Tag Archives: Bartonella

What Has Improved In Nearly 3 Years Of Treatment

19 Dec

Confused-Man

What Has Improved In Nearly 3 Years Of Treatment

As the new year is getting closer I was trying to think of all of the medical issues with Lyme and all my other illnesses that has improved since treatment. To tell you the truth not much has changed or improved and some things got worse. I have tried oral, IV, injection antibiotics, herbal protocols, diets, holistic….. and the results were never any good.

In the past 3 years I think the only thing that made me feel well enough to walk around the block for 2 days was Mepron. But my Babesia is still alive and well. Other than that I spend everyday locked up in my house under blankets and hydrating with a lot of fluids.

What symptoms have improved?

  • Lost The Ability To Walk/ Spine: One of the scariest moments for me was last year when I woke up and went to get out of bed and could not walk. I would walk “like I had no spine” as the neuro told me. It took all my concentration to walk from my room to the couch. I bought a wheelchair and thought I would never walk again. I was due for spinal surgery when I found out the lyme was messing up my spine so surgery would not help. It took about 3-4 weeks but I started to get the feeling back in my lumbar and legs and was able to walk again. I am not safe by any means it can come back at any time but I am thankful I can walk again.
  • Facial electric shock: The electric shock feeling I described in a earlier blog post years ago has gone away. Every time I took my first bite of any food or drink I would get this painful electric shock from the bottom of my chin up to the top of my ears. I believe it was my lymph nodes in my face that were swollen and sensitive.
  • Epstein Barr Virus: I was diagnosed with this many times and positive on blood work at the ER. The doc said I had chronic EBV or Mono. After taking Byron White EBV formula I am now negative but not sure for how long.
  • Chronic Strep Throat: This one was bad and I felt like I had razor blades cutting my throat everyday for years on and off. It was very hard to swallow or eat spicy/acidic/salty foods. It would go away and come back weeks later. Knock on wood I haven’t had strep throat in about 8 months.
  • Mouth Sores: I would always have mouth sores inside my mouth and on my tongue. This may have been from the thrush/candida I had and maybe from the antibiotics but it has also gone away around the time the strep throat did.
  • Red Bumps On Forehead: One of the first things to go away during treatment was the hundreds of red dots on my forehead that made my forehead feel like sandpaper. We thought it was parasites and the Ivermectin finished them off but there was no solid answer of what caused it.
  • Ankle Pain From Bart: Bartonella used to be a lot worse and my ankles felt like they were split open with an axe. I would cry myself to sleep at night. After treating for Bart my ankle pain is now about a 5-6 on the pain scale. Much better.
  • Seizures/Turrets: I used to have small seizures and turrets twitches in my neck/head. Both of those have improved and I don’t twitch as much.
  • Candida/C-diff: Antibiotics and aggressive treatment gave me both of these which both were horrible. The candida turned into an external flesh eating monster and did a lot of damage I do not want to speak of or relive. That is why now I am not doing a lot of antibiotics anymore. Both have gone away but the candida is showing up on tests.

What Are My New Symptoms?

  • Body Rash: I broke out in a rash all over my body from my thighs to my upper torso. Not one doctor could tell me what it is or what caused it but after 7 months it is starting to go away. The rash was like chicken pox but with red bumps that looked like pimples.
  • New Coinfection Proto: My LLMD thinks for sure I have a new coinfection that was missed before. I forget the name we are still testing for it.

That’s about all my brain can think of or remember but not much has improved after 3 years and my lyme is still very active. So when the CDC says it can be cured in 2 weeks do not believe them. I’ve had lyme almost my whole life though so it will take forever before it goes into remission.

I hope all of you chronic illness warriors have a safe and merry Christmas. Keep fighting and never give up hope.

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Visit To New Secondary Lyme Doc LLND

2 Apr

Puzzled male shrugging wearing lab coat

 

Visit To New Lyme Doc LLND

Do you ever leave your doctor’s office feeling like you have accomplished nothing and wonder why you even used all your spoons for the day on the visit? That was this visit today. I left feeling like “here we go again”. The picture above looks just like how my doctors face looked. This is why I was hesitant to see anyone besides an LLMD.

My LLMD is pretty far away and always booked so I have been searching for a closer doctor who treats Lyme just for the bad days and a place to get refills easier. I found an LLND after hearing good things about him. He was trained under my current LLMD. This LLND also takes my Medicare so that was a huge plus. 80% of my bills will be reimbursed.

So….the doctor walks in and introduces himself and then asks me (Mr. No brains or memory) to tell him all about me and my medical history. Of course I have my mom there as always but he wants to know from me. I am sitting there struggling to find words or talk and forgetting dates. I finally told him “I have no idea what day or month it is so this is really hard”, he didn’t seem to care. I also forgot to take my pain meds for the day so I was squirming in my chair bitting my lip in pain.

He was taking notes and wanted very specific dates of for example; “what month/year did your IBS start”….etc. I can see how this is helpful info and he needs to know but between myself and my mom we had to guess on everything. Then if we were off by 3-4 months he would say “wait you just told me Dec of 2008 but this was Jan of 2009 so I am confused”. I wanted to say “just ballpark range it, I don’t know!!”

The point of this trip was to see why I have lost my ability to walk (which has improved slightly), if lyme is the cause of the issue, and also to get different pain meds such as the fentanyl patch and refill xanax. Well being a nature path he was unwilling to fill any prescriptions. He also said he’s only treated 6-8 patients with antibiotics for Lyme and he was not willing to help me with that he would just send me back to my LLMD.

His advice on the walking issue was to “see my primary doctor or neuro” …well duh but they do not believe in Lyme that’s why I came to you! His advice on getting my prescriptions was to “see my primary doctor”. I asked his advice on what supplements he recommends that would benefit me being so ill that I do not already tale on my long lost I handed him…. his response “why are you taking two forms of turmeric”. So basically no answer.  Thanks for nothing.

He wanted all new blood work for everything and didn’t really care that my LLMD said I have chronic lyme, babesia, bartonella he wants to have his own tests done. I almost felt like he was an IDSA doctor. I mean I know he believes me but he wants solid proof before he treats me with whatever meds (supplements) he says he can help get me “normal” again. His nurses said he “works miracles” and I have heard he does so that is the only reason I am trying him out.

My quality of life is poor and feeling like dying daily and never seeing the outside world is no way to live. When I tell the doctors how I live I know they think I am exaggerating but I am not. My day can be summed up in one sentence; I wake up, walk to the living room to lay in my chair to watch tv, eat dinner, and then go to bed and lay there until I fall sleep if I can…period.

The pros: The doctor did rule out any mold issues. He also said my herniated discs in my c-spine and back are most likely from lyme disease which confirmed what my LLMD told me. He ordered too many blood tests to write here or remember so there will be a ton of results in 3 weeks to go over. He did say he can help me with my thyroid.

So once again I left another doctor office feeling just as lost and confused as always. I hope he will find something solid in my blood work and he will at least try to help me instead of sending me back to my LLMD. He is the same guy I called 6 months ago for an appointment and he said I was “too complicated to treat”. I told him this time I just want to try his methods of treatment out if he could just give me an appointment but I can tell he doesn’t want to treat me.

Now all of the above sounds like a bad day but to me I look at the positive from the day. I was able to get out of the house, the clouds in the sky were beautiful and I got some fresh air. So it wasn’t a bad day at all. Took a shot of the car ride and sky and was able to edit the picture below. Enjoy the little things and always try to smile.

 

clouds sac

 

– Have a wonderful week and hugs to all of you in pain and feeling alone.

 

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What Lyme Looks Like: Photos Of Some Of My 2 Years Of Lyme Treatment

28 Mar

 

What Lyme Looks Like: Photos Of Some Of My 2 Years Of Lyme Treatment

This is what 2 years of Lyme treatment looks like for most with chronic lyme disease. This photo is only some of my meds, injections and a small portion of IV stuff. I couldn’t find the huge box of IV stuff. Plus early in my treatment I forgot to save my pill bottles. I always wanted to post photos of this so that is why I saved most just as a visual reference to what us Lymies go through and take to try and have even one “decent” day or quality of life.

By the way out of all of these meds only maybe 1 or 2 made me feel “okay” for a day or two enough to walk outside and smell the fresh air. Just being honest. I won’t give up hope though it took my aunt 8 years of antibiotics before she felt any relief and she’s only had lyme for 20 years to my 30 so I expect maybe 8-10 years?

 

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pills 1

pills 2

pills 3

P1000014

Lyme Video: Worldwide Lyme Protest – Australia 2013

21 Mar

Worldwide Lyme Protest – Australia 2013

Just some of the many Australians Suffering with Lyme disease but just like most doctors and US states, they do not believe Lyme exists there. Have a look.

Shared From: YouTube – AustLymeProtests

Where To Send A Tick For Testing

18 Mar

deer_tick_nj_3.13383824_std

 

A Tick Bit Me, Someone I Know Or My Pet Where Can I have It Tested?

I am often asked by people I meet “where can I send a tick I pulled off of myself to have it tested to see if it is a carrier for lyme disease or any other TBD“. I always tell them to send the tick dead or alive to IGeneX for testing. However I read an article HERE about a new test for only $40. After researching the web site for the other lab I read about I see various prices and testing which I will share below.

If you are scared and not sure whether you should have a tick tested that say bit your loved one I would recommend sending it in for a peace of mind and closure. You can never be too safe with ticks and I think paying the $40-$60 is worth it so later you are not paying $4000-$6000 a month for meds and watching them suffer from this horrible disease. I’m sure there are other places you can send the ticks and I know one place has slipped my mind but I don’t have the energy to search for it.

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ESU Wildlife DNA Laboratory

Contact Information

ESU Innovation Center
(570) 422-7892
(570) 422-3724 (Fax)
Director
ESU Wildlife DNA Laboratory

Jane Huffman
jhuffman@esu.edu
(570)422-7891
Web Site
 
 
 

Tick Testing Click Here

Lyme-Aid Kit Click Here

Tick Testing

The tick is tested for an infectious agent using a sensitive DNA based screening technique known as Polymerase Chain Reaction (PCR).

The tick can be submitted dead or alive.

The test result of the tick screen does not rule out or confirm the presence of the agent or exposure to the patient.

The result is intended to provide you and your physician or veterinarian with important information, when combined with other information, to help determine risk of exposure and subsequent clinical treatment and follow–up.

Diagnostic Panel I (DP01)

  • Disease: Lyme, Ehrlichiosis, Babesiosis, Bartonellosis
  • Agent: Borrelia burgdorferi, Anaplasma phagocytephilia, Babesia microti, Bartonella henselae
  • Fee: $175.00/Tick

Lyme

  • Disease: Lyme Disease
  • Agent: Borrelia burgdorferi
  • Fee: $75.00/Tick

EHRL

  • Disease: Ehrlichiosis
  • Agent: Anaplasma phagocytophilia
  • Fee: $75.00/Tick

BABE

  • Disease: Babesiosis
  • Agent: Babesia microti
  • Fee: $75.00/Tick

BART

  • Disease: Bartonellosis
  • Agent: Bartonella henselae
  • Fee: $75.00/Tick

Diagnostic Panel II (DP02)

  • Disease: Rocky Mountain Spotted Fever, Tularemia
  • Agent: Rickettsia rickettsii, Francisella tularensis
  • Fee: $100.00/Tick

RMSF

  • Disease: Rocky Mountain Spotted Fever
  • Agent: Rickettsia rickettsii
  • Fee: $75.00/Tick

TULA

  • Disease: Tularemia
  • Agent: Francisella tularensis
  • Fee: $75.00/Tick

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IGenX

Contact Information

IGeneX, Inc.
795 San Antonio Rd
Palo Alto, CA 94303
800/832-3200 Fax: 650/424-1196

Daryl Hall Lyme Disease Interview Pt 2 – Fox News

14 Feb

 

https://www.youtube.com/watch?feature=player_embedded&v=wwY26RIWSpU

 

Another interview with rock legend Daryl Hall about his Lyme disease and coinfections. I love when famous people can get the word out for us and spread awareness. Thank you Daryl.

 

-2013

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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