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Posted 9/7/2019 10:58 PM (GMT 0)
Hi All,

I'm new. 44 yr-old female in So Cal. I was dx'd in 2014 with Lyme based on a positive IgM W. Blot test & symptoms from my LL CNP-RN in New Mexico at the time. I had mostly neuro symptoms, twitching, a crampy left leg arm, left arm, tingling, weakness w/o paralysis, a slew of strange sensory issues, jaw jerks while sleeping, and numbness. m (I've had minimal joint pain mostly around my left shoulder & clavicle). I had noticed symptoms as early as 2011 when I was pregnant with my daughter. Then in the fall of 2011 I was dx'd w/a reinfection of EBV, I was also being treated for a latent TB infection I discovered I had based on a pos. PPD from my husband. We think we were exposed when we were stationed in SE Asia for my husband's tour in the service. Even though I was dx'd based on a Western Blot, had symptoms that aligned & responded to ABX (I was on them for 6 mos. before I completely felt better), I never tested positive for any other associated tick borne co-infections commonly seen w/Lyme sufferers. IE Babs, Erlichia, Bartonella...etc.etc.

Fast forward to 2019, I've since moved from NM to CA. In June I started with a pharyngeal spasm, tight painful neck, vasomotor rhinitis, & swallowing issues. I sought treatment through a rheumatologist that treats Lyme. They did a fair amount of testing on me to which I only Elisa tested 1 band pos (18) for Lyme...negative for Western Blot but positive TPO antibodies for Hashi's, and positive Sjogren's antibodies but negative ANA. I was prescribed Doxycycline at 50 mg twice per day (I'm petite) & could not tolerate it. Started with liver/gb toxicity symptoms so I notified my provider and stopped it. I started self treating with Lyme herbs. Now I've started with a jelly arm/legs weakness and tingling, that I had when I treated the first time (it's dreadful) and a fullness/bloating in my diaphragm that's like a shortness of breath sensation. Relieved by belching. Is this die-off from a herx? A strange sensation that feels like I've been crying, but haven't. I don't know how to explain it. This is such a bizarre condition.

Questions: is this Lyme or some sort of cross reactivity? Especially for a second time around & w/o any positivity for con-infections? Grew up in the Southwest even though I visited the East Coast throughout my childhood & even lived in the East Coast as an adult. Wouldn't have known a tick or tick-bite from Bora Bora.

Have had an MRI w/subtle foci in cerebrum but considered benign as far MS is concerned. Also had an EMG back in 2014, was negative.

Anyone have any ideas? Thanks!

Post Edited (ElizKA26) : 9/7/2019 5:09:04 PM (GMT-6)

Posted 9/7/2019 11:57 PM (GMT 0)
Welcome, ElizKA26!

shortness of breath sensation could be the coinfection Babesia.

The tests can't be used to rule out the coinfections...they're just not good enough.

It's likely you weren't treated long enough and didn't address possible coinfections the first time around...and/or you have been re-infected.

I never saw a tick bite...or even a tick on me...No bullseye rash.

My advice would be to seek out a LL Dr. for an evaluation.
Posted 9/8/2019 12:10 AM (GMT 0)
Hi, thank you! Hi Girlie, I am seeing a rheumy that is an LLMD and studied with Charles Jones. smile

Hi,JovaLyme, no one told me I didn't have co-infections per se, I simply tested negative for all them. From Babs, Anaplasma, Erlichia, Myco, Rocky Mountain Spotted Fever. My LLMD currently is suspecting Babs. smile

I was suspected of having co-infections the first time & tested for all of them. One of the co-infections I suspected of having was Bartonella & tested through Galaxy, to which I was a big fat negative. I was on abx for six months. From Omnicef & Rifampin, to Omnicef & Cipro, Omnicef & Azithromycin, to finally Omnicef & Bactrim to which ended my misery initially.

Herbs I was on Cats Claw, Oil of Oregano, Houtynnia. All of this was initially helpful.

Then the following year, Alinia. Thanks again, yes you answered what I have been told many times, that the co-infections are almost never detected, it's just that on many forums I see many that have reported testing positive for them. Is confusing to me at times smile

Post Edited (ElizKA26) : 9/7/2019 6:19:50 PM (GMT-6)

Posted 9/8/2019 12:40 AM (GMT 0)
Do you mean THE Charles Ray Jones - the pediatric LLMD?

I love that man (haven’t met him tho) - he’s so caring and dedicated - to the point of not retiring - what is he now .. 84?
Posted 9/8/2019 12:51 AM (GMT 0)
Yes...I see my LLMD's PA that studied with him specifically. And thanks again for responding! smile
Posted 9/8/2019 1:24 AM (GMT 0)
I’m one who tested positive for bart.

Initially in 2014 I tested positive for lyme via Igenex WB (after a negative IFA here in Canada where they wouidnt proceed to a WB unless the screening test (Elisa or IFA) was positive.

I treated for over 1 1/2 years - lyme and then lyme and bart... then kind of stopped anything consistently for several months - in that time I saw a LLND not too far from me as I was thinking of trying the LDI treatment plus I wanted a new set of eyes to look into my case.
She had been testing some of her patients at an unknown lab back east and had some good results .
She asked if I was interested.
Since the cost was only $125 per infection for pcr blood AND urine, I decided to test for Babesia, Bartonella, and Candida (the LLND wanted the Candida.

I pulled a positive for bart - yup after all that treatment... others were negative but with pcr - that doesn’t mean anything really.

It’s hit or miss with the pcr - I just got lucky .
I knew I had bart based on my history and my symptoms but was wondering if it was still flourishing s after all that treatment.
Posted 9/8/2019 1:57 AM (GMT 0)
Wow, I guess I'm lucky bc I was tested for both the Elisa and WB even though the Elisa was only one band + second time around.

I didn't realize in Canada it's just as "red-tapish" w/Lyme testing. It is that way in the US of course depending where you go.

How are you doing now?

BTW, Bartonella seems lots more probable than Lyme in my case as I had a pet cat.
Posted 9/8/2019 4:53 AM (GMT 0)
Not many MD’s know much about Lyme disease and most still say it’s rare here.

So we see LLND’s for treatment unless we go to the States for treatment.

I’m fortunate to have an MD who supports my diagnosis - she’s wonderful.

I grew up with many cats. Had lots of bites and scratches.
I think I was harbouring it for a long time.
I went through a very long drawn out stressful period of time (for 3 years) with my elderly father and that’s when I got sick - it came on suddenly and hit me hard.
Very very low time of my life.

Still fighting and hoping to lose the last few symptoms before my stomach is wrecked from the abx.

I have a few left - have had 30 something symptoms.

It’s depressing to think about the years I’ve lost being sick and draining the finances... and building debt.
I think I have some ptsd from the trauma in the beginning... should prob see a counsellor or maybe hypnosis would be better... lol

Excuse my rambling...
Posted 9/8/2019 5:35 AM (GMT 0)
@Girlie it is absolutely heartbreaking to think how this disease and it's complications has cost so many their lives and livelihoods. So please, feel free to ramble on. smile

Even more heartbreaking how the greater conventional medical community will not widely accept it as a legitimate affliction as it does cancer or diabetes.

I, too have not been spared a psychological or financial fallout from this pathogenic nightmare. My body started betraying me at 19. It wouldn't be until my 30's I started getting answers, but having kids, I feel, pushed me over the edge.

I have not been able to work since having them, as that's when I was diagnosed. A year after I was initially treated, I tried to pursue going back to work, but the toll it's taken on my cognitive and mental function cost me the opportunity. Despite pursuing a graduate degree.

My heart and prayers go out to you...all of us touched by Lyme.
Posted 9/9/2019 4:04 PM (GMT 0)
Have you heard of the book Plague by Dr. Judy Mikovits?

She tells the story of finding (along with multiple scientists worldwide) a retrovirus that affects the immune system cells specifically. An infection, hormones, or a vaccine, can stimulate those immune cells and cause the virus to replicate along with the cells.

Long story short, they found these retrovirus in much higher levels in Lyme, chronic fatigue, and autism patients amongst others. They basically destroy the immune system, and then this condition causes a form of immune deficiency. It skews the immune system towards being over-reactive with a rise in helper cells and low amount of inhibitory immune cells. Thus the inflammatory problems.

She has videos on Youtube with Dr. Mercola and a few others.

My daugher has had a steady physical decline with a Lyme diagnosis finally (partial positive Western Blot for Lyme, which I learned from Dr. Mikovits that there's also a cross reaction on this test with this retrovirus). We've treated it with antibiotics and herbal (Cowden protocol) for a long time. I really been thinking it seems she has an underlying immune system problem. This condition makes complete sense. Interesting to note that anti-virals are often really effective for Lyme treatment.

I'm not saying Lyme and co-infections aren't the problem, but there may be an underlying dysfunction that causes suseptibility to many infections and high inflammation levels.
Posted 9/9/2019 6:47 PM (GMT 0)
Hi jesguard - welcome!

I haven’t heard of the book you mentioned.. it is interesting.

Something is certainly amiss with these diseases and how difficult it is to treat them effectively

Sorry to hear your daughter hasn’t responded to treatment. Is she currently on treatment?
Posted 9/9/2019 10:05 PM (GMT 0)

jesguard said...
Have you heard of the book Plague by Dr. Judy Mikovits?

She tells the story of finding (along with multiple scientists worldwide) a retrovirus that affects the immune system cells specifically. An infection, hormones, or a vaccine, can stimulate those immune cells and cause the virus to replicate along with the cells.

Long story short, they found these retrovirus in much higher levels in Lyme, chronic fatigue, and autism patients amongst others. They basically destroy the immune system, and then this condition causes a form of immune deficiency. It skews the immune system towards being over-reactive with a rise in helper cells and low amount of inhibitory immune cells. Thus the inflammatory problems.

She has videos on Youtube with Dr. Mercola and a few others.

My daugher has had a steady physical decline with a Lyme diagnosis finally (partial positive Western Blot for Lyme, which I learned from Dr. Mikovits that there's also a cross reaction on this test with this retrovirus). We've treated it with antibiotics and herbal (Cowden protocol) for a long time. I really been thinking it seems she has an underlying immune system problem. This condition makes complete sense. Interesting to note that anti-virals are often really effective for Lyme treatment.

I'm not saying Lyme and co-infections aren't the problem, but there may be an underlying dysfunction that causes suseptibility to many infections and high inflammation levels.

Hi Jesguard,

I've not heard about Judy Mikovitz. I did look her up and her story speaks to corruption going on in the field of biomedical research because she obviously stumbled upon something that threatens a largely well-regarded mainstream paradigm that "must & always be adhered to." She "knows too much" and that can be very a dangerous thing regardless how right or correct she is. Sad for the rest of us!

I believe this "chronic lyme" "post-treatment Lyme" (whatever you want to call it) disease at it's basis has to do w/a genetic predisposition or genetic mutation that may lie in our immune systems. Most definitely.

I also wish you and especially, your daughter the best of health and wellness. My heart goes out to the both of you! smile
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