Does someone have any words of wisdom?

[Spiffy]

I am a 45 year old female who has never had a major health problem. Back in October of 2014 my neck tightened up on me. This is not entirely unusual because I had injured it many years ago and was used to dealing with tightened muscles. It lasted 3 weeks. Two days after I was pulling garbage cans up the curb and my arms felt weaker than usual. The next day I vaccumed out my car with the big gas station hose and my left arm was trembling when I finished. I went out to dinner that night with my shoulders hurting and my hip joints a little stiff and weak. I was very cold and tired. Since then my hips have been fine but I continued to have different pains through shoulders and arms. Then my arm muscles got really sore on and off. My left hand lost much dexterity. It is better now but not perfect. I have been left with some weakness in the arms, especially the left to include the shoulder. I finally got in to see the doc when I woke up with slightly swollen elbows and forearms. They tested for lymes and thyroid…both negative. Second blood work showed high ra factor at 68 and negative ANA. I was put on doxy just in case it were lymes and was taking 100mgs twice a day for 21 days. My gp wants me to cut back to once a day but I am afraid to. My third blood test after being on doxy 9 days said my ra factor was 71 and slightly
positive for ANA at 1:40, speckled pattern. My sed rate and c reactive proteins were normal. I only had two positive Lyme bands.My rheumy wants me off the doxy and said my new positive ANA could be bc of doxy. She is giving me 6 weeks of pt to try to get strength back which I have not started. I am afraid it is going to make my elbows swell. My cervical spine showed minor bulges at c5 and c6 with some stenosis of the little nerves coming out. She thinks some of my arm issues are due to that, but I have my doubts. I am calling Dr. A. W. in Annapolis and will go see him for 1 last opinion before starting Plaquenil. My arms simply put have become foreigners to me. Any thoughts would be appreciated.

RBFV Edit to remove AP Doctor’s full name as per forum guidelines in order to protect physician privacy. Thanks for understanding.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Maz]

@Spiffy wrote:

I am a 45 year old female who has never had a major health problem. Back in October of 2014 my neck tightened up on me. This is not entirely unusual because I had injured it many years ago and was used to dealing with tightened muscles. It lasted 3 weeks. Two days after I was pulling garbage cans up the curb and my arms felt weaker than usual. The next day I vaccumed out my car with the big gas station hose and my left arm was trembling when I finished. I went out to dinner that night with my shoulders hurting and my hip joints a little stiff and weak. I was very cold and tired. Since then my hips have been fine but I continued to have different pains through shoulders and arms. Then my arm muscles got really sore on and off. My left hand lost much dexterity. It is better now but not perfect. I have been left with some weakness in the arms, especially the left to include the shoulder. I finally got in to see the doc when I woke up with slightly swollen elbows and forearms. They tested for lymes and thyroid…both negative. Second blood work showed high ra factor at 68 and negative ANA. I was put on doxy just in case it were lymes and was taking 100mgs twice a day for 21 days. My gp wants me to cut back to once a day but I am afraid to. My third blood test after being on doxy 9 days said my ra factor was 71 and slightly
positive for ANA at 1:40, speckled pattern. My sed rate and c reactive proteins were normal. I only had two positive Lyme bands.My rheumy wants me off the doxy and said my new positive ANA could be bc of doxy. She is giving me 6 weeks of pt to try to get strength back which I have not started. I am afraid it is going to make my elbows swell. My cervical spine showed minor bulges at c5 and c6 with some stenosis of the little nerves coming out. She thinks some of my arm issues are due to that, but I have my doubts. I am calling Dr. A. W. in Annapolis and will go see him for 1 last opinion before starting Plaquenil. My arms simply put have become foreigners to me. Any thoughts would be appreciated.

RBFV Edit to remove AP Doctor’s full name as per forum guidelines in order to protect physician privacy. Thanks for understanding.

Hi Spiffy,

Did the rheumy offer any sort of diagnosis based on your positive, speckled ANA and other labs and symptoms, Spiffy? It’s very odd that the rheumy is blaming doxy for your elevated ANA! What was the rationale given for that? Never heard of such a thing. It can take time for labs to become positive in early rheumatic disease, making diagnosis tricky in the early days. Certainly, treating the infectious cause may also cause the bugs to come out of their hidey holes when under threat, raising the immune system alarm bells, but it just means the underlying disease is being exposed for what it is….not that the abx caused the disease.

Did you get copies of your western blot labs for Lyme and know which two antibody bands were positive? Some bands are so specific to Lyme, they can be due to nothing else and can definitely point to the infection. The weird thing about Lyme is that it can present with explosive inflammation or no detectable inflammation at all…but the person sure feels the pain! It could be important to decipher if this is Lyme or not, because a better selection of doc would be a LLMD, if it is Lyme, and Dr. B. in MD, might be a more appropo choice. In fact, I seem to recall he takes calls so it might be worth trying to put in a call to him to discuss this potential.

[Spiffy]

Thank you for your reply. The two positive bands were the B. Burg 41 K d and 18 k d. I had two negatives and the rest were non reactive. Since my first blood tests my my absolute lymphocytes have been low. My neutrophils in the beginning were high but they are back in line. Now my lymphs are at 684 but they should be at least 850-3900. I am hoping the doxy will continue to help these get up. I hope Dr. B. Does not have a long wait time I feel like time is of the essence. Please let me know what you think about the above numbers.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Spiffy]

As far as a diagnosis…my ra factor is high but all other indicators for ra are still within normal limits. She said from a clinical standpoint she is still not ready to make a diagnosis based on bloodwork alone. My symptoms are about to drive me insane. This is more what she is going to go by.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Spiffy]

Maz, I am now reposting for the third time. It does not seem to save. If for some reason, it takes awhile to post just ignore this one. She is not giving me a diagnosis yet based on bloodwork alone. My ra is high at 71 but all other tests for ra are still in normal range. Right now, she would only try to treat me bc of symptoms. My two positive lyme bands are 41 k d and 18 k d. 2 bands were negative and the rest were non reacting. In Dec. my lymphs were low and neutrophils high. Last bloodwork jan 8th says my neutrophils are back in line but my lymphs are still low at 684. They need to be at least 850. Thank you so much for your time and thoughts. I will continue doxy 100 msg. Twice daily for now. Let me also say that no one in my family has had any auto immune problem. I am the only one! Bless you! I hope this one saves!

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Maz]

@Spiffy wrote:

Thank you for your reply. The two positive bands were the B. Burg 41 K d and 18 k d. I had two negatives and the rest were non reactive. Since my first blood tests my my absolute lymphocytes have been low. My neutrophils in the beginning were high but they are back in line. Now my lymphs are at 684 but they should be at least 850-3900. I am hoping the doxy will continue to help these get up. I hope Dr. B. Does not have a long wait time I feel like time is of the essence. Please let me know what you think about the above numbers.

Hi Spiffy,

What came to mind is the following science article re: how Lyme infiltrates the lymphatic system as a way to hijack and evade immunity:

http://news.ucdavis.edu/search/news_detail.lasso?id=9922

Lyme is highly immunosuppressive in some people and this is why they can’t mount enough of an antibody response to test positive on standard tests. There are also tickborne coinfections and these are just as significant, because ticks pass more than just Lyme and to leave coinfections untreated can result in folks remaining ill.

When lymphocytes are low (compromised immunity), it is very difficult to fight off infections as T-Cell counts are lowered and B-Cells unable to produce enough “effective” antibody to fight off infection. A better Lyme test in this scenario is the CD57 test (measures NK – natural killer – cells, a type of lymphocyte), which measures just how compromised the immune system has become from chronic Lyme disease. It is a simple blood test that can be run through LabCorp, but is time-sensitive and the sample must be received by the performing lab within a certain time frame, as described in the following link:

http://www.researchednutritionals.com/information.cfm?ID=200

You can also get further testing run for Lyme from a private-pay specialty lab, but as you have such a low lymphocyte count, it’s probably a better (and cheaper) first step to get the CD57 run, which is covered by insurance.

Neutrophils are the body’s first line of defense in fighting infection, so seems like you have likely been fighting an infection. Mine were highly elevated in the initial stages of Lyme and started to come down with treatment. These can also be elevated with inflammation, but as you don’t have any measureable inflammation (SED and CRP normal), my guess is that your immune system is compromised with the low lymphocyte count and that it’s just not seeing the infection right now. I do recall my first LLMD telling me that some Lyme patients have this mysterious lack of inflammation (and others a lot of inflammation) and it can be a hallmark sign. I am just a fellow patient, though, so an experienced LLMD (Lyme Literate MD) should be able to explain this better for you.

I hope Dr B. doesn’t have a long wait-list, too, but if you decide to see him, then you can ask to be put on a canceled appt list if you can go at short notice. I got an appt with my first LLMD within 10 days like this. PittRALady may also be able to provide you with insight about this doc as she sees him for her Lyme/RA. Dr. B. was actually recommended the Road Back by Dr. Brown’s lab director, Millie Coker-Vann, so the benefit in seeing him is that he is also au-fait with Dr. Browns’ work in addition to being listed as Lyme Literate. You can click on PittRALady’s user ID and select “Private Message” to ask her about her experience with Dr. B. in case she doesn’t see your discussion thread:

https://www.roadback.org/forum/viewtopic.php?f=1&t=12467&p=77559&hilit=pittRAlady+dr.+b.#p77557

What a good LLMD should do is a panel of tests to rule out other diagnoses before a conclusive Lyme diagnosis is made, because other disease states can cause low lymphocyte counts.

[Spiffy]

Maz, thank you so much for these thoughts. I have private messaged PittRA. I will call Dr. B. Monday. I am very interested in the CD57. Let me ask you your opinion of Serrapeptase and/or LDN…and one more thing…AHCC mushroom complex comes highly recommended for autoimmune on some sites but others say to be cautious. I was thinking it could help raise my lymphs. Any thoughts?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Maz]

@Spiffy wrote:

Maz, thank you so much for these thoughts. I have private messaged PittRA. I will call Dr. B. Monday. I am very interested in the CD57. Let me ask you your opinion of Serrapeptase and/or LDN…and one more thing…AHCC mushroom complex comes highly recommended for autoimmune on some sites but others say to be cautious. I was thinking it could help raise my lymphs. Any thoughts?

Hi Spiffy,

I haven’t studied AHCC mushroom complex and am unable to comment on it, but perhaps someone here has used it and can share their experience. It’s worth using the search box when you have questions, just using key words for specific subjects, and you may find a number of discussions popping up to wade through.

There are a number of systemic enzymes that are great for reducing fibrin, scar tissue, lowering inflammation, etc. Serrapeptase is one and others include nattokinase and boulouke (lumbrokinase). Some, like bromelain may actually potentiate abx, so more herxing can be experienced. I use a proprietary no-name blend that my LLMD recommends. Although selling a product, this site provides a great description of how systemic enzymes work (must be used on empty stomach or they just revert to digestive enzymes. Also not to be used with rx’d blood thinners):

http://www.neprinol.com/

LDN has been discussed a lot here, so you’ll find loads of posts in the archives. I didn’t have much success on it, personally, but I know some others find it a great support. In my case, I was waking up with tremors after about 8 months of use (building dose up slowly) and it was a little unnerving, so have put it to one side, for now, as a potential later. My LLMD said this can happen with some Lyme patients. Also, if one has any candida overgrowth in the gut, it’s a good idea to clear this beforehand.

Honestly, I think the best way to raise lymphs is to see an experienced doc who can do an infection work-up and then begin treatment for the infections, because LDN and systemic enzymes will support immune function, but likely won’t deal with any serious infections that may be compromising immune function (including any reactivated viruses and latent infections).

Wish I could be of more help, but if I think of anything, will drop a line, and maybe others here can chime in with their thoughts too, Spiffy.

[Linda L]

Maz,
Also not to be used with rx’d blood thinners):

Can Neprinol be used with Naprosyn?
Linda L

RA tried everything: Methotraxate, Arava, Humira. Pneumonia three times. Anemia. Very low iron. Hypothyroidism
AP from April 2014 till August 2015. No luck.
Current medications: Natural thyroid, Mobic, supplements,
vitamins and minerals.
MTHFR heterozygous

[cavalier]

I’m going to suggest something that may seem out there. It here goes. Arms shoulders, even ulnar and radial blood supply and nerves can be affected and were for me I had TOS surgery which did nothing by the way that’s thoracic outlet syndrome for those who don’t know. The doc who suggested this was wrong. Anyways I’m trying to keep this short but call to find a good Biological d Dentist. I’ve had a speckled ANA and other inflammatory markers and SCL 70 & yes I’ve been CDC positive for Lyme but my issues weren’t to be fully placed on Lyme I had hidden oral cavitations from wisdom teeth removal way back in 74, this can cause a myriad of vague but real health issues and am y of yours fit! . Have you had any teeth including wisdom teeth removed or any root canals put in? If so save yourself some time and plse rule this in or out. A regular dentist can’t help you. If you tell me what state u r in, I can suggest some names. If it’s not the case then you e ruled it out but it’s worth pursuing. It’s not as rare as one thinks unfortunately.

Best Jill

[Spiffy]

Jill, you are right on. I had a pediatric dentist that filled my four bottom molars with Mercury as soon as they came in. He said they were soft. I later found out he had a drug habit that my parents helped pay for. I ground them down through the years and now have two root canals and 5 crowns. My wisdom teeth came out when I was about 16. I had no trouble with them as they healed. I would be so afraid to go to a biological dentist. You would have to really trust someone to be honest and not try to make a quick buck or two. Do you know of a good one in MD? So you had surgery for TOS and it did not help? How are you today?

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[Author]

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