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ourfullhouseParticipant
This video is great, as well as part 1 & 2 of your talk at the conference!
Going to segway here and ask about kidney stones, since you mentioned you had one during the conference (yikes, hugs to YOU, I’ve had them before… so painful!). I have been wondering if anyone in “our” group of Diamox takers was having any problems with kidney stones, since it is a known possible side effect? And, I read that if you are taking bicarb with it you are going to be even more likely to get kidney stones. I take the 650 mg bicarb tablets I bought online (so much easier than filling gelcaps myself), two tablets , three times a day because my blood chemistry is not liking the Diamox ( I get very acidic). To me that seems like a lot of bicarb, but I have no idea how much the rest of you are taking. Oh, and I take 4 of the 125 mg Diamox a day. I have had kidney stones in the past, so I am getting a bit nervous about more forming. Lately I have had some twinges in my left kidney….
I hope you are feeling better now Dr. Diana!
ourfullhouseParticipantI don’t know what my cholesterol was till the last 10 years or so and its always been on the high side.
Speaking of triggers, I think my trigger was when i hemorrhaged during delivery 10 years ago. It was a home birth and the placenta partially detached and then my uterus stopped contracting so I just bled out. Placenta wouldn’t budge. Called 911, EMTs arrived, I had no detectable blood pressure, but was still conscience…just barely. Anyway at the hospital they surgically removed the placenta and gave me blood transfusions. This seemed to be the turning point in my health. Add to it that 2 years later I had the same thing happen again, though this was a hospital birth. After this second hemorrhage things went downhill faster.
So I wonder if a trigger could be like what I experienced instead of a virus/illness?
ourfullhouseParticipantUpdate: my field of vision was fine.
I also got a copy of the pics of the magnified view of the veins/arteries, etc of my eyes (sorry I don’t know what they are called?) that were taken before I had my CCSVI treated. Would love Dr. Diana to see them to see if my eyes also show the evidence of ccsvi pressure.
Also realized my prescription changed ..it got “better”. Since my last exam I have had 2 rounds of angioplasty and am on Diamox. My vision is a little beter and the astigmatism I had in both eyes is now gone. ??? Can that happen from a reduction in pressure in my head,eyes, vascular system?
ourfullhouseParticipantI had the genetic test for the MTHFR gene defects as well as the APOe gene test, which I am a “3/4”. For the MTHFR there is an rx, Deplin. The apoe finally explains why my cholesterol is so high. Small dose of Simvastatin has made a big help there.
Both these genetic defects have higher risks of cardiovascular problems.
Mthfr is linked to bleeding problems, miscarriages, etc. All things I have had.
ourfullhouseParticipantI have been tested for the MTHFR gene defect and do have it. I have EDS, POTS, CCSVI, MCAS, etc., etc. I take both the regular and activated forms of the vitamins effected by the MTHFR gene defect.
ourfullhouseParticipantI recently found a great site that is answering some questions for me and part of it explains weight gain. It is:
The doctor here has extensive research into perimenopause (AKA 8-10 years of pure misery for some of us, and can start much younger than at least I thought!). There is tons to read up on at this site and you can discover the weight gain connection to too much estrogen. And, there is hope and treatment options explained extensively!
ourfullhouseParticipantSo, Gail, you have a stent? May I ask where? Mine is in the left iliac (May-Thurners). If I am understanding your post correctly, you were not able to stay on Plavix after having the stent placed because of your reaction to it, yes? So, what did you do for a blood thinner? Or, did you just go without? How long has it been since you had the stent placed? Have you had any imaging since stopping the Plavix to see how the stent is doing (is it open, clogged, etc.)? As much as I would love to stop the Plavix, I really do not want to add worse troubles to my already fragile life by having it clog, etc.
thanks,
jerriourfullhouseParticipantThanks for the info that it isn’t an effect of LVDD. I see my cardiologist next Friday and will mention it to her. It has only happened that once, yesterday. I do have MCAD and taking Zantac and Claritin (for now – Zyrtec made me too groggy!).
ourfullhouseParticipantCould Diastolic dysfunction give a person a short burst of SVT’s? I have never had any SVT’s before, all mine tachycardia has been POTS/postural related. But yesterday, while just sitting, my heart suddenly just went from normal to 180 BPM’s! It did that for about 2 minutes (seemed longer!) and then just as suddenly, kind of sputtered a bit and went down quite a bit. Stayed a bit high for a couple of hours, but only like 120’s, and more POTS like. I tried doing deep, slow breaths while it was happening but that didn’t seem to effect it. Thought about standing up, changing position, but was too scared, fearing it might get worse. Thoughts anyone?
ourfullhouseParticipantSorry, should have added this before I sent the above post….
One of the weird things I have in my blood that my doctor hasn’t been able to figure out, is that I have high CIC’s (circulating immune complex’s). Specifically, CIQ Binding Assay and Raji Cell Immune Complex Assay.
For several years when he used his standard lab to run the Western Blot for Lymes the IGG part could not be processed due to “unknown interference”. After running this twice, about 2 years apart, then we did the Igenix testing. My doctor has speculated that my CIC’s might be what interfere with the testing. Anyone else have this happen?
I also have a weak immune system, seem to catch everything, even really weird stuff that has only been found with blood tests (like H.Pylori, C. Diff, Amoeba Hyst., etc.). Always, always have very high EBV antibodies.
Okay, I just found one of my labs that does have some of those tests mentioned above. This is from a Flow Cytometry, Lymphocyte Immunodef panel (?). I only see the CD56 test, not the others. Is there maybe another name for them?
2/2011
Nk(CD56)% 6.3 (ref range 3-18)
Nk(CD56)# 115 (ref range 40-500)Also on this test my T Helper (CD4) % and # are below the ref range.
Is this of any help Dr. Diana?
ourfullhouseParticipantI’m confused… where are these tests results found that you are looking for Dr. Diana? I was tested through Igenix for Lymes, but don’t see any of those tests mentioned on that report. Help!
ourfullhouseParticipantDr. Diana,
Can you explain what you did/or took to stop your periods? My dr. tried Yasmin with the hopes of doing it for several months without break (skipping the week of sugar pills), but I all did was bleed non stop from the time I started it for 3 weeks. That was NOT helpful at all.My doctor is considering having me do 10 mg of prednisone a day to help stabilize my adrenals, but that won’t stop those whacky female hormones and periods, will it? My symptoms are SO MUCH WORSE the day before through the second day of my period. It is a for sure spend at least a day in bed if not two days!
Thanks so much for your help!
ourfullhouseParticipantDr. Diana,
Thank you for your recent video on the mast cell side of the Driscoll theory and the answers to email questions about Diamox, etc.It was very interesting to me to hear that mast cells can cause cysts in the liver! Finally, an answer! I have several cysts and no one knows why, but I also have at times horrible pain in my liver area! All my liver panals are fine, and if anything, they go VERY LOW when it is at its worst. Argh. Talk about not helpful at all!
Also, when researching Diamox more (still trying to get these headaches figured out… only on 62 mg at night – can “rebound” headaches happen? I totally get the whole dynamic componant – wondering if I should take another 62 mg dose if I wake up at night with the headache?) I saw a lot of links to psuedotumor. This is very interesting to me because when I was 14/15 and had been plagued with headaches for about a year, my doctor sent me for a CT scan (nice bonus… I reacted to the contrast, scared me bad!) and the report said I had a psuedotumor. Dr. told us it was nothing to worry about and never did anything about it.
Is a psuedotumor related to brain pressure?
Thanks so much!
ourfullhouseParticipantChicken Boo,
I also have malformed jugular valves, especially the left one and that one will not stay open with angioplasty. My IR wants to put in a stent in my left jugular and the upper azygos (it has a web that two angioplasty’s has not resolved), but wants to see if I can wait it out till dissolving stents that are being developed in Europe are available in the US.Have you had CCSVI treatment?
Along these lines, how many here who have had CCSVI treatment had their renal and iliac’s also looked at and treated? My IR does those veins also and on my second procedure (I went in to have pelvic congestion syndrome treated – yet another vein issue) and looked at all my other veins again and my left iliac won’t stay open and was determined to be May-Thurners Syndrome (I got a stent put in for that one). But also, my left renal vein will not stay open either, though it is only stenosed 50% (all my others are 70-80%).
So, I have two theory’s: One, if you have CCSVI vein issues, you probably have vein issues all through your body (I suspect the veins in my legs are faulty too, but haven’t had the US done on them yet). Second, in doing some research on the renal vein, it is linked to Nutcracker Syndrome and people with NS tend to have autonomic disorders. Dr. Diana, have you ever heard of this connection?
ourfullhouseParticipantI too have dermatographia. It was worse or the reaction was worse, when I was younger. Kind of one of those fun “tricks” I could do, like the finger tricks from EDS.
I also wanted to comment on the thyroid thread going here. I don’t have nodules, at least not that I am aware of (I do have those weird EDS nodules in my shins… oh what is the name for those? Escapes me now.). But, I am hypothyroid. My doctor treats 99% of his hypothyroid patients with Cytomel, which is just T3. Finds patients feel the best with this treatment.
Also, something some of you might want to check out, if you have high cholesterol and especially if it hasn’t responded to diet/exercise changes or even using cholesterol meds, you should be checked to see if you have the APOE gene mutation. My cholesterol has been horrible for years, but my doctor always thought it was “just” a sign of being ill and also, we had bigger fish to fry with my health that the cholesterol could wait. Well, he started testing patients that are very ill like myself for the APOE gene mutation and lo and behold, I have the mutation/defect (Mine is the 3/4 variety.. 4/4 is the worst, but 3/4 isn’t far behind). What this means in practical terms is that people with the APOE defect do not process fats appropriately…. we absorb them TOO well. This of course makes the risk for coronary problems and strokes higher and more recently has been linked to a greater prevalence of Alzheimer’s. The trick is to get those bad cholesterol numbers lower without going completely low/no fat, because our brains NEED fat.
Anyway, I would be very curious to hear if anyone else in this realm of illness (MCAD, POTS, CCSVI, EDS, etc.) also has the APOE defect. I am starting to think there is a whole group of genetic defects that might all go together (I also have the MTHFR defect).
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