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New Doctor - New Ideas - Could This Be The Answer, Or At Least A Part Of Our Puzzle?


issie

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Bless you Issie for being the guinea pig :) I do so hope you see results with it.....interesting enough Lyme Disease was one of the first things my internist tested me for but all came back negative but even he said the tests aren't very good ;).....at this point I am willing to try anything....the MCAS protocol is helping but only by a little so far.....diet is also my next step.....what is there left to lose? Please keep me posted on how you are doing :)

Bren

Bren, I was thinking of you when I watched a video today of a girl in her early 20's who had Lyme disease and also this protozoa. She and her new husband went through quite a long and hard journey to find the reason for her terrible pain, sky high heart rates, headaches. I remember a post you made where you were having some sort of seizure and this is how this girl did. It took her 3 years to finally get a DX and for the treatment to get her better. She has a movie on the internet that her husband made through her journey. Interesting that she found Dr. Fry and with the change in her diet and an additonal drug to break down the biofilm of the protozoa - she got better. She has a blog and a utube movie out. You can find it by looking up Dr. Fry and curable FL1953. (I have to warn you - the movie made me cry. The poor girl was in terrible pain. But her loving husband was there for her all the way.) You will go to her blog and then click on her movie. It is over an hour long.

I have some HIGH hopes. Doing good so far. My friends are starting to notice a difference in me too.

Issie

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Issie :) I am so glad for you that you are finally maybe making some headway....you go girl!! lol

that is so sweet of you to think of me :) I have been going through an awful time right now with the possible onset of Cushings thanks to the florinef steroid.....so I am now having to taper and boy is my poor system feeling it :( I may have to look into having it compounded and wean that way? Also, I was told I am having liver issues now.....scary....the mast cell stuff is kinda at a stand still likely because of all the other things my body is dealing with.....I know in the past you mentioned you had kidney issues....every anything with your liver?

I will try to look at the info you suggested later today when I get back from my ultrasound....PM me if you feel up to it :)

I really am sooo darn happy for you Issie that you are seeing some positive changes :)

Bren

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Yeah, I have kidney issues - I'm in 3rd stage of Chronic Kidney disease and just found out that my kidneys are not functioning properly with detox - one is worse then the other. My kidney doctor does feel that the swings in my blood pressure (both highs and lows) have contributed to the decline. He is thinking there may be more to it, but POTS and the blood pressure swings are a contributor. The highs put pressure on the veins and the lows make there not be enough blood flowing through. He said he suspects volume issues. (Some have hypovolumia. So, that may also affect the kidneys.) Since I have low renin and aldosterone - he isn't as concerned about that - as he would be if one of them were high. So, in a way ---that has worked out to be a good thing. I told him about the florinef and my trying it and it giving me terrible edema and causing migraine headaches. I also was always on the high end of the sodium scale - both with serum and urine - even without salt loading. He made notes and said to make sure that he has a list of all the POTS meds I've tried. I handed him two sheets of paper with a list of drugs and what all the things did to me. He said, it is good to keep a list with symptoms - of both success and failure and have that with us for all doctors to have.

I also have liver issues. Have had issues with P450 clearance for decades now and have developed a liver lesion and fatty liver. Have to take all kinds of support (alternative supplements) for my liver and make sure to keep it running the best as possible with the few meds I DO take. Everything has to pretty much be detoxed through your liver or kidneys. So, very necessary to pay very close attention to both of those things.

You know, I've always questioned long term use of florinef. Lots of people don't appreciate that fact about me. But, I stick to my feelings and ideas about that. Sorry you are having problems with your adrenals now.

I did have to lower my amount of GastroCrom and I don't take as much antihistamines as normally RX'd for MCAS. I think the least amount of things that you can take to manage symptoms is probably better ---less for kidneys and liver to have to process.

Issie

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I'M SOOOOO EXCITED. My doctor just called and they did another CBC on me to see what my levels are since I've been on this diet almost 2 months now. My kidney GFR levels have come up 20 points and now - I'm in the middle of Stage 2 Kidney Disease --Instead of Stage 3. YAYYYYYYY! That is good news. Doctor said don't change a thing!!!!

Issie

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Thanks everyone!!! Yes, it is a good pay off and makes me more determined to stick to it.

The diet is mostly the McDougall diet but lower fat. I'm not supposed to have more then 20 g of fat a day and I'm strictly vegan. No animal products at all. I'm supposed to greatly limit gluten and no supplemental magnesium. Most of this is because of the protozoa and co-infection. But, the benefits, so far, are well worth the effort.

There is also another site that is very similar to this diet called Forks over Knives. Forks (what you eat) over knives (surgical ones). There are some really good recipes and testimonials that you can find on there.

The key for me in order to stick to this diet, and to see that I'm getting enough protein and keeping my fat down, is keeping a record of what all I eat That helps me to know what foods have in them and how I'm doing. I found a web site that I enter all my food into it and it breaks out all the vitamin, mineral, fats, carbs, proteins etc. It's called SparkPeople. That has helped a whole lot.

I had one person start talking to me about what all I was giving up - to be a vegan. I don't look at it that way ---I'm hopefully gaining much more with better health. I don't look at it as a chore or something I have to do. But, an interesting, learning journey that I'm enjoying. Learning new ways to eat and cook. I see it all as positive. I'm not missing out on anything. You have to have a good attitude and much determination to succeed at this ---I have both.

Issie

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Issie that is excellent news that you have seen such an improvment so far and especially with your kidney function.

Have your vitals changed at all since being on this diet like HR and BP?

The only thing a lot of us have to watch on here as its so important to us is if we were not taking magnesium suplements, its likely we willl see an increase in things like headaches and migraines amd heart and muscle funtion. I take magnesium for my heart and head and just wonder if by doing this diet having no to low magnesiatum what effect this could have in the long run? Have you thought of that? Do you know how much magnesium you are getting from the diet exaclty.

I just wanted to post this link too, as we were all discussing CCSVI earlier in this post and especially related to the Driscoll theory. This video was recently done by her explaining that getting to focused on CCSIV which limits problems to the neck only and freaks Dr's out when they hear the word angioplasty as so little research has been done. Its believed by her further research the problem with our veins is more systemic rather than the neck only. In a way very similiar to what Dr Fry is saying but for different reasons. So maybe we are getting closer to another answer of the problems we all suffer, maybe its our veins with all the different Dr;s looking into this now.

Here is the link anyway

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Still doing well on the diet and herbals for the protozoa. Noticing improvement with standing, handling stress and still losing weight. Have much less tachy then before. Most everyone around me has noticed improvements - even some that I wasn't aware of.

One thing I noticed on the testing from the kidney doc ---he made note that I was hypovolemic and my labs indicate this too - with high salt levels and also high albumin levels. His nurse called and said that I can't do what is normally done for hypovolemia but to try my best to stay hydrated. I think that is still an issue and one of the main issues with my POTS - as it can cause vasoconstriction and increased NE levels. So, trying to make sure I drink my lemon water and also found a pretty good coconut water that is 0 in fat.

All my other labs are well within the normal range. So, things are definitely improving. Hoping for things to continue in the right direction. Still loving the diet. Also, messed up again with too much fat and there was a definite difference in how I felt. It was not good and it lasted for a few days before I recovered from it. So, the low fat thing is crucial with how I feel.

Issie

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does this mean you do have protozoa and you found your root cause (aside from EDS and MCAS)?

Not sure how much of a part the protozoa plays in my POTS -----but, I'm sure it has to be a part of my picture. Since there are two types of organisms that testing has detected ----getting them under control ----can only be a good thing.

I think that treatment for MCAS has also been a very good help to me. With EDS ---not much that can be done for that ----but, the things that I'm doing seems to be making everything more tolerable and things seem to be improving.

Most of you that have been following me ---long term ----I've been on this forum for about 3 years now ----know that with a lot of the things I've tried they will work for a time and then something happens and I'm not able to continue taking either the meds or whatever improvements seem to settle out and not progress -----I've been on GastroCrom for about 4 months now and that with Allegra and Zantac has been a great help with my MCAS. I've been on this diet over a month now and still seeing improvements and sticking with it. So, I will stay on this path and see where it leads me. The herbal that I'm on for the protozoa is no longer making me sick and I'm able to take it with no problems now. I'm to see the doctor again next week and we will see if anything is added or I need to just give it more time. So far, I'm encouraged with my results. But, still not cured. But, already a good bit better.

Issie

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Someone informed me that one of my post above sounded like my diet may be not helping as much as I had hoped. WRONG ----it is helping tremendously. I can start making list of how much this is helping me. I just am not noticing that my POTS is COMPLETELY improved yet. I want instant fix and want a few months to undo what has been a lifetime. The doctor yesterday informed me that it will take time. POTS is a hard one to correct and the improvements may be very subtle. But, there are improvements. I mean my kidney function has improved greatly and I'm losing weight, my finger nail ridges are going away and I have moons in my nails now, very little issues with nausea - bloating - or potty issues. The whites of my eyes are not all bloodshot and the blue is clearer. My skin is looking better and my keratosis is leaving. I'm having less edema and can tell my circulation is better in my peripheral limbs - varicose veins are improving. My blood sugar has gone from slightly high to normal too. I can keep going - if people want more of a run down. But, in this short time there have been MANY improvements. I went shopping to 2 stores yesterday, walked around and stood for quite awhile and did okay. I still got the bit of tachy from standing in line too long at the last place. But, I did it and spent over an hour in the stores. That in itself is AMAZING. The tachy and higher bp with standing is still there and there are still those awful adrenal HyperPOTS surges. But, things are improving. Just in my labs alone ---the improvements are noticeable. I think my friends and my husband notice the changes more then I do ----I have so many people making comments about how much better I look and how much improvement they are seeing.

Hoping that time will continue to improve things for me. With the things I've seen in 2 months ----I'm confident that they will.

Issie

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I was just looking over another forum and noticed that Dr. Driscol has pulled most all her videos and statements about CCVSI. Her comments were that she and her kids are NOT taking Diamox daily now - except with flares of colds/flu etc. She is crediting most of her POTS improvements to treatment for mast cell issues. (I know for me the Diamox helped with my head pressure - but, long term it was awful for me. I do however have issues with sulfa drugs. But, the acidity that the Diamox caused was terrible and trying to balance that was worse then the treatment.) She is telling people to treat mast cell issues. She recommends the H1 and H2's and also GastroCrom or Ketotifin. I myself have found that this treatment and using GastroCrom has been of GREAT benefit to me too. The other thing she is saying is to thin the blood. Interestingly, I'm on an enzyme that does just that. Not only will it help to break down bio-films - but, has some blood thinning properties. I also use turmeric ---which I have been using for quite awhile. (Some have found that turmeric helps with their POTS symptoms.) I'm adding one thing at a time. Right now, the new enzyme has thrown me into another herx. But, that was to be expected. When the bio-films break down then the immune system can recognize the protozoa and co-infections and start to eliminate them.

Issie

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For me, I have occasional migraines. I also have pressure behind my eyes and in my head. It feels like I need a pressure relief valve to open and it would help. My eyes hurt sometimes really bad - like they are "bugging" out - with pressure. I'm not sure what causes this. I've had eye appts. (even with a Mayo eye doc). My glaucoma pressure is okay. There is some theory behind possible issues with hydrocephalus - not enough fluid drainage with spinal flow in and around the sinus and brain cavities and with spinal fluid flow. There are also ideas out there that there is venous flow issues from the brain caused by faulty veins in the neck (CCVSI) and also possibly high deposits of iron. All of these things are theory at this point. (This is also a theory with Multiple Sclerosis.) I'm not sure that any of it has been proven as issues with POTS. But, there is a lot of speculation on these two things as causing issues. They know that there are blood flow issues above heart level in POTS. What are causing these issues and what will correct these issues ---is something many are trying to figure out. My doc. thinks that there are CCVSI issues and is thinking that when my veins are more clear of these organisms - my POTS should get better. I'm hoping he's right. So far, everything he has given me has been of benefit. So, I'm very hopeful that things will continue to improve.

Issie

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Hi, just wanted to jump in on this subject, I got my tests results back yesterday and I am positive for protomyxzoa rheumatica as well. It appears, from the picture my white blood cells are trying to attack the protozoa so that's good. Doctor Fry has prescribed me minocycline, which is a very gentle antibiotic, used to treat many for acne but he has had success treating the protozoa with this along with the very low fat vegan diet. His first indication to test me for protomyxzoa rheumatica was due to Sonora Q lab autoimmune testing showed inflamation. He believes that most autoimmune and chronic illnesses are caused because of this type of bug. Ann F. Corson is another doctor who treats the protomyxzoa rheumatica. Below is a link and it actually shows pictures of what the protozoa/biofilm can look like.

http://protomyxzoa.org/images/Protomyxzoa_rheumatica.pdf

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