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keke99 07-08-2012 08:28 AM

Need LLMD in Upstate NY, near Oswego
Greetings to all,

Well... yesterday, I came to the conclusion that my son and I had Lyme Disease...

For me, symptoms started years ago with weird tingling/numbness at the tip of my lips and tongue. Had a bunch of tests done... nothing found. Then, I had a series of weird heart skips (which I can easily feel) that lasted months. Bunch of tests done, they "saw" those skips but determined that they were benign. But as suddenly as they came in, they eventually went away. Then, a few years back, I started having weird and cycling constrictions to my upper esophagus (still happening to this day). Did a bunch of tests... nothing found. More recently, I started having back pain problems around the kidneys and in the groin region. My back feels like sports related aches. 2 weeks ago, I had pain in my right testicles for a couple of days. I'm now scheduled for both an(other) endoscope and to see a urologist. Additional things I had noticed BEFORE KNOWING ANYTHING about LD included:

- Cyclic highly sensitive Lymph nodes in my neck and, more recently, in my groin area.

- We all have occasional ringing noise in our ears but I had noticed episodes where I'd get a lot of them in a short period of time.

- Muscle spasms all over my body, especially a few weeks ago. I had them in both my eyelids... then I'd have 1 behind the leg (weird place), then somewhere in my abdomen. They would sometimes last for as as little as a few seconds, to the all day recurring spasms (eyelids).

- Extreme headaches sometimes lasting 3 days, even after taking over 20 Tylenols/ibuprofen a day!

- Always tired. Need daily naps after work.

- Occasional episodes where I'd constantly have sore throat.

- A little carpal tunnel syndrome (which could be justified, considering my line of work)

- Cold feet (tip of my feet)

- I have "snapped" at my son, more often than I wish (anger, not physical).

- can't remember names to save my life.

So I was resigned to see the 2 specialists in the following weeks, not expecting them to find much.... as usual. Until yesterday, that is! Yesterday, my son told me about some weird feelings in his tongue. This wasn't the first time. He had mentioned that before, occasionally. I had even bought a water dispenser, thinking it could have been related to the house water. But unlike me, his episodes only lasted a couple of days and were few and far between. But yesterday, I specifically asked him how it felt and it was very similar to what I had. So I figured this was enough and concluded it couldn't be a coincidence. So I started Googling on this common symptom. That's how I landed on Lyme Disease. Then... total shock as I read other symptoms! Here's why (he's 7, btw):

- Numbness in tongue and sore throat. Ok... not the "interesting" part, but there.

- He's needed glasses since he was very little. Yes, that could be unrelated... but since LD can also affect vision... one must wonder.

- He almost always complains about belly aches after meals... sometimes, very intense belly aches.

- Not so much now, but a few years back, he was ALWAYS constipated. Sometimes requiring the use of induced methods to make him go.

- Hypersensitivity to sound. For years, my son has ALWAYS blocked his ears on medium sound levels.

- My son always complains about the sunroof in the car and always likes to pull the blinds down in the home office (where we end up too often...). He can play outside fine but it's certainly not something he loves to do. So there could be some mild photophobia there.... don't know...

- Over sensitive to temperature. For years, I had noticed that just mildly warm water temperatures were too hot for him. He's meals often need to be much colder than mine for him to find them ok.

- Overly emotional reactions... so much so, that I have been calling him drama queen for years as a result of it (in a humorous way).

- Short term memory lost. Sometimes, I'd ask him about something that he should so obviously remember and he couldn't give me an answer. I often got frustrated with him cause I couldn't possibly imagine he couldn't remember the event (whatever it was).

- A little verbal difficulties. He will often repeat the same partial sentence before his brains finally "unlatches".

- Sometimes when he reads, I have noticed that he'll kind of get blocked on some insignificant word... then he'll go.. "ok... ok..." and starts reading again. Kind of a mental blockage (He reads very well for his age, but these blockages seem "out of place").

- Skin/nails issues

- Can't stay focused on a task. We're talking about short term task here! I tell him to go put his shoes on to get ready to leave... he'll get distracted by about 12 things along the short way to the door... This is something I have been frustrated with many times before.

But here comes the more interesting parts...

- It took him unusually long to start walking, as a baby.

- I remember all of his joints popping when we'd pick him up, as a baby.

- He's had birth defects to his knees called Lateral Discoid Meniscus. He's had both of his knees operated on since, to correct the problems. No history of such disease on either side of his parents.

- Clumsiness and poor gross coordination. He's only been able to jump down (with both of his legs) a 1' high step in recent months! He's doing much better now, but I have to motivate him. It's not natural like in other kids. But very little coordination at pretty much any physical activity. This is not the result of an overcritical father.... These are just facts and I have learned to lower my expectations in that regard, a while back.

- I found that LD could also explain autism like symptoms. My son is a little different. It's really nothing much and he's a very smart and adorable boy... but you can tell he doesn't behave like other kids in most circumstances.

It's important to note again that I had noticed all of this BEFORE knowing anything about LD. So I'm not trying to retrofit the symptoms based on my new knowledge of the disease. Soooo.... considering all of this (especially the last 2 bullets), you can see why I'm now extremely anxious to find an excellent LLMD in my area. I'll drive a few hours if need be!

So please... can anyone refer me to a good specialist? I've read from Dr. Charles Ray Jones that sometimes, a milder long term solution on antibiotics may be preferable to a shorter term aggressive approach. Any inputs on that?

Sorry for the long message… but I hope it can help others, at least.

Thanks in advance!

jojo 07-09-2012 07:33 AM

Re: Need LLMD in Upstate NY, near Oswego
[COLOR="Purple"]Sounds like you may of hit the nail on the head. There are a few LLMD's in your area. They normally don't take any type of insurance. So will be out of pocket to see them.

There are 2 threads above, How to Share LLD's Names. and Lyme Newbies. They will help direct you in finding a doctor.

Because Lyme doctors are constantly fighting to keep their license we can not put their names on the board.

But from where you are sitting you could find one by city, county, state.

There could be the possibility that you or your wife had Lyme, and passed it on to your son. Yes that does happen.

Hope you get to a LLMD soon!


keke99 07-09-2012 02:53 PM

Re: Need LLMD in Upstate NY, near Oswego
Hi Jodie,

Thanks for your input...

I was wondering about that... cause the only thing that didn't work in my analysis was that my (ex) wife does not show any apparent symptoms... (not any that I could blame on that anyway :) )... but everything I read always mentioned the mother (not the father) passing on the problems to children. So do you know for sure if this can be passed by the father? It would explain the one thing that didn't quite line up with the facts.

I did see my regular physician today and he's on board with following this lead. Apparently, I was tested back in 2009 for this and came back negative... but I told him that these tests often came back with false negatives and he was quite open minded to all of it. I also told him I wanted to see a LLMD, not just some disease doctor... again, he was on board with it. Finally, I told him about sending the blood test to that Californian lab I read somewhere here.... Again... he's fine with it. I've got his personal email and will be sending the info, as soon as I find a good LLMD and the lab name again.

I still don't understand the whole stigma surrounding this disease though... neither did my doctor!

Finally, I did read the newbie section yesterday.

Thanks again...

jojo 07-09-2012 03:20 PM

Re: Need LLMD in Upstate NY, near Oswego
[COLOR="Purple"]It is not totally proven, but there have been testing done on sperm and the bacteria has been found in it. Also I have talked to a few couples on this board and other places that they feel one has passed it to the other and they keep passing it back and forth.
It is said the the Borrelia Burgdoferi bacteria is in the syphilis family. And is harder to eradicate than syphilis.

You want to contact Igenex Lab, in Palo Alto Ca. You can find them from where you are sitting. And request a test kit. You can talk with someone and ask exactly what you should be tested for. There are over 300 strains, of the bacteria. So it does help if you let them know where you live, and places you have visited.
You might want to be tested for co-infections such as Babesia, Bartonella, Erichilosis, Mycoplasma Pnumoniae, Chlamydia Pnumoniae, and viruses such as Epstein Barr, Cytomeglovirus. There are other things that you could be tested for, so one of the big reasons to see a LLMD. They go mainly on clinical symptoms and not solely on a lyme test.

There is a documentary that you can either order or you can watch it on Netflix or Hulu. Called "Under Our Skin". It might help you understand a little bit of the political controversary surrounding Lyme and all of this mess.

There is also a book you might want to read, Lab 257, it is about the happenings on Plum Island.
That will help you understand some of it too.

Not many Lyme docs out there. They are constantly being harrased for long term antibiotics.
You'll understand more as you get further into finding help and reading. :)

I wish you luck on finding the right treatment for what ever ailes you and your son.

I am glad to hear your doctor is on board with all of this. Many aren't. Remember NO infectious disease docs. Many are not lyme literate and will only delay the treatment you need. (If you have lyme).


keke99 07-09-2012 03:28 PM

Re: Need LLMD in Upstate NY, near Oswego
I'm not much into conspiracy theories and voodoo like treatments... I'm the Atheist kinda guy... so I hope the controversies surrounding this aren't related to that sort of thing. In any case, I'll give that movie a try later today, when my son goes to bed.

Thanks much...

jojo 07-09-2012 04:46 PM

Re: Need LLMD in Upstate NY, near Oswego
[COLOR="Purple"]I believe in biogerm warfare and all of that. Not too much conspiracy behind it. It is what it is.... :)
The documentary isn't for little ones...

Hope you find your answers soon!


keke99 07-09-2012 07:53 PM

Re: Need LLMD in Upstate NY, near Oswego
just noticed that little button, there....

jojo 07-09-2012 08:24 PM

Re: Need LLMD in Upstate NY, near Oswego
[COLOR="Purple"]Your Welcome...:)[/COLOR]

keke99 07-09-2012 09:55 PM

Re: Need LLMD in Upstate NY, near Oswego
Just finished watching that movie... that was a hard movie to watch and it's a good thing that it ended on a more positive note... cause I gotta say, that was freaking scaring at the beginning (not so much for myself, but for my son)!

jojo 07-10-2012 06:27 AM

Re: Need LLMD in Upstate NY, near Oswego
Lyme can mimic 300 and more conditions. Such as alsheimers, parkinsons, ADD, fibromyalgia, chronic fatigue, heart problems. on and on.
At one point I was wheelchair bound, they had to put it in my file that I was mentally off because of what I had. And NOT to send me to a mental institution. I was in ER a few times. Not a fun thing to go through. I hate seeing others go through it.
Not everyone has the same symptoms. Some have only one thing that bothers them. Others like myself have had just about all the symptoms that lyme can display.

I think that pursuing this is a good idea and get the both of you tested thru Igenex and to a LLMD.



keke99 08-10-2012 08:20 PM

Re: Need LLMD in Upstate NY, near Oswego
Well... the results from IGeneX are in...

for myself:
31 kDa + (**)
41 kDa + (**)
58 kDa +

23-25 kDa IND (**)
31 kDa IND (**)
39 kDa IND (**)
41 kDa ++ (**)

for my son:
31 kDa IND (**)
41 kDa IND (**)

31 kDa IND (**)
39 kDa IND (**)
41 kDa ++ (**)

According to NY State, we're both negative in both tests. According to the Lab, I'm positive on the IgM and negative on the other one. However, there's a statement in the report that says "a single positive band or a single IND (Indeterminate) band may indicate clinical significance". We have plenty of IND! So the following questions come to mind:

1- How common are IND in these sorts of results?

2- Can the IgM results be crossed-referenced with the IgG results? I.e. both official results are from 1 IgM or IgG test... but the bands on both IgM/IgG tests line up pretty well for both of us, and between the 2 of us as well! For instance, band 41... I have IgM +, IgG ++ and my son has IgM IND, IgG ++. And for all of my son's IND, I have either an IND or a +... This can't be a coincidence!

so I'm looking for any inputs on this...

Also... I still haven't found a specialist in my area. I have written to someone from "CNY chapter of the Empire State Lyme Disease Association" and got 3 names... but they led to nowhere. So now, more than ever, I'm also looking to get some names around upstate NY... I'll travel if I need to.


jojo 08-10-2012 08:33 PM

Re: Need LLMD in Upstate NY, near Oswego
[COLOR="Teal"]I have always heard, IND mean, slight positive. so you count those as positive...

Remember you can't go solely on test.

Re-read How to Share LLD names and Lyme Newbies. We can't share names on the board.

It sounds and looks as though both of you need to get to a LLMD.

Also above there is a thread that has what the bands mean. Lyme Disease Information Thread.


keke99 08-10-2012 08:53 PM

Re: Need LLMD in Upstate NY, near Oswego
I had seen that post before, but it didn't mean anything at the time... and forgot all about it... thanks for pointing me back to it.

keke99 08-10-2012 08:54 PM

Re: Need LLMD in Upstate NY, near Oswego
and if IND can be counted as positive... then we've hit the jackpot... so to speak...

jojo 08-11-2012 08:54 AM

Re: Need LLMD in Upstate NY, near Oswego
[COLOR="Teal"]It may not be the jack pot, but I feel you have found your answers....:)


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