Lyme Results (MAZ?)

[vonni]

Kim,

I had panels #188 and #189 done.

[kowens]

thanks everyone, I’m going to discuss this Igenix Lyme test with my internist on Thursday. I went to the Neurologist today and they ruled out ALS and a brain tumor and degenerative disease. They believe it is an autoimmune flare that is causing trouble between my neurotransmitters/nerves/muscles — specifically upper body. (possibly MS, but not likely) They want me to wean off all meds and supplements and have an EMG/EEG & MRI of the brain done in two weeks. They promise to get to the bottom of this, but they definitely are not agreeing with all the chelation supplements & LDN that I am taking. They went as far as saying some of the supplements can build up to toxic levels and cause neuro symptoms??? I’ll be talking to my environmental MD in the morning about how to wean off and what exactly to wean off of???

I’ll keep ya’ll posted. Thanks so much for the support. I am sure I feel like many, if I could get a “real dx” then I could develop a “real treatment plan” but that may be a dream???

Until then more rest.

Hugs! Kim

[Maz]

@kowens wrote:

They promise to get to the bottom of this, but they definitely are not agreeing with all the chelation supplements & LDN that I am taking. They went as far as saying some of the supplements can build up to toxic levels and cause neuro symptoms??? I’ll be talking to my environmental MD in the morning about how to wean off and what exactly to wean off of???

I’ll keep ya’ll posted. Thanks so much for the support. I am sure I feel like many, if I could get a “real dx” then I could develop a “real treatment plan” but that may be a dream???

Hi Kim,

I hope that getting a diagnosis or ruling out these diagnoses, should I say, will give you some peace of mind.

Unfortunately, the conventional view is pretty much diametrically opposed to the alternative and more integrative view. LDN is being used by countless MSers with countless reports of great success. Chronic bio-toxins and heavy metals have been tied to neuro diseases by some researchers.

http://www.chronicneurotoxins.com/

http://www.klinghardtacademy.com/Protocols/Klinghardt-Neurotoxin-Elimination-Protocol.html

I have used LDN and experienced some mild symptomatic relief during the 9 or 10 months I used it. Ultimately, I had to give it up, because it was causing me to have night tremors. I spoke to my LLMD about this and he said this was pretty common amongst Lymies. I’ve also done some gentle homeopathic chelation and experienced noticeable effects from the detoxification process, feeling a bit rough with each dosage increase until my body had a chance to adjust and release whatever toxins were making me feel rough. Felt like it did some good, overall, though, and this was just a mild version of what some folk do for chelation. Hope your environmental MD can help to put your mind at rest about these therapies, but can understand why you’d need a “clean slate” for any neuro testing you might need to have done.

The hopeful side to a possible MS diagnosis is that minocycline has some great neuro-protective props and has been shown in studies to slow down and even halt disease progression. They’re even using IV mino in stroke victims within hours of a stroke to prevent brain/nerve damage. 🙂

http://mssociety.ca/en/releases/nr_20071025_faq.htm

Hang in there, Kim!

[kowens]

If LDN was causing you night tremors possibly there is a chance it is causing me day/night tremors?? I’ve been on it nightly for 2 years. Thanks for all the info. Once I have a DX, my full intent is to return to a holistic treatment plan – diet, exercise, chelation and AP. Not immuno-suppressants (that will be my very last resort).

I stopped all my meds on Wednesday, but I’m only going off the AP for the last week prior to testing. I don’t think it will cause me any trouble being off one week…do you?

Hugs! Kim

Blessings 🙂

[kowens]

Hi friends, I’m back 🙂 Hope you all had a great holiday. I’m still slow, but improving. I went to MCG. They had me go off all my meds and supplements and ran a variety of neuro tests. My brain MRI came back showing “changes consistent with vasculitis, diabetes or Lyme disease.” They said that it was not related, diganosed me with UCTD and sent me home. My internist was not happy with that so off I went to the sclero clinic at MUSC. They reran my labs and said that they all came back normal – I thought it was a Christmas miracle! Turns out they were just wrong. It was a mistake. My internist ran the same labs and a more extensive Lyme panel and guess what? +ANA, +SCL-70 and the lab tech said I’m positive for Lyme! That was my 3rd Lyme test, but my doctor really felt like I was dealing with Lyme so she ran it again. Here is what the test results say exactly:

Lyme, IgM, Early Test/Reflex: Lyme Disease Ab, Quant, IgM: reference range 0-.90, my result is <.91

As I type this, TO ME, this appears to be a NEGATIVE result, but the lab tech told me it is POSITIVE? Could she just be wrong too? I feel like I’m dealing with a bunch of incoherent people and I’m the sick one?! LOL.

My internist and I have not been able to discuss the results yet due to the holidays. I can’t see her til next Thursday 1/5. I can’t get in with my environmental doc until 1/17. So, I’m on hold. I’ve left a message for my interist and I hope someone will at least call me tomorrow.

I have been back on my supplements for a few weeks and that has helped my energy level, but I’ve not started back on my AP. I tried LDN twice recently but one time my neuro symptoms came back so it scared me and I stopped again. Most of my neuro symptoms have subsided now. I have NO idea what brought them on. Fasciculations, full body tremors, trouble standing, trouble speaking, memory loss…it all just subsided… Now I’m left recovering from profound fatigue. I’m back at work part time, but still struggling. Still go my diagnosis of UCTD.

I never had yeast while on AP, but I’ve had 3 infections since going off of it 2 months ago – go figure?

If you have any insights re: what I’m dealing with, please advise.

[Maz]

@kowens wrote:

My brain MRI came back showing “changes consistent with vasculitis, diabetes or Lyme disease.” They said that it was not related, diganosed me with UCTD and sent me home.

I have been back on my supplements for a few weeks and that has helped my energy level, but I’ve not started back on my AP. I tried LDN twice recently but one time my neuro symptoms came back so it scared me and I stopped again. Most of my neuro symptoms have subsided now. I have NO idea what brought them on. Fasciculations, full body tremors, trouble standing, trouble speaking, memory loss…it all just subsided… Now I’m left recovering from profound fatigue. I’m back at work part time, but still struggling. Still go my diagnosis of UCTD.

I never had yeast while on AP, but I’ve had 3 infections since going off of it 2 months ago – go figure?

If you have any insights re: what I’m dealing with, please advise.

Hi Kim,

Thanks for coming back with your update…I was hoping you’d find some answers,but looks like you’ve just been left with more questions. Unfortunately, what you’ve been told is pretty consistent with what most chronic Lyme patients are also told:

“My brain MRI came back showing “changes consistent with vasculitis, diabetes or Lyme disease.” They said that it was not related, diganosed me with UCTD and sent me home.”

Lymies can wind up going from pillar to post trying to find answers and hear these kinds of confusing, contradictory statements all the time. 🙄

The results of your early Lyme Reflex IgM appear to be negative. All in all, this is pretty meaningless, because if you’ve had Lyme for longer than a few months (which would be likely considering you have been suffering for at least this long or longer), then it’s more likely you’d need to know what is going on with your IgG antibodies (past infection), conventionally speaking. Needless to say, standard testing is notoriously bad, whatever test they run, so this is why most of us here will get a western blot run through IGeneX. Lots of MCTD and UCTD patients get thrown into this garbage diagnosis bucket, as they just don’t know what it is…”mixed” or “undifferentiated” bascially means it looks like a lot of different things.

Here is a brain imaging study article on the Columbia Uni Lyme research website that may be interesting to you:

http://columbia-lyme.org/patients/ld_spinal_fluid.html

Seems probable that if LDN initiated a return of neuro symptoms, then it’s likely that LDN is the culprit. Whether this is a good thing or not (e.g. herxing), I couldn’t say, but a good LLMD should be able to provide you with a good work-up and assess this situation. They’d also be able to treat you for the recurring candida problem.

I have spoken with my doc regarding why candida may be a problem in some people as it relates to bio-films. Pre-existing candida thrives in the gut (usually kept in balance until we are chronically sick) and when treatment commences, the bio-film can be disturbed, releasing this fungus from its slimey hidey-hole. Most of us would shirk at the thought of this, but it can be a good sign that some bugs have been hit and candida is easier to treat when it’s released from bio-film, according to Dr. F. in AZ (he’s both an AP doc and a LLMD).

http://www.betterhealthguy.com/joomla/blog/243-dr-stephen-fry-on-fl1953

Some AP docs and LLMDs will pulse in Diflucan to an abx protocol, which is a systemic anti-fungal that hits candida (also Lyme) as the bio-film is broken up and candida becomes easier to treat and control (listen to radio show in above link for more info).

It’s great that you’re feeling a little better, Kim, but hope you’re able to take it easy. You’ve been through a lot. Do you have any plans to investigate all this further at this stage?

[kowens]

Maz, thank you for the info. I do plan to do the Igenix test in Jan. My husband and I have been discussing it. I’m also going back to my environmental doc, so I’ll see what he suggests as next steps. It is all so frustrating. It can make me feel crazy, especially when I dont feel well and juggle work, kids, doctors, rest… One of the hardest things is that everyone (work/friends/me/spouse) want an answer and I am always hopefull to learn something only to end up more confused by the docs.

So, when I order the Igenix test, I want to order the Western Blot? When I called initially called they tried to sell me some total package costing $800. Is that really what I need. That is so much money… Please let me know. Thank you!

[kowens]

Now that the holidays are officially over I was finally able to reach my local internist’s nurse AND the sclero clinic. Here’s the latest:

Per the Internist’s nurse: The Lyme test was NEGATIVE. The lab tech messed up because she didn’t realize that the < sign actually meant less that. (Seriously?) I will still run an Igenix test. I'd rather be safe than sorry, given the neuro symptoms and the MRI that states there are changes consistent with Lyme.

Then I spoke with my student doc at the sclero clinic. I told her that the tests that they said were inexplicably normal were in fact a mistake. I told her that my internist ran the same tests 1 week later, and they were all still positive. She said, that she was surprised by my normal results too given my lab results for the past 3 years so she had also had them re-ran and they were POSITIVE. However, with the holidays etc. she hadn’t had the time to call me yet.

SO basically all the time, money and effort I’ve spent in the last month amounted to nothing. No new news. No change in treatment plan. No follow up appointments scheduled until June. Thank GOD that my symptoms are currently quiet, my fatigue is lifting and I’m sticking to my holistic treatment plan that my environmental doc put me on…it seems to help…except when it doesn’t 🙂

Blessings in the new year!

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