ANA Test Results & Also Hypothyroidism

[jelretiredmama]

Had my 2nd set of ANA tests done in Nov. The first tests (done in Jan 2012) showed Nuclear Antibodiues Nuclear Ab Nucleolar pattern as positive with a titre of 1:640. All other tests negative. Started Tetracycline mid Sept at 250 mg MWF. Nov test results now show a title of 1:160. All other tests negative. If I understand this correctly, this would indicate an improvement. Not sure however, what it means when they show (titre >= 1:160 or nucleolar >= 1:1280. Appreciate comments.

Also, in Nov, my Thyroid levels indicated hypothyroidism. Levels had gone from high normal of between 4 and 5 June for the TSH to 12. Retested in Dec and it was down to 10. Has anyone else experienced low thyroid issues when on AP? This may be because of the flare I had late summer early fall before going on AP. Just curious as this caught me by surprise.

Best Wishes for Good and Improved Health to Everyone in 2013!

[Maz]

@jelretiredmama wrote:

Had my 2nd set of ANA tests done in Nov. The first tests (done in Jan 2012) showed Nuclear Antibodiues Nuclear Ab Nucleolar pattern as positive with a titre of 1:640. All other tests negative. Started Tetracycline mid Sept at 250 mg MWF. Nov test results now show a title of 1:160. All other tests negative. If I understand this correctly, this would indicate an improvement. Not sure however, what it means when they show (titre >= 1:160 or nucleolar >= 1:1280. Appreciate comments.

Also, in Nov, my Thyroid levels indicated hypothyroidism. Levels had gone from high normal of between 4 and 5 June for the TSH to 12. Retested in Dec and it was down to 10. Has anyone else experienced low thyroid issues when on AP? This may be because of the flare I had late summer early fall before going on AP. Just curious as this caught me by surprise.

Hi Jelretiredmama and a warm welcome to you! 🙂

Sounds like you’ve got off to a fine start on AP and that your labs are definitely going in the right direction dropping by 3 dilutions in just 4 short months! As you may already know, ANA is measured in dilutions that double with each dilution…e.g. 80, then 160 then 320 then 640,then 1280 etc. Not sure which lab you used or how they present their results, so not really clear on what “titre >= 1:160 or nucleolar >= 1:1280” means, unless it is part of some reference range? Perhaps your doctor can explain this to you? I’d be interested to know what you discover on this…or perhaps someone here has seen this before and can enlighten us.

Thyroid issues are a really common overlap with “autoimmune” diseases and it’s not likely that a tetracycline abx would initiate a thyroid problem, though possible that it may reveal an underlying issue by way of a herx response. Scleroderma is one of those diseases that can target all sorts of tissues in the body and there is some literature out there suggesting that gluten intolerance (gliadin antibodies) can result in attacks on the thyroid, which have similar cellular keys. Interestingly, many SD patients find it helps in their progress to also eliminate gluten from their diets.

http://chriskresser.com/the-gluten-thyroid-connection

There is also some research suggesting that doxycycline, another tetracycline derivative, is helpful in thyroid disease that may be caused by an organism, called yersinia enterocolitica:

http://thyroid.about.com/cs/hashimotos/a/antibiotics.htm

Are you working with an experienced AP Physician, Jelretiredmama? Just wondering, as you are using the pulsing method, as Brown described. In the case of SD, the usual approach is to take minocycline 100mg BID, but others have done very well on tetracycline, doxycycline or minocycline. Minocycline tends to be the preferred abx due to its superior lipid solubility, allowing for better tissue penetration and swifter results.

The good news is that it sounds like you got on to to this very quickly and started therapy soon after your diagnosis and this bodes well for a good response and recovery. 🙂 Sometimes labs can wobble around for a while (sometimes even the ANA pattern will morph making a clear-cut diagnosis a challenge) until some stasis is reached and disease progression begins to regress, but seeing labs moving in the right direction this early is a wonderful thing.

Glad you joined us, Jelretiredmama! 🙂

[jelretiredmama]

Hi Maz

Thanks so much for your reply. I thank God for directing me to this website as I truly believe I was deteriorating quite rapidly this past fall. I was diagnosed in Jan 2012 but I have probably been struggling with various issues for the past 10 years. The clue for the diagnosis was calcinosis in several of my fingers. I think I was infected with some kind of a bug bite as I originally developed a fungal like lesion on my chest. Results first thought it was scleromyexedema, but then 2nd test resulted in “unknown”. My digestive system slowed and I had pressure in my upper right quadrant of my abdomen. I kept thinking it was related to my gall bladder. All tests from top to bottom all good. I believe it was the sclero / bacteria / parasitic infection. Looking back, also had hardening, waxing and itchy abdomen which cleared up shortly after going on antibiotics for diarrhea in 2006. I’ve read where Morphea sometimes just goes away on its own, but I think it had to do with the antibiotics at the time.

My digestion system basically stopped functioning this past spring. The gastro doc just wasn’t coming up with viable solutions (although he didn’t know I had sclero). Went to a Naturopath (who has Lupus) and she got my digestive system working — best ever!

Started going for laser treatments on my hands in the summer to help with the pain from Raynauds and calcinosis — which it has done. However, I have a theory — the laser treatment promotes angiogenesis (good thing for the blood vessels) and also promotes chelation – which I was hoping would break down the calcinosis where I believe bacteria is hiding. So my theory is that the laser was breaking down the calcinosis and releasing the mycoplasma into my system thus creating a big flare in late summer / early fall. I went to see my family doctor and asked for the tetracycline (I knew I was ok with it from previous experience years ago). Started on it mid Sept after feeling like my body was dying. This was a different feeling than “feeling sick”. Within about 1 week, I could feel my body start to come alive — with herxes of course.

Am under the care of a Rheumy – but he won’t prescribe the AP. I have to get it from my family doctor. I have been giving him material on AP and loaned him a couple of the books. Although my Rheumy is a caring doctor, I am disappointed that he won’t consider AP. I know my Naturopath is also interested in this treatment.

Haven’t been tested for lyme yet, but am considering having it done. Will go the traditional testing first and also ask for igg and igm. Also will probably switch to minocin when the tetracycline runs out.

Thank you again for your reply. This website / forum is such an enormous help!

Again, best in 2013!

[Maz]

@jelretiredmama wrote:

I think I was infected with some kind of a bug bite as I originally developed a fungal like lesion on my chest. Results first thought it was scleromyexedema, but then 2nd test resulted in “unknown”.

Haven’t been tested for lyme yet, but am considering having it done. Will go the traditional testing first and also ask for igg and igm. Also will probably switch to minocin when the tetracycline runs out.

Jelretiredmama, after reading the first bit of your post re: the bug bite and rash on your chest, it was hard not to draw the same conclusion as you – Lyme. So many SDers are writing to RBF now and mentioning that they are testing positive for Lyme or have had an EM rash or had previous tick bites or tested positive for some tickborne coinfection…the correlation to LDC (lyme disease complex) is just getting stronger and stronger. It makes little sense that when a patient is reporting a bug bite and rash that is causing such a wide array of confounding symptoms that doctors are not picking up on this connection. 😮

The good part is that you’re feeling better, but if this is Lyme, you will likely need to see a Lyme Literate MD to ensure that all coinfection corners are covered and that you’re receiving adequate treatment for the Lyme. Borrelia is a tricky organism that morphs into different forms that require separate treatment. Here is a video showing how the spirochete reverts to dormant cystic form:

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

These dormant cysts have reduced outer surface proteins and when treatment is inadequate these cystic forms proliferate and can remain dormant for a very long time. This may account for why folks begin to feel better, stop treatment and then relapse. At a recent Lyme conference in Boston that I was fortunate to attend, Dr. Eva Sapi, a Lyme researcher at New Haven Uni in CT gave a presentation on how Lyme forms biofilm to protect itself. Unfortunately, I can’t find her slide presentation on the ILADs website (http://www.ilads.org/lyme_programs/ilads-live/slides.php) but suffice to say that the takeaway message is that biofilm formation is another strategy by which Lyme avoids immune surveillance. Needless to say, stanadard testing, which looks for antibodies that the body produces in response to this tricky bug is notoriously bad as a result. Further, in a poster presentation given by Ms. Sapi’s doctoral student demonstrated that low dose doxycycline therapy actually pushed borrelia into biofilms. So, there is a strong case for higher dosing and combination protocols to hit all the various forms, as well as to do some biofilm-busting. This is not to concern you, but just to emphasize the importance of seeing an experienced Lyme Literate MD (LLMD) to ensure appropriate treatment. Also, the preferred lab of LLMDs is IGeneX out in CA (http://www.IGeneX.com), so if your standard labs are equivocal or negative, it’s worth seeking out further testing by having an IGeneX western blot run, as this test is considered more sensitive and also contains more antibody bands specific to borreliosis. If you ultimately decide to get tested through this lab, then it’s easy to just put in a call to them and ask them to mail you a testing kit, which includes everything needed to perform the test, though a doctor will need to sign off on the lab requisition. IGeneX basic Western Blot is test #s 188 and 189 (IgM and IgG). We can help with further insight on how to go about this and links on how to interpret results, if needed. Ultimately, though, a diagnosis can’t be made on just tests, but should include a full clinical work-up and a diagnosis based on patient history (tick exposures, living/visiting lyme endemic region, rashes, etc), signs/symptoms and supportive labs.

For further research, you may find the ILADs and Burrascano Diagnostic and Treatment Guidelines worth reading through:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

There is a lot of excellent info on the ILADs website for anyone who is concerned about a possible Lyme connection.

You may also like to read the testimonial of Vonnie, who also had SD and discovered later on that it was caused by Lyme disease (now being dubbed MSIDs or mixed systemic infectious diseases syndrome as ticks, “nature’s dirty needles,” can pass a veritable Russian Doll cocktail more than just Lyme).

Hope something here will help you further in your researches.

https://www.roadback.org/index.cfm/fuseaction/community.display/display_id/510.html

Thank you for your kind wishes and hope you also have a wonderful 2013, Jelretiredmama, and that this new year brings you renewed health and happiness! 🙂

[jelretiredmama]

Again Maz – thank you for this fabulous and extensive information. I have heard about the Igenex lab / testing. It is available through my Naturopath’s clinic, but also very expensive. Please note, I am not putting a price on my health — just thinking I should exhaust whatever testing is available through our Public Health here in Canada. Testing at these labs for Lyme is not as accurate but perhaps worth a try to begin with. I had also emailed contacts on http://www.canlyme.com to see what Lyme literat doctors are close by, but have not had a response. Next step will be to place a call to one of the contacts listed. Am also very curious about this because Lyme mimics so many other diseases. One of my Aunt’s and my paternal Grandmother both died of ALS. I can help but wonder if they were really dealing with Lyme and therefore suffered a horrible death needlessly.

Meant to mention that I had asked my Rheumy as to why SD patients are automatically tested for lyme. Answer was they are not related. I still think they are! Time will tell!

Will sign off for now. Wishing you and everyone a healthier and happier 2013!

God Bless!

[cavalier]

Any disease that takes down the immune system such as lyme certainly can open the door for other diseases due to the impaired immune system as well as coinfections. This is where so many doctors just cant see the forest thru the trees. Since lyme is the great imitator and is known for thickening the blood it is of little wonder that another disease SD which thickens blood is named & into being. Whether they are 2 separate diseases or from one central cause it matters little to me – but rather one MUST address all coinfectionns if one is going to get better & treat the body.

Jill Lyme & SD, CPn

[Maz]

@jelretiredmama wrote:

I have heard about the Igenex lab / testing. It is available through my Naturopath’s clinic, but also very expensive. Please note, I am not putting a price on my health — just thinking I should exhaust whatever testing is available through our Public Health here in Canada. Testing at these labs for Lyme is not as accurate but perhaps worth a try to begin with. I had also emailed contacts on http://www.canlyme.com to see what Lyme literat doctors are close by, but have not had a response. Next step will be to place a call to one of the contacts listed. Am also very curious about this because Lyme mimics so many other diseases. One of my Aunt’s and my paternal Grandmother both died of ALS. I can help but wonder if they were really dealing with Lyme and therefore suffered a horrible death needlessly.

Meant to mention that I had asked my Rheumy as to why SD patients are automatically tested for lyme. Answer was they are not related. I still think they are! Time will tell!

Jelretiredmama, your idea to get standard testing first makes very good sense and lots of folks will do this, recognizing that getting a CDC positive (Canada follows US guidelines on testing) can save money on the IGeneX testing. It sounds like you’re pretty “au fait” with all this already, so you’re on the right track.

If you’re out in BC, there is a really good Lyme Literate MD I can share with you. There is a forum user here, Kater, who sees this doc for her SD, which is now close to remisison. 🙂 Unfortunately, Canada has a real shortage of LLMDs, though. I hope the CanLyme folks get back to you soon…the delay may just be due to the holidays. If not, you can also try the Tickborne Diseases Alliance, because these Lyme Literate advocacy groups usually retain lists worldwide.

http://tbdalliance.org/diagnosing-tbds/find-a-medical-professional

The LDA also has an automated physician referral service, though haven’t tried searching for Canada on this one myself:

http://lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

Some Canucks will come down to the US for treatment by an LLMD, so if this winds up being something you’re looking to do, then we do retain LLMD lists by state.

I’ve heard all kinds of stories about why SDers test positive for Lyme…one being, “SDers test positive for everything!” Well, the truth is that western blot testing is looking for antibodies produced by a person to specific to proteins (antigens) produced by spirochetes. Some antibody bands are are so specific to Lyme antigens they can be due to nothing else…so that one really doesn’t wash! 🙄 A person would not be producing antibodies to a specific antigen unless they were exposed to it. At a recent ILADs conference, several LLMDs stated that just one antibody band specific to Lyme was enough to be concerned that a patient likely has Lyme when presenting with Lyme-like symptoms. Another consideration is that immune-compromised folks (Lymies and, especially those coinfected with babesiosis, can wind up being highly immune-suppressed) usually can’t mount enough of an immune response to test positive for anything. So, when some borrelia-specific antibody bands show up in someone who is pretty sick or has autoimmune manifestations, then this needs to be taken seriously.

That’s great that your ND has the IGeneX testing kits in the office! That’s a good sign…if you’re out west, then NDs are allowed to rx abx, too, unlike in other provinces yet, so maybe the ND will even consider treating you as per ILADs guidelines, if so.

So sorry to hear about your relatives passing from ALS. This is such a rare disease that to have two close relatives pass from it is quite unusual. There is quite a bit of literature out there on the connection of Lyme and ALS and there is a now-retired doctor who practiced out in Colorado who was also close to passing from it and, when he started receiving treatment for Lyme, he made a good recovery. You may have seen his story?

http://lymedisease.org/news/touchedbylyme/372.html

[jelretiredmama]

Thank you again! More good reading to digest!

[Author]

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