21,105 members16,730 posts

Rheumy says no lupus

Well, I went back to rheumy, and apparently my bloodwork shows no lupus, no hashimotos. I said, but what about my symptoms, not feeling well, this and that. He kept saying, oh come on, you are not sick. This is a 70 yr old rheumy that I believe is a little off. He said nothing about the knots on my toes and fingers and even when I told him an X-ray 10 yrs ago done by a chiropractor found evidence of arthritis in my spine. He dismissed all of this. I have pain in the middle of my back all the time. Even when I asked him what is the explanation for my scarred kidneys, migraines, joint pain in my hips...etc...oh! I forgot to ask him about my dizziness. He just dismissed everything. Till he finally said, you are just having all these feelings because you take care of things at home, active and not sleeping well. Would you like a prescript for a sleeping pill. Then, and only then, did I realize that this man is a just a drug pusher. OR, the digestive enzymes and natto k enzymes for sticky blood are working so well, I am cured! I took a copy of the bloodwork and compared it with my bloodwork from a year ago. A lot of the numbers are different. But some of them, I noticed, because they are in the range that some doctor considers to be the range of normal, are either on the low end or high end of the spectrum and could lead to sle or vitamin b12 deficiency, or iron deficiency. Very interesting. So, here I am, or maybe, I should be going off the site. I will be watching still because I don't believe nothing is going on. Good luck everyone.

19 Replies

Well that is both encouraging and discouraging news, isn't it? Receiving a positive result but still not feeling yourself - now what, did he recommend or point you in any other direction, besides taking a sleeping pill? The thought of starting all over again with another Rheumi is rather daunting, age does give him a lot of experience but perhaps someone with a fresher outlook on these things would be better. They can be Rheumi's but, if they only work with arthritis they might not see the lupus clues, I had one of those. You have been managing quite well with your own plan, so maybe continue until something more obvious shows up, it will or it won't. You don't have to leave us though, you still have a lot of good insight to share.

1 like

Thanks thought was that getting a good night sleep 3 weeks in a row (his recommendation) would cure me of my pains sort of reminded me of the medieval times. ha! I would love to believe that a good nights rest would cure me. I can hardly get out of bed every morning. I still believe he is wrong, but may just go back every so often to check blood work to see if my numbers changed. I will continue with my own health plan, diet, nutrition and enzyme supplements. I won't stop taking those because I will go back to poorer health I believe. I really believe it's stress, our poor environment and lack of enzyme production with age. Plus factor in genetics, and these are things doctors don't believe in or know about. In fact, the last thing the rheumy said was, "we don't know everything" that was a pretty honest statement. He does want to see me again in 3 months.


I guess there may be something that you are doing without regular medical intervention that is mostly keeping your symptoms at an 'acceptable' level. Well from the professions interpretation anyway. If this is true maybe you deserve to earn the same sums, or maybe the testing is based largely on bumpkum. Either way its a pretty poor show to be feeling so under par and a qualified professional can offer no assistance.

After reading about certain areas that 'run from cures', apparently, I have started to wonder if many of us are actually just participants in ongoing drug trials anyway.

No cure for this, no cure for that. But here is a drug you can take longterm that might alleviate symptoms and it will keep the big pharma drug pushers in business.

How did you get on with the juicing?

There are many on various forums that have been failed by doctors who doctor by blood result rather than by listening to patients. So I wouldnt be put off if all of your other symptoms seem to hold true.


Overnighthearingloss....well, I just don't know anymore. Right now I am so broke I can't buy anymore digestive enzymes, credit cards maxed out, bank card was compromised this weekend....will see how I get on without the enzymes this week. I am already up because I am wide awake and cannot sleep...I was very depressed all weekend which I am reading is hypothryoid related (again, my numbers are ok but my sister has it ) ....I am tired of doctors. In fact, while I was in the waiting room, one of those drug pushing pharmaceutical companies was in the office wanting to see the doctor. He also asked me about any indigestion (ignoring all of my other symptoms) as if he wanted to prescribe me Prilosec. I have been doing the juicing, and it seemed to make me feel a lot better. Takes vigilance to keep up with on a daily basis. Sometimes, I get too tired and distracted. Right now I am running out of veggies and fruits to do this week. I need to get back to, because it believe it does help. I wasn't as shaky. I am taking magnesium right now at night for foot and calf cramping. Seem to be getting that every night, and I drink a lot of water. Thanks for asking...hope you are well...


You may have already come across it but the Gerson therapy methods for beating cancer are steeped in the idea of juicing.

I believe that juicing vegetables is supposed to provide greater benefits than just juicing fruits

In today's world much of the food we eat even in a 'well balanced diet' may be lacking in adequate nutritional content. Akin to eating cardboard. It might fill but lacks the parts to provide energy. That is what I am beginning to believe is behind our obesity explosion. The body should have shutoff systems to tell us when we have all our necessary nutrients. But if our bodies are craving nutrients we still get the urge to take more onboard.

Over time our bodies react to these deficiencies and cause diaease. Modern medicine that reliies on a pill to remove the effects of symptoms does nothing to help with chronic conditions.

In some cases of thyroid issues there may be an iodine deficiency. Try using watercress in your diet. Its high in iodine. See if there are any improvements.

Re the juicing. Sometimes if the body is having a clean out you can get some nasty effects whilst this is occurring. Things like aches and headaches.

I know that I generally feel better when I have had periods where i have eaten a greater proportion of fresh unprocessed (in any way) food. I also found that a few days away from dairy products relying on calcium from other source my shoe size decreased. Yep really. Is dairy a cause of inflammation? ?? I get cravings for dairy though so just replacing where I can now.

Would you mind pming me info on the supplements you take, simply so that nobody can accuse anyone of pushing a particular product. But I would like to see if it tallies with anything I am reading.

Natural yogurt also contains beneficial probiotic type substances. That coupled with a reduced sugar intake may assist with gut re balancing.

If you are in an area of the US where they fluoridate the water, that could be adding to your issues. Fluoride ingestion seems to interfere with thyroid function


Overnighthearingloss ...thanks for the info on juicing. Yes, I try to juice vegetables with fruit. Or just vegetables, as too much sugar from fruit will probably give me a yeast infection. I have had watercress in one of my drinks. I will try to incorporate more. I have been using iodized sea salt as much as I can....and yes, there is fluoride in our water (my sister, a pediatrician, says it's important) . Ridiculous. I didn't ask for it. I also drink bottled water , and brush my teeth with bottled water. I can't always cook with it, as it is getting costly. I will send you a message about enzymes. I still choose to keep dairy out of my diet. Especially after the lecture from this enzyme co that said we stop producing lactose at the age of 2. This is the enzyme that breaks down dairy. So interesting. Opened my eyes up. I wish the medical industry could get on this understanding. Could cure a lot of diseases. I was an anthropology major in college, and learned cavemen lived only to their 40s. I started getting problems in my mid 40s. Ha! We have a longway to go in the medical field.


Re bottled water. Check what you are drinking. Some come with added fluoride

I wish I was kidding.

You know you could almost overlay the areas where lupus is rife with the areas where fluoride is added to the water supply

Many countries who decide to add it in the past have now reversed that decision


From what I understood with lupus you can go into what's classed as remission it doesn't mean you no longer have it just it's not showing up - there isn't a cure there's just times when the illness isn't so bad, I would definitely recommend another rheumatologist as with this illness you need a team of medical specialists that know what they are talking about - I only got taken seriously when I got the lupus test off the net wrote all the symptoms down highlighted the ones I had (only need 4 out of the 11 I had 7) and all the tests were done, I now have a decent team around me so everything seems alright now I know I can call someone if something doesn't seem right, but I can't stress enough how much this is needed

Hope you get the support you need soon

Good luck


Bevjane....thanks for your kind words. I told the rheumy that these symptoms come and go and I know for a fact from my brother who has intrinsic circulating anticoagulant lupus that sometimes his bloodwork won't show it. I told The doctor this and he blew me off again. What if I did have it and had a stroke...what a jerk!! I am really upset with this doctor. I am not going back. I will monitor and if symptoms come back, I will call another doctor. My kidney dr. Did the blood test back in April and said I did have lupus. Again rheumy told me it was a false positive. It's almost like he's making me feel like I am stupid and don't know anything. I know how to read and I know how I feel. Hope you are doing well.


I had years of that was suffering from the age of 11 til I was 39 now I just tell them straight and if they do anything wrong I just threaten with a move to another hospital and a formal complaint being made against them, that works for me - maybe ask the doctor after having a positive test and having all the symptoms then how does he think it's not - get him to explain himself to you and see what he comes back with that in itself would be interesting but I'd go armed with lots of information on lupus so you can argue your case and then ask him for a second opinion you are well within your rights to do that

Hope it all gets sorted I know getting a diagnosis is almost as bad as the illness itself


Good idea Bev....he was very frustrating...


This guy you saw must be related to the idiot I saw when I went I was covered in purple bruises the rash was present on my face and he did not know what was wrong with me then he realised I have COPD and blamed all my symptoms on steroids even the rash on my face.

Sometimes I think we are better off suffering than going to see idiots like these guys.


Sorry onamission....sounds like they r related...even if they didn't agree with what we think, they could still have the care to listen. If you don't listen as a doctor, you're not a good doctor. So many awful ones out there....


I agree but I keep going because I believe in re-incarnation and if before I bounce of this earth they find out what is causing my problems that will be a bonus but never will I go back to see that idiot as long as I live.

1 like

Hi Natura

I know how frustrated you must be but you can get a second opinion at guys hospital the leading hospital for lupus in Europe why mess around with doctors that don't know and don't care about your symptoms. I travel to guys in London every 2 months with my daughter from Manchester but we would rather do that then spend endless visits to consultants that never give you a proper diagnoses or care what you are going through. They are the leading hospital in the research for lupus too.

On the juicing subject veg/fruit my daughter started in January 2014 the Dr's at Guys are supportive of this, and her blood antibodies dropped in 4months dramatically and her energy levels increased massively, it's worth trying you have nothing to loose.

Any autoimmune disease / cancers affects cells at cellular level and juicing fresh organic veggies and fruits help cells! she only drinks filtered water and avoids anything with additives it makes quite a lot of sense as additives are chemicals foreign bodies that can have various affects on cells??

She now has a blog giving advice and recipes on what to eat!!


Great news Larry....and interesting how juicing helps. I feel a lot better juicing too. I am trying to do at least once a day. I live in the US, so I cannot go to that center. I feel ok right now with a lot of stress around the home. I seem to be coping ok. Thanks for the help. Good luck to your daughter...and she is lucky to have a dad like you. I have no parents, but 12 brothers and sisters who could care less. Except one maybe. Use to taking care of myself. Nice to get support here.


Hi there, I too have negative blood work but unlike you I am about to start a treatment plan for symptoms. I have kept a log of my symptoms/bad days for the past year, I have also kept photographs of rashes, Raynauds & anything physical. They can't give me an exact diagnosis but they believe I have limited scleroderma with an overlap of lupus and fms or otherwise known as undifferentiated connective tissue disease. Please don't just take what your GP/consultant says you know if something isn't right and unfortunately you have to fight to be listened to. Seek a second opinion.

Good luck. X


Thanks's a tricky disease..I believe something's not right still. I have been having problems being in the sun too long too. This summer I was at the beach late in the day, and when I was walking back to the car my shoulders started stinging and my forearms looked a weird brown, not like a tan. It sort of scared me. Maybe it was nothing, but last year I started to itch when I was in the sun at the beach. This is only one of the strange occurrences...can't open my eyes in the morning. Have to force them open every morning. Thanks for caring. I will keep aware of the symptoms and get help from another doctor if things change or get worse. I won't go back to that dr. He dismissed all of my pains. Even my cracked heels which are painful, the pain I get in my back...very frustrating.


I have something similar only my blood tests are positive. I had a capillaroscopy done yesterday. Might be worth having done as there are definite patterns that identify scleroderma. Was really interesting, if somewhat disappointing, to see my capillaries yesterday. It helps as part of the diagnosis especially when there is an overlap.


You may also like...