- This topic has 22 replies, 6 voices, and was last updated 8 years, 4 months ago by
.
-
Posts
-
I have recently started minocycline 25 mg every second day, and then switched to MWF. I am waiting to see a Rheumatologist but feel that I have Lyme induced psoriatic arthritis. I have severe herxes with most things and need to go very slow. I read about PhilC starting at this dose and it seemed like a good idea to try. I still have strong herxes, even at 25 mg…..eye irritation, chest pressure and my new symptom is pain in mid back. I tend to get joint damage with I herx and so I am very concerned about this. I have also started taking Cortef (5 mg). Any advice would be appreciated. My LLND only has one other patient who gets joint damage when herxing.
I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T
I have recently started minocycline 25 mg every second day, and then switched to MWF. I am waiting to see a Rheumatologist but feel that I have Lyme induced psoriatic arthritis. I have severe herxes with most things and need to go very slow. I read about PhilC starting at this dose and it seemed like a good idea to try. I still have strong herxes, even at 25 mg…..eye irritation, chest pressure and my new symptom is pain in mid back. I tend to get joint damage with I herx and so I am very concerned about this. I have also started taking Cortef (5 mg). Any advice would be appreciated. My LLND only has one other patient who gets joint damage when herxing.
DMW, are you seeing a Lyme Literate MD who is also integrative in approach? Treating Lyme with low doses of pulsed antibiotics may not be the optimal way to go, rather, pushing Lyme into resistant forms. If you’re having detox issues an integrative doc should be able to help with this, to reduce the inflammatory effects of herxing and cleaning up detox pathways might even be needed prior to hitting the bugs. E.g. People with the MTHFR gene mutation a heavy metal load, or imbalances in hormones can have serious issues with detox and sorting this out can help with excessive inflammatory responses. Not saying this is your issue, as I don’t know and just a fellow patient, but working with an experienced doc who looks at these types of things can make a big difference in recovery.
I am working with an LLND, who can prescribe antiboitics. There are not any LLMD’s in Canada. I have severe herx reactions from supplements, herbals, antibiotics, so I am trying to gradually increase my dose. I had testing done through 23 and me and I don’t have the MTHFR gene mutation but I have a lot of other deficits. I have also worked with a local LLND who tried to help me increase my detox pathways, but I got worse and couldn’t tolerate anything I tried. My herx reactions cause more joint damage, so my LLND is trying a slow gradual approach but this doesn’t seem to be working either. There aren’t any integrative doctors in my province. I am wondering if I need to be on a biologic or something to stop my immune system from over reacting. I can’t seem to find anything that helps. Thanks for your response.
I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T
No I am in NS but I traveled to BC for help. Did you have severe herxes and get full of inflammation when you started treating Lyme? Were you on MTX when you started antibiotics? I keep getting more joint damage and am not sure what to do to prevent it.
I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T
No I am in NS but I traveled to BC for help. Did you have severe herxes and get full of inflammation when you started treating Lyme? Were you on MTX when you started antibiotics? I keep getting more joint damage and am not sure what to do to prevent it.
Hi DMW,
Have you contacted CanLyme to ask for an integrative llmds who might be nearer to you? There are a few good ones in BC but there might be newer ones in your region that we haven’t been notified about yet.
No, I chose not to use any immune suppressants to dampen my herxing at any time during my treatment, although I have used Plaquenil, which has some anti-inflammatory effects and also treats tick-borne protozoan infections and is thought to be a Lyme cyst buster. It doesn’t do much to prevent joint damage. Tetracyclines do have some nice immune modulating and joint protective effects, though probably not much in the low dose range you need to take it in.
There are a few Lyne patients here who have used a biologic drug or other Dmard to try to avert joint damage, though. It can be a tricky decision to make, because Lyme loves immune suppression, but sometimes needs-must.
Hard to know how to respond without a bit more detail. Any chance you could add a signature line of your diagnosis, med history, current meds and supps to date, etc? Thanks!
DMW
Sorry to hear you’re having so many issues with hyper-sensitivity.Just a suggestion here: You might want to check out bovine colostrum: the better ones contain colostrum taken from the first 16 hours of milking from pasture-fed cows. Of the many benefits, one is supposed to be the high levels of proline-rich polypeptides (PRPs). PRPs have been shown to stimulate an underactive immune system and repress an overactive immune system, bringing the immune system to homeostatic balance.
Would suggest you do your own research on this – and perhaps discuss with your LLND.Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Maz, I have been in contact with Canlyme several times, but the only place to get help is BC……5000 km away. I only had to go once and now I can do phone appointments. I got Lyme in April 2013…thought I had RA since I felt full of inflammation, and got some joint damage in my knee and shoulder right away. (Dr Keeps saying it’s diffuse osteoarthritis). After 8 months of being miserable my dr gave me 3 weeks of antibiotics. I had a terrible herx on them (severe insomnia, depression, fatigue, and chest pressure). I had to stop them after a week, due to severe abdominal pain, but it did seem to reduce the joint pain. That was all my dr would do….he never did take me seriously. My other symptoms were constipation, migrating joint pain, eye pressure, floaters, blurry vision, tight fascia, subcutaneous nodules in my arms and legs, etc.
After the week of antibiotics I did Cowden and it took me three months to work up to the full 30 drops. I herxed with every drop increase. I did Cowden for 8 months but everytime I did the 36 hour pulse I would get more joint damage, and have a terrible herx. I then started cannabutter (made from medical marijuana). I have been on this since last August and it has helped me the most. However, I recently started to get new symptoms (pain in my feet and heels)and felt I should try antibiotics again. I have become hypersensitive to everything….anything that regulates the immune system or kills bacteria. I tried LDN and had a bad flare up, and even had some psoriasis develop which clued me in as to why I am getting joint damage. I can’t take most supplements…magnesium, folinic acid, moducare, herbals to help with detoxing, etc. I’ve read that anything that regulates the immune system with PSA will cause your symptoms to get worse. Lynnie, at this point, I am very scared to try anything that regulates the immune system, especially after trying LDN and getting more joint damage. Lynnie, what did you do to help with inflammation when you started treating?
I have been referred to a Rheumatologist but it will take months and months to get in. Everything I try (except cannabutter) had made me worse. I also have mold toxins from the leaky classroom I taught in for 17 years. I’ve tried activated charcoal several times, but it was also pulling out the cannabutter and I got all my Lyme symptoms back and more joint damage….shoulders, knees, elbow, foot, neck and now my back. My LLND only has one other patient with joint damage, and he said that they tried all the DMards and nothing helped. That’s why I thought I would ask here.
I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T
DMW, can you list actual meds you’ve tried (in addition to mino and LDN), supps (anything in addition to Cowden) you’ve tried and also infections your LLMD has tested for? Has the LLND tested for anything else, like hormones and heavy metals? What detox methods do you use? Also your official rheumatic diagnosis, if you have one? If AS or PSA, then there are dietary measures that can really help…but you may already be well aware of these.
There have been one or two people here with similar issues to yours and one lady’s journey took a while to unravel but it turned out that untreated babesiosis WA1 and a heavy metal load turned things around for her. She had to do a lot of work to unblock detox pathways, after silver filling removals with a biologic dentist, but she did find remission after a lot of hard work. She also couldn’t tolerate anything other than tiny amounts of tetras initially.
There are also top notch llmds south of you, here in the US. I’m thinking we have talked before but it’s been awhile?
If you don’t have allergies to dairy (casein) then bovine colostrum, as Lyn suggested, is said to work like a natural anti-TNF med. it also helps to heal the gut tight junctions in leaky gut, which can be a cause of hypersensitivity.
You’re reactive for some reason, so we’re just trying to brainstorm some ideas with you. Frustrating, I know. I am also very sensitive and my first year was a nightmare and has been off and on since. It can take a lot of patience, trial and error, and even if you do decide to use dmards or a biologic, it doesn’t preclude working on some of the nails in your feet. Some people have many nails and pulling them one at a time is necessary. You probably already know this! You’re living it – but it can be done and takes a lot of self advocacy.
Thanks for your response Maz. I think I listed everything I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T3. I had a biology of functions blood test done and almost everything was out of range….some things like histamines were very high. My hormones were also out of range and I just started bioidentical progesterone a week and a half ago. Currently I take krill oil, biosil, glucosamaine/condrotin/msm, phytoplakton, collagen, 5 billion probiotic, B12, VIt c and I just started Cortef (5mg).
For detox I do epsom salt baths, lemon water, and in the past I’ve done Coffee enemas. I do have a dairy allergy. I’ve had my silver fillings removed. I do have mold toxins which my llnd tried to work on first but I got a lot worse. My second mold test results were highter than the first test, due to the mold being pulled out of tissues. That could be my issue,but I can’t seem to do anything to get it out. My LLND doesn’t want me to use a sauna since he says that will really stir the toxins up. The one time I tried I developed a lot of small bruises on the back of my calves.
I don’t know if I have babesia. I have a lot of chest pressure when herxing. Even when the osteopath works on me and pushes on my chest, I will have chest pressure.
I am gluten, dairy and sugar free. I eat very few grains, no caffine or alcohol.
Yes, I wish I could figure out what to do to detox. It seems like the herx builds and builds even on very small amounts of supplements or antibiotics. I tried 1/8 capsule of folinic acid every second day and couldn’t tolerate it. THanks for your help.
The LLND that I am seeing comes highly recommended but he hasn’t been able to do anything at all for me. I only get flares and more damage. I don’t feel that the rheumatologist I am waiting to see will do much either or even understand how to help.
I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T
Thanks for your response Maz. I think I listed everything I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic.
Thanks, DMW. Quick tip: if you could put everything you’ve detailed in this post in your signature line, in brief, then it should help to get responses without having to re-detail everything again. Very easy to do. Just hover your cursor over where it says, Hello DMW, on your screen, found in a corner of the page. You can then select your Profile to edit your signature and it will show up at the foot of every post. Just saves you time really. 😉
Noted from your supps that glutathione-promoting strategies are missing. Have you tried curcumin, liposomal glutathione or glutathione IV pushes, NAC? See you have dairy sensitivity below, so non-dentatured whey protein would be out, but some brands of bovine colostrum might be okay if casein-free. Glutathione is very anti-inflammatory and also helps with chelating heavy metals and general detox.
I have been clinically diagnosed with Bartonella and mycoplasma.
This could be a significant issue – bartonella is a devil and can cause all kinds of neuro and sensitivity issues. Combined with Lyme and mycoplasma, it’s quite a mix. 🙁 There is a LLMD rheumy in Maryland, if you’re interested to move in a new direction, who specializes in bartonella.
My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic).
To my fellow patient knowledge, the indeterminate readings on double-starred antibody bands of the western blot are pretty significant, because none would show up if a person hadn’t been exposed to the borrelia antigens.
I have high reverse T3 and low T3.
Do you take a thyroid hormone replacement medication? If so, which type? Your thyroid labs might be another problem, because a low T3 and a high RT3 means your body is putting the brakes on converting T4 (storage hormone) to T3 (active hormone). Actually, asking the doc to run Free T3 and Free T4 might be more telling. Reverse T3 is like the brake on a car, so I understand. It usually causes a problem when a person has low ferritin (should be above 60 or above 80 if there is hair loss), low D3 (should be above 50), low B12 and lots of inflammation. So, controlling the inflammation is definitely where you know you need to be going with this, because hypothyroidism causes all kinds of issues, including allergies and hypersensitivities, but also joint, tendon and muscle pain, even without a rheumatic disease. Double whammy, so to speak. According to a thyroid chart I have, Free T3 needs to be in the upper quartile of the range. Free T4 should be in the middle of the range. Reverse T3 needs to be below 10 (but ratio of RT3/FT3 is most telling) and TSH around 1. Do you have autoimmune thyroid issues or just sluggish thyroid? If autoimmune, healing the gut is pretty important and you already avoid gluten, which cross-reacts with thyroid tissues, but some gluten can creep in if not cooking everything from scratch.
I had a biology of functions blood test done and almost everything was out of range….some things like histamines were very high. My hormones were also out of range and I just started bioidentical progesterone a week and a half ago. Currently I take krill oil, biosil, glucosamaine/condrotin/msm, phytoplakton, collagen, 5 billion probiotic, B12, VIt c and I just started Cortef (5mg).
The histamine level is a good sign you’re reacting to something in the environment or to what you’re taking. Do you use an anti-histamine? Dr. Brown used Benedryl during hypersensitivity reactions. There is a transcript of a presentation he gave on this on the site here:
Some Lyme patients wind up with environmental illness, which is why some LLMDs won’t allow patients into their clinic wearing strong perfumes, soaps, etc. Definitely getting adrenals into shape can be a large part of the picture, too, because the endocrine system is like an orchestra that works in concert and when one gland goes out, others can follow. Being so ill alone is very stressful on the adrenals.
For detox I do epsom salt baths, lemon water, and in the past I’ve done Coffee enemas. I do have a dairy allergy. I’ve had my silver fillings removed. I do have mold toxins which my llnd tried to work on first but I got a lot worse. My second mold test results were highter than the first test, due to the mold being pulled out of tissues. That could be my issue,but I can’t seem to do anything to get it out. My LLND doesn’t want me to use a sauna since he says that will really stir the toxins up. The one time I tried I developed a lot of small bruises on the back of my calves.
If you haven’t had heavy metal testing, it might be a good time to research think about it. Heavy metals also contribute to persistent infections holed up in biofilm and the mercury in fillings are neurotoxic, especially when they begin to break down and off-gas. If not removed properly, this can add to the load. It’s why dentists must dispose of silver fillings as biological hazard waste, because it needs to be disposed of very carefully so that none gets into the environment. Mold is another neurotoxin and can be a nasty one at that, so as you’ve said, you’ve identified this as yet another nail in your foot.
I don’t know if I have babesia. I have a lot of chest pressure when herxing. Even when the osteopath works on me and pushes on my chest, I will have chest pressure.
This might be worth discussing with your LLND. There are a couple of more common strains of it and she might be open to getting you tested.
I am gluten, dairy and sugar free. I eat very few grains, no caffine or alcohol.
Yes, I wish I could figure out what to do to detox. It seems like the herx builds and builds even on very small amounts of supplements or antibiotics. I tried 1/8 capsule of folinic acid every second day and couldn’t tolerate it. THanks for your help.
I use Super Liquid Folate in a dropper and my LLMD warned me to start low and slow. The folinic acid is normally given to those on methotrexate, which you didn’t mention, so wondering why this type? Has your LLND tested you for MTHFR…you might have already mentioned it above, but trying to remember. In any case, folate can create some issues if given in too high a dose and it’s just harder to guesstimate with capsule splitting or pill cutting. Drops under the tongue have been easy to titrate to tolerance for me.
Just some ideas for you, DMW. I’m no expert, but these things popped to mind as I read your post and hope it might be helpful in discussions with your LLND. If you’re thinking of switching docs, there are others in BC and one in Ontario (long wait list for her), but also down here in the US. So, if you want further listings, just PM me.
Thanks for all of the info, Maz. Would the LLND rheumy in Maryland do phone consults? I could get my LLND to prescribe.
I have tried for Lyme…minocycline, Cowden protocol, and cannabutter. I’ve had a herx with Folinic acid, magnesium, moducare, xylitol, apple cider vinegar, TADS (adrenal support), activated charcoal, LDN, herbal made by my LLND and a 50 billion probiotic. I have been clinically diagnosed with Bartonella and mycoplasma. My Lyme testing was inconclusive-band 41 was double starred and I had about 4 indefnite…but I was also on cannabutter at the time (a natural antibiotic). I have high reverse T3 and low T
Thanks for all of the info, Maz. Would the LLND rheumy in Maryland do phone consults? I could get my LLND to prescribe.
Some LLMDs do patient and Doctor phone consults and others don’t, so you’d have to call the rheumy LLMD’s office to ask, I think. I’ll send his contact info via PM to you, in case you want to check it out with his office, but thinking he is more allopathic in approach…so a LLMD rather than a LLND.
Hi Maz–
The ND probably stands for Naturopathic Doctor. Mine is also Lyme Literate.Happy Holidays!
TrudiLyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Hi Maz–
The ND probably stands for Naturopathic Doctor. Mine is also Lyme Literate.Happy Holidays!
TrudiThanks, Trudi….DMW was referring to the rheumy LLMD in Maryland as a naturopathic LLND, so I was just letting her/him know that I am pretty sure he is allopathic. Thanks for chiming in, though, and a very happy holidays to you and your loved ones, too! May 2016 be a year of renewed health and wellness for all here!
You must be logged in to reply to this topic.