How do you post your story link?/Entertaining poss. of Lyme

[TischSEB]

Hi – all this talk of Lyme has got me really wondering now…
I suppose SEB has a few risk factors for it – altho I never really considered it before. We lived in Hunterdon Co, NJ for a few years and I just found out this…

“Hunterdon County continues to have one of the highest rates of Lyme disease in the country, most likely due to its heavily-wooded environment and high deer population.”

How I was never aware of this, I don't know. He also used to do a lot of work outdoors as an environmental scientist. I did too -I spent almost a year in W. Va, KY, and Ohio doing field work in wooded areas where I would be routinely flicking ticks off of myself during the course of a day (big ones, tho). I was completely ignorant of a Lyme exposure.

Someone else in the board also mentioned that Lyme's often has cardiac involvement – which is one of SEB's initial symptoms.

Anyway – I would like to post SEB's complete story and get some feedback. How do people post the link at the bottom which takes you to the back story?

Also – I would like to thank everyone who has kindly written to me – I am sure I am not keeping up with responses the way I would like. My internet access is a bit sporadic.

[Parisa]

Tisch,

If you haven't already checked out http://www.lymenet.org   and take  a look.  The emotions sometimes run a little high over there but it has been in existence for years now and there is a wealth of information in the archives.  You can do a simple search on carditis and I'm sure you'll find out all sorts of information – all with a grain of salt, of course.

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

How I was never aware of this, I don't know. He also used to do a lot of work outdoors as an environmental scientist. I did too -I spent almost a year in W. Va, KY, and Ohio doing field work in wooded areas where I would be routinely flicking ticks off of myself during the course of a day (big ones, tho). I was completely ignorant of a Lyme exposure.

Tisch, you're not alone. I also live in one of the most highly endemic areas of the country and never gave it a second thought either. I was told Lyme was easy to diagnose and easy to treat and even when bitten not everyone got it, so it was no biggy. A couple weeks of antibiotics would clear any infection up and anyone with Lyme would be fine.

The truth is, in the majority of cases (not all), when Lyme is caught early and a person gets prompt treatment, Lyme is usually not too bad to treat with a month of abx. But – a BIG but – not everyone sees a tick (the nymphal ones are so small they are easy to miss, especially if embedded in scalp, underarms, groin, back, etc), possibly getting scratched off and never seen. Only 50% who do get Lyme get a rash and not everyone gets classic early symptoms…sometimes it's a summer flu that passes and then hits later down the road…slow and insidiously or like a sledgehammer. And, the tests are so atrocious that if you don't get a rash and you don't test positive on standard tests, you're likely to be told you don't have Lyme, even if you saw an engorged tick on you. I actually had two rashes and because I had two early Lyme tests that were equivocal was told I did not have Lyme in spite of all the classic symptoms. This information was quite wrong, given to me by my PCP, because any EM rash = Lyme, even in the absence of a positive test.

There is so much information about Lyme, because everyone, even our physicians have been led to believe that Lyme testing is accurate and it's easy to diagnose and treat. Any symptoms lingering after treatment are not Lyme and some mysterious, “post Lyme syndrome.” 

What I have learned on my journey is that Lyme, if not treated early, can lead to multi-system breakdown, is a pleomorphic organism the eludes the immune system by cloaking itself in outer surface proteins that match our own cells setting us up for illnesses that look like autoimmunity, comes with a host of just as devastating coinfections that, if left untreated or undertreated, leave us very sick with a coufounding array of symptoms. In a nutshell, it's hard to even contemplate that a tiny bug can create such havoc, but it's ruining lives everywhere, causing debilitating illness and is multi-systemic, much like its cousin syphilis (but more complicated with more DNA), also a spirochete, drilling into any tissue of the body, especially liking collagen-rich tissues….muscles, nerves, joints, vascular and lymphatic systems, heart, brain and other organs.

Every state in the US now has reported cases, there are over 100 strains of borreliosis in the US – some known to be more virulant than others – and most ticks are coinfected with multiple organisms, picking up everything each wild host is carrying during its two-year lifespan. It's been linked to RA, JRA, MS, Fibromyalgia, chronic fatigue, ALS, Parkinsons, Alzheimers, PRA, polymyositis, dermatomyositis, various forms of scleroderma….pretty much a full spectrum of rheumatic, cardio-vascular and neurological manifestations…sometimes in combination.

My best buddy, also here in CT, just came down with excruciating joint and muscle pain, almost overnight. She had horrible neurological signs, too….inability to concentrate, poor word recall, disabling fatigue and headaches, fevers, rib pain, swollen glands, heart irregularities, etc. Upon visiting her PCP, she was given a Lyme test and also tested for RA. Her RF and SED came back elevated, but her Lyme titer was negative. Her PCP prescribed prednisone telling her that in all likelihood it was RA and referring her to a rheumy. Fortunately she didn't take the pred and battled it out for several weeks waiting for her LLMD and rheumy appts, as both her sister and I have Lyme and we kept telling her to consider it despite never seeing a rash or tick. She works around horses, has a large property of grassy fields, and has lived in CT all her life. Her PCP sent her to a rheumy, but in the meantime, she made an appt to see a LLMD and had a second ELISA run. This time, she was very, very fortunate and her second test for Lyme came back unquestionably CDC positive. She is one of the 'lucky' 50%! She has also turned up highly positive for babesia and is now receiving proper treatment. So this begs the question…what of the other 50% who never do test positive by CDC standards? What do they have? Some idiotpathic disorder or unknown eitology?

My friend is an RN and it was very hard for her to wrap her hear around it possibly being Lyme when she hadn't seen a rash or tick and her initial tests came back negative. It went against everything she had been taught and all the false propaganda that is doled out about Lyme….but being a nurse seemed to make it even harder to question medical authority. I'm so grateful she's getting proper treatment now. She's seen my pain and struggles and she was devastated this could happen to her, too, just as I was to think she may have the same challenging road ahead that I've had. Hopefully, just being 6 weeks in with symptoms, she will clear it now with adequate treatment from a Lyme doc who knows his stuff….that is, providing it was a recent infection and not one she's had for many years that has just surfaced. :doh:

I was completely ignorant of Lyme before I became so sick. I'd pulled a tick off my scalp about 10 years ago and never saw the tick that may have triggered my Lyme 3 years ago. It's possible I was infected for a long time (I had a number of neuro signs that I just never pieced together) and my immune system probably just kept it at bay until reinfection or the stress of my mother's passing just flipped the proverbial switch.

So, don't feel bad, Tisch that you never considered Lyme before. The misinformation that has been purveyed by the IDSA and CDC, the very organizations we rely on to give our physicians proper information, has been the cause of much suffering all over the US (and the world, as the world has been following US guidelines). And, it has become so highly political that even our physicians are too afraid to even say the word Lyme, let alone treat it, in case they lose their medical licenses.

If you want to learn more, the best resources are “Cure Unknown,” by Pam Weintraub and also the movie documentary, “Under Our Skin.” You'll also get a pretty good Lyme 101 by listening to the IDSA Lyme hearings that were held in Washington on July 30th, that presented both sides of the ongoing controversy.

http://webcast.you-niversity.com/idsaArchives/

Hope something here might help.

Peace, Maz

 

 

[TischSEB]

Hi all – just wanted to post an update and more fuel for the Lyme possibility. Because the polymyositis (proximal muscle weakness and wasting) had been so severe and “quality” of life-threatening, these symptoms tended to not seem so important. Also, we attributed a lot of what was happening to effects of high dose prednisone and the natural terror that comes with a rapidly progressing and ineffectually treated disease. But looking back over my documentation from the last year and a half, the following symptoms have also been present or developed (and are contained on list of symptoms at thelymelight.net. The numbered symptom is how it appears on the list, the comment in parenthesis is my own observation with regards to SEB's case :

1. Night sweats (more frequent during first year, occasionally now)
2. Sensitivity to noise (noted from Dec 08 to present)
3. Tremors (hand tremors – noted by an endocrinologist we consulted)
4. Restless legs (especially at night (this has been terrible lately))
5. Stammering/stuttering ( I noted stuttering last year -assumed it was illness related anxiety. )
6. Mood swings/irritability (I assumed this was prednisone related, could still be.)
7. Panic/anxiety attacks (This would be natural given the condition of rapidly becoming disabled.)
8. Overemotional reactions – (I assumed this was related to inappropriate use of Ativan for anxiety)
9. Insomnia – frequent, but assumed SEB was going to bed too early
10. Acid Reflux – (SEB had this for several years before being severely stricken.)
11. Heart palpitations or extra beats ( SEB often has episodes of each of these, and is currently on heart meds to control them. Also, severe illness onset began with an atrial fibrillation.)

From what I gather, polymyositis would be an more unusual manifestation of Lyme (please jump in anyone if you disagree). There is absolutely no joint involvement at this point. Also – SEB was tested twice before for Lymes by an Infectious Disease specialist. Both tests came back negative. I plan to contact Igenex and get the real test done. Is it necessary to get the full suite or are a select few sufficient for proof?

As far as the AP, SEB has been on it for 27 days now, and no obvious sign of a herx, just some good and very bad days in general. He is still on both prednisone and IVIG, so it is possible that these would mitigate herx effects. Interestingly, (and I hesitate to even mention it until we get a second result) – 4 days after starting AP, he had a blood draw for CPK and for the first time since Feb 09, this result went down slightly. It is still way too high (in the 3000's – should be <200 ) - but at least it did not go up. I have no idea what that means yet.

That's all for now! Any comments welcome.
Tisch

PS -Have we heard from Troysmom lately?

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

SEB was tested twice before for Lymes by an Infectious Disease specialist. Both tests came back negative. I plan to contact Igenex and get the real test done. Is it necessary to get the full suite or are a select few sufficient for proof?

As far as the AP, SEB has been on it for 27 days now, and no obvious sign of a herx, just some good and very bad days in general. He is still on both prednisone and IVIG, so it is possible that these would mitigate herx effects. Interestingly, (and I hesitate to even mention it until we get a second result) – 4 days after starting AP, he had a blood draw for CPK and for the first time since Feb 09, this result went down slightly. It is still way too high (in the 3000's – should be <200 ) - but at least it did not go up. I have no idea what that means yet.

 

Hi Tisch,

You know what struck me about Seb's symptom list? Hyperthyroidism can also appear as you've described. Has he had a thyroid workup? If so, please ignore…just  a thought that came to mind that you might want to rule in/out. 😉

Polymyositis is pretty rare anyway, but it has been linked to Lyme, as most AI diseases have, unfortunately. Here's a link to CanLyme about Lyme and MS which mentions polymysositis, but if you do a search on this site, you might find more. In this article it mentions the response of the disease listed, including polymyositis to antbiotic therapy, though might be a little too early at 4 days on AP to attribute his bloodwork to the antibiotics. Usually things worsen for a while…not always, but in many cases while herxing is going on:

http://www.canlyme.com/lymemultiplesclerosis.html

Interesting what you say about IVIG mitigating Seb's not having a herx….somehow think it's more likely to be the pred, but in the book, Dr Brown would measure patient's gamma globulin levels and it seemed that the patients with higher levels would herx more. Why? Well, because the immune system is able to fight harder against the infections. This is why inflammation levels can sometimes be non-existent in some Lyme patients, because the immune system becomes so suppressed, it can't put up a fight. I must have had pretty good gamma globulin levels in that case!  

If Seb is getting IGeneX testing done, most people here just start off with the standard western blot (IgG and IgM, which I think are #s 188 & 189, without checking their website). They keep the blood for a month, so it's possible to get further coinfection testing if you want, but a good Lyme doc won't rely on the tests anyway…so if Seb gets a positive band on the WB, then you may want to look into this further. Here is a link to Dr. C's (LLMD) interpretation of the IGeneX WB to help you when Seb's results are returned. You'll want to get copies from the ordering doc:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077

All the best!

Peace, Maz

[TischSEB]

Hi Maz,

Thanks for your response. Yes, for a while last year I was absolutely convinced that this was a hyperthyroid situation, specifically thyrotoxic myopathy – which also severely affects proximal muscles. His thyroid did show up as slightly enlarged, but the endocrinologist did not think this was significant. We saw her several times and ran multiple sets of blood work, which only revealed a Vitamin D deficiency which was improved with supplements. In her opinion, this was not a thyroid related issue. I was convinced because there is a possible history of Grave's disease o his mother's side and it would have accounted for the cardiac issues and (at the time) weight loss.

The way I understand IVIG is that it gives you a temporary immunity, sort of displacing the normal aggressive immune function for about 4-6 weeks. So I would assume it would stop you from feeling the full effect of your your normal immune response? I agree tho that the prednisone would be helping. Or maybe there is just no herxing happening – hard to say, it is too early.

Yes – I also agree it was too early to attribute the CPK to the AP, it was just a happy coincidence. We had come to dread that monthly result – as it got higher and higher we were expecting more regression to a disabled state as well as his doc pushing for Imuran. He has a good doc now who fought the insurance on his behalf (for the IVIG) so we would like to stay in a good relationship with him.

Thanks for the Lyme test info and the PM link – we will post what we find out.

Tischjavascript:emoticon(';)',%20'images/emoticons/wink.gif')

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

The way I understand IVIG is that it gives you a temporary immunity, sort of displacing the normal aggressive immune function for about 4-6 weeks. So I would assume it would stop you from feeling the full effect of your your normal immune response? I agree tho that the prednisone would be helping. Or maybe there is just no herxing happening – hard to say, it is too early.

Hi Tisch,

I was seeing an immunologist in June about possible IVIG and I questioned all this, too, trying to figure it all out. The way he explained things to me may not apply to SEB, but essentially, in his opinion, people with AI diseases are actually immune-suppressed, because they are on immune-hyperdrive. In other words, the immune system is running on “high” but it's not functioning normally in other ways…misdirected, so to speak.  So, what we wind up with is a bunch of auto-antibodies being produced, but sort of floating aimlessly around the body, serving no helpful purpose and/or up to no good. He said IVIG will normalise immune function in immune-compromised patients to temporarily assist the body to better direct its attack at the underlying infection (hence, more herxing anticipated)….bearing in mind that the tetras aren't killing anything, just slowing the bugs down…it's our immune system doing the killing.

The way I've tried to understand his reasoning is that we are immune-compromised…something is waylaying our immune system, so that it's malfunctioning and not doing what it was intended to do. In this context, being immune-compromised also means immune-suppressed, if that makes any sense?

Peace, Maz

[TischSEB]

they are on immune-hyperdrive. In other words, the immune system is running on “high” but it's not functioning normally in other ways…misdirected, so to speak.

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

So the way your immunologist described IVIG, it sounds like he/she believes it is addressing the “autoimmune” condition by it's mainstream definition – as if the immune system has “gone rogue” and needs to be re-directed, brought under control, or suppressed? Does this doc give any credence to the bacterial/mycoplasmal infectious cause?

Also – just out of curiosity – did you decide against IVIG and why? I believe that it helped SEB immensely – but only up to a certain point, which is how we ended up here 😉 after pressing further with our research.

Hi Tisch,

Yup, the immunologist I saw gave complete credence to infectious causes and was referred to me by my LLMD. 

He explained that he believes Lyme patients are immune-suppressed (and agreed wholeheartedly I should not take any form of immuno-suppressive therapy). He said the immune system is on high alert, being diverted by these hidden, chronic infections and running on hyperdrive, but looking aimlessly for infections it can't find. The infections hide intracellularly and deep within tissues in their various pleomorphic forms, leaving antigenic trails behind them that cause the immune system to produce all sorts of unhelpful antibodies in their wake and causing what appears to be an attack on self. His belief is that IVIG normalizes a fatigued immune function by fortifying it….leaving it better able to fight the underlying infections. I guess it's kind of like throwing a Power Bar to a disoriented marathon runner who is fighting to the finish line, but hasn't been able to find the finishline tape?  

I came across this video on the Envita Clinics website and it probably explains much better than me how the immune system becomes damaged/diverted by these pathogens. It's very simplified, because there is more to a spirochete than is shared here (other morphed forms):

http://www.envita.com/sections/disease/lyme/default.aspx

This doc suggested IVIG might be helpful during my first visit as he'd found it very helpful in prior Lyme cases of his, but after running a bunch of immune function tests (needed to prove a case for IVIG to insurance), he found my immune system was working surprisingly well. I guess the result of 2.5 years of antibiotic therapy? 🙂 As it turned out, my Lyme doc's suspicions were right and my backslide was related to drug-induced lupus, which didn't need IVIG, just a switch to a different tetracycline.

Peace, Maz

[TischSEB]

Hi Maz,

Thanks so much for that immune system/IVIG explanation and the video link. That's about the best explanation I have heard so far. Our 3rd neurologist (on our 4th – who is good) – waved his hand in the air and said, “we don't know why it works, but maybe it will knock it out” – “it” meaning an undiagnosed muscle disease, as the possibility of an infectious etiology had never been raised by our docs.

Your wealth of knowledge and explanations have been invaluable on this board – are you in the medical field to begin with – or is this all acquired with your illness?

Thanks!
Tisch

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

are you in the medical field to begin with – or is this all acquired with your illness?

Tisch, I wish! All picked up up through hard personal experience, I'm afraid. The nearest to the medical field I've been is having a Dad who is a veterinary surgeon (now retired) and being exposed to lots of medical terminology growing up. He has always been a pretty clever medical intuitive and diagnositician, coming from an era when they had little in the way of diagnostic tools and medicines. It always amazes me how much we (patients) all pick up along the way…we'd probably all be able to get degrees in our own fields/conditions!

Peace, Maz

 

[Trudi]

[user=1536]Tisch&SEB[/user] wrote:

Hi Maz,

That's about the best explanation I have heard so far.
Your wealth of knowledge and explanations have been invaluable on this board –

Totally agree!!  Thanks, Maz, for all the time you take in your explanations.

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Nickie_M]

[user=1536]Tisch&SEB[/user] wrote:

Your wealth of knowledge and explanations have been invaluable on this board

I concur.  Thanks Maz for your tireless efforts and expertise.  We all benefit from your in depth analyses of all that's presented to you. :):):)

Nickie

[TischSEB]

[user=1536]Tisch&SEB[/user] wrote:

Hi all – just wanted to post an update and more fuel for the Lyme possibility. Because the polymyositis (proximal muscle weakness and wasting) had been so severe and “quality” of life-threatening, these symptoms tended to not seem so important. Also, we attributed a lot of what was happening to effects of high dose prednisone and the natural terror that comes with a rapidly progressing and ineffectually treated disease. But looking back over my documentation from the last year and a half, the following symptoms have also been present or developed (and are contained on list of symptoms at thelymelight.net. The numbered symptom is how it appears on the list, the comment in parenthesis is my own observation with regards to SEB's case :

1. Night sweats (more frequent during first year, occasionally now)
2. Sensitivity to noise (noted from Dec 08 to present)
3. Tremors (hand tremors – noted by an endocrinologist we consulted)
4. Restless legs (especially at night (this has been terrible lately))
5. Stammering/stuttering ( I noted stuttering last year -assumed it was illness related anxiety. )
6. Mood swings/irritability (I assumed this was prednisone related, could still be.)
7. Panic/anxiety attacks (This would be natural given the condition of rapidly becoming disabled.)
8. Overemotional reactions – (I assumed this was related to inappropriate use of Ativan for anxiety)
9. Insomnia – frequent, but assumed SEB was going to bed too early
10. Acid Reflux – (SEB had this for several years before being severely stricken.)
11. Heart palpitations or extra beats ( SEB often has episodes of each of these, and is currently on heart meds to control them. Also, severe illness onset began with an atrial fibrillation.)

From what I gather, polymyositis would be an more unusual manifestation of Lyme (please jump in anyone if you disagree). There is absolutely no joint involvement at this point. Also – SEB was tested twice before for Lymes by an Infectious Disease specialist. Both tests came back negative. I plan to contact Igenex and get the real test done. Is it necessary to get the full suite or are a select few sufficient for proof?

Adding to the list of symptoms:

12. Stretch mark pattern on arms – my recent research indicates this may be a a sign of bartonella infection.

Does anyone have experience with this type of rash as related to Lyme or co-infection?

Tisch

[Maz]

[user=1536]Tisch&SEB[/user] wrote:

Adding to the list of symptoms:

12. Stretch mark pattern on arms – my recent research indicates this may be a a sign of bartonella infection.

Does anyone have experience with this type of rash as related to Lyme or co-infection?

Hi Tisch,

Think you might be interested to read this!

http://www.lymeinfo.net/bartonella.html

Peace, Maz

[Author]

Posts