SCD and me

So it will be 3 weeks tomorrow on the SCD diet. This past Friday I started to feel really fatigued and achy and barely made it through my shift at work. I got home that night (2nd shift) and collapsed into bed. I woke the next day feeling horrible and flu like. I got up late around 10am and ate something and even found the energy to mow my grass which needed it. Around 1pm or so I felt the results of trying to do to much and being sick and had to go back to bed where I stayed till the next day. That evening I had a temp of 100 and was nauseated achy and exhauted but never vomited or anything. I kept thinking is this the HERX I keep hearing about? After all its been about 19 days since the start. I kept thinking this will be ok if I have to go through this and at the end of the tunnel come out feeling much better.

 Well I do feel better but still feel the effects of the flu today. My crohns colitis is still the same so nothing has changed on that spectrum. I was really hoping that the SCD diet will be a game changer. My old diet pre DX. was a tons of bread and potato and beer as if I was addicted to it. Needless to say this diet isn't really doing anything so far for me but perhaps I need more time? In the mean time I am losing more weight and confidence in this diet. So do I give it more time? or?

My wife is being as patient as she can be at this point and I am blessed to have her and her understanding that I needed to try this.

Hey PK, The Lyme was a misdiagnosis per my GP. I gave up on the lyme doctors because they were costing me a ton of out of pocket cash. I took the doxy for 3 weeks and stopped and thankfully I did because my regular doc who I had not seen in a couple years read all the results and said " This does not indicate you have lyme disease" The mycoplasma was indicating that I had something at one time in the past with my lungs but not now and the other reading which was the lyme according to my regular doc was not justification to put me on antibiotics and he said you don't have lyme disease according to this test they took. Needless to say my GP put me on nystatin because of my concern with thrush and canidida from more antibiotics. I did that for 2 weeks and it did nothing for my condition. As far as how I was feeling at the time when I look back perhaps it was more hoping and placebo than anything. Not sure but my crohns colitis remains the same. It seems to wax and wane every couple months.

I am running out of options...

All the while I am developing some new symptoms.. My kneck and kneck/shoulder muscles ache and it feels almost like I have arthritis in my kneck. It started around early march.

Post Edited (twiggs) : 6/2/2014 11:15:13 AM (GMT-6)

Your GP was wrong. They almost always are. They tell you IGM western blot means antibodies, but with the right bands it does not. You have to see lyme literate doctors. Most doctors know jack crap. it sucks to pay out of pocket, but it sucks to stay sick. You said nothing but positive things and did not report any negatives.. but.. yeah..you should look back at what you wrote then. You were more then hopeful. You cant fake energy. Best of luck to you, but you stopped the abx too soon :( Igm mycoplasma does not mean past infection they are finding out so much more about mycoplasmas. Ignorant doctors just annoy me so much.

As someone who failed with SCD several times yet found remission through alternative diet mod. I encourage you to start tinkering with your food list. 3 weeks is plenty of time to see improvement. If you have no improvement then it's prob. not happening.

I never had a Herx response to diet at any time. I think it may be like a detox where your body wants something bad (usually sugar and sugar comes in many forms including starches).

Some of my problems with SCD were (and you may be different):
too much fiber from almond meal causing constipation and generally sluggish bowel.

Intolerance of SCD yogurt. It took a long time before my gut tolerated dairy so removing all dairy was necessary until reaching remission. I still don't eat yogurt but milk and cheese are OK now, after remission).

Intolerance of fruit and fruit juices. Had to remove all of them to get better.

No alcohol until gut healed was best for me.

I can't now remember all the SCD legal foods that kept me from getting better but those are the biggies. I threw all my pre-conceived notions about why a food was good/bad and just let my gut tell me what to eat, by it's happiness/unhappiness. Duh, right?

Best of luck. In the end you will know if food makes a difference for you. Valuable information.

Eat rice, potatoes, carbs, you'll feel better.

Oh now my head is spinning. I wish I can reply to all of you but simply do not have the energy to do so.. PK, I looked more into what the CDC says about A. phagocytophilum ehrlichia and the proper course of Doxy and they suggest 2 weeks on it which should clear things up. I took it for 3 and here I sit today with health problems. I guess I just don't know enough about this stuff. I really am confused and malnourished at this point.

I was disappointed in the Lyme office because I sat there for 1 hour and 30 minutes to see a PA to be told keep doing that your doing. Then I got a bill for 600 dollars! I called them and said no way I am paying that much. Then I found out that the doctor who was the secondary doctor who was well versed in Lyme left because of his own illness. I was like what the heck is going on. So now after 1300 in testing and 3 visits of out of pocket 300 for each  or over 2k total I was pretty discouraged. They were offering to set up an appointment with the primary Lyme guy there but I declined. I most likely will revisit. I was broke and my energy was still up and down along with my gi symptoms. I thought that after 3 weeks I would see some change in my GI. Even now I have ups and down but since the diet I struggle to get my energy. Although today I feel pretty good but that can change fast it seems.

I really appreciate all your feedback. I am not sure now what I am going to do but will start eating my normal diet. I am done with SCD. I have to look more into this Lyme disease again and question my GP.

I cant afford to go back to that Lyme office but perhaps I don't have much choice. If I can get my GP on the right page perhaps that would be the route.

PK, Please don't give up on me I been through a lot. And that you all for your time to reply.

I still have the rest of the doxy in my drawer..hmm

For now making a huge breakfast with potatoes and the works. I am starving..!

p.s I bought some good strong olive leaf extract and was wondering if I should take it? its the 20% oleoprin..

Post Edited (twiggs) : 6/3/2014 10:01:36 AM (GMT-6)

bananagirl, I did vitamin E enemas a while back which ended in disaster. I have not done or tried a FT yet.

Oh so you did try the Vitamin E yourself! It looks like you have things well under control which is great. Me, I am still a work in progress but at least I am eating what I want as of this am! I am really thinking I need to follow up with this Lyme DX again. Which I will be doing with no doubt.

PK, Actually I don't have a lot of faith in my GP and has struck out in mnore than one occasion with me but I weasnted him updated as far as records go. He gave me his opinion but that doesn't mean I am taking it. At the same time I thought I was not getting good service and with the doctor I was seeing not being there I felt compelled to stop going.

I also realized just the other day that the reason why the costs for seeing this other Lyme doctor who they gave me in place of the guy who was booked up was not in network. I origionally went to this place because the one doctor they had there who was booked up nut was actually covered as in network and was the lyme specialist.

In the mean time I gave a lot of thought to this and am revisiting the results I got from my testing. I also found the original doctor who I intended to see the first time in a few towns over practicing and made an appointment. He is a 34 year old and speaks Hindu but is listed under my insurance plan as in network so the costs should be much lower. I guess he is a family doctor but treats Lyme specifically as to what I am seeing on Health grades. I plan on taking my results from the testing I had done when to see him on Friday at 8:30am.

You are correct I don't have Lyme but did show a titer for..

A. phagocytophilium IgG 1:64

(Single IgG titers = or > 1:64 suggest past Anaplasma (HGE) infection or early response to recent infection. Test performance charicteristics determined by Clinical Laboratory Partners. Not cleared or approved by the UD FDA.)

The other that was interesting is my lowering platelet count which was 138 and had been 150 and higher in the recent past. So it seems to be dropping over time. I read all over the internet about Anaplasmosis and one of the main symptoms is your platelets drop. This and the other symptoms basically give them the go to prescribe antibiotics from what I read. I don't see that I was given the Western Blot test.

I always felt that I had or have something chewing away at my energy and my immune system. I felt it was something bacterial or viral. It waxes and wanes like clock work too and it seems to flare with the flu episodes and fever which I have had for a few years now and get them way too often. I am always sick like at min 6 times a year. So about every 8 weeks I am laid up sick.

I am still taking probiotics but will also start taking the olive leaf daily. I am not sure if I should take one or 2 a day. The bottle says 2 a day with meals.

I stopped the SCD diet yesterday. I lost way too much weight and had to stop. I ate 2 hash brown potato's at breakfast a whole subway grinder with Cheetos for dinner and a big lunch and had a better movement this am than I had in the last month! I think I doubled my calories in one day and plan on doing that from here out. I just cannot afford to lose any more weight especially on that diet.

At one time I thought I had to mod my diet to combat fungus but I believe that fungus is not an issue anymore or cant be sure it ever was in fact. This was when I took heavy WOO for like 8 weeks and have since been on Nystatin for 2 weeks....

Thanks for your support. I will let you know how my LLMD visit goes this Friday. I am going to bring my extensive testing results from early February with me.

Update:

Looking back at my testing I am finding some other interesting things.

One of the other flagged abnormal test was the Lymphocyte, Absolute being low at 1.09.

I am reading that Lymphocyte, Absolute 1.09 alone can mean some type of Viral infection present! I see that my WBC was 4.1 which is at the very low end of acceptable. The RBC is 4.72 which is also at the low end of acceptable. Hemoglobin 14.8 and Hematocrit 45.6.

What do you think? It would appear that I am fighting some type of Viral infection also? This and the fact that my white blood cell count is on the low end?

I just read that "Lymphocyte, Absolute" is another name for white blood cells! It looks more and more like I am fighting a viral infection? Then why didn't my GP or even the LLMD the first time say this to me? Or did the LLMD just head in the direction of targeting the Ehrlichia?

I have a lot more questions now to ask this new doctor this Friday. PK what do you think about this? Should I try to see an infections disease specialist like some I am reading suggests? This is to try an id the infectious agent or cause? This would explain why I get sick and have fevers a lot? Fevers suggest some type of infection from what I am reading.

Post Edited (twiggs) : 6/4/2014 9:11:28 AM (GMT-6)