Long read - new here! We feel like we're wandering thru the Sahara Desert

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BDRoland
Regular Member


Date Joined Mar 2018
Total Posts : 22
   Posted 3/19/2018 10:58 AM (GMT -6)   
I've frequently read this forum and love the community , knowledge, support, and encouragement. I'm writing for my wife (of 5 1/2 years!), who unfortunately has been sick for close to a decade. We are looking for advice as we are not sure quite what to do at this point, as we have tried a lot. Here's the long story (skip down to the smiley faces for her recent issues/problems):

High school: healthy, played multiple sports, tons of energy, and happy. Had a car accident, got stitches (right in between her eyes essentially), sustained a concussion.. this is my best guess as to what started her declining health. It also was the first time she ever limited her activity and sun exposure (due to the facial stitches). Panic attacks or palpitations were the first sign of a problem, tired, lethargic, kidney infections, adrenal problems all followed. Started seeing a chiropractic after the accident for various pains and sluggish energy levels. No one got to the bottom of it or found a root problem. Managed to get by thru H.S. but was no longer the healthy child. Also started to have issues with food sensitivities- dairy was the first food to go!

College 2008-12 (proud Liberty Alum!) - active, but not a ton of energy. Sophomore year the wheels started to fall off - requiring more and more sleep, terrible (Terrible terrible!!!) migraines began. Food became more problematic (bye bye gluten!), and sleep worsened. She somehow managed to get thru her last two years - but she was quite a shell of her normal self. Symptoms weren't terrible- she just didn't have much energy, slept a lot, felt sluggish with some panic/stress episodes. She would literally sleep/rest all the time. I worked thru college and she slept thru college. She somehow managed to get thru her tough classes like organic chemistry, but she did it! Her hands manages to turn blue somehow (Raynouds?) And we did make a few chiro & urgent care trips for various pains. One visit to an ER but I honestly don't remember what it was for (migraine may be?). With all that being said she would trade to have her college health back in an instant (She feels much worse now).

Post college - Alexandra, Virginia days (2012-13): right before we got married she saw an integrative doctor named Johnny Smedlap (lol, I know better than to name Drs. That is an alias just to confirm). Who diagnosed her with Lyme (babesia and bart), Mycoplasma, and other 'confections' (I understand confections is not the correct medical term because they do not come from Lyme but you get my point). Prior to this new doc and treatment protocol she was working (two jobs actually, active, and getting by - not thriving but able to operate). He treated her with just more antibiotics than I knew existed. Cycle on and off, add this, take these 2 together, etc. Doxycycline, florinef, all kinds of stuff, steroids, etc. After we got married she moved to Virginia and was driving (she isn't now) and working. She deteriorated quickly, terrible heart symptoms began popping up (after started a new antibiotic she literally thought she was going to die - tightness, chest pressure and pain, racing heart). She began getting dizzy, headaches, more cardiac symptoms, and sleep became worse. Frequent ER or Urgent Care trips - usually would perform an EKG and it would be fine. Health got worse, and she had to quit working. We were frequently traveling 3 hrs 1 way to see her "integrative doctor", between that and her declining health I left my job and we moved back home closer to both of our families and the Doc.

King of Prussia, Pa days (2013-2017): the integrative doc did a food sensitivities test (culprits: dairy, gluten, cherries, potatoes) and she strictly avoided problematic foods. She also was put on a halter monitor (no findings), and had a cat scan of her head and neck. The integrative doc didn't last much longer as we began to worry about the number of medications she was taking coupled with her detoriating condition. We were referred by a friend to a health professional who used frequency to treat Lyme and we thought we're open to anything- he made small progress (nutramedix herbs, homeopathic remedies and some supplements) but thought that her case was too complex and referred her to his mentor (who had been doing this for decades). The mentor dug deeper into what was afflicting her - found Lyme, Epstein Barr, myco, parasites, and other fun organisms. She had targeted homeopathic remedies, nutramedix herbs and specific supplements that she tested deficient in. She made progress! For the first time in years my wife was improving! She began to walk, she began to jog, she began to be more active and happy. After about a year she even began to work again! She was not thriving but much better. She worked, drove herself, ate well, slept okay, and was able to exercise. Still had occasional headaches, dizziness, heart palps, but she was functional daggonit.

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For those of you who skipped the long version welcome back!

July of 2017 - working up to this point - still functional. Went on a family vacation, and the last day of the vacation she began to get a terrible migraine (I still remember the exact moment - as it seemed to change the trajectory of our lives. This was the beginning of her ultimate demise. I had stopped to get gas at a Wawa and she knew that she was getting a migraine). Migraine persisted for a week!! Nothing would help stop it, and it didn't help that her doctor was away. One of the first nights the migraine affected her vision suddenly one night and we called 911 paramedics checked her out and she was okay. She suffered thru it for a week (big mistake we know) and finally we went to the ER hoping for relief. They gave her reglan, decadron, and benadryl. One of those severely affected her head and mood. Made her feel terribly weird. But the migraine seemed to have been aborted and we were home to sleep at 4 am Sunday morning. Sunday night 6 pm, she began to feel off and her heart rate was increasing. 120-140-on the way to the ER it got up to 160-170. Some of the most terrifying moments of our lives. For some reason I decided to take her back to the same ER (I had called a nurse before her heart got too out of control and she said it sounded like an allergy/adverse reaction to something they had given her). The hospital proceeded to take their gosh darn time, implying that it was just a panic attack. I assured them that this was NOT a panic attack. They didn't ever last this long or cause her heart to go that high. Well unbeknowst to me, they didnt believe me and gave her haldol. These two ER visits in a 24 hr period were the most gripping, stressful time for my wife, she literally thought she was going to die, and we felt we had no options.

This put her into a cataclysmic decline. Mind you she worked for a week with the migraine. Now she was a complete wreck- so bad I had to take the week off. Body was absolutely racing, tremors, palpitations, dizzy, couldn't get out of bed, fearful, stressed, couldn't eat much, couldn't sleep. Was taking Ativan on top of benadryl DURING THE DAY just to try to slow the body down. It was a bad bad week. We suspected that the migraine and subsequent stressful ER trips caused major adrenal issues (it did- I don't remember what stage of adrenal dysfunction), but when her Doc returned she found major adrenal dysfunction and Hyperthyroidism.

Tons of symptoms at this point- dizzy, headaches, numbness, palpitations, stomach issues, sleeping issues, etc. Down down down she skid. By September she started to have insane palpitations and racing heart rate (140-150). She never returned to work after the migraine. She just never recovered. Migraine was in July we had moved to a new apartment the January before; I began suspecting the apartment had been an issue, because she was doing so well back to working for 2 years and then bam she hit a brick wall. First suspected mold, and then began to question the affect of High Tension Lower Lines right outside our apartment. Had the apartment tested for EMFs, measurement were off the charts and we were out. Moved in with my family in Dec of 17. By mid December I had to stop working because she was so bad, tons of flare ups and scary situations.

December- her heart began to get worse, getting up to walk to the bathroom was a workout and her heart rate would escalate (120-140), it worsened and it was now regularly 120 while resting. Tried magnesium, Valerian tea, lavender oil, etc. No relief. Christmas Day - couldn't take it anymore- went to the ER. They did an EKG, chest xray, blood tests - all looked normal. Gave her Atenolol (betablocker). Few days later followed up with a cardiologist (who we had seen before, and previously did a halter monitor, echo, and EKG in September of '17. All looked fine.) He switched her to Metoprolol and she's been on it since. 50 mg/day. We know that the beta-blocker won't heal the underlying condition and were very opposed to being on a heart medication but the symptoms got too severe (and we exhausted the tips/help from naturopath and a functional md). It HELPS, but her heart is still very symptomatic. Will race at times 110-130, still races when up and walking, feels very uncomfortable (POTS has been suggested - yes she super hydrates, takes in salts and electrolytes, has tried ramping up mag).

Current symptoms: chest pain/pressure (often says it feels like someone is sitting on her chest), palpitations, shortness of breath, dizziness, brain fog (trouble holding a conversation), sleep problems, abdominal pain & bloating/burping/flatulence, stomach gurgling all the way up to her throat feels it in her chest, Neuro problems (feeling faint, spaced out, black out feeling, jolts, tremors, shakiness), feels like her body is racing and trending towards a seizure, other times she feels so groggy/drugged she can't wake up (hello messed up sleep/wake cycle), feels like she can't breathe or has to force her body to breathe, PAIN - she is ALWAYS in pain: chest pain, muscle pain, neck pain, stomach cramps, headaches....
**Stress!! She cannot manage all of the above, she can't go a single day without calling her Doctor (usually multiple times), she is ALWAYS stressed out and in fear of her symptoms, wondering what's going to happen, etc. She just can't relax or get thru a day - what did you guys do to get thru mentally? She's always scared things will come undone, have a seizure, heart attack, etc. Her symptoms are always at the forefront of her mind (hence me not working for the last 3 months). This just isn't sustainable, she's not getting better, can't be alone, and we're burning (absolutely torching) thru our savings. She asks me to help her like 30x a day and I'm trying my best to do what the Doc are saying but nothing gives her relief from pain/stress.( I literally can't do it - every morning the first thing she says to me is can we call the doctor we can't even try to have a normal day. )

Unbearable pain - every day she feels she can't go another day. I just don't know how it got so bad (we've tried and tested CBD oil on her and it didn't agree with her - she's also SUPER sensitive to medicine/supplements - she gets tested for everything). We suspect that ammonia maybe the culprit for sensitivity to the world.

What we know are dealing with: Lyme (babesia, and borrelia), rocky mnt. spotted fever, multiple types of parasites (including iscarus,they think we've made progress here), Epstein barr, chemical sensitivities, electromagnetic radiation,very very low vit D (I don't remember the number on the blood test, but I could probably find it if it means anything), mold, high lactic acid, ammonia toxicity in spots - that's a newer discovery, high histamine levels, high evening cortisol, and hormonal disruptions (adrenals, thyroid has went between hyper and hypo).
- her body has just become a breeding ground for bacteria and viruses (lowered immune response > from migraine, stress, or the high EMFs?) And unable to effectively clear things - huge detox symptoms (lymphatic overload or kidney liver issues with detoxing?).

What we are trying: grounding mat, ozone, ionic detox foot baths, nutramedix herbs, results rna sprays, homeopathic remedies, tons of supplements, lymphatic drainage massage, Epsom salt + hydrogen peroxide baths, bentonite clay, dry brushing, clean eating*

*(organic fruits & juices, non dairy yogurt, cashew milk smoothies, nuts, occasional potatoes, rice, chicken/beef, but she rarely has an appetite for a heavy meal like that, rarely cares for meat).

Any suggestions/guidance on what she may be missing or what could provide any relief would be awesome! Is there anyone else that was ever like this? Couldn't be alone, significant other had to stop working, etc.

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2037
   Posted 3/19/2018 12:37 PM (GMT -6)   
Welcome to the forum! I'm terribly sorry for the horrific downward spiral of your wife's health and the ridiculous length of time she has suffered.

I'm not a doctor. I'm just going to tell you what I think. I know others are going to say babesia, but everything you wrote about sounds like much of what I have read on and experienced with bartonella. Get Stephen Buhner's bartonella book and read as much as you can find from experts, and you will see.

She needs effective treatment that takes into account her long depleted and weakened state and her histamine and other sensitivities. I personally believe bartonella, more than any of the other infections, causes the WORST sensitivities of all kinds (food, histamine, chemicals, mold, EMF, light, sound, smell, touch - you name it). Bartonella causes major CNS irritation. I believe this is where the sensitivities originate. This is also the reason bartonella causes the worst psych symptoms - fear, panic, anxiety, OCD, etc. Bartonella is also the infection that causes the most PAIN, at least according to some sources. Bartonella causes worse headaches up to migraine level and bone and body pain.

I highly recommend getting Buhner's books - all of them - on Lyme and coinfections. He explains better than anyone what each of these infections do in the body and how to treat the infections and the specific symptoms they cause. She needs a lot of help. If she doesn't tolerate antibiotics or doesn't want to do those at this point, then herbal treatment is a viable option. If you choose to use Buhner's protocol, I would highly recommend consulting with Buhner's partner, Julie McIntyre, or one of the other herbalists he recommends. Buhner says in his bartonella book that Julie has successful experience treating difficult cases.

Please keep coming back and asking about anything.

Post edit: I meant to add that I do not believe Nutramedix herbs do much for counfections. The only ones I have used were burbur and pinella. I used it daily for 6 months for herxes and they did nothing for me. I stopped wasting my money. Those herbs are 2-3x the cost of the herbs Buhner recommends. IMO, with Nutramedix, you're paying more for the patent than you are for the medicine, if it's effective at all. If she feels like it's actually helping something, that's different.

Post Edited (WalkingbyFaith) : 3/19/2018 11:44:53 AM (GMT-6)


acarined
Regular Member


Date Joined Jul 2015
Total Posts : 231
   Posted 3/19/2018 12:45 PM (GMT -6)   
The fruits could be causing bloating if there's candida. When I'm having a bad flare, I focus on things that I'm grateful for and avoid taking the 'what if' trains of thought as much as possible; here's a site with more suggestions. Last night, for instance, my body temperature dropped and I became prone to anxiety, it took a lot of effort not to think anxious thoughts (I watched TV to take my mind off it). When the anxiety faded my body temperature rose again and I had to remove a layer of clothing; had I been ruminating during that time it might have been enough to keep my sympathetic nervous system activated. There's the infections, the dysfunction in the HPA axis, and our state of mind — they all influence each other.

BDRoland
Regular Member


Date Joined Mar 2018
Total Posts : 22
   Posted 3/19/2018 1:18 PM (GMT -6)   
Thanks for the replies.

WalkingbyFaith - I will check out his books! Yes, antibiotics didn't seem to be tolerated well at all... the nutramedix herbs - I would agree > I guess they're a safety net but she can take loads of pinella/burber and not feel much relief. Thanks for the guidance and suggestion.

Acarined - yes, the diet has been tricky - couldn't tolerate meat or starchy carbs/beans.. so she had to eat very simple food. She eats mainly berries, bananas, green apples. The sugar is at least natural - on the flip side > if she doesn't consume much natural sugar from fruits or organic apple juice she has a lot of trouble keeping blood sugar up at normal levels.

Yes - she cannot seem to keep the sympathetic nervous system at bay. It is a daily, hourly, minute-by-minute struggle. I will check out your link!
+Lymes (bart and babesia), rocky mnt spotted fever, parasites, mold, Epstein Barr, EMF radiation, and other fun 'guests'
++Dairy free, gluten free, nutramedix herbs, results RNA Lyme protocol, homeopathics, ionic detox foot baths, Epsom&peroxide baths, bentonite clay, and a shelf full of supplements (magnesium, Gaba, melatonin, NAC, b complex, probiotic, nitric oxide, coq10, omegas and more)

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 386
   Posted 3/19/2018 2:27 PM (GMT -6)   
That sounds terrible. I was like that for a while. I honestly don't really know exactly how I got out of it, except that God helped me. I was extremely sick, and I always wanted someone with me 24/7. I also had a very low vit D, ammonia buildup, chemical sensitivities, etc. For me, switching doctors and treatments was what helped.

I agree that Buhner's herbs would be a good idea. Everyone is different, but I would say definitely to go through all the herbs one by one. If one of the herbs doesn't help, stop and try one of the other ones. They really helped me a lot.

I was surprised that artemesia annua (which Buhner doesn't use anymore) and boneset helped my symptoms the most. Sida actua also seemed to help a lot. I have a very bad case of bartonella (along with Lyme).

Did you treat for babesia? (with anti-malarials). I read that babesia can cause a lot of heart symptoms.

Garlic is great. It helps with a lot of things. I think I got rid of my mycoplasma with teasel, but I think I was on other herbs too. Oregano oil also helped some. It is hard on the stomach, though. Strangely, just about all supplements under the vitamin category made me feel a lot worse. Minerals were mostly okay though. Supplementing vitamin D never helped my levels go up any, and caused me other problems.

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 3/19/2018 2:47 PM (GMT -6)   
Hi and welcome to both of you,

Please tell your wife that she is not alone and that we are here for her and you.

I am so very sorry for what you both have been through and are still facing everyday.

There is hope to get better, dont ever give up, many members have gotten into remission.

We have success stories that are great to read and offer a ray of sunshine and hope when you need it.

I belive they have been added to our "New to Lyme"start here thread at the top of the page.


Many here also do herbals, rife, bee venom therapy, Hyper barric chamber, Iv therapy, ABX and more.

There are so many options for treatment and sometimes it just takes time and tinkering a bit to find what will help.

Well you both take care and I wish your wife the best of healing, Jo



Also for clearing the lymph system to help move toxins along:RED ROOT is a herbal tincture that helps. Just check for side effects and contradictions.Its recommended by Buhner.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 3/19/2018 2:51 PM (GMT -6)   
Welcome....

I'm so sorry for all the suffering (including yours for having to witness your dear wife in so much pain/discomfort and feel so helpless)...


My opinion is to find a very experienced LLMD - I think she needs someone to guide her treatment.


While my husband had to take a few nights off work when I was really bad a few years ago...I was not close to what your wife has experienced.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

CatLady18
Regular Member


Date Joined Oct 2017
Total Posts : 86
   Posted 3/21/2018 12:35 AM (GMT -6)   
BDRoland, I just wanted to say that I'm sorry your wife is struggling, but she is very lucky to have a partner like yourself. I am so impressed when folks post to support and understand their loved ones.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33909
   Posted 3/21/2018 1:53 AM (GMT -6)   
CatLady18 said...
BDRoland, I just wanted to say that I'm sorry your wife is struggling, but she is very lucky to have a partner like yourself. I am so impressed when folks post to support and understand their loved ones.


I know, right? She is a lucky woman to have him by her side.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sickofbeingsick00
New Member


Date Joined Oct 2017
Total Posts : 18
   Posted 3/21/2018 6:57 AM (GMT -6)   
I second that CatLady18 and Girlie...it impresses me as well and wish I had someone that invested in my health and getting better....Well done BDRoland..
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