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EBV Coming Back?

23 Jan

symptoms

 

EBV Coming Back?

I have had the Epstein-Barr virus (EBV) for many years now. EBV was the cause of my chronic strep throat, mouth sores and other symptoms. For months it would feel like swallowing razor blades and it became difficult to eat or drink anything. I would get electric shocks to my face from the swollen glands on each side of my chin. Last month I finally tested negative for EBV and I did notice I hadn’t had mouth sores, a sore throat, strep throat…etc for a couple months after taking the Byron White EBV formula (can’t say if this was what helped get rid of it or just coincidence).

The past week my tongue is really sore and swollen and I felt like I stuck my tongue on a 9V battery there was a big shock that happened one day.  My throat has been sore for about a week also and I am starting to think my EBV is back. It was fun while it lasted to have a few less symptoms.

LLMD Search

The hunt for a new LLMD isn’t turning out so great. The one lady we found about an hour and a half from my house is only a neurologist that takes lyme patients for neuro issues. She does not help with the Lyme itself or any abx. But she is an option for all my neurological issues and I have had a few days recently where I started to lose the ability to walk again. I can tell because I look like a jelly fish when I walk on those days. My body kind of goes into convulsions while trying to walk and it takes all my concentration to take a step.

The only place I haven’t tried yet near my area is The Gordon Group which may be my only option left. I cannot handle car rides more than an hour I get too sick and have to sleep for days to recover.  I cannot afford flying out of state and it would probably make me sicker. I can see my first LLMD but they only wanted me on aggressive IV abx only even when I had c-diff and candida they kept me on it. My LLND was great but he stopped taking Medicare.

I can’t believe it’s so difficult to find a good non-lyme doctor who not only believes in lyme but they also show compassion. I received better care when I had a common cold back in the days than I do now with Lupus, FMS, CFS, Lyme, Thyroid, spinal issues….etc. What happened to the doctors who care? The same ones who cared about me before the invisible illnesses are now the ones who are rude a-holes to me. They are uneducated on many of my illnesses so they are quick to throw you out or tell you there is nothing they can do.

But I am staying positive and remaining hopeful. I will find someone who knows what they are doing. I know I will never be cured but I just want some relief and to feel a little more like my old self again. I have met some amazing new spoonie friends on Insta over the last year and they have become my family. It’s good to talk to others who have the same issues and know exactly what hell you are going through each day.

Pain Management

I will see my doctors at UCSF soon for something new. The Butrans are not helping much but only burning and itching. I was told Methadone was my next step but I will see what my options are then and update.

 

**Remember never give up. If you are feeling down on yourself and are ready to give up find someone who has is worse than you do and help them, it will make you feel better.

 

 

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Checking In

23 May

The moment you think of giving up think of the reason why you held on so long

 

Just Wanted To Check In

Nothing new to report from my end. I am still in a lot of pain daily as usual and no good days. It’s been an insomnia kind of month so no good sleep. Nothing to really complain about, I know many other worse than I am and people fighting to live. I am still off antibiotics and taking my advance lab lyme test maybe next week.

Hopefully the lyme test will be positive and give me a solid yes since i hear it is 80%+ accurate. I am taking many supplements still and my heart and POTS seemed to calm down. My heart rate and pulse have actually been normal and I haven’t fainted in a while. Not sure what I did differently.

I hope you all are having good days and smiling even through the pain. Don’t ever give up or let your illness define you. Keep you head up and fight on, better days are ahead although that may be hard to believe.

 

Advance Lab Info

501 Elmwood Avenue, Sharon Hill, PA 19079

Phone: (855) 238-4949 · Fax: (855) 238-4946

questions@advanced-lab.com

http://www.advanced-lab.com

 

 

 

 

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Thank You For Your Support

17 Apr

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Thank You For Your Support

Most days I do not feel well enough to talk and respond but I try to. My brain is so empty and mushy it is hard to respond and make sense or say what I want to. I just wanted to thank all of you for your support and kind words on my posts. They really do help me and make me smile.

I really wish all of you a healing and peaceful journey in your healing no matter what illness you have. I have friends in so many different support groups so I am familiar with many illnesses and have seen so many suffer or pass away. Most healthy people have no idea how much pain and suffering goes on with others but we get to see it and feel it first hand.

I know depression and sadness goes with suffering so I always try to encourage and inspire if I can. Just the smallest of things can really change a life or bring a smile to the face of someone who has been through so much. So remember to try and begin and end your day with a positive thought and no matter how depressed you are find a reason to smile.

Thank you all and best wishes in all of your lives. Things will get better so hang in there and keep fighting.

 

 

 

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Quick Update – Could Not Walk, Wheelchair Soon

23 Mar

invacare-wheelchair-1

 

Quick Update – Could Not Walk Wheelchair Soon

The last month has been one of the worst for me. I feel like what little progress I made in 2 years has relapsed. My spine and neuro symptoms are getting worse. I will be seeing a new LLNP/GP next week for more MRI’s on my spine and hip. Still a lot of severe pain all over and down my spine so I will be looking for something stronger than Dilaudid and Norco like maybe Fentanyl patches. I have already tried every pain killer known except for Tapentadol which seems just like what I already take. Tired of crying myself to sleep. Some of the pain is non-lyme old injuries.

Tonight I was trying to get up and walk and my brain and eyes were looking forward yet my body would not move or I would walk backwards. It was very strange to have my body and brain not on the same page. I could take steps but very short and my legs were like noodles. I started to slur my speech and talk very slow (which is not unusual). It just seems more frequent now like maybe my spinal stenosis is choking my spine finally, my neuro is worse from lyme or my old lower back injuries are doing damage.

For months now I use the walls and counter tops to hold me up as I walk. I have hyper POTS so I also faint or black out a lot. I am a “fall risk” and I feel a walker is not enough support so I would like a wheelchair. I have been doing my best to avoid a wheelchair but I think it’s time to get one for those bad days. I was already bedridden 2 years ago and could barely walk before starting treatment.

With so many medical issues (fibro, pots, lyme, lupus, spinal stenosis, c-spine herniated discs…etc) it is hard to say if this is 100% lyme related. I do believe that the lyme caused my herniated discs in my c-spine. I know a lot of my neuro issues like turrets twitches in my head, tremors, unsteady balance…are lyme and TBD related.

It’s scary to know that the rest of my life could be in a wheelchair especially if my stenosis and spine get worse but I am still at peace with all my illnesses and I will push on with a smile and continue to support others. It’s not the end of my life, it’s just a new beginning and new challenges. I want you to fight this disease with me and never let it define you or make you want to give up. Keep up the fight fellow warriors and hold your head up high.

 

– Hope you find a reason to smile each day. Take care for now….

 

 

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Back On Antibiotics – Herxing

26 Feb

antibiotic

 

Back On Antibiotics – Herxing

I couldn’t handle being off of antibiotics any longer. I wanted to give my body a rest after the candida scare and after the Picc and clotting. My PCP recommended taking a break also so I went with it but on my own. After (insert number of days here because I forget) I have been of antibiotics my symptoms were getting worse.

Here is some pretty solid proof that 10 days of antibiotics does not kill or “cure” chronic lyme disease and tick-borne diseases stupid IDSA/CDC. I have been on 2 years of aggressive treatment and I am nearly just as bad as when I started 2 years ago.  I would say I have progressed 5% – 10% at the most but now after stopping antibiotics I am going 2 steps back.

My neuro problems such as the turrets twitching in my head, tremors, vertigo and other issues seemed to calm down a lot better while on antibiotics. Now that I have been off I noticed they started to increase each day until recently when I had them all back full force. My head will nod on it’s own about 3-4 times (turrets twitch).

My tremors which were calm for the first time in 16 years are back and shakier than ever. My POTS and blood monitor reading is more tachy now and my reading today was 140/101 with 89 pulse and 96% oxygen. I was low with bradycardia last year and in the 50’s range. It is getting tough to walk again and I am more bedridden. The vertigo has increased (besides what mino did) and I run into walls no matter where I walk. I have to hold onto walls and objects to walk.

My brain fog and cognitive issues are also getting worse. I have no idea what day/month/year it is. I was starting to stutter daily which has never happened to me. Still have dyslexia. I cannot remember names, faces or words at all. I now just tell a story and say “that one thing” a lot. I already had bad memory short term and long term. Things were just getting worse.

So this week I started back on Suprax and Coartem. I will be back on oral Clindamycin and Minocycline soon. So far I have only herxed one time (which is as I write this). My head is splitting open, migraine and feeing very warm. But I had to get back on the antibiotics since I was in a lot more pain in my bones, muscles and body. My “stone man” was increasingly worse. I am having cold spots and neuropathy down my spine.

I have listed all of my symptoms on a previous post and there are 100’s so I won’t list them here but they are all still with me. I was hoping to go out for walks when Spring gets here but that is looking like it may not happen with this pain, vertigo and dizziness.

I will also be trying a Homeopathic treatment that should be coming in the mail real soon and I may post about it. I am also thinking about trying rifing again one day. Need to stop these bugs from having a party in my body.

I will try to update as much as I can but I haven’t had many “good” days. I hope all of my spoonie and Lymie friends are having better luck in your lyme healing journey. Keep up the fight and never ever give up life is too beautiful and there are many good days ahead. Take care for now friends.

 

– I will continue to spread Lyme awareness in Jeremiah’s name. He will be missed.

 

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Update: No Antibiotics, No Flu Vaccine, CFS, Cognitive Problems And A Cold

15 Jan

Man-Blowing-Nose

 

Update: No Antibiotics, No Flu Vaccine, CFS.. And A Cold

 

Primary Doctor Follow Up

I have now been off of antibiotics for over a month (I think lol) and I can’t say if I feel any worse or not. I know antibiotics did help me with a few issues and I am at least 5% better today than I was 2 years ago at my first LLMD appointment. Everyday I feel like complete crap so I can’t sit and tell you if stopping has made anything feel any different. All the symptoms are still there and I still just lay in my chair daily doing nothing at all. I did need a break so my body can heal and detox though.

I finally left the house this month to go to my follow up with my primary doctor and wouldn’t you know it I caught a cold. One of the reasons I never leave the house besides being too ill is also because I seem to catch every bug that is going around within minutes of being exposed to the public now.

During my follow up we discussed my high cholesterol and concluded it is just from genetics and runs in my family. She asked that I lose some weight, I weigh 200 lbs and I am 6 feet tall so it’s not like I am that much overweight.All of my STD, HIV and other stupid tests she ordered since she refuses to believe Lyme is chronic all came bag negative.

What was awkward is she asked me to strip down naked so she can do a physical exam on me. I was freezing and shivering the whole time. She made me lay down as she inspected my male parts for a few minutes then the awkward part happened…she asked me “do you still get erections”. I don’t know if it was bad timing or what.

So as I am naked and she is performing various tests she kept saying to me “you just have a bad case of chronic Fibromyalgia not Lyme”. Then she saw how my chest started turning red and rashy and she said “that’s weird”…. then on my back she saw weird red marks on my skin and said “hmm interesting that is odd”….then she noticed my stretch marks all over my body which are either Bartonella or Lupus and she said “wow those are very red and not normal hmmm”.

So at this point I am thinking she is changing her mind and maybe thinking I do have more than Fibromyalgia but not her final diagnoses was Fibromyalgia with possibilities of something else. She didn’t order any new blood tests and didn’t order a follow up so that tells me she is done looking for what else I could have. She did say the stretch marks and rashes were more Lupus than Fibro.

My primary doctor deal with a lot of very ill patients and most with HIV so I thought maybe she would understand I have more than just Fibromyalgia syndrome (FMS). I showed her all of my symptoms on a detailed list which she just set down and left in the room. On that list it shows how many of my symptoms are not Fibromyalgia related but they are 100% Lyme, Babesia and Bartonella related.

I asked the doctor if she thought I had any kind of immune deficiency and should I be tested for it and she replied “no”.  She told me Mycoplasma and C. Pneumoniae are both nothing to worry about. She didn’t seem too interested in my double MTHFR mutation. On the positive side everything was free since insurance covers all non-lyme related appointments.

So she put me back on Lyrica again. I am currently battling with my insurance to get it covered again. Nothing like battling to get every lyme med covered and Fibro meds too.

 

The Flu Vaccine

I used to get the flu vaccine annually for the past 2-3 years before I became disabled and I rarely would get the flu. Before the flu shots I used to get the flu at least 2-3 times a year. I would get bronchitis, strep throat, the flu, colds and other issues all in the same year and more than a normal healthy person.

Since being disabled with Lyme, Fibro, CFS…etc I was told by my LLMD not to get the flu vaccine. So for the past 3-4 years I have avoided the flu shot. I never leave my house so I am never around the public so I know that helps me a lot. I have visitors sometimes and they can bring the bugs into my house.

This year is supposed to be one of the worst flu seasons so I am keeping my fingers crossed. As you may or may not know with chronic Lyme we feel like we have a bad flu everyday so by getting the flu it will be 10 times worse.

Having a cold already makes me feel worse. The cold isn’t really nothing I cannot handle but it’s more annoying than anything on top of all the Lyme symptoms and pain. Last year I had a cold that lasted at least 2-3 months along with strep throat. It just didn’t seem to want to go away thanks to my immune system.

I see people on social media saying how they have a cold or flu and they say they are “dying”, if they only knew what chronically ill people go through. I want to tell them “imagine what you feel like right now with your flu and add more symptoms and pain and the knowing you will feel like that everyday for possibly the rest of your life”.

 

Cognitive Problems and CFS

My cognitive problems have been even worse. I am very forgetful, cannot find words or names…the usual. I find it very hard to follow my shows like NCIS or to hold a conversation with my parents. I will make notes and set alarms to do things and I still forget to do them.

The cognitive problems have been at their worst for about 4 years now. I will say the severe brain pressure and very loud buzzing/ringing sounds are a little better though. But now it is more like I have the brain of a 90 year old. I never have any idea what day it is or what month and time seems to be flying by. I still thought it was Thanksgiving coming when it was Christmas.

I have forgotten names of most of my support group friends and always forget to contact them. I will just make up word because I get tired of trying to think of the real word. My latest thing is calling everything a “washing machine” when they are far from a real washing machine. No idea why that is the only word that comes to mind.

My CFS has been really bad. For the last 15 plus years I had more insomnia days than CFS days. Last year I was sleeping maybe 30 minutes a day and up awake for 2-3 days before crashing and sleeping finally then repeat. But so far the last few months have been really hard for me to keep my eyes open and my already low energy is at a zero.

I will be watching TV and fall asleep then wake up to rewind the show and then fall asleep again and again even after sleeping for 12-14 hours. I have been skipping taking a daily shower because when I go to take a shower I fall onto my bed and can’t get up and end up falling asleep. I am the type that has to have my daily shower or my skin will get rashes. I will be playing a video game and just dose off during the action in the game.

A normal person may get 8-9 hours of sleep but I used to average 2-4 hours of sleep from age 18 until just before I became disabled at age 33 in 2009. I worked jobs where I had to be up very early and got home late. I could sleep 2 hours and feel fine and never be tired. So sleeping 8 to 14 hours is very rare for me and being exhausted after that much sleep is even more rare. I don’t know if I like being awake for days with insomnia better or dozing off every second and having no energy with CFS better.

I have also been having more out-of-body type experiences and sleep paralysis. The other night I was half-awake and I swear I felt like my body and arms were going right through my bed like I was on a cloud (this was on no pills/drugs). Just some weird stuff going on.

 

New Year

I hope all of you are finding some healing on your journey and are finding some peace, happiness and love. In the past few months I have seen some people go into remission with their Lyme so there is always hope. I know the cold weather makes all of us fellow Lyme, Fibro and CFS sufferers even worse so stay warm and get your rest. Have a much better new year.

 

 

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Taking A Break – Latest Blood Work Results

15 Dec

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Taking A Break

 

My Latest Blood Work Results

After my last blood results a couple of months ago it was thought for the second maybe the third time in my life I definitely have Lupus. Like I have said before it runs in the family and one doctor will say you have yet another will say you do not. My rheum and LLMD thought I have it.

My new primary doctor (who I am not a fan of) thought I was so partier who was up to no good I guess although I told her I have been bed bound for the past 3-4 years and I don’t do anything. She tested me for Hep C, HIV, Syphilis and some other STDs. I was also tested for Lupus, Lyme, Vit D, Thyroid, cholesterol and a Complete blood panel.

 

My results:

Lupus – Negative! (was positive/ high ANAs last month)

HIV, HEP C, Syphilis, STDs – Negative

Western Blot #2 – Negative on all bands (was INT on bands last test)

Vitamin D – Borderline low/deficient (I took 50,000 IU already and now 6,000 IU per day for 3-4 years)

Thyroid – Borderline low (take levoxyl daily)

Cholesterol – High on everything (I eat/drink healthy, don’t smoke, don’t drink…etc)

 

I am told that my double C677T MTHFR mutation can cause bad cholesterol which makes sense to me because it’s not like I’m overweight and eat fast food all the time. I eat maybe 2 meals per day and usually chicken and veggies and I drink either tea or water. So it was a shock to see my cholesterol so high. It also runs in the family (genetics).

My Western Blot is going to piss me off because my PCP will say to me “SEE I TOLD YOU LYME IS NOT CHRONIC AND YOU DON’T HAVE IT”. Then I will have to explain how inaccurate the Western Blot is and about false negatives all over again like I have done time and time again with PCPs. I already explained to her all of my weird symptoms that only fit Lyme disease and conifections but she didn’t seem to believe me. She kind of gave me the “quit being a baby look”.

I have nearly exhausted all my primary doctor (PCP) choices who take my insurance in my area and I don’t drive so I need to stay near by. Plus this doctor is at a well known medical center which I like or else I would keep looking for a new doc. But after not finding a good doctor over and over and over you just sort of give up. This doctor on her web site said she “deals with Lyme” yet she knows nothing about it.

So my blood work once again had some good and bad in it. But nothing will get me down during the Holidays, I love Christmas and I plan on making some deserving people happy with my gifts. The Holidays are about being close to those you love and spending time together and not about the presents but I just like to spoil my little buddy.

 

Antibiotic Break

I am taking a break from antibiotic at this time. I did antibiotics, injections (IV recently) hard and heavy for 2 years straight and I am showing no progress. I think it is time to let my body and organs rest. I am taking supplements and focusing on my immune system now.  I never have any good days and I never leave my house (literally). At this point I am lost and trust no doctors and I feel I need to just enjoy football and not have to worry about an IV in my arm.

 

My heart goes out to all the children and families in the shooting today. So sad.

 

-I wish you all a safe and happy Holiday.

 

 

 

 

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