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Posted 2/18/2015 9:06 PM (GMT -5)
Hi Girlie, no offense taken whatsoever. Yes he has been tested but we all know about Lyme tests! He has pulled a lot of ticks out of him that had burrowed in. His primary has him take 2 days of doxy each time because he already has a compromised immune system. He talked in depth to his neurologist about it. He has muscle wasting and other symptoms that are more indicative of what he was diagnosed with.

Who knows! My dog was diagnosed with anaplasma just after I was diagnosed with it. I asked my neurologist if it was possible that a dog/cat can pass it to humans and vice versa. She said there wasn't enough info to know. Also a woman in China was brought into an ER room and later diagnosed with it and died. 9 of the health care workers were later diagnosed with it. So some of these infections can be transmitted through saliva etc. Sorry got off the subject!
Posted 2/18/2015 9:23 PM (GMT -5)
You will be in my prayers too, sailorkim! Have faith!
Posted 2/18/2015 9:33 PM (GMT -5)
mtlassor - two days of doxy wouldn't do anything if the ticks had given your boyfriend Lyme disease. Btw - muscle wasting is a symptom of Lyme disease. I have it below my left shoulder blade and left arm and hand. Also to a lesser extent on my legs. The muscle twitches and tremors are also symptoms of Lyme disease. Most neurologists would not recognize Lyme disease - only Lyme Literate Drs know and recognize it.
Has he seen a LL Dr just to rule out Lyme a Disease? Again I don't mean to offend you - I was just wondering if he did ever see a LL Dr.
Posted 2/19/2015 3:13 PM (GMT -5)
Thanks for responding Cat53!!! I do hope all is going well.

And thank you for pointing those things out, Girlie. I too was thinking about them and was going to say something.
Posted 2/19/2015 3:26 PM (GMT -5)
YW Trav - I hesitated - as I don't want to be pushy and offend mtlassor - but I worry that her boyfriend is suffering and it could perhaps be lyme disease and be treated. (especially with those symptoms - it really could be lyme disease...coupled with the tick bites.)

Sometimes it's difficult to get our hubbies to the Dr. As I type this, my hubby's blood sample is enroute to sunny California...yup - Igenex lab. woohoo!
Posted 2/19/2015 3:32 PM (GMT -5)
When someone comes to a Lyme forum they should expect us to ask - especially this one :-) we care too much about others here to not ask - and you did it nicely. yeah

We have people that pass through here that do not have Lyme, but they should be warned that their symptoms could be from it, otherwise how would they know? And, as I said, I was thinking the same things and would have posted myself, but you said it well.

And yea for your hubby's blood!!! I hope that it reveals some answers for you two!
Posted 2/19/2015 8:47 PM (GMT -5)
Not offended at all. I don't know if he did have Lyme testing but no he has never been to an LLMD. I haven't been myself. There are a few in my area. I did just find a Dr. that is both an MD and a scientist so I have sent in my Lyme resume to ask for a consult. The next time my boyfriend has a neurology appt., I will have him talk to his neurologist who is a very open minded man.

His brother passed away from ALS and he probably knows more about the disease than most MD's. He is a well read person and will take into consideration what has been discussed here.

Thank you!
Posted 2/20/2015 2:34 PM (GMT -5)
I hope he finds the answers that he may still need, Mtlassor. ALS is a wicked disease. Different from Lyme because Lyme can be healed at least.
Posted 2/20/2015 9:19 PM (GMT -5)
I asked him about being really tested for Lyme and co-infections and he told me his neurologist tested him in July after the dog and I were diagnosed with anaplasma and me with Lyme. It was the Western Blot test so I don't know if that is reliable. I had a C6 peptide that confirmed my Lyme. All his testing was negative. He is confident that he has MMN or CIDP. He has had muscle issues for over 20 years and does not exhibit many of the symptoms that I have. From my first hand knowledge of ALS, he wouldn't be alive if that is what he had. Most that are diagnosed live 2-5 years and there is a downhill rapid decline. His brother lived 8 years after his diagnosis which is unusual. He had the will to live but was totally incapacitated and in a lot of pain. It was one of the saddest things I have ever witnessed. A strong young man in the prime of his life who had been in the service and was a ranger in the 10th Mountain Division reduced to living in a wheelchair & wasting away.......
Posted 2/21/2015 12:28 PM (GMT -5)
Horrible and scary. I'm so sorry for all that you and they have gone through.

The Western Blot will only catch about 50% of those that really do have Lyme disease - but, because it too only looks for antibodies to the bacteria, not the bacteria itself and the fact that Lyme (especially when combined with Bartonella) inhibits the immune system, it won't catch very many chronic infections at all.

We actually have no tests that will work well, detecting a majority of cases including chronic infections. It took me being on very, very strong abx doses for a full year before I got a positive Western Blot. Fortunately I knew not to wait until I could get a positive test before treating.

Other conditions do need to be crossed off the list though before just assuming that it's Lyme and beginning treatment. Just be sure to know what Lyme is and causes so that you can help him understand what he is dealing with. You know what to watch for and are learning more each day, so just keep an eye on your guy - and we're here to help with any questions!!
Posted 2/21/2015 6:31 PM (GMT -5)
Thanks Traveler. I have a hard time understanding why so many people are being misdiagnosed with ALS when it's Lyme especially by neurologists. That's why I posted to SailorKim. I was told I could have MS by a neurologist in May because I had white spots on my brain. She said only 2 things cause that-migraines & MS. Well, not true, Lyme causes them also which I found out after the fact. So my point in all this is we are all being misinformed & misdiagnosed. An ALS diagnosis is so horrible:"To be diagnosed with ALS, patients must have signs and symptoms of both upper and lower motor neuron damage that cannot be attributed to other causes." And ALWAYS get a 2nd opinion!
Posted 2/22/2015 12:06 PM (GMT -5)
There is such a vast amount of denial about the information concerning chronic Lyme that it is really scary. No one wants to take this seriously -except the patients (many times not even their families believe it!) and I don't believe it will change until we get the term "Chronic Lyme" accepted. I pray that I'm wrong though.

The only thing we can do is to fight the ignorance - whether it's a willful ignorance or not. Do what we can to inform others and to change legislation in our own states.

There are a lot of diseases and conditions that are routinely used as a misdiagnosis for chronic Lyme - most of which aren't curable or hardly treatable and many involve the use of steroids.
Posted 2/25/2015 7:27 PM (GMT -5)
I have Lyme, positive blood test. I have been diagnosed at one point with MMN and then atypical ALS. Atypical because I was 20 years old at the time, my other symptoms and how my neurological symptoms presented. These top neurologists ignored symptoms like recurrent UTIs, joint pain and stiffness, and raynauds. They constantly shot down lyme as a possibility because I tested negative. Fast forward a few years and I finally test positive.

Fortunately I had found two doctors who had started treating me for Lyme before positive test. I have been on antibiotics, supplements, herbs, and vitamins for a year and a half and am so grateful that I haven't gotten any worse but am still searching for something that will help. I'd be happy to answer any questions by email.

Stay strong
Posted 2/25/2015 9:00 PM (GMT -5)
jezabelle

Thank you for posting. It gives me hope to hear your story. Are you still on abx?
Posted 2/25/2015 9:10 PM (GMT -5)
No, I stopped antibiotics five months ago. I focus on detox, exercise, and healthy diet with herbals and supplements. I truly believe I could have stopped progression early on if I had known it was lyme then. Focus on getting your immune system healthy and do not listen to the negative opinions of some doctors who hardly try to help.
Posted 2/25/2015 9:25 PM (GMT -5)
Oh and I think it is very important to address genetic mutations such as MTHFR. I am homozygous. Do some research on this.
Posted 2/26/2015 6:41 AM (GMT -5)
I just had labs done that include MTHFR. I think the results take a bit to come back as it's been a little over a week. I have a great LLMD so he is leVing no stone unturned. I have listened to my body for once and went to the doctor last year when my neuro and physc symptoms went thru the roof. I just can't believe in the end what the neurologist diagnoised me with. I went from there is no way you have als to nope you have it. Was diagnosed without full criteria because of a dirty emg on my arms. Even with that neuro I had equivocal lyme tests and he would not address. Just said its negative. I am going to follow my lyme protocol and pray I can reverse some of this. We sound like we have a lot in common with our disease. Thank you so much for posting. I may reach out to you when my tests are back for advice!!
Posted 2/26/2015 3:04 PM (GMT -5)
No problem! Sounds very similar to my story! Keep me updated and of course, if I have any breakthroughs, i 'll be sure to let y'all know!
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