posted
Hello, I am trying to help a friend of mine that has Als symptoms, but diagnosed with Lyme Disease.
She is not under the care of a LLMD due to lack of LLMD's in Norway. So far she has been on Ceftriaxone 2g /day and Tini 1g/day for almost 5 months. The last 2months the Ceft has been i.v.
After about 3 months she felt that she had improved some, but now suddenly had a worsening 2 weeks ago which has persisted until now. This really scares her as she can barely stand on her legs or walk. She has a lot of fasiculations, losing strength in her body and get the feeling of being paralysed at times.
Please, if anyone has any experiences to share regarding this situation (treatments, what to expect re flares/herx) it will be much appreciated.
thanks in advance, Sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Dozens of people I have met with ALS type symptoms have a dental problem. The research on this is very clear. Root canals are a major contributor, as are infected teeth in general. Hope your friend has none of these.
Mercury in the body damages the tubulin. Without the tubulin, the nerve cannot transport NEUROTRANSMITTERS, and the nerve cannot transport NUTRIENTS up from the nerve endings into the nerve cells. Mercury has been found to be the only neurotoxin that causes damage to the tubulin. We know that there is a link with MS, ALS, with all the neuro-degenerative diseases once mercury enters the cells.
The heavy metal damage is number one. Then the take-over by the microorganism invasions is easy.
Maybe you or your friend can read up on some of this on www.melisa.org
It can be repaired - I did it and many others whose journey I followed did also. Be sure to tell your friend.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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I am sorry to hear about your friend. I have been experiencing the same symptoms as your friend for the past year. My symptoms seem to come and go.. is she experiencing this?
Also, are these the only Lyme symptoms she is experiencing? If she is not responding to treatment I would take her to see a LLMD ASAP.
You might have to leave the country but it will be worth it in the long run. She might have a Lyme coinfection thats causing her symptoms to persist.
Also, based on the length of time she has had Lyme disease she might be experiencing a herx.
When I herx'ed I could not feel my entire body and was so weak I could barley move. I also had fascullations throughout my entire body.
Hope this helps, LuLu
quote:Originally posted by siggy: Hello, I am trying to help a friend of mine that has Als symptoms, but diagnosed with Lyme Disease.
She is not under the care of a LLMD due to lack of LLMD's in Norway. So far she has been on Ceftriaxone 2g /day and Tini 1g/day for almost 5 months. The last 2months the Ceft has been i.v.
After about 3 months she felt that she had improved some, but now suddenly had a worsening 2 weeks ago which has persisted until now. This really scares her as she can barely stand on her legs or walk. She has a lot of fasiculations, losing strength in her body and get the feeling of being paralysed at times.
Please, if anyone has any experiences to share regarding this situation (treatments, what to expect re flares/herx) it will be much appreciated.
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
The symptoms I described are not her only ones - she has a lot of the classic LD-symptoms. But I think loosing strength in her body is what is most worrying her at the moment + fasiculations and feeling paralysed at times. She also has brainfog, sweating, cramps, low apetite, dizziness, heart palpitations periodically, low relfexes in her legs.
She has had LD for 16 yrs, so yes - she could definetively be experiencing a herx. Is that normal though, that it can happen after months on the same treatment? and last for a few weeks?
I agree with you, LuLu - she should be seing an LLMD. ASFAIK, I think the most important thing for her now is to get someone with knowledge to tell her what should be done, IF it's a herx she is experiencing OR if it's a turn for the worse.
Seeing an LLMD will take a few weeks, so for now I am just trying to help her not to freak out AND finding an LLMD to her.
I have LD myself and gone through the worst part with treatment and herxing, so it really hurts having to watch her go through much of the same.
Thank you for helping me out!
Posts: 155 | From Norway | Registered: Jan 2006
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bettyg
Unregistered
posted
hi siggy, glad your friend has you.
since you are now on here, how about doing a SEARCH found at top under new post.
type ALS medical subject line any date; make sure you edited MY PROFILE to allow the LONGEST period of time vs. default!
leave membership no. blank, hit send
read all replies; might help you.
also, go to TREEPATROL'S NEWBIE LINKS at top of medical; he constantly adds things!
while there in treepatrol's links, look for the name ART DOUGHERTY; he compiled huge amounts ofstuff about the other 300 illnesses mimicking lyme! i know there is ALS/lyme mentioned in there!! good luck.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Has your friend been diagnosed with any co-infections like babesia?
That may be why she is hitting that brick wall.
Hope she feels better soon.
What a wonderful friend you are.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
BettyG; Uffda! OF COURSE I ought to do a search! I am so glad that I can blame the ketes in my brain on this display of not using my otherwise extremely high IQ.
Thanks for all useful help!
sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Tell them to make sure there taking Magnesium,Cq10,complexB vitamins fairly high doses and 2 hrs after abx. Try minocycline or doxy or tetra & Tindamax or Flagyl. Also Take plenty of water with all the above and get them a LLMD.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
2). Check blood thickness and consider heparin or something similar that will help keep the blood in the vessels flowing and will allow the antibotics to get everywhere at a high enough level to be effective.
You might also try some type of toxin binder and remover that will prevent reuptakes of toxin.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I used to web the AlS/lyme page and be on the ALS/Lyme group when it was big.
Ceftin I have never seen work for ALS/Lyme. Rocephin or Bicillin are what I have seen work- AND Babesia treatment- do a search and go through old posts!!! I only have a minute this am, woke up late and kids already awake so have to leave- get her treated for Babesia- I have never known successful ALS/Lymie who wasn't treated for it!!!! Except one-
may also want to try ledum as supplement has helped a couple ALS/Lymies (cheap at any health food store)
if she is limb onset she has a better chance
ROCEPHIN!!!! is what has most often worked- 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
Definitely check into Babesia -- she has several symptoms of that. The best lab in my opinion for Babs testing is the new F lab in Arizona -- actually looks at a blood slide and doesn't just test for antibodies.
Found this on the web last night when I was researching something else. Haven't fully read it yet. There are some tests listed I don't know what are -- they may be of some help to your friend.
The doc who wrote the article was an ALS/Lyme patient and recently retired as an LLMD due to health issues.
Something else that might help would be to do a bloodtest for Tumor Necrosis Factor alpha -- this is an inflammatory marker which if elevated would indicate that she is herxing.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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tailz
Unregistered
posted
I'm sure your friend has coinfections that need to be addressed - babesia - it heads straight to the liver where it reproduces.
So detox is a MUST before she proceeds with meds, especially with a babesia-infected liver. I have found baking soda baths a godsend.
Pour about 1-2 cups of baking soda in the hottest water she can tolerate. She should soak until she stops sweating. Be sure to drink!
She can do this several times a day. It pulls heavy metals and radiation out, as some experts think electromagnetic fields from cell phones and wireless are the reason these infections persist and allow metals and other toxins to cross the blood-brain barrier.
Google 'The Biggest Biological Experiment Ever' and grab a copy of 'Cross Currents' by Robert Becker.
But I don't have ALS, and about 4 days of antibiotics are all I can tolerate in a clip. Then again, I know I have coinfections that have yet to be treated - babesia, for sure.
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posted
My friend decided to reduce the dosage of Tinidazole (it is a cyst-busting drug, similar to Flagyl/metronidazole), take it only 3-4 days a week and continue i.v. rocephin.
It has been so good for her to hear of others that have experienced severe herxing, and I can tell she is getting more optimistic.
Most likely she is experiencing a herx right now, and just knowing that made a hughe difference. She got some rash developing yesterday as well, and I know I got that when herxing - die off toxins coming out my skin.
I am also getting her an appointment with a LLMD, so things are looking up for her.
The links that have been posted, reading older posts and all the experiences shared has really helped her big time! She is in a terrible state still, but at least not terrified about it. She got some hope so she can persevere with treatment.
Thanks guys!! sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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posted
Seibertneurolyme: That article is good! Real good! Very helpful indeed. thank you!
Posts: 155 | From Norway | Registered: Jan 2006
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posted
There seem to be two kinds of responses to treatment in people who have an ALS presentation of lyme. They get better with extended treatment, and she is lucky to have gotten that much IV treatment, or the herxing makes them worse. Don't know why this happens, some think it is damage caused by the immune system during the herx. For this second group of patients, the tactic now has been to lower the doses, but stay with IV.
I don't know which group your friend is in. Maybe this is a herx and she will recover her strength. If she continues to decline and can see the wasting is increasing and in sync with the herx, then maybe back off on the dosage. Think that only time will tell....got to play it by ear.
Some of the people with this symptom presentation are also on an intracellular drug like the macrolides (biaxin, zithromax). Other people are using bicillin. I personally did not find minocin, even though it is described as neuroprotective, to be any use in preventing the progression of muscle wasting.
Good luck to her. She is fortunate to have a friend like you and a doctor who has kept her on aggressive treatment this long.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Hello, My friend improved again for about a week, then after probably overdoing things + being in a hot tub, she is now feeling bad again. After starting to pulse Fasigyn she also can really tell it is working (i.e. making her herx)
So I really believe she was herxing, and her treatment is still working.
But now she is determined to look into babesia-treatment - and I support her totally on that.
I will get her an appointment with a LLMD, but she really would like to start babesia-treatment in a few days, not having to wait several weeks until discussing this with the LLMD;
could anyone help us out a bit, re continuing rocephin IV AND treating babs at the same time? What medicine has shown to be effective against babs, and at what dosage and for how long?
I understand this will NOT be medical advise, and I will have to do some more research on my own. Thanks in advance for any replies.
sigrid
Posts: 155 | From Norway | Registered: Jan 2006
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butchieboo
Unregistered
posted
I'm comming in on this post late...
If your friend has no llmd...who is giving her all of these antibiotics?
posted
Butchieboo; Her GP gives her the Abx. He is a good friend of the family so that's why he is willing to prescribe whatever she asks for. He also is convinced that her problems are related to Lyme, but he doesn't know how to treat, and for some reason doesn't try to find out either. My friend is managing the IV herself. It is supposed to be injections, but she mixes the rocephin and gets a friend to help her doing it IV. It is a desperate situation, so not something one normally would have done...
Posts: 155 | From Norway | Registered: Jan 2006
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posted
Siggy, Don't know if this will help, but my LLMD told me that only a small amount of nurotoxin is binding with the major nerves, causing the loss of use or strength to move and it gets recycled as the body removes it and it get re- uptaken when it gets in the intestines. Some toxin is eliminated and as long as she has the Bb in her system, more will be created. Killing all Bb will take time and that is well documented. Taking something to remove the toxin may work. Several options there. Maybe the GP can help in that area. He also said that Bb does not like body temps in excess of 104. He thought it would die off faster at that temp. Be careful of the blood cloting factors or fibrin levels.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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posted
My LLMD treats babs for 10 days, then goes to Lyme meds for 10 days....back and forth until the patient plateaus or is healed. Neither illness can get the upper hand then.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
1: Acta Neurol Scand. 2007 Feb;115(2):129-31 Motor neuron disease recovery associated with IV ceftriaxone and anti-Babesia therapy. Harvey WT, Martz D. Rocky Mountain Chronic Disease Specialists, L.L.C., North Circle Drive, Colorado Springs, CO, USA.
This report summarizes what we believe to be the first verifiable case of a significant and progressive motor neuron disease (MND) consistent with amyotrophic lateral sclerosis that resolved during treatment with i.v. ceftriaxone plus oral atovaquone and mefloquine. The rationale for use of these antibiotics was (i) positive testing for Borrelia burgdorferi and (ii) red blood cell ring forms consistent with Babesia species infection. The patient has continued to be free of MND signs and symptoms for 15 months, although some symptoms consistent with disseminated Borreliosis remain.
PMID: 17212618 [PubMed - in process]
To add mefloquine/Larium ????
Posts: 983 | From The sky | Registered: Feb 2005
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posted
I know of one doc who feels that treating one or the other does allow the untreated one to progress, so he treats lyme and babs at the same time, if the patient can tolerate it. Zithromax or another macrolide are used with both. And one way to maybe knock down the babesia parasite load without a big reaction is to start with low dose malarone and work up to higher dose, if needed, or switch to mepron.
Some people feel they have a herxheimer reaction from anti-malarials, but my guess is that it is the antibiotic that is paired with the mepron/malarone/quinine that is hitting the borrelia instead.
Some people seem to respond faster to babesia treatment than others.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
These answers have been a great help! I probably don't have babesia myself, so I've learned a lot (too much?) about it in these past few weeks. It is good to get some hints and tips from someone who knows more and can point me in the right direction.
THANKS!! Lyme-life without Lymenet would have been so much harder!
sig
Posts: 155 | From Norway | Registered: Jan 2006
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posted
on rocephin right now for muscle twitching.... reduced amount of twitching but still not completely gone.. actually got worse after doxycycline, maybe post-lyme syndrome
Posts: 14 | From SC | Registered: Jun 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Check out IV glutathione for lyme disease.
Posts: 1603 | From ny | Registered: Aug 2006
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