I’m at the end of my rope

[matv]

Hi, my name is Mathew. I’m 31. I’m new here, but I have seen a lot of the testimonials, and it’s keeping me hopeful.

sort of.

I feel somewhat hopeless. I have somewhat of a long story, I could create my own topic in the personals section but I haven’t even been officially diagnosed. Well, I have, but I’m 100% sure it’s the wrong one.

Regardless, here is a summary:

Back in 2004, I started developing aches and pains. Some close people to the family passed away and I guess I was deep breathing more. I started feeling aches and pains in my muscles and such, I didn’t think much of it. Then my rib cage started hurting for no reason. I started doing things like looking things up, which was bad. I went to the doctor, he said I was depressed, and I probably slept on my side too hard.

Anyways, long story short, I developed a major anxiety problem in the coming months. I was riding on my bike, breathing heavily and this thing flew into my mouth, ..it could have been a bug. I don’t know. This was in an Ontario city. Ticks aren’t known here. I pulled it out and tossed it away .. but I got worried. Aches and pains everywhere, joint aches, I got very worried and went to the doctors again. He gave me an anti-depressant that when I took it, caused major (major) anxiety. To the point of calling an ambulance and my saliva actually turned into a hard foam like substance. Things calmed down a month or so later.

Anyways, skipping ahead, I’ve gone back various times for other little pain complaints like the ones mentioned, persistent sore throats, chest aches, etc. I always got antidepressants and calmed down and things always got better.

2010 comes, I’m living on the other side of the country now (British Columbia) and I temporarily went deaf in one ear. It lessened and fixed itself, I attributed it to the different pressure because of mountains, etc

July 2011 comes and this is where it all gets really bad.
The temporary deafness thing happens again and then tinnitus. I noticed pain in the right side of my throat growing, etc. I figured it was because of my tonsiliths (they were starting to get bad) ..

Then, my achillies tendons in both feet started to hurt. I was confused, but attributed it to bad shoes. Then my right foot started to hurt. My left knee swelled. Then my left foot and then right knee. I also developed a sore throat upon swallowing…

A chronic cough that started at the end of august, continued until January.

At this point I was very scared, not to mention there’s been a lot of skipped heart beats I’d been feeling. My pulse was a constant 90 to 110 even at rest. I knew something was wrong. My chronic hyperventilation (deep breath sighing) started to get worse as I got way more anxious. I went to a new GP, who looked at my symptoms and said “In all my 30 years of practice, I’ve never seen this”.. then said “It’s got to be arthritis”. He prescribed me the dmard sulfasalazine, which I did not take because there was no lab proof except to say that I was inflamed.

I saw my podiatrist who looked at my feet and I bought orthotics, which helped me walk better.. but nothing was fixed after that. I went to my family doctor in Ontario when I was visiting my family, and he said “stress fracture”. He was shocked that I was given a DMARD. My podiatrist ordered a bone scan, which showed darkness in both knees, both feet, and a few other spots in my body which I didn’t think had any inflammation.

I got back to BC, and got referred to a Rheumatologist. I couldn’t see him for a month and a half (January 3, 2012). By this time I was working 40 hours a week during holiday hours at a busy electronics store. I was in so much pain, I could only function if I used NSAID drugs like diclofenac.

When I got to see the rheumy, he said “Reactive arthritis” (which is what my friend in the states thought it was). They came to this conclusion because of the achillies involvement. I had also mentioned I had contact with a good friend which I did not use protection for, so he was thinking chlamydia. He gave me a 3 month supply of Doxycycline.

Anyways, specific tests were run. I don’t know exact values, because over here they guard their records and get annoyed when I ask for copies.

I moved back to Ontario for a few months two days after seeing the rheumy January 5 2012. (where I currently am).. Went for some acupuncture for the legs.. My feet swelled up like balloons. Kept going back, they kept swelling, but eventually got better. I asked my family doctor to do some tests, and now he was convinced I was auto-immune because:

Positive ANA. CRP had activity. I don’t know the values again because they didn’t tell me.. I got referred to a rheumy in Toronto who saw me and concurred that it was “reactive arthritis” and he also told me that he thinks I may have reynauds syndrome (my fingers are cold, and when I sit on them, my knuckles turn red)

So, scared, I looked things up. I still don’t have an official diagnosis other than reactive arthritis. I have symptoms that Lupus could explain, I have some tightness that scleroderma could explain, and I have weakness in my legs that dermatomyositis could explain. I started getting upset and even started saying some goodbyes to people (I don’t know if I’m going back to British Columbia)

I found the Road Back foundation after searching for “alternative therapies” (because steroids and chemo drugs didn’t appeal to me…I was thinking in the long term here)

I started the doxycycline 100mg 1 morning 1 night 7 days a week order that my BC rheumy prescribed. I noticed improvement in my throat as my cough went away after a few weeks. My knees have minimal swelling and my ankles no longer blow up like balloons.. But I’m nearly done my second month’s supply, so I changed my dosage to 100mg morning and night M W F…according to a rheumatoid arthritis regimen. However, how do I know that’s right? I don’t.

I’m scared, I feel like I’ve been handed a death sentence. I’m only 31.

What really scares me is, I don’t know if I could keep up with the dietary requirements of AP. I also don’t know if I could even AFFORD the drugs, as yes Canadian health care is “free” (in BC if you make enough money, you pay) .. but the drugs are still expensive, and I’m not working right now.. That and I have a huge credit card and student loan to pay off. Should I just declare bankruptcy?

I haven’t slept well in 2 months due to all this worry. It’s accelerating my deterioration. 🙁 People keep telling me to stay positive but I just don’t know how…

I thank each and every one of you for any advice you can give me, I also appreciate websites like this that exist to give people hope when conventional medicine tells you you’re a hypochondriac.

-Mathew

[marg]

Mathew, I can tell you , you have not been “handed a death sentence”. You have come to a site where people will help you try to understand what’s happening. The fact that doxy had positive effects is really encouraging. To me that sounds like AP may well be what will work for you.

I know people with more expertise and experience than I have will weigh in on this. In the meantime try to stop scaring yourself – I know it’s hard- but try to move your focus to other things that interest you . I just know this site will be a source of help.

Hang on . You came to the right place!!

[PhilC]

Hi Mathew,

I have good news: You have found a new rope, and it’s a very long one. 🙂

I agree that your present diagnosis of reactive arthritis is most likely incorrect. Of course, I am not a doctor, but it seems that there is more going on than can be explained by that diagnosis. However, in one sense it is very likely correct– that your illness is due to an infection.

Based on your symptoms, I think it is highly likely that you have Lyme Disease. You said that there aren’t any ticks in that Ontario city (Toronto?) you were living in. I wouldn’t be too sure of that. And being 31 years old, I think it is not likely that you have never gone camping, hiking, walked through a field or tall grass, rolled around in the grass as a kid, etc. Also, some scientists believe that Lyme Disease can be spread by other blood-sucking arthropods, and not just ticks.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[Parisa]

Mathew,

My gut feeling is that you have a combination of Lyme disease and Babesia and possibly other co-infections. The anxiety, muscle weakness, chest pain, trying to catch a breath are Babesia symptoms. Do what you have to do get better even if it means declaring bankruptcy, asking parents for help, etc. You are young and have a whole life in front of you. This can be overcome and you will enjoy life again.

[Michele]

Matthew

This forum saved my life. I came to it with very similar symptoms as yours when I found this forum about 4 1/2 years ago. I recognize your foot pain, rib cage pain, muscle pain, joint pain, sore throat, swollen tonsils, brain fog, air hunger, skin rashes, unstable balance, exhaustion, oppressive fatigue, sleep deprivation, heart palpitations. I had all of those symptoms upon arriving here. My (mis)-diagnosis then was rheumatoid arthritis. With the very caring guidance and wisdom from people on this board, I was certain my illness was triggered by multiple sources so I kept researching as to these causes. Heavy metal poisoning is also part of my “pea soup” of issues from some amalgam fillings. (all removed now…starting chelation this next week!) I started on AP, moved to MP (Marshall Protocol) and now for over 2 years have been with a lyme literate rheumatologist. That’s actually a very rare combo in a doctor; but this doc also has lyme. Doc’s with lyme have a very personal interest in the disease. Finding a doc is half the battle! This lyme literate doctor dramatically changed my life for the better health-wise. Now I have occasional rib pain, air hunger, and a little occasional joint pain. I’m still in treatment and have a long ways to go yet, but let me tell you, you CAN get better. Now I forget that I’m sick sometimes. I never thought that possible 4 years ago!

You are right to keep researching and finding a way to recovery. It will take a lot of life-changing decisions. (i.e. diet and medical expenses) Find out all you can about Lyme and it’s co-infections. You describe symptoms of classic lyme (borellia burgdorferi) and co-infections like Bartonella, and Babesia. Feeling improvement on Doxycycline is also telling. Lyme disease is not an easy recovery journey, but it’s far better to be on a journey of recovery than immune suppressants! Grab this RBF rope and network to find yourself a doctor in which other lyme patients are having success. This is doable!!!

When I first came here I wondered why many people who recovered and now healthy didn’t show up on the board much…the answer is they are back to living busy lives. I am thrilled to be back among the people busy living life! There are also some long-standing angelic volunteers who are dedicated to donating their time for the cause of the RBF. (You folks know who you are!) I just happened to stop by here tonight and saw your post. Rib cage pain always grabs me into a discussion here because it is so unusual. For me, that symptom is from Babesia WA1 or the Duncani (rarer) version. Babesia Microti is more common.

You sound like you have already started sorting things out. Grab the RBF rope and climb back into life!

Michele

[lynnie_sydney]

Mathhew
Just want to join with the others and welcome you. I agree that it is very likely that you have Lyme Disease and some co-infections. If I were you, I’d ask for a list of LLMD’s closest to you and also the list of the most experienced – one of the U.S. Volunteers can forward those to you. It sounds like doxy is working for you and you will probably needs additional meds to treat multiple pathogens. But, first things first. Hang around the Forum and ask some questions. Use the search box at the top of General Discussion page and type in some key words – a grat deal of past discussion will come up that you can look through for answers. You might want to also check out CanLyme site. And read through the 2008 Burrascano Guidelines on treatment (regarded as the Gold Standard) for Lyme and the various coinfections – which also gives a list of symptoms for each that you will probably relate to. Link to a pdf of that doc is below.
And try not to stress. Diet and other things can be addressed over time. Education is a key factor and that too will be accumulated over time. You CAN get well and it’s not a quick fix, so patience is the key.

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[matv]

Thanks to everyone who responded.

Lyme disease. And just like that, I’m thrust into one of the most controversial topics in medicine. It’s annoying. I can’t talk to my family doctor, he will surely laugh at me.

I’m displaying signs of sjogren’s ..slowed tear production. It’s making me anxious… I’lldrink more water

I can’t afford all these doctors and medication.. I almost feel like breaking down and giving up 🙁

[matv]

Well, I just did some research. Apparently the only LLMDs around my area, or Hell.. Canada, are no longer taking Lyme patients as they’re all under review.

I honestly don’t get it. These people are here to help us and the government is stopping them. I just don’t get it.

[Eileen]

Mathew,

You are definitely in the right place with the rest of us here on the RB. You will find a wealth of information and loving support. We’ll be here for you every step of the way.

I second Parisa’s post.

Eileen

[marg]

Mathew, you sound overwhelmed, which I can certainly understand. I think you’re going to make a plan, though and I think you’re going to help yourself get better – not fast, but still… I think this because even with the multitude of symptoms and worries that you have, you keep researching and trying to figure things out. And some stuff makes you mad and that’s OK. Shows you’re in there fighting!!

Is there someone, family or a friend, who would help you decide on a plan of action and be a person to talk to on a regular basis? I think Parisa had good advice – declare bankruptcy if need be, not the end of the world. Find a doctor. The Toronto doc who does a lot of procedures not covered by OHIP is likely not a good choice for you. Prescriptions in Ontario are pretty well covered with minimal payments by the patient. My daughter’s Minocin is covered even though it’s not the “mainstream” scrip for RA – but it is an anti-inflammatory, so it qualified. A savvy doc knows how to order scrips that will be covered.

A test for Lyme from the Igenex lab (American) would cost – and be worth it- because it would be accurate and give you a starting point for working with a doc. If you can’t get an LLMD, do the best you can. Folks here will help, they really will.

One more point tonight that I’ll offer. You say you don’t know how to be positive and from info already given to you here, it sounds like this is a symptom of the infection. Now this may sound simplistic – BUT- if you will try every day to get out and walk – for even 1/2 hour ( so long as your ankles aren’t bad)- you will find that lifts your mood at least for awhile. I do know that when you’re in this kind of state, even summoning the energy to put your coat on and get going is hard – but do it.

So glad you found this site. Clearly you want to help youself and I know you’re going to do it!!
marg

[PhilC]

Hi Mat,
@matv wrote:

I can’t afford all these doctors and medication.. I almost feel like breaking down and giving up 🙁

Doxycycline is not very expensive. If all you can do is stay on doxycycline, that alone will be a big help. It may not “cure” you, but it will help stabilize your condition, and you will probably see improvements while you are on it.

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[matv]

Thank you for the support everyone, I take it to heart. If i feel myself upon collapse again, I’ll reread your comments for strength. 🙂

I do have a lot on my mind. It’ll be hard.

[DragonSlayer]

Hi, Mathew:

You have described a potential for several different reactive arthritides, but especially AS, with the distribution of symptoms over time. Especially true if You are cyclic or “flare” and then go into even brief periods of remission. I might consider giardiasis, if getting water that was ‘suspect’ especially while traveling about.

Also, important to have the HLA B27 test as a positive result would be near-absolute while negative still inconclusive. But You are in the age range for AS and not RA and the onset sounds like an ReA that turns into AS in susceptible individuals.

Regret You cannot stick to a diet; I recommend one that is very strict but only for 11 day periods, but then after only somewhat strict. But I also highly recommend a total take-down of the intestinal flora followed with some benign implantation and gut-healing foods (google LGS–leaky gut syndrome).

HEALTH,
John

[matv]

My doctor looked at me like i was a paranoid schitzo when i told him I was trying to go gluten free, then proceeded to tell me I wasn’t celiac because of a certain condition I don’t meet.

I trust my doctor, had him for 30 years, he delivered me. But i think you’re right about the diet.

As for hla-b27, a test I had in Jan and again in Feb (my doc reordered the test my rheumy did for some reason) proved to be negative. Reactive arthritis tends to be positive 75% of the time. Just like ANA usually isn’t positive in ReA (mine is positive although I wasn’t told what number or pattern) ..also symptoms tend to be asymmetric, whereas mine were symmetric.

Seeing as though I had 3 of the unlikely criteria for ReA, I have concluded that my chances of it being ReA are probably lower than me having lupus, and that’s a 10% chance. Another article suggest HIV tests be done. The chances of me having HIV or HepC are lower than the chances of me walking out in the street and getting hit by a plane. (sexual contact is nil, and i don’t do drugs, nor have had relatives HIV positive, or even had a blood transfusion in my life). My rheumy ordered the tests regardless, negative for HIV and hep a, b, c.

I also read somewhere that having polyarthritis (4 or more joints) that lasted longer than half a year was perfect reason to test for other conditions like SLE, PsA, RA, SD, etc.

..I really should stay off the internet. Heh. It’s funny, when something happens to me, I need to become an expert. I should become a rheumatologist!

My rhrumy because of the ReA diag gave me doxycycline for 3 months. After realizing ReA was unlikely, I altered my dosage to a M W F regimen, for preventative maintenance until the real problem rears its head and i can see my rheumy again. As I’m pretty sure my family doc doesn’t subscribe to tetracycline as an autoimmune treatment, no matter how much convincing (though there’s no doubt doxy has helped me immensely)

I do need to start pro biotics though. Just the pro biotic options here are expensive. I am going to look into bulk purchases.

EDIT: fixed some cell phone auto-correct typos

[marypart]

Mat,

Call all your local LLMD’s and beg them to at least see you and order an Igenex Western Blot for Lyme as well as tests for co-infections. I also recommend that you read up on Lyme.

lymedisease.org

lymenet.org

I agree with the other posters that you likely have Lyme and Babesia. At any rate, you need a doctor who will search for the infectious trigger for you arthritis.

My son was very much like you… he was 19 when it hit. His rheumatologist is an LLMD and she has treated him with antibiotics, anti-parasitics and antiviral orals. (At the beginning he did 4 months of IV antibiotics.) He is much much better– down to problems in one ankle and some costochondritis near the collarbone. It had been in both shoulders, both hips, both sides of the sternum, both elbows, both ankles, both knees.

I also think you should do everything you can to heal your gut. Autoimmune disease starts in the gut… that’s becoming even the mainstream medical viewpoint.

If you want to really heal your gut… do a Paleo Diet. Google it. It’s not that hard once you make up your mind.

Good luck.
Mary

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