Lyme Results (MAZ?)

[kowens]

Hi Maz, I’ve not posted for a while. Since May 2010, Sclero seemed to have gone into remission with the AP, LDN and anti-inflammatory diet. My titers wen way down ANA 1:640 to 1:80 and Scl-70 from 6.8 to 2.8. However I’ve been feeling awful for the past 10 days and my doc has decided to redo all my baseline studies to look for progression and she is sending me to MCG Augusta for a complete neurology and rhematology workup. The new symptoms on top of profound fatigue are muscle tremors, slurred speech when tired and some loss of balance. My doc has ordered a new Lyme test as well, but I dug up my old results and Christine-2 from Inspire suggested that I run them by you. My test was done by LabCorp. Of the 10 bands tested only one came up positive. The test said that 5 of the bands would need to be positive in order for the test to be positive for Lyme. Only IgG P41 Ab. was present. Does that mean anything to you?

The other thing that I noticed is that I have some swelling & dryness under my left eye and now I’m wondering if my recent flare-up has been a new spot of hardening? As far as I know the only patch of hardening I have is on my right thigh and it covers most the entire front and side of my thigh. However, I’ve just noticed some thickening and darkening of my right forearm…and now my eye is odd. Thankfully I’m going to a dermatologist tomorrow and the rest of the tests should be happening shortly. I’m praying this is just a strange episode and not progression.

Blessings to you all.

[Maz]

@kowens wrote:

My doc has ordered a new Lyme test as well, but I dug up my old results and Christine-2 from Inspire suggested that I run them by you. My test was done by LabCorp. Of the 10 bands tested only one came up positive. The test said that 5 of the bands would need to be positive in order for the test to be positive for Lyme. Only IgG P41 Ab. was present. Does that mean anything to you?

Kim, that was pretty great going to feel like you were in remission from systemic sclero within 10 months! Way to go, girl! 🙂

Sometimes blips will occur along the way and it’s time to reassess and see what might need tweaking. I noticed you’re on quite a low, pulsed dose for SD…100mg QOD. Any reason for this? Most SDers will use the Harvard Protocol and some will also add IV clindamycin on a regular basis to take a more aggressive stance. As SDers tend not to have an inflammatory component to their disease (unless there are overlaps with other rheumatic diseases, which I see you think you may have, questioning UCTD), they can usually tolerate the higher dose very well without herxing. Did you suffer herxing initially and was this the reason for the lower dose? Just wondering…

Re: the Lyme question, the standard lab tests for Lyme are notoriously bad, missing 50% of cases of Lyme. They are missing significant antibody bands (removed during the creation of LymeRix vaccine and never returned to the test). Many of the sickest patients find they do test positive on these missing bands (31 and 34) and these are considered highly specific for Lyme…specific enough that they didn’t want cross-reactivity with the Lyme vaccine! If you have time, it’s worth watching the following video at this link (just scroll down and click play button) and listen to what Dr. H has to say about standard Lyme testing in this respect:

http://www.tribecafilm.com/news-features/features/Watch_Under_Our_Skin_Panel.html

Band 41, which is a significant double-starred antibody band, isn’t all that specific for borreliosis on its own. This is because it is measuring the antibody produced to proteins found on the whip-like tail of borrelia – i.e. there are other spirochetes (e.g. syphilis, oral spirochetes, H. pylori, etc) that also have whip-like tails that express this particular protein. Band 41 does become more important, though, when it shows up in addition to other borrelia-specific bands. To get more sensitive Lyme testing done that includes the missing antibody bands, most folk will be tested privately through IGeneX labs with a basic western blot test (test #188 and 189). Another consideration is that Lyme is highly immune-suppressive. It goes immediately out of the blood stream and into the lymphatics, taking out the body’s immune surveillance ability. Hence, not everyone will show up with enough antibody to test, which is why LLMDs (Lyme Literate MDs) will base a diagnosis upon clinical presentation and patient history, just using tests for a nice confirmation, if positive, but not excluding a Lyme diagnosis if everything else adds up to Lyme. Although I am just a fellow patient, the kinds of neurological symptoms you’re describing are pretty common amongst Lyme patients, which is why they often get misdiagnosed with MS, ALS, Parkinson’s, Alzheimer’s, etc.

It’s easy to have IGeneX testing run, if you can find an open physician willing to sign off on the labs for you. After all, it is your choice to spend the money, if you decide to do this. Again, though, a positive Lyme test is not required for a Lyme diagnosis if the clinical picture and history fits. The CDC requires 5 bands positive on a western blot for a positive result, whereas only 2 double-starred bands are required on IGeneX western blot for a positive. Double-starred bands are considered so specific to Lyme they can be due to nothing else. There are rare instances where some cross-reactivity can occur…e.g. band 31 may cross-react with certain viruses, but there is a further etiope test that can be run, if needed, for confirmation.

Another major consideration with Lyme is that it’s usually not just Lyme when one is infected, but a whole boatload of other tickborne coinfections (e.g. babesiosis, bartonellosis, erhlichiosis, anaplasmosis, various viruses, etc) and possible reactivation of latent (past) infections due to the immune-suppressive effects of Lyme. In some cases, monotherapy with just one abx isn’t enough and a combination therapy is needed. This is where working with an experienced LLMD is invaluable. Whatever else is added to a SDer’s abx protocol, however, keeping minocycline as the central therapy is vital, as it has such great immune-modulating and disease-modifying effects in addition to anti-microbial properties. Thing is, untreated coinfections tend to leave patients sick. 🙁

Interestingly, there has been research tying H. Pylori (the spirochetal infection that causes stomach ulcers) to scleroderma, too. A similar organism, a LLMD would be the type of doctor who could treat this effectively with longterm abx. Worth getting tested for this infection, too, which, like Lyme, would require combination abx therapy.

http://www.ncbi.nlm.nih.gov/pubmed/21145276

http://www.ncbi.nlm.nih.gov/pubmed/21158008

http://www.ncbi.nlm.nih.gov/pubmed/20863912

Kim, you sound like you’re doing lots of good things to support your abx therapy. What are you also doing in the way of detoxing and gut healing? Have you excluded gluten from your diet? Had a good thyroid work-up lately? Any probs with candida? Are you working with an experienced, supportive physician?

[kowens]

Hi Maz, thank you so much for that info. I will ask my doc to order the Igenix test for me. I will watch the videos and check out the links you suggested too. As for the anti-inflammatory diet, it is gluten-free, dairy-free, and sugar-free so it does wipe out most causes of yeast overgrowth. I also take a probiotic and Nystatin (but my new doc wants to cut the Nystatin out). In addition to being anti-inflammatory I find that this diet cuts out most foods that tend to cause auto-immune symptoms.

Initially I was having a lot of joint pain, but thankfully, that is no longer the case. I’ve never tested for any signs of inflammation. My doc suggested this diet early on and it just seemed to work for me, but I’m open to other suggestions. Is there another diet that youd suggest?

I started out on 100mgs of mino every day along with 4.5mgs of LDN and when I got well, I dropped to a “maintenance dose” of mino. I never had any bad symptoms from the antibiotics. Perhaps I should consider going back up to 100mgs per day? I believe that the full Harvard dose is 100mgs 2xday. Is that correct? I’ve never taken that much. It’s been so long since I read all the dosage info, I can’t really remember. My environmental doc was open to the anti-biotic treatment, but his real LOVE is LDN therapy so I do both. Since I’ve been on both drugs since the beginning it is really impossible for me to know which one is giving me the most benefits.

I tested negative for Strep. All my bloodwork is perfect, inlcluding Vit D except for the dreaded SCL-70 and positive ANA. My grandmother had a terrible case of rheumatoid arthritis. Other than that, I’m not really sure why my rheumy still calls this UCTD. My new internist “fired” him because she said that in her opinion my case is clearly sclero. She’s sending me to MCG for confirmation. She insists I need a clear and proper diagnosis. My environmental doc has always called this sclero based upon the large area of morphia on my thigh, my digestive/swallowing/reflux issues, my fatigue and my labs.

I’ll keep you updated on the results of my new testing. Thanks again! God bless!

[Maz]

@kowens wrote:

Initially I was having a lot of joint pain, but thankfully, that is no longer the case. I’ve never tested for any signs of inflammation. My doc suggested this diet early on and it just seemed to work for me, but I’m open to other suggestions. Is there another diet that youd suggest?

I started out on 100mgs of mino every day along with 4.5mgs of LDN and when I got well, I dropped to a “maintenance dose” of mino. I never had any bad symptoms from the antibiotics. Perhaps I should consider going back up to 100mgs per day? I believe that the full Harvard dose is 100mgs 2xday. Is that correct? I’ve never taken that much. It’s been so long since I read all the dosage info, I can’t really remember. My environmental doc was open to the anti-biotic treatment, but his real LOVE is LDN therapy so I do both. Since I’ve been on both drugs since the beginning it is really impossible for me to know which one is giving me the most benefits.

Hi Kim,

I bolded the bits above in your post that stood out to me while reading. LDN can be greatly supportive for “autoimmune” disease, but there are just too many SDers who find remission on minocycline alone that I can’t help but place my bets on mino being what turns it around….especially in light of returning symptoms for you when your mino dose was reduced to a maintenance dose. In the case of SD, it seems that most will remain on their Harvard Protocol for life, just to prevent a return of symptoms down the road. Others will hold their remission with Harvard Protocol for a good long period of time of a year or more before attempting to lower to a maintenance dose. Just can’t help but wonder if your dose might have been lowered too early. It can take years for a person’s immune system to crash and for rheumatic disease to develop and so it would make sense that it would take a good long period of time to rectify the damage to the body, even if overt symptoms seem to have abated. It’s fantastic that you maintained your diet and everything else you’ve been doing to try to maintain remission, but it might just be that lowering your mino dose too early has something to do with this. Another question that came to mind after my last post was to ask if you might have changed from brand to generic or just changed generics. Sometimes this alone can upset a person’s remissive state. All in all, when taking into account that the Harvard Protocol isn’t much different from the dose your average teen will take for acne, it’s not a heavy protocol to be on (as compared to conventional alternatives for SD). So, sticking with a higher daily dose for a good year or longer after full resolution of symptoms before attempting to lower AP dose is just a good way of playing it safe.

So many SDers are finding Lyme (the syndrome) is playing a part in their disease that getting tested thru IGeneX if standard tests are iffy is just a good precaution from the outset. It can also help determine what type of doc to see…AP or LLMD which can save a lot of time further down the road. Your doc may not have their testing kits in his/her office. To order a kit, just call the lab and they mail them directly to your home. It comes complete with all the necessary paperwork to fill out and you just check off the labs you’re ordering and have the doc sign off on the lab requisition. Then, the kit is taken to the local Quest or LabCorp (unless the doc does in-office blood draws) and have them draw and process the blood sample for packing in the kit. Then, just add your check to the kit and stick everything in the provided return mailer and drop off at the local FedEx or UPS store (can’t remember which).Results get returned to the ordering physician about 3 weeks later and it’s important to get hard copies of results, because unless the doc is Lyme Literate they will likely not be conversant in reading the results. We have links to help with interpretation when you receive your hard copy results, if that helps.

Kim, hope that helps! Please come back and let your RBF family know how you get on. 🙂

[kowens]

Hey Maz, I visited my local internist again today and she put me on “medical leave” from work until I see this doctor at MCG Augusta (moved up to Aug 26th). I’m going to lay low and rest until that visit. I look forward to seeing if they think this is progression or a fluke. I’m praying that I begin to feel better. I’ve felt really well since May of 2010, so I’m hoping this will pass quickly without too many changes needing to be made. I’ll keep you posted on what I learn from her. Blessings!

[Maz]

@kowens wrote:

I’m going to lay low and rest until that visit. I look forward to seeing if they think this is progression or a fluke. I’m praying that I begin to feel better. I’ve felt really well since May of 2010, so I’m hoping this will pass quickly without too many changes needing to be made. I’ll keep you posted on what I learn from her.

Thanks, Kim…till then, I’ll keep you in my thoughts. Rest well and be well…and please come back and let us know what you discover. Hopefully, this is just a passing blip on the radar.

[vonni]

Kim,

Once you get the IGenex testing done and go to an LLMD, make sure you get tested for the coinfections, which could account for some of your symptoms. I have been treating for all of these and today I am doing so well.

[kowens]

Thanks Maz, I will be at MCG Augusta on Monday. Do you know of any one who has been treated there? Also, I saw my gyn today and she told me I am in complete menopause (quickly/unexpectedly at my age) and that it is most likely due to the autoimmune disease — really? She said that when the immune system is constantly stressed on high-alert the body shuts down its ability to conceive as a self-preservation tactic. I had no idea this was another possiblity…so now in addition to osteopenia I’ve also added menopause to the list of what this autoimmune stuff has done to me. Lovely. I am so ready to feel better. I’ve been in bed going on 3 weeks now. Everytime I think I have enough energy to get up and interact with the world I end up in tears and back in bed. I spoke to my doc about that. I don’t think I’m depressed, but I am tired of being tired. I was not depressed going into this flareup…and I have hope that I will feel better shortly…but it seems that interacting at any normal level leaves me totally depleted — mentally, physically & spiritually. I am back on my hard core diet. I’ve gone beyond the anti-inflammatory onto the Daniel Fast (only water and food that started as a seed…) I thank you for this site and all the support and expertise. Blessings!

[Maz]

@kowens wrote:

Thanks Maz, I will be at MCG Augusta on Monday. Do you know of any one who has been treated there?

Also, I saw my gyn today and she told me I am in complete menopause (quickly/unexpectedly at my age) and that it is most likely due to the autoimmune disease — really?

I am so ready to feel better. I’ve been in bed going on 3 weeks now. Everytime I think I have enough energy to get up and interact with the world I end up in tears and back in bed. I spoke to my doc about that. I don’t think I’m depressed, but I am tired of being tired.

Kim, so sorry, but haven’t heard from anyone who has visited Medical College GA here. Maybe someone can chime in, if they have for you. That said, though, I really hope your visit tomorrow goes well for you and that you get out of the visit what you hope to get.

Not sure of your age, but the average age for menopause is around 51….some women earlier, some later. I think to some extent your doctor is probably right that a stressed body (and immune system) will shut down organs that aren’t needed to sustain life. I remember biology classes as school where this was discussed. Certainly, women with rheumatic diseases tend to suffer from endocrine anomalies and, if not ovarian endocrine anomalies, then thyroid and/or adrenal and sometimes pancreatic (diabetes) disorders. While at the MCG, it might not be a bad idea to ask them to assess you for hypothyroidism and Grave’s disease, though your doc may have already done this. Chemotherapeutic agents, such as methotrexate might also be a cause of premature menopause.

Feeling so rough, it wouldn’t be at all surprising if one felt depressed – life as you know it has come crashing down around you. I’ve been there and know how being bed-ridden in excruciating pain can make you feel. Am sure many here can relate, too. Inflammatory cytokines alone can cause chemical messages in the brain to go screwy and cause depression.

Hang in there, Kim…hopefully you will find some answers to all this and, if MCG Augusta is unable to come up with anything new for you and all corners have been covered from the conventional standpoint, then it may be time to go back to the drawing board and look at what else might need addressing from another standpoint. There is usually always a key to this stuff and finding that key may just take some less conventional detective work. 😉

Please come back and let us know how you get on – you’ll be in my thoughts.

[Lynne G.SD]

Hi Kim;
I told you that Maz was the greatest and I bet you now agree.From my point of view I really think you should have your Lyme testing done before spending any other money as that will determine which protocol you will be using..I wasted a full decade on AP as I did not know I had Lyme.
I saw my doctor last week and she wants to confirm everything with a CD57,56 and 16 test.
MAZ: You saw my doc in the movie Under our Skin .Remerber the segment where several people just make a quick appearence and say they also have Lyme. She was the second,third or fourth to say it(can’t quite remember)There were 2 pretty blonds,she was the first.Considering the people she hangs out with ,I will not doubt her abilities.

[Maz]

@Lynne G./SD wrote:

MAZ: You saw my doc in the movie Under our Skin .Remerber the segment where several people just make a quick appearence and say they also have Lyme. She was the second,third or fourth to say it(can’t quite remember)There were 2 pretty blonds,she was the first.Considering the people she hangs out with ,I will not doubt her abilities.

Lynne, so kind of you. 😳

I didn’t know your doc had a cameo appearance in Under Our Skin! She is going to be speaking at the next ILADs conference in Toronto next month. Will you be attending? Canada sure does need some ILADs-trained physicians on board – hopefully this conference will be well-attended by some inquisitive and open Canadian physicians.

http://www.ilads.org/lyme_programs/lyme_events.html

Kim, in case you haven’t seen the movie to which Lynne is referring, here it the link to stream it for free on your computer – very worth watching and should help answer some of the burning questions we all have initially about why Lyme has become so controversial in medicine today:

http://www.hulu.com/watch/268761/under-our-skin

Hoping your appt went okay today!

[kowens]

Just got back from MCG Augusta. Met with the head of rheumatology. They reviewed my records and my current symptoms and brought in 5 people to look at me. They are afraid that perhaps my initial autoimmune disease (be it sclero or UCTD) has developed into a different autoimmune disease either ALS or MS. They are setting me up for some “urgent” neuro testing in the next few days.

Do you think I should take the Lyme tests before submitting to these “painful” nerve tests??? I’ve been tested for Lyme 2x thru Lab Corp, but I understand that that test is not necessarily good. My dad wants me to skip everything at MCG and go straight to Mayo.

LONG/BAD day. Thanks to everyone for your support. Blessings!

[Maz]

@kowens wrote:

Just got back from MCG Augusta. Met with the head of rheumatology. They reviewed my records and my current symptoms and brought in 5 people to look at me. They are afraid that perhaps my initial autoimmune disease (be it sclero or UCTD) has developed into a different autoimmune disease either ALS or MS. They are setting me up for some “urgent” neuro testing in the next few days.

Do you think I should take the Lyme tests before submitting to these “painful” nerve tests??? I’ve been tested for Lyme 2x thru Lab Corp, but I understand that that test is not necessarily good. My dad wants me to skip everything at MCG and go straight to Mayo.

Kim, you poor thing…what an exhausting, emotion-filled day you must have just been through. I think you should probably just take a day or two to breathe again and then really spend some time figuring out your next steps and what makes sense to you, getting as informed as possible and not falling into fear over any alarming potentials. My brother has MS and, not unlike rheumatic diseases, there is no conventional “cure.” Getting a diagnosis can be important, so having tests run may be wise at this stage, whether from Mayo or MCG Augusta, but the conventional treatment path for any “autoimmune” disease is basically the same approach, as all these diseases are considered “idiopathic” (no known cause), regardless of diagnosis.

So, figuring out what you have and receiving a “label” can be enlightening at best and help to explain the symptoms you’re having, but the next step that will be important for you to decide for yourself (by getting as informed as possible) is whether infectious theory makes sense to you – whether it’s scleroderma, UCTD, MS, ALS or any other label – or whether you will choose to follow conventional standards of care for your ultimate “autoimmune” diagnosis.

Lyme has the capacity to mimic everything under the sun, without doubt, so getting the more sensitive IGeneX testing run, as mentioned above might not be a bad next step (yes, you’re right, standard Lyme testing is wholly inadequate and only 50% of those tested with Lyme will get a positive result by CDC standards – I had two bulls-eye rashes and still tested negative on Quest standard testing). The IGeneX test will likely only tell you whether or not Lyme is a possibility (some antibody bands are so specific to Lyme it can be due to nothing else), but as the others mentioned above, there are other associated tick-borne coinfections that will also keep people sick…and coinfection testing is not as accurate as one would hope either. Therefore, getting assessed by a really good ILADs-trained Lyme Literate MD (LLMD) is something to consider, tests or no tests. When you have recovered a bit from your day, would therefore suggest watching the movie (link posted above) to get an idea of the whole Lyme thing…how it affects people, the politics, why it takes so long for some folk to get a real diagnosis, and the docs on the front lines who are treating it (and being targeted for doing so).

I’d also suggest reading a copy of “Cure Unknown,” which covers the story of an ILADs physician who was struck down by ALS and, after receiving appropriate Lyme treatments, recovered.

http://www.cureunknown.com

Would also suggest listening to the following audio interview of one of RBF’s AP docs who is also a LLMD talk about what he thinks is the “Premier Pathogen,” in treating inflammatory diseases – both rheumatic and neurological.

http://www.blogtalkradio.com/pamcrane/2011/05/19/1-step-blood-test-discovers-protozoa-under-biofilm-structure

That’s probably more than your brain can probably take in for a few days, Kim…so take things slowly. You don’t need to race, but just take a measured response of little steps. So try not to get ahead of yourself or fear will just overwhelm you. If I can offer any further insight from a patient perspective and as a person with a brother who has MS and the journey he has taken, I’d be very happy to chat more, either here on in person by phone. Just let me know.

[vonni]

Kim,

I totally agree with having IGenex do the lyme testing–my lyme disease was missed by Mayo Clinic and a local lab. A year after scleroderma reared it’s ugly head I had the testing with IGenex and began treatment for lyme. After I went to an LLMD, I had testing through Lab Corp for coinfections. By that time, the CD-57 showed that my immune system had crashed. If I had not pushed for the lyme testing, I truly believe I would not have recovered to the state of wellness I am now in. I virtually have no residual of lyme or scleroderma and my energy level has completely returned. This is no small feat considering where I was. All I can do now is try to help others who are where I once was by sharing my experience. It is the least I can do for what I have been given. Kim, please keep us posted. My thoughts and prayers are with you.

Vonni

[kowens]

Thank you everyone. I just visited Igenix web site. Just to be sure, is it the INITIAL PANEL that I want to order?

[Author]

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