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Brie (@brie87144)

Autoimmune diagnosing problem

Autoimmune Diseases | Last Active: Dec 4, 2018 | Replies (211)

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Oops, just lost my reply. Let me try again…in answer to your questions: I was first diagnosed with Lyme in 1994, then again in 1999 ( with an EM rash this time). I was never adequately treated. My symptoms continued. I was also diagnosed in 1999 with cat scratch fever. (So bartonella) the ID did not treat me for it. In 2001 I had a stroke which led to the diagnoses of APS. Then, it was a progression of multi-system symptoms until now. As I am on Coumadin for the clotting problem, I cannot use antibiotics (though I wouldn’t anyway) I am seeing a naturopath and going to a Lyme clinic here in CT. I am also trying ton following an anti imflammatory diet- no dairy, sugar or carbs. As many herbals are blood thinners, I am having to go very slowly. Just this week, I have started bruising a lot and bleeding some. I need to back off on my treatment. In a month of this treatment however, I had little or no pain in my hands and wrists. This is the first time in many, many years. Though it was only lasted 9 days- it IS possible! I am hopeful despite this road block. A friend has improved significantly from her advanced Lyme using alternative medicine. She was first on antibiotics for 2 years with no improvement. I hope this answers your questions. I do know it is impossible to actually prove that all my medical issues are from advanced Lyme (bartonella/ babsia). I had a positive western blot 2 years ago, though my PCP thought it was a false positive. It does explain all of my,conditions though- the diagnosed and undiagnosed. All have been shown to be a result of Lyme. Now a question for you… I am trying to deal with my chronic pain (primarily arthritis) using electrical stimulation, yoga, accupuncture ( really helps), mindfulness/meditation and exercise as tolerated. For my knee -it aggravates the torn meniscus. I am new to these techniques and also going broke. I’m just starting this journey to health. Any other ideas for the chronic pain? Thanks for your interest.

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Replies to "Oops, just lost my reply. Let me try again...in answer to your questions: I was first..."

You say that you “can’t use antibiotics” and “wouldn’t anyway”. May I ask why you can’t? Not questioning you but that seems to put you in a bad spot as far as treating the Lyme. The antibiotic recommendations for treatment seem to be pretty modest with the potential payoffs huge.
The issue with herbal treatments is that the contents of the medicines given are not FDA regulated so you really don’t know what you’re getting. Another issue is that it is harder to predict and evaluate relationships and possible conflicts between the supplements that you are taking. Are you seeing a mainstream medical practitioner as well as the naturopath for blood work?

Antiphospholipid syndrome often occurs along with some autoimmune disorders like Lupus or Sjogren’s. Have you have a good workup for either of those?

Just trying to cover the bases.

Hello again, As I am taking Coumadin, the recommended antibiotic protocol includes those which interact warfarin causing increase blood thinning. ( As many antibiotics and NSAIDS do) I realize that the herbals do too, and less is known about interactions and quality there. It has been shown in clinical trials ,however, that PTLDS does not respond to treatment with antibiotics.
I do see a conventional doctor every 10 days to 4 weeks for blood work. Depending on
my INR and dose change, if any.
I was diagnosed with Lupus in 2014. When I went for a second opinion, this doc used a newer blood test (Exagen I believe -then again maybe not?) ) and it came back negative for RA, Lupus and Sjogrens. At the time my mouth was so dry I could no longer swallow food. A lip biopsy also came back negative for Sjogrens. As antibiotics are difficult to use with Coumadin (yes, herbals too) and they haven’t been shown to be effective, I have chosen the alternate route. I have seen success first hand with the alternative medicine approach. Though each person is different. For me it is a matter of educating myself, weighing the risks against benefits and then deciding my course of action. With so much controversy about its existence and with such murkiness surrounding advanced Lyme, it has been difficult to sort out the facts, the science. Thank you for asking those questions. It helps me focus and evaluate what I am choosing to do.

Whatever works for you.
Would you share what alternative treatments you’ve seen produce successful results for PTLDS? Always room for new ideas.

Though not strictly alternative, I have been following an anti-imflammatory diet for the good part of a year. I have eliminated dairy and have decreased carbs and sugar significantly. There is a book which I have found helpful. “Healthy Joints for Life” by Richard Diana M.D. In it he explains imflammation not only on a mechanical level but also on a cellular level. Addressing diet, supplementation and exercise.
I am also taking vitamins and supplements to support my immune system and combat imflamation. Vitamin C, D3, Omega 3, magnesium, B6, B12. There are others which are helpful though this is a combo which does not interfere with my clotting. I am also taking probiotics, and liposomal glutathione.
From the naturopath I am using MC-BB-2 to address Lyme and MC-BAR-1 to address Bartonella. Lymenosode drops and Transfer Factor LymPlus. . I have only been using these last preparations for a few months.
And, of course, a number of “traditional” medications.
For pain: mindfulness /mediation/yoga (just starting to learn these), TENS heat-cold, accupuncture (very effective), massage, distraction and exercise.
As I have had at times a decrease in joint pain using these things, I feel I must be doing something right. I keep a careful record of symptoms including things like time of day, sleep, activities, food intake, exercise, treatments, medications, my blood work results, etc. I can find nothing to indicate that my improvements are from anything else, but the alternative approach. the traditional,one i have been doing for years with no help. As well, my mood has improved, I’ve lost weight, on many nights I am sleeping much better and my energy level has improved. Yes, I still have debilitating symptoms. Though these small improvements are very encouraging. I work closely with my PCP. I have a long way to go-slowly.
I feel, It is crucial to work with a knowledgable professional (I get recommendations from friends when I can) and not take it upon myself to decide on treatments for Lyme.m I know my body better than anyone though, so if I feel it’s necessary, I will challenge and question, and I always try to communicate with them- even when they don’t listen (a sign to switch doctors) I don’t want to create further problems so, so I professionals as guides. As many have said, I have found some specialist “incompetent”, frustrating, and knowing nothing about advanced Lyme or even chronic imflamation. I get second options if I feel on any level I am not getting adequate care or a what I feel, is a questionanle/serious diagnosis. Some of these specialists don’t even know about the medications they prescribe in their own specialties. I have learned the hard way to investigate and educate myself. This is for both traditional AND the alternative approaches. Of course, exhausting, but for me , it is the quality of my life and health we’re talking about. These investigations allow me to know what questions to ask, many for me. I suggest too, ALWAYS get paper copies of your medical records. It is handy to take to new doctors., I found out through hard copies, that I had been diagnosed with Alzheimer’s disease. That was a shocker. With the number of conventional docs I see, and now alternative ones this is a full time job. Support groups and individual counseling have given me the courage to challenge and question my doctors, info about community resources and other’s experiences, along with a new perspective. As I am essentially homebound I need all this support.
Well, this was long, and I hope coherent!

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