Old 01-21-2011, 12:01 PM #16 (permalink)
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Default Re: Misdiagnosing ALS

I really do not know what to do. I went to germany in the summer and had activity for Borrelia and Ehrlichia in my cells. I started treatment with Azithromycin which made my heart hurt. I took 500mg of it three days a week. Together with the herb artemis annua. Any suggestions to what I should do?
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Old 01-24-2011, 05:11 PM #17 (permalink)
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Spend your money on a nice trip rather than chasing false hopes. Spend time with family. Live for today.

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Old 01-27-2011, 05:35 PM #18 (permalink)
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We agree with AL. $3000 a month could sure pay for a fine vacation or special equipment or a new whirlpool tub or something like that.
We don't want to forget that people out there want our money. I can't believe that there are those that would be tested and tested until they get a positive and then are willing to dole out the money for treatment. Please talk to your GP and if he (she) doesn't see an indication for Lyme disease, then let it go. We are told we need many things that just pad the pockets of others.

Believe me, we are not wishing ill-will on anyone, nor do we object to having hope. Things are worth a try if they don't drastically put you in stress in another way.
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Old 01-27-2011, 10:55 PM #19 (permalink)
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gusflower - you need treatment for those infections. find a good llmd on lymenet.org. You may have to travel but isn't it worth a try?
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Old 01-28-2011, 03:20 PM #20 (permalink)
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NotALS. I can't believe people who say that we should not give it a go. I mean would you rather live with an ALS disease than try to recover from Borrelia. I'm 29 years old. There's no way on earth I would like to have only 5 years left to live with the hopeless things that are happening to me. I have cell activity for Borrelia and Ehrlichia in my blood. Not trying to get rid of these cells with antibiotics would be stupid and for my own sake at least worth it. When the cells are out of my body and if I'm still ill then I'll join the maladie club of what I end up with. It must be worth the money, and with the latest studies on treatment with ceftriaxone then that is not such a bad idea anyhow

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Old 01-28-2011, 07:29 PM #21 (permalink)
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Hi Gusflower,

How did they find your Borrelia & Ehrlichia infection? Blood tests? (Just curious.) Getting antimicrobial treatment for a possible Borrelia and/or Ehrlichia infection is way different that going to China for stem cell treatment. My only question to you is: Is there any known interactions between the artemisia annua and zithro? I would find out about that, and about other microbiotics to treat your infection. Here's hoping it works for you!
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Old 01-28-2011, 08:03 PM #22 (permalink)
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Hi Lynster!

They did it with blood tests at an ILADS institution. I was not tested for all the co-infections. I have the chlamydia one's to go through also. Which I will do soon. Now I did not have antibodies for the infections. I had cell acitivity which was pretty high for Borrelia. They explained that I could have a possible infection and put me on the antibiotics. After 4-5 weeks my heart started to hurt (maybe herxheimer, I don't know, but usually your heart hurting is not a side effect of antibiotics, which makes me think that the answer lies there somewhere too) I quit the treatment. Went on with my life. Which was maybe stupid. Now they have to use another drug to treat me. Also on another note, I haven't had any fever for about 2 years which makes me think that my immune system is supressed in some way. I only have flu like sympthoms. I think my answer lies in there somewhere. Or at least I hope so. I'm so young. If it turns out to be ALS then at least I know it was because of tick and a co-infection that I treated to late.

Borrelia
The results of lymphocyte transformation tests are an indication for a current cellular
activity against Borrelia burgdorferi.
Please recognise, that there were less lymphocytes in general for stimulation in Elispot-
LTT, so that the actual activity results can be higher for Borrelia burgdorferi.

Ehrlichia
The result of the Elispot-Lymphocyte-Transformation-Test is an indication for a
borderline actual cellular activity against Ehrlichia.
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Old 02-07-2011, 12:27 AM #23 (permalink)
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Gusflower - I've read that lymeALS patients who survived, and there aren't many unfortunately, did iv rocephin and im bicillan shots. they also treated babesia with mepron and zithromax.

I'm going to the clinic in CO that Dr Martz started. The abx are tough on your body so i'm on a forced break from them right now but I really hope I can tolerate them again. It's my only chance.
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Old 02-07-2011, 03:19 AM #24 (permalink)
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I wish you the best NotALS! I'm gonna pray for you that you will get better. I've just started the lyme diet. Only eating green and fish. Oh how I wish they were able to come up with a cure for all our problems. Sometimes I think that antibiotics may be the answer to most of our illnesses, the reasearch just has to go further.
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Old 02-07-2011, 07:17 AM #25 (permalink)
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Default Re: Misdiagnosing ALS

Tom pursued blood tests and had a surprising result, no lyme but leptospirosis. He is being treated for that now, and the doctor said there were encouraging results with lowered muscle (something) readings in the blood. That means there is a slowing in the muscle atrophy.
That is the only light we have, but any hope is good hope so we'll take it. You do what you need to to feel pro-active in your life. Each day is all any of us have at any given moment, do your best with it, I'm trying too.
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Old 02-07-2011, 08:46 AM #26 (permalink)
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We have tried Mepron....Bicillin Shots, Rocefin IV, and IM, and every antibiotic in the book. My hubby was really sick the whole time doing all of the antibiotics. We have also tried every supplement...spent thousands of dollars. I guess my advice is get both opinions. Our problem was that we had a LYME LITERATE DR....treating aggressively for Lyme and ALS Literate Dr. telling us ALS. We chose to listen to the Lyme. Dr.....
Kind of feel like we wasted valuable time in retrospect. I hope you have better luck with the treatments.
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Old 02-07-2011, 12:45 PM #27 (permalink)
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Still Kelly. You turn to the options you have. If you know you've been bitten by a tick like I know I have been then it must be natural to address that as "the cause is the cure". I don't think that you want to just not follow up the tracks you have though there are sure many different factors contributing to ALS. I'm following up my jaw surgery, chlamydia in the throat, lyme, and sleeping problems.
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Old 02-07-2011, 10:52 PM #28 (permalink)
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Gusflower....I totally understand and hear what you are saying. Please know that we have traveled in your shoes....and pray that you have a better outcome from the medicine. We live in serious tick country....I even have a disturbing picture of a tick that was on Andrew right next to his pic line when he was being treated for Lyme. So, I know he was bitten..more then once..tested positive...
He was treated for Lyme for two years until we stopped. We paid over 1,000 a month for the IV antibiotic..did not even count the nursing care and placement of line. We also paid out of pocket for the Lyme Literate Dr..at 400.00 per visit. I do believe that someday they will find some sort of correlation between Lyme and ALS.....that is why we tried for so long. Please know that my thoughts are with you...stay strong! Keep Fighting!
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Old 02-08-2011, 02:07 AM #29 (permalink)
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Thanks Kelly. Your words are very comforting and if I sounded offensive then it is just because I am in a bad situation. My jaw doctor is going to have a look at my lips, tongue and swallowing today. I can't feel heat in my mouth either so there is some kind of nerve damage or irritation. The connection between ALS and Lyme seems quite interesting, but it can't be in all cases, unless lyme goes more active when there is a damage to the body. I'll try living for today and getting my stuff in order. Been going totally green in my diet and going probiotics and magnesium, vitamin B, and D. Say hello to your husband from me. Have a great day.
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Old 02-08-2011, 03:44 PM #30 (permalink)
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I find this discussion very interesting since I am contemplating my next move with my Lyme doc. My original diagnosis was bulbar ALS and it took 3 Lyme tests until I tested positive for Lyme with a special lab. The lab tests also revealed a strong coinfection of Toxoplasmosis. I had done months of IV antibiotics before the Lyme doc figured out that the Toxoplasmosis was inhibiting the Lyme treatment and that both infections needed to be treated together aggressively. The problem is that the antibiotics have definitely taken a toll on my body and left me significantly weaker. My breathing is being impacted because my diaphagm and chest is now weak. (FVC is 44) Proceeding with more antibiotics is becoming more risky but may also be my only hope. I do believe that once we started to treat both infections that slow progress has been made. The question is will I see an upside to the treatments before they render me so weak that I cannot breath without being on the bipap machine constantly? My wife thinks I'm crazy and chasing a pipe dream put into my head by the Lyme doc. I still believe there is a real chance. It's like rolling the dice for my life...do I feel lucky?
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