Lyme feedback please

[Boris]

I am hoping the folks that are lyme literate may be able to share your insight and or opinion with me. I’ve been diagnosed with MCTD 7 months ago, however my blood tests and most of my symptons show limited systemic scleroderma. My major complaint is muscle stiffness, joint pain and Raynauds. Recently I tested for lyme and only band 41 was reactive for borrelia burgdorferi. I followed up with a CD57 test last week and the result was 58. I’m working with my homeopathic doctor on this and today I took other tests for microplasma, Epstein Barr and Mono. I’m in my 5th month of minocycline 100MG per day. Does doxycycline work better to combat borreilia burgdorferi than minocycline? If so would you suggest alternating the antibiotics, or do further test for lyme first?

[Maz]

@Boris wrote:

I am hoping the folks that are lyme literate may be able to share your insight and or opinion with me. I’ve been diagnosed with MCTD 7 months ago, however my blood tests and most of my symptons show limited systemic scleroderma. My major complaint is muscle stiffness, joint pain and Raynauds. Recently I tested for lyme and only band 41 was reactive for borrelia burgdorferi. I followed up with a CD57 test last week and the result was 58. I’m working with my homeopathic doctor on this and today I took other tests for microplasma, Epstein Barr and Mono. I’m in my 5th month of minocycline 100MG per day. Does doxycycline work better to combat borreilia burgdorferi than minocycline? If so would you suggest alternating the antibiotics, or do further test for lyme first?

Hi Boris,

Can you share which lab you tested through for Lyme? Were tickbourne confections tested?

Your result on CD 57 is quite low, which could be indicative of why you’re unable to mount enough antibody to test on the indirect Lyme tests. Here is a schpiel on what the CD57 means. The author works with a top LLMD on the west coast.

http://www.researchednutritionals.com/information.cfm?ID=200

Usually, LLMDs prefer to use much higher doses of tetras, along with a cyst buster and another abx to target cell-walled forms. E.g. Doxy, zith or biaxin, and plaqueil. This is because Lyme is highly pleomorphic, shape shifting and cloaking itself from the immune system when under attack. Side benefits are prevention of drug resistance and also targeting confections in a broad sweep. Doxy is usually preferred because mino in higher doses comes with more potential for side effects, such as vestibular symptoms and hyperpigmentation. So, as doxy is similar in dosing (100mg doxy = 100mg mino = 250mg tetracycline), either doxy or tetracycline is used to get up to serum levels needed to kill and disable borrelia. Doxy can be harder on stomach (nausea), so it can take time to find the right brand. I used Doryx and was fine on that, but it might not suit someone with reflux, as tetras can burn the esophagus.

Sometimes it’s more about what a person can tolerate in terms of dosing, but working with an experienced LLMD can make a world of difference as they’ve seen and dealt with it all.

Hope this helps a bit?

[Boris]

Hello Maz!
Thank you for your reply. I tested for LD through Qwest and then had followed up with a CD57 test through LabCorp.
I should probably follow through with the lyme tests through Ignex?
I remember seven months ago when I first joined roadback discussion forum you had advised me to test for LD! I should have done it then. The tests are helpful not only to rule in or out LD but also will specify types of bacteria found.

[Maz]

@Boris wrote:

Thank you for your reply. I tested for LD through Qwest and then had followed up with a CD57 test through LabCorp.
I should probably follow through with the lyme tests through Ignex?
I remember seven months ago when I first joined roadback discussion forum you had advised me to test for LD! I should have done it then. The tests are helpful not only to rule in or out LD but also will specify types of bacteria found.

Hi Boris,

Standard two-tiered testing is notoriously bad for diagnosing Lyme. These are indirect antibody tests that rely on testing a person’s immune system response to the organism and often, if a person is immune-compromised, or for other reasons, they won’t be able to produce enough antibody for a test. This is why LLMDs view standard Lyme testing as nice confirmation, if positive, but it’s not excluded if a person has a history of tick bites, living in/visiting an endemic region, has symptoms suggestive of tick-borne infections, supporting labs suggestive of infections, etc. It’s a full clinical picture in other words and their view is that it is far safer to treat with therapeutic probing to gauge response than to leave a patient sick and getting worse.

The following discussion and the links in it might help you to unravel what has been going on, but if you need further resources, I’d be happy to share them with you.

viewtopic.php?f=1&t=12859

IGeneX western blot is considered to be more sensitive/specific, because in includes antibody bands that were removed for various reasons, including the manufacture of LymeRix vaccine that with withdrawn from the market in the late 90s as it was causing rheumatic disease in those with certain genetic haplotypes. It was created from the Outer Surface Protein A (OSP A) of the Lyme spirochete, but this antibody band (Band 31) was removed from standard testing as they didn’t want cross-reactivity with this late stage Lyme antibody on anyone receiving the vaccine and showing up false positive. This antibody band never got returned to the standard test and it’s likely because they are now re-inventing the exact same vaccine with a new name. Moral of the story…if you have rheumatic disease or certain genetic haplotypes, avoid the new Lyme vaccine. Band 34 is also pretty significant (OSP B) and this was also removed from the standard test. I think they are also trying to create a vaccine from OSP C (Band 39), so let’s see if that one gets removed, too. Band 39 and 41 were the only ones I tested positive for on IgG (past infection), along with an indeterminate on Bands 23-25, along with Band 31 on IgM (present infection). I had two bulls-eye rashes, which are definitive for Lyme, but less than 50% of folks ever see a rash or get an atypical rash that is misdiagnosed as a spider bite or just ignored.

http://www.anapsid.org/lyme/wb.html

Unfortunately, no test is accurate enough to rule out Lyme, even the IGeneX tests, which is why, in many cases, LLMDs must assess the person and do a full clinical work-up in order to discern if Lyme and/or other tick-borne coinfections and latent, reactivated infections are creating the illness. It’s why “Lyme” is now being dubbed, “MSIDS,” or “mixed systemic infectious diseases syndrome,” because when people get very sick, it is usually not just Lyme that is the problem, but a myriad of infections that become opportunistic, as Lyme is so clever at taking out immune function.

I know all this must be very overwhelming and confusing, but the more you read and become informed, over time it will all make better sense. The problem with Lyme is that it has become one of the most hotly debated and controversial diseases of our times, with two medical societies battling it out (IDSA vs ILADs).

If you watch the movie, Under Our Skin, you can learn about all this and should make better sense:

http://www.hulu.com/watch/268761

Very best to you, Boris, as you navigate all this. We’re here to offer peer support, if you need it.

[Boris]

Hi Maz,
I can only say that you are awesome and thank you for all the information sharing! The entire process can certainly can be overwhelming, but I feel that I am ahead of it due to the knowledge shared on this site and scleroderma.org.

[Lynne G.SD]

Hi Sweetie;
I guess I am late getting back to you….like 3 days,so busy that I just forgot to go to the computer.I see our darling Maz has already answered all your questions.Have you had time to sit down and consider a plan of attack?Had to laugh at your stage name Boris????This reminds me of a cartoon character that my children used to see 40 years ago.I think it was Bulwinkle or something like that.Makes me chuckle
Lynne Christine

[Boris]

Hi Lynne!
LOL …Boris was my cat as a kid. I don’t know why I choose the name because I’m not feeling like a Boris 😆 ! I may reach out to you guys to change it to my name, Cyndi. Thanks so much for your email. This year has been crazy running around to local doctors (rheumatologists, homeopathics, pcp’s) and trying to figure it all out plus, plus like I am sure everyone else here can relate to!

I should get my tests back for the microplasmas, mono, and Epstein Barr this week. I’ll also do further test for Lyme. And then I’m thinking I should contact one of the doctors who is knowledgeable about AP therapy out of the state of Florida to work with my homeopathic in Miami or West Palm if they are willing to do that. I’m in my 5th month of taking minocin 100MG of minocin daily and its helped a lot with stiffness and paining in my lower legs and I do think its helped stopped the progression of morphea in one of my lower legs. So now I’m questioning boosting to 200MG either in pulse or daily and whether or need to combine antibiotics. I’m fortunate that I still have a high energy level so I’m dealing with the some of the CREST symptons , Morphea, and stiffness/pain.

In combination to the minocin I’ve done IV treatments of hydrogen peroxide and IV EDTA chealtion therapy to total about 13 treatments. I felt like the combination of these things were helping..but In the last couple of months I stopped because I want to monitor kidney function… so just trying to figure out where to go from here. I guess these next tests will help with my direction.

[Maz]

@Boris wrote:

Hi Lynne!
LOL …Boris was my cat as a kid. I don’t know why I choose the name because I’m not feeling like a Boris 😆 ! I may reach out to you guys to change it to my name, Cyndi.

Hi Boris/Cyndi,

Unfortunately, this old forum software doesn’t allow for User ID changes. You’d have to have your account deactivated and then start with a brand new account, so any posts you’ve made previously wouldn’t connect with the new account. We will have a brand new forum software shortly and all the memberships have been ported over to this, ready for launch. I don’t yet know enough about the new software to know if it will be possible for User IDs to be changed then, but might be worth waiting a bit to see if it can be done when the new site and forum are launched and we’re all used to using it. 🙂

[kater]

Hi Boris
for your interest I have diffuse scleroderma with a classical presentation. I have come to know it as Lyme-induced scleroderma. I think really it is Lyme that presents as scleroderma. I don’t have more typical Lyme things like pain, neurological symptoms etc. I have been on rotating antibiotics close to 4 years now and it has always included mino or doxy as staples. Lots of supplements and a good diet too–I keep away from sugar, excess carbs, gluten etc. Everything Maz said is excellent advise as always so I don’t need to say much more but just want you to know that Lyme can appear like these Illnesses –its a great imposter–so don’t stop investigating the Lyme connection. I had everything in remission a bit ago but in a bit of a bumpy period recently. I am having the Elispot test done in Germany to assess if my Lyme is still active or if this is more the autoimmune component.
best to you
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[Boris]

Hi Kater,
I am interested..thank you for your feedback. By looking at your program of treatment it appears you’re doing everything possible to get yourself back into remission, which I’m sure you will do and do wish that for all of us! I’m seeing that it is certainly a combined therapy approach to putting this nasty “disease” into remission and there is so much to learn and to do!

[Author]

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