My Complicated Situation.

[PhoenixBurger]

Hello all -

This is going to require some "out of the box" thinking because its not something I think many people have encountered before. I'll try to keep this incredibly complex situation as simple as I can.

I and a few others I have corresponded with have experienced long term health problems after taking a course of very potent medications. I took mine in February and have not been well since. It was a solid 28 days of hell on my body, with inflammatory reactions, neuropathy, muscle pain, fatigue, flu symptoms, and everything in the book. But they were necessary to take.

Ever since then I have been struggling with health problems that seem to have no explanation. Debilitating bouts of fatigue that last a week, then disappear as soon as they arrived. Swelling and aching in my armpits, crawling weakness sensations all over my body. Most recently swollen glands and muscle twitching began. Neuropathy, temperature sensitivity, and more intense fatigue than I've ever had to date.

This waxing and waning has continued for 9 months with the majority of that time feeling "okay", with bouts of "terrible". The bodywide muscle twitching and spasms is what finally sent me to a Neurologist. I was having cognition problems, and numerous other issues. Within 8 weeks I developed severe burning and aching in my muscles everywhere, and things started going down hill from there. All blood work, EMG, MRI, etc were completely normal. I lost at least 20lbs in the last two months. I have gone from being able to work out with *heavy* weight to being fatigued lifting 20lb dumbbells. Forget a solid workout, I am laid out with weakness for 3 days straight and muscle spasms all over the place.

My neurologist diagnosed me with beginning stage CFS or Fibromyalgia, as a result of toxicity from the medications. I requested a test for CMV and EBV and the Cytomegalovirus came back positive, current, active infection. High on both IGM and IGG. While I felt I finally had my answer, that doctor and every single other one looked at me like I was an idiot.

This is where my frustration with doctors came to a head. In the last 9 months I have been told I am imagining my symptoms, because doctors can't fathom a syndrome could exist with normal test results. None of them acknowledge any ties between CMV / EBV and coinfections with Chronic Fatigue Syndrome or Fibro. None of them will even run a PCR test to see my CMV numbers. None will run a HHV-6 test. None will agree to run a Parpovirus test. They wont do anything. All they do is refer me to someone else, I wait a month, have the same 15 minute conversation, and then get told there's no solution. One thing I am done putting up with however, is being told that Im "creating" my symptoms by "researching on the internet". To me that is the ultimate insult to a guy like myself who creates health web sites for a living, and has over 14 years experience researching health conditions. I'm no fool.

At this point I have decided to try and get in with Dr. Klimas. I fortunately live here in Miami FL. I am waiting on a call back from them. I managed to get a referral from my Neurologist so that is set.

I don't expect all of you to have the answers, but I am convinced the medications reactivated CMV (or I simply acquired it around the same time) and it has been coming and going ever since. Symptoms always worsen in relation to my level of fatigue or stress. They can completely disappear or come back. Usually it was on a monthly cycle, ironically.

I managed to get a prescription for Valtrex (even though I know its only minimally effective for CMV), and I have begun several immune boosting supplements like ProBoost, ProPax with NT Factor, and the whole list of immune supporting herbal things - cats claw, ecinacea, garlic, mushroom, etc.

How did all of you get your doctors to run all these tests? I simply don't understand! You all talk about how your doctor did this, this, and this for you. All my doctors say No, No, and No to me. I've seen 5 doctors now. Two primary care, Two neurologists, 1 infectious disease. None had a single thing to contribute to the situation. Aside from telling me that my theories on viral infections causing CFS symtpoms is utter nonsense.

 

[Seven7]

Dr Klimas group did it for me. I see Dr Rey, I think they know what to test for and based in your symptoms they run some extras. You will be very happy if you get in. Just keep calling, don't just sit and wait to get in.

 

[Valentijn]

I found a licensed Naturopathic Doctor who is willing to run tests, and try some treatments after we discuss things and look at the results that I already have.

With ME/CFS, the most defining symptom is Post-Exertional Malaise. This entails getting very sick (flu-like without the fever) a day or so after too much exertion. "Too much" can vary immensely from one ME patient to the next. If you aren't sure if that is happening, try to watch for the pattern - if it is happening, simply avoiding triggering these "crashes" can be very helpful to avoid things getting worse, and possibly allow your body a shot at recovery.

What drug did you take that you and the others think triggered this?

 

[PhoenixBurger]

Thanks Inester - thats good to know. I am staying on top of them about the appointment. Im afraid the wait will be long though. I guess im super lucky that i live in Miami.

Valentijn ..... thank you. I've avoided ND's thus far but have seriously been considering a D.O. ... which combine the best of both worlds, including ND knowledge and medical too.

The medications were for HIV Post Exposure Prophylaxis. It was a toxic four drug regimen of AZT, Lamuvidine, Ritonivir, and Lopinavir. 28 days, 10 pills. I work in health and was exposed to an HIV+ individual and was put on the potent toxic meds to prevent infection. They worked, but I have been sick ever since. There is documented xamples of HIV ARV meds causing resurgence of CMV, EBV, as well as Sarcoidosis and numerous other conditions. I don't know if its because it kills your immune system or if its because of Mitochondrial Toxicity or some combination of the two. But one thing I can tell you - this feels exactly like when I had Mono ten years ago. Exactly. The feeling is so unique. That weakness. That tingling crawling weakness. Saturating my muscles.

Exercise intolerance is my biggest problem. I used to work out full body with 75lb dumbbells 4 times a week, plus cardio. Now I can only lift 20lb dumbbells and walk 5 minutes on the treadmill. This results in not one ... but four days of exhaustion, increased muscle spasms all over my body, and major sleep problems / weakness / shaking. If I dont work out at all however, the muscle pain starts to increase and burning saturates my muscles. It gets worse and worse until I excercise. I feel like a 90 year old man. Yet I am a slim, fit, fairly muscular 38 year old guy.

My EBV is currently inactive, but when i saw the CMV come positive, it seemed like I finally had my explanation. I've been unable to get any doctor to do further testing for HHV6 or others. They think im stupid already for implying that CMV can cause a mononucleosis syndrome. They think this can only happen in immunocompromised individuals. When I try to tell them this is not true, they don't want to hear it. I always feel completely speechless talking to doctors lately. Their skepticism, unwillingness to listen, and utter refusal to think "outside the box" just takes the wind from my sails. It deflates me. I hate feeling like a fool when I am speaking. I can see it on their face, even though I have volumes of evidence backing my theories.

HIV tests have been negative from start to finish so that's not on the table. As mentioned, there are a bunch of people in the health care industry who are put on these Prophylaxis meds and have months/years of Fibro/CFS/Myopathy problems. I know one guy who developed sarcoidosis.

The problem? HIV negative healthy people never take these drugs! So there is no data on this. People with HIV get sick - you better believe it - but they always blame the HIV. There are a lot of people out there who know the sickness is medication-induced. Doctors are so incapable of entertaining any creative thoughts that we are all told we're imagining things. If it doesnt exist in their little book, it doesn't exist. Im tired of it.

 

[Sea]

Hi PhoenixBurger, welcome to the forum. Unfortunately your situation is not as rare as we would hope. I agree that getting to see Dr Klimas is a good idea. I hope you can get in soon and that she has some useful answers for you.

 

[PhoenixBurger]

I guess when I said rare, I meant the HIV medications triggering everything. Not many people have that experience. Are a lot of folks here dealing with this type of thing after toxic meds they took?

 

[SOC]

FWIW, Dr Klimas spent many years treating HIV patients, so her clinic sounds like a good place for you since they have knowledge of both HIV meds and ME/CFS. Good luck.

 

[PhoenixBurger]

Unfortunately it is the HIV doctors who are *least* willing to entertain the possibility that HIV medications could be the cause of chronic or long term health problems. Most of the people I have spoken to have met the most resistance from these individuals because there is so much heavy politics in the business of HIV medications.

 

[Sushi]

I guess when I said rare, I meant the HIV medications triggering everything. Not many people have that experience. Are a lot of folks here dealing with this type of thing after toxic meds they took?

Some are.

Sushi

 

[Esther12]

Is it possible that you're suffering from some sort of 'burnout', if you were doing intensive weight training, and then your body was put under additional strain because of the medications you were on?

I don't know much about this, but apparently people involved in those sorts of fitness programmes are aware of something they call burnout, and it could be worth considering that (you may have already). Sorry not to be of more use. CFS should be a bit of a diagnosis of last resort, so it's probably worth looking elsewhere first, in the hope of finding an alternative diagnosis. Good luck.

 

[taniaaust1]

It does sound like ME symptoms.. ME/CFS can have so many different "triggers" for whatever this illness is and I dont think you will be alone here in having medication triggered ME/CFS thou I myself havent heard of the AIDS drugs doing that to people before (ME triggered by medical, we usually hear of vaccine triggered ME), so Ive found your post interesting.

Its good that you are going to go to Dr Klimas as she I think will be the right one for you to be seeing.

Exercise intolerance is my biggest problem. I used to work out full body with 75lb dumbbells 4 times a week, plus cardio. Now I can only lift 20lb dumbbells and walk 5 minutes on the treadmill. This results in not one ... but four days of exhaustion, increased muscle spasms all over my body, and major sleep problems / weakness / shaking. If I dont work out at all however, the muscle pain starts to increase and burning saturates my muscles. It gets worse and worse until I excercise.

If you have both ME and FM which it sounds like you may have also some FM going on too.. exercise can be helpful to FM (FM may be why you may be getting muscle pain increase due to no exercise) .. but of cause triggers ME ... so you will need to find the right balance for yourself...but take care that you dont over do it and worsen your whole ME. You need to find a level which you can do on a fairly even basis rather then doing more one day and then be exhausted for 4 days, which is a big up and down cycle which isnt good to be getting into. You need to find the activity line where you are more stable.

None of them will even run a PCR test to see my CMV numbers. None will run a HHV-6 test. None will agree to run a Parpovirus test. They wont do anything

Ive had this llness for 15 years and havent had those tests (I thou have had CMV exposure and showed that but the test said it didnt rule out active infection at all). Like you.. I had mono before and my early ME years did feel much like the severe mono I'd had. Ive seen an incredible amount of drs and specialists (probably number in the 40s now), trying to get tests or treatments. In the past few years thou some issues have been found due to doctors doing some tests which werent done before so now I have some things being treated for.

They wont do anything. All they do is refer me to someone else, I wait a month, have the same 15 minute conversation, and then get told there's no solution.

This is why its very important to go to a ME/CFS specialist. This illness is way too complex for any ordinary doctor to handle and be up with the info. Those you hear getting tests done here.. tend to usually be going and seeing ME/CFS specialists who have more of a clue what tests we need done.

best luck.. you are lucky you have a good ME specialist not far away. (there is no ME specialist in my whole state.. the lack of specialists around is a huge issue).

 

[GracieJ]

Complicated is the word for sure! Welcome to the forums. I hope you find some good answers.

What you are experiencing is the same story told here over and over again... you are in good company. There is a wide variance in symptoms onset, severity, and actual symptoms, but the onset nightmare is almost always the same, coming first from an active life to not-so-active.

I am happy for you that you are close to Dr. Klimas. I think there are good answers ahead for you in a relatively short length of time. Some of us have gone years without a good dx -- I went 14 before CFS and FMS were confirmed.

Some alternative medicine clinics and doctors are actually very, very good at pinning down the symptoms with these bizarre conditions. That is where all my breakthroughs came, and I am very grateful for doctors who think outside the box. I'm not sure I would start with an ME/CFS specialist if it were new to me now, as it is natural medicine and mega nutrients that have brought me back to 75% function, and most specialists use prescription medications, something I no longer will go along with because of liver health. Now if they agree with a patient using natural things, that would be awesome! Just saying... my own opinion. Good luck!

 

[justy]

Hi, sorry - to hear of the situation you are in. Here in the UK we have a similar ptoblem with not being able to get testing that we need, and hearing others on the board talk about the testing they have had can be frustrating.

Your posts are very precise and eloquent - it must be frustrating to be looked at like that by doctors when you clearly are able to discuss your health situation rationally.

You say that someone you know developed Sarcoidosis from this drug. And i did wonder if you had been properly tested for autoimmune diseases - specifically Lupus (can be drug induced, but cant find much on the net from just a quick search) and as you know of one other person with it, Saroidosis. Both can have symptoms very similar to M.E and i am still trying to convince my GP to rule these out for me - after 17 years of illness off and on.

Of course the other issue is that current research does seem to point to a possible as yet unexpalined autoimmune basis for M.E - and we just don't know enough about this all yet to say. In the research i have done over the past 4 years i am very struck by how similar M.E is to other autoimmune diseases such as M.S, Lupus etc.

I hope you get in to see Dr Klimas soon and get some answers from her. I don't know what her clinic is like, but it is highly thought of by patients.
One thing i would say about seeing an M.E specialist is that although they do do specialist testing, i dont think they are that hot on excluding other conditions first. They have their set of theories and fit you into it. I have had a set of tests done with a private M.E doctor in the UK and whilst i appreciate the information from them, i also know they they may not specifically show i have M.E. What they do show is that i am very ill with something. I have high cell free DNA, mito damage, stomach rptoblems - but we know these issues are also common in many other diseases. I alo suspect that viruses may reactivate in other autoimmune disorders and not get cleared. A large number of Lupus patients also have Fibro (approx 30% off the top of my head) so there is considerable overlap in these diorders.

The reason i press this point home is because, if i could avoid a diagnosis of CFS/ME i certainly would. If you get misdiagnosed because of inadequate testing it could be years, if ever before you get any real answers. The only doctor i know off who tests for other diseases extensively and finds the majority of M.ECFS patients have been misdiagnosed is Dr Byron Hyde in Canada. Otherwise a good naturopathic doctor could be the way forward. They seem less interested in the diagnosis and more interested in turning you health around. Many people on here, including myself have had good results with improvements from a more natural approach of balancing hormones, modulating immune etc.

Good luck, Justy

 

[Sparrow]

I wasn't able to read the responses of others, but wanted to respond as I was able anyway...

Medications did not start my ME, but they were involved in making it worse, for sure. I definitely think that's possible.

I have learned not to bother at all with "mainstream" doctors when it comes to ME/CFS. Even the well-intentioned ones just don't know enough to be helpful, and they just aren't trained to try things that haven't already been well-established. And nothing about curing ME/CFS is well-established at this point. At best, they are helpless, and at worse, they make assumptions like you've encountered about bringing this on yourself. I spent a lot of time and energy early after my diagnosis going from doctor to doctor and specialist to specialist trying to find someone who could/would help me, each time thinking that surely if I just bring/say/explain x y or z that they would help me this time. I would advise you not to do the same. I hate how bitter this makes me sound, but it's the truth.

"Ingegrative" doctors can be of some help, and are more willing to try out-of-the-box things. Otherwise, I would look only for people who are specialists specifically in ME/CFS and have built their career around it. Those people may be able to help. Honestly, there really isn't much they can do either in the end, but there are a few things they can try that might help some or that do great things for some people. You will also need to be aware that each specialist in ME/CFS tends to have a group of treatments that they use and some that they don't, so if their methods don't work for you, you may have to continue on and see a different specialist for more treatment options. Good luck with the journey.

 

[GracieJ]

I really agree with the idea voiced here many times that it is not so much the diagnostic label that one gets, it is whether or not the symptoms are addressed. Sometimes it is the individual doctor and their attitude that will make or break the situation, regardless of the type of doctor.

Must say, though, there were two wonderfully pivotal moments in my journey: Finally hearing a doctor say "CFS" after 14 years (anticlimactic as it was!) and finding the Fukuda criteria years and years after the fact, outdated as they already were. So validating, do an arm pump or two shouting, Yes, Yes!!

Exclusion of other conditions is priceless information.