Just thinking aloud

[spacehoppa]

As many of you know, I've been diagnosed with Lyme disease and my mum has recently too. We've both had Rheumatoid arthritis now for 20 something years each.

We lived in Atlanta Georgia for a couple of years, in the middle of a forest, 30 years ago now. At the time the locals warned us repeatedly about getting ticks attached and how to remove them safely. I really didn't understand at the time what the fuss was about (I was seven), but now of course, I do!

Back to the point. It seems as though everyone I know who visited us whilst we lived there has come down with an auto-immune disease in the past 30 years, most of them in the past 2 years.

My mum and I have Lyme, my dad had all the symptoms of babesia and bartonella (he sadly died so we'll never know). My uncle and cousin who came to stay also got rheumatoid arthritis (probably Lyme). Another friend who visited now has multiple sclerosis. His mum (who also came) has palindromic RA, his dad has an, as yet, undiagnosed problem with swollen lymph nodes in his neck and strange heart problems. Another friend who visited has just been diagnosed with sarcoidosis. The only disease we're missing so far is scleroderma… I feel it's only a matter of time!

Sorry, I don't mean to make light of this, it's just that it troubles me that literally all of our family friends and relatives who visited us in America now have pretty serious auto-immune diseases. Is this just a really weird coincidence? I wish I knew for sure. One thing I do know, I'm not going to be able to convince them all to get tested for Lyme and co-infections. *Sigh*.

Am I going mad? Am I seeing Lyme where is doesn't exist?

[Trudi]

[user=415]spacehoppa[/user] wrote:

Am I going mad? Am I seeing Lyme where is doesn't exist?

Hi Ruth–

I think you are connecting the dots.  The dots may not always lead to a Lyme diagnosis, but I always recommend Lyme testing to those who have the symptoms and are suffering with an autoimmune disease.  Better to be safe than sorry.

Some appreciate the advice–some roll their eyes–as far as I'm concerned my “duty” is done.

Take care,

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?

[Maz]

Hi Ruth,

I second Trudi's insights! Correlation doesn't necessarily imply causation, but with a history of living in a Lyme endemic area and knowing what this disease has done to you, your Mum and so many here, it's just prudent to look into this as a potential cause…if open to doing so, of course. 😉

It's such a tragedy that your family has been so badly hit with rheumatic disease/Lyme like this…genetics and strains of infections clearly play some role in situations like this. Just MHO, but as your friends also have AI problems (not of your genetic line, but having visited you), are what really ring the buzzers in my head and strongly suggest a possible Lyme connection. I'm nt surprised you're questioning this, Ruth…I would be, as well.

Peace, Maz

[katieb]

Hi Ruth, So your mum has Lyme too !! That is amazing ! I have been trying to follow up my Western Blot with a Band 31 epitope test, as Breakspear do not yet have this on their list. I emailed Dr H at Igenex to ask whether I could order the test without a Dr's signature, but no reply.

FINALLY saw my 'new' GP this morning, and asked whether he would sign the request form for me. He was very amenable and chatty about Lyme and thought it was as good idea to get the test (Dr D at Breakspear has written to him). And – get this – he asked whether I'd been in North America !!! When I replied yes for 2 years (Oklahoma in my case) he said 'Well there you are then'. So what do you make of that. Have I got myself a Lyme-educated (I won't say Lyme literate exactly) GP ? I can't believe my luck !

Anyway I faxed off the form today with URGENT scrawled on it, as my blood sample 'expires' on May 1st. I hope they fit it in this week. I have been very slow getting this sorted. Having 2 17-year-olds doing uni applications/learning to drive/etc etc, not to mention 18th birthday BBQ last Sat, has been very time consuming. A pleasure for you yet to come !!!

I am very sorry to hear of all your friends and relatives illnesses. You can't help but wonder can you ?

Hope your treatment is going well.

Katie 🙂

[JBJBJB]

I am more curious about children who were born to the parents who have lyme disease.

I am also wondering about water. Was your water well water or city water?

 

[Roz]

Hi Ruth,

If your up for it, could you let me know if your mom tested postive on band 30?

Band 30 is the Euro. strain which I test postive for, I also test postive for 31. I have an Engish background.

I have both strains.

x Roz

[sjess]

[user=415]spacehoppa[/user] wrote:

Am I going mad? Am I seeing Lyme where is doesn't exist?

I don't think you are going mad at all. With all that going on, it seems quite reasonable to suspect that there is something causing all this to happen. I have heard of other instances where neighbors all came down with Lupus. It stands to reason there is some type of contagion at work.

[spacehoppa]

Thanks for your thoughts everyone. The more I think about it, the more I do wonder. Although, whether my musings will actually help any of them is doubtful, sadly.

I agree Trudi, once you have told people about the possible connection your 'duty' is done. Unfortunately people have to find this stuff out for themselves, and they have to be motivated to do so, which seems to be the elusive part.

Most people I know trust their doctors implicitly and would never look into their disease further than what their consultant tells them about it. There's nothing I can do about this and I have to accept that.

And let's be honest, this isn't an easy road, even if it is the right one. Getting worse before you get better would put off most people right off the bat.

And just to top it all, my (brilliant and wonderful) GP told me yesterday that my rheumatologist at the NHS rheumatology hospital I've been going to for 22 years have just fired me as a patient! Apparently my going to see another rheumatologist for Lyme disease treatment was beyond the pale. I am shocked, but not surprised, if you see what I mean. And they didn't even inform me personally, just wrote to my doctor telling him to tell me not to come back! There is a word for these people, but I am too much of a lady to write it down :angry: .

Katieb– Wow! What a wonderful GP!! That's amazing, I am falling off my chair in happy disbelief. Well, it will certainly help loads to have an on-board GP. I have been very pleasantly surprised by my own GP who has been more supportive than I imagined possible. It makes the impossible, possible. I too had a strong positive on band 31. Do you know what that means precisely? Is it significant for some strain or other?

Well done for getting this sorted. I do hope it leads to treatment for you. Sadly, although my mum got a positive Western Blot, Dr D thinks her Lyme disease is controlled enough not to warrant treatment. I do see his point of view, as she has been on daily tetracycline for 8 years now and her arthritis is usually in the remission range for ESR and CRP. But I was still disappointed for her not to get the full treatment I have had.

JBJBJB – Yes. I am curious about that too and very worried for my own boys as I wasn't aware of the diagnosis until after both pregnancies. I watch them like a hawk for signs obviously. One day I will get them both tested, but I am living in blissful ignorance at the moment.

Roz – Sorry I can't remember whether mum was positive on band 30, but she had mostly the same bands as me as I remember, and I was not positive on band 30. I was strongly positive on band 31 though. I'm not sure what all this means I'm afraid. We most likely have the american strain of BB, but I wouldn't be surprised if there was some european in the mix as well, given my penchant for hill walking and cross country running and horseriding as a child.

[katieb]

Hi Ruth,

That is so unfair of your rheumatologist to react in that way. Very impolite, and it suggests a lack of confidence in his own ability. You are probably better off without him. Your GP sounds supportive, thank goodness, so hopefully you will be able to get your prescriptions OK.

Dr D wrote to my rheumy, and my GP about 2 weeks ago. I've not heard anything from the rheumy yet. I can't really imagine him reacting in that way – but you never know ! We'll see !

I'm not really sure of the significance of band 31, except that you can get an additional test now specifically on that band, to rule out cross-reaction with other viruses etc, and confirm Lyme. My band 31 Western Blot was only IND but Dr H at Igenex recommended I have that extra test, as several others on here have.

Dr D recommended that if I need further meds it should be Clindy and Hydroxyquine. Perhaps I showed more clinical symptoms than your mum, even though ESR, CRP etc all normal. If I get a positive on the band 31 I may well ask to be prescribed those as my wrists are really not great at the moment.

Anyway 😛 to your rheumy and :dude: to Dr D – and by the way, I don't think he is going anywhere in a hurry – no worries there :roll-laugh:

Katie 🙂

[Kim]

[user=1758]Roz[/user] wrote:

Hi Ruth,

If your up for it, could you let me know if your mom tested postive on band 30?

Band 30 is the Euro. strain which I test postive for, I also test postive for 31. I have an Engish background.

I have both strains.

x Roz

Roz,

I'm positive on both Bands 30 and 31 that came from my private tick farm in my back yard in Indiana.  :doh:

kim

[nord]

Hello Ruth!

Interesting, although it is a fairly common phenomenon among medical students that they see the condition they are learning in themselves and everywhere around them, chronic infections seem to be vastly underdiagnosed with a lot of infected people experiencing less than optimal health to be “discovered”. I have a slightly similar experience as I have been reading about the Chlamydiales at and chlamydiae.com and cpnhelp.org (thank you Maz!), and other microbes, and think about friends and relatives that are in the range from not feeling entirely OK to suffering from severe illness. Thinking he/she really ought to be tested, but how?

Diagnosis seem to be a challenge, I was found to have elevated IgG for B Burgdorferi, but as I have spent much of my life in an area where this is very common, I was not surprised (and the GP just brushed it off “everyone is positive”). With IgG staying positive for life, is the only way to establish active infection PCR? It seems similar for other conditions from chronic infections.

My GP reacted with quite a bit of confusion to the tests Dr D had ordered (except HLA-B27), asking “he's rather alternative, isn't he?” Himself ordering quite a set of tests to check for RA (which I am fairly certain I _don't_ have, but if there is anything it would be seronegative like ReA or uSpA). Then during a phone appointment he sighed “i got a long letter from an English hospital”, not bothering to deal with it, it seems. Your rheumatologist seems to have been sensible enough to fire her/himself 🙂 (it seems you don't need them much, the traditional rheumatologists, or was it really a loss). If you are a patient at the hospital, can the individual physician really tell you not to come (instead of having a different one take on your case)?

[Maz]

[user=2031]nord[/user] wrote:

Diagnosis seem to be a challenge, I was found to have elevated IgG for B Burgdorferi, but as I have spent much of my life in an area where this is very common, I was not surprised (and the GP just brushed it off “everyone is positive”). With IgG staying positive for life, is the only way to establish active infection PCR? It seems similar for other conditions from chronic infections.

Hi Nord,

You've hit the nail on the head and this is the lynchpin that is at the bottom of the Lyme Wars. Most docs just abide by the US IDSA treatment guidelines for Lyme and know very little about the organism and its hitchhiking friends other than perhaps a paragraph in a textbook from med school.

Unfortunately, though, Lyme is not like your average infection. It waxes and wanes, which changes the landscape of the IgM and IgG readings on a Western Blot continuously. This makes one test in time…just that…a moment in time, which really doesn't say much at all. When active, Lyme can reproduce a positive IgM test as if it was a brand new infection. This link explains a bit better than I can:

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

Trouble is, Lyme is highly pleomorphic and shape-shifts to suit different environmental conditions. When under antibiotic attack, it shifts to a spheroplastic cyst form, a dormant form of Lyme. These cysts have diminished outer surface proteins, so may not be picked up by the immune system (less antibody to test) as readily as their spirochetal counterparts. You can can watch a video of the spirochete reverting to cyst here:

http://www.youtube.com/watch?v=lVmCa70bAxE

No test is definitive for Lyme, unfortunately, and the Western Blot is still thought to be superior to PCR and is used by most Lyme Literate physicians. However, a negative test will not and shouldn't exclude a diagnosis for Lyme and really must be a clinical diagnosis. A positive test is just a nice bonus.

Your GP may in fact be right…many, many people may test positive for Lyme. It's almoost impossible to live in certain parts of the world now and not be exposed. The difference, however, is that there are known to be 300 stains of borreliosis world-wide and some are definitely more virulent and disease-producing than others. Probably 95% of folk who have been infected will remain largely symptom-free and may never know they have it (until perhaps they reach old age and develop Parkinson's or Alzheimer's and it's brushed off then, too). Their immune systems are strong and they can keep the infection(s) at bay. For others, however, a serious car accident, a period of intense stress, an unassociated illness, a surgery, etc, may trigger off a latent form of Lyme. Then, there is also the genetic proclivities with which we are all predisposed and environmental exposures that may take us down. There is so much still unknown about Lyme and, as my LLMD says, “The book on Lyme is definitely not closed.” It's actually very unscientific and very closed-minded of any doc to just lump every patient into the same heap (easily diagnosed, easily treated, everyone has it, etc). We're all unique and we all respond to infections differently.

So glad the cpnhelp site has been helpful, Nord. 🙂 Interestingly, the protocols used for chlamydia pneumoniae are very like Lyme protocols.

Sending good wishes to you and do hope you are finding the best path to wellness for you.

Peace, Maz

[Trudi]

[user=415]spacehoppa[/user] wrote:

And just to top it all, my (brilliant and wonderful) GP told me yesterday that my rheumatologist at the NHS rheumatology hospital I've been going to for 22 years have just fired me as a patient! Apparently my going to see another rheumatologist for Lyme disease treatment was beyond the pale. I am shocked, but not surprised, if you see what I mean. And they didn't even inform me personally, just wrote to my doctor telling him to tell me not to come back! There is a word for these people, but I am too much of a lady to write it down :angry: .

Sounds like your rheumy may be a bit embarrassed.  Here he was putting a band-aide on your symptoms for all these years never investigating further for the real cause.  What a shame!!  What needless suffering!!

Thankfully, the word is getting out.

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?

[Author]

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