Forum Replies Created
-
Posts
-
Hi Maz!
This reminds me of a documentary I watched called An Inflammatory Approach, where an Indian doctor has reportedly been curing diseases with
Anti histamine antibodies. Here’s an article explaining his theory.He also has a website , http://www.drapparaofoundation.com/
Thanks for the kind words on the previous post! I owe much of my progress to you, Cheryl , Kay.
Vin
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, WHMF
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, WHMHi Lou,
I totally understand your frustration as many of us had to make the decision of treatment pre diagnosis. I unlike you do not have any specific antibodies but had a borderline low positive ANA 1:40 which went negative. However my symptoms came on pretty quickly and I was suffering and spent 10 months trying to pin down a diagnosis before I decided to give antibiotics a chance. It was the best decision I made. I went to several rheumatologists at New York University and then a scleroderma specialist at the Hospital for Special Surgery. I was told antibiotics do not work and offered planquenil but the scleroderma specialist said minocycline might work for reactive arthritis. I found another rheumatologist at the same hospital who was an AP doc and who knew Dr. Brown personally. He treated me until he retired last summer.
Your antibody is suggestive of CREST or limited scleroderma. You can take some comfort in knowing that most times it is a slower progressing version as some have it for 25 years before things get bad. I have a friend who has had that antibody since she was 12 and she’s 30 now and she only has Raynaud phenomenon as her symptom . She takes no medication but leads a healthy lifestyle and is a vegan.
If I were you I would learn as much as I can about AP so that you can make an informed decision. I would also see an integrative physician , like a functional medicine doctor that will test your gut and test for latent infections and imbalances. You may only need strong antimicrobial herbs and diet modifications to prevent full disease state or you may need to be on certain antibiotics for a few months. Many people on AP do see a reduction in antibodies during treatment.
I think you are way ahead of the game. Like Maz stated , scleroderma is treated as symptoms arise. This means that even if you were diagnosed they would wait for things to happen before they whip out the big guns (immunosuppressants). I think you have as much information as you are going to get from the doctors you have seen and should start consulting with doctors who view autoimmunnity differently. I now only use doctors within my insurance network for pulmonary function test ,mris, echocardiograms etc.. Keep a positive attitude and take full control of your health and you will be just fine.
vin
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, WHMFor me it worked best without food or a very light meal but I developed searing pain in my stomach 3 months in. Try taking it with no food for a few days and then with food to gauge how absorption is being effected. Then you’ll know how much to eat without diminishing its effects. I noticed within days how much better I felt when I didn’t take it with food. Some things you can do for your stomach is drink 4 ounces of aloe Vera juice right after you take your doses . If your stomach really gets messed up what has helped me in a huge way is mastic gum . I also drink marshmallow root tea daily.
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, WHMHi Amy ,
Yes I learned so much in this video hoping my doctor is receptive to the information. I also found the synergistic effect of bromelain and tetras to be interesting and wondering how I can work this into my protocol . I read one published study that found 80mg of bromelain increased tetras in blood. It would be great if I could lower the dose of mino to avoid stomach upset while not losing its effects. I wish this doctor took out of state patients !
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, WHMHi Lakegirl,
Sorry you are suffering but I am glad you found this treatment and someone willing to work with you . May I ask if you had a full work up by your rheumatologist ? I believe there are 10 scleroderma antibodies with the scl70, rna poly iii, and centromere being the most common . I believe ANA is usually negative in localized scleroderma .
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, WHMHi theroux,
I had very bad stabbing stomach pains that came on very suddenly after 4 months of Minocin. Ultimately had to take a month break which caused my rheumatic symptoms to reappear but I was able to work the dose back up slowly to 200 mg . During the break I did a few things and I’m not sure what worked in the end. I took activated charcoal in pill form for 2 weeks, drank aloe vera juice, took slippery elm pills, and digestive bitters. When i started taking minocin again I took it with food and several hours away from sleep. I did find that the medication didn’t work as well for me when I took it with food so I started taking it one hour away. Its a balancing act and I hope my stomach doesn’t mess up again. You should taper back the dose or you can even take 1 week off and see if that helps reset the system. My doc also told me to utilize Alka seltzer gold in the future. I also like to eat a bowl of warm oatmeal in the morning to help coat the stomach and drink coconut milk as well. Hope you are able to figure it out. Just know that even if you do have to take a break there is a good chance you can start back up on it.
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, WHMHi Michelle,
Nice to meet you . I have a slightly similar development. I have an undiagnosed connective tissue disease and have been on Minocycline for about 6 months. Before starting abx my c3 when it was tested a year ago was normal. A year later c3 is low c4 still normal. I retested for lupus antibodies and they were still negative and histone antibody which indicates dile is also negative. My wbc has been low as well but that was even before starting Minocycline. I have heard a few integrative doctors mention that a low c3 indicates infection. Hope things normalize for you.
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, WHMHi Steve ,
Can you remind me what infections were found in your mother in law ? I am in a similar situation in that I am about to make an appointment with a Lyme doc for a newly discovered Bartonella infection. I am wondering what the best course of action will be and how this will fit into my autoimmune treatment. I have the ability to add Azithromycin with my rheumatologist but he is retiring soon and I need a proper protocol and to be monitored . Has she seen improvement with the addition of Rifampin? I feel adding Azithromycin would be beneficial in my case because my symptoms started directly after a pneumonia which was successfully treated with this antibiotic . How much probiotic does she take ? I take 200 billion and will up it to 300 billion once I add the second abx. You may want to add saccharomyces boulardii to prevent C.diff.
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, WHMHi Steve,
How was it decided for Rifampin to be added to the protocol?
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, WHMHi Lucy,
As Maz stated he’s unfortunately not accepting new patients. I think Lynne is right and I myself will probably seek out a Lyme doc next . They are not as hesitant to treat with abx and if you are having symptoms I believe most will take you as a patient . Often times it takes more than one abx to put us in remission and I really would like to pulse Zithromax . The few Lyme docs I’ve tried calling would haven seen me as a suspected autoimmune case. Lyme patients are treated with multiple abx and iv for a number of years . Many do not have positive Lyme labs and it is my belief that Lyme docs are actually treating autoimmune patients who are infected with other organisms. I wish they were more transparent but it doesn’t hurt to call them up and explain your situation . Feel free to private message me.
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, WHMHi all,
I just wanted to write a quick update. I am back on 200mg of Minocycline after taking a few weeks off. Needless to say all disease symptoms came back during this time. I had the original Par Tablets crushed and placed into an acid resistant capsule by a compounding pharmacy. They seemed to not irritate my stomach as much but after being on them for a week the disease symptoms continued to get worse. I believe the pharmacist may have put some filler in the capsules and I just don’t think they are as strong as the original tablet form.
I began taking 50 mg of Par tablet every other day and that seemed to work better and I have finally worked my way back up to 100 2x a day. The difference this time is that I take one in the morning with food and a bottle of water, and I take my second dose at dinner again drinking a lot of water. Previously I had been taking them without food and although the medicine worked better I think overtime there was too much irritation in my stomach. I hope that the pain does not return . I continue to take milk thistle , slippery elm, probiotics and digestive betters.
On a separate note I am currently seeing a AP rheumatologist who personally knew and worked with Dr. Brown. Although he is retiring in August I hope to learn as much as I can from him. He reviewed my lab results and was interested in retesting for Myco P. to see if it went down since initiating AP. He gave me a script for Zyduss capsules and told me that some of his patients did better on them . He also told me that for those patients who experienced sided effects from Mino, he would lower the dose and add Doxy. He also stated that he and Dr. Brown would use Ampicillin with Mino but I unfortunately have an allergy to penicillin. I will follow up with him in a few weeks. If anybody has any questions they would like for me to ask him let me know.
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, WHMI have also thought about sublingual drops of Minocycline and I’m working with a compounding pharmacy that has offered this option for me. At the moment though my stomach has calmed down and I am doing well on the tablets. Phil brings up a valid point . I will let you know if I do choose to try this in the future.
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, WHMHi Steve,
TO add to my previous post, the term free light chains was something I remember reading in my test results. The test was an Immunofixation Random Urine Test which I’m now understanding is used in patients suspected of multiple myeloma. My results read no free light chains. There doesn’t seem to be much information on a connection between Scleroderma and multiple mylemoma that I can find but it is interesting that we have similar experiences.
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, WHMHi Steve ,
I don’t have much to add other than I looked back at my tests and did notice my rheumatologist ordering the Protein Electrophoresis lab when she suspected I had scleroderma. I think in general there is a higher risk of cancer in sCleroderma . My values were normal so I didn’t really ask her to explain the results or reasoning behind the test . Hope you get answers soon .
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
