Feeling lousy & needing advice!

[Krys]

Great Plaines stool test sounds fabulous. I’ve been contemplating doing it for a long time now, I just wondered if there is any point doing it while on abx. Krys

[cavalier]

Krys – Hi i have wondered the same as to the timing for checking the stool test – obviously we are looking for the most optimal time in order to gain the most information.

best – Jill SD
( will try the signature line soon thanks)

[laurawm]

Hi Krys & Jill,

My instructions for the stool test were to be off all meds for three days prior to beginning collection and during the three day collection period. I told the doctor I was not comfortable with this as it would surely send me into a flare and he said that regardless of what I was taking, the test would show what was currently in my gut and if there was candida overgrowth. In the end I did the test after I had been off of sulfasalazine and minocycline for approx. a week, but I never did go off my supplements which include many natural antibiotics. I still do not have my test results back for this, but am hoping it will be helpful.

I also had from Great Plains Laboratory tests – IgG Food Allergy + C. albican, S cerevisiae, Organic Acid Test (this is such a comprehensive test – ended up showing many confirmations that I am having difficulty with candida and that I have low Vitamin C and low serotonin and norepinephrine as well as many other).

And from Doctor’s Data: Toxic & Essential Elements: Hair & Packed Red Blood Cells (Showed that I am low in iron and Chromium, Sodium, Potassium, Lithium)

I also had lab work showing my thyroid levels are low. This plus the Lyme test (waiting to hear back from the doctor – will ask the name of this test) are all the testing I have had done. It’s a lot, but it has been helpful to know what is going on throughout my system on many levels.

[Krys]

Thanks. Very impressive testing, Laura!
What is “Hair & Packed Red Blood Cells”?
Krys

[lepartain]

I, too, am feeling lousy and need encouragement. I have scleroderma and have been on the minocycline therapy for 3 months. I have no energy and ache all over and generally stay in bed all day. I’ve been going to a shopping mall close to home with my husband and walking around for about 50 minutes every day, but it is hard and I have to use my walker because of lightheadedness. Just wondering when I can expect to begin to feel better. I have to take pain meds in the afternoon and evening so I can get comfortable enough to sleep and I have to take sleep meds also.

[laurawm]

Hi Krys,

I did not know ahead of time what the packed red blood cell test was, but followed the doc’s rec to get the test as I decided that all this testing would be a one time expense and I really want/need to understand what is going on inside my body. The test showed my levels for: calcium, magnesium, potassium, phosphorus, copper, zinc, iron (low-taking supplement now), manganese, chromium (low-good for me to know since I had gestational diabetes with my first pregnancy and have been struggling with blood sugar off and on lately – Cr supplementation may help), selenium, boron (lower than I’d like), vandium (lower), molybdenum (lower), arsenic (high – doc said this is from eating lots of chicken that have arsenic in them – need to eat organic meat), cadmium, lead (higher than I’d like), mercury, and thallium.

Confusing day today – doctor e-mailed and said my stool test did not indicate systemic candida and that many of my other test results could be the result of candida antibodies in my system from past/recent infections, but not necessarily current. Weird. I know I have yeast issues as my tongue is white as if with thrush on a regular basis and I itch, not just in the expected areas, but on my skin as well. It will be good to get the Lyme results. I told the doctor that I was having some pain and swelling, and he told me to hold out and stay on schedule with the SAM peptide shots, meaning wait till next week to do another. He said he would expect the first shot to not last the full amount of time and that each time I should see better results that will last longer. I hope so. God bless.

[Maz]

@lepartain wrote:

I, too, am feeling lousy and need encouragement. I have scleroderma and have been on the minocycline therapy for 3 months. I have no energy and ache all over and generally stay in bed all day. I’ve been going to a shopping mall close to home with my husband and walking around for about 50 minutes every day, but it is hard and I have to use my walker because of lightheadedness. Just wondering when I can expect to begin to feel better. I have to take pain meds in the afternoon and evening so I can get comfortable enough to sleep and I have to take sleep meds also.

Lepartain, this might help…if you start a brand new discussion thread, others with SD will be able to find your post a little easier as it might just get buried in amongst posts with other rheumatic diseases. Maybe use a subject header that says something like, “Need SD support.” 😉

In the meantime, would you be able to share a bit more about your situation? E.g. Duration of disease, type of SD, symptoms and severity, minocycline dose, other supportive adjuncts you are using (e.g. Probiotics, NAC to prevent lung fibrosis). Are you detoxing? E.g. FIR sauna, detox supplements and/or regimens? Have you changed up your diet at all?

If you can add a signature line with this info in brief, it will help so you don’t have to repeat yourself very time you post, as the signature shows up automatically in every post. It also helps to generate responses from other posters who may recognize something or can share from their own experience when they see your dx and what you are doing AP-wise and supportive adjunct-wise. To do this, just go to the User Control Panel up top, click on Profile and then the Edit Signature tab.

Three months in is very early days and the first year can be quite unnerving, waiting for the SD freight train to slow down and for AP to kick in and begin symptom reversals. There is a lot one can do to support the therapy along the way and it’s great that you’re trying to keep active in spite of the disability (very important for circulation and to keep lymph moving), but there is so much more that can be done to speed things along. Also, have you considered trying IV clindamcyin?

I really hope others with SD will chime in for you and offer reassurance and some tips on what have helped them along the way. Hang in there!

[Krys]

Does your doc suspect the cause? It sounds like some major digestion /assimilation problem.

There was an excellent thread by Todd WI “Psoriasis Study: Bile Acids” viewtopic.php?f=1&t=7299 The 3rd link leads to a great article at the end of which there’s a link to an absolutely fabulous pdf: “Bile Acids make you live longer” http://www.nleducation.co.uk/wp-content/uploads/CAMoffer/BileAcidsSet.pdf I strongly urge you to read it. You may find some missing for you dots get connected!

Candida tests are not very reliable. But white tongue can also be a sign of poor digestion, obstructed bile ducts.
Itchy skin can be a symptom of a whole myriad of problems http://www.healthhype.com/causes-of-itchy-skin.html, including obstructed bile ducts.
I’m not saying that your assimilation problem is due to not enough bile but maybe it is worthwhile to investigate?
And I’m not saying that you do not have Candida. It is so difficult to eradicate and and is so persistent even after long courses of antifungals, that it well may be behind your symptoms. But nutrient deficiencies, food allergies/sensitivities + many more…can manifest as itchy skin, too.

Cat’s Claw has got quite potent effects against Candida. Are you taking it at its full dosage? Are you taking it with lemon or ACV?
It is fabulous that peptide injections are helping you!
Warm wishes, Krys

[Trudi]

@laurawm wrote:

Organic Acid Test (this is such a comprehensive test – ended up showing many confirmations that I am having difficulty with candida and that I have low Vitamin C and low serotonin and norepinephrine as well as many other).

Awhile back I came across this line by line explanation of the Organic Acid Test–
http://www.greatplainslaboratory.com/home/eng/Clinical%20Significance%20of%20the%20OAT.pdf
It was of huge help to me in understanding my results–
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[laurawm]

Hi Trudi – that is great info – I’ve been looking it over for awhile before responding here. I am low on seratonin and norephinephrine, so the doc has given me supplements for this. I had several markers that were in line with candida overgrowth, but it seems the doctor does not think it is necessarily so… I appreciate the link and will continue looking through it – was the test helpful for you?

Hey Krys – I had not thought/heard about obstructed bile ducts – this is interesting and I will definitely look into it! Thanks.

Jill – I found out the company who has done my Lyme test – I am not positive which test I had, but here is a link. The company is Neuroscience and my results came in today and the person I spoke with at the doctor’s office said she could not interpret the results, but she is sending me a copy, so I will update when I receive. I am nervous about this.

You have to click on Immunology and then on Infectious and then on Lyme
https://www.neurorelief.com/index.php?p=testing
I am also taking a supplement spray called 5-HTP from this company that is supposed to help increase my seratonin production.

Incidently, I have had very little joint pain today. I think(hope) I have been having some significant herxing from the monolaurin I began at the same time as the peptide shot and I am now getting some relief. I e-mailed that company today http://www.inspirednutrition.com/2/The_Ultimate_Monolaurin_-_An_INTERNAL_Bacterial_Defense_-_7_oz.html and they said that multiple studies show that monolaurin does not kill good bacteria because the good guys have a different cell membrane but that it does kill candida. This helps me feel like this is not responsible for my gut issues. I have cut back on the baicalin that the doctor offered as an alternative to minocycline and I believe it may be responsible for killing the good bacteria in a way that my body cannot handle, even with probiotics. The doctor said this was possible, so maybe – or I could have Crohns or IBS – I am really on one long road of search and discovery here, but it does seem like some kind of bug and leaky gut are involved.

[Trudi]

@laurawm wrote:

was the test helpful for you?

Absoutely! I had it done in July of 2010. Not until I found this pdf interpreting the results, did certain things click. Lyme is not allowing my body to absorb my nutrients properly, creating a cascade of problems. Interestingly, I was extremely high in ascorbic acid, even though I avoided any food or supplement with Vitamin C because it caused me to bleed from the rectum 😕 . I showed toxic for Vitamin D, even though my blood work came back low. My doctor said that the Vit D was obviously high in my tissue. Just little pieces of the puzzle. Healing is extremely slow for me 🙁 . but it could be worse 🙂 .
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[lepartain]

I was diagnosed with Scleroderma a few years ago by a dermatologist (deep tissue biopsy). The only help she could offer was steroids which caused a bad reaction, so I left and never went back. Doctors kept encouraging me to get under the care of a rheumatologist and I finally did. He, too, put me on steroids which I think really did a lot of damage to my immune system. I lost strength, energy and stamina and became bedridden. Then a friend told me about someone she knew who used to have Scleroderma, but was in total remission, so I gave her a call. She immediately recommended the book, “Scleroderma, the Proven Therapy That Can Save Your Life” and told me about her visit to the doctor in Boston and her minocycline therapy. I got and read the book and got into the Road Back website. Someone called me from that foundation and gave me the names of the two rheumatologists in Georgia that use this therapy. I immediately contacted the one closest to me and began the therapy – 100 mg. of Minocycline twice daily. I have to take pain meds in the late afternoon and evening because sharp, stabbing pains hit the skin on my feet and ankles very severely at night. I also have to take Lunesta and oftentimes Lorazepam to calm down because the pain makes me so irritable. I am 67 years old and am on Multaq for atrial fibrilation, Diovan for high blood pressure, Warfarin (blood thinner) to prevent stroke due to atrial fibrilation, Prevacid for stomach pain. One of these medications has increased my appetite. The skin on my feet and ankles hurt so badly – is so tender – it hurts to put oil or lotion on. Pulling clothes on and rubbing against my skin is most uncomfortable. I can’t get pedicures anymore because I can’t stand having my feet touched. I take Garden of Life Vitamin Code multi-vitamin, fish oil, calcium/magnesium and Snooze-In with melatonin to also help me sleep. Laying down is the only thing I want to do. I can’t stand for very long because of the pain in my feet and legs. I ache all over (Fybromyalgia), and that also gets worse in the late afternoon and evening. I hope this gives you a little more information.

[cavalier]

Lepa – Hi I would encourage you to make a new subject as well but in the meantime I would encourage also your asking or finding IF your current doc’s wont do it – a doc who will give you IV of Clindamycin once a week per month this boost really does give it a kick to the SD. Also detoxing along with AP & probiotics a antiinflammatory diet can also in a round about way help the vascular or at least help to lower general inflammation. Also address any leaky gut.

While 3 months in is early having had the disease for a bit I understand one being anxious to get feeling better treat SD as a agressive disease in looking into the above.

Best – Jill Systemic SD

[cavalier]

Thanks Laura! – Hope u get the results soon from your lyme test – like you still waiting for mine from the doc who ordered the IGNEX test.

Best – Jill SD

[Krys]

Hi Lepartain,
My heart goes out to you. You started intensely, like one should in SD, and the reaction is very strong. With severe condition and severe herx it can be very difficult!
I second Jill: please do start your own thread. You will receive more replies this way. Your post has probably gone unnoticed, as many people read the thread once or twice and do not open it any more when more posts are added.
Detox will help you greatly and as Jill also mentioned, so will changes in the diet, IV Clindamycin, taking generous amounts of probiotics, and also certain supplements. Once you start your own thread (you can just paste what you’ve written here), it will be easier for people to relate to your particular condition and to your need for gentle yet effective detoxification.

You can add signature line to your posts. This way you will not have to repeat diagnosis and abx, medication, supplements within each thread. It will help people relate to your condition better. In order to do it, click on “User Control Panel” above the thread, click on “Profile”, then on “Edit Signature”. Click on “Submit” once you are done.
Warm wishes, Krys

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