First week on Minocycline

[Vincentpre23]

Hi everyone this post is long overdue. The members at Roadback have been so helpful to me and I hope writing about my experience can help others. I’m 34 and have been healthy and fit for most of my life but in April of 2019 I developed a Pneumonia. This was treated with Zithromax and five days after my last dose , after a very physically draining work week I woke up with debilitating joint pain all over my body. At the time I did not realize but had developed Raynaud’s Phenomenon. My rheumatologist thought it could be reactive arthritis , all my blood work kept coming back normal, including normal inflammatory markers. Ten months went by and although the joint pain got better I developed other troubling symptoms. Acid reflux, dry eyes, tightening of skin on hands and feet , gums receding . When winter came and the Raynauds became obvious my rheumatologist tested me for scleroderma. It all came back negative but she wrote me a referral to a scleroderma specialist. There he checked my nail folds and pinched my skin and said I did not meet the criteria for a Scleroderma diagnosis and told me I had UCTD. We spoke about possibly treating with MINOCIN but he quickly put it down and was more supportive of Planquenil.

Realizing that I would only be diagnosed once the symptoms would become blatantly obvious I decided to act. When I retested my ANA by IFA method it finally came back a low positive 1:40 with speckled pattern. I found a Functional Medicine Doctor with some experience in treating with Minocin. I was never interested in mainstream treatments from the beginning but felt that I needed a diagnosis to take action. I know now that McPherson Brown’s views on this was different, and because minocin is relatively safe compared to mainstream drugs he initiated treatment before the disease caused major damage.

I am in week one of 100mg Minocycline per day generic by PAR and my hands and feet are swelling like they were back when this all started. My joint pain has worsen but the odd thing is I am no longer fatigued. This could be placebo but I have not felt this good in over a year . I have been following a Paleo diet prior to this which has helped tremendously and will notice that when I eat gluten and dairy or sugar heavy foods my hands and feet start to swell.I eat fermented foods and take 200 billion probiotics each day. I was also instructed to take Sacharomyces boulardi with the minocycline. My joint pain is mainly in my knees, right ankle , and I have pain in the balls of my feet. The muscle weakness and cramping in my legs are one of my worst symptoms. My FMD has designed a detoxing program which I hope helps with the process of healing. She is focused on killing pathogenic bacteria and restoring the gut wall. She believes as I do that the microbiome is at play in autoimmune condition.

I want to thank the board members at Road back for all their help. If anyone has questions or if I could be of any help please reach out . I will post updates on my experience as often as I can.

4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHM

[Lynne G.SD]

Hi Vincent;
This is a long term therapy and it sounds like you are getting a dose of the famous HERX.Hang in!I have been on AP for 20+ years and am doing just great but must admit that it took almost 4 years to get to this point.Herxed like crazy for the first few years ,finally I found out that I had Lyme to thank for getting SD since it caused the immune system to crash.Every time I would add an other antibiotic or change the dose it would happen so I just sucked it up for what seemed like an eternity.

[Vincentpre23]

Hi Lynne,

I wonder if I have Lyme myself. I have tested negative multiple times with quest diagnostics but will retest with Igenix. Thank you for sharing your story and I’m happy you are doing well. I am elated at the fact that this therapy is working for me . I gave it a 1 in a million chance but I am convinced that at least in my case, the disease is caused by a bacteria. I will work towards achieving complete remission and hope to one day be drug free. My energy has returned and I now believe I have been sick for at least a few years. It feels like my body is waking up from a depression. It’s weird to describe and although I’m in more physical pain I feel so much better! May I ask how far along you were in your diagnosis before you initiated AP? Do you have any antibodies? Do you have any side effects from long term use of the mino? Thanks again Lynn!

4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHM

[Lynne G.SD]

Hi Vince
All I know is that I have SLC70.I was diagnosed long before antibodies were the “in”thing.Found out about Pwhen I was getting pretty well mummified.I used to be an archeologist and was in more holes than I care to think of and there certainly were no preventive measures for contaminated dust,dirt or anything else such as bugs that I could not even identify.It was great fun and today would never pass any safety measures. hehehe.No problem at all with the mino other than having a lot of blue spotting that takes years to leave.I have been off mino for over 4 years and the discolouration is down about60%.I get the feeling that doxy causes the same problem but to a much lesser degree.
Have you seen this site?
World Lyme Alliance

[Calida]

Ah, 2 familiar faces, one new (Hi Vin!), and one from the past (Hi Lynne!)

Well, Vin, the LLMD I recommended didn’t pan out so we’re back to square one. If you read my post from today, you’ll see you are in a better position with your functional doc than my husband is with the local LLMD. I may reach out for the name of your functional, if you don’t mind. Doing nothing is driving us mad.

So happy to see you both!
Calida (Kelly)

Dx: Diffuse Systemic Sclerosis/SLE overlap, Raynaud's June 2013, Lyme August 2013
AP: Azithromycin (Teva) 250mg BID, May 2014, Clindamycin 600mg every 8 hours for 2 weeks July 27, 2015 - Aug 10, 2015
Minocycline (Teva generic) 100mg BID November 20, 2014
Meds: LDN 3.5 mg, Prednisone 5 mg (discontinued), Aspirin 81mg, Liposomal Artimisinin 50mg QID x 3 weeks, 4th week off, rotating (discontinued May 2015, restarted 2016 7 days per month), Daily Nystatin, 2 tabs BID, as a preventative measure
Supplements

[Vincentpre23]

Hi Kelly,

That’s unfortunate she didn’t work out . Just reach out if you want more information on my doctor. I’ll try to help you as much as I can!

Hi Lynne ,
Thanks for the website I will look into it . I’m glad you did well on the mino with low side effects . I’m hoping I got out in front of this before too much damage has taken place and I will be able to sustain drug free remission eventually. I think with further testing and a knowledgeable FMD anything is possible .

4/19 symptoms onset
UCTD , 1:40 ANA Speckled, Now negative
Mycoplasma P IGG IGM, EBV, HSV1, Igenix Bartonella IGG
Doxycycline 100mg b.i.d. , Bactrim ds 960 mg b.i.d. , Biodisrupt, fluconazole 100mg q.d , Monolauren, Visbiome probiotic 112.5b b.i.d ,B-complex, Vitamin D , Quercetin, saccharomyces boulardii, raw garlic , paleo, WHM

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