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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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.

 

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.

Yes, Roxie60. I fully understand. Every medication I tried made me worse, but I know now that it's because they were all the wrong meds. Lyme feeds on Steroid treatment and we all know that steroids are shelled out for inflammatory disorders. I never once had any type of improvement with medications until now. I was treated for Fibro and Narcolepsy, but the decline was strong and steady.

Most PCPs, most doctors, won't bat an eye at your lab results. They either do not know how to interpret them and simply look at the "negative" result. There is clinical significance in any band being represented. It was my first time to test with Igenex and I had two prior Lyme Screens using the Elisa and IgG, considered negative bc of CDC guidelines. I had the co-infection panel done, but those are better dxed by a specialist using symptom checklists.

Do me a favor...
Visit this website and print out the PDF of the entire list of symptoms. Highlight or notate all the symptoms you've had over the years. This will speak loudly to use and whether or not it could still be Lyme's. Yes, the longer you are infected, the antibodies that are produced continue to change and evolve. Our bodies actually may stop making certain antibodies and concede to the disease.
Check it out: www.anapsid.org/cnd/diagnosis/mastersymptoms.html
Let me know how it goes!!

 

Astrid13:

Thanks so much for posting your story. My daughter has been so ill for the last 2 1/2 years. Finally tested positive for Lyme (IGM positive - IGG negative). CD57 of 4!!

She has just started antibiotics and I know it is going to be a long road ahead but at least I feel we are on the right track.

Good luck and hope you are feeling better soon.

Thank you, Pam123!
It is a long road for us all, but the hope that is cultivated in receiving a proper diagnosis and respective treatment is enlightening. I feel like I have a second lease on life, yet I'm 3.5-5 years from beating this bugger
I'm so glad that you have answers and direction. Knowing is more than half the battle!! Please keep me in the loop. I'd love to hear more!
Xoxo

 

Thanks for the great article. My problem is that everything I read makes me more confused. I had an igenex test last year, which I saw at the time as being negative, but now I'm not sure.

My cd57 was 51. IFA 40. On the Igg I was ind on 31 and ++ on 34. Igm was ind on 39 and + on 41.

I have been taking valcyte for very high hhv6, but my health hasn't really improved. There ar a couple good lyme doctors in my area, but they don't take insurance. I'm also concerned that some lyme doctors just see lyme everywhere. If I have lyme, I have had it for 15 years and have mostly been in good health until the past few years. Can this happen, do you know?

I don't want to be spending energy and money treating lyme I might not have and ignore something else because of it. Sometimes I think its very possible and other times I just don't. I'm not sure what to do a this point.

 

I realized that something in my above post could be read in a way I did not mean it to be. When i said lyme docs may see lyme everywhere, I don't mean to denegrate them. I thin it is probably true of any specialty that doctors may gravitate to diagnoses they are familiar with, whether it is infectious disease, psychiatry or anything else. Lyme specialists are no better or worse than others in this respect.

Ok, maybe they are better than psychiatrists.

 

I realized that something in my above post could be read in a way I did not mean it to be. When i said lyme docs may see lyme everywhere, I don't mean to denegrate them. I thin it is probably true of any specialty that doctors may gravitate to diagnoses they are familiar with, whether it is infectious disease, psychiatry or anything else. Lyme specialists are no better or worse than others in this respect.

Ok, maybe they are better than psychiatrists.

Hi Vamah!
Thanks for reading and replying It is all very confusing. I've been infected for 27 years, but was rather asymptomatic until 7 years ago. Yes, it is quite possible and a number of Chronic Lyme sufferers realize they have indeed had it most of their lives. By no means am I an expert, but my doctor who is one, suggests that 80-90% of autoimmune disorders are caused or triggered by bacteria, as in Lyme Disease. Also, some Lyme patients encounter full body retaliation and every single part of their bodies become infected and compromised, whereas others have Lyme attack one certain body system. I know a woman who wasn't sick otherwise, but was having a horrible problem with fluid behind her kneecap. Many procedures later, they finally tested it and it was positive for Lyme. No two people have the same symptoms and like I mentioned above, Lyme is known to mimic well over 300 other conditions including ALS, Alzheimer's, MS, Lupus, CFS, Fibro, Rhuematoid Arthritis, etc!!
One of the best things I could have ever done was use the comprehensive. list (PDF format) to recognize all the symptoms that I've experienced over the years. I encourage you to do the same and please share your findings!
Btw, I took no offense to your comment about LLMDs, there are plenty of docs that seem to get on bandwagons, I truly feel in my heart of hearts that more need to get on this one
http://www.anapsid.org/cnd/diagnosis/mastersymptoms.html

 

I have actually become fearful of taking drugs and supplements since I have had so many reactions over the years.

Roxie, I notice on your genetic profile at bottom that you have CYP2D6 listed. Are you aware that that can affect your response to 25% of pharma drugs out there http://en.wikipedia.org/wiki/CYP2D6. You may want to look closer at your gene results to have a better idea of what drugs are more likely to cause you issues so you know better which to avoid so you can make better trial choises. I have CYP2D6 +- myself (3x) and have found that nearly all my bad drug reactions have been to one of those drugs.

 

I did find nother nugget in the link you provided. Id Dr Mercola's opinion trustworthy...it seems I ws into reading some of his stuff but then started getting daily 'spam' from him so not sure where I stand on his opionions.
http://www.anapsid.org/lyme/index.html

Yes, Roxie60. I fully understand. Every medication I tried made me worse, but I know now that it's because they were all the wrong meds. Lyme feeds on Steroid treatment and we all know that steroids are shelled out for inflammatory disorders. I never once had any type of improvement with medications until now. I was treated for Fibro and Narcolepsy, but the decline was strong and steady.

Most PCPs, most doctors, won't bat an eye at your lab results. They either do not know how to interpret them and simply look at the "negative" result. There is clinical significance in any band being represented. It was my first time to test with Igenex and I had two prior Lyme Screens using the Elisa and IgG, considered negative bc of CDC guidelines. I had the co-infection panel done, but those are better dxed by a specialist using symptom checklists.

Do me a favor...
Visit this website and print out the PDF of the entire list of symptoms. Highlight or notate all the symptoms you've had over the years. This will speak loudly to use and whether or not it could still be Lyme's. Yes, the longer you are infected, the antibodies that are produced continue to change and evolve. Our bodies actually may stop making certain antibodies and concede to the disease.
Check it out: www.anapsid.org/cnd/diagnosis/mastersymptoms.html
Let me know how it goes!!

 

Roxie, I notice on your genetic profile at bottom that you have CYP2D6 listed. Are you aware that that can affect your response to 25% of pharma drugs out there http://en.wikipedia.org/wiki/CYP2D6. You may want to look closer at your gene results to have a better idea of what drugs are more likely to cause you issues so you know better which to avoid so you can make better trial choises. I have CYP2D6 +- myself (3x) and have found that nearly all my bad drug reactions have been to one of those drugs.

I know when I was doing a lot of genetic research trying to understand why I was sick all the time I did try to understand the impact of this gene. One I know for sure I cant take is Codeine...learned that one the hard way and way before I got chronically ill. Still need to review the list and be sure I'm not given certain anibiotics, need to go backwards and see if I can recall when I had bad reactions what I was given and see f they are on the list. Thx @taniaaust1

Not sure I understand the substraits and their impact depending on allele .... I for sure have trubs with the opioids, all of them in that list as soon as they are mentioned I just want to turn and run the other direction. There is a lot of SSRI on the list but still trying to be familiar enough with drugs to identify the antibiotics I might have probs with. Dont want to take antibiotics to treat Lyme beastie (if I have Lyme) and not be sure my negative reaction is due to Lyme beasties dying off or me reacting to the meds...I should have been a doctor, I think I would have saved money in the long run....it was however not my area of interest....now look at me...should have started back then since I have had to learn at least I'm assuming a couple of years worth of medical education

 

Roxie60,
I've actually not read a lot of Mercola's works. The master symptom list I found is also based on Burrascano's which I find to be a very trustworthy physician and professional. By no means am I suggesting that everyone with a mysterious chronic illness has Lymes or another tick-borne disease. I simply want everyone to consider every possible condition that could be responsible so the healing can begin and the suffering and pain be minimized That's it!!
It is no secret that Chronic Lyme disease is under diagnosed and extremely controversial. I left no stone unturned but it took my entire adult life thus far seeking, searching, and praying for answers.
The main purpose sharing my story and life is to help spread awareness and I hope to support and guide others

 

Roxie60,
I've actually not read a lot of Mercola's works. The master symptom list I found is also based on Burrascano's which I find to be a very trustworthy physician and professional. By no means am I suggesting that everyone with a mysterious chronic illness has Lymes or another tick-borne disease. I simply want everyone to consider every possible condition that could be responsible so the healing can begin and the suffering and pain be minimized That's it!!
It is no secret that Chronic Lyme disease is under diagnosed and extremely controversial. I left no stone unturned but it took my entire adult life thus far seeking, searching, and praying for answers.
The main purpose sharing my story and life is to help spread awareness and I hope to support and guide others

That is what most of us here try to do. I just really dont know where I stand on Mercola, much of what I have read of his seems plausible but then when it turns into a hard sell I start to get skeptical. This was by no means any refelction on you or your posts just me curious about what others thought of the integrity of Mercola. I also in just a short time of researching lyme have respect for Burrascano, seems a leader and one who cares for his patients and others suffering with Lyme or trying to determine if they have lyme and he sees the value of trying to educate doctors, the first line of defense and the place many sick people hit a wall unfortunately.

 

Right, you have Burrascano pegged as far as I'm concerned Extremely knowledgeable and he has dedicated the majority of his career to the topic of Lyme and educating other doctors. I really haven't relied on Mercola much to my recollection, so I want to look over the link you shared. Remind me on whether or not you've watched "Under Our Skin?"

From what I watched or read, this is by far the most informative, convincing and compelling argument that I've encountered. I've watched it numerous times and learn more every time.
I'm sure you have with all the time you've spent learning about about LD.
Are you more confused than ever? I'm so sorry, I know how exhausting the pursuit is!!

That is what most of us here try to do. I just really dont know where I stand on Mercola, much of what I have read of his seems plausible but then when it turns into a hard sell I start to get skeptical. This was by no means any refelction on you or your posts just me curious about what others thought of the integrity of Mercola. I also in just a short time of researching lyme have respect for Burrascano, seems a leader and one who cares for his patients and others suffering with Lyme or trying to determine if they have lyme and he sees the value of trying to educate doctors, the first line of defense and the place many sick people hit a wall unfortunately.

 

I am extremely limited with time and being able to function. This thread intrigued me since I attend a Lyme Symposium at Massachusetts General Hospital (MGH) , Boston, MA on November 9th.

Numerous Lyme researchers and physicians presented and it was a major coup given that Dr. Allen Steere heads up the Lyme program at MGH. Insurance companies have used guidelines authored by Dr. Steere to prevent patients from receiving long term antibiotics so many people have spent many thousands of dollars (10 - 100+) in some families due to persistent Lyme symptoms after the "standard" 28 days.

The doctor that coordinated the event suffered from Lyme Neuroborelliosis. She suffered the same dismissal from any physicians so it was an eye opener for her. She was a physician working for a top medical organization yet she was given the same treatment so many of us are. "It is all in your head".

She wrote a "Manifesto" to her colleagues because she felt if she, who was fortunate to have the medical education, two physicians that would help her without charging and a third that took insurance, could not have afforded the treatment and went through numerous physicians that could or would not help, what happens to everyone else?

Here is her "Manifesto": http://www.zubcevik.com/2013/05/20/lyme-disease-manifesto-for-my-dear-colleagues/

I wish I could write more.. Not doing well at all but look forward to finally making an appointment in Boston for help.

 

I reviewed the master symp list and highlighted ones I have or have had thru the years. always a moving target except for a few constant ones. really tired will try o elaborate later

 

I am extremely limited with time and being able to function. This thread intrigued me since I attend a Lyme Symposium at Massachusetts General Hospital (MGH) , Boston, MA on November 9th.

Numerous Lyme researchers and physicians presented and it was a major coup given that Dr. Allen Steere heads up the Lyme program at MGH. Insurance companies have used guidelines authored by Dr. Steere to prevent patients from receiving long term antibiotics so many people have spent many thousands of dollars (10 - 100+) in some families due to persistent Lyme symptoms after the "standard" 28 days.

The doctor that coordinated the event suffered from Lyme Neuroborelliosis. She suffered the same dismissal from any physicians so it was an eye opener for her. She was a physician working for a top medical organization yet she was given the same treatment so many of us are. "It is all in your head".

She wrote a "Manifesto" to her colleagues because she felt if she, who was fortunate to have the medical education, two physicians that would help her without charging and a third that took insurance, could not have afforded the treatment and went through numerous physicians that could or would not help, what happens to everyone else?

Here is her "Manifesto": http://www.zubcevik.com/2013/05/20/lyme-disease-manifesto-for-my-dear-colleagues/

I wish I could write more.. Not doing well at all but look forward to finally making an appointment in Boston for help.

Thank you!! I can't wait to read the manifesto and hooray!!! Sometimes it takes a physician getting sick or a politician, someone with more credibility than the rest of us that "don't look sick" and "it's all in our heads."
Please keep me posted, I'd love to hear about your voyage. Best of luck and take care!!
Xoxo

 

Anyone do the skin test for Lyme? How does that work?

The more I read about testing the more it looks like some of these tests might not be worth the added ex;pense. http://www.anapsid.org/lyme/teststudy.html

 

Anyone do the skin test for Lyme? How does that work?

The more I read about testing the more it looks like some of these tests might not be worth the added ex;pense. http://www.anapsid.org/lyme/teststudy.html

I've not done it, but there is some value in spinal fluid in some cases. After years of searching, for me, it was like the Heavens opened and the movie was literally dropped in my lap. From there, it was all super clear.

 

Just back from doc -in-the-box and another sinus infection. Tried to let my body overcome the infection but my counselor reminded me that I have had '0' recoveries from sinus infections over the past years so I gave in and went to doctor cause I'm tired of the added discomfort and cough.

I have been given Biaxin (generic. never had this one before). Doctor made and interesting comment that got my attention. He said mycoplasmas are primary cause of acute sinus infections. First time in all these decades of sinus infections that a doctor ever mentioned a cause. It only got my attention because of all the Lyme research I have been doing this past month. Isnt mycoplasma a known co-infection of Lyme (is this the reason for multiple recurring sinus infections for years??). He made it clear he was not diagnosing me with mycoplasma since it is hard to test for (<50% chance of positive). Just thought it interesting after all these years and now when I am just starting to learn and have now heard of mycoplasma.

Also warned aboout the diarhea as a side effect of Biaxin,,,, no biggey already have that going on-yippee.

 

Just back from doc -in-the-box and another sinus infection. Tried to let my body overcome the infection but my counselor reminded me that I have had '0' recoveries from sinus infections over the past years so I gave in and went to doctor cause I'm tired of the added discomfort and cough.

I have been given Biaxin (generic. never had this one before). Doctor made and interesting comment that got my attention. He said mycoplasmas are primary cause of acute sinus infections. First time in all these decades of sinus infections that a doctor ever mentioned a cause. It only got my attention because of all the Lyme research I have been doing this past month. Isnt mycoplasma a known co-infection of Lyme (is this the reason for multiple recurring sinus infections for years??). He made it clear he was not diagnosing me with mycoplasma since it is hard to test for (<50% chance of positive). Just thought it interesting after all these years and now when I am just starting to learn and have now heard of mycoplasma.

Also warned aboout the diarhea as a side effect of Biaxin,,,, no biggey already have that going on-yippee.

Yes, it is a known co-infection. Biaxin is readily used to treat Lyme. I wonder what kind of reaction you will have to it? What kind of reactions do you have to other abx that you aren't able to tolerate? I just wonder about the herx vs intolerance. The last visit to my LLMD 3 weeks ago, I took a long lost friend that has been terribly ill her entire life. She's had 14 miscarriages, an emergency C-section at 30 years old, more surgeries than she can count, and at one point was given a lethal dose of some medication just to save her life. She is so sick, she is freezing all the time, can't walk standing up straight, struggles with stairs, etc. She is 35 years old and mostly bedridden. Through Igenex, she not only tested positive, she tested CDC positive! We grew up about 5 miles apart. She is lucky to be and I'm so lucky to have reconnected with her. Point being, I know you want more confirmation before you proceed, but try your best to get in with a LLMD even if there's a substantial waiting period. They understand it best and can give you every bit of reassurance you need. I'm sorry you have a sinus infection I hope it clears up soon!!

 

Also warned aboout the diarhea as a side effect of Biaxin,,,, no biggey already have that going on-yippee.

So now your diarrhea has diarrhea!