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Old 04-02-2013, 04:50 PM   #1
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Could I have Lyme Disease? LLMD Necessary?

Hi all,

I'm a little stuck on what is going on with me so I'm going to take sometime to describe whats been happening to me. Please bare with me as its been a good amount of time and I may forget some significant details.

Alright so first let me give you a brief over view of my life:

I was a boyscout for about 6 years. So I had a lot've exposure to the woods

I live in the boonies.

I have been "sick" for about 2 1/2 years

So it all started years ago with what I thought was a bad "bug". I was throwing up for a week and felt fluish where it resulted in blacking out in my own vomit and going to the hospital. After getting the IV, I began to feel exceptionally better and returned home.

Not long after that I began to feel tired almost all the time and muscles began twitching everywhere. After doing my online research and remembering scouts coming back covered in ticks, I decided it was a good idea to go talk to my doctor. When I went in for a sick visit, I didn't see my doctor, I saw one of the nurse practitioners there where she stated "Nothing that you are saying to me is related to lyme". At that point I was like hmm.. well I guess what I read was false. I returned home and lived like that for a while with no sign of recovering.

Yet again I made an appointment with my doctor and I begged him to test me for lyme along with a number of other blood tests, This was july of 2011 I believe. All tests came back normal.

Around this time I began experiencing a lot of stomach issues, with constipation and acid reflux. The doctor said that maybe that week i got sick did so much on my stomach that it was hard to recover. This is where i started my first miralax and acid reducer diet. With no results. I went back to him and we tried a few other medicines that didnt work, he decided to have a stomach tube down my throat and pump fluids down my throat to "unclog" my intestines.

a while after that(this past summer) I began to recieve joint pain. Then I went to see a Rheumatoid Specialist, This was after I had been diagnosed with mono by the way. But I had the joint pain before Mono. I just dealt with it. When he said that I probably still had an infection linguring around in my system and I had chronic fatigue syndrome or something of that nature. He wanted to prescribe me with sleep meds, when the by standing nurse said thats not necessary.

So, SO FAR, I have chronic stomach & esophageal issues , Joint pain and fatigue and troubled concentration .

Now alopecia!, SO not only am I miserable from being tired and not feeling well, Now i'm losing my hair and continue to lose hair to this day.

After this I began to feel hotter. When I worked I felt hot continuosly as I worked It felt as though it was getting harder and harder to work.I struggled to finish the job at hand.

So come December 30th, I made my biggest mistake. I decided to go to a concert of the hardcore genre of music. I was out on the floor enjoying one of the opening bands before the main act I was knocked unconscious. how? I have no idea, as the incident left me with no recollection of what happened but the next thing I remember is my friend dragging me out, me slowly gaining consciousness with anger and confusion. When I fully regained my composure. I looked for a mirror to see what had happened to me. I went to the bathroom with my friend, but NO MIRRORS! My friend then bought me a hotdog which I ate with blood dripping into it (fun stuff).

After all this I went to speak to a paramedic, because the staff was not aware of my incident until now. The paramedic asked me questions to see if i had a bad concussion I answered them successfully and he said I could head back in. At this point In time I decided to take upon myself to call my mom because I didnt think it was a good Idea to go back.

She picked me up took me to the hospital where they found I had a broken nose(maxilla region) and a pretty busted up lip, but other than that my brain looked fine and I should be ok.

Right after that I went right back to work and school. No real issues just an odd shocked feeling. I hung out with my friends. I drove. I did pretty much everything I normally did. Till a couple weaks later. Wheere I started to get an over all feeling of being ill and pressure(which would later be called a headache) in my head. I thought it was sinus pressure. I was then diagnosed with a sinus infection and inner infection. Anti biotics didnt heal these issues.

I went to a hospital, one of the better one's around, where they diagnosed me with Post Concussive Syndrome. Stating that it could last from 2 weeks a year and gave us very little indication of what to look out for and when I should be worried. SO this was very stressful.

One night i had pins and needles all over the left side of my body, Struggled speaking, Had a dry mouth. I THOUGHT I WAS HAVING STROKE. But my mom told me to go back to sleep which was pretty much non existant at this point.

SO I went back to the hospital and got admidted where they did MRI's with and without contrast, CT's with contrast and xrays and an EMG, to make sure I wasnt having seizures or stroke.

They sent me home saying we still think you have post concussive syndrome it can last 2 weeks to a year but dont return to your daily routines until you feel 100% better. Well 4 months later my symptoms have stayed the same and worsened. Ive had painful twitching on the back of my head. Myoclonic Jerks, what appears to be occipital and parietal nueropathy where theres pain in my eye wrist and elbow and numb pinkies and numb pinky toes an stinging in the tip of my penis. burning in my legs and arms. Now i cant tell whether my limbs are cold or not because they always feel warm but when I touch with my hand they feel cold

So now im left with no doctors note, unexcused school absences, and all these annoying issues that make everyday dreadful

My theory: I've had lyme disease causing all those issues and getting all these neurological symptoms quicker as a result of getting hit in the face.

For those who read this im sorry it took so long. and I hope you can help me

Last edited by Administrator; 04-02-2013 at 09:33 PM.

 
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Old 04-03-2013, 06:18 AM   #2
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Re: Could I have Lyme Disease? LLMD Necessary?

Dylan:
I think you have lyme. You must go to a Lyme Literate Medical Doctor (LLMD) immediately. I see one in Fairfield Ct. His prices are reasonable. Most of them don't take insurance. But regular drs don't know anything about Lyme. Also, you have to get your blood tested from a company in California, Igenix. They will send you the kit. You need a script from your dr and go to a lab with the kit. I hope this helps. LaLa

Last edited by Administrator; 04-03-2013 at 07:19 PM.

 
Old 04-03-2013, 06:48 AM   #3
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Re: Could I have Lyme Disease? LLMD Necessary?

Hi lala,

This will take some convincing of parents. They have trust in my doctors so its hard for them to understand I've done my research. A script from the LLMD? or my primary care is needed? Any advice?

 
Old 04-03-2013, 07:13 AM   #4
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Re: Could I have Lyme Disease? LLMD Necessary?

Dylan- Once you go to the LLMD, he or she will guide you through the steps. May you
have the best of luck convincing your parents, usually we as parents are willing to do anything to get our kids well and I am sure yours are no different. LLMD is a Doctor and God Bless you on your Journey, its a long one but will be better!

 
Old 04-03-2013, 07:14 AM   #5
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Re: Could I have Lyme Disease? LLMD Necessary?

You can go to any doctor for it. What do your parents think?

 
Old 04-03-2013, 02:06 PM   #6
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Re: Could I have Lyme Disease? LLMD Necessary?

My mom thinks that it is post concussive syndrome and that you guys may have read my story wrong. When I said "remembering scouts coming back covered in ticks" I wasn't talking about myself I was talking about other scouts. But I figured having long hair, I may not have noticed.

 
Old 04-03-2013, 02:31 PM   #7
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Re: Could I have Lyme Disease? LLMD Necessary?

Dylan- you can get Lyme from mosquitoes, flies, any type insect that comes
into contact with another that has Lyme Disease. I am 56 and went for years and years with problem after problem since my Senior year and just found out two months ago what was wrong - I had no idea what Lyme Disease was. What a way to find out!!! My family thought I was crazy, and i kinda was since everything goes wacky in your body, but they are super supportive now. I have NO IDEA when or where I came into contact with this disease, (maybe from the tick that bit me, huh?)- but some say it can be spread from person to person and I am not sure what to believe on that. I am seeing an LLMD in June, the waiting list is that long, even though I had my Igenex test run already from my Holistic Dr. He was guessing I had Lyme Disease since I had so many aches and pains, and just weird symptoms that came and went. Most noticeable was arthritis and thyroid issues and depression that was horrible. I am a full time Court Administrator and have been for many years so it was important to me to continue working and being healthy (HAAAAAAAAAAAA)- thats just what I thought. I am healthy now that I know what I am dealing with, considering. But my Doc also told me bluntly, we have the answer to why you have been sick, but you have a long road ahead of you..........didn't know what that meant either until I started taking the meds. Lord have mercy, that Lyme Disease can bite at times! I went on a mission trip and had to get several vaccines, and that is what set mine off and I was so sick by the time I got home, it took three weeks just to get out of bed. Never doubt yourself, know that you are not making anything up and its not all in your head. My regular Doctor that I have gone to for twenty something years and several other specialists never even suspected Lyme Disease. A really good Holistic Medical Doctor is where I went and he has taken me from the doubts I had
brewing, to at least finding out what was wrong. Now, I am waiting for the appointment in June, in Louisiana. Hoping for the best for you. And, if your Doctor that your parents approve, maybe he will sign off on your test for Igenex in California or New York. I didn't know that regular Doctors would do that until I read what was on the board today! Please keep us updated Dylan, we want to know how you are doing!

 
Old 04-03-2013, 02:37 PM   #8
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Re: Could I have Lyme Disease? LLMD Necessary?

Oh, and Dylan, the stroke thing is VERY much a common symptom in Lyme Disease patients, as is headache and the tingling and numbness and the disorientation at times like you described! Sorry, I just wanted to make sure you knew that too............

 
Old 04-03-2013, 02:53 PM   #9
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Re: Could I have Lyme Disease? LLMD Necessary?

I was tested again for lyme about a month ago with the basic ELISA test and tested negative. I understand people sometimes get false negatives, But I appreciate you sharing your story, It was very informative and helpful towards going to see an LLMD.

 
Old 04-03-2013, 07:22 PM   #10
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Re: Could I have Lyme Disease? LLMD Necessary?

Dylan:
Again....you must get your blood taken from Igenix. But keep in mind that even if you test negative from Igenix, does not mean you don't have Lyme. Lots of people have a negative but a LLMD goes on your symptoms. My last Igenix was CDC negative and Igenix negative but I had four IND bands and two positive bands and my LLMD said that is a positive result in his opinion. Keep that in mind. lala

 
Old 04-06-2013, 08:11 AM   #11
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Re: Could I have Lyme Disease? LLMD Necessary?

Hii everyone, Just giving an update. Recently I followed up with my primary doctor and he's going to give me assistance in linking up with a neuro psychologist, as I have not completely given up on mainstream medicine and I have began my search for a near by LLMD. I found one out in Harvard, MA, but when I read the reviews for that doctor, I decided it wasn't a good idea to see her, I'm also trying to be more prompt with my 3 other specialists, GI doctor and Rheumatoid doctor and Neurologists. I'm going to review some more LLMD's and call them monday I found three that are somewhat close to me. As far as my overall health, it hasn't changed, I'm still constantly dizzy with a stiff neck. Still aching in joints, still having stomach issues.. Still getting rashes after showering. But I'll let you know more when it comes around. I'm looking for a doctor that's open minded, Not one who has there own opinion and sticks to it, also I would like one that is more determined to getting me better rather than blowing me off.

 
Old 04-06-2013, 09:17 AM   #12
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Re: Could I have Lyme Disease? LLMD Necessary?

Dylan:
I see a LLMD in Fairfield Ct. How far is that from you? His prices are extremely reasonable.
LaLa

 
Old 04-06-2013, 09:27 AM   #13
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Re: Could I have Lyme Disease? LLMD Necessary?

Its about 2 hours away from me. I found another one about 45 minutes from me in connecticut, But I don't know about prices and insurance coverage. I know most of them don't accept insurance. But I know detoxing your body and taking vitamins is a great thing. I'm sort of doing that on my own with Doxycycline Hyacate given to me by my dermatologist, its a multipurpose anti biotic for bacteria and is used in earlier stages of lyme and by taking 1 a day mens as a source of vitamins.

 
Old 04-10-2013, 10:23 AM   #14
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Angry Re: Could I have Lyme Disease? LLMD Necessary?

Soo I finally got in touch with an LLMD in Connecticut. I believe its $775 for the initial visit.. I'm not sure I can do that.. I wanna get better though. So hopefully I can seek help from my doctors. This stiff neck neuropathy dizziness things tho is getting old

 
Old 04-10-2013, 07:42 PM   #15
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Re: Could I have Lyme Disease? LLMD Necessary?

Dylan:
The LLMD that I go to in Fairfield/Bridgeport (I think on the border) is only $300. Seems like it is worth the drive. I drive from Long Island, NY because it is so much cheaper then anyone in NY. I have met several people on another board that I am on that go to him also.

 
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brain disorder, gastric problems, lyme disease, neurological symptoms, rheumatoid



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