November 20, 2017 at 8:51 pm #461072
First of all- thanks to all who encouraged me last month, I’ve been feeling great! Mainly just dealing with mild joint pain and morning carpal tunnel these days- about 90% back to normal. I never thought I would feel this normal again. So grateful to the volunteers on this site.
I see an LLMD who would like me transition to herbals after I’ve felt this way about 3 more months. I trust her- she seems to be really know her stuff, but I’m super hesitant to stop using ABX bc I feel more like a Rheumatologicsl patient than a Lyme patient.
The only reason I’m even considering it is that I’d like to have a second baby and will need to get off tetracyclines beforehand. Does anyone have experience with herbals? Is it a bad idea for rheumatologicsl patients?
Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, aziNovember 20, 2017 at 9:32 pm #461073
You and I seem to have very similar symptoms, based on what I have read of your posts.
My Llmd, who I also trust and who knows how to treat Lyme very well, has also made some suggestions that, after familiarizing myself with Dr browns protocol for scleroderma, I was not comfortable doing. For example, she wanted me to go off the mino every 2 weeks and then be on it for 2 weeks in pulses. I had to explain to her that while I understand the logic behind pulsing abx for lyme, it’s a different case when the mino is being used to treat something like scleroderma. So as much as I trust my Llmd I am very stubborn about staying on the mino and staying on the Harvard protocol.
Given your symptoms, i would not go off of the mino anytime soon, especially since you aren’t even completely symptom free at this point. It really does not seem worth the risk.
I think llmds can really know how to handle regular non-rheumatic patients, but may not have a solid understanding of Dr browns abx protocol and so may recommend things that while would be fine advice for a normal patient, may not be the best advice for someone with our very specific conditions.
My current Lyme and Bartonella treatment
from my Llmd does include an herbal. Iam on mino constantly, I am pulsing azithromycin every 2 weeks, and next week will be adding in oil of oregano. I will let you know how that goes.November 20, 2017 at 11:14 pm #461074MazKeymaster
I second what Pinkmoth has said…very wise input. It’s just not worth the risk with SD to stop minocycline and recouping lost ground can be quite tricky. Also, if planning on a second pregnancy, with Lyme, its wisest to remain on abx (not tetras) throughout gestation to prevent fetal transmission, as per what the medical experts generally advise.
So wonderful to hear you’re doing so well! You are such an inspiration to newcomers and I hope you will continue to visit to share your wisdom. I was beyond childbearing when I got so sick with Lyme/RA, but you have first hand experience of treating SD while pregnant and this type of experience is invaluable for young women with SD who hope to successfully carry children. Thanks for being here, Kat!
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.November 21, 2017 at 10:18 am #461079
You guys are the best! I posted this question on a Lyme and Pregnancy Forum and most people responded that they didn’t even think that there were many herbal treatment options that were pregnancy-friendly. I know the azithromycin/ceftin combination is at the very least not harmful to my unborn child and I’d rather stay on something that has been tested and that I was on during my last pregnancy.
After I started on mino, I was amazed at how fast my skin loosened. Even though I could not pinch skin on my calves, thighs, and most parts of my trunk, but Drs totally blew me off b/c I was pregnant the skin on my fingers was loose. Now all of it is VERY pinchable and I developed these wrinkles on my face that belong to a 78 year old, not a 38 year old. I will take it to feel as well as I feel now.
Pink Moth- how are you doing? You also had some pretty immediate success with minocycline if I am remembering correctly?
Maz, please feel free to PM me if there are new members who want to talk about AP during pregnancy. I am happy to be a resource. Do you have my email? If not, I can PM it to you.
Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, aziNovember 21, 2017 at 10:54 am #461082
I have a lot of experience with doctors blowing off my skin tightening as well, so I’m right there with you.
The mino also made my skin loosen very fast. But then I would notice that certain things I would eat would seem to trigger more tightening. So every day was a cycle of tightening/loosening for a few months.
The last month I have had almost no skin reactions whatsoever, skin is very normal and loose (and very aged/wrinkly in the places it was tightest, which for me was fingers). Biggest problems now are tendonitis from elbows down. This problem had gone away for a good while, as well as the calcium deposits on my wrists, but it has crept back up and seems to be worsening. Calcium deposits have also reappeared. I suspect too much starch and sugar in my diet, because when i was eating super clean is when these problems went away. But have been more lax with the diet lately since I was doing so well (I’m sure it’s a mistake many make!) I hope you’re experimenting with a modified diet as I think it was critical to my improvement.
I think the Oil of wild oregano counts as an herbal (unsure on this) but it is very potent stuff and i wouldnt know whether or not it would be any safer for a pregnancy than a standard abx. Johns Hopkins just did a trial with it against lyme and showed it to be pretty effective against persistor forms of bacteria. https://www.biorxiv.org/content/early/2017/05/17/130898 My LLMD is who told me all of this and recommended that we start adding that in to treatment because, while like you I have seen drastic improvement, it doesnt seem either of us is 100% yet and it is clear there is still an infection present. I will let you know how I tolerate the oil of wild oregano and what kind of improvement I see on it, because it may be something you might want to talk to your LLMD aboutNovember 21, 2017 at 4:25 pm #461087
Pink Moth- any chance you also has a bad case of food poisoning? I am going down that rabbit hold right now because it seems like a potential trigger for me.
Interesting that your biggest current issue is tendonitis. I had that last winter, bilateral tendonitis in my arms that came and went. I now really only deal with light neuropathy and mild joint pain and carpal/cubital tunnel. Some of the nerve issues can possibly be from overuse in holding my baby.
Either way, it is encouraging to hear from others who are dealing with similar issues. I will definitely consider Oil of Oregano as my Dr gets serious about getting me off minocycline. I wish that I wasn’t 38 and could wait a few more years for these bugs to clear up a bit more before needing to get serious about a second child, but unfortunately I don’t have much time. I am sure that I will popping by to further discuss my options as the time TTC again gets closer.
Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, aziNovember 21, 2017 at 4:30 pm #461088
I’ve spent a lot of time down the rabbit hole of figuring out all the potential sources for initial infection for myself, but in my case it could have been so so many different things. I keep various exotic animals, gut and clean meat animals as well. I’m also out in the forest a lot, chest-high in ferns and on deer trails, right where the ticks like to be. It could have been from food, but I dont have any recent recollections of food poisoning. It’s more likely from tick or other animal contact in my case (Lyme and Bartonella).
My tendonitis is also bilateral and causes carpal tunnel for me also, my hands are usually numb when I wake up. This used to be much worse before I started abx, then as I mentioned it went away for a while, but is now back. If yours came and went I’m hoping mine will go away again also.
I agree, it is very encouraging to talk to others with similar situations.November 21, 2017 at 5:33 pm #461089richieParticipant
A very common symptom in scleroderma is tendon rub —massaging tendons and keeping them loose as possible will perhaps prevent snapping !!!!!November 22, 2017 at 4:31 am #461090lynnie_sydneyKeymaster
Be very careful with oil of wild oregano. It is very potent stuff. I tried it several years ago. Just 2 drops in water and within an hour I was in bed with bad flu like symptoms and crushing fatigue. Same thing happened a few weeks later with a single drop. Doc guidance on this as part of any protocol would be a good idea. Herbal doesn’t always mean gentle.
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2007 100mg MWF - can no longer tolerate mino/doxy
abx: MWF a.m. Augmentin Duo (1/2 x 875mg) + 250mg Klacid p.m. Cefaclor (1/4 x 375mg) + 250mg Zithromax. Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, CoQ10, P5P 40mg, zinc picolinate 60mg, B3 1000mcg, EPO 1000mg, Lithium orotate 20mg, Magnesium Oil equiv 400mg
Topical bio-identical estradiol + DHEA caps + Progesterone caps
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