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Old 02-11-2012, 09:17 AM   #1
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Cool Lyme Disease, neurosarcoidosis,

Hi everyone, I am new here so I will introduce myself. My name is Shirley, just call me Sheryl, "don't call me shirley", lol Some of my story:

I am almost 72 years old, I started having "nerve pain" symptoms of sarcoidosis in 2006. Which I had no idea that is what it was.

I contacted Lyme Disease in 2009 and started having lung and sinus infections in early 2010. I started losing feeling in my legs in late 2010 and was diagnosed with neurosarcoidosis.

None of the Drs. I went wanted to hear or even listen. when I told them I had Lyme Disease and only one prescription of Doxyclycine.
They did a lamendectomy, which really messed me up. They put me on steriods (which, from what I have read) is the worse thing you can do for Lyme Disease.

Long story shorter: I am totally dependent on others for my care. I can't walk, drive, take a shower by myself, both bladder and bowel incontinent. I have no feeling from my bra area to my toes except for heaviness and tingling numbness. This is not living.

I think my new Dr. is going to help me do the Marshall Protocol. I will find out next week. If she will prescribe the meds I'm going to do it. If she doesn't I'm going to keep looking till I find a Dr. and then I will start.

Is there anyone here doing the MP or do you happend to know anyone who is?
I haven't been doing much reading on Lyme disease since all my doctors are focusing on the sarc so I know a lot about that; this is my theory:

I've had "lung infections" many times over the years and my doctors told me to "quit smoking" seemed as if everything I had, even a hangnail was caused by my smoking. I was very protective of my "friend" "nico" is what I named him after I quit (another long story) Anyway I never heard the word "sarcoidosis" but I do remember one of them saying something about my immune system. So I'm assuming it began in my lungs, as it usually does. It kept going in and out of remission until I got Lyme Disease .

I had a serious sinus and lung infection. I went to the acuepuncturist and natural health Dr. in Garberville, CA I no longer trusted my regular Dr. because she would not listen to me when I had a horrible rash and the tick head still in my body

She said it was an alergic reaction She also said we didn't have the ticks there that carry Lyme Disease. I told her I had been doing a lot of research about Lyme Disease . and said she wish her patients would stay off the internet!

Then after I made her take blood and she told me I had Lyme disease she would only give me one prescription of Doxyclycine. When I started having symptoms shortly after I finished the prescription and went back to her she told me I was going to ache and feel like **** some of the time but my immune system would take care of whatever came along and I would be fine

. That worked for a while and then my sinus and lungs were in pretty bad shape when I went to Dr. Sterns and he gave me another prescription for doxycycline but that was in Nov. and I contacted Lyme in March so the borriolie fudiotchies, lol ( Have no idea how to spell what was multiplying in my body)

. Any I have done a lot of research on the MP and I believe it is my only. I know it's a life time committment but so are the "batteries" conventional medicine has to offer to cover the symptoms and prolong suffering while doing nothing for Health. I'd rather kill the "lil bastards" this is WAR. lol

This probably doesn't make sense......,my brain fog is getting worse too

Thanks for being here.

 
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Old 02-12-2012, 01:48 AM   #2
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Re: Lyme Disease, neurosarcoidosis,

Hi Sheryl,

Sorry to hear of all your difficulties.

The Marshall protocol was in the forefront some years back but his ideas not only didn't hold up to scrutiny but many lymies developed real problems on it, even dire ones.

One of the things he advocates is avoiding Vitamin D, which many lymies are deficient in. As we know, a deficiency in vit. D can in itself cause problems. His views IMO are just not sound. There are other alternative (sans abx therapy) type protocols you could look into, if interested. I personally think Salt/C superior (it saved my life!) but there are many others as well.

I see you are in Northern Cal. Dr. G and Dr. A, who specialize in Lyme, have a practice in the Sebastapol area. I realize you are probably unable to travel, but if you wanted a second opinion.

Wishing you better days ahead,

Jen

 
Old 02-12-2012, 07:42 AM   #3
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Re: Lyme Disease, neurosarcoidosis,

Hi Jen,
Thank you for replying. I feel so lost I was so hoping that I would hear from someone who was getting better on the MP. I don't know what to do, what I've been doing for a year is killing me.. They had me on steriods and that is horrible for Lyme. I had a 13 cm mass of granulomas on my spine and they did a biopsy instead of just leaving it alone. They made my spinal cord mad or damaged it and now I may will probably never be able to walk again.
My body is totally deficient of vit D which is good if i'm going to do the MP if not no telling what it will do.
I'm almost 72 and if it were possible I would get on hospice drugs and get the hell out of here I don't think I have the stamina to fight these diseases without some kind of hope and I see none. Whine, whine, whine.

Thanks again for being here.

sheryl

 
Old 02-13-2012, 02:19 AM   #4
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Re: Lyme Disease, neurosarcoidosis,

Sheryl,

My only advice would be to start D3 immediately, but that would be contraindicated if you plan to go ahead with MP. However, many of your problems could be due to this deficiency - fatigue, weakness, despondency, various pains. If you started feeling better after taking the D (it takes awhile to start raising your levels) you might find that hope you need to persevere. Another suggestion would be to find a lyme support group in your area. This might also help you to locate someone who has tried MP.

Whatever you decide, I wish you better days ahead.

Hugs,

Jen

 
Old 04-08-2012, 06:10 PM   #5
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Re: Lyme Disease, neurosarcoidosis,

Hi all,
No I haven't posted in a while and to tell you the truth I lost you. i just ran across you again so I will tell you how it;s going in my world.

I am going to a rehab facility tomorrow for three months, then when I'm stronger I am going to do the Marshall Protocol. I've done my research and read all the pros and cons and it makes a lot more sense to me than what I have b
een doing and Vit D will kill me so I think I will not do that. I will let you know how it's going and thanks to all of you who replied I sure am grateful for any encouragement.
Sstarli

 
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