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This topic contains 10 replies, has 2 voices, and was last updated by  ellie6 3 years, 8 months ago.

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  • #308315
    ellie6
    Participant

    I know there are some on here that are very lyme literate and I could use some help. 2 years ago I tested positive for Band 23 on the Western Blot. I just retested last week and all bands are negative. What could that mean? Thanks!

    #372325
    Maz
    Keymaster

    @ellie6 wrote:

    I know there are some on here that are very lyme literate and I could use some help. 2 years ago I tested positive for Band 23 on the Western Blot. I just retested last week and all bands are negative. What could that mean? Thanks!

    Hi Ellie,

    Did you re-test for any particular reason? Another tick bite, for instance? Return of symptoms? What lab did you use for your initial WB – same as before? New lab? Any other testing run, like CD25?

    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.

    #372327
    ellie6
    Participant

    Because it had been 2 years my LLNP though we should see what it showed. No new bite, same symptoms as 2 yrs ago, but better. Same lab, Quest. CD 57 was run as well, still below 20.

    #372326
    Maz
    Keymaster

    @ellie6 wrote:

    Because it had been 2 years my LLNP though we should see what it showed. No new bite, same symptoms as 2 yrs ago, but better. Same lab, Quest. CD 57 was run as well, still below 20.

    Ellie, it’s not worth re-running a western blot after a diagnosis of Lyme has been given, though in your case as your initial test just showed up with one antibody band, I can see why you’d want to see if any further antibodies have shown up. In other words, once infected, experienced LLMDs treat until all symptoms are resolved, assuming the bug(s) are still present. The CD57 being so low is probably why you’re not producing enough antibody to show up on the western blot, so in this case it’s a more relevant test, because a very low reading means more work needs to be done to improve on immune function…Lyme can be so immunesuppressive that the sickest patients often can’t mount enough of an immune attack (measured by antibody response) to the bugs.

    What else have you done to support immune function in addition to abx therapy? Anti-parasitic treatments? Any dietary changes? Heavy metal/mold testing? Hormones checked? Detoxification? Any supps?

    Did you revert to just low dose doxy with LDN when you started to feel better or was it for another reason?

    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.

    #372328
    ellie6
    Participant

    Thats all a little disheartening 🙁 I was hoping perhaps it meant the first test was an error, or I was now cured 🙂

    I have been following a gluten, dairy, soy, starch, and grain free diet for about a year. My CRP normalized. I switched from levothyroxine to armour thyroid. I have tried LDN, but could not tolerate it. Major increase in pain, same with antifungals and antiparasitic meds.

    The past week I hacve been eating raw sauerkraut, taking vitamin C along with PH drops in my drinking water as well as using paragard an antiparasitic and have had a big reduction in back pain. I have been opening the paragard capsules and emptying it down to like a quarter of the dose to make it more tolerable.

    #372329
    Maz
    Keymaster

    @ellie6 wrote:

    Thats all a little disheartening 🙁 I was hoping perhaps it meant the first test was an error, or I was now cured 🙂

    I have been following a gluten, dairy, soy, starch, and grain free diet for about a year. My CRP normalized. I switched from levothyroxine to armour thyroid. I have tried LDN, but could not tolerate it. Major increase in pain, same with antifungals and antiparasitic meds.

    The past week I hacve been eating raw sauerkraut, taking vitamin C along with PH drops in my drinking water as well as using paragard an antiparasitic and have had a big reduction in back pain. I have been opening the paragard capsules and emptying it down to like a quarter of the dose to make it more tolerable.

    Great work on the diet, Ellie! The reaction to the anti-parasitics and antifungals may be providing clues about what could be holding you back. Parasites and heavy metals are something integrative LLMDs feel are important to work on in order to break down biofilms where bugs hide out. Biofilms line the mucosal lining of the gut and are found through the body. Candida has root a root-like structure that drills into the gut lumen and leaves tiny perforations, leading to gut permeability. Parasites increase the inflammation. Leaky gut can be a real issue with folks who have spondylarthropies (worsened by NSAIDs). You might find this article interesting…Dr. G. is a leaky gut specialist (AP doc and LLMD) in NYC:

    http://www.huffingtonpost.com/leo-galland-md/lyme-disease-symptoms_b_876096.html?

    Has your LLND run any stool testing on you to check for candida and parasites? Ever tried IV clindamycin? Had saliva testing run for ovarian and adrenal hormones? Just trying to brain storm with you a bit. 😉

    Worth reading Dr. G’s article on leaky gut:

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

    PS I also had a real problem trying to take any form of anti-parasitic initially. It was when I started working on heavy metals that I found it easier to handle the anti-parasitic herbals (like humaworm and ivermectin, both of which caused tremendous die-off).

    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.

    #372330
    ellie6
    Participant

    I did have stool testing done by Genova. It showed alot of undigested food, no parasites, but the fungi was +4 which seems like most aren’t sure what this means.

    Due to all the food allergies I have I know I am dealing with leaky gut. Not sure on the candida at this point as my diet is pretty clean.

    I’m puzzled by the things that seem to help like the PH drops and vitamin C as well as enzymes.

    I have never done IV antibiotics and worry about introducing more into an already compromised gut…

    #372331
    Maz
    Keymaster

    @ellie6 wrote:

    I did have stool testing done by Genova. It showed alot of undigested food, no parasites, but the fungi was +4 which seems like most aren’t sure what this means.

    Due to all the food allergies I have I know I am dealing with leaky gut. Not sure on the candida at this point as my diet is pretty clean.

    I’m puzzled by the things that seem to help like the PH drops and vitamin C as well as enzymes.

    I have never done IV antibiotics and worry about introducing more into an already compromised gut…

    Sure is a bit of a puzzle, Ellie…I found the following book to be great for assessing all the “nails in our feet,” as Dr. H. describes it. He says, if you just remove one of 16 nails out of the foot of someone with chronic illness and expect them to get well again, then it’s not going to work. Each nail needs to be found and removed. Interesting read, if you have the inclination:

    http://www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400

    Makes sense that the Vit C would help – it’s antioxidative and helps the body get rid of free radicals to reduce inflam and pH (potential hydrogen ions) drops reduce acidity (disease flourishes an acidic state). If food isn’t being digested properly, then you’re wise to be taking digestive enzymes. Systemic enzymes (used between meals) also help break down biofilms and have some anti-inflam effects. These are great supports. Maybe more clues that working more aggressively on detox would help?

    Can understand your concern about IV clindamycin with compromised gut function, though it does have some good anti-parasitic effects (used for protozoans). One of the best anti-parasitics I’ve used is liposomal artemisinin, specially compounded with EDTA and ALA. EDTA also helps break down biofilms and reduces heavy metals that apparently enhance biofilm formation. ALA is also an antioxidant, so it’s a multi-pronged approach to treatment. Artemisinin (artensuate) has also been studied for its immune-modulating effects and really extensively for its anti-cancer props.

    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.

    #372332
    ellie6
    Participant

    Thanks so much Maz for all the help and suggestions. Anything that modulates the immune system seems to cause a spike in pain, even vitamin D. My LLNP is having a hard time finding things I can tolerate. My rheumy thinks I need a med like Enbrel to suppress the immune system…

    I also have hashimotos to further complicate things. I feel as though my gut is the major issue here. I have an appt with a new gastro person next week and I really don’t even know what other tests to ask for..I will also be seing a new derm as a rash that has always been called psoriasis is now making me wonder if a biopsy could lend a clue. It seems to be related to food and stomach issues. Flares at times and then completely quiet..

    I wonder if I should try the LDN again but with a different filler. Perhaps there was some starch in there. The filler was avicel. I can’t tolerate any starch at all which is common in AS. My oral estrogen contains starch and my gyn will not rewrite the rx until I see her next month 🙁 I have tried not taking it but the night time hot flashes are awful as I had a hyst seven years ago,

    #372333
    Maz
    Keymaster

    @ellie6 wrote:

    Thanks so much Maz for all the help and suggestions. Anything that modulates the immune system seems to cause a spike in pain, even vitamin D. My LLNP is having a hard time finding things I can tolerate. My rheumy thinks I need a med like Enbrel to suppress the immune system…

    Ellie, I seem to have this issue, too. In my case, I react with drug-induced lupus reactions, but for some reason I tolerate the compounded liposomal artemisinin really well. Strange how one thing may work and another doesn’t, eh? We’re all so unique.

    I also have hashimotos to further complicate things. I feel as though my gut is the major issue here.

    Hashimoto’s can do a real number on the gut. The hypothyroid state can cause slow gut motility, but before it settles into this state, the hyper phases can make it seem like IBD is the problem. 🙄 The gluten-free diet you’re on should be a great support for your thyroid due to thyroid cross-reactivity with gluten.

    I have an appt with a new gastro person next week and I really don’t even know what other tests to ask for..I will also be seing a new derm as a rash that has always been called psoriasis is now making me wonder if a biopsy could lend a clue. It seems to be related to food and stomach issues. Flares at times and then completely quiet..

    Have you ever been tested for H. Pylori? Like the Lyme testing, it’s not always an accurate gauge of infection, but it’s worth asking about as it has been tied to rheumatic diseases and all sorts of gut issues.

    I wonder if I should try the LDN again but with a different filler. Perhaps there was some starch in there. The filler was avicel. I can’t tolerate any starch at all which is common in AS.

    Did you use one of the LDN-recommended compounding pharmacies for your script? Skip, at Skip’s Pharmacy in FL, is apparently a great guy to call as he is a strong proponent of LDN and should be able to guide you on this.

    My oral estrogen contains starch and my gyn will not rewrite the rx until I see her next month 🙁 I have tried not taking it but the night time hot flashes are awful as I had a hyst seven years ago,

    Are you on unopposed estrogen therapy? i.e. no progesterone? Has your LLND run any saliva testing on your ovarian and adrenal hormones recently?

    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.

    #372334
    ellie6
    Participant

    The LDN was from Skip’s pharmacy so it is the avicel filler. By day 3 each time I try it the pain becomes intolerable.

    I will ask my LLNP about liposomal artemisinin at my visit next week. As far as my Hashimotos goes I was on 90 of armour and now based on my most recent labs she is telling me to drop down to 75, I hope she is correct…I did not realize hashis can cause gut issues. My diet has been gluten free for a yr, what else can I try? I cannot tolerate any starches or grains so I have been without those for close to a yr as well. No dairy, soy or eggs either.

    I have just been on oral estradiol, can’t tolerate progesterone. It makes me depressed, teary etc.

    Sleep is horrible as well. I wake every 90 minutes throughout the night. I do find if I eat something like an almond flour muffin prior to bed I can get longer intervals.

    It’s all so confusing and depressing. Thanks for all your help!

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