Quick Update!!!

[drsdonthelp]

Hello my very first forum family!!! I have missed all of you very much. I do check up here daily, but because my search for an answer was pushing me further away from a MS diagnosis, I started to check out the Lyme forum which is,, by the way,, a pretty awesome place too... :)

I had my 2nd LLMD appt. today, it was my follow up for the 30 day dose of Doxy with my daily log of symptoms. I am now going to be treated as clinically diagnosed Lyme Disease...... I cannot believe I finally have an answer... My doctor believes that since taking the doxy I have had improvement (left hand tremor is easing up) and also had some herxing, (my body feels like a battle zone, muscle twitching, extreme fatigue and my joints feel like at some point they are going to break off and separate from my body. I feel like I have a fever, but my temp. is 97.1, which is seen in lyme disease. Just now,, I tried to take my nightly dose of medicines and gagged them right out into the sink, I couldn;t do it... I had to pick them out of the sink and try again. Ugghhh, it was disgusting,,, I had a hard time swallowing them because of gagging...

anyway, I will be starting on Mepron and Zithromax for the next 30 days.... I am scared!!! I am happy that I am finally getting treatment and that I have such an awesome dr. but I am still scared....I think I am going to have to change my moniker to NEWDOCDOESHELP!!!!!!!! LOL

Love to all, and hope everyone is doing well :)
Pam :)

[drsdonthelp]

Hi Lulu!  I will try to keep as positive about this as I possibly can. It's going to be tough on my two little ones though. They are already feeling it, when I say, mommy doesn't feel good right now and then I pass out sleeping!!

I didn't realize in the beginning of this process how much Lyme and MS are so alike and the reason I kept thinking MS was because my blood tests did not show anything (No Surprize there!)  It's definately a determination to figure out what is really happening and to not just have these other doc.s make you think your nuts, - go see a shrink!!

I now know why you guys kept telling me to have an "Open Mind and that it isn't always MS",

The sad thing is, ,,, the diseases are soo soo similar, but the way you are treated is in the toilet. Insurance, and costs to get better for lyme is so  much harder to treat than MS. Lyme isn't as easily accepted as MS is.. but they ruin alot of you body in the same kind of way

I will always stay in touch and I will definately drop in alot to share my experience with newcomers as long as its welcomed.. I know sometimes not everyone is willing to accept a different answer or to be "Pushed away" or so they think.

Please take care, and hope you are doing well!!!
Big Hugs, and thanks for always being here for me, it is very much appreciated!

Pam

[Lulu54]

Pam, I know just a small bit about herxing and that it can be horrific.  Just keep repeating that in the end it is worth while to get rid of all those cooties.  It is great to hear the LLMD is on top of your care.

Please do us the favor and pop in every once in a while to help remind others that it isn't always MS.  We try to get that message across that its important to stay open to the possiblities but sometimes it feels like that all the people are thinking is MS.  

Thanks for the update and stay in touch.
Lulu

[drsdonthelp]

Hi, thank you,,,,, and yes,,  the treatment can be hard on the body especially if the bacteria is having a die off in which LLMD's call it "herxing". They say its a good sign even if it makes you feel bad, because that means the meds are working.

I believe I am considered in the chronic late stage Lyme Disease with  two co'infections, Babesia and Bartonella. So the treatment can be long and the herxing can either become intense,,,,,, or I pray, not too too bad.

Pam :)

[beachcomber13]

I am glad that a doctor finally did help!

It sounds like the treatment for Lyme Disease is pretty hard on the body. I wonder why the antibiotics make you so sick. Crazy!

I hope you feel better soon. Did the doctor say how long you will feel sick?

[drsdonthelp]

Thanks so much! It's been a long 4 years of searching!! It's almost like my surgeries for my eye disease started to bring out the "little critters" and that's what got this whole ball rolling. It definately made me think of my past episodes and helped me realize how all of it fits together.

I just recently had to go to my nephew's school to be a guest speaker for his health report!! He did his report on Lyme Disease. I think I opened up alot of young eyes in the classroom and it felt so good to help these young kids realize the importance of "paying attention to what your body is telling you" because treating it early can save alot of the "aftermath" of this disease.

So far I have been on doxy for 30 days, my new med is on order at the pharmacy and it costs $50.00 just for the 21 days and I have to call my dr. to write out another script for the remainder 9 days at another $50.00.. Getting your health back means going bankrupt!! My zithromax was 10.00, so for this month of treatment , it's costing me  $110.00.

I am feeling sick still, as far as the chills,  low grade temp. and body aches.

I worry of what's to come next! I hope its not too bad.

Hugs, Pam

[anon07072023]

Pam, thanks for giving us an update.
I'm happy that you really like this doc, and you have a definitive diagnosis now. You can start moving forward, which is very good news.

I hope all these new meds help you!!  

Good luck!  :-)
Kelly

[Deb61]

I am happy that you have answers and have found a doctor that you can trust.  Now since you know what it is, you can fight the battle.  I bet the taste of the medicine is very unpleasant, but do what I do with every Copaxone injection and think of how this weapon is fighting the battle for you.

I do hope you pop in again from time to time.  I would love to hear other updates.  

Love to you back,
Deb

[tingletingle]

Pammy spammy,

A bit congratulations to you on finally getting the dx. What you have endured has tested you both physically and mentally but you persevered to the end. Well done.

Blessings, hugs and kisses
Alex