Hoping for some direction.

[FayF]

I am new to this forum. I would like to thank all the wonderful people who unselfishly give their knowledge and time to try to help others. I admire you all so much!!

I would be so grateful for any input!! I realize you are not doctors, but I’ve been to 10 so far and 1 surgeon. I’m not even sure which one of these doctors to listen to. I’ve wanted to post sooner but didn’t know how to start..still don’t.

This morning I woke and could not pass urine. I felt a dizziness and light headedness. I went into panic mode. I’ve had little urine in the mornings until I walk around & then fine. Today it was worse. I’ve been out of sorts and had kidney pain. I am not on any meds. I’ve never taken antibiotics or other meds since I was a child.

Jan. 2021 a hematologist found my RF at 108. My complaint at that time was swelling of right hand sometimes lasting till night. I cut out all gluten and dairy. When I finally went to see a rheumatologist I was feeling fine. He only did the minimum tests, because I looked and felt fine. He did not do any vascular? tests. My CCP was over 300.

I did an ultrasound of hand. It showed prior inflammation. Rheumotologist told me we don’t need to do anything now.

I thought I had RA. I’ve also been very constipated. Everything started with digestive issues/spleen pain in May 2020. Now I think I might have scleroderma instead.

I went to another doctor from the list, he told me to increase my Vitamin D ( currently at 21) and gave me LDN 4.5. and told me to do an x-ray of my spine. My complaint at the time swelling of upper and lower spine. I did not take the LDN. PCP did not authorize xray.

I’m also under the care of a naturopath. Based on Genova stool test, I am not digesting food properly and I have leaky gut, no infections detected. I still have digestive issues. I’ve lost 65 lbs.

I’ve had many weird symptoms come and go aside from swelling now turning to pain in joints including knees. Maz suggested I see a Lyme literate doctor. I did a week ago. Based on my symptoms she prescribed the following: I haven’t taken anything yet.

LDN 1.5mg before bed
Plaquenil 200Mg
Minocycline generic 100mg daily

I’m afraid to take Plaquenil. Isn’t 100 mg daily too much to start? My results from lyme won’t be back for another 2 weeks. If I do have lyme can I still take minocycline until I find out? I will take the LDN tonight. I did not want to take it sooner without the antibiotic because I thought it would mask the disease. This will sound stupid, but If I do not take the Plaquenil, will I establish a bad relationship with this doctor? In June 2020 my then PCP told me she did not want to see me again until I had my gallbladder removed.

If someone can read between the lines and offer me some direction, I would be so grateful! Thank you! Thank you! Thank you!

Fay

[PhilC]

Hi Fay,

FayF wrote:

Based on my symptoms she prescribed the following: I haven’t taken anything yet.

LDN 1.5mg before bed
Plaquenil 200Mg
Minocycline generic 100mg daily

Is that 200 mg of Plaquenil once a day, or twice a day?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[FayF]

Hello Phil,
Thank you for replying. I looked again at my script & notes from Lyme doctor…

Plaquenil 200mg 2x/day (I’m suppose to get me eyes checked one month after starting)
Minocycline 100mg 2x/day every day (watch for sunburn)
LDN 1.5mg at bedtime to start, increasing weekly to a max. of 4.5 (I’m on 3rd day. Aside from slight headache, I think it’s too early to see any affects.)

Continue with probiotics from ND(Spaced from antibiotic)
Finish out GI treatment from ND.

Gi treatment from ND: (about a month in)
1.Ther-Biotic Factor 4 (Bifidobacterium Complex) Probiotic by Klaire Labs
2 cap(s)s once per day, for 4 months
2.Motility Activator by Integrative Therapeutics
3.Betaine Hcl Pepsin by Pure Encapsulations (I take this only if I eat meat/fish)
4.MegaMucosa Microbiome Labs 1 scoop/day
5.GI Microb-X by Designs for Health

6.GI Revive Powder by Designs for Health(I took this the first time the day before my urine output became super small and I had kidney pain) I didn’t take it a second time. It has 15 ingredients that seem amazing, but at least one of them might bother me or it was just a coincidence. My urine output is almost back to normal.

Bottom line is, I really want to start Minocycline. I have wanted this script since finding this wonderful foundation. Now that I have the script, I’m afraid of the herx. I’d like to start as Dr. Brown recommended the pulsed antibiotic Protocol. I would feel more comfortable to start at 50mg 1x/day on MWF. But since I have the 100mg prescription, should I do the 100mg 1x/day on
MWF? And how does Plaquenil fit in this equation? The doctor told me Plaquenil is for the RA treatment.

Do i initially take a baby aspirin 3 times a day? or an adult aspirin? Or can I take Advil to get the inflammation down? I’m mostly controlling the inflammation by food: gluten, processed, dairy, nightshades & sugar elimination. I cook with a lot of turmeric, & drink ginger and chamomile. Most of the time this works until it doesn’t.

Thank you for your time! and for reading this.
Fay

[FayF]

Hello,
Does anyone know of an AP doctor in Greece? I’ll be there for a few months and I will have time to invest in my health. I did a search but the posts are older. I will try contacting a member from the most resent post.

Has anyone experienced a herx from 1.5 LDN? Is this possible? Or am I just getting worse.

I am on my 4th dose. This morning I was feeling extreme pain in my fingers, shoulders, knees and in places I never had pain…wrists. My muscles felt like someone beat them with a bat, hard to walk, expand my chest and balance. It has gone away now. I will take the LDN again tonight.
Thank you,
Fay

[Linda L]

Fay, have your doctors made proper blood and urine tests? Please share the results. Start collecting copies of all your results. It is very important. Have you really lost 65 lbs? It is about 29 kg or it was misspelling?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[PhilC]

Hi Fay,

FayF wrote:

Has anyone experienced a herx from 1.5 LDN? Is this possible?

Technically, I don’t think it’s a herx, but what you’ve described is definitely possible because it has happened to other people. LDN makes some people worse, and we’re not really sure why. One possibility is that the LDN has enhanced your immune system, and your immune system has begun attacking a chronic infection. Another possibility is that the dose of LDN you are taking is too high for you, or that your starting dose is too high. Some doctors start patients on 0.5 mg or even 0.1 mg of naltrexone. They do that because some people are extra sensitive to naltrexone.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[FayF]

Hello Phil,

Thank you so much for replying. I had the same reaction to 1.5 LDN this morning. I emailed the Lyme doctor to suggest a smaller dose/ask her advise. Can this medicine be taken instead of the aspirin Dr. Brown prescribed early on to get the inflammation down so the minocycline can be more effective? LDN sounds like the best unknown medication that everyone should be on if it really works for an individual.

Thank you,
Fay

[FayF]

Hello Linda L,
No it is not a typo. My weight has stabilized. I’m a size 12 now. I’m still losing but not as quickly. May 2020: My issues started with silent heartburn. Food became a source of pain. Walking /jogging for 2 hours/day was a way to deal with my digestion. Fear of Covid kept me out of hospital/emergency. Pains were mostly left sided, internal swelling(spleen?) on left side with arm and shoulder pain involvement. My story is lengthy. So I will try to keep it short.

Aug 2020: I underwent a cholecystectomy. My doctor told me the gallbladder was a “great masquerader”even though I did not have gallbladder pain. Stones were dark/black. This helped with my initial pain when eating, but not for long. Looking back the antibiotics probably are what helped. Next I developed surgery symptoms- upper back pains & internal right sided pains. I could not recover from surgery. After surgery, I also occasionally felt a traveling liquid pain released causing flight or fight feeling one gets when escaping a near death car crash.

November 2020: I caught Covid. I had a very mild case,no fever while I isolated. I did however get very ill(exaggerated lupus like symptoms) for about 1 month after testing negative with plenty of antibodies. In December I started to think I had Covid induced lupus or long haul Covid. I also questioned the success of my surgery and considered getting a “melissa test” to rule out a metal allergy to surgery clips.

January 2020: The only doctor I could get in to see was a hematologist. I had a longstanding script in my files for low blood platelets that I always put on the back burner. He found the elevated RF. I was displaying swelling of right hand with the inability to hold a pencil even by evening. My new symptoms were right sided, right toe, right eye, upon waking numbness in arm & loss of feeling in right hand. Here I am now. So happy to have found RBF!

These tests were taken in Jan and March

ABNORMAL:
Rheumatoid Factor was (Jan)108, (March)now 106 NORM(<=14 IU/mL)
CCP ANTIBODIES IGG/IGA >300.0 NORM(<3.0 U/mL)
URINALYSIS WITH CULTURE REFLEX WBC Esterase 1+
WBC 2.92 NORM(4.00 – 13.00 10^3/uL)
Platelet Count 123 NORM(150 – 450 10^3/uL)
BUN/CREAT Ratio 27.0 NORM(10.0 – 20.0)
Total Iron Binding Capacity 267 NORM(298 – 536 µg/dL)
VITAMIN D, 25-HYDROXY 21.87
Thyroglobulin Antibody <1.0 NORM(0.0 – 0.9 IU/mL)

NORMAL:
Amylase 95 NORM(28 – 100 U/L)
Erythrocyte Sedimentation Rate 11 NORM(0 – 20 mm/hr)
ANA, DIRECT SCREEN Negative

(recently in menopause)
TSH W REFLEX TO FREE T4 1.160 NORM(0.270 – 4.200 mIU/L)
FSH 106.0 NORM(25.8-134.8 mIU/mL)
LH 67.530 NORM(7.7-58.5 mIU/mL)

Thank you for reading this!
Fay

[FayF]

Hello again,

I do want to add the following.

Even though I have a very supportive family, life before RBF was very LONELY. Sometimes I felt my pains were all in my head. I was embarrassed trying to describe what was wrong with me. When I discovered this foundation, I cried like a baby. Maz and BonnieLou have also been so supportive behind the scenes. Thank you to Dr. Brown first and so many other known & unknown heroes who lived their life so unselfishly! Dr. Brown will always be in my prayers. Thank you all so much for providing support in so many ways. Thank you to each and every one of you for saving so many lives!

Fay

[Maz]

Hi Faye,

This is just a fellow patient hunch, so pls only take it for what that is, but did anyone test you for H. Pylori? The digestive issues, plus GB stones, and low platelets seem like a mix of things that might go together?

Low Platelets Caused By Infectious Diseases

H. Pylori has been studied in relation to rheumatic diseases. Altho ITP can be a part of the Covid mix, if platelets and WBCs were low prior to your bout with Covid, would it be worthwhile to test for H. Pylori? It is also a spirochetal infection, like Lyme, and LLMDs are usually well-versed in testing for and treating it, as well as understanding the issues around testing. There are several tests and one may pick up what another test may not (breath, blood, and stool tests).

The elevated RF and anti-CCP are indicative of RA, however as your last Sed Rate was in normal range (didn’t they check CRP?), it’s worth re-running inflammatory markers at intervals to check for active inflammation , which is an indicator of disease activity. The auto-antibodies can be elevated as a post-Covid reactive state according to what I’ve read, and they still do not know if these auto-antibodies are protective or pathogenic, potentially triggering rheumatic disease in those genetically predisposed. Either way, I wouldn’t wait to start meds as the doc prescribed.

Regarding the urinary issues, I’m unsure of what your urine-analysis results mean and if they are normal or indicative of a UTI. Is there any chance you may be passing kidney stones? These can cause back/flank pain and block flow. Might be worth asking the doc who ran the test if it’s still occurring. Another idea is that there can sometimes be scar tissue buildup after GB removal, called sphincter of oddi dysfunction, that can result in similar symptoms as GB pain due to backflow of bile. This can be easily corrected.

Covid is a strange bug, for sure, and causing a wide array of long-hauler symptoms and weird autoimmune labs. Some very experienced LLMDs are suggesting the virus is immune-suppressive and that other latent infections may get reactivated, as a result. Shingles has been talked about in the media as a post-Covid phenomenon, but what about other infections, like Lyme, H. Pylori, mycoplasmas, chlamydias, etc?

Just a few random thoughts… If it’s any comfort, we have all been in your shoes in the early days, and as we experience occasional hiccups along the way. It’s unnerving, for sure, but you’ve found a place here where fellow patients really care and want to share personal experiences to support others. It goes without saying really to only ever take what resonates with you as none of us are medical professionals…just fellow rheumatic warriors.

[Linda L]

I have RA and my platelets used to be very high, more than 500 or even 600. It didn’t go down even during taking Mino. It started to be lower four years ago and it happened after I stopped taking Prednisone. Now every test shows less and it is 278. Is is definitely going down rapidly. In 2018 it was still 426.
It is so confusing. I have been told that infection, inflammatory diseases like arthritis can increase the platelet count. I have been told that if someone has iron deficiency anaemia /which I had – doctors!/ the platelet count increases. Now my iron looks better and my platelets go down. It looks that whatever was discovered many, many years ago in medicine is left as it is and no more research is done. The only research is worth researching which brings millions. Our doctors are also less and less educated. What for if they can check everything on internet?

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[FayF]

Hi Linda L.

Thank you for your reply. I am not an expert in anything medical, but on the bright side, your platelets might be decreasing to your body’s “normal” number since coming off the prednisone. 150 is still within the low normal. So your platelets might just be normalizing! Take good care!

FayF

[Linda L]

Fay, you have written that you have problems passing urine sometimes. Recently I spoke to a friend of mine and she said that she has such problems when she has too much salt in her meal. Check if it’s not the reason.

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

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