Hi, I’m new

[razzle]

Hi,

I’m new to this forum. I was referred here from LymeNet. I was recently officially diagnosed with Lupus, though have been working on this diagnosis for a long time (previous MD’s kept telling me I had “Secondary Lupus-Like Syndrome” though they were unable to tell me what it was secondary to 🙄 ). It is also possible that I have some Scleroderma symptoms…rashes & swallowing problems & other gut motility issues. Got diagnosed with Lyme in 2007, but have had symptoms since 1978 or so…

I also have Dysphagia, Gastroparesis, pelvic floor dysfunction, IBS, Gluten Sensitivity, Sulfite Sensitivity, Asthma, Allergies, Multiple Chemical Sensitivities, Immune Deficiency (low T-Cells, especially the CD8 T-cells), adrenal fatigue, chronic fatigue (probably qualify as CFS, but not officially dx), chronically elevated ESR, high blood IgA levels (cause unknown), intermittantly elevated ANA & Lupus Anticoagulant, Factor VIII deficiency (but no Von Willebrand’s), vision issues, various mysterious skin rashes, malabsorption, and who knows what else…

I was put on IV doxycyline for a few months, but then my gut stopped functioning and my doctor decided it was because of the Doxy, so he took me off that. I seem to do best on Cipro, but despite having been on various abx for the last 2 years, have not made any lasting progress in my symptoms. Is this normal, that it takes a long, long time to see lasting improvements when one has autoimmunity in the context of Lyme?

Thanks,

-Razzle

[Maz]

@razzle wrote:

I seem to do best on Cipro, but despite having been on various abx for the last 2 years, have not made any lasting progress in my symptoms. Is this normal, that it takes a long, long time to see lasting improvements when one has autoimmunity in the context of Lyme?

Hi Razzle,

Welcome to the RBF discussion forum and sorry to hear about the multiple health issues you’ve been facing for so long. Everything you’ve described is classic for chronic Lyme…a veritable syndrome of seemingly unrelated, yet holistically related symptoms. My LLMD is absolutely convinced that lupus is amongst many AI diseases that can be triggered by Lyme and hitch-hiking friends. It’s not the only set of infections, but certainly a strong contender.

Are you working with a really good holistic LLMD? If not, are you able to travel to one? Lupies, in general, tend to be extremely hypersensitive and it can be a long old journey back to wellness, balancing and finding the right abx mix and doses that can be tolerated, detoxification, diet, supps, etc. So, working with a doc who is very experienced can really help to ease the journey. With multiple chemical sensitivities, it may well be that the Dr. K or Dr. S. approach to treatment would be beneficial:

http://www.klinghardtacademy.com/

http://www.healingteethnaturally.com/dr-dietrich-klinghardt-dental-toxicity-issue.html

http://www.chronicneurotoxins.com/

Yes, short answer is that it can take a lot of hard work, research, self-advocacy, working with an experienced doc, etc to find lasting remission from such complex, multi-systemic chronic illness. It takes many years for disease symptoms to progress and it can take a good many years to reverse them. The hope, though, is that this can be done with appropriate immune-system building strategies, because we may never be completely “microbe-free,” but if immune function is in balance and fortified, remission can be acheived.

Sending wishes of good health to you, Razzle. You’re in good company here…there are many rheumatic patients with concomitant Lyme and coinfections here. Have you been diagnosed with any coinfections?

[razzle]

Well, I’ve seen the famous Dr. K, and won’t be going back – he was completely disconnected to where I was at when I saw him, was recommending things I clearly stated that I was allergic to, and wanted me to take IV Rocephin…I was on TPN at the time and Rocephin is contra-indicated in those on TPN…

Went to Dr. S’s website…I pass the visual contrast sensitivity test with flying colors…it is too easy for me to remember the pattern of the lines from one eye to the next (it’s my formerly near-photographic memory – really miss it, but sometimes it pops up again and gets me in trouble, such as when taking the VCS test 🙄 )… I wonder what Dr. S. would say about that, LOL !

Coinfections. Test negative through Fry Labs for every coinfection they can test for. IGeneX also tests negative for Anaplasma and Ehrlichia. Clinically I was diagnosed with Bartonella by 2 different LLMD’s despite the negative tests, and I tend to agree given my symptoms. But I still think I have Anaplasma…but that’s just me talking…the LLMD’s I’ve seen really didn’t catch on to the low lymphocyte thing…but my regular doctor (Naturopath) who diagnosed me with Lyme also did finally figure out the low lymphocyte thing at least as far as getting the right test ordered to figure out more specifically which lymphocytes were low (T-Cells…and sometimes B-Cells, too) and thus the immune deficiency diagnosis.

I just recently saw another Lyme-Literate Naturopath who actually has ILADS training (my regular Naturopath I don’t think does have ILADS training, but he was the one who had me on the IV abx for 2 years, so he is open to the concept of long-term abx, and he has treated other Lyme cases successfully). I’ve only seen the new LLND once, so she hasn’t yet put me on a treatment protocol. I’ve been off abx since February this year, and both my regular ND and the new LLND say they’re fine with me being off for a while. I don’t know what the new LLND’s going to recommend…I see her again in a couple weeks, so I’ll find out hopefully at that time what she wants me to do for the Lyme/Bart.

What I don’t understand is how to tell when my symptoms are from Lyme vs. Lupus…aren’t they the same thing, if the Lyme is causing the Lupus? I don’t really have distinct flares anymore (used to, but not anymore)…I just feel lousy all the time now (have since 2005). Steroids used to help a lot, but most recent dosing of them (2006) didn’t do anything. And they never did help with joint pain. Abx do help with the joint pain, but not with anything else really. My biggest problem is with my GI tract, but the last time I saw a gastro doc here, he told me there was nothing he could do for me and wanted me to go to Mayo in Rochester. Did that in 2004, was an expensive “All in your head” and “here, take these antidepressants and you’ll feel better” (doctor speak for I don’t know what your problem is, but my problem (you) will go away if I give you these here happy pills) and you have “IBS” (that’s doctor-speak for I Be Stumped, right?)

This reply form has strange effects…keeps jumping to the top of the message on me!

[Maz]

Hi Razzle,

Well, certainly sounds like you’ve done the run-around! The only other doc that may help that I can think of at this late hour (must hit the sack now), is Dr. L. G. in NY. He’s AP (antibiotic protocols friendly) and specialises in gut issues:

http://www.mdheal.org/leakygut.htm

Have you heard of this doc? Is he within reach of you?

[razzle]

@Maz wrote:

Hi Razzle,

Well, certainly sounds like you’ve done the run-around! The only other doc that may help that I can think of at this late hour (must hit the sack now), is Dr. L. G. in NY. He’s AP (antibiotic protocols friendly) and specialises in gut issues:

http://www.mdheal.org/leakygut.htm

Have you heard of this doc? Is he within reach of you?

Nope, haven’t heard of this doctor…wish he was closer, I’m on the opposite side of the US… But I may need to travel to get better, so I’ll add this doctor to the list of potential doctors to see if I do decide to travel somewhere for help. Thanks for the recommendation, it is appreciated.

Thanks & take care,

[BG]

“Is this normal, that it takes a long, long time to see lasting improvements when one has autoimmunity in the context of Lyme?”

When the autoimmune disease is lupus, the answer is yes.

I have been struggling with acceptance of this as well so have been reading the reference book “Infectious Disease” by Sherwood L. Gorbach, MD, John G. Bartlett, MD, and Neil R. Blacklow, MD, obtained via interlibrary loan (it’s also available via Google Books which is how I discovered it). I tried to get help from an infectious disease doc in my area but was rebuffed so I decided to read what he reads. Very eye opening. Will be reporting him to the medical board based on what I’m reading in this book because IT IS HIS JOB to sort this stuff out and guide treatment until one is cured and or to keep the infectious diseases in check if the diseases aren’t curable.

Lupus patients are susceptible to a wide range of infections so there is no one answer. In fact, treating one infection is likely to lead to other infections. We are most susceptible to intracellular infections with bacteria, mycobacteria, viruses, parasites, and fungi. Based on what I’m reading, our struggle will be life long — difficult, yes, but manageable.

Barb

[Author]

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