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Well, I don’t know what I have. 48 yrs female, Joint pain started four years ago in knees, then progress to elbows, shoulders, hip and fingers. Following the rheumatologic route for a couple of years, all blood works are normal, tried tons of meds with no success, MTX, plaquilel, and three biologics, etc. I am basically bed ridden and am losing my hope after so many years. Now I am going to try antibiotics even though I don’t have positive tests for anything, but not sure which way I should go – lyme treatment or RA treatment.
Whether some of us test positive for lyme or not, many of us are treating our presentations of rheumatic diseases with antibiotics, because it seems that a whole host of different infections can trigger the onset of our symptoms.
It’s good if you are able to find a doctor that can help pinpoint these infections by finding a Lyme Literate doctor in your area ( https://www.roadback.org/resources/doctor-search/ )But even when some people never figure out what the precise underlying infection is exactly, when they treat with minocycline in the way that Dr Brown suggestions, improvements and recovery is often seen.
So it seems you are on the right path! Check out the site FAQ on antibiotic therapy https://www.roadback.org/faqs/
And feel free to ask any questions!
Autoimmune: ANA positive speckled. Probable MCTD with SD overlap. Hashimoto's. Possible Erlos Danlos. Mold Illness.
Infections: Bartonella, toxoplasmosis, mycoplasma, EBV
Meds: minocycline (Zydus generic) 100mg 1x daily,
Supps: digestive enzymes, Monolaurin, Betaine hydrochloric acid, iron, quercetin, biocidinYou sound like me…I am 37+ years into this! It started with knee pain and swelling, which hindered my ability to perform my job as a full-time professional ski patroller. I had a knee synovectomy early on, which stopped all symptoms in that knee through today! I continued to have issues, including heart arrhythmias and migrating joint pains. For 10 years I searched for answers and tried medications. Finally diagnosed with Lyme disease…and co-infections with a Lyme rheumatologist. (Has passed away since then) During this time, I continued to work at patrolling, but barely. This Dr. then recommended a Dr. nearer to me who took over my care.
I will tell you that I did IV antibiotics for months early on in treatment. I feel they might have saved my life. I was also in bed a lot by then and felt certain a wheel chair was next. I have since been on and off oral antibiotics for decades. Methotrexate made symptoms much worse, plaquenil caused severe muscle pain and Enbrel caused a headache 24/7. No more of those drugs for me! The ONLY thing that has had consistent, positive results are antibiotics. I now use the RBF dosing of low dose, pulsed antibiotics. My immune system is highly reactive to most everything, so a low dose works for me. I do believe Dr. Brown’s theory that we become reactive (allergic) to the bugs and toxins themselves. If you haven’t read “The Road Back” you might consider it.
As for not knowing if and what you might be infected by, specific testing might be warranted. The Igenex Lab is often recommended for people with Lyme and co-infections. I did have a tick bite, but many don’t remember one. For 10 years doctors ignored that fact when examining me! I think you should possibly find a Lyme educated doctor. He could help you determine the dosing and type of antibiotic. I’m sure, as sick as you are, it sounds insurmountable. This website has many very supportive people who have been through this and are willing to help I am grateful to this day for this site. I do believe it is the best thing you could do for yourself to try and recover your life.
I send my best wishes to you and my empathy. Hope is a huge part of what we all need…maybe this site will be your answer.
Mary
It may be helpful if you tell us where you are located. Someone may know of a good doctor in your area (or nearby).
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinMary,
What is the low dose of antibiotics which works for you?RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygousLinda L,
I am currently taking 250mgs biaxin. I am taking this on M, W, F. Am considering switching to Zithromax for the extended half-life of the med. I have sensitivities to so many things since having 10 yrs of undiagnosed Lyme. I did use minocin for years, but developed reactions to it. It was very helpful while I tolerated it. I think we all have different tolerances to food, meds, etc. We have to find our way through this keeping that in mind.Hope this answers your question.
MaryI did go to see a Lyme doctor. My Lyme western blot test from Quest came back negative, but I have three reactive out of the ten strains. Igenex test is on the way. It’s hard to have a conclusive diagnosis. But I want to start the antibiotic treatment. Doctor started me on Doxy now. Will see. who knows.
So many of my Lyme bands did not show up until I had been on doxycycline three months. Also, Quest and Labcorp do not test for 31 and 34 bands which are very important. I found out through Igenex that I had these and more. At that point my immune system decided it may be worth getting up and fighting. I also remind everyone that I had to go to compounded minocyclene. I just knew I had developed an allergy to minocyclene but my doctor had me try compounded and it worked like a charm. I became allergic to the fillers. Just a thought to remember.
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFHi Mary
I am currently taking 250mgs biaxin. I am taking this on M, W, F. Am considering switching to Zithromax for the extended half-life of the med.
Although that sounds good in theory, there is a potential problem with that. Compared to clarithromycin, it is easier for bacteria to become resistant to azithromycin. We don’t know if that’s true for all bacteria, but it’s definitely true for some. Because of that, I would not be comfortable being on 250 mg of azithromycin on MWF — if I had to take azithromycin I would want to be on a higher dose.
I did use minocin for years, but developed reactions to it. It was very helpful while I tolerated it.
Did you ever try doxycycline? It is much easier to tolerate compared to minocycline.
Phil
"Unthinking respect for authority is the greatest enemy of truth."
- Albert EinsteinDoes AP work for only mild or moderate cases? I am in such a bad shape and don’t have much hope after so many years.
Phil,
Thanks for the advice on azithromycin. I was not aware of bacteria becoming resistant to it more easily than clarithromycin. The other factor is my allergies to dyes in medications. Clarithromycin doesn’t have the dye I react to…yellow dye #6. Might be best to continue with it.I have tried doxy and tetracycline. I seem to present like a DILE reaction. Have challenged them quite a few times over the past 3 decades. Very frustrating, as I know they are effective.
Thanks for your response.
MaryDoes AP work for only mild or moderate cases? I am in such a bad shape and don’t have much hope after so many years.
I was told I had severe RA and I had it for almost 20 years before starting AP. AP worked for me. I can only speak for me and I’m not a medical professional, so “your mileage may vary.” As for me at the time, I figured I had nothing to lose.
Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.
You all are giving me encouragement. Thank you so much for response! I have started Doxy on 11/4, 25mg every day per my doctor (OD). I am petite about 100bls so the doctor let me start really low dose, and probiotics every day.
The problem is I don’t really know what I have. Every joint hurts badly, no swelling, all blood works are good. Don’t respond to RA medicine including three biologics. This AP treatment seems my last chance.
Hi Jzl;
I had a very bad case of scleroderma,every joint was painful,terrible pressure in my head,gerd,clawed hands and everything else that goes with it.In 2 years my body was normal and just under 4 I had full finger dexterity again.Remission for over 15 years now but if I stop my low dose of mino the disease is back in a week or so.Give it a try.
The fact that you don’t know what you have is not surprising,all my tests showed that I was healthy as a horse.Only a slight change in red and white blood cell count.Docs had to go by the way I looked and felt to be able to say “SD”
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