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I fell ill last June shortly after dental work. My main symptoms were throat infections, deep muscle aches, unrelenting fatigue, and an overall feeling like I was toxic and may slowly die. I was put on over 8 different antibiotics and while they seemed to help for a few days my throat infection and all my other symptoms would return. ( Please note that my muscle aches didn’t start until I was put on azithromycin for my throat infection which I find odd!)
It wasn’t until I finally met a doctor who told me I should get my root canal teeth extracted by a biological dentist. I first received root canals back in May right before I got sick.
I got all 3 extracted in early October and my health seemed to improve by about 50%. Although during my extractions I was given clindamycin, started oil of oregano and colloidal silver so it is hard to know if the extractions contributed to my healing or if it was just coincidence.
In any case, I hit a plateau about a month ago and I just don’t feel like I’m getting any better. I still have deep muscle aches daily and am so tired. Luckily the throat infections haven’t been back. I found an AP doctor who started me on MINO Monday. Since starting , I feel much worse. My aches are worse than ever today, I have a headache, I can’t stop crying. I’m so scared I’m not going to get better. I am only 28 and can’t imagine living my life like this. I noticed a lot of people on this forum battle RA and joint swelling, none of which I have. I have a “mystery illness” which is driving me crazy and I’m not sure if AP will work for me. The only abnormal blood results I have are an ASO of 350, Igenix lyme test which isn’t positive, my IGM results were : 18+ and 41+ and the IGG 41++ all other bands for both were negative or indeterminate. Lastly my mycoplasma pneomia igg is 725. She just retook that one to see if it rises and only then does she feel it’s significant
I am at a loss at to what to do next. Do I continue the mino? Any other suggestions?
Thank you.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
I found an AP doctor who started me on MINO Monday. Since starting , I feel much worse. My aches are worse than ever today, I have a headache, I can’t stop crying. I’m so scared I’m not going to get better. I am only 28 and can’t imagine living my life like this. I noticed a lot of people on this forum battle RA and joint swelling, none of which I have. I have a “mystery illness” which is driving me crazy and I’m not sure if AP will work for me. The only abnormal blood results I have are an ASO of 350, Igenix lyme test which isn’t positive, my IGM results were : 18+ and 41+ and the IGG 41++ all other bands for both were negative or indeterminate. Lastly my mycoplasma pneomia igg is 725. She just retook that one to see if it rises and only then does she feel it’s significant
I am at a loss at to what to do next. Do I continue the mino? Any other suggestions?
Thank you.
Darling, your symptoms since beginning minocycline sound to be classic for herxing, but suggest you read the FAQs in the section, “After Starting AP,” in order to decide for yourself if this makes sense, given your condition:
https://www.roadback.org/faqs/?faq-category=35
Early worsening, as rough as it can be, is expected and a good sign the treatment is working. However, you should report anything that concerns you to your doctor. E.g if headache becomes unbearable, as dose may need an adjustment.
If this helps, the hallmarks signs of herxing for me were exhaustion, depression and feeling weepy, in addition to a worsening of joint and muscle pain symptoms I already had. I always reflect back and wish I had known more about detoxing back then, because the flood of endotoxins from dying bugs is what causes all this and they need to be flushed out of the body pdq.
Aside from the activated charcoal, what are you doing to detox?
I think most of us here can empathize with your pain as we’ve experienced it, too. In my case, herxing went on for several months, but for others it can be more transitory. I read the book 4 or 5 times in my first year…in addition to the support and encouragement of my doctor, the book really helped to keep me going.
Hi,
Yes, you are likely experiencing the effects of “die-off” reactions. Since you are taking 100 mg of minocycline twice daily every day, you will most likely need to cut back on your dose — temporarily (for at least a few months). That dose is usually too high for someone just starting, with the possible exception of people with scleroderma, and even some of them may need to temporarily reduce the dose.
“For patients with less severe or early disease, the IV or IM treatment may not be required as they experience the same result using oral medication exclusively. The optimum standard dosage for these patients is minocycline or doxycycline 100 mg. once daily, Monday, Wednesday and Friday or tetracycline 250 mg. twice daily Monday, Wednesday and Friday.”
Source: Tetracycline Therapy
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinThank you both for responding. I will ask my doc about maybe adjusting my dose. I hope I’m under the right guidance from my doctor. The headaches are bearable so far. I just worry because I already have bad depression and anxiety ( on Zoloft) and I cant believe how emotional I feel on the mino! I hope this is herxing but I am so scared it’s just me getting really sick again. When I replay all the events from the summer when I first got sick it was so strange it was when I was ON antibiotics did I start getting these aches…so sometimes I worry it’s the antibiotics that might be making me feel sick. I have read the book but I will read it a second time. Again, because I don’t have the classic RA symptoms I feel like my case is different which makes me feel like AP may be more experimental and may not work!
As far as detoxing…I’m really not taking anything. Ive read that if you have metal fillings charcoal will pull the particles from the fillings and stir things up. I don’t know what other binder I should use? My doc thinks we should start slow. See how I do on abx for a month then add some other things in.
Luckily I am able to exercise and use the steam room. I will say , I was previously drinking quite a bit to cope with my depression and pain. All of which I cut out a week ago.
Thank you.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
darling – I agree that your symptoms sound classic for a herxheimer “die off” response. Whilst herxing is regarded as a good sign that the antibiotic is working, the idea is to keep it within tolerable levels. In reducing your dose, it is common to have a week’s washout, then re-commence at the lower amount. The week’s washout is because that is the time the half life of the drug continues to be in the system and this allows for a ‘fresh start’ at the lower dose.
An important guideline in successful treatment has been the avoidance of over-medication with paradoxical worsening. Too much medication can cause a delayed hypersensitive reaction to the drug itself and induce a flare of the arthritis with the development of symptoms closely mimicking the disease (Herxheimer Reaction). A therapeutic balance can be readily re-established by the temporary interruption of the treatment for a week and then restarting at the same low dose.
Antibiotics in this case are being used differently to when treating an acute infection – when they are taken in substantial amounts for a relatively short period of time. In this case, a chronic condition is being addressed and it’s a ‘long game’ approach. The best thing you can do for yourself is read and educate yourself as much as possible about this approach to treatment, so that you can partner with your Doctor in your treatment. It can make a real difference to how you feel.
Drinking lots of purified (bottled, boiled) water (up to 3 liters a day) is a great start to de-toxing, it helps flush the toxins from the body. If it were me, I would also take it easy on the exercise front and keep it gentle. With extreme fatigue and deep muscle aches, strenuous exercise may exacerbate your symptoms.
Hang in there!
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)Hi,
Although during my extractions I was given clindamycin, started oil of oregano and colloidal silver so it is hard to know if the extractions contributed to my healing or if it was just coincidence.
Are you still taking oil of oregano and colloidal silver?
As far as detoxing…I’m really not taking anything. Ive read that if you have metal fillings charcoal will pull the particles from the fillings and stir things up.
I don’t think that’s something you should be concerned about. If the charcoal is in capsules, how could it possibly have any effect on your fillings? The problem with charcoal is that it can absorb drugs and vitamins as well as toxins. So it is very important to take it well away from one’s medications and vitamins. I’m not really sure when is the best time to take charcoal. What some people do is take their charcoal in the middle of the night — when they wake up to use the toilet, they use the opportunity to take their charcoal.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI took a break from the Oil of Oregano and Silver. This past week I hade 4-5 days of no body pain which is the longest since I’ve gotten sick! Unfortutately all the pain returned 2 days ago. Is it normal for the Mino to feel like its working and then have a few bad days again? Overall, aside from headaches I seem to be tolerating it well.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Is it normal for the Mino to feel like its working and then have a few bad days again? Overall, aside from headaches I seem to be tolerating it well.
Very normal! See Faq #26 here: https://www.roadback.org/faqs/?faq-category=35
26. How long before I start to see improvements?
Early, objective signs of improvement are widely variable across the AP patient population and are not usually experienced in the first several months of treatment or until herxing has died down. After this period, incremental improvements usually begin to occur. At first, these improvements may be barely noticeable, lasting only for an hour or two per day. Fatigue and depression may be the first thing to decrease and morning stiffness may start to subside. Patients may then begin to have one or two “good days” and, over time, these should increase, with longer periods of feeling better between the “not so good” days. Patients have described this journey as being a bit like a dance—that is, taking a step or two forward and then one back. The goal of AP is to gradually retrain the immune system to enable rheumatic tissues to respond less violently to the “bacterial allergy.” With careful attention to individualizing the patient’s treatment, a balance can be achieved to slowly decrease the pathogen load while also ensuring gentle elimination of the inflammation-inducing toxic substances (antigens) released by the dying microorganisms.
Each patient’s path to wellness will be unique and progress is rarely linear, with ups and downs as treatment continues. Many diverse factors influence how quickly a person responds to treatment. Men, in general, seem to respond to treatment more swiftly than women. Age, severity, disease duration, use of other drugs, hormone imbalances and unaddressed infections (e.g., tick-borne diseases, streptococcus, chlamydiae or Candida) may all play a role. In some cases, it can take patience and self-advocacy to identify and correct lifestyle factors (e.g., smoking, poor nutrition, stress, lack of sleep) that may also be interfering with progress. Some patients may not experience any noticeable signs of improvement until after a year or more, while others may begin to feel better within weeks.
In the most entrenched and recalcitrant cases, it can take up to thirty months from the beginning of therapy until the patient clearly turns the corner toward improvement, and the achievement of lasting remission can take several years….In shorter-term cases – and short term doesn’t necessarily mean less severe – complete remission can be achieved in less than six months. —The New Arthritis Breakthrough, by Henry Scammell, pages 269-270
And also the info in the Pulsed Protocol literature, here:
First signs of improvement
There is usually little objective improvement in patients during the first three months of therapy. In the ensuing three to nine months the improvement, when it occurs, is quite gradual. The course of events is similar to, although sometimes slower than that noted with gold methotrexate or chloroquine therapy. The first sign of improvement is usually a lessening of duration of morning stiffness although the initial onset may be as severe as usual. The patient notices a general feeling of well-being lasting initially for perhaps an hour or two and gradually increasing to more good days and fewer bad days with a longer time span in between. As antimycoplasma therapy continues, toxic substances are gradually reduced and normal functions begin to return. Strength increases, blood count rises to its normal level, mental acuity, ability to concentrate, a return in interest in work and a lessened sense of irritability all become noticeable dividends. All these symptoms may improve remarkably with rheumatoid remission, even after having been present for years. It has been possible to measure clinical and laboratory parameters for the degree of disease control over a five year period. During this period over 70 percent of patients treated showed sustained improvement after five years. A major advantage of this approach has been the freedom to treat early rheumatoid arthritis in a basic manner with success.
Thanks Maz for the links. Unfortunately my pains have been pretty constant for about 1.5 weeks as with the fatigue. I am barley getting through work and I’m about to sign another 1 year lease in NYC. My fear is that I will not be able to make it . It feels like every minute of every day I am fighting to just make it…like I’ll collapse. I’m starting to become very worried that the stress of all of this, working full time, major depression will push me over the edge. Deep down inside I think I need to take a lot of time off but with the cost of new teeth and healthcare bills I just don’t see it as an option.
I know I need to cut off alcohol , caffeine, gluten sugar…which I seem to do for a few weeks here and there but cave because I don’t notice a difference . I’ve also been on 50mg of zoloft now for almost 6 years and I’m wondering if that drug is contributing to my issues. I’m wondering if there is anything I can try first to fight this fatigue? I think my biggest problem is not sleeping through the night. Anyhow, thanks for listening.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
I think my biggest problem is not sleeping through the night.
darling, one thing you might consider is phosphatidylserine. It has certainly assisted me, recommended by a good Functional Medicine practitioner. My cortisol levels were much too high in the evening which made restful sleep very difficult. One of the qualities of phosphatidylserine is to suppress the production of cortisol. I take a capsule about 2 hours before I want to go to bed. Have noticed that the versions of this that are in a complex form don’t work for me, just phosphatidylserine by itself. Suggest you research it – it’s often used to help with cognitive function (and that’s mostly the complex form of this sup) but it is also suggested for insomnia, where cortisol levels need management. Another thing that you might like to research for sleep issues is Cortisol Manager, something my AP Doc suggested. I haven’t tried this myself, but have heard it’s good.
Hope you find some answers to the sleep issue – a good night’s sleep both helps the body heal and makes a big difference in being able to manage whatever the day throws at us.
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)Thanks Lynnie. I think I’ll give that a try.
On a side note I saw my AP doc today. My m pnemoniae igg came back very elevated . Initially it was 725 and a few weeks later 1053. My Lyme back 18 is also positive so my doc definitely thinks it could be Lyme with co-infections. Anyhow I’m feeling really overwhelmed and scared . My AP doc wants me to try an herbal tincture in addition to the mino to see if it will help. The tincture is called MC-bar-1 and include cats claw , Oregon grape root and a few other things I’ve never heard of . I’m still feeling pretty awful and am just so desperate to feel some relief. I am somewhat relieved I now have blood work maybe supporting my symptoms but I still am unsure what it all even means . Are people able to successfully cure mycoplasmas? Is there anything else I should do? Thank you!
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Hi
My AP doc wants me to try an herbal tincture in addition to the mino to see if it will help. The tincture is called MC-bar-1 and include cats claw , Oregon grape root and a few other things I’ve never heard of.
It’s quite possible that adding that tincture to your minocycline could make you feel worse, not better.
I’m still feeling pretty awful and am just so desperate to feel some relief.
Are you still taking 100 mg of minocycline twice daily, every day?
Is there anything else I should do? Thank you!
Are you taking anything for pain relief?
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinI really need some support . Over a month ago I stopped the mino because I felt the heartburn and feeling unwell wasn’t worth it . Shortly after stopping I started feeling so much better up until last week when I had the worst vertigo of my life and went to the ER. Since the episode I’ve felt almost as sick as I did when first fell ill last summer. My throat infection has come back, I’m having ongoing lightheadedness, relealization. My AP has since started me in Zithromax 250mg twice per day. I’m on day 3 and I’m having the worst anxiety of my life . I feel like I’m losing my
Mind . I can’t think straight and feel so unstable . I started researching the side effects of Zithromax and have read people can get psychosis . I worry because I’ve had depression for years even before I got sick. I’m also very worried of heart issues . The ER told me I had somewhat low potassium and I read people with low potassium are at risk of the heart issues on zithro. I don’t believe my low potassium is chronic so not sure if this is a concern but tonight alone I’ve had over 15 heart palpitations. I feel so scared and alone. Do I continue with this antibiotic . Is this a herx? Pls help. Thank you.Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
I also want to add my blood pressure is 140/90. When I first felt muscle pains when I first got sick last summer it was after I took the zith. After that bout is when I got so so ill and was put on over 9 different abx for the incurable throat infection. I’m hoping my body doesn’t have some weird toxic reaction to it.
Sick since July 2015 with deep muscle aches, fatigue, and ongoing throat infections. Since July was on 10 different abx .Found AP doc for long-term abx therapy in Jan 2016. Started Mino and other herbals. About 60% better. Positive for mycoplasma, strep (ASO 400), and possibly lyme. Current Meds: Vit C, D, b12, Glutatione, l-glutamine, colloidal silver, fish oil, magnesium, multi, herbal tincture with cats claw , Oregon grape, blessed thistle...mino 2/16-3/16 now trying penicllin
Hi darling,
I just came across this article describing adult PANDAs and wondered if it might resonate with you and the symptoms you’re experiencing in light of your elevated ASO titer?
https://www.psychologytoday.com/blog/attention-please/201501/adult-pandas-seek-and-ye-shall-find
Your low potassium also made me think about the chance of being hyperthyroid. Lots of thyroid patients have electrolyte imbalances and this is why it came to mind, because it’s an oft-overlooked issue in women, especially in the case of normal thyroid labs but hot thyroid nodules, which can also cause symptoms you’re describing. I got diagnosed with 5 hot nodules, but only after an ultrasound that caught them and then a RAI scan that visualized that they were “hot” and producing random shots of thyroid hormones, independent of pituitary function (hence the normal thyroid labs). There are other causes of hyperthyroidism, such as thyroiditis (transient inflammation of thyroid caused by infection) and Grave’s disease (autoimmune thyrotoxicosis), for example, and as you haven’t listed thyroid issues in your signature, just wondering if it might be worth checking this out? Many people get put on anti-depressants when they have overlooked thyroid issues.
http://www.livestrong.com/article/491610-low-potassium-thyroid-relationship/
Just some thoughts to consider….also did your llmd also test you or suspect babesiosis?
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