Guest guest Posted March 24, 2005 Report Share Posted March 24, 2005 The significant points from your post are: 1) problems since birth 2) yeast infection at 4..........what explanation for that? was it systemic?? 3) appendectomy at 10........... was that organ infected???? there should be a pathology report. 4) at puberty she started to experience a myriad of symptoms. IMO, this history seems could implicate impaired immunity. Or an occult infection at birth that wasn't caught (How's her CBC/Blood chemistry?) Hows her spleen? Even in this day and age - what happens in the spleen is still mostly a mystery. That's the organ that repairs and sorts RCBs and researchers aren't even sure how that's accomplished... as and far as I know- unless a spleen is enlarged, there are no tests for function. I had impaired immunity because of asplenia - and didn't find that out for 50 years... untill I had a torso ring CTSCAN looking for something else. (It's a congential birth defect, actually affecting several organs, but my heart seems to be OK). So.. a picture being worth a thousand words.. I'd probably spend the 2K for a look inside to make sure everything's there and where it should be. Barb re's the story, and I'm hoping for your insights. My daughter has had debilitating symptoms since she was 13. Prior to that, she'd had gastro symptoms since birth, cognitive/emotional stuff best described in retrospect as brain fog, yeast infections dx'd first at age 4. At age 10, she had an emergency appendectomy (nothing burst) that went south with post-operative internal bleeding that resulted in her having 4 pts of blood transfused from unknown sources. At 12 (Dec), she began reporting dizziness. At 13, she had a hard fall on a gym floor that cracked her coxxyx and increased the dizziness intolerably (Dec the next year). She began having migraines, and was out of school for 6 weeks with one that couldn't be controlled until she was hospitalized in May for ergotamine, morphine, and who knows what else. Migraines were intermittent that summer, dx'd with orthostatic intolerance in Sept. In Oct, she developed intractable neck and back pain, and our PCP first said " fibromyalgia " to us in Nov. Subsequent symptoms have included excessive fatigue, poor sleep, IBS, VV - the gamut. We're in central PA, so there have been plenty of opportunities for Bb exposures. Naturally, nothing has come back positive on the normal tests run or mildly positive test results (e.g. TSH) haven't led to anything. Mild improvements associated with guaifenesin. So, we had a first visit to a Fibromyalgia and Fatigue Center in Pittsburgh today. These are the blood tests the dr. there ordered: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2005 Report Share Posted March 25, 2005 Exiled- Both my daughter and myself are being treated at the Cleveland Fibromyalgia and Fatigue Center, so have been through their slew of tests. When you get back the results you'll see that a number of them are actually done at outside specialty labs, not at the main Quest lab. But, as they are sent and billed via Quest, my insurance has paid for them because Quest is an accepted contractor! They might not have paid for many of these tests if the doc had sent them directly to these specialty labs. This is especially true when the tests are more experimental in nature, eg the L-Rnase. So don't assume the Western Blot is the standard Quest one. Digging through my own tests these are some of the " outside " labs used by Quest: NK Cell activity, Rnase-L activity-- Immunosciences lab Thyroid assay-- Associated Reggional University Pathologists, Utah IGF Binding Protein-3; Herpes virus 6--- Nichols Institute Interferon Alpha, EIA; sackie virus; Echo virus; Polio virus--- Focus Technologies Inc. I can't tell from the report who the Lymes tests are done by, since a lot of this is printed out from a Quest report. The Fibro and Fatigue Center Inc. appears to have contracted with Quest to do tests through labs that they (F & FC) approve of, so there seems to be some selectivity being done here, picking and choosing more obscure tests not done or not done adquately by Quest central. My daughter is younger than yours, 14, but a very similar picture. Being home tutored, mostly brain fogged and zombified by fatigue. Her tests came up with low cortisol, thyroid, two Lyme's specific bands on the WB, low lymphocytes and globulins, and some other stuff. She only did the initial vitamin/glutithione IV which didn't seem to help her. Her treatment overall has so far not helped and we are consulting the " Big Cheese " medical director (Ken Holtorf) to review the case and see what they are missing. It's one advantage of their system that they have consultation available. It's helping me personally, having picked up the Cpn infection. I would note that, while their approach is thorough and covers a lot of ground, and they have a systematic model to work from, you still have to keep up on your own knowledge base so you know the questions to ask. They also have a lot of info to track about a lot of patients, and some things can get buried in the chart if you don't keep up after them. Most of the doc's are new to this complex approach and know some areas of treatment better than others. For example, it was my own research that found the Wheldon regime to treat my Cpn. Their standard approach to Cpn was to continue on tetracycline alone, which was helpful but, as all of Stratton's research shows, is inadequate to get at the cryptic phases of this vicious bug. The good news is that they (or at least my doc at the Cleveland Center, Felicitas Juguilon MD) are very patient-oriented and willing to keep trying and retesting, or expanding the range of tests and treatments in order to get you well, and don't have an attitude of labeling you if their first cut at it doesn't work as well as they hope. This is no small thing for those of us who have seen doc's who avert their eyes and their efforts if we don't fit in their current box. Keep at it, Jim Message: 3 Date: Thu, 24 Mar 2005 04:01:17 -0000 From: " exiled2 " <exiled2@...> Subject: feedback, please Here's the story, and I'm hoping for your insights. My daughter has had debilitating symptoms since she was 13. Prior to that, she'd had gastro symptoms since birth, cognitive/emotional stuff best described in retrospect as brain fog, yeast infections dx'd first at age 4. At age 10, she had an emergency appendectomy (nothing burst) that went south with post-operative internal bleeding that resulted in her having 4 pts of blood transfused from unknown sources. At 12 (Dec), she began reporting dizziness. At 13, she had a hard fall on a gym floor that cracked her coxxyx and increased the dizziness intolerably (Dec the next year). She began having migraines, and was out of school for 6 weeks with one that couldn't be controlled until she was hospitalized in May for ergotamine, morphine, and who knows what else. Migraines were intermittent that summer, dx'd with orthostatic intolerance in Sept. In Oct, she developed intractable neck and back pain, and our PCP first said " fibromyalgia " to us in Nov. Subsequent symptoms have included excessive fatigue, poor sleep, IBS, VV - the gamut. We're in central PA, so there have been plenty of opportunities for Bb exposures. Naturally, nothing has come back positive on the normal tests run or mildly positive test results (e.g. TSH) haven't led to anything. Mild improvements associated with guaifenesin. So, we had a first visit to a Fibromyalgia and Fatigue Center in Pittsburgh today. These are the blood tests the dr. there ordered: ACE ACTH Aldosterone Angiontensin II AST/SGOT B12 Cardio CRP CBC w/diff CMP Cortisol Free Cortisol Total DHEA-S Fibrinogen Heave Metals Panel Meoglobin IGF-1 Insulin Lipid Panel Lipoprotein Magnesium, RBC NK Cell activity Pregnenolone PTT Reverse T3 SHGB T3, free T4, free Testosterone F & T Thrombotic Marker Panel Thyroglobulin Thyroid Peroxidase AB Total IGG/IGM/IGA TSH receptor AB TSh Vitamin D Panel Estradiol FSH LH Progesterone Prolactin Somatostatin Anti T3 AB Anti T4 AB Anti-TSH AB RNASE-L Act IGFBP-d Babesia Candida IgG/IgM/IgA Chlamydia Pneum CMV CMV IgM EBV early antigen EBV panel HHV6 Lym Disease IgG/IgM Lyme Disease WB Mycoplasma IgG Mycoplasma IgM He prescribed Xyrem and Nystatin for now, based on symptoms. Gave her an IV colloidal silver infusion, an IV cocktail comprised of unknown goodies, and an injection primarily of B12, glutathione, and other stuff. She's in surprisingly good shape tonight, considering the long drive to get to Pitt from home and what she went through today. He's familiar with the MP. He's looking for Igenex Western Blot results before going to samento. Based on her symptoms, he's especially looking for her thyroid info. So, does this seem to y'all as complete as it does to me? Thanks, Val in PA Quote Link to comment Share on other sites More sharing options...
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