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Lyme on my mind

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Astrid13 recalls the alarming mental confusion associated with her life of chronic illness and explains how her own search for answers may finally be yielding results - though she still has a long road to travel...

Bad day

In 2006, following a miscarriage, I began to suffer the most horrible cognitive decline.​

A D&C had been performed under general anesthesia and after a brief recovery at the hospital, I was free to go home.​

However, the days that followed began what was to become the most confusing and alarming time of my life.​

My hormones were raging, my emotions were going haywire, and I was convinced that I had also left my brain in that cold and sterile Operating Room.

I began to mill around at home, a place I had lived in for the past 2 years and was quite familiar with. I remember making a cup of soup and then beginning to do the dishes.

But as I reached up to activate the garbage disposal, I no longer knew which of the 3 toggle switches on the tile backsplash controlled the disposal function. I froze...

It is ironic that a series of electrical switches baffled me because I also felt it was literally as if someone had flipped a switch in that high functioning part of my brain.

My days were riddled with pain and disorientation...

I got lost going to work, I got lost coming home. I carefully paid the bills using checks and paper statements. I meticulously placed the payment in the envelopes, affixed proper postage and walked the bills to the mailbox located down the street.

For two days I searched for that pile of bills. I contacted each company and arranged for payments over the phone and paid each one. I had zero recollection of paying the bills the two short days previously. It wasn't until the businesses contacted me one-by-one that I realized I must've forgotten the entire process.

My husband and I took a week long trip to White River, Arkansas. I lost everything I touched. Keys to the RV, our camera, my cell phone. My sanity. From those times and through the years that followed, “normal cognition” no longer seemed to apply!

I'd be lucky to remember my birthday, not to mention anything less meaningful. I was swimming through mud each and every day. I was scared and shaken.

I began seeking help for depression after my husband came home to find me sitting in the dark on the cold slate of the bathroom floor, lightly banging my head on the full length mirror. I was lost and no one could find me or my 30 year old brain.


Link to trailer

A slew of diagnoses ensued - Depression, possible Bipolar 2, general anxiety disorder, Narcolepsy, ADHD, Fibromyalgia, and more. I was admitted to the ER under the stroke protocol and in less than a year, I suffered a series of seizures as well as catatonia.

The only task that I felt able to perform was powered by Google. I was on the computer around the clock researching global amnesia, and according to the information I found, my brain would begin to recall pertinent information again in due course and by itself.

But that never happened - I continued to deteriorate and suffer.

It wasn't until April 2013 that I received a big break. Although my brain was the first to go, my body had soon followed. The arthritis-like feeling in my neck, hips, and fingers had left me reeling in pain, with no explanation or relief.

A stranger to Pinterest, I was piddling around on Fibromyalgia forums in search of homeopathic bath soaks, when low and behold, I saw a notice for "Under Our Skin."

This is an award-winning feature-length documentary about Chronic Lyme Disease, and I immediately felt the remaining pieces of my puzzling decline were finally within reach.

Diagnosis and treatment...

The Symptoms of Chronic Lyme Disease - image supplied by author

Over the next 2 months, I diligently researched Chronic Lyme Disease and officially received my diagnosis on July 3, 2013.

I had been bitten by something in Arkansas 7 years prior. There was no EM (Erythema Migrans) or “Bull's Eye” rash that I can recall, and I never saw the tick that got a piece of my left hip.

Perhaps I never noticed, because a nymph tick is size of a poppy seed and can go undetected for days before it is discovered, or falls off of its own accord.

I was infected with Lyme Disease that had primarily attacked my brain and had then stealthily moved on to a host of other body systems and organs.

Currently, I am forced to travel out-of-state for treatment. It is a painful but, I feel, necessary, 8 hour drive every 4-6 weeks.

I need a PICC Line (Peripherally Inserted Central Catheter) and IV treatment because I suffer from Neuro Lyme or Neuroborreliosis caused by Bb (Borrelia Burgdorferi) bacteria.

A catheter is inserted into the superior vena cava and antibiotics are administered through a port above the heart. My physician is leery of PICC because there is not a physician in my home state of Texas willing to cooperate and help keep the PICC clear of infection and complications.


My medications

I have been on a treatment protocol for 9 weeks and have been forced to take an extended leave of absence from work, where I am now at risk of losing my beloved position as an Adapted Physical Education teacher.

I am on 25 pills each day, and 4 of them are high dose antibiotics, together with 1 anti-malarial medication for one of my co-infections, Babesia, and I give myself self-administered injections 2 times a week.

Treatment has certainly been no cakewalk either!

The reaction from the medications coupled with the debilitating Lyme symptoms leave me bedridden most days. Unable to work or care for my children, unable to leave the house or see the sunshine.

I am expected to make a recovery, but I am facing 3-5 years of treatment. The antibiotic route is the best for me at this time because I have been infected with Lyme and Babesia for 7 years and Bartonella for 27 years from Cat Scratch Fever at 8 years old that wasn't properly treated.

It is a long and bumpy road, but despite it all, I do feel I am one of the lucky few. I have answers. I have direction. I have support. It wasn't always the case, but I encourage each of you to be your own advocate when doors slam in your face and your standard labs come back normal.

I had contacted the specialty lab, Igenex, in Palo Alto, CA. I convinced a physician at a local walk-in clinic to sign the orders. I received the results directly 4-6 weeks prior to getting in to see my LLMD (Lyme Literate Medical Doctor).

My relentless Google powered efforts are paying off. So keep up the fight. You are worth it and no one need fight alone.



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Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers...why oes this have to be so damn hard to get help.
 
Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers...why oes this have to be so damn hard to get help.
Ugh. So sorry. Been there (not with lyme, but similar situation).
 
Well got call today from nurse, my pcp said no to consulting with a Lyme doctor to verify my results. Also said would not treat me for Lyme no matter waht doctor said since it is so controversial. But did acknowledge it was still possible that I had chronic Lyme. Feeling so much in limbo, very frustrated and down. Just want answers...why oes this have to be so damn hard to get help.

Why not go to a Lyme specialist on your own rather than the consulting route?

Sushi
 
Why not go to a Lyme specialist on your own rather than the consulting route?

Sushi
@Sushi I am trying to get into an LLMD in another state (the one closest to me) but they are currently backlogged and could not promise they could get me in until maybe February.

I then asked if the doctor would be willing to consult with my doctor and at least give me confidence in her Negative for Lyme diagnosis based on discussing the test results and my history. I was told yes she would be willing to consult. That is when I sent letter to my doc and asked her to do the consult. So for now I am in limbo until I can get in to see LLMD. Will call next week to see if I can send copies of my tests and short history (not sure how to make 8 years short) to the LLMD and see if she will give me some idea.

I am on the LLMDs contact list when they have an opening.
 
Just where I am right now too...(((hugs)))!!!

Keep pushing! Doors will continue to slam, but it's worth the fight to have answers and direction so healing can begin ASAP!! You all can always contact Igenex Labs, get a test kit mailed directly to you.

You must find a physician to sign the orders and will need to pay in advance, but Igenex will give you CPT Codes to file with your insurance for reimbursement. The results will go directly to your doctor and you can obtain them from them, but at least that part is covered when you finally get in to your LLMD and that's one less step in the waiting game.

Results come back in 14-16 days. You will need to order test 6050 and CD57. Many of the coinfections can be dxed with clinical checklists. It is the most amazing feelings to finally have answers and direction. Knowing is half the battle!!

Also, walk in labs, like Any Lab Now will draw the blood as long as you have the lab kit and they will be shipped free of charge overnight. There is a $40 drawing fee, but when the results come to them, they may be willing to forward the results directly to you and wa-lah! Confirmation!!

The CD57 to 6050 will run you $450-550, but in my case that was a drop in the bucket compared to the thousands I've shelled out with no diagnosis! It's worth it if you believe you have been infected. No one, no region, no state is immune!! Best of luck! I'm here to help!!
 
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Ok.....haven't really been following closely---would sure like to know what Dr shoemaker offers. I was exposed to mold 3 years ago not sure if still being exposed...is it possible that the affects linger? Am I crashing this thread w this question? Also I had blood flow Cytometery done CD4 etc and some were a little high, but no interlinked tests......I really need to talk to someone about this!!!
 
Ok.....haven't really been following closely---would sure like to know what Dr shoemaker offers. I was exposed to mold 3 years ago not sure if still being exposed...is it possible that the affects linger? Am I crashing this thread w this question? Also I had blood flow Cytometery done CD4 etc and some were a little high, but no interlinked tests......I really need to talk to someone about this!!!
So far, what diagnosis have you received and what are your worst symptoms?
 
Thx, I did post my results here in another thread (I think it was the Lyme testing thread). Mine came back negative a few weeks ago but I had a few INDs which I have since learned should not be ignored especially if I have been sick with various symps for more than a year. I have been battling for about 8 years. So the theory as I understand it currently is I may not be producing enough antibodies for the bands to show up strong positive. You definitely lit up that IGenex test. Was that your first time testing with them? I did not do any of the co-infections tests.

My CD57 NK abs was 55.
My IFA was <40 and the PCRs were negative.
I was '+' on IgM 83/93 and IND for 31,34, 41 and I was IgG '+' for 41
(as a result from these tests above my pcp says I dont have Lyme just general immune suppresion)

Trying to decide on a Lyme doctor to see. The couple I am looking at have backlogs and are not seeing new patients for 4-6 months. One did agree to consult with my pcp and review my CDC and IGenex results which I thought was nice. I am just wanting a more definitive diagnosis if possible, like a test that confirms before putting myself thru more drugs and supplements.

Guess I am just jaded from so many years of not really making any progress.

I have actually become fearful of taking drugs and supplements since I have had so many reactions over the years.
I did testing with infectolab in Germany. I had two indeterminate results on igm and no igg. My cd57 was low also, was 57. Infectolab claim this suggests Neuro borrelia infection. I am not so sure. In my internet searches cd57 may also indicate not only Lyme but virus's and other things that they are still not sure of.

For the time being I don't feel my results or symptoms (though I am bedridden) scream Lyme and so, rightly or wrongly, am not pursuing treatment. Obviously, treating Lyme when you definitely have it can help enormously but I have also heard of people who have treated a possible Lyme diagnosis with long term abx and have been made worse. dr Jamie deckoff jones who writes an excellent blog and has been ill with ME for years used abx for many years and believe it made her worse. She writes about it on her blog x-rx. If you scroll down to the second blog post on this log she talks about her thoughts on Lyme http://www.x-rx.net/blog/2010/05. I

I do stress for some people, as Astrid's story illustrates, treating Lyme infection is incredibly beneficial and important but there do seem some people may treat when they don't have active Lyme. Also I think deckoff Jones suggests if you respond to abx at the start of the course of treatment this further shows treating Lyme is a good idea but it may not be a good idea to continue taking abx when you are having no response or a prolonged herx which she believes may not be a herx but a cytokine flare
 
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Thanks for writing about your experiences here and especially for alerting us to the film - I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC - some have had special measures imposed and are continually harassed by the medical authorities.

The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here - how can he be sure of that? How do we know the dog is even safe from the tick bites?

It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

all the best,
Justy.
Justy, I live in the UK and did Lyme tests privately through infectolab in Germany. You don't need a GP's referral but the tests aren't cheap. Unfortunately, my results were indeterminate so I am still not clear as to whether I have it or not and for the time being am not pursuing treatment.
 
May I ask did KDM test you for this and if so did he use infectolab? Thanks
Yes. I was negative by PCR and serology showed only band 41 for spirochettes. I then had an Infectolabs test which was a weak positive. KDM said it was positive - I hear that results are low if you have been sick a long time as you don't get much of an immune response. If treatment works then over time the result actually gets higher at first. I think Bartonella is more of a problem for me than Lyme though.
 
@anniekim

When you mentioned Infectolab, did you have the LTT test? It seems to be pretty accurate unless you have low lymphocytes. It is not an antibody test.

Best,
Sushi

Hi Sushi,

Yes, I did the LTT test which came out negative, which further made me lean to thinking I don't have an active infection, although I am not totally sure. I read somewhere the LTT has 75% sensitivity so don't know whether this is true. Infectolab said a negative LTT doesn't rule out Lyme but I I think it adds to the possibility of not having it with only two indeterminate igm antibodies,

Excuse my ignorance when you say low lymphocytes, is this referring to the cd57 test or something else? Thanks
 
Yes. I was negative by PCR and serology showed only band 41 for spirochettes. I then had an Infectolabs test which was a weak positive. KDM said it was positive - I hear that results are low if you have been sick a long time as you don't get much of an immune response. If treatment works then over time the result actually gets higher at first. I think Bartonella is more of a problem for me than Lyme though.
Thanks Snowathlete. When you say only a weak positive with infectolab do you mean just one indeterminate band or perhaps a few indeterminate? I hear you though that you think bartonella may be more your problem
 
Thanks for writing about your experiences here and especially for alerting us to the film - I just watched it this afternoon and it was very good. Here in the UK we have the same problem with any GP who treats CFS/M.E patients with real treatements being hauled up in front of the GMC - some have had special measures imposed and are continually harassed by the medical authorities.

The film was really pretty scary as here in the uk we don't even have any testing offered at all, and no LLD's that i'm aware of. It makes me woder if there is any point in faffing about the edges with diet, adrenals, supplements ect when it's very possible I could have some kind of tick borne vector.

I spent a lot of time hanging out in fields as a teenager on the fringes of London and camping out in the grass. Now we live in an area with a LOT of ticks, as my dog keeps coming in with them all the time. Over the summer we removed 35 in one sitting from his head and ears. Strangely though our vet says there is no LYme disease here - how can he be sure of that? How do we know the dog is even safe from the tick bites?

It's got me wondering about whether it's possible to get good testing here in the UK such as that done by KDM in Brussels.

all the best,
Justy.

Justy, I live in the uk and sent my blood to infectooab in Germany. You don't need a GP referral but not cheap unfortunately
 
Thanks Snowathlete. When you say only a weak positive with infectolab do you mean just one indeterminate band or perhaps a few indeterminate? I hear you though that you think bartonella may be more your problem

hi anniekim, The results of my Elispot LTT test were:
Borrelia burgd. Fully Antigen (+): 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA): 1
Borrelia LFA-1: 0
"The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for a
borderline/very weak actual cellular activity against Borrelia burgdorferi."


Best
Joel
 
hi anniekim, The results of my Elispot LTT test were:
Borrelia burgd. Fully Antigen (+): 2
Borrelia OSP-Mix (OSPA/OSPC/DbpA): 1
Borrelia LFA-1: 0
"The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for a
borderline/very weak actual cellular activity against Borrelia burgdorferi."


Best
Joel
Thanks Joel, I'm clear now that you did the LTT elispot test, not antibodies.

I did the LTT and came out negative, 1, 0, 0