First let me say I have found this forum to be very informative, It's time for me to stop lurking and post. Excuse the length this is my first time posting about what I am going through so it is wordy.
Let me explain the situation. I am a 23y/o male and my journey started in August when I woke up with extremely decreased vision in my right eye. I quickly visited the ophthalmologist and got a diagnosis of Optic Neuritis.
When I got home I googled the condition and nearly died when I started to read about it's connection to MS. Then a week later I started to experience burning in my calf muscles and left arm, this continued for a few days and migrated into a pain in the back creases of my legs (behind the knee) and arm. The pain then turned into a horrible arthritic pain in my knees when walking and going down stairs.
I found that some days were better than others and when I was feeling particularly crappy I was running a low grade fever (5 times in the one week I was keeping track). The symptoms improved slowly after this, to the point of the only problem being the optic neuritis, but almost a month later I had another flare of burning and the eye condition seemed to get worse although not as bad as it was when it first occurred. I also remembered feeling pretty ill and lacking energy almost a month before the eye problem, and having a period of depression and no energy before that. The fevers and the monthly flare started to make me think there might be an infection going on in my body. And in my research I found a symptom sheet for lyme and to my surprise a lot of the stuff I had been experiencing prior to these neurological symptoms were on the list. I think I checked off about 75% of the symptoms. A lot of which I just thought were normal or due to depression.
Unfortunately I can not visit a Dr. to diagnose any of this until October, thats the soonest I can get insurance since I am self employed. I did have an emergency visit due to being light headed and off balance and they performed a CT to rule out tumors and aneurism, and I got a gigantic bill. The doctor at the ER said he was going to run a lyme test but somehow it got "lost in translation at the lab" and was never done. I did pay out of pocket to visit a neurologist for a consultation prior to the insurance kicking in and he seemed to discount lyme the second I mentioned it
Symptoms I had prior to the ones that got my attention, that I have had for at least the last three years are: Periods of zero energy, often feeling depressed and then fine the next day. Irritability out of the blue for no good reason. Almost constant sore throat, at all times of the year. Hoarseness, clearing throat all the time. Losing voice after talking for a while. Constipation. Rapid onset of floaters (visited the eye doc. about it because I got so many so quickly about 3 years ago, some big black ones too that never go away). These are just a few.
My newest symptoms are mild chest discomfort that turns to pain when pressing on my chest, from reading others posts here I suspect it is chostochondritis. Optic neuritis, everything in my right eye seems washed out and blurry and my vision varies from day to day. The peripheral neuropathy the burning legs and arms which comes and goes and the arthritic pain when walking which comes and goes. I actually noticed this arthritic knee problem 6 months ago but it would come last a few hours or a day, and disappear.
Thanks for bearing with me through all that! Now to the questions.
Does this sound like it could possibly be Lyme? It sure does to me but I am biased being that the other possibility could be MS.
How can I get these doctors to take me seriously, they all seem to HATE patients that do any sort of research and it REALLY pisses me off! The ER doc told me to stop looking at webmd and trying to diagnose myself.... when all I did was mention I had a lot of symptoms that were on the lyme checklist and kindly asked him if he could include a lyme test on the bloodwork....
Can anyone recommend a good LLMD in new hampshire?
Thanks in advance, I know none of you are doctors but I am terrified and going out of my mind. I was in the middle of planning a wedding with my fiance, starting a business, etc, and this has completely put my life on hold. And the doctors seeming to want to say it is MS without even listening or being able to do any testing yet is also scaring me.....
-Bob
EDIT: Forgot to mention I lived in a heavily tick infested area up untill a year ago. I have probably removed 15 ticks from myself in the last 4 years.
Posts: 67 | From New Hampshire | Registered: Sep 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
1- insurance will not pay for pre-existing conditions so don't leave a paper trail
2- go to www.canlyme.com click on the symptom list-print it and take it to a walk in clinic and , BTW, perhaps you remember an attached tick and possibly a bull's eye rash. Pay cash so no paper trail. Get doxycycline, ILADS (www.ilads.com) recommends 200 mg twice a day.
3- check support groups at the left for one in your state-contact them for doctor info-you need to be checked by a LLMD (Lyme literate MD)
4-stop wasting your time and energy on doctors who are poorly informed about TBD (tick borne disease)
5-come on back and post as much info as you want, it helps us to answer your questions.
6- there was a poster from NH-I'm trying to remember his name-he knew a LLMD in NH
7-the screening test for Lyme is junk-best test is from Igenex www.igenex.com Test # 188 & 189-western Blot
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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quote:Originally posted by janet thomas: 1- insurance will not pay for pre-existing conditions so don't leave a paper trail
Janet...I'm a bit confused by this. Please explain.
Bob, it certainly could be Lyme. I agree with Janet that you need to begin your search for a dr who treats Lyme disease. All others are virtually useless.
Have you tried posting in Seeking a Doctor for one? Be sure to post for NH so others will see it.
You may have to travel to NY to see a dr. I'm not sure.
It's just as well they didn't run a Lyme test at the hospital. It wouldn't have been a Western Blot anyway. And it wouldn't have been sent to a good lab for Lyme testing.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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What Janet meant by that statement, is that if you are already sick prior to getting insurance, and the new insurance company finds out or knows about it, they will not cover it.
For example - at one point in my life I was told I needed a root canal by the dentist but I did not have insurance at the time.
Since it was a pre-existing condition that the dentist documented, it would not be covered even when I got insurance if they found out about it through my dentist.
I am not exactly sure how the new insurance companies can access the info, but you have to be very careful - I guess like Janet said, don't leave a paper trail - such as paying for visits/tests with checks or credit so there is no evidence of it prior to getting insurance.
I don't know exactly how it works but I know what she means by it.
Hope this helps a little. Maybe someone else can explain it a little better.
Posts: 70 | From Quakertown, PA | Registered: Sep 2005
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So far the only thing on paper is the optic neuritis. Which is what the eye doc checked out and the neuro put as the reason of my visit.
If insurance can deny you for symptoms, what stops them if you start talking to the doctor about lyme symptoms you might have had for years....
For example If I say, hey doc I had X symptom checked out years ago, then come to find out that was a symptom of lyme meaning I have had it for years, the insurance company will deny the claim??? I have been pretty cautious about not seeking treatment till I am covered but is this all in vain then? I really can not afford to get a diagnosis and have it not be covered... and this really has me worried. Does this mean I cant tell my doctor these symptoms happened in August? Will they report those details to the Ins. and get me denied?
Sorry I am really new to this, I have not had my own insurance before and have been uninsured since I graduated (kicked off family plan).
More stuff to worry about I guess
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Bob It would be good for you to make a list of your symptoms-- be as complete as you can be- do symptoms come and go -severity - include dates ect. Include any meds you have taken and results if any-
Take list to Doc
Lyme is DX by symptoms- Tests are very poor
Do not use test results to rule out disease only to conferm--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
Bob,
Pre-existing conditions are like pregnancy. If you get a new job in the middle of a pregnancy the new insurance will not cover the cost--it is a pre-existing condition.
I've had lyme since I was probably three or four--so don't worry about when you got it--it is when you are diagnosed. Weird, but true. Just pay cash when you talk to any docs--find a good llmd--he probably doesn't take insurance anyway.
I would hope you can find a good doc in your area--it does sound like Lyme. It is good you are finding it so early before you have kids you can give it to.
linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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posted
Hi - I a new too but it didn't take me long to realize that a regular doctor will not treat me. I have to go to an LLMD and I suggest you find one too. I went to 2 doctors and they both poo-pooed all the stuff I had printed out from lymenet and other sources. My dog and my neighbor had lyme for heaven's sake! Yet they are stumped by my classic lyme symptoms. Anyway, I have a very large deductible with my insurance so all these tests and 2nd opinions are out of my pocket and it was money wasted. If I had listend to the pple on lymenet, I would have went straight to an LLMD. I have an appt with one now and it is coming soon. Yay!
Posts: 351 | From La Crosse, WI | Registered: Sep 2005
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lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
Welcome Bob.
Your symptoms could be Lyme, but there are other infections (coinfections) you could have picked up (Babesia, Erlichiosis, Bartonella, Mycoplasma...)..
And your symptom list sounds very familiar - very Bartonella like. The eye stuff, the mean moodiness, the afternoon fevers. Have you found any red mystery bumps (particularly near your neck or chest?)
The tests for coinfections are even less reliable than Lyme tests, and you need to see an experienced LLMD for proper diagnosis. A doctor that is not Lyme Literate (LLMD) will be a waste of time and $$.
If it is bartonella, many of the antibiotics traditionally given for Lyme will not address it. Rifampin seems to be the most successful.
Good luck to you.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I don't know...
It just sounds like you REALLY don't want to get married!!!!
Sorry...all the advice you've been given is sound...I just thought I would lighten you up a little.......... zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Spend the money you don't think you have on an LLMD.
Beleive me this is the best advice.
There are also other specialty labs MDL labs and bowen. I preffer MDL LABS because they take insurance. Igenex is the top lab and I have used them.
I like janets advice,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Will insurance pay for Igenex? How much do the labs cost for Lyme/Co-Infections. Do they accept credit cards?
How does the LLMD thing work, if they dont accept insurance, does that mean I have to pay out of pocket for everything, meds and all? Money for me is really tight right now, my fiance is basically paying all the bills herself, and I am 23 so my savings were not large and are gone now.
I really appreciate all the helpful comments, I am trying to locate an LLMD in my area, but not much luck yet.
Thanks for all the help, -Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
Thanks, crazy...don't know where my brain was!!
bob....most ins companies will reimburse you if your LLMD does not accept ins. You have to file it on your own...though sometimes the LLMD will file it after you pay upfront.
My ins paid for Igenex and they also pay 80% of my LLMD's charges.
posted
Heather: Yes I did post in Seeking a Doctor. I also did a search and private messaged those who had responded to others in my area. I did get a few responses but it seems the closest so far is Dr. D in boston and Dr. R in lebanon NH. Boston is closer to me, I will also see if there is anyone in Maine.
Lymetoo: Thanks for the clarification, -Huge- weight off my shoulders, I can handle insurance re-imbursement. I read more on the Igenex site and they do accept Credit cards for payment. Which means I can bounce the costs around on the card while waiting for reimbursement, which is a huge plus. Other than the obvious lyme tests that were reccomended, which of the co-infection ones are the good tests? Or should I get the entire "panels".
-Bob
Posts: 67 | From New Hampshire | Registered: Sep 2005
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posted
Bob..call your insurance company just to make sure.
You said, "Other than the obvious lyme tests that were reccomended, which of the co-infection ones are the good tests? Or should I get the entire "panels"."
hmmm....I would get Lyme and babesia for sure. The Babesia WA-1 is for the West Coast....can't remember the one for the East Coast. Someone here will know.
If you need to watch the cash flow, I'd skip the PCR....but get IgG and IgM for Lyme. You may also want to get bartonella testing. If you'd like to save money there, then do some research and see if you have those symtpoms.
At any rate....keep in mind that all tests are flawed and you could have Lyme and/or babesia even if the test says negative.
My LLMD TREATS for ALL co-infections no matter what the test says. If you don't clear the babesia, you can't beat the Lyme.
MANY folks find out much too late that all along they had babesia and it wasn't addressed. Sad stories.
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