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Help! After 3 YEARS of Undiagnosed Illness, I am convinced I have Lyme, Barts, +++

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Posted 4/13/2018 2:20 PM (GMT -5)
Hi all,
I am new. I found your site while doing my own research, which I seem to do hours and hours of (on the days that I can stay awake). I really wish I could focus long enough on one subject to study for some type of medical certificate, because I have a wealth of knowledge stored somewhere in my brain...and PC now.
I live in SC, have spent most of my life outdoors, and have been bit by many ticks (some very recently). I have never felt great... but in the last 3 years, I have been "Homebound", due to incapacitating Heat Intolerance (which sets off a flare). The FLARE then consists of Intense Skin Itching - primarily on my torso; Fever (101-102); extreme top side headache; Sore throat, left side earache, & mucous-y cough - for 2 days; Stomach Pain; Chest Pain; Swollen tongue, with small blisters in my mouth; RASHES that appear sometimes lightly on my arms and legs with just 5 minutes in the sun... and small water blisters that appear, if I am outside long enough to sweat in temperatures above 73 degrees. My body's thermostat quit working completely in 2014, along with my ability to think, and control my moods and emotions.
To me, this all sounds like a Lyme and Barts co-infection. However, getting a diagnosis in SC is beyond difficult.
Please help.
Willing to travel, and ready to get well.

NoMoDiggin eyes
Posted 4/13/2018 2:32 PM (GMT -5)
Welcome! So sorry for all the suffering. I can relate to what you said about researching. If only I could remember all the stuff I read and be able to relate it to someone else.

Certainly sounds like you have some major issues going on.

Have you had any tests at all for tick born diseases?

What about other pathogens - viruses, parasites, other bacterial infections?

While I have had some of the symptoms you mentioned at various times, there are things in that cluster of symptoms that sound different from what I normally hear about on here that could be other tick born diseases that are not talked about as much.

I am from Georgia, so howdy neighbor 😊
Posted 4/13/2018 2:46 PM (GMT -5)
Hi NoMoDiggin...

I truly feel your pain! I truly believe that I have Lyme (plus some co-infections)! I have had every test and even went to see an LLMD who ran all the bloodwork for Lyme and Co-Infections and everything keeps coming back negative. I recently had a spinal tap and biopsy of the Morphea on my leg so I am awaiting these results. I was diagnosed with Morphea last year (via biopsy) and have been feeling progressively worse ever since. I am slightly ANA positive and I've tested for almost every autoimmune condition possible and everything keeps coming back negative. Been to see almost every type of doctor and still no diagnosis!!! My symptoms are the following....

Morphea
White Matter Lesion
Head and neck burining and pain
Arm and leg numbness
Raynauds
Prickly stinging sensations in finger and arms
Rashes on arms
SOB
RibCage pain
Extreme leg muscle and joint pain
Constant burning in mouth
Thyroid Nodule
Swelling in throat
Stomach pain/reflux
Night Sweats
Facial palsy

Quite a list right!! And, I am pissed because no one wants to treat me without positive labs! I (like you) feel like a professional now due to all the research that I've done. I do not remember getting bit by a tick but I never checked myself either and I spent almost a lifetime raking leaves in my big yard and tending to the landscaping unprotected. Not know much about Lyme at all! I know now though! I think I've had this for sometime (5 years plus maybe) but just started feeling progressively symptomatic this last year.
Posted 4/13/2018 2:50 PM (GMT -5)

Wellness13 said...
Hi NoMoDiggin...

I truly feel your pain! I truly believe that I have Lyme (plus some co-infections)! I have had every test and even went to see an LLMD who ran all the bloodwork for Lyme and Co-Infections and everything keeps coming back negative. I recently had a spinal tap and biopsy of the Morphea on my leg so I am awaiting these results. I was diagnosed with Morphea last year (via biopsy) and have been feeling progressively worse ever since. I am slightly ANA positive and I've tested for almost every autoimmune condition possible and everything keeps coming back negative. Been to see almost every type of doctor and still no diagnosis!!! My symptoms are the following....

Morphea
White Matter Lesion
Head and neck burining and pain
Arm and leg numbness
Raynauds
Prickly stinging sensations in finger and arms
Rashes on arms
SOB
RibCage pain
Extreme leg muscle and joint pain
Constant burning in mouth
Thyroid Nodule
Swelling in throat
Stomach pain/reflux
Night Sweats
Facial palsy

Quite a list right!! And, I am pissed because no one wants to treat me without positive labs! I (like you) feel like a professional now due to all the research that I've done. I do not remember getting bit by a tick but I never checked myself either and I spent almost a lifetime raking leaves in my big yard and tending to the landscaping unprotected. Not know much about Lyme at all! I know now though! I think I've had this for sometime (5 years plus maybe) but just started feeling progressively symptomatic this last year.

Did you have a Lyme Western blot? Can you look at the results and tell us if any of the bands were positive?
Posted 4/13/2018 3:30 PM (GMT -5)

NoMoDiggin said...
Hi all,
I am new. I found your site while doing my own research, which I seem to do hours and hours of (on the days that I can stay awake). I really wish I could focus long enough on one subject to study for some type of medical certificate, because I have a wealth of knowledge stored somewhere in my brain...and PC now.
I live in SC, have spent most of my life outdoors, and have been bit by many ticks (some very recently). I have never felt great... but in the last 3 years, I have been "Homebound", due to incapacitating Heat Intolerance (which sets off a flare). The FLARE then consists of Intense Skin Itching - primarily on my torso; Fever (101-102); extreme top side headache; Sore throat, left side earache, & mucous-y cough - for 2 days; Stomach Pain; Chest Pain; Swollen tongue, with small blisters in my mouth; RASHES that appear sometimes lightly on my arms and legs with just 5 minutes in the sun... and small water blisters that appear, if I am outside long enough to sweat in temperatures above 73 degrees. My body's thermostat quit working completely in 2014, along with my ability to think, and control my moods and emotions.
To me, this all sounds like a Lyme and Barts co-infection. However, getting a diagnosis in SC is beyond difficult.
Please help.
Willing to travel, and ready to get well.

NoMoDiggin eyes

Welcome, NoMoDiggin!


I suggest you find a LLMD and schedule an appt for an evaluation.
While you're waiting for your appt (it can take several weeks to get in), you can call Igenex and ask for a test kit...if you have a Dr. that will sign the lab req for you to get tested.
The best bang for your buck is the Lyme WB Igm and IgG for $250.

Take your results to the appt.

Alternatively, you can wait for the appt and do what the LLMD suggests re: testing.

We can help you find a LLMD - start a new thread: "Looking for LLMD in/neasr____" and fill in the blank with your location.

you can also email me and I'll check my list and see what I have for your location.
Posted 4/13/2018 3:33 PM (GMT -5)

Wellness13 said...
Hi NoMoDiggin...

I truly feel your pain! I truly believe that I have Lyme (plus some co-infections)! I have had every test and even went to see an LLMD who ran all the bloodwork for Lyme and Co-Infections and everything keeps coming back negative. I recently had a spinal tap and biopsy of the Morphea on my leg so I am awaiting these results. I was diagnosed with Morphea last year (via biopsy) and have been feeling progressively worse ever since. I am slightly ANA positive and I've tested for almost every autoimmune condition possible and everything keeps coming back negative. Been to see almost every type of doctor and still no diagnosis!!! My symptoms are the following....

Morphea
White Matter Lesion
Head and neck burining and pain
Arm and leg numbness
Raynauds
Prickly stinging sensations in finger and arms
Rashes on arms
SOB
RibCage pain
Extreme leg muscle and joint pain
Constant burning in mouth
Thyroid Nodule
Swelling in throat
Stomach pain/reflux
Night Sweats
Facial palsy

Quite a list right!! And, I am pissed because no one wants to treat me without positive labs! I (like you) feel like a professional now due to all the research that I've done. I do not remember getting bit by a tick but I never checked myself either and I spent almost a lifetime raking leaves in my big yard and tending to the landscaping unprotected. Not know much about Lyme at all! I know now though! I think I've had this for sometime (5 years plus maybe) but just started feeling progressively symptomatic this last year.

I think you should try another LLMD. There are LLMD's who will treat clinically and not rely on the testing.
Are you willing to travel?
If you decide to test again..I suggest just the Igenex WB for Lyme IgM and IgG for $250.

I also am wondering what your test results on the WB was? and could you post them?
Posted 4/13/2018 4:40 PM (GMT -5)
Y'ALL ARE THE GREATEST! I have been trying to get someone to "hear me" for 3 years, and you folks are the first to take the time to do that!! Thank you, from the bottom of my heart!
WalkingByFaith Over the years, I have had a few other significant "other infections". (Malaria; Mono - which still shows as "Past EBV" on labs; and have been exposed to numerous "scary things" while I served as a Primitive Lab Tech in Kenya (1990). No gloves, face shield... but plenty of bodily fluids.
I am seeing a GP who has seen me for 19 years, but is not a LLMD. She did the regular Bb test and a Western Blot in 2015 or 2016, but I was told that both were negative. ***I will have to find my copies and get back to you.
She did ANA testing, and I couldn't honestly even tell you what is what?! She always just says, "I know you are sick, but I have no idea what it is."

DECEMBER 2015

CCP Antibodies IgG/IgA <1 (0-19)
Endomysial Antibody IgA Negative
t-Transglutaminase (tTg) IgA <2 (0-3)
Immunoglobulin A, Qn, Serum 121mg/dL (91-414)
Creatine Kinase, Total, Serum 57 (24-173)

HIGH BLOODWORK, drawn 9/5/2017 - Rash(s) and Lyme/Bart symptoms LASTING 4 MONTHS.
**NO LYME TESTING DONE THIS TIME... BUT, I was treated with 2 weeks worth of DOXY Plus 10 Days of Prednisone. More bloodwork was done on 9/16, and 10 DAYS OF CIPRO WAS GIVEN.

High levels on 9/5/2017, and Currently HIGH WHENEVER I AM SICK:
C-Reactive Protein, WBC1, Hct, NE%, NE absolute, NA, K, CL, BUN, A/G, HDLC3
GFR NON BLK (>60 ml/min/1.73m2)
CRP-NONCARDIAC

LOW levels on 9/5/2017, and usually low when sick:
MCHC, MPV, MO%, EO%, BA%, ALB2, TBILI, ESR 4 (0-20)

I don't know if that sheds any light on anything for any of you. I have almost EVERY symptom listed on the "really in depth" Bartonella Lists... (No Bell's Palsy).

OH!!! and YES, I am willing to travel to a LLMD who will take all my Clinical History into account. I HAVE KEPT EXCELLENT RECORDS, AND A PHOTO JOURNAL. EWWWW!
Posted 4/13/2018 10:31 PM (GMT -5)
NoMoDiggin,

Okay, so my instincts were on target. You do have some unusual things in your history. Good you kept good records. While your GP sounds like a good and loyal doctor, I'd definitely say it's time to be evaluated by fresh eyes from a doctor who is well acquainted with tick born disease and will run functional labs and can properly evaluate test results on all the bacterial and viral infections. Be selective when you pick your doctor. You want someone who will be thorough and evaluate all of your history and not just pick out the parts they know and want to treat and ignore the rest.

If you find such a doctor, please let us know.
Posted 4/13/2018 11:04 PM (GMT -5)
NoMoDiggin,

One more thing I want to add. I understand suffering and searching for years trying to find the cause of your mystery illness. It took me 7.5 years. I just want to caution you not to latch on too tightly to the expectation of a Lyme and/or bartonella diagnosis. While you may indeed have one or both of those, you may have other infections that are in the forefront or are causing your most serious symptoms. I think unraveling all this is going to require more patience and perseverance.

I didn't say any of that to discourage you. I just wouldn't want you to jump right into treating Lyme/bart if there are other infections that will need to be treated first to achieve success. The whole Lyme disease cluster of infections and bodily dysfunction really is like peeling off layers.

I tend to think of it like the Jenga puzzle where you try to pull out wooden puzzle pieces without the whole thing collapsing. I'm not one who has it all together and removed pieces in the right order. I'm struggling a lot and try to help others avoid the struggles they might can avoid. We all struggle enough as it is.
Posted 4/14/2018 1:32 PM (GMT -5)

WalkingbyFaith said...
NoMoDiggin,

Okay, so my instincts were on target. You do have some unusual things in your history. Good you kept good records. While your GP sounds like a good and loyal doctor, I'd definitely say it's time to be evaluated by fresh eyes from a doctor who is well acquainted with tick born disease and will run functional labs and can properly evaluate test results on all the bacterial and viral infections. Be selective when you pick your doctor. You want someone who will be thorough and evaluate all of your history and not just pick out the parts they know and want to treat and ignore the rest.

If you find such a doctor, please let us know.


WalkingByFaith, I appreciate your comments so much. I am definitely planning to see another doctor "for a fresh set of eyes". I have an appointment at the end of June with an Endo, but I don't know if that is the right kind of doc to see. I'm just grasping at straws. Looking at your next message, too, it's probably not a bad idea to keep the appt, and let him look at all my bloodwork.
ONE MORE INTERESTING FACT: I have 3 Grown kids. One has Lupus. One has Celiac. One has Hypothyroidism. ANY OTHER THOUGHTS, ANYONE?
Posted 4/14/2018 2:41 PM (GMT -5)
3 grown kids with 3 different autoimmune diseases

DISCLAIMER: I have NO personal knowledge of this doctor or clinic in North Georgia, but I came upon his website 2 years ago when I gave up on conventional doctors and was looking for someone who might be able to help me. I didn't go to him, since he's about 4 hours away. I ended up looking at local people (all minimally helpful). I don't recall seeing anything Lyme or even infection related, but he claims to have cured himself of RA and many others of various autoimmune diseases. He focuses on diet and doesn't push a lot of supplements.

Putting this out there in case you or your children might be interested.

Here's the website: www.goldbergclinic.com/
Posted 4/14/2018 9:56 PM (GMT -5)
The water blisters are miliaria, I got them once when I hadn't been sweating enough during the winter. Dry brushing might help to clear out your pores. Do you have any tingling, numbness, burning, vibrations, or neuropathic pain?

Have you been seen by an ID who could rule out infections from Kenya? And do you know if your child with Lupus has a positive ANA and what the titer was? My first diagnosis was Lupus, the chances are about 2 in 100,000 for males, and the rheumatologist knew that I had hundreds of tick bites over the course of my lifetime. My ANA was always negative or at the lowest titer.
Posted 4/14/2018 10:45 PM (GMT -5)
since you mention africa, get tested for cytomegalovirus, its in the herpes family

also this all sounds a lot like herpes zoster aka human herpesvirus type 3 (HHV-3) , has that been tested for?
Posted 4/15/2018 9:27 AM (GMT -5)
acarined and Lapis_29
Thank you for your responses. I have tingling, numbness, vibrations, and neuropathic pain in both hands and my feet very, very often. It is not constant, but I take a lot of Gabapentin (Neurontin) and even Topamax, which I am sure sort of keeps it at bay. My skin itches all the time, and at night, it's more of a Burning Itch. When I am outside in ANY SUNLIGHT, OR EVEN HEAT OVER 72 DEGREES(inside or outside) - and especially if I EXERT MYSELF AT ALL - my torso burns like fire. This is a sign that I MUST get to COLD WATER OR ICE to douse my body, or put ice on my head, chest, and back - or risk passing out where I am. I have passed out numerous times inside and outside. *** All of this really kicked up bad after I had been GOING OUT IN THE WOODS and photographing old barns & abandoned buildings; DIGGING AROUND IN OLD FARM DIRT for old bottles and war relics; and my FIRST SERIOUS, ABX RESISTANT RASH THAT LASTED 8 WEEKS came on the heels of a tick bite AND holding my daughter's baby pig for 45 minutes. (Ive long suspected that it had something to do with the PIG, because the rash was SO PROMINENT right where the pig was lying in the crook of my right arm... As I read more, though, I wonder about MYCOPLASMA, LYME, BARTONELLOSIS, AND P. FALCIPARUM MALARIA.)
***I have Lost my short term memory; ADHD; have horrible Depression; PTSD; Anxiety; BiPolar 2; and am completely Anti-social and easily Angered. I was NOT LIKE THIS BEFORE 2014.
I have hesitated to list every symptom I have, but suffice it to say that I have been researching my symptoms for 3 years, and my list matches all of these, PLUS Lupus, MS, Familial Mediterranean Fever Syndrome; Fibromyalgia; ++
My Doctor has, at different times from 2014-present, tested me (or referred me to specialists who have tested me) for MS, Lupus, and Porphyria. I currently have diagnoses for Fibromyalgia and Acute Intermittent Porphyria - mostly due to my INTENSE reaction to sunlight, I think.
I would be happy to post a FEW pics, if you would be interested in continuing to help (lab results, etc)?
I have been tested for HIV 1/O/2 Abs-Index Value <1.00 (<1.00); and HIV 1/O/2 Abs, Qual Non-reactive (Non-reactive) This test was done 4/26/2016, and was not the test that should have been ordered, per Labcorp. It was "outdated". I believe I have been tested for Malaria over the years, meaning any time since 2000 on. I have had several Malaria Relapses, in the 90's. I've been tested for almost anything my doctor could think of.... BUT PROBABLY NOT THINGS THAT WOULD BE "OUT OF THE BOX" - like Cytomegalovirus. I have looked at that some, myself...
I WOULD REALLY LOVE TO HAVE A DOCTOR OR SOMEONE WHO READS LABS HELP ME DECIPHER MY LABS.
My daughter is ANA positive for SLE, although I do not remember her Titer. She is also Double Stranded DNA Positive.
My mother has Sjogren's and Fibro.
Her mother had RA. My whole family on my mother's side has "some sort of debilitating Auto-Immune Disease or another".
My sister's son was born in Lithuania in 2008, and was given BCG (BOVINE) Polio Innoculation, and had such a severe RASH & COMPLICATIONS, that he nearly died at 2 days old. He was rushed to Prague, and with the help of the WHO, and then back at home, he was diagnosed with LUPUS VULGARIS & COMPLETE INTERLEUKIN 12 DELETION.
I have had NO GENETIC TESTING, BUT WOULD LOVE TO. I feel as though I am a perfect candidate to "Break this Chain". MY KIDS are all in their 20's - and sick, due to whatever I have passed on to them... And now, I have ONE PRECIOUS GRANDCHILD, who I want to spare the pain and hardship we are suffering, if possible.
I hope you can follow my rambling. I've re-read it a few times to try to make it make sense.
Posted 4/15/2018 10:28 AM (GMT -5)
If you're going to look into genetics, be sure to include HLA-DR genetic tests. There are gene combinations there that predispose folks to biotoxin illness from mold, Lyme, other biotoxins.
www.survivingmold.com/diagnosis/lab-tests

Also, your symptoms could be mast cell disorder, which can lead to anaphylaxis (which can cause death). Itching, burning, fainting can be related to that. I would strongly advise you to see a Functional MD or LLMD who is knowledgeable about all of the issues and will order tests that conventional MD's will have no knowledge of.
/www.google.com/amp/s/www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/amp/
Posted 4/15/2018 12:39 PM (GMT -5)
Some of those symptoms sound like small fiber neuropathy. Your case is complex, you might have to take a long drive or even fly out to reach a LLMD capable of sorting this out. What types of treatment have been attempted, any herbs or antibiotics?
Posted 4/16/2018 2:18 PM (GMT -5)

WalkingbyFaith said...
If you're going to look into genetics, be sure to include HLA-DR genetic tests. There are gene combinations there that predispose folks to biotoxin illness from mold, Lyme, other biotoxins.
www.survivingmold.com/diagnosis/lab-tests

Also, your symptoms could be mast cell disorder, which can lead to anaphylaxis (which can cause death). Itching, burning, fainting can be related to that. I would strongly advise you to see a Functional MD or LLMD who is knowledgeable about all of the issues and will order tests that conventional MD's will have no knowledge of.
/www.google.com/amp/s/www.jillcarnahan.com/2016/10/31/mast-cell-activation-syndrome-mcas-when-histamine-goes-haywire/amp/

Thank you. I have definitely looked into Genetic Testing on my own, but have mostly researched those things specifically related to IL-12 deletion or deficiency, by googling "whatever the illness AND IL-12" . There are lots of Pub-Med articles, and a good bit of NIH-NLCB research - mostly done pre-2001. My biggest takeway is that my family would DEFINITELY BE Highly Suceptible to Mycobacteria (Bacteria, Fungus, etc). I didn't apply those studies to Ticks until recently having someone suggest Lyme to me.
****And, I do live in a home built in the 1940's, with a LEAKY ROOF, and VERY OLD CARPET.
GOOD GOD!! I started getting really sick within a year of (BOTH) getting really active outside in the woods, and moving into this house! This is what is Killing Me! smhair shakehead skull
Posted 4/16/2018 3:14 PM (GMT -5)

acarined said...
Some of those symptoms sound like small fiber neuropathy. Your case is complex, you might have to take a long drive or even fly out to reach a LLMD capable of sorting this out. What types of treatment have been attempted, any herbs or antibiotics?


Thank you, too! I have read some about small fiber neuropathy. It seems I've read about everything... And, at this point, I'm ready to drive most anywhere. I'm on Disability, so my time allows. What I don't have is Endless money, and it seems all the great doctors Don't take Medicare! Don't they know how many of us there are out here on Disability, or out of work, or otherwise "broken", because of Lyme (and similar infections)? OUR STORIES ARE "CURIOS-ER AND CURIOS-ER".

about a year into my illness, between writhing, sleeping, crying, cursing, praying, and beginning all of it again... I would occasionally think of the story
ALICE IN WONDERLAND, by Lewis Carroll

"If I had a world of my own, everything would be nonsense. Nothing would be what it is, because everything would be what it isn't. And contrary-wise, what is, it wouldn't be. And what it wouldn't be, it would. You see? - LC
Posted 4/17/2018 4:16 PM (GMT -5)

WalkingbyFaith said...

Wellness13 said...
Hi NoMoDiggin...

I truly feel your pain! I truly believe that I have Lyme (plus some co-infections)! I have had every test and even went to see an LLMD who ran all the bloodwork for Lyme and Co-Infections and everything keeps coming back negative. I recently had a spinal tap and biopsy of the Morphea on my leg so I am awaiting these results. I was diagnosed with Morphea last year (via biopsy) and have been feeling progressively worse ever since. I am slightly ANA positive and I've tested for almost every autoimmune condition possible and everything keeps coming back negative. Been to see almost every type of doctor and still no diagnosis!!! My symptoms are the following....

Morphea
White Matter Lesion
Head and neck burining and pain
Arm and leg numbness
Raynauds
Prickly stinging sensations in finger and arms
Rashes on arms
SOB
RibCage pain
Extreme leg muscle and joint pain
Constant burning in mouth
Thyroid Nodule
Swelling in throat
Stomach pain/reflux
Night Sweats
Facial palsy

Quite a list right!! And, I am pissed because no one wants to treat me without positive labs! I (like you) feel like a professional now due to all the research that I've done. I do not remember getting bit by a tick but I never checked myself either and I spent almost a lifetime raking leaves in my big yard and tending to the landscaping unprotected. Not know much about Lyme at all! I know now though! I think I've had this for sometime (5 years plus maybe) but just started feeling progressively symptomatic this last year.

Did you have a Lyme Western blot? Can you look at the results and tell us if any of the bands were positive?

I had a Lyme Western blot which was negative just like everything else. I believe that the Lyme is all in my tissues/muscles and not my blood anymore. Read about a procedure called Rolphing? Curious about how this works. However, I am tired and I just want treatment right about now. confused
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