I am sharing my health story in the hopes that someone can offer assistance. I had stage 4 endometriosis for years before it was diagnosed. On top of that, I have had reactions in antibiotics, including fluoroquinolones and was given Lupron. Each drug destroyed more of my health. I am currently bedridden, in pain and unable to function. I have lost hearing in my right ear, have Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency, hypokalemia, electrolyte imbalances, IBS, MCS, Ocular migraines and recently, have been diagnosed with dysautonomia. My body feels like it is disintegrating. We believe that everything is related, that I have mitochondrial issues at the root of these illnesses, but to date, no one has been able to put the pieces together. With the help of my husband, I have put together my health history. We are looking for input.
Early Warning Signs
1985: late summer, I was hit by car while riding bicycle. I was banged up really bad and definitely had head injury.
1998: started feeling off, not sure yet at this point still very young
2001: birth of my first daughter. I developed severe preeclampsia and had an emergency C-section three days later. My daughter was 6 weeks early and spent two weeks in the intensive care unit.
2002-2003: I felt off at times and did go to GP on several occasions. I had pain shot to my back. I am not sure what it was but it took the pain away. I also kept saying just didn’t feel well. I felt off but nothing was found.
2005: the birth of our son and second C-section. I was on bed rest last three months of the pregnancy. I was given an antibiotic for some reason. I do not remember. I had a reaction to it and turned orange. The doctor gave me something else to counter the effects of the antibiotic and my color returned to normal. It was a normal birth.
2006-2007: I was still in pain. The pain moved to the abdominal area. I developed bowel issues, had and ovarian cyst. I saw gastrointestinal physician who did scans and found a thickening of the lining of uterus. He referred us back to the gynecologist who did D&C in 2007 and said I had very minuscule amount of endometriosis.
2008- 2009: still seeing OB for pelvic pain, also seeing multiple other doctors including a neurologist, internist, and surgeon. Everyone kept saying same thing: ‘Your fine. It’s in your head.” They wanted to put me on mood enhancers. I tried lorazepam and felt terrible on it, so I stopped after two weeks.
The Lupron Disaster
September 2009: I started doing Lupron injections from gynecologist. She was very forceful with me and stated “if you don’t do these injections I can’t help you.” She said it was the only way they could know if the pain was below the belly or above. I agreed reluctantly, but at that time still thought my doctors had their best interests in me. After the first injection, my doctor called at home on a Saturday to see how I was feeling. I responded I was already in pain, but it has now quadrupled and I feel like an old person. Every bone in my body hurt. I couldn’t believe the amount of pain I was in. She said I had to get all 6 injections if it were to be able to help me.
At that time, my husband because of work only went to a few of my appointments. I soon began to have him go with me because I felt I was getting the run around.
Hearing Loss Post-Lupron: Let’s Add Fluoroquinolones and Steroids to the Mix
2010: the last injection was in February. I began to lose my hair. I had memory loss, stabbing and taser sensations in head. I was still getting pains in abdomen area. In September, I went in for ear pain. The ENT said it looked like a scratch, so he gave me fluoroquinolone drops. I had also taken other fluoroquinolone antibiotics for yeast infections earlier in the year. In October, I had sudden sensorineural hearing loss in the right ear. Within an hour, I called my husband told him my hearing was acting weird. I went totally deaf in my right ear, 8 months after my last injection of Lupron. My local ENT immediately gave me a shot of cortisone (I was able to still walk and drive). It all went crazy when my ENT put me on a large dose of oral prednisone for 14 days. Everything in my body went nuts. I was rolling out of bed, holding on to the walls to help me walk. I totally lost my balance. The oral prednisone really did a number on my head. I had done genetic testing through 23andMe and our doctor upload the report to a reader called Opus23. It said that I should never take prednisone.
I went to Stanford Medical and saw top ENT and received three cortisone injections into the right ear drum. Had a 50/50 chance for recovery and for me it didn’t work. I left Stanford with them telling me they still don’t have all the answers yet when it comes to sudden hearing loss. They thought it was some sort of viral infection that attacked the ear drum and deafened the ear. After the hearing loss. I had three ER visits. This is when I first started having low potassium. I felt like I was about to pass out. I was still driving at this time, I didn’t know what to think.
2011 -2012: I began seeing a naturopathic physician. I also did a trip down to LA to the House Ear clinic to see some specialist regarding her hearing loss. They couldn’t help either. I left my current OB and started seeing the physician who was filling in. I ended up doing a partial hysterectomy with her after finding a growth at one of my numerous ER visits that year. I was still working and a full-time mommy, while dealing with massive pain in my lower abdomen and now starting to deal with multiple autoimmune diseases including: Sjögren’s syndrome, Hashimoto’s, adrenal insufficiency. In addition, a lot of my minerals and vitamins were off at that time. I suspect this was beginning of my dysautonomia. I also began seeing an endometriosis specialist at Stanford.
Was it Endometriosis All Along?
2013: On January 31st, I had laparoscopic surgery to clear the endometriosis. I had stage 4 endometriosis which took my appendix. The physician said my body was littered with endometriosis. He even checked up in my heart cavity to make sure no endometriosis had made its way up to the heart. Before the surgery, I was talking with the anesthesiologist and telling him about my hearing loss and my low potassium. That is when he stopped the surgery and I had to take a stress test. We left and went to Palo Alto heart center and did a stress test I fasted for 24 hours and then they had me go do a stress test on a treadmill on an empty stomach. I did it no problem and went back to the surgery center. That is when they did the laparoscopic surgery and found stage 4 endometriosis.
Also, I want to point out that we didn’t find out until much later that during the course of the endometriosis surgery, they had left surgical clips and suturing material in me. We discovered this at one of our many ER visits. The OR report from our doctor says nothing about these things being left inside of me. I believe this is an additional pain I have on top of the other complications in my abdomen area. Nothing like having a wad of surgical clips throughout my abdomen and suturing material left inside my already struggling body. We are trying to get these removed, but no surgeon will take my case.
Mitochondrial Damage and Autonomic Disintegration
April that year, I had another ER visit. I lost all bodily functions. My potassium was severely low. I would go to the ER in 2013 many more times.
2014: I had to stop working totally this year. I tried to come back and assist a friend of mine just being her loan officer assistant but the neurological pains and crazy foggy brain I was experiencing was just too much. Something that was so easy for me years earlier, I was now having trouble just doing basic loan officer task at this point. Strange neurological pains were becoming a normal. I stopped driving this year also. It was just getting to scary for me to continue. I continued to go to ER for multiple visits
2014- 2017: I went to the ER over 50 times for various reasons: heart pains, chest pains, shooting stabbing pains throughout my entire body. I almost always had low potassium. Over these years, we spent our life savings and pulled out a $100,000 from my husband’s 401k, which we spent on various treatment plans. We have traveled as far away to Philadelphia looking for answers. We even gutted our house when we were told at one time it must be mold that is killing me. We lived in a borrowed 5th wheel while my husband put our house back together. There have been numerous days where I felt I couldn’t go on one more minute. I felt like death was right around the corner.
In 2015 one of our doctors after reading my genetic report thought he found a breakthrough with a patient that had hypokalemia and Sjogren’s syndrome. He provided me a copy of the study they did on a girl with very similar symptoms to mine. He had our local compounding pharmacy mix a solution called Shohl’s. I took the solution after my doctor assured me I would be ok. Well, I tried it almost within in minutes I was convulsing and went into tachycardia. My husband called 911 ambulance took me to the ER. In route to hospital paramedic gave me nitroglycerin. I was monitored for several hours and eventually went home. During this time had been staying at my mother-in-law’s house for about 6 months because we weren’t sure at this point if something in our house was making me so sick. This was a very stressful time for me at this point we have no idea what’s going on and what’s causing this.
We did have some relief in 2017 when our local naturopathic doctor was able to get a new treatment called UBL or ultraviolet blood irradiation. I had about 6 months where I was feeling off, but having somewhat good days where I could semi-function. My viral count has been very high during these years, EBV, CMV, HHV6, etc., and possibly Lyme. If I push myself, I will crash for hours sometimes days until I start to get any strength back just to walk to the restroom.
Next, I went in for a completely different treatment called prolotherapy. I got one injection into my shoulder, and just like that my body reverted back to like I was before the UBL treatments. I was worse again. It was very strange my body reacted like that.
2016: I was diagnosed with dysautonomia by another specialist, an electrophysiologist cardiologist. I have several of the sub symptoms of dysautonomia including: postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope (NCS), dizziness, vertigo, fainting, fast, slow or irregular heartbeat, chest pain, low blood pressure, problems with gastrointestinal system, nausea, disturbances in visual field, weakness, breathing difficulties, mood swings, anxiety, fatigue and intolerance to exercise, migraines, disrupted sleep patterns, temperature regulation problems, concentration and memory problem, poor appetite and overactive sense, especially when exposed to noise and light. We also met with a dozen or so other specialists. None were able to help.
I have multiple tears in both hips worse on right side. Multiple torn areas in the pelvic floor also. Surgery is out of pocket and we have not been able to fly back and have surgery to repair those tears and hips yet as of 2019.
2018- 2019: I went to the ER only three times in 2018 and so far only three times in 2019. We try not to go because we know they never find much. I only go to be reassured that my vitals are still strong when I’m feeling at my worst. I have been denied disability. I had a neurocardiogenic seizure in the courtroom with judge and she still denied me. I have one last appeal that I am waiting on. I am not very hopeful that will go through. At this point, the dysautonomia, fibromyalgia/ chronic neurological pain and the low potassium are what are the hardest things for me to deal with. As of right now, we are concentrating on rebuilding my mitochondrial cells in hoping I can reverse some or most of the damage I think was a direct cause from the Lupron injections.
I was also on bio-identical progesterone creme from around 2012 to 2018. Then, in middle of 2018, my ND wanted me to try the bio-identical that went off the lunar moon cycle. It was a separate estrogen and progesterone creme in a plastic push-up type applicator. She said she was looking into it and thought it might help. Well, I tried it and had terrible side effects, I think most likely from the adding in the estrogen. After second month, I was having terrible stomach pains. I looked four months pregnant and was begging my husband to take me to the ER. The pain was worst at the part of the cycle where I took the estrogen only. I felt like she was going to die. In the past, I was always high in estrogen. I am not sure, but as soon as I introduced in that estrogen, it threw me out of whack terribly. I stopped that in November of 2018.
This is where I am now: in pain, unable to work or care for my children. My husband is my full-time caregiver. He takes care of our kids, shops cooks, does everything I used to do plus works his full-time job. I couldn’t do this without him. The doctors have run out answers. I believe it was the endometriosis all along, made infinitely worse by Lupron and the various rounds of antibiotics, including fluoroquinolones. The only way I can maintain my potassium levels is through huge daily doses. Otherwise, I slide into hypokalemia. We have a standing order at our local hospital to measure my potassium whenever I suspect it is low. We have sought treatment from dozens of specialists and spent our entire life savings and I am no better than I was 10 years ago. In fact, I am worse. Over the last 8 years, we have been supplementing with vitamins and minerals to try and repair the damage done to my mitochondria by the Lupron and the fluoroquinolones. Some things help and others do not. We are at wits end and do not know where to turn for help. Below is a list of supplements that I currently take.
- 600mg potassium,
- 1 1/4 grain Naturethroid
- 3 200mg potassium. Daily total 1200mg
- 1 Chewable Hydroxo B-12
- 1 COQ10 100MG
- 1 Biotin 10,000mcg chewable
- 1 Chromium picolinate 200mcg chewable
- 1 Desiccated adrenal from Standard process
- 1 magnesium malate 100mg
- 1 Thiamin 50mg
- 1 Mitocore – it is like a multiple vitamin
- 5 grams vitamin C, mixed with juice, plus I add Lugol’s iodine, colloidal silver, lymph drain and trace mineral mix.
- 3 200mg potassium again – daily total 1800mg
- B12 shot, a 100iu syringe
- 3 200mg potassium, daily total 2400mg
- 1 vitamin A 10.000iu
- 1 vitamin K 90mcg
- 1 Lugol’s iodine plus
- 1 nettle leaf cap 400mg
- 1 Monolaurin 600mg
- 2 L-lysine 1000mg
- 1 thiamin 50mg
- 1 magnesium malate 100mg
- 1 more Hydroxo B12
- 3 200mg potassium, daily total 3000mg
- 1 thiamin 50mg
- 1 milk thistle 150mg
- 2 L-lysine 1000mg
- 1 DHEA 25mg
- 1 magnolia bark 450mg
- 1 Digestive enzymes
- 1 Dr. Berg Hair formula.
- 1 L-carnitine 250mg
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Image: Maximum Speed of Raphael’s Madonna, Salvador Dali, 1954.
Posted originally on Aug 20, 2019.
Again, I am appalled. And to think that this monstrous list of symptoms is said to be “all in your head”, meaning that the illness is invented by the patient! Loss of cellular energy is the cause and megadose thiamine is the key. It is the commonest disease in America, affecting millions and sadly, a combination of genetic risk and lousy nutrition. A huge medical revision is required and that means that doctors need to remember what was told to them in medical school!!!!! Nothing happens in “any” machine without energy and that includes the human body. So where does cellular energy come from??
In a nutshell, your gut was not given a good start plus compounded with antibiotics that kill off everything including the good guys you were left depleted (to say the least.). You were also exposed to EBV the real cause of Endometriosis. Our uterus hardens to protect a fetus from EBV essentially encapsulating the virus in the hard tissue that forms around it. Certain classes of antibiotics can stir up the virus that were once dormant or in a controlled state and for me that was Macrobid which triggered Fibromyalgia. And Fibro is EBV in it’s most advanced stage. The virus can go on the move and destroy your thyroid and even hang out in your ear and cause issues that Dr. can’t really detect or understand. There is hope and you will heal by reading books by Anthony-William. I agree with the get off Vitamin A. Also avoid any Iron derived from animals (usually fish.). Only get a vegan source otherwise you are dosing your body with too many heavy metals and will likely get sicker. The virus steals your iron reserves that contribute to fatigue.
You should read “Mysteries Behind Chronic Illnesses”by Anthony William. In a nutshell, your gut was not given a good start plus compounded with antibiotics that kill off everything including the good guys you were left depleted (to say the least.). You were also exposed to EBV the real cause of Endometriosis. Our uterus hardens to protect a fetus from EBV essentially encapsulating the virus in the hard tissue that forms around it. Certain classes of antibiotics can stir up the virus that were once dormant or in a controlled state and for me that was Macrobid which triggered Fibromyalgia. And Fibro is EBV in it’s most advanced stage. The virus can go on the move and destroy your thyroid and even hang out in your ears and cause issues that Dr. can’t really detect or understand. There is hope and you will find the right protocol in his books (also check out Cleanse to Heal.). P.S I agree with the get off Vitamin A. Also avoid any Iron derived from animals (usually fish.). Only get a vegan source otherwise you are dosing your body with too many heavy metals and will likely get sicker. The virus steals your iron reserves that contribute to fatigue.
I’ve been dealing with symptoms like these and many more for the past 5 years.
In 2020, I had endometriosis surgery and they discovered stage 4 endometriosis with deep abdominal infiltrations. I am unable to tolerate any kind of hormonal preparation. Not even bio-identical progesterone.
But I am free of endometriosis symptoms after following a 6 month high dose allithiamine protocol to solve what I thought was “just” chronic B1 deficiency (beriberi).
(I’m saying “free of the symptoms” because endometriosis is shown to be a genetic disease more than just an estrogen dependent malfunction of the body).
I read Dr. Lonsdale’s book on thiamine deficiency and watched every video Elliot Overton posted on youtube about thiamine and oxalates.
Now, at 1200 mg/day allithiamine + B2 + B3 + magnesium + active B vitamin complex + multimineral without copper, my symptoms disappeared:
1. Only 3-4 days of menstruation, with minor bleeding.
Previously: 6-7 days, heavy bleading
2. No more cramps and have only minimal pain (level 3 pain) the first day.
Previously: terrible cramps, inhuman levels of pain.
3. No more leg pain and heaviness.
Previously: Since 2012, I started experiencing lots of pain and heaviness during the first day.
4. No more being bedridden for the first 2 days.
Previously: severe fatigue, barely walking around the house, like a very old woman in her 90s.
5. I can tolerate 5-10 days/month of bio-identical progesterone now.
6. SIBO, POTS, CFS/ME, food intolerances, gastroparesis, etc all gone too.
I discovered that even mild physical activity (walking 500 m in one day) makes ALL my symptoms come back. (February 2021)
I went to a neurologist with my whole story, including the effect of allithiamine, and I’m currently tested for a mitochondrial or metabolic inherited myopathy.
Hope this helps someone who is/was just as desperate as I was in 2020.
So if walking 500m brings it all back, then the cfs is not gone? I don’t understand.
Please have a look a chlorine dioxide. There are successful reports with endometriosis. You should have a orthomolecular therapist have a look at your supplementation. Your vitamin C should definitely be higher then 5 grams. Vitamin C reduces cellular oxidative stress effectively. Flox or FQAD has a lot to do with managing excessive oxidative stress. What is missing is the amino acids cystein and glycine. Both are necessary in the production of one of the most powerful antioxidants of our body, glutathione. Glutathione is severely depleted by FQAD.
I have been reading some of the older comments on this website and I wish to tell a story about a young woman that I treated for endometriosis. She was scheduled for surgery. I treated her nutritionally and she was able to cancel the surgery. Whether the primary cause is hypoxia, one of the basic problems in this disease is in the complex cascade that delivers important metabolites called prostaglandins. Diet requires two essential fatty acids from vegetable sources on a daily basis. One is called linoleic acid and the other is called linolenic. They both have to be treated by an enzyme called delta-6-desaturase. This enzyme requires several non-caloric nutrients and gives rise to an omega- 6 (GLA) and omega-3 (EPA) fatty acid cascades that together deliver a series of compounds that govern inflammatory and anti-inflammatory responses. When these cascades get out of balance they give rise to an inflammatory reaction causing endometriosis. Many people have heard of the omega-6 and omega-3 fatty acids and are often persuaded that the omega-3, sometimes referred to as fish oil, is “good for inflammation”. This is quite untrue. Both cascades have to be in balance in order to produce an appropriate reaction in the body and I gave my patient one part GLA and eight parts EPA as part of her nutritional program.
Truely amazing thank you for such important information.
This is like reading my own story, it is so similar. After 17 years and 21 doctors I finally found out that my issues were caused by Lupron and Adult Growth Hormone Deficiency was the one causing the worst symptoms. I don’t know if you were checked for this ( you need a glucagon or macrilen stimulation test for your pituitary, IGF-1 blood test will not diagnose AGHD). I am taking replacement growth hormone and it’s been a world of difference. Lupron is known to damage your HPA axis. I also got diagnosed with hypothyroidism, hypopititarism, Cushing’s disease, Interstitial Cystitis, Vulvadynia, PF dysfunction, osteoporosis. I am also double homo for MTHFR A, and was told my problems were mostly from mold and Lyme ( tested positive years ago and was treated for 2 years). What I found was most of my symptoms faded with GH replacement. I am still waiting on surgery to get the tumor off my pituitary (Cushing’s) and deal with the other issues. I also take tons of medications and supplements every day. I don’t know if GH deficiency could be part of your problem, but it might be worth looking into?
Apparently there are many women experiencing this cobweb of syndromes. I am one of them too. I have experienced a full-term stillbirth, HELLP Syndrome, Adenomyosis, Stage IV Deep Infiltrating Endometriosis with “kissing ovaries” (each ovary had 4” endometriomas that were adhered to each other and their weight pulled my uterus backwards so it was folded over on itself. Everything was adhered together and to my bowels and pelvic sidewalls. Endometriosis had penetrated the peritoneum and my ureters were encased with fibrosis. I had a total hysterectomy to remove my uterus, cervix, and Fallopian tubes, but that surgery left me feeling worse than before. I now suffer from POTS and Dysautonomia that has impaired my ability to work due to intense neuropathic pain in my legs that feels like I have been skinned alive; orthostatic intolerance that causes near-syncope, high heart rate, breathlessness, excessive sweating, and difficulty with concentration and memory that impairs my ability to accomplish tasks and communicate due to constant word searching; and gastrointestinal problems that are too debilitating, disturbing, and humiliating to write about. I also have Raynaud’s phenomenon and Livedo Reticularis. I have tested positive for Antiphospholipid antibodies (including Lupus Anticoagulant and anti-Cardiolipin), anti-Prothrombin, and anti-dsDNa. I have a hypothesis that Endometriosis is responsible for creating a chronic state of inflammation. Additionally, Endometriosis creates its own estrogen, which I suspect is causing the elevated levels of Antiphospholipid antibodies (which I believe are also responsible for my stillbirth.) I hypothesize that the Antiphospholipid antibodies and other elevated auto-antibodies are the root cause of the Dysautonomia and POTS symptoms by damaging the small blood vessels and nerves. The most upsetting part of this disease is not even the pain of the symptoms themselves. It is the emotional toll of being dismissed and discredited by doctor after doctor. Read the comments in any Facebook endometriosis group and you will realize just how many women are plagued by the same set of symptoms, and yet all of them have been made to feel that the problem is all in their head. It is abhorrent that so many doctors, including ob/gyn’s, are not aware of up-to-date information regarding endometriosis and continue to offer women ineffective treatments that may actually do more harm than good. This is a problem that affects women’s hearts, GI function, kidneys, lungs, and brains — this is not just a problem about fertility or pain with sex.
Stop taking vitamin A, among your other problems, you are poisoning yourself with that wretched stuff.. for info on this read grant genereux’s books and consult with dr. garrett smith in arizona (phone). also don’t take omega 3 and 6 supplements. PUFA’s will only make things worse. I’m sorry for everything you have been through, I just can’t imagine.
I also have Stage 4 Endometriosis. I recently had surgery for the second time in 2019, and at 38 had a subtotal hysterectomy due to adnomyosis and fibroids. I also only have one ovary left from surgery that I had at 19. However, it was only after this most recent surgery that I learned that there is a direct connection between gluten consumption and the growth of bad endometrial tissue. According to a study by the Saint Louis University School of Medicine, Department of Obstetrics and Gynecology and the Women’s Health Center for Endometriosis, women with the disease should NEVER eat gluten. The study includes a very comprehensive list of safe foods and even allows for one serving of gluten per week. Discovering that I could no longer have gluten was unsetting, as it’s in like 90 percent of processed foods. However, once you figure out what you can and can’t have it gets a lot easier. The study is called The Anti-Inflammatory and Elimination Diet for Adults Living with Endometriosis. Hope this helps you and others.
Have you found better health? This story is incredible and so very sad. If you are still looking for assistance I would say to turn to Morley Robbins. Have you had a Hair Mineral Analysis Test? Life does not need to be consumed with so many synthetic vitamins and such. Please contact me and I will help you get in contact with Morley Robbins. You can watch his video on the Root Cause Protocol here. https://therootcauseprotocol.com/
Dr. Ben Edwards is also a great resource and has Veritas Medical in Lubbuck TX. You are experiencing an iron overload in your system. My heart just hurts for you because it can be helped and you can gain your life back.
I have experienced so many of the same symptoms and medical experiences that you share here. I can’t imagine your suffering and my heart goes out to you. I have Stage IV deep infiltrating endometriosis (2 surgeries, both times got C. Diff after and was prescribed Metronidazole). Also have taken Ciprofloxacin after a different surgery and subsequent infection. I have a mess of a multi-nodular thyroid and taking levo- and lio- thyronine. I have weird neurological symptoms (buzzing, zapping, tingling, constant ringing in ears, balance issues)
Most interesting to me is your mention of the progesterone cream. I have had extreme problems from using progesterone cream resulting in trips to the ER multiple times and being tested for everything from MS to stroke to heart failure (severe fatigue, muscle weakness to the point of barely able to control my legs and could barely talk, chest pain, wheezing, extreme thirst). There’s so little information out there about the transdermal progesterone cream problem, but there is a little. It interferes with your renal electrolyte balance. And once the transdermal progesterone builds up in your fat, it slowly comes out for weeks, months or even years after.
I suspect some of the symptoms we share could be the result of a genetic/SNP/Endometriosis/progesterone/estrogen imbalance that has been exacerbated by toxicity from terrible pharmaceutical interventions. Keep researching. Keep your nutrition extremely high. You are not alone. You are not crazy.
I am also looking into thiamin supplementation after reading this site. That is new info to me and very helpful.
Wiley Protocol problems:
Reading this — sounds like my exact story.
Would like to contact you please. My email is firstname.lastname@example.org and I know that Lupron/Zoladex was the cause of my autonomic nervous system failure too. Before this I was healthy and working as an ambulance officer with no health issues other than period pain. Please get in contact. I believe we need a class action…
Sounds like fluoroquinilone damage to the T. Possibly given to you in your earlier days with surgery. Pull your medical records and check what was prescribed. Many support groups on Facebook will give you a lot of insight to all these issues. See Fluoroquinilone Toxicity Study Facebook site too for the direct science. I’m on year 6 of damage.
Thank you all for the comments you’ve posted. I have read them to my wife I’ve replied to most of you, but I’m not sure if your getting them because I don’t see the reply in the article after i post it. Hopefully you can see them.
There are major clues in this terrible exposure of the failure of Western Medicine. That is why I wrote a book entitled “Why I left Orthodox Medicine”. This post makes me cringe. This unfortunate patient has been accused of imagining her symptoms, a common way of “getting off the hook”.The two facts that stand out are 1. low potassium and 2. POTS . Both are known to be due to severe thiamine deficiency. The dose of thiamine is apparently 50 mg twice a day. I would have to guess that there is a genetically determlned absence of a thiamine transporter. I would suggest 2 things. Endometriosis is an inflammatory disease due to shortage of omega 6 and omega 3 fatty acids and she requires both GLA, i part to 8 parts EPA. She needs thiamine 100 mg I/V or big doses of Allithiamine by mouth, because it does not need transporters.With this long history she needs to be under the care of a knowledgeable physician who understands the refeeding syndrome, also known as paradox. You can find lots of information about this on Hormones Matter. It is said that “a little knowledge is a dangerous thing” . Call email@example.com for a knowledgeable physician
Thank You Dr Lonsdale for taking the time reading my wife’s story and replying to her. I have read yours and Chandlers book. She is now up to 200mg a day of Allithiamine capsules. I am taking her in weekly and for Meyers infusions. Were still waiting on our Dr to get the injectable B1 to add to the infusion. I know she cares for her healing but she is spread thin and i can only hope she has read your book that i loaned her. I need to definitely start giving her the Omegas again. Any brands you recommend? We have a standard order for all electrolyte at the local hospital that we can go 24hrs a day and get back the results in a couple hours to monitor her potassium closely. Since being on the B1 we’ve had a hard time keeping her potassium up even though I give her 3000mg a days plus multiple electrolyte drinks. Would love to talk to you on the phone one day if you.
have you tried mega dosing with Allithiamine and or Benfotiamine–the forms of B1 needed with dysautonomia–B1 Hcl does not get thru the BBB, and only very little of it is absorbed–I have different problems than you, but do have dysautonomia, with nerves greatly adversely affected–and the forms of B1 mentioned above have helped me immensely–
put “thiamine” into this site’s search engine for the info Drs Chandler Mars and Derrick Lonsdale have posted on this–
This was just what I was coming to recommend.
I was having severe dysautonomia. I’d tried thiamine before (MTHFR homogeneous mutation which has me severely deficient). But I’d had thiamine HCL or mononitrate, neither of which did anything for me. Then I read an article on allithiamine and taking it has made a wondrous difference for me.
I’ve been on it and benfotiamine for a year now. I’d been getting progressively worse over time. A year ago I thought I’d be bed bound by now. Instead, I’ve achieved a small resurgence of functioning.
In the US it is assumed that people don’t generally have nutritional deficiencies, and especially are not deficient unless they are alcoholics. (Something debatable at best but I won’t argue that here.) It turns out that some drugs cause thiamine deficiency.
I hesitated to say too much as I know a post like this generates a lot of advice, much of it useless. However, addressing thiamine deficiency has made an enormous difference for me. I’m taking 400 mg (200 benfotiamine and 200 allithiamine, additional allithiamine during the day if I feel lightheaded) and have just started a new protocol for taking big doses. Based on this info by Andrew Saul: https://youtu.be/M3fLHpA6CKQ
Thiamine is “the new kid on the block” as far as lots of articles out there in alternative medicine sources for how this deficiency effects people. I’ve been badly damaged by trusting Western Medicine doctors and meds, and I’m hopeful that this may help me regain some functioning. I also know we are different enough that what works for me may not work for others, but I’m hopeful.
Best wishes all.
Reading your story including the low potassium, dysautonomia, pain, mood issues, fibro, autoimmune issues, hypothyroidism, all sound like typical floxing to me – poisoning by fluoroquinolones. Sadly nothing consistently helps all of us. What aides one, harms another. FQs are in all non-organic meats, dairy, honey, farmed fish, farmed shellfish, etc. Please see myquinstory.info.
Sounds very similar to my own experience, however Lupron in 2004 and only child in 2008.
I have little faith in modern western medicine, but do take pain meds and hydrocortisone for the adrenal insufficiency (will have to check out desiccated adrenal).
What type of B12 is your injection?
Thyroid labs, how’s your Reverse T3 (and the Frees, but I have a hunch the Reverse is high)? Have you ever taken a higher dose of NDT or added Cytomel?
Is their synthetic folic acid in your diet or supplements?
Do you still vaccinate? Did you get the 2011 H1N1 flu shot?
I’m pretty sure the answer is yes, but have you gone on a GF, dairy free, organic diet…elimination diet?
Have you ever increased your magnesium or taken glycinate? Do you increase salt with POTS?
Do you have a copy of your genetic information? MTFHR, COMT, etc. I would put money on at least one variant in the methylation cycle.
Are your joints hypermobile?
I have also been looking into IV stem cell therapy in Cancun, vagus nerve compression due to cranio-cervical instability, zeolite heavy metal detox (like TRS), and hoping some of my symptoms will improve if I have decompression surgery for an Acquired Chiari Malformation (thanks to the connective tissue disorder Lupron gave me or made a genetic one symptomatic, my brain is falling out of my skull and crushing my spinal cord).
Dr. Marr’s article “Lupron, Estradiol and the Mitochondria: A Pathway to Adverse Reactions” was the catalyst to my research. I am 25-30% better than when I quit working in 2014. I’ve also had a lot of counseling to accept this is me now. I used to get my hopes up before every new “treatment” only to get depressed when it failed. For now, kudos to your husband, I have an amazing one myself and know it’s not easy on them either.
Hi Thank you for responding. The injectable b12 is Hydroxycobalamin, need to get a current Thyroid labs. No synthetic folic acid. NO on the vaccinating for flu shot. Never had a flu shot. Yes have tried GF dairy diet. Yes on taking more Magnessium, Malate and Glycinate. Yes on 23nme genetic testing. Yes positive MTHFR and COMT genes.
No on joints hyper mobile
This is Hank and I’m only testing that comments are possible without the captcha.