posted
You have "+" on borrelia specific bands..wondering how are you doing with the treatment you just wrote. Do you feel better?
Posts: 983 | From The sky | Registered: Feb 2005
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posted
No. CNS deterioration continues. This seems to have accelerated in the last four months on Abx, but they may have nothing to do with it.
I can still talk & eat normally, I can still walk but with a limp and extreme fatigue. My hand and arm strength has just passed a point that I no longer drive. Hands arms and shoulders showed significant atrophy, fasciculations (twitching) come and go & move around and vary in severity.
Don
Posts: 5 | From CO | Registered: Apr 2007
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Try contacting Dr. M mentioned here. He was diagnosed with ALS. I know he went from a wheelchair to a fully functioning person practicing medicine again and helping others with ALS.
posted
Thank you for the info. Forgot to mention, Dr. M is my LLMD, although closing/retiring in six weeks.
Don
Posts: 5 | From CO | Registered: Apr 2007
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Have they tested you for Bartonella?
Could Bartonella be playing a role in this? I am not an expert, far from it, but read all I can, as I have lyme and tick infections, and am ill in a different way.
I did read on one of the lyme brochures that Bartonella can cause Neuro involvement and to look to Bartonella if the lyme is not getting better.
It may be the wrong thing, maybe not, just some thoughts.
I hope you find some answers, and hope your LLMD has treated ALS/lyme patients, and if not, then maybe you can find a LLMD that has had success in treating ALS/Lyme patients.
Hope this helps.
also, there are strains of lyme that the IV Rocephin does not work so Dr B suggested the Primaxin, or I think? Imipenim, and the Vancomycin.
I hope you find the answers.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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posted
I agree with Health, if some symptoms are getting worse after almost four months on the current treatment, you need to rotate abx and go for other co-infections.
Probably your current LLMD wont switch you since he his retiring soon, why don't you set an appt ASAp with another LLMD.
Posts: 983 | From The sky | Registered: Feb 2005
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I read on here that some had the IV and it did not start to get them better up until month 6-8.
That is a long time, BUT if you are not getting worse, and MAYBE there is tiny improvements, then they knew to continue on with the IV.
I know when I was in LYME treatment on orals, I started to get worse, and I was relapsing, while IN lyme treatment so I was switched to a different Lyme antibiotic and was better.
I then was IN lyme treatment and got totally NEW symptoms in lyme treatment, the light sensitivity started, and stayed in lyme treatment for about one month more, to see if got better, but did not, so
was then put in Babesia treatment, and the light started to get slowly better, but I noticed in ONE day, and also had a severe herx in babesia treatment, then little better.
So, maybe ask on here about the IV treatment, and the ones that did not have improvement until month 6-8, did they get worse at all, or did they slowly see tiny improvements
which made them continue on treatment.
That is scary with the ALS symptoms you are experiencing, to keep going in treatment with IV and not getting better for some many months, I would think? that there must
have been SOME clue for them to keep going?
I have always had tiny improvements, so I would know to keep going, and work with LLMD,
I would be concerned if I were you, and it is good to just ask to see what others have gone through and to reassure you, your LLMD is treating you right, but sometimes you think?
is he/she doing the right thing? it is good to know that he is. It builds your trust in them, and trust in your LLMD is invaluable to me while in treatment.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Don, re M A-B and Flagyl- no, does nothing, he gave up on any cure for ALS. I'm Sarah from CA. I used to moderate the ALS/Lyme group and probably know more on the subject than anyone. I was on IV for 9 months and on orals a year previously with no repsonse, definite Lyme, with MS/some ALS, some Parkie symptoms- I did not respond until month 7 of IV-
I had progressive muscular weakness leading on my left side to where I could no longer walk or rise w/o help- And ataxia- and total loss of balance- and twitches everywhere including the rolling ones- and choking on food- and chorea- and slurring- and got real SLOW- and started to go into dementia-
anyway, I am fine now except I can't go off abx without declining. which is fine. life is good.
ALMOST every ALSer I know who has lived with Lyme treatment was treated for Babs as well so I am glad you are!!!- my phone number is 1-831-662-3628 but don't call after 8 west coast time*)! (put kids to bed) It is good you are limb onset. Bulbar onset has worse prognosis-
My advice!!! STAY ON ROCEPHIN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
You might want to go off the Flagyl though-
some orals trigger ALS/Lyme to be worse. Have you read up on the TBE virus stuff? When we had a big ALS/Lyme group the same thing happened- some people lived and recovered but for many orals speeded them up-
STAY AWAY FROM OTHER ABX other than ROCEPHIN or BIcillin!!!!
I would suggest taking, it is called Ledum and it can inactivate TBE viruses- vets use it for Lyme and it helped a couple of ALS Lymies I know- you can get it anywhere- health food store-ish- I took it when I was really sick and so did 2 of the 3 guys that have done well around here- may mean nothing but it does inactivate TBE and one guy felt it really really helped him to where he felt different on it or not-
You may live. I hope you do!!! Some people DO turn around but NOT without Rocephin. Stay on the Rocephin. I know only ONE ALSer who made it with orals and he was given orals right when diagnsoed ALS. SO STAY ON IV-
Of 4 local people diagnsoed ALS 3 are still alive around here. The guy who died died of c. difficile his first week on Rocephin- he was last ALS and very very weak- the other 3 are alive- one is back to normal but like me stays on maintenance abx- one gets normal and relapses the other last I heard was struggling but not dying at all- which is nice-
Nice to meet you- welcome*)*)!!!!!!!!! I hope you stay around a long time!!
Best wishes, 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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posted
in 2003 I was diagnosed with MND. My left hand fine motor skills were a little off. In 2004 I was told I had PLS a form of ALS. I had a slight limp when cold or nervous. In 2005 I tested positive for Lyme. I started IV rocephin and oral ketek. I continued to get worse and my speech became affected. By late 2005 I was on mepron as well. In 2006 I stopped rocephin but added iv zinacef, oral malarone, and zithromaxt and ketek. I continued to decline. In May 2006 we went to Dr M in CO and I have been on the same protocol as Don with no improvement at all. For the past month I myself stopped everything but rocephin. If nothing is improving only deteriorating ( I use a walker all the time and my husband has to dress me and help me downstairs and my speech is awful) why put all that crap in my body? I am totally disgusted about the whole situation. Debbie
Posts: 39 | From NJ | Registered: Nov 2005
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Have you been tested for mycoplasma fermentans?
CNS infections from it can also cause ALS symptoms. It is very common to have both lyme and mycoplasma.
I deterorated for 1 year straight when I "just had lyme". Every antibiotic failed me: Zitrho, Biaxin/Plaquenil, Doxy, Rocephin.
A positive PCR on my spinal fluid revealed a mycoplasma infection. Now I'm 95% better and I was probably only months away from an ALS diagnosis (I only had two limbs affected but it was still spreading).
If you are not responding to antibiotics it is probably a co-infection. Mycoplasma should be considered as part of any future tests.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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posted
Hi all, I am a patient of Dr. M. I started treatment with my local GP before I saw Dr. M. So, I was on Doxy for 3 months. Then after I saw Dr. M., he put me on Rocephin injections (I can't afford IV and I work with horses all the time so keeping it clean was also an issue).
Then he added Biaxin then Flagyl. I went downhill at first too. He thought I was herxing too much. So, when you feel really bad, try not to think the treatment isn't working but rather that it is working.
A month after he started me on Lariam for Babesia, I have started to see an improvement. I am slowly getting stronger and am not as tired as before. I still have a long way to go but for the time being, things are looking up for me.
I guess my point is treatment will make you worse before you get better and targeting the co-infections is necessary to get well.
I'm in the same boat as all you other Dr. M patients. We don't know where we will go after July. But he will not leave us without a treatment plan and doctor referrals.
Hang in there.
-------------------- Sick and Tired of Being Sick and Tired Posts: 185 | From Colorado | Registered: Sep 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi dbl30569
I am sorry you are so sick
I had very bad neuro lyme & tanked big time in my first 4 months on IV, I was so much worse. It wasn't untill 6 months into IV & many IV combo's that I started to notice small improvements
Hang in there Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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ByronSBell 2007
Unregistered
posted
You are on some very good ABX, stay on them because they will really punch that lyme population down. Alot of people on here dont see improvement for months or years... I also have a lyme friend that was 100% disabled from parkinsons (actaully lyme disease) and he started IV and got worse during the first 6 month and then turned the corner, now he is teaching high school and has a family of 7 KIDS!!! he is still not well but about 80-85% after being on treatment for almost 2 years.
What is the deal with 6 Months? Seems like everyone I here from that has had it a while always says, "yea, around 6 months I started feeling better..." I'm at 5 months, hopefully the light will shine soon!
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posted
I was diagnosed ALS,in 1995.Told i had 6 months, i had to catherize,have bag enema's,everything was shutting down.Bedfast 3 years,I been with a lyme doctor 10 years,and im doing much better.Still have some twitches time to time, i used to have about 500 a day.Looked like a bag of worms on my calves.I walk ok,and my life is at about 70 percent.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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