issie

Also of huge note - I found articles on baking soda showing it hinders blood flow. Which is already a problem with POTS.

With Diamox you are to take baking soda to counter the high acidic environment it causes. An acidic environment in the body is dangerous for so many reasons.

Diamox is a diuretic and we need our brains and our bodies hydrated. (The hypothesis of the suggestion is hydrocephalus- too much fluid in the brain. Usually measured with a spinal tap.). My head pressure got better when I addressed my MCAS with meds for mast cell issues. Those meds still help me with this.

Also Diamox is a sulfa drug. Those with CBS mutation with methylation should also be cautious.

Despite my loving to research - at the time I tried this - I didn't have the knowledge then that I have now. Desperate people, do desperate things. I was desperate- but it went bad for me. Despite some of my more knowledgeable friends questioning me - I decided to try this. Wish I hadn't.

I know some claim to have success with this. But I'm not sure what their long term effects will be. I recently heard the promoter of this hypothesis say she and her family are no longer using it. They have since gone on MCAS meds.

I recently found a video of the guy in CA who does the opening of the jugular veins with ballon angioplasty. He has a video on in regard to CCSVI and Lyme. He also says the effects are not lasting for all. Some get a couple to 6 months help from it. He said he had a few with some improvements for a longer period. So maybe my doc is right that this is only temporary fix and then things are clogged up again. It is a bandaid and doesn't address the root cause.

Issie

This sure wasn't a help for me. And very possibly Caused more issues.

My doc does NOT recommend this nor does he feel the surgery for CCSVI is beneficial for long term help.

Issie

Looking back on this, I think this may have been what threw me into Chronic Kidney Disease. The edema I got continued to get worse. I had heart work ups first. Then kidney. I was in 3rd stage CKD.

Good news is I reversed it. I became Lowfat, whole food vegan. Also addressed MCAS. And Addressed Lyme and coinfections and Protomyxzoa Rheumatica that mostly addresses the immune system and inflammation. Proud to say I'm now in Stage 1.

Thinking about science and what we now know about the brain and it having a lympathic system. Makes sense there may be a backup if that lymph isnt draining properly. But being a diuretic is not so good for POTS, We need more hydration with POTS - not less. (My doc feels part of the issue may be connected to the biofilm that surrounds the protozoa and adheres to the vein walls causing issues with flow and vessel constriction and dilation. He is aware of surgeries for CCVSI and says it can help temporarily - but within a time period it usually clogs again.)

Some of the side effects of this med along with baking soda (because of the acid it causes) is kidney and heart failure. Baking soda can actually hinder blood flow. (I have references if someone wants them.) Was a very bad trial for me.

Issie

Have you tried turmeric? Also for me, two of my best meds for POTS and pain is the combo of Tramadol and Bentyl. (I'm not on right now.)

Lately trying something new and off most meds and it seems to be working pretty well - it helps autoimmune system and anti inflammatory and has H1 and H2 properties - Black Cumin Seed. I'm mixing it and turmeric together in green tea and drinking it like medicine. Helps moderate quinolinic acid that affects NMDA.

Issie

Mast cells tend to degranulate worse at night. Ive found that two things help the itching and I rotate what I use. Over the counter hydrocortisone cream or NasalCrom sprayed on skin where it itches.

Issie

There is a Protozoa that I have that Is Similar to malaria. It causes neurological issues like you are talking about. Have you been checked for Lyme and co infections. See my threads on Dr Fry and the Protozoa he is researching.

Issie

Thanks for the info. A few years ago, I asked Janie (Dr Gs nurse) about ketotiphen. They didn't know about it then. She did some quick research and I stuck with the GastroCrom. I don't have as good insurance now and trying to find an alternative.

Issie

No I haven't tried ketotifin. Is Dr G using that along with GastroCrom or as a substitute ? Is it any cheaper in price? Does it still have to be ordered from Canada? I tried going off GastroCrom and couldn't do it. It is still very necessary for me. I also tried to stop the doxy antibiotics and antimalarial herbs and those are also necessary. Dr Fry uses Plaquinol with some. But hasn't with me. He said he has to check to see if a person has a certain enzyme to break it down before he puts someone on it. It could make someone really sick. His suggestion as an alternative for it was curcurmin. That was too strong for me and I went back to my turmeric.

Thanks for the tip on the vegan restaurant. I will have to check it out. I also don't eat soy. So hope there is something soy and gluten free there. My vegan diet has been a big help. Even my hubby is now mostly vegan. He was skeptical to start with. But now encourages me to stick with it and anyone with health issues he tells them to ask me about my diet. It has saved my life - literally. Not easy to do - but well worth the effort. There is a Whole Food store on Scottsdale road close to Mayo and you can eat vegan there too. It's not cheap. But it is good. Chipotle is another option and Sweet Tomatoe and ordering sides at Chilies. It can be done, just takes some planning. There is also a place called Chompies that has vegan split pea soup.

Issie

Janet, there is a thread about an alternative that has helped some, on this forum.

I find my protocol to be very significant. Addressing my immune system with DIET first and then low dose antibiotics and antimalarial herbs. Continuing the mast cell protocol. And my supplemental things. ---I'm mostly good!!!! Mine is definitely autoimmune related and I was offered IVIG too. Didnt do it.

Since I'm trying to be strictly lowfat, whole food vegan. The alternative supplement to IVIG (colostrum), I'm not using. I have in the past and found it to help pull me out of a bad flare.

Issie

Still believe in this. It sure makes a difference. Still finding the key to be low fat. He told me today that I dont have to count the fat in a whole vegetable (except for things like avocado and nuts - which are mostly fat). Those you can have, but no more than 20g of additional supplemental things. Nuts for example is a garnish. Limited in amount. If you have another splurge (chips or a food bar) you count the fat grams and dont go over.

There is another paper under review. I will post when its available. It will be very interesting to POTS people.

Issie

I can't take either of those antihistamines either. Only the two I listed. And I use only 1/2 of the Zantac.

The urine test and blood test are only good if you are in a flare. Otherwise, likely, they will show normal. The only thing that will show is mystocytosis. With MCAS there is no rhyme or reason. You never know what will trigger it. Do a search on the forum. There is a lot of info on this.

FYI - Tagament can lower DAO. And aspirin can cause a degranulation of mast cells.

I tried neurotin, it helps pain but caused depression with me. I believe it doesn't help mast cell issues. There is a bit of an issue in regards to GastroCrom - there is no other alternative. I think there is no other drug like it as an alternative. And it is UNREAL expensive. I had good insurance and no longer do. Trying to find a way to get the pill form and I will mix it in a liquid myself. Is about half the cost that way.

Issie

I need to figure something out. I am miserable. My OI is better than earlier on, but my pain is off the charts now. I am apparently allergic to everything, so I am not sure where to go next.

Look into MCAS (mast cell activation syndrome). It may appear that you react to everything. But if you were to have allergy testing you may not show allergic to anything. That doesn't mean that your histamine receptors aren't in overdrive. Addressing MCAS was one of the best things I did. GastroCrom was a HUGE help for me. I tried to go off recently and had to go back on. I think it helps the immune system too. I have to do an H1 (Allegra) and H2 (Zantac) nightly. I use GastroCrom 2 times a day instead of recommended 4 times a day.

Issie

I'm lowfat, whole food vegan. The diet my doc has me using is by Dr McDougall. You can look him up on line and he also has written some books. I like to listen to his site and I subscribe to a few other sites that keep me motivated. I like Dr Gregors site as he is all about science and explains WHY this diet works. I also like Forks over Knives. The idea behind the name is we can avoid the knives of surgery if we change what goes on our forks. I also like Engine 2 and his dad's discussions who is a heart doc, Dr Esselstyn. There is also a book written by Dr Campbell called the China Study. There are many other doctors who are pioneers and advocates of this lifestyle. These are the ones I follow and listen to. This way of eating is not something new. It's been talked about way before some of the other eating styles. There is a lot of science and people proving the science of its value. It's working for me.

There are a few supplements that you need if you do this diet. I supplement with Vit D, iodine in the source of kelp, and Vit B12.

To keep in mind in regard to the biofilm - I'm not allowed to supplement magnesium. It increases the integrity of the biofilms and it fuels the growth of this protozoa. My doc has found that most all his patients are low in magnesium. He thinks it will balance out with the lowering of the pathogens that are using it up. But for awhile he has found we have to be low in order to try to lower these organisms. I haven't really missed it as a supplement. I think I get enough in my foods. The idea is to get your nutrients in your food and not need to supplement. If we eat healthier and get them in a whole form and not syntheticly broken out, our bodies should assimilate and use them more effectively. That being said, I still use some supplements, but not every single day. I use them a few times a week.

Remember there is an adjustment period and a detox that will happen. You feel worse before you feel better. If there is a protozoa there could be a herx reaction and that is VERY uncomfortable. But it helps you know you are going in the right direction.

I use an app called SparkPeople that is free to keep up with my protein and fats. You must have enough protein or you won't feel satisfied and you could lose to much muscle. Starch from a whole food source is vital for energy. And keeping your fats low is the other key. You need some fats, just not as much as most people have.

Issie

Thanks :-)

One thing thought to help is progesterone. It is thought that there is an estrogen dominence issue. I wish I had tried this before my complete hysterectomy. That was my 8th ab surgery due to endometriosis and a ruptured appendix. I was 36 when I had my last surgery for all the damage. I've talked about it before so you can look it up.

Issie

It is thought there is a connection between mast cell activation syndrome MCAS and endometriosis. I had it. Do a search on the forum. We talked about it years ago. Sorry you may have it. It is not fun.

Issie

Interesting! Hope it helps him.

Issie

I'm not sure about how long antibiotics and antimalarial support will be needed. I tried to stop the antibiotic and antimalarial herb, but had to go back on them. I've been doing this for 2 years now. Since, at this time, there is no way to erridicate the Protozoa, the diet is absolutely imperative. It makes a huge difference. One other med Dr Fry uses is Plaquinol. I have not used this one. He said I could try curcumin instead. I was not able to use it, it initiated a herx with me - that was too intense. I went back to turmeric and ginger. He also wants me to eat lots of papaya. That helps break down proteins.

Glad you can see the connections. I hope it will help others.

As for Dr G - I haven't seen him in a long time. I should call and give him an update. I would think if anyone with as bad of a history as mine could improve - he should be interested to know what helped.

Issie

If you have MCAS beta blockers can make it worse.

Some of the people I've researched with have wondered about too thick blood. I have found, for me, using things that thin down the blood help with my POTS too. I use Turmeric and ginger and it helps with pain too. Some people with MCAS use a baby aspirin to cause a slow release or degranulation. The idea is that you may avoid a massive dumping with a slow release. Trying this didn't work for me. I felt worse on it. I seem to have to thick blood too and the presence of biofilms possibly could explain some of this. My mom had problems with blood clots several times in her life. That was one thing that contributed to her death. So I for sure want to do everything I can to prevent this.

Issie

Yes, that's what I suspect with some -high dopamine and glutamate. Of course, it's just a feeling I have with no concrete testing to confirm. Would be interesting to see how many that is a problem with. Be careful with anything with aspartame in it, it will up glutamate even more and could cause a flare with MCAS and POTS symptoms. (Chewing gum, just about all have it in there.)

What about Pepcid instead of Zantac?

Too bad the Tramadol didn't work.

It may take longer to notice sensitivities to gluten and dairy. That's not really even long enough for the cravings and withdrawals from it to end. We crave what we usually are sensitive to. Many won't test positive for a true allergy, but could be sensitive.

Glad he is on B12. Have you addressed his other mutations. Usually other things are needed too and a certain order has to be followed for treatment or you can make yourself sicker. Go LOW and SLOW. More is not better when tweaking this.

Hoping for the best for him. Yes, I'm very glad that I'm so much better. I do believe with my whole being this is autoimmune for a good majority of us with inflammation running a close second. Of course the genetic flaws make us more susceptible.

Issie

Have you tried ALA (if he has CBS mutation, work on that first and get his methylation pathways working. It is a sulfa supplement. I had to work on that for a few years and recently started taking it with no problems.) with that and also ginger and turmeric? Also B12 is usually used before the methyl folate. Too low levels of that can cause neuropathy and other mental type issues.

Tramadol regulates all the neurotransmitters and works on opiate receptors too. Helps balance out glutamate. Helps with pain. Best med for my POTS. Along with Bentyl -a muscle relaxer. Did you get him eval for EDS?

You don't indicate in your sig line if he is taking Zantac (I take 1/2 pill). If not, you are not covering all the histamine receptors. You have an H1 with Zyrtec and H3 with Singular. But no H2. I was told it is necessary because there could be a conversion into one that isn't being suppressed. I felt GastroCrom was a lifesaver for me. I was on it for about 2 years for my MCAS and Kounis Syndrome. Recently came off and so far so good. Diet change and addressing immune system with diet and supplements has changed my life.

Look into D2 also. I've said for years now - I think there is a dopamine and glutamate problem. Look back on some of the old threads.

Issie

If you lower the heart rate too low and there isn't enough blood getting to your heart and head, there is also a lack of oxygen getting there. Sometimes the tachy is a good thing when we are having blood flow issues. If you are if a certain subset type - HyperPOTS and possibly low flow. That can explain it. With me I have a higher bp but am more sensitive to the drops which may only put me to a normal bp. With a Hyper subset, many of us also have MCAS. This can cause what feels like POTS symptoms but is due to mast cell degranulation. Can explain the asthma too. Lots of threads on this forum about this.

Issie

One anti acid med I tried caused a major POTS flare. So could be med connected.

I've had POTS since I was younger than her. Can be genetic connections and also something passed on. Majority of my family has some sort of autonomic nervous system dysfunction. With me, looking into the immune system and inflammation has been my best solutions.

Issie

So happy to hear that Janet. I'm glad my efforts with the docs are paying off for others. Makes me glad to have been an aid to learning and discovery.

Issie

Thanks Liz!

I hope you are doing better too. I've been off the site for a pretty long time, so haven't been keeping up with everyone.

Issie