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Has Anyone Considered They Might Have Chronic Lyme Disease Causing Their Pots Or Dysautonomia ?


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#1 Guest_GaryRN_*

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Posted 29 March 2009 - 05:26 PM

Hi everyone, I am new here and my name is Gary. I've been an RN x 16 years. My story is long, but all of my symptoms started about 2 years ago when I developed free floating anxiety. This all started when I learned my brother was ill with Terminal Lung Cancer. He lived 18 months after the diagnosis, but my anxiety problem didn't start until after he passed away.

I entered a deep depression when he passed away, but I think it was nothing but normal. Even so, the anxiety I was having seemed to override the depression, which never made sense to me.

I tried many SSRI's, Antidepressants, and Mood Stablizers, etc., but everything just me go awful sick. I must have tried about 26 different meds in the course of a year before I said enough is enough. The depression of losing my brother slowly lifted at about the year mark, although I do miss him dearly and occasionally cry during certain times, but again, this is normal stuff now.

So after about a year into all of this, I started developing sever shortness of breath, which would come on out of nowhere while seated. The attacks would last for 3 hours or more. This sent me to the ER about 12 times last year. Very soon after I started getting all of this, Tachycardia would be my next symptom. Of course every ER visit was labeled Panic Attack, or GAD (Generalized Anxiety Disorder), but I insisted on many occasions in the ER that I didn't feel anxious at all. They would even give me IV ativan, but I would just get sleepy, but the shortness of breath and tachycardia would continue.

On one visit, someone decided to try and give me some IV Benadryl, amazingly, the breathing attack ceased and the Tachycardia did as well. So, I started carrying around liquid benadryl with me wherever I went, and it worked for a long time until recently. Not sure what happened but I now have POTS, just diagnosed about a week ago.

I don't know that my POTS is like yours, but I have severe weakness in my legs and I'm so fatigued sometimes that I can barely keep my eyes open, yet at these times, my anxiety can be brewing. I do have the common tachycardia upon standing and I do get very short of breath with any movement while standing. My BP always remains stable during these episode, although when I had my tilt table test, the Isuprel did make me pass out, which I have never done before. The other symptoms I walk around with are mostly in line with what you will see in the checklist at the end of this thread. The funny thing with my POTS is that once in a while I get a break from it for a single day or even two. When this happens, I go out of my house and run all sorts of errands and take advantage of the time, as when my POTS is in full swing, I also have a sensation of malaise.

I started treatment for Lyme disease as I have many other strange symptoms that are in line with chronic Lyme disease. Some of these symptoms are improving and other symptoms are new, such as the POTS. The board I post on is called lymenet.org . I had some real expensive testing done that confirmed the Lyme, and my Lyme Dr. says that POTS and other forms of Dysautonomia fall secondary to Lyme.

There is a huge debate about chronic Lyme disease. Your regular PCP, or Infectious Disease Dr. will say there is no such thing, but there are thousands and thousands with the same symptoms as I have. Your really have to read up on Lyme as it's not juts the aches and pains your use to hearing about, as the initial infection did present this way, but now, the disease is transmitted by not only Ticks, but also sand flies and mosquitoes. The Dr.'s that treat and go to battle for the disease are called LLMD's and are affiliated with ILADS (International Lyme and Associated Diseases). I will put a check list here that are in line with the 2 major co-infections that are associated with chronic Lyme disease. See if you can check off any in the list. If you can, there is a good chance your POTS could be secondary to Lyme. I'm not here to say that everyone with POTS has Lyme, but in my case and many others on lymenet.org, it does appear to be secondary to us.

I also want to let those that are interested know about some youtube videos I did make while I was suffering in the beginning. I'm very big into research as an RN and I have many videos on anxiety, depression, and bipolar, etc. You can find them at http://youtube.com/gary1rn .My newest videos on Lyme can be found at http://youtube.com/lymenurse .I recently started a registry to track the cases of chronic Lyme and it is at http://ldnr.org Lastly, I have also started a Lyme support group at http://lymechatnetwork.ning.com

I didn't come here to suggest that you all have Lyme. I really want to stress this as a new comer. I was actually trying to see if there are any POTS chat room around. Please let me know if there is a big one around just for chatting as I do have many questions about this disorder. Here is the checklist I promised:

BARTONELLOSIS

Common symptoms of bartonellosis include:

___Fatigue (often with agitation, unlike Lyme disease, which is more exhaustion)

___Low grade fevers, especially morning and/or late afternoon, often associated with feelings of "coming down with the flu or a virus"

___Sweats, often morning or late afternoon (sometimes at night) - often described as "thick" or "sticky" in nature

___Headaches, especially frontal (often confused with sinus) or on top of head

___Eye symptoms including episodes of blurred vision, red eyes, dry eyes

___Ringing in the ears (tinnitus) and sometimes hearing problems (decreased or even increased sensitivity - so-called hyperacusis)

___Sore throats (recurring)

___Swollen glands, especially neck and under arms (SOMETIMES)

___Anxiety and worry attacks; others perceive as "very anxious"

___Episodes of confusion and disorientation that are usually transient (and very scary); often can be seizure-like in nature

___Poor sleep (especially difficulty falling asleep); poor sleep quality

___Joint pain and stiffness (often both Left and Right sides as opposed to Lyme which is often on one side only with pain and stiffness that changes locations)

___Muscle pains especially the calves; may be twitching and cramping also

___Foot pain, more in the morning involving the heels or soles of the feet (sometimes misdiagnosed as plantar fasciitis)

___Nerve irritation symptoms which can be described as burning, vibrating, numb, shooting, etc.

___Tremors and/or muscle twitching

___Heart palpitations and strange chest pains

___Episodes of breathlessness

___Strange rashes recurring on the body often, red stretch marks, and peculiar tender lumps and nodules along the sides of the legs or arms, spider veins

___Gastrointestinal symptoms, abdominal pain and acid reflux (keep in mind i took my gallbladder out 3 months back)

___Shin bone pain and tenderness

Bartonella is a bacterium that causes illness, the most commonly known of which is a disease called "Cat Scratch Fever." Thousands of known cases of Bartonella occur in the U.S. each Year, with the vast majority of known cases due to bites from fleas that infest cats or infected dogs (may also occur directly from bites and scratches from infected dogs or cats). Bartonella can also be transmitted by ticks that transmit Lyme Disease. In fact, in a study published recently, deer ticks from New Jersey had a higher prevalence of Bartonella organisms than of Lyme organisms.

It is unclear whether the organism that we see transmitted along with Lyme disease is actually a Bartonella species (such as B. henselae or B. quintana) or is "Bartonella-Like Organism" (BLO) that is yet to be fully identified. While BLO has features similar to organisms in the Bartonella family, it also has features slimiar to the Mycoplasma and the Francisella (causes tularemia) families.

_________________


BABESIOSIS

As with other co-infections, there is a lot of overlap of symptoms between Lyme disease and Babesiosis. An accumulation of the following signs and symptoms probably warrant testing and/or treatment of Babesiosis:

___Chills

___Fatigue and often excessive sleepiness

___High fever at onset of illness

___Night sweats that are often drenching and profuse

___Severe muscle pains, especially the large muscles of the legs (quads, buttocks, etc.)

___Neurological symptoms often described as "dizzy, tipsy, and spaciness," similar to a sensation of "floating" or "walking off the top of a mountain onto a cloud"

___Depression

___Episodes of breathlessness, "air hunger", and/or cough

___Decreased appetite and/or nausea

___Spleen and/or liver enlargement

___Abnormal labs (low white blood count, low platelet counts, mild elevation of liver enzymes, and elevated sed rate)

___Headaches (migraine-like, persistent, and especially involving the back of the head and upper neck areas)

___Joint pain (more common with Lyme and Bartonella)

___anxiety/panic (more common with Bartonella)

___Lymph gland swelling (more common with Bartonella and Lyme) (my neck seems swollen but i did test for my lymph and it seems to be fine, but the size of it is not right)



Well, I guess this alot for my first ever post here, so hello everyone. Again, I'm Gary... 40 years old living in MD. Catch you all later.

#2 all4family

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Posted 29 March 2009 - 06:35 PM

Hi,

I have actually seen your videos on you-tube, and it was a consideration of mine. I was bitten by mosquitos 2 weeks before I became ill. And I get the fatigue thing. I fell asleep in a plate of sour cream yesterday! Thank you for sharing this with us. I may look into it.

Suzy

#3 mdcountrygirl

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Posted 29 March 2009 - 06:47 PM

Hi Gary,
Welcome to the forum. I am also new on here and also live in MD (in the country of western MD). (Hence Mdcountrygirl) What part of MD are you in?

Thanks for the interesting information on Lyme Disease. I haven't been tested for it but several people have told me I should get the testing.

I have panic attacks that I have always said are caused by something physical and not mental. The drs used to always dx me with PA when my HR was up and I was having trouble breathing. Now I know that POTS is the culprit.

I also have days where I feel relatively normal and I do as much catching up on those days that I can. Then I have days where I can't even get out of bed. I am helped by Benadry and found that out by accident as I took it before a CT scan and realized I felt better.

I just returned from testing at Cleveland Clinic. I am hoping to get some good answers when I get the full report.

Good luck with your treatment. Let me if you start on any POTS research as I would be very interested in participating.

Babette

#4 Mack's Mom

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Posted 29 March 2009 - 07:06 PM

Hi Gary,

Welcome. Through my years on this site and other similar ones, I have definately heard of Lyme Disease as the cause of autonomic issues, etc. Are you getting relief from your treatment? Some seem to improve; others don't after years of treatment.

Your symptoms are very suggestive of another disorder, Mast Cell Activation Disorder or MCAD. Search on this site to learn more about it. Also check out The Mastocytosis Society Website www.tmsforacure.org The site is under construction. To get to a list of MCAD symptoms click on the word "here" in the 3rd paragraph in the blue rectangle on the left side. Once on the old site, there are a list of options in lavender on the left, click onto Mastocytosis and Mast Cell Activation Syndrome.

Let me know what you think. The fact that benadryl stopped your symptoms is HUGE. Before i was DXed, I actually used an epi-pen to stop mine and it worked!!


All the best-

Julie

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Posted 29 March 2009 - 07:18 PM

Hey thanks you guys for the Warm welcome. I wanted to know if there is a POTS chat room anywhere that you know of. If so, could you post the link.

Also, the two of you that responded to this thread already should really look into what I'm talking about. Babette, you sound like classic Lyme.

I too get those days where I go out and do everything I can only to have the fatigue and every other symptom return the next day. I am treating very aggressively so alot of my symptoms are from the Herxheimer reaction.

At this point, I don't feel the need to do any research on POTS. Everywhere I read, I keep seeing this talk about people getting this condition after a viral or bacterial condition. This further suggests Lyme to me. They even go so far to talk about someone who has been through a trauma. This makes sense to me as well, as when my brother passed away, the trauma of his death, more than likely lowered my immune system and allowed this Lyme infection out like there was no tomorrow. It just makes sense to me.

Ask yourselves, if you were sick previously or had a major life event just prior to getting your POTS. If the answer is yes and you can answer yes to many on the checklist I put in the first post, I would look into Lyme.



Here is the Wilkapedia cause:

The causes of POTS are not fully known. Most patients develop symptoms in their teenage years during a period of rapid growth and see gradual improvement into their mid-twenties. Others develop POTS after a viral or bacterial infection such as mononucleosis or pneumonia. Some patients develop symptoms after experiencing some sort of trauma such as a car accident or injury. Women can also develop POTS during or after pregnancy. These patients generally have a poorer prognosis.



In one large test, 12.5% of 152 patients with POTS reported a family history of orthostatic intolerance, suggesting that there is a genetic inheritance associated with POTS. [7]

So far no one has provided an explanation for POTS which is applicable to all sufferers, however there are many theories;

Alpha-receptor dysfunction may be occurring in some POTS patients[8]. Alpha-1 receptors cause peripheral vasoconstriction when stimulated. Alpha-1 receptor supersensitivity may be causing dysautonomia in some patients[9].

Beta-receptor supersensitivity may occur with hyperadrenergic states in some people with POTS[10].

Hyperdopaminergic states may be the underlying problem for some people with orthostatic intolerance. Some patients have been found to have a significant increase in upright dopamine levels[11]. Free plasma norepinephrine also tends to be higher in these patients.

Reduced venous return is one of the main mechanisms that causes POTS symptoms. Venous return can be reduced due to conditions such as low plasma volume (hypovolemia), venous pooling and denervation. A hyperadrenergic state may result as the body attempts to compensate for these abnormalities.

Sympathetic Overactivity is observed in many POTS patients. The sympathetic overactivity can be secondary to a number of factors, some of which may be peripheral denervation, venous pooling, or end-organ dysfunction. Sympathetic underactivty can also occur in some forms of orthostatic intolerance[12], such as pure autonomic failure.


#6 Guest_GaryRN_*

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Posted 29 March 2009 - 07:36 PM

Hi Gary,

Welcome. Through my years on this site and other similar ones, I have definately heard of Lyme Disease as the cause of autonomic issues, etc. Are you getting relief from your treatment? Some seem to improve; others don't after years of treatment.

Your symptoms are very suggestive of another disorder, Mast Cell Activation Disorder or MCAD. Search on this site to learn more about it. Also check out The Mastocytosis Society Website www.tmsforacure.org The site is under construction. To get to a list of MCAD symptoms click on the word "here" in the 3rd paragraph in the blue rectangle on the left side. Once on the old site, there are a list of options in lavender on the left, click onto Mastocytosis and Mast Cell Activation Syndrome.

Let me know what you think. The fact that benadryl stopped your symptoms is HUGE. Before i was DXed, I actually used an epi-pen to stop mine and it worked!!


All the best-

Julie

I did look up the MCAD disorders, but I don't see anxiety in there, which has always been one of my biggest problems along with many others, but why didn't this stuff ever bother me when I worked in ICU's and ER's for 14 years, where the biggest stress job you can have is ? For years, I have pumped on people chests and saved lives, while I watched others die. Why wasn't I anxious all of this time ? It just doesn't make sense. Some of the MCAD symptoms overlap with Lyme, but I have to lean towards Lyme still as I have just about every symptom of Babesia and Bartonella, the 2 most common co-infections with chronic Lyme disease. My POTS wasn't always POTS, it started with anxiety, then shortness of breath without tachycarida, then s.o.b. with tacycardia, then with position changes. So, baby steps got it to be POTS in my case, or at least thats the best I can remember it.

As I sit here and type, I did have anxiety earlier in the day, and I just grinned and beared it, but I didn't take any benadryl or any Xanax, etc. and I don't have it at the moment. The organism Bartonella is very well known for causing anxiety in it's hosts.

I do appreciate the information on MCAD though, as I have never seen this diagnosis before. I tell you, there is so much disease out there today, it's gotta make you wonder what is going on with our world.

Gary

#7 valliali

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Posted 29 March 2009 - 09:09 PM

hi gary,
my symptoms began just like yours did. although i also had severe facial flushing in the mix. my first symptom was panic attacks, which were severe and numerous throughout the day. i had never had anxiety, let alone a panic attack, a day before in my life, and then it was like WHAM! sudden panic attacks all the time. i also began turning beet red, which again, NEVER happened ever. then began the shortness of breath. i felt like i couldn't ever get in a full breath, and i began to experience squeezing sensations in my chest. this was 24/7, not just with panic attacks. even when i was sleeping. then began the tachycardia. i was a hard core athlete who suddenly couldn't walk without my heart beating out of its chest. then came arthritis in my fingers, which went away just as suddenly as it came after about two months, and well, the rest is history. i developed heart arrythmias, vision problems, swollen lymph nodes coming and going like everyday, extreme fatigue, GI issues, and so on and so on and so on. but, i can definitely relate to your onset, mine was exactly the same.

all my symptoms began two weeks after i returned from living in africa. i went from insanely healthy, hadn't had even a cold in probably four years, to debilitatingly ill. i was only 23.
this has been going on for two years, and i have a team of docs at a major university hospital who all keep talking about this infection or virus i had that caused all this, but no one knows what that was.
i decided to get the igenex testing for lyme's done, which came back indeterminate. i plan to see a llmd, but i am very skeptical. i do not doubt for a second that lyme's exists, but i think i hear about twice as money stories of people on antibiotics for years with no significant improvement than i hear stories of people who get better. i tend to think lyme's is overdiagnosed, or it is true that it causes a chronic immune reaction, like chronic fatigue, rather than an active bacterial infection. however, though i am skeptical, i am willing to believe and do anything to get better so i am open minded to the possibility. i just don't want some fringe doctor to tell me i have lyme's so that he can suck me dry financially while telling me something i want to hear....

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Posted 29 March 2009 - 09:45 PM

Valliali, I hear you about getting sucked bone dry. In fact, if you were tested and it was indeterminate, than according to Dr. James Schaller, as I have spoken to him personally, and I have a professional relationship with him, he states that indeterminate is in fact, a positive finding. Depending on which band were talking about 39 is Lyme specific. Even 41 could be pos. when it is indeterminate.

With that said, rather than getting sucked bone dry, follow the salt C protocol, as it does work, and if you experience a Herxheimer reaction by day 3 or 4, which most do, than to me that is proof in the pudding.

Send me a PM with your email and I'll send you the salt/C protocol. I have also made a 3 part video series on it at http://www.youtube.com/lymenurse Go there and you will see me Lyme tachycardia caught on my blood pressure cuff and also a video of what came out of me from doing Salt/C.

The salt you get is Sea Salt from Vitamin Shop, and the C is Esther C with Bioflavenoids, also from Vitamin Shop. Make sure you get the Non-Acidic and follow the protocol exactly. A month supply is like $25, so not much of an investment all things considered.

I do not proclaim to be an expert on any of this stuff, but if you take a step back and look at the big picture, I think it is safe to assume you picked up some sort of infection on your trip, one that either the body doesn't recognize as foreign or one that the body simply can't fight off. I would guess the first, or your white count would be elevated and you would be fighting fevers, etc.

Somehow, I believe the immune system is compromised with this infection and for whatever reason, it just doesn't kill off the disease, which I truly believe is Bacterial in nature as opposed to viral.

Watch those videos I made on Salt C and let me know what you think. Go to my support site and look at my die off photos. Just search the blogs for die off. Personally, I am using Salt/C and Rife. I can tell you more about Rife later, but I Herx like crazy from Rife using it on Lyme frequencies.

BTW, I'm not a big fan of Antibiotics. From what I've seen, most with this condition don't respond to abx in the long term. Not all, but most. The reason suggested is that the abx send the organism into Cyst form, where the abx can't even get to the organism. This does not hold true with either Salt/C or Rife.

TC,

Gary

#9 Mack's Mom

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Posted 30 March 2009 - 07:03 AM

Julie[/quote]
I did look up the MCAD disorders, but I don't see anxiety in there, which has always been one of my biggest problems along with many others, but why didn't this stuff ever bother me when I worked in ICU's and ER's for 14 years, where the biggest stress job you can have is ? For years, I have pumped on people chests and saved lives, while I watched others die. Why wasn't I anxious all of this time ? It just doesn't make sense. Some of the MCAD symptoms overlap with Lyme, but I have to lean towards Lyme still as I have just about every symptom of Babesia and Bartonella, the 2 most common co-infections with chronic Lyme disease. My POTS wasn't always POTS, it started with anxiety, then shortness of breath without tachycarida, then s.o.b. with tacycardia, then with position changes. So, baby steps got it to be POTS in my case, or at least thats the best I can remember it.

As I sit here and type, I did have anxiety earlier in the day, and I just grinned and beared it, but I didn't take any benadryl or any Xanax, etc. and I don't have it at the moment. The organism Bartonella is very well known for causing anxiety in it's hosts.

I do appreciate the information on MCAD though, as I have never seen this diagnosis before. I tell you, there is so much disease out there today, it's gotta make you wonder what is going on with our world.

Gary
[/quote]

Hi Gary,

I belong to several forums for folks suffering with MCAD and mastocytosis. ANXIETY is often one of the first symptoms. As our bodies go into anaphylaxix (even chronic low grade anaphylaxis) our blood vessels leak, causing irratic low BP and fast HR, and lots of adrenalin to counteract everything. The inexpplicable adrenalin is what causes the anxiety.

I am not suggesting that you don't have a lyme infection, but you are classic for MCAD too. Stresses can set this off too. Don't discount too quickly.

Julie

#10 Michele

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Posted 31 March 2009 - 09:20 AM

Hi Gary,

Well your post has been something that I have been waiting for! Please click on my name, go under member posts and read my first post. I got sick 2 and a half years ago and a year into it, after 2 negative Lyme Western Blots and a negative Spinal Tap, tested positive for lyme 3 times. No doctor would take me seriously even with my Lyme test, you know how the other half of the doctors are- I month of abx and you're cured. However, my IGM was always positive showing a recent infection, although I had been sick non stop for over a year at that point. My IGENXEX test came back positive as well, although none of the test were ever overly positive, always 2 out of 3 bands or "indeterminately positive." I was put on antibiotics and found a LLMD in Mt.Kisco, NY. He believed in chronic lyme, and I wound up being on antibiotics for a year and 3 months. You name it, I've done it. I was on Amoxicillan, Zithro, Ceftin, Biaxin, Doxy, Doryx, even 26 days of IV Rocephin. This past December I finally came off of them, not because I was feeling any better but because I was developing GI bleeding. I still test positive for Lyme though! I never had any of the major Lyme symptoms like the muscle aches and joint pains until I came off of them, but they still are not that severe. I was always thought to have neurological Lyme, but never saw any improvement on the anti-biotics (I would always just get much worse after I switched to a new type after a few months. ) I was tested for Lyme last week and it STILL came back "borderline" positive! I don't know what to do, I was diagnosed with POTS 2 months ago and have had a lot of confusion since then. I know my tilt table test was abnormal, thus making POTS a definitive diagnosis, but I struggle with the Lyme still. I wonder if I ever had it, if something other infection was triggering my tests to become positive, if I had Lyme and now POTS is the outcome, or whether I still have it and need to be back on the Meds. I should probably also mention that I tested positive for Ehrlichia and Babesia 2 times. If you have ANY input, please let me know. This is the biggest mystery as far as my health goes, and I don't want to attribute everything to POTS if the Lyme is still there. I believe in long term abx if necessary, and wonder if I wasn't on them long-enough to see improvement. Some of the other patients in my LLMD's office didn't start seeing improvement for YEARS.

One last thing...before the POTS diagnosis in January, I went to Columbia University in NYC for 2 days in September to go for a Lyme Evaluation Study with Dr. Brian Fallon (I'm sure you've heard of him before). Although he is only a psychiatrist, hew has done extensive research on Lyme patients. His diagnosis was that I definitely had Lyme at some point, but after a year of antibiotics at that point, he did not know if Lyme would still be causing such strong symptoms. DO you have any advice? I'm sorry to rant, but after being sick for a year with no diagnosis, Lyme was my first answer. I took out books, went to seminars, found my LLMD, went on the forums, learned everything about it and was fine with that. I battled my story with Neurologists and Infection Disease doctors at Stony Brook, North Shore LIJ hospitals, you name it, trying to fight for my diagnosis. I had such high hopes when i found my LLMD and he believed me and was willing to put me on medicine and thought that was the end of my troubles. After not seeing ANY improvement and when the abx. were not working and causing more trouble than help, I gave up. Once I learned I had POTS, I now wonder if that was it all along or if my Lyme tests were right. Lyme was the story of my life for over a year and I am just SO confused whether it is still affecting me or not. As you know, there is no definitive test for it and all of my doctors are telling me I've had sufficient treatment. In your opinion, what do you think? My family doctor told me last week that once Lyme has infiltrated the nervous system, you will never get that fuction back. I am terrified that I will feel this way forever. Should I give the abx another go or do you think the Lyme is gone and the aftermath is POTS? PLEASE contact me...I went over a year thinking Lyme was my answer only now to be left with uncertainty.

Thanks,
Michele

#11 Michele

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Posted 31 March 2009 - 09:24 AM

Hi Gary,

Well your post has been something that I have been waiting for! Please click on my name, go under member posts and read my first post. I got sick 2 and a half years ago and a year into it, after 2 negative Lyme Western Blots and a negative Spinal Tap, tested positive for lyme 3 times. No doctor would take me seriously even with my Lyme test, you know how the other half of the doctors are- I month of abx and you're cured. However, my IGM was always positive showing a recent infection, although I had been sick non stop for over a year at that point. My IGENXEX test came back positive as well, although none of the test were ever overly positive, always 2 out of 3 bands or "indeterminately positive." I was put on antibiotics and found a LLMD in Mt.Kisco, NY. He believed in chronic lyme, and I wound up being on antibiotics for a year and 3 months. You name it, I've done it. I was on Amoxicillan, Zithro, Ceftin, Biaxin, Doxy, Doryx, even 26 days of IV Rocephin. This past December I finally came off of them, not because I was feeling any better but because I was developing GI bleeding. I still test positive for Lyme though! I never had any of the major Lyme symptoms like the muscle aches and joint pains until I came off of them, but they still are not that severe. I was always thought to have neurological Lyme, but never saw any improvement on the anti-biotics (I would always just get much worse after I switched to a new type after a few months. ) I was tested for Lyme last week and it STILL came back "borderline" positive! I don't know what to do, I was diagnosed with POTS 2 months ago and have had a lot of confusion since then. I know my tilt table test was abnormal, thus making POTS a definitive diagnosis, but I struggle with the Lyme still. I wonder if I ever had it, if something other infection was triggering my tests to become positive, if I had Lyme and now POTS is the outcome, or whether I still have it and need to be back on the Meds. I should probably also mention that I tested positive for Ehrlichia and Babesia 2 times. If you have ANY input, please let me know. This is the biggest mystery as far as my health goes, and I don't want to attribute everything to POTS if the Lyme is still there. I believe in long term abx if necessary, and wonder if I wasn't on them long-enough to see improvement. Some of the other patients in my LLMD's office didn't start seeing improvement for YEARS.

One last thing...before the POTS diagnosis in January, I went to Columbia University in NYC for 2 days in September to go for a Lyme Evaluation Study with Dr. Brian Fallon (I'm sure you've heard of him before). Although he is only a psychiatrist, hew has done extensive research on Lyme patients. His diagnosis was that I definitely had Lyme at some point, but after a year of antibiotics at that point, he did not know if Lyme would still be causing such strong symptoms. DO you have any advice? I'm sorry to rant, but after being sick for a year with no diagnosis, Lyme was my first answer. I took out books, went to seminars, found my LLMD, went on the forums, learned everything about it and was fine with that. I battled my story with Neurologists and Infection Disease doctors at Stony Brook, North Shore LIJ hospitals, you name it, trying to fight for my diagnosis. I had such high hopes when i found my LLMD and he believed me and was willing to put me on medicine and thought that was the end of my troubles. After not seeing ANY improvement and when the abx. were not working and causing more trouble than help, I gave up. Once I learned I had POTS, I now wonder if that was it all along or if my Lyme tests were right. Lyme was the story of my life for over a year and I am just SO confused whether it is still affecting me or not. As you know, there is no definitive test for it and all of my doctors are telling me I've had sufficient treatment. In your opinion, what do you think? My family doctor told me last week that once Lyme has infiltrated the nervous system, you will never get that fuction back. I am terrified that I will feel this way forever. Should I give the abx another go or do you think the Lyme is gone and the aftermath is POTS? PLEASE contact me...I went over a year thinking Lyme was my answer only now to be left with uncertainty.

Thanks,
Michele


Gary, you can IM me on AIM at HotPynkMMM. I will be glad to discuss the POTS/Lyme issue with you.

#12 Guest_GaryRN_*

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Posted 31 March 2009 - 09:47 AM

Michelle, I'm on AIM right now, but I don't see you. You can find me under username "Lymenurse"

Gary

#13 jjb

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Posted 31 March 2009 - 09:50 AM

Hey Gary.
I have many of the same symptoms you describe including the anxiety.
My anxiety is not a psych or emotional thing though ... it is just a quirky dys thing for me.
It comes w/ tachy or BP changes.

I woke w/ morning anxiety but knew it'd go away with cold water and cold air.

For me, dopa antagonists, like benedryl, is a HUGE trigger.

Several years ago I saw rheumy that thought all of my symptoms (pain, fatigue, high fever, tachy and ortho stuff) were caused by chronic lymes.
At the time I went with it, but now I know it is likely not at all related.
I think my little spirochetes are long dead.

I am wondering more and more more about what MAcksMom suggested, MCAD.

#14 Guest_GaryRN_*

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Posted 31 March 2009 - 10:25 AM

Michelle, look at Dr. Schallers chart Here


You will see that the Spirochete either lack a cell wall, making targeting by the immune system and abx more difficult.

Also, they can turn into the Cyst form. According to Dr. Schaller, Dormant form bacteria are not mobile and do not cause symptoms. Can survive antibiotics, starvation, pH changes, hydrogen peroxide, temperature variation, and most other adverse conditions. Converts back to spirochete form when conditions are favorable.

So you see what you are up against. From what I understand antibiotics actually cause the bacteria to change into the Cyst form.

This is the reason I use Salt / C and Rife. I have seen many like yourself that don't respond to abx tx with Lyme. They claim to Herx, but rather than the Herx being caused from bacterial die off, I would think it is safe to assume, it is from toxin build up of the abx being used and nothing else.

You need a cyst busting drug if you are going to use antibiotics. Most LLMD's arn't prescribing in this fashion. I don't know why. I love them to death for what they are trying to do, but it doesn't appear everyone is on the same page.

I do believe from what you told me your POTS is secondary to your Lyme and nothing short of that.

The spirochetes can penetrate into any tissue and when they get into the brain, CNS, and nerve fibers, they can cause any symptom you can imagine, including psychiatric disorders.

If you don't kill off the underlying problem and only treat the secondary, tertiary, etc. symptoms, then you will never get well.

Please take everything I say as education. I'm not a Dr. and I can't prescribe. I do tons of research. Dr. James Schaller is considered a world known expert on this stuff. I know him personally and he has probably done more research on this stuff than anyone alive. So what I post here is from his readings and personal conversations I have had with him over the phone.

Gary