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» LymeNet Flash » Questions and Discussion » Medical Questions » Lyme? MS? Something else?

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Author Topic: Lyme? MS? Something else?
silentkid
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Hello all. Do you like a good mystery novel? Feel free to tell me what you think is up. Any input is greatly appreciated.

On Wednesday, September 25th, 2013, (my 43rd birthday), I was in the shower getting ready to go out to dinner, when suddenly my right pinky and ring finger, and the side of my right hand became numb/started tingling.

I had been doing repetitive work with that hand at a construction site in the weeks leading up to this, that i figured the symptoms were related.

I started looking online and found info about Cubital Tunnel Syndrome (like Carpal Tunnel, only affecting a different part of the hand).

The numbness persisted for days and through the weekend, and so that following Monday, the 30th, i went to my Chiropractor to get an adjustment and ask his advice. He did the usual workover (i've been going to see him for 34 years).

The hand didn't get better, so i went back to see him on Wednesday, October 2nd. This time, he used some sort of traction device which i laid my neck on and which put upward pressure onto my cervical/thoracic spine - a treatment he had never done on me before. He also gave me a more rigorous adjustment to attempt to resolve the hand symptoms.

The following Friday, the 4th of October, i started to notice a new symptom - when i tilted my head i felt a little dizzy, and when i looked into the extreme right of my peripheral vision, images were doubled.

This double vision began to get worse over the next few days, so on Tuesday, the 8th of October, i went to see my GP. She decided that i was probably having some sort of spell of vertigo, and that it would go away.

I should mention that i have never had any symptoms remotely close to any of this before my birthday - so it was all becoming a little unnerving.

Now, here's where this all starts to sound like an episode of 'House M.D.' - during all of this, i had this 'cyst' thing on the back of my ear - earlier in September i had something bothering me on the back of my ear that my wife told me was 'just a blackhead' and to 'leave it alone'.

I am not one to leave anything alone, and so i incessantly picked at it - it eventually got infected - and around the same time i got the hand symptoms,

the infection had healed over and became what looked like a sebaceous cyst, or at least that is what the Doctor thought it might be - it was the size of a chickpea on the bottom back of my ear.

The doctor set up an appointment for me to go see a neurologist about the hand, and sent me on my way.

Oh, also - possibly unrelated, but i want to be sure i dot all of my 'I's here - my 18 month old son got his Varicella vaccine on Thursday, October 3rd, the day before the vision symptoms started.

Moving along - by Friday, October 11th, my vision had gotten so bad that i could barely drive - anything beyond six feet in front of me was doubled unless I closed one eye.

I was working on my computer that morning, and, as i often do, i happened to be sitting on my chair with one foot under my ass -

and when i got up, i realized my foot had fallen asleep - but the numbness wasnt subsiding, and through the day it got worse.

The next morning i started to feel numbness in my groin and ass - and by Sunday i began to get numbness from the waste down. Naturally i started to panic, and had my wife drive me to the emergency room.

At the emergency room my bloodwork was taken and the doctor told me that he 'cant put my symptoms together' and that i should keep my neuro appointment for that Tuesday and try to get an MRI done, which i did. The standard ER bloodwork was all normal.

The brain MRI i had done that week came back with multiple bilateral white matter signal abnormalities -

one 'superior to the right temporal horn', two 'adjacent to the posterior aspect of the lateral ventricle, appearing to radiate toward the ventricle',

one small one seen 'within the left side of the corpus collosum' and one 'within the left septal collosal interface'.

Additional signal abnormalities were seen 'within the left centrum semiovale'. Additionally, the MRI showed significant 'bilateral ethmoid opacification' in my sinus cavity.

Now i started getting scared - and googling was pointing to many things, MS being the scary one - but also Lyme disease, Gullain Barre, and a host of other infectious conditions. I went to an eye doctor who diagnosed my double vision as '6th cranial nerve palsy'.

My condition continued to worsen quickly, by the end of the weekend of the 23rd i was totally numb from the waist down, my vision was so bad i had to wear an eyepatch at all times - i was dizzy, depressed, exhausted and anxiety ridden.

I woke up every morning with this 'poisoned' feeling and a soft pulsating in my head.

It was at this point I started thinking that the thing on my ear maybe had been a tick - and that this might be Lyme.

I could not get my GP or a dermatologist to biopsy the cyst, which i started to think now was maybe a tick that had gone subcutaneous...

when i put a flashlight up to my ear, in the mirror i could see a small. sesame seed sized black mass inside of the ear.

My neuro and GP, after looking at the MRI, were thinking MS - so i was sent for a follow up Brain with contrast and C-Spine with and without contrast.

Brain with contrast, done 2 weeks after the first MRI, showed no changes from the prior one.

The C-spine had no lesions, but did show a slight herniation at C5-C6 (my Chiro said that could explain the hand issues).

During this time i also tried to get my GP to put me on Antibiotics, in the event that this might be Lyme or some infection, but she refused to 'blindly prescribe antibiotics'.

This response frustrated me because so many times in the past, GPs have tried to put me on Antibiotics for the common cold, and often prescribe teenagers Abx for acne - but she wouldnt hook me up for possible Lyme - so maddening.

The neuro wanted me to go on steroids - but i insisted that i wanted to find out if this was Lyme before i did that, because steroids could be a bad idea if i indeed was fighting an infection.

Instead i started a near paleo anti-inflammatory diet regimen, and started taking Turmeric/Curcumin, Vitamin D, B12, a Multi, Fish Oil, a Probiotic, Cell Food, and special Garlic capsules.

I finally was able to get an appt. with an infectious disease doctor on October 29th - a full month into the nightmare.

She had me get blood tests done at Quest and then put me right on Doxycycline in the event this was infectious.

That bloodwork came back with a slightly elevated ANA screen (complements were later negative), EBV IgG positive (IgM negative), and 'Q-Fever' screen came back positive (confirmatory PCR was later negative - after being on Abx for 10 days, though).

All of the other tests were negative (there were tons - 39 in all), including the Lyme Elisa and Western Blot bands and many tick coinfection screens.

Meanwhile, 7 days into the antibiotics and my symptoms were, albeit slowly, halting, and then actually getting better. Fast forward to early December - and my lumbar puncture. They did an MS profile, Syphilis(negative), West Nile(negative)

and were supposed to do a Lyme PCR, but it didnt get done - the Dr said he requested it, but the hospital said that he didn't. Another majorly frustrating moment in this saga.

The MS profile came back with:
IgG, Quant, CSF: 9.8 (High), normal IgG, Quant, Serum, normal Albumin CSF and Serum, IgG/Alb Ratio, CSF .41 (High), CSF IgG Index 2.1 (High),

IgG Synth Rate, CSF 35.4 (High), Myelin Basic Protein, CSF 1.5 (High), and 10 Oligoclonal bands in the CSF not found in the Serum.

Now i was depressed. How much my life changed in the matter of a week or so in the Fall... i was relatively healthy and problem free before this all happened.

And now my Neuro was definitely leaning toward an MS diagnosis - saying that the only criteria left for a postive diagnosis would be a second attack down the road, with some changes in the white matter lesions at that time.


I am married 5 years and have a 2 year old, and before all this i was thinking about buying a house, and now i am worried about keeping my job... so freaking crazy.

Meanwhile, i was on the Doxy for about 6 weeks, and the symptoms had been improving - by January the vision was getting better,

i could drive without my corrective glasses most of the time, the numbness had retreated to just my feet and toes, and slightly in my abdomen on occasion (a slight 'tightness' at times).

I still was waking up with that sick/poisoned feeling, though, and i was completely exhausted all day, every day. I definitely wasnt out of the woods yet.

Now, i finally got an appointment on January 28th with an LLMD. My bloodwork was sent to IgeneX for their Western Blot Assay as well as C. Pneumoniae IgG/IgM.

At the same time i started taking LDN, which, within a week at only 1.5mg, has done wonders for my fatigue, mood, and general 'poisoned' feeling - all have subsided 80-90% now 2 weeks in, and i am planning on going to 2mg this week.

Finally, the IgeneX results came back this past Friday:

18 kDa IgM (-) IgG (-)
23-25 kDa IgM (-) IgG (IND)
28 kDa IgM (-) IgG (-)
30 kDa IgM (-) IgG (-)
31 kDa IgM (+) IgG (+++)
34 kDa IgM (-) IgG (-)
39 kDa IgM (IND) IgG (IND)
41 kDa IgM (+) IgG (++)
45 kDa IgM (-) IgG (-)
58 kDa IgM (-) IgG (+)
66 kDa IgM (-) IgG (-)
83-93 kDa IgM (++) IgG (-)

Isnt this totally freaking insane that after all those negative test results, and months of misery, i now have a lab telling me that there is a detection of Lyme in my system? Is this what was causing my troubles, and its not MS at all?

I know this is positive according to IgeneX criteria, but is it VERY specific to Bb? Or could it be something else? It seems it is close to CDC positive if the IND bands are included, no?


So - sorry for the long winded introduction - would love to hear any input, thanks for reading.

Thanks again

Oh - a couple of things i forgot to mention -

I did not have any weakness in any muscles - i had full strength in mobility and coordination.
I did not have Lhermitte's sign or the Babinski sign.
My optic nerves were checked and were perfect.

Not sure if any of that matters.

P

...............................................

Hi and welcome to Lymenet - I've broken up your post for easier reading for many here. Please do likewise from now on so folks here can read your story more easily - thanks - Robin

[ 02-19-2014, 03:29 AM: Message edited by: Robin123 ]

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Keebler
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Even ONE positive band on either IgM or IgG can indicate lyme. Lyme cannot be diagnosed by a test (but do see the Western Blot detail in the "Diagnosing" link). It's CLINICAL diagnosis.

CDC test criteria is ridiculous, and a political-insurance set-up (or let-down), not based in the reality of lyme at all.


http://www.anapsid.org/lyme/lymeseroneg.html

Reasons for False Negative (Seronegative) Test Results in Lyme Disease


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=015508;p=0

Diagnosing Lyme Disease (&/or whatever else is going on)

Other tick-borne infections and other chronic stealth infections - as well as certain conditions that can hold us back - are discussed here.
-

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Keebler
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How just doxycycline (or other antibiotics, alone) can cause chronic lyme:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme


You mention now having a LLMD. Good. More detail about what that term means, to be sure your doctor is a LLMD:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=013239;p=0

What is a LLMD? LL ND? What is ILADS?

WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.

Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences
-

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117839;p=0

Topic: Could (misdiagnosed) MS be Lyme?

Many links here about the Lyme-MS connection -

Also detail about other tick-borne infections, other stealth infections (such as Cpn) that can cause "MS" as well as environmental causes & complexities.
-

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Keebler
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". . . 'Q-Fever' screen came back positive (confirmatory PCR was later negative - after being on Abx for 10 days, though). . . . "

" . . . EBV, positive . . . " (end quotes)


I would have your LLMD consider that Q-Fever first result. PCR may or may not be accurate. If it was detected in the first screen, that sure says something to me.

Glad you rejected steroids, knew to do so (as they can make lyme / other stealth infections MUCH worse) . . . and you also started on key supplements yourself. Good move.

I have to stop now but wanted to assure you that (sadly) your ordeal is not all that out of the ordinary for most with lyme, other stealth infections.

Q-fever & EBV were just two things my eyes sorted out from your post but I'm sure you have other specific details so don't let anything get swept under the rug.

Most Infectious Disease doctors do NOT believe in "stealth" (sneaky, persistent) infections.

Most do not believe in extended or combination antibiotics.

Most are simply uneducated and don't even know it. Now, that would seem like a blanket indictment but I've seen it in person and have read so many accounts such as yours.

I hope you are confident in your doctor and that they are a true ILADS educated LLMD who can address all your concerns.

Others will be along to add their thoughts. Good luck.
-

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Keebler
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You said a lot of your symptoms started the day after your child's vaccine. Do tell your LLMD about that. It may be relevant.


Some have done well with the LDN. Glad to see it's helping.

As you are so proactive about this, I'm taking that as a good sign you will see improvements and have every right to hold out hope.
-

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silentkid
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Keebler, thank you so much for your quick and comprehensive responses... i have some reading to do.

I forgot to mention that my IgeneX came back borderline positive (EQUIVOCAL) for C. Pneumoniae Igm and IgG... and also back in November the bloodwork came back IgG positive for Mycoplasma Pneumoniae (but IgM negative).

You mention that the EBV might be significant, but that also was only IgG positive, the IgM was negative.

The Q Fever screen was IgM positive, with the Phase II IgM titer coming up borderline high (1:16).

I have read some stuff that indicates the Q Fever screen and Phase II titer is often cross-reactive with other infections, though... its very hard to find much about Q. Fever (coxiella burnettii) in this context. I think it is pretty rare. The LLMD i am seeing is Dr. S. in Howell, NJ.

Thanks again for your help...

P

[ 02-19-2014, 03:31 AM: Message edited by: Robin123 ]

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Keebler
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silentkid,

I didn't want to say anything for your first post but if you are going to post more, and want people to be able to read what you write, finished paragraphs of 3 - 4 lines are best. More than about four lines and many eyes can go spinning, so to speak. That's about 5-6 lines in the composition / edit format, it seems on my computer, at least.

Many here have nystagmus or other vision shakiness or similar issues. Also memory can get lost with lots of points and no breathing room for the eyes.

----- my eyes can pick out bits and pieces. Basically, it seems that some tests say "yes" and some say "no" and some say "we just don't know"

(I'm sure that last line crept in from a song) . . . I say any test that has any hint is a clue. Do not dismiss anything.

Not from your part of the country, I do not know the doctor you are seeing, others may. Be sure to connect with your local lyme support group as well as your state group. Be sure they are ILADS-minded (some lyme groups you might find on the web are not).


Prof. Garth Nicholson's research in Mycoplasma is to be commended. He does not treat. Still, he is THE top expert researcher in this field (although that does not mean others don't have some good insight, too). he has spoken at several ILADS conferences.

Most LLMDs are well aware of mycoplasma.

Here is his main site:

http://www.immed.org/

MYCOPLASMA


Below, about one specific strain of mycoplasma, still, interesting and, perhaps, relevant in other strains, too?:

http://www.infection-research.de/news/view/detail/item-1/scientists_find_protein_that_helps_bacteria_misdirect_immune_system/

Mycoplasma genitalium

7 February 2014 - SCRIPPS RESEARCH INSTITUTE/SCIENCE

Scientists find protein that helps bacteria misdirect immune system


http://www.amazon.com/Healing-Lyme-Disease-Coinfections-Complementary/dp/1620550083

Healing Lyme Disease Coinfections: Complementary and Holistic Treatments for Bartonella and Mycoplasma - by Stephen Harrod Buhner - 2013
-

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Keebler
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Cpn also might need an IgA test but what you have seems significant.

you say " IgeneX came back borderline positive (EQUIVOCAL) for C. Pneumoniae Igm and IgG" (end quote).

Most LLMDs are very familiar with Cpn, too, and the treatment rather mirrors that for lyme. Still, there may be differences so be sure all bases are covered.


www.cpnhelp.org

Cpn Help


http://www.davidwheldon.co.uk/ms-treatment.html

Empirical antibacterial treatment of infection with Chlamydophila pneumoniae in Multiple Sclerosis

- by David Wheldon MB FRCPath
-

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Keebler
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You are 3 hours ahead of me and it just turned midnight here so I know you are up really late. I know this must all be a lot to consider yet you can't figure it all out at once.

This is just a start to a reference file, so to speak. It's more for confirmation of action to be taken. Actually to help you rest assured that your symptoms have likely been noted by others who found help & success -- and you can, too. I hope you can compartmentalize.

REST really matters so I hope you can dim the lights and let your mind and body dream some good dreams tonight. Be in a place where everything is in balance and the rivers run smoothly.

Take care.
-

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Keebler
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Magnesium can be helpful to relieve many symptoms.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM LINKS sets


Also a cornerstone of support:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
-

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Robin123
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Thx for telling your story - it's pretty indicative of neurological impacts due to Lyme disease.

The good news is you'll start to feel better with some proper treatment with the LLMD.

Re your eye symptoms, you could try drinking mangosteen juice, an anti-inflammatory juice found in healthfood stores and online. I like the Mango-Xan version, as it's the most tart.

It works for me - ends all Lyme eye symptoms. We're all different, however, in how we respond to treatments. All we can do is try something.

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Keebler
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Wow! Thanks to Robin123 (who is a moderator) for editing in space breaks so more can read all your posts, with such key detail. Again, best of luck as you move forward.
-

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silentkid
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Thank you Robin for splitting that up. Sorry to be so wordy, there is actually so much more that i left out believe it or not.

Is this something i'll have forever, or can it be totally eradicated? Will the neuropathy in my feet go away? Thats the symptom that seems to be the most stubborn right now.

I see so many on here worse off than me that i feel lame for even complaining. Thanks again Keebler for the links... especially interesting about the mycoplasma ... i'm reading today...

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Robin123
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Thanks, Keebler and silentkid - I do it so we can read what you're saying!

Yes, with treatment, you'll do better - it's a matter of getting the bacterial load as well as the inflammation level down.

It's ok, you can mention your symptoms for discussion here.

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oceangirlSA
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Hi Silentkid

Please take a look at this study for MS and Lyme which you may want to participate in. It is being run by Dr Alan Macdonald and looks for the DNA of borrelia burgdorferi (lyme bacteria) in CSF.

http://www.lyme-ms-pathology.com

This is a free study and you do not need permission from your doctors to participate.

Hospitals usually keep left over CSF for up to one year, and the patient is entitled to use the left over fluid to use in research studies like this.

Your results are given to you to share with your doctors.

My son was just accepted into the study and it looks amazing. The technology is cutting edge and should give you some answers.

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Keebler
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Adding to oceangirlSA's post, whether you do that study or not, some good detail from Dr. MacDonald:

He is a top researcher, ILADS member / presenter with an excellent reputation. Although NOT a treating doctor, ALL good LLMDs and LL NDs should know his work.


Dr. Alan MacDonald: Pathologist, Lyme Disease Expert

The Biology of Lyme Disease: An Expert's Perspective - July 2013

http://www.youtube.com/watch?v=r8tESJVvM88

Video Part I - 26 minutes


http://www.youtube.com/watch?v=2RATCS-3v9Q

Part II - 29 minutes


http://www.youtube.com/watch?v=FEjNMlNM3l8

Part III - 26 minutes
-

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silentkid
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Keebler/OceanGirl

Thank you. I am very familiar with Alan MacDonald, he is a personal hero. I first learned about him from Under Our Skin.

This study looks interesting, i dont know if i qualify if i have been diagnosed with Lyme, it seems they are looking for MS diagnosed subjects....

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DaveNJ
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SilentKid,

Just want to throw out one thing as you advance your knowledge here. My first 10 tests were all negative and that included a spinal tap. These tests were done over a two year period where my symptoms got worse....after treating my test came back positive.

that sums up the effectiveness of tests.

Dave

--------------------
On my journey to wellness - One day at a time.

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Keebler
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Glad DaveNJ mentioned the spinal tap -- as a test for lyme, it's a terrible test. No need for it as it's very unreliable.

In the study that Dr. MacD seems to be undertaking it appears that the methods used to test the fluid are not at all the same as a test a regular doctor would order on the CSF (cerebral spinal fluid) from a spinal tap or lumbar puncture.

Just be very clear that under normal circumstances it would be very rare that a spinal tap / lumbar puncture test would find find lyme when there. It can but it's very rare due to the regular test method deficits, it misses it most often.

Even if it would find it, with most regular doctors, they would still not treat long enough or complexly enough. Not worth the risk just to try to prove something.

But that matter is complete and separate from any study that MacDonald may be doing. There is a difference in "culturing" borrelia as he might be doing -- it takes time and much more rigorous exploration than the average test.
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steve1906
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Nice mystery novel sounds all too familiar.

You have to remember; when it comes to Lyme & co-infections we all have different symptoms, and react differently to medications.

I’m glad you have an LLMD; you’re on the right road early.

Many of us have the white matter that shows up on the brain MRI, myself included. They told me MS at first, and then changed it to aging; this is very, very common.

Your symptoms: These all relate to Lyme
Numbness & tingling
Carpal tunnel
Dizzy
Vision problems
Vertigo
Cyst
Sinus issues
Depressed/anxiety
Exhausted
Head pressure

quote:
Isnt this totally freaking insane that after all those negative test results, and months of misery, i now have a lab telling me that there is a detection of Lyme in my system? Is this what was causing my troubles, and its not MS at all?
Your blood work says Lyme….

quote:
Doctor told me that he 'cant put my symptoms together
Again, this is very common…

quote:
my 18 month old son got his Varicella vaccine on Thursday, October 3rd, the day before the vision symptoms started..
I can’t see how this would be related to your vision symptoms?

Your right hand man going forward is your LLMD.

Try not to get stressed; it causes symptoms to get much worse.

Have you read Dr. B’s 2008 Guidelines for treatment? (It's a MUST read) http://www.lymenet.org/BurrGuide200810.pdf

Keep positive, and keep posting here and do your research.

A few members above gave you a lot of information, study it and get back to us.

Steve

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Everything I say is just my opinion!

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droid1226
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Sounds like Lyme, nothing else. My first round of tests, showed nothing....not one Lyme positive or co infection. After some self treatment with antibiotics for almost 2 months, I retested. Nine popped up, not including bartonella which I have streaks so I know I have as well.

I also had a positive ELISA which had previously been negative. I don't know the science, I just know it took being on antibiotics while giving blood, for positives to show up. And I had a lot.

I personally would never believe in MS, except progressive MS which may just be an MND.While there may be some true MS, it's infectious for the most part if not all.

Q fever is a massive clue. Regardless of the fact it later came up negative. Go with that. If a medical investigator looked at your case, that would be the smoking gun. Besides the fact that almost every symptom you have sounds like Lyme.

A positive 31 on the WB is huge as well. Lyme specific. A good Lyme dr would see symptoms along with that and it wouldn't even be a clinical diagnosis. They'd call that a pos WB.

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http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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seibertneurolyme
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silentkid,

Here are a couple of recent threads discussing white matter brain lesions.

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/127876

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/127784


Your MRI report is one of the most detailed ones I have ever seen -- hubby's 10 or so brain MRI's done over the years usually only said something like several lesions without giving an exact number and did not describe their location in detail.

It sounds like you are already well on the way to a diagnosis and treatment plan for lyme disease.

And yes, it is common to have multiple tickborne diseases and other viral and bacterial infections. Sometimes it can be a chicken and egg question as to what came first, but to recover your health it is very important to address all known infections.

Bea Seibert

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LisaK
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SOrry about you going through this.

I have had all your same symptoms and more. FUnny, actually, when I first went to a rheumatologist 13 yrs ago for trigger finger, hand tingling and numbness- who knew it would lead me here!

I wish I would have known 16 yrs ago what I know NOW!

It sounds like you have lyme and other things that usually go along with it.

Just for example- I have now tested + for:
Lyme
babs
bart
RMSF
strep
varicella
tapeworm
blastosystis
CMV

Best of all to you

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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dbpei
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silentkid, sorry how your life changed suddenly on your birthday [Frown] . What a nightmare you have been through (as many of us here know so well).

You sound very sharp and determined to figure this out and do whatever it takes to get well. These are very good traits to have when it comes to fighting this disease.

I am so very impressed with what you have already started doing while waiting for your appointment with an LLMD.

Each case is very different and it takes time and patience to get better. And often, you feel worse before you feel better when you are getting rid of this persistent and very smart bacteria. (Herxheimer reactions)

It is so unfortunate that the mainstream medical establishment has so much to learn about Lyme and the many related tick born illnesses that go along with it. It is a shock for most of us to learn this - as we put so much faith in our doctors.

I wish you the best and hope you will keep on writing here to ask questions and/or update us on how you are doing.

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Catgirl
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I agree with Droid, it's lyme (not MS). Sorry to be so blunt, but everyone above has already provided good info.

There are a couple of really good books worth getting regarding lyme: Cure Unknown (Weintraub) and Why Can't I Get Better?

Welcome to Lymenet!

http://www.amazon.com/Cure-Unknown-Revised-Edition-Epidemic/dp/1250044561/ref=sr_1_1?ie=UTF8&qid=1393086627&sr=8-1&keywords=book%2C+cure+unknown

http://www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400/ref=sr_1_1?ie=UTF8&qid=1393086526&sr=8-1&keywords=book%2C+horowitz%2C+why+can%27t+I+get+better

[ 03-05-2014, 07:35 PM: Message edited by: faithful777 ]

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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silentkid
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Can you help me reconcile this worry? I've read that when there are oligoclonal bands in the CSF that are NOT in the serum, that is an indicator that it is NOT Lyme. I've got 10. [Frown]

[ 02-22-2014, 01:25 PM: Message edited by: silentkid ]

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steve1906
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silentkid, I remember reading that statement you made some years ago.

I'm going to look into that thought.

Steve

--------------------
Everything I say is just my opinion!

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silentkid
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maybe i found the answer - still could be Lyme according to this table: http://3.bp.blogspot.com/-aF2IaX-y8kU/UDaO7deByVI/AAAAAAAAAGc/V4vbPozwDMA/s1600/Screen+Shot+2012-08-23+at+21.13.16.png
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JamesNYC
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A) The CDC criteria is not a diagnostic one. It's a epidemiologic survey criteria for counting lyme cases. That's why your triple + 31kda band was ignored (you might have had the lyme vaccine!)

B) you could (probably) have co-infections that can exacerbate the symptoms.

C) they are "guessing" MS because they have nothing else (although I suppose it's possible you have both—God forbid).

D) You have very suggestive symptoms and test results for lyme. Lyme can be cured/managed. I'd rather have that than MS.

E) Until you eliminate lyme it should be seen as the most likely cause. Especially since the Drs are at a loss for any other GOOD diagnosis.

F) Welcome, and good luck!

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silentkid
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James, thank you.

A) yes, i know, its ridiculous this whole band 31/34 thing. No i never had the vaccine.
B) I just got my coinfections tests back - Bart, Babs, Ehrlychiosis, Rickettsia all negative. CD57 panel was normal except slightly elevated Eosinophils. However, the coinfections got done at Labcorp and i am considering having IgeneX redo them (worth it?)
C) I know. I hope not!
D) I agree! Although Lyme aint no picnic!

Thanks for your reply!

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Lymetoo
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Wow... I just now saw this thread. Sorry I missed it when you posted it, silentkid!

I do hope you have found an LLMD by this time. If you take away every finding, but leave the fact that you have a positive reading on Bands 83-93 .. then it says LYME to me.

-

23-25 kDa IgM (-) IgG (IND)
31 kDa IgM (+) IgG (+++)
39 kDa IgM (IND) IgG (IND)
41 kDa IgM (+) IgG (++)
58 kDa IgM (-) IgG (+)
83-93 kDa IgM (++) IgG (-)

-

You have several Lyme-specific bands there. Bands 83-93 is the DNA of the Bb. Find a doctor who will treat you long term.

Important info on MS and Lyme:

http://www.youtube.com/watch?v=s3_JwDPqGAg&feature=youtu.be

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--Lymetutu--
Opinions, not medical advice!

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D Bergy
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Lyme, MS, likely the same disease 95% of the time.

The reduction in symptoms while on the ABX pretty much proves it. Mycoplasma is so common it very well could be involved also. Vertigo symptoms could be from Lyme or A coinfection. Bart treatment caused balance problems in my wife.

Hope you get a handle on it soon.

Dan

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