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Posted 4/10/2018 8:54 PM (GMT 0)
New member first time I have ever posted in a forum for any thing Have been sick now for 2mos and need help/ advice/ Was feeling lousy back in November noticed a rash on my chin and behind my ears, felt really tired achy joints and chronic head ache that lasted for a couple weeks then I got the flu. took abx zpac and went back to work in January. OK for about two weeks and then started to get migratory joint, muscle pain headache came back got chest pains . went to ER blood tests all good and later heart doc . did a stress test and no problems there. Heart doc also ran western blot for lyme( I live in a lyme hotspot) and tested negative, but ANA was positive at 1:50 Pain got worse and more symptoms: itchy scalp, hair loss teeth hurt. gas ,indigestion, stomach gut pain. Went to GP test for lyme blood,mets thyroid liver panel. negative for lyme . Blood and mets normal a couple things out of range. All symptoms kept getting worse, convinced GP to start me on 100mgDoxcy for 3 weeks. Went for my cancer scan (yeah I,m a real winner) more blood tests another Lyme test, No cancer(blessing still in remission) blood tests normal a couple out of range including ESR. Saw Rheumatolgist he said nothing is wrong stopped the Abx after 2and half weeks. Some of the symptoms seemed to be going way joint muscle pain not as bad no longer any pain in toes fingers sole and palms. After getting my gut pain gone from abx was feeling the best I had in months . That was3 weeks ago and now all the symptoms are back in full force. Muscle joint pain all over the place (sprained my ankle walking across the kitchen) including toes, fingers , sensitivity to temp, teeth ache itchy scalp hair loss, diarrhea, fatigue ,insomnia, headache. I think despite the negative tests I have lyme. I know lyme tests can give false negatives, any one out there have false negatives? Are there any special blood ?mets test that will help in a diagnosis? What is protocol for abx that I could "suggest" to my GP? I'm going to see a lyme specialist in NY that's really expensive does anyone have any experience with any Massachusetts? . Any advice comments would be really helpful Thanks again
Posted 4/10/2018 10:14 PM (GMT 0)
Hi and welcome to our forum,

First I want to commend you on not giving up and for following your instincts about how you feel, the symptoms and your health.

Second, 'Im sorry you are going through all of this on top of having cancer, glad to hear its in remission.

Many test negative for Lyme and have it. Do you have the results showing the bands from your western blot, there are members here who can interpret the results. The CDC and most MD's will say your negative when there are bands that show up that are specific to Lyme.

Many of your symptoms do sound like Lyme and/or the co infections. Yes there may be other infections as the Lyme Bacteria rarely travels alone.

Going to an LLMD is important so they can also clinically diagnosis you by the symptoms.

There are members here that see llmd's in Massachusetts. I am in western Mass but I see one in New Hampshire now.


To get more recommendations about an Mass. llmd you might want to start a new post putting "Seeking Recommendations for LLMD in Massachusetts"


You can also go to ilads.org ilads.org/ilads_media/physician-referral/

they will email you back some names for your area.


We encourage all new members to read our "new to Lyme" start here thread at the top of the page.

It has good information on testing, Lyme, detoxing, symptoms and more.

Others should be along soon to chime in.

Take care, Jo
Posted 4/10/2018 10:31 PM (GMT 0)
Positive ANA and elevated ESR can be indicative of Lupus. A lot of your symptoms also coincide with that. I would encourage your rheumatologist to do further testing. Also, I believe there is a Lupus forum on here and you may want to post on that as well. I can't speak for Lyme since I currently don't have it, but I noticed your thread and wanted to respond.
Posted 4/10/2018 10:56 PM (GMT 0)
RockerGirl has a good post as it is always important to rule other things out or confirm things.

I was told I has MS and strokes but for my case that was incorrect as I was clinically diagnosed with Lyme and co infections.

I am not an medical expert and do not have knowledge about the Lupus markers.

I wish you the best of healing and take care, Jo
Posted 4/10/2018 11:46 PM (GMT 0)

mvlad said...
New member first time I have ever posted in a forum for any thing Have been sick now for 2mos and need help/ advice/ Was feeling lousy back in November noticed a rash on my chin and behind my ears, felt really tired achy joints and chronic head ache that lasted for a couple weeks then I got the flu. took abx zpac and went back to work in January. OK for about two weeks and then started to get migratory joint, muscle pain headache came back got chest pains . went to ER blood tests all good and later heart doc . did a stress test and no problems there. Heart doc also ran western blot for lyme( I live in a lyme hotspot) and tested negative, but ANA was positive at 1:50 Pain got worse and more symptoms: itchy scalp, hair loss teeth hurt. gas ,indigestion, stomach gut pain. Went to GP test for lyme blood,mets thyroid liver panel. negative for lyme . Blood and mets normal a couple things out of range. All symptoms kept getting worse, convinced GP to start me on 100mgDoxcy for 3 weeks. Went for my cancer scan (yeah I,m a real winner) more blood tests another Lyme test, No cancer(blessing still in remission) blood tests normal a couple out of range including ESR. Saw Rheumatolgist he said nothing is wrong stopped the Abx after 2and half weeks. Some of the symptoms seemed to be going way joint muscle pain not as bad no longer any pain in toes fingers sole and palms. After getting my gut pain gone from abx was feeling the best I had in months . That was3 weeks ago and now all the symptoms are back in full force. Muscle joint pain all over the place (sprained my ankle walking across the kitchen) including toes, fingers , sensitivity to temp, teeth ache itchy scalp hair loss, diarrhea, fatigue ,insomnia, headache. I think despite the negative tests I have lyme. I know lyme tests can give false negatives, any one out there have false negatives? Are there any special blood ?mets test that will help in a diagnosis? What is protocol for abx that I could "suggest" to my GP? I'm going to see a lyme specialist in NY that's really expensive does anyone have any experience with any Massachusetts? . Any advice comments would be really helpful Thanks again

Hi mvlad - welcome to our community.

Many people with lyme do get autoimmune markers show up (ANA is one that we see quite often happen with lyme patients).
I recommend that you get a Lyme test from Igenex. The Lyme WB IgM and IgG is $250.

You improvement on the abx...and then worsening a few weeks after your stopped also could indicate Lyme.
Also you live in an endemic region for lyme.

Yes, people on here have had false negatives.

You can start a new thread: "Looking for LLMD in Massachusetts."

In addition to members recommendations, you can email me and I'll see what I have listed for that State.

Only a LLMD should be seen to rule out Lyme disease.

Please ask any questions you have.
Posted 4/11/2018 3:11 AM (GMT 0)
Those symptoms scream coinfections. Lyme is typically accompanied by any number and combination of coinfections. Lyme test is only for borrelia, and you can still have Lyme (and coinfections) even with a negative test result.

Did you have ANY positive bands at all on the Western blot? If so, can you list them here? There are certain bands that are specific for Lyme, even if you don't have all the ones the CDC requires for a positive.
Posted 4/11/2018 3:11 AM (GMT 0)
Thanks Folks , Goshawk (great little harrier) will find specific results for Western Blot with reflex, also next post will be looking for LLMD in mass, Read the new to Lyme page and was the most informative of all the other ones I've read. Rocker girl Thanks Iwas (still am ) but Rheumatologist (bad one Said ANA would be positive at higher ratio, Blood work would be anemic , Kidneys wouldn't be working good, and rash would probably be more severe. Girlie Thanks for being great moderator and don't have the 250( Poor peoples health insurance they're never gonna authorize another lyme test) saving for LLMD guy thanks again to youall cheers rico
Posted 4/11/2018 4:44 AM (GMT 0)
"I know lyme tests can give false negatives, any one out there have false negatives? Are there any special blood ?mets test that will help in a diagnosis? What is protocol for abx that I could "suggest" to my GP? I'm going to see a lyme specialist in NY that's really expensive does anyone have any experience with any Massachusetts? . Any advice comments would be really helpful Thanks again"


You said you had negative results on the lyme test. Do you have the results? And was it a Western Blot from a different lab?
Maybe even though it was negative...there were some positive bands.

We have plenty of posts about false negatives on this forum...so yes there are plenty of people with those.

EDIT: I see WalkingbyFaith mentioned the possibility of some indications i.e. positive bands on your previous testing.
Posted 4/11/2018 6:43 PM (GMT 0)
I get the itchy rash on my chin too. I'm assuming it's lyme because I don't know what else it could be. I never heard of it before with lyme, but I only started after I got it, so it probably is a symptom of lyme.
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