Suggestions needed about slow decline and fairly constant flu like symptoms - without cold symptoms.

[WendyM]

I'm wondering if any of you knowledgable PWCs might be able to suggest what might be causing my deteriorating health. I was diagnosed with CFS 14years ago.

Since December last year Ive been slowly going down hill. Definitely not a crash but a slow decline. Major symptoms are feeling as tho I have the flu without any cold symptoms, and OI. The flu like feeling goes on for a couple of hours after I return to bed. Also aching muscles and of course, fatigue. All of which I'm used to, but previously got relief after resting. Resting not helping at all now. No longer getting a lift from hydroxB12 injections. Unable to leave the house and prefer to be in bed. In November last year I was able to take my disabled husband for a holiday - the best Ive been since being diagnosed.

Earlier investigations found high H2S although no bad gut bacteria, a stack of food allergies and leaky gut. Have not had any appetitive for years.

Blood test normal except for lymphocytes being below the normal range, and dropping 35% from July last year. No obvious sign of infection. I started a course of antibiotics (doxycillin) five days ago, but so far no improvement.

I have a good local GP - but she knows nothing about CFS. My CFS doctor is Don Lewis (a follower of Kenny D Ms regime) who is 1000 ks away in Melbourne and with whom Ive only ever had telephone consultations. He has done a lot of investigations and has been helpful, but limited. So decided it was time I turned to the wisdom of PR.

Something seems to have changed in my body, but I don't know what areas I need to have investigated or what I should look for. Any suggestions what I should be looking for, or suggested treatments to try?

Many thanks, Wendy

 

[xchocoholic]

Hi wendy,

I'm not up on lymphocytes but am familiar with leaky gut. I have some ideas that may help you. I've been treating leaky gut since 2005. Not saying I'm an expert but I've certainly been at this for awhile.

From my experience, my intolerances change on a regular basis. As do my allergic reactions. Have you looked at what foods you may be reacting to now ? I was great with vinegar until I wasn't. lol .. same goes for citrus.

Have you tried a mast cell protocal ? We have a section on this but basically you can use either medications or supplements. I found out the hard way that I needed these meds even tho I didn't necessarily consider my symptoms to be from allergies. Pain can be from mast cells producing (or is that just releasing ? ) prostaglandins. FWIW. Now that I'm on zyrtec (walgreens brand zyrtec for me) daily I can eat tomatoes without experiencing pain. kow

Experiementing with high oxalate foods while on mast cell meds failed tho. If you're not up on oxalates, just google it. I avoid the high ox foods only. These can be another source of pain for those of us with leaky gut. I have pelvic pain but not sure how many with leaky gut have this. Oxalate problems appear to be common for autistic children.

I don't see any connection between my fibro pain and oxalates but I've heard that others do. My fibro pain is from mast cells. Specifically I was responding to tomatoes and bacon.

I also need a lot of probiotics everyday. Not sure if that's an ongoing leaky gut area or not. I'm a celiac and because gluten is literally everywhere my gut isn't going to heal.

My OI responded totally to taking Walzyr at first but now isn't. I'm not sure why. It still helps somewhat so maybe I just need more mast cell meds. I need to take 5mg every few hours or it makes me sleepy and causes brain fog. Curently I take between 25 and 30 mg daily. I need to take this first thing in the morning.

hth ... X

 

[Sushi]

[quote="WendyM, post: 348214, member: 3541"...
I have a good local GP - but she knows nothing about CFS. My CFS doctor is Don Lewis (a follower of Kenny D Ms regime) who is 1000 ks away in Melbourne and with whom Ive only ever had telephone consultations. He has done a lot of investigations and has been helpful, but limited. So decided it was time I turned to the wisdom of PR.

Something seems to have changed in my body, but I don't know what areas I need to have investigated or what I should look for. Any suggestions what I should be looking for, or suggested treatments to try?

Many thanks, Wendy[/quote]

Hi Wendy,

Don Lewis give MAF 314 and has had good success with that. Can you contact him and see it he could get you on this? Others have found help with it. I inject GcMAF but I know the injectible it is hard to get in Australia.

Best wishes,
Sushi

 

[caledonia]

For me, the flu-like symptoms are caused by yeast. If I take an antifungal supplement, it keeps it at bay. I rotate between Caprylistat (caprylic acid), cat's claw, and GSE (grapefruit seed extract). Each supplement works for about a year, then symptoms come back and I have to switch it to the next supplement.

If it's going to work, you should notice relief within a few days.

 

[SOC]

For me, the flu-like symptoms that developed later in my illness journey were the result of reactivation of a number of viruses.... or to be more specific, those symptoms cleared up after I was successfully treated for HHV-6, EBV, C. pneumoniae, coxsackie, and parvo B19.

Also, I had a slow downward decline as I continued at the same activity level while I felt sicker and sicker. I had to cut back HUGELY before I stopped the downward spiral. HR monitoring helped me with that.

 

[Plum]

I'm wondering if any of you knowledgable PWCs might be able to suggest what might be causing my deteriorating health. I was diagnosed with CFS 14years ago.

Since December last year Ive been slowly going down hill. Definitely not a crash but a slow decline. Major symptoms are feeling as tho I have the flu without any cold symptoms, and OI. The flu like feeling goes on for a couple of hours after I return to bed. Also aching muscles and of course, fatigue. All of which I'm used to, but previously got relief after resting. Resting not helping at all now. No longer getting a lift from hydroxB12 injections. Unable to leave the house and prefer to be in bed. In November last year I was able to take my disabled husband for a holiday - the best Ive been since being diagnosed.

Earlier investigations found high H2S although no bad gut bacteria, a stack of food allergies and leaky gut. Have not had any appetitive for years.

Blood test normal except for lymphocytes being below the normal range, and dropping 35% from July last year. No obvious sign of infection. I started a course of antibiotics (doxycillin) five days ago, but so far no improvement.

I have a good local GP - but she knows nothing about CFS. My CFS doctor is Don Lewis (a follower of Kenny D Ms regime) who is 1000 ks away in Melbourne and with whom Ive only ever had telephone consultations. He has done a lot of investigations and has been helpful, but limited. So decided it was time I turned to the wisdom of PR.

Something seems to have changed in my body, but I don't know what areas I need to have investigated or what I should look for. Any suggestions what I should be looking for, or suggested treatments to try?

Many thanks, Wendy

Sorry to hear yr going downhill. I can only speak from my experience and add in a few things I've learnt along the way....
A little over a year ago I was doing ok for me. I was at about 40% functioning. And then I did a bit too much although I didn't realise it at the time and I was knocked for 6! I am still struggling to get back to 40%. But I have found that you have to listen to your body. You say you prefer to be in bed - so be in bed. Don't fight against yourself. Make sure yr eating really healthily when you do eat and give yourself a break.

I too currently suffer from aching muscles but just in my legs. It's a really tough one. I have found that heat helps me get to sleep - I have an electric blanket throw that goes over me and can help a lot. My Osteopath said the aching could be dehydration and after that mineral deficiency. You say you were on hydroxyB12 and I know from when I started the methylation protocol that the nice people on here made me aware of aching muscles etc being caused by potassium deficiency as healing occurs.

You say you didn't test for bad gut bacteria - I remember seeing a post on here before talking about how a lot of tests don't pick up all the bad guys. I myself tested for no bad guys but do find probiotics very helpful. I have also found taking several billion 3 to 4 times a day best.

Food allergies and leaky gut - you gotta get sorted. For me this seems a constant battle. I have found 50ml aloe vera every day with glutamine works well as does homemade bone broth. If yr struggling with multiple allergies I would look into the GAPS diet. It includes bone broth with every meal and cuts everything right back. I think it's a good place to start before progressing onto a more Paleo diet.

With leaky gut comes increases toxicity and an increased burden on yr liver. I am a huge fan of liver detox herbs as they work very well for me. I take NOW liver detoxifier and regenerator.

Have you thought of seeing a Naturopath? They often have a better view of CFS and treat the body as a whole.

 

[WendyM]

Thank you all for your suggestions. You have given me some good ideas to pursue.

Caledonia, I've ordered some caprylic acid today and will give it a try.

Soc said..." For me, the flu-like symptoms that developed later in my illness journey were the result of reactivation of a number of viruses.... or to be more specific, those symptoms cleared up after I was successfully treated for HHV-6, EBV, C. pneumoniae, coxsackie, and parvo B19."

I'll get retested for EBV and HV6. A few years ago EBV was inactive and HV6 indecisive. Never been tested for the others. What was used to treat your viruses? Also, what do you mean by HR monitoring? The only thing I can think of is heart rate, which doesn't seem to make sense.

Sushi, you've given me something to pursue too. I need to read up on MAF 314 and GcMAF.

Xchocoholic. I can't find anything on Walzyr. Can you give me more information? I'll read up on mast cells ... not something I know much about and there seems to be lots of good stuff on the forum.

Thanks again. helps a lot to have some ideas to pursue.

Wendy

 

[WendyM]

hello Plum,

It is so easy to overdo it without realising and crash. Done it quite a few times myself - although that doesn't seem to be what has happened this time.

I'm trying to listen to my body and do what it needs as much as possible. My husband is disabled and it is only recently that I'm trying to put my needs at least on a par with his..... which is an improvement on "when I get everything done for Jack, then I will get my own breakfast and meds, and then eventually get back to bed" way too late for my old body! Anyhow, he is going into respite care for a week on Monday, so that will allow me to just concentrate on myself.

I've ordered the liver detox herbs from iHerb. Will try the Aloe Vera too. I'm on the Paleo diet and will look into the GAPS diet ... there seems to be lots of info on the web.

Thank you for all your helpful comments. Hope you get back to your 40% functioning soon.

Wendy

 

[Plum]

Hi Wendy

It sounds like you have your hands full and I'm glad you'll be able to concentrate on yourself for a bit. I was curious if you were able to get help from a carer for your husband a few hours a day?

I don't know if this is helpful but I have found cooking up meals 1 week in advance makes my life easier. I mainly cook up chicken legs or chops all in one go. Saves a lot of time. Juicing is also a good way to get lots of nutrients quickly.

Bone broth gives yr gut the amino acids it needs to heal. Glutamine is meant to be the main one but I believe food sources are the best as yr body can take what it needs more easily. Bone broth is also meant to make whatever else you eat with it more digestible. You can make it on the hob or in a slow cooker.

And yes there is loads of info on GAPS diet online.

 

[xchocoholic]

Xchocoholic. I can't find anything on Walzyr. Can you give me more information? I'll read up on mast cells ... not something I know much about and there seems to be lots of good stuff on the forum.
Wendy

Walzyr is actually spelled Wal-zyr but when I googled walzyr, wal-zyr came up. It's just Walgreens brand zyrtec. I use it because I'm sensitive to the other brands of zyrtec. I have to be very careful with fillers.

Those just starting a mast cell protocal and want to try medications instead of supplements are told to start with either zyrtec, claritin or other non drowsy antihistamines. Then we're supposed to add in H2s like zantac or pepcid. I haven't pursued that like I was told to do because I've had a lot on my plate since January.

I see you're on the paleo diet. Dr. Myhill recommends that one to her patients with CFS. I've been on it since 2008 and am a firm believer that eating bioavailable foods (organic meats, fruits and veggies) is what people need to be eating. FWIW I just started playing around with eating grains and legumes in Jan because I had a bad reaction to Levafloxin and was just too tired to keep fresh food in the house. So far, I've gained about 20 lbs. I'm working on getting back on the paleo diet. I'm also now taking a glucose tablet made with DEX 4 for neuroglycopenia.

I'm not sure why I decided that the GAPS diet wasn't a good idea for me. From what I've seen the Paleo / low oxalate diet is what's commonly recommended for those with leaky gut. I read that LLMDs are now recommending it for lymies.

tc ... x

 

[WendyM]

@ Xchocoholic. Aah, now I understand about "Walzyr". I've tried Sudafed which is a pseudoephidrine, with some improvement. But you are not supposed to take it for more than a week [although Dr Lewis did not mention this]. I'll try Zyrtec and look into the mast cell protocol.

Pity the Paleo diet doesn't allow just a small amout of chocolate, isn't it??! lol

Plum. I do have help coming in for Jack 3 days a week through a partly government subsidized scheme. I've just recently been approved for the same scheme and my hours will probably mostly go to looking after Jack, which helps me. But if I don't improve, shopping and cooking will be necessary for me. This scheme also approves me for a nursing home - which horrified me. Must admit though, there have been times recently when being shut away from the world in a room to myself was rather appealing. But I don't think that is how it works. Can you imagine being "encouraged" by bossy nurses to go and do craft or listen to someone play the piano when all you want to do is lie down? That will definitely have to be postponed.

 

[Plum]

WendyM I'm glad you get help for Jack. I was worried you were coping on your own which is tough.

I used to visit nursing homes when I was in High School to chat to the people that stayed there. Your description made me smile. I can't imagine they're good places to stay. My Dad had to go into one just for a couple of nights and I had to phone him about something urgent. I called at 6pm and was told he was in bed! But they got him up for me. I asked him why he was in bed so early and he said they all went to bed early - they were given drugs to make them go to sleep! Unbelievable!!

We have a lot of online supermarkets in the UK - do you have something like that? I couldn't go to the shop's so it's great to have it delivered to my door. With cooking - I cook in bulk. Today there's chicken and veges in the oven for dinner for the next week. It makes my life much easier.

 

[WendyM]

Hello Plum,

We do have online supermarkets which are a wonderful help. I rarely go into a supermarket - find brain fog and OI make it just too difficult. I'm also very lucky where I live. It is a small suburb near the beach at the northern end of Sydney. We have three local shops and all are very helpful. An organic shop with veggies, meat and bread deliver to me. Another one is a cafe owned by a catering company and they have home made casserole type meals I can buy ... actually one of Jacks carers gets them each week. So I'm very lucky with shopping.

Lovely autumn weather here. Nice to sit on the verandah and do nothing. Hope your spring weather is good.

Wendy

 

[SickOfSickness]

I don't understand methylation well, but couldn't a slow decline be from toxins building and reaching a point where they are not getting removed by gluthionine? I think that can cause flu like symptoms too because of the viruses winning over the immune system?

Pity the Paleo diet doesn't allow just a small amout of chocolate, isn't it??! lol

It allows chocolate! The problem is most pre-made chocolate contains some bad (like too much sugar and a little preservatives). There are recipes. Paleo followers who like it make their own with organic cacao powder, grass-fed butter and/or coconut oil, a little honey, and sea salt to taste. Optionally with nuts, dried berries, or shredded coconut.

 

[Andrew]

I had a slow decline over a few months. A doctor gave me 10 days of Amoxicillin and that stopped the downward movement. But I didn't instantly revert back to my previous level. It took a long time.

 

[valentinelynx]

When I crashed 3 years ago and had to quit my new job for which I had moved to this town (Tucson), after being fairly functional for years, I went to a naturopath. The most remarkable thing he found was that my RBC (red blood cell) magnesium (indicative of whole body magnesium stores) was way way low. Apparently I either don't absorb it or waste it. In any case, I have to take large quantities (over 2 grams a day) to maintain my magnesium levels. It's worth testing, because low magnesium can contribute to muscle aches and weakness. I'm not back to where I was before the crash, but not nearly as bad as I was then, either. The test is for magnesium in the red blood cells, not a serum magnesium, which is likely to be normal even if your stores are low, as serum is tightly regulated by the body.