Undiagnosed Illness - Last 4 months

Hey All,

I just thought that I should provide you all with an update on everything. I'm still trying to find a doctor to sign off on proper lyme testing but am hoping that a functional doctor will be able to help me. I just got back another negative western blot from Quest with only three active bands. So I met with an Allergist to discuss my symptoms and she is not worried from a allergy stand-point. She agreed to do the Mast Cell Activation blood and urine test as a precaution though she feels that my symptoms do not fit the profile. My most recent blood work Vitamin E, Cereal Allergy Grain Test, Mold Test, Basic Metabolic Panel, MMA Test, Thyroid Tests, Endoscopy/Colonoscopy, and many endocrine relatated tests... all have come back normal yet the wonderful symptoms still persist. I am going to meet with a functional doctor on Monday and just pay out of pocket for it. It is expensive but many people have recommended the office to me and if they can at least point me in the right direction, I'll be happy. Does anyone have any further insight?

Thanks All!

Shelin said...
Hey All,

I just thought that I should provide you all with an update on everything. I'm still trying to find a doctor to sign off on proper lyme testing but am hoping that a functional doctor will be able to help me. I just got back another negative western blot from Quest with only three active bands. So I met with an Allergist to discuss my symptoms and she is not worried from a allergy stand-point. She agreed to do the Mast Cell Activation blood and urine test as a precaution though she feels that my symptoms do not fit the profile. My most recent blood work Vitamin E, Cereal Allergy Grain Test, Mold Test, Basic Metabolic Panel, MMA Test, Thyroid Tests, Endoscopy/Colonoscopy, and many endocrine relatated tests... all have come back normal yet the wonderful symptoms still persist. I am going to meet with a functional doctor on Monday and just pay out of pocket for it. It is expensive but many people have recommended the office to me and if they can at least point me in the right direction, I'll be happy. Does anyone have any further insight?

Thanks All!

Which bands were active this time?

You could pay the extra $$ and go through TrueHealthLabs...if you can't find someone to sign off.

Shelin said...
Hey Girlie,

Here are the most recent Western Blot Results:


Report Result Ref. Range Units Status Lab
LYME DISEASE AB(IGG),BLOT NEGATIVE NEGATIVE Normal Final NL2
18 KD (IGG) BAND NON-REACTIVE Normal Final NL2
23 KD (IGG) BAND NON-REACTIVE Normal Final NL2
28 KD (IGG) BAND NON-REACTIVE Normal Final NL2
30 KD (IGG) BAND NON-REACTIVE Normal Final NL2
39 KD (IGG) BAND REACTIVE Abnormal Final NL2
41 KD (IGG) BAND NON-REACTIVE Normal Final NL2
45 KD (IGG) BAND REACTIVE Abnormal Final NL2
58 KD (IGG) BAND REACTIVE Abnormal Final NL2
66 KD (IGG) BAND NON-REACTIVE Normal Final NL2
93 KD (IGG) BAND NON-REACTIVE Normal Final NL2
LYME DISEASE AB(IGM),BLOT NEGATIVE NEGATIVE Normal Final NL2
23 KD (IGM) BAND NON-REACTIVE Normal Final NL2
39 KD (IGM) BAND NON-REACTIVE Normal Final NL2
41 KD (IGM) BAND NON-REACTIVE Normal Final NL2

Band 39 is positive - That band is specific to Lyme - a LLMD will see it as sufficient to back up a clinical diagnosis.

Dr Horowitz's questionnaire is a good gauge for assessing potential involvement of tick borne infections:
www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html

Yes, given your multi-systemic symptoms and neuro-symptoms it is very possible that tick-borne infections are playing a role in your health issues.

It's good that you are seeing an llmd to analyze your case. Another indirect gauge of potential involvement of the infections is the provocation method. You try taking broad-spectrum antimicrobials (can be herbal or pharma) and gauge response. If you get a flare in symptoms (herx) this is a very good indicator that infections are involved.

Shelin said...
Can anyone think of any other illness that I should look into with similar symptoms?

Bartonella
CIRS

CIRS is chronic inflammation from biotoxin exposure (mold, dinoflaggelates, Lyme, etc). Have you been exposed to mold? Did your symptoms start soon after moving or starting a job in a new building?

G-Ju - I am very close to Portsmouth and would love for you to send that information over to me. Thanks!

As for mold exposure, this all started about a month after I started a new job in a new building, yes. I have been spending less time in that specific office recently though as we opened a new one and the symptoms have not let up. Would I continue to be sick until getting treatment? No on else appears to be sick at the office? I also did a mold blood test which seemed to have come back fine... what else should I be looking for?

On another note, I was also thinking about the possibility of leaky gut.

Please let me know on all of this guys and thanks so much for the help!

Girlie: Can I post a link to the LLMD in a post? If not, how can I get the information to Shelin?

At this Dr's office, Lab work is covered 100% through BC/BS, but the special outside Lyme tests are not. Ex. DNA Connexions ($500 plus the cost of Deep Tissue Massage) and IgeneX (about $250).

Shelin, I don't know if I can post the actual website in this forum, but if you do a Google search with the words Vibrant Lyme Portsmouth NH, you should be able to find it.

Shelin said...
Got it, thanks!

Great! They're wonderful!

Shelin said...
G-Ju, Do my symptoms sound familiar? Did you end up getting better?

Hi Shelin,

It sounds like you had a lot more testing done than I did, but I did/do have many of the symptoms you have. After a minor surgery (just before Christmas 2018), I believe the Lyme hit me hard. It was about two weeks after the surgery that the minor symptoms I was having exploded. I think I'd had it for quite some time, but didn't really know what was going on.

Shortly after the surgery, and my symptoms started to progress, I went to a chiropractor and PCP. No one could find anything wrong with me. It wasn't until I made a trip to the ER that someone suggested Lyme. I live in the woods, have a dog, garden, hike and do a lot of wild berry picking. And, I'd pulled ticks off of me, over the years. I was convinced that I had Lyme, but several blood tests didn't reveal it. I had three REACTIVE IGg bands, 41, 58 and 66. From what I understand, 41 is the only one that "could" be Lyme, but it could be a variety of other infections. Ugh! Mine ended up being Lyme. All of my regular blood work was perfect, EKG- good, Brain scan - good. Nothing was out of whack.

At my first LLMD appt, I was told my symptoms line up with Lyme. First blood test (c-6 Peptide) showed I had Borrelia Burgdorferi. That was in mid-April. I then did the DNA Connexions test and it revealed the co-infection Bartonella, which was Confirmed in Late May. All of these tests take time. Ugh! We believe the Bartonella is what's causing my neurological symptoms.

I've been being treated since March 23rd, 2018. In March, I convinced my PCP to start me on some meds even though she didn't think I had Lyme, based on the CDC guidelines. She wasn't willing to test any further. First LLMD appt was April 9th. She kept me on Doxy because she believed I had Lyme.

Since starting meds, many of the symptoms that made me feel really sick have faded away and only make rare appearances. I still have some neurological symptoms (interior vibrations being the worst) and joint pain. We're working on those. The doc said it could take 6 months to a year, but that's just an estimate. Time and patience. Overall, I feel like I'm on the road to recovery.

Hi Shelin! I ALSO traveled all over SE Asia around the time I 1st started getting bizarre symptoms. IMO, the strains of infections that are very Specific to SE Asia(because of environment)> those strains arent looked for in North America. I believe MY M.S.I.D.'s to be from multiple sources such as mosquito bites, other insects, airborn contagions, as well as a seaborne fungus Id gotten In Indonesia.

Mycoplasma infections were rampant when I lived in Singapore. They're airborne!!! The mycoplasma there isnt even 1 of the strains tested for here. I came down w/a sudden fever once on a flight from Singapore to the states. I KNEW it was mycoplasma, and upon arrival on mainland(had a layover in hawaii), I INSISTED the Dr. Test for mycoplasma pnemonaei, but was told, "Oh, we dont test for that here in the states"! Once back in Singapore, The Dr tested, & YEP it was the SE Asian mycoplasma!!!

Anyhoo, so YES living or traveling overseas is VERY relative to a clinical diagnosis!!!!

Ive only tested positive for borrellia flagella, and Ehrliciosos thru DNA connexions. SINCE 2010, ALL four of my Igenix tests were either negative, or indeterminate.

Bartonella and mycoplasma and further mold testing has been ordered and I'll get the blood drawn on Wednesday. The functional doc/MD is almost certain that is the cause of my symptoms. I'll keep you all updated!