Tag Archives: Late Stage Lyme disease

Thank You! Wormser is OUT!! 

10 Dec


Thank you to all who signed the petition and got Wormser out. This guy has been an extra pain to the Lyme community for years. As you know I’ve been on antibiotics for 6+ years and holistic, homeo, naturopath, herbal, western medicine, rife….etc and my last Lyme test came back “very active” and positive after all those years of antibiotics yet they claim 10 days of antibiotics and you should be “cured” although Lyme could possibly go into remission not cured. Most don’t get their Lyme into remission and have late stage Lyme or chronic Lyme disease and nothing can stop it or make us feel any better. It’s not “daily aches and pains” as “Doctor” Wormser says! I’m sure those of us suffering know the huge differences in daily pains and the hell we go through. 

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Ashley Olsen Battling Late Stage Lyme Disease

8 May

 

Not feeling well so I don’t have energy for a post but wanted to share that now Ashley Olsen has come out about her battle with Lyme and how she “thought she was dying”. One Article actually wrote the truth that late stage Lyme is “incurable”. Usually they write that with 2 weeks of antibiotics you are “cured” of Lyme which is a false statement. Latest stage Lyme disease is horrible and hard to treat, the Lyme is resistant to all medication on most lymies (like myself) so we take maintenance doses of meds to keep Lyme at bay. Most lymies have early stage yet assume they have late stage and are not sure the differences. Early stage if caught early can be easier to treat since the Lyme may not be in cyst or biofilm form. I hope Ashley will fight along with us all and the truth keeps surfacing. I’m rambling because I don’t feel well after tinidazole  which is a cyst buster. Have a great week lymies. Maybe Ashley and I can be friends or date lol. Getting my IVIG Wednesday. 

Quick Update – Could Not Walk, Wheelchair Soon

23 Mar

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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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Sore Throat, Arthritis And CFS

30 Aug

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Sore Throat, Arthritis And CFS

I woke up one day last week with my usual sore throat. This isn’t the chronic strep throat I get but more like a regular sore throat. This time the pain is only on the left side of my throat and down deep to about where my throat meets my collar bone. I can feel the pain also going into my left ear. Many years ago when I was healthy I would probably have seen a doctor about this or worried but this happens so frequently and it goes away on its own. I believe it is just a common Lyme symptom.

We had two days of cooler weather this week. The weather has been averaging in the 100’s range and each week it can be anywhere from the mid 90’s up to 108 degrees. For two days the weather was cloudy with some sprinkles and in the 70’s. Just this small weather change and I could feel it coming.

My arthritis was acting up so I knew the cold was coming. One night it was pretty cool around 40-50 degrees and a cold wind blowing in my window. I could barely walk my knees were so stiff. When the cold hits me my body gets stiff as a board and my joints refuse to bend. The snow is beautiful and I always wanted to live in a city that gets light snow but that kind of cold makes my arthritis hurt worse. It is a constant, nagging and severe pain.

I remember growing up and thinking that all kids, teens and young adults felt the same pains I did. I had no idea I was so sick since doctors said I was healthy. I would wake up in my early 20’s and feel as if I had been hit by a car and thought maybe I worked too hard at my job. I thought to myself “man if I am in this much pain now just think how I will feel in my 90’s”. Well now I know I have the body of a 90 year old even though I’m only 37 (I think).

I always thought my pains were common and that maybe my body was slower to heal from a hard days work or partying. I never really took time to think that I never had a day without pain even when I spend a lazy day doing nothing. It took until I was about 30 years old before one doctor (who was just filling in for my regular doctor) said “hey you have arthritis, why does a person your age have arthritis”. My regular doctor came back and said “I don’t think you have arthritis”.

The five years later that same doctor who had diagnosed me with arthritis was now my regular doctor. He then diagnosed me with hypothyroidism, Fibromyalgia and then spinal stenosis. Once again he said to me “why does a person so young have spinal stenosis which is usually found in my patients 60 and older”. I remember hearing this same thing in 1999 when I had elderly pneumonia when a doctor said “why does a 21 year old have elderly pneumonia, this is the pneumonia that usually takes the life of the elderly…very odd”.

It amazes me that not one doctor ever thought to look into the pattern of me having so many rare and elderly type medical issues for nearly all my life. It was always “you just have IBS you will be fine” or “you just have carpal tunnel that is nothing big” but why did nobody say “why do you have a new symptom or medical issues every other month”. I cannot even name the rare medical issues I had as a kid but that had long names and I haven’t heard of them since.

This month has been not so good as usual. My chronic fatigue syndrome (CFS) has just taken away what little energy I have and when I sleep now I feel I can sleep and never wake up. I don’t know if I like my insomnia better or the CFS. Getting 30 minutes of sleep per day is really a nightmare but then so is wanting to sleep all the time and having no energy at all. I would love to have something in between them both where I sleep like a normal person and have energy.

My cognitive issues are getting worse. My dyslexia is more jumbled words than usual. My short and long-term memory is worse. A loss for words happens more often. I cannot remember names of actors and so on. I kind of feel like and elderly person or like I have beginning Alzheimers disease.

*This is a note to myself so I will remember but I had a day this week where I was going to the bathroom standing up (pee) and my body started stinging with pins and needles and I was blacking out. Luckily I was done and ran to my room and passed out on my bed for a few minutes. I had this happened a few months ago where every time I stood up I would black out but it hasn’t happened in a while.

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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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Dr. Phil – Chronic Lyme Disease Episode (Airing April 13, 2012)

10 Apr

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Do Not Take CoQ10 While Treating With Mepron or Malarone (Atovaquone)

9 Apr

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