Looking For A New Doc & Advice

Well, I should be more clear. I am looking for a good doc to go alongside my others. I have many. I am a severe and sensitive case. Diagnosed with Babesia through IGenX and 2 strains of mold, both Trichothecene Group and Gliotixin through Real Time Labs.

Oh, and I also am allergic to every single tiny thing I eat. Everything. So, looks like I may have MCAS.

With that said, I am trying to find the right people. I have lost a lot of weight. I need to get on this as soon as possible and time is of the matter. I am not eating well. I try to eat things that naturally contain Quercetin, such as Blueberries, Apples, etc. But I get poor results. I still react badly. Luckily, no anaphylactic shock, but I do get extreme anxiety to the point of near panic as well as red rashes that become extremely dry, extreme vertigo, extreme brain fog, stomach pain, etc. you name it! Tell me this is also an issue, but oddly enough that's been less, thankfully. More than likely, I'm lacking DAO, so I will start that up soon. But the issue is, my current naturopathy doc wants me to start treating the Babesia right away. I personally feel like we should get the math cell activation under control first because I feel like that's going to be too much at once for my body to handle. I just don't see myself handling the response, knowing how bad I am already with not treating a thing. I can only assume my mold has been being treated for many months due to the large amount of juicing I had been doing. I pushed through my symptoms but I am at a point where it has really gotten severe. I even had an apportionment with my Western doc today and he said "I think you could benefit from seeing a Functional Medicine Doctor because they have way more tests available than conventional healthcare. they also treat from the bottom up." I was shocked to hear this. He also said that I know more than him on this subject and that I should continue what I am doing.

With that said, any healthcare professionals or information or advice you want to share, please give it to me. I am up for anything. I am at the point where I cannot see things getting much worse. I am at a really bad point and I need some positive change, soon.

Please, I really need help. Badly.

So sorry to hear about your struggles.

Have you been tested for any basic deficiencies?
Vit D, Vit B complex, Magnesium, Zinc, Iron.....etc?

Sounds like you may also have a basic problem w/ general Inflammation.....
Have you tried Alpha Lipoic Acid to help your body deal with this?
Liposomal C could also be a help too.
Vitamin D3 in 5000iu + could also help over the long haul.
Magnesium is also helpful (Citrate/Maleate/Chelated) - 500mg min.
Try Zinc too (deficiencies in this can cause immune/neuro problems)
Also give a B-Complex vit. a try......

Rob

- This is not a reply, just a general message. It will be a post as well because I really don't know what to do with this. -

I woke up to an email from my doc and he said this. He did happen to ignore many of my questions. He's not really making me feel good about this...

"Hello Forest,



I have ordered the Atovaquone to the pharmacy. I have only ordered a 2 week supply so we can see how you tolerate the Atovaquone before adding in the Azithromycin; this is all after you have figured out which supplements you can and cannot take. I do recommend being on the detox if possible. I do not recommend additional phosphotidylcholine at this time. I also don’t recommend exploring taking any more supplements than you are already trying to test out since you haven’t been able to tolerate many of them, so adding in any more or trying any more at this time I can imagine would be overwhelming. Try out the Atovaquone when you are ready, as soon as you start the atovaquone please try and take it consistently for a week, please schedule an appointment 1 week in from starting the Atovaquone so we can assess and see if we are ready to add in azithromycin.



I understand your desires to assess and treat for MCAS and CIRs. Again, I want to repeat my intentions are to explore these, but I don’t see moves we can make at this point due to your sensitivities. I believe at least addressing the most acute infection can bring your body relief enough that you can tolerate other treatments. Any further testing right now in my clinical opinion would not be wise. As I had explained before some of the testing is non specific and can lead us down a rabbit hole, and I don’t think we are prepared at this time to go down that path until we have gotten you some form of relief."

Don't get me wrong - he is a nice guy. He just makes me feel like he hasn't looked into the other side of this. I keep asking why we are going after this first and not the mold. He thinks I would be too sensitive for that? I don't quite understand his reasoning other than taking out the worse one now. But, what if this causes me more hell? I don't exactly feel comfortable just killing. I do appreciate that he says to detox first. I DID tell him about how I have read on this and DID mention how there are other ways. I DID add my knowledge of NIH reports and showed my work. What gives? Or, am I just going about this the wrong way? I suggested taking charcoal, but he only wants me on 3,000 MG of milk thistle, as well as the regular herx-related stuff such as epsom salt baths, etc.

What the heck do I do!? Am I the only one that feels like this isn't... right!?

RobWireGuy said...
So sorry to hear about your struggles.

Have you been tested for any basic deficiencies?
Vit D, Vit B complex, Magnesium, Zinc, Iron.....etc?

Sounds like you may also have a basic problem w/ general Inflammation.....
Have you tried Alpha Lipoic Acid to help your body deal with this?
Liposomal C could also be a help too.
Vitamin D3 in 5000iu + could also help over the long haul.
Magnesium is also helpful (Citrate/Maleate/Chelated) - 500mg min.
Try Zinc too (deficiencies in this can cause immune/neuro problems)
Also give a B-Complex vit. a try......

Rob

I have been tested for many and have had many. The Lyme/Babesia keep draining me. This is WHEN I was eating too. Now I am not eating as much, of course I feel better not eating now. Go to eat some broccoli, blueberries, and apple, etc. and I am hit with hell. Major anxiety, vertigo, tinnitus, etc. You name it.

I am a bit confused by what you mean. Do you mean general inflammation on top of my already chronic inflammation? I mean, we already know it's chronic. My doc said "There is absolutely zero doubt in my mind you have CIRS 100% and that your brain is always inflaming many, many times per day." so I am glad he sees this, but do you mean there is another issue on the side? My doc did suggest ALA and I was actually just about to try Liposomal C! Good catch! Great from MCAS, or so I hope it helps me lol. I take 10,000 IU of D3 daily and have for many months. I also would like to make the addition of a NON fermented K2, as that will contribute to MCAS for most. My vitamin D stores have went up quite slowly, but surely. Even at 10,000 IU, it took about half a year to go from a 16 or 18 to a now 35 (and hopefully more now). I would like to be at around 80, which would be a great store f vitamin D. I have extra good reason to take it now, seeing how the winter is coming here is chilly New England. As for Magnesium, I react to that too, but am gonna try different kinds. Magnesium Citrate is also fermented, so I do stay away as it will cause MCAS to worsen for many, as well. I try to stick to others that are better absorbed. Besides, Glycinate is one of the very best forms of magnesium. It's worth spending a little extra to get a good one anyways. I have yet to try zinc, but wanted to try this. My doc doesn't want me adding anything else on now due to my sensitivities though. He just wants me on Babesia treatment and milk thistle for detox. Maybe its due to MCAS, I don't know. Oh and I use B12, but have recently slowed down because again MCAS lol. B12+B9= Histamine driver. it actually carries the very mast cells through where it needs to inflame faster this way. Kind of disastrous for many!

Wit that said, most everything we see is good these days. Well, I believe we should be looking at other things like ADH, MMp9, etc. but someday... maybe. But he doesn't thin that's wise right now. Bleh.

Wow thats crazy you found a dr who treats Lyme disease that takes insurance! There was only one doctor I had heard of that did that and the medical establishment came after him so he had to stop.

So the way the whole “does not subscribe to shoemaker’s methods” was explained to me by dr G is that dr shoemaker was very rigid in his protocols and his treatment methods are not always flexible enough to cope with the reality of complex cases. Shoemaker started training tons of practitioners and many of them are just as rigid as him. So I don’t think there is anything exactly wrong with his methods, they just don’t work for everyone and his protocols have trouble admitting that. At least that’s what I’m gathering from my doctor and Neil Nathan’s book. According to Neil Nathan they can sometimes make patients worse, when they don’t recognize extremely sensitive people and go too fast. By the way, in his book toxic, Neil Nathan would appear to agree with you that mcas must be addressed first.

Also, you’re not alone in your mcas issues… I am down to 4 foods right now. Have you looked into figuring out if you’re sensitive to certain fillers in meds? I’m sensitive to lactose.

https://neilnathanmd.com/books/ Should be a link to practitioners trained by Neil Nathan. Looks like there are more in Vermont than my state.

Also FYI apples are high histamine for me

Post Edited (Bailey) : 11/2/2021 2:53:45 PM (GMT-6)

When you are in a serious MCAS flare, sometimes your system will react to anything - even water - that you ingest until the flare subsides. I have a friend with MCAS who was unable to eat or drink anything for six full weeks without an MCAS flare sending her to bed. She had to save all eating and drinking until the evening so she could care for her kids during the day, and then go to bed once the ingestion made symptoms so much worse! Really miserable. She didn't use any mast cell stabilizers except for nettle tea, and eventually her system calmed down enough for her to eat again. My point here is that people with MCAS should be on low-histamine diets in general, but when we are in a bad flare, anything we ingest can aggravate our mast cells.

Also I very much echo Loski's recommendation for DNRS as soon as possible. It's more powerful than anything else I've tried, and you don't have to ingest anything! ;)

Bailey - Oh yes, I know that part. I meant following Dr. Shoemakers theme. He did a lot of great work and because of it, we have found so much from that. I am here in November of 2021, not November of 1999 lol. His methods DO work though, just involve a lot of suffering, unfortunately. I am just trying to get around that. As stated in a separate post, I explained how CIRS testing may reflect on MCAS patients. I have been doing a lot of work to find the relationship within each test, to better understand how to stabilize mast cells the very most natural way possible. As I have stated before, I always go after the root cause, and I see that you seat that way as well. The infection(s) may be causing most of our issues in the first place, but treating doesn't eliminate these issues. To get well, we have to work on stacking the correct formula to make the math make sense! Knowing that you have been sick for long, I don't even have to say that I assume that you know this. I think many of us do It is incredible that I have not been a part of this forum for all of these years. I guess I am where I need to be now.

Oh and as for sensitivities, I can't even really drink water without a flare of symptoms. I am one of those people. All foods cause issues currently, and it's not even just foods, it's just there. I think the best route is trying new supplements, although I generally liekto do things natural, I am one of those "exceptions" I suppose.

Yes, it seems as though it's the apple peel for many. If you try again, try apples without he peele. Different varieties can cause different reactions, due to acidity and other factors, etc. Also peeled pears could be of benefit as well. Honestly, it's different for everyone. In time, in time.


Loski01 - It's not that I am against DNRS, I just think that there needs to be a foundation. Many think psychiatric care with a therapist is the first step in mental health, and I will disagree heavily. I have a lot of experience in that part of the field, and the fact is, it's like trying to put paper towels over a fire. It's almost like avoiding the true problem. I know, probably sound nuts, but there's a method to my madness. I did this when I was young. It's a common western way of thinking. In many countries, there are various types of how to go about "therapy", and using one form isn't always the best. There is no "one fits all" kind of thing. I am just being realistic. Some day "It can't hurt", but the reason I disagree is because later, when it may be beneficial, that person may be thrown off by it not previously working. Similar to how I said past treatments didn't work for me. Addressing the correct tests and working on why a certain component is low is better than putting paper towels on the fire. That is my reasoning. This comes from the experience of seeing many, many do these things only to continue them and have no result, then fear there is "no hope" later. Now I will say, it sure beats trying drugs for help, because natural is almost always better. I am just trying to voice somewhat as a Devil's advocate. I will be trying this soon enough, but I want to be sure of what is happening with my tests, then getting MCAS better under control so I better know what and whee my results are coming from. I hope that makes sense. It is certainly not the common thing for someone to say, and I can very much understand why someone would disagree with this, and that's perfectly fine. I just want to reiterate, I am not against it, just think that alone will not give me results. It is also not the most important step going forward. It is however important, as it is a great step with proven results.


Saraeli - Yes, I happen to be one of those people that react to everything, even water. I am lucky to use reverse Osmosis these days, although I fear not getting enough vitamins and miners between the food and water, but I have to do what I have to do for now.

Yes, I do plan on doing DNRS. I just want to be sure I pursue the correct steps moving forward. Right now, I have found foods that reduce my symptoms and the plan is... sorta working. I am getting there! Lol.


Bailey - My thing is, I seem to react to a lot of the stuff in those kinds of formulas. I seem to fare better with... starvation lol. I might as well joke about my pain. But seriously, I have to sometimes push down whatever food I can. I do believe in trial and error, but mostly with food, not drugs as much. Even supplements have been nasty for me with this. I like to give myself a break often as well, because the body learns quickly. It's best to outsmart not just th bacteria, but our own selves at times. Trying to find the correct plan can be daunting, and also so frustrating. I am working to stabilize myself without anything and it's actually kind of working today after a good long sleep. I am going to be attempting high dose Vitamin C soon to see where it goes. I have read that it can be beneficial anywhere between 1- even 6 grams. Of course, no one should take all of that at once, but if that's what we need, it's what we need. I also may need to try different kinds. I am defiantly a newbie when it comes to MCAS supplementation.

Side note: I like that company. I will keep that in mind. It's worth keeping for later down the road if I am having more trouble.


To everyone - thank you!