MS diagnosis 12/15. 22 brain lesions, Rebif treatment then 2nd opinion!!

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Archer16
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/17/2017 9:52 AM (GMT -6)   
First off, I'm new here, so I hope I'm doing this right! I was diagnosed with Trigeminal Neuralgia 2001, after being told by several Drs that it was "migranes", "maybe it's where your glasses touch your temple!" "Stress" (my mom passed away the year before)
After my diagnosis, I started many different meds, and finally found one that I could tolerate and actually worked! However, I knew something was wrong. I had on and off issues for years and Dr's telling me it was depression, which I suffered from since I was a teen. So I knew it wasn't my depression! Years pass, my focus is on my 2 kids, and in 2009 my dad was diagnosed w/ stage 4 NSC Lung cancer that had metastasized to his pancreas. So of course my full attention isn't on me it's on my dad and my kids. Drs gave my dad 12-18m. He fought with a smile and an amazing spirit for 4 1/2 yrs. April 3, 2014,he passed.just over 3 was later on April 28, 2014, an F3 tornado hit our home while myself and kids were home. We were not physically hurt but our 1840's log home was. $200,000+ in damage, 2 totaled vehicles and our 1840's barn was destroyed. Clean up, insurance claims, and finding a place to live while we repaired our home began. Less than a month later, in May (on my daughter's Senior Class Day) my 11yr old son had to have an emergency appendectomy!!! Surgery/Recovery went well. My daughter graduated the NEXT week! All of this while trying to sort through our life that was soaked, broken from the tornado! !
So, of course, I go into "auto pilot" focusing on the issues we were facing. My health was not even on the radar in my mind. I had no time to think about it! I didn't even have time to fully grieve the loss of my dad!
I am not a "girly girl" & have always done " man things" as my son likes to say. I do carpentry, build furniture, havey OWN chainsaw and if you tell me I can't I will prove I can! So I went to work on the house, my husband as well, doing 80% of the rebuild ourselves we were able to get back into our home in 6 months.
During all of this, of course my depression worsens, my body hurts, I'm losing weight, dizzy......I chalk it up to overworking, stress, not eating and drinking like I should..... by the summer of 2015 I KNEW SOMETHING WAS WRONG! Finally get a Dr to do a MRI and was told it was clear. Wasn't having it! I to that same mri to an MS dr and he showed me 22 lesions on my brain. Now begins the MS treatment. Started Rebif and roughed it out until the week I was to reach the max dose and thought I was going to die!!! Dr said the meds would make me ill. But I couldn't take it and I couldn't take the dr shrugging the severity of it off. So I go to a major university hospital 2 hrs away to see another MS specialist. After 2 hrs of poking and proding he asks if I have been tested for Lyme. Of course my answer was no. He said my lesions were not all typical of MS. I tested positive for 4 bands, (to this day I still can not get an answer as to what bands they are!)
Go to another dr for treatment, go rounds w/insurance and finally get PICC line placed 2/2017 for 4 weeks. Told I have late stage chronic Lyme disease & Lyme arthritis. And that I would ALWAYS have it
Home health nurse, 5 grams Rocephin, heparin and saline flush everyday 4weeks. Depression improved, only slight herx, and felt better than I had in years. 4weeks later PICC line removed and the Dr has the nerve to say, "You no longer have Lyme." After telling me I would always have it! ! Dr did blood work and of course it was negative bcz I had just been on 5gr Rocephin for month!!

Now I'm at a stand still!!
MS dr won't treat MS if I have lyme and can't find dr to treat the lyme that knows a dang thing about it! !! Nt even sure I have MS or my lesions are the cyst form of the lyme!! UGHHH!
SORRY for the novel but it's been a long road and now I'm at a dead end!
I have been using herbal supplements and they seem to help some but still have chronic fatigue, cognitive issues,
Facial drooping slurred speech, vision trouble, air hunger, low blood pressure, weight loss and I am not physically abe to be as active as before I can't lift lumber to build furniture, takes 2-3 days to completely clean the house.......
I'm just at a loss as to what to do!??!?!?!
AND I AM SICK TO DEATH OF PEOPLE SAYING YOU DON'T LOOK SICK AND JUST PUSH THOUGH IT! ! !

Any advice would be so very appreciated and welcomed!! It helps to know that I am not alone in my struggles and frustration.

My thoughts and prayers go out to all who are suffering!!

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 12/17/2017 10:04 AM (GMT -6)   
Sorry to hear all of this.

If you tested positive on 4 bands, it is pretty likely you have Lyme.

Is there any way you can keep calling them to find out what the bands are? Even if that means calling them every day? Regardless, the odds of all of those bands not being Lyme specific is very small. There really aren't that many bands.

You mentioned chronic fatigue and cognitive issues, those are my main Lyme Symptoms.

Facial dropping sounds like Bell's palsy (very common in neuroLyme)
Vision trouble sounds like Lyme too.
Air hunger I believe is often a co-infection of Lyme, I believe it Babesia but someone please correct me if it's Bartonella.

So yeah, I'd start Lyme treatment if I were you. Even if it's just to see if you will have a herxheimer reaction to the antibiotics or herbs, that by itself can often be a confirmation that you have Lyme.

Psilociraptor
Veteran Member


Date Joined Jul 2016
Total Posts : 1353
   Posted 12/17/2017 10:20 AM (GMT -6)   
I don't want this to come off the wrong way, but you actually have it pretty good! 4 bands? A doctor willing to say you have chronic Lyme? Hot dang!! I was told "Lyme doesn't exist in the south" after my screening test came back positive LOL. But yeah it stinks pretty bad doesn't it? I ruined a good few professional and personal relationships with this disease because I think people expect more out of me based on how healthy i "look".

Anyways, I don't know if you stated where you're from but it's kind of hard to find on that wall of text. So might be worth stating again so some of the mods can help hook you up with an LLMD in your area. If you're not wanting to go that route, can't afford it, want to do some complementary therapy, or simply want to get a head start on treatment while you wait for an appointment Stephen Buhner has written several awesome books on treating Lyme disease herbally. I have personally used this approach exclusively and it's helped a good bit. I've talked to several who have been in full remission from it. And Stephen makes a pretty good case in his books for why herbalism is promising in complex diseases. If you want a distilled version to get started buhnerhealinglyme.com has the basic protocol. Though I really recommend getting the books in the long run because there is more to play with and customize. The one that's helped me the most is japanese knotweed. Oh and make sure if you get the book that it's the 2015 version of healing lyme and not the 2005

Missouri
Regular Member


Date Joined Sep 2017
Total Posts : 397
   Posted 12/17/2017 11:42 AM (GMT -6)   
Lymesick - I have to disagree with you. I don’t think Archer should waste too much energy figuring out which bands. Even if all 4 are not ‘Lyme specific’, it does not rule out Lyme. I had 4 bands on my IGG all were ‘non-specific’. 30, 41, 58, 66.

However if a positive result is needed for insurance it may be useful.

LymeSick 🌟
Regular Member


Date Joined Aug 2017
Total Posts : 234
   Posted 12/17/2017 11:47 AM (GMT -6)   
Hey Missouri, I actually agree with you, I just mentioned it because the test has already been done and it might give some peace of mind. The rest of my sentence actually mentioned that the chance that it's not Lyme is very small.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33899
   Posted 12/17/2017 12:30 PM (GMT -6)   
Hi Archer - welcome!


I posted on the other thread - you need a LLMD. A LLMD wouldn't stop treating so soon.

Chronic lyme takes many months to years of treatment.

Start a new thread: "Looking for LLMD in/near______" and fill in the blank.
Then enable your email option so members can send you names privately. We don't post the Dr.'s names for their protection.

You can also email me - and I may have some options in your location.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/17/2017 12:48 PM (GMT -6)   
Archer I'm so sorry. It sure sounds like lyme is still residing in you. I did the Stephen Buhner herbal protocol and I have been in remission for over a year.

I have no idea if I would test positive for lyme or not. I just don't throw my money away very well. What is more important is how I feel. I have no symptoms and that is what it was all about.

It is long road when treating lyme. I am a driven person and to have to do something for a long time..... well, it really tested my patience.

I had never been a very sick person and so to be so sick for so long and not seeing results in the first day, first week or first month.... I became a cry baby. It was emotionally (and physically) hard to maintain my jovial, secure, positive, self-sufficient womanhood.

I made it though. You will too. There are many options for your treatment. Make a pro and con list and you will figure out which is right for you.

There is no perfect plan to eliminate lyme. I have read of so many people healing and the consensus is that there is no silver bullet or perfect plan.

Even I tried one way and it didn't feel right, so I tried another and eventually I did a combo of 2.

Glad you found us and sorry about your troubles on top of health issues. I cannot even imagine.

Healing hugs,
Annette

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2299
   Posted 12/17/2017 3:07 PM (GMT -6)   
Hi and welcome to our forum Archer16,

Keep on fighting, you have been through hell, and don't worry about those Md's that cant do their job and figure all this out. You are strong and are a doer/go getter. I'm betting you will get better and get your life back.

If your not treating now I would begin a.s.a.p. It does sound like you have Babesia too(air hunger).

You also may have other co infections. A good LLMD can clinically diagnose and treat you based on the symptoms.

Many symptoms can overlap between Lyme and all the co infections, it can be confusing. On our new to Lyme thread there is useful information about that and also detoxing which is very important.


Books on herbals are Stephen Buhner 2nd edition"Healing Lyme", Buhner also has co-infection books.

Dr. William Rawls"Unlocking Lock"

Other treatment options are: Jerrnigans
Beyond Balance
Cowden Protocol

Others may be along to suggest others.

Hang in there and your home sounds awesome and I am so glad you were able to rebuild. I am also very sorry for the passing of your loved ones and all the suffering you have been dealing with.

You are not alone anymore, we are here and we understand.

Take care, Jo
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