posted
Hello all, Im very happy to have found this community. I have just a few questions that I thought might be answered by some of the wonderful members here. Before I pose these questions, I will provide a very brief background of my illness, as it is pertinent to to my questions. First off, let me say that I have NOT been diagnosed with Lyme (however I have not yet seen a Lyme literate doc). I have had several basic lyme tests over the years (I believe Western Blot), and the results were "mostly negative". Im not an expert on lyme tests, however, from what I recall, the doctor told me that there were a few "bands" that might be indicative of possible lyme exposure, but overall, she interpreted the test as being negative for lyme. As a precaution, she put me on a month of oral antibiotics (I understand this is not sufficient for a chronic lyme infection)-this was about 4 years ago.
Now, the reason these lyme tests were performed, is that I have suffered from several chronic conditions for almost 9 years now. Im a 30 year old male, and one day, at age 21, I awoke feeling terrible. I will now BRIEFLY describe what my symptoms have been, because I do feel they are pertinent to the questions I will ask. So starting suddenly at age 21 (9 years ago), I found myself INCREDIBLY exhausted. I awoke feeling as though I had not slept at all. In addition, and actually more troubling, was that I was experiencing a very new sensation which I have seen described as "brain fog". My "brain fog" however, seems somewhat different from what I normally see it defined as. I do not suffer from memory loss, inability to concentrate, cognitive problems, etc. Instead, my "brain fog" is a sensation of almost feeling "drunk" or "stoned". In a very real way, I feel like I have altered conciousness or perception, similar to the effects that a drug or alcohol might produce. I feel almost in a "dream state". It is essentially these 2 symptoms (profound fatigue and brain fog) that I have suffered with, at varying degrees of intensity, for the past 9 years. I do NOT have any physical pain or fevers or any of the more "concrete" symptoms often associated with lyme-I just have fatigue and "brain fog" that has lasted for 9 years.
Now, I have no clue if these symptoms are due to lyme....but I have decided that I certainly want to have this possibility investigated by a lyme literate doctor.
So, now for my question.
1-I know no one can diagnose online like this, but does my story sound like lyme is likely to be the culprit? (bear in mind, I have had THOROUGH physical workups by docs in an attempt to diagnose me. To date, they have not found any disease or ailment that should account for my symptoms).
2-I have an appointment in a few weeks with a lyme literate doc (Dr. XXXXX in NJ). Unfortunately she does not accept any insurance (I have Oxford), and she (and her tests) are VERY expensive. I have an excellent primary care doctor who is very sympathetic to my chronic illness which she feels terrible about being unable to diagnose. My question is- is it possible/advisable for me to find out what sort of in depth lyme tests Dr. G would be likely to give me, and instead, ask my primary care doctor to give me these tests (hence my insurance would cover this). If this is not possible or advisable, I will of course proceed with Dr. G, but if there is a way I can have the same tests performed by my primary care, this would obviously save me alot of money
3-On a related note, and I am MOST interested in the answer to this question- What are the "gold standard" lyme tests that I should be given by Dr. G, or ask my primary care doctor to give me, if I go that route? Because my symtoms appear to me to be exclusively neurological (profound fatigue and intense brain fog), are there specific tests which might be better suited for my situation? I ask this, because I am speculating that because I lack symptoms like joint pain, and only experience neurological symptoms, its possible that if I do have lyme, it is confined to my brain/nervous system. If this is the case, are there more appropriate tests for me (perhaps ones that test cerebro-spinal fluid).
4-Lastly, if anyone here knows of any other good Lyme literate doctors in my area (I live in northern NJ, about 20 minutes from manhattan) I would greatly appreciate if you could either post their names/contact info here, or PM me this info. I would be especially interested in any of these docs that might accept insurance.
I sincerely apologize for my long post. It turned out longer then I wanted it to, but I just wanted to provide all pertinent information so that I might make it easier for the community here to provide answers. Im sure most of you have been in my position- Sick, fed-up, unable to get answers, and simply wanting their life back. My heart goes out to all of you. And I thank you in advance for you patience and your help. Be well-SH
***WEBMASTER NOTE: The doctor's last name has been removed.***
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sure sounds like it could be lyme (question one).
But the reason that you need to see the lyme literate doctor (think you said you have an appointment with one), is because there are no "gold standard" tests for lyme!
Because the blood tests are known to be unreliable (high proportion of false negatives), lyme is a clinical diagnosis, based on many different tests, examination, history of possible exposures, symptoms, etc.
Fatigue and brain fog are certainly, without a doubt, classic lyme symptoms. If you have lyme, you may also have co-infections such as babesia that also cause great fatigue and brain fog, sorry to say.
Yes, the lyme literate doctors can be expensive, but they hold the best possibility (and it is a good possibility) for effective treatment and a return to health, energy and a clear head.
Best wishes to you; the most important thing you can do right now is to read alot about lyme and its proper treatment. And keep asking questions.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Dear Selfhealer, sounds like it could be and I hope you find answers.
Please edit your post by clicking on the pencil and pad at the top of your post and edit your new LLMD's name out of the post- use initials only.
Unfortunately, with the split in the medical community and the persecution of aggressive lyme treatment, we need to protect the identity of our dear doctors.
I also have experienced the altered state that you discuss. I have no desire to be in an altered state, and yet, there I would be.
Luckily, this symptom has resolved with treatment and I hope it will for you as well.
Welcome to lymenet.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Thank you both very much for your responses. I went ahead and edited out the name of the lyme literate Dr. with whom I have an appointment.
Catskillmama-So you are familiar with the type of "brain fog" I described? I know that brain fog is a classic symptom of lyme, but usually when I see others discuss their brain fog, they focus on things like forgetfullness, inability to concentrate, etc. As I said, I do not suffer from anything like this. My "brain fog" truly feels like I am under the influence of a drug. In fact, it reminds me of what I would feel like (back in my college partying days) at the tail end of a marijuana experience. It is so unbelievably frustrating, when all I want is to feel clear headed, and yet there is this constant "fog" that simply will not lift. I would love to hear other people's experience with brain fog to see how common my "variety" of brain fog is.
I would also appreciate it if anyone could PM either the names of, or and index of, lyme literate doctors in my area (northen NJ or NYC). If anyone knows of one who accepts insurance, that would be IDEAL.
Again, thank you for the responses, and I'd love to hear from others who might have additional answers/opinions to things I asked and dicussed in the first post of this thread. Thanks-SH
Posts: 35 | From NJ | Registered: Aug 2009
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bettyg
Unregistered
posted
welcome
please do MORE editing as i noticed the drs. name thru out your post. you can show DR. G and STATE ONLY; nothing more ok.
click on pencil, 3rd box to right of your name and delete LAST NAME AND LEAVE INITIAL ONLY...
while there, please break up both posts into MANY, SHORT PARAGRAPHS and double space between each one line i'm doing here for us severely neuro lyme folks who can not read or comprehend what you have typed.
please use my guidelines below; huge thanks; hugs and kisses...
*****************************
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The fact that thorough physical workups have been unable to find a cause for your neurological symptoms makes me think that lyme may very well be the cuprit.
If it is lyme disease, all the normal tests that doctors do will come up normal. That was the case with me and is the case with many others.
The only tests that will come up abnormal are the Igenex lyme and coinfection tests that a lyme doctor will order.
Igenex does not take insurance, so these expensive tests will cost you the same whether your regular doctor orders them or your lyme doctor. It is best to have the lyme doctor order them so that everything is done right.
The blood must be drawn early in the week, sent express delivery, etc. If anything is done wrong, your money is wasted.
To read about this, go to the top of "Medical Questions" forum and read "Dr. C's Western Blot Explanation."
So, the lyme doc should order a lyme Western Blot and also tests for babesiosis and bartonella (lyme coinfections) at the first appt. (Cost will be over $600) If any of those tests are positive, you have lyme. But, even if they are negative, you can still have lyme unfortunately.
For some, a trial course of antibiotics is their only proof that they have lyme disease.
Here is a quote from the lyme disease guru of the U.S. and the world--Dr. Joseph Burrascano:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (p.4)
This fact makes me believe that your visit with a lyme doc will be money well spent.
To educate yourself on this disease, I suggest you read the Burrascano lyme treatment guidelines found here:
Burrascano does not recommend spinal taps as you will see on p. 8. A good lyme doc will not order such a test because they know it cannot rule out lyme disease.
You can read about the Igenex tests by going to their website Igenex.com
Keep asking questions. We will answer.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Good advice you got. While you are cogitating on what to do, you should try to remove alcohol and sugar from your diet. See if that has any effect on your fog. That is something lymies have to do anyway, and it won't hurt to do this on your own.
Posts: 8430 | From Not available | Registered: Oct 2000
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bettyg
Unregistered
posted
[QUOTE]Originally posted by bettyg: welcome
please do MORE editing as i noticed the drs. name thru out your post. you can show DR. G and STATE ONLY; nothing more ok.
click on pencil, 3rd box to right of your name and delete LAST NAME AND LEAVE INITIAL ONLY...
while there, please break up both posts into MANY, SHORT PARAGRAPHS and double space between each one line i'm doing here for us severely neuro lyme folks who can not read or comprehend what you have typed.
please use my guidelines below; huge thanks; hugs and kisses...
*****************************
SORRY, but you still have MORE editing to do on REMOVING DRS. LAST NAME.
again, while you are there, please double space between all paragraphs and make them SHORTER so they are readable .... big thanks from us NEURO LYME patients. hugs/kisses
IP: Logged |
MY GOD!! You have described MY experience exactly!!! WOW! You are the first person I've heard about with my experience.
Except I was 29 when it hit me. But it was exactly how you described. I felt drunk-like. Concentration was/is a chore. I described it to the Dr as being "spaced-out"
I'd sleep and wake up exhausted. I'd sleep some more but it did nothing.
To deal with these symptoms I'd take caffeine pills. They actually helped me somewhat.
One distinguishing symptom for me was that these were episodes. I'd have these problems for a few weeks, then they'd go away and I'd feel fine. But then come back. If I got run down, it would hit me again. Kind of like a cold sore.
I went to the Dr and after testing me for everything I was diagnosed as having "Chronic Fatigue Syndrome" (meaning, "yes you are fatigued all the time, I don't know why".
When I read about lyme years later, I thought it sounded like what I had. But the tests said negative (they were really bad back then).
I never found a tick on me, nor found a rash. But I do spend a lot of time in the woods of Western MA.
So I just lived with it. The symptoms lessened over time for me to the point that it wasn't really a big deal anymore. So unlike many here, I never got worse. I was lucky.
It was when I got reinfected a few times that my health went downhill. The last time I found the damn tick, got it tested, and went to a LLMD 6 months later as my health was going downhill fast.
Don't screw around. Find the money and get it taken care of. Life is tough enough without these symptoms.
My LLMD is in Manhattan and is in Under Our Skin. He is a founding member if ILADS. I can PM you his info. He does not take insurance, however.
Good luck, and welcome to the world of lyme.
James
Posts: 872 | From New York City | Registered: Jun 2008
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WildCondor
Unregistered
posted
Welcome!
Happy to help, just need to get something off my chest first.
TO those who cry about big boxes of text, enlarge your screen font or open a reader and break up the post yourself. Stop being lazy and making demands on others. Not every poster needs to space things out according to what you desire for YOU. To me, large blocks of broken up text are harder on the eyes, distracting, and a pain to scroll through to read the replies.
k rant off. lol
Let us know more about your story. How can we help? Do you have the Lyme guidelines?
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bettyg
Unregistered
posted
wild condor,
my you really got up on the wrong side of the bed these last 2 days!
your mood in many posts are NOT the person i once knew and admired.
it's like Jeckle and Hyde these last 2 days on your posts. going thru really rough times are you?
i will address this; i am NOT LAZY! the number of my posts prove this beyond any doubt.
my pc also has been down OFF and rarely on for 6 wks. now.
posted
Lyme folks sure can get cranky, as evidenced by above replies. I know I can.
Re: brain fog... mine is full blown dreams while awake, to the extent of being diagnosed with narcolepsy via sleep studies a year and a half ago.
Now some research shows a narcolepsy type syndrome, complete with inappropriate sleepiness and sleep cycles, may be a neurological manifestation of long term lyme. I was diagnosed in 2000, treated 2 weeks.
Nine years later, "seronegative rheumatoid arthritis" "anemia" "Narcolepsy" and a variety of other oddities.
Best of luck!
-------------------- Kirsten, NH
+Lyme 2000, 10 days abx RA, sero- 2002 Heart murmur 2006 Narcolepsy 2008 current: LLMD since 8/09 Posts: 11 | From NH | Registered: Aug 2009
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posted
I have oxford insurance too in network coverage only so no coverage for my LLMD. What I found for tests is that the coverage they do seems to be based on the lab it is done at and the test that is done. If I got a test done by a lab on their covered list then it didn't matter who ordered the tests for me.
They are known for being one of the better though not best labs for these tests. If you do a lyme test from them make sure the order says to show all bands and not just the CDC ones. They won't test all bands without the request on the order.
Posts: 526 | From NJ | Registered: May 2007
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