Mycoplasma Pneumonia/lymes help

[dhicks19]

Hi guys. I have been having the following symptoms for 3 months now:

Stabbing head pains, hearing loss and tinnitus, blurry vision, dizziness, arm weakness, tingling, back and neck pain, muscle and joint pain, various twitches, depersonalisation, spleen or liver pain,memory issues and more.

Some days are worst than others.

It started 3 weeks after my holidays in the canaries.

I have been on ABX for 7 weeks now started doxy 200mg day then increased to 400mg.

I am now on azithromycin mon tues wed @ 500mg and minocyclin 200mg daily. Been on this for 1 week and i am starting to herx i think.

No diagnosis from nhs at all and no treatment from them. Even been to infectious disease in liverpool. Admitted to hospital twice, 2 brain scans. Scans and bloods normal. 23 gp appointments so i give up with them.

I paid to have my blood sent to armin labs in germany. Results:

Negative borrelia blot
borderline borrelia elispot
iga and igg positive mycoplasma pneumoneia
iga and igg positive coxsackie
high lymphocytes
low platelets

I showed my go and he said it just means ive had these infections in the past and i havnt got chest infection so cant be that.

The german doc said lymes is not my main problem. Its myco and coxsackie which  can cause all my symptoms.he said the half life of iga antibodies is 6 days so its a present infection. He also said i dont have to have chest infection for these to be present.

I would say i have improved about 50 percent since the start but i am worried i will never get better. The neuro symptoms are the worst.

Has anyone had anything similar?

[mojogal]

You may want to talk to your Dr about taking double the amount of GSE. Horowitz recommends 500-600 mg a day in his book.

[JackieCalifornia]

Welcome to MedHelp -- sorry about all you are going through, but *good for you* for plowing ahead and not just crawling into bed and giving up.  

You comments illustrate in several ways how difficult it is to have illness(es) that local MDs are not very familiar with.  Docs learn all that stuff in medical school, but once they graduate and settle down, they often become accustomed to the local illnesses and then keep their focus on those familiar local ailments.  It's just human nature on the doc's part, but can cause the docs to focus on what they are most familiar with in day to day practice, and causes them to not take into account what ailments you may have picked up in your travels.

Your comments above support that view:  "No diagnosis from nhs at all and no treatment from them. Even been to infectious disease in liverpool" -- plus the two hospital admissions, scans, and blood tests you mention.   To a Liverpudlian physician, the ailments and infections in areas you yourself have traveled may not carry much weight or understanding with those very local UK docs.  This is not to criticize the doctors, but to keep in mind their possible (even likely) blind spots in trying to help you (including two hospital admissions and brain scans.

The question then is:  how to find an MD who thinks broader thoughts.  Your decision to have blood tests in Germany is a good one, assuming that Armin Labs has a broad view and understanding of illnesses that may not occur in Armin's area. Given the test results you received from Armin, this was a worthwhile step:

"Results:

"Negative borrelia blot
"borderline borrelia elispot
"iga and igg positive mycoplasma pneumoneia
"iga and igg positive coxsackie
"high lymphocytes
"low platelets"

Your physician's response that the test result "just means ive had these infections in the past and i havnt got chest infection so cant be that."  I am not medically trained, but I would not assume that these test results are firm evidence that the test results indicate ONLY an old infection that is now cured.

The German MD knows far more about medicine than I ever will, but I would consider taking copies of ALL your past test results to another physician who understands not only infectious diseases but also Lyme ... which is itself also an infectious disease, but one which many MDs do not fully consider.  It is also possible to have a Lyme infection still with you, while also having additional infections such as mycoplasma (a bacteria without a cell wall) and coxsaxie (which is not bacterial, but is a virus like Lyme).  In other words, you have a lot of things going on at the same time and over a long period of time, so it will take a wise and experienced MD to sort it all out.

The German doc knows far more than I ever will know about mycoplasma and coxsackie virus, and he may be open-minded enough to ensure you do not have Lyme rather than just brush it off.  Some MDs do not take Lyme seriously -- because they just do not understand how potentially serious and how widespread Lyme disease is.

That you still have neurological symptoms is something to follow up on with a Lyme specialist, perhaps -- particularly since your MD has apparently decided Lyme is not worth exploring with you.

Also, the fact that you "have improved about 50 percent since the start" is very encouraging, and in your situation, I too would continue to look for more answers.  All physicians have areas and issues that they miss, and getting a quiet second opinion from another physician is something I would consider seriously.  I can certainly understand your worry about not getting well, especially with the neurological symptoms, so all the more reason to get a second opinion from another MD.  

You say, "i am worried i will never get better. The neuro symptoms are the worst."  I understand.  Lyme disease can effect your hormonal and emotional status, which causes the physical illness to feel even worse.  I saw 20 (!) physicians before finally receiving a diagnosis of Lyme and babesiosis ... and a Lyme specialist could be a great deal of help in understanding how Lyme and its several co-infections are tangled together, which confused MDs who do not fully understand the nature of Lyme disease.

If you have copies of the tests which have already been done, consider taking those copies to a Lyme specialist for review (but always keep your *own* copies of all tests for any future needs).  It will save time and also help the Lyme MD understand your particular situation.

Your instincts are sound, and I would do as you are:  keep moving ahead until you have answers and treatments.  Lyme is very curable with treatment by certain specific antibiotics and for a necessary length of time (months, not weeks).  Finding a wise and experienced Lyme specialist physician is what I would do.

Let us know how we can help, and how you fare -- best wishes to you --

[dhicks19]

Thank you very much for your post. I take GSE 300mg daily. Also cats claw and artemisinin

What are your symptoms?

Thanks

[mojogal]

Those results are different than the testing here but you probably have lyme. I also have mycoplasma which is considered to be a co-infection of the lyme.
The co-infections usually require a different medication.

If I were you I would take something for the cyst format of lyme. There are prescriptions like flagyl but even Horowitz in his book recommends Grapefruit Seed extract which is what I take daily since the antibiotics  bother me too much.

There is a lyme clinic in Germany.  I hope you start to feel better.