posted
Its been 6 months (I know thats not long) since western blot came back positive for my husband. He was diagnosed with ALS 4 years ago. So is it both or one or what? Anyway, since started treatment he's been getting weaker and having sleep problems - just generally going down hill. Not a herx reaction anywhere according to the LLMD. So what do we do since we don't know what the real problem is. We don't think its' ALS but we could be wrong. Any advice from those who have been down this road. Thank god for your advice and this site. I think I'd go crazy without it!
Posts: 23 | From Pennsylvania | Registered: Jul 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
I am so sorry your husband is sick. Do you have the best LLMD you can find? I believe having a doctor that looks at all angles is life changing. Heavy metals, molds, virus, bacteria, parasites, co-infections, allergies... there is so much to consider.
I think ALS is just late stage lyme. Your husband has a positive W.B. -- keep treating lyme!
Look into what may be keeping him ill. In complicated lyme cases heavy metals and mold are almost always a factor.
Is he on IV abx?
I suggest you watch "Under Our Skin" and/or "Under the Eightball" both documentaries have examples of ALS being diagnosed when Lyme was really the cause.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
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From what I've heard, ALS is a very tough form to fight. As the previous poster mentioned, I would have the best LLMD possible and one who has experience with the ALS presentation of Lyme.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
We do have an LLMD that came highly recommended and has treated patients with ALS. It's interesting..of his 76 ALS patients, 72 have tested positive for lyme. He's been doing this awhile. I have seen under our skin but not the eighball-add that to my list ASAP. He starts another round of rocephin iv tomorrow. last time he did it for a month (different doc) with no orals with it. Our current doc feels that iv and orals have to be done together to be effective. I'm just worrying about getting worse and not being able to get better. Most docs don't seem to think he fits the ALS profile (he was 36 when dx'd due to leg weakness) but of course our neuro has no desire to even think about lyme.
Posts: 23 | From Pennsylvania | Registered: Jul 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
So you are going to do rocephin and orals... is that limited to a month of treatment?
Hopefully not, he will likely need more.
What is the oral(s) he is doing with the Rocephin?
Has he been tested for coinfections?
Just to warn you, the lady in Under the Eightball is diagnosed with ALS. They suspect she has lyme but she is not treated properly for lyme. They don't find out that she definitely had lyme until after she dies. It is a documentary of what can happen if lyme is not treated -- or treated as something it is not.
I am glad your husband is starting rocephin tomorrow. Please keep us updated on his progress.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
He is doing rocephin and flagyl. at this point its open ended but at least 2 monlths of the rocephin. he's had the flagyl now for about 3 months. He has been tested for coinfections-negative but some symptoms sure sound like coinfection types. thanks for the warning about the Under the eightball! I think I'll watch that one myself. He has an excellent attitude about all this so I try to keep the yucky stuff away. we always say he may have lyme but it doesnt have him.
Posts: 23 | From Pennsylvania | Registered: Jul 2010
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After treating with antiparasitic herbs and salt/c EVERYTHING pictured in thse photos came out of me.
I was in total shock as I had already done 4 yrs of abx including 6 mos of IV rocephin. Do a search on here for parasites and also google the symptoms.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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