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  • #307562
    ellie6
    Participant

    Hello,

    In Nov 2011 I began having strange pains in my hips. I had been bitten by a tick in Oct of that same year. My PCP finally agreed to run a lyme test in Dec as my pain had become debilitating. The ELISA came back equivocal. She prescribed one month of doxy. Within 48hrs of taking it all my pain was gone. 3 days later it was back worse than beofre. I finally got in to see an LLMD in Jan 2012. After running numerous tests she wa convinced I was dealing with lyme. I spent most of 2012 on different oral antibiotics as well as bicillin IM. There were times I felt some improvement but over all the antibiotics seemed to make me feel worse. Some more than others. This year I decided to seek another opinion and had testing done for food allergies, stool testing etc. I ended up having numerous food allergies including gluten as well as stool testing showed a problem digesting. Bloodwork showed candida. I had an elevated sed rate as well as an elevated CRP. I have eliminated gluten and take digestive as well as systemic enzymes. I have cut out all sugars as well. There has been some improvement, but some days the pain in my lower back and hips is awful. I definitely have seen a connection though between my gut and the pain. I saw a rheumatologist today and he want to do a cat scan of the sacroiliac joints. Based on the sed rate, crp and physical exam he thinks I have sacroilitis, possibly psoriatic arthritis as I do have dermatological psoriasis.

    Depending on what the results show the treatment could be meds like enbrel… I know meds like these are contraindicated in those with lyme. Has anyone dealt with a similar situation? 😕 😕

    #368423
    Maz
    Keymaster

    @ellie6 wrote:

    This year I decided to seek another opinion and had testing done for food allergies, stool testing etc. I ended up having numerous food allergies including gluten as well as stool testing showed a problem digesting. Bloodwork showed candida. I had an elevated sed rate as well as an elevated CRP. I have eliminated gluten and take digestive as well as systemic enzymes. I have cut out all sugars as well. There has been some improvement, but some days the pain in my lower back and hips is awful. I definitely have seen a connection though between my gut and the pain. I saw a rheumatologist today and he want to do a cat scan of the sacroiliac joints. Based on the sed rate, crp and physical exam he thinks I have sacroilitis, possibly psoriatic arthritis as I do have dermatological psoriasis.

    Depending on what the results show the treatment could be meds like enbrel… I know meds like these are contraindicated in those with lyme. Has anyone dealt with a similar situation? 😕 😕

    Hi Ellie,

    It’s nice to meet you, but sorry you had to seek us out.

    Have you attempted to cut out starches? Starch elimination seems to be quite helpful for those with spondyarthritides, including PsA. When you had stool analysis done, did they manage to identify other bugs in your gut? Klebsiella pneumoniae, as well as Lyme and the chlamydias (pneumoniae and trachomatis), seem to be common offenders for this sub-set of rheumatic diseases. You’ll find lots of helpful info at the http://www.kickas.org and http://www.cpnhelp.org websites.

    Unless a person really has no other recourse, it’s not really recommended to go on anything immune-suppressive in the case of chronic Lyme. There have been studies run in Finland on mice, infected with Lyme and treated with the abx ceftriaxone, that became seronegative for Lyme, but reverted to positivity with live spirochetes cultured, after being treated with anti-TNF medications. You can read about this here:

    http://columbia-lyme.org/research/keyarticles.html

    Commentary. These two studies demonstrate that Bb spirochetes can persist in the mouse after ceftriaxone therapy. The Finish study was remarkable in that culture and PCR were negative after ceftriaxone but, after additional treatment with anti-TNF-alpha, viable spirochetes were recovered. TNF is a pro-inflammatory cytokine which, when blocked, typically results in a reduction in clinical inflammation; for this reason, such treatment is used for patients with rheumatoid arthritis. To the surprise of the authors, viable spirochetes were recovered in these PCR- and culture-negative mice after TNF blocking treatment was given. Also interesting is that anti-TNF treatment did not result in the expected finding of a reduction of joint swelling.

    The Finnish study was the first study to demonstrate that immunomodulatory treatment of animals infected with Bb could convert them from culture negative to culture positive.”

    It’s interesting to note that on package insert of the biologic drugs, there warnings about MS and Lupus-like diseases. Could these patients have undetected Lyme? Other warnings have resulted from the fact that some patients have developed psoriasiform skin problems (keratoderma blennorrhagicum) on the soles/palms as a result of previous infection with chlamydia trachomatis (causes reactive arthritis).

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2776609/

    http://www.ajnr.org/content/26/6/1548.full

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2770909/

    As a Lyme patient, myself, who also has a first-degree relative with MS, TNF-blocking meds are contraindicated in my case. While I would not want to put anyone off trialing anything if they felt they needed it to function, it’s still worth becoming informed about the potentials of some of the conventionally-used drugs for rheumatic diseases. In light of known past infection with Lyme, which can be reactivated and could perhaps create further health issues down the road, making an informed decision about such treatments may be quite important.

    The Road Back Foundation’s focus is antibiotic therapies for rheumatic diseases. Are you planning on going back on abx therapy, Ellie? If so, are you anywhere near NYC? There is quite a good AP physician who is also Lyme Literate and who specializes in gut-related health issues, if you are interested in his contact info.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #368424
    ellie6
    Participant

    Thanks Maz for all the helpful info. The stool testing only showed candida and undigested particles. Which leads my LLNP to suspect leaky gut. I just read about cutting out starches. I’m a little confused at to what is a starch and what is not. Between gluten free, the candida diet and no starches, not sure what I will eat…I wonder too if alot of my pain is candida related. The problem is any antifungals trigger severe pain in the SI joints. I have tried nystatin, fluconazole as well as just plain coconut oil and garlic. The pain becomes debilitating. I assumed it was die off but even with detoxing I could not tolerate it.

    I would be interested in learning more about the doc in NY. I am in Mass, not sure if there is anyone closer. I will be having the catscan of the SI joints Saturday. Hopefully it will give a clue.

    #368425
    Maz
    Keymaster

    @ellie6 wrote:

    Thanks Maz for all the helpful info. The stool testing only showed candida and undigested particles. Which leads my LLNP to suspect leaky gut. I just read about cutting out starches. I’m a little confused at to what is a starch and what is not. Between gluten free, the candida diet and no starches, not sure what I will eat…I wonder too if alot of my pain is candida related. The problem is any antifungals trigger severe pain in the SI joints. I have tried nystatin, fluconazole as well as just plain coconut oil and garlic. The pain becomes debilitating. I assumed it was die off but even with detoxing I could not tolerate it.

    I would be interested in learning more about the doc in NY. I am in Mass, not sure if there is anyone closer. I will be having the catscan of the SI joints Saturday. Hopefully it will give a clue.

    Has your LLNP considered trialing Enhansa? It’s specially compounded and many insurances are actually covering its cost, which is phenomenal! I pay a $10 co-pay for a month’s supply. It has very good anti-candida props, but it also helps as a pain-reliever to down-regulate systemic inflammation (but also important for reducing inflam in gut lining which perpetuates leaky gut) and also promotes glutathione in the body to assist with detoxing. I’ve tried other curcumin supps, but this particular compounded one is excellent and works well for me, though one can expect a good deal of die-off as it has anti-viral, anti-bacterial and anti-candida props, so doses need to be increased slowly to tolerance. It comes in two different capsule dosing sizes (150mg and 600mg), but I think they also have loose powder that can be used in scoops and added to food:

    http://leesilsby.com/enhansa-homepage

    There are plenty of strategies one can use to heal the gut. Here is the link to the doctor in NYC who specializes in leaky gut and who also has helped Lyme patients. He is listed with Road Back as an AP physician, but he’ll also help with ways to heal the gut while treating the bugs – he’s out of pocket and expensive, though (with a wait list of several months for new patients), so if your LLND is aware of this doc, it may save you time and money if she can follow some of his strategies mentioned in the following article:

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

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #368426
    ellie6
    Participant

    I was using Meriva SR by Thorns. I’m wondering how it compares to Enhansa. http://www.thorne.com/products/musculoskeletal-health/prd~sf775.jsp
    The Meriva didn’t help at all. I noticed there are different Enhansa products which one do you recommend, the repair?

    I looked over the link for the doctor in NY. It seems like my LLNP has done some of the things he recommends like food allergy testing. Interestingly enough I have been doing the gluten free since testing allergic to it and my skin psoriasis has been awful, not sure why. I would have thought it would have improved.

    #368427
    Maz
    Keymaster

    @ellie6 wrote:

    I was using Meriva SR by Thorns. I’m wondering how it compares to Enhansa. http://www.thorne.com/products/musculoskeletal-health/prd~sf775.jsp
    The Meriva didn’t help at all. I noticed there are different Enhansa products which one do you recommend, the repair?

    I looked over the link for the doctor in NY. It seems like my LLNP has done some of the things he recommends like food allergy testing. Interestingly enough I have been doing the gluten free since testing allergic to it and my skin psoriasis has been awful, not sure why. I would have thought it would have improved.

    Hi Ellie,

    Very sorry, but it wouldn’t be right of me to actually recommend any product and I’m unable to compare results with the Meriva SR as I haven’t tried that one, but I can share that I’ve had very good results from the Enhansa that is specially compounded and rx’d by my doctor. As mentioned before, I only pay a $10 co-pay, which is great, and, I felt, worth the try, as I wanted to get off my staple 2 daily Advils. The one he rx’d is just the straight Enhansa and it came to me in the mail in a regular prescription bottle…not the branded bottle seen on the website.

    There are quite a few studies out there using curcumin for psoriasis for anyone interested who may be suffering from psoriatic arthritis:

    http://www.ncbi.nlm.nih.gov/pubmed/?term=curcumin+psoriasis

    I don’t know why one formulation may work and another might not. I had tried another OTC curcumin product and it had no effect whatsoever that I could tell. It could be in the formulation or dosing? Or it could be that some folks just don’t respond to curcumin as a treatment. What is interesting is that the first article listed, published in the British Journal of Pharmacology just this past Feb, speaks to curcumin’s natural anti-TNF properties. For some reason, this natural root has comparable effects to expensive anti-TNF medications, but without the nasty side-effects. Perhaps this is due to the fact that is has so many other beneficial properties (anti-bacterial, anti-viral, anti-fungal, promotes glutathione, etc)? So, it seems to be doing two things at once…calming the inflammatory cascade while also targeting pathogenic offenders?

    Folks with spondylarthritides (including PsA) seem to find that starches are the worst offenders. It could be that the bugs that colonize the gut are voracious starch consumers…here is just one study by British researchers, Rashid and Ebringer, though you will find more related research on the http://www.kickas.org website:

    http://www.ncbi.nlm.nih.gov/pubmed/21955846

    My MIL in UK has both AS and PsA and, as sure as eggs are eggs, every time she consumes potatoes, within an hour or two, her fingers blow up like sausages.

    Leaky gut also seems to have a candida overgrowth component. From what I’ve read, candida colonizes the gut lining as a normal part of gut flora, but when it gets the upper hand (NSAIDs, ibuprophen and aspirin, overconsumption of sugars, compromised immune function, imbalance of gut microbiota, poor probiotic intake, etc), this leads to inflammation of the gut lining. My lay understanding is that the rhizoids or hyphae (roots) of candida burrow into the gut wall and form microscopic perforations. These perforations then allow toxic candida byproducts, gut pathogens, and food particles to leak out of the gut to be picked up as foreign proteins and setting the scene for inflammation and food allergies.

    http://www.nationalcandidacenter.com/leaky-gut/

    http://www.ei-resource.org/treatment-options/treatment-information/leaky-gut-syndrome-treatment/

    You may already be very well versed in all this, so forgive me for going on, Ellie. If it’s not anything new to you, then perhaps it will be of some use to another here.

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #368428
    A Friend
    Participant

    @ellie6 wrote:

    Thanks Maz for all the helpful info. The stool testing only showed candida and undigested particles. Which leads my LLNP to suspect leaky gut. I just read about cutting out starches. I’m a little confused at to what is a starch and what is not. Between gluten free, the candida diet and no starches, not sure what I will eat…I wonder too if alot of my pain is candida related. The problem is any antifungals trigger severe pain in the SI joints. I have tried nystatin, fluconazole as well as just plain coconut oil and garlic. The pain becomes debilitating. I assumed it was die off but even with detoxing I could not tolerate it.

    I would be interested in learning more about the doc in NY. I am in Mass, not sure if there is anyone closer. I will be having the catscan of the SI joints Saturday. Hopefully it will give a clue.

    Hello Ellie,

    Have just this morning read posts on your thread. Sounds like you have looked into and tried numerous things. Also, it appears you have identified a number of the sources of your problems. And Maz is certainly knowledgeable on the Lyme subjects and much, much more.

    The reason I would even presume to post anything further here is because of my own lengthy experience, with unfolding problems. I can identify with longterm gut issues, and finding information that helped turn those things around. However, even after evidence for quite some time that everything was greatly improved… and improving… I begin having fascia pain and before long bone pain — while being on AP, and a longtime excellent diet, and feeling I had been reborn… until the fascia and bone pain kicked in. My AP physician kept telling me all my labs were good. Since I’d been doing so well for a long time, bless him! I thought he wasn’t (or couldn’t) take me seriously.

    Unfortunately, after a pretty long time trying to figure this out, I finally began testing my pH and found the culprit… a big culprit! Unfortunately, also, apparently my body had been using all the good things to “put out the fire” caused by a very acidic destructive pH. It wasn’t until my body could not manufacture (without my having/getting additional knowledge) what it needed, until I became knowledgeable and gave it the help it needed. Many posts of mine over years contain this story already. But, just this morning, I’ve been reading and saving info/links into a Word document, information from a site that lays this out extremely well. I hoping my timing this morning is Divine Providence… since I came to the Board to share this information (which several years ago I learned from other sources) — but not before the fascia and bone pain were heralding to me that much damage was being done! I managed to educate myself on pH and acidic wastes stored in the body, and how this can lead to bone damage… but not enough or soon enough… but have kept learning, and have remarkable help from a few great but simple choices.

    I am going to paste this link here for you, but may also create a new topic to post links to this information so it can more readily be found. Good luck to you! There are lots of great people and great minds here to help you; and I’ll be following your progress… with a few prayers.

    This is only a small portion of the list of articles under this subject to improve our understanding of our bodies and how to help them stay well or get well:

    http://biomedx.com/microscopes/rrintro/rr7.html
    Biological Terrain
    pH, BUGS, & ROT.
    Understanding Biological Terrain
    When your body’s blood pH changes away from the ideal, it can become an environment for opportunistic microorganisms to grow and flourish.
    [Ed note: An excerpt that really caught my attention in the Biomedx information; underlining added by myself]
    Excerpt begins:
    Wow. Those are three critical minerals in our body. The potassium and magnesium will leave the body, but as a preservation mechanism the sodium will be retained. Remember, the body knows it must place an alkaline molecule in the blood to escort out this increasing acid that is being stored in the tissues and cells. What it will often do (when mineral reserves are low, which is often the case when eating a modern American diet) is draw CALCIUM (the most alkaline mineral known) from the bones and put it into the blood. This leads to something called free calcium excess. This is something you don’t want and it is what’s behind osteoporosis, arthritic pain, etc. It is brought about by the body compensating for an ever increasing tissue acidosis somewhere in the body.
    [End of excerpt]

    Best,
    AF

    #368429
    246bride
    Participant

    Maz,

    Reading and researching about Enhansa. Was it as simple as giving your dr a call and asking him to write a script for Enhansa?

    thanks! Really would love to try this.

    Carey

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