AI Diseases & Lyme Disease

[tcregon]

well i finally got in to see an LLMD as I have known for a long time even before diagnosis for RA that I had lyme disease. Just couldnt get a positive test and have had this for 5-9 years. Finally, i am undergoing treatment and still taking my mino. I started mino in Aug 2010 and my labs are down a little but not a lot but i feel like a different person since starting my mino. Now I’m curious if anyone suspects they have their AI disease brought about by lyme disease. Just curious if anyone being treated for lyme and AI disease has found that the AI disease goes away once the lyme disease is treated. Just a thought and curious as I do notice so many people with AI diseases now also have lyme written here too.

[Maz]

Hi TCregon,

Yes, my RA began right on the heels of two bulls-eye rashes. The RA came on with avengence and I started with swift onset, very severe RA within two months and was highly sero-positive for RF and anti-CCP and a good deal of inflam. The early classic signs of Lyme, like stiff neck, flu-like symptoms, malaise, fatigue, migraines, migrating, palindromic arthralgias and myalgias all morphed into fixed joint pain very quickly. Although it was horrendous going from excellent health to suddenly being in bed-ridden agony in every joint for months, I now consider myself somewhat ‘fortunate’ that I was one of lucky ones to see the rashes and know what was going on…even though my standard Lyme tests were equivocal and deemed negative by my PCP. What I discovered later is that regardless of any test, a bulls-eye rash = Lyme. For others, they can go years with symptoms creeping up slowly and never being able to identify the source of the problems, often chasing from doctor to doctor for a long time, without any diagnosis or an incorrect diagnosis. Only 30 to 50% of people ever see a rash, most never see the tick, and the standard tests for Lyme are notoriously inaccurate, missing what is estimated to be about 50% of cases. A person can be infected with Lyme and coinfections for decades before any late symptoms arise.

There are many who arrive here with a rheumatic disease, already knowing they have Lyme, but there are others who are finding out much later they had Lyme all along and that it may have been a cause of their rheumatic disease. I suspect that I had probably been infected for about 12 years prior and was either re-infected (increase in pathogen load can trigger latent Lyme) or a period of great stress brought it on and my bulls-eyes were late stage rashes (my mother passed away during this time).

The following video link describes how Lyme can ‘look’ like an autoimmune disease. To all intents and purposes, it is a “self-attack” on our own tissues, but because borrelia can drill into any tissue, hide within our own cells, morph into forms that have reduced outer surface proteins that our immune system has difficulty detecting, hides out in bio-film communities, etc, this means that the self attack is not “idiopathic” at all. It is just that the immune system can’t find the infections and so our own tissues become the collateral damage.

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

I remember asking my Lyme doc what I had in the beginning – RA or Lyme? He said it’s both, but once the infections were all appropriately addressed, then the RA would remit. It’s taken a good 4 years, with some hiccups along the way, but my very severe RA is getting closer to remission every month. 🙂 I am now having many RA-free days, waking up with no morning stiffness, and just have a little residual swelling in one knee and ankle left.

[Todd WI]

I’m still working on beating Lyme and hoping my AI goes with it. Here’s a story I like, not sure about it’s credibility, but want to believe it because I like how it ends:

“…Today, 10 months later- she has no joint pain. Her memory is back to normal. The sweats are gone. Minimal neuropathy remains. Her psoriasis has resolved. She takes Plaquenil and is off Methrotrexate and Sulfasalzine. Incidentally, I have observed clearing of psoriasis in several other patients treated for Lyme disease.”

http://lymemd.blogspot.com/2009/02/ok-it-is-not-lyme-disease-does-it.html

Todd

[tcregon]

Thanks Maz and Todd for sharing. My LLMD told me she just wasnt sure if my RA would go away with the Lyme. She has had other patients with high RF factors but never saw the sed rates on them. I brought all my previous tests with me and it showed I had a high Sed rate, so she just isnt sure. She told me she looks forward to seeing what happens since I’ve had so much success with the mino giving me relief but so far hasnt lowered my labs by much, but the good news is I think they are all a little lower than my labs I had done in july right before i started the mino. So I’m really hoping. Maz you have been on abx since 2006 but if I understood correctly your labs never really showed the RA itself. Good luck to everyone here, may we all be blessed with relief and healing.

[dianne-sunshinecoast]

thank you all for this info, maz you sound like me with the early blood tests, but my tick bite was 50 yrs ago, however im not being a victim here , but my life has been quite horrendous, especially the last 22yrs, i wonder ?i amgoing to see a haematologist about this pipoint red rash . ,it has on the referral …keen to exclude myeloproliferative disorder?.. best wishes to you all…what are AI diseases? ..kind regards di…

[Maz]

@tcregon wrote:

I brought all my previous tests with me and it showed I had a high Sed rate, so she just isnt sure. She told me she looks forward to seeing what happens since I’ve had so much success with the mino giving me relief but so far hasnt lowered my labs by much, but the good news is I think they are all a little lower than my labs I had done in july right before i started the mino. So I’m really hoping. Maz you have been on abx since 2006 but if I understood correctly your labs never really showed the RA itself.

Hi TCregon,

Yes, I have been sero-positive for RA – at my worst, my RF was in the mid-400s, my anti-CCP has been in mid-200s and my CRP was 44. My SED was strangely always within range – go figure. All my labs normalised after a year of hefty Lyme abx protocols and then a further 10 months of low dose AP (mino/zith)…but at around the 16 month mark, I unfortunately had a run-in with drug-induced lupus from the mino and this set me back. There has never been an abx as beautifully effective for me as the mino, which is the shame of it, but other classes of abx have worked wonders in their own ways. For instance, my anti-CCP responded amazingly well to Moxatag, coming down by 40 points per month during the 8 months or so I was on it (775mg BID), along with Diflucan (another Lyme treatment). And the Mepron/zith combo cleared my recurrent malarial-type sweats and migraines from babesiosis.

The trouble with Lyme is that while monotherapy with just mino might work for some (perhaps they aren’t suffering with coinfections or have a less virulent strain of Lyme), quite often the sickest patients are coinfected and needed a range of different abx to hit the various bugs, as ticks can pass a multitude of things in addition to borreliosis.

Lyme can appear with a mysterious lack of inflammation, but it can also manifest with a huge amount of inflammation. The only way to know if combination Lyme txs will work for someone is to do a bit of therapeutic probing, which many LLMDs do, using various classes of abx to challenge the patient and gauge response. Testing is so awful for both Lyme and coinfections that most Lyme docs admit that it’s a bit of a challenge to figure this out in many chronically sick patients and there are usually no quick cures. It’s such a tricky organism that has learned how to hide from both immune surveillance and to protect itself from abx attack. So, unfortunately, there really isn’t a cookie-cutter approach for Lyme patients and no basic protocol that will work in every instance. It’s all a bit of a “feel as you” type of thing. So, working with a doc who absolutely believes in infectious causes and knows their bugs and abx is the optimal way to go about this. The challenge for many, however, is finding such a special doc who will work with a patient in this way.

Thanks so much for your kind wishes TCregon and I wish you health and healing, too, and that it comes swiftly to you.

[Maz]

@dianne-sunshinecoast wrote:

i wonder ?i amgoing to see a haematologist about this pipoint red rash . ,it has on the referral …keen to exclude myeloproliferative disorder?.. best wishes to you all…what are AI diseases? ..kind regards di…

Dianne,… “AI” is an abbreviation for “auto-immune.” I’m glad you asked, because we tend to use these short-forms around here and it can be confusing for newcomers, so ask away, if anything is confusing. On the main site, some of the commonly-used abbreviations are listed:

https://www.roadback.org/index.cfm/fuseaction/education.display/display_id/157.html

Di, were there any anomalies in your bloodwork that caused your doc to want to exclude myeloproliferative disorders? As far as I know, these diseases are rare and, depending on the type of issue, are related to how various blood cells grow and develop in the bone marrow (red and white blood cells and platelets). A hematologist would be the perfect sort of doc to figure out if something like this is an issue for you.

Sending you all good wishes for your trip to the hematologist and do hope they can get to the bottom of this for you.

[dianne-sunshinecoast]

hi maz, mainly the the pinpoint red spots getting worse also eosinaphelia, up to 2.77 at the highest. it was mainly at my insistance, to see haematologist, plus i am still on mtx.? i am not going to se that rheumy, but the appt. was made 7mths ago. so thought i would go ahead and see her ? the haematologist i mean to exclude any other probs? … thank you maz… kind regards ..di.

[lynnie_sydney]

Dianne – I’m wondering whether it is worth you being checked out for Lyme. That’s not easy in Australia. However there is a Lyme Literate Naturopathic Doc who lives in the U.S. but who is Australian born and who comes back to visit twice a year. She sees patients over a couple of days when she comes back both in Sydney and in Noosa. She brings Igenex test kits with her for people who want to get tested for Lyme and co-infections by the lab in the U.S. that is the recommended one. As she cant prescribe in Australia, when antibiotics (abx) are in the treatment mix she works with a GP in Noosa. Have a look at her website http://www.restormedicine.com. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[maz.aust]

I think Lynnie it’s the Westmead Hospital who does Ignex testing for Lyme, but your GP/Specialist has to specify exactly what bacteria you are looking for.

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[lynnie_sydney]

I think Lynnie it’s the Westmead Hospital who does Ignex testing for Lyme

No these are separate routes of testing and nothing to do with each other. Westmead is a hospital in Sydney that MAY do Lyme testing privately (i.e not via the medicare system) if requested by a doctor. This is all very new and still having some teething problems. Some people who’ve been dx’d here with Lyme are requesting Westmead testing so that they can compare the results with their Igenex results. If they match, testing here for others will be a much cheaper option, even paying privately. Igenex is a private U.S. lab that is recommended as the one to use by U.S. LLMD’s. Dr McF brings Igenex kits with her when she visits Australia for those who wish to pursue that option. The blood draw needs to be signed off on by a GP (or other doc) and then the actual blood is sent to the U.S. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[maz.aust]

Ok, stand corrected … thanks Lynnie, 😀

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Maz]

dianne-sunshinecoast wrote:

hi maz, mainly the the pinpoint red spots getting worse also eosinaphelia, up to 2.77 at the highest. it was mainly at my insistance, to see haematologist, plus i am still on mtx.? i am not going to se that rheumy, but the appt. was made 7mths ago. so thought i would go ahead and see her ? the haematologist i mean to exclude any other probs?

Quote:

Hi Di,

Eosinophilia (elevated eosinophils) can be a sign of allergy amongst other things. I’m not sure what ref ranges your lab is using, but an elevation of 30% is typical of, for example, an allergy to a tetracyline (info here):

https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-The-51540

However, there are other causes for eosinophilia mentioned at the following link (this may not be a fully comprehensive list), including certain parasitic infections:

http://en.wikipedia.org/wiki/Eosinophilia

The potentials are varied, so it’s a good thing you are checking into this and wise of you to pursue answers – hopefully the hematologist can get to the bottom of this for you. Please let us know how you get on. In the meantime, my thoughts are with you.

[dianne-sunshinecoast]

thank you so much lynnie_sydney, i have been in touch with the president of the lyme disease assoc. president of australia , she has been very helpful too. and has given me the name of a doctor at noosa, however she doesnt think he is taking any new patients? however i will try both avenues and see what happens? … kind regards ..di.

[maz.aust]

Hi Dianne,

I am sure if Nikki can help you she will …

Maz – Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[Author]

Posts