Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Miracle notwithstanding.
Brief recap:
I've been infected with LD since 1988. No treatment till 1997.
Persistent problem: weak right leg.
Tests in 2000 showed nothing.
Was off and on oral abx over 6 years. IV Rocephin in 2002 for 2 1/2 months. Relapsed.
Things started to get worse in 2003. Started walking with cane.
Saw LLMD in 2005. Put me on mega abx. Immediately I went to a walker. Got worse and worse. He told me I was herxing. When I last saw him in June 2006 I was in a wheelchair.
Stopped taking abx and got a little better. Downward spiral stopped. Seeing new LLMD who has me on herbal supplements.
Had MRI which showed > 15 abnormalities in white matter. Oliogonal (sp?) showed up in CSF but no Myelin protein. Visual evoked potential normal. Delayed response in lower extremities.
Neuro wants me on anti MS medicine. Compared me to Christopher Reeve. ?!
I refuse to accept that prognosis, as Chris did, always believing he would walk again.
Support appreciated.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Hey Monica,
Ive been thinking about you and was hoping that you were still improving.
You hang in there!
Can you get a second or third opinion? Did he say why you would not walk again?
I was compared to chris reeve too....only it was about my severe herniated disc in my neck...neourosurgeon had me in a neck brace...etc...said i could be paralyzed instantly.
I know it is much different then your situation, but I got other opinions.
What MS meds does he want you to take?
Im sending many many many HUGS your way today!! Keep posting we are here to support you.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
HI Monica,
Sorry to hear about your prognosis.
Glad you're not accepting it!
I had infantile paralysis as a child for only six months because even though the ducks then thought I had polio I had an old timer doctor and he had me get penicillin in the butt every week for six months. I got my legs back...and can only deduce that it was the penicillin shots. Have you tried that german doctors approach?
Diflucan followed by IM penicillin?
If not I think I would suggest it!
At least some IM shots of penicillin for as long as it takes you to get your legs back.
In some cases I'm sure that there is permanent dammage to the body due to TBD infections...however I would'nt quit either.
The body regenerates new cells all the time. Get some supps that help regenerate brain cells as well...like fishoil omega 3 fatty acids.
Keep utilizing anything you can to keep the brain working. Games,PT, etc...
Sometimes the brain and cns need a kick start to keep the lines of electrical signals from the brain to the limbs. Also the brain can redirect other parts of the brain to take on the movement of the limbs... Just keep moving them...
You're much different than Chris Reeves...his spinal cord was severed...yours is not...neither is your brain...the connections are there...the signals are just interrupted...
Ya gotta retrain or train new brain cells to do the job the diseased cells don'dt want to do anymore....Keep fighting and moving...
Good luck and God Bless........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
I have heard of multiple people with lyme that have been temporarily paralyzed who got better as well as others who have been in wheel chairs and have been able to walk again.
You have the Spirit and piece of mind to live a full life no matter what and no one is going to take that from you.
As my husband would say, take a mellon baller and scoop that neuro's comment right out of your memory.
I can't stand hearing negativity like that because I really think it can have a huge impact on you if you let it.
I am glad you are not accepting it. Someone said a few days ago that lyme is incurable. I personally refuse to believe this as well.
Everyday I try to affirm that my body is super smart...heck I am here on this Earth which proves how smart my body is. If it could be born then other miracles are possible.
You will beat this Monica - you already have in your mind. When I say that I don't necessarily mean beating lyme...but beating that voice of negativity.
You are not Christopher Reeve - you are you - and I can't help but think that this neuro brought him up because your strength of spirit reminded him of Christophers even if he wasn't conscious of it.
You are living a full life now despite the challenges and I am sure you will continue to do the same no matter how you are affected by this disease.
You keep keeping on - I wish you miracles from a fellow believer ;0)
Take care...
Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
| IP: Logged |
I see you are in NJ - please email me.
Posts: 374 | From NJ | Registered: Aug 2006
| IP: Logged |
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
that is a load of crap.
he shouldnt be playing the crystal ball--he should be trying to get you functioning to your best ability.
i dont know your story well, but wish i did....seems we have lots in common. I got well with 2 months of rocephin in 2001 and relapsed several years later. but that WAS years later.
I was orginally diagnosed and undertreated in 1991.
Have you gone after the coinfections with force?
Have you tried the cyst busters?
Have you seen the Marshall Protocol article in the Lyme Times? Are you familiar with it? it sounds very promising...low dose abx combined with other important things--and is helping MANY chronic lymies.
I am sorry that doc unloaded his own agenda on you.
Now all you have to do is prove him WRONG!
Posts: 1950 | From New Mexico | Registered: Sep 2001
| IP: Logged |
dmc
Frequent Contributor (1K+ posts)
Member # 5102
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Thank you all.
My LLMD says my BP is too low for Marshall protocol.
I was never treated for coinfections.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
bettyg
Unregistered
posted
Did you or anyone else watch MRS. AMDERICA pageant last night?
1 of contestants had MS for 7 years, in wheelchair, and bedridden. She got better and taught herself to walk. I'm guessing it was Mrs. Conn! She was a blond and that's all I remember.
If the show is RERUN later this week, check it out! Believe it was on WOMAN'S, WE! good luck, and don't ever give you.
IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Didn't see show, but will look for it.
The NYC marathon is full of runners who were told they'd never walk again. Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Don't stick with ANY doctor who takes away your hope. LLMD or not. His negativity will affect all efforts to heal.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
You will walk again if you want to bad enough lord willing and he always wants the best for you.
-------------------- 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.
posted
Monica, I have yet to read anyone state that lyme disease destroys permanently a nerve cell. They do talk of chemical changes at the electron transfer site that blocks transmission. I believe if they had discovered cell death everyone on this board would have been aware of it a long time ago and the study would be well known.
Ask your neuro, if you ever see him again, what evidence he has that you will be unable to recover the ability to walk.
Somewhere on this board is also a long discussion of one LLMD approach where he advises to stop all abx at the beginning of a serious herx. You may want to read and consider this approach.
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
| IP: Logged |
posted
I got sick in 1986 and didn't get diagnosed with Lyme till spring of 2005. I am one that believes that antibiotics really work. I am in a wheelchair too, have been for 18 years.
I have been REALLY sick for the last 20 years. It started getting even worse about 3 years a go. I really think I would have died if I hadn't got the treatment for Lyme.
I am still in a wheelchair, but at least I don't feel like I'm going to die, I feel like I'm at least holding my own. I have even had some days that I feel normal again. It's weird but it kind of freaks me out because I haven't felt normal for 20 years.
Hang in there, and I hope and pray that things will get better for you.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Monica, dearest.
It's so good to hear from you.
File your neuro's comments away somewhere and forge ahead.
It was only last year you were working!
I have read so many stories on LymeNet of people who recovered from being wheelchair-bound! Why couldn't you be one of them?
I know your lyme tests were really positive, so it's not like you DON'T have lyme or your diagnosis was iffy. Some people have an MS response to lyme, and it seems that's what you have.
I don't know why your LLMD never treated you for any coinfections. Most will, when a patient doesn't progress and in fact regresses.
I'd dig my heels in and find an LLMD willing to go out on a limb a bit. I think the LDN is a good idea and it won't hurt your lyme treatment. Since you know you have lyme, I don't think you can afford NOT to treat it in some manner. Bicillin injections as suggested might be good, in conjunction with herbs. Physical therapy. Coinfection treatment.
Blast away, pray, and don't give up. We're not. I'm thinking of you, and sending hugs and hope.
Love,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
What is with these docs who say such things without any supporting evidence? My primary care doc (who ought to know better because she has lyme too) said at my last appt. that my muscle wasting was likely irreversible because I got worse regardless of treatment. She hadn't even re-read my history, didn't remember it, and was impatient for me to leave (it was not a long appt.). People like this doc and your neuro ought to be put in the pillory. Know what that is? It was public punishment in the olden days. Only we could throw pills at them instead of stones.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I am just so moved by all of your words of support and encouragement.
I am attacking my exercises with new vigor. Was able to "kick" my left leg (now the weaker one) higher than ever yesterday.
I am allergic to penicillin since I was an infant, but don't know what my reaction was. Both my kids are too.
Thank you thank you, thank you for being here for me.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Monica, I don't know if you remember my story, but I did not show improvement until SIX months on Rocpehin!!!!!!!!!!!!!!!!!!!!!!!!! And then it was miracle after miracle!!! I SHOULD have been using a cane by that time but I refused to- and I kept falling anyway when I did lean on things- 2 months of Rocephin>? That is *nothing* to MY Lyme. My Lyme needed 9 months. And years of orals...
GET THYSELF TO A LLMD!!!!!!!!!!!!!!!
For god sakes!! If I was you I would be self-injecting underground IV Rocephin in a throw-away syringe!!! I know a mom & daughter who did this together, took 2 hours per Rocephin shot to avoid the burning- but PLEASE!!!!
Be serious.
I think it is crazy to think you have MS. But then again, you are a Lymie, so you are crazy*)! But go to a good LLMD.
-------------------- 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
| IP: Logged |
I will pray for your healing and return of strenght so you will be able to walk again someday. Keep doing those exercises. Has your doc prescribed physical therapy? You'd be amazed at what they can do.
If you say that you were not treated for coinfections, i hope that your LLMD will address this soon.
-------------------- Some day, this mamma's gonna dance! Posts: 199 | From here | Registered: Apr 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey hey Monica... good to see you!
Some suggestions..
1. There is a chiropractic neurologist in NY City. Dr. T. My guess is it would help you to go there. Lyme literate.. and has had good succes with folks.
2. You said.. "My LLMD says my BP is too low for Marshall protocol. I was never treated for coinfections."
MAYBE try the Marsh protocol.. that's the Marsh-ALL protocal without the ALL.. like in NOT using the bent-a-car.. just the low dose antibiotics.
Test and treat PROPERLY for coinfections. You'd feel pretty fuelish if you spent years having something you didn't treat for.. when you could have been better faster.
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
A couple of different notes....
Did the neuro say why he had this opinion? Is there MRI imaging that shows the damage and if so where is it and how much and how long? This would provide a bit more of a hint as to the likelyhood of what he said being fact as opposed to an opion.
Also consider the fact that Lyme is well known (at least by some) to be able to essentally paralyze some of the nervous system with out any physical damaga actually occuring. There are many very late stage Lyme suffers that suffer from near paralyzation to certain parts of their body but who make a near full recovery after treatment. I have heard that there are ALS patients treated for presumed lyme that also have seen this effect. Based on this there is always the question of how up to date the neuro is on the subject of lyme infection. I suspect that he is not and is basing his opinion on things that he knows.... like degenerative brain diseases, for which there are many but no known cause. They basically know how to recognize them but have no idea how to treat them except to treat the symtpoms.
In my past posts (going back some time now), I had often wondered about the drugs that could be developed using the lyme bacteria. It seems to be able to secrete a large number of protiens that have very stong effects on the body. Things like sedatives, site specific paralysis (botox for the brain). Memory enhancement (some have commented on the ability to recall old events while loosing short term informatio.
Then there are the more sinister uses such as inductiuon of pain...with no detecatability but I won't get into that one...
In summary, there is such a poor understanding of Lyme and it short and ling term side effects that I would question anyone that makes a claim that this or that will never return. In addition, even if there is overt and observable (via imaging) damage to the CNS, the odds may be against you but many people, through perseverence and work have been able to recover a lot of the lost functions. In this regard, you can think of the CNS as a plumbing system. If a pipe gets broken,the flow does not reach it intended destination, however, there is usually a way to reroute the flow but the flow may not be optimal so only a trickle gets through. The exercises basically bolster the rerouted plumbing, sometimes to the point of being able to handle the same flow as the original.
Good luck and the only way to be sure to fail is to give up.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey Monica...
Keep using those limbs...even if someone else has to move them for you! Keep the signals alive from muscle to brain...
Hey there Dave1097
Do you always read a post and then regurgitate what was previously stated by other contributors...
You dave might want to read Monica's initial post which refers to white matter in the brain etc...before asking that question....
Maybe you have really bad short term memory problems... by the time you get to the end of a thread you forget what you just read!
If so.....I appologize!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Fingers crossed for you Monica
btw: My Neuro told me that Lyme tests are reliable & that I had a chemical imbalance. When I showed him my CDC + test after treatment he said, "this is so over my head."
Posts: 2451 | From Lyme Central | Registered: Aug 2001
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
For the benfit of anyone that may be confused or did not understand what I tried to say in my post, let me explain.
What I wanter to say was was how MUCH and how LONG and WHERE on the MRI. There is a very good reason to ask the Neuro this question. Basically the ogli bands and a set of SPECIFIC MRI results STRONGLY supports a MS diagnosis, Lyme might be part of the picture but these two observations result in a CONFIRMED MS DIAGNOSIS even by the most conservative guidelines.
I mention SPECIFIC MRI findings as MS SPECIFIC lessions in many cases have specific patterns that a radiologist is trained to recognize. If these specfic patterns are not observed the exact cause of the lessions could be (and should be) called in question, particularly if there is a known CNS infection like lyme (which by all accounts NEEDS antibiotic treatment to be eliminated to non-troublseom levels). It is very important to properly consider these factors in trying to arrive at a prognosis....as well as treatment.
In terms of specific brain lesion locations what is also important to figure out is what type of MS it MIGHT be IF it is MS. MS can be remitting -relapsing or non remitting, damage may be self correcting or permanent. The MRI will lend a lot of support to what type it is and will SHOW where the damage is. Different parts of the brain obviously do different things and one can only assess the probability of a prognosis being correct if one understands exactly how the prognosis was arrived at.
It is for these reason that the location and history of the observation is important. If it is in the area of the motor track or on some of the brain stem or spinal cord and has not changed for a long time or enhances with contrast then the prognosis is not as good as if it where someplace else or shows signs of cyclical recovery.
Sorry to everyone if you find some of my posts rather blunt and perhaps not in keeping with the general concensus of the frequent posters on Lymenet. In most of my posts I don't try to add false encouragement to the person in distress, I instead strongly believe that if one wants the real score they need to see both sides of the story, and if they don't, they need to know how to get them. Nothing is black and white so seeing both is critical.
As a result, I instead try to offer some background data (sometimes based on opinion, sometimes based on experience, sometimes based on what I have learned) that the person can hopefully use to better understand their predicament and perhaps find out more of the answers to the questions that they that they need to ask to come up in order to resolve their concerns. These are all suggestions and are in no way medical advice, they are just ideas or leads that came be followed if someone wants to.
Others thinking good thoughts or sending best wishes might help with moral but it will not solve the problem, however, asking the right questions and finding the answers to the tough questions can HELP solve the problem and resolve uncertainty, which at times can be far worse than knowing what the future will hold with 100% confidence.
I hope no one is offended by what I say as no offense is intended.....
I hope what I have just said makes sense to some and is not a "regurgitation" of what others have posted.
And Mr Tony, the next thread in this post if for you.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Well Mr Tony Z.. apology NOT accepted.
IF someone is critical of someone elses post then there is correct and incorrect way to make the objection known. Use a bit of common sense.
As you likely know I have blocked PM's from you due to inappropriate messages in the past.
BASICALLY I DON'T WANT TO TALK TO OR HERE FROM YOU AT ALL. PLEASE STOP BOTHERING ME.
Do everyone a favor and if you don't like what someone writes, just ignore it or if that is too hard, go beat your wife or kick your dog or something or better yet go the the alt.sci forum where everyone is rude and nasty.
We are all a bunch of sick people here and extra aggravation is not why people come to this site. SUCH AGGREVATION IS NOT APPRECIATED.
Thats all I have to say on this subject.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey Davey1097...
You probably never noticed but I have never sent you any private messages so I would'nt know that you blocked them!
Besides...that WOULD be a way of contradicting or criticizing your posts in a less than public manner...
I was just making a comment on an observation I have made over the many times I have read your posts...
Which as you refer to AGGRAVATION...not being needed by sick people...
Your longBig blocks of rhetoric IS annoying and aggravating to some of those that have neuro lyme and difficulty reading such blocks of words.
I and Betty G have told you this...many times...perhaps you don't get it!
The very first sentence of this thread says that she had an mri...and you seemed to have missed that...
Then you go on to state what was already posted and more of the obvious...
You seem to do that a lot...you also seem to miss spell a lot...
Which could be a lyme neuro thing...
If I read my troll alert stuff accurately...this COULD be an indication of just who you are and what you're about...
No...I'm not accusing you of anything/ ...just making another observation and commenting on same...
So don't get your knickers in a twit!
I won't comment further cuz I REALLY don't care for you either...and trying to help correct someone who OBVIOUSLY does'nt take constructive criticism well is an exercise in futility.
zman
[ 21. November 2006, 09:40 AM: Message edited by: lymie tony z ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
posted
Neuros dont understand Lyme. So their prognoses are no good.
Your neuro may be seeing things on your MRI and other tests.
But if your walking difficulty is due to Lyme, you may or may not get worse.
I was unable to walk and in a wheelchair, due to pain and stamina. Now I walk 45 minutes, was able to take a plane, drive, do errands, etc.
My daughter was unable to walk, think, talk, swallow, spell, write, or take care of herself. It mimicked a neurodegenerative disease. Now she drives a car, finished high school. She was a cheerleader.
However, now she is herxing like crazy, her first real abx tx with rocephin, and is worse, having seizures again, but Ithink its getting better.
I have seen people in my doctor's office with Lyme who have been wheelchair bound for years. They look like they have ALS or MS but it is really lyme. So there are cases where people are very impaired for many years.
My advice is don't believe your doctor. What usefulness can this info be to you? And he has no crystal ball. Beliefs can become realities. I would rather encourage you to paradoxically accept what your situation is, and also dont give up and keep treating with a good LLMD.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
Now kids, let's play nice. I appreciate everyone's attempt to help me.
An update:
My MRI as read by the radiologist showed over 15 abnormalities in the white matter. His finding was that this was consistent with damage from LD.
There were oligoconal (sp?) bands in CSF that can also be caused by LD.
SO ALL MY POSITIVE FINDINGS CAN BE CAUSED BY LD although no LD was found in CSF.
I saw my LLMD yesterday. It was my fifth visit to her.
Previously I saw an LLMD who watched me deteriorate from walking with a cane to being wheelchair bound from 3/05 till 6/06. He had me on rather high doses of abx during that time and kept telling me I was herxing.
My new LLMD and I discussed LDN. I will be off painkillers for the next 8 weeks at which time we will address the LDN issue again.
In the meantime I am trying to get an appointment with the Lyme Research Center at NY Presbyterian.
I am continuing with my PT and have had much recent good fortune with my at home exercises. Able to get my leg higher and higher while kicking.
My hair is healthier and the fact that I am able to eliminate codeine based painkillers makes me think my body is flushing out the toxins.
All thoughts and prayers are greatly appreciated. Thank you for spending your time trying to help me.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
A quick note:
lyme bacteria or antibodies in the CSF is reportedly a rare occurance, even with confirmed CNS LYME. This runs contrary to other CNS diseases but is fact and is reflected in ILADS as well as IDSA and guidelines written by Steere. While Lyme is know to be able to enter the CNS, the lessions that are seen may be the result of blood flow issues - vasculitis cause by Lyme. One way to see is to do a spect, it may be different now that you have been under treatment but with a particular spect scan you can see the areas of low blood flow. There have been reports of stroke that have resulted from vasculitis caused by tick bourne diseases so the degree of flow impairment can be very significant.
I have not heard the oglio bands for MS are present with Lyme, although I do know that there are some other protein irregularities such as 14-3-3 that can show up (WAS considered a marker for CJD, but now recognized as an indicator of cellular level damage in the brain). I would be interested in the source of that information as I get asked rather often about the possibility and would like a reference to direct these people to.
You might want to do a search on Dr Shoemaker (I hope I got the spelling correct). He has written a few articles on the ability of certain binding agents to absorb the neuro toxic residue from the lyme bacteria. I believe he used Questran (which is normally used for high cholestorol)and found that some people that suffered paralysis recovered very quickly after taking the stuff.
As to the theory why, it is know that there is a surface protein from Lyme that inteferes with the signalling between neurons. One has been found and there might be more. If this protien is liberated as a result of being killed, It is thought that the body has a limited capacity to eliminate these agents and that they are stored in fatty tissue, and more impotantly is re-absorbed in the Lower GI resutling in an increasing toxin load. The use of questran, is thought to absorb these agents before they can get re-absorbed by the gut thus opening the pathway for its removal.
If this model is correct, it may explain your increasing symptoms. Ie, Use of ABX causes more fragments to be generated which build up and impairs the brain unformly but the biggest impairment would appear where there has been past damage.
Also in the this regard, I read somewhere that while the MS lessions heal, there is a residual problem where the sheath is not fully reconstituted, possibly resulting in a focus for other problems that affect the CNS.
I hope some of this is of some use. Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
| IP: Logged |
Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
The lab results on the CSF came with the disclaimer that other illnesses may elevate the IgG. Neurosyphilis is one. I made the leap that it could also be caused by any spirochetal infection.
There was no myelin protein in the CSF.
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
| IP: Logged |
Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Get tested and retested for co-infections and/or find an LLMD who will treat you for them without postive blood tests. The chance of you having only lyme disease is close to zero as proven by all of those years of ABX and the poor response.
Co-infection testing saved my life and got me from being almost unable to walk and facing the prognosis of an ALS diagnosis to being 95% of my old self. I've been on co-infection specific ABX since 8/04, progress has been very slow with many setbacks and required PT but I'm almost back to the way I was. You have heard this all before from me.
Don't give up, be aggressive and go with your gut. Keep looking for that doctor, the one out there that will save you.
Neuros are a waste of time, just delete from memory what your we told.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
| IP: Logged |
posted
Hang in there, I was told I had ALS - 8 years ago. Do you know any ALS patients that would have improved? I didn't believe the ALS diagnosis, went to another and diagnosed with MS. Wasn't buying that especially with the tachycardia. Finally diagnosed with Lyme (lot of other things before that). Follow your gut and get a couple more opinions.
Posts: 298 | From Maine | Registered: Jan 2004
| IP: Logged |
I've been to several neurologists. One thought I could have brain tumor. One thought I had pituitary tumor. Two thought I had MS. Last one said I had brain damage but did not know what caused it.
Anyway, it's been noted that ms could be similar infectious process to lyme.
Seems worth it to be on atb.s and herbal atb.s like garlic,and smilax.
Hope your leg gets better. My focal dystonia did.
Posts: 290 | From ohio | Registered: Dec 2005
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Smile]](smile.gif)
Some day, this mamma's gonna dance! 
![[Big Grin]](biggrin.gif)
![[Razz]](tongue.gif)
zman
Printer-friendly view of this topic