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Posted 3/18/2013 12:36 AM (GMT 0)
We received my husband's IgeneX results. He tested positive for these bands:

**23-25 ++
** 31 +
** 34 +
** 39 IND
** 41 +++
58 ++
** 83-93

Now, we are not quite sure which road to take. His company doctor prescribed Doxyclycline for him to take for two months. Dosage is 100 mg. every 12 hours. He started with ALS symptoms (diagnosed last summer) in 2011. He has muscle atrophy, weight loss, and his hands don't function well, especially his right one (deformed fingers). We suspected that Lyme could be a cause since some of the neurological diseases can mimic it. Sure enough, he tested positive, but we don't know if all his neuro problems are caused by this insidious bacteria. He was told earlier on he could have a pinched nerve. He could also have co-infections that he wasn't tested for. I have read from people posting that this dosage may not be powerful enough for Chronic Lyme. The only other treatment, other than detoxing, he has been using is Cat's Claw (not Samento) and rifing. I don't know whether he should take the Doxy and see what it does or go a different route, like something herbal or some other protocol that is healthier.
Any suggestions would be appreciated. Thanks, Cathy
Posted 3/18/2013 1:21 AM (GMT 0)
Hi Cathy,

Wow - I must say I was anxiously awaiting to hear these results. We had someone leave our company earlier this year after an ALS diagnosis so it really hit home. I'm only 27, and I have had primarily neuro symptoms. I get nausea a lot and even vomit occasionally.

I do not think I was at any point, where your husband got to BUT I firmly believe that this has effected me since 07. I was put on that dose of doxy and I had small herx...all my joints and bones hurt for a little while and Waves of nausea and mild fever too, more neurological issues and then I felt better. Of course right off the doxy and WHAM - everything came back.

And no 100 mgs of doxy won't kill much - also depends on how much your husbands immune system has been compromised and how soon it will recover. Doctors start with that dose because it is too hard on the system to go at a high dose with a high bacterial load. Have you found LLMD yet????

If he has a lot of neuro issues, Japanese knotweed is the way to go. Personally I didn't feel any difference on cats claw but japanese knotweed really reduced inflammation in my joints and neuro issues. Everything is of course different for different people and how they will react. It is good that he is detoxing.

~beth
Posted 3/18/2013 1:23 AM (GMT 0)
- I use whole powder knotweed suggested by Buhner. It is $20 for a pound which will last a long time. Powders should be stored in the freezer too! I weigh 90 lbs and I use 4.5 gm per day. I take 1/2 tsp (1.5 g) and put it in a smoothie or drink with other supplements b/c I got tired of making pills.
Posted 3/18/2013 1:38 AM (GMT 0)
A knowledgeable LLMD will say that his test is definitive for lyme. Bands 31 & 39 are very specific to lyme. Both of those were positive on my western blot also and my LLMD said it's indisputably LD. I'm not sure about the other bands.

More than likely, the LD and co-infections have caused all of his symptoms. All of the symptoms you mentioned are symptoms of LD.

You're correct, 200mg of Doxy per day is not enough. It will keep it from reproducing, but won't kill it. The recommended dosage for LD is 400mg. Also, the doxy needs to be combined with other abx. to kill the L-form and cyst form of the bacteria. However, it may be beneficial to go ahead and start the doxy while waiting to see a LLMD.

In order to be properly treated for LD, he will need to see a LLMD. Have you had any luck finding one?
Posted 3/18/2013 3:09 AM (GMT 0)
Thank you so much for the advice. I read an older post that said a person felt worse off after stopping the Doxy, but we will give it a go and see what happens. I don't know if the doctor will allow him to keep going with it long term. At least he was willing to agree to the IgeneX testing. We haven't checked out a LLMD yet. We were waiting to see what the lab results said. Apparently there is at least one in the immediate vicinity of where we live (the northwest). I have heard of Japanese Knotweed being a good herb to use. We will try that, especially since you say it can possibly help with neuro issues. I also appreciate info. ie. what the different bands stand for. The report is like trying to read a foreign language. (: Mystery, You are the first person to say that my husband's symptoms are all symptoms of LD. When I started my research on LD, I desperately looked for people with the same or similar symptoms, but I couldn't find any. I kept with the idea he might have LD though, and I'm glad I did.
Thanks again. We feel so blessed to have found all of you.
Posted 3/18/2013 12:21 PM (GMT 0)
Glad to help, Cat. Most ID Drs. won't continue with abx. long-term, but it's worth going on the doxy even if it's just in the short-term. Keep in mind that he may feel worse on it because of herxing.

That's good that there is a LLMD possibly near you. Make sure he/she is ILADS trained, ask how long they've been treating, what their success rates are, if you would be able to contact them between appts.. It may require travel to see a really good LLMD, but it is worth it!
Posted 3/18/2013 10:30 PM (GMT 0)
Thanks again for such good advice. I will definitely keep the LLMD questions in mind when contacting one. Actually I think the one not far from us was recommended by ILADS. I have to check, but I did request a list of LLMD's from ILADS last year. Take care.
Posted 3/19/2013 5:06 PM (GMT 0)
Hi Cat,

Please keep us updated on your husbands progress. I mentioned this to someone today who was close to the old coworker that was diagnosed with ALS and he kind of scoffed at me. I would somehow like to reach out to this person to let them know maybe they should get checked for lyme through Igenex. As a wife and knowing what your husband has gone through, please get back to me in a few weeks or months or if you think I should write a letter to this person perhaps? It would be nice to have your perspective.

Thanks
Posted 3/19/2013 9:09 PM (GMT 0)
Yes I definitely will let you know Opugirl. I am such a scatterbrain though so maybe you could remind me. I certainly think it's worth it for any person diagnosed with an autoimmune disease to check for Lyme. When diagnosed with a life threatening disease like ALS, what has a person to lose.
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