January 19, 2015 at 4:22 pm #776ArizonaMomParticipant
My 19 year old daughter has been sick for 3+ years. Her current diagnoses are: hypermobility, POTS, fibromyalgia, chronic pain/neuralgia, endometriosis, asthma/allergies, migraines, pelvic floor dysfunction. Her medications are: Cymbalta, Zyrtec, Advair, Singular, midodrine, florinef, nabumetone (anti-inflammatory), Topamax, and vicodin (for pelvic pain).
She is continuing to decline and has had to defer a her college admission/scholarship. We recently went to see a chronic disease specialist that her pain management clinic referred us to – Stephen E. Fry. He is running a multitude of tests including blood work to look for infections – he also requested a Doppler study for CCSVI. Though we do not get the results until next week he believe she has a autoimmune vascular disease that was brought on by a genetic defect (he didn’t specify, but said it was a lack of some protein) combined with protozoans that are in her blood vessels. He has published a paper about these protozoans (called – Putative biofilm-forming organisms in the human
vasculature: expanded case reports and review of the literature) and believes that they are a low level infection that causes a variety of chronic conditions. He said even if she is positive for CCSVI and had an angioplasty it would only work for six months because the protozoans would reinvade her blood vessels. His treatment will most likely be long term antibiotics and antimalarial medication. Additionally, he is prescribing a whole food/plant based/low fat diet. Here is an interview – http://www.iadvocatehealth.org/protozoal_infection0.aspx#.aspx.
Has anyone heard of this or have any information?
—Arm Heaviness and Weakness—
In the last month or two her neurologic symptoms are amping up. She has periods where she will seem fine (or sometimes a bit lightheaded) and will feel like she is going to collapse because her arms and head feel very heavy and weak. She can barely move when this happens and will stay like this for quite a few minutes. Additionally, she has periods where she said she says she feels very floaty and calls them her space out periods.
Her quality of life is absolutely horrible. She is barely functional 85% of the time. I feel so helpless watching my daughter deteriorate.
Any information or suggestions to help?
Thanks.January 20, 2015 at 11:32 am #5244Dr. DianaKeymaster
I’m so sorry to hear about your daughter’s suffering. 🙁 I truly believe that we can peel back the layers of what is happening to us without needing to resort to suspicions of “new bugs” (did you see the chapter in my book about this? I hope it is hugely helpful to you and your daughter). Because my kids and I developed a similar presentation as your daughter, yet we could be confident that we were “triggered” by mainstream viruses (and I developed a huge reaction from a “regular old bacterial infection”), my research stayed in the confines of mainstream medicine. We presented as a chronic Lyme patient, for example, yet we knew our triggers were not Lyme. Instead, we looked at what traditional testing was missing, and why it was getting missed. High intracranial pressure, without papilledema (the “regular” presentation) was our first finding. 😉 I agree with Dr. Fry that there is no point in having a venous procedure because the problems will return (and we face the likelihood of fibrosis and the risk of thrombosis), but I do NOT believe the reason is because of a protozoa that no one else can identify. This came up previously on this thread: http://prettyill.com/forums/viewthread/458 I hope The Driscoll Theory book helps your daughter get started on the right track. Much more coming soon. Big, big hug, Dr. DJanuary 20, 2015 at 4:44 pm #5246ArizonaMomParticipant
Thank you for your reply Dr. Driscoll.
I tried the link for the previous thread regarding this issue and it is not working. Is is outdated and not viewable any longer?January 20, 2015 at 6:17 pm #5247Dr. DianaKeymaster
Oops! Can you try it now? 😉
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