• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Lyme on my mind

View the Post on the Blog

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.



Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.

There are many ways you can help Phoenix Rising to continue its work. If you feel able to offer your time and talent, we could really use some more authors, proof-readers, fundraisers, technicians etc. and we'd love to expand our Board of Directors. So, if you think you can help then please contact Mark through the Forum.

And don't forget: you can always support our efforts at no cost to yourself as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.


View the Post on the Blog
 
Last edited by a moderator:
Re sinus infections... I've had many and rarely feel completely healed. I think biofilms are really causing havoc in a lot of us. Years of prescription antibiotics haven't helped us either.

Step 3 in Dr. Ritchie Shoemaker's Protocol calls for the "eradication of multiply antibiotic resistant coagulase negative staphylococcus (MARCoNS) from the nasopharynx, if present. These bacteria form a biofilm making it hard for many antibiotics to penetrate, sheltering the bacteria. Further, as their name implies, they are resistant to at least two classes of antibiotics. MARCoNS rarely exist if a patient has a normal MSH (melanocyte stimulating hormone), but normal MSH is unusual in CIRS (Chronic Inflammatory Response Syndrome) patients. MARCoNS make hemolysins which cleaves MSH rendering it ineffective. Inadequate treatment of MARCoNS will render CSM therapy impotent, perhaps because of the continued assault on MSH. To treat MARCoNS, a combination of therapies is used. Rifampin, a powerful but rarely used oral antibiotic is a mainstay. It is able to penetrate the biofilm and get to the “bugs”. I use 300 mg, 2 tabs daily for 30 days for adults and 10-20 mg/kg/day for children. Also used, in combination with rifampin, is BEG spray, an acronym for Bactroban (mupirocin), EDTA and gentamicin. The EDTA dissolves the biofilm clearing the way for a direct attack by the topical antibiotics. Two sprays 2-3 times a day for 30 days usually do the trick. For children, I use 1 spray twice a day, alternating nares. Start the rifampin and BEG spray on the same day to discourage new resistance emergence."

Link to additional information is here: http://www.survivingmold.com/docs/McMahon_11_Step_Biotoxin_Elimination_Pathway_Essay.pdf
and here: http://www.betterhealthguy.com/physician-s-round-table-2012
 
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!

I am reading Dr. Richard Horowitz's book "Why Can't I Get Better" right now. In the book, Dr. Horowitz describes a very ill patient that had several miscarriages. They were able to find Borrellia burgdorferi in the placenta and fetus by PCR testing. After further aggressive treatment, the patient became pregnant again and was able to deliver a healthy newborn.
 
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!

I am reading Dr. Richard Horowitz's book "Why Can't I Get Better" right now. In the book, Dr. Horowitz describes a very ill patient that had several miscarriages. They were able to find Borrellia burgdorferi in the placenta and fetus by PCR testing. After further aggressive treatment, the patient became pregnant again and was able to deliver a healthy newborn.
Yes, I need to add that book to my reading list. Reading is quite a challenge though. Either the words jump off the page or the material doesn't stick to my infected brain. All in due time, I presume, right? Any other advice that stands out to you that we could all benefit from?
 
I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?
 
I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?
IMHO, Yes he is. There are several physicians that I follow and while they don't always prescribe the same treatment, they seem to acknowledge fundamentals. Dr. Ritchie Shoemaker of mold fame has significant documentation and treatment success. Others following other protocols also saw some success.

So many options, too little time for me to be able to evaluate. Hope I can do bettter in the future.
 
I read an excerpt of the Horowitz book and took the lyme likelyhoood test he has. I scored 76, which is well over the threshold for serious concern. Don't know much about him though. Is his work considered good among lyme literate docs?
Is there someway to post a copy or link to the Lyme likelihood test? That is interesting to me and although I've been confirmed through testing, I think this could still be valuable to me and especially to others that are on the fence about believing a clinical diagnosis or whether or not to shell out the money for speciality testing through igenex.
 
Re sinus infections... I've had many and rarely feel completely healed. I think biofilms are really causing havoc in a lot of us. Years of prescription antibiotics haven't helped us either.

Step 3 in Dr. Ritchie Shoemaker's Protocol calls for the "eradication of multiply antibiotic resistant coagulase negative staphylococcus (MARCoNS) from the nasopharynx, if present. These bacteria form a biofilm making it hard for many antibiotics to penetrate, sheltering the bacteria. Further, as their name implies, they are resistant to at least two classes of antibiotics. MARCoNS rarely exist if a patient has a normal MSH (melanocyte stimulating hormone), but normal MSH is unusual in CIRS (Chronic Inflammatory Response Syndrome) patients. MARCoNS make hemolysins which cleaves MSH rendering it ineffective. Inadequate treatment of MARCoNS will render CSM therapy impotent, perhaps because of the continued assault on MSH. To treat MARCoNS, a combination of therapies is used. Rifampin, a powerful but rarely used oral antibiotic is a mainstay. It is able to penetrate the biofilm and get to the “bugs”. I use 300 mg, 2 tabs daily for 30 days for adults and 10-20 mg/kg/day for children. Also used, in combination with rifampin, is BEG spray, an acronym for Bactroban (mupirocin), EDTA and gentamicin. The EDTA dissolves the biofilm clearing the way for a direct attack by the topical antibiotics. Two sprays 2-3 times a day for 30 days usually do the trick. For children, I use 1 spray twice a day, alternating nares. Start the rifampin and BEG spray on the same day to discourage new resistance emergence."

Link to additional information is here: http://www.survivingmold.com/docs/McMahon_11_Step_Biotoxin_Elimination_Pathway_Essay.pdf
and here: http://www.betterhealthguy.com/physician-s-round-table-2012
It took me this many days and re-reading your post to remember that my doc did a culture sample from my nostrils. I was negative, which was good, but it just made me realize how specific testing should be and how much is overlooked. You are an inspiration for being so knowledgable and resourceful. Thank you, thank you!!
 
Is there someway to post a copy or link to the Lyme likelihood test? That is interesting to me and although I've been confirmed through testing, I think this could still be valuable to me and especially to others that are on the fence about believing a clinical diagnosis or whether or not to shell out the money for speciality testing through igenex.
I will try to remember where I found it and post the link
 
(Sorry this was so long and if your having a bad time right now and reading abilities are limited you can start with the 3rd paragraph.)

I was at Walmart recently and was browsing the magazine section. I always like to flip through the "Discover" magazine and this month it has a big article by a researcher that has argued with the CDC that Lyme is present all over the USA. The CDC took for years to relent to the fact it wasn't anywhere but the Northeast, which I know is BS. Although I do not have Lyme as far as I know, I have 2 friends that has had it and one of them almost died because of his primary care physician (PCP). He finally found a LLMD in North Carolina that treated for 2 to 3 years before he became 90% functional, but he still has to watch his diet very close or he will get mild crashes. He went through a couple of times where we thought he was mostly healed, but he would do something to cause a major setback. The last one he felt like he knew what to do and after a couple of weeks he was unable to get out of bed and his wife rushed him to see Dr. Jemsek (who now has a clinic in Washington, D.C. because the North Carolina Board of Physicians literally ran him out of the state.)

My friend ended up with a shunt in his arm that led all the way to his heart and went through 3 to 4 different antibiotics over a course of a month or two with the shunt and then orally for another 6 months or so. That was his last really bad spell. My other friend was having the same problem with PCP and the first friend I was discussing knew my other friend, but had no idea he had Lymes. I asked him the friend that had seen Dr. Jemsek, to call my other friend to refer him and it wasn't long and he was making significant progress, which he was not doing with PCP.

Back to the Discover magazine and it has a really good article about how the author of the article contracted Lymes while studying the tick population in the South for Lymes carriers. The CDC still denies that Lymes exist in the Southern and Southeastern United States. The author also references a book, but I do not remember the name of it. I believe the whole article can be purchased online in a pdf format. Here is the link to the article in Discover, but it is not the full article.

http://discovermagazine.com/2013/dec/14-southern-gothic

One thing that I thought was a good idea is that they have developed an interactive map so that anyone with Lymes can identify with great accuracy where they know or believe they contracted Lymes. It also allows you to give a brief description of how the disease progressed with them personally. This may also give the NIH and CDC to at least start to think that Lymes does exist in the Southern and South Eastern region of the United States. This map is not for just the United States and anyone in the world can put their information on this map as there are many from Europe already on there.
 
The map may come up just showing the USA, all you have to do is hit the '-' in upper left side a couple of times to see where people are reporting Lyme across the world.

BTW, there are three pages to this article, I missed that the first time I tried to read it.

Thank you so muchfor posting this. It is this kind of work that needs to get out there to help those with Lyme to be herad and helped. And it is recent. I still do not know if I have Lyme but I know the feeling of being dismissed for years having be dx with Fibro and CFIDS.

May those who are blind and in power start opening their eyes to see and their ears to hear. A lot of these researchers and doctors who have tried to keep Lyme pin holed are suffering from their own disease, arrogance and ego.

If I have Lyme I have tried to put a timeline in my mind and figure out when/where I might have got it. I have always been an outdoors gal so I could have got it anywhere (if I have it) but I particularly remember getting all kinds of bites when at DisneyWorld the first week of June in 2005. Florida was expereincing a drought (I would think it would be less likely to get bit during a drought and in Summer but I then remember my bites occured in the hotel bed and the room was very humid and less hot with the air on all the time, I dont recall getting bit while in the DW parks) and patrons were told they would not wash the sheets unless requested. I know we initially tried to b conscientious and go along with their conservation program. But I was waking up each morning with more and more red bites. I was told it was just bed bugs so not to worry thy would be healed soon. It took months to heal. Now I'm not saying this is for sure when and where I got Lyme (if I have it ;)) but things kinda went down hill health wise since then and more disabling each year.

I was also told frequently when seeking help from doctors in IL that you cant get Lyme in central IL, even in my non medical mind that made no sense to me (like the bugs just stop at the state line or they assumed I never left the state in this 21 century mobile society, talk about closed minded) but I still respected doctors opinions then so I believed them and did not push.
 
Last edited:
That article notes that almost every tick can be carrier of Lyme and yes it most definitely exist in IL. One thing that was interesting was that author was finding that in the different ticks they tested many had variants. Here is a quote from the author.

"Clark also tested his own blood, where he found traces of B. burgdorferi along with another distinct genospecies (a bacterial species separated by divergence of genes), Borrelia andersonii, usually found in rabbits."

I believe it goes on to say the many of the different tick species may be a carrier of B. burgdorferi and another variant specific to the tick species (might be wrong about this).

I might try to get that 60 page E-single called "Ticked - The battle over Lyme Disease in the South". There also seems to be an article noted - "Can a tick bite make you allergic to meat"

I need to be tested by a reputable lab as I went to a routine doctors visit and he found a nymph of some sort of species of tick that had attached right on top of my spine, but by the time he found it, the tick had died, so I have no way of knowing how long it had been attached to me. He went on about his business and didn't say anything about testing me and when I asked him about it, his response was it probably hasn't been on you long enough for the test to detect it and that it usually takes at least 2 weeks. Well, I didn't see him again for 6 months and I asked about it again and he decided to test me with the old CDC standard of "Elisa w/ Western Blot if positive". It was negative if course!

I hope you feel better soon and certainly hope you do not have Lymes, but if you do I hope you find out as soon as possible.
 
It is discouraging for all of us that we are not well and basic testing performed by our primary care doctors shows nothing. Even specialists are challenged. Most available testing for Lyme appears to be severely limited. This is my opinion after attending a Lyme Symposium at Massachusetts General Hospital November 9th.

Depending upon your predominant symptoms and course of illness (e.g. sudden onset/viral vs. gradual onset) we are sent to different specialists. These specialists have predetermined lenses through which they view/diagnosis most patients.

Unfortunately, we, like many other patients don't "fit" into predetermined little boxes. Doctors don't like admitting their limitations. For this reason, I'm grateful that the their are people like Dr. Judy Mikovits, Dr. Enlander, and Eric Schadt, PhD now working on ME/CFS.

While various governments apparently want nothing to do with chronic illnesses like ME/CFS/FM/GWI, private funding is apparently moving forward. Sad to see it but some seem to believe these illnesses won't effect them or their loved ones. This couldn't be farther from the truth. Pandora's box has been opened and it has been opened for quite some time.
 
Last edited:
(Sorry this was so long and if your having a bad time right now and reading abilities are limited you can start with the 3rd paragraph.)

I was at Walmart recently and was browsing the magazine section. I always like to flip through the "Discover" magazine and this month it has a big article by a researcher that has argued with the CDC that Lyme is present all over the USA. The CDC took for years to relent to the fact it wasn't anywhere but the Northeast, which I know is BS. Although I do not have Lyme as far as I know, I have 2 friends that has had it and one of them almost died because of his primary care physician (PCP). He finally found a LLMD in North Carolina that treated for 2 to 3 years before he became 90% functional, but he still has to watch his diet very close or he will get mild crashes. He went through a couple of times where we thought he was mostly healed, but he would do something to cause a major setback. The last one he felt like he knew what to do and after a couple of weeks he was unable to get out of bed and his wife rushed him to see Dr. Jemsek (who now has a clinic in Washington, D.C. because the North Carolina Board of Physicians literally ran him out of the state.)

My friend ended up with a shunt in his arm that led all the way to his heart and went through 3 to 4 different antibiotics over a course of a month or two with the shunt and then orally for another 6 months or so. That was his last really bad spell. My other friend was having the same problem with PCP and the first friend I was discussing knew my other friend, but had no idea he had Lymes. I asked him the friend that had seen Dr. Jemsek, to call my other friend to refer him and it wasn't long and he was making significant progress, which he was not doing with PCP.

Back to the Discover magazine and it has a really good article about how the author of the article contracted Lymes while studying the tick population in the South for Lymes carriers. The CDC still denies that Lymes exist in the Southern and Southeastern United States. The author also references a book, but I do not remember the name of it. I believe the whole article can be purchased online in a pdf format. Here is the link to the article in Discover, but it is not the full article.

http://discovermagazine.com/2013/dec/14-southern-gothic

One thing that I thought was a good idea is that they have developed an interactive map so that anyone with Lymes can identify with great accuracy where they know or believe they contracted Lymes. It also allows you to give a brief description of how the disease progressed with them personally. This may also give the NIH and CDC to at least start to think that Lymes does exist in the Southern and South Eastern region of the United States. This map is not for just the United States and anyone in the world can put their information on this map as there are many from Europe already on there.
Hello! Please post freely and never feel that you should apologize for sharing your thoughts, lengthy or brief :) I have just been a bit off the radar, but I am most grateful that you have read my entry and that you have information to share with us here. I intend on viewing the Discovery article. I'm afraid that we are just on the cusp on a huge revelation with Lyme's. I read something that said that Texas, where I live, has finally passed legislation for insurance companies to acknowledge and pay for chronic Lyme disease treatment so that is a huge feat for me and the South! The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets. I remember as a young girl watching my father remove blood engorged ticks from my dogs. I pray that word spreads far, wide, and deep to help uncover the Truth behind the fastest growing epidemic in the World! Please continue to post and share any further information that you encounter!
 
It is discouraging for all of us that we are not well and basic testing performed by our primary care doctors shows nothing. Even specialists are challenged. Most available testing for Lyme appears to be severely limited. This is my opinion after attending a Lyme Symposium at Massachusetts General Hospital November 9th.

Depending upon your predominant symptoms and course of illness (e.g. sudden onset/viral vs. gradual onset) we are sent to different specialists. These specialists have predetermined lenses through which they view/diagnosis most patients.

Unfortunately, we, like many other patients don't "fit" into predetermined little boxes. Doctors don't like admitting their limitations. For this reason, I'm grateful that the their are people like Dr. Judy Mikovits, Dr. Enlander, and Eric Schadt, PhD now working on ME/CFS.

While various governments apparently want nothing to do with chronic illnesses like ME/CFS/FM/GWI, private funding is apparently moving forward. Sad to see it but some seem to believe these illnesses won't effect them or their loved ones. This couldn't be farther from the truth. Pandora's box has been opened and it has been opened for quite some time.
Amen! You are so corrected! It's just the tip of the iceberg!
 
The map may come up just showing the USA, all you have to do is hit the '-' in upper left side a couple of times to see where people are reporting Lyme across the world.

BTW, there are three pages to this article, I missed that the first time I tried to read it.

Thank you so muchfor posting this. It is this kind of work that needs to get out there to help those with Lyme to be herad and helped. And it is recent. I still do not know if I have Lyme but I know the feeling of being dismissed for years having be dx with Fibro and CFIDS.

May those who are blind and in power start opening their eyes to see and their ears to hear. A lot of these researchers and doctors who have tried to keep Lyme pin holed are suffering from their own disease, arrogance and ego.

If I have Lyme I have tried to put a timeline in my mind and figure out when/where I might have got it. I have always been an outdoors gal so I could have got it anywhere (if I have it) but I particularly remember getting all kinds of bites when at DisneyWorld the first week of June in 2005. Florida was expereincing a drought (I would think it would be less likely to get bit during a drought and in Summer but I then remember my bites occured in the hotel bed and the room was very humid and less hot with the air on all the time, I dont recall getting bit while in the DW parks) and patrons were told they would not wash the sheets unless requested. I know we initially tried to b conscientious and go along with their conservation program. But I was waking up each morning with more and more red bites. I was told it was just bed bugs so not to worry thy would be healed soon. It took months to heal. Now I'm not saying this is for sure when and where I got Lyme (if I have it ;)) but things kinda went down hill health wise since then and more disabling each year.

I was also told frequently when seeking help from doctors in IL that you cant get Lyme in central IL, even in my non medical mind that made no sense to me (like the bugs just stop at the state line or they assumed I never left the state in this 21 century mobile society, talk about closed minded) but I still respected doctors opinions then so I believed them and did not push.
Hey there!
I know you ave tried to backtrack to if you contracted Lyme, when you contracted Lyme, but my research has led me to believe that we can carry Lyme for a long time and it is in a less active, dormant phase. Given some life event, childbirth, surgery, increased stress, our bodies are working hard to recover and kinda catapults lyme into full force. Can you think of a time that you body may have been mor susceptible and given Lyme the green light to spread, attack and create more havoc? Think about that also.

Bed bugs shouldn't be taken lightly. I know you suspect they might be the culprit, but as August 59 mentioned, these bacterias are being found in a variety of different species.

I hope you find answers soon, so that you can transition to recovery phase :(
Sending lots of positive vibes your way!
 
The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets.
I lived in rural southern Oklahoma (less than an hour from the Texas border), and it was heavily wooded and covered in ticks. I had dozens of bites during the two years I lived there, as did the dogs and everyone else. I even stepped in a nest outside our trailer once and had dozens of the little buggers crawling up each leg :alien: It was like that everywhere out there.
 
The other states were all I'm the Northeast Region, where we all know the CDC believes to be endemic vs anything in the South because a researcher stated that Texas is not heavily wooded and consists of more "open land." Really, have you ever been to Texas? It is covered in dense, old trees, plenty of heavily wooded areas and ticks can be found year round on our pets.
I lived in rural southern Oklahoma (less than an hour from the Texas border), and it was heavily wooded and covered in ticks. I had dozens of bites during the two years I lived there, as did the dogs and everyone else. I even stepped in a nest outside our trailer once and had dozens of the little buggers crawling up each leg :alien: It was like that everywhere out there.
Have you ever been tested for Lymes?
 
Have you ever been tested for Lymes?
A Western Blot from LabCorp came back completely negative on all bands, but then again they also said my ESR was normal, which hasn't been the case in the past 3 years from several different hospitals and clinics (including one that was done a week earlier).

More extensive testing was done by Dr de Meirleir a month ago, but I haven't gotten the results yet. Though rumor has it that I could email one of the labs for some results already.
 
A Western Blot from LabCorp came back completely negative on all bands, but then again they also said my ESR was normal, which hasn't been the case in the past 3 years from several different hospitals and clinics (including one that was done a week earlier).

More extensive testing was done by Dr de Meirleir a month ago, but I haven't gotten the results yet. Though rumor has it that I could email one of the labs for some results already.

Infectolab will send the results to you by email--at least they did for me--and overnight!

Sushi