posted
My brother was admitted in the ALS/Rocephin study at Mass General. He gets hooked up tomorrow.
Only 2/3 of the patients actually get the rocephin. Can anyone give me some ideas on what to look for if he is actually getting the rocephin?
Do you think he will be able to tell if he is getting it? What are common things people experience in the first couple of weeks of IV rocephin?
He is in a wheel chair. He can stand for a few seconds. He can still use his hands and arms a little. His speech is getting a little garbled.
Any thoughts?
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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posted
I work in the pharmaceutical industry and I can tell you a great deal of time is spent trying to mask people from determining placebo versus active drug.
My thought is that the only way he may be able to tell is if he sees some improvements or starts having some complications from the antibiotic.
Ugh, so hard to have to do a study like this and not know whether you are one of the chosen ones. How long is the treatment protocol??
Posts: 561 | From mass | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Look for a herx....a worsening of symptoms.
Hope your brother gets the "real" stuff.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
This is a complicated question because your brother might also have coinfections. Has that been considered? Also, the ALS/Lyme patients don't all respond the same way. The herx, as was suggested, is one thing to look for. But I would suggest that you keep us updated on his reactions frequently because this may not be as straightforward as he hopes. And the people who are running this study are not understanding the complexities of treating ALS/Lyme. They have not given adequate consideration to the ALS subpopulations and the differences that might make.
But it is certainly worth trying and I hope he gets the med and it works well for him.
Posts: 8430 | From Not available | Registered: Oct 2000
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Rocephin works best in the chest area and if the muscles are weakening and speach and throat are showing signs of less control, you may see an immediate improvement in those systems if he has lyme and not some other infection. You may also see a progresssion in other areas, like the hands and legs.
Has he been tested for lyme and do you have a LLMD? If he has lyme, he would not want to stay on just one drug and the study may not allow others. Finding a LLMD could become very important. There is at least one LLMD who has been sucessful in treating ALS symptoms caused by lyme.
Some LLMDs use Cyst busters and blood thinners to fight lyme. It is also improtant to use some type of toxin remover and supplements.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I am glad he is in it because of the situation he is in. I am sorry he had not been able to get treatment from another doc.
I have one thing but I don't want to tell you- or rather, don't tell HIM so that he won't be suggestive about it.
I don't even know if this was just me or not, so it could mean notihng. But whenever I began to infuse Rocephin, I would get a saliva response where somethign in my saliva would get cold at the base of my throat. SOunds werid and may just have been me but it felt chemical, it felt like a reaction to the drug itself.
I am glad he is doing the study. Bless him!!! I will pray for him.
For me I continued to go downhill for 6 months before I turned, what Ropcehin made me do was have a deep profound narcoleptic sleep reaction. I slept many days for 20-22 hours a day... and many things seemed to be getting worse, well, were getting worse, and then at long last I changed for the better and from then on it was quick!!!
I hope to God your brother is getting Rocephin not placebo. Besest wishes & Bestest prayers, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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My brother was diagnosed with ALS first in Boston (about 18 months ago). Then, after reading some posts here we sent him to get Igenex testing by a LLND - it was positive.
The LLND got him on Zithromax and mepron based on symptoms. Since it was kind of over his head, the LLND sent him to Dr. D in Boston who diagnosed the ALS/Lyme officially.
Dr. D told him to stop taking the mepron and Zithromax since Igenex coinfection testing came back negative. Dr. D won't treat my brother for Lyme with IV Rocephin although he did think the rocephin would help the ALS symptoms. DR. D seems to be about orals and not big on coinfections. DR. D gave my brother's PCP a detailed treatment plan to follow for IV rocephin.
The PCP had initially said he would follow what Dr. D wanted to write up as far as how to treat my brother.
However, once he got the papers from Dr. D the PCP chickened out and Dr. D will not even do the IV Rocephin treatment himself.
My brother is to sick to travel to a LLMD who would be willing to do the IV. Our LLMD, Dr. J in South Carolina (formerly North Carolina)said he would do it but since he has ALS it is very complicated and would require very close observation.
He wouldn't be able to get it and go right home. My brother is unable to come here and stay for that period of time.
The study is his last hope to get rocephin. He had to stop taking everything in order to be eligible for the study.
I suspect he does have coinfections since the zithromax and mepron did make his "electrical" leg pains go away. He was on that for a few months. Maybe it was enough to do something.
At this point we are just praying that he is getting the Rocephin and that it is enough to at least prolong his life a little.
This is the end of the 1st phase of the study. It is possible that it will continue for several years. It depends on the results. If the results are show "significant" benefits, they may consider giving all of the participants the drug. Their definition of significant seems kind of impossible.
I know everyone reacts differently to the drug especially since they may have other underlying infections and problems. But I was thinking that if I heard my brother say he was experiencing this or that... I would know he was getting Rocephin.
We have three generations in our family being treated for Lyme - 4 of us in all - so far. My brother is the sickest.
Thanks for the replies. If anything else comes to mind, please do let me know. Thanks!
-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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-------------------- I do not feel obliged to believe that the same God who has endowed us with sense, reason, and intellect has intended us to forgo their use. -Galileo Posts: 61 | From South Carolina | Registered: Oct 2007
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