Can I start AP while undiagnosed?

[Kat0605]

Hi- I am hoping someone can point me in the right direction. I am a 37 year old female and in September my husband got very sick with pneumonia. He was on antibiotics for 4 weeks before his cough finally went away. I thought for sure that I was coming down with it-I felt fatigued and lacked energy for 2 days and stayed home from work. Two days later, I felt better and went to work and suddenly became very light headed. I started noticing numbness and tingling throughout my body-particularly my hands and legs, but also my trunk. Thinking it was a just a very long migraine aura, I soldiered on but the fatigue came and went. Then in October, I noticed Raynauds in my hand while I worked under the air conditioning vent. This was brand new for me. My hand swelled and I started noticing swelling other places in my body. Finally, I had a 7-day bout with insomnia, where I didn’t sleep for more than 2 hours at a time and actually went 96 hours with no sleep at all. After this, I started feeling symptoms coming on in a rush. I developed Telangiagiectasia in my face and legs and arms and suddenly noticed that if I try to cry, my eyes have no tears. My mouth is super dry. I also have random joint pain from time to time- also very new.

I have seen 2 rheumatologists and because my ANA is still negative, and my symptoms are so new they are unwilling to diagnose me with anything at this time.

Here is my question- because of the timing of the symptoms and when this all started, it seems very likely to me that I contracted my husband’s pneumonia and it set off the course of autoimmunity. Does this make sense that it would have been triggered so immediately? I want to be proactive and start AP as soon as possible to try to limit the progression of whatever this may be. Will any AP Dr test and treat me at this point without skin thickening or positive ANA?

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, azi

[Maz]

Hi Kat,

Sorry you had to find us!

What you’re describing is not uncommon around here. Unfortunately, folks can have symptoms of autoimmunity long before any lab markers show up and vice-versa. If you can manage to read a copy of “The New Arthritis Breakthrough,” Dr. Brown describes the case of a young lady who he treated and suspected was in the early stages of autoimmunity. His MO was to treat before the disease really set in and could take hold. In other words, he preferred to nip it in the bud. Conventional wisdom, on the other hand, waits until symptoms and labs are clearly indicating a specific type of SD diagnosis. The issue here could be because there is no cure for SD and the drugs that are prescribed are for palliative purposes, to help control symptoms and to slow down progression. The downside is that they can come with troubling, uncomfortable side-effects.

It’s really a matter of individual choice (in consultation with an experienced AP doc) – to either wait until a confirmed diagnosis to treat or to try to “cut the disease off at the pass,” so to speak. The usual oral dose for SD is a daily protocol of minocycline 100mg twice daily. starting the first month with just 100mg a day to offset any dizziness or nausea that may occur. Kids with acne get prescribed this antibiotic without so much as a blink of an eye by dermatologists. If it makes more sense to you to wait for an official diagnosis, then your decision would be to wait. If it makes sense to try to offset symptoms early, then it would make sense to try a relatively benign treatment before anything further unravels.

My best fellow patient suggestion to you would be to get as informed as possible about the treatment and, if you decide to try AP early and you don’t have a local doctor open to prescribing and monitoring you on the protocol, to seek out an AP doc who will. You could also email an experienced AP doc in Iowa who is kind to offer insight to patients starting out and who may be struggling to ask, if he could recommend a good any infection testing and a protocol for you and, if you have an open doc to help, if he would also consult with that doc on your behalf. Really depends on where you’re living and if there are any AP docs in your locale.

It can help to get infection testing run prior to starting AP, if a person wants to begin treatment with IV clindamycin, because some folks are able to get their IVs covered by insurance if they can prove infection. Mycoplasma is but one type of bug that have been linked to autoimmunity, but there are others, like Lyme disease, toxoplasmosis, h. pylori…and others…a veritable soup. The reason for this is because some infections waylay immunity and enable other infections to re-emerge. However, it’s not vital to get tested right out of the gate, if a person just wants to start on oral minocycline.

You asked if it makes sense if your husband’s pneumonia might have triggered your symptoms so quickly. The answer is yes, it’s possible, because to someone who may have a particular genetic haplotype, with pre-existent compromised immunity (e.g. a history of toxic environmental exposures, like mold, heavy metals, pesticides, etc., poor diet and leaky gut, hormone imbalances, a stressor of some kind, plus latent infections that may have been reactivated by a triggering infection, a passing acute infection can be the last apple to tip the apple cart….or it may have been brewing and happened down the track, anyway. In retrospect, folks describe their disease onset as a “perfect storm” when they start putting the pieces of their autoimmune puzzle together and, commonly, find they have “a number of nails in the soles of their feet to pull out,” one at a time.

Although no one here is a medical professional and we can’t say if you have a particular autoimmune disease or not, do hope that the sharing of others will help in some way. Hopefully other SDers will respond to your questions about the pros or cons of early treatment, too, to provide you with more input. It sounds like you’re a pretty proactive person and that you are already ahead of the game and wanting to get on top of this. We see it, over and over again, here that the folks who get right into self-advocacy, getting versed in the rationale for the protocol to make an informed decision, choosing a doc, getting started on treatment in good time, changing lifestyle habits, etc., tend to do pretty well.

Wishing you the very best for your decision-making process, Kat! If you find you would like an AP doc or Lyme Literate MD list, then you’ll find the emails to make your request at the top right of this page under, “Contact.”

[Kat0605]

Maz, thank you! This is so incredibly helpful. I requested a Dr’s list last week and though I live in a big city-Chicago- there doesn’t seem to be many options near me. I have a primary care Dr that seems to be more open to alternative therapies, so I am hopeful that she may indulge me. I am considering consulting with Dr S. If someone reads this and can PM me a Dr that they think would take me seriously at this point, I would greatly appreciate it.

In my introduction, I neglected to mention that I am 10 weeks pregnant. Of course, this means starting AP has to wait no matter what. I have had 2 miscarriages in the last year and have heard that postpartum is a bad time for SD flares. I have also heard that pregnancy makes autoimmune diseases better. Though I have no skin tightening yet, my dry eyes and mouth and insomnia all started right around week 5 of my pregnancy and seem to be getting worse. I notice my joint and skin pain seems to be worse when I don’t get a lot of sleep. Because of my health issues, I am very concerned about this pregnancy.

My goal at this point is to have a relationship with a Dr and potentially be tested for mycoplasma so that if I lose the pregnancy or after I give birth, I can begin treatment right away. I am very afraid of being sick with a new baby. Trying to take it all one day at a time, but this is very very scary. My way of dealing is to be as knowledgeable and prepared as possible. I started discussing these options with my husband last night (who is still skeptical that I even have an AI condition) and he agreed due to the timing of when I started feeling sick that it would make sense that a bacterial infection triggered whatever this may be.

Oh I should also note that I am starting with a naturopath this weekend who hopefully will point me in the right direction as to dietary steps to take to reduce symptoms. Many years ago, my primary care Dr did a food intolerance test on me and I was very intolerant of gluten and many many other foods. Of course, since it was so difficult to eliminate basically every food I had ever eaten, I did not stick with the diet. I had very few problems until recently.

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, azi

[Maz]

Kat, I want to encourage you by letting you know that we had a SD Mom here a few years ago who posted under the User ID PetRescue and she safely delivered twins! Here is her post about this:

https://www.roadback.org/forums/topic/introducing-my-miracle-twins/

She hasn’t posted in a while, but you might try PMing her, so she can share how she navigated her pregnancy safely. I’m trying to remember, but I think she continued with antibiotics during her pregnancy…not tetracyclines, which can harm the fetus, but other classes of antibiotics that are safe during pregnancy. I would also encourage you to try to connect with Dr. S. for his advice on starting AP while pregnant. You may even consider going to him in Iowa for an intitial consult? I will PM (private message) you his contact info. I hope he gets back to you quickly, but we heard he was in hospital recently having a surgery. You can also try calling, as his wife sometimes picks up their home office phone and she might be open to asking for his insights for you, if he’s unavailable.

There are definitely alternative antibiotic protocol options while pregnant and Dr. S. may think that starting some type of protocol may help you to retain the pregnancy, though I don’t want to presume.

To check your PM inbox, just hover your cursor over where it says “Hello Kat0605” and select “Messages” to find your PM.

[Kat0605]

Thank you. I sent PetRescue a message. I was able to get ahold of Dr S. via email and will hopefully be able to connect with him via phone tomorrow or Thursday. Can he prescribe antibiotics or does he need to just consult with another Dr to prescribe? I am not sure if my primary care Dr would be open to it, but I guess it is worth a try.

RBFV edit to remove AP doc’s full name as per forum guidelines to protect doctor privacy. Thank you for your understanding.

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, azi

[Maz]

Hi Kat,

Wish it was that easy, but it would be illegal to prescribe any medication over the phone and a doctor would need to see a patient in person to evaluate their situation. Many people travel to see experienced docs when they cannot find local support, but if you can find one to help, Dr. S. has been very kind to freely consult with local docs on how to administer AP. Hope your call with him tomorrow is productive and reassuring! Let us know how it goes!

[Calida]

Hi Kat,

This autoimmune nonsense often starts off as a mixed bag with symptoms of a few different diseases. At some point, labs will probably clarify and name the main culprit and that helps but minocycline usually plays a part in remission in all rheumatic diseases so a specific diagnosis isn’t absolutely necessary.

As Maz explained, the labs can take a while to identify the disease and they did in my case. I have scleroderma as the main villain with a lupus overlap. A sclero specialist diagnosed me with Sjogrens (dry eyes, mouth) but I never developed Sjogrens antibodies so it seems the dryness was related to systemic inflammation caused by sclero and lupus and it wasn’t Sjogrens disease at all.

Maz’s info is always sound and has never failed me but I thought of another option that may help you through the pregnancy if antibiotics aren’t feasible. I have family in Scotland and England and my cousin was having difficulty carrying to term so I found some interesting LDN (low dose naltrexone) information which describes the history of its use in these situations. There’s an internationally well known physician in Dublin, Ireland who has helped women in the UK suffering from recurrent miscarriages due to immune dysfunction. Usually these women have an undiagnosed underlying autoimmune disease that bypasses the normal, protective pregnancy devices and causes miscarriage by treating the fetus as an invading enemy. LDN modulates the immune system, preventing the miscarriage, without suppression (which can cause the disease trigger, usually an infectious pathogen, to multiply with abandon as the pregnancy continues) and with an excellent safety record for both mother and baby. My cousin’s English high-risk OB physician actually put her on Humira to suppress the immune response but it just caused severe rheumatic joint problems that hadn’t existed before so that was stopped. Immune suppression during pregnancy, either natural or through the use of meds, causes the onset or exacerbation of autoimmune disease shortly after pregnancy because the infectious pathogen takes advantage of immune suppression to reproduce and migrate throughout the body. Once the immune system awakens post partum, a fierce attack of the buggers causes all sorts of disease symptoms and damage.

LDN, prescribed by a Roadback physician, bought me precious time early in my sclero days by slowing down the disease process and reducing inflammation without suppression. This allowed me to explore AP thoroughly and find the right doctor to help. Just thinking it may be an option for you, a happy and safe medium to get you and the baby through the pregnancy without allowing the disease to progress.

Here’s a great interview with the doctor in Dublin that explains how LDN helps mother and baby and the history of its use to help those who experience difficulty getting pregnant or maintaining a healthy pregnancy to term. He has educated and counseled OB docs here in the States so you wouldn’t have to travel to the UK to see him directly.

https://www.ldnscience.org/resources/interviews/interview-phil-boyle

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

[Kat0605]

Calida- thank you so much for the suggestion. I believe that I have come across your posts on Inspire about this issue, which sent me here to Roadback Foundation. I have contacted a Dr on both the Roadback list and the LDN in my city and have an appointment with him in a couple weeks. I am not going to lie, I am very concerned about taking another drug during pregnancy. On of my concerns is reporting the drug to my OB/Gyn who thinks that all of my current symptoms are related to anxiety or pregnancy, as does my rheumatologist. I am currently taking 2 other Class C drugs for anxiety and insomnia and I hate to add a 3rd, but I also don’t want to keep getting worse. My joint pain is really picking up and I am starting to feel like I am getting shin splints even though I have done nothing more strenuous than walking the last few weeks.

Can I ask you both another question- I read so much about Lyme disease-causing autoimmune reaction, but what about bacterial pneumonia? I guess it is possible that I contracted Lyme at some point since I do spend time outdoors in the summer, but because my symptoms started 1 week after my husband having a horrible bout of pneumonia, the timing just seems so suspect. Has pneumonia been found to be a trigger in any other patients that you know of?

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, azi

[Maz]

Has pneumonia been found to be a trigger in any other patients that you know of?

Kat, think you’ll find good info on wwww.immed.org. Professor Garth Nicholson was the researcher who unraveled Gulf War Syndrome and he, like Dr. Brown, believes mycoplasma and other infections can trigger autoimmunity:

http://www.immed.org/illness/autoimmune_illness_research.html

We haven’t yet added any research to the RBF website as it’s still in second stage planning, but eventually there will be research loaded to wade through. It’s not uncommon for one acute infection to be a triggering infection, enabling other latent microbes to reactivate. This includes bacteria, viruses and fungi and has been borne out in recent research on synergistic biofilm colonies in lupus, Parkinson’s and Crohn’s.

Hope this helps a little. Think you’ll find Prof. Nicolson’s website interesting. Also, if you haven’t yet read the Henry Scammell books, suggest you read both, which you’ll find if you scroll down this page:

https://www.roadback.org/resources/recommended-reading-viewing/

Did you have any luck consulting with Dr. S?

[Calida]

Kat0605 wrote:

Calida- thank you so much for the suggestion. I believe that I have come across your posts on Inspire about this issue, which sent me here to Roadback Foundation. I have contacted a Dr on both the Roadback list and the LDN in my city and have an appointment with him in a couple weeks. I am not going to lie, I am very concerned about taking another drug during pregnancy. On of my concerns is reporting the drug to my OB/Gyn who thinks that all of my current symptoms are related to anxiety or pregnancy, as does my rheumatologist. I am currently taking 2 other Class C drugs for anxiety and insomnia and I hate to add a 3rd, but I also don’t want to keep getting worse. My joint pain is really picking up and I am starting to feel like I am getting shin splints even though I have done nothing more strenuous than walking the last few weeks.

Can I ask you both another question- I read so much about Lyme disease-causing autoimmune reaction, but what about bacterial pneumonia?….

Hi Kat,

You mentioned some interesting symptoms/history – migraines, anxiety, insomnia – in addition to the common signs of joint pain, fatigue, Raynauds, telangiectasia, numbness and tingling. If you do have an autoimmune disease, AP is the gold standard of treatment as it is the only treatment that addresses the infectious trigger and holds the promise of a long, relatively healthy life.

The reason I mention the migraines, anxiety and insomnia is that the increase in natural endorphins due to LDN often relieves anxiety and depression. Some people find it also helps them get a good night’s sleep after the initial week or two of minor sleep disturbances. I’ve been surprised by the number of people, especially women, with autoimmune disease who have a history of migraines and the anecdotal information leads me to believe there is a connection between these chronic headaches and AI disease. I’m happy to report I haven’t had a single migraine since starting LDN in 2013.

It’s strange that many doctors blame the physical manifestations of AI disease on anxiety or pregnancy. I believe that the anxiety is actually a result of the inflammation, triggered by the adrenal gland’s role in a systemic, inflammatory disease with the increased production of cortisol. Anyone prescribed high doses of prednisone can relate to your feelings of anxiety as both cortisol and prednisone have an anti-inflammatory effect and yet trigger feelings of anxiety.

I see LDN as a potentially effective bridge between diagnosis and AP for those who, for whatever reason, can’t start AP as soon as AI symptoms appear. Its history of use for preventing miscarriage as well as reducing inflammation and the associated AI symptoms may make it a viable option for you if your doctors advise against antibiotic use during pregnancy. My thought is that it may decrease the need for the anxiety and insomnia meds, allowing you to enjoy a safe, stress and relatively pain free pregnancy.

It’s unfortunate that these symptoms appeared at a time when you need to feel strong and healthy but, in an odd way, it may be a blessing in that addressing an apparent autoimmune disease may actually uncover the reason for the previous miscarriages.

With regard to the pneumonia, I too believe in a tipping point, the last straw in a series of exposures to different bacteria and viruses combined with a genetic predisposition to autoimmune disease. Perhaps your immune system was barely keeping a mycoplasma or borrelia population controlled in your body and the exposure to your husband’s strain of pneumonia was that tipping point. In any event, I hope you’re able to get tested for myco and other suspects and that it uncovers the dominant culprit.

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

[Calida]

Maz wrote:

Kat, think you’ll find good info on wwww.immed.org. Professor Garth Nicholson was the researcher who unraveled Gulf War Syndrome and he, like Dr. Brown, believes mycoplasma and other infections can trigger autoimmunity:

http://www.immed.org/illness/autoimmune_illness_research.html

Maz, this is a great article, thanks for sharing! Prof. Nicholson’s description of certain microorganisms, such as mycoplasma, exiting the invaded cells and carrying part of the host cell membrane on their surface was very intriguing as it provides an alternative theory to cell mimicry….

“This may trigger the immune system to respond to the host antigens on the foreign microorganism.”

And this was very exciting…
“Our recent results indicate that in addition to Rheumatoid Arthritis other autoimmune diseases can be treated with antibiotics to suppress chronic bacterial infections, and antivirals to suppress chronic viral infections. Patients with such infections gain significant clinical benefits by undergoing therapies against chronic bacterial and viral infections.”

Maz, do you think the addition of anti-virals may someday play a role in an Antibiotic Protocol, especially for those with lingering symptoms not resolved by the traditional AP?

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

[Kat0605]

Hi- I’m coming back around to this now as I’ve seen a scleroderma specialist who is adamant I do t have scleroderma (please tell my thickening skin this). In my research I’ve found that azithromycin is okay during pregnancy. If I found a Dr to prescribe it- what should be the protocol? 250 mg bid?

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, azi

[Maz]

Kat, were you able to connect with Dr. S. regarding your situation? If so, what was his advice? Also, did the SD specialist run any infection testing?

[sunny22]

Kat,
Just my 2 cents regarding the miscarriages. Many of us who have tested, have MTHFR. This has played a big role in miscarriage if undetected. I had a couple friends who were going thru this and were so disappointed that their countries could not prescribe the correct methylated prenatals with folate and a blood thinner (baby aspirin a day or Lovenox, these are what my obgyn prescribes). Once a woman is pregnant, the first thing he does is test for MTHFR. His miscarriage rate dropped dramatically. Smart guy, all obgyns should follow that practice. always check with your doc. I was one of those women. Sunny

[sunny22]

Also Kat, I had the symptoms and a dx. the dr I was seeing wanted ti wait longer ti start the protocol, for what reason, I can only surmise. As much as I bugged him to get me on something quick, he did not. Unfortunately my hands curled and that was the last straw with him. I am glad you pushed for the right doc, asap. I think it is critical to get someone who believes in the treatment. Best wishes!

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