My wife was diagnosed with MS 6 years ago now and has a numner of Lyme like symptoms that are related to ms but also some unrelated like irregular periods and palpatations. We went to DR D in the UK and have now had all of her test results in. Here they are:
Blood Count:
Leucocytes 7.3x10exp3/ul Erythrocytes 4.5x10exp/ul Hemoglobin 13.0 g/dl Hematocrit 39.8% Thrombocytes 251x10exp/ul Neutrophile Gran 72% Lymphocytes 22% Monocytes 6% Eosinophile gran 1% Basophile Gran 0%
All within reference
CD3-/CD57-NK- Cell test
80 /ul (reference greater than 100 /ul)
Elispot-Lymphocyte Transformation test for Borrelia
Borrelia fully antigen SI3 (Reference less than 2) Borrelia Peptide Mix SI0 Borellia LFA-1 SI0
Interpretation
The results of Lympjocyte transformation test are an indication of an actual cellular activity against Borrelia burgdorferi in blood. The CD57-cell count is an indication for a chronic immunsuppressive situation, caused by Borrellia burgdorferi.
In summary there is an actual and chronic cellular activity agains Borrelia burgdorferi in blood.
IGeneX WBs:
IGM
41 ++ 83-93 IND
IGG
31 IND 39 IND 41 ++
Really confused now. 2 mildly +ve tests and 2 mildly -VE is how I would read it. How significant ar IND results on the WB.
On balance I am thinking she must have Lyme, what do you think?
Thanks in advance (not looking for you to diagnose, just to share thoughts and experiences)
Posts: 10 | From UK | Registered: Jun 2009
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bettyg
Unregistered
posted
welcome john!
i don't know about many of the results, etc., but i do know about the westen blot igm and igg. print off the below link for W.B. results and then circle the ones she posted postive & IND for ok!
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
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This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes and I see high hemoglobins and hematocrit but
no sed rate or protein levels. If you got these it
might help you see that they are in the cells. Yes
it is very much like mine and I would say no to MS yes to Lyme.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Some of those tests are not often done in the U.S. You might want to post these results on the yahoo Eurolyme forum for replies also.
It does look like lyme could be present. What other symptoms does she have? Any joint issues? Night sweats? Others?
The thing is that ticks often transmit more than one germ, such as babesia, bartonella, ehrlichia, etc. These have to be tested for separately. The symptoms may overlap with lyme.
Any idea of when this started? Like where she would have been at the time. At home gardening in the backyard, or possibly foreign travel to Lyme, CT?
Posts: 8430 | From Not available | Registered: Oct 2000
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I have posted on EuroLyme but it is not that active a board. My research leads me to believe the arthritis is more common in US strains that EU ones but she has had no such symptoms. Sorry for the long post but here is my original (before testing ) post from EuroLyme:
My wife was diagnosed with MS 5 years ago. It started after a fall from her mountain bike with a tingling in ther right thumb that gradually spread down her entire left side.
She went through the tests and was told that they were not conclusive (spinal fluid showed no signs, MRI showed "a possible" lesion). Neurologist simply said if you have another attack it is MS if you don't think yourself lucky.
The symptoms passed but a year later another attack (this time on the left side) appeared and neurologist diagnosed MS with no more formal tests.
My wife was put on steriods which had no effect and then Beta Interferon, which seemed to make the desease progressive rather than relapsing remmiting.
She is now off this and taking LDN for the last 7 months though it too seems to be having little effect.
Her symproms (which are gradually worsenning) are stiffness or spasticity in the left leg and arms, cognitive impairment, vertigo/balance issues, muscle weakness (mainly left but also right side)red blotchy skin on her left limbs, fatigue, depression.
All of these are common in MS. However she has some other symptoms that do not seem to be MS related: some loose bowel function at times,she had a period about a year ago of frequent headaches and short breath, she is losing more hair (it is not geting thin but more is being left in the sink/shower), she also has very irregular periods both in terms of timing and density.
This led me to look at possible causes and I came accross Lyme. Interestingly we are/were both keen mountain bikers and lived in Norfolk where we cycled regularly in Thetford forest and now live on the South Downs where we regularly cycled (both Lyme hotspots in the UK).
Avril does not remember a tick bite but I have a vague recollection of her having an infected bite with a red rash around it that we assumed was a bad mosquito bite.
I am worried that this recollection may be a false memory due to wishful thinking but it is there in my head!
Bearing in mind we have spent the last 15 years living in Lyme prevelent areas do you think her symptoms sound like it might be lyme? Would it be worth testing? If so is the Breakspeare the only option?
Thanks in advance for the help I am sure you will give me and sorry for the long post.
Posts: 10 | From UK | Registered: Jun 2009
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posted
Well, since the MS diagnosis and treatment seem to be leading nowhere good, and you do have some indication that lyme might be involved, why not give it a try. Not all MS is lyme, but a lot of people have been misdiagnosed.
Most people do not remember a tick bite. They are tiny and easily missed, especially at the nymph stage.
Lyme symptoms vary a lot. So, there may be those that manifest without arthritis, some that seem to be primarily psychiatric, etc. This is why doctors seem to have such problems diagnosing it. Then add in the coinfections, testing problems, and you have the current big mess in lyme diagnosis and treatment.
Only people in the UK will be able to answer the question about where to get treatment. Presumably you have had some contact with others in the UK to know which tests to get, and someone had to order them. If you edit your post to change the subject, indicate UK, maybe some of those people will respond. We do have some UK members of this forum.
Best of luck. If it is Lyme and possibly coinfections too, and she has been sick for years, it could be a long road with treatment. Especially since she has been given steroids. Best to get a long distance runner mentality, not a sprinter. Or maybe there is a biker equivalent to this!
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Thanks for the response Lou. Dr O is a recommended LLMD in the UK (ONE OF ONLY 3!) So we will obviously be going back for a debrief on the results.
From what I have read 2 +ve and 2 inconclusive test is a pretty goo ratio to be honest.
Posts: 10 | From UK | Registered: Jun 2009
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posted
Thanks for the info everyone. Lymetoo, it is the IND results that are cuasing me to lose sleep. If they are a weak +ve why don't they call them that. Is there anything else that can cause the band to show a faint line other than small amounts of the material?
Posts: 10 | From UK | Registered: Jun 2009
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bettyg
Unregistered
posted
hi john,
the ind means they HAVE SEEN SOMETHING but can not 100% identify it.
so treat it as a positive !! *****************************
1 of our new uk members is PV, peter if you click on DIRECTORY at top of page go to 1st blank line on left side
type in pv click search
it will show his name; click on there and you can send him a private message from there ok good luck.
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Yes John, if you would like more proof you could
Go with antibiotic like doxy
only for 3 weeks. Stop wait 2 weeks and draw and
ship samples to Igenex. This is the only way I
got a positive. Had to kill some before they
would show up. After this I got 4 bands positive
and 4 IND. Doc said yes I diagnose you with
Neuroborreliosis. Good Luck and since I felt
better on the antibiotic I went right back to the
antibiotic, but we also do a lot of other stuff
here to help clear the system of the poisons
released by killing them. So do the homework.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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Got an appointment with our LLMD next Tuesday so will see what he says.
I am paranoid that he will say it is not lyme because the WB came back negative and refuse treatment.
Im I justified in pushing for treatment based on the +ve Elispot (LTT same as Melisa) and CD57.
Is it a question of ordering 4 tests in the hope of getting one of them positive or is it more a case of ordering 4 and wanting them all to be +ve before treating.diagnosing?
Thanks in advance, we have spent so many years coming to terms with a chronic, untreatable disease (MS) with no hope of recovery I am really scared this is just going to be another false hope. Not sure I could cope with that.
Posts: 10 | From UK | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Is that LLMD an ILADS-member? If they are just IDSA, I'd steer clear. But if they are ILADS-educated, you should be in good hands.
I'd be certain before you go of their education regarding lyme and of their affiliations.
I learned, over years, that it's nearly impossible to push a doctor to treat lyme. Better is pushing to find a doctor who knows HOW and WILL treat you (or your wife). Anytime I have to push a doctor, I am seeing the wrong doctor.
If the LLMD is ILADS-educated, most likely, s/he will know how to do a good clinical exam and evaluate the history. Lyme is a clinical diagnosis. Your doctor will be looking at your wife, first and foremost. Then, the papers.
HIstory of treatment is important and the exact kinds of steroids and duration should be with your file for the LLMD to see at first appointment. That makes a difference in how s/he will proceed.
Not all ILADS LLMDs treat the same but they usually have the same understanding regarding diagnostics and share the education regarding the nature of the spirochete or other organisms involved in the coinfections.
Now, in the UK, you may have some LLMDs who are familiar with ILADS but not members. It's the familiarity with the ILADS research that you need.
Do you have a local support group where you can find out more about patients' experiences with this doctor
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[ 06-16-2009, 04:08 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Germany Says No to IDSA Lyme Guidelines -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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P.S.
Your wife is very fortunate to have a husband who is so caring and willing to not only learn more and do whatever it takes to obtain proper treatment.
Be sure, now, to take care of yourself, too. Good luck to you both.
-===========
I don't have the energy right now to narrow this down, but do this Google search: "Stratton protocol" MS
---
As I recall, Stratton is in the UK and has successfully treated many MS patients with a CAP (combined antibiotic protocol) for Cpn (Chlamydia pneumonia). The protocol is very similar to that for chronic lyme.
And . . . it's a good idea for your wife to be tested for Cpn, anyway. It may be that if that is present, you can more easily find doctor who will treat Cpn. Many lyme patients also have Cpn. (Although some doctors say it's no big deal, there is research to the contrary for those affected chronically.)
more at www.cpnhelp.org (CPN HELP), however the Google search above will more quickly zero in on the MS connection to the UK researcher. Doctors who treat by Stratton's guidelines in the UK would be more likely to also understand lyme and other tick-borne infections.
posted
Thanks Keebler for the kind words. The doctor that we are seeing is the one that did the initial exam and ordered the tests. He is one of only 3 UK docs recommended by the folk on Eurolyme.
I have read quite a bit about CPn and MS and it is one reason why I feel we have nothing to lose by trying antibiotics and seeing what happens.
It looks like Lyme and CPn could both have something to do with MS like symptoms and since the traditional meds have not worked it seems worth a try.
Posts: 10 | From UK | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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Well, then, it sounds like your doctor should work out okay. When you said you feared he will see a "negative" test I was concerned that he was not educated. However, if he was recommended by EuroLyme, he should be well versed.
He may not be up on supplements, though. IMO, liver support is essential, absolutely, without a doubt REQUIRED.
I also think adrenal support is required. I deal with many "MS" like symptoms (seizures, sound and light hypersensitivities, etc.) and both adrenal and liver support save my life everyday.
Magnesium and Fish oil, too. I cannot understate the importance of these.
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