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CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 6/16/2010 10:46 PM (GMT -6)   
So I need a bit of advice and a little bit of a vent! Through emails and researching ive concluded there is no way, no possible way i will be able to afford travelling to the states for a lyme diagnosis through a lab, not to mention getting treated. Three days ago I saw my rheumotologist and he diagnosed me with rheumatoid arthritis, and put me on plaquinel, another medication that i can never remember the name of, as well as methotrexate, immune supressing drugs. Wow, have you seen the side effects of these drugs? I wont go into it, but being on them I need to get blood tests every 2 weeks to make sure my liver is functioning properly. I have had the prescription for over week now, and i just CANT make myself fill them! I am so scared, in my 26 years i havent even taken a handful of tylenol all together (aside from celebrex ive been taking for a few months, i thought that was bad!) nevermind heavy duty immune supressing drugs, i just cant wrap my mind around it. Its not that i dont want to get better, its not that i dont want to be able to clean my house and exericse again someday, but my gut is telling me to run away from these drugs.

So, sorry for the novel by the way but, my main concern is obviously that i believe its lyme induced. Seeing as how the array of symptoms ive experienced including the arthritis have all happened within a year of getting bit by a tick and showing the bullseye rash. Im scared to leave the RA untreated, but even more scared to take these drugs supressing my immune system if it is in face lyme disease, i cant imagine how that would leave me feeling. The worst part is the self doubt, I feel like i dont know anymore even though i DO, its hard to trust yourself when youre supposed to be trusting a dr with 30 years experience in rheumotology.

I feel like there is evidence in not only my symptoms, but also the reactions i have to saunas and detoxing and such. I think I am going to see a dr here in canada, who treats patients using the marshall protocal, anyone have any experience with this? Its the cheapest option, and seems to make sense. Im worried about NOT taking the drugs that have been prescribed, but i suppose in a few months depending on how my body reacts to treatment i will know if i made the right choice? I hope? any input would greatly appreciated.

CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 6/16/2010 10:49 PM (GMT -6)   
how my body reacts to the lyme treatment that is ^

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/16/2010 11:54 PM (GMT -6)   
CMRB,

Plaquenil seems to be the least toxic and is not an immunosuppressant, although Methotrexate is. It does seem like many people take this combo of meds. Why don't you go to the Rheumatoid Arthristis forum and talk to members there. Maybe they will be able to ease your mind a bit.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 6/16/2010 11:55 PM (GMT -6)   
Patti,

You can say things like, "I'll pray for you". If you look over the rules, that is allowed.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 6/17/2010 1:14 AM (GMT -6)   
Yea I was thinking of just getting the plaquenil filled actually, its the methotrexate that has me worried. I have also not tested positive for rheumatoid factor, which gives me a little hope too, he diagnosed me on a symptomatic basis considering i cant walk sit or stand without being in extreme pain but from what i can tell thats a common symptom around here! Id really like to know if anyone has any knowleadge or experience with the marshall protocal, I will continue all the naturopath treatments as well ive just slacked off feeling a bit hopeless and sorry for myself after my visit with the dr but I'm going to be more diligent for sure, because i was seeing results. thx for replying

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/17/2010 6:37 AM (GMT -6)   
I realize it isn't cheap to go to an LLMD for treatment and get tested, but you need to consider the alternative. You have no idea how much this disease will take control of your body and take you through the pits of hell by not treating it appropriately. Those medications for your arthritis is just going to be a bandaid and mask the pain, if they even do that.

As far as the Marshall Protocol goes, I'd suggest you do a google search on this one. In my opinion, it's the worst of all protocols out there. People have gotten very sick and even died on this protocol. I wouldn't recommend this protocol to anyone. You'd be much better off doing natural treatments than going on this protocol.

There's a home protocol you could follow that involves taking homeopathic botanical/herbal medicines that could be very good for you and it's not that costly. You'd have to buy the book to go on the protocol. The book is "Beating Lyme Disease" by Dr. David Jernigan. You can get it on his website at www.HansaCenter.com. Several people have gotten well doing this protocol. I'm on it now myself (although I did go to the Hansa Center for two weeks) and doing very well on it.

Gary

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35695
   Posted 6/17/2010 2:59 PM (GMT -6)   
Hey Gary,
Even Dr. J's protocol is expensive to a lot of people. It may be one of the least expensive - but it is something that I cannot afford to start at this point. Please be more understanding of people's circumstances.

Peace
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/17/2010 3:55 PM (GMT -6)   
Traveler,

Whoa, not sure where that came from but insinuating that I'm not being understanding towards people's circumstances is so far from the truth that I don't even know how to respond. Since it appears more of a judgmental comment (towards me) it's probably best I don't respond to you at all.

I will say this though, I think everyone here is an adult and has the ability to speak for themselves. And since my comments weren't directed towards you, maybe it's best you share your thoughts and input with people who seek advice, and I'll share mine.

Being critical of what people say to others who are seeking advice serves no purpose whatsoever. I don't always agree with the advice some people give to others here, but I don't feel it's my place to interfere or be critical of their advice, I simply give my own and the people who come here can come to their own conclusions.

Gary

lylaso
Regular Member


Date Joined Jan 2010
Total Posts : 57
   Posted 6/17/2010 7:49 PM (GMT -6)   
Hi,

On one of the other forums I belong to there was a member there who was seeing an ID doctor in Canada. This ID doctor was very open to the possibility of lyme in Canada. He also attended a conference and I was surprised that he told this member that you don't start seeing results of treatment with neurological lyme until about 5 months in. He also said it could take up to 22 months to be symptom free. So, while not technically a LLMD, he seems to be the next best thing.

I'm not sure where you are in Canada, but if you shoot me an email I'll try to get the information to you.

CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 6/18/2010 1:02 AM (GMT -6)   
I really appreciate all the advice given, thats why i post here! GWB, I understand what youre saying, I did some more research and unfortunately i agree with you about the marshall protocal, thanks for bringing it to my attention before i wasted anymore time considering it, im disappointed but, better off going a different route. I am going to call someone tomorrow that may be able to give me an llmd in canada so i hope to god it works out! I will be ecstatic actually lol.

I think everyone here is pretty understanding of peoples circumstance and generally here for support and encouragement, I know that it has definitely been a positive uplifting resource in my life since i have been suffering this disease, and i quite possibly would never of had the chance of becoming well without it.

I can relate to the frustration financially everyone feels, (shelter and food for our families vs medical costs? talk about being between a rock and a hard place) but i can also understand the frustration of trying to bring hope and wellness to those who arent able or willing to put themselves first financially, because health is by far the most important thing in life. We're taught to believe that as long as we have our health, we have everything to be greatful for and that money shouldnt matter. So its kind of a slap in the face when you become sick and the very thing that shouldnt matter is the only thing that can help you. Its infuriating that in our society, ANY person should have to live with a disease that is treatable because they simply cant afford treatment. What an eye opener, in a way i feel having to deal with this has made me a little more understanding and wiser. (im blonde, i need all the wisdom i can get lol)

Anyways, Im going to skip the methotrexate, take the plaquenil, get myself a copy of dr jernigans book, and hopefully get in touch with this llmd! thats my plan for now, one day at a time i guess, think ahead too far is way too overwhelming. Thanks all for responding

JCat
Regular Member


Date Joined Sep 2007
Total Posts : 70
   Posted 6/18/2010 11:49 AM (GMT -6)   
Hi CMRB,

I too saw my Rheumatologist a few weeks ago who insisted that I must start taking the methotrexate. She scared me to death. That is one drug I do not want to take ever. Plus I have read that it is really bad to take if you have lyme. Anyway after that visit I decided to see a naturopath. The cost was really not that bad. I live in Vancouver B.C. The naturopath sent my blood to Igenex labs in the states and I got a positive on Lyme. I was then referred to an MD here who is willing to treat with antibiotics providing you have a positive lyme disease test even if its from the states. So I am finally being treated and I am starting to feel alot better. I have a long way to go and I know things could get worse before they get better but it feels really hopeful to finally be getting some help. Their is a wonderful naturopath in Steveston you could call if you live in the Vancouver area.

nasalady
Veteran Member


Date Joined Sep 2009
Total Posts : 1176
   Posted 6/18/2010 11:59 AM (GMT -6)   
Hi all,

As you can see from my signature, I have multiple autoimmune diseases (AI disesases) plus Lyme and I HAVE to take prednisone and Imuran (both are immunosuppressants) in order to protect my organs from my own immune system. My immune system has already seriously damaged my liver.

If you're in a situation like mine, the trick is to get the AI diseases under control and then reduce the dosages of the immunosuppressants to the lowest possible levels so that your immune system can start fighting the Lyme disease.

Good luck to you!!
JoAnn
Lyme Disease, Babesiosis, Ehrlichiosis, AIH, Hashimoto's, lupus, fibro, RA, celiac disease, asthma, psoriasis, Raynaud's, hypertension, osteopenia, sleep apnea, RLS, GERD, DDD, L3-4 and L4-5 radiculopathy -> severe lower back pain, cubital tunnel, tarsal tunnel, Doxycycline, Zithromax, Prednisone, Imuran, Plaquenil, Lyrica, Cymbalta, Levothyroxine, Atenolol, Cozaar, Zyrtec, Fosamax, Albuterol, Prilosec, CPAP

autoimmunediseasesgfliving.blogspot.com


PacificNW
New Member


Date Joined Jun 2010
Total Posts : 13
   Posted 6/18/2010 9:18 PM (GMT -6)   
Gary,
 
We have been reading this forum for a couple months and decided to join the other day.You have been an inspiration to our family.  Your story is remarkable and thank you for sharing it with all.
 
We are looking forward to getting our 13yrs old son, off to the hansa center in a few weeks.  We have been working very hard to financially be able to afford it. Such as fundraisers for our son and much more.  We have spent so much money and have had no success. We bought a rife machine and of course, all the expenses of a llmd.  We feel the hansa center is the right choice.  We have read Dr. J's book and it makes so much sense.  My son is so eager to go!
 
I will keep you posted of his outcome!
 
Thank you again.
 
 

CMRB
Regular Member


Date Joined May 2010
Total Posts : 39
   Posted 6/18/2010 11:45 PM (GMT -6)   
Thanks jcat, I made an appointment with my local naturopath today after reading your comment, i had no idea they would be able to send blood tests to igenex! if I have any trouble with the clinic here I may have to visit the one in steveston. I started plaquinel and sulfasalazine today and told them i didnt want the methotrexate so we'll see how that goes i guess, i admit as much as i dont want to take these drugs, im looking forward to the relief if they work and in the meantime i can figure out whats really going on.

GWB
Veteran Member


Date Joined Jul 2005
Total Posts : 570
   Posted 6/19/2010 1:18 PM (GMT -6)   
PacificNW said...
Gary,

We have been reading this forum for a couple months and decided to join the other day.You have been an inspiration to our family. Your story is remarkable and thank you for sharing it with all.

We are looking forward to getting our 13yrs old son, off to the hansa center in a few weeks. We have been working very hard to financially be able to afford it. Such as fundraisers for our son and much more. We have spent so much money and have had no success. We bought a rife machine and of course, all the expenses of a llmd. We feel the hansa center is the right choice. We have read Dr. J's book and it makes so much sense. My son is so eager to go! I will keep you posted of his outcome!

Thank you again.



PacificNW,

I'm so excited that you'll be taking your son to the Hansa Center in a few weeks. That's awesome!

I'm glad my comments were an inspiration to you. Thanks to a member here, Deejavu, who told me about this protocol, I am doing much better today. I hadn't heard of this protocol until Denise told me about it. After doing some research on it, I admit I became both excite and skeptical. I had never heard of this type of testing and treatment before, so to do something that was so different than the "traditional method" of treating this disease was a bit scary to me. But when you're close to death, and antibiotics are no longer working for you, it makes you think of other alternatives that are out there and consider what your options are.

I won't repeat it all here as it's all be said on the thread I started here "Hansa Center Update" which you've obviously read already. I believe you will be very pleased with your decision to take your son to the HC. Last month a couple took their 14 year old son the the HC for the two week protocol and he's almost symptom free now. His mom said he's finally able to live like a normal teenager and play outside with his brothers and friends. He was so sick that he vomited daily and the doctors couldn't figure out what to do for him. After two weeks of treatment at the HC he's totally better now. Unbelievable!

I emailed the mom about you and told her to look at your posts on the forum. Maybe she will come on and you can ask her about her son's experience at the HC. He loved it there and is very happy he went. I pray your son have the same results that this young boy did who's almost the same age as your son. I think it's easier for kids to be treated and healed for a lot of reasons. But most of all, I believe in the power of prayer. My wife and I will be keeping your son (and your family in our prayers).

If you ever want to talk privately, we'll be glad to talk to you through my private email which you can access by clicking the email icon under my name. We'll be glad to talk to you by phone too if you wish. We can give that to you through our email correspondence.

By the way, my family lived in Seattle, WA for ten years several years ago. We loved living up in God's country! Sure do miss it!

Keep in touch and keep us posted about your son's treatment once he get's started.

God bless!

Gary
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