Awful Symptoms Neuropathy

Infections
1

Lately I have been getting some awful symptoms, mainly at night just as I'm trying to sleep.  Firstly my thigh muscles feel tight, then I get weird shiverring feeling from my pelvis down my legs and back up to my pelvis.  This keeps triggering for a few hours sometimes with bad upper gastric pain.  As soon as the tingling shiverring starts, my blood pressure jumps to around 185/115 and I get very cold.  Temperature goes down to 35 degrees and every muscle in my body starts shiverring as if I had been sitting in a freezer.  I feel nauseous and have the need to urinate every 10 minutes.  These symptoms last for 2-3 hours and die off a bit so I can sleep and I wake up feeling unwell and drained.

My doctor says this is neuropathy from taking propylthiouracil for my hyperthyroidism (4 years on this medication) but my thyroid levels are stable.

One positive lyme test and a suspicious one from France as my lyme levels were 4.7 (only counted as positive if 5.0 or over)

Doctors won't listen to me or accept these results and I'm getting sicker and sicker.  Do I just self medicate as I'm afraid this is going to kill me before someone listens enough to treat me.

So far diagnosis given: fibromyalgia, borderline vasculitis, hyperthyroidism, adrenal maladaption, neuropathy, multiple chemical sensitivity, lyme disease. 

Only being treated for the hyperthyroidism and doctors say I must be weened off the drugs as they are causing this, although I was very sick for 3 years before being given these drugs.

2

Hi Jeanette

is your doctor suggesting alternative medication for your hyperthyroidism.

he can't just wean you off and not give you anything else.

perharps some of your symptoms may be due to poor control of your thyroid problem, do they check your thyroid function levels regularly.

perhaps you should ask for referral to endocrinologist.

mind who knows, this could be lyme, nothing would surprise me. I think doctors cannot accept all the weird symtoms of lyme. They ought to suffer them for a day! Hope you get some relief

3

Hello Jeanette,

Sorry to hear you're so unwell, those are a lot of horrible symptoms you're dealing with at the moment. 

I had Lyme Disease last year and recognise many of the things you're suffering from. 

Has your doctor dismissed Lyme Disease because of the test results? Do you recall being bitten by a tick or seeing a rash? 

Unfortunately, the medical profession over rely on the results of a notoriously unreliable test, which means patients with unconfirmed Lyme Disease remain untreated and suffer. This is not to say you have Lyme Disease though.

Can you see another GP? Try to find one that has an open mind and will test you again. Did you take the ELISA test?

I actually had classic LD symptoms. I was bitten by a tick, had a bulls eye rash behind my knee and flu like symptoms with aching joints. Even so, it took several doctors and many visits to the surgery before Lyme Disease was suggested and an ELISA test done. 

Be careful of private doctors who claim to be Lyme literate. I found a GP at my surgery who was willing to look into Lyme Disease and who actually listened to me. I suggest you try to do the same.

Also, make a day to day diary listing your symptoms, how much sleep you had and make a note of your pain levels from 1 (being the lowest) to 10 (being the highest). It's very useful when you go to see your doctor. 

It's hard to communicate calmly and effectively when you're sleep deprived and in pain, but try to remain focussed as you will get the best reaction from the GP. If necessary, take another person with you who can take notes, as I found my head to be very foggy when I had LD and it was difficult to concentrate.

Good luck! I hope you start feeling better soon.

 

4

Hi Jeanette. A lot of doctors don't even think Lyme can cause so many symptoms and believe it can be cured with a round of antibiotics. What I fear is that borrellia is now present in every part of your body, including tissues and the nervous system. You should go to a Lyme Literate Doctor who can actually understand the disease and treat you appropriately.

5

Hi Caroline

Thanks for your reply.

I did the elisa test IFA which was equivocal, I then tested positive on bands, 18, 23-25, 31, 39, 41, 66, 83-93 on IGM Western Blot and 18, 34, 39, 41 on IGG Western Blot.  Considered positive on IGM and negative on IGG.  The lab doctor told me I definitely have Lyme.

A further test in France was considered negative as I only tested positive on band 39 (value 4.7), only considered positive if value 5.0 or over.

I was in good health until 2008 when I was given a corticosteroid shot for allergies.  Within 15 minutes all hell broke loose and I had an anaphylactoid reaction.  I was immediately put on 3 weeks of Ciprofloxacin and went downhill from then and never recoverrred.

It took 3 years of doctors telling me my symptoms were in my head, for them to say I had subclinical hyperthyroidism and a multi-nodular goiter.  It's weird because my thyroid doesn't uptake iodine and the nodules are neither hot or cold. Now 4 years on anti-thyroid meds and I'm no better and symptoms still persist although some have become worse.

2 years back I took a couple of weeks course of Clindamycin (low dose) for dental infection.  Felt best I ever have during this, but when I came off them I got really sick and my porphyrin rate was extremely high.  Although retested 3 months later porphyria was ruled out.

Every time I put my symptoms into the sear bar, Lyme popped up so I decided to get tested.

I tried eating garlic daily but the symptoms worsened and I got boils all over my head and body.  Still if I try to eat anything with garlic this happens.

I had an abdominal MRI in January which showed multiple cysts in my liver, kidneys and ovaries, but docs say this is normal. Brain MRI 3 years back shows a couple of white spots but again docs say this is normal.

This debilitating illness has now been running for 7 years and I haven't a clue why.  My thyroid levels remain normal and I get them tested regularly so it isn't my thyroid doing this. My palms and soles of my feet are bright red, and my chest flares up red throughout the day.

My doctors won't even consider the possibility of Lyme but are giving me no answers to what's wrong. Once I am weaned off the medication I will have to either take radioiodine to kill the thyroid or surgery to remove it which is a bit scarey as I have multiple chemical sensitivity.  Docs think that this will resolve my problems but I was sick for 3 years before I even took this medicine.

I don't remember a tick bite but in 1998 found one on my bedroom floor (maybe it fell off me).  Around that time I got very bad flu and started getting bouts of vertigo every month.  So bad that I would go to ER for stemitil shots.  This went on until 2008 until I got the steroid shot.  I was also very anaemic so doctors used to tell me it was because of anaemia and a suspected middle ear infection.

I never knew anything about lyme back then so never checked for tick bites.  We rescued so many cats and dogs, often infected with ticks which we would use tick shampoo to clear.  I live in the middle east and there are so many animals to rescue.  I still rescue them, I can't bear to see them helpless and unloved.

I was also a sterardess for 8 years flying all over the world, being bitten my all kinds of insects.  Blisters from ant bites, huge swellings from mosquito bites etc was part of normal everyday life.

When I was first given the steroid injection I had red streaks running up my thighs.  They disappeared after 3 weeks.  I then woke a couple of months back with 3 red straks on my arm that lasted a few weeks.

So if this is Lyme it may have been there for 17 years or more.  I did get bitten by some strange looking flying insect a few years back that made my legs swell an burn for a couple of months.  Havent a clue what it was as it looked like a mini moth and burnt on contact.

 

6

I get my thyroid levels done every few weeks and they are always in the normal range.  My endocrinologist in UK says he has never seen anyone like me before, as does the lady endocrinologist in Bahrain where I live.

They have tested me for all kinds of illnesses such as carcinoid syndrome, mastocytosis, adrenal and pancreatic tumours etc but everything is normal.  They can't treat me for lyme as they are not experts on the disease, but they don't disbeleive it.  I have been seen by a couple of tropical disease specialists who refuse to accept my lyme results, as they say lyme is rare and we don't have lyme in Bahrain even though the country is infested with ticks.

7

I know.  I'm trying to find one but feel too unwell to travel and live in Bahrain.  Whenever I have flown home I receive the same blank expressions from doctors in UK as I do here and no help whatsoever.  Am waiting for the summer holidays to come home again and try to find somebody to help me.

8

Dear Jeanette,

 i have huge sympathy for you. It may help you to hear from me - I have finally been diagnosed with Chronic Lyme and have had those nasty 'tight' pains down the front of my thigh muscles for some time ( approx 5 yrs  but getting alot worse),together with shooting nerve cramps down the leg ( like cyatica but my consultant thinks its the Lyme), plus severe joint pains and fatigue. the pain in my legs come sometimes when Im walking but much more problematic at night when trying to rest.  It got even worse when taking Doxycycline. Now on new med regimen and slightly better, tho' its agonising at times still throughout the night. Misery.. When I was tested the consultant asked for a huge range of screening to be done. As he suspected i not only had Lyme but had several active viruses ( 2 strains of Herpes, epstan Barr, and Measles) my body was unable to fight because of the Lyme. I am having to take an anti viral on top of all the Lyme meds to try to get rid of these as well. The Lyme aparently reeks havoc with your immune system and its unable to fight other illnesses. So wether its your Lyme, or an additional infection you somehow need to get a thorough screening to find out.. Remember to tell your doctors that Lyme is ' The great mimicer' of other illnessses.

 it sounds to me like you have definately have active Lyme disease. My first test came back 'equivocal'( not quite is full range), then had different tests sent of to American Lab and gor very different positive results. Do not give up. I hope this is somehow helpful and supports you. Hester

9

What results did you get from USA and did you doctor accept these. I am currently being weened off the thyroid meds as docs think I have neuropathy from the PTU. Regardless if this helps, I was ill with this 3 years before being given the meds. Just want somebody to help with the underlying illness - lyme