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Printing This Thread for DR APT 2MORROW - PlS Comment!!

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Posted 9/15/2011 2:24 AM (GMT 0)

Hi Everyone -

For those of you that don't know -- I have yet to receive a Lyme diagnosis and I have been suffering with symptoms for quite some time now.  I have an appointment tomorrow with my Primary Care Physician (who is amazingly patient I might add).  I plan on printing out this thread to show her why I truly believe this could be Lyme (or not I am not a doctor) ...... I would like to provide you with my entire history / symptoms etc and please share with me your opinions on whether or not this sounds like it could be Lyme Disease.  Any help is greatly appreciated.  Please feel free to talk about the "neuro lyme" vs other types since I don't have the classic text book signs (rash, fevers, etc).  I will include everything that I think may be revelent.......

2002 - Road trip to Canada -- Got very sick with vomiting, fatigue, dizziness/lightheaded, slight fever

about 1 month after being sick I started to notice my vision was off.  I was noticing especially in the skies or plain backgrounds that I could see these tiny "sparkly" lines/dots swimming in and out of my vision.  I also notice small, short hairlike lines that were wavy and also zipped around in my vision.  In addition, I would notice that when I would wake up in the morning only my entire body would be very stiff and achy - I felt like I got hit by a bus or that I slept in the most awful position. Lastly, around this time I every night would wake up in the middle of the night with a completlely full bladder (could be completely unrelated)

2005 - Still having the same visual phenomena where I would see sparkly things swimming or zipping around in my vision. I didnt think anything of it until I started getting non stop headaches, these headaches would start in the afternoon time and would stay with me for days.  Once I had the headache (achiness over my left temple) for 3 days along with the visual stuff and what felt like sinking sensations in my head, it was a like a quick drop of blood flow or something. I reported this to my dr at the time.  She ordered a cat scan / mri / eeg. All normal except for the EEG -- Showed "seizure like acitivity" - Got a 2nd opinion and was told that although it showed some activity it was within normal limits and it was not a seizure disorder.

That doctor diagnosed me with migraines (mind you i had never had a full blown migraine) - He later referrded me to another dr who was interested in "oddball" cases ...... He ran a bunch of bloodwork.  The following came back slightly abnormal:

Elevated ANA

Elevated AntiPhospholipid IGM Antibody

Elevated Lymphs (Lymphocytes)

Elevated PT

Low Vitamin A and D

Decreased Factor VII

Also found to have -- High Prolactin levels due to Pituitary problem (pituitary adenoma), heart arrythmia (PVCs, Tachycardia, and SVT episodes).

Within 2 years I had a lot of the following symptoms:

-Visual Phenomena ----- "Sparkly" vision, sparks/dots/specks/lines that either flash or zip around in my vision, LOTS of floaters, this greyish sideways half moon above the center of my vision that appears and disappears, static vision at night, loss of vision, and more Im sure...

-Heart Palpitations

-Headaches / Migraines

-Vertigo Episodes

-constant Off - balance or tippy feelings

-Very easy bruising, especially in legs

-Left gland swollen in throat area

-joint pain that only comes and goes and stabbing in nature

-back pain

-stiffness of the back / shoulders

-muscle cramps / pain

-muscle twitches all over body and even on temples and forehead

-anxiety and panic attacks

-bouts of light and sound sensitivity

-blurry vision

-ringing in ears, tinnitus

-woozy / lightheaded feelings

-burning / stabbing sensations

-neck pain / neck sounds sandy when i move it around

-irregular period and milk production (but both due to pituitary problem)

-ovarian cyst

-irritable bowl

-queasy stomach / bouts of nausea

-heartburn and stomach pain

-constipation

-diarrhea

-low abdominal pain and cramps

-shortness of breath at times

-chest wall pains

Sorry for the long list but I will note - I was placed on Doxy for only 5 days in which I felt a bit of fatigue. I had a few sleep paralysis episodes while on the med and several after I stopped. I was told to stop by the way and not kidding but the first day off my stomach was a mess, severe diarrhea with nausea (especially worse in the am) and cramps/pains.  Other symptoms that I cant think of at the moment but I felt my stomach was a mess OH and my vertigo was nasty, got 10 times worse and its been 6 months and I still feel like Im on a boat......

Pls, for those of you with Lyme disease, any thoughts? I guess I could have been more organized but Im so exhausted and really slacking.  Oh and if you look back in one of my older posts you will find my Western Blot Results which is as follows:

66 KDA Reactive H (IGG) Interpretation IGG negative

23 KDA Reactive H, 41 KDA Reactive H (IGM) Interpretation IGM positive

So, 2 positive bands on the IGM and 1 positive band on the IGG. 

Now, even with my positive bands I have NEVER had ANY major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.)
or active arthritic manifestations (active synovitis)

Please any feedback here will help, it is for me to show my dr the thoughts/opinions of people that are actually understand what Im going through and are diagnosed with Lyme.....Anything from listing your symptoms, or to how long it took you to get a diagnosis, or how you too were brushed off ..... anything, just something :)

Posted 9/15/2011 2:29 AM (GMT 0)
OH and also --- Severe after images and trails (aka Palinopsia) and the pain in the shoulders and joint pain stuff didn't really start till after I stopped the Doxy, thanks again.

PS - I might as well add, it is possible that this is a somatization on my part bc I only started getting the pains AFTER the Doxy treatment and after a doc "thought" i had lyme...he stopped treatment bc he said i didnt have enough positive bands on western...My anxiety is through the roof and so I wouldn't be surprised if I caused my joint pain by constantly thinking I possibly had / have lyme
Posted 9/15/2011 2:45 AM (GMT 0)
Hi Neurogurl,

I guess I am just going to reiterate my opinion that you should go to see a Lyme Literate Doctor. You have enough symptoms -- you just need a clinical diagnosis from someone who knows Lyme.
Posted 9/15/2011 4:43 AM (GMT 0)
Hi Neurogurl,

I too had nearly all of the symptoms you describe.

Many of them presented AFTER I was on a low dose of Doxy for 5 weeks and was then told to stop taking it by doc (non-LLMD) who was convinced I did NOT have Lyme. My blood tests were 'indeterminate' which he considered a negative.

I think the short, low dose round of Doxy only stirred the Lyme up into a full blown infection, complete with debilitating, dire symptoms.

I am better now....but only because I went to an LLMD. This is something I wish I had done immediately. But I didn't know any better at the time.

So it is my opinion also that you should see an LLMD......ASAP!!! :)
Posted 9/15/2011 12:51 PM (GMT 0)
I believe band 23 is a lyme specific band. Your symptoms are all too familiar with many of us with lyme. A LLMD may make all the difference in the world and give you your life back. If you have lyme, you will only get worse. You deserve better.
Posted 9/15/2011 2:56 PM (GMT 0)
Hi AchievingGrace-

Thank you, I am working on it -- LLMD seem to be the only group of specialists that will not accept my insurance. Working on saving the money.

Can I ask .... Without ALL of the following would you still suspect Lyme?

- MAJOR neurological involvement (meningitis, encephalopothy, etc)
- Fevers
- Rashes
-Arthritis

I only ask because it seems really anyone in this world can post their strange symptoms on the Lyme forum and be told that it sounds like they have Lyme ---- Everyone gets aches, pains, and other things and some get them constantly. I want to know what are the MAJOR signs / symptoms that would separate the normal, healthy people who just have stuff that happens sometimes (Ex. I know people without Lyme that have sound sensitivity from migraines etc). Any help is greatly appreciated.
Posted 9/15/2011 3:25 PM (GMT 0)
Oh Neurogurl,

We can't diagnose you -- we can't even see you! That's why we suggest that people go to a Lyme Literate Doctor. Lyme has so many symptoms and it effects everybody differently -- there is no definitive combination of symptoms. It would be a whole different story if their were!!

Most people who come to this forum suspect Lyme and they are just looking for confirmation. In the case of unclear test results, the best way to confirm a diagnosis is to get on antibiotics and see if you get some kind of response. In as much as that reaction could be feeling better or getting worse, it takes a Lyme Literate Doctor to figure it out. Most Primary Care Physicians are usually unwilling or unable to diagnose Lyme and end up sending you on a trail of stressful and invasive tests -- oh, expensive, too.

Your neurological symptoms combined with everything else is a real pointer to Lyme. But like I said, we can't diagnose you.

Good luck!
Posted 9/15/2011 3:45 PM (GMT 0)
That terminology: MAJOR vs minor symptoms is a deceptive dichotomy that's not generally supported by current research. Words like major/classic symptoms represent what were the medical communities first awkward steps towards understanding what was then an emerging new infection. There are plenty of symptoms that fall on the "minor" side of the chart that are more debilitating and more descriptive of Lyme disease than those considered major. If your doctor is using those two descriptors to organize your symptoms then that seems to suggest his knowledge is superficial and outdated. It's just too complicated to put neatly in boxes like that.

I just (like within the last few weeks) went through this whole process with my primary doctor. I had done dozens of hours of reading and research, condensed everything into a few pages that summarized my problems and demonstrated why I thought Lyme was the most likely scenario, only to have him tell me I didn't have the symptoms that he expected in a case of Lyme. He actually started to pull up the CDC website for me while I was in the office... I stopped him before he finished.

He expected me to have visibly swollen knees and bells palsy... because those were the two pictures shown on the CDC website if you clicked on the symptoms list. That was the precise moment when I realized that I already knew more than he did about the disease and he was not going to be able to spend the time to research it sufficiently to have a competent conversation about it.

Some of the symptoms you list like the vision stuff and muscle twitches all over are far from common. Many of the symptoms you listed are common in the general public, but not the sheer volume of symptoms happening concurrently. You have clearly had many of them investigated by specialists and ruled out typical causes.

So... you're left with dozens of inexplcable symptoms spanning most of the systems in your body. You seem to think you had exposure in an endemic area. You had some sort of change in symptoms from a short course of antibiotics. You have a fingerprint band positive on your western blot; the only thing in the world that can cause this band (23) to appear is exposure to lyme bacteria.

This absolutely warrants an investigation by an experienced professional. No one here is telling you have Lyme disease. We're simply suggesting that it's a good fit for the story you've laid out and you should seek the advice of someone who has treated many cases of late-stage Lyme instead of relying on the advice of someone who has diagnosed and treated zero cases (your primary).
Posted 9/15/2011 4:30 PM (GMT 0)
Here's some info I tracked down for you - although if your GP won't at least allow you to be on the proper dose of abx (400 mgs of Doxy daily as per Dr. Joseph Burracano's paper "Advanced Topics In Lyme Disease" which can be found and downloaded from the internet), you absolutely need to see someone who is qualified to diagnose you based on your symptoms. YES! you do have enough symptoms to be taken seriously and be seen by a Lyme Specialist. It may be an investment to see a LLMD, but it's an investment in your health that you will reap the benefits from for the rest of your life. Take it from someone who has had these dreaded infections for several decades.

From Igenex (igenex.com/Website/);
The IgG Western Blot is an immunoassay and qualitative test in which antibodies are visualized. The IgG antibody is typically present a few months following initial infection. It is a qualitative test and is generally more sensitive and specific than the ELISA. This test must be used if the Lyme IgG/IgM antibody serology or Lyme IgG/IgA/IgM IFA is equivocal or positive. The somewhat specific Lyme antibodies of importance are against the following molecular weights of the B. burgdorferi antigens: 23-25 kDa (Osp C); 31 kDa (Osp A); 34 kDa (Osp B); 39 kDa; 41 kDa (common of flagella-bearing organisms); and 83-93 kDa. The term “kDa” refers to kilodalton for molecular weight designations. The term “Osp” refers to Outer Surface Protein of the bacteria.
-----------------------------------------------------
From Melissa Kaplan's site - www.anapsid.org/lyme/wb.html
Bands 23 - 25 either in IgG or IgM - indicates the Osp C (outer surface protein 'C') and is specific for Bb.

Band 41 is specific for spirochetes

Band 66 is p66 Oms66 (Outer membrane-spanning) Hsp outer/integral membrane protein
---------------------------------------------------------

And the CDC even says:
"Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods. "
Posted 9/15/2011 11:58 PM (GMT 0)
Thanks this is very helpful and I really appreciate everyones thoughts ...... I have no physical findings first off and also I found that if I were to follow Dr. Joseph Burracano's document it does say that in order to be diagnosed with chronic lyme (which in my case it would be chronic bc of how long I have had symptoms) the following 3 things must be met:
1. Illness present for at least one year (this is approximately when immune breakdown attains clinically
significant levels).
2. Have persistent major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.)
or active arthritic manifestations (active synovitis).
3. Still have active infection with B. burgdorferi (Bb), regardless of prior antibiotic therapy (if any).
Oh and ps trust me i completely understand that I cannot be diagnosed here and that i must see an LLMD but pls understand that for ppl that are not yet diagnosed and suffering symptoms, its very scary...and its even more scary when u go to the doctors and they cant help you, so its only natural to turn to the ppl who know first hand and thats the ones with the actual disease/illness. So, if someone can tell me as I had mentioned earlier .... without any MAJOR neurologic involvement I cannot be diagnosed correct?
Posted 9/16/2011 7:50 AM (GMT 0)
I guess I got confused by your referring to "major" neurological symptoms. As I see it, you have those symptoms. The terms encephalitis and meningitis just refer to the swelling of the membranes around the brain and spinal cord. It is the swelling that is causing some of your symptoms (neck cracking, migraines, off-balance feelings etc).

The fevers, rashes and arthritis are not present in all cases and may be so temporary in nature that you don't even notice them. An article I was reading lately suggests that the these very variations of symptom presentation in different patients might be an indication of different strains of the Borellia bacteria.

As I understand it, fevers and rashes present in the initial stage of the disease. And the presentation of symptoms can be further complicated by co-infections. Treatment can also bring out symptoms; while you are having lots of Central Nervous System symptoms at the moment, after a time on antibiotics the arthritis may start up. That's what happened to me.

Your symptoms sound very familiar to me. I do hope that you won't let this go untreated.
Posted 9/16/2011 2:43 PM (GMT 0)
Thank you -- I do plan on seeing an LLMD, I need to figure this out. I guess again my main question here is that the document by Dr Joseph Burracano is saying that you must have meningitis / encephalophty (aka swelling in the brain) ...... Although I have symptoms that would suggest swelling I have had MRI scans / blood work and seen by a neurologist who has ruled those things out, I do not have swelling and therefore according to the doc I cannot be diagnosed with chronic Lyme, correct???
Posted 9/16/2011 4:04 PM (GMT 0)
so its possible after lets say 8 years of suffering there would be no clear, obvious signs of swelling/inflammation? Does this mean the Dr Dr Joseph Burracano is wrong? I only ask bc if I go see an LLMD doc and they tell me that they want to diagnose me with chronic Lyme (despite finding any inflammation / swelling) then I will assume they dont go by his guidelines?
Posted 9/16/2011 4:20 PM (GMT 0)
I think you are focusing on one small piece of a very complicated puzzle.
Posted 9/16/2011 4:53 PM (GMT 0)
How? It specifically states in the document that in order to diagnose someone with Chronic Lyme the 3 must be met ---- I have had numerous tests done and was never told that I had the MAJOR neurologic signs ............ The "New to Lyme Start Here" thread refers me to this document ... I have to teach myself about the illness since according to these forums only no regular doctors understand and ONLY LLMDs do (which mind you are the worst docs for follow up, never returns my calls, they dont take insurance .... so much drama anyways) ......So, if I refer to that doc it specifically says I cannot be diagnosed without the 3 criteria ...... I dont have MAJOR involvement which would therefore rule out chronic Lyme.... Unless it is that it hasn't happened yet, maybe it takes a while before it shows up?
Posted 9/16/2011 7:30 PM (GMT 0)
I think you'll find most people are never specifically told they have meningitis/ encephalopothy, even in clear-cut cases of late stage lyme. You would probably not get either diagnosis without a lumbar puncture, SPECT scan or other testing you haven't had done, but you report all the typical symptoms of both. In other diseases, these conditions are much more acute, resulting in hospitalizations and possibly death in short order if they are not diagnosed and corrected. In Lyme its a much slower, more subtle process.

Read past page 3 of that document and you'll find other sets of diagnostic criteria that make no mention of "MAJOR" anything. The chart on page 11 demonstrates a much more detailed process of combining clinical data with labwork to come to a Lyme diagnosis.

Any positive labwork, combined with your stated clinical picture, would constitute a "highly likely" diagnosis. In order to satisfy the labwork portion of this chart you could attempt any of the other tests referenced, some of which would require you to go on an antibiotic trial, which would have the added diagnostic utility of possibly demonstrating a Herxheimer reaction (which is mentioned previously as highly diagnostic, but for some reason not assigned a diagnostic score on this chart).

You would also need a full coinfection workup, as several of the common infections can alter your serology, blunt your immune responses and substantially alter the presentation of the disease.

I understand you are trying to protect yourself by being thorough and skeptical, but you have quite a bit of work to do yet before you can start to rule out Lyme or co-infections. If you really want you could probably confirm either of the MAJOR neurological symptoms you reference, but I think its not a good use of time or resources. It's sounding more like a straw man at this point; don't get hung up on it.

Post Edited (Spall) : 9/16/2011 1:33:30 PM (GMT-6)

Posted 9/16/2011 8:27 PM (GMT 0)
If it helps in any way, I can tell you that I've had nearly all of the symptoms you discribe- irreg. period lactation, heart palps, headaches, weird vision, etc.  and normal brain scans.  But what you discribe is symptomatic of a neuro issue (just because it can't be seen on a scan doesn't mean it doesn't exist).  The symptoms are proof of a neuro problem. My head pressure would get so bad my nose would bleed- and nada on tests.  Two years after infection, I tested positive for lyme on Western Blot and Igenex.  And my symptoms are greatly improving with proper treatment.  The biggest mistake I made was not getting treatment sooner.  In my case I am one of the lucky ones who has definitive proof that I have lyme (very + tests).  You are smart to educate yourself, and not to assume that just being an "LLMD" is enough, but seeking the opinion of an LLMD may help you gain insight.  Or perhaps your PCP (like mine) will be willing to study the issue further (she then promptly referred me to a LLMD).  Good luck!
Posted 9/16/2011 9:32 PM (GMT 0)
Thanks again everyone -- Maybe there is a part of me that doesn't want it to be Lyme :( I guess for the doctors that have told me its all in my head -- You start to hope and pray it is just anxiety and that you are not suffering with an awful disease. Prior to any of these symptoms I lived a happy life - Symptom free, didn't even know what the term "Neurology" was to be honest, I never had to see a neurologist - Would never imagine ending up in a neuro's office. Well, I guess when I think of Chronic Lyme I think of hospitalizations, or severe symptoms (like JV when you give the nose bleed example -- I have vomited from headaches but never nosebleed ---- But I understand we are all different).

One other thing I wanted to point out and PLS PLS PLS don't take this the wrong way but as I read through different forums (had to visit quite a few to see where I fit in the most) I find that with other forums (some examples - MS, Lupus, ALS) I have come across threads where ppl post there symptoms and ask around and I have seen ppl with MS, ALS, LUPUS etc respond that "doesn't sound like MS" or "doesn't sound to be ALS". But, as I go through PAGES of Lyme threads I have not come across 1 post (and sorry if I missed them) that someone doesn't respond "That sounds like Lyme" - Why is this? I almost feel like anyone can post their symptoms on the Lymes boards and get the same response "Get checked, sounds like Lyme" ........ Why is this? I guess I'll probably be hearing that its because Lyme has a LONG list of symptoms ... But, you can't just say oh you have joint pain and blurred vision you have Lyme ... that may confuse people because joint pain / blurred vision is associated with lots of diseases and even benign conditions. It just seems that from all the different diseases out there (from my experience alone) Lyme forums are the only ones that are most convincing/pushy with regards to making you feel like you have Lyme. Gosh I hope this doesn't sound bad bc I must say that Lyme forum people are the most helpful and most willing to take the time to respond and inform and educate. So, I really just want to know where do you draw the line? I know this is not a board of doctors but it is a board of the REAL sufferers ... Those that actually have the disease and in my opinion, their opinions are more valuable than the doctors when it comes to this tricky disease.......

Sorry for my frustrations - I just want answers and I am scared of Lyme :/
Posted 9/16/2011 10:31 PM (GMT 0)
Maybe you have just misunderstood - I think most of us just say that it sounds like it could be .... or your symptoms indicate a possible Lyme infection.... along with need to see a LLMD who can diagnose you clinically if necessary?

We try to be very careful here not to convince someone that they do have Lyme - unless it's rather obvious to those of us that have all of those symptoms. This is not something most of us would even want our enemies to have! It is however at epidemic levels in this country and GP's are missing these infections more and more.

I think that by the time most people find us, they have gotten past the possibilities of their issues being MS, ALS, or any of the other 300 different diseases that Lyme and company can mimic. It's kind of like everyone that comes here has already been pre-screened in a way. Lyme Disease just isn't a word on everyone's lips yet.

We are all still saying that you need to be seen by a LLMD - we are not telling you that you definitely have the infection(s), but that you have more than enough symptoms that you need to be evaluated. Then once we get into what your symptoms could mean, we are saying that we believe it could be/would be caused by Lyme and/or other TBI's.

I may be way off base here, but that's what I've been seeing.
Posted 9/16/2011 11:28 PM (GMT 0)
Thanks Traveler --

First thing on Monday I intend on finding an LLMD that will respond to me, I don't care if I have to call out of work on Monday - I am dedicating the entire day to getting an apt scheduled.

I thank you for your patience and help --- Talk to you all soon!!!
Posted 9/17/2011 12:06 AM (GMT 0)
Good for you! Glad to hear that you made a decision on this! Have you gotten any referrals?
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