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Aug 28, 2016 · Mysterious Stroke Diagnosis and assessment of approach in Stroke & Cerebrovascular Diseases

Good morning @carer, I had symptoms for about 2 weeks previous to the stroke.. Nausea, nearly fainted once or twice, dizzy and headache. Unfortunately, I was in a psychiatric hospital at the time. My symptoms were ignored or brushed off as (ironically) “in my head”- even when the stroke in earnest started. I too had good (low) blood pressure, low cholesterol, and was in good physical health. I was 40 at the time of the stroke. No family history. In my recovery, the doctors could not figure out why I had had such an event. As it turned out, it was an autoimmune disorder called antiphospholipid antibody syndrome- most likely from Lyme disease. I was at first put on Plavix then eventually on Coumadin. 81mg of aspirin was added somewhere along the way. I have learned since then and through many medical situations that a second opinion is indicated, especially when one doctor is deciding that something “major” is afoot. I was diagnosed with Lupus 2 years ago. The second doc said no Lupus giving me a more thorough work up a different, better blood test. I have also gotten second opinions outside of the small circle of docs in my community. The “fresh” eyes and no ties to the first doc is sometimes beneficial. The only other thing I might suggest to do is get paper copies of medical notes and test results. As the medical journey may end up being a long one- stay organized with them! I have not and I swim in documents. I didn’t learn the value of paper copies until just a few years ago. I was surprised to find how much info about me was incorrect in my medical records ( somewhere along the line I was diagnosed with Alzheimer’s. It has trailed me from doctor to doctor.) My doctors were basing some of what they do on this wrong info about me. Too, when I have to go to a new doc, especially one outside of my community- I have my records to bring. I am glad you have joined this community. Both my husband and I, at the time of my stroke, were blindsided. We had no idea what questions to ask. We did not have a support. I have here, only recounted my experiences, though I hope they are helpful in some way to you.

Jul 27, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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!

Jul 25, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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.

Jul 25, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

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.

Jul 24, 2016 · Autoimmune diagnosing problem in Autoimmune Diseases

I’ve struggled with many multi-system symptoms. I have been given a diagnosis for some (autoimmune: antiphospholipid antibody syndrome- causing a stroke, hypothyroidism, conversion disorder(eyes), depression, anxiety, OCD, arthritis (multiple joints), carpal tunnel syndrome…
Others remain a mystery.
All of the above, plus all my undiagnosed conditions (urinary incontinence, extreme fatigue, fainting, nausea, vomiting, pins and needles of both hands, sweats…) fall under the umbrella of chronic Lyme, or as the medical community calls it:
Post Treatment Lyme Disease Syndrome. (Still true if you were never treated) For me the Lyme disease (and bartonella, babesia ) diagnosis was the connecting thread. Lyme is called the “great imitator”.
As already said, each of my specialists looked at his or her body part. No one looked at the big picture.
The current blood tests for Lyme are generally unreliable, making it difficult to diagnose. Many doctors too, are unfamiliar with the condition. I am not trying to diagnose you as I am not qualified, but perhaps Lyme or another tick borne disease should not be overlooked. May I suggest the ILADS website (sorry I don’t know how to add a link here -cognitive -memory problems as well)
Good luck I hope you can find some answers.

Jun 7, 2016 · Antiphospholipid and Lyme disease in Autoimmune Diseases

Thanks for the tip. I actually just purchased the book at the recommendation of a friend. It’s good to hear another finding the book helpful. I’m just beginning this recovery, so everything helps!

Jun 6, 2016 · Antiphospholipid and Lyme disease in Autoimmune Diseases

Thank you for he link!!
I’m not sure what my symptoms would be today from APLS. The stroke certainly left me with some problems which continue today. Because I am on Coumadin (and aspirin is that med really necessary?) there are many repercussions from that. I need the usual bloodwork every 10 days to 4 weeks, I bleed and bruise easily, I can’t take many antibiotics, I restrict my diet some-so as not to have to deal with the vitamin K issue, surgeries which I have needed are complicated by Coumadin. All the usual Coumadin stuff. The major event from APLS was the stroke. And perhaps a second in 2011. I consider it a TIA if that. No testing was done to confirm one and after 48 hours all issues were resolved with no deficits. A new dtroke has not been seen on future MRIs.
My late stage Lyme/bartonella symptoms are the most challenging right now. Is there a discussion group on this website for Lyme?
Why is there little discussion about APLS and stroke? I think a number of people must have it with problems.

Jun 6, 2016 · Antiphospholipid and Lyme disease in Autoimmune Diseases

I was diagnosed in with APLS in 2001 after a stroke. I am now trying to manage symptoms from quite disabling late stage Lyme and Bartonella. ( I was treated for Lyme in 1994 and 1999). Is it reasonable to connect the autoimmune disease and tick born illnesses in that time frame?