse for a second opinion, since you have a positive test result?  ALWAYS get hard copy of test results, so that you have a complete set of them yourself.  I find it very difficult to be sure I get a complete and full set of things from docs later on, because if I don't have the file, I won't know what's in it that is missing.  Catch-22.  Future docs may find old tests useful to track changes and test levels.  Lyme is a complex disease, and prior data can be very useful to a doc who knows how to read it.

[Ricobord]

I am so sorry you're struggling with this. Unfortunately, it is the Infectious Disease doctors who continue to bad mouth IGeneX in remarkably untrue ways.  Your doctor is essentially saying that the CDC is allowing an incompetent laboratory to continue to perform authorized testing only because of the power and influence of its supporters. Even I don't think the CDC is THAT corrupt!  

In reality, IGeneX has to pass any and all CDC audits that are also required of other labs. IGeneX has even passed extra requirements from certain states, such as New York.  They can give you information on this if you ask for it.

The Western Blot is not a lab specific test, although labs can use different test kits.  IGeneX uses their own, while others mostly use commercially mass produced kits. Each labs's execution of a Western Blot test must pass muster with the CDC before they can offer it.  Infectious Disease doctors will not accept IgeneX results because it would force them to admit they are wrong about testing and disease definition. Instead, they dismiss everything IGeneX does as "unreliable."

I don't know if this will help you at all, but you might be able to show a doctor this new legislation in VA requiring doctors to inform patients about potential false negatives on blood tests.  This law just passed today. Hopefully this ugly link will work!

http://campaign.r20.constantcontact.com/render?llr=agqlzxdab&v=001CYMvdQv4AOgG-LXgOMLFoUJAuwLruFjjjrjwT3B8q73SRPGMvLGFOqj6vkRf7HH-fGaIllx9ROL4OJD41AMkMHGnq2-wpJGWULXK9nWCNKRlCvfM3nhYp0UPvJcFpX-nucXC4pucTJ3l6DE_97aEqEaCkjCrNPVqCiSYI-wNPlVt0ys5-BZLNwiGZeKpCXDFtYpmNuDIcvUzyKmpOiO3MXsy7Le3JXOFp_VmKsjbeaWW_HP5gVpxe3Vzo3qstAX6ocUcQgxhZLp5l7z5QVUMNBo4apEmohvOhc8wj-2jK81uf19IVDgRt39RgvNNcf6jHt3-A4OhyxD0TrgxeuSkeZ8LCFWAw1IAir6xCWfyzgx0yrd7pmpAuCyhrC7j3eDtc0BOU5XXKArQi1EpiZDR30_VkE-UnruZNVrEdv21B6dVbd43D8nIfSo0or53-o_3b_MLQaECbLI%3D&id=preview

Your ID doc is quoting the official dogma of the IDSA that after a month of Lyme Disease, your immune system will convert from making IgM antibodies to making IgG antibodies.  Unfortunately this is a BIG assumption that the IDSA confused with fact.  There is not any scientific evidence proving that this is the case. It is extremely difficult to get an ID doc to think any differently though. They can be disciplined by the IDSA for violating the guidelines, even though they're called "voluntary."

After six years, I only showed antibodies on the IgM as well. I was very sick when I was tested, so the whole IgM/IgG assumption failed me, too.  There is no doubt I have Lyme, especially since I have two coinfections to go along with it! It might be interesting to ask your doc how you could show Lyme specific IgM antibodies without having Lyme. The nature of the WB test is that it can't show antibodies that don't exist. In reality, false positives are very rare indeed.

Sometimes you can find a neuro or rheumie who is willing to give some leeway on tests and make a diagnosis. They are not under as much scrutiny as ID docs.

Do you mind sharing which bands you got on both the IgM and IgG?

[e138]

hi rico im losing hope as the days go by sorry if i sounded like a total nonnative english speaker, i just read my previous post, grammar was horrible. i don't think it's any different this time. i feel so exhausted and for the past week now, my vision has blurred tremendously, with burning pain and sensitivity to brightness.

This is such a sad sappy story. I never really saw myself having my own family for the longest time. My whole mission in life is get out of poverty and buy my mother a house fully paid and be the father figure for my little sister and this BS happened. once i've done that, i don't care anymore what happens to me, Lyme or otherwise. I don't want them paying even more for my medical bills if i ever die.

Bands
IgG:
18
**23-25 kDa
28
30
**31 kDa: +
**34
**39 kDa: IND
**41 kDa: ++
45
58 kDa: +
66
**83-93

and for the IgM, will this link work?
http://cdn.mdjunction.com/components/com_joomlaboard/uploaded/images/igenex_igm.jpg

I'm in the bay area, I've learnt about 3 MDs around the region but I haven't spoken to one yet as i've been so discouraged by the hefty bill, i know it should be a no brainer to get on the phone and have an appointment, but the price tag attached to it just gets the better off me. Please keep me in your thoughts guys

P.S. I also just had a gall bladder surgery cholecystectomy, I read up and people say this is also linked to Lyme.

Side note: I started having gallbladder symptoms after I started the Paleo/Low-carb diet thing in 2010, same time when I took Carnitine and D-Ribose and also when foamy urine + burning pain around kidneys, were first observed.

late 2011 I took Anastrozole / Arimidex low dose and this muscle wasting began. Anyone know anything about this?

[JackieCalifornia]

Hi -- just a quick note to say, if you aren't ready to do the whole Lyme-doc-appointment thing, you could just see an ophthalmologist if you want your eyes looked at since you're having some issues.

I was very surprised when I went to see my ophthalmologist (an MD who specializes in eyes) for a regular check up and started explaining Lyme disease to him and how I know lots of docs think it's a small thing and blah blah, but of all the docs I saw (other than my Lyme doc), the ophthalmologist was the most up to date on Lyme issues.

It was great, not having to explain -- and great to be taken seriously.  It seems that ophthalmologists of all the specialities are clued in.  Yay!  If you have insurance, it will probably cover an ophthalmologist visit, since s/he is an MD.  

My eyes were fine, which was a great relief -- I wish the same for you.